waiting for a referral for DD with aspergers

[briarrose]

Hi there,

My doc has just referred my daughter for aspergers, i'm convinced she has it.

She is 10 years old and very bright, and I haven't told her anything about the referral yet, what i'm worried about is the referral itself. I think it will be really damaging for her for me to sit with a specialist and reel off a list of problem behaviour in front of her. As yet I don't know who she'll be referred to so I can't speak to them about my concerns. I know she will have to meet them to be assessed, i'm not worried about that, i'll be able to put it to her in a sensitive way i'm sure. But like I say, I think it could be damaging for her to hear of these things that she does as being odd or wrong. Has anybody else felt like this? What is the procedure? will that part of the process be kept seperate from her? I think if that was the only way to do things, to discuss it all infront of her then I would actually back out of the referral I feel that strongly about it

[MumRum]

Hi briarrose, we went through the same thing with my DD who is now 11. We wrote all our concerns down and gave it to the receptionist when we booked in, so that the dr could read it through. There must be nothing worse than saying negative things in front of your kids... good luck....

[twocutedarlings]

Hi Briarrose,

Im so glad your GP has taken you seriously.

As regards to your DDs assessemnt you most certainly will not be expected to do your side of the interview infront of her. For us it was differant my DD was only 4 at the time and there was a playworker (as they needed to observe her play skills) in with us the whole time.

I would probably be a good idea to post this on the special needs board too, as there are people there that have had older DCs having ASD assessments.

Also take a look at the NAS website as there is alot of information there.

HTH

[briarrose]

cheers, was looking for a good website.

That's a good idea about the notes, I was going to do that to clarify my own thinking anyway, but I guess giving it to them would be just as productive.

I'm bracing myself for a battle because I have heard how tough it can be to get statemented. Fortunately when I have made up my mind about something they I very rarely get shouted down about it. I know in my heart that that is the problem.

Doc was very good about it, I made sure I saw him as he is so very understanding. Saw school SENCo and CAMHS drop in, they both agreed and supported my decision.

DD is not a problem at school, which is part of the problem - she is so withdrawm and shy that she just looks like she is a quiet child, plus she has always been in top sets at school, and kids that do well academically rarely get analysed for problems. I was therefore relieved that they took me seriously, I had my trusty list with me then anyway, so I could reel off all the odd behaviour, they couldn't overlook it then.

I just hope that this referral isn't damaging for her, at such a delicate age too, she's started showing signs of puberty, aaargh!

[catok]

DS found the assessment very long - but he went with play therapist while we talked with consultant. I think him lining up all the zoo animals in alphabetical order told them something!!

[twocutedarlings]

You may find that she doesnt need a statement if she has got this far in her education without one. Just take one step at a time. Have you looked into secondry schools yet?

I think you will find that by people around her having a better understanding of how she feels will help her alot.

Simple things like helping her develop her social skills, and finding a routine that she is happy with.

And stop beating yourself up about not doing something up sooner, AS is not easy to pick up on in girls . Especially as your DD is shy. My DD is not shy atall i think that why she came across as differant.

[briarrose]

That's really what i'm aiming at, just having people who can understand her and support her in the way she needs.

IKWYM about the statement, but I am worried about senior school, and I want to be able to support my comments with a piece of paper to get taken more seriously by the teachers. She's coming into puberty and that in itself is tough isn't it.

TBH i'm not sure what I want from it, other than to make DD's life easier. This past week, since I have really felt she has aspergers I have acted as such and it has made my life, and hers a zillion times easier, because now I can see that she can't help her behaviour, so I accept it more and facilitated it more.

catok I had to laugh at the alphabetical animals, was looking through some family pics other day, when all this aspergers was going through my mind, and came across some photos DD had got me to take of her toys lined up on the bedroom floor, and arranged in a cirlce. I must say I did gasp!!!

[Peachy]

Actuallyw e were expected to do the chat in front of a Paed with no playworker or anything (DS1 was 6), BUT fortuantely dh was there to distract and frankly DS1 didntc are enough to listen in. Got it again with ds3 next week but he cant understand anyhow.

So the letter idea sounds really good to me

[briarrose]

Really? Can't they see how damaging that would be? Even they should know that there's so many degrees of this condition that some children may indeed be in another world, some, like my DD are acutely aware of when people are talking about them. I was going to take MIL along because she has already been through it, I think I may end up having a family day out, because I may also need someone else to act as a distraction!

[Pwsimerimew]

Hi there - new here today so very interested in other parents' experiences. I just had to mention that my 9yr old son who's been diagnosed with mild aspergers since 6yrs old is fine at home- loveable, happy, follows rules, can cope with family life, has no routines that we must follow - a "normal" boy. At school - we do not recognise the boy they describe him as. I do think that the school believes that we're burring our heads in the sand! Any way, good luck and don't give up.

[Unfitmother]

My DH took DS out whilst I described his symptoms. Is someone going with you?

[Sheva]

When i took my son to be diagnosed the thought of talking about him with him there made me feel sick but to a certain extent you become their voice if they are introvert AS (if they are extrovert AS, it speaks for itself more rather than just shy and the health expert can recognise it more easily) ; now when i go to doctor, dentist or anything i've become adept at slipping in that he is AS (not in front of him) if they expect him to answer or if he is neglecting his teeth for example. It is important to get diagnosed, my son has no statement but struggled at secondary with no diagnosis as it was needed to put together a plan for teachers to put into action and if he's stressed i have a hotline to SENCO and they sort it. He is also very bright and is doing much better now. Good luck

[Unfitmother]

DH took DS out when we say the paediatrician but he was unhappy about that.
Will write something down together before we see the pysch later.