Recent diagnosis

[witsend]

Hi - posted at begining of this month (seems ages ago now) to say son has finally been diagnosed with AS, since then I've just been letting the news sink in, have got a book from the library and told the relevant people (including of course this forum). I've been through the 'thank God at last' stage and the 'maybe they got it wrong stage' and now have realised I'm at the 'Oh what should I do now?' stage! Thinking about it now I've realised in my relief I just walked out of the cons appt without asking very much about what next. Or is there a what next? The cons was very pushed for time and that didn't help but maybe I should have asked for more info? My own little plan is to read up more on AS (thoughy am starting to feel 'overloaded' and to contact parent partnership re next statement review meeting but that'a about it. Should I be doing something more? Haven't had any advice about how to handle sons difficult behaviours or about things I should or shoudn't do - feel a bit useless really. I mean it's ok that I'm relieved I've been 'proved right' but that in itself isn't helping son is it? It's almost like the battle for diagnosis overtook the cause for diagnosis if you kow what I mean? Did anyone else get constructive advice at the point of diagnosis or have most of you been left feeling what next? Worried now I don't know what I should be worrying about!!

 

Witsend.

[Viper]

Hi witsend.

 

Sorry to say this but since my DD got her DX that has been it. No help, advice or even contact from anyone and that was 5 yrs ago. Not sure what is suposed to happen but as far as I can tell your on your own unless you hit a problem with school then the school want to know what you are doing about it.

 

Maybe somone else has had more luck.

 

Viper.

[Kathryn]

Hi Witsend,

 

I can identify with this situation. We were initiatlly relieved at our daughter's dx but there was no one to show us which direction to go in next. Nearly all the help I have received has been through reading books and articles and from talking to other parents (especially the ones on this forum). Most of the professionals we were referred to knew less about AS than we did, so we have had to find our own way through it all - it may be different in your area.

 

Don't be too hard on yourself, the dx is still very recent and you still need to give yourself time and space to let it sink in; read as much as you want to but take a break from it sometimes as well.

 

You are probably already doing a lot of things right in the way you handling your son, so give yourself some credit. It may be a good idea to go back and ask for more information and guidance from the professionals who diagnosed him now you have had time to think.

 

K

[lil_me]

The biggest help for me has been this and other forums, constant reading for months (gave myself a headache) and the local support group which in Durham is brilliant.

 

I do know how you feel, all the medical problems my son was diagnosed with, thats all I got, a diagnosis. The rest was left up to me, I suppose as a parent/carer we have to choose how much information we want and how to find it.

Edited July 13, 2005 by lil_me

[Jericho]

Even though I expected the diagnosis of ASD (and got it!) I still couldn't think of any relevant questions to ask at the appointment. This must be fairly common because the Paed invited us to phone her if we needed/wanted to talk more.

 

We were fortunate to get a diagnosis while our son was still a pre-schooler so we get lots of advice from the Early Years Inclusion Service and portage. It may be worth contacting a local support group to see what other parents recommend in your area.

 

Good luck.

[Surrey]

I dont know where you live - but there ARE helpful organisations out there. Dont rely on help from the local authority alone. I live in Bromley and found the Bromley Autistic Trust most helpful. I dont know how old your child is but they gave me some very good advice about looking for secondary schooling.

 

My local school has an AS unit, but children are still in mainstream classes with help. After making a lot of enquiries I found that people who had intitially been happy with the placement, were finding that their AS children could not cope as they rose into years 8 and 9.

 

However, each AS child is very individual and it is very important that you make a decision about what type of schooling you feel is best for YOUR child and stick to your guns. I am lucky enough to have secured a place for my son at a specialist school with very low pupil/teacher ratio.

 

Gut instinct will tell you what to do in the end.

 

Good luck.

