Relieved and gutted at my son's additional diagnoses

[cmuir]

Hi

 

Bit of an update...

 

My son was diagnosed at the age of 4.5 with AS. As time has went on, it became obvious to me that he has others issues, namely writing. School were reluctant to state this formally, but his writing resembles a 5 year olds and is very variable - ranges from being illegible to only just legible. Anyhow, after getting the runaround from school, OT, etc, I contacted my son's consultant who actually went into school to observe him 2 weeks ago. Although he exhibited quote 'oppositional behaviour' due to anxiety, she was able to observe him in his usual group environment and has now formally diagnosed dysgraphia and dyspraxia. I feel a combination of relieved and gutted. I expected the dysgraphia, but dyspraxia has came as a complete bolt out of the blue. All that remains to be done is tell the school and see what additional support will be put in place.

 

Caroline.

[Sally44]

I know exactly how you feel.

As you know I too was being given the runaround, and like you I had to go back to the paediatrician. She also saw my son and added 'learning difficulties' onto his list of diagnosis, which, along with other things, forced the EP service to assess him.

The biggest shock for me was when I went to see the EP and Headmaster of a DfES approved school for children with dyslexia who are not making progress mainstream. I had no intension of seeking a diagnosis of anything. I simply went to talk to him to get his advice on how I might start doing things at home and whether he could recommend any software or books etc. He saw my son and said he was too dyslexic even for his school. That was when it dawned on me how severe his difficulties actually were. He was also diagnosed with severe visual dysgraphia.

The OT has since said "ASD and Dyspraxia are virtually the same thing and therefore I don't see the need for a formal diagnosis", which sounds to me like he does have dyspraxia, but there is no point adding that as well.

 

You feel relieved that you were right in your suspicions that something was not right. Yet to add another diagnosis means it is even tougher for them.

 

I'm sure you're already looking at these different diagnoses. They can have an effect on learning. So look at the cognitive and learning symptoms of both these diagnosis. It might be helpful in recognising any difficulties he is having.

[cmuir]

Hi Sally

 

Thanks for your response. I've made my mind up that it's not helpful to tell kiddo that he has something else to add to AS as that's difficult enough for him to get his head around. Whilst I'm relieved in a way, I take no satisfaction in it. I'm going to take a few days to work out how to broach this with the school. It disgusts me that my son's class teacher is also the Support for Learning Teacher, yet she didn't know what dysgraphia is and she's actually put stumbling blocks in my way. I don't expect teachers to diagnose kids (in fact, I think that is very wrong give that they're not qualifed to do so), but I do take umbridge to the fact that Rs difficulties have been ignored and that no issues were flagged up. I feel certain that the school will turn around and say that he's getting all the support he needs just now ie dyslexia support, a scribe, alphasmart keyboard, computer, motor skills PE group, etc. Still, in theory, additional diagnoses should equate to more support, but certainly, your posts and others show that that simply doesn't happen and shouldn't be taken for granted.

 

Caroline.

[call me jaded]

We identified dyspraxia very early on in DS - way before ASD. I found a great deal of information and support from an online forum run by Apraxia Kids. At the time I was a member they had OTs and SLTs who contributed advice.

[Sally44]

Hi Sally

 

Thanks for your response. I've made my mind up that it's not helpful to tell kiddo that he has something else to add to AS as that's difficult enough for him to get his head around. Whilst I'm relieved in a way, I take no satisfaction in it. I'm going to take a few days to work out how to broach this with the school. It disgusts me that my son's class teacher is also the Support for Learning Teacher, yet she didn't know what dysgraphia is and she's actually put stumbling blocks in my way. I don't expect teachers to diagnose kids (in fact, I think that is very wrong give that they're not qualifed to do so), but I do take umbridge to the fact that Rs difficulties have been ignored and that no issues were flagged up. I feel certain that the school will turn around and say that he's getting all the support he needs just now ie dyslexia support, a scribe, alphasmart keyboard, computer, motor skills PE group, etc. Still, in theory, additional diagnoses should equate to more support, but certainly, your posts and others show that that simply doesn't happen and shouldn't be taken for granted.

 

Caroline.

 

Presently my son is not getting any of the things you mention. He has a visual timetable, some small group work and access to a TA in a school that has experience of ASDs, but which is still mainstream. He was not getting access to the EP, OT or SPLD teacher because school said he was making good progress and therefore were not seeking their advice. When I informed the OT that my son had been diagnosed with a severe degree of visual dysgraphia she went into school and said she saw him draw a line and was happy with that. The latest EPs report seems to be suggesting access to a computer and suitable software (I am looking for software that supports learning using visuals eg. widgit or clicker).

