Aspergers/ASD support thread

Savvy_Sue

Snaggles wrote: »

Ryan made me giggle this morning - I said Santa would be coming down the chimney soon, and he said 'is that an expression?'. I said no, it's not, why?', and he said 'well, it doesn't make sense because we haven't got a chimney and you said if something doesn't make sense I could check with you if it was an expression or not'! :T

He's a little star!

Snaggles, is it not an expression? Does Santa REALLY get down your non-existent chimney? :rotfl:

But the joys of Christmas! We were doing fine until DS1 started nursery school. Until then we'd just done our own thing, a mish-mash of what DH's family used to do and what my family used to do. That year we'd gone to stay with DH's family for the big day, and boy were there tears on Christmas morning!

You see, Nursery had told DS1 that there would be a stocking on his bed when he woke up on Christmas morning (which there was - and still is although I find it increasingly difficult to stay awake longer than teenagers and now tend to toss it at them on my way to bed with instructions not to rummage until THEY'VE been to bed!) and when he came downstairs there would be presents around the Christmas tree. Which, alas, was not how DH's family organised things, so there was the tree, but No Presents! Because although Nursery had told DS1 how things would be, they hadn't thought to tell US how things would be!

Peace on earth, goodwill to all Aspies was only restored with difficulty - even the appearance of presents didn't really resolve the conflict between what he'd been led to expect and what had actually happened.

Snaggles

Oh dear S_S, no matter how hard you try, there's always something that will trip you up isn't there? :rotfl:

Ryan is asking so many questions about Santa - I'm sure he's trying to catch me out, so I'm trying the 'fob off and distract with something else' method of question avoidance. But he KNOWS something about what I'm telling him isn't quite right, I'm sure.

It's the religious aspect of Xmas that Ryan is having trouble with this year. He's been learning about it at school and I don't think his brain can cope with the fact that some people believe in a man who lives is the sky called God who no-one can see. He's talked about hiring a helicopter to go and find him and building a big ladder to go and check if he's really there.

I'm not religious myself, and am really struggling to answer his questions and explain 'faith' to him.

Although I LOVED the explanation his teacher gave the class about why there are so many different religions. She said it was like looking at something through a stained glass window - everyone would see the same thing, but in different colours and reflected in different ways depending on where you were standing.

I thought that was quite moving even though I don't believe myself.

Oooooh, that was a bit deep and meaningful for this time of day.....I think I need a lie down now!

quietheart

Had my meeting at the PALS office today. It was great. Walked in to a very friendly woman. She sat me down on the sofa, left me with my notes and went off to make some drinks. Then the head of delivery suite joined us, she said for me to look through and raise any concerns. It was all very relaxed. I relayed my concerns, obs not finding cervix, me overdue and bleeding heavily yet i was left for 8 hours without being checked on, was sent to another ward to phone dh (vomitting and in full labour....) as the payphone on my ward was bust, was only examined when nightshift changed over and then i was fully dilated and felt i had been for a while.... i won't bore you with the rest. my main worry was that during my 2nd pregnancy my midwife said i'd had a section due to baby's distress, i knew nothing about it. I wanted to know if he had experienced a lack of oxygen at birth and this was clearly discounted. She showed me a report where they test the umbilical cord blood to check the oxygen levels and he was perfectly normal, also his agpar was 9 at birth and that wouldn't've been the case.
I was told the dr who examined me was very junior and shouldn't have been on delivery suite without supervision (ouch), the care on the ward was poor and inexcusable but the main thing is that the section wasn't urgent it was due to delay not distress so my little boy's problems are very unlikely to have anything to do with his birth so i can stop beating myself up about how i could've done things differently.
feel so much better about it now, what a great service.:T

Snaggles

Rovers, I'm so glad the appointment has gone well and you have got the answers you were looking for. Fantastic that they have been open and honest with you too.

Snaggles

I am so stressed out - the CAMHS team have had their meeting (thought it was on the 15th December but obviously I got that wrong), and they have decided that they're 'not sure' what's wrong with Ryan.

They said the information we have provided gives a clear and consistent picture of what Ryan is like at home, but the information school have provided is basically a mess - 4 different reports, from 4 different people, saying 4 different things about how Ryan behaves.

So they are now going to have another meeting on the 14th of January to try and clarify some of the information they have received.

I know I'm completely over-reacting, but I feel absolutely gutted. It's so frustrating. I feel like this is going to end with no clear diagnosis and no help or support for him. I've spent half the morning crying (which was pointless because I don't feel any better, it hasn't helped Ryan, and I've ruined a perfectly good pair of contact lenses ), and now I'm just feeling like I can't cope any more.

Arrggghhhh........I must sound like a lunatic but........I just want someone to help me to help my lovely little boy.

