What Next?

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Hopeful
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Joined: 02/12/2009 - 19:00
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What Next?

Wiggles had his initial assessment, and while we still dont know what we are facing, its been confirmed that they are taking it serious as he is showing lots of signs.
Im shell shocked to say the least.  Ive been up all night wondering if its something I did when I was pregnant.  He was our surprise baby and in all honesty when I found out I didnt jump for joy as dd was only 4 months and facing numerous medical problems.

OH is now in denial, he had thought there was something not quite right, but at the point yesterday where they made such a big deal because wiggles hugged them he decided they hadnt a clue.  (All out kids are very tactile, more so dd so its learned behaviour really).

Tbh Im not sure what is to happen next.  We've been told they'll assess him over a six month period in two different settings, thats it.

Is there any questions I should be asking them.  Is there anything I can do to help him in the mean time? 

I had asked them was there anything I could do to help with behaviour management for him that I havent been doing, because Id be the first to admit I find wiggles behaviour difficult at times.  I felt like I was an awful parent even asking but they didnt come forth with any advice, or say anything I havent been doing.

While I knew something wasnt right, I feel so guilty and overwhelmed at the same time.  I cant seem to get it into my head that this is a good thing to be getting wiggles any support he may need.

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ElectronBlue
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Joined: 27/07/2011 - 10:11
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Of course you can't. it was only yesterday! When Alex was diagnosed I was bereft, I had hoped, you see, they'd just tell me I was a bad parent. Bad parenting can be remedied, was my thinking. (I was young and naive lol) But I took about six months to pull myself together and not see it as the end of the world. And you don't have a diagnosis yet so can't start on that process.

There are a LOT of influential people out there, trying to find a single cause for autism and they have not, every theory- or most anyway- has been debunked. And the earliest one to go was that it was the mother's fault somehow. Autism occurs in righ and poor families, black and white ones, nd those with 'good' and 'bad' parentng abilities. You cannot- CANNOT- cause autism by being a bad parent.

The hugging thing. Alex always used to hug peopel at his diagnostic interviews. The point being a regular child will not usually hug a stranger straight off, they have some shyness or reserve. It's a myth that autistics are never affectionate. Alex was a very huggy child, and he had classic autism.

Denial is a typical male response. Women tend to accept things and get on with it, men get angry and deny there's an issue. He'll come around.

Unfortunately it is all too common to leave a diagnostics centre with no actual advice, so its just as well you have us really isn't it? *grin* So mine would be:

For the diagnosis process, keep a diary and write down every oddity, every thing you think 'ES and DD weren't like this'. It buiilds up a pattern, a very helpful one at that.

Read, read, read... websites, and look t Jessica Kingsley publishers as they do lots of autism books. Many children who do not have autism but 'lean towards it' are helped by using techniques that work for full blown autistics. You may be best looking at books for atypical autism, or Asperger syndrome though.

On the other hand, don't believe everything you read. Stuffing your child full of hundreds of supplements a day will not 'cure' him (if he is indeed on the spectrum) and nor will subjecting him to hours of behavioural 'therapies'. Not that I think you would, but, y'know.

And breathe... you didn't cause this, you are on the right track as far as diagnostics go, and we're all here to hold your hand Smile And allow yourself to feel baffled or angry or sad... it's OK.

Hopeful
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Joined: 02/12/2009 - 19:00
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Thank you EB, I just feel so helpless.  I was really hoping they'd just tell me he was boyish, a different personality from es and dd.  They have noted the ADHD and Asperger's in the family and for a change are taking it seriously.  They arent leaning towards the aspergers, and tbh I agree.
He doesnt seem to fit all the boxes.  A lot of the assessments things he could do, which in a way surprised me, but he did them in his own way, pretty much the opposite of what they wanted.  Almost to the point that you'd have swore he was doing it on purpose.  You know the whole preforming monkey thing.  I wont do it because you want me to lol.
But then I have to wonder is that also a sign of the adhd, the lack of concentration the restlessness.
He has so many classic signs then others that fit so many other disorders its hard.

Im angry too.  I had noticed so many signs, the frustration, the headbanging, the struggling with communication, lack of response from him, not sleeping.  They were all dismissed by previous health visitors, and gps.  They were put down to him having a younger sibling, being the youngest etc.