What you do find is that children with this combination of difficulties ie. ASD, Speech Disorder, Dyspraxia etc do tend to have learning difficulties. Personally I don't care what they call the learning difficulty. Everyone who is qualified knows it is likely they will have these learning difficulties with those diagnosis. But often nothing is done and progress (or lack of it) is seen as typical of the diagnoses. That forces the parent (IMO) to have to 'prove' co-morbid diagnosis to get access to supports.

My advice would be to get a very good base line of what he can do and what he has learnt. In that way you will be able to see what progress he is making.

[chris54]

I feel certain that the school will turn around and say that he's getting all the support he needs just now ie dyslexia support, a scribe, alphasmart keyboard, computer, motor skills PE group, etc. Still, in theory, additional diagnoses should equate to more support, but certainly, your posts and others show that that simply doesn't happen and shouldn't be taken for granted.

Not to take away from the advantage of having a diagnosis. If the symptoms are already being addressed it may not mean more support. Not knowing the severity of the conditions or the level of support being given at present but the types of support mentioned are those that would be relevant for both conditions.

 

Obviously any support need to address the needs of the individual child, two children with the same diagnosis may not need the same level or type of support.

 

It is thought that dyspraxia affects up to 10% of the population to some extent. Once upon a time called clumsy child syndrome.

Dysgraphia, the most obvious system is poor hand writing but it more than that.

 

 

[cmuir]

Not to take away from the advantage of having a diagnosis. If the symptoms are already being addressed it may not mean more support. Not knowing the severity of the conditions or the level of support being given at present but the types of support mentioned are those that would be relevant for both conditions.

 

 

 

Hi

 

You're absolutely right. I don't think the school could provide any more support than they currently are for dysgraphia, however, given that no one knew or noticed the dyspraxia issues (yet, in hindsight I'm kicking myself because watching him getting in and out of the car, trying to button up his trousers, etc, I should have noticed!), obviously no support was being provided, so that's need looking at. As you say, it would be interesting to try and gauge how these issues affect kiddo in terms of severity.

 

Thanks for your comments.

 

Caroline.

[mossgrove]

DS #1 has a triple diagnosis of Aspergers, ADHD and Dyspraxia (A potent combination!)

 

DS #2 has an ASD diagnosis and does not suffer fro Dyspraxia (so I am not sure I agree with the statement above).

 

DS #3 has yet to be doagnosed with anything but has been referred to the Consultant pediatrician and are expecting a diagnosis of ADHD. He also has great difficulty with fine motor skills (Handwriting, buttons etc.) but no difficulties with gross motor skills so we will wait and see what that adds up to!

 

 

Simon

[Sally44]

Hi

 

You're absolutely right. I don't think the school could provide any more support than they currently are for dysgraphia, however, given that no one knew or noticed the dyspraxia issues (yet, in hindsight I'm kicking myself because watching him getting in and out of the car, trying to button up his trousers, etc, I should have noticed!), obviously no support was being provided, so that's need looking at. As you say, it would be interesting to try and gauge how these issues affect kiddo in terms of severity.

 

Thanks for your comments.

 

Caroline.

 

Now you start to get into all kinds of grey areas. Obviously all the different diagnoses maybe to different levels of severity. That in itself brings up questions of what type of school is most suitable. In my case I am trying to go with what diagnoses has the term 'severe'. He has a 'severe' language disorder and 'severe' SPLD. He does not have severe autism.

And you cannot follow a trail from each diagnosis to each difficulty. So although my son does have a diagnosis of dyslexia his language disorder, sensory integration disorder, auditory processing disorder, etc etc are all going to be playing a part and compounding on eachother. That is why I am saying that JUST SALT input is not going to meet his needs. That is why most special schools (especially independent ones) have a SALT and OT on site. They too recognise that the professionals need to work together. There are many little aspects that my son might benefit from and which may cause improvement in his learning. That could be something as basic as eye tracking exercises, or sensory integration therapy etc.

 

I would make this comparison. The medication Statins is given to people with heart disease and those more prone to aneurysms. There is no one to one evidence that it reduces the risk of either. However as a population study those taking statins do have less heart attacks and aneurysms, so the drug is said to be doing something, but nobody really knows what that is. A Multi displinary team may have similar results. Who knows whether the SALT programme, OT programme etc was the one to help the child make progress. But it happened.

 

And I think most professionals do know the difficulties the child has. That is my impression anyway, because whenever my son has recieved a further diagnosis I have always been told "but that is typical of a child with an ASD". But if they knew that, why were they not doing anything about it. And I don't think anything is really 'typical'. There is the diagnostic criteria, but out of children diagnosed with an ASD some will go mainstream and do well academically, whilst others will have to go to a special school, some with have co-morbids whilst others don't.

