DS diagnosed with Dyspraxia (we think!!)

[MetalMummy]

I know that seems a bit strange but I will explain why we are not sure of the exact diagnosis.
DS2 is 4 and for the last 18mths I have been trying to get SALT for him because I knew something wasn't right with his speech. He was assessed in January and the SALT said that he has severe speech problems but that she also wanted him referred to a paediatrician because she thought there may be problems with his coordination. On Thursday he saw the Paediatrician who did loads of tests and then told us that he has loose joints and problems with coordination and fine motor skills and he will need years of occupational therapy. He spoke like this for at least 15mins and then asked if we had any question, we said no, we were just pleased that we knew what was wrong and that we could now get DS the help he needed. We also mentioned that we had thought that it could have been Dyspraxia and the DR said "well it is Dyspraxia but I don't like to label a child". What's that supposed to mean?
I'm not sure what to do now, DS is in Nursery (attached to the school) what do I need to do with regards to the school? He's on the waiting list for occupational therapy so goodness knows how long a wait he'll have for that, but does that mean that nothing can be done regarding the school until he starts OT.
Sorry, I know this is long but any advice will be greatly appreciated.

Sounds a bit like ds(no SALT thoguh) . He's 10 without a formal diagnosis but gets sporadic OT for motor coordination problems, sequencing, hypermobile and/or low muscle tone (depending who you believe),including lack of core stability.

Ds2 has dyspraxia but no diagnosis also speech and language problems, autistic tendencies. Try to get OT as soon as you can - I really wish we had got OT earlier with Ds2. If the waiting list is long and you can afford to go privately I would recommend at least getting a proper OT assessment done which might help you to access and show the need for other help.

One of the nursery teachers did say that her son has dyspraxia and that the hospital was useless, I think she did pay privately for OT for him. I think I need to speak to our GP and find out exactly what the peadiatrician has put in DSs records. The nursery teacher did say that if we speak to the school nurse she may be able to speed up an OT assessment. Do I need to speak to the SENCO at school or is that something that's not needed or best left until after he has an OT assessment?

I would speak to the school and ask what help they can provide and generally open the channels of communication. The sooner they are aware of (potential) problems the better. Regardless of whether he has a diagnosis they ought to be putting measures in place to help him.

I think if you google OTIP you should be able to get a directory of OTs. I know of a good place in Yorkshire if you are in that region. It is good if you can get someone specialising in paedriatic OT.

We're in Stoke on Trent.

Therapy in Praxis is the place in Yorks who would assess you and see you for therapy but obviously that would be a lot of travelling. It might be worth it for a one off report - we went there once while we were on holiday in Yorks even though we live in East Cambs. She produced a very detailed report which helped us get a statement of educational need, OT at school etc.

Here is the OTIP directory which might help you to find someone more local if you did decide to go privately. Have you any indication how long the NHS waiting list is?

Also you don't mention if you have concerns , if there are already difficulties at preschool etc? I guess some of this will depend on how urgent you think your Ds2's need is and whether you think he would cope at school. Would you consider a special unit, special school or do you not feel that is not appropriate? It is worth considering all the options as early as possible.

There ought to be someone to liase with the school for you - round here there is a preschool person who helps with funding / support for preschool kids and forms a link with the future school. She also helped with Statement Applications etc.

At the moment we are still trying to take it in. We suspected dyspraxia but now it's confirmed (kind of) it seems more real. There are no difficulties at nursery, the staff there are fantastic and really backed me when it came to getting the SALT assessment. DS had already been assessed in Dec 2006 and SALT said that he had severe speech problems and would be an ideal candidate for the I Can Nursery which is a specialist speech and language unit which foundation stage children can attend 2 days a week. We were told that he had to go on the waiting list for SALT but that he would start the I Can Nursery in Sept 2007. In June 2007 his appointment finally came through for SALT, she assessed him again and said that he had improved and was now within normal parameters. She discharged him and of course he lost the place at the I Can Nursery and received no SALT at all. In Sept 2007 he started Nursery by Dec 2007 his nursery teacher agreed with us that he his speech was very delayed so I got back in touch with SALT. In January he was assessed by a different SALT who apologised and said he never should have been discharged, said he does have severe speech problems and that he should have gone to the I Can Nursery. I was so pissed off, all that time wasted!! . He still had to go back on the waiting list for SALT which he still hasn't had yet (we have just received an appointment for Tuesday though). She was the one who sent a letter to our GP requesting that DS be referred to a peadiatrician because of his coordination though so that was a big help, our GPs diagnosis was that DS was knock kneed
I really want to try and get the help he needs in place before he starts Reception in September, I'm not sure if this is pushing it a bit though because I'm just not sure how long it takes. I know his school has been praised in Ofsted Reports about it's provisions for Special Needs so that's a good sign.

That's so rubbish about the SALT and probably getting in that nursery would have helped your access to other provision. It makes me so cross to hear things like that . That sort of thing is partly why I am saying push for stuff asap but sorry, I know it's a shock suddenly getting a diagnosis/official confirmation even when you suspect and I wasn't meaning to hassle you into action - you do need time to take things in.

It's good that the school is sounding clued up on SN, I definitely think talking to them would be useful. It can take a while to get help in place but if you talk to the school at least they ought to be able to set the ball rolling.

It might be worth finding out about language units and other provision for special needs. It may also be worth starting the process to try and get a statement as that takes some months usually. You can apply yourself. It may be that your Ds won't need this level of help but it at least draws attention to his needs.

Has the paed referred you for any other help than OT? Did the paed give you any diagnosis for his speech problems?

To help with the fine motor control for handwriting skills, I was recomended 'Write from the start' when ds was diagnosed.

You can buy it on Amazon, and it is dead easy to do at home. It was very helpful for ds

The paed didn't give a diagnosis for his speech but I know when the SALT asked for DS2 to be referred she was considering verbal dyspraxia as a diagnosis. DH has a friend whose wife works in a language unit which takes children from year 1, she says that a lot of the children there do have dyspraxia or ASD as well as speech and language problems. That unit also takes children 2 days a week. I haven't spoken to her recently but I think I may ring her today and see what advice she can give. At the moment he has only been referred for OT and the paed also said he can't see a need to see DS again in the immediate future unless the OT thinks it's necessary.
I've just ordered some of the write from the start books, they will be ideal for DS1 too who is in reception.
Thank you all for your advice, I think I'm going to sit down and make a list of people (professionals) to talk to, it looks like I'm going to have to keep pushing to get him the help he needs. It's sad really, 25 years ago my Mum had to sit outside the education office and refuse to move before they would assess my brother who had been labelled as a lazy, disruptive child. He wasn't he had dyslexia and once he changed schools (went to a special school) he was like a different child. I had hoped that in those 25yrs things would change and it would be easier to get help but maybe not.

Good luck. I hope you get things sorted out.

Things seem to be progressing a bit now. DS saw SALT for his first session today and she has now given a definite diagnosis of Verbal Dyspraxia for his speech problems. She says she will coordinate with the Senco at school to make sure that the school do some speech therapy with him too. He has been put on School Action Plus, and I spoke to the school nurse today who says the waiting list for OT is about 12 weeks which isn't too bad.

Good, glad things are starting to fall into place.