I have some questions re. my son, Autism, and where we go from here?

[NatalieJane]

Firstly, this is my first venture onto the special needs boards, so I am really sorry if I get anything wrong, say the wrong thing etc.

It's probably going to be a bit of a long one, and might be a bit muddled because I'm all over the place at the moment.

My DS2 (4yo in December) has never hit developmental targets, he is still in nappies, he can't draw pictures (doesn't have a preference between his left and right, doesn't have pen control in either hand), his speech was delayed, though over the last 8 months or so he is talking a lot more but it is not understandable to strangers, he can't dress himself, he sticks to routines like his life depends on it (we moved house about 6 months ago, but this is still 'the new house' to him, not 'home', hates it when DS1 is off school for anything, has to sit in the same chair at meal times, has to have his bad covers just so to go to sleep etc.), he obsesses with things, basically I had an idea that he may have some 'issues' (- sorry if that is the 'wrong' phrase).

Our HV (ex- community medical officer, so I pressume she know's what she's on about?) came to see us yesterday, first time we've seen one in over a year, I explained all of the above, she added a few things that she had picked up on (he has hypo/hyper-something limbs, I can't remember the term she used, and have no idea what it is, or what it means) when she was going through her little check list he was 'overly intent on pleasing her', I'd have said he is eager to please?

She kept saying things like 'I think there is definetly something going on' ' something there' 'you as a mum will know that he is perhaps going to need some extra support' whereas actually, yes I had realised that he found things either impossible or very difficult, but I am not a doctor, I don't know what this all adds up to? I pinned her down (not literally!) and she eventually said she thinks he may have Autism.

She is refering us to the community medical officer, who she thinks will give us a simple diagnosis of Autism, and if we're lucky they should have time to get extra funding and some extra support for when he starts school next September. Also a referral to SALT.

I think I was in a bit of a shock to be honest because now I have loads of questions, that I didn't think to ask when she was here, but I don't think anyone can really answer them (Will he ever come out nappies? Will he ever be able to use a pen? If he can't write, does that mean he won't be able to read? - Like I said, I don't think anyone can answer those questions) But also questions like, if he is still in nappies come Septemeber, and if he still can't hold a pen, will he be able to go to a mainstream school? And, SHOULD he go to a mainstream school? Does Autism get worse over time? Does it get better? Will he get to a point where he just won't learn any more new skills? When he's having a proper show down paddy, do I deal with it the way I always have, or is that now unfair since we know there is reasonable chance he's not doing it 'just because' he can't have his own way etc.?

How long does it take to get measures in place for school? If he needs to go to a different school, how much say do we get in that? - Which one? Are they that few and far between that there isn't really a choice? If he can go to the mainstream school he's on the list for (very over subscribed and he's number 36 on the list for a 29 pupil intake) if he is diagnosed as being Autistic, even if he is 'allowed' to go to mainstream school, I know they'd never come out and admit it but would that be an easy name for them to scratch off the list?

100's of these questions keep swimming around around, and I just don't know where to ask them to get the right answers?

I keep trying to think stay calm and carry on as normal until we see the CMO, and take it from there, but it really isn't very easy.

So sorry for warbling on, I guess I am just trying to get some of it off my chest?

Amberlight, thank you so much, all of what you have said has shown me that he can go on to lead a life that he can cherish. You have just put the first proper smile on my face in days! Will be showing DH your post tonight, all we've seem to found about how the future will pan out has been quite negative, so really, thank you :)

Could I ask if anyone would like to take a look at the letter? I must say I feel a bit uneasy a) going over the HV's head when she has been so helpful already, and b) the first and last paragraph sound so bloody formal, but it's what was on the template, and to be honest, if it means the difference between between getting the statement in time, or not, well, I'd rather have the statement! Obviously, I have blanked out the personal details.

_

Dear Sir or Madam,

Re: George xxxxxxxxxxx D.O.B. xxxxxxxxxxx

Request for formal assessment

We are writing this, as the parents of George, to request an assessment of his special educational needs under the 1996 Education Act.

