How were you diagnosed, who by, what was difficult in this

Chat with others about dyspraxia and share your experiences.

How were you diagnosed, who by, what was difficult in this

Postby RD » Tue Jan 25, 2005 10:32 pm

Hi, I am interested in youre experiences, the stories of who diagnosed you, who first suggested dyspraxia and the different ways in which everyone was first recognised. Also who you have seen since and the ways things have changed. Any information, please post it, thanks :)
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Postby parnassus » Sat Feb 05, 2005 8:10 pm

I know Matt has written his story on the other site, www.matts-hideout.co.uk

There are collections of teenage stories both on Matt's Hideout and in the Dyspraxic Stories section of this forum. Looking at these might help you.

My path to diagnosis began at the end of a truly terrible maths lesson. I was fifteen years old and I had had enough of being branded lazy and difficult. I knew that there had to be something different about me, and this time I was determined to let no one stand in my way as I desperately tried to find out what it was. Luckily, I had a friend with dyslexia and I was able to see that many of my problems were similar to hers. I was surfing the web for information on dyslexia when I stumbled across Matt's Hideout. One click of the mouse quite literally saved my academic career.

As soon as I had amassed enough information about dyspraxia, I approached the special needs teacher at school. At first she was very reluctant to help me as I had not been referred by a member of staff (very few of my teachers had even heard of dyspraxia) but I managed to convince her that I was in trouble. So she arranged for the educational psychologist to come into school, and after a three-hour long assessment I was diagnosed with severe dyspraxia.

The psychologist sent me to a neurologist to check for possible brain damage. I had an MRI scan and a blood test to examine the health of both my brain and my chromosomes. Then came an eye appointment with the opthalmologist, and finally an assessment with an occupational therapist. All of them agreed with the original diagnosis. I now carry a label of 'severe dyspraxia, with elements of non-verbal learning disorder'.

Sounds daunting, but it isn't. I love being me :P
"This above all, to thine own self be true." - Polonius, Hamlet.
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Postby chrismalaga » Wed Feb 16, 2005 1:44 pm

I was diagnosed at about 5 or 6 with dyspraxia because my writing was so messy and I couldn´t do basic maths. Also my art was a complete disaster. I´m sure there are more reasons, I just can´t remember them. :P
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Postby SomeT » Wed Feb 16, 2005 7:21 pm

I am 19, and still finding it really difficult to get assesed for it! Its so frustrating due to the fact that I have trouble with my speech and find it hard to explain the simplest things to people.
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Postby parnassus » Sat Mar 19, 2005 5:17 pm

It does seem to be very difficult for teenagers to receive a formal diagnosis. I think this is in part due to the mistaken (but still prevalent) assumption that dyspraxia and DCD are just 'Clumsy Child Syndromes'. There has never ever been a label of 'Clumsy Adult Syndrome'!

We really need to do some serious awareness raising in July. Do you think there's any chance that some of us could meet up to work on a collective project?
"This above all, to thine own self be true." - Polonius, Hamlet.
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Postby Tom » Thu Mar 24, 2005 1:07 pm

I was diagnosed last year. It all started when I got shouted at because of my handwriting and i had to copy all my work out again. So I talked to the special needs person and she asked me show her how i catch a ball etc. She then said I had dyspaxia and told me what it was.
That was basically the story of being diagnosed.
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Postby medrich11 » Tue Mar 29, 2005 7:00 am

I cna't remember when I was diagnosed but I have known about it for years so I must have been about 3.
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Postby k9ruby » Fri Apr 01, 2005 4:15 pm

I was diagnosed (I think) in year 5 or 6. my diagnoses consisted of:

-OT assement
-PT assement
-This peron at the hospital asked me how to do mazes, build pattens with blocks and copy shapes and repeat things for her(?)
-MRI scan
- CT scan

when i was little one docter thought i had dyspraxia but wasn'tsure- we even travelled to london to try and work out what was the matter with me (but he didn't have aclue what he was talking about!)

