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Learning all I can - revmom - 11-10-2011

I am a mom of a wonderful 5 year old boy who is "un-officially" a sensory seeker. He is enormously active to the point of distraction, crashes constantly and has recently developed a habit of making noise with his lips and hands as a way of soothing himself. In most ways he looks totally normal - that is if you can get him to stand still long enough. He loves video games and anything that involves running, jumping, or music. He learns quickly but will have NOTHING to do with fine motor skills that are not involving a video game or computer. He loves his new weighted blanket and sleeps SO much better under it but can't manage to sit still long enough to keep the lap pad we bought for school on his lap.
I say unofficially because we do not have a diagnosis. He was born at 31 weeks with a brain hemmorage among other issues and has been monitored ever since. He started preschool the moment he turned 3. The school has been awesome but has struggled knowing what to do with him.
This summer we sought a private assessment for a fine motor delay and within two sessions of OT were handed a list of sensory diet suggestions. The OT stopped short of recommending a screening, in fact they were oddly unwilling to say "sensory issues" but still treated him for processing issues as they were working with his fine motor delay. THis fall (about the time our insurance stopped covering the OT) our preschool teacher shared her concerns that in two years there has been no significant change in my son's attention span or ability to pay attention in school. Combined with the fact that he absorbs all of the information happening around him while seeming to be paying no attention raised some concerns. When I mentioned sensory issues as opposed to ADHD it was like a lightbulb going on, she said that made so much more sense....
SO, we took all of that info to my pediatrician, who is fantastic and agreed that we are looking at a sensory seeking kid who would benefit from services - but he again stopped short of diagnosing anything. In January we will FINALLY have an appointment with a developmental pediatrician and see what he has to say about all of this.
SO here we are in limbo - we cannot get the school to provide OT until we have something official (they are short staffed and can't get someone out to assess) We can't get in to the doctor sooner, and my insurance will no longer pay for OT.
And that is where we stand, we are in the meantime trying out different things with the help of the preschool. We have weighted materials, we are doing compressions and massage, we are doing heavy work and allowing him to "crash" when he needs to.
All of that being said, I am at a loss as to what to do next. What is the collective wisdom - is there something more we can do on our own?
What about special diet, we have not done anything but add omega-3 at this point. Do we try some more stuff on our own? WHat would you suggest trying first?



RE: Learning all I can - AngelaVA - 11-10-2011

Welcome!!! My daughter is the same age and has a lot in common with your son. A few thoughts on your current situation. First regarding OT, it sounds like you are willing to work with him at home could you afford to private pay for maybe one OT session a month and set it up where the OT gives you stuff to work on that month and then you come back?

Second diets and supplements. Gluten and Casein free diets have a great reputation to be helpful with kids with these issues (many are soy free as well), it has been extremely helpful to us. Artificial Food Dyes and Corn Syrup are also really tough on kids with hyperactivity problems and honestly are bad for everyone so I would eliminate those from his diet for sure, even if you don't want to do a GFCF diet right now. Cod Liver Oil is a good relatively inexpensive omega 3 you just give them 1/2 - 1 t a day mixed with juice - they do make chewies and such but the dose is low and the cost is high. You may want to look into some form of B-12, ideally a nasal spray which you would need a prescription for or if you can't do that (it's very expensive) a sublingual like the B-12 lolipops. Most of the natural treatments for Autism also help kids with SPD so if you are interested in that I would suggest looking for a DAN (Defeat Autism Now) doctor in your area.


RE: Learning all I can - Jaffa - 11-11-2011

Hi rev mum,
I am new to the site also, but welcome, I have a 5 year old boy who sounds just like your son. It's lovely to hear, as i have been told "you are an overanxious mum, how could I be I have 4 other kids. And that people on here understand what you say and some have been there themselves.

I don't have SPD so I find any information valuable. I live in the uk and my sons school are the people who got him diagnosed so I am lucky there.

It's sad that we have had to battle our way to a diagnosis when as parents we knew from the start things are not "alright".

If you just need someone to talk to by all means pm me, I can't give help yet but I understand where you are.