is there any support out there?

[MrsStark1]

My dd has been diagnosed with spd and is undergoing further assessments, is there any support out there or what services (if any) can we access? I've been left to deal with it alone and just so unsure of everything.

[Ineedmorepatience]

Some local authorities fund sensory intergration therapy via OT's who will also help you to set up a sensory diet for home and school.

Many dont though and many people have to pay for this therapy. If you are one of the unlucky ones I would recommend asking specific questions on here as there are some very knowledgable people around.

Put a call out to poltergoose she has a brilliant list of books that would help you.

Sorry you are not getting any help

[Ineedmorepatience]

Ha cross posted and polter beat me to it

[MrsStark1]

Hi PolterGoose,

I am not sure really, I have no-one to talk to in rl or anyone who understands. I don't know if there is any support with strategies, advice or ways to make life easier etc. Or any other support I don't know about. There are so many issues at the minute.

I was going to try to apply for DLA (was not sure how successful it would be). Also I am not sure who can sign form for me as I am waiting for paediatrician to get back to me on the next steps.

[MrsStark1]

Thanks ineedmorepatience,

At the minute we have a private ot while I wait to find out how to access community ot. Private ot was going to do a home and school programme so will sort that out but school are not willing to implement it at present. So would solely be at home.

[Ineedmorepatience]

If you apply for DLA make sure you use the cerebra guide, it will help you to break down all the extra stuff that you do.

Not very helpful of the school!!

[Ineedmorepatience]

Is there an Autism support group nr to you? Many children with autism also have SPD and you might be welcome to join. Or someone attending an autism group might be able to help you.

[MrsStark1]

Ok will look at the guide.

I know at the min school are not entirely helpful and I don't feel it's going well.

I have emailed one group I know of will try others, as she has not got an autism diagnosis it wasn't something I had thought of.

It's hard with the waiting as well. I am impatient anyway and not knowing if there is a second condition or if it is just the one is difficult. I race to the letterbox everyday in hope the letter is here, today is not that day and the call back I have been waiting for about a week now has not happened yet.

[Ineedmorepatience]

Some groups may specify that a child has a dx of autism but I cant imagine why, at the end of the day its about parents helping parents and that is really the only support out there.

The groups I attend have never turned a parent away!

I would chase that phone call with an email if you can or a phone call if not.

If you can use email or written communication, always do, it creates a papertrail.

[Tambabaubles]

Hi Mrs Stark, have you tried this organisation? They have a forum on their website. It might be worth checking them out.

www.sensoryintegration.org.uk

The Out-of-Sync Child is a very good book for SPD.

[Jacksterbear]

Hi MrsStark. This board is a great source of support for SPD! I had barely heard of it when my DS was dxed with it 18mths ago but have read up a lot since. Agree that "The out of sync child" is a good place to start.

Re groups, I was accepted into my local ASD support group when my DS' dxes were SPD and anxiety (he later got ASD-pda dx).

Re school, will they agree to meet with the OT so OT can explain some of the difficulties? Will they agree to your DD having some sensory equipment in school to use eg wobble cushion or whatever OT recommends? Or to her having movement breaks etc? What I mean is, if they're not interested because they say they have no resources, there is stuff they can do that won't cost them any time or money, iyswim.