Sarah Barnes, who writes A Different Road column, about her daughter Meredith who has learning disabilities. She wrote a book, “Meredith & Me,” which won a Barbara Jordan award.
Here are some past columns Sarah wrote about Meredith:
From Oct. 2016:
When next step isn’t college for child with intellectual disabilities
I heard stories from so many parents about the packing and plane trips and the poignant closing of doors as they drove away from college campuses this fall.
I saw dozens of posts on social media of their sons and daughters sitting on beds in their new dorms rooms. So many of them befriended my daughter Meredith, who has very different future ahead of her.
Meredith, who has intellectual disabilities, sits on her bed in our home and considers what to wear the first day to a new program where her primary focus will be how to get a job in the community where she lives.
For all the graduates from McCallum High School and their parents and friends who have asked me what is next for Meredith, the Transition to Life in the Community is the answer.
The program, part of the Austin Independent School District, will give her three more years of education with a curriculum based more on job readiness than her previous 12 years in special education.
I am thrilled to live in a school district with a program like this, but seeing the seniors of 2016 move on opens up a deeply buried wound for how differently I thought things would go before Meredith was diagnosed with a brain anomaly at the age of 7 months.
When she was born, I just knew Meredith would be a writer like me and go to college and be fabulous in every way. But when my husband Jim and I got the unthinkable diagnosis that two areas of her brain were not fully formed — corpus callosum and cerebellum — our sweet role of first-time parents became an eyes-wide-open crash course in leg braces, eye surgery, steel rods in her back, speech therapy, walkers and every possible way to cheat the brain.
Somehow between all those surgeries and milestones, however, Meredith learned something far more important—andthatwashow to engage in friendships. I want employers and others to see her not for her disabilities, but for her amusing observations, loyal friendships and generous empathy that she especially extends to those with greater challenges.
In this transitional program under the guidance of two amazing teachers, Meredith will visit job sites and learn about employment skills and city transportation. The goal for her is to find a match with an employer at the end of her three-year course.
Based on discussions I have had with other parents of children with intellectual and physical disabilities, this can mean anything from folding towels at a spa, setting up chairs for a church or busing tables and cleaning bathrooms.
I’ve worried for four years about her life after high school and I now have some answers — some welcome and others that break my heart in knowing already that Meredith will never drive, live alone or be able to run an errand without a companion to help her find a bus or read a grocery list.
But for whatever skills are out of reach for Meredith, she has been perfecting something this family calls her super power.
When Meredith is so inclined, she can pull out a detail about what she ordered at a restaurant we have not been to in five years. She can find almost anything that is lost because she apparently can see it as a picture in her mind. Helpful discoveries like “your keys are next to the microwave next to the box of crackers” would be a typical answer. She never forgets the color of anything.
That is a lot to fit on her business card, but I’m going to try.
Meredith and I went to a meeting recently to meet the other parents and students in this program, and I reunited with many parents I had seen in doctor’s offices, support groups and workshops over the years. It’s a small community — and I am grateful we have each other.
I am always struck by the conversations I have with parents who have children with issues similar to Meredith. Pity does not come to the table, but advice about how to apply for Social Security once your child is 18 is a hot topic. So is guardianship. Nothing about it was easy, but I didn’t leave with a box of tissues either.
Meredith will be able to stay in the program until she is 22. That should give her some time to find out what kind of job she would like. She also will learn independent living skills like cooking in the apartment lab on campus.
My anxiety about Meredith’s future has been around much longer than this program. Obviously I am not ready for her to move out, but I am ready to share her with a few more people because I think she has so much to offer.
Meredith has become an expert in diffusing stereotypes, and I believe she will bring a new light, a new wisdom and a boatload of humor to any job. She knows the world far better than most realize.
It’s not the life Jim and I dreamed of when she was an infant, but it’s the life she has shaped herself, remarkable in every way.
I can’t wait to see what happens next.
From December 2015:
Meredith’s progress is on display at a football game
My eyes were focused on the blurry picture on my cellphone.
I spread my fingers over the screen to make the image bigger and then I felt the sting in my eyes. These were tears. Jim came into the bedroom, and I walked over to him and held up the phone.
“Look, ” I said in a soft voice.
“Oh, ” he said, taking the phone and then shaking his head from side to side. “I wasn’t ready to see that.”
Like thousands of parents across the city, we are seeing proofs of our child’s senior picture.
Could I be more dramatic? Probably. But if a mother can’t have her breath taken away with a mortarboard, then what’s the point of paying an unreasonable amount of money to see just that?
It’s a cruel reality that the photographers start so early in the year, giving parents a tangible glimpse into the final milestone of their child’s school career that started at age 5.
The picture of our daughter Meredith represents the end of a long road sometimes full of potholes and wrong turns. Meredith began her career with the Austin Independent School District when she was 6 months old as a student in the infants with visual impairments program. Back then, my main concern was whether she would be able to see well enough to do school work. It was a time of grief and uncertainty about the future.
Here we are 17 years later, and Meredith’s progress can be measured like this: She has learned her vision works best using one eye at a time; she walks with purpose; she can have a conversation for two to three minutes; and she can write her name without coaching.
I am enormously proud of her, given she was born with two brain anomalies: one in which the connection between the brain’s two hemispheres is not wired typically and the other in which her cerebellum is smaller than average.
But for all Meredith can’t do, she offers up many isolated moments of brilliance, like when the family Amazon account was left open on the computer and Meredith clicked right on through for a purchase even though she does not read. It’s OK because I got a new cellphone cover.
Many years ago, a much older mom told me that the most important thing for Meredith to learn were bus routes and socially appropriate behavior. The routes will be challenging and she will likely always need a caregiver to help her get to and from a job. But socially appropriate behavior?
If that means knowing what to say to her friends and how close to stand next to them, then Meredith has passed with honors. In fact, she was recently invited to meet a friend at the mother of all high school events: a football game. It was McCallum High School – her school – versus LBJ/Liberal Arts and Science Academy – her sister’s school.
We fought the crowd at House Park stadium that was thick with students and large band instruments, cheerleaders, color guard members and fans divided by a sea of purple and blue. We went to the back of the stadium and up the ramp, where we turned left. Meredith’s new friend was in the Blue Brigade dance team. How would we find her?
Then, the team members all began filling in the stands from the back of the stadium. A student from the Blue Brigade came up to us. She was wearing a white sequined uniform with fringe. Her long, honey blonde hair was pulled into a ponytail and her confidence was remarkable.
“Hi, I’m Morgan, ” she said to me excitedly.
“Hi Meredith!” she said.
I pointed out to Meredith that Morgan was not just on the dance team but was an officer because she was wearing white, not blue.
“I’m the captain, ” Morgan said.
“Wow, ” I said.
Morgan smiled and then went right back to Meredith, explaining that she could come sit with the dance team in the stands. When I mentioned the energy might be too much for Meredith to deal with because of the noise from the cheering and the band, Morgan did not even blink. She came up with another idea.
She invited us to come with her when she and the team were doing stretches on the sidelines just before the halftime show.
“It will be just us, ” she said of her and her dance team members.
We joined the dance team on the northwest corner of the field where all the girls were doing stretches to get ready for their high kicks.
Meredith supervised with all the enthusiasm of a personal trainer. She sat down on the ground with Morgan when she did her leg stretches. Morgan offered her sparkly white hat with a pink hatband for Meredith to try on.
Then Meredith offered a hand to Morgan to help her get up before the two went to the fence where Meredith held on and practiced her left lifts right alongside Morgan.
You can’t imagine how much such a simple interaction gave me goosebumps. Meredith has had some friendships over the years with many friends outside of her special education classroom, but to see a student leader – a dance team captain – give her a unique window into the dance team and the football culture was not something I could ever do for Meredith. More importantly, Morgan just acted like a friend, not a tour guide.
Meredith may be in a transition period where everyone is talking to her about potential jobs and public transportation, but I will treasure this memory under the Friday night lights when she didn’t have to think about either.
From June 2014:Family unsure of what lies ahead
I’m getting this question about my daughter more often now: “What will Meredith do?”
My daughter is 17, which is the magic number for prompting questions from other parents and friends about careers, living arrangements and the prom. Meredith did have a great time at the prom, but answering the rest of the questions is harder because I’m really having to squint to see into her crystal ball.
My daughter has intellectual disabilities because of a rare congenital brain difference called partial agenesis of the corpus callosum. This means the bridge between the two hemispheres did not fully form and, as a result, Meredith has no way to get information from one hemisphere to the other, which is crucial for social, behavioral and cognitive processing.
To her credit, she does not dwell on her intellectual disabilities because that would only slow down her day, which is filled with an indefatigable level of curiosity about events and people around her, including what they are doing and wearing and what they are contributing to society. Her view of the world is on a need-to-know basis, and her quick wit amuses us as much as it keeps us guessing on the quirky capabilities of her brain.
So, why can’t I sleep?
“What will Meredith do?”
Well, she will stay five more years in the Austin Independent School District, continuing academics and then focusing on understanding the workplace and visiting job sites to see what might fit her skills and level of interest. She also will be eligible for Social Security next year, and we will have to discuss guardianship issues.
I’m hoping Meredith will have a job someday and make some money herself, but her financial future largely falls on her parents. I see several scenarios, one of which is maybe she chooses to live with us for a while, but that only solves the housing issue. She will need a companion for several hours a day for the rest of her life to assure she continues to make safe and productive decisions. Maintaining this plan financially is the equivalent of paying for a year of state college every year for the better part of six decades.
Equally as disconcerting on the fiscal front is our experience as a family waiting for respite and transition services from the Community Living Assistance and Support Services, or CLASS. This federal- and state-funded service provides a caregiver based on need, not income, and currently has a waiting list of 50,000, according to the Texas Department of Aging and Disability Services. After a seven-year wait, Meredith’s number is 8,211. It will still be three years or more before we get any assistance because of a lack of funding.
I’m getting tougher, but doing all my homework still can’t protect me from getting teary-eyed over a flier in the mail recently offering Meredith driving lessons, which is not something in her future. I held on to it for a moment, remembering my excitement when I got my own driver’s license and told my mom, “I’m driving to Northcross Mall without you!”
Sometimes I just have to stop and linger at that precipice of what-could-have-been before recycling.
Despite such punches in the gut, there is a new wrinkle — a good one — in Meredith’s future now. I can walk into our backyard and see hope in piles of lumber, exposed beams and scattered nail guns.
As Jim and I expand the one-room studio above the garage into an apartment with plumbing and a small galley kitchen, we can be safe in assuming we have one alternative for Meredith. Even though it is still on our property, Meredith would consider it a big move and, besides, do you want your child in the next bedroom for the rest of your life? Jim and I have decided this would not be our first choice.
Like all young adults, there may come a time when Meredith will prefer to live elsewhere with friends instead, but weekend retreats will be a welcomed option. The fact that we have something set aside gives me that emotional life preserver that I have needed for years.
Apparently the entire family is already reserving the space for slumber parties, cocktail hour with friends and a quiet place to write. It could even generate income for Meredith if we rent it.
I’ll tell you what it will generate for me. Sleep.
From May 2013:
Helping hand is needed a bit less
Meredith doesn’t just board the school bus, she brings the noise, taking each of the steps with heavy feet and a beautiful rhythm. Her enthusiasm says as much about her perseverance in this life as her love of public transportation.
I was gleeful last fall watching Meredith’s special education bus pull away from our curb on the first day of school, but watching the last puff of bus exhaust at the end of our street was when my giddiness turned to anxiety.
There is less need for parents to volunteer in the classroom in high school, so I knew I’d be hearing about her progress at McCallum High School largely through teacher notes and emails. For a child who didn’t walk till age 5 and is still working on writing her name at age 15, these are not just notes on her progress; they are vital hints to her future.
So thank God for “Miss Kim, ” as Meredith calls her teacher, Kimberly Hanna, who has written me a virtual book of emails and backpack notes over the school year. There have been trips to Sam’s Club to learn about store organization and money, science experiments and story writing in language arts. It’s gifted teachers and aides who can teach a science lesson to students ranging in age from 14 to 22.
Hanna has hundreds of goals she has to keep current on each student and she certainly hasn’t lowered any expectations for Meredith. Our transition from middle school to high school has been virtually seamless, except I’m still getting used to the vocational field trips. When Meredith was in elementary school, my ever-hopeful heart just knew she wouldn’t be one of the kids going to Walmart, but watching her sort out the difference between a quarter and a dime this year is a poignant lesson that my dream must shift.
Though Meredith’s program, called Life Skills, does take place in usually one classroom all day, Meredith has an elective called theater arts with the regular education population, and this is huge progress for academic inclusion. She might not interact much with the students during class time, but just absorbing the material and seeing appropriate behavior is showing Meredith something about typical peers I can’t teach her.
One case in point was giving Meredith the job to hand out programs at one of the school musicals. This did not feel forced or patronizing, as I feared. It was just the best job for Meredith at this particular production. Many of the Fine Arts Academy students stopped to meet her, talking to her like a contemporary, not a 6-year-old.
You can wish for it, but you can’t buy this kind of inclusion. Sometimes it just floats into your life and hangs there for a bit, showing its potential.
So what happens at a school dance?
Looking very mature in a black and pink floral dress with spaghetti straps, Meredith was talking like a typical teenager about her hair, her shoes and whether she should wear sparkly silver tights to the homecoming dance.
Before we left the house, she began to ask a million questions about the dance, some I couldn’t even answer.
“Will my friends be there?”
“Will there be music?”
“Are they gonna have pizza?”
I am reminded Meredith has intellectual disabilities every day, but on this night, her excitement screamed typical teenager.
The entire family loaded into our minivan heading for McCallum, but first we made a stop at H-E-B where my husband, Jim, purchased her a corsage and then put it on her wrist. Excited but suspicious, she immediately referred to it as this “flowery thing growing on my arm.”
Jim dropped Meredith and me off at the front of the school. Many of the freshmen had the same curb service, but no one had a parent tagging along. Gasp! I knew her teacher would be at the dance, but I had decided I would go and help chaperone.
We walked in the school building and the cafeteria was just to our right. Meredith’s smile was nervous, but she seemed excited as she went to see what was inside. I was relieved to see students were kicking and batting balloons around, reliving the glory of their elementary school days.
After 20 or so minutes, the dance music started throbbing and all the kids molded into a nondescript mass of teenagers jumping up and down to the rhythm and pumping their fists or open hands skyward. There were very few kids with obvious dates here and a scant number of corsages. Things have changed so much with high school dances and, thank God, really.
Meredith spotted some kids from her special education class and the four or five of them stayed in exactly the same area all night long as if they were behind an invisible barrier.
I laughed as I watched Meredith do her signature twirl and her friends smiled at her finesse. I had hoped kids from outside of special education who recognized her in all the chaos would stop by, but it never materialized. I still hold onto that part of her life, but, as she gets older, I see her enjoying her time with other kids with intellectual disabilities just as much. Still I wondered if Meredith wanted to be with the kids who were dancing in the big group or friends she might have remembered from middle school. I couldn’t tell if it made her sad.
But at the end of the night, one thing was clear: Meredith didn’t see herself as separated from the majority, she saw herself as joined with the few, a solidarity no doubt felt by many students that night, from the Fine Arts Academy to the football players to the kids who think physics is fun. There are many cliques for many reasons, but Meredith’s just happens to be because they all have disabilities. It’s to Meredith’s credit that she has never thought that unfair.
I won’t go to the homecoming dance next year because Meredith can clearly take care of herself. That ascent up the bus steps every morning is just the beginning of her more independent road. I’ve kept her at base camp for as long as I can, but maybe it’s time to let her climb higher without me.
From August 2012:
Confident she’ll find her fit in school
Figure this one out.
My daughter collects puzzles, so when I found a missing piece on the floor, I asked her jokingly which puzzle it belonged to.
“It goes to Olivia, ” she said without hesitation, referring to a puzzle with a pig on the front.
I found Olivia with about six other puzzles she hasn’t worked in months and held the missing piece up to the box. The piece was sky blue and had just one squiggle across the top, so there were few clues. After comparing it to the actual pieces, I got a match.
Out of thousands of pieces Meredith has seen in dozens of boxes, she narrowed this piece down to one box.
How weirdly amazing is that?
It would be impressive for a typical teenager, but for our daughter Meredith, it’s completely stunning because her brain is built a little differently.
According to her diagnosis, she is missing her corpus callosum, a band of millions of fibers connecting the two hemispheres of the brain. She also has a smaller cerebellum, which controls coordination and precision.
It’s hard to explain to her friends and teachers what she is capable of, but I do know she is so much more than the sum of her parts.
Some of her peers know this, but it takes patience to understand why she can be so talkative yet often cannot say her name when asked. She might refer to her sister as “blue shirt” all day because that’s what her sister is wearing. It’s taken years for her to be able to say the word “please” and yet she said “bon appétit” to the cat one day with no prompting.
This quirkiness was at the forefront of my mind recently as I entered the halls of McCallum High School for Meredith’s ninth-grade orientation. Are high school kids going to understand her? I tried to hang back from Meredith so it was not so obvious she was with her mother.
My plan failed almost instantly as Meredith really needed me to pull out her chair in the cafeteria because it was a tight space and moving the chair was awkward for her.
We sat across from a male student quietly working his Sudoku puzzle.
I saw a few of Meredith’s classmates, but they were all chatting, and the most useful thing I could do was take mental notes on their fashions so Meredith and I could shop correctly. Meredith will mainly see her regular education peers for lunch, an elective and when student mentors or friends come to her classroom where she takes special education classes tailored to her learning style.
