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Going to dr tomorrow for referral for Aspergers for my son

(31 Posts)
buildingmycorestrength Thu 07-Feb-13 21:51:30

Hi all. After years of wondering about my now 8 yr old son, lots of anxiety about him (for multiple and not always rational reasons), reading books, enquiring about referrals, having low-level assessments by the school and being told by everyone that he may be a bit 'borderline' but there is nothing to worry about (inc friends with children with HFA), it is finally time to deal with this properly.

I am going to the (fantastic) doc tomorrow armed with my lists and notes from the brilliant chat I had with his teacher at today's parents' evening, and I'm going to present my case, and I will get a referral.

I may wait months for a diagnosis, but I will then know one way or another.

I could give you all a long list with symptoms, or whatever I should call it, quirks? Personality attributes? confused Anyway, not necessary just here. He is definitely not a very serious case but it is causing some problems at school and it won't get easier as he gets into adolescence.

I am so calm about this, it is a bit weird. I'm just totally certain it is time to sort this out.

Suffice to say, he isn't 'growing out of it'. Thanks for being there, all you kind people.

EllenJaneisstillnotmyname Thu 07-Feb-13 22:13:51

Well done, building. The first step has been made and hopefully it will lead to happier times for your DS and for you. Don't be surprised if you find yourself crying at unexpected moments. Stick around for support and empathy. smile

Anything already being done to support your DS at school? It shouldn't need a DX to get his needs supported.

mrsbaffled Thu 07-Feb-13 22:19:02

Well done. I went to the docs two months ago for the same for my 8.5 year old. The appt just came through for a month's time x

crazygal Thu 07-Feb-13 22:21:02

Hi
I've just had my diagnosis for my 8 yr old ds....
I went in to the pead office in nov...like you,waited months and months,well years really for this day!! and she wouldnt give me the dam diagnosis!!!!
she just kept saying,i just dont know,its either social comuniction disorder,or hfs,or aspergers...she said we will wait another yr!!!
i said no way!!! so she sent people into school to observe again...i got my diagnosis of aspergers,
like you i went into that office so strong!! i was ready for it,
i hope it all goes your way,good luck
can i ask you what his anxieties are please??

crazygal Thu 07-Feb-13 22:22:14

hfa! sorry

buildingmycorestrength Thu 07-Feb-13 22:28:37

Thank you all.

The school has been good, actually. He's had experienced, skilled teachers all the way along, who all seem able to accommodate him. And the SENCO at the school has been happy to chat with me and assist the teachers too. No complaints, really.

But it might not always be like that, right? So I need to get ready and arm myself/ourselves for a whole lifetime of change, disruption, stress, and other things he won't deal with well.

OK if I update about his anxieties tmw when I am on a keyboard? Tablet typing does my but a bit!

buildingmycorestrength Thu 07-Feb-13 22:29:38

My NUT I meant! See? smile

EllenJaneisstillnotmyname Thu 07-Feb-13 22:37:38

Did wonder what doing your but meant! grin

buildingmycorestrength Fri 08-Feb-13 11:24:16

Hi all. Having said I was calm, I did take a long time to get to sleep last night and was quite wobbly going in to the appointment.

But within about 5 minutes of my starting to pull out all my documentation, he said, 'I will refer you - just type up everything you have there, and I'll send a letter off with all your supporting evidence. It will take a long time as the service is overwhelmed, but let's get started.'

I was so relieved. And sad. But it would have been much worse if I've have had to really fight, I think.

If only all doctors (and schools) were as sensible and easy to deal with as mine.

Just about to type it all up so can provide a list of 'quirks' if that helps anyone. But the anxieties I referred to above were actually all mine - I have been terribly anxious about him for many reasons some of which were much more to do with my psychological history than reality. I'm much better now, so much more able to see what is likely/real/probable.

mrsbaffled Fri 08-Feb-13 11:47:51

Glad you got your referral. Hope it comes through sooner rather than later. You will be up and down while you wait. I am 2/3 through the wait now, and most of the time feel OK, but am on a downer today after a talk with my best friend yesterday. She can't see what the problem is and has got me doubting myself again (it comes and goes). I keep thinking it's all in my head and DS is fine. However, rationally I know it's not true as it's family that made me push for referral in the first place and school have totally backed me up, stating they would be willing to push for referral if it wasn't forthcoming - so they can obvioulsy see something too.

buildingmycorestrength Fri 08-Feb-13 12:48:12

Yes, I agree that some people don't get it. You just have to accept that, I think. When my friend (who is honestly brilliant) says things like. 'Yes, all children have their special needs' I just smile and try not remember that she is trying to be helpful, that I have said exactly the same thing to people in the past, and that there is no way she can know how untrue that is. Every child is special and unique, but it is not the same.

