Should I go with my gut instinct?

[lynda4]

BTW.....I've done it! - I've been to the GP this morning armed with my list and J's school assessment from the LSU and he agrees that a referral is needed ! - hurrah...

 

I asked him the usual....'was he sure that was neccessary'', 'don't wanna make a fuss etc etc...and he was lovely - said who will know about from me, him and the psychologist? - therefore nothing to lose and best to get a professional opinion.

 

I also got lucky as he knows some of the staff at J's school - which I didn't know before today.

 

Just relieved now....he put me right at ease...know about varying scales/degrees of autistic behaviour and told me that it's the parents that know best! - so guys were all right!

 

Thank you all so much for giving me the extra confidence to go with it...Hopefully won't wait too long for a referral now.

 

excellent! Hope the next stage goes as easily, good luck!

[lynda4]

Hi mum22boys...I think only because I was lucky enough that the independant school I moved him too has a learning support unit attached and his reading ability was so far behind his verbal it was very clearly apparent there was an issue.

 

Dyslexia/other reading/literacy problems are the LSU at his school main area of expertise. They did say at the time if we wanted it confirmed by the dyslexia institute that we'd have to wait a year or so prob before they would confirm because of age. He basically had to start right from the beginning again with reading learning all the sounds/phonics etc and alphabet etc. Major breakthru when he could finally recite the alphabet with getting into a right old pickle in the middle.

 

If you strongly suspect dyslexia I would try and get the extra help with that before diagnosis - although easier said than done I know, but the diff it's made to J has been amazing. He will now attempt to read signs etc on his own and it boosted his confidence which was knocked quite a lot as he noticed the books all the other kids were reading that he couldn't.

 

Rgds

 

My friends son has dyslexia and she has paid for him to have private dyslexia lessons, I think its about �20 a time. Its made a big difference to him too but the flip side is that its risen him above the level where he could have been Statemented! I know if he hadn't had the lessons he would definitely have got more free help, they pretty much told her that. So if anyone is thinking of getting private help, might be worth getting the school or whatever's assessment done first.

[pearl]

Oh thats good news llisa. Fingers crossed you wont be kept waiting too long.

[JsMum]

Hi lisa its taken me all weekend to read throw your post and replies and there all wonderful and inlightening, I am glad you have been given a referral, and that things hopefully will be moving on, another thing to consider is the place of the centre of where the referral has gone ring them and leave your contact details as explain you would be open to short notice appointments, where other parents have had to cancel, this way could cut down the waiting list, ours is over 6 months, J is classed as an emergancy and we have one in two weeks time.

 

I have read with interest your posts and I was told that we as the parent know our children the best, and to always listen to that instinct of ours, and to go what our heart is telling us.

 

Js is very complex as he has speech and language delay, but matches so many of aspergers syndrome symptoms, if he is autistic then you wouldnt know by looking at him, after interacting with him and getting to know his fears then you would, his behaviour gets mistaken for naughtyness and attention seeking more so when he was younger.

 

Its a really difficult journery when our sons and daughters have so many impairments and challenges especially when this goes undiagnosed so it is very essential that they do get an assessment with the right professional and who is actually specialised in ASD because astonishing as it may seem some are not as we have found out even in a camhs unit where J was diagnosed.

 

Even when they are later on diagnosed its still hard work though, getting what they are entitled to and many services changing the criteria for supporting disabled children.

 

heres to a really big welcome and hope that you feel that you can get some valuable support.

 

 

JsMum

[llisa32]

Thanks J'smum - as you've probably guessed I'm still busy reading everything I can get my hands on

 

Like many of the posts on here re possible dianosis I swing from perhaps he's just got some autistic traits rather than aspergers. But then I know thats only because so many people seem ill informed on what Aspergers consists of, and the fact that children with aspergers can all be affected to a different degree and at different stages of their lifes.

 

Unfortunately many of the people I have close contact with at the moment just think Autism=Rainman, and Aspergers = really naughty kid - I am starting to dislike them all lots ! - so because my J is neither of those they then take the attitude that it can't possible be the case and why do I want to pursue this.

 

However....my parents who spend a lot of time with my son agree with me...and my ex (my son's dad, who he calls 'daddy no.1) is so aspergers it is pretty unbelievable. Until about a year ago I'd never heard of asd and when I found out the symptoms etc I ran through them with me ex....he said (only half joking) 'ah, so thats me then

 

Unfortunately at the moment he seems to prefer not to think about it, but at least for me it explains a lot - it got to the point that my freinds and family would stop visiting when I lived with him as they felt so uncomfortable because he would just mumble a hello (if they were lucky) and then mostly hide in the study - least I know it's not personal now. Strangly my ex also has a 'gait' and a very distinctive way of walking that I always thought was different...but again had no idea why at the time. All a learning curve, and I'm hoping to catch ex in a conversational mood soon to run this all through with him again. He has J 3 nights a week and they are pretty close, we all are really, my DH included. Ex even went to his stag do and our wedding He got to keep sprog for the wedding night

 

DH keeps playing 'devils advodcate' - which is also driving me potty....he never reads newspaper cos they are all lies (his opinion) whereas I read nearly all of them and make my own mind up - different or what!

 

Anyways I guess I'll keep reading and learning and hope someting positive happens. In my own mind I am worried about J going into year 3 - wether his teachers currently feel the urge to admit it or not at the moment they definately accomodate his little ways - which is good....but will not help me with a diagnosis. J is currently in the eldest bunch in preprep and likes to hang out with the younger ones in year 1 etc...once he goes into year 3 he will be the youngest group and i'm pretty sure the older kids are gonna get fed up with him as he 'latches' on and thinks he's being funny when really he's being a bit of a pest - I'm quite worried the older ones will feel free to tell him.