I looked at Meredith and could tell she was full of anxiety, and so was I. Maybe I shouldn’t have brought her, I wondered. Maybe it wasn’t a good thing to be the girl with the mom. A welcomed break in my mental torture came with a question from the male student with the Sudoku puzzle.
“What are McCallum’s colors, Meredith?”
Yes! A student was engaging with my daughter. OK, I was so smart to bring her. Meredith didn’t answer – blue and gray – but the initiation of a conversation made my day.
He told us about being accepted to orchestra at the McCallum Fine Arts Academy. To see his enthusiasm and effusive description of a program he barely knew told me there was going to be a lot of passion here, and that was a good sign. I had so many questions for him, but the grown-ups in the room had other plans.
Meredith and I were given a list of questions to be used as “ice breakers” for the students to get to know one another. I knew Meredith would need cues to answer some of the questions, and one student, who will be a dancer at the academy, gave her extra time when he asked about her favorite superhero.
“SpongeBob, ” she said.
They both laughed.
Our questions were cut short by the scavenger hunt, a romp across campus where we learned about teachers and room numbers and the building’s layout.
The scavenger hunt took us up and down hallways, around portables and over to the gym. We learned names of teachers and counselors and the location of in-school suspension. I could see Meredith was getting a little tired.
“It’s OK, Meredith. We can leave anytime.”
“No, I’m OK, ” she answered assuredly.
“High school is going to be cool, ” I said.
“Yeah, ” she said as a smile spread across her face and she moved purposefully down the hall to join the other students.
The orientation must have felt like a giant puzzle with moving pieces to Meredith, but she has a place here.
From Jan. 2012:
Trip to roller rink changes perspective
A physical therapist and I recently agreed that my daughter Meredith, 14, had accomplished enough with her walking and muscle strength through the years to end our weekly visits.
My younger daughter Caroline asked the most obvious question: “What are we going to do on Tuesday afternoons?”
I’ve spent more than a dozen years learning about muscle prompts, motor sequencing and stretching, all the things needed to help Meredith walk better, bend more easily and improve coordination. This new decision isn’t just a change in schedule, it’s the end of a era for a mom who made hundreds of phone calls, met dozens of doctors and hired handfuls of therapists from different disciplines to assess and fix my daughter.
Professionals in this world have become friends to me and my husband as we’ve coped with the effects of her rare brain anomaly (agenesis of the corpus callosum), a structural difference where the two hemispheres are missing connecting fibers, leaving no bridge for information to pass from one side to the other. This has caused an uneven gait that gives her ponytail a sassy swing. It also forced us tocorrect her crooked back (scoliosis) by fusing steel rods to her spine to keep it straight. She began walking and talking at 5.
The real icing was when she started riding an adapted bike a year ago. It was nirvana for the whole family to see her have a set of wheels she could actually use.
So when the glass doors of the Dell Children’s Therapy Program closed behind me, I had exactly one sobering question for myself: Is this really as good as it gets?
Days later under a spinning mirror ball and the rhythmic beat of Donna Summer, I got my answer.
As fully confident as I have ever seen her, Meredith helped us lace her up her roller skates for the first time. We lifted her into a standing position, and she had three adults (without skates) helping her out to the rink with the aid of a plastic walker used by first-time skaters.
Meredith stepped onto the rink and I noticed my jaw beginning to clench.
“Oh no, oh no, oh no, ” she said making me want to jump out in front of her to break any potential fall, but Meredith wasn’t interested in being helped much. She just wanted to go, go, go. Her shrieks of joy seemed to be as much from the sensory smorgasbord around her – music, fog, lights – to the fact she really was doing this without much help.
“Keep your feet in, sweetie, ” I told her when her stance became wider than her hips. Then I tapped the side of her foot gently throughout the first lap to remind her. “Oh my God, ” I said to my husband Jim. “She’s really doing it!”
On the second spin we went around the outside the rink on the carpet – Meredith’s idea – so we could watch the skaters without worrying about looking at our feet. This was surprisingly unnerving given the number of skaters coming toward us at lightning pace and slamming into the handrails. Meredith was not put off.
Then – of course- the Hokey Pokey music came on, causing a jolt. Like a school of fish, the skaters abruptly stopped, then headed to the center of the rink. The lights seemed brighter, the music pulsed even harder and the fog spread across the ceiling and descended with all the subtlety of freight train.
I abhorred the Hokey Pokey when I was a kid. The “shake it all about” was just a prelude to a fall for me.
Meredith skipped it this time around, but I could see her wheels turning, planning out her next visit. One day she will put her right foot out and in, then her left foot in and out, and she will do so under a mesmerizing blue light and a Donna Summer beat.
I watched Meredith go around another time with Dad. The mirror ball tossed dappled dots onto the floor, giving the appearance of a night sky. Meredith, all grins and awkward legs made me realize the answer to my question.
Is this as good as it gets?
I have been trying to fix my daughter since the night of her diagnosis. Maybe it’s time to stop and appreciate the beauty of what she has become.
From May 2011:
Two daughters, two ways to take a bite out of the Big Apple
NEW YORK – The climb to the first level of America’s most recognized landmark takes exactly 24 steps once you get off the elevator.
That is surely not the most remarkable fact about the Statue of Liberty, but this family’s success on vacations is measured not just by the entertainment value, but by technical difficulties.
Our younger daughter, Caroline, 10, has been wanting to go to the statue forever, so she is not defeated by the line at security, the ferry wait and the bag check before arriving at the statue.
Our older daughter, Meredith, 13, has some physical and intellectual disabilities, so all the lines getting to the statue are annoying to her, as they would be for many of us. But unlike most people, she uses only one eye at a time and has leg muscles that don’t always keep up with the fast pace of tourists. Meredith also prefers a detailed description before each activity to alleviate her anxiety, and trips like this one are always full of surprises. I’m amazed that after all this, she still goes cheerfully.
Caroline has always been practical when it comes to her sister, helping when it’s needed and standing back to cheer when her sister does something we never thought possible. This would be one of those trips.
“There it is!” Jim says as the ferry neared the statue.
“W-o-w, ” Caroline says, stringing it out.
“Look, Meredith, ” I say. “What do you think?”
She answers with a succinct “good.”
Once we dock, we leave the ferry and walk about 20 yards until we are stopped by the park ranger. After he carefully studies Meredith’s backpack, this burly, fierce protector of the flame takes out a Sharpie and makes a happy face on my ticket.
From there we board the elevator, and the girls become more excited. It does, however, take a mental adjustment to ride up the pedestal of a greenish lady, stopping just short of her robes.
We are just exiting the elevator when we hear the daunting words from the elevator operator: “Now, you know there are 24 steps up to the base. You can do that, right?”
Jim and I exchange a glance that can best be described as “Noooooo.” But we tell the operator that it will be fine.
We are tremendously proud of Meredith’s ability to use stairs, but the many tourists here – as we predicted – do not share our enthusiasm. Many families wait, but others speed past us like they were chasing a perp to the crown, their backpacks brushing us along their way.
“Good job, Meredith!” Caroline says when we got to the base.
We all walk out on the platform to see a stunning view of Manhattan. When you look straight up, you can see various parts of the statue at all different angles. Sometimes you can see the great curve of the robe, the bottom of the torch or her sandal. Caroline and I both laugh because she has such a nice pedicure.
I later join Meredith on the platform while Caroline explores with her father. Meredith finds it hard to balance while looking up, so we talk about the skyline and the wind whipping around the statue instead. My girls live in two worlds sometimes, but it’s hugely important to take on things as a family. We track our success one attraction at a time.
The next day, we hit the American Museum of Natural History.
Caroline, our budding paleontologist, is downright giddy. Meredith is somewhat excited because her sister is, but we won’t know until we are in the thick of Fossil Hall what each of them will take away from the exhibit.
We shortly learn that there are more than 600 specimens on view, 85 percent of which are actual fossils and not casts.
Caroline soaks up everything as if her future dissertation depended on it. I imagine Meredith sees the exhibits more like this: Dimetrodon (a 280-million-year old gnarly looking lizard lookalike with a puffy sail), Xiphactinus (a 70-million-year-old vicious fish bearing a bulldoglike expression) and Tyrannosaurus rex (that magnificent theropod with the 4-foot-long jaw and 6-inch teeth).
Meredith is initially quite willing to be awed by the dinosaurs jumping out from the ceiling, glass cases and walls, but by the last room, she is fatigued and ready to leave. Who wouldn’t be after more than 600 exhibits?
“Oh, do we have to see more dinosaurs?” she says, stomping her feet.
Just a few yards away, Caroline looks up in awe (or maybe in panic) as we take in the final dinosaur, T. rex. It’s in a running stance, and it takes no imagination to feel its breath at your back. None.
As we exit the museum, Caroline directs us to Central Park across the street.
Meredith immediately spots a bench to rest her body as Caroline begins climbing the boulders a few yards away.
This is really the only time they truly are apart for the entire trip. Even though there are some differences in stamina, they both find moments to remember individually and together. Meredith is often seen by strangers as the other sister, the one with disabilities. Today, I see her as the sister who just conquered New York City.
From Jan. 2011:
Joy of writing not imagined 13 years ago
When I opened a box in the attic recently and pulled out a candle shaped like a snowman, my heart rolled over, sending me back to a day 13 years ago when my definition of motherhood changed irrevocably.
The candle was a gift for my daughter Meredith, who was 6 months old at the time. She had just finished her MRI scan and my husband, Jim, and I were comforting her in the recovery room.
Meredith’s eyes had been crossed since birth, and the MRI was ordered to see if there were any neurological reasons for this. Much to our relief, both her ophthalmologist and neurologist agreed that the MRI would probably show nothing and her eyes could be fixed with a simple procedure.
As we began packing our things after the scan, I noticed two technicians were pointing at the screen and whispering. I studied them intently and nervously. Why are they whispering? Then they called us over and explained the different parts of the brain, but mentioned no problem. At one point, we even laughed.
When we were leaving, there was a flurry of activity. “Please wait, ” the technician said smiling. “I need to get something.”
She reappeared with a snowman candle. He was made of two balls of wax and a gold top hat to match his gold scarf and buttons.
We said goodbye and headed out into an unusually cold December afternoon hoping to get the results in a few days.
We got the call that night.
A neurologist we had just met the day before told us our baby was missing nearly all the fibers connecting the brain’s two hemispheres (agenesis of the corpus callosum). It was anyone’s guess how difficult her life would be intellectually and physically.
Reliving that day is painful at times, and I’ve thought about giving the candle away, but I think I’ll keep the snowman candle as my symbol of progress and my consolation prize. It’s not a gift I wanted to receive, but something that marks the journey.
I wish I had known then that Meredith’s accomplishments would get me past her deficits. I wish I had known that a sister, Caroline, would come into her life and become the glue that holds our family together.
The new year has already started with a life-changing skill for Meredith.
She brings home a steady stream of papers bearing her handwriting. Her letters are tall and lanky, but we can read her name. More recently, Meredith brought home a paper with “Mom, ” “Dad” and “Caroline” written on it.
If your child does this in kindergarten, it’s a moment of celebration.
If your child does this in seventh grade, it’s a moment when you lead your husband to the paper on the refrigerator and he shakes his head and the emotional bulk of your daughter’s achievement is intensely shared, but few words are spoken between you.
Not so much for Caroline. “Meredith wrote my name!”
Caroline, 10, has become increasingly involved in Meredith’s life, helping her hone her new academic skills. Recently I told Meredith that she had homework, and Caroline was more than happy to help. The two sat at the kitchen table for 20 minutes, then brought out the paper with Meredith’s writing.
What the two don’t realize yet is that writing words can lead to sentences, and that has the potential to open up a completely different future for Meredith, adding a layer of independence I never imagined.
Some years Meredith moves pebbles, but this year it will be a mountain.
From Sept. 2010:
13-year-old in for the ride of her life
As my daughter Meredith gets older, I’m often asked by friends and professionals what plans I have for her after she graduates from public school. Where will she live? Can she live alone? What kind of job do you think she can do?
She just turned 13.
Meredith has physical and cognitive disabilities, and these questions either catapult me into a panicky planning session or an emotional abyss or both.
But that’s changing.
I never dreamed it would take just one season – this past summer – to give me a sign, an inkling that my daughter absorbs far more around her than I could have possibly realized. Her capacity for mastering new skills for independence has never been higher.
My first surprise came this July when Meredith attended an overnight camp offered by the Texas School for the Blind and Visually Impaired. Activities changed every day, but still Meredith acclimated to this rather quickly and made new friends. When I was a younger mother and heavy with concern over her future, this kind of excursion was the stuff of dreams – unrealistic dreams – I thought.
This camp was apparently the primer for Meredith’s second summer camp in Center Point, near Kerrville. Called Children’s Association for Maximum Potential (CAMP), the program matches the camper with an appropriate volunteer for the entire week.
Meredith would be doing all her activities and meals with Caitlyn, who is the calmest and most capable teen-ager I have ever met. I was terrified at how Meredith would do so far from home, but my daughter was intrigued from the moment we arrived.
After going through all the camp checkpoints, we walked to her cabin with Caitlyn. The two hit it off immediately, and Meredith began her usual round of questions. It became evident Caitlyn had a bottomless tolerance for answering them.
My husband, Jim, our daughter Caroline and I unpacked Meredith’s things and made up her bed. And them something horrifying happened: Meredith wanted us to leave.
Leave? I’ve spent literally thousands of hours watching her in physical therapy so that she could learn to walk. We’ve been through leg braces, a chin strap, an eye patch and a major back surgery.
So, where is the love? The gratitude?
It’s not here in Center Point, I can tell you.
As we gave our final hugs and filed out of the cabin, I heard Meredith say she sure was glad that “those people” had left. And without a beat, she resumed her questions for Caitlyn. It could not have been any easier.
Once back in the car, my mother worry set in as I began the excruciating ritual of what might happen while I’m gone.
What if she fell off the horse? Would the canoeing be her undoing? I worried that her rapid-fire questioning might land her in time out. Meredith can ask 25 questions in a single hour – all worthy of an answer but exhausting for the recipient.
Worry. Worry. Worry.
We returned to Center Point five days later, and it was clear Meredith had a wildly successful week. There were many closing activities, including awards. Much to my surprise and excitement, they read out Meredith’s name. She was getting the “Belle Award.”
I wonder what that could be? Reading from the certificate, the counselor said it was an award for “her quest for knowledge of everything and everyone around her.”
I almost choked on my water; you have to love a camp with that kind of humor. On the way back to the parking lot, several camp staffers asked Meredith if she had any questions. Meredith laughed at the teasing.
Maybe next year Meredith will win an award in archery or another camp sport.
If not, she will certainly know everything about archery, including things other people didn’t know about it.
Summer Surprises, Part II
When I was a kid, nothing spelled freedom like a bicycle with a banana seat and purple sparkly streamers dangling from the handlebars.
I was all set to get a bike for my daughter Meredith last year when she was 12. She loves scooters, tricycles, bicycles and anything with wheels. Riding a bike has been the activity Meredith has most wanted in her young life. Every time her sister is in the driveway on a bike with friends, Meredith has grabbed a scooter or tricycle and straddled it, but she’s never been able to complete the rest of the steps. It has become a frustrating why-can’t-I-be-like-everyone-else moment over and over.
I had seen adult tricycles in our neighborhood, and that seemed like the perfect solution for Meredith’s balance issues. Jim and I went to a bike store, and the staff was completely solicitous of our request, offering to adjust the bike for Meredith. She wasn’t entirely on board, so we went outside to the parking lot and Jim held the bike so she could get on.
I should have known things were not going to go well as she struggled and used body language that told us this was not her idea of a fun Saturday afternoon. But I have always tried to introduce things that would help Meredith enjoy typical activities regardless of her disabilities.
And, on this day, that would have been my mistake.
We tried several times to get Meredith to put a foot on the pedal. Tears began streaming down her face and we knew it was over.
Jim escorted the bike back to the shop, and the girls and I went to the car where my younger daughter, Caroline, began consoling Meredith. I stood outside the car and shielded my face from the girls as tears made their familiar trip down my face.
Flash forward to this summer.
Meredith is participating in physical therapy in the rehabilitation center at Dell Children’s Medical Center while I’m sitting in the waiting room with Caroline.
I’ve just closed my laptop and I’m digging around for my magazine. I’m interrupted with a “Hi, Mama!”
I look up and in a split second, my hands go to my face and I audibly gasp.
Meredith is wheeling toward me on an adapted bike. It was unfathomable.
“Meredith, my God!” I said, getting the attention of the entire waiting room.
I made a beeline toward her and gave her a hug and then in a smaller voice laced with emotion, I said: “You’re on a bike, Meredith. I’m so proud of you.”
Meredith beamed. Her sister cheered. We all stood there in the middle of the waiting room until her physical therapist, Margaret Garwood, suggests that we take our party out of the waiting room and into the halls of the hospital.
Walking quickly by Meredith’s side to keep up, I feel the need to announce my daughter’s well-deserved milestone to anyone coming my way. “I’ve never seen my daughter on a bike!” I say to a staffer dressed in scrubs.
As I keep my cell phone at arm’s length taking pictures, Meredith picks up speed.
I watch her go faster and faster down the hospital halls, and the banana seat and the purple sparkly streamers disappear from my visual memory, giving way to a black foam-covered steering wheel and extra-long vertical pedals with Velcro fasteners. The seat has a back giving Meredith full support. It’s a thing of beauty, the girl, the bike.
Just like camp earlier in the summer, Meredith is discovering new skills and a fierce independence.
So, where will Meredith be in a few years?
Making her own decisions. On a bike.
