Best bit of advice for newly dx

[Lynden]

I just wondered what the best advice you could give to us who have young kids who are newly diagnosed with ASD is. Hopefully soon we'll have our own nuggets of wisdom to pass on too!

 

Lynne x

[lil_me]

Follow your heart, never be bullied into anything by proffesionals. Once you have the diagnosis fight for what services they need and deserve, then get on with your lives. Regardless to the dx they are still your child.

[mossgrove]

The main thing to remember immediately after the diagnosis is that you still have the same child you did before he/she was diagnosed. You child hasn't been taken away and replaced by an autistic one but it can feel like that in the early days.

 

We spent a couple of weeks parenting J 'by the book' post diagnosis doing only the things the experts in books said we should do before sanity returned and we regained the confidence to trust our instincts again.

 

The other great piece of advice we had was to take it 'one chunk at a time'. Once you hear the news that your child has a lifelong condition, it's really easy to send yourself into overwhelm and start worrying about will they marry, will they go to college?, what about when I'm not there any more?, what about work? and a host of other issues.

 

Deal with what you have to deal with now, in manageable chunks. Worry about the other stiuff when you need to or you have regained your composure.

 

Simon

Edited October 21, 2005 by mossgrove

[LizK]

They are the same child regardless of the label given. Think it's easy to see them as a diagnosis or to become overwhelmed by it all and lose track of the child underneath

 

Sometimes you need to immerse yourself in 'special needsdom' to get things done but sometimes you need have a break practically or emotionally from it, focus on the positives and just get on with normal family life

 

Thanks for the email btw

 

Liz x

[KarenT]

I take my lead from J - he's my best adviser for what's right and what's not. A lot of the advice I've read I've taken one look at and known that it wouldn't work for J - I know his personality and understand what he'll cooperate with and what he won't. Sometimes it seems that everyone knows more about this condition than I do, but in truth they know about it in terms of their child, not mine, and ultimately I have to believe in myself that I know best in this situation.

 

Also, I've found it helps to forget about my own personal ideals - this is about HIM, not me and in many ways it's brought home to me how much of an individual he is. You see so many parents of NT children planning for their futures, oblivious to the fact that it just might not turn out that way. I've had that brought home to me very early on and I can see that nothing is certain. Live each day, do the best you can, try things out if you think they might work and don't feel like you're doing it wrong just because yours isn't the same as the kid in the book. I know that if I do what's best in the here and now I'm giving J the best chances for his future, but it doesn't pay to look too far ahead because it could all change tomorrow.

 

Karen

x

[Elanor]

Hi

 

My best advice is to give yourself time to get used to the diagnosis, and reduce your expectations of your child's behaviour. Living with a child with ASD is a long-term project - don't expect to achieve too much at once.

 

You might find this thread useful

 

http://www.asd-forum.org.uk/forum/index.ph...wtopic=497&st=0

 

Take care

 

Elanor

[Suze]

I read a couple of books from the library, I found those that wrote from the autistic persons point of view good as they gave me a good insight into how my son felt. A different perception to my own.

[Zemanski]

lots of good book threads in resources

 

Tony Attwood is a good starter - Aspergers syndrome, a guide for parents and professionals, I think

 

Zemanski

[Malika]

HI Laverty,

 

First things first don't panic yes really do your best as you probably did before DX but with more knowledge and understanding of the why of his behaviour but don't forget your child is your child no matter what, it is the love you have for him that will help him.

Learn about strategy but really to work things out it is a "one step at the time" and if it doe not work in one month give him 2 or 3 or 4,or more , patience is the best ingredient not always easy, but keep going this journey is a life time one, you have to spare some energy so learn to take things easy as well.

 

For the books yes Tony Atwood is a good start I like as well "A mind apart" from Peter Szatmari . and have a look at Wendy Lawson web site.

 

http://www.mugsy.org/wendy/index2.htm

 

Best of luck.

 

Malika.

[Minxygal]

If I had to give advice it would be that you haven't lost your child, in fact you've probably just found them. Remember that you have a right to all the thoughts that will be going through your head to start with and that most of us have had them with you. Autism is not a sentence for your child but it's an opportunity for you to take hold of your childs hand and show them enough love and understanding to help them discover their world and help them share it with us.