 

Good job I'm a stubborn ###### cos think I'm gonna need to be

[lynda4]

This is a really good book I think, for understanding and recognising Aspergers, read the reviews below too.

 

http://www.amazon.co.uk/Aspergers-Syndrome...7632&sr=8-3

 

If you don't want to buy it, you could order it from any library, for less than �1

 

Wish I'd had it years ago but it was several years down the line before I read it. I just love that man! He really gets to the nitty gritty of it, understands Aspergers from the inside out and picks up on the small things that you don't see in other text books. He does talks and the people I know who've been to them have found him brilliant, also very positive and inspiring. He has a website which has lots to read in it too

 

http://www.tonyattwood.com.au/index.htm

[llisa32]

Thanks Lynda - I managed to find that book in Waterstones on Saturday and I'm currently reading it through for the 3rd time .

 

It's definately enlightening, and he doesn't use complicated explanantions/examples - just as it is!

 

Thanks for the suggestion you're spot on...

 

BTW...thought my son had done his first bit of 'I must have that cos boy at school has it' today, but.....turns out

the must have trainers with spinning tops on the side, are actually spinning tops you can put a choice of about 20 stickers on and slip them in, out of the shoe.Then in...out.....in.....out..... . And there was me thinking he wanted new trainers to bounce around in , and whatever i do I MUST NOT put the stickers on crooked!

 

Ah well.....not a lot else to do on a rainy bank hol

[llisa32]

Hiya, thought I'd raise this thread again as had another question....

 

I have now got a child Pschiatrist appt for the end of this month and am busy diggin up all sorts of history, old school reports etc so I can make notes of anything potentially relevant.

 

What struck me tonight was how different he seems as a personality from 5.5yrs old to 7.5 yrs old. When I'm reading the school report from when he was 5.5 they say he plays with his peers, initiates conversation, gives answers ihn class...all sorts of different interacting stuff (admittedly they still wanted more, but at least there was a fair amount. But now if we fast forward to 7.5 yrs he's not doing much of that at all and really struggles now to either initaite a conversation or maintain one. Everythings usually question based, and then he's done with you!

 

Do you think he's more aware of himself now?....I feel a bit sad for him now ............all I've heard is digimons for getting on for 4 weeks now and none of his classmates are into them.

 

So..is this a common thing to happen...that the social side (difficulties) worsen as they get older?

[pearl]

So..is this a common thing to happen...that the social side (difficulties) worsen as they get older?

 

As a general rule, I'd say yes llisa. The child becomes more aware of his difference, and so do his peers. The gap seems to widen.

 

Its at its worst I think during high school years, when conforming is so important. NT teenagers are generally so insecure any kind of difference freaks them out. More their problem really but its our kids who suffer.

 

Then it lessens again at FE level as young people become more tolerant of difference.

 

Hope this doesnt sound too bleak. JP is thriving at the mo as you know, but we've had our ups & downs over the years.

[Karen A]

Hi We found that the gap between Ben and his peers widened because his peers developed significantly socially during year 2 and Ben did not keep up.Hence he became more noticable as being different.Karen.

[lynda4]

I'd agree with that too. I think younger children just accept people for who they are and aren't into things like following fashions and noticing differences. That sort of conforming to a certain 'standard' gets worse between about age 7 and late teens, then declines again later on. Our kids can come into their own when they're older as their peers strive to develop their own individuality - then being a bit unusual can be really cool. I think people on the spectrum are so interesting to talk to as their minds go places other people's don't and you can have some really good conversations and debates. My kids have always got on better with adults as they're old and sensible enough to see past the differences and see the fabulous person inside.

 

All my children have been popular with the teachers at their schools and I think they really appreciate their different take on school work, they've written some brilliant pieces, full of interesting twists and humour, which must make a refreshing change when marking so many books. Also, in late teens when most kids have stopped changing so rapidly and are settling into their adult personality, our kids carry on growing and developing long after the others have slowed. They will start to understand concepts that were unfathomable before and things click into place as time goes on, broadening their understanding and lessening the gap. I can see this with myself and the problems I've gone through with being touched by the autistic spectrum and also in my children, three of whom are now young adults. I don't worry so much about dd (my youngest) as I can see from her older brothers that a lot of things she's struggling with will be resolved over time. It's very reassuring - and that I also have friends who have obvious ASD traits but were never diagnosed, who talk about things they found difficult when they were young but learned and understood in later years.

[llisa32]

Hi, thanks for comments...the conforming comment is an interesting one..

 

J watched Dr Who a few weeks ago 'to see why his friends liked it and talked about it' - he sat there and watched it like a science experiment and decided it gave him nightmares and he has no idea why they like it

 

He's definately sticking with Digimon at moment..I was impressed that he wanted to do that, ie, 'see what all the fuss was about' - his words.

 

I guess this is where it starts getting more tricky with peers as they will all start following trends, ie doctor who etc whereas J is still into Pokeman/Digimon and Power rangers - thank god for Ebay!

[lynda4]

A lot of kids on the spectrum, especially boys, are very keen on computer games and Japanese anime and manga. These are very popular and with other kids too at the moment, so there's at least one place where they can be in line with their peers and have something to talk about. When my boys first wanted manga DVDs for xmas and birthday presents, it was very hard to find them but now they're in fashion, they're in all the shops, online, everywhere! So my boys are trendsetters rather than followers

[llisa32]

Hi Lynda, forgive me if I'm being dumb but whats 'Manga'?

 

Thanks

[lynda4]

Its a kind of Japanese anime but much more detailed drawings and usually for adults, like war games and things like that. There's more to it but that's about all I understand