I was sort of waiting for someone to give me permission to push this through, and then realised of course no one is going to do that. I can't wait for a consensus opinion among my friends and family. No one knows him as well as I do. No one wants there to be a problem. No one else has to live with it (except my husband, who is finally on board, and his sister who is little).

Anyway, who knows what they will come back with. Although, typing up my long, long list of behaviours just now was quite an effort so they'd better bloody say something!

buildingmycorestrength Tue 12-Feb-13 11:22:00

Have just discovered that the boy my son considers her s best friend is having a birthday party today that my son wasn't invited to.

He never gets invited on play dates and has been invited to one birthday party this school year, that he couldn't go to due tho a holiday.

I always, always have to reinvite children who have been here before. He says, 'When can I go to X's house?' and so many of those don't happen.

rabbitstew Tue 12-Feb-13 11:48:12

That's a real shame about the "best friend." sad Mind you, I used to think it was always the children who didn't want to invite my ds1 back, until a couple of children in his class started asking him to ask me to invite them over - their parents just didn't do playdates, they merely accepted them!!!! The children concerned had no problems with the idea of playing with ds1. I concluded that invites to playdates are not a good indication of likeability - it's the strange excuses for a child not being able to come over to play at yours when invited that send the strongest message!
ps I think 8 is quite a good age to assess for mild aspergers - children who had other reasons for their behaviours and difficulties have normally started to grow out of them a bit, whereas those with ongoing problems become much more obvious.

buildingmycorestrength Tue 12-Feb-13 12:00:23

Thanks, rabbit. That helps, to think parents are probably usually just lazy.

And yes, that is why we have decided to pursue this now...there was a faint hope he might grow out of some things. He hasn't.

troutsprout Tue 12-Feb-13 12:03:23

Sorry about the lack of party invite. This was one of the things I found very hard when ds was at primary school.
Glad you got a referral with no messing about.
Good luck ... My boy is now rather a big boy now(15) but he started the process at a similar age to your boy. I hope it goes well for you both.

buildingmycorestrength Tue 12-Feb-13 12:44:02

Just cheekily asked a parent whose son has been here three times if my son could come over after half term. Sky did not fall in. grin

MissDuke Tue 12-Feb-13 21:57:34

I hope you don't have to wait too long, good luck xx

buildingmycorestrength Mon 01-Apr-13 17:15:05

Hello again...my son was off school for four days with tummy ache, looking wan and unwell. Dr was good and we eventually decided it was probably stress because of a school performance which he was anxious about. He hates anything like that.

The doc asked me whether we have heard anything since referral 6 weeks ago, and I said no. He then said, 'I'm ,much less worried about him now that I've seen him, as opposed to when I read everything in your letter.'

I was a bit shocked. Everything in the letter is still true. He's just been off school with physical manifestations of anxiety. Doc saw him for approx 10 min, during which time he was obv on best behaviour.

Doc will see him again after hols. He can't undo the referral can he? I want him seen by someone who knows what they are talking about!

Dinkysmummy Mon 01-Apr-13 17:42:25

I doubt they would 'undo' the referral, even if they could. The doc (however nice he may be) is not a developmental paed so can't tell you that your son does or doesn't have a problem with any certainty, that's why they have to refer to a specialist. Even if the doc wrote a letter to paed to say he saw him as wasnt overly concerned, the paed will still talk to school and do their own assessments.

Don't panic.

I hope all goes as smoothly with the paed as it has with the school and getting the referral.

PolterGooseLaidAChocolateEgg Mon 01-Apr-13 17:58:21

Agree with dm and will also add that my ds can 'pass for normal' for short periods, 10 minutes is nothing, ignore the GP and good luck with assessment flowers

buildingmycorestrength Tue 02-Apr-13 07:02:31

Thanks guys. Will hang in there.

buildingmycorestrength Thu 04-Apr-13 14:22:44

Referral came through today...for Tues 16 April. Very soon...thought I was in for a long wait.

Dinkysmummy Thu 04-Apr-13 14:26:09

Wow..

Hope it goes well flowers

Remember your written list of concerns and written list of questions, including 'what happens next?'

buildingmycorestrength Thu 04-Apr-13 19:18:35

Had a chat with a couple of friends about what to expect, very useful. It will be a pediatrician who sees us.

Have also printed off this list to go through with them.

http://spdsupport.org/resources/child-spd-symptoms.shtml

as he ticks a fair few boxes.

Think I will tell him it is just a checkup for his sore tummy he had before the performance.

Do you know if they will likely get him to do tasks? Or it more of a general chat?

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