Can I refuse a diagnosis?

[ReindeerBollocks]

DS has several medical issues and is also hypermobile. He has recently moved school and they were shocked at the level of his handwriting. His new teacher has been unbelievably supportive and has finally agreed that he his hypermobile in his hands/wrists which is causing the poor handwriting. His last school just assumed he had SEN, despite being just as intellectually as capable as his peers.

New teacher would like an assessment to be carried out by tan Occupational Therapist. I initially agreed however after she went through the Referral form, she did raise certain issues such as DS takes a long time to dress, has problems with balance, and co-ordination. I think if he is assessed by the OT they may diagnose dyspraxia. Thing is, while I feel the extra support for his handwriting would be useful I don't feel that a diagnosis of dyspraxia would be helpful at all. He is already struggling with his medical condition as it is and I just don't feel he would cope with it very well. Can we refuse any further testing whilst sorting the issues for hypermobility?

Can you clarify why you think a diagnosis would not be helpful? They are not going to make a diagnosis on a whim and if there are issues there surely it would be in his interests to know about them. What you can do is ask that they don't tell him specifically if that is the worry you have about him being able to accept/understand any diagnosis.

There is nothing that says you have to go through the testing, but I'm not sure how they can help him with best effect if they don't have a clear picture of what they are dealing with.

How old is he? Are you worried about him being labelled? I am worried about this too for my DD (she is undergoing assessments for severe speech delay and communication issues) but I have come to the conclusion that if an official diagnosis of something (ASD is looking like a possibilty) can only be a good thing if it opens doors to additional support, especially as she starts reception as a young 4 yr old in September.

The OT can't actually diagnose dyspraxia can they? When the OT at school was sure one of the children was dyspraxic she referred them to a Paed for an actual diagnosis. They can help him with his difficulties though.
If it comes to a diagnosis they don't need to tell your DS. You can do that when you think the time is right.
I'd take all the help on offer if I were you.

I really think an OT report on all his issues would be helpful.

She doesn't need to write the words 'dyspraxia' on the report (and is actually highly unlikely to without you pushing) - but she should look at all his problems and make recommendations.

My OT said technically she wasn't allowed to dx dyspraxia/DCD, but she put something along the lines of 'has difficulties consistent with DCD', which was what I wanted her to say.

(Her first draft didn't say that)

Okay I'll be really honest, DS is struggling with his medical condition and his school work. He thinks it makes him different and he doesn't want that.

My feelings are those of guilt, that we have concentrated so long on his other issues that this has been diagnosed so late (DS is 8) but also I am scared that another label will decrease any chance of him doing well educationally. I think the hypermobility issues can be worked at, but I don't really think dyspraxia can (well at least fom what I have read). The OT referral means an assessment which I will compy with, but I don't think I'll push for a paeds diagnosis.

DS's father is also extremely upset that DS has further issues, and thinks I'm the one pushing this. I'm not, but I do recognise that he does have certain issues, which have been highlighted by the school. I just wish it would all go away to be honest.

Dyspraxia can be worked on.

Why would another label stop him doing well educationally? He has the same problems whether he has a label or not.....

I suspect the OT won't refer you to a paed without you asking begging for it.

Very common to have dyspraxia alongside hypermobility. An OT could offer support, equipment and exercises to help with both conditions. Not sure why you are so resistant as it may help both you and the teacher with ideas to help. Most of the therapy is disguised as fun games and actvitiies anyway.

Op I hate labels too. But you can refuse to have them on his record. I do think it is worthwhile investigating the underlying causes of his problems. It might even make him feel better to know "i'm not thick, I'm hypermobile."

I refused a dx of SPD and SLI.

I accepted ASD and felt that that was good enough. BUT from a learn everything there is to know about SPD and SLI point if view, not a deny the existence point of view.

I may be wrong, but how can you be certain it's the hypermobility alone that's causing your DS's handwriting problems?

The only reason I ask is that my DS has hypermobility in all his joints, yet he's also dyspraxic and has low muscle tone, so we're not entirely sure exactly what causes his difficulties, the likelihood is that it's a combination of all of them.