From March 2010:
Daughter was mostly invisible to middle school classmates
How big can you make a red flag? I’m going to need a lot of fabric.
My daughter’s physical therapist, Amelia, explained to me recently that while she was helping Meredith do a stretch, she asked her to play a game choosing action figures from a basket. Meredith’s first choice was a figure of a little girl using a wheelchair. Amelia then asked Meredith to choose several friends for the girl.
By the end of the game, all the friends chosen by Meredith had disabilities.
One can come to many conclusions, but it appears to me that my daughter, who is almost 13, is getting the message that people with disabilities are apart and separate from those without. And why would my daughter come to this conclusion?
Meredith, who has physical and intellectual disabilities, has been invisible to the majority of her sixth-grade classmates this school year. She goes to a science lab once a week and an art class, but the rest of her academics are in a self-contained classroom.
I’ve written many words during the past year about my anxiety about what might happen to my daughter’s level of inclusion once she got to middle school. I had hoped that she would see many of her friends from last year in the halls and cafeteria and before school. But my assumptions apparently were not based in reality.
I was told the hallways are too crowded for it to be safe for my daughter. Perhaps that’s true, but it seems to me that with one of the available aides, Meredith could get through the hall just fine. Her section of special education is called “Life Skills, ” so I figured this type of experience would be representative.
Then, there was the wait before school.
Meredith is the only kid in her classroom who does not take the bus to school. It’s a matter of convenience and tradition that most students in special education who take a separate bus will enter the school from a side door or back door. This means when Meredith and I are early – we usually are because of her sister’s schedule – we wait in front of a locked door until an aide arrives, which is usually not for 15 minutes.
In December I began to realize the full impact of this rule. Meredith and I were driving to school as usual, and we passed the line of cars that were dropping off students early at the front entrance.
I drove around to the back of the school and waited in the car. There was a break in the rain, so Meredith and I bolted for the back door and stood under the overhang. I pulled in Meredith and her backpack to avoid the drips, and we waited.
And then I got the wake-up call.
“Why do we have to wait here?”
Fewer words have started revolutions, and this was going to be mine. Meredith’s question gave me shivers up my spine, and it wasn’t because it was cold and rainy. Why was I being so compliant with a rule that hindered access for Meredith?
Even Meredith was beginning to realize she had an unfortunate ranking in the middle school hierarchy. While students in regular education arriving early are allowed to wait in the dry, climate-controlled cafeteria chatting with friends, Meredith must wait outside behind a locked door. Alone.
I wondered if the rules during lunch time also were excluding Meredith from her general education peers. So I made a visit. As I sat there at the end of the table, Meredith sat quietly with her three classmates in special education. Nobody conversed. Nobody laughed. Nobody else wanted to sit there.
Just months earlier in the fifth grade, Meredith giggled and asked a million questions of her classmates. After leaving the lunch line in elementary school Meredith would choose where she wanted to sit. It was a chance to make a social choice – something her classmates did several times a day. When I visited her lunch period in middle school and found out that she sat at a table that was virtually segregated from the rest, I was horrified.
The middle school staff told me that Meredith had the freedom to sit wherever she wanted. Given that her class went to an empty cafeteria for the first 10 minutes and left early and that the majority of kids during her lunch period were in eighth grade, the offer did not seem workable.
Next I visited the library, where I found out Meredith had never checked out a book because that is not part of the traditional curriculum for students in the Life Skills classroom. The fact that one of the most accessible places in the school is excluded from my daughter’s regular routine because she has disabilities is unacceptable.
I’ve always tried to be reasonable when it comes to different rules for Meredith. I am a realist in my expectations, so when advocates have offered to come out with pitchforks, I have always said “give it time.”
Time is up.
Meredith is in week six of her more inclusive schedule at Lamar Middle School. I have to credit the special education staff for coming up with a plan to make Meredith’s day look more like that of a typical student.
My daughter now walks in the front door and joins a teacher’s aide, who takes her to the cafeteria and then to another sixth-grade meeting place until the bell rings. The same aide also takes her to a different lunch period where she can see her friends. I spoke to the librarian, and she’s establishing an area where Meredith and her friends receiving special education services can check out books on an appropriate reading level.
Meredith hasn’t verbalized a lot about the changes, but she doesn’t have to. Every time she runs for the school’s front door I can sense her excitement, and when she names a new friend she met at lunch, it gives us much to talk about.
I think students in a typical classroom or lunchroom can learn as much from Meredith as she can from them. If Meredith is to become a productive citizen, then there must be a paradigm shift in the schools regarding inclusion, especially in the middle schools.
And, based on her appearance at a recent meeting for parents with children in special education, Austin School District Superintendent Meria Carstarphen appears to be looking for change too.
“I’m a firm believer that with the right supports and a dedicated attention to our work that we will be able to do a better job of serving our students with special needs but, more importantly, including them in all the things that provide our students with a much more comprehensive experience in our schools, ” Carstarphen said. “That means including them in everything, not just academics, but our extracurricular activities, making sure they can be part of all the experiences that our other students have, ” she said.
I really hope so.
My favorite memory of Meredith’s fifth-grade experience was watching two of her friends in regular education squabble over who would sign her yearbook first. That observation might come from a teary-eyed mom feeling a sense of triumph, but it also comes from a reinvented, more proactive mom who thinks the bridge between two different academic programs should be crossed more often.
It doesn’t trouble me that kids see Meredith as a student who needs an aide; it troubles me when they don’t see her at all.
Open your eyes. She’s coming in the front door.
From Aug. 2009:
Middle school means letting go … a little
Summer break is all but over, and I still can’t accept the fact that my daughter has seen her last day of elementary school.
So, now what?
If you listen to the experts, the sweet fifth-grade girls will enter sixth grade and become irretrievably ensconced in cliques where they will take turns berating those not fortunate enough to be granted club membership.
So, seriously? I hope not. Sure, there are always the “mean” girls, but I like to think my daughter, who has physical and intellectual disabilities, will see her old friends and at least get a familiar smile.
Meredith made dozens of friends over her five years at Gullett Elementary School, and it was apparent at the fifth-grade graduation just how much those friendships have meant. She got loud applause as she crossed the stage.
When they called her name, she went straight up the steps with no assistance and marched right across the stage making the appropriate pauses to collect her certificate. I held my breath the entire time hoping she would do exactly what everyone else did. She didn’t walk till she was 5, but on this day, she closed the gap. It was the mother of Kodak moments.
But Meredith did not master this alone. It took every kid and every teacher and every therapist in the room to give her the start of a lifetime.
In many ways I’m deeply sad. It seems almost cruel that now that Meredith has hit her stride, she must move on to a dramatically different curriculum and school culture.
I suppose most fifth-grade parents feel this way regardless of whether their child is receiving special ed services or not.
I must pull back now … just a little … and let Meredith experience the same awkward middle school moments as every other kid.
My need to step out of the picture became more apparent to me as I was volunteering at the fifth-grade picnic at Northwest Park right after the graduation ceremony.
I wanted to run up to Meredith every time she was alone and help her find a friend, but I never had to worry for long. She found someone every time.
I decided to sit on a bench in the toddler area of the park and watch the picnic progress without tracking my daughter’s every move.
Once I looked up from my spot to see Meredith and an entire group of girls hanging out by the baby swings. As they dispersed, Meredith lingered. She couldn’t have remembered these were the same swings I used to take her to 10 years ago.
She pushed the back of the swing, and it moved a couple of feet. I wondered if she was remembering an earlier time or perhaps saying goodbye to one.
I’m hoping that even when her classmates make the inevitable transition to middle school life, Meredith will find that special friend who sees past her awkward gait and persistent questioning.
I’ve been Meredith’s advocate at school for five years, and I’ve seen her grow into a very social and capable young person.
She will carry on in middle school and muddle her way through with everyone else.
Still, I remained on my bench thinking about the contrast between the sweet familiarity of the world we’ve been in and the anxiety I have of the world we are entering. How are we going to do this?
I looked back at Meredith as if to get an answer, but she had already moved on.
From April 2009:
A new set of ups and downs for child with different abilities
I’m on the upper level of Highland Mall hiding between Children’s Place, a clothing store, and Radio Shack.
It’s a weekday morning with few shoppers, so it’s a perfect time to spy on my daughter Meredith. As a fifth-grader with a visual impairment, she comes here once a week with her therapist, Marjie Wood, who is trained in orientation and mobility therapy with the Austin Independent School District.
Marjie and Meredith have been together for a decade conquering obstacles that most of us don’t even give a second thought. Meredith didn’t walk until she was 5, and that was on even surfaces. It took another two years for her to traverse grass, potholes and wood chips, and she still sometimes needs help to get on and off curbs.
One of the reasons she sometimes stumbles is because her legs are uneven and compensating for the steel rod in her back sometimes throws her off balance. But it’s her vision that might have the biggest impact on her mobility.
Meredith was born with the center part of her brain underdeveloped, and for reasons no one can really explain she cannot use her eyes together. She uses them one at a time, which is laborious, but it works for her. This makes things like stairs particularly challenging because without binocular vision, she loses much of her depth perception.
With all this going on, it’s remarkable how Meredith finds the energy to start the day, but here she comes into the mall, undaunted. The first thing she does is look for the mall map. She’s right below me, so I bend a little to hide behind a plant.
Marjie glances up at my post and spots me. Game on.
Meredith makes a beeline for the escalator. This is why I am here, because Marjie says Meredith can now get on and off, but I’m skeptical. In fact, I avoid escalators when I’m alone with Meredith because I’m worried she’ll lose her balance and send us both tumbling. It also takes Meredith a full two minutes of standing at the escalator to work up the nerve to get on, and then usually I end up lifting her on.
And so today I watch and, hopefully, see for myself what Marjie has been telling me for weeks.
I’m guessing at any second Marjie will get in front of her and start giving her verbal cues to coax her on the escalator.
But my guess is wrong. Marjie stays behind her and with virtually no prompting, Meredith hops on the escalator without a nanosecond of hesitation.
Huh? My hands are over my mouth, and I’m whispering to no one in particular , “Oh My God.”
Marjie and Meredith are about half way up when Marjie turns around to find me and our eyes meet. I throw my hands in the air, and Marjie flashes me a thumbs-up sign. Marjie and I have learned how to communicate about Meredith with virtually no words spoken between us. It’s a true gift to have a therapist who loves your child as much as you do, but it’s a greater gift to have a therapist who can read the mother’s mind.
I continue to spy as Meredith gets off the escalator – an equal challenge – with absolutely no trouble. Then she runs over to the down escalator.
Marjie follows, and the two begin to look like a game of cat and mouse as they go up and down, up and down.
I can’t help but see the metaphor for my life here.
Meredith has become a different kid this year in fifth grade, her final year at Gullett Elementary School. In addition to her escalator surprise, she recently began tracing letters, meaning some day she might write her name. Her social life is beautifully hectic. She can now carry her own lunch tray, and she proudly sits with her friends in the lunchroom buzzing with conversation. Meredith’s world, largely created by Principal Janie Ruiz and teacher Bonnie O’Reilly and a classroom of energizing fifth-graders, is defined by a seamless culture of inclusion where kids with disabilities and kids without disabilities learn side by side.
But despite all these poignant leaps in physical and mental development, I was told in a recent school meeting that Meredith will be getting a new label next year: “Mentally retarded .”
I was told I could think it over. The reasoning is that the label better fits her disabilities and that technically the definition is correct for Meredith based on her school testing. I tried to think about it logically on my drive home that day, but all I could think about was that other label – “retard” – and how that was going to feel if anyone ever used it to refer to my child. By the time I was at the corner of Koenig Lane and Burnet Road, the tears were racing down my cheeks. And that would be the down of my escalator.
It’s not just that my baby is growing up; it’s that so is everyone else. It’s a mixed bag of grief and hope for a parent who has to reconcile the idea that while other kids are continuing to move ahead in academics, his or her own child has not kept pace and will never catch up.
Meredith learns differently, but I didn’t know until I visited her middle school that vocational activities are pushed for special education students as early as sixth grade. A child like Meredith, who has spent 60 percent of her day in a regular education classroom, will be excluded from nearly all these same classes in middle school.
She won’t see her friends nearly as often either, because her friends’ world will become one of advanced placement classes and extracurricular activities. There is no pity here, but in coming months I will have to explain to Meredith how different her day is going to look. To be fair, Meredith might not be in the classroom with her peers in regular education all day, but her curriculum is inventive and exciting, and under her special education teacher’s skillful guidance, I know she will learn much.
And if I know my daughter, she will tackle this new experience with hundreds of questions for her teacher and an unapologetic enthusiasm for learning the names of all her fellow sixth-graders. I’m not sure what she’ll do the second day.
Back at the mall, I continue to watch in amazement at Meredith’s escalator prowess. I don’t see a daughter with mental retardation. I see a daughter who at times can demonstrate the mental concentration of a tightrope walker. I see a daughter who is blessed with the curiosity of a scientist and the devil-may-care attitude of a fifth-grader. I see a girl who has won the attention of a classroom full of fifth-graders who go out of their way to help her on the playground. They invite her to birthday parties, and they are bummed out that she will not go to their magnet schools next fall.
I understand labels exist for reasons of testing and placements and other hard conclusions, but it’s my hope this new label for Meredith will remain in the file cabinet.
From May 2008:
Comfort and progress from a silly old bear
Nothing brings three generations of family together like a teacup spinning out of control.
It had been 50 years since my mom, Adrienne, first had her turn on the teacups at Disneyland, and she was relishing the chance to live it again with her granddaughters Meredith, 10, and Caroline, 7.
So the three of them, along with my husband, Jim, and I, hopped aboard and managed to squeeze into one teacup at the original park in Anaheim, Calif. Predictably, the squealing commenced just as soon as the ride began. One thing I didn’t know is that while the cups are moving around the track, they also have a wheel in the middle that you can turn to make them spin faster on their own axis. Faster and faster, my daughters commanded.
I clung to the side of the teacup frantically searching the horizon for a focal point to steady my increasingly churning stomach. When it was finally over, it was clear to me that the only way to enjoy Disneyland was for the family to divide and conquer. I would not be doing any more rides.
But before we could get together our list of priorities for who was doing what, Caroline spotted a character.
“Donald Duck!, ” she said excitedly.
At Disneyland, you never know when the Disney characters are going to show up, but when they do, it’s mayhem. Lines form, autograph books are thrown open and the digital encapsulation begins.
“Let’s get closer, ” I said as we joined a group of kids in the middle of the faux town square who were playing a game of “red light … green light” with Donald.
Caroline and I joined in.
“This is so cool, ” I said.
We both giggled every time the “red light” call forced Donald to come to a screeching halt, big duck feet pointed outward, tail feathers swishing back and forth.
As the game came to an end, Caroline and I turned and headed back to where the rest of our family was waiting. I immediately spotted my older daughter, Meredith.
There are few things in my life more heartbreaking than seeing Meredith, who has special needs, become so overwhelmed with a place that she cries.
“Are you OK, Meredith?” I asked, bending my knees to get to her level.
She dropped her head and buried it in my chest and began talking in a tiny voice.
When I asked her what was wrong, she said almost in a whisper, “I don’t know.”
Then she grabbed my sleeves, clinging to them, and stamped her foot.
We decided that we should get a special pass for the family, which I thought would allow us to get to the rides more quickly and avoid standing in line. Waiting in line is a bit harder for Meredith physically and emotionally than your typical kid.
I went to the office and told the Disney employee that I had a daughter with special needs.
“What kind of special needs?”
I’ve been explaining for 10 years that the middle part of my daughter’s brain is missing, but it never gets easier. Telling a complete stranger this news is as awful as the first day I got it.
But I pressed on with other details.
“One leg is longer than the other, she has no depth perception and she has a steel rod in her back, ” I said.
“Well, ” the employee said, “Just what are your concerns for her on the rides?”
“It’s hard for her to wait in line, ” I said. “She has anxiety.”
“Can I see her?” the employee said. “Is she here?”
This was not happening. Was I really going to have to parade Meredith into the office so a Disney employee could decide whether “the happiest place on Earth” deemed my daughter worthy of a special pass?
We finally got the pass, but the employee said it would not get us on the rides any faster. She explained that if we showed it to the ticket taker, we’d be allowed extra time to board the ride, but that was it.
I would learn later from the folks at Disney guest relations that it’s a “common misconception” among parents that children with disabilities can automatically go to the front of the line. The special needs pass is just to alert the staff that your child might need extra help and it provides children in a wheelchair a more comfortable place to wait.
For our family, that was about as useful as Tinkerbell without her fairy dust.
But we are five smart individuals and we would just handle Meredith’s special needs ourselves. For the rest of the day, Caroline patiently explained all of the action to Meredith whether it was waiting for a princess to sign her book or what to expect on the Dumbo ride. It was really helpful in terms of helping Meredith’s brain process what was happening next. And, as a mother, seeing Caroline put a hand on her sister’s shoulder both literally and figuratively was something I’ll never forget.
My 70-year-old mom probably thought this trip was way more than she bargained for, but she was a trouper about holding Meredith’s hand, helping her on and off curbs and answering her 320 questions.
Meredith did really well, but few of us could have guessed what would be the Disney highlight for her.
She had largely avoided one-on-one meetings with the characters, but when I saw that Winnie the Pooh and his friends Tigger and Eeyore were signing autographs, I immediately pointed them out.
“Meredith, look!, ” I said. “It’s Winnie and Tigger and Eeyore.”
Meredith’s eyes brightened, and she quickened her pace to get in line.
“There’s Pooh, mama!”
