SPD Support Forum

Hi,
I have a 5 year old son who has recently been diagnosed with spd. He also has dwarfism so its a double whammy for us :-)
I am kind of getting frustrated about how his OT is dealing with him. Because of his additional physical problems things are quite difficult. His main problems now seem to be food phobias (he lives on baby milk, bread, yogurts, cheese and crisps). He refuses to even try any other type of food and will sometimes hardly eat anything for days which is VERY worrying.
His other big problem is dealing with situations ; it was his birthday yesterday, he didn't want a party, didn't want cards (although liked pressies once he realised there were nice things hiding underneath the wrapping paper!), didn't want a cake - nobody was allowed to even say happy birthday, let alone sing it. He is like this with a lot of things, can be very rude to people (especially if he feels threatened). Just finding it very hard to deal with my complex little man at the moment and not getting much help from my OT. Any advice would be appreciated. Thanks :-)

Hi Emma

I guess you have to pick your battles... birthdays are a social convention, there's no law that says anyone has to like them. One of my daughters went into a complete heap under the age of 5 about attention at birthdays and meeting new people. She's now very confident and chatty with people at 10, although she'll suddenly get really filthy if she doesn't like the attention she's getting. The important thing is that your son is not made to feel ashamed or embarrassed... small steps, test the waters and give him some control. As he gets older you can have a quiet chat when it's not a threatening time... maybe at the park one day when you're on your own together and having a good time you can talk about how people love birthdays because it gives them a reason to show someone how much they love them... planning for someone he loves who is having a birthday together can be an opportunity for that... I find ways to kind of drip feed ideas into their heads and talking about other people is safer than talking about them. I think being 4-5 is a very sensitive time, they're dealing with a lot of change... it's like the adolescence of early childhood really, they're not babies any more but they're not "big" yet, like a 7 year old is "big".

OTs are great but they aren't necessarily Mums or psychologists!

You and he will get there, don't worry!

Emma- give yourself some time if this is a new OT and a new situation, but don't hesitate to trust your instincts either. I had one experience with an OT who I am sure was great at what she did but she was not great with my son. They just never connected and he became more and more defiant with her. I finally decided it was ok to voice that concern and I was able to request a different OT. His new OT was a much better fit and sessions were much more helpful for both he and I. Trust a mother's instincts- if something is not right, it is not right. I also think that talking things through with your OT to understand why they are doing what they are doing can help as well.

When you say you are not getting help from the OT - can you explain that more? Do you mean she doesn't work well with him, or doesn't understand his issues or that so far you've not seen the results you'd hoped regarding food and behavior? If she is not treating him kindly and respectfully I would find a new OT. If she is working with him in a professional way but you are just not having the results you'd hoped for, I would consider seeking out some additional support , like Floortime or DIR or Play therapy for the behavior and social stuff and a DAN doctor or other naturally minded doctor to help with the food stuff. Most kids with really limited diets like that have nutritional deficiencies and food sensitivities i.e. certain foods are causing intestinal problems which then spirals into other areas of development.

If you go to Gallery up top, then Miscellaneous, you'll see how my older son often spends his birthdays. He likes them, but they can be overwhelming too!



I've been dealing with the food issues with my younger son. It's so hard when they don't eat and you can see all their ribs--we are always worrying as moms. My older son went through the picky eating, but it didn't last as long. Older son is a rule-follower to the T, so if we said there is a 3-bite rule (then later 5-bites) then he would do it. Not so much with younger son (7 years old). He was still losing foods up until very recently. I think he is starting to finally eat more and trying new foods. I've been talking to him about healthy eating and will praise him and reward him for eating new foods/ones he had previously refused.

I do try to have part of the meal be something I know he'll eat, but I continue to have him try new things. It's been between 2-3 years of a downward spiral, but I think (cross my fingers) we are on the upswing now.

What helped me also was knowing from doctor's visits that he was still gaining weight, still growing, still having regular bowel movements, etc. Even though he looked too bony to me, he was growing. It might be even harder to see since your son has dwarfism. But hopefully there is still growth, even if it might be a little less and slower than other kids.