His physiotherapist seems to incorporate all of his diagnosis when working with DS; I suspect if she only concentrated on one aspect DS would miss out on essential therapy. It's not a label that bothers me, it's more making sure we've got a correct diagnosis and working with whatever we have.

The physio won't refer DS back to the OT until his core strength has improved anyway; she likened DS to a tree and says that until the trunk is stable, the branches won't improve!

Hi,

If you want assistance for your son but you do not think a diagnosis would be helpful then you must go with that. Do not be put off by professionals who frown upon this approach as it is you who is responsible for your son's future.

My son has a statement without a diagnosis. Worked out perfectly, as at 15, there is no real sign to others that he has special needs. We talk openly about what he used to find very difficult and the diagnosis that is used for this. He says I have a few autistic symptoms, don't I mum.

Point is, in our case, we believe the diagnosis would be too limiting and did not quite fit. We had a range of help and advice that was very useful but we knew our son and what we thought would best protect him.

Our Health centre did tell us that other parents have chosen our route but Health care professionals are in the business of diagnosing so you have to be prepared to go against the grain. We were met with respect - they saw we were doing all we could to help our son.

He is real success story to our choices for him. DO trust your own opinion while being open to others.

I think in order to refuse a dx you have to have resources of a magnitude most of us do not. I would love to remove ds' ASD dx as it lowers expectations but in our LA he would have not got a statement without it, nor DLA.

And any attempt ti get him help through non-private pathways would have resulted in a criticism of my parenting rather than acceptance of ds' needs.

Firstly, let me clarify I am not trying to prevent him from accessing the support and help he needs at all. I have worked with his teacher and have backed her application to the OT.

However DS has serious medical issues which we are already in receipt of HR DLA. We have quite a lot on our plate trying to keep him on par with his friends. It's not that I don't want him to do well educationally, however after reading quite a lot about dyspraxia and it seems really negative towards people doing well through education. DS is bright, and can cope but I know he has certain issues which do need to be investigated. I think DS's father and DS will really struggle with any further 'labels' and if we can access the support without a label that would be more beneficial all round.

I am surprised that you have read of Dyspraxia being negative toward people doing well in education.
A true 'pure' form of dyspraxia (whatever word you want to use) will always be a child who has average to above average IQ.
A child may have dyspractic type issues if they have a low to average IQ but in that case, treatment would focus on having the child's movements be in line with their developmental age.
You havent said what your son's other issue is (none of my business) but would it have an effect on his motor development....it's possible and would be taken into account in assessing movement. I.E his OT report could say that he has movement difficulties in line with his medical issues and he needs x,y,z, support

I didn't know that wannabe, so thank you. I read some very negative things from the dyspraxia foundation, which states that children with dyspraxia tend to do poorly in education and often leave education early.

His medical issues do not affect his handwriting /co-ordination, however it has caused him to have long periods of absence from school, which is why initially I thought this was the problem, as opposed to any physical problems.

His father is being very negative, and has asked if I will stop the assessment as he really doesnt want to have any further issues to deal with. He just wants DS to have fun, and isn't concerned with his education, which has been particularly unhelpful. I am battling against him in getting this assessment which is making the process harder.

Yes you could have read that as without understanding, accomodation and support children with Dyspraxia can have difficulty with education.
That to me would be why having the diagnosis is helpful.
It doesnt change where he should be aiming, but gives him a bit more scaffolding to get there IYKWIM

I understand where you are coming from in many ways. My brother was diagnosed with renal failure and missed loads of school fir appointments and extreme tiredness in his teens. He coukd have had a statement, extra exam time and more but refused all.

He got a transplant but got no qualifications.

But, he is engaged, runs his own business, doing a part time degree and enjoying life. He has to manage his health and his partner has to work a bit harder than most when he has bad days but it can be done iyswim.

Once they get to a certain age I think their opinion and cooperation very much matters. However, have you spoken to him about it?

What do you think will happen in his 20's when he finds out you had chosen not to go ahead with further investigations and the possible support it might bring?