 

And regarding 'severity' of any dx. Some assessments try to make a comparison between cognitive ability and level of academic performance and say that because there is a big difference that the 'severity' of the dyspraxia (or any other diagnosis) is therefore greater otherwise their academic achievement would be higher. BUT it is proven that ALL children, regardless of cognitive ability, make better progress when there is a MDT working with them.

 

But as a general rule you need to prove that the child has potential to make progress. So that usually means getting more input from one professional and seeing if that corresponds with increased progress. If you can prove that is the case, the next step is requesting input from other professionals is either increased or put into place - and obviously you need evidence that that input is needed. All in all that can take years to prove.

 

So in my case the SALT input has caused the areas worked on over the last 18 months to move into the 'average' and 'advanced' range. So that demonstrates potential.

[madme]

My teenage son has a dx of aspergers, hyperkinetic disorder (severe adhd), Dyspraxia and dyscalculia. The last two for him have required additional help. i agree that an onsite ot and salt can really help. when he first went to his current school his ot worked on his core sports skills 1-1 which really helped him. he wont ever play rugby for england but he can join in sport lessons now Dyspraxia is a lot more than just being clumsy. it depends on the severity- my son was functioning at a very low level and hence met the requirements for intervention. there are some go6d bo6ks on dyspraxia by dr kirby and dr portwood. good luck

[smiley1590]

i was officially diagnosed the other way around dyspraxia first then the AS years later followed but always knew there was 'something more' in the background lurking there than just dyspraxia as so many signs that knew weren't just dyspraxia but added similiar connected condition my family assumed i was of dx with dys around 8-9 years old and AS at 14 years old i know it hard to hear and abit of shock once given of dxs added on to the list but think of it that this gives your child the opportunity to know discover ways of coping and will have some 'answers' to questions not be so confused and frustrated and why may struggle and find things harder more of challenge everyday than other children their age face you'll have explaination ready to give to find help and support with of dxs now given to you!

 

take care

good luck

XKLX

[MarieM]

My son was diagnosed with Dyspraxia first (aged 4) quickly followed by ASD. He also has learning difficulties. I would recommend contacting the Dyspraxia Foundation. There are loads of tips and advice on the website. Also the books previously suggested were invaluable. He is now 15 and, though it took a lot of hard work, has really improved. Good luck. xxx

[coolblue]

Just wanted to add a comment about diagnosis.

 

My son was diagnosed with ASD at 10. Prior to that, at 7, he’d been identified as having sensory integration disorder - but not dyspraxia, even though he has some dyspraxic tendencies - and his speech, reading, handwriting and arithmetic were so impaired that if he’d been tested, there was little doubt that he would have ended up with a diagnosis of verbal dyspraxia, dyslexia, dysgraphia and dyscalculia as well.

 

Also, although several standard sight and hearing tests had found him to be within the normal range, he’d been found during other tests to have poor tracking in his right visual field, large saccades, nystagmus, specific vestibular impairments, difficulty in discriminating between specific speech sounds and slow auditory processing.

 

We don’t know what causes his visual or auditory impairments, but they explain all my son’s development difficulties. To be good at communication and social interaction, to be able to switch between activities, plan and control your motor movements and to read, write and do arithmetic, you need reasonably good, consistent visual and auditory skills. My son’s biggest problem is that his visual and auditory input isn’t consistent. The letter b in his left visual field doesn’t look the same as the letter b in his right visual field. Nothing looks the same in his right visual field. His poor control of eye movements means that letters and numbers appear to reverse and move around, and slow auditory processing means he can’t monitor and decode speech efficiently - his own or other people’s. There’s no way he can keep track of a fast-moving conversation between his peers.

 

So although it’s possible that my son’s visual and auditory difficulties are due to some underlying problem with the wiring in his brain, there’s little doubt that it’s the way the wiring affects his visual and auditory processing that causes a whole range of learning difficulties, rather than the fact that he has a list of separate ‘conditions’.

 

What’s tragic is that because no one knows what causes the what we call ASD, dyspraxia, dyslexia, dysgraphia or dyscalculia, they are generally treated as black boxes. I’ve lost track of the number of times I’ve been told something or other can’t be addressed ‘because it’s his autism/sensory integration disorder’. What has helped is supporting his visual and auditory problems: reading large print books with wide margins, writing maths problems vertically instead of horizontally, using number ladders instead of number lines, using squared paper for writing and allowing him to move around whilst reading books that he would struggle with. The last one has been godsend and was a tip from his SALT - activating the vestibular processing area of the brain also activates the auditory processing area apparently, and has dramatically improved his auditory attention span. He went from being able to concentrate on one page of the Secret Seven to an entire chapter of The Edge Chronicles in the space of a year.

 

I really hope your son’s school can put in place the support he needs - just be aware that he might have sensory processing problems even if his sight and hearing appear normal.

 

cb