Meredith adores Pooh. Though many of her peers have moved on to Hannah Montana or Harry Potter, she still considers Pooh a close friend. We have videos of Pooh scattered all over the house, not to mention several stuffed animal versions.
My husband, Jim, and I wondered how she would react. Would she stop in her tracks and become starstruck, or would she become overly emotional and cling to us?
Her sister went to Pooh first, giving him a hug. And then, with no prompting whatsoever, Meredith walked right up to his fat belly and said “Hi, Pooh!”
It was the quickest, most spontaneous greeting Meredith has ever delivered. Period.
No one in line knew that it had taken 10 years of work with teachers and speech therapists and family to deliver such a greeting completely without being prompted with “Can you say hi, Meredith?”
My heart was heavy with emotion as I mouthed “Oh my God” to Jim.
It was the perfect ending to our day, and we decided we ought to head back to the Disneyland Hotel because it was getting late. And how could we outdo a meeting with Pooh?
The girls had no problem snuggling into their beds and calling it a day.
And what a day.
Jim and I headed out to see the Disney fireworks just like the couple in the commercial. Though our day didn’t exactly resemble the brochure experience, we found plenty of reasons to think that the “happily ever after” part is within reach.
From Jan. 2007:
New steps forward
I had first noticed a couple of summers ago that the straps on my daughter’s swimsuit were uneven. I just figured it was bad posture.
“Stand up straight, ” I’d tell her.
By last summer, her entire rib cage on the right side was jutting out and her spine was starting to form a “C” on her back, medically known as scoliosis. My sweet girl, who has special needs including poor muscle tone, looked like a tomato plant that needed to be staked. I couldn’t really ignore that. And neither could her orthopedist, Dr. Jay Shapiro.
My husband, Jim, and I spent an entire year with Shapiro measuring her curve every three months. It kept getting worse. By last fall, surgery was being mentioned as not just an option, but a necessity because letting her curve go could lead to pulmonary problems down the road.
Even more disturbing was the news that after years of compensating for a crooked spine, Meredith’s balance might be changed so much by the surgery that she’d have to retrain her brain on the mechanics of walking — a frustrating possibility for a little girl who didn’t walk until she was 5.
It was ironic to me that for nine years since Meredith’s birth, I had been wishing for a way to treat my daughter’s developmental delays. I’ve prayed more than once for medical science to come up with a way to insert brain cells in my daughter, who is missing the center part of her brain. Now that we actually had a problem that could be fixed — a crooked spine — I was full of questions and doubts.
Just the description of the surgery made me wince. First, it would take roughly six hours to do the surgery. The “fusion” procedure would involve opening up Meredith’s back and attaching two rods to her spine using special screws all the way up her spine. Each screw would require that doctors drill a hole into her bone, then, they would place a bone from a cadaver over the existing spine bone and, eventually, the two pieces of spine would grow together, becoming one fused piece incapable of curving. The hardware would stay in Meredith’s back for life.
The procedure itself was just so invasive that I could hardly bear it. So I did what any distraught mother would do: I Googled the heck out of “scoliosis.” For days, I sat at my computer thinking more with my heart than my brain. Surely there was an alternative.
Jim and I took Meredith for other medical opinions, and although procedures varied, all the doctors agreed she needed the fusion surgery.
We spent weeks worrying about which procedure might be the best, and we flirted with the idea of getting the surgery done elsewhere, someplace like New York or Boston at more established medical facilities. But the more time we spent with Shapiro, the more we were convinced he was the doctor we trusted most. I realize now that sometimes you just have find a doctor you most believe in and let that professional soothe your anxiety.
We walked through a chilly garage and into Children’s Hospital of Austin at 6 a.m. on a Monday. At the front reception window in the waiting area, they gave us three wristbands, one for Meredith and the others identifying us as as her parents.
I didn’t realize until later that from here on out we would be referred to as “Parents of Meredith Hemphill” whenever there was news from the surgery team. We took a seat near the fish aquarium because I was looking for ways to distract Meredith. We tried to explain what surgery was, but thankfully, she remained mostly unconcerned about the enormity of what was about to happen.
It was important to her, however, that she have her beloved blue cat with polka dots named Dottie by her side. And before we knew it, the “Parents of Meredith Hemphill” were called to bring Meredith and Dottie back to the pre-op area.
“That’s a cool bed, ” Meredith said as the nurses wheeled it in front of our small waiting room. “It looks like a boat.”
Jim and I nervously laughed about that as we began the labyrinthine walk from pre-op to the operating room. We each held one of her hands as we moved the boat bed down the hall.
It was time for the final kiss. Meredith clutched Dottie and kissed us goodbye. The sedative she had taken earlier was working well to calm her.
I was terrified, but I managed to say goodbye without tears. Jim and I stood there as Shapiro and his team wheeled her away, their voices of reassurance trailing off.
We went to wait on couches in the breezeway that backed up to an outdoor courtyard, called the “healing garden.” My mom got out a book. Jim got out a magazine. I tried to do needlepoint, but I couldn’t really concentrate. At 9 a.m., we got word that prepping was over and surgery would start.
I could do little but just sit and watch the parade of doctors in long white coats, nurses in colorful scrubs and sick children. One child was brought in on a stretcher by paramedics. There were so many stories whose endings I would never know.
At noon, a family of nine sat down beside us. They huddled around an article in this newspaper about a drunk driver and a wreck. There were tears and hopelessness and a casserole. The family would hold vigil there all day.
By 1 p.m., I was working on trying to relax my jaw. It had been four hours, and we hadn’t heard anything from the surgery team since the operation started. I decided to go out to the healing garden. A few tears rolled down my face and my mother worry mounted. Maybe something had gone wrong? My heart pounded.
“Don’t you think we should ask how it’s going?” I asked Jim after I went back inside.
Then, as if I had telepathically connected with Shapiro, we heard the announcement from the waiting room again: “Parents of Meredith Hemphill.”
The surgery receptionist said, “They’re closing now. Everything is fine.”
We celebrated. We fired up our cell phones. My mom cried. I think I exhaled for the first time that day.
Less than an hour later, Shapiro showed us the new X-ray of Meredith’s back. The curve was gone. Zero. The surgery was a lovely success even if I was looking at all the screws and 14 fused vertebrae.
I hugged our doctor.
Only one parent was allowed to see Meredith in recovery and I walked into a room full of kids, some crying, others still asleep. Meredith was awake and clutching Dottie as she opened her puffy eyes long enough to see me and say in a very groggy voice, “Now what?”
“Nothing, sweet girl, you just need to rest, ” I said in the most soothing voice I could muster. Her face was expressionless and she was so still it scared me. I could find the beginning of at least four tubes and followed them with my eyes until they disappeared under her gown.
All told, she would have five lines, a catheter, 28 screws and two rods. Two of the lines were administering medicines to numb her back. A main line that started just below her collar bone was so important it was stitched to her skin.
She looked so miserable that I wanted to cry, but with the surgery over and so successful, I was elated. It was 2 p.m. and we’d now go with Meredith to the pediatric intensive care unit.
This is a humbling place. I immediately perceived Meredith’s problems were minor compared with those of the other children. As I roamed our part of the floor, I counted about eight rooms. At least three had infants covered in wires like spaghetti.
I was told the little boy next to us was “very sick.” And then I saw his mother, the same mother I saw grieving hours before in the waiting room. He certainly had more tubes than Meredith and a smaller bed. And I wanted to sit down and cry with his mother.
The PICU has changed a lot since the old days of no visitors. Now one parent is allowed to stay the night, but don’t expect the brochure experience. Though the staff was compassionate, caring and brilliant, it was still a long night. I sat up for eight hours in a chair, responding with soft whispers to Meredith’s every move and moan.
She would catch a few minutes of sleep, but there was always someone stopping by to check machines, blood pressure, tubes and her chest. Every time the respiratory team came in to have her breathe into a mask, Meredith cried and flailed as we held her down. Even Dottie the cat could not ease her fright over the mask, and Dottie had plenty of the mask treatments herself.
It was torture to watch, but I knew the mask was the first guard against Meredith getting pneumonia.
Blessedly we were released from the PICU the next day and taken down to the main kids’ surgery floor, which seemed like Disneyland by comparison. You could hear parents laughing at times, and the children were allowed to ride around the floor in wagons.
Jim and I were ecstatic because we got upgraded to a chair that folded into a bed, and we had a private bathroom. It was a virtual palace.
It was Tuesday and this would be home until Friday.
By Wednesday, most of her tubes were gone and my main worry now was whether Meredith would be able to walk again. The first time we got her out of bed, she just collapsed on the floor and would not use her legs. The next day, she put some weight on her legs, but nothing about her walking looked normal. Tears streamed down her face as she craned her neck upward, not understanding why her back wasn’t cooperating with her former gait.
By Thursday, I was in tears as well because it seemed our worst fears had come to pass. I just couldn’t imagine going through all the physical therapy and false starts that defined her early childhood.
What a difference a day can make. By Friday morning, Meredith was putting weight on both legs with two of us at her side. She was going to walk again, especially if it meant she could go home.
Back at home
These are Meredith’s favorite words lately.
“No, Meredith, you can walk.”
My favorite words.
And so the dance begins between how much Meredith really can do and how much she just wants to manipulate me. My husband and I are still helping her up and down the stairs and often carrying her when we are pressed for time, but other than that assistance, her gait is virtually back to normal.
Her best motivation seems to be the parade of 8-year-olds, including Lizzie, Emma, Bridget and Aisling, who have been visiting nearly every day. With her friends, Meredith is more willing to leave her stuffed menagerie on the couch for a walk.
The beautiful thing is that none of her friends have asked to see her back or even talked about the surgery. They just want to see the only Meredith they know: a funny, empathetic, engaging friend they have missed.
And so the big surgery that became my life for months is now over. We will all move on in this new year. Meredith will do so with a straighter back, and I, with a new appreciation for the resiliency and tenacity of my little girl.
From May 2006:
Forever awestruck by world’s greatest wonder: The magic of motherhood
YAVAPAI POINT, GRAND CANYON – It’s 6 a.m. and I’m sitting on a cold, hard rock. Camera in hand, I move closer to the edge of the canyon rim to see the sheer drop. There’s nothing between the end of my toes and the abyss.
I have my finger on the shutter release and it’s starting to get numb with the chill, but I don’t want to miss the magic. Gradually, and beautifully, the orange hues of the sunrise begin to light the canyon walls to my left. The beauty is stunning — and quiet. Quiet.
I wonder to myself how long it’s been since I didn’t have my daughters tugging at my shirt. I’m not sure at what point a mother of two young children on spring break ever finds peace, but sunrise alone amid the snowy cliffs of the Grand Canyon is pretty close.
Focusing in and out of the crevices, I try to spy the mule train along the trail. A bird catches my attention as it makes a soaring dive into the canyon, and my eyes follow it until it disappears somewhere beyond the rim.
I smile when I think that some 30 years ago my brother and I decided, at the spur of the moment, to take a hike into the canyon. We departed with two Dr Peppers, one Kodak instant camera and no idea what we were doing. Just two hours later we climbed back up the trail, tired and thirsty and full of tales about how “we almost made it to the bottom.”
I laugh at the memory and then decide to leave my quiet spot and head for the more popular overlook. I’m met by dozens of people, including a few families with children. They are already begging to leave. Sun’s up; show is over.
Admittedly, my girls would not have had any more patience at this sunrise outing, which is why I left them at the lodge with their Daddy. It’s funny how a natural wonder like the Grand Canyon can mean something different to every pair of eyes that sees it.
I sit down and adjust my camera angle so I can get a shot of a beautiful snowy cliff plunging into the canyon. It’s the same one my 5-year-old daughter, Caroline, spotted the day before.
The whole trip for Caroline has been about the snow. She flits and hops along the trail, jumping over snow piles and studying cacti at close range. She runs ahead to make a snowball and giggles as she tosses it my way.
Conversely, her 8-year-old sister, Meredith, who has developmental delays, walks haltingly, holding my hand and her Daddy’s tightly. Her grip is tense as she plans each step in the snow. About once a minute, her steps stop all together. “Carry me, ” she says in a tiny voice. And, so it goes for the rest of the trip; Caroline skips and jumps and Meredith worries with every step.
Although I sometimes think a family outing for us is like being on a subway with 20 stops before your desired destination, Caroline has become a sister who will not be deterred by Meredith’s differences.
The first morning at the lodge they dashed out to play in the snow. Caroline jumped in the frozen stuff and began running, watching the footsteps she left behind her with every turn. Meredith stopped abruptly at the edge of the sidewalk. I tried to help her into the snow, but I could see her anxiety peaking, so I sat down with her on the sidewalk.
Caroline started building a snowman, but also brought cupsful of snow over to Meredith and dumped them on the sidewalk. She went back and forth for 10 minutes and then eyed the snow mound facing her sister. “Now Meredith can make a snowman, too!” she said.
Meredith beamed and I leaned in to help her. And it was all I could do to not cry at the pure sweetness of what her sister had just done. They might not have bonded at the canyon’s rim, but, it turned out, they found other ways. For my girls, the best gift from nature was what they could share directly underfoot.
For me, it was seeing the Grand Canyon at sunrise and how much more beautiful things look to me as a mother.
From Feb. 2006:
Hard lesson in being different
I’ve written thousands of words — many published in this occasional column — about having a child with special needs. As a result, I’ve celebrated with family and strangers alike the first time my daughter Meredith walked (age 5) and the first time she said “mama” (age 4). Raising a child with delayed development is joyful, painful, exhausting and permanent.
Thankfully, this school year I can report the joyful part has been abundant. Meredith, 8, now spends up to two hours a day in a second-grade classroom with typical children.
She really shines during this time outside her special-ed classroom. Her teacher, Jayne Crawford, said it gives her goosebumps to see the other children help Meredith with the alphabet or be her “buddy” during a field trip.
For a child who has been through so much physical and speech therapy, Meredith is a thing of beauty to me as she ambles somewhat awkwardly about the playground with her second-grade friends, Emma and Lizzie. She wears her leg brace like a champ and she’s never asked why she has to wear it. I often wonder if she’s even aware she has differences.
Sadly, but realistically, I got that lesson recently.
A few months ago her Daddy and I bought her some New Balance running shoes. Granted, Meredith is still learning how to run, but she very much wanted the shoes because they had an “N” on them just like mine.
They’ve come to be known as “my N shoes.” She talks daily about her N shoes and is so proud of them. Her Daddy even wrote a song about shoes where he describes a pair of shoes and she has to guess whom they belong to.
Recently I had to take her shoes away for a few days. Her orthopedist had decided that putting a lift in one of the shoes would help her posture, which is unbalanced because of her uneven leg lengths.
Every day Meredith would ask where her N shoes were. I’d tell her they were being “fixed” so she could walk a little better. When I got the shoes back, I was thrilled at how great they looked. You could barely detect the lift. Knowing Meredith and her curiosity, she’d be disappointed that there was not more to talk about and she’d definitely want to tell Emma and Lizzie about them.
When we got home from school I put the shoes on the table next to the couch where she was watching TV. Although she was absorbed in “SpongeBob SquarePants, ” I knew the questions would be coming soon. She’d ask whether the N shoes would still fit over the leg brace. They will. She’d want me to explain how the lift was attached. Probably with glue, I’d tell her. And, the list would go on and on.
I went to get a snack ready and brought out grapes about five minutes later. Tears were sliding down Meredith’s face. Her usual smile was pulled down at the corners.
“Meredith, what’s wrong?” I asked.
“They’re different, ” she said.
“What’s different? The shoes?” I asked.
“Yeeeees, ” she answered between sobs. “Take them away.”
I knew then the hardest part of parenting was here and now on the living room sofa. Of all the difficult doctors’ visits, leg braces, chin straps and eye patches she has gladly endured, it would come down to a three-quarter-inch strip on the bottom of her shoe to finally rattle my girl.
I put the shoes away. Meredith continued to cry.
By dinner, she seemed to have forgotten about the shoes, but then in the middle of the night she called out for me. I climbed into bed with her and before I could even ask what was wrong, she said, “They’re different, Mama.”
We talked about it until she fell asleep just a few minutes later.
She wore her N shoes the next day and she’s no longer bothered that they are different, but my heart is still recovering from that night.
Meredith is growing up, and I can’t fix that.
From May 2005:
During first grade, Meredith became just one of the gang
As the year at Gullett Elementary churns to a close Wednesday, I’m speechless at how far my daughter Meredith has come, academically and socially, in the first grade.
First grade is a happy milestone, yet it’s also bittersweet with the realization that your child is now hurtling toward independence beyond diaper training and story choices. A typical first-grader can write his name fairly quickly, read a book, take turns and stand in a straight line. And, after all, how many of us spend part of our day standing in line (lunch at Central Market) so we can sign our name (Visa charge)?
See? There’s a reason why they say first grade is the most important one.
Remember the first time you took a quarter and a dime out of your pocket and knew the difference? Thank your first-grade teacher. Remember the first time you understood the big hand and the little hand? You can finally color in the lines. And the monkey bars are no longer scary. They’re all typical first-grade accomplishments.
Not much has changed since I was in first grade, and I can say that literally. I attended first grade at Gullett in 1969-70, so I roamed the same halls as my daughter and ate lunch in the same cafeteria. As I peek in my old classroom, I notice the chalkboard is in the same place and so is the teacher’s desk. The view of the old oak tree is still clear from the window. It’s been 35 years since I sat there with my No. 2 pencil and Big Chief tablet.
So much looks the same, but there is one huge difference. I don’t remember any children in my first-grade classroom with physical disabilities or slower cognitive skills like my daughter Meredith. Back then, children with developmental delays usually lived in an institution or attended a “special school” in an environment apart from kids at more normal ability levels.