George, as yet, does not attend a nursery or school, however we are currently trying to find him a nursery placement, and he will be due to start school in September 2011.

We believe that George?s special educational needs are as follows:

George is unable to toilet himself, and is still wearing nappies at all times.
George is unable to dress himself.
George?s speech was delayed and is currently not understandable to people who do not know him.
George has no preference when it comes to left or right hands, he has very little, if any, pen control in either hand.
George sticks rigidly to his own routines.
George obsesses with things.
George has Hyper-Mobility issues.
George has sensory issues, especially with loud noises, and new situations.
George has trouble with naming shapes, colours, etc.

Our Health Visitor, Ms. xxxxxxxx, has referred George to a paediatrician, speech and language therapy, and the Portage Group, and is confident we will get a diagnosis of Autism.

We understand that you are obliged by law to reply to this request within six weeks, and that if you refuse, we will be able to apply to the Special Educational Needs Tribunal.

Yours Sincerely
_

Does that sound OK? I don't know if I have described his inabilities in the right context or if they are even in the right terms?

Oh and also, should I leave the HV's name in or not? Not sure she should have told me she was thinking Autism, don't want to land her in hot water?

I would suggest not using her name, and changing the wording to "has suggested that there may be elements of autistic behaviour", since unless she's in an official diagnosing role at the moment she can't officially express confidence in the end result?

It sounds fine Natalie.

2nd line - I would add the word 'statutory'

Request for formal statutory assessment.

You can name the HV if you wish but I would state she has suggested that he may receive a dx of ASD.

Good luck and please let us know how you get on.

Best wishes

NJ As you can see, there is a lot of help here, especially for a real 'do-er' which you obviously are.

This is going to sound a bit depressing, and it is in a way, but also should give you hope.........

With developmental disorders, the prognosis is very much tied up with parental acceptance and then resources (determination, knowledge and of course money makes things much easier). Whatever walls you face always have higher expectations than anyone else for your child. If you don't believe in him no-one else will give him the chance.

This is all a huge responsibility, but then who else would ever care as much as you or be as committed as you, that you could hand this over to? No-one.

Have nothing but the highest of expectations of the service providers. If you feel let down or fobbed off you probably are being. Collect yourself and then challenge. Run anything 'odd' by the people on this board. You'd be surprised at what can be done that appears to be impossible at first.

Good luck with everything.

Thank you for the suggestions girls :)

HV rang this afternoon (I think I might actually be falling a little bit in love with her, have read a few stories on here now of how people have been let down, am so pleased we're not dealing with any of those issues as well - and obviously very sorry that some of you are), anyway, she rang to say she has got the referrals for the Education Pyscologist, and for Portage, I need to check them over and sign them so she can send them off, she is dropping by Friday morning so we can do that, I had a good old chat with her and I asked her to explain everything, she has already referred to the CMO, by passing the GP, and to SALT, she's put on the referrals that she is reviewing George in a month's time, so she's hoping she'll have heard back from them all by then.

I also rang the nursery, they have got a place for him, and it sound's as though they have a real positive attitude to special needs, the nursery manager has a degree, something to do with kids with special needs, one of the other managers actually looks after an Autistic child full time, and the other manager is also a foster carer so has seen different aspects of special needs over the years. The nursery is split into the nursery and pre-school, the pre-school already has two children still in nappies so hopefully G won't feel like he's the odd one out at all. We are going to go and see it one day next week and take it from there, but I have a feeling it will be really good for G :)

Thanks for the suggestions re. the letter, I did again ask the HV about me applying for it and she said to hold fire just for now, to see how fast the EP pulls his finger out, if in a months time we're not getting anywhere then she will fully support us in applying for it ourselves. I know that means we are hedging our bets, but a month isn't going to make much difference in the grand scheme of things.

I feel so much better, much more centered, I have a trail of thought now that isn't just a patchy mess!

Stark, I will keep your advice about if I ever feel let down by the service providers, I saw something you wrote on another thread, the stat about 1 in 5 people with Autism try or do kill themselves by the age of 21, and I can promise you this, that is not going to be my son, not while I have breath in my body.

