Dr thinks dyspraxia, i think Aspergers....need some good old mumsnet advice!

[curvychick]

Ok, i'm not really too sure where to start and i fear this may get long, but ANY pointers, info or tips that anyone can give to help me out would be very much appreciated!

A brief overview of my sons situation would be a good place to start i guess! DS1 is nearly 7 (in June) and has always had his quirky ways. Up until about 18months ago i just thought he was a bit difficult/sensitive and kind of 'high maintenance I knew he wasnt liket he other kids even at toddler group and preschool, but despite my concerns about his social interaction and management of his emotions, i have been told by his key workers and teachers that there were no problems. At the start of this school year a new headmistress joined his School and at the end of Sept she called me in to discuss Max as she was concerned about his emotional wellbeing. I knew he was feeling very angry and sad, i would even have said he was depressed, but to say that about a six year old felt wrong somehow.....School and i decided to keep communication channels open and see if the situation improved. In October half term my parents took Max away to Egypt for a holiday (lucky little fella!) but when they got home my mum and Dad both sat me down and said that they were really worried about Max. We talked about everything and when we tallied up all of his quirky ways, sadness, co-ordination problems, devlopmental delays and social and emotional issues, we realised that actually there was something pretty wrong going on. I was gutted that as his mum i had failed to spot all of these glaringly obvious things and piece them together to create a bigger picture.....Anyhow, i went straight to the gp on monday and he was very attentive and aggreed that it sounded like something was amiss and suggested he refer me to a paed. I asked to be refered over to the John Radcliffe in Oxford as i have always found them to be excellent but he insisted that it was a community paediatric based service and i would HAVE to be refered to our local Hospital in High Wycombe (which is pretty pants tbh). It waited 3 months for an appointment to come through and after Christmas when we had heard nothing still i rang the childrens ward and fond out that the hospital had been sending out paperwork to the address that i lived at when Max was born (3 moves ago) I was actually due to take Max down for an appointment that afternoon but due to being unable to arrange last minute childcare for his 2 brothers, the consultants secretary arranged for the Dr to call me so we could have an initial chat on the phone. When she rang i explained my concerns, detailed his emotional and social problems and explained how he also had prolems with co-ordination, which although were holding him back ie writing, sports etc, it was more his social and mental health problem sthat i was concerned about. By the end of our chat, she had said it sounded like dyspraxia... when we finally got to see her at the hospital int he middle of Feb, she had already diagnosed him without seeinging him pretty much. She checked his joints (extremely hypermobile, got him to hop on one foot and various other co-ordination tests and then asked him a few questions, which i feel were loaded to get the answers from him that she wanted, so he would fit the dyspraxia box. She continued to say it was dyspraxia and the social/emotional issues were down to poor self esteem?! She agreed to do a school visit to basically shut me up i think and she went in to see him at school yesterday. I popped into school last night to see how it had all gone and his form teacher said he'd ahd an excellent morning which was representative of an average morning and she had told the dr that and that they feel that he doesnt have interact with his peers any different than they interact with him. She then added that as they have been together for 3 years they all know how to wind each other up, and push each others buttons. I am furious! School put Max onto a special beahviour recognition programme and set up a nurture group (which he has joined) to help him to talk and make sense of his feelings, actions and emotions, and these extra measures have helped enourmously. He is much happier at home and school now as a result. But it has taken him nearly 3 years to settle down, make friends and feel comfortable going into school....that is not normal and certinly not how his peers are. I am really cross that school got the ball rolling with gettting Max some help, only to make out that i am being an oversensitive neurotic mother and that Max is no different from his class mates. I came out of school, having left Max under the supervision of a friend, to find him upset. He said that x's mum was upset that we ere going to the park with them.....I asked exactly what she had said...
Max said: We are coming to the park with you too
X's Mum:Ooooh No!
She said it in a jokey eye rolling way, which Max didnt get at all. The humour went straight over his head and he took it as a statement of fact and came to the conclusion she was sad......not the way most would interpret it and very typical of the literal way he interprets everything.

So i guess my questions are, now i have written this epic post....

What happens is i cant get the dr to listen/believe/take on board what i am saying?

