I'm Pi**ed off!

[TPeers]

Just got the post, in it was the detailed report from the Speach and Language Therapist on Pippa

Autistic Spectrum Disorder

Now what the hell do I do?

[piskieinboots]

b**ger hun I am sorry

Can I put you in touch with my pal Kathleen as suggested last time? Let me know.

((hugs))

[TPeers]

Sorry - I was having a bad half hour! I should probably never have posted. It's amazing what half and hour pottering in a greenhouse can do for ones perspective! I've known this was comming for ages - it's just seeing it in black and white.

However - yes please Suzie, if you would be so kind - I think I had better start doing my research and find out what the future is likely to hold!

Terry

[piskieinboots]

Just pm'd you her details - do email her, call or skype her

[Pootle]

I know its crappy news, but there is a plus side.

A friend of mine finally got a diagnosis of ASD for her son after several years of delayed development and missed signs (we could all see it - but could the health visitor?!). Once she managed to get a 'statement' for him he and the family as a whole have been able to access some of the most amazing help you can imagine and he has gone from being a very lonely and frustrated little boy with no ability to communicate to a lovely young chap who is helped to make the very best of his considerable talents. In fact within a month of starting at a special needs nursery he began speaking for the first time - it all came out in fully formed, perfect sentences - he'd clearly been taking everything in and just needed help to unlock something which blocked him from speaking.

He will always have difficulty 'fitting in' but the people now involved with his care are helping to ensure that he makes the most of the opportunities he has.

Please think about making contact with the people who can help you with the minefield ahead - my friend says that she has had more help from parents in similar situations than from the professionals in terms of finding out what services are available.

Hope that helps...
Hugs to you all

[TPeers]

Thanks Suzie - email in draft as I try and find the words I need!

Thanks Pootle - I think parents know more than the 'average' professional - if only because we LIVE with the problems!

[Seahorse]

One of my sons is ASD and I've been through the whole diagnosis/statementing thing. I certainly don't 'know it all' but I'm very happy to help with any advice, 'how it was for us' type stuff, or just an ear to listen. Please PM or email if I can help in any way.

[piskieinboots]

Kathleen asked me to give you this website as well Contact a Family - for families with disabled children: information on rare syndromes and disorders

[snuffer]

Asd

Hello TPeers The most important thing is good schooling. Don't let the LEA fob you off. You might have a real fight on your hands to get the best for your child.

My youngest son has a form of autism known as Aspergers Syndrome. After a lengthy battle we got him into a school of our choice. (I cannot over stress the importance of sticking to your guns and fighting for what you want. Don't let the penny pinching b******s grind you down)

My son is now in his second year at Nottingham University doing a four years masters degree in Physics. He left me behind years ago.

Stay positive and FIGHT.

[squashysu]

hi TPeers

I know the pain and the agony, my son has High Functioning Austim/Aspergers, i am still going through the pain at school and all the rubbish that goes with it.

I hope the letter below, helps with only a little of your pain x


WELCOME TO HOLLAND
by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

"Special children are given to special parents and if I can help in anyway, please just PM x

SS x

[Alice]

Just love her TPeers. And work for the best you can do for her - as you would for any child. Help her to be all she can be. Don't upset yourself , or her, over what she cannot be. I hope it all works out sweetly for you and your family. Alice x

[Paulottie]

Hi Terry

I am sorry for your news of a difficult road ahead. I think Alice, infact everyone, has very sound advice.

I certainly contacted a group that put me in touch with other families when Joel was born ( he has quite a rare syndrome) Even the word syndrome sent me into depression for a long time. We had agonising decisions on operations etc. spent days and weeks at hospitals all over the place for years...costs a fortune as well- even with the NHS. He really seems to be through the worst of it now...but the big thing is he is a really nice happy kid. He brings the whole family so much joy and laughter. I just found that difficult to see at the beginning (especially after the nurse at the scan painted an incorrect picture of me spoon-feeding him for life.)

My point being that, whilst I know little about it, the couple of autistic children I do know are just fantastic people, loving and enthusiastic. There are some dedicated and excellent professionals out there. You may probably ( I pray) find that things will not be as dark as they seem today. All children will have some problems one way or another. 'Special' (I like to think) children are often even more loveable and rewarding.

I know a superb speech therapist at Gr O Street and a friend teaches autistic children, if either of those contacts could help- let me know. Otherwise just know I understand a bit and am rooting for you.

[Flummery]

I have no experience to share, Terry, and no wise words I can back up with evidence, but I wish you all well, and I'm staggered by the number of lovely, caring peple there are here. If as many people in your real life as in your virtual life are rooting for you and your child, all will be as well as it possibly can. Best wishes,

Flum

[areia]

my son has aspergers still waiting on the dyslexia test ( been waiting 4 years now ) but what with moving and change of routine ive had to start from stratch again the education system still like to dismis all these "problems" kids have it can be sooo hard pestering them, the look from other parents in the playground because your child has whacked someone on an impulse the teachers say they have sorted the problem but the kids still tell there moms, took me ages to talk to one mom, it heart wrenching when my son says why cant such and such come round for tea, you can't say well there parents dont like you and dont want you playing with there child, i have one parent to understand now which is something. at the end of the day my son hugs me and tell me he loves me for which he recieves a big squeeze from me just makes me think with him and me we can conquer anything, i know it hard blimin work

[moggssue]

Terry - same as Flum, I can't help in any practical way - but am always here to help lighten the virtual load a little in any way I can. I wish you all the very best in the times ahead. Take good care xxx