Son has probable asd

mummyroysof3

haggisneepsandtatties wrote: »

Thank you! It is hard work getting your head round it, and adjusting appropriatly, but its well worth it. There is so much advice I want to give, but don't want to stick my nose in!
Just remember that there are people who know how you feel, and look after yourself! You are just as important as your son!

stick your nose in..all advice is welcome

i think the test is for fragile x and other things she didnt state what else though

daska

OK, yes I understand now, thank you

You mention getting him 1:1 help at Nursery. If you're looking into statementing (we've just come out the other side, doing things in the opposite order to you LOL, statement then diagnosis) can I recommend ParentPartnership and Getting Started With Statements by Tania Tirraoro N.B. we were told that it wasn't possible to apply for a statement prior to DS2 starting school but I'm assured by Parent Partnership that this is not the case. IPSEA are really useful for legal advice and going over proposed statements with a fine toothed comb.

Best of luck

SingleSue

I have two with ASD, one was a complete surprise (middle son with Aspergers) as we thought he was ADHD and the other, not quite a surprise after he had been labelled as having autistic like behaviour for years before he finally got his official diagnosis (complex autism).

I still remember the days when their formal diagnosis came through, even though we expected youngest's, I still cried buckets and thought life was over, their future lives gone but it doesn't have to be that way. Yes, life does change as does expectations but life is now better than I ever could have imagined it would be.

We discovered middle son responded well to music, that it calmed him down and made him feel more settled and so used that as a coping/stress reliever mechanism...he is now 15 and a drummer in a rock band whilst also able to play keyboards, guitar, ukelele and sing! He is also at a main stream school (statemented), in the top sets and seen as one of the success stories...not bad for someone labelled unteachable in year 3 and kicked out of primary education (he spent a year being private tutored and then spent 4 terms at a pupil referral unit before returning to normal education in year 6)

Youngest is an awkward one as he doesn't like people at all but even he has exceeded expectations, he too is in mainstream high school albeit with a very high level of support (he is also statemented) and doing ok but we all know that he is not reaching his full potential...but again, this has exceeded expectations as we were told he would never be able to be in mainstream.

He really doesn't like relating or socialising with human kind but get him onto electronic items like Apple products or pc tablets and boy will he talk your backside off! :rotfl:

The road has not always been plain sailing so prepare yourself for that but once you get the right school and the right therapies, it is so worth it...their advancements feel absolutely amazing.

Stressed_Out

Thank you for starting this thread :-) I can relate to what you are going through.

My little boy is almost 3 and we are at the moment going through this process we have just been referred to the ASD panel which I'm told can take a long time but also been told that he will need a statement for School he starts Nursery in September also, I'm so worried as I know he'll never cope without 1:1 support. My emotions are all over the place one minute I'm fine the next I can't stop the tears.

He's such a lovely little boy, he's non verbal at the moment so having help with that also.

It's so difficult not many people understand and just think that he is a 'naughty boy'.

Any help and advice would be gratefully accepted.

xx

daska

Stressed_Out wrote: »

Thank you for starting this thread :-) I can relate to what you are going through.

My little boy is almost 3 and we are at the moment going through this process we have just been referred to the ASD panel which I'm told can take a long time but also been told that he will need a statement for School he starts Nursery in September also, I'm so worried as I know he'll never cope without 1:1 support. My emotions are all over the place one minute I'm fine the next I can't stop the tears.

He's such a lovely little boy, he's non verbal at the moment so having help with that also.

It's so difficult not many people understand and just think that he is a 'naughty boy'.

Any help and advice would be gratefully accepted.

xx

Yes, my dad still thinks DS2 just needs to be spanked :eek: he really doesn't get it at all.

Use the links I've posted above for help with statementing. PP are funded by the local authority but very capable of arguing for you when they feel the LA has got it wrong. The book is full of what to do when, examples of how to set out your case, what information to include etc. IPSEA is really hot on the legal gubbins and checking proposed statements etc.

