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Going through new diagnosis with DS aged 4. Special school advised, a bit in shock :/

(13 Posts)
mumoftwolittlerugrats Wed 22-Jun-11 11:14:47

Thought I could share my feelings with someone that has some idea what it's like?

Well, in the past I've always thought my son (now aged 4 and a half) just had some delays and would catch up. Realised there was actually a problem about a year ago, when I saw how different the other kids at his nursery are to him.

Today I recieved the report from an hour long first appointment we had with a paediatric consultant the other day. She writes that he's very likely Autistic, and says that a few times actually, and says she needs a further appointment to confirm this. Also he has significant speech delay.

She told us when we saw her, it's rare that she would say that so easily and usually she sits on the fence and asseses for a good while, but our son is showing very clear signs and meets the criteria already for diagnosis (within the first .
mins) she even mentioned quietly that he's really not n this planet and treats her like furniture while leaning over her and has no spark for interaction at all.
Which I can't deny, he'll only communicate when really necessary. Or very occasionally to repeat some learnt phrases to me.

I already know all this, but it's different when the professional actually says it.
I went in there thinking; this is pointless, she'll would say 'oh he has some delays but will catch up'
I mean, surely he would have to be rocking constantly and doing A-levels mathmatical equations to be 'Autistic'?

Well I was shocked at how seriously she took us and my son's behaviour.

So don't know whether to be relieved he has something to put a name on, and hopefullyunderstood more, and that it isn't my fault.
Or sadenned that it's turned out to be something that might not go away?

We went through this so we could get evidence to get him a learning assistant at school, because Iknow they are helpful, Ialways did great in class when one was on hand to helpme.

But in this letter she's saying that he just won't cope in mainstream school and that a 'special educational setting' could meet his needs in the future.

That's a bit of a shock, I remember there being a special school near me when I was a kid, and always though it was for kids in wheel chairs and really disabled people. I never considered that my son wouldneed to go to one. He was so normal when hewas a baby, I though I would have him reading and writing by this age, and that he'd be so super, because of all the effort I would out into him (first child, can you tell).

I just have no idea what the future holds now.

If he goes to special school, doesnt that mean he won't get GCSEs?
Will he ever get a job?
It's scary.

They're saying I can get DLA but I feel like I'm scamming them, because he's not in a wheelchair.
I mean the extra money would be fab and I want it.
To be honest having him means I don't use public transport anymore, and I don't work fulltime like I could before, so maybe with DLA I'll be able to run a car, rather than relying on everyone else?

Does anyone know how much he'll be entitled to?
I don't know if his needs means he'll get the lower rate of 18 pounds a week, or more?

Does anyone else have a child with similar special needs?
What happened with them?

mumoftwolittlerugrats Wed 22-Jun-11 11:17:18

Also does the consultant say what type of autism the child has? Does my son sound very autistic from what I write here?

utah Wed 22-Jun-11 11:35:19

It will take time to kick in and the roller coaster of emotions will set in one at a time or all at once. This is not down to you so if the guilt kicks in remember there is nothing you could of done to change that. As for DLA is down to how much extra care you give your child compared to children of the same age. My son is autistic and has no sense of safety ie will run into a road. I recieve high rate as he cannot be left in a bedroom without an adult so I have night time care. (you need both day and night to get high rate. you can order the form today and it will be back dated from today but you still have time to complete it. Do not do the from alone, ask for help, use celebra guidelines. It is horrific and it is when you realise that your child is disabled.

mummytime Wed 22-Jun-11 12:08:05

I would also suggest you talk to the NAS, I have a friend who is a counsellor with them, she didn't get the diagnosis for her eldest until he was about 7.

With any child who is diagnosed with anything, it comes as a shock to the parents and makes them feel guilty. Do talk to lots of people who know about Autism, read widely and good luck!

cory Wed 22-Jun-11 12:19:07

Big glass of wine for mumoftwo. I think this is something a lot of us have been through: we fight and fight to get a diagnosis- and then we are shattered because seeing it on paper brings it home so. But really, nothing has changed, your ds is exactly the boy he was before- it's just that he may have a happier and more successful life because of the support you are getting in place.

