Here some suggested organisations that offer expert advice on SN.
Can someone please talk to me? DS3 may have ASD, just found out.(13 Posts)
It's not come a huge surprise, i have had concerns for a while, but to hear the doctor saything that i was right, that he probably has a form of autism has shocked me somewhat.
DS3 is 21 months old. He only started walking a few weeks ago, and has already been diagnosed with low tone in his hips, knees and ankles. He's a very bad sleeper, often waking for the day in the early hours. He absolutely hates getting dirty or messy, and bathtime is a huge, huge battle - he hates being in water. He'll only eat certain things, and can't tolerate any changes. He's taken to hurting himself when he's frustrated or angry or upset - he'll pull his hair out or bite himself. He likes to line things up, cars, bricks, books and get immensely upset if you move something he'll have to start again. He can't cope with any change in routine, he'll scream and scream if we go somewhere we don't usually go. He only has three of four words and communicates mainly by pointing and screaming.
But, saying that, he's a lovely little boy, his eye contact is ok if he knows you - if he doesn't he won't look at you. If he hurts himself, he's happy to let me comfort him. In general he's a happy chappy who giggles and smiles lots.
He's been assessed a couple of times, and been seen by the MDT, and is waiting for OT, physio, a referral to a sleep clinic and SALT.
The pead today said that she'd like him to be assessed for autism, and is referring him to a SN nursery. He's also to have more blood tests done. He had some done a little while ago and a thyroid test came up a little high, so the pead wants it repeated just to make sure that he wasn't cooking an infection or something when it was done.
She also wants him tested for Fragile X syndrome. Has anyone any experience of this?
I feel better for just having written this down, but i'll admit that my heads in a bit of a spin. I'm not sure how i feel, one minute i'm upset, the next i feel relieved. I just dont know.
Any words of wisdom or advice would be very much appreciated.
I didn't want you read and ignored, I'm sure someone who knows will be along shortly!
AFAIK, Fragile X is a chromosome abnormality (on the X chromosome) which can cause Autistic-like behaviour?
Some info here of the reliable non-panic-inducing variety
My daughter was diagnosed with autism when she was three. I have never felt so awful in my life. My reaction was to try to do everything at once, and I then got very upset when there were waiting lists, or no services or whatever. With hindsight, I should have tried to relax & take things slowly, but hindsight is a wonderful thing!
Fragile X is pretty rare I think. It is routine to suggest a blood test for it when autism is diagnosed. I have not yet had my daughter tested, she is eight now. The paed was ok with this as there were no other indications that it might be the cause. If you are concerned, contact the clinic where your son was diagnosed and talk to them about it. They will explain further, and may even be happy for you put it off for a while if you feel it will be too much of a trauma.
My daughter's tantrums and insecurities have lessened hugely as she has got older, and her language is improving slowly. She attends an autism only school now, but went to mainstream nursery and reception class. She is very happy in her present school, where she is certain of her routine. i'm sure your son will have a good start in a nursery geared to his needs.
I found it really helpful to talk to other parents. Is there an NAS branch near you? or a support group? Contact a Family are great too, if there is branch near you. The NAS and CAF websites are also helpful.
It sounds as though you are getting the right help & intervention, which is good.
This is a really tough time I know, and I send you and your family all the good wishes and good thoughts I can muster. You sound as though you're doing all the right things for you son. Remember to look after yourself too.
You might also be able to get portage - a specialist play worker who will come to see you both at home. Look on council website.
DS was diagnosed at 2.5. It is a shock but knowing early means the prospects of a good outcome is much higher and great you will get access to a SN nursery - that will provide specialist advice even if you are stuck on waiting lists for a while.
NAS website and Contact a Family are good for resources including what help you might be entitled to.
Hanen books eg More than Words are a good place to start - cheapest place is usually Winslow but google to check
He sounds lovely and adorable
It's pretty standard to check for Frag X when an autism dx is suspected, but usually it just rules it out so don't worry too much about that.
Whatever happens in the future you're in the most difficult time now - it is usually a bit of an emotional roller coaster (understatement)- but it does get better (ds1 is 12 now and severely autistic, non verbal with severe learning disabilities - 90% of the time he's a delight, and yes although it can be tough, he's made our lives a lot better and more rewarding than they would otherwise have been as well - which I wouldn't have predicted when I was in your position).
My one bit of advice is to try and seek out friends in the same situation as you - it makes such a huge difference to have someone who totally gets it. My friends with SN kids saved my sanity I think and they're always happy to listen/swap stories.
Thank you all. It helps to know that there are others out there who have been through this
The Dr discussed portage with me and said that it was hugely unlikely we would be offered it as there only one part time worker here and she is immensely busy, so she thought the SN nursery would be better for him. So were just waiting for the nursery to contact us now to arrange a home visit. My elder son went to this nursery years ago, as he had developmental delay resulting from his prematurity, so i know that he'll be well looked after and am confident his needs will be met there.
It's good to know that Fragile X is routinely tested for, and at the moment not something i should be overly concerned about - phew.
Thanks for the suggestions to seek out NAS and CAF - i'll get onto that later this week.
Bump - anyone else have wise words to impart?
My DS was diagnosed at 2.1 so I know how you are feeling.
I agree with the More Than Words. I dont know what area you live in or whether your LA offer the course, but even of they dont the book (by Hanen) is worth the price tag (which is expensive). Its the most helpful thing I have done with DS.
Try and find a support group - I dont think I would have survived without mine.
DS has Aspergers but wasn't diagnosed until age 6.
One of the best pieces of advice I got was that above all you need to remember whatever label they give you he is still the same child that you love dearly and who loves you. NOTHING about that has changed.
Like DazyKat I remember reading everything I could get my hands on and then wanting to do everything all at once to help - trying to be very practical about it. It doesn't work. You won't be able to assimilate it all and change everything you do all at once. you need to take it slowly. Also you need to find out what kind of help is available and keep asking for it. It doesn't seem to be automatically offered. I heard good things about Early Bird - but DS was too old for that.
Also so many things change as they get older and you learn which strategies work and which don't. So many of the things you describe sound familiar.
voidka - theres a long SALT waiting list, but when he goes to the SN nursery, he'll have weekly SALT.
I'm just off to do the school run but will read replies properly later.
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