Thank you again everyone, I think today has been the hardest yet, keeping in mind it was only Monday afternoon the HV was here for the first time, I think it has only just started to properly sink in today, I was in bit's this morning, but now, I don't know, I am just determined to make sure that George has a great life. He will love his life, I am going to make sure of it.

NJ You need to do what is best but people are funny ole things and their attitude and behaviour is extremely influenced by the climate and political context.

A statutory assessment isn't something that you do as a threat for someone not pulling their finger out, it is something you do to ensure your ds is having his needs met regardless of who the people involved are.

What if the EP 'does' pull his finger out? Does that mean you shouldn't apply?

You need to do what you feel is right but I can tell you that I have not come across one single poster here who hasn't regretted not applying for a SA sooner than they did. Be aware of that at least.

hth

Theres a boy in our main steam school - very intelligent but very much on the autisitc spectrum.

Just send the letter it will take at least 6 months and probably nearer 10-12 to get a statement. The EP will have lots of time first they decide whether to assess then if they do assess they collect evidence. The HV probably does not know how sly LAs can be. You can always voluntarily agree an extension to the time limits. They will write back inviting a parental statement that's when you need to know cop. For children who have not been in nursery you must show severe and complex needs which are unlikely to be able to be met from a nursery's own resources. In theory young children just need one overarching report but don't count on that. Ask the SEN officer or nursery what support the nursery can access without a statement sometimes there are cut off dates for funding each term so you need to know what to do and when. Glad the nursery sound positive. This is Marathon so pace yourself. Give yourself time too.

Thanks again everyone, we have decided to go for it and send the letter, but unsure as to where to send it to? LEA? The Ed Psycologist? (I do have his address) HV had never heard of being able to do it yourself, but said anything that helps it go even slightly quicker is worth a shot.

Also, I have downloaded a Family Pack from Early Support, I'm sure you'll all be aware of what it is, but thought that might be really helpful for us to keep everything organised and together.

We are away for the weekend, so won't be back on till Monday, but if anyone can answer where we send the letter to, that'd be great :)

Thanks again guys :)

P.S. meant to say, sound's like the HV went away and found more out about requesting the assessment, maybe she was just covering her own arse? Who knows?!

Ni NJ, you would need to send the letter to your local education authority.
Hope you have a good weekend.

NatalieJane I just want to say that you're doing all the right things and with the right attitude.

The key is to keep going at a steady but determined pace with the highest expectations of both provision and your ds.

You sound like someone who can do this naturally. Many of us have had to learn.

and a nice bit of healthy sceptisim about professional advice.........

StarkAndWitchesWillFindYou

Is this you Star under yet another guise?

yeah. Why what have I done now?

Just that I an't keep up with all your name changes.

Are you the bloody bacon slicer as well?

No, think that is peachy but not sure.

Tis my halloween name...... I tried to keep my name in it just for you

We Aspergics don't like change.

I'd just got used to your hiding from the LA prior to SENDIST name-change with all that Waspy stuff

As August was particularly inclement this year I'm sticking with my name.

And who's this Pumpkinblahblah person?

TotalChaos. Her name is in there somewhere too.

I have an idea. When we change our name on the open board, we should be allowed to tick or nominate people who will still see our names as they are originally.

Does that make any sense?

Why do you mention us particularly?

Is it because we stomp all over here as if we own the place?

No

I just don't understand the name and it's driving me nuts.

I thought at first it was Stare and the ... but why Stark

Stark is not a verb that I know of.

How do you Stark

Thank God for Claw, Debs and Lougle.

LOL, yeah, fair point. Didn't know you were aspergic.

but.......

coz 'it's dark' innit? (stark)

Wouldn't make sense if it was 'stare'. Why would witches come out if you stare?

Unless it was to correct you on your good grammar!

Now I 'could' have just said 'TisDark' but then it wouldn't have 'Star' in it.

Thanks for the explanation -I understand now.

But if you'd said 'Tis Dark' I'd probably have realised it was you as you're the only one on here who regularly uses tis