Incidentally, my dd is one of those kids in a wheelchair rather than on the spectrum, but I can still feel that reaction from time to time, that I can cope as long as I don't see it in writing.

I think you will find special schools, or special units in mainstream schools, come in all shapes and forms and your ds' learning shouldl be tailored to his abilities and needs. However, the paed may not know much about what actual educational provision there is, so I wouldn't listen too much to her predictions on that score.

But definitely get some help in applying for DLA- and don't forget, it's the worst day you have to describe on the form: not how well you feel you could cope on a really really good day.

justaboutWILLfinishherthesis Wed 22-Jun-11 13:15:43

Message withdrawn at poster's request.

BialystockandBloom Wed 22-Jun-11 15:47:12

Welcome to the board mumofrugrats

I'm so sorry you got such a shock diagnosis sad The meeting where you get the diagnosis is horrible - it's so final and official. We all know how you feel on this.

Please take with a pinch of salt what she says about special school. For a start, the local authorities are now all aiming to have every child in mainstream where possible, with adequate support of course. Secondly, she is not an educational psychologist, and on an hour-long assessment is really not placed to say where he should be educated. His level of engagement with her during the appointment is not, in itself, an indication of his cognitive ability.

He should have a full educational assessment to help determine where he goes to school.

I have to say though, if he is as severe enough as the paed seems to imply, why has his nursery/preschool/school not picked up on anything? hmm And if he is severely speech delayed, are they doing anything to help with this? What support does he get at school/nursery?

Everything will be an awful whirl of emotions, fear, sadness and worry for a couple of weeks, so don't worry now about the future (esp the long-term future like gsces etc). When you and your family have your head around the diagnosis, start reading up on ASD, and look at the specific difficulties he has - then look at ways you can help with this.

The only things I'd do right now is get on to your GP/HV or back to the paed about referral to Speech & Language Therapy.

Look into applying for a Statement - ask the school SENCO about this.

And look into DLA.

Don't know if this is nationwide, but in london there is Contact-a-Family, who have useful advice. Also the National Autistic Society.

Stick around this board - many, many of us are parents of children with ASD and there is a huge amount of knowledge, info and advice here. smile

And a big wine or brew.

justaboutWILLfinishherthesis Wed 22-Jun-11 16:15:05

Message withdrawn at poster's request.

justaboutWILLfinishherthesis Wed 22-Jun-11 16:16:05

Message withdrawn at poster's request.

BagPuss71 Wed 22-Jun-11 21:04:35

Read your post and my heart went out to you - I remember clearly the moment when the penny finally dropped for me, in our case when he was 3 and the hv said she was concerned about his behaviour, kept thinking my DS was just slow talking, it was because he hadn't been in a childcare setting etc It was such a shock and I was so sad for him. But I also felt that I wasn't this failed mother that I thought I was and there was a good reason why he didn't respond to me. In fact I felt quite proud that I had got as far as I did without any outside help.

It is a shock nevertheless. Like you, I worried about his future education, jobs etc. Its a journey that we are all really on and one we are only at the start of (ds is 6 now). I still worry about what will happen to him but all mothers do! My ds has a formal dx now and a statement (20hrs a week 1:1 support) in mainstream school. We also get DLA and have used it to fund swimming lessons in a small group (there was no way he could do it with his peers) , he can swim now, something just a couple of years ago I would have thought impossible. He never stops talking, some of it echolalia but who cares! He has just done a reading in his school assembly - just a sentence and something other parents wouldn't have thought much of but, to me, I was bursting with pride as I know how much he is overcoming to achieve this smile

Remember that this is the turning point and whilst ASD, if it is that, is lifelong, he will be taught strategies to deal with his behaviour and as he grows older, he will be better equipped to cope. You're on the right path to support your ds and the only thing that has changed is that you now have a possible explanation. Also, bear in mind its not something other parents talk about in person but there are several children at my ds mainstream school with ASD. It is a shock but its not the end of the world xx

First.. welcome to the board Mumoftwolittlerugrats smile
Second.. ((HUGS)) you have had to take a massive amount on board, so please be kind to yourself....

