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Been told my DS likely has sensory processing disorder. I'm in the dark what does it mean?

(5 Posts)
CHERRYBL0SS0M Sun 12-Jul-15 20:30:31


My son has a sensory assessment on Friday and I was told he's definitely presenting with sensory issues. I admit that after 2 hours in the sensory room, with a lovely kind assessor, I came out of there a bit dazed. I'm totally out at sea and no idea what this means for him and us and how to move forward.
The sensory side of things has all happened rather quickly and I'm totally unprepared. I've no idea on the right terminology so please don't be offended if I say the wrong thing.
I'm sorry if this ends up too long, I don't know what is relevant and what isn't with this so will explain as fully as I can.

My boy has sleep apnea and has been on a CPAP machine since last autumn, and has recently had another op which has discovered the cause - flattening of lower airways, so this has been at the forefront of our minds. There have been questions about his behaviour for a while, and medical teams were putting it down to his poor sleep so we waited for the CPAP to be sorted.
Nothing in his behaviour changed so with the advice from his nursery we contacted the health visitor. It has taken ages for anything to really happen. Initially they wanted him assessed to see if he was on the autistic spectrum but the referral to paediatrician was refused as he is still pre-school and they want to wait to see what happens with school. (!!?) another member of the health visitor team got involved and said that there is something going on so referred for sensory assessment, this had to go to a panel ( called Portage service- I don't know if this is a local or national thing!) and now has to be rushed because it's coming to end of term and he won't be under these teams when he starts school in September.
During the assessment, he was like a bull in a china shop, moving from one thing to another, crashing about and very excitable. Everything that she did to calm failed, but she is sure he has spd. He hardly feels pain, he's rough with everything and everyone, she said he's constantly looking for sensory input. He has to run everywhere and shopping is a nightmare fingers on everything, He spins a lot and if I can get him to walk with me he's throwing his arms about, or has to jump. There are other things we discussed but my minds gone blank!

She has given us some joint compression exercises we have to do with him every 2 hrs, but other than that it seems that is it as far as sensory is concerned, because she finishes work for the summer soon and come September he's not under portage any more. She said she will pop into the nursery he attends so show them the compressions and try to explain what's going on with him as they just see him as a naughty / difficult child. But he's so funny and clever with an amazing memory, understands concepts so easily. He is very tactical and wants hugs and kisses all the time - but kisses from him can hurt as he is so forceful sometimes. He understands emotions and if anyone is upset he's the first one there to try and calm them down.

So I don't know what happens next...
Is it something that children grow out of or do we just teach them how to cope and as they get older and enter adulthood they have their own way of getting the input they need (I mean a grown man at work can hardly have someone giving them compressions or go bounce on a trampoline for 5 mins)

Family always look to me for answers and this time I've got nothing. I've tried reading information and websites but I'm just getting confused and it's getting me down I've been in tears because I just don't understand or what to do. Husband has been working nights so not even been able to go through it in detail with him yet so feeling quite alone.

The assessor said she is going to do another referral to the paediatrician because none of the normal calming techniques work and he was as active as when he arrived, and that can mean something else is going on. She wouldn't elaborate. Other than to say that he is what they call a mixed bag.

Thank you if you made it to the end of this, anyone with any insight or advice for next steps? I'd appreciate it so much.

CHERRYBL0SS0M Sun 12-Jul-15 20:31:22

Wow! That is epic. Sorry!

PolterGoose Sun 12-Jul-15 20:55:50

Message withdrawn at poster's request.

speechmum Mon 13-Jul-15 18:39:29

I know this company can put you in touch with occupatinal therapists trained in SPD

Violet22 Tue 14-Jul-15 23:24:59

I have just read the out of sync child by Carol Stock. Kranowitz. Found it very helpful. She also has the out of sync child has fun, which has activities in to help. Has your child seen an occupational therapist? Could you ask your doctor/ assessor to refer him to one.

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