Newbies with diagnosis - woo hoo!

[Sammysnake]

Hi all, I'm Sam. Sorry this has turned into a bit of an essay but I feel I need to get it all out there now I've finally been given the go ahead - it'll make sense soon . My 9-year-old daughter was given a clear diagnosis on Thursday of AS and we are both over-the-moon! I know it sounds weird but when the Paediatrician explained it to her (in the words I would have chosen incidentally) she immediately looked relieved and relaxed. She's been asking a lot of questions lately about how she fits in the world and why she's here often saying she feels like the least important person in the world (despite being an only child and the centre of her extended family's world). Suddenly a lot of things made sense for her and she now feels special and important.

 

I've known since she was born there was something 'unique' about her in terms of her gross motor skills and social and emotional abilities and have suspected AS was the explanation for about three years after reading a lot, meeting other children at various points on the spectrum and asking lots of questions. My daughter saw the doctor when she was four at the suggestion of her pre-school SENCo but he said there was very mild DCD which was improving with support and no sign of ASD. She was discharged from any follow up. Basically since then I've felt that no one else believed me when I said there were issues. My husband has told me to my face lots of times that I was simply an overprotective mum and our daughter needed to just grow up, toughen up and get on with it (this is from about the age of 2!). I gave her Year 1 teacher a three page essay describing the areas she struggled with and suggesting simple strategies to support her and got the distinct impression she also thought I was way overprotective as she smiled sweetly and ignored what was written! So, I did what many mums do - I remembered that I know my daughter better than anyone else, read all the books and implemented all the strategies I could on my own, got a job at the school so I could learn the routines and have a better idea of what I could do from home to support her in school and so I could get an idea from a distance what sort of things she was facing day to day (I'm in a different year group and usually manage to keep out of her way).

 

Anyhow, she's now entered Year 4 with a teacher that I desperately prayed she would get because she's soooo fantastic - really caring and so easy to talk to. Within a week she seemed to understand my daughter, was talking her down when she was loudly distressed in exactly the way I do and was implementing strategies left right and centre to support her in all areas of school life. There is a boy in the class with AS, severe behavioural issues and learning difficulties which means there has been a lot of input into his needs from outside agencies and the teacher has done loads of research. This has really helped her to identify my daughter's needs too. She got the ball rolling so we began having proper review meetings and she asked if the school would request a diagnosis again.

 

This time I was better prepared to meet the same doctor as five years before. School sent review meeting minutes and a social and emotional checklist whilst I sent loads of info on the support strategies I've been employing over the years, my picture of her strengths and weaknesses and descriptions of how she plays with others. The doctor was lovely - last time he met my daughter for 5 minutes - this time he talked to her for an hour. He asked me what I thought it was - I said AS and explained why, he asked how I knew to do all the things I do to support her so I told him. Then he said it it clearly AS, apologised that he'd missed it five years ago and said I was doing everything right which thankfully meant she had lost no time despite him making a big mistake! I was really surprised that he was so upfront and humble. He then told my daughter she has AS and explained it all to her, answering her questions. When we returned to school she told everyone she could find that she has AS and has asked her class teacher to explain it to the other kids!

 

School leant us the book 'Can I Tell You About Asperger Syndrome?: A Guide for Friends and Family' by Jude Welton and Jane Telford which was excellent. My daughter could clearly explain to me which bits are relevant to her and tell me how they make her feel - I'm going to read it to the grandparents tomorrow because I think it will really help them to understand too. Dad hasn't said much. The doctor offered to visit the house to explain things to him but he said 'that's OK, I know everything I need to about Asperger's'. Maybe he'll now begin to accept it and later understand it because we have a proper diagnosis now.

 

Anyway, that's all for now. Nothing will change drastically at school except they're going to bring in the ASD support team to observe her in situ and all the opther support will continue but I just feel so light, like I'm no longer constantly trying to justify my actions. I don't have to fight anyone anymore, at least not until secondary school potentially but I've got a few years to rest before then!

 

Sorry again it's so long - I promise any future posts will be much shorter! Thanks for reading if you've reached the end without snoozing off, Sam

Edited March 13, 2010 by Sammysnake

[Tally]

Hello, and welcome to the forum.

 

Congratulations on getting your daughter's diagnosis. It must be a big relief to finally have it on record. It sounds like your daughter was ready to know why she is different and is pleased to understand.

[smiley1590]

i have DCD ( dyspraxia) my mum had to fight as SENCO and paedtrician had private cosy chats behind my parents back saying that i didn't show any of the signs really when i ticked all boxes and more the more i now know and found out years later was AS that they didn't pick up on surely they could see more than DCD there in background pathetic and rude in my eyes when found out i was so angry annoyed my mum labelled overbearing and overprotective and smothering they pulled me round from pillar to post not really supporting or helping though making matters worse and more awakard and complicated thanks to parents pushing for official diagnosis of DCD always felt 'different' weird on 'outside of world and box' of other children my peers i scared and afraid didn't socialise adults where my only source of really comfort and reassurance and guidance but even then let me down which so frustrating ......