In the meantime, Ryan just keeps on showing all the classic symptoms of ASD, but now I'm starting to doubt myself and wonder if I'm just imagining things.

quietheart

Snaggles, I really feel for you. Do you know what though, you almost knew this was going to happen. I've been really impressed by you that you clearly know your son so well that you are sure he has aspergers. and as for you imagining things - hey if only, if only he didn't find things difficult, if only life wasn't a struggle for him. You know you are right and it's grim but it's your job to keep a clear head now and get the diagnosis and get the support he needs.
It sounds like a jumbled mess with too many people involved and no one overseeing it. Who are the 4 people who have compiled reports? Who is deciding upon a diagnosis - surely that should be the person doing the school assessment, that person then speaks to the teacher but has to be in control. Have you had involvement with CAMHS?
I don't want to bombard you with questions, I know you don't need it right now but I'm sure you are right and you just need to see where to go from here.
As for the crying, you may not feel any better but you'd probably feel worse if you hadn't, it'd only come out later probably at the most inconvenient time.... go easy on yourself girl, you've every right to be feeling frustrated.
Am thinking of you....

Snaggles

Thank you for your kind words Rovers, they are really appreciated.

The 4 people who have written reports and sent them to CAMHS are his current teacher, his last teacher, the senco, and someone else whose title I don't know but who has been doing some small group work with Ryan. But they all seem to have differing opinions about what Ryan does and why.

Then all these reports go to the CAMHS team, who look at them in conjunction with what we have told them, and with the observations they have done themselves, and the report from the speech therapist, and they decide on a diagnosis.

So it does feel at the moment like a huge number of people are involved and it's all a bit of a jumble.

I've started to keep a little diary and make notes in it whenever I feel that Ryan is behaving unusually, so that if they ask us for examples, I have them to hand. Maybe it's a bit late in the day, but I get the feeling we have a way to go with this yet.

Thanks again, your post really has helped to clarify things in my mind.

quietheart

Hi Snaggles
Well I can say I'm just about certain that my son wouldn't have had a diagnosis if they just relied on the school's opinion. He holds it together at school but has terrible anxiety and outbursts when away from there. Is the SLT a general SLT or a specialist in ASD because that it what he should have. If I were you and I don't want to be a pest but I really think you should contact your LEA's parent partnership and get someone clued up on your side. Have you got a copy of the SEN code of practice - this is priceless, you walk into a meeting with it in your hand and suddenly people listen to you, quite a marvellous (and free!) tool. (google it, they send them out quickly). Parent partnership can be a tad rotwellierish but it sounds like you need them. They helped me through getting my son statemented and it just really helped having their backing and support.
You shouldn't have to deal with this on your own. What are the main 'issues' for Ryan? With us the biggest is understanding in the classroom, sometimes he gets it, does the task in double quick time and everyone's happy. Another time the wording just doesn't fit for him and I see the fear in his eyes when the class go off to do it, it'll be straightforward but he just needs an individual explanation in simple english at times like this. His anxiety is the hardest to deal with, to see him get so twisted up it's heart-breaking.
Back to you though, really hope you are feeling ok and that you get through this. It'll fall into place but I know it's such a worry until it does. I found my anxiety getting really bad over the stupidist of things, really doing my own head in if I'm honest.....

Savvy_Sue

It occurs to me that maybe the reason for the different responses people get from Ryan is that they treat him differently. Maybe one person explains things in simple language, which generally gets through to him, spots when he's not 'got it' and goes over it again. Another might use different kinds of language, more picturesque or humorous, which Ryan just doesn't get. Also adult tolerance in the school setting can vary quite widely, IYSWIM - to one person the fact that Ryan STILL hasn't got it isn't a problem, while another will be frustrated themselves because they don't know how to explain to him what it is he hasn't understood.

I guess the thing to hold on to is that they HAVEN'T said "anxious mother, what's the problem?", just that they're not yet sure what the problem IS.

Rovers gives good advice, might also be worth contacting IPSEA even if just for a chat.

And before you all write schools off, I knew DS1 was a bit 'different', but it was the school who called me in to talk about 'how he was getting on'. Mind you I think there had been question marks over him since nursery, and this was secondary before I knew anything. But I don't regret that: it didn't impede his learning, and he'd had teachers who picked up on the fact that he didn't easily make friends, and kept an eye on him to make sure he could connect to those he did have.

quietheart

IPSEA were great for me also, fab service.
SavvySue, I think so much depends on each individual child, where they display their 'different' behaviours, how the school deals with it, whether they notice etc. I guess a lot is down to each teacher as well. I also think as my son is only 6 his social interaction difficulties aren't too bad as this age but as time goes on this is likely to become more evident to the staff. And just to be clear, I'm not critising the school, they've been so good to us since day one (where, like you, we were aware that he was different to other children, we just weren't sure how different and whether he'd grow out of it) he just holds it all in at school and explodes when he gets home:rolleyes: .
Snaggles, hope today's a better day for you. Let us know how you're doing.