Diagnosis Stories: David
Thank you, Kim for this amazing story. Please visit her blog:
In the Beginning:
A lot of people have asked us if we’re prepared for Katie, as a special needs child. We should start at the beginning. Eight years ago this week, our first child David was born.
Chris and I were clueless. I was 26 and Chris was 31. And Chris had never held a baby. We bumbled through the first few months in dazed ignorance. David was amazing – seven pounds, eight ounces of incredible baby bliss. He was the easiest baby. He slept so well, ate like a champ, and never cried. We went for walks, went to the library, and snuggled all day long. I would hold him and tell him about all of the things he would do when he got bigger. I would whisper in his ear how much I loved him while I rocked him and rubbed his back. I would stare at him and trace his little eyes and nose, hoping to never forget how he looked, how he felt in my arms, how he smelled, how soft his skin was, and how much I loved being his mama. For the first year our lives with David were perfect. He was a healthy, perfect child.
Three weeks after David turned one, Henry was born. Obviously having a one year old and a one month old was difficult. But really, we made it work. David was interested in Henry, but really not much. David pretty much stuck to himself. At his one year check-up, I mentioned to the pediatrician that David wasn’t talking at all yet. She wasn’t concerned. And he was my first child – I really wasn’t that concerned either. As we approached sweet Henry’s six month “birthday”, I noticed how much Henry was babbling. It was such a sweet, bubbly sound. And one that David never made. Ever. He never did any sort of “baby talk” or babbling, or even reacting to sounds. I even wondered one day if he could hear me, because he almost never reacted if you were not right in front of him. I remember one time clapping my hands really loudly behind him to see if he would startle. (He did!)
I brought David back to the pediatrician, and she again said she wasn’t concerned that he still wasn’t talking. She assured me that he would “talk when he was ready”, but I insisted on a speech evaluation. Someone from Tennessee Early Intervention System (TEIS) came to our house and evaluated him. We had a hearing test done, which he passed. The TEIS evaluator remarked that David was “so smart”. His results came back delayed, but not delayed enough to qualify for services. I wasn’t OK with that, so we had a private evaluation done at Vanderbilt’s Bill Wilkerson Center. He was diagnosed with apraxia of speech. At eighteen months old, David had the expressive speech of a six month old; exactly the same as his infant brother Henry. I researched everything I could about apraxia. And none of it was good. Everything I read talked about how difficult apraxia can be to overcome, how it can make learning more difficult, and how most children with apraxia require speech therapy into middle school. I was determined that David would overcome his apraxia, and that he would speak like other children his age. We started with sign language. We had a food board and other visual aids to help with communication. We went to speech therapy sometimes three times a week. We practiced at home. We enunciated everything with explicit expression.
David turned two, and we brought cupcakes to his group speech therapy class the way people bring them to school. I potty trained David on the little potties at Vanderbilt. We knew the birthday of the woman at the front desk and which floors of the center had the best vending machines. He had two surgeries to aid in his speech development.
David turned three, and his speech therapist brought him a cupcake this time. We kept going to speech, and we kept working hard. And it worked. . . It WORKED! Three years after he started, he was running ahead of me to the classroom and his speech therapist looked at me with tears in her eyes and said, “He’s done.” I was confused – I had no idea what she meant. She said it again. And we walked out of that center shocked. And so thankful. It worked! We were done! David was “normal”. But really, I think deep down I knew there was more.
Shortly before David’s fourth birthday, Jack was born. We had Henry’s birthday party that year at Chuck E. Cheese’s. And David spent most of it underneath the table. David was also in his second year of preschool. He loved school, and loved his teachers. When I asked the teachers about his friends in the class, they would hesitate. They said that he liked to read books and play around kids, but that he didn’t interact much with them. They were quick to tell me that most kids that age did the same. They also said that David would sit at the end of the table at lunch instead of sitting with everyone else. I asked him about that. . . he said, “I don’t want to smell they food.” He had a very sensitive gag reflex; if he even saw me feeding Jack baby food, David would throw up. At preschool performances for Mother’s Day or Christmas, David would stand on the stage with his hands over his ears and his eyes shut. For the entire. performance.
David hated to have his hair cut. He was an exceptionally picky eater because he couldn’t stand the consistency of certain foods. He wouldn’t walk in the grass without shoes on. The only child he really was ever interested in playing with when he was little was Henry. Other than that, he would play around people; next to them, but never really with them. He was incredibly smart. As I type all of these things, I feel ridiculous. How did we not see it? Did we know it but not want to admit it?
When David started Kindergarten, he was so excited. I was so nervous. I was seriously going to drop my FIVE year old off with strangers for the entire day? For five years I knew everything this boy did, when he did it, and who he did it with. He was rarely out of my sight. And I was just going to leave him there? I remember parking the car on the first day and seeing him in the rearview mirror with his eyes wide and his backpack on the seat next to him. He unbuckled from his booster seat and climbed out of the car. I reached for his hand and he hesitantly slid his little cool hand into mine, then immediately pulled it out. He said, “I love you, but I don’t want to hold your hand here, OK?” We walked into the gym, where everyone waited before the classes were dismissed to their respective rooms. And he lost. his. mind. He was holding on to me, screaming and crying. He had to be peeled off of me and physically carried to his class. And not just for the first day. . . for the first three months. Finally we realized it was the gym – he couldn’t be in the gym with all of the noise, all of the people, all of the sounds, and all of the smells. I got to school later, so he would be able to go directly to his classroom, and all was well. There have been many, many things like this with David – things that are too much, and we find ways to deal with them.