Is the support a child with dyspraxia recieves very different to what a child with Aspergers would recieve?

Can i demand a refereal to the hospital i wanted to go to to get a second opinion?

I know Max's problems are relatively mild compared to some, but they have a massive impact on the way our family life runs every day, and although the co-ordination and developmental stuff is a problem and we need some support there, i am really worrying that without some help and support to deal with the social and emotinal problems, i am going to end up with a very sad and lonely little boy when he moves schools in Septemeber and moves on from all of his other friends into a massive big school (only one in our area with spaces and yr 3 intake and not where i would have wanted him to go in a months of sundays tbh)Also, is it not easier to try and get help, interventions and support on the go now whil;e they are still young, instead of dealing with it in teenage and adult years?

Urgh, so sorry this has got so long, as you can tell, i am right at the start of what i fear will be avery long road with alot on up hill struggleing and would really welcome and appreciate any advice and words of wisdom that anyone can offer with navigationg this infuriating system!

Ohh, also thought i should add that despite saying we would have referals through for OT, physio, salt and enuretic clinic (bedwetting) nothing has happened. we got a letter from the OT saying that we were on a waiting list to go on the proper waiting list, but nothing from any of the others.....is it usual considering we saw dr in Feb and we are now end of April? Have tried chasing but all the secretary will sya is that the referals ahve been sent grrr

Thanks again!

Hello. What a brilliant and detailed post ... it must have taken you ages and I bet a damp eye here and there .... No experience of ASD, but have son aged 6 dx ADHD. I would have thought your ds needed to see an OT for confirmation of dyspraxia dx ? I always try to keep one thing very clear in my mind and that is ... no matter how painful the truth is, you know him better than anyone else and you are the expert in your child iyswim. If you are truly unhappy with how the assessments have gone, you must speak to GP or the paed - you have every right to a 2nd opinion. Someone will come along soon who will know. Good luck.

Sorry I have no experience (yet) of paed appts as still waiting for ours but just wanted to say what an excellent post that was and to show my support.

Good luck,x

Urk! What a horrible set of situations for you, curvychick.

Have a go at the relevant checklists on the autism site

www.autismresearchcentre.com/tests/default.asp

Can't diagnose anything by doing them yourself, of course, but they're clues.

If necessary, I wonder if you have any chance to get a private diagnosis done? Not cheap, but it's fast and it's an answer?

hi curveychick.
It is so frustrating and I really feel for you, especially as we've been through a similar experience.

You really need the OT appointment asap. They can run a battery to determin whether or not he does have dyspraxia. The tests results they get will show whether your son does have motor control issues or if it is clumsiness which could be a sympton of another ASD issue.

There is an awful lot of overlap between dyspraxia and autism/aspergers. My ds1 has an official dx of dyspraxia, and HMS, but also has social and communication difficulties on his file because of the autistic traits he has.

I don't think the support he gets for the issues that you are describing should really matter as to whether he is suspected of dyspraxia or aspergers. Both conditions present very similar issues.The school and the paed should be supporting you with the issues he has, regardless of whatever condition he has.

I really feel for you. My ds1 is also going up in september and I am also dreading it. Waiting lists for everythign are terrible.

The only other thing you could do is get in touch wiht charities such as BIBIC or the dyspraxia foundation and try to get soem support from them. I've not tried them personally, we're stil muddling through best we can!

I also thinkt hat the paed really shudt be trying to dx dyspraxia without a OT report, especially if he has hypermobile joints, since that jsut aggravates everythign so much more, and causes enough problems in it's own right.

Well done curvychick. That must have been an extremely difficult post to write.

You mentioned that the headmistress also had concerns. Would she be willing to write a report for you detailing DSs behavioural difficulties? I found DSs school report had great weight in his assessment.

Agree with the others - if you're not happy then push some more. Write everything down and ssk to see the pead again. Did the Paed ask you to complete any of the tests Amber suggests? Don;t know how she can diagnose without.

We had our assessment and DX in Jan and have just got an OT appouintment through for June so stick with it and keep phoniong if you're worried. Check they have the correct address

BR

Hi curvychick - I also feel for you having been in a similar situation.

