We have a diagnosis - Dyspraxia. Come tell me everything that helps :)

[PrinceRogersNelson]

My lovely DD who is 4.10 and started school last week was diagnosed yesterday with dyspraxia and verbal dyspraxia. The diagnosis was made at the Portland hospital and was therefore a private diagnosis after I lost faith with the NHS paediatrican when he started talking about ADD.

We have applied for a statement and the panel meets next week to decide whether to assess or not. The school have asked for 1:1 support, SALT and OT. We have no idea if we will get any of this obviously.

I was just wondering if there are others out there with the same diagnosis. What can I expect in the future? Is there anyhting that you've done which has especially helped? Any top tips?

TIA

My son has a non formal diagnosis of dyspraxia. I have just applied for satatory assessment without the school backing. I see his pead again next month and will ask why his diagnosis was not put down in the report. I get the feeling they dont like the labels and want to concentrate on symptoms ( but not treating them either lol!) How much did your private dx cost?

I have known for a long time it was this. Well it's what fits her symptoms, but I knew I was going to get nowhere with NHS.

The private appointment was £365. She looked at all the reports I had and asked me questions and took a quick look at DD and said that she was happy to diagnose.

I think the problem with labels is that they then have to do soemthing with them, i.e. offer help

Why do school not back you? I just don't get it. School are thankfully on our side and have fully backed our statement request. How old is your DS?

My son is six next month. School said he will never get a diagnosis and I think sometimes that I'm just frustrated that my child is stupid as I have a degree. I'm trying to apply my standards on him. The reality is that he is really not ok in so many areas and there is a real underlying reason for that. Ds is a shy polite boy with sen who looks very adorable. Then have only so much money and need to concentrate on the disruptive kids I guess. I don't know, just my feelings from what been said so far. My sons major problem is his speech and word finding, understanding of language. The rest you can't really see at first. He has SPd from poor signals from body to brain due to hypermobilty hypotonia.

What are your dd symptoms?

My DD has fine and gross motor skills problems. So she has difficulty walking up and down stairs, cannot jump or hop and finds climbing difficult.
She cannot yet use scissors and cannot draw or write.
She has problems concentrating and processing information.
She has SALT difficulties. She is difficult to understand and has trouble finding words that she wants to use. Her understanding is quite good, but her speech not so much.

You need the input of an OT, your gp could refer if school unsuccessful. tbh advice really depends on how it presents

Your daughter sounds exactly like mine but his motor skill issues aren't very viable as he would never climb, use a bike, scooter etc. also his understanding isn't that good

DS1 is 13 now, his school (who I now realise are excellent and certainly unusual reading on here) insisted on sending him to a paed when he was around 7 or 8 and he had a very thorough (2+ hours) assesment with an OT. He was diagnosed with dyspraxia and this made such an amazing difference to his life, I have no idea why people say they hate 'labels'.

Things we have found out; he may initially have trouble with skills that require coordination but if he is encouraged and sticks at it he can work around things and be just as good, if not better than his peers. There are workarounds to help with concentration, in primary school he had a weighted lap blanket and a bobbly slanted seat (helped his body realise where it was in space so he didn't need to fidget to give his brain the signal). Schools can teach in different ways and when he was taught in a very visual way he learnt really well. A good OT will be the answer to a lot of your problems.

Stay strong and have hope, my 'failing' 7 year old, who had problems with discipline and failed miserably every test he took is now a model year 9 pupil in the top sets for everything (apart from French, he's hopeless at French!) and is a lovely kind boy with lots of friends who are similar to him.

DS2 (4) has dyspraxia. No trouble with diagnosis as he was premature with brain bleeds/hydrocephalus and a VP shunt so I never have trouble with docs/ paeds. I start every conversation with: given the circumstances of his birth...

He can't climb stairs properly, hop, jump out of a car etc. All the things you have said about your DD. He has been going to OT every week for six months. I have seen an enormous difference in him. It's as if he needs to be taught the movements, like stairs, that come naturally to others, but once he can do it, it sticks. Big difference in way he plays on playground equipment.

