Ok, I'm new here, DS has been assessed today

[sparkout]

I have always had concerns with his social and emotional skills/maturity and now we've been told he is poss aspergers or gifted with very immature social/emotional level. Even though I "knew" something was different about him I would put it down to me being a worrier and over seeing things but now it is real it feels a big shock

[Ben10NeverAgain]

Hi Sparkout

This board is not often used. It would be best to post this on the main Special Needs: Children board www.mumsnet.com/Talk/special_needs

It is a huge shock always to find out that your child may have special needs but there is a whole community of us who have been there and are there to support you with any questions you might have.

Here have a

[Ben10NeverAgain]

Sorry www.mumsnet.com/Talk/special_needs

[sparkout]

Thanks, have reposted!

[madwomanintheattic]

Hi spark.

He can be gifted and aspergers as well.

You might like to look up 'twice exceptional', there's stuff on the nagc website, and on hoagies too.

There's also a book called 'misdiagnosis and dual diagnosis of gifted children' or similar. And a raft of books on gifted kids with sensory stuff etc.

Ds1's eventual dx (after about 6 years of possible asd/ add/ odd/ pda etc) is ADHD with aspergers traits (sensory and social) and anxieties and phobias. And he's gifted, so fits a twice exceptional label. I'm not entirely convinced, but mostly the description fits the way he presents, as would a number of other labels, lol, so I tend to ignore the labels and concentrate on the description and support required.

How old is Ds? What tests are they planning on doing? Is he being referred initially, or are the school / EP going to get the wechsler testing etc out of the way first?

[sparkout]

He is 5, 6 in June. He isn't at school as he had huge separation issues, well still has and is only jut venturing out without me so we haven't pushed him into it and have home educated him so have no school input. We had a private psychologist recommended to us who came today and assessed him for maths/english/iq type things and obv spent a lot of time being talked at and observing his weird ways. She then talked to me for a few hours with asd questionaire and has said there are issues but he is a tricky one so has said he needs to go through GP to have a more multidisciplinary approach as he isn't an obvious case

[madwomanintheattic]

Yy, that sounds fair. Dd2 was assessed at 5. She is also twice exceptional lol, but in her case, cerebral palsy and gifted. (not sure how I ended up with two 2e kids for different reasons lol. At least the third one is nt and gifted!)

Private psych should be able to do full testing tbh if you can afford it, but obv entirely possible to get onto NHS waiting lists for asd assessment etc.

We are still mulling over home ed for ds1 (10 now), but the girls love school.

What tests did the psych do today?

[sparkout]

TBH I'm not sure on all the tests but they were iq type things, mathematical reasoning, puzzles/jigsaw type things. Basically the things he loves! But by doing them with him lots of his social aspects shone through eg he didn't listen, talked over her, answered a question he wanted to hear not the one she was asking. She then spoke at length to me about his early childhood etc

[sparkout]

How much would a full private assessment cost? I can't imagine we will be able to afford it but if the waiting list is huge or the time scale very long we may be able to look to grandparents as I'm assuming the earlier the diagnosis the better?

[madwomanintheattic]

We paid £650 but this was just for the wechsler/ wiat stuff - the iq picture, for dd2, but nearly £1500 for a comprehensive assessment for ds1 that included the iq and academic stuff as well as the diagnostic stuff for asd/ ADHD etc.

The tests sound similar to the wechsler tests, but it would have taken several hours to do the whole lot? And you should receive a full report with all of the tests administered and the results, and what they mean? What did you am the psych to do? Was it an hour or so chat for an opinion? Or was it specifically for testing?

[madwomanintheattic]

Well, tbh, if you are going to homeschool, there is a variable opinion on testing. Some home elders don't think it's necessary as they know their child and labelling won't help them access services / support in school as it's not a feature of their life.

But tbh, if you are intending for him to access education at some point and he is likely to need support, then, yes, the earlier the better.

[sparkout]

He sat and did tests for about 2 hours non stop as he wanted to do more and more! She said it will all be clearer in the report! When she spoke with me she went througha checklist of asd symptoms, eg to find out about when he was baby etc. We chose to have her because I always thought he was different and am finding him hard work. I kept thinking maybe if I had sent him to school he would be "normal" now and I had just been over protective so wanted someone with knowldeg in that area to see him and help us know what to do with him.

I want a label I suppose so I can understand him a bit more as sometimes I did ust think he was being difficult and not wanting to be kind not that he just didn't get it, if that makes sense and doesn't make me sound too mean??!! I'm not sure about school in the future. He is happy at home and learning and his social skills are improving at a gentle pace but it is hard work and I get very few breaks and its taking its toll on me. Also is this best for him in the long run? I don't want him to be unhappy and think school will be incredibly hard for him but is it best in the long run??!!

[madwomanintheattic]

All kids are individuals and need different things to be able to reach their potential. and schools can be such different places, in the same way that no two home elders will be alike.

So there's no right way to do things, and no wrong way. Just different. I think assessment is a good idea, so ask gp for referral to developmental paed, but then wait until you get the assessment results from this appointment and see where you think it is pointing. There is lots of stuff you can be reading in the interim.

It would be interesting for you to visit some schools though, to chat with the senco and discuss sn provision, and potential flexi schooling. But I would do it out of curiosity at the mo, just to see how you feel and find out a bit more about statutory assessment, and 1-1 workers, and school action and achill action plus lists, and individual education plans... It takes a while to get your head around sn provision! And there's no rush. Important for you to take your time. He's still going to be the same Ds, and a few months for you to get your head round everything whilst you wait for assessment will be fine. And even if you did decide you want him in school, it would be sensible to wait until September? That gives you a timeline to consider, what ever your decision?

[sparkout]

DH has a Dr appt tomorrow for something unrelated so I think I'll get him to try and get the ball rolling. I think I just feel so worn down but also shocked that the thought of lots more appts and maybe a bit of pushing as his signs are quite subtle seems like a huge ordeal. Are there things now that you wished you had known during or prev to you going through the diagnosis process?

[madwomanintheattic]

Not personally, no.

Ds has always been Ds. He's always been quirky, but no one had settled on a name for it, and because is reasonably bright, there was no impetus to. A lot of dx were suggested. In the end we only went for assessment at nearly 10 because his new grade 5 teacher kept us at the Parent's evening for an hour and a quarter and then burst into tears. [ smile]

But then, ds's little sis had a birth injury and has cerebral palsy as a result, so since then we have been v involved with sn and pan disability stuff, so knew the system, if that makes sense?

Do ask for a paed referral.