If it's any consolation you're doing well to have got as far as you have at this age. At 2 DSD was labelled by Early Years as having been delayed due to 'trauma' and they blocked us from getting further help at every turn. They even blocked his school from getting the Educational Psychologist involved. Every time we raised the question of speech delay, ASD etc with the Paediatrician he would nod and smile and refer to the Early Years report. We had to go private to get past them, but one report from a specialist OT last summer (when DS2 was 4) and they were dead in the water and every door has opened up. But he still didn't get his referral to the ASD panel until March this year.

shegirl

mummyroysof3 wrote: »

stick your nose in..all advice is welcome

i think the test is for fragile x and other things she didnt state what else though

Ds had blood taken to test for fragile x among other things too while he was going through the diagnosis.Things seem to be done differently now though as there were no questionnaires etc the kids went through a lengthy process -despite my son being a severe autistic and blatantly obvious- with observation in a special 'nursery' setting for the kids with suspected asd, at the CDC,where part of the time was spent with the parents there and part without where we were talked to and asked questions.Everyone was involved and it took 2 years in total (first referred at 18 months starting with hearing tests as they considered the possibility of being deaf.Quite a common one that lol)

It'll be hard when you get the diagnosis as you will be unsure of what the future holds.You can also wonder if you somehow caused it,but you didn't

mummyroysof3

i said while there i was shocked they said it while he only 3 cos was expecting to have to wait till he at full time school tbh. she explained its cos they like to get help as early as possible now

Aldahbra

mummyroysof3 wrote: »

i said while there i was shocked they said it while he only 3 cos was expecting to have to wait till he at full time school tbh. she explained its cos they like to get help as early as possible now

I am so pleased to hear that they are diagnosing early now. I know that this will have been a shock, even if you had your suspicions. I know I cried myself to sleep every night when my DD was first diagnosed. But an early diagnosis and early support really will make a big difference.

daska wrote: »

OK, yes I understand now, thank you

You mention getting him 1:1 help at Nursery. If you're looking into statementing (we've just come out the other side, doing things in the opposite order to you LOL, statement then diagnosis) can I recommend ParentPartnership and Getting Started With Statements by Tania Tirraoro N.B. we were told that it wasn't possible to apply for a statement prior to DS2 starting school but I'm assured by Parent Partnership that this is not the case. IPSEA are really useful for legal advice and going over proposed statements with a fine toothed comb.

Best of luck

It really is very important to get a statement. Although legally the school aren't allowed to discriminate against children with disability in reality they see a statement as the criteria for support to be given to children. It is hard and costly to ensure that a school meets your child's requirements without one. The process is quite drawn out, so it would be better to start the ball rolling as soon as you can, so that support can be in place as soon as he starts school.

ASD diagnosis cover a wide range conditions all on the autistic spectrum. You may have to wait until he is older to find out the exact nature of his autisum. Although life will undoubtably be harder for your child than other children, it does not mean that your child will not lead a full and useful life. ASD does not necessarily mean that your child will not have a good job, get married and have children. Early intervention makes a positive outcome more likely.

mummyroysof3

sorry but could some one explain to me what statementing is please? our support worker is arranging meetings with the nursery teacher and SENCO at the school as they need funding for 1 to 1 for him,is it wrong that ive said he cant attand unless they sort that out for him? i feel bad about that but he wouldnt be safe in that environment without being watched more closely than other children his age

Nicki

A statement is a legal document which sets out the extra support your child has been assessed to need in the school setting, and brings with it extra funding to enable the school to provide it. The full title is Statement of Special Educational Needs. I am sure your local authority will have info on line about the process in your area for applying for a statement and where you can go for advice on it. Be aware that it is a legal document, and as such the LA may well try to make it as vague as possible. Your job as a parent is not to allow this to happen, hence why you need help through the process. (eg some LA might use standard wording such as "access to a programme devised by a speech and language therapist" on a statement for a non verbal ASD child which is meaningless and not helpful for your child. What you would want to have in the statement is something like "a programme devised and delivered by a specialist SLT on a weekly basis in term time". One can be measured and enforced legally, the other is just placating the parents on paper and providing virtually nothing!