Sad and Frustrated

[Stephenie]

I have posted on here before about my DS. He's 3.5, has SPD, some muscle tone and motor skills issues and possibly some other issues... a lot of times I suspect some form of ASD. He's also extremly bright, verbal, reading at an end of 1st grade kind of level etc. We have hit wall after wall with getting him services and further evaluation and at this point we are stuck working with him on our own and trying our hardest, but not having great luck. 

He does ok (not well... ok) in social situations when we can control them a bit. He goes to a small Sunday school where the teachers understand a bit and have altered the way class works a bit for him. (no songs with clapping etc) He does ok, but has issues with transitions to and from class and has been known to hit when overwhelmed. He does ok if we have a friend over, but I have had friends leave because of his behaviors around their kids. (jumping everywhere, spinning for the whole time they were there without looking out for other kids no matter how hard I try to calm him down...) He often is happy to be around the other kids but does not really play with them. 

Today we went to a birthday party and it was just a mess. It was at a kids' gym. When we got there a gym employee was leading the kids in games. Music was playing. He ran and hid in a climbing cube with his hands over his ears. He eventually came out, but would not play games with the other kids. He had no interest in the games or even the kids when it moved to free play. He cried  several times. He did like the toys (it was really much like the sensory gym at our old OT's office) but he didn't even notice the kids and often stopped, curled up in a ball and covered his ears. It was just so obvious how different he is from the other kids. I knew it might be a bit much for him, but I didn't think it would be as bad and he really wanted to go. I offered him the chance to leave several times, but he didn't want to leave the ball pits and trampolines. 

I don't really have a point to any of this, I am just sad for him and wish I could do more for him right now and wanted to vent to people who understand. 

[Rose-Roget]

  That's really tough, and I understand.  You sound very on top of it, and the support you're giving him this early on will help him lifelong.  Hang in there.

[coyotemist]

Hugs, it is hard.  I wish you luck in getting services, my daughter did much better once she had some OT and we did brushing and compressions.

Have you tried those two things?  They really help and you can do them at home.

http://www.brighttots.com/sensory_integration

Therapeutic body brushing is often used on children (not infants) who overreact to tactile stimulation. A specific non-
scratching surgical brush is used to make firm, brisk movements over most of the body, especially the arms, legs,
hands, back and soles of the feet. A technique of deep joint compression follows the brushing. Usually begun by an
occupational therapist, the technique is taught to parents who need to complete the process for three to five minutes,
six to eight times a day. The time needed for brushing is reduced as the child begins to respond more normally to
touch. In order for this therapy to be effective, the correct brush and technique must be used.

It's not terribly hard to learn, here is a Youtube about it http://www.youtube.com/watch?v=uETDXHrH1io

http://www.bbbautism.com/sensory_integration.htm

We also do the "roll up like a burrito" thing, it helps too.

[Stephenie]

Thanks for the support. It's good to just be able to vent.

Unfortunately, brushing didn't really do much for him. We tried it in the past with no results. It mostly just annoyed him.

[beachcomber]

First of all, big hugs to you, Stephanie. I have often felt the same way about my DD. My heart breaks when I see her struggle and decompensate. She is very sound sensitive and just cannot handle excess noise. We've managed this by giving her noise reduction headphones which help to lower the level of the sound assaulting her sensitive ears and brain. When they decide to do dancing to music at preschool, she puts the headphones on and she can actually participate instead of hiding in the farthest corner of the room. This year there was a boy who had major difficulty transitioning into school and he'd scream. It really affected her so the teacher started putting the headphones on her then. Worked like a charm.

Not sure if this would work for your DS but it might. The headphones can be purchased at any hardware store as they're most commonly used by construction workers, wood workers, road crews, etc.

[Stephenie]

Hmm, not sure if he would keep them on, but it's worth trying out. Thank  you! 

[Rose-Roget]

Therapeutic Listening is also supposed to be good to help with some of the sensitivities.  I'm looking forward to trying it for ds soon.