I would have thought that any child that doesn't receive the right support at school will not achieve their potential regardless of dx.
DS1 is both hypermobile and dyspraxic - dyspraxia being the first dx. The OT did a SIPT (Sensory Integration and Praxis Test) and I found both the school and I have found it very informative in finding ways that we can help.
For example it highlighted visual tracking as a severe weakness - and school are now on to this with seating positions, exercises (OT suggested) and simple things like perspex lined sheets in books to keep him to the correct line.
He is of above average intelligence - yr4, working at level 4, towards a 5 in maths. My feeling is if he can do this with the difficulties that he has, if I keep on with finding his specific areas of weakness - and addressing them, he might unlock even more of his potential.

You can get help, advice and support without a diagnosis on the NHS and via your LEA. We did it and other friends did it.

Obviously, your primary concern is to get appropriate help but if a diagnosis is going to shatter family morale or you think it is limiting for the future, as we did, you just be assertive and keep insisting on what you want. The health service is there for you and your son not for the professionals, so you must get the help you need your way, with firm and flexible negotiation skills.

Other parents do succeed with this.

Ds was awarded DLA without any labels in the application form. I think a lot of the labels are nonsense and will probably shift in the not too distant future.
However I do absolutely think you should investigate your ds's specific issues. Knowledge is power after all.
Andisa your comments give me hope - that's what I where I would like to get to with my ds.

I have been doing a lot of thinking and drawing from the experiences of others from this board, over the past twenty four hours. I will go ahead with the assessment and also follow up any further referrals/recommendations from the OT, and if that leads to any dx then so be it.

I do want DS to get the help he needs to be able to complete his schoolwork more easily. God knows I have tried and tried to improve his handwriting with pencil blocks, writing practice etc and nothing has worked, which is why I was asking for assistance in the first place. I have also vowed to be more at ease with his difficulties at dressing/riding bikes some of which I associated with laziness and unco-operation rather than an actual difficulty for him. I do want the best for him, despite my OP not seeming that way. I want him to access the best way for him to learn and develop alongside his friends and I will do anything to accommodate that. Thanks to everyone who has participated, it has helped changed my mind. Our LA are very thorough and seem to strive for the students so I think they will do the best they can for him too.

I apologise if I came across terse or against those with dyspraxia. It's not the case at all, however, I am just going through enormous feelings of guilt that DS hasn't had the correct support so far and probably has been struggling, as well as dealing with everything else that we have to do for him. I will try to convince his father that this is in DS's best interests too. We are currently awaiting counselling to help us deal with his medical condition, so I think that will help with the acceptance of any further diagnosis that DS may have. I guess we are lucky that the school have been great so far, and this will hopefully lead to DS gaining a better education as a result.

When I was asked by a paed if I thought ds might have ASD I was shocked and replied that I didn't want him to have a label.

She replied that I didn't have a choice about HAVING a label, only WHAT label. He was at risk of being labelled naughty, rude, lazy, uncooperative etc.

Does he not see an ot already for the hyper mobility? Things like dressing and self help as well as handwriting etc?

Anyway, it looks as though you have made a sensible decision. It doesn't make sense to feel guilt that he hasn't had the correct support so far etc but refuse dx and services to help him.

Guilt is a waste of time. Move forward.

I have dyspraxia and hypermobility. pre diagnosis I scraped 3 gcse's, intermediate gnvq, advanced gnvq. I got a diagnosis of dyspraxia at 19 and thrived at university with the extra help available. I got a 2.1 in my degree. Glad you are getting him the help now and don't feel guilty.

Just thought I'd update, I have been speaking with our community nurse (for DS's medical needs), and I told her about the current situation. We were due to see our consultant this week anyway, so she wants the Dr to have a quick observation and then make a referral to get him seen by the right people ASAP. She couldn't have been nicer, I mentioned the OT, and the nurse thinks that this should go ahead, while we get an official diagnosis from a doctor.

I suppose for once it's a bonus that we have great hospital connections , and they are desperate to see him excel at school too. I feel much better that we will have things in place and hopefully the right support soon.