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Original poster

Assessment day tomorrow - feeling ridiculously nervous

30 replies

moosemama · 16/01/2011 21:22

Evening all

Well the day has finally arrived, ds1 has his ASD assessment tomorrow. Have found out they are planning to do the ADOS with him as well as 1-1's with the Clinical Psych and OT. Our lovely EP will be there to support us and from what I've been told, they think it will be fairly short thanks to the wealth of reports and input they've already received from various professionals.

Ds has had a terrible weekend, lots of tic-ing, and stimming, constant movement and pretty much away with the faries much of the time. I think that's down to him getting himself all over-excited about dd's 2nd birthday yesterday, which was totally unnecessary, as she wasn't having a party. Friend of ours who came to stay last night and coincidentially is a learning mentor working with children with EB and ASD says he has never seen him like this before.

Sod's law would have it that he wakes up in a good mood tomorrow in the knowledge that he has the day of school and then employs every coping strategy under the sun to bamboozle the experts.

We had an 'incident' earlier this evening when he was caught stealing sweets from the treat jar. He lied - of course - and tried to tell me he'd just knocked the jar, but eventually after a talk about how bad it is to lie (for the 20,000th time) he relented and admitted it. Not one jot of remorse though, simply couldn't get why its stealing to take sweets from the jar without permission when he's allowed them when I give them to him. This all led into a huge long upset about how he doesn't understand us and we don't understand him and "Mummy I'm just really struggling at the moment - I, just can't understand anything".

So we had a cuddle and a big long chat about how we understand that he's struggling, how different people struggle with different things and some people need additional help sometimes and thats ok. I also explained that that's why we are seeing the doctors tomorrow and why he's been working with his EP, to see if they can work out which things he struggles with and why and how we can help him with it all. I told him roughly what we expect to happen (just that there will be more than one doctor and they might want to talk to him without us, or perhaps with just one of us and might ask him to answer some questions and possibly carry out a few little tests) and that he is to just be himself and not try to be on his best behaviour or 'please' everyone, just be himself and be honest about what he's thinking and feeling. Also said, not to worry if there's anything he can't do, because it doesn't matter and that will also help the doctors to help him.

Was that wrong, should I have told him all that? I'm worrying about it now. I had mulled over the idea of not telling him what was going to happen, as I knew then he'd be more stressed and less likely to 'perform', but I couldn't do it to him. It didn't feel right to stress him out just so they could see him at his worst. Too late now I suppose.

OP posts:

Eveiebaby · 16/01/2011 21:30

Your right - what's done is done so no point in stressing about it now. Good luck for tomorrow hope all goes well.

Ineedalife · 16/01/2011 21:36

Dd3 has an assessment too tomorrow ours is at CAMHS and I have no idea what they are going to do, it says allow 1 to 2 hours so that tells me a lot!!

I have told Dd3 that we are going but not what will happen as I would need to be specific and I can't.

How was he after you told him?

Try not to worry sometimes you are damned if you do and damned if you don't, hope it goes ok tomorrow.

Original poster

moosemama · 16/01/2011 21:47

Thanks Eveiebaby.

Ineedalife. He was a lot happier and calmer after I told him. I think, what with dd's birthday, all the grannies and grandads 'popping in' (rather oddly all at the same time yesterday and dh and my best friend (who ds idolises) stopping over last night, he was already pretty stressed and overloaded.

Knowing him, I was pretty sure he would be internalising stress about what was going to happen at the assessment. We usually have to give him plenty of notice of what's going to happen if there's a change to his routine, so he has time to assimilate it all and mentally prepare - he can't stand not knowing what's going happen.

Fwiw, I do think it was the right thing to do for his peace of mind. Its more that I think he's already right on the edge/cusp of getting a dx and if he pulls out all the stops with his coping strategies and gives his all to trying to 'please' the CP then I'm worried they won't see what we do and it could tip the balance, iyswim.

Daft really, they've got reports from other professionals who've both observed and worked with him already and the EP has been working with him for a couple of months now and doesn't have any doubts.

Good luck with your assessment tomorrow as well.

