Told DD has Sensory Integration Disorder

[bear73]

Hi

I posted a couple of weeks back on here about my dd who is nearly 4 and we finally have a verdict.

We paid to take her to a very good OT who runs an OT clinic just for children. She was able to offer a full 1 1/2 hours assessment and it was really helpful.

She tested loads of things, her gross and fine motor skills, balance, sensory perception, body perception etc. It was very clear that my dd struggled with a few things.

At the end of the session she told us that dd was what they call under-responsive or hyposensitive. This explains why she can be so annoying touching and leaning on you all the time as she is craving touch and pressure. Explains a lot of the behaviour at nursery where she has been annoying the kids, sitting too close, not doing actions/joining in group stuff.

It also went a long way to explain why she was such a difficult baby who hated being put down and why she didn't jump until way over age 3. The full report from the OT will take 2-3 weeks as she is so busy. I spoke to dd nursery on Monday morning and the teacher wasn't sure what would happen now as she had never heard of it and seemed concerned that we had done all this by ourselves, i.e. no GP referral or anything.

She said she would read through the info I gave her and pass on to the head at the school. I have a GP appointment tomorrow but not sure how to approach it as I seem to have done all the research and found an OT for her diagnosis myself. Nursery teacher seemed to think I would still have to go through the process of getting her assessed under the NHS even with the full report from the OT - is this normal?

I paid a lot of money to get her seen quickly by the best most qualified person. I thought that was in her best interests as she was having so many issues at nursery.

This OT we saw was over an hours drive from us and I was hoping to try and get some OT for her nearer home.

Would be interested to hear from anyone else with a child with Sensory processing problems, particularly under responsive. Are there things that you have found really helped? How was the nursery/school when you told them? Did they help?

Thanks and sorry for the long post.

bear
x

[Saker]

Hi

My Ds2 has a lot of motor and co-ordination difficulties as well as communication and speech and language problems. It has been debated whether he is autistic but he doesn't have a formal diagnosis. He goes to a special needs unit attached to a mainstream school and they and we were getting frustrated that his motor problems were not being addressed so we have recently also had him assessed privately by an OT. He has a number of sensory integration type problems and tends to be under-responsive also. He often lies on the floor to get a good body awareness and loves to be squeezed and massaged. Quite often he sleeps with his head pressed up into the corner of the bed and wall.

We are only just starting to get ideas about therapies and approaches to use. Books I have found useful in the past is the Out of Sync child and the Out of sync child has fun. They suggest things like wrapping him up in a duvet for pressure, squeezes and massages. My Ds2 also loves hot water and jacuzzi type things - again I think it helps him "feel" his body IYSWIM. You can get stuff like weighted blankets. Ds2 likes to get his fingers into everything, loves mud and puddles, sand and water - generally seeks out that sort of sensation so we try and do stuff like playdough, foam and letting him mess about in mud and water .

If you want to get help through the LEA and support at school you will need to get assessments from the educational pyschologist, NHS OT etc - they won't always take a private report especially without the agreement of non-private professionals.

Out of interest which OT did you see - ours was in Yorkshire (while we were on holiday - we live a long way from Yorkshire). There is a list of independent OTs - OTIP although there are not many who specialise in this type of therapy.

[bear73]

Hi

Thanks for the reply. It seems I might have a struggle on my hands as I don't think sensory integration is that widely known. I really hope my GP is understanding and takes me and the assessment we've had done seriously.

We went to a clinic called The Sensory Smart Child based in Walton on Thames Surrey. She was great and she is a specialist in childrens OT and has been running the clinic for 4 years. I was very impressed with her. It's a long way for us to go on a weekly basis for OT but we will if that's best for dd. I just want help through the school and stuff aswell so hope my GP is Ok with me tomorrow. I am a bit worried that she might just laugh me out of the surgery but hopefully she will be understanding.

Our OT gave us a Therapressure brush which dd loves. I brush her arms legs and back and she thinks it's great. She also loves water, sand and play doh and always seeks out the messiest thing to do. At the OT she went straight for the swing chair and just wanted to be spun and spun. I saw a site for a new book endorsed by the author of the Out of Sync child. Looks interesting, heres a link.

sensationalkids.org/homepage.html

I'll come back on tomorrow and let you all know how receptive my GP was.

Thanks
bear
x

[Saker]

Good luck tomorrow - do let us know how you get on. Whereabouts in the country are you? I have been recommended an OT near Peterborough which is still a bit of a way from us near Newmarket but is considerbably closer than Yorkshire.

I have just bought this bilibo for my ds2 - as the OT suggested spinning would be good for him although he is nervous of it usually. I haven't tried it for him yet but your dd might like it if she likes to spin.

Ds2 might like the brush - do you know where you can get them from? Do you have to follow a programme?

[Dingle]

Saker, what sort of age would you say this would suit please. Looking to buy a few bits for our Down Syndrome Group Resource Library!

[Saker]

Dingle, do you mean the bilibo or the out of synch child book?

[Saker]

Sorry that was a serious question - the grin looks a bit inane now!

[Dingle]

LOL...the bilibo Saker!

[Saker]

The bilibo is marketed for age 2-7 - in terms of size - a 2-year old could probably sit very easily in but may feel a bit wobbly if they couldn't put their feet down. Ds2 (5) is pretty big for his age and on the chunky side (shall we say ) and he can still fit in so I think a 6-7 year old would probably be able to play with it. The idea is that they can sit in it and spin but also tip it upside down and jump off it or use it imaginatively - some of the pictures had children with dolls in it and although I don't think my Ds1 had seen these I was amused to see he had a "baby Jesus" in there within 15min of seeing it. It is totally smooth surface, no bits or anything that might be dangerous for younger children or children with SN. Ds2 couldn't manage to sit in without help - he has big motor and proprioception problems but I guess that might be true of some children with Down's syndrome also. Hope that helps.

[fubsy]

I like the look of the bilibo - we have a bigger version that is sort of cone shaped in our department which some kids really like, but this looks more child friendly. the thing with SI is that you are supposed to give the child opportunities then see what they choose to do, so something like that would be good.
My dd is also a sensation seeker (in my opinion)and I dont think its that uncoomon - where motor skills are not a difficulty, then children may present as fidgetty or thrill seeking. Think of it as a high threshhold to sensations, perhaps specific ones, so you may need to exaggerate the input in the areas where she is hyposenstive. Have you tried massage? Children who like touch often love this.