It took him a long time to sit up, I always thought it was simply because he didn't have the weight or girth to hold up his length and big head. Now that I know about the vestibular and proprioceptive senses, and what happens if they don't function quite as they should, I know that could be part of it too. I have an idea of why he might have been wailing for hours most days, one possible piece of the nursing difficulties, and why he would only sleep in a room all by himself, with blackout shades, and white noise.
Before my darling beast was even born he was overreacting to sensations. He routinely kicked the stethoscope off my belly when the doctor tried to listen to his heartbeat. Bob and I sat down for an opera, and he NEVER stopped moving. Not once. For the several hours we were there.
As much as I love the quote, "the plural of anecdote is not data," it's hard not to take Simon's early months and years as solid proof that sensory processing disorder is something you're born with, and something that shows up from the beginning. It could be that my son and the few people I've heard similar stories from are the minority, though I doubt it. I don't have a good resource for my own very early childhood, so I may never know how much of a sensory infant I was, but just as I see a little bit of Simon's possible future in my own adult sensory world, I think I can see a little of my sensory past in his young life.
I hope that the awareness efforts make headway into having SPD better recognized, funded, and researched, so we can all point to the data to show that our kids aren't coddled, undisciplined, or poorly raised, but they are truly born this way. That we can back up the data with our sad and funny anecdotes, instead of relying only on those. I love data for it's own sake, but with this, it's personal, it's my child's future access to resources, to tools and understanding.
For now though, I'll just let the plural of anecdote be anecdotes, and tell all the stories and share all the photos that help people understand his little sensory life.
4 comments:
When I think back to my son Andrew's first few months of life, I realize the sensory processing difficulties were there. I saw them, but chalked it up to something else that was happening... He rolled over late, sat late, walked late-he also had torticollis, so we chalked it up to that because they said those motor milestones would be late. He never babbled, but he had a lot of ear infections at that time of his life. Andy didn't talk until 27 months, ear infections resolved at 15 months. He wasn't easily soothed or calmed, he had to be held in a certain position by his dad only. Being on the short side, I just figured he was too "crunched up" with me and couldn't get comfy-stretch out like he wanted. He was terrified of our pet, terrified of his little sister when she was born until she was about 8 months. He's always disliked music and singing. He has always preferred to go to bed without fuss-no snuggles, just put him in his bed and leave him be. Sometimes I beat myself up for missing those things, but our hope was that it would resolve once he started talking, that they were behaviors as a result of not being able to communicate. I fought for speech therapy at 18 months-the doctor reluctantly agreed. By 20 months he was in developmental therapy, speech therapy and occupational therapy. He's now 3, speech production is no longer an issue, and he still receives OT and counseling services. He's come so far, as have we, in finding his triggers and helping him manage his sensory challenges. I can't imagine where we would be without the help of that early intervention team (some we still work with). He's now in preschool through our local school district (they don't recognize SPD, but he has been diagnosed with anxiety disorder, so he got in with that). Thank you so much for sharing your thoughts (and allowing me to share mine)!
Sharing helps me SO much! I love hearing other people's stories, it's great to know we're not on our own.
My daughter was diagnosed SPD when she was 6 1/2 but looking back at her as an infant, I think there were signs that we missed as well. She is mostly under-responsive so her signs were not so obvious. Like the last post mentioned, she was low tone, had torticollis, and met all of her milestones late. She was born with fluid in her ears, failed the hearing exam in the hospital and started with ear infections at 6 mths. By 9 months, she had her first set of tubes put in and it was only then that she really heard anything. Most of her SPD signs revolve around eating. She refused to nurse; cried, screamed carried on like I was hurting her. We had to try several nipples before she would eat and it ended up being a preemie nipple that she would take. She would only drink the bottle if it was what we called "the perfect princess temperature". She had some trouble keeping formula down and was losing weight. In the end, what worked was the Good Start formula and Doctor Brown bottles. She was never a great sleeper and still isn't. Her speech was very much delayed and by age 2 only had a handful of words, if that. She didn't qualify for services through EI because her comprehension was so strong. Once they averaged her scores, it bumped her up too high. We had to wait until she was 3 and qualified through CPSE. By that point, she was a full year behind in every area. She is now in second grade and still gets OT, PT and Speech
Wow. My baby girl was diagnosed @ 3 hrs old and began ot. She is 7yrs old now and still receives ot weekly, also sees a social worker weekly and we just started Meir feedback therapy which she gets 2/wk. Looking back she did a lot of the same things you all talked about. Let's see, she cried for hrs as an infant couldn't hold anything down, was diagnosed as failure to thrive, reflux and colic. Only formula to work was the Good Start too but we still had to start solids at 4mths, she was still all ethic to most baby foods though. She didn't tolerate being held and would only sleep in he crib in her own room by herself. Some differences, she talked very early, walked and met all of her motor milestones very early. Her current diagnosis today are: Sid, ADHD, dyslexia, anxiety disorder and asthma. She's an incredible girl and I lover to pieces. My saying to her (from Oliva, the pig). Miah I love but sometimes you wear me out!
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