Thankfully laws and new thinking have changed that for children at Meredith’s level. Each morning, Meredith spends about an hour in a typical first-grade classroom before returning to her Life Skills classroom for a tailored academic program, called an Individual Education Plan. She has learned buckets of new things in her special ed classroom, but, knowing her teachers and therapists, I never had any doubts that she’d grow in knowledge.
It was the socialization in her first-grade classroom that worried me more about this academic year. After all, Meredith has been grouped with other children with special needs her entire life. She has never been the only one that is different.
I wrestled with the potential heartbreak that her differences might bring her — and me — by surrounding her with typical children.
Thankfully, that imagined pain never surfaced. If I’ve learned anything, it’s that one should never doubt the can-do spirit of a room full of 6-year-olds. They’ve made Meredith a friend, not just a visitor.
They’ve held her hand literally and figuratively through the paces of first-grade life.
Every morning she walks in to a chorus of “Good morning, Meredith” as one or more of the kids jump up, grab her hand and lead her to her chair. They’ve shared their books and projects with Meredith. They’ve made up silly games together and patiently identified letters and colors for Meredith when she’s not sure. They’ve learned to never count out Meredith, because one day she’ll do something totally unexpected.
“Meredith knows all our names!” I was told enthusiastically a few months ago by more than one of her classmates. They always give me updates on Meredith when I visit. Six-year-olds are like that.
This comes as not just a huge relief for me, but a tender realization that the hearts of 21 first-graders can be so full, so forgiving, so free of judgments.
So thank you, Emma, Lily, Iris, Lala, Sierra and all the girls and boys of portable E-1. You were so much more than Meredith’s escort. You insisted she try the monkey bars. You learned her way of getting up the stairs. You made room for her in your circle time. You made her feel just like one of the gang.
And thank you, teachers Judy Dismukes, Sally Allin, Laura Pedersen, Nickie Nall, Shenell Brooks and principal Sandy Leibick, who all refused to see Meredith as anything but another eager learner regardless of which classroom she was in.
I know that someday, the picture might not be as rosy. There will be bumps on the academic road, let alone the social leaps Meredith will have to make in future years. But I’m not going to dwell on that right now. I’ll just remember what Dismukes said earlier this year during a wonderfully chaotic first-grade party: “You’re only 6 once.”
From Aug. 2004:
Bringing children to full bloom requires many gardeners
I’ve been anticipating my daughter Meredith’s first day of school all summer. It’s been one part enthusiasm and three parts anxiety. So as we waited on the front porch for the school bus this week, I was trying to maintain my proper role as the mother, which is to have Meredith leave the house knowing she is very much loved, but also knowing she is going to school to learn new things and meet new people and can do all that without me.
As the bus moved down our street and stopped in front of the house, I helped Meredith, who is 7, step off the curb and board. This is a bigger production for her than the average kid because she has special needs and requires help with balance and fine motor skills. Still, she took the stairs like a champ and beamed at the other children.
At this point, many parents would wave goodbye and maybe wipe away a tear. Not me.
“I’m gonna follow you, ” I told the bus driver without a trace of neuroticism or doubt in my voice. “You know, ” I added, “just for the first few days.”
Looking a little perplexed, he nodded and pulled away. I know, I know: I’m a nut. I just wanted to make sure Meredith got to school and to her classroom. I just had to make sure.
I dashed for my minivan and headed after the bus, which had already disappeared from my line of sight. Blanketed in unrelenting exhaustion and spilled coffee, I caught up quickly and stalked the amber giant like some crazed animal protecting her young. While other cars were trying to pass the bus before it stopped, I was plodding behind it. It was strangely funny to me that we passed two other elementary schools — even stopping at one — before arriving at Gullett Elementary in North Austin. Many special education students like Meredith have to travel outside their immediate neighborhood to get the services they need.
When we got there, my fears dissolved. Meredith was greeted by her teacher, whom we had met in the spring, and some older students who had volunteered, as well as the all-important teacher aides. Rather suddenly, my daughter had her own entourage escorting her into the school, making me feel completely silly for worrying about her, now the apparent rock star.
Meredith’s designated meeting spot was in the cafeteria where her class was waiting. I sheepishly followed. Looking around at the mind-numbing array of special-needs students, I marveled at how together the entire staff was, especially Laura Pedersen, the lead teacher for Meredith’s classroom. I sat down and asked her how she has managed to stay in this job for 20 years, the majority of that time at Gullett teaching basic skills to students ages 5 to 9.
“It’s the kids, ” she said without hesitation, “and the families.”
That much was obvious in watching how Pedersen and her two aides greeted the students. Some children gave no response to a “Good morning.” Some smiled. All were greeted with enthusiasm, and my daughter was no exception.
I wondered how long it would take for Meredith to relax and start peppering her teachers with questions (her latest new skill). This started nearly immediately. As they began to line up to leave the cafeteria, I was never more proud of Meredith than when she asked if she could help push one of the students using a wheelchair to get to the classroom.
This school is going to work, I thought. Meredith tends to find happiness almost anywhere she goes, but it takes a special place to foster that.
Gullett Principal Sandy Leibick surely knows that. After being informed that Meredith’s mom writes this column, he sent me a complimentary e-mail and did a far better job than I of explaining how this school works:
“Every year, like magic, the Gullett staff transforms our building into a bountiful garden of hope. A garden which supports flowers of all different sizes and colors. A garden in which each plant is nurtured in its own special way, so that every bloom is treasured for its own beauty without a need to compare fragrance, color and size to others. The Gullett gardeners take time to look beyond the fleeting glance.”
And so the seeds of the first day are planted. I can’t wait to watch them grow.
From July 2004:
A grateful mom thanks school for lesson in letting go
We’re halfway into summer and I’m still filled with emotion over my daughter Meredith’s end-of-year school picnic at Reed Park in Central Austin. It was the fourth time my daughter has attended the celebration with her Early Childhood class, a special education classroom for ages 3 to 6 at Casis Elementary School.
But this time it was different. Her teachers and I marveled at how Meredith abruptly left the picnic table and went to climb on the playscape. Four years ago at the same park and the same playground, she sat on a blanket and watched.
Meredith, who has developmental delays, didn’t walk alone until she was 5 and she has poor depth perception, so you can see why her accomplishments could make me teary-eyed. But it’s more than that. This year’s picnic marked the end of four years for Meredith at Casis. Although some children catch up developmentally and enter regular kindergarten, Meredith will stay in special education and move to a school that has a program called Life Skills, which is more appropriate to her age and skills levels.
It’s a gypsy life sometimes for children in special education. They often can’t attend their neighborhood schools because lack of funding and space issues won’t allow all schools to have all programs. There will be plenty to share about our new school in the fall, but, for now, I want to reflect on Casis, a school that became so much more than bricks and mortar and colorful drawings lining the halls.
I won’t forget my trepidation over that first day in 2000 as I carried 3-year-old Meredith into the classroom. It looked much like any preschool room except there were wheelchairs, sign language cards and modified computers. I remember folding up Meredith’s walker on that first morning and putting it in the corner. “No, ” said her teacher, Maryteresa Tracy. “Leave it in the middle of the room. I want the other children to know she uses it to get around the classroom.”
That’s when I realized compassion and integrity would drive this classroom, not pity.
Since then, Meredith has flourished. She started out crawling across the classroom floor in bulky braces. Now she walks by herself and she can make it all the way to the cafeteria and back to her classroom. In the beginning, she had no words. We tried talking computers, sign language and picture cards, none very successfully. Then a breakthrough came and now she can say the names of all her teachers, much to their delight.
Some might call the past four years a miracle for a little girl who was born with the middle part of her brain — corpus callosum — missing. But I know better. It’s the unequivocal dedication of a team of special education teachers and therapists who wait three years to hear their name uttered for the first time. It’s tiny waves of progress in an ocean of hopes, frustrations and false starts.
It’s having the patience to ask Meredith a question in group time every day and rarely getting a timely answer, but knowing that the answer is up there somewhere in that confused little brain trying to come out. And maybe it will happen this summer, or in the fall or in 2006. But they will celebrate the answer all the same when it does arrive.
It’s about bringing Meredith into a regular kindergarten physical education class and taking her through the games at her own speed and in her own way. The process taught typical children a little about respect and limitations.
It’s about spending hours adapting a chair and footstool with Velcro and duct tape so that Meredith can eat her school lunches in the cafeteria without losing her balance.
It’s about changing a diaper on a 7-year-old and preserving her dignity.
And, finally, it’s about a faculty and principal who always listened to me, took nothing for granted and frequently pushed Meredith one step further than she or I thought she could go.
On the last day of school, teacher Elizabeth Wallace, who spent more one-on-one time with Meredith than anyone else at Casis, told me through teary eyes what a hard time she was having letting go. “I guess I have to let her grow up.”
I guess we all do.
So, thank you, Casis. Especially teachers Jennifer Vail, Elizabeth Wallace, Monet Tacquard, Jonathan Tucker, Sean Weiner, Matthew Rodieck, Chris Purkiss, Sonja Germanio, Samantha Ramchandran, John Hawkins, Celeste Hackney, Carly Wiggins, Brennan Collins and Richard Ribb; therapists Judy McGookey, Cari Anderson, Sally Blacksmith, Sue Fowler, Marjie Wood, Mary Frances Markly, Nancy Schumann; principal Barry Aidman and assistant principal Elyse Smith; P.E. teacher Cindy Samok; Farrell Robertson’s kindergarten class; librarian Julia Campbell; and computer teacher Cindy Sanders. And the fifth-grade reading buddies.
You put my mind at ease, you soothed my anxious heart and you made me proud to be called “Meredith’s Mom.”
Thanks for letting her go, so gracefully.
From May 2004:
Cultivating a garden – and the bonds of friendship
A friend asked me the other day if I was ever going to write this column again. It is indeed gratifying that someone other than my mother or editor has missed my words. And so I’m back in the groove after several months away.
For the uninitiated, I write a column in this newspaper about the joys and challenges of raising my daughter Meredith, who is developmentally delayed because her brain did not fully develop.
Earlier this month was her seventh birthday. Things have been more chaotic at our house than usual because we just moved. Though Meredith seems to be happy in the new house, she’s constantly asking which house we are driving to when we’re in the car.
Indeed this is a relevant question. We haven’t sold the old house yet and we’ve spent most of our free time shuttling boxes back and forth. I’d been wanting to give Meredith a feeling of being settled, an understanding that the new house is the new home. She loves flowers and the outdoors, so I decided to designate an area of our yard as her very own garden for her birthday present.
Over the past few weeks I’ve been collecting garden decorations, including a birdhouse, a child’s bench and a garden stake with little glass fireflies that light up at night. I made a path with paving stones left over from our next-door neighbors’ house. We’ve planted impatiens, a gardenia and rosemary.
But this lovely little garden is just a small part of Meredith’s birthday story. The bigger gift came in the form of a 6-year-old girl named McKenzie Green, who came over to our house to help plant the garden. Meredith met McKenzie at Casis Elementary School in an Early Childhood program that combines children who have special needs and children, like McKenzie, who don’t.
This is how Meredith met McKenzie. Though they are now at different schools, they have kept in touch. From the very start McKenzie took a special interest in Meredith. No one ever had to tell her to reach out and hold Meredith’s hand. She was often right there leading Meredith from one activity to the next and helping her on the playground. She talks to Meredith as she would any other peer. More importantly, she waits for an answer, which can take an unusual amount of prompting and patience at times.
While some children find Meredith’s awkward walk and slowness in processing her speech offputting, McKenzie has always had a special way with Meredith. She seems to know just when to help Meredith and when to let her find her own way. Some children can be taught how to play with Meredith, but McKenzie has a gift.
This never became more obvious than when she began to help Meredith with her garden. It was clear right away that McKenzie wasn’t just here for a ceremonial planting. She had brought three impatiens and one gardenia and she was going to plant all of them along with the plants I had selected.
Her sweet face grew pink and her knees began to get dirty, but she continued to dig, pigtails flopping down around her chin. She’d look up occasionally and ask Meredith where she wanted the next plant. They always agreed on the spot.
Twelve plantings later, they were done.
Sitting around the edge of the garden, Marie Green, McKenzie’s mother, and Adrienne Watt, Meredith’s grandmother, and I marveled at how two such different little girls could have bonded so beautifully. But maybe it takes the eyes and heart of McKenzie to teach me that Meredith really isn’t so different. She wants the same joys as any little girl. She just needs extra help in being led to them.
When McKenzie was finished, the girls took turns watering the newly established garden. They sat on the bench together and McKenzie instinctively reached over to hold Meredith’s hand. Meredith beamed.
As I walked McKenzie and her mother back to the car, McKenzie looked back one more time at the front porch where Meredith was standing. She stopped and went back up the steps to the front door to give Meredith another hug. There was total silence between the two of them.
Meredith didn’t need to come up with any words to convey how she felt at that moment. McKenzie just knew.
From Sept. 2003:
A new school year brings pride, hope for Meredith
School has barely started and already I’m seeing progress from my daughter, Meredith, who is 6. If she were typical, she’d be off to first grade this year, a big milestone.
Instead she’s in her fourth year of the Early Childhood program at Casis Elementary School. It’s part of the school district’s special education curriculum that offers an appropriate learning environment for students with special needs.
I thought that when the time came, I’d peer into the rooms of all the first-graders and be sad that Meredith wasn’t there. Instead I’m standing at the doorway beaming as Meredith motors around the classroom meeting some new friends and getting reacquainted with her old room.
Meredith started Early Childhood at age 3, so she is now a veteran in this program. Her confidence astounds me.
The first day this year, she walked in like she owned the joint. She immediately found her name in the circle on the floor and then made a beeline to the play kitchen. There, she found two new classmates busily taking pots and pans out of the cabinet. She leaned in and said nothing, but you could tell she was on the verge of giving some unsolicited advice about kitchen etiquette.
When her teacher announced it was time to clean up, not everyone jumped to the task. Meredith looked at me with an expression of “Boy, do they have a lot to learn.”
This may sound like typical kindergarten stuff, but it’s nothing short of a miracle if you know my daughter, who’s been developmentally delayed since birth. In just two short years she has progressed from riding in a wagon to using her own legs. She can say her name and ask for a specific color instead of relying on a talking computer. She’s asking questions and climbing on playscapes.
It doesn’t really weigh on my mind that Meredith is two years behind her peers. If you look at it my way, she’s two years ahead of where I thought she’d be. That’s not a pessimistic outlook, mind you, but maybe it’s a guarded one.
When we got Meredith’s diagnosis, things looked grim. She was a tiny baby and about all we knew was that part of her brain did not form. We were told she’d probably make progress, but no one knew how much or how fast. I learned early that setting the bar too high brought me heartache and forced so much therapy into our home that Meredith had no idea what a normal childhood looked like.
My husband Jim and I have learned to balance hope and grace with reality and sadness. I could spend the next 5,000 words detailing experiences that have evoked those feelings, but I think I can give you the short version:
Hope: The neurologist told us two years ago she might never talk. Today, she never stops chattering.
Grace: Explaining why Meredith is different when a child asks what’s “wrong” with her.
Reality: It’s unlikely she will ever reach the same cognitive level as her peers.
Sadness: When I’m 80, Meredith will be 46. Will her little sister be able to care for her and love her as much as I did after I die? Is it even fair to ask her?
Fortunately, I have learned not to dwell on that last one.
I wish I had known when Meredith was a baby that her ability to paint and make friends is far more important — and meaningful — than walking or talking perfectly.
The other day I was walking down the school hall with Meredith to go home. There was a row of painted bears out in the hall waiting to dry. I asked Meredith which one was hers, but I was unsure she’d be able to pick it out.
After a brief pause, she cocked her head a bit, pointed and loudly declared, “That one!”
Never before did two little words say so much to me: hope, grace, reality. I’ll save sadness for another day.
From June 2003:
A typical trip to the zoo, at last
As the giraffe placed her mouth firmly around the tree’s top branches and pulled off some more leaves, the children clinging to the fence watched in excitement.
I could only imagine how mundane this all must have seemed to the giraffe at Waco’s Cameron Park Zoo.
“Mama, look at the giraffe!”
And, “He’s got spots!”
Surely they can do better than that, she must have thought as she paused to look at the tykes and then went back to her munching.
For Caroline, my 2-year-old, it was her first time to the zoo and a thrill to see the animals that heretofore she had only known in books. Every one of them will remember Caroline as she screamed “goodbye” at every exhibit as if she had been invited to a play date.
But what made this family outing so special were the reactions from my 6-year-old daughter Meredith, who has developmental delays. She’s been walking unassisted for only about nine months and her vocabulary a year ago consisted of about four words. Now she knows more than 100. And the animals heard every one of those words — trust me.
My little chatter box, who I once thought might never utter a word or walk on her own, set out to make the zoo her own. As soon as we got out of the car, I grabbed her hand to head to the entrance.
“No, ” she protested. “Me . . . ME!” This translates as “Hey, I want to walk on my own. Let go . . . NOW.”
“Are you excited about seeing the animals?” I asked her.
“Yey-ahhh, ” she answered, a uniquely Meredith twist on the usual “yeh, ” an exaggeration she saves for the most exciting occasions.
And this was one of them. She eagerly kept pace with us and even zoomed ahead along the pathway to the first exhibit. It was bizarre for my husband Jim and me to see Meredith getting away and having to say, “Meredith . . . stop!” In fact, we never dreamed we’d have to say “Meredith . . . stop!” The words sounded so foreign.