I knew from as far as i can renember i also have Hypotonia ( that means i am very 'floppy' have weak muscles and low mucsle tone and i am extremly flexible!!). I also have Inverted legs and feet (especially my femurs) which mean my legs turn in. I also found out from my IEP (mum hasn't told me about it) that i have mild AS. :)
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Postby Ann Ony-Mous » Fri Apr 01, 2005 6:41 pm

At the age of 8, I had three attempts with the pyschologists in which my mum tried to persuade them of my difficulties. On looking back, I understand now that despite my mum's insistance that my problems were totally different the pyschologists were trying to diagnose me with dyslexia. They gave me a piece of paper and some coloured pencils and told me I could do anything I liked with them. I promptly wrote a short poem, in acrostic format entitled 'THE OCEAN.' Despite the fact that the writing was so bad that I had to read it to them and show them that the words 'THE' and 'OCEAN' were written vertically along the page so that each line began with one of those letters, they still failed to see anything unusual. In actual fact we had been learning about acrostics in class and had created one as a class, but not individually. I wanted to compose my own, as I got little say in class discussion. It did not occur to me that most children of 8 would rather be playing outside (something at that time I destested because of my difficulties) than writing poetry.

My mum told them that I was the victim of vicious bullying at school, could not fasten buttons unaided, could not pour drinks, or ride a bicycle, detested using escalators or lifts because of balance problems, could not walk until the age of 2 and never crawled, had no ball skills and had difficulty joining in with other physical activites such as skipping and did not seem to be mixing in with other children. They ignored her. My mum considered moving schools, but in the end we decided against it and she tried to help me overcome my difficulties at home, by making me practise the things I found difficult. I opposed my parents in this at the time but now cannot thank them enough, if anything, for putting up with my tantrums!

At age 11 it became time for me to move to secondary school. Secondary school was much larger and more demanding in skills such as self organisation, so my mum resumed her efforts in getting me diagnosed. This time it was a success, I went to a different pyschologist. I stumbled against the bannister on my way up the steep stairs and afterwards, (upstairs was quite confusing, an odd shape with a lot of doors) couldn't find my way to the stairs. When the pyschologist spoke to my mum she said that really, that was all the information she needed.

My mum told the deputy head of my new school about my difficulties. The deputy head said that they had a girl who used computers for all exams and that they were quite happy to have me. Since then my head of year and the rest of the staff have been nothing but helpful. They do not patronize me or make my difficulties very obvious to my peers, they just give me help if and when I need it and I am always free to talk to them about my difficulties. At profiling and report reading (this is an opportunity to talk to your form tutor about your grades and your subject teachers and anything else you might need to discuss) they encourage me and ask me what help I am likely to need. My reports focus on what I did right rather than critisizing me for what I did wrong as do most of my teachers. My peers were generally sympathetic and supportive (except for a few) and those that were not, generally (though not always) refrained from open rudeness. I'm not saying that things are perfect(they're not, especially matters concerning my peers) but I get a lot of support and encouragement. I cannot thank my school enough and I am a very lucky person.

My luck wasn't good to start with, in my junior school, my teachers openly ridiculed me, I was hurt physically, verbally and mentally, my parents were confused and saddened to see my mysterious difficulties and the pain they were causing me and the pyschologists didn't want to know. I still struggle in PE and practical subjects and still indure the occasional snide remark. I still find it difficult and intimidating to socialise and maintain friendships, and I still amuse the class with quite unintentional comedy antics. But I'm free, I know who and what I am and I'm not going back. I can only improve: when the going gets tough, the tough get going. That is a phrase of my own invention (yes I am Miss Terry as well I wanted to change my identity, but then decided that that was a bit stupid) the phrase means that when things get hard it is the really determined people that try to tackle the problem and win. I personally believe that anyone who has had to live with a learning difficulty must be very strong willed and courageous for not just giving up, in other words, we're tough and it's tough for anyone who didn't see us for the wonderful people we are.
When the going gets tough...the tough get going.
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Postby Ann Ony-Mous » Fri Apr 01, 2005 6:43 pm

I also thank my parents very much for realising the difficulties and helping me to cope with them and my friends for liking me for who I am.
When the going gets tough...the tough get going.
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Postby parnassus » Sat Apr 02, 2005 11:35 am

