Here is Megan's story....
Thursday morning. I start my day off by buckling up my two non-verbal boys on the school bus and sending them off to our local public school. When they get home from school, they don't share stories with me about how their day was or what they learned in school. Instead, I fix them a snack and then open up their backpacks and pull out my communication notebooks with their teachers to see if there are any notes to me. These notes can be about good days- accomplishments, new goals they met, sweet moments they shared with their peers, toilet training success, etc. They can also be about hard days- meltdowns, acting out, tears, etc. Then we pack up the car and head to our after school activities- speech therapy and occupational therapy.
This isn't the way I viewed my journey of motherhood. Six years ago, as I was setting up my baby boy's jungle nursery and talking to my huge belly, the words 'autism' and 'hypotonia' weren't even on my mind. Now they consume my life 24/7.
AJ's story starts the way all children's do. He was a healthy and happy baby, hitting all of his milestones on time. When he reached the age of 9 months, we started having concerns about his gross motor skills. He never wanted to do tummy time and we didn't know how he would ever learn to crawl because of it. We also noticed that while he could sit independently with no problems, he would still fall over more than other babies his age. He would lose his balance really easily when he would try to reach for a toy. So, we found ourselves constantly sitting him up in front of furniture or with blankets and pillows around him so that if he did fall over, he'd have extra cushion for support.
This is when our journey to a diagnosis started. We got AJ into physical therapy and we started pushing for answers from our doctor. We knew it wasn't normal for a child to scream and cry like AJ did when we tried to get him to put weight down on his legs for standing. We took AJ in for his 18 month check-up with the doctor and it was a very standard appointment- weight and height check, standard autism screener (which he passed), and shots. We shared with the doctor how he was doing the "touchdown" command and roaring like a lion and exploring many new foods. She then ordered some blood work and referred us to a neurologist to try and get some answers for his gross motor concerns.
We went in for our consultation with the neurologist the next week and after observing AJ for a little bit, he sat down and told us that he thought AJ needed to be evaluated for autism. We were in shock. He had just passed his autism screener the week before. I called our pediatrician when we got home and even she was upset, saying how she saw no signs of autism with him. Our family had trouble understanding it too. However, within that next week, AJ completely changed before our eyes. He stopped doing tasks that we asked of him, he started crying all the time, he would get upset if we went to other people's houses (even ones he was comfortable at), and he started refusing most foods. He became a different child all together. When we saw our pediatrician a few days later to discuss the neurologist appointment, she reevaluated him and decided he needed to be referred to an autism specialist.
The wait to see the autism specialist was about 6-9 months at that time. In the meantime, we kept trying to pursue answers for his gross motor delays. However, every time we saw a new specialist about that, they just told us the same thing- he needed to be evaluated for autism. We were very frustrated and felt like we couldn't make any progress. We finally ended up receiving a diagnosis of hypotonia (low-muscle tone) and then a few months later, AJ was diagnosed with low-functioning autism.
Our battle to get AJ help didn't end there. As we started to explore ABA options for him, we found ourselves getting turned away because of his gross motor delays. We were told hat ABA couldn't help him much until we were able to get him walking. It was very frustrating to say the least. All those months we spent TRYING to get him gross motor help and we couldn't because everyone said we needed to address his autism first.Then we get the autism diagnosis and everyone says we still can't get him help until we address the gross motor delays.
Fast forward two years later and we have finally settled in to a nice routine with AJ. We found a wonderful therapy clinic that offers him individualized therapies (speech, occupational, physical). We still struggle with insurance, trying to prove that physical therapy is a necessity, but that's a whole other issue. We also have an amazing support system at school for AJ. They work with his outside therapy to make sure that all of the goals (both short term and long term) that are set for him are consistent and being focused on at the same time.
And as I sit and write this, we are currently on the wait list for our second son to be evaluated for autism as well. Its easier the second time around, and harder as well. It's easier because I know what is ahead of me. I know what to expect during the evaluation process, I know what kind of forms I'm going to need to fill out, and what calls I am going to have to make. I already have a support system, and a therapy clinic that I love and trust for my boys. I already know everyone at the school that will make up his IEP team and hopefully they aren't too sick of me yet! I'm more prepared the second time around. And I have more coffee on hand!
In other ways it's harder too. The autism spectrum is so large, but for me, I've been primarily focused on the version of autism I see with my older son. However, autism looks very different for both of my boys. One of them is a picky eater, the other isn't. One of them likes loud noises and music and high energy environments and the other hates it. One of them insists I wear my glasses every hour of the day, and the other ones is constantly removing them from my face. Getting a second diagnosis means having to learn an entirely new version of autism.
Autism has taught me many things over the last couple of years. It's taught me patience. It's taught me how to communicate without words. It's taught me how to appreciate small victories and to measure success in inchstones instead of milestones. It's taught me how to function on little sleep. Its taught me to never give up hope. My oldest son is just about done with kindergarten and I have seen him accomplish things this year that I never even imagined. He's typing, he's matching colors, he's matching letters, he's following verbal directions, and he learned to walk! And as I begin this autism journey with my second baby boy, I'm sure I'm bound to learn even more.