Despite her enthusiasm, I was still guarded about the zoo experience. We had taken Meredith to the zoo a couple of years ago and because of her limited vision she couldn’t pick out the animals unless they were very large or colorful and moving. It was frustrating and disappointing to all of us.
But she’s come so far since then in her development, including improved vision. Surely this trip would be different, I told myself.
Our first exhibit was the gibbons. There was a slight hill to get down to their home and Meredith decided she wanted to hold my hand. As we arrived they were swinging from a rope with their impossibly long arms dangling them about six feet from the ground.
We put Meredith as close as we could to make it easier for her to see. I was really hoping she’d be able to pick them out of the man-made jungle surrounding them.
“Meredith, do you see the monkeys?”
She was quiet.
“Look, see that one, ” I said. “He’s swinging on the rope. See the rope up there?”
I waited for what seemed to be an eternity. I was thinking to myself come on. . . come on. . . tell me you see them.
She was utterly silent, but then her gaze got more intent. She cocked her head, allowing her eyes to focus a little better and a smile came across her face. She said nothing.
I bent down and whispered in her ear, “Do you see the monkeys?”
“Yey-ahhh, ” she responded. The smile never left her face.
“She sees them, ” I called to Jim, who was wrestling with Caroline to hold her up higher. We didn’t pause to have a conversation about it, but we both knew it was a big moment.
And I suddenly felt like we were the poster family for the exhibit titled, “A Typical Family at the Zoo.”
Of course, anyone who got close to us could see Meredith walks a little jerky and unsteady and she talks in partial sentences. But to me her special needs this day were no different than those of any other child. Like other kids, she enjoyed some animals more than others and she grew tired toward the end of our visit. Typical, not special.
Jim and I marveled at how smooth this outing was going. No strollers. Limited whining. Two children who can walk and talk. “Can you believe how easy this is?” I asked.
“I know, I know, ” Jim answered, relieved that the day had not turned into an ordeal as it had in the past when we had to take turns carrying Meredith.
We ended our tour with lunch at the zoo, a feast that gave Meredith yet another chance to use new words: “ketchup” and “hotdog.”
Sometimes there are perfect endings. And ours was long overdue.
From May 2003:
Spring’s blossoms renew special bond with my Meredith
The jasmine is getting ready to bloom in my front yard and the Carolina wrens have come back to nest in a nook above our front door. I love the feel of spring, a time of nature’s gentle reawakening before the fire-breathing beast of summer makes its appearance.
It’s a season when fresh spring dresses make my two daughters look catalog-perfect before the rips, stains and growing tummies force me to pull out the give-away box again.
But in recent years, spring has also been a reminder for me that as the seasons surely come and go like clockwork, life is not nearly so certain.
When my daughter Meredith was a newborn, I took her out into our yard to see the blooming jasmine. I told her that each year it would magically come back for her birthday on May 2. She slept through this first mother-daughter-nature bonding moment, but I didn’t mind.
The next year I carried her out to the twist of green vines and white flowers and picked one of the blooms, holding it to her nose. She smiled a bit and she seemed to know it was something special. By then . . . I knew she was, too.
Between those first springs of my daughter’s life, she was diagnosed with physical and cognitive delays as a result of an underdeveloped brain. We got the diagnosis on the phone on an unusually cold winter evening in early December.
Each December I still shed mental tears over that moment when I aged 50 years in five minutes. I didn’t know what to expect then, but Meredith would not walk for several more years or utter a word till she was 4.
I could dwell on her delayed development, but with the arrival of spring, I merely have to take Meredith outside to see her metamorphosis.
“Watch this, Mama!” has become her newest phrase and she repeats it over and over again as she walks all over our yard. It seems this year she has found new endurance and strength in her legs. It still gives me goosebumps to see my little girl moving and talking at the same time.
I love how she and her 2-year-old sister Caroline can find an afternoon’s worth of entertainment in the piles of fallen oak leaves and the “surprise” flowers that pop up after a spring rain.
Perhaps spring is a metaphorical break for me. It’s lovely proof that the harshness of a winter memory does melt with the arrival of April.
If Meredith were a baby bird, she’d be leaving the nest about now. Thankfully we humans get to stick around for more instruction. Things aren’t as simple as being able to survive the elements and reproduce. We have the opportunity to stop and smell the flowers and have a conversation about them. Sometimes I think that Meredith’s understanding of these subtleties is far more important than a perfect gait or complete sentences.
On Friday, for the sixth year, the two of us went into the yard to remember another birthday. So happy birthday, Meredith. The jasmine is blooming again and so are you.
From March 2003:
With each step, life gets sweeter
It’s like this. Your child has been requesting a single scoop of vanilla ice cream after dinner every night for two years. Despite your pleading and explanations of how fun it could be if she just tried chocolate or strawberry, she remains stubbornly wed to the vanilla.
Then one day after dinner, she goes to the freezer, scoops out three flavors, pours on the chocolate sauce and sprinkles, and grabs the cherries and bananas and a tub of whipped cream.
She sits down and happily eats what she’s created as if she has done it her entire life.
That would be nothing short of stunning. And the first thing out of your mouth would be to holler to your spouse, “Come quick! She’s eating a banana split.”
Then you’d call your friends, your extended family and the neighbors to express your excitement over this change. And you’d pray that it wasn’t a fluke. You’d hope, in fact, that she will be willing to try new flavors every day.
But then, the next day, she goes right back to vanilla, leaving you confused and frustrated.
Well, that’s how my husband, Jim, and I have felt ever since our 5-year-old daughter Meredith, who has developmental delays, took her first steps alone at home. Then, the next day, she abruptly stopped. She would walk a bit for her therapists and teachers, but never at home, leaving the memory of her initial steps a bittersweet experience.
On Feb. 15, Meredith walked again and she hasn’t stopped since. That night she chose to walk, we had some friends over and the gathering instantly turned into a victory party for Meredith as we watched her walk from the kitchen to the den and through the dining room.
Her gait was stiff and a bit awkward, but, to me, she looked serene, like a swan. Of course, it wasn’t really her steps I was looking at. It was the fact that, for the first time, she could spot me across the room and actually walk over to give me a hug. This is huge. When she was 2 years old, she wouldn’t even notice I was in the room unless I spoke. Back then she had no words, poor vision and her crawling was barely happening. All these past obstacles were floating through my head as Meredith walked up to me for the second time on that February night, tugged my sleeve and said, “Hi Mama!”
I’d waited so long for her to put walking and talking together. You couldn’t imagine my goose bumps.
Everyone was taking note of this moment, except Meredith’s 2-year-old sister, Caroline, who seemed to wonder what the fuss was about. She was unimpressed with Meredith’s walking, but seeing as how her big sister was getting all the attention, she decided she would join in. So as Meredith did her walking, her little sister lined up behind her and mimicked each and every awkward step as if to show us she could walk just like Meredith. Meredith really couldn’t have timed this milestone any better. The school district did an assessment recently, and it’s been decided that she can spend part of her day next year in a typical kindergarten or pre-kindergarten classroom.
I’m terribly excited, but my hopes are also laced with reserve. I so want Meredith to fit in with the other kids.
I’m not naive. I know that her awkward stepping will be noticed right away. But surely her peers will see her for her intrinsic curiosity, infectious smile and loving nature. She is not one-dimensional, not a vanilla girl. She’s a banana split in the making.
From Dec. 2001:
A special kind of daddy is the greatest gift of all
The twinkle lights and baubles spill out of the corners of just about every store, but my instincts this year are to shield my eyes from the glitter and search for the truer meaning of the season. But first, I have to buy my husband a CD burner.
December has always provided a mixed bag of emotions for me, but in recent years two anniversaries have been added to the mix and, boy, is that bag getting crowded.
In the worst sense, it was four years ago this month that Jim and I had to take our daughter Meredith in for testing and subsequently learned that two parts of her brain did not fully form. As a result, she was diagnosed as developmentally delayed and has spent the past four years going to therapy so that someday she may walk on her own and be able to ask about Santa Claus. A second December anniversary, and a much happier one, is my marriage to Jim. Friday will make it 10 years.
The two of us don’t mark the former anniversary because hardly a day goes by when we don’t think about the speed bumps that our beautiful little girl has in front of her. But if I’m truly going to search this December for gifts that cannot be found in a store, I need not look further than the guy — my husband — playing guitar in the spare bedroom next to me.
He’s playing just loud enough to rock, but not so that he wakes up our baby daughter Caroline in the room across the hall. He’ll be emerging soon to put his favorite 4-year-old to bed. Meredith has had a special bedtime ritual with her daddy since she could coo.
Where I have found my role of mother expanded to that of social worker, therapist and advocate for Meredith, Jim has always made it a priority to just be Daddy.
Don’t get me wrong, he’s been there for all of the soul searching and life-is-not-fair moments of raising Meredith. He held me when we waited for Meredith’s eye surgery to be over and he laughed with me one night when we decided that watching “must-see TV” during sweeps was just going to have to take priority over Meredith’s evening therapy regimen.
“Guess she’s not going to walk today, ” I said during a particularly crucial episode of ‘ER’ a few years ago. “Guess not, ” Jim answered before we both started laughing.
Perhaps that’s strange humor to some, but it got us through. And three years later, with Meredith still not walking on her own, humor is still getting us through, because it has to.
Like me, Jim finds that raising Meredith is parenthood magnified. It takes a special daddy to accept that the dreams that he had for his child must be altered — daily. It takes a different kind of communication to understand that Meredith cannot catch a ball or throw it very well or even say the word, but it remains one of her favorite toys. It takes patience in the extreme to sit with Meredith for 20 minutes so she can learn to use her fork one macaroni swirl at a time.
In all this, we’ve discovered that our marriage rests in a much deeper place than the vows we promised to each other 10 years ago. The richer and poorer and sickness and health, it turns out, would be the easy part. There was nothing in the vows to prepare us for the heartbreak of realizing that Meredith may always have challenges. And, conversely, nothing has touched our hearts more than understanding the very different and wonderful child she is. Meredith has changed Jim and me profoundly as individuals and, undoubtedly, the course of our marriage.
The other night Jim came back in our bedroom after tucking in Meredith and he was smiling, but teary-eyed. He explained that she had raised her arms for a hug as he was trying to leave the room.
There’s no telling what the next 10 Decembers will bring to our marriage, but I hope the music coming from the spare bedroom always sounds as sweet.
From Nov. 2001
My two very different daughters have much to show each other
I’m watching my daughter Caroline as she crawls across the room, pulls up to her knees, then places her hands on the couch and comes to a stand. Following her cue, my other daughter, Meredith, crawls toward the couch, puts one leg up, then the other and comes to a stand. She’s a little more awkward, but she gets the job done.
This would be a mundane observation if it weren’t for the fact that Meredith, 4, finds it challenging to perform the same moves as her 10-month-old sister.
I love to watch them together now that Caroline can get around and be such a bother to her big sister. Meredith is highly annoyed. And who wouldn’t be? She has been the center of attention for four years not only at home, but as the focus of more than 20 professionals helping her overcome her developmental delays.
Even though Meredith still frequently crawls to get around, this is not odd to Caroline. She doesn’t care that Meredith doesn’t hold a fork so well or can’t get up and walk across the room. She worships her big sister.
And though it thrills me to see my girls playing together, I could not have known the journey would be so bittersweet. I never realized that seeing a second child develop so typically would bring back such crushing reminders of how hard it was for Meredith.
I feel guilty enjoying Caroline. It’s just stunning to me that she needs no lessons on how to take blocks out of a container or eat crackers. The everyday occurrence for Caroline was a heart-wrenching struggle for Meredith.
I want to cheer for Caroline in her newfound mobility and, yet, it seems unfair to encourage her with Meredith in the same room.
But despite the physical advantage Caroline has, I recently learned how much Meredith has to teach her.
We had just returned home from school and I was taking Meredith’s artwork out of her backpack. In order to discuss things, I will point to the picture and ask her about colors. She can’t answer in sentences, but she can answer “yeah” or shake her head “no.”
I laid all her pictures out on the floor and we talked about each one. I said, “Can you tell me about this picture?” and waited for her to cue me by pointing at something.
Instead she smiled a bit shyly. Then she picked up the picture with both hands, being careful not to wrinkle it, and brought it to her chest to hug it. My little girl cannot tell me about school in words, but she found a way to convey that this picture was the most important thing she had done all day.
Even Caroline, who normally makes a beeline to destroy anything made of paper, stopped to look at her sister’s expression. Meredith again pressed the paper to her chest. Her meaning was clear.
They will always be different, Meredith and Caroline. I wish I had a road map to give me an inkling of where life’s journey will take my daughters. I guess every parent wishes for that.
I just hope that when Caroline motors ahead, she’ll pull over from time to time and wait for Meredith. Only then will she see traveling the road with Meredith may be full of U-turns and alternate routes, but the view has an uncommon beauty.
From Oct. 2001:
Therapists boldly take Meredith where she’s never been before
If it takes a village to raise a typical child, then it takes an entire city to raise a developmentally delayed and sometimes willful 4-year-old. Or, not to put too fine a point on it, it takes eight therapists every week pushing their imagination and patience to new thresholds to come up with better ways for my daughter Meredith to live her life.
I used to think physical therapy was exclusively about patients doing specific exercises to strengthen muscles. That’s true, but I just didn’t know about the fun part. Try and tell my 4-year-old she needs to be working on stretches and she’ll likely hit you over the head with her Blue’s Clues video.
Luckily for Meredith, all her therapists — Cari, Judy, Sue, Mary Frances, Christy, Gil, Kim and Diana — have figured out how to cajole her into various activities that will help tone her muscles, improve her balance and communicate with others — your basics for preschool survival.
I’m always amazed at what Meredith will do for them. Take Tuesday mornings, for example. That’s oatmeal day, the day when Meredith eats her breakfast while Cari, her occupational therapist at school, helps her with the scooping motion. The other morning I attended the oatmeal session, thinking surely I could offer some great tips. I mean, as Meredith’s mother, I do usually remember to feed her.
So we all sit down and I take the spoon out of the backpack and stick it in the oatmeal and we wait. And wait. I begin my helpful tips with, “Meredith, you just did this yesterday.” I pick up the spoon. “Where is the spoon?”
Cari, on the other hand, remains patient, sitting and waiting. We watch Meredith fiddle with things on the desk, point at things on the walls. We watch her lean into the oatmeal, inspecting it, never mind the fact that she has eaten it every day of her life for the past three years.
Meanwhile, it’s taking all the will I can muster for my inner Satan not to scream out, “Meredith, my God. Please eat your oatmeal!”
We wait some more. Finally she dips the spoon in the oatmeal goo, and Cari helps her guide it to her mouth. Once again Cari’s patience wins out. One bite at a time, that’s what it takes. Maybe parents should not attend therapy sessions . . .
The rest of the week — until Friday, which is oatmeal day again — Meredith has physical therapy sessions at Easter Seals where they will coax her to climb up and down stairs with help and get her to walk down the hall holding onto a dog leash led by her trusty pal Sheeba. I think Meredith knows she can just about walk on her own now, but she doesn’t want to give up Sheeba just yet.
It’s her twice-weekly oral motor therapy, however, that convinces me that therapists all over the world need a raise. Meredith has only two real words, so as part of her speech development, she must exercise her mouth muscles. This leaves her therapist Christy with the task of finding foods that will entice my little clam to open her jaw. The other day I watched in stunned amazement as Christy put a lollipop on a spinning contraption, and Meredith freely opened her mouth for it. By contrast, I try and remove a crumb from the corner of Meredith’s mouth, and she protests. Loudly. I’ve asked Christy to come live with us.
I’m convinced that if all of Meredith’s therapists came together in one room, they could build a spaceship out of PVC pipe, Velcro and rubber tubing and send Meredith to the moon. Her chair would be specially outfitted with a sippy cup holder, and they’d install a touch- screen computer on board so that Meredith could communicate with the extraterrestrial preschoolers, because social interactions would be an important part of her day.
After Meredith would rocket back to Austin, they would get a list of things I could be doing at home to make Meredith’s next flight go more smoothly. Then they’d file all the paperwork, getting NASA to pay for it.
This is what therapists do. They are gods.
They somehow convince Meredith day after day that her life is not complete without tackling that bowl of oatmeal, maneuvering the walker over unforgiving concrete or tasting the spinning lollipop.
So maybe she’ll never go on a space mission, but her therapists will always assume it’s a possibility.
My prayer for Meredith stirred my understanding
As a mother of a child with developmental delays, I’m sometimes told that my husband Jim and I were chosen to have our daughter Meredith because God thought we were special, somehow stronger.
This thought has always given me pause. Watching my daughter push her physical and cognitive abilities to the point of exhaustion just to do what her peers were doing two years ago doesn’t make me feel particularly special. I can’t imagine my life without my sweet little girl, but it hasn’t made me closer to God. It doesn’t make me want to pray more, but rather question when I should pray and what I should pray for.
There is no medicine to fix her congenital brain differences and if I thought specific prayers would make her delays disappear, I’d skip her therapy sessions and head for church every day.
Recently I had lunch with a mother who said a special prayer session through her ministry had cured her son of autism. I’m really happy for her, but part of me wonders: If prayer doesn’t create a miracle for Meredith, then do I need to arrange a special prayer session as this mother did or is it that I’m just not praying hard enough?
In this month of national tragedy, I’ve seen pictures of thousands of people of many different faiths praying. They’re saying prayers in churches, on the streets and knee-deep in rubble. Long after initial search and rescue efforts are over, they are still praying.
I realize that, for many of them, they’re not praying for an individual. They are praying for peace and hope and strength. And, most of all, for comfort.
For me, prayer is something I question as much as I embrace.
