Where to start?

by Edie
(Fulton IL)

My son was 31 weeks premature and had a brain hemorrhage. Today he is healthy and mostly happy having just turned 5. But we are struggling with school we know that he is sensory seeking, all you need to do is meet him but because so much of his issues and behavior seem to be able to be blamed on being "hyper" we are struggling to get a diagnosis AND treatment.

We spent the summer in OT for a fine motor delay but couldn't get them to commit to anything further than suggesting we try a sensory diet and giving us suggestions. We have seen his pediatrician who often works with preemies who agrees that there are issues and has been willing to send us to a developmental ped. We are awaiting that appointment in January. In the meantime, our insurance will not cover any more OT, and the school won't provide services without a diagnosis or evaluation and he is on the waiting list for an eval.

We want to help him now. Waiting and seeing just isn't enough. Today he loves life, is confident and interacts well with others but I can see it beginning to change, I can see him resisting school and starting to act out. I don't want to just sit and let things happen. Does anyone have a suggestion on what we can do now?

Have you found food allergies to be a part of this, do we try going gluten or dairy free?
To be honest at this point we will take all the help we can get!

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Nov 15, 2011
by: Anonymous

i had to split these comments, i was out of room. :/ at any rate, i wanted to post a couple links to some things that may help or give ideas or direction.

and like i said, i don't know the exact challenges you are facing right now, but maybe something here will help at least until you get to January.


a blog of gluten free recipes. but if you google gluten free blogs, there are several.


this was a supplement we had our son on for a while, it proved helpful for some of his challenges.


this is a great program in helping children learn to identify feelings, emotions, how their bodies are 'running' and give some great ideas on terminology and how to talk about it so kids understand and can more easily express themselves.


an interesting book about yeast and sugar cycle in the body.


this is a popular book by carol kranowitz and she has several different ones that address different issues.


is a social skills program based on superheros.

maybe as you are able to meet in January there will be even more resources available at that time. there is so much out there. there is hope. :) keep fighting for him. help him figure it out, they have to learn boundaries and how to express themselves. :) he's blessed to have you.

good luck. hope something here helps.

Nov 15, 2011
i empathize with you.
by: Anonymous

dear edie,

this sounds very familiar. :) my son has mild spd but is very high on the sensory seeking scale. we have benefited from occupational therapy and some other types of therapy as well. i understand your concerns for your son and applaud you for advocating for him. more often than not, it is not an easy road and it can be frustrating, overwhelming and exhausting.

having traveled a road with some similarities that you have posted here, i would ask a few things? did he just begin school? i'm assuming he's in kindergarten? we found kindergarten to be a huge adjustment and very taxing on our son in many ways. What behaviors specifically are you concerned about? is he hitting? back talking? acting out how? as he is sensory seeking, does he get plenty of exercise every day? we have found a huge improvement in our son's ability to self regulate when he gets out and rides his scooter for an hour or swims or wrestles with his brothers, etc.

if you haven't tried changing his diet, i suggest there is nothing to lose by trying it. my son has had some food sensitivities since he was a baby, still drinks rice milk and we had him on gluten free diet for several months, and we absolutely have to watch his sugar intake (yeast overgrowth can be common in kids with spd and autism) and have actually begun using alternative sweetners and sugar-like products like stevia. we noticed a difference for sure and it was at that point we pulled him off everything and started re-introducing foods again.

of course he was much younger, but my point being, can't hurt to try it. i know too that many children are sensitive to dyes in foods and chemicals that leech into our foods. possibility?
i fully believe that diet affects every aspect of our health, mental, physical, emotional, etc. all of it! :)

if you try it i would actually suggest not going cold turkey with dairy, gluten, etc. all at once. pull one and or cut WAY back and watch for a couple weeks to see. if you do it all at once and you see improvement you will have a difficult time pinpointing what part actually helped. am i making sense?

to be continued... :)

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