Somewhere on the Spectrum
When I was 24 years old I gave birth to my first child. He was a beautiful boy, whom I named “David” after his father, and his father before him. I had been married just barely a year, and this little baby who was the spitting image of his father, seemed perfect in every way. Life was amazing, and by the time David was 8 months old, I was pregnant again! Up until David was about 18 months old (and I had just given birth to his little sister, Madison) my husband and I were in a state of bliss about our little family we were building. Who can really be prepared for the moment your life changes irrevocably? The best way to bring you to that moment in time is by sharing part of a baby-book entry that I wrote to David after his 18-month checkup:
“My Little Man,
This is going to be the hardest entry to write since the day you were born…
It all started with a trip to the pediatrician. We had always taken you to the same doctor, who was great, but once you started getting sick all the time I needed a second opinion. So, to get another perspective, we saw a new doctor for your checkup. One of the things I asked her was if it was normal for you to only be saying “Dada” at 18-months old. She asked me some other questions, like: Can you walk backwards, or kick a ball? Do you follow simple commands such as “bring mommy your shoes”? most of which are things you haven’t started doing yet. She then asked if you flapped your hands in the air. At that point I realized she was thinking you were autistic. I thought she was out of her mind!!!So, I took you to another pediatrician, who didn’t seem concerned about you having autism at all, although he did agree you had some developmental delays. We were referred to a neurologist for a developmental evaluation, who after his exam wanted to do some routine blood work to rule out certain things that could cause speech delays. When the blood test results came back, the neurologist called and said that he wanted us to have the test done again, because there was a high CK reading in your blood and he wanted to make sure the test was accurate before reaching a conclusion. After the second blood test, we met with the neurologist in his office. He told us about a rare disease called Duchenne Muscular Dystrophy. That it’s a muscle-wasting disease that affects first the muscles of the legs, arms, and torso, then eventually the heart, lungs, diaphragm, etc. One in every 3500 boys are born with this disease, and those affected typically lose the ability to walk before age 12, and life expectancy beyond age 30 is rare. Due to the extreme CK levels in your blood, he thinks you have Duchenne. But we have to get genetic testing done to confirm this, which could take weeks. I don’t know how we’re going to do this, because we leave for Texas in two days….”
We were packing up our home in Florida, because my husband had been promoted to a new position in Texas, where we didn’t know a soul. About 10 days after arriving in Texas we received the genetic testing results confirming our beloved son had a deletion of exon 45 in the dystrophin gene. David had Duchenne Muscular Dystrophy—a terminal disease. My husband and I were in shock, completely devastated, and over 1000 miles away from family. The thought of autism was quickly forgotten in the wake of this news, at least for a while… Honestly, there’s a whole lot more to this part of the story. David being diagnosed with DMD has unquestionably changed my life almost as much as it will change his, and I have dedicated countless hours to public speaking, running, fundraising, and advocating to help end neuromuscular disease. To read more of THAT part of our story, visit https://www.crowdrise.com/musculardystrophynychalf16/fundraiser/michellebussiere
Back to Autism, because no matter how much we were focused on his physical disability and what our future held, we couldn’t forget about David’s immediate needs. Because of David’s developmental delays, he began evaluations of almost every sort, and soon began speech therapy and physical therapy twice a week. I made some new friends in Texas, and found that when we all got our kids together, David was, well… different. He didn’t play with the other kids, but would be off by himself. He did not speak to them or engage other children. And he had an obsession with doors. Open/close/open/close/open/close/open/close.
He started to become frustrated with his speech delay, and began having tantrums and meltdowns. He started to hit his little sister, Madison. Birthday parties were awful, because he would always have a screaming, huge-scene meltdown, but I didn’t want to offend my new friends and tell them “no” to every single party or play date. One of my new friends was an SLP who worked with kids on the spectrum, and by this time my “mommy radar” had kicked in and I knew something was definitely different about David, and it didn’t have to do with DMD. I asked my SLP friend for advice, and she referred me to a wonderful neuropsychologist who evaluated David, and diagnosed him with Autism Spectrum Disorder just over a year after receiving his Duchenne diagnosis.
The neuropsychologist stressed that early intervention was key, and we found an extraordinary preschool for David that would supply full-time ABA therapy. David made progress in leaps and bounds during the three years he attended that school. We had so much information at our fingertips, and behavioral specialists available to answer our many questions whenever we needed help. David attended the same school until we were again corporately relocated out of state. This time it was good news: we would finally be near friends and family in Pennsylvania.
We’ve been here in PA nearly six months now, and although we absolutely love our new home, to be perfectly honest: it’s been a struggle adjusting. For any child, moving 1500 miles from the only home you can remember is traumatic—even if you’re excited about where you’re moving to. But David has shown us that this move has been extremely difficult for him. While waiting for the closing on our new home, we had to live in a hotel room for almost two months. David’s behavioral issues skyrocketed due to all the change, and it didn’t help that I didn’t follow-through with many of his program protocols because I was just trying to keep him quiet and not get us kicked out of the hotel because he had another meltdown at an ungodly hour AGAIN and disturbed everyone within earshot of our room. I thought things would improve once we got into the new house and settled in. We’re still working on getting there.
There is nothing in PA even close to the school situation we had in Texas, and the waitlist for services here is long. We are still working to get him all of the services he needs, and although progress is slow (by my standards) we are slowly but surely getting where we need to be. And even though I’m impatient to become settled here and provide David with everything I feel that he needs, I’m finding that my search brings me in contact with so many people here that I wouldn’t have met otherwise. There are little blessings that come with a lasting impact from meeting people who you can relate to, and I am grateful for that.
Our story is not just about Autism. I don’t think anyone’s story really is. But I hope that somewhere in everyone’s story there’s a place where we find hope. Each of us taking each day at a time, the good days and bad days in stride, the opportunities to love and learn from each other, to make the most of each moment we have together and never take our time together for granted—because we will never get those moments back. And that whatever diagnosis we face doesn’t define us, nor does it define our children. I look at my son after both of his diagnoses, and I know that these are just things he HAS, they are not what he IS. He is so much more than that. And while I will always wish I could make things easier for him, I would never change HIM at all. And you know what, he’s still pretty darn perfect. Spectrum, deletion, and all.
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