Luckily, this person had already confirmed this for me, but she really makes me feel so much better. Just to back up a little, after two visits to a pediatric developmental specialist and her team of OTs and STs, Jaemin was determined not to be autistic (no surprise) and eventually she also said he was not sensory integration disorder either. Funny after just a 20 minute visit with him and her mouth running while I was trying to explain his symptoms. Her trying to compare him to her 3 year old and me trying to voice my concern as a very experienced mother that something was NOT quite right. I explained his constant flapping and need for movement. I explained how he would never allow footy pajamas or blankets on him. I explained how out of sorts he got in certain social surroundings and how he does not play like typical 3 year olds. He doesn't play with toys, or rarely.
After that visit I was completely beat to the ground...the last visit with her and the clinic in October. But, I decided to move forward with getting him evaluated at school since he was then 3 and could possible qualify by the school's standards....for something.....anything. Anything to help him move forward and be emotionally and socially developed. After 2 months of forms, tests, questionnaires and observations by OT and ST he was found to have dramatic speech delay in all areas. She said it was hard to qualify for speech at 3, but because he was having an issue in every area of speech he qualified. YAY! He was found to have sensory integration disorder by our local special learning center's evaluation, but you cannot qualify for OT on just that. You have to have fine and gross motor delays. He has some fine, but definitely not gross and definitely not enough to qualify for OT. But, in the area of sensory they had concerns in 9 out of 15 areas. That's a LOT!
Because of that and the OT's personal observation of Jaemin she offered to still help us. We can't come in for therapy, but she used to work for the special learning center and was willing to give us ideas. She gave me a brush and taught me how to do brushing therapy. She told us to try compressions and wheel barrel walks. The wheel barrel walks didn't go over well because he couldn't support himself, so we taught him to do push ups. Turns out that was the right thing to do.
Fast forward 4 months and I felt down again. His flapping is getting worse, so I called to ask her for more info. I told her how he suddenly wants blankets on him. She said that actually means his senses are changing and possibly calming down and what we're doing IS working. She said the reason he is probably flapping more at home is because he rarely does it at both grandma's houses during the day. She said he's managing to control it all day and when he gets home he feels safe and it becomes an outlet. So he's totaling dumping the day's stimuli. She was nice enough to offer a weighted blanket to try so we don't have to buy without knowing if it will work, but I declined for now since his multilevel blankets seem to be helping. She said it can't be more than 10% of his body weight.
She gave me a whole list of exercises we can do with him through the day and both grandmas can do as well. Using a different one each day will make them not feel like punishment which is where we've kind of landed with minimal ideas in the beginning. I'm anxious to start trying all of them and seeing some progress. I'm happy to find out we've actually made progress.
I told her I was worried about him getting overloaded on the plane to Korea and having no physical outlet. She told me to start using a social story now, explaining Korea and what he can do on a plane versus can't do. She said it may tame some of his behaviors down. We're also going to try a lap weight and make a shoulder weight for him. Try that at home and hopefully, then, it will work on the plane. May have to try it on vacation and if it works on the drive then hopefully, it will also work on the plane. She's going to send me links and other ideas for the plane if she thinks of them. As you can tell I'm pretty much planning on us going to Korea. Even if we don't get it through Make a Wish, we will have to find a way to pay for it. I think it will be very good and therapeutic for all of us.
The OT also told me there's a chance he will outgrow enough by the time he goes to school in 2 1/2 years to integrate fine. If he doesn't they know by the time he's 5 and he'll qualify for and IEP for OT through the school and then he'll get extra help in school. She assured me that if he still has problems and flaps or anything like that to deal with it, in school, he will not be sent to the office or punished and we will work together to help him. That relieved a lot of fears for me.
So, now that I have my arsenal list of things to do with him, I have one for daycare too, I feel armed and ready to take on sensory disorder. Now, I just need to quit worrying about what others think. I know when he throws one of his over stimulated tantrums people either think we're bad parents or he's a bad kid and I know it's neither and they don't know he really does have disorder that he can't control and I need to ignore it all and just love him.
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