My oldest is 10 now. Wow! How did that happen? From the moment I held him in my arms I knew he was special. All of us moms can probably relate to that! No matter that he didn’t come from my womb, I knew he was meant for us. As the months passed, and I revelled in motherhood, a persistent nagging began to form in the back of my brain. While my baby boy was incredible, he seemed to lag behind other babies his age. Not to worry, said everyone! All babies develop at different rates. Ok then! Momentarily placated, I enjoyed every moment of his babyhood. I didn’t really understand that you don’t have to teach a baby how to roll, they just do. But when he didn’t roll by 7-8 months, I started teaching him. When he didn’t sit up willingly by 8-9 months I let him sit without pillows and he learned because he didn’t like to fall down without them. When he should have been crawling, I was teaching him how to move his legs…and he did, at a year. He wasn’t severely behind, but I knew in the back of my mind there was more at play than just his “regular development” being a bit behind. When walking came very late and having to teach him repeatedly how to get in and out of the stroller came along, I knew. I just knew. But everyone said it was “normal”.
When he kept repeating my words but not forming his own unique ideas others started to notice. When he’d suddenly scream out for some random reason, others started to notice. But they didn’t say anything.
Not until a nurse asked. It was one of our routine visits with my younger daughter, who was a baby at the time. The nurse asked if I had gotten a speech assessment. I thought that was the last thing he needed b/c he was so great at mimicking and therefore his ability to say words was incredible.
No, I didn’t listen then.
But a few months later, I wondered if his increase in meltdowns was “normal” for a 2 yr old? I wondered if his food aversion wasn’t him just being a picky toddler? I wondered…then I asked for an OT eval.
I was told he had severe Sensory Processing Disorder. What did that mean? What could I do?
I have learned so much since that time, eight years ago. So much.
It used to be so intense, the meltdowns, the anxiety, the insecurity all bundled in that little body…and all the adjusting things for him to make life less traumatic and more “safe”. We had 3 more babies after him. And during that time I realized that most of them had severe or moderate sensory issues. Managing it all has been challenging.
At first, it was great to have a sensory diet. To be proactive. There was also Sensory Integration, which I found harder to implement.
As they grow it has changed. Some things work, some things have drastically changed. For some of them, their systems have matured and they are able to deal with more, in a sensory way. I have seen this especially in my oldest, who has since been diagnosed with Aspergers Syndrome. He has matured and can now regulate himself at home fairly well. At school? A whole different matter. In fact, we’ve changed his schooling to doing part-time at school and part-time homeschool. This has worked tremendously. His ability to cope has increased 10-fold! He can have his social interaction and two core subjects at school. Then he can come home to a (mostly) quiet home and do two subjects with me. We can integrate whatever he needs sensory-wise in his afternoons with me. It’s great. And still challenging at times.
I have learned so much through this whole experience. One of the biggest things has been that some things (therapy) work and some things don’t. Every child will have something that does or doesn’t work for him/her….and then sometimes the things that HAVE worked change, and they don’t work like they used to. One example being joint compression and brushing. It was great, but not for long.
I have learned that even kids with Aspergers can adjust to change given the right tools. My superstar, J, has risen to the challenges this year, when in the past he would have given up. I can talk to him now about how his body feels and what he needs to do about it. He regulates himself more than I have to regulate him. I know he’s going to be fine.
I want to encourage all of you in the midst of the initial diagnosis and in the toddler years. It is so intense for you right now, I assume. It was for me. Keep it up. Do not be discouraged…but if you are, just KNOW that what you are doing IS helping. You will not be in this intense stage forever. It will get better as they can communicate and get to know their bodies better. As you adjust yours and their lives to cope more easily, it will become just the way it has to be.
I have three others that have moderate to severe SPD and I keep telling myself that. LOL!
With him (and not my others, I haven’t gotten into their story much) I can see a glimpse of “the other side”. When he was little all I could see was what we were dealing with at that moment and what could I do to prevent a meltdown/crisis that day/moment. Now, I can see his growth. He is more tuned into himself than the average joe kid who doesn’t know why he’s having a rough day. I am so proud of my boy. He has moments still. Quite a few, but I see growth, and it’s exciting.