Third.. my DS2 trod a similar path.. 'global delays' 'speech delay' then 'Autism' then 'special school will meet his needs best'

They were correct on all counts... and it hurt, hurt really badly ..
BUT my DS2 started special school at 4 years old..and is now 14. Now talks (non stop.. mostly about his obsessions!) reads ..well, writes..
He has moderate learning difficulties and at 14 is about age 7 academically, except for maths... where he is going to be put for GCSE!!!!! As his abilities have developed and flourished in his lovely school..in tiny classes of 7 kids and 3 or 4 staff, he has been able to integrate into some mainstream.. now does maths in the adjoining mainstream school at their 'unit'.. where he is accepted as he is, and liked by many!

If you had told me this when he was diagnosed I would NEVER have believed it..the future seemed so bleak. But with the right support he has continued to develop and learn.

Yes he will always be autistic, always have learning difficulties.. but this month he caught the bus by himself to his special needs youth club! He is doing things I never dreamed possible.. and he is a lovely gentle giant of a boy, who lives in his own world but has nevertheless learned to access ours too...

Early diagnosis is the BEST thing as it means you can get the best schooling, and support earliersmile
ANd do apply for DLA....

AttilaTheMeerkat Thu 23-Jun-11 07:21:14

Do apply for DLA - you won't be scamming them at all by doing so therefore please get that erroneous idea out of your head. Would second the counsel to get help re the DLA form because its a horrid form and you need outside help to complete it - Cerebra are indeed helpful when it comes to this.

I would also talk to the SENCO about a Statement and make this application asap to the LEA; he will need more support regardless of which school he goes to.

You need time to come to terms with what is happening here re your DS and I would also call the NAS (National Autistic Society).

You need to and will over time become your child's advocate. You will develop that thick skin over time. This is because you as his mum as his best - and only - advocate here. No-one else is better placed than you to fight his corner for him, this is also because no-one else will.

Agnesdipesto Thu 23-Jun-11 11:44:18

At the moment you have a legal right to mainstream education and the LA have to put in the support necessary to make that work unless it is so expensive to do so it is an unreasonable use of resources compared to special school or incompatible with the education of other children (eg severe behaviour problems). See IPSEA and NAS websites
But take time to get you head around it and look at all the options: special, independent special, mainstream with ASD units, mainstream with TA, bit of both (dual placements), parttime school or flexischool, home programmes (ABA), neighbouring LAs

There is a lot to be said for having the most expert teacher in ASD teaching your child rather than an untrained TA in my view and special school does not have to be forever. Many children who get good intervention start in specialist provision and move to mainstream successfully later on.
Many also start in mainstream and then fail and end up long term in special.
With exceptions in both camps.

ASD is a spectrum and where a child starts out on that spectrum does not necessarily predict where they will end up. This is both the best thing about ASD rather than other disabilities which are more fixed and limiting - in that there is good reason to be hopeful - and the worst in that it means long term uncertainty as to what the outcome will be and in my case an excuse to put off accepting the extent of DS difficulties on the basis they may be temporary!

We are 2 years into diagnosis (DS is 4.5) and no clearer knowing what the outcome will be. We do know he is very bright, but also very severe ASD, but he can learn with the right high quality (ABA)specialist support. He has a home ABA (applied behaviour analysis) programme and ABA support in mainstream nursery. Which is the best of both worlds. But we have no ASD schools or units near us and we would have looked at those too. Many are now co-located on mainstream sites so again you can have both.

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