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Advice For Anyone New To This

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#16 Lux


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Posted 02 December 2009 - 07:40 PM

I was going to say what kadenza said...trust your instincts

I will try to be more original by adding:

Don't see each report, assessment, meeting as a definitive opinion of your child. The professionals give you pieces of the puzzle, but you are the one who knows your child and must put the pieces of the puzzle together....you can see the bigger picture when others will only see parts. That is your strength as a parent.

Sorry- just want to add, I was referring to myself as unoriginal (for saying the same thing as someone else), not Kadenza :rolleyes:

#17 Mo


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Posted 02 December 2009 - 09:31 PM

Do not get too upset over friendships that are lost due to the inability of others to accept the differences in your family. Along the way you will meet new friends who will be there for you and undersand the way your life is.

Do not be too proud to ask for help. Do it before you are ill and forced to accept help.
SS are not the enemy and will not steal your child in the middle of the night. They may not be able to give you what you want but ask anyway and never do a frantic clean to let them see you are coping when you are trying to get help due to not coping ;)

#18 notbovered


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Posted 07 December 2009 - 10:26 PM

Try to remember that you have a child, not just a problem. Enjoy their childhood, even if it is not what you expected because Special Needs or not they still grow up in a flash. As parents of Special Needs children, we have to remember more than any-one that no-one knows what the future will bring and live in today.

Things will either get better or worse. If they're going to get better, you've something to look forward to. If they're going to get worse, be thankful for how they are now.



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Posted 10 December 2009 - 02:07 PM

Buy gin and wine in bulk quantities Posted Image

Definately !!!!!

#20 rainbow81


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Posted 25 December 2009 - 12:46 AM

Someone once said to me:

"No one cares about your child like you do. To them he is another report in a pile of other reports so push and ring and make a nuisance of yourself because you are the only one that can."

It made me feel so miserable and alone at the time but she was right! I am his spokesperson and only I can get him what he needs. I get it wrong a lot of the time because it's not in my nature to be pushy, but just make sure the doctors/therapists etc know your name from time to time if nothing else, and have sent you that report they promised.

Oh, and find out WHY you are going for these assessments, knowledge is indeed power.

#21 Ian Jordan

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Posted 25 December 2009 - 08:32 AM

Speaking as a professional - realise that professionals do not know what is best for your child - you do.

Professional training is usually very limited - we also have to take a journey (often against our training organisations). Do not overestimate professional knowledge - it is often much less than you imagine. The future....... ?

#22 Eggman


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Posted 25 December 2009 - 12:24 PM

I agree with your there Ian.

Professionals do not have a crystal ball and cannot predict the future.

Also never underestimate your kids.

James has done so many things I never thought possible and I no longer think he won't be able to do this or that.

My advice is to try not to have too many preconceived ideas.

#23 Erinath


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Posted 19 January 2010 - 02:45 PM

I agree with everything that's already been said (especially the importance of keeping records of everything), but also be aware that a diagnosis is something that to many, many people is an incredibly long drawn out process. In fact, so is trying to get a statement. You will need to develop the most astounding level of patience, but at the same time make sure you are very politely reminding the education authority/paediatrician that you won't be going away until this is sorted.

#24 Stiggy


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Posted 26 January 2010 - 06:00 PM

never stop fighting for your child ..

you know them best, if professionals say No and definately you think otherwise fight to the death , it will be the best thing you ever did for your child , and could save you/them a lot of heart ache as they grow older .

#25 caci


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Posted 26 January 2010 - 06:37 PM

Do not send the original of any report or letter to anyone - always keep the original and send a copy.

Never, ever give up - or accept second best.

Remember to say thank you to anyone who has helped you - you might need them again

Ask questions - and ask again until you get answers

NB - A BIG, BIG thank you to all on ASDf who have helped me

#26 Flower


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Posted 27 February 2010 - 08:48 PM

If you have a complaint it is best to write rather than phone as letters often are more affective than a phone call.

And like said before you know your child best. I know as a parent it can be very hard to talk about your child's problems and of course your own child is lovely, but to get help you have to think of the worst case scenario (for example when claiming DLA).

When you have a meeting with several professionals come prepared and know exactly what you want the outcome of this meeting to be. You can bring an advocate with you to these meeting there are charities out there that can help you.

And last of all you are never alone lots of us have been there before and will read your post and sent you encouraging messages back :)

#27 ~Mich~


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Posted 10 March 2010 - 01:19 AM

This thread is probably the most useful information i have come across yet! Im only new here and reading this thread has been more helpful than all the information ive read on the internet these past few months, trying to gain knowledge about whats up with my little girl!

xxx Thank you xxx

#28 Jill


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Posted 27 August 2010 - 02:45 PM

It's in my sig, because I truly believe this - do not worry what other people think.

At first it's a hard thing to do, but it does get easier as you get older and wiser (or do a Jill and just get grumpier lol).

You will get judged & you will be commented about but just ignore it. They're not worth it.

Or, if having a particularly bad day & someone really gets your goat, I find this works if said in a loud voice "do you have problems with all disabled children, or just mine?"

Oh, and whisky helps too. And not biting your nails after changing nappies. But both of these probably go without saying. ;)

#29 hel


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Posted 17 September 2010 - 12:00 PM

You are the person who knows your child best. Don't accept things that you know are wrong for your child. Remember as well that you are one of the best parents out there, you care enough about your child to try and get help and support for them.

There is some great advice on this thread, backs up so much of what I'm doing and reinforcing that I am right!

#30 jcmartin


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Posted 14 October 2010 - 04:19 PM

Love your child for who they are
Help your child to be all they can be
Help the schools to see what you see

(I've been told) not to apologise for your child's ASD.

Edited by jcmartin, 14 October 2010 - 04:20 PM.

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