DS (nearly!) been diagnosed with dyspraxia - what now?

[nikki1978]

DS (7) has had issues since he started school mainly social and communication but over time it was becoming more and more apparent that there were physical problems and he has been becoming more and more withdrawn at school.

We have struggled to get anywhere for a long time as the school said he wasn't bad enough for any kind of referral and the OT and developmental paediatrician he saw 2 years ago after we pushed the GP to help weren't much good as just gave a couple of exercises to do.

Anyway at end of year 2 after he spent the year barely speaking to his teacher and his handwriting was still looking like that of a 5 year old we decided to go private for an assessment as his sensory issues were becoming much more obvious to us so we thought maybe sensory processing disorder.

The assessment brought up lots of sensory issues (everything but visual being affected) but the therapist says he has dyspraxia (sensory based). She said she can't officially diagnose him as she needs to do that within sessions (we are on the waiting list) or we can pay her to do the dyspraxia assessment. She said she will be able to diagnose it definitely.

We also saw the NHS SALT for a progress check (he has weekly sessions at school with their SALT who is very good) and she picked up verbal dyspraxia and has referred him to CAMHS and in that referral says he needs to see a developmental paed and an educational pyschologist. The CAMHS waiting list is 2 years long though!

We also asked the GP to refer us to see the dev paed again (now things have progressed and because we want to cover all our bases if the school need a diagnosis through the NHS not private) which he did but in his referral he said he didn't feel there were physical issues (not sure how he came to that conclusion ) so they refused to refer unless the school do so.

So what happens now? We have lots of exercises to do with him at home while we are waiting but I feel like I need to get the school on side. Mainly to help deal with his communication skills but especially his appalling handwriting (even he can't understand what it says!).

Thus far the school have said he isn't bad enough academically for them to do anything although he is vaguely on their radar. I think having this (near) diagnosis may help push them into action. Am thinking of getting a meeting with the SENCO but would it be best to go through the teacher?

If anyone else who has a child with dyspraxia has any advice on this or in general about what helps and what I need to be doing it would be appreciated! I feel a bit out of my depth at the moment!

Thanks :)

P.S. Sorry it is so long

Bump

My sons school suggested he has dyspraxia. The OT waiting list is 12 - 18 months long if the school refer him to their service.

We paid for a private assesment. The OT couldn't make an official diagnosis but the school, SaLT and Ed Pysch are happy to use the private report in recommendations.

We are seeing a pead this morning who can hopefully give us an NHS diagnosis.

Certainly do speak to the SENCO. It's hard to know how to help a child with dyspraxia as it affects children differently. Also to help with his hand writing look at 'write from the start', it's something you can do at home and many people find it helpful.

Thanks ladies. I think the main issues at school are the handwriting (which we are working on at home as much as we can but he hates it and finds it frustrating) and the fact that he struggles to make friends and communicate with the teachers and says he hates school and makes very little effort while there unless something interests him and then he really gets into it.

So I need to work out what I want the school to do which is hard as we don't really know what the issue is - is he frustrated/bored etc etc as we can't get an answer out of him!

We will continue to work with him outside of school to see if it helps.

I feel like the school only deal with the kids who are disruptive or who are badly failing academically. He doesn't misbehave but he is withdrawn and although he is only behind in a couple of areas it is not bad enough for them to get the ed psych involved (hopefully now the SALT has said this needs to happen they will change their tune). I just feel like he could do so much better if he would engage with the staff but that just isn't happening and he is slipping through the net.

I second the recommendation of the Write from the Start books. They are much more fun than copying/tracing letters etc. My dd enjoys doing a few pages a day. And the "explanation/theory" part at the beginning of the book is very interesting. There is so much more involved in handwriting than you would think!

I understand how you feel about quiet/withdrawn children being overlooked just because they do not cause trouble. I would definitely book a meeting with the SENCO (is your ds on the SEN register or do the school not see a probelm at all?).

See if his teacher can come along for all or part of that meeting. The teacher and the SENCO both need to be engaging with you.

He is on the SEN register as he has SALT involvement which is mainly for his issues with communication. So he has an IEP and I presume he is on school action plus.

Basically since he started school I have had meeting after meeting with teachers trying to figure out what is wrong/how to help him.

Until the last month everyone seemed a bit 'throw their hands in the air' about his behaviour at school. He says he doesn't want to go and he hates it but never cries just moans. While he is there he does the minimum he can get away with, ignores the teachers when they talk to him most of the time, ignores the other kids apart from a couple and just gets through the day the best he can until home time. He loves to be at home with his sister who he adores playing lego or minecraft or board games. He is like a different child at school.

Over the last 3 years we have had the following issues at school:

Bullying (he didn't seem to care but all the boys teased him - said he was smelly as he was still soiling for the first couple of weeks then not wiping properly and it stuck, found him a bit odd as he is so unsociable and seems to talk about things they aren't interested in, laughed at his messy eating as he eats with his hands when not nagged to use cutlery and his clothes are always twisted from struggling to adjust himself after toilet visits)
Couldn't sit cross legged on the carpet (referred to OT who gave some exercises)
SALT issues (he was already on SALT books when he started school and the school do talk groups with him each week)
Writing (he is hypermobile in his fingers and he either presses to lightly or too hard, slumps with his head in one hand and gives up quickly)
Communicating with teachers - for the first 2 years he talked a lot to the teachers more so than the other kids but last year he barely spoke to them at all
Struggled with memory and organisation - took nearly 2 years to learn most of the kids names in his class, found it hard to work out what to do next in the classroom so they gave him a daily timetable

So I have got all the paperwork and reports together from the last 3 years and am writing a list of things to remember to say. I am going to try and get a meeting with the SENCO as soon as school starts but am thinking if the teacher needs to be involved I should leave it a few weeks as she doesn't know him yet?

That info is all very interesting sugarskully. I just wonder why he never says to me that he finds stuff hard? If I ask him how school was he says he doesn't want to talk about it.

I paid for a private OT assessment.

I also complained to the local MP re NHS waiting times to see an OT and he was seen much quicker.

I also applied for a statement.

My son has dyspraxia. I would advise you if you have the energy to tackle everyone. Do one formal leter. Saying what your summary is. Book a apointment with docs and take it to hand over. You need to see pead to make it nhs formal and ot. Get pushy. Book a meeting with senco. Cc letter to head and corner the teacher after school. Get the senco to apply pressure on the nhs as they can also do this

Use your " you wanted a answer - well here it is. What can be done now" card.