At 2 years old, Xander was dismissed from Early Intervention services through our school district. They had mostly been watching him develop and were happy with his progress especially after he started walking and talking and felt like they couldn’t do any more for us. I definitely agreed at that time, he was doing great.
Over the next year I started to notice things here and there. He’s a really sensitive kid (cries easily/gets overwhelmed easily) and I’ve tried to adapt and adjust things here and there to not set him off, like the last time he got a hair cut at the salon I told them to adjust the chair up before he got into it because the moving chair freaks him out. Not a big deal but things started adding up. This spring it seemed he had regressed. He refused to go on swings and slides at the park that he had done last summer, he freaked out at the dentist when the chair moved up and he wasn’t expecting it and had an unpleasant experience when six months prior he’d been fine with the dentist visit, he was holding onto your arm for dear life in the bath tub when you tried to wash/rinse his hair and started freaking out on bathroom changing tables/requesting to be changed on the floor (in a public bathroom? Sorry kid, no way. Ew. Better make it fast Mama). And I try not to compare him to other kids, but I’m not perfect and it’s inevitable. When we were at playgrounds there were kids Xander’s age or younger that were bigger than he was and fearlessly climbing on the equipment and going down slides and on swings while Xander basically climbed up and down the same steps a million times, I worried.
I thought maybe it was due to his age as they can start having fears around 3, but in talking to our ECFE teacher who is also a special education preschool teacher, she thought it was possibly a vestibular sensory processing thing and recommended an OT evaluation if I was really concerned. She didn’t think he would qualify from what she saw of him in class but I thought it wouldn’t hurt, and maybe if it was something mild I could get some tips at least from the evaluation on what to work on him with if he didn’t qualify. I also started reading books on “the Highly Sensitive Child” which does address some of his behaviors but as the ECFE teacher mentioned, sometimes sensitive kids and sensory issues go hand in hand. I would go back and forth telling myself these are typical toddler behaviors and I just don’t know what normal looks like because I’m a first time mom to thinking there was “something” I couldn’t put my finger on. He also seemed to get frustrated easily and despondent if things weren’t going his way and didn’t have good coping skills. Sometimes if I tell him “no” to something at home he will quietly go to his room and I think he’s just moving on to play with something else, but when I check on him he’s sitting on his bed quietly crying or doing big sighs and all dejected. What part of this is a three-year old’s act to get his way and could a three-year old actually get depressed? Oy vey!
I feel like people think I’m the crazy overly concerned mom that was just trying to make something up about my child because of his preemie history and he’s my “special snowflake”. I don’t want anything to be wrong with my child after what we’ve been through, and if he does have challenges and we can get him some help sooner than later so he gets the coping skills he needs to do whatever he wants to do, let’s get him that help. All I’ve wanted for us is some “normal” with his early birth and growth challenges. I feel like we had that for a while, and it was hard to face that there might be something “wrong”.
Thankfully insurance companies are pretty good about getting kids OT help earlier than later these days; we didn’t need pre-approval for an OT evaluation and it was covered. We went to a 2 hour evaluation and I was proud of a lot of his skills and worried about others. By the end of the session I had the feeling the evaluator thought he should be there. We went to a small conference room to discuss. She said they would probably want to start him with therapy there two times a week. In their opinion, he has sensory defensiveness, gravitational insecurity, is delayed or below average in fine and gross motor skills, and has trouble with filtering sounds. He has also retained some primitive reflexes that babies usually lose between 6-12 months and his neurosystem is underdeveloped.
Wait, what!?!?! I wanted validation in what I was seeing, but therapy twice a week? This is going to throw my world off kilter again. Yes I wanted and was asking for help, but I was secretly hoping they would just say I was a silly overly concerned mother and he was totally normal. Such conflicting feelings.
One thing that she put down was that he has “Less strength and stamina due to his small size for his age”. I may be more sensitive to this comment because of his IUGR but it’s like a punch to the gut. My perspective is that he’s doing AMAZING for where we started from. It’s hard to see a professionals opinion on it.
We started OT twice a week two months ago and the progress has been amazing. They said he should respond really quickly because cognitively he is doing great and he’s already been able to cope with some things on his own because of his great verbal skills. (I was really proud when he was able to tell her “I’m scared” during the eval, but that’s how he gets out of having to do those things! lol He has never said that to me before but he knows that I know and won’t push him). And he has done well. There are still challenges ahead but he has been more independent, calm, not getting upset as easily. He’s able to try more physical things that are a challenge for him. And actually he hasn’t thrown himself on the floor crying in a long time!
We did brushing/joint compression therapy intensively for 2 weeks, one week off when he was sick and then one more week on. Since then we’ve been doing grounding therapy and babinski therapy on his feet daily. They’ve also added in sit-ups for his very weak abdominal muscles, catching a ball and play that makes him track an item to hit it. They also suggest trying other things in his sensory diet at home so I made a weighted blanket. We need to work on doing more things at home but there is only so much time in a day! Daycare has been great in adding in activities OT suggests too.
Therapy could last 9-12 months or longer but he’s made great progress in two months already. I’m so happy I took him for an evaluation. Thanks to mom instincts, he’s a much happier kid these days. If you are on the fence about getting something checked out for your child, it never hurts to check. Better safe than sorry or regretting it later.
Here’s a few more recent photos since I haven’t updated the blog in FOREVER and as always, Thanks for reading!