A few summers ago when Meredith was a baby, I visited a historic church — a tourist attraction — in New Mexico called El Santuario de Chimayo. When I went in people were busy praying and filling out prayer slips to be placed in a box.
It stunned me that while tourists were busy snapping photos and buying chile peppers just outside, the church was a place people had come to for help, some desperately so. It didn’t seem a time to place doubt on prayers, so I reached for a slip of paper and simply wrote “A Prayer for Meredith” and put it in the box. There just wasn’t enough room on the paper to go into the full story with God.
I paused to take in the beauty of this 185-year-old church and then followed the crowd into a smaller room where everyone was scooping up holy dirt. I did the same, holding it tightly so I could give it to Meredith, who was waiting outside the church. It left an impression on me, not because I thought this dirt had miraculous powers, but because I was humbled that so many around me believed it did.
On the way out, I passed by a neatly arranged assortment of discarded braces and walkers and wheelchairs. Presumably they were left behind by people who no longer needed them — people who had prayed and believed in the healing powers of Chimayo.
The following summer, Meredith was fitted for braces designed to better position her feet for walking. She wore them for two years, and Jim and I recently were told she would no longer need them. I suspect this has more to do with the power of physical therapy than a miracle from God.
Still, it only seems right that I should return to Chimayo to put Meredith’s leg braces in the stack with the others. I feel the need to make good on the memory that with a little dirt and a slip of paper I began to understand why people pray.
This month, haven’t we all?
From Aug. 2001:
Yeaaah! At last a word from my Meredith
My daughter, Meredith, said her first word. Phonetically, it goes something like this: “Yeaaah.”
A simple word, I know, but I need to take a few minutes to, well, SCREAM.
I feel like throwing every window of my house open and shouting, “Meredith has a word!”
You see, my husband, Jim, and I have waited four years, two months and 10 days to get to this day. We can now ask her a yes-or-no question and not have to guess the answer based on her facial expression or her uncertain signing abilities.
When a teacher or waiter asks her if she wants more milk, she can answer.
With a word. The other day when this happened, I felt like saying, “Excuse me, sir, but did you know that’s only the 47th time she has said that word in her entire life?”
I’m downright giddy.
Still, I know I need to practice some restraint because when it comes to speech and a child with developmental delays, there are no guarantees.
A year and a half ago, completely out of the blue, Meredith said the word “flower” in a therapy session as if she had said it every day since birth. I remember looking at Christy, her speech therapist, and us both thinking the same thing: Did that really just happen? After that hour was up, we never heard it again. Not once.
Then last spring, the same thing happened with the word “yellow.” Only this time, she said it for a couple of months before it disappeared.
Jim and I recently asked her neurologist why this game of hide-and-seek happens with language; he said he sees it frequently with speech among children with developmental delays. When I asked why, he replied in his most scholarly doctor voice: “We don’t know.”
We really should know, I said. I mean, we have mapped the human genome, sent rockets hurling into space, cloned a sheep and invented Goo Gone. So, would it be so hard to discover why a little girl can wake up one day and say “flower” and then never be able to say it again?
Even Meredith seems to be repeating her word “yeaaah” just to make sure it remains cemented in one of those elusive synapses in her brain. The other night she was babbling to her dolls and stuffed animals on her bed as she usually does, but interspersed with her babbles was her new word. As she went down the row of animals she would say the word to each one. So all I could hear outside her door was “yeaaah . . . yeaaah . . . yeaaah.”
I want Meredith to hold on to this first word so badly that, like some crazed Mister Rogers, I’ll ask her dozens of questions a day just to hear her tiny, but equally excited, voice respond with “yeaaah.”
Jim is a willing accomplice. One morning he was playing guitar for Meredith, and he was doing the “If You’re Happy and You Know It” song. You know the one where if you’re happy and you know it, clap your hands. Then, if you’re happy and you know it, stomp your feet. Only in Jim’s version, he sang, “If you’re happy and you know it, say yeaaah.”
To an outside observer, it would seem Jim and I are losing it, but Meredith thinks it’s great. She thinks her daddy is a genius. Friends tell me that when Meredith turns into a little motormouth, I’ll look back fondly on her days of few words. I think not. If I have to hear her sing the theme to “Barney” every day for a year, it will be nothing short of miraculous each time. Right Meredith?
“Yeaaah! Yeaaah! Yeaaah!”
From July 2001:
The smallest of gestures can declare independence
The first time I took my daughter Meredith to Rosedale School, it quite literally took my breath away. The more I looked around, the more difficulty I had breathing. I was just barely willing to accept the news that my baby daughter would be developmentally delayed, so I certainly wasn’t ready for this special school.
As I walked in, an empty pink wheelchair belonging to a little girl not much older than mine sat in the hallway. Large therapy balls and special chairs with extra straps seemed to fill the corners of every room. At the school’s entrance, a bulletin board displayed more than a dozen memorials to students who had died.
By the time I got to Meredith’s classroom, I was breathless with anxiety. No matter how compassionate the teachers, I simply couldn’t get grounded in the possibility that this would be my daughter’s world.
That was 3 1/2 years ago. We have since graduated from Rosedale, but Meredith comes back for summer school. I still notice the therapy equipment, but only because it is helping Meredith learn how to walk and talk. The wheelchairs don’t stand out to me anymore because I’m focusing on the children in them who are friends with Meredith.
Here, I’ve learned, progress is measured one centimeter at a time.
This was never more apparent to me than at the school’s recent Fourth of July parade. Normally an unassuming little building on West 49th Street, Rosedale was transformed into Yankee Doodle headquarters, including a parade leader dressed in full patriot attire. Following him around the school’s circle drive were staff and students waving flags and glittery signs. Even April, the therapy dog, was doing her best to look stoic in a basket on wheels, hat cocked to one side. Most of the students joined the parade using their wheelchairs, while others were pulled along in red wagons, including my daughter. Though few could march, this didn’t change the spirit. At Rosedale, if there is a day for celebration, it is seized.
As the music started, my eyes followed Meredith around the circle to see how well she was interacting with everyone. I thought about her first year in the parade and how she couldn’t sit up very well in the wagon and couldn’t spot me in the crowd. She looked so different now. This year, I was hoping she would wave.
When her wagon got closer, I shouted in my best soccer mom voice, “Wave, Meredith!”
She looked at me, smiled, but ultimately was too overwhelmed. She came around again and her teacher Robin said, “Look at your mama, Meredith. Wave.” She beamed, but no wave. By now everyone was starting to sweat, and even April looked hot. They marched on.
The next time, as her wagon neared, I moved to the very edge of the curb, toes hanging off. I didn’t say anything because Meredith looked as if she was too busy trying to process the chaos of the music, sparkling colors and crowd. But, in my heart, I really wanted her to get the waving part. She was almost past me. Then, at the last possible minute, her eyes found me. I waved. And her little arm very slowly started to rise and she managed a small fluttery wave back at me.
My heart flipped as I put my sunglasses back on, not really wanting people to know I was getting teary-eyed over something so silly. Nearby, friendly drivers were honking at the colorful parade and I wanted to yell to them that the little girl in the front wagon was my daughter and she just waved.
After the fifth or sixth go-round, the parade began to wrap up. We all filed back into the school, past the sign that reads “Independence Taught Here.”
Inside, I had that old feeling of breathlessness again. But this time it wasn’t from any anxiety attack. It was from my all-too-happy heart that could see Meredith is figuring out her world one Independence Day at a time.
From June 2001:
A suit, a dress, a belt — reminders of the self I left behind
I keep walking around a pile of clothes in the middle of my hallway. They are in the potential Goodwill stack. I walk by this little hill several times a day but can’t seem to take that final step of loading them into the car.
Topping the pile is a Banana Republic suit, along with some chunky black shoes from my fashion-conscious career girl era of the mid-’90s. Under it is the slacker ensemble I used to wear to Liberty Lunch shows when I was trying to look like I was in my 20s. Then, there are various belts that have lost their way. I’ve come to see it’s not so much the clothes I’m letting go, but the old Sarah, skirt by skirt.
I think about the time in my life when I wore these clothes. I was sure I had the coolest job in the world as entertainment editor for this newspaper. I liked nothing better than being among the first to hear from the critics about the newest play in town or a local band that just got signed. Then there were the intellectual challenges like debating with a writer whether the word “suck” should be used in a family newspaper. I lived for this stuff, and I couldn’t wait to get to the paper every day to work that job wearing those clothes.
I still remember the last time I wore the Banana Republic suit. It was a day when I wouldn’t be discussing the latest band or Austin’s growing opera audience. I’d be quitting a job I loved for a child I loved more. My husband and I had learned the day before that our daughter would be developmentally delayed. We decided that helping her learn to walk and talk would take precedence over my career for a while. Fortunately we could afford to do this, but like other women who have left a career, I did it with an uncertainty and sadness I still feel to this day.
My life over the past three years has been about play groups and doctors’ appointments and therapy to help my daughter Meredith reach her milestones. Right or wrong, I have approached the job like a career. I told myself initially I’d take two years off because she surely would be walking and talking by then. Not so. In fact, at age 2, speech therapy became part of Meredith’s daily regimen. We blew cotton balls, did facial massage and showed her flash cards — a dozen of them — twice a day. We used a hat with a chin strap to keep her jaw from jutting. We put eye patches on her eyes to keep them from crossing. We put braces on her legs to ready them for walking.
Today Meredith is 4. If I had a job review, I’d likely be put on probation. I haven’t met those elusive goals I set for Meredith to walk and talk. My search to fix her vision has failed. And my agenda for the future lacks focus.
I no longer look in the mirror and see the career girl in the perfect size 4 beige suit. I see a mother who wears faded Levis nearly every day and tries to part her hair so that the least amount of gray shows. I see a journalist who never found answers to why her daughter’s brain developed differently.
But I also can see a woman who has found a more gentle side of herself. I still go to meetings, except now they are at my daughter’s school and I tend to listen more with my heart. I’m not the first to hear about new art exhibits coming to town anymore, but I savor every awkwardly drawn picture Meredith brings home because it’s proof she can hold a crayon. Furthermore, my instincts tell me she’s going to walk and she’s going to say “mommy” even if I have no papers telling me that.
I guess I’m going to let those clothes — those former pieces of Sarah — go. Fashion is fickle, after all. It will change just as I’ll have to for Meredith. There will come a day when she won’t need me so much. I hope when that happens she won’t put me out in the hall for Goodwill.
From May 2001:
A big question we’re not ready to answer,
On the night my husband and I were told our daughter would be developmentally delayed, there was one question above all others that was breaking our hearts: Who would take care of Meredith after we were gone?
We spent much of 1998 pondering just that as we saw the gap widen between what Meredith was doing developmentally and what her peers were doing. Now she’s 4 and the gap continues to grow, but, on most days, we see hope that she will walk independently someday and find a way to communicate.
I’ve written about my hopes for my daughter over the past few months in this column, but I haven’t addressed her longterm future because there is a whole childhood she and I have yet to enjoy. But I recently found myself pondering the future after a reader asked me to visit Marbridge, a home to 216 adults with special needs.
During my tour there, it seemed unthinkable that I would write about the experience. Would I want Meredith to read this someday and think that I had assumed she would need assisted living? Had I already made the leap that she would not get married, have a career or be a mother? It gave me pause about going at all.
Nevertheless, there I was at Marbridge, a pastoral setting of some 300 acres that has many alternatives for people with disabilities, ranging from a dorm-like setting to small cottages. Pen in hand, I sat in the office of Bob Fullbright, president of the Marbridge Foundation, ready to do an interview, find a feature story.
The tour was extensive as we visited an art class, music sing-along and then a math lesson. We met so many people who have found a family at Marbridge and a job, whether it be on or off campus. More importantly I met people, who may carry a label of mental retardation, but who were doing math, working jobs and had plenty of confidence.
I understand now that when I see individuals with cognitive challenges out in the working world, they want to go home at the end of the day just like the rest of us. Some would rather have that home be a place like Marbridge where they have friends with like interests and enough independence to do their own laundry and make shopping lists.
But I knew from experience there was more to it.
For every Marbridge resident, there is a parent or relative who one day came to the realization in her heart and mind that algebra was out of reach for her child. That driver’s education, a teen-age rite of passage, would never be realized. That Special Olympics would take the place of a high school track meet. Those parents have been down a long road I had only just started.
I wanted to ask questions so a small part of me could know I was doing this right for Meredith. Did their daughter need speech therapy and did it work? How did they cope when the schools told them their child would be in special ed? Didn’t they just want to kill someone when the insurance company refused a claim?
At the end of the tour, Fullbright asked me what he could do to inform young parents like me about Marbridge. I gave him some advice and then I told him the truth. Perhaps I keep Marbridge as an option in a small subconscious corner of my mind, I told him, but really I expect the world for Meredith. I simply can’t get to a place emotionally right now where I can see Meredith there. Marbridge is a happy place and it’s wonderful to know it exists, but right now that thought is as comforting as it is uncomfortable, joyful as it is painful.
Who will take care of Meredith after we’re gone? I still hope Meredith will one day answer that question herself.
From April 2001:
With little steps, my daughter takes a long journey
I’m peering through the glass window of the door that separates the waiting room from the therapy rooms at the Easter Seals office. Amy, a physical therapist here, is guiding my daughter Meredith down the hall.
I watch in silence as she wraps Meredith’s tiny fingers around the end of a piece of rope. She then takes the other end in her own hand and gives it a gentle tug, and Meredith begins to take her little stiff-legged steps down the hall. The idea is to give the rope enough slack so that Meredith will have to take a step on her own, but also have the option to keep the rope taut when she loses her balance. So we wait for Meredith to take a step. And wait.
Sometimes it takes as long as 10 minutes to go 20 yards. If you saw it, you would never taking walking for granted again.
Today Meredith is being particularly stubborn about walking, so I decide to make a break from the waiting room to spur her on. I crouch in front of her and say “Keep going, you can do it.” Before I know it, Amy’s assistant is there too, telling Meredith, “Come on, come on, ” and then a little boy of about 8 wanders by and chimes in, “Go! Go! Go!”
Meredith, who is taking great delight in this attention, pauses to consider the encouragement. She has a gleam in her eye and a determined look, but my little mule will not budge. She remains standing awkwardly, stiffly, with knees bent. It’s as if her brain is saying “Go!” but her legs are responding “How?”
We plead some more. “I know you can do it, Meredith, ” I tell her. She smiles big. Her face says she’s ready to take a step.
But there’s no Kodak moment today. Meredith refuses to budge on her own, so Amy gives the rope a tug to tighten it and the two slowly wander down to the end of the hall.
Despite all the stops and starts, Meredith rarely gets frustrated. It’s as if she knows how far she has come. And so have I. Looking back at my journal detailing our first visit with another physical therapist, it’s painful to recall how my innocence as a new mom was shattered in one 30-minute session.
Feb. 6, 1998
I feel old. I feel like everything bad that will ever happen to me in my entire life could not be more painful than today. It was horrible watching Meredith fighting the physical therapist with tears streaming down her contorted little face. During one exercise to stretch out the neck muscles the therapist just about pushed Meredith’s chin up into her nose and Meredith was trying so hard to get her cry out, but couldn’t. All she could do was sputter and squeeze her eyes so tightly together that the tears were shooting out. The sobs were only stopped temporarily when the therapist, who was trying hard to be compassionate, would look at me and say “You can hold her now.” Next she put Meredith on a platform swing. Meredith wailed as she went back and forth not able to make any sense of her blurry world through her crossed eyes. Finally we left and took the labyrinthine route back through the hospital and into the parking garage. I got in the car, turned up the radio and burst into tears. This was my day.
Sometimes I wonder if we did the right thing by putting Meredith through that, but as parents who were told our daughter might never walk, it seemed like something we had to do. Today Meredith counts her therapists among her best friends. She smiles willingly when I tell her we’re going to school or going to see Christi, Amy or Shannon. If she falls down, she may cry briefly, but she seems to know it’s all part of a plan to get her walking on her own. She no longer needs me to rush in and hold her.
One day soon, she will drop that rope for Amy and take steps on her own. And I’ll cry again. But this time it won’t be from a place of despair and grief. Tears will come happily from seeing that as Meredith lets go, so can I.
From March 2001:
A disaster can make you grateful
Friends will try and tell you, but until the second child actually arrives you wave off their grave warnings about sleep deprivation and double diaper duty.
I should have listened. I’m exhausted. I’d define it as that kind of final exam weariness where you pray you’ll do OK on the test, but figure you should pass just for showing up on time. For me, it turns out I studied the wrong material because I’m totally unprepared for a 6-week-old with colic.
Just say the word. “Colic.” It doesn’t even sound like a nice word, does it? It seems that each night our infant Caroline is trying to beat her personal best in crying duration from the previous night.
And to top it off, I must look tired. Don’t you hate that?
I know this because the other day I was leaving the pediatrician’s office with Caroline in one of those portable car seats. These weigh about 75 pounds, you know. I was having trouble getting the door open because it was windy and a woman nearby took pity on me and opened it. As I walked by she said in that gentle I’m-a-mom-too voice, “Don’t worry. You’ll get stronger.”
I really hope so because there are days when I feel truly weakened by a little person of only 9 pounds. Still, I can look at Caroline and see that she’s the easier one in so many ways. Unlike her big sister Meredith, she doesn’t require leg braces, a walker, a communication book and a special spoon. Her needs are simply to be fed, changed and loved.
Raising a child with developmental delays has required me to dip in and pull out strength from emotional reserves I didn’t even know I had.