I'm hoping that he is catching up physically rather than falling behind because we have an early 'label'.

One of my ds's has dyspraxia.

I've found that many teachers don't really understand what dyspraxia is and how it affects children because it's so invisible...particularly processing and proprioception difficulties. But most of ds's teachers have been willing to listen to how it affects my ds and have been happy to make adjustments if they know what's needed.

My advice would be to spell out what support your child needs to school and don't assume anything!

Ds is 12, dyspraxia, add, aspergers. He can't and won't try to ride a bike, he can't climb walls, he is finding it very difficult to learn how to swim, he can't use a scooter, play football, or run very well, he can't wash himself properly, there are all sorts of things he can't do. He will improve in some areas and others he won't. In school he has trouble with comprehension, copying from board to paper and understanding some maths problems. He has had OT SALT social interaction groups, and a few others.

On the plus side his grasp of the English language is amazing, he is in the school choir, he is very well behaved, slowly but surely gathering a few friends, he is quite pragmatic, he loves numbers and he has come on so well that I find it hard to imagine how bad he was years ago and how worried I was. He is a fantastic chap.

Focus on the positives when you can, there will be many of them in the years to come and they will outweigh the negatives

Thanks everyone.
She is amazing and seems to be coping with school. She has trouble sitting at carpet time, but they have a weighted blanket for her which helps. School have been amazing I have to say. Do what they can to help and talk and listen to me.

Eyeofthestorm - what you say about your DS needing to be taught everything makes such sense. DD needs to be shown how to do things that most kids seem to absorb, but once you show her and she gets it she is pretty good.

DD has had some OT support already and it really made a difference. I hope we can get some more or else I will need to try and get some support outside school.

ds3 had Fizzy on his statement. You might want to ask if there is something similar in your area that you could incorporate into your dd's statement if/when she gets it.

Thanks eatyourveg that is very useful. I spoke to the SENCO this morning and she asked that I print some information off for them so they can get a better understanding.

Ds has ASD is statemented and clearly has multiple other overlapping difficulties and dyspraxia and dyslexia have long been suspected, (but it's taken seven years and failure to make significent progress to reach independance, to get him to the top of the waiting list over dyspraxia, and we don't diagnose dyslexia here at all)

You were right to go private, (if it was affordable) seven years ago the OT saw ds for the first time despite serious deficit's in gross and fine motor skills being raised by teacher in yr 1 and problematic ever year through school.

At that investigation I was told he had very poor core strength and as he's hypermobile to take up swimming and carry on encouraging his fine motor skills. Next month he finally see's them again and I'm praying for an actual diagnosis of dyspaxia alongside the ASD to try and access help.

I don't know how good this program is or isn't (and if anyone does, please comment) but I've come across it in the search:
www.dore.co.uk/programme/

Would people recommend private dx? Not sure if I need this as me and health professionals all agree but no one wants to put it in writing. I understand the logic as is symptom lead, not diagnosis lead

I can only say that symptom lead is a very good approach to all difficulties, until you're refused much needed services or funding for something because they need a specific diagnosis to qualify for it/access a funding pot. (This may be more of an older dc's problem, or how funding in this area works, I don't know)

I agree that here issues are symptom lead. But I was told that SALT would only see statemented children from now on. DD does not have a statement (yet we have just applied) and I thought our case would be stronger with a diagnosis.
We also decided to get a private diagnosis as the NHS were giving her inappropriate and pointless referrals and I wanted that to stop.

It doesn't sit easily with me. I feel a bit like it's not real as its not from the NHS although I do believe it is the correct diagnosis for her.

Thanks. My sons salt has stopped as he has not statement as well. Pita! Mind you it was as good as useless but it gave the sch

Sorry posted too soon!

Gave the school focus for more directed help

I've got dyspraxia . I was diagnosed at 19 and it made a huge difference to my life. The thing that helped me most was having things written on coloured paper. I found it a lot easier to read than white paper.