David turned six and I knew first grade would be better. His teacher was fabulous, and he was familiar with the school. The first day was like Kindergarten all over again. Quickly though we went back to arriving later and life was good. Six weeks into the school year, we moved. And had to switch schools. I had a pit in my stomach thinking about how that would go. It was a better transition than we expected, and his new teacher was equally amazing. His papers started to come home with drawings on the back, and he had a hard time focusing in his classes. His teacher told us how smart he was, and how easy the work was for him. She said that all of the kids in the class liked David, but that his social skills were a little off. He hated group work – because the work was too easy for him, but mostly because he wouldn’t be bothered to work with other children. He wanted to work alone. At home, his behavior started to become increasingly difficult. He had lots of tantrums. And I’m talking epic tantrums. About seemingly nothing. Tantrums that would last for an hour. He would have a total meltdown if something tiny happened that he was unhappy with. He would say cruel things to his brothers and have zero regard for how it made them feel. He would fixate on one thing: watching Star Wars, playing Cars, playing Legos, watching Indiana Jones, learning about the solar system. And then he started some weird eye blinking. I made an appointment with the eye doctor, and he needed glasses. Problem solved. Except it wasn’t. He started a head shaking and shoulder shrugging. I video taped him one day, and he told me it was a “deskercise”. Um, I don’t think so.
David turned seven during first grade. He and Henry had a joint birthday party, and we had ponies. David rode that pony for four hours. The only time he got off was to blow out his candles. He said, “When I was on that horse, my brain slowed down.” I wanted to cry.
I made a doctor’s appointment for Henry and David. Henry had a rash, and I wanted to talk to the doctor about the head shaking and shoulder shrugging. I dragged them both in, and we met with a doctor I had never seen before. He was really nice. He looked at Henry’s rash and said it was excema. We talked about David’s shoulder shrugs and head shakes. I showed him the video. I tried to make it sound like it wasn’t a big deal, because David and Henry were in the room. He asked me some questions about David. And by some I mean like three or four. Not like forty. And then he said, “David has Tourette’s Syndrome. And I think he is autistic.” What? Um no. Henry has a rash and David shrugs his shoulders. He does not have Tourette’s Syndrome, and he most certainly is not autistic. What the hell? Shouldn’t it be a big deal when your kid is diagnosed with autism? It shouldn’t be by some guy you’ve never met, with two of your kids in the room fighting over who gets to put the cochlea back in the 3-d model of the ear.
We got a second opinion with one of the best pediatricians in town. He agreed with the first one. He referred us to an amazing pediatric neurologist. He confirmed. Tourette’s it is. He referred us to the Kennedy Center at Vanderbilt for an autism evaluation. They had a twelve month waiting list. A freaking year. Are you kidding me? There was absolutely no way we would wait a year. My child needed help NOW. His behavior was becoming increasingly more challenging, and I was becoming increasingly more distraught. Our neurologist sent us home with some surveys for us to fill out and for his teacher to fill out. He referred us to a pediatric psychologist who did more evaluations. And damn if David doesn’t have autism. How did we live seven years with this child and not know? How could I, his mother, not know? How could he have been so evaluated and seen by so many medical and therapeutic professionals, and nobody knew?
I was a wreck. I couldn’t wait a year to get this child services, and I couldn’t get them at school because by the time we got our diagnosis, school was out. So we called Ms. Dana. I was in an absolute panic at that point. At our first appointment, we knew it would all be OK. Ms. Dana also diagnosed David with sensory processing disorder. (Are you keeping count? That’s four major medical diagnoses. He was seven.) Dana pointed out that nothing had changed – it just had a name. Or three. And she talked me off the ledge. And she was right; nothing had changed. So we replaced speech therapy with occupational therapy. And we carried on. We don’t talk about Autism with David. Or Tourette’s Syndrome. Or Sensory Processing Disorder. He goes to speech, but because he has a slight lisp. Not because of anything else. And he knows he goes to “exercise class” with Ms. Dana, but he has no idea why or has never asked if he questions it. And he is so much more than a diagnosis.
He is a mediocre baseball player.
A fish-like swimmer.
A champion Twister player.
A fast runner.
A master lego builder.
A Cub Scout.
An Oompa Loompa in the school play.
A voracious reader.
And an enormous part of the reason we are willing and excited to adopt a child with Down syndrome. We never set out to be the parents of a special needs child. Honestly, we never thought about that club until we were members. But here we are. Being David’s parents has changed us forever. And, while we wouldn’t ever have asked for David to face the challenges he has faced, we wouldn’t change a single bit of it. David has taught us to be more patient and more forgiving. He has taught us to be more tolerant and much less judgmental. He has taught us that different isn’t scary. He has taught us about unconditional love – that even in the midst of his worst tantrums or uncontrollable behavior, he is still the seven pounds, eight ounces of baby perfection. He is smart, and witty, and insightful, and amazing. And perfect, just the way he is.
My life started when David was born. And all of his challenges have made him, and me, better. Everyday, I want to be a better person for David, Henry, and Jack; but David started it all. David has taught us that life is hard, really hard sometimes, but that when you get through the hard, the other side is more beautiful than we could imagine. I will be thankful to David forever for the lessons that he teaches me. And I will forever be thankful to David for bringing me to Katie, for if we had not known that we could parent David – a special needs child – we would never have considered adopting a child with Down syndrome. David has not just changed our lives, he has changed the life of a sister 6,000 miles away.