The other day when I was starting to feel overwhelmed by it all, I headed for the freezer. This was not only to get my Blue Bell fix, but also to look at the picture held up with magnets on the front. It’s kind of a grainy Polaroid and Meredith is not even smiling, but if you know her at all, you see a small miracle. She is standing with no support at all. Her arms are awkwardly bent like chicken wings and her legs are almost straight, but she’s lurching forward at the waist as if she would like to go forward, but can’t because her feet are stuck in cement. It’s not really a picture of my little girl so much as a picture of hope.
As I spooned into the Blue Bell, I took the time (freakishly, both my girls were taking naps) to survey the horrendous mess Meredith had made in the family den, which resembled something like Pottery Barn meets Gymboree.
As I grew more and more tired just thinking of cleaning up the toy clutter, I began to see that within the mess was a frozen snapshot of Meredith’s progress. In the corner of the room, her blocks sat silently stacked, three at a time.
Two years ago I cried after Meredith could not stack blocks for an Easter Seals developmental test. Next to the blocks, all the doors on her Fisher Price barn were open with the animals half in and half out. I spent the first 18 months of her life placing my hand over hers and tediously showing her how to open and close things because her brain was just not sending the message to her frustrated little hands.
The pillows on the couch were in disarray because Meredith used the coffee table as a prop to reach the couch and knocked them down en route.
I realized afresh that the room was a stunning disaster — and then with joy, realized that Meredith did it all by herself.
I decided right then and there that I wouldn’t clean it up. Sometimes, there’s beauty in chaos.
From Jan. 2001:
Going where you never expected
One thought was dominating all others as I sat in my first support group for parents of children with disabilities: Maybe I should leave.
The group’s facilitators had just passed around an inspirational essay called “Welcome to Holland.”
It goes something like this: A family plans a trip to Italy and they’re really excited about all the fine art and wonderful food they are going to experience. Then something goes horribly wrong as they hear the flight attendant come on the speaker and say “Welcome to Holland.” Oh the horror. This isn’t what they planned. My God, what will they do on a vacation in Holland?
Of course, they find that Holland is a pretty cool place, too. So, are you with me? In other words, if you have a child with disabilities, it’s not what you are expecting, but it presents a situation that can be pretty wonderful even if it is not what you planned.
OK, let me give Pollyanna a time out . I mean, seeing yourself buying maps in Holland because you are suddenly lost among the windmills hardly measures up to seeing your infant go through life-threatening surgery or getting a diagnosis that your son will never walk.
Sure it’s a different place from Italy, but I’ve always thought this hand out piece should be rewritten and called “Welcome to Beirut.” Now that would be a shock, wouldn’t it? All the other families are living it up in Italy, but you are in the war-torn Mideast. It’s bleak, they don’t even sell maps and you are trying desperately to understand a conflict that sadly appears to have no easy resolution.
This version more aptly describes my day when the lab calls to tell me they have to stick my little girl again because they lost her blood results. Or when my friend Tammy has to explain to another curious observer that, no, her daughter is not wearing brand-new shoes. They stay looking clean because she’s in a wheelchair .
Or my friend Laura, who didn’t get to hold her premature son Jason until he was nearly 5 months old, which turned into a lonely time because friends vanished when they didn’t know what to say. And then there’s Tonie, a single mom of twins who spends just about every minute she’s at home watching her 6-year-old son Griffin, who has autism, to make sure he isn’t running down the street naked or eating his feces.
I know “Welcome to Holland” is inspirational for some and I’m touched so many have shared it with me . What I’ve learned in support groups is that there is no right way to accept the fact your child is not typical. Some will cry, some will pray, others will spend hours on the Internet looking for answers. Others will look for humor. And, yes, some arrive in Holland.
The support groups, which are a collaboration between the Austin Independent School District, the Pilot Parent Family Resource Center of the Arc of the Capital Area and MHMR, will start up again next month and I will attend because I’ve become somewhat of an addict over the past two years. We all cope with this very different place we’ve landed in separate ways, but I know my friends in the group are always there for me on the days I feel alone in Beirut. And they’re the first to admit the tulips aren’t always easy to find. For a cynic like me, that’s very comforting.
For more information , call Tammy Mann at Pilot Parent, 476-7044. Groups meetare held Tuesday nights at Rosedale School, 2117 W. 49th St.
From Dec. 2000:
A new sister, and a new world
In less than a month I’m having a baby. My 3-year-old daughter Meredith has no idea how much her life is about to change with the arrival of a little sister. Frankly, I’m not sure what to expect either.
I guess it’s natural, when thinking about the arrival of their second baby, for moms to look back on the first and remember the thoughts they had then . In the weeks before Meredith was born, I used to sit in her nursery and imagine what she would look like and what sort of personality she would have. The furniture still smelled new. I remember that vision so clearly.
And I remember how it all changed so quickly. By the time she was 6 months old, the stuffed animals under her windowsill were replaced by toys made for babies with visual impairments. A giant purple therapy ball sat in the corner of her nursery.
The vision had changed.
In just a few short months, my husband, Jim, and I had gone from being told Meredith’s lazy eye was “something she will probably outgrow” to determining it was connected to a much larger problem. Sometime during the middle of my pregnancy, the midline part of the brain, called the corpus callosum, stopped forming in Meredith. We don’t know why. What it means for Meredith is that the two halves of her brain cannot “talk” to each other very easily. As a result, my curious, curly-headed little girl is developmentally delayed. It affects her walking, talking and reasoning.
I still remember the day when the diagnosis sunk in. Meredith had just turned a year old, and we had returned home from a gathering with friends’s gathering who also had a baby who was 1. Jim and I were stationed at either end of our hall, and Meredith was in the middle on her tummy on top of a scooter board. Fresh from a group where all the babies were cruising effortlessly, we watched our daughter painstakingly use her arms and, inch by inch, scoot herself down the hall. For a moment, I looked up and caught Jim’s gaze. He said simply: “It shouldn’t have to be this hard.”
We’ve come such a long way since that day — both emotionally and intellectually — with our happy-go-lucky little girl and her diagnosis, but my emotions about a new baby still remain guarded. It’s bittersweet to realize I will not travel the same road with this baby. Instead I will be splitting my world between Meredith’s very special one and a new baby’s completely typical one.
I think about Meredith and her sibling and the unusual path their lives as sisters will take. I’m guessing it won’t take long for the younger to become a role model for the older. Will Meredith wonder why walking comes so easily to her little sister? What kinds of questions will herthe little sister have about a big sister who deals with challenges she will never face?
I feel guilty already thinking about the responsibility I’m placing on this baby. She doesn’t even have a name yet, but I can’t help but see the benefits she’ll offer. She can teach Meredith about hopscotch, computer games and sharing clothes. She can tell her which concerts are worth lining up for and how to score in soccer.
Like her parents, our new baby will adjust to the two worlds in which we live, one with disabilities and one without. She will learn that it may take Meredith a little longer to get from point to point, but it’s her sense of humor, grace and unflagging will during the journey that make her remarkable.
Meredith sees the world not for the things she can’t do in it, but for how many people she can touch — and inevitably change — along the way. Especially, a little sister.
From Nov. 2000:
By living in the moment, we grab the real prize
Dressed head to toe in yellow and black bumblebee attire, my daughter Meredith eagerly points to her elementary school as we drive by. It’s the night of the Halloween carnival and the first official school event for my husband and me.
As we walk through the halls and peek in on carnival games, I realize that many of them are too advanced for our daughter, who has developmental delays and cannot stand up on her own yet or say any words. Still, we are determined for Meredith to have a good time and, as it turns out, so is everyone else. When it’s our turn for the hoop shooting, they let us bring Meredith right up to the net so she can push the ball in. At the duck fishing booth, no one thinks anything of Meredith tossing the fishing net aside and just sticking her chubby hand in the water to fetch a prize toy duck.
Just when you think life has rules, it turns out they can be broken. We left the carnival that night feeling like Meredith, who is 3, had the same experience as all the other kids there. My husband and I felt like every other family at a school event — an important step considering we’ve spent the past three years feeling like we have a whole different roadmap to follow.
Despite our wonderful experience, however, it lurks in the back of my mind that there will be times for Meredith when the world won’t be as kind or as accommodating.
I’ve found that school has a way of forcing a parent to look into the future. The teachers and school therapists and I set goals and then I look at them month after month and mentally record whether Meredith has reached them and when she might. I wonder if in years to come she’ll have a hard time making friends.? And what if she still can’t squirt glue onto paper without help by the end of the year? And when will she know that Monday is different from Tuesday?
Meredith, on the other hand, couldn’t care less about any of this. Her goal at school is simply to attempt to do what everyone else is doing and have fun at it. As I entered the cafeteria the other day, she was dipping her Cheerios in her applesauce and laughing at a little girl across from her. Meredith may have spent part of her day going up and down a ramp or learning to use a new spoon, but at that moment, she was as typical as any other toddler.
I’m beginning to realize how fruitless it is to dwell on the future because, by doing so, I’m sure to miss out on the gifts she is giving now, such as choosing to console a crying child instead of playing with toys during free time at school. The teacher was rocking the little boy back and forth in his wheelchair and Meredith wanted to help.
Watching this, it struck me for the first time that my daughter is growing up in a world where she sees nothing unusual about children in wheelchairs or in using sign language to express herself. Perhaps I shouldn’t spend so much time worrying about what’s to come, because what I’m seeing in the here and now is pretty remarkable.
And yet, from time to time, I can’t help but dream about the future and about filling in that “first step” and “first word” section in the baby book. That’s why I’m hoping that next year at the carnival, she’ll jump out of her stroller, run down the hall, and yell at the top of her lungs “I DON’T WANT TO FISH FOR DUCKS!”
From Nov. 2000:
One building, two pathways to joy of words
As a journalism major at the University of Texas, I spent hours in the Jesse H. Jones Communication Center laboring in the newspaper lab over every paragraph, every lead and every word of a story.
Today in the same building, I spend two hours a week absorbing every sound, every gesture and every hope that my daughter Meredith, 3, will have that first word.
Twice a week I take her to the UT Speech and Hearing Center so that a graduate student and professor can try to cajole a hopeful sound from her
tiny mouth, a sound that may someday soon become a word and a gesture that may eventually give us a clue about how she learns.
I always thought I’d return to campus someday with my daughter. I’d show her The Daily Texan offices and the classroom where I wrote my first lead. I never thought I’d return with her because she needs therapy to learn how to talk.
Sometimes you don’t have to look hard to find irony in life. Every Monday and Wednesday, it greets me at the door.
While it’s wonderful to have such a phenomenal resource here, it’s worry that has brought me here. My daughter, who is developmentally delayed, speaks no real words yet except for “da-da, ” which can mean anything from Daddy to a piece of toast, depending on what she is labeling at the moment.
Her concerned neurologist has said that things need to pick up with her speech in the next couple of years if she is going to talk. There is no magic pill or book or research to guide us in finding out exactly how Meredith will find her speech connections. Some weeks we see breakthroughs with new sounds. Other weeks, little progress. I can only wait and hope and keep having that same dream where she wakes up, looks at me and says “mama.”
Sometimes I feel panicked that I’m not doing enough. I bring this sort of panic with me each time I go to the UT lab. I put on the headphones and lean into the glass, which works as a two-way mirror, so I can hear and see Meredith’s speech lesson with a graduate student, but she can’t see me.
This is sort of like watching your child play softball inside a glass bubble. You mentally cheer her on because she doesn’t know you’re there.
In today’s lesson, Meredith is patting her chest — her sign language for “want” — and pointing to the Itsy Bitsy Spider game. The student begins singing the song, and Meredith beams. When she stops for Meredith to say a word in the song, my facial muscles tighten and my body gets rigid. I want to yell, “Come on Meredith. You can do it. You can say `spider.’ Keep your eyes on the therapist.”
There’s just silence.
Then Meredith gets a little gleam in her eye and suddenly says “TAH” with such force that any teacher would give her extra credit just for enthusiasm. It’s not “spider, ” but that’s what she meant and it’s the most beautiful thing I’ve ever heard.
I sit back in my chair , relax my shoulders and do an invisible high-five. She will say spider one day, I’m convinced of it.
As we leave the building, we’re surrounded by students . Perhaps one of them is leaving the building for a J312 newspaper assignment just like I did.
I think back on my journalism classes where I was taught to write about failures and victory, good people and bad people, disasters and miracles. As a newspaper reporter, I told other people’s stories for a dozen years — some of them about people who dove into a challenge head first when life handed them a curveball. Maybe it’s not so ironic that I should return to a building where I first realized that, for many people, life doesn’t always go as planned. The difference is now I know there’s more to their stories than what I wrote in my notebook.
From Oct. 2000:
Challenge was about more than a parking space
Armed with the required forms and a doctor’s prescription, I entered the Travis County Tax Office confident that all was in order for me to leave with a handicap placard to hang from my rearview mirror.
My number was called, and within six seconds of stating my need for such placard, I realized I was in trouble. The clerk looked at me, then the form, then the prescription and then me again. Then, she nodded her head and I just knew my day was now going to get complicated. “I’m sorry, ” she said, “but the doctor’s prescription doesn’t say what it’s supposed to.”
Despite calling ahead and checking with the doctor in person, I’ve been busted. O n a minor technicality over the doctor’s wording — a problem that appears to be based on information known only to two people in the entire city of Austin.
Politely we went around and around till the words from my mouth and the words from her mouth just couldn’t do the bureaucrat -civilian dance anymore. I asked if she could check the wording with a supervisor.
I waited. And waited. The office mood was quite jovial, and someone’s plate of homemade enchiladas was the talk of the cubicle. A person would saunter by, look at the food and make queries about who made it and how it better get eaten pretty soon or else. The laughs were abundant. It was a good day.
Not for me. As the chuckles over the enchiladas permeated my consciousness, all I could think about was how this day was just another day for a governmental office, but one of the heaviest days of my life. They hadn’t asked so they’d never know how I had spent months agonizing over whether to get the placard for my 3-year-old daughter, Meredith, who is developmentally delayed and uses a walker. This seemed like a “coming out” to the world that she’s not typical and, yes, we will need to park in the space with the painted white wheelchair.
Did anyone here have children, I wondered? My eyes began to mist as I pondered whether any of them ever worried their child might not walk. I wondered if they had ever endured more than 60 doctor appointments in less than three years. I had never anticipated fighting so hard for a parking space I never dreamed of needing in the first place. I gazed across the room to the clerk, who was getting the nod from a supervisor by now. The supervisor said no. I pleaded some more. Couldn’t I just get a break?
And then, you know, I did. The God of Bureaucracy came forward and decided the doctor’s wording would be sufficient for a temporary, six-month permit. Perhaps it was a sign that I only needed a temporary one because Meredith is going to walk. Someday. Soon.
I entertained the happy notion that maybe Meredith would wake up on Nov. 4 — the expiration date — and take steps on her own. It would be a joyous day and the two of us would toss the placard in the trash.
That was in May. A s the November date draws nearer, I know this is unlikely.
But come Nov. 4, there will be plenty of progress to note. Last spring, Meredith barely moved in her walker and today she goes several feet. I no longer get sad when I hang up the handicap placard. I just realize it’s a necessary part of life right now.
Maybe we’ve both taken some leaps since last May, Meredith and I. And that’s certainly worth celebrating. Over a plate of enchiladas.
From Sept. 2000:
A little girl and her gift from the sea
Don’t you hate it when you take your children to a place you loved as a child and they just totally don’t get it? Like you go to the zoo just to show them the polar bears and they are more fascinated with the popcorn. You take them for a pony ride and they hide behind a tree.
Let’s face it, it’s horribly disappointing and you can’t believe it’s your flesh and blood not loving every minute of it.
Knowing full well the emotional risks therein, I decided it was time to introduce South Padre Island to my daughter, Meredith, who is 3. Visits to the Gulf have created some of my happiest memories. For nearly four decades now, I have made this trek to take in the seaocean, hunt for shells and deep-sea fish. Spending the day being sick over the side of a chartered boat in the choppy waters of the Gulf was a virtual rite of passage in my family.
So it was with great anticipation recently that my husband and I took our daughter to South Texas. I never know how Meredith will react to new experiences. She is developmentally delayed and cannot talk, so it’s hard to prepare her for something as vast as the seaocean because she can’t ask any questions.
Right away I could tell she desperately wanted more information as her finger began pointing. She looked at the seagulls and pointed, and I said “seagull” followed by “beach” and “shell” and “bucket.” Each time she pointed at something, I would label it; soon we had the entire beachfront covered. Her little hand never gets tired of being her sole source of information gathering.
I watched her smile as the sea air hit her face and I did my best to explain the importance of the beach in my life. It was where I learned to swim out to the second sandbar. This meant bigger waves, better sand dollars and the coolness factor of hanging out with my big brothers. The Gulf was a sacred place where my grandfather spent many an hour explaining the finer points of hooking a kingfish. And later, it was a place that beckoned me to many a college spring break to flirt with boys and watch the sunsets disappear behind mountains of beer bottles.
Knowing Meredith was not old enough to understand the complexities of these memories, I had to settle for a sensory experience. I picked her up and sat her down closer to the tide and plunged her hands into the sand. We settled in for our first big wave. I braced her a bit as the white froth hit her ankles and crept around her back. A huge smile came over her face.
Then another wave. Smile. Then another wave. Smile.
Before long, she was gesturing in sign language for “more.” Every time the waves receded, she would sign “more.” And, without fail, the waves would come back again. It was like magic to her that the waves never gave up on her command. In silence I watched as a new tradition took hold between the sea and my daughter.
I’ve always known the sea had a language of its own, one that has inspired writers and soothed souls. For a moment in time, it spoke to my little girl.
And she answered.