Isn't it amazing how things change once you have learnt to see yourself in a hopeful light? When I was being bullied, I believed everything the bullies said about me. I became the person they thought I was. But after a long and rocky journey, I discovered my dyspraxia and am now extremely proud of myself. I consider myself very lucky to be who I am. Like you, I still sometimes receive a few snide remarks. But they genuinely don't hurt any more. The sting has been taken away. I just look at the 'normal' person who made the comment, smile, and think, "I wouldn't trade lives with you for anything."
"This above all, to thine own self be true." - Polonius, Hamlet.
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Postby Ann Ony-Mous » Sun Apr 03, 2005 8:24 pm

I can't say I always like being the way I am, but until I read Caged In Chaos I absolutely hated, and didn't understand the way I was and am. Now, I have mixed feelings. I don't always know whether I am a 'butterfly': striking, original, unique but wonderful or a common place bluebottle which is annoying and exists to be sprayed or squashed. But I realise now that hating myself is a bad thing and that's got to be the first step forward.
When the going gets tough...the tough get going.
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Postby ~Jenny~ » Sun Apr 03, 2005 9:08 pm

I was diagnosed nearly two and a half years ago by a paediatrician.

My co-ordination difficulties were picked up on when I was six (i'm now nearly 16) and i think that was because I couldn't skip (still can't do more than 2/3 in a row and sometimes struggle doing more than one). I had to go see a doctor-type person (i really can't remember it at all) and I've been told that the diagnosis was that I had borderline co-ordination problems but nothing severe enough to get a referral to anywhere else.

Up until about year 5 I was bullied and had very few friends. I struggled in PE and my handwriting was very messy, this did improve but it was shortlived as I soon forgot how to write neatly and went back to messy writing. When I got part way through year 5 most of the bullying stopped as I had finally made friends who supported me. They knew I wasn't very good at PE so they would encourage me to try stuff and be supportive when I couldn't do it. At this point while I was aware that I wasn't as good at PE as other people I was quite unaware of how clumsy I really was. I was finally happy at school but at the end of year 6 it was all to change as my friends were all going to the local secondary school and I was going to a different school.

At my new school I had to make new friends. While I made some I found it very difficult and the bullying started again. In my own head it felt ten times worse, everywhere I went it felt like people were pointing and laughing at me or talking about me. I cried a lot at school back then which probably didn't help matters. On the academic side of school I was doing fine, although I was easily bored of the lessons we were doing as it was in mixed abilities classes so the work for me was easy. In PE however I struggled and my co-ordination problems were noticed once again. The school said they were going to refer me to someone but they never did so we went through my GP instead and I got referred to a paediatrician.

When I went to see the paediatrician I got asked lots of questions. I had my eyes checked, had to walk heel-to-toe and other things like that. They asked about developmental milestones which to her surprise I had reached early, I talked at 7 months and walked at 11 months. After what seemed like ages, it was a half hour long appointment which is the most time I had ever spent at a medical appointment, she decided I had dyspraxia and that she was going to send a letter to my school asking them to write about my problems so I could get referred to occupation therapy. Now you would think that would be the end of the struggle but no (sorry i'm probably boring you now).

My school never sent that letter. My mum rang and complained and also spoke to the occupational therapy clinic. They sent my school an abc form (i think that's what they're called) and my school filled it in but sent it to the wrong place. That was about 6-9 months ago. Recently my mum got another form and i took it to school in an envelope with the right address on it and a reply slip for the clinic. It got filled in and we received the reply slip a few weeks ago saying I'd been referred to the occupational therapist. Now I just need to get through the joy that is the NHS waiting list but finally we're getting somewhere.

Finally my apologies for boring you and I think I probably missed some stuff out there but it would have become far far far too long if I'd added them in. I feel better now I've written that.
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Postby parnassus » Mon Apr 04, 2005 8:14 am

Hello Jenny,

Is your dyspraxia confined to co-ordination difficulties, or do you have the learning differences as well - disorganisation, poor short-term memory, all that? I know that there are some people who have Developmental Co-ordination Disorder, but none of the learning differences attributed to dyspraxia.
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Postby ~Jenny~ » Mon Apr 04, 2005 10:26 am

I do have some problems with disorganisation but these aren't that noticable as I've found ways of getting round it. I also do have quite poor short term memory at times and sometimes forget why I've done things and what I was meant to be doing next. Does anyone else have problems with people not believing that you have poor short term memory because you have really good long term memory?
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