 

they judged my parents for doing the right thing for me seeking answers support etc doors where really shut in their faces like you was saying with your daughter me and my parents became lost within a crowd didn't listen though my mum made her points sharp and clear enough to be heard she stood up for what she believed in i didn't feel i 'fitted in' anywhere felt confused from young age i can remember this and does stick with you forever it never go away they robbed me of a good education

 

so i can relate to this situation personally it lowers your self -esteem and takes to come from people don't seem to realise what damage they do and what they leave behind in wreckage it hurtful and no one should be made feel this way it's awful dreadful wrong shouldn't be justified whatever way you at it i was a little girl blamed for situation i had no control over no say so in and still made to feel bad like it was my fault deep down i knew just couldn't explain into words ....

 

so pleased and glad for you and your daughters sake you have an official diagnosis to now go on and get some understanding answers from and linking some jigsaw pieces together finally after all time fighting makes you tired and wor down your the parents you know us best your children why people think they know better and different makes me mad crazy half time all about saving services and resources ......

 

good luck with everything

take care

 

XKLX

 

 

[smiley1590]

glad she got an earlish official diagnosis of AS i had to go through alot pain heartache painful uncomfortable time process so hard going mentally/emotionally made my MH probs play up worse ( depression and self harm mainly also anxiety) only due to my MH probs and things not quite adding up for years on end that went docs referred to general counsellor and from there CAMHS assessed and officially diagnosed ..... at 14 years old all round puberty hormones the works i know there no great time to have to go through it the earlier the better it is for everyone involved less messy and sticky complex mess it can get into .....

[Kathryn]

Welcome to the forum. Having a supportive and understanding teacher makes all the difference, and the doc sounds great too. Hope the grandparents understand but even if they don't it's more important that they carry on accepting and loving your daughter as she is.

 

K x

[Sammysnake]

Hi Smiley and Kathryn, thanks for replying. I've dipped in and out of this forum a few times over the past year but didn't want to go too far down this route until I was sure - hence joining the minute we got the diagnosis!

 

Smiley I'm so sorry you are suffering so much. I really hope things change for you and that something happens to make sure you get the right support. Hormones are a rubbish thing to have at the best of times but tied in with everything else you are struggling with, it must be a nightmare. Some months I get very hormonal and then I get confused, forgetful, unable to think straight, clumsy, very irritable and sometimes really angry too. Vit B helps a lot and at least with me I know it will go away a few days later. I really don't understand why God made hormones - or slugs for that matter (sorry, random thought ).

 

Kathryn, I just come back from Mum-in-Law's and we had a really good chat about B and her needs. She really wants to understand. She completely believes me and has always said that I know B best but like she said, she never sees any of B's struggles as she is always relaxed and happy in the family environment. She doesn't realise that she already treats Beth slightly differently as she unconsciously copies the way I interact with her. A couple of weeks ago we were planning a night out and B was going to stay overnight with nanny and grandad. We ended up being ill and didn't go but nanny said Beth could still come and stay 'because she doesn't like it if things get changed'.

 

I've leant her the book from school 'Can I Tell You About Asperger Syndrome?: A Guide for Friends and Family' and she said 'great', she was going to ask if I could get her something. The account in that book is just like my daughter talking about herself; there are according to B, only a few things that don't relate to her. I think I might buy a few copies and give them to everyone who deals with her . I know it's early days but I am so impressed with the way B has taken this all on board. At a science fair yesterday a biologist was chatting to B and she really politely stopped him and said, "Excuse me sir but you are speaking very quickly. I have AS and I find it hard to understand what people are saying when they speak very quickly so please can you slow down." The man apologised and began speaking at a regular pace - he was happy that she was interested in what he was saying and she was happy to hear about him researching dung beetles in Borneo! I know she said that because that's how 'Adam' in the book explains his experiences. How cool is that!

[emmasmum]

Hi there,

I just wanted to say well done for following your instincts and getting a diagnosis.

My daughter followed a similar route - the paediatrician said she had dyspraxia when she saw her at 6 but the physio and OT she referred her to disagreed. The paediatrician did mention aspergers at one point but immediately discounted it because she said my daughter was too social.

I suspected Emma might have ADD but school disagreed, preferring to believe that she was lazy, a daydreamer - they maintained she had plenty of friends even though she told me she spent most lunchtimes alone. Then I suspected auditory processing disorder, but it turned out Emma has auditory neuropathy which was diagnosed when she was 10, so after that all her social problems were put down to that.

Everyone said she would get better as she got older - summer birthday - immature - etc etc

When she was 13 she had started to refuse school and I requested a referral to CAMHS. I was also advised to request a further educational pyschology assessment. The EP spoke to Emma for about 40 mins and said she was highly unlikely to have Aspergers. When we finally got to see the Psychiatrist at age 14 she said she was highly likely to have it and was prepared to diagnose her just on the basis of the evidence I had supplied and from speaking to Emma. I insisted on an assessment though and she met all the diagnosit criteria.

I am so angry with the primary school, the paediatrician and the educational psychology service. If it's not their area of expertise they need to say that not just deny there's a problem! Emma is now suffering from depression, although she felt the same relief as your daughter did when she got the diagnosis.

Despite being on the 73rd centile cognitively at age 6 she is now predicted to get mainly Ds and a few Cs at GCSE.

I'm so glad you've got a diagnosis in time to put things in place for your daughter.

Good luck!

 

Carol

[Sarah Perry]

That's great that you've got an official diagnosis, well done! x