[mom on a mission]

hi , my son was diagnosed 3 years ago when he was just turned 2 and before his diagnosis there was lots of support and people involved but since his diagnosis there has been nothing it seems like once you get the diagnosis then they think thats it they will be fine of course thats not the case and even now three years on life is a rollercoaster of emotions but if you need help , advice , a sholder to cry on or some one to shout at your in the right place and the best thing is we all now how it is so theres no explinations or excusses needed keep your chin up you will find your way through this and every one will be with you one step at a time side by side <'> <'> <'>

[witsend]

Thanks everyone for your replies. It does seem that us parents do have to find out most stuff for ourselves, in one way that's ok 'cos we are the parents but I can't think of any other 'medical diagnosis' that is relayed with so little back up/support info etc (I'm a nurse) and that makes me a bit naffed off. This forum is brill for information and support I am so glad I found it. I have got the number of a local support group and yes I think I will give them a ring. Surrey my son is 10 and I will soon have to make the crucial decision re which secondary school will be best, it's interesting what you said about your sons school, I am basically stuck between choosing the local secondary mainstream school (word of mouth tells me they are 'good' with special needs kids) or another school much further away but with a really good reputation for SEN and 50% of the kids attending have SEN, this school also has much smaller classes but would mean quite a long journey there and back each day! Anyway I'm going off at a tangent a bit there and will prob be best to post about the school dilemma seperately because it would be helpful to hear others opinions too.

Anyway thanks again just being able to come here for help and to let off steam is great. Luv Witsend.

[Surrey]

Hi Witsend

 

My son is 10 too, with high functioning autism. He starts his new school in September. I faced the same dilema as you. Local mainstream - good academic school, but too much pressure on an AS child - 2000+ pupils, 16 different teachers per year, languages and lots of homework. No flexibility with curriculum and placed in sets. Undoubtedly would have been placed in lowest set.

 

Specialist school which was ideal but miles away and would have meant travelling over two hours each day there and back in a taxi.

 

In the end an out of borough residential school was suggested. I turned this down point blank. However, I did go and visit, merely to ascertain what I should be EXPECTING the borough to provide for my child. Gosh was I surprised - I came away thinking WOW - this is the place for my son. He will be coming home every weekend and I know I have done the very best for him. It feels SO right.

[witsend]

Hi Surry- I'm really pleased you found a school that feels so right for your child. It must be a great relief knowing you've found the right place. I was sat here composing a post back with more details about the schools dilemma, but have decided to start a new post re this - so if you have any more advice please look out for it cheers. Luv Witsend. PS does your child not mind being away from home during the week? I have to admit residential school has never crossed my mind.

[Surrey]

Hi Witsend. I thought my son would hate the thought of boarding. He was quite apprehensive when he went to visit the school. However it was so friendly and everyone has the same problems. I think he is now old enough to understand that he DOES have a problem and realises that it would be better to be in a place with people like himself than to struggle in a mainstream school.

 

He has been for the induction day. Everyone was so kind to him, even the year 10 children. When he came home he was chuffed that people had taken the time to talk to him (this doesnt happen in mainstream - he is considered odd). I knew I had made the right decision when he beamed at me and said "Mum, I think I might be popular at my new school. I'm going to have friends"

 

For someone who has spent his entire school life feeling inadequate with very few friends, this was the best thing he could have said to me.

 

Im sure I WILL have teething problems, but I'm keeping my fingers crossed.

 

Surrey

[witsend]

Oh Surrey just read your post and what your son said brought a tear to my eye. I wish him the best of luck at his school .I hope it works out for both of you. Just today my son told me how lonely he feels at school and how his "friends" don't let him play with them because he is too bossy! How wonderful that your son has found a place where he feels he can 'fit in'. Best of luck to you both - Luv Witsend.

[Surrey]

Thanks Witsend.

 

I too have the bossy thing - autistic children always want games played THEIR way, and they dont understand social rules - another reason I was against maintstream!!!!

 

l'll keep everyone posted about his progress and I will look out for further posts from yourself. Good Luck

 

Surrey

[Zemanski]

the best people I've found for advice and strategies (that are free) are advisors for autism or outreach teams within the LEA

 

you can get in touch with them personally if you ask for a contact through the social inclusion/SEN dept. Your responsible officer should know who they are - mine is pretty irresponsible though and didn't have a clue!

 

also the NAS has lists of local autism/AS support groups

 

good luck

 

Zemanski

[witsend]

Thanks for that Zemanski - I didn't realise such a service existed. My LEA have been worse than useless at times, don't even currently know who named officer is - they do seem to keep changing. But will follow this up now I know about it.

Luv Witsend.