I agree with the other who say there is a huge overlap in these conditions. DS1 sounds very similar and now has a dx of AS. However, to my mind most of his problems are to do with dyspraxia and his OT doesn't disagree with this.

I think you need to go through the same process that we did and other Health authorities seem to have as well. We initially got referred to a paed who did an initial assessment of DS and then referred us to a SALT, OT and psychologist. The idea was they all got together at the end and came up with a dx. It all went a bit wrong for DS though and the only people to turn up to his final review were the SALT manager, who had never met DS, two psychs who had never met DS, us (me and DH) and the school SENCO. They decided on a dx of AS even though the the Consultant clinical psych said he had some but not enough traits for AS, and the OT not being there to say how bad his dyspraxia symptoms were. I think he had the wrong dx and should have had the same dx as ChopstheDuck's DS but what to do about it is a whole other thread.

Anyway, the point of the story is that
a. you should be seeing more than the paed (but it is a very long process),

b. the dx is not totally straight-forward and it is a matter of interpretation and also,

c. it doesn't really matter as my DS still gets the OT help from the school he needs and also some help with the AS traits too. All this was in place before he got his dx so I suppose they are treating the symptoms rather than treating to a label iyswim.

Have you had a look at the Dyspraxia Foundation website here. There are lots of social and emotional problems associated with the condition so it might be the better dx for your DS although until everybody has seen him I don't think you can say for sure.

I hope you get something sorted out soon.

(Oh sorry that was a bit long).

This was another option amber, my folks have very kindly offered to pay if anything can be done to help. But i was concerned that if we got a private diagnosis, how it would affect any other help on the NHS we may need as a result of the private diagnosis. I cant expect my parents to pay for all of the support he is going to need and dp and i just dont have the funds unfortunatley A lady at the CAB suggested we try for DLA and have completed the totally depressing and epic form , but am also concerned that as the Dr and school arent behind me wrt his emotional/social/behavioural issues this will be a stumbling block too. Any extra finances would greatly help as i do know he has low self esteem and enrolling him in after school activities he enjoys would be so good for him. He did a free active kids course last term and loved it but we just couldnt afford to pay to keep him there

I have just looked at the checklist that you posted and he has scored 23/31 and it says the cut off is 15 for possible aspergers.......me thinks i will print it off and take it to the next appointment!

Thank you also barmymummy and icandothat, i felt like i was writing a book tbh when doing that post, but know with things like this, the more info you can cram in, the better picture the reader can get to help with any advice etc

Thank you for your support

Wow, while i was waffleing on, even more posts! Thank you! Its so sad that others have been battleing through too, but you are all here to tell the tale so i guess there is hope for us yet

Neicie, you mention that your son gets suppoert from the OT and some support for his aspergers traits, would you mind if i ask what support the OT offers your DS and what other help withe the AS side of things you get too? I ask because although i am concerned about the physical development side of things, i know it willbe greatly helped with ot/physio etc but its more the hidded stuff in his mind that i am worrying about. I can help with exercises, physio etc but i am at a loss as to how to improve his outlook and perception of things......can he be taught how to interpret and understands things in a more 'normal' way (god that sounds awful but i hope you know what i mean) or do i just have to accept that this is how he will always be? For the most part quite angry, sad and frustrated.....I just feel so very sad that my gorgeous little man could journey through life, not enjoying things to his full potential with everything being such a struggle and hard work for him. It breaks my heart

The AS support doesn't amount to much.

Of course they know he is a little 'different' at school and I think make allowances which is good but the only actual help he gets is a session once a week they call the friendship club where he and another child whom I suspect might have AS as well do some role-playing for things like turn taking. Nobody has really gone into detail with me what it involves and DS isn't very forth coming so I don't know for sure.

Tbh, I am not sure that there is a lot you can do if you aren't having any particular troubles.

The OT is done with the TAs and there is very little help needed from us. The OTs seem to rely on the school for the bulk of the work. He has handwriting practice as it isn't good but loads of stuff for his gross motor skills as well and trying to improve his core strength. The OT sees him about once a year and puts together a programme. Not a lot is it, but they are horribly understaffed. The school have just upped his sessions to 5 times a week instead of 3 although they are shorter but they thought little and often might be better. I think they may be right.