OP posts:

Thecarrotcake · 16/01/2011 21:48

Good luck to both of you and your LOs tomorrow x

Ineedalife · 16/01/2011 21:50

Thanx carrot

mariamagdalena · 16/01/2011 21:55

Hi, hope all goes ok tomorrow for you both.

Original poster

moosemama · 16/01/2011 22:11

Thanks folks.

Think I'm going to go and do the dc's packed lunches and iron my outfit for tomorrow. I need to distract myself. Lord only knows how I'm going to get to sleep tonight.

OP posts:

intothewest · 16/01/2011 22:25

good luck with it all tomorrow

Willmum · 17/01/2011 00:17

Good luck x

Peaceflower · 17/01/2011 08:03

good luck

alwayswandering · 17/01/2011 08:16

good luck both of you

lisad123isasnuttyasaboxoffrogs · 17/01/2011 08:22

Good luck today. I didn't tell dd2 what was happening when we went for reassessment which felt wrong and cruel but meant they saw her on a bad day.

Ben10isthespawnofthedevil · 17/01/2011 08:28

My son has his first assessment at the CDC today for dyspraxia/sensory issues. I really hope that we get a DX or at least somewhere towards a DX today. Leaving now - nervous - bad tummy from nervousness

bigcar · 17/01/2011 11:02

good luck, hope all goes well

starfish71 · 17/01/2011 11:04

Good luck moosemama. And to you Ben10.

Kesha321 · 17/01/2011 12:33

Hiya how did it go xx

Ben10isthespawnofthedevil · 17/01/2011 13:31

That was interesting. All of the physical issues ie balance, catching, writing that the school thought were a problem were not. He has poor core stability though which affects his seating. Lots of sensory issues though. Only a week till we get the report and get to go and have a row discuss the next steps with school.

Hope the other assessments have gone OK and you have got out of it what you want.

Original poster

moosemama · 17/01/2011 14:37

Hi all, thanks for all your messages of support. They are all really appreciated. I was sooooo nervous this morning!

Well, it went very well. I was surprised at how hard he found some of the ADOS stuff. Was ok with the tooth brushing thing, flatly refused to play with the imaginative toys, struggled with the part where he had to read social situations in various pictures. He didn't sit still at all for the whole session, made very little eye contact and at times was speaking to the CP whilst facing the wall with him bottom in the air.

Then they all had a meeting, reviewed all the reports from other professionals who'd worked with him and we went back for the results.

I asked why there was no OT assessment when it said in the letter there would be and they said that its because he's already been referred to the community OT team, but I felt they needed an OT's input into his dx. When we came back they had brought in an OT to discuss our concerns and explain how they would be involved. Apparently they have really got their waiting list down, so he should be seen within the month.

Ben10 Interestingly the OT explained that wiht AS they can have a lot of similar signs to dyspraxia, but its not so much about being unable to do things like balancing and catching when tested, but more about how he's able to use these skills together and for interacting with his world - so for example, they may be able to ride a bike, with or without stabilisers really well in a straight line, but struggle to avoid obstacles and steer round people etc. I'd never thought about it like that before and thought she was really interesting - could've stayed and chatted with her all afternoon.

SO...

Dx of Aspergers/HFA to be confirmed in writing via his Paed along with a full report and reports from all the other professionals involved. CP said he is on the high end of the spectrum and this is helped by the fact that he's very bright, wants to please others and interact. She said in her experience all this adds up to a very hopeful future, as he will eventually learn the skills he needs and should be capable of holding down a good job etc. The main problem will be that he tries hard to hold it together and cope and has developed lots of coping strategies, but that this leads to high levels of anxiety which then cause physical symptoms, poor sleeping etc. She wants him referred back to CAMHS for some 1-1 around that, but of course we have to go back to the GP to arrange it.

We were a bit shocked at some of the stuff he came out with while talking to the CP and it was obvious to both her and us that he has boundary issues which make him vulnerable to things like stranger danger, as well as a chronic lack of awareness of safety/danger, so this is something else that needs lots of working on.

