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possible ASD mummy here ....feel a bit lost !!

(6 Posts)
mummytolucasandkatie Mon 06-May-13 09:06:21

Hello all, I'm new to this but looking to chat to people in similar situation as myself . I am a 23 year old mummy and have a 3+5month old son and a little girl who is one year.

Currently waiting a children's disability service appointment or cids for short for my boy !? Saw a community peadiatric who has referred us under suspected ASD .

I just feel a bit alone, and want it to hurry up when I know it could be a long process so he can get any help and support he nneeds.

Its nothing to severe at the moment he talks although in therapy, he uses strange phrases for things. Can't and won't listen to anyone else really its all about him and his trains and what he's doing. He is very very unpredictable in social situations hitting out and pusbing. He is oversensitive to sound and heat but under sensitive to touch but I mean falling over and likes you to really squeeze hard when you hug him. On the report it said he has=
Developmental delay
Social,emotional and behavioural difficulties
Language delay
Attention deficit
And works pureley to his own agenda

I'm just worried that when o go the centre they will dismiss it or won't see his behaviours that's my main concern ... I know its unlikely but if you saw him in the street you would probably think he's a hyperactive child and miss behaving .

Has anybody else felt the same ????

Sorry for the long post and thanks for reading

=)

StarlightMcKenzie Mon 06-May-13 12:31:17

All your worries are perfectly normal, including the worry about whether they will see what you see or not.

You can shorten the dx process if you can afford to get a private assessement (sorry sad).

This is the worst bit. Is he? Isn't he? If he is WHERE is he? Does that mean he'll ever have friends? Will he get GCSEs? Will he live independently etc. It's fecking awful and my heart goes out to all new parents that join us over here.

A couple of things to get control over things.
Firstly, video any behaviour (or record them on a log) that you are concerned about.

Secondly, start another log. On this one you need to log every single contact, phone, email, letter and importantly, conversations with any professional, with a quote if possible. Even if you don't get through and leave a message it is helpful on the 4th attempt to list the date and times of the times you have left messages but not been responded to. People take you more seriously if they know you are recording their promises and attempts at communication.

If anyone tells you something that sounds like a promise i.e. 'The waiting list is 6 months long for x', send them a letter immediately asking them to confirm that they did indeed inform you of this. This stops appointments dragging on and you from being fobbed off.

Thirdly, get yourself a copy of Hanen More Than Words book, follow it and get cracking. Don't wait for the professionals to tell you what to do, or do much. They won't (sorry again).

If this is far too much information in one go, then start your log as I mentioned and put this information on it (plus any links, contacts to investigate later when you have time) so that you don't lose the information but don't panic either.

Once again, I'm sorry you're going though this, and hope that the next steps are fast and productive.

Dinkysmummy Mon 06-May-13 14:21:13

I am going through the ASD/PDA dx route with my 5 yr old. It is rather scary and pretty shite and long... Hopefully it will be worth it in the long run as it will help signpost and access support (which no doubt will have to be fought for).

There are lots of helpful mums here, and lots of great posts and advice. Keep posting and I agree with star... I have 3 months of journals here.
(It helped us get DLA without a dx yet which is so helpful in terms of activities she can now go on as there is no way she could access mainstream activities)

Hopefully it will all go smoothly for you... Keep your chin up on those hard days, flowers

PolterGoose Mon 06-May-13 14:22:48

Message withdrawn at poster's request.

salondon Mon 06-May-13 17:16:06

Starlight said it.

It's a very difficult time. For now assume the diagnosis and start the interventions that you can afford and your child will accept.

mummytolucasandkatie Mon 06-May-13 18:55:14

Thanks all =) yeah I am happy she saw him and I thought he was pretty good that day ! I just worry as like I know people and family when I've said likely an ASD like look back at him and say really ? But there is so much more to it than what people see isn't there the quirks and certain behaviours are in there hundreds !!! I keep a daily diary as I forget things ect! Glad my worries are normal just always think them all I think about most days really !

Forgot to say obvious communication and social difficulties , but I know bes young but id say he's higher functioning end so may be harder to pin point ?? I don't know I think everything !! Haha seems like a very supportive place , deffinatley staying because people say they understand amdn know but they don't really .

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