RE: Have You A Story you like to share
Dear Clare,
I understand what you are saying... how the diagnosis made you so angry. We always hope for some kind of diagnosis. At least then we can call it something and perhaps it can be treated and it's not all in our head... But, when the diagnosis comes and it is worse than you possibly thought, and whether it is or not, it doesn't do you a lot of good... anger is, as far as I'm concerned, a natural response.
Your positive sides are very good. My son also has a high IQ and a near-photographic memory (it used to be photographic all the way until he was involved in a car accident and he had a head injury).
I wish you all the best in your life.
TEMA
RE: Have You A Story you like to share
Hi All
Ok my story.
i am a 38 year old mother of 2 beautiful daughters age 11 nad 10 the youngest having high functioning Autism.
She was born 9 weeks prem and had a big fight on her hands for the 1st 10weeks of her life but being a strong little girl she amazed us all and still does every day of her life.
We was told that our little angel would never crawl-she did, would never walk- she runs now, would never talk- but she can.
She was always a little different to other babies her age but that could have been for any number of reasons but she did some things from around the age of 4 which made us look into Autism. In nursery she had a tiny space about 3ft square which she would go mad if anyone went in it. At dinner time her dinner would be cold by the time she had positioned and repositioned her cup/plate chair ect. And she would sit for hours watching and rewinding a video but it would be the same part of the video she would watch over and over and over again.
(I missing lots out now or I will be here all night!)
After a long battle it was confirmed that she is Autistic, shas SLD and challenging behaviour. She has been attending a small special needs school and each year she is improving. She gets strange habits which can last for weeks or months or carry on for what seems like forever. We have had not wanting to wear any clothes(some Autistic people can not stand the feel of certain fabrics so much so its painfull for them) refusing to eat unless it was sweetcorn or blue crisps(cheeseand onion), flushing the toilet every 10 mins, putting things in her mouth, kicking, biting, punching,screaming not sleeping for 72hrs at a time. Certain shops we can not go in or she will have a sensory over load(too much noise and visual things going on at onec)
Every day is a new day you never know how she is going to be when she gets up (if she has slept at all). She isnt violent to others any more but bites her own hand when stressed, or unable to make her needs known or just plain excited, so much so she has damaged her skin.
But dispite all of the things i have mentioned (there is a lot more) if some one said Sharon here is a pill give this to yur daughter and she will be like any other 10year old. Would I give it to her
Answer NO
She is Autistic, Autisim is a part of her and who she is and without it she would not be my little girl, the little girl that make us cry, scream and laugh every day
RE: Have You A Story you like to share
What a heartwarming story...! Your little girl is certainly in the right hands...
I remember asking my Mom, because both my kids have problems, how come this has happened to me? She said - Who else would you want them to go to?
Well, she's right, of course.
I also remember being asked at one of the many hospitals my son visited (learning disabilities) what I wanted changed about my son. I said - nothing, I like him the way he is. And I see that is your answer too...
The truth of the matter is - our children are our children and we love them... on the other hand, if my child would find the better place because of a pill that would make everything right for him, I'd jump at the chance.
As it is, he has surpassed the grim diagnosis of 25 years ago. He can read. He can work. He can live alone in his own place. He's a great cook, concentrating on organic food - allergies are what made him as the way he was as a child. He's gone on to conquer more frontiers than anyone thought possible. When he asked me if I thought he could do it, I always had the same answer - if you want it badly enough, you will find a way - you always do... and he did and does too.
TEMA
RE: Have You A Story you like to share
Hi,
My Daughter, Amy is now 16 and has special needs due to what is still an un-diagnosed condition.
Our Daughter's disabilitypresents a number of problems. Amy is unable to use speech to communicate. Sheneeds help to wash,dress and undress, use the toilet, clean her teeth etc.
She also has mobility problems, physically, because she is unsteady due to malformed feet, and in terms of her understanding of the dangers posed by traffic, crowds, getting lost, ascending and descending stairs.
She is therefore reliant on others for all of her needs and requires round the clock supervision within a caring environment.
My Wifeand I have resolved to care for Amy until such time that, due to illness or old age, we are no longer able to do so.
In spite of her problems Amy is a happy and good humored child. She is friendly and usually brings the best out in others.
Generally we have had a lot of support from the schools Amy has attended, apart from her first two years at senior school when we feel she was mistreated. That is in the past now and she has enjoyed her time at school since.
Being 'un-diagnosed' does tend to mean that the support groups that are out there for downs syndrome, cerebral palsy, autism etc are not available for us. We have sort of muddled through on our own to some extent.
Nevertheless, we manage and it means we still get to go on fair rides and play sand castles on the beach and stuff. She loves swimming and horse riding for the disabled so she has a fairly busy life. And so do we 🙂
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