Unfortunately, as is typical with these things in many areas it was a case of - there's your dx - bye bye good luck. They don't do any follow-up or support and could only hand over leaflets for under-funded, over-stretched voluntary support groups. Fortunately, we have some excellent support with school at the moment and have a TAC meeting on Thursday to thrash out the details of how everyone is going to approach this term. With the dx and reports I will also have enough to go for a statement as well.

Went for a coffee with dh on the way home, had a little sob, pulled myself together and came home. Nothing has changed, ds is still ds, but it feels very odd and quite unsettling to have a dx after all the struggling and fighting we've done to get to this point.

Suspect more will spring to mind as time goes on. Fortunately, I used a digital dictaphone to record the feedback (with their permission) so I can play it back and get it all straight in my head.

OP posts:

Ben10isthespawnofthedevil · 17/01/2011 15:05

Hi Moosemamma

We haven't seen the Educational Pyschologist yet but am going to ask for a referral to review the "behaviour" issues to see whether they are specificially related to concentration difficulties as I believed that they are.

Am very pleased that you have good school support. At the moment it feels the opposite for me and feel that I have to fight them all the time.

At least you now have a DX and can move forward with the rest of your lives and what that brings.

Original poster

moosemama · 17/01/2011 15:51

Ben10, have you asked if the Schools Inclusion Team could possibly come in and do an observation? Our school didn't bring them in, so I rang them directly (got the number from the LEA/Local Council's website) and asked their advice. They told me that if the school wasn't playing ball, I could refer him myself or my GP could do it on my behalf. They came in and observed him, twice and both times (first time general observation, second time ASD specific) came up with some really good insights and suggestions for how changing his workspace etc could help him and made recommendations for a couple of bits of equipment the schools should/could provide to help as well. They also identified a possible vision problem, which was later bourne out at an optician's appointment. He has better than 20/20 vision, but very poor visual motor control. We are now in the process of arranging for him to see a behavioural optometrist to try and get to the bottom of it.

Keep fighting, we've been fighting for almost two years now and are just starting to get there. Its horrible having to struggle and fight all the time, but worth it in the end. We still have a looong way to go, not least of all the whole statementing nightmare, but at least we feel like we are finally starting to make some headway rather than just running on the spot.

OP posts:

Ineedalife · 17/01/2011 16:47

We have just got back from CAMHS where we met with a very nice mental health practioner who seemed knowledgable in ASD.

We chatted alot and he wants to see us again without Dd3 to do a detailed questionairre.

We still have quite a way to go but as he said, the doors have opened for us and we are on our way.

Original poster

moosemama · 17/01/2011 17:35

Glad it went well Ineedalife.

Hope things move along steadily/quickly for you now. In our case it was meeting the right sympathetic professional that really helped speed things up, so you never know.

OP posts:

Thecarrotcake · 17/01/2011 17:51

So pleased all the appointments answered some things and moved you guys forward !

You now have a good place to start :)

and moose don't be shocked if tears come and go in waves while it sinks in.. Take a night off.. Get some bubbly in and have a drink with dh tonight.. because that horrid not knowing bit is over.

And most importantly you still have the child you know and love :)

Ben10isthespawnofthedevil · 17/01/2011 18:44

Thanks Moosemamma, thats really helpful. It sounds like what the OT said that their team would do in that they would come and sit in the corner and watch and then give the school and us ways to help him. Still feels like a long mountain to climb - I hope not two years though. At least you are there now

Ineedalife · 17/01/2011 19:11

Moose.. glad you finally got a dx and good luck for whatever comes next.

The chap we saw today did seem to be good and he even phoned me when we got home so that we could book another appointment around DP's shifts. We managed to book in for next week so fingers crossed.We are just coming up to the beginning of our 2nd year in the assessment process so are looking to keep the ball rolling if we can.

Ben10..have you had an OT assessment? If not I would definatly push for one. Dd3's showed up things that I didn't even know she was finding difficult. And the proffs seem to take their opinion seriously. I would agree with what moose said about using skills together. Dd3's motor planning can be dodgy and Dd1 was exactly the same.

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