How are your DS's motor skills? Can your DS ride a bike, run and jump and that kind of thing? Is he able to dress himself, use a knife and fork, tie shoelaces or even brush his teeth without help? My DS is getting to grips with some of it at last but he is nearly 9!

As for his mental state, finding something he is good at helps and also having a dx helps as you know what you are dealing with.

I got a new book yesterday, recommended on a thread, called 'The Unwritten Rules of Friendship: Simple Strategies to Help Your Child Make Friends'. I haven't read it yet but did check that it mentions AS and so is relevant. It might be worth a look if you think relationships are an issue.

Thanks for getting back to me Niecie I ahve found with ds that since we saw the dr and she told him that there is a definate reason for why he cant do some things/struggles with other things he seems a little more relaxed. Its almost like now he knows its not becuase he is stupid/thick/clumsy (all names he used to call himself )but because there is an actual reason. He still has bouts of the self hatred stuff but they are certainly not as extreme and dont last as long as they did.

WRT his motor skills, he learnt to ride his bike this year (with stabilizers) and can run and jump but it is very awkward with alot of tripping tumbleing and he finds the concentration required exhuasting tbh. He can dress himself but cant do laces, his tie, struggles with buttons and is forever wandering around with the hook on his school trousers undone and his bum hanging out lol He has only recently learnt to use his knife nad fork, and can only cut very soft esay foods and left to his own devices will ALWAYS revert to using his fingers! He does brush his own teeth but not very well tbh and his paternal grandfather is a dentist so Max used to see him whenever he went visiting with his dad. However his dad disappered off the scene last month and wont be returning anytime soon, if ever tbh, so we have the first trip to a 'proper' dentist tommorrow-eeek! He is very anxious already but am hoping that with plenty of warning encouragement and praise (and the carrot of an aftenoon off school and a picnic afterwards ) we will be ok, touch wood.....

The book you mentioned sounds very interesting so will check it out on Amazon later

Thanks again for coming back to me

Sorry to butt in but we bought DS and electric toothbrush (bog stadard oral b very cheap on amazon) and it really helps him clean his teeth properly......

BR

The NHS and schools etc have to do all they reasonably can to treat all children with a diagnosed disability equally and fairly and give them the right options to make their chances as equal as if they hadn't got that disability. There is nothing in law to say that a private diagnosis by a properly qualified person doesn't count. They might get all trembly-lipped about it, but that's tough. They can't break the law.

And a private diagnosis gives you the info you need to help your child, and advocate for them, and go to the charities and services for support and advice. All very worthwhile if everyone else is messing about for weeks and months and years, I'd say.

It's not a perfect solution, but if people can afford it, it's usually worthwhile?

I'd rather they weren't needed, but some areas of the country and some practitioners just don't seem to help in ways they should.

Hi

I haven't read all the posts so sorry if I repeat. My chap is the most dyspraxic fella on the face of the earth which was masked by his ASD/Asperger's - some very quirky stuff going on when little - mainly because he was stressed (particularly in school due to the dyspraxia). Big huge vicious circle.

Anyhoo there are huge shades of grey between the two conditions (it's called comorbidity - which sounds horrible but just means that one condition leaks into another). You are more likely to get more support if he has 'Aspergers' From reading your post he probablly has both - even better - sorry but he is more likely to get support if he has 'complex range of difficulties' ie, more than one. By the time I finished getting my son sorted he has a list of 6 things he's got. It all sounds bleak on paper but as a person he is fabulous, funny, kind, warmhearted and very very good at housework!

I would pay to get him assessed by a private OT. They see huge numbers of kids and kind of have an antenae and can tell (as can a lot of mums with kids like this). I can recommend one in Hertfordshire way. It was the best £500 I have ever spent.

My son now goes to a lovely secondary special school and gets TWO lots of OT therapy a week and can now tie his shoe laces, walk and run in a straight line, chop up carrots and do lots of stuff he never could before - although his handwriting is still crap!