Im lost, and I know this sounds really stupid because even though wiggles is still the same child he always was, I feel like Im in a way losing part of him.  You know the part where you hope and dream before a child is born that they'll do a, b and c.  Now I feel that he'll struggle to do them that he's had something stolen from him.  That even if he does manage to do these things he's going to struggle where other children will find it easier.
The selfish bit of me wonders how I'll cope.  I dont know if I can be a good enough parent for him.  I find him difficult, but knowing he's going to need extra support, I'm worried Im not doing enough for him.

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xxJaneyxx
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Joined: 25/07/2011 - 14:19
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Of course it isn't your fault, so stop those thoughts straight away!

I remember how shocked I felt when the nursery Head mentioned to me that DS wasn't 'typical' - he was my first and although I knew his behavour was different to others at  toddler groups etc, I had no idea ... Give yourself some time to adjust and your DH will come around too.

As EB has said, do background reading if you want and ask as many questions here as you need to.  Keeping a diary is probably the best advice, and/or make notes to take along to all appointments.  Start a file now for all the paperwork.

You and Wiggles (and the rest of the family) deserve to get help and support and the sooner things get underway the better, really, so of course it is a good thing that you are being seen now. xx

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ElectronBlue
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Joined: 27/07/2011 - 10:11
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Those are all normal feelings, Hopeful. It won't feel like that forever. Alex is the delight of my life and he is who he is. I occasionally feel sad for his struggles, but I think all parents do.

And GP's, health visitors etc aren't always the most helpful. Me, I knew there was something up. I rang the doctors wanting an appointment, the receptionist wouldn't let me have one!!! She 'allowed' me to talk to the health visitor though. I did and the HV, who had never met me I might add, told me it was because I was so young and it was down to poor parenting. Yup, she did, the cow. I've never forgotten it. I had to literally beg her to give me an appointment, but at the appointment within minutes she was referring me on and he was swiftly diagnosed- he presented very classically you see, so it was obvious.

My point being that they don't always pick it up or see what is right in front of their noses.

And sometimes we don't either, to be fair! For two years, I thought Alex was just a regular baby. I'd done voluntary work with autistics, and I'd subconsciously called Alex K once and W once- two of the autistic children I worked with. I don't think that was a coincidence, something subconscious was at work there, but like you it took a while to come to the surface. Now in hindsight I can see autism in Alex's babyhood, but it isn't easy to spot in the earliest years.

Hopeful
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Joined: 02/12/2009 - 19:00
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I think the problem with OH is that its his nephew's that are the ones with aspergers and adhd, their mother was an alcoholic and a lot of their other other issues stemmed from that so he's associating their issues with her.  Wiggles' speech had come on great over the past few weeks and I think the OH was pinning all wiggles' issues on frustration because he wasnt communicating and all he needed was a little help with his speech.
Wiggles has been referred to the speech therapist to help him with attention and listening skills.
Ives started a diary already because some behaviour didnt seem right, a lot of the things Id said dd could do and wiggles wasnt was put down to him being a boy and dd a girl and tbh the age difference between wiggles and es is that big that I cant actually remember half the things with him.
The fact that they referred him straight away to the speech therapist for workshopping Im taking as a positive sign that they'll ensure any other referrals he needs are put through quickly.

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JacquiL
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Joined: 26/11/2009 - 11:56
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I remember being told that there was nothing wrong with C, I was just a paranoid parent because I was a nurse - how I didn't kill the GP I will never know. It wasn't until we moved and M's HV who is a friend of mine turned up and listened that the professionals listened too.

Keep a diary, record everything even if it doesn't seem relevant, read what you can, but don't try and make Wiggles fit what you read. Don't stress at looking for a cure, there isn't one and for as many typically autistic children there are, there are just as many atypical 

If I remember correctly didn't we do a list  of things to make note of, look for etc about ASD a while ago or was it about statmenting?

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JacquiL
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Joined: 26/11/2009 - 11:56
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I have to say I am lucky, G has always been supportive and accepting of everything to do with C and that has helped enormously

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Brandie
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Joined: 26/11/2009 - 14:34
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I'll join in too with this lovely little story. My Ys  classic Autism loves cuddles and touching etc but he doesn't know when it's time to stop.
Saturday he hugged a little tree on our way to town and told it he missed it.

After we ound out about Ys I did the guilt thing. It doesn't last long and you know deep down you didn't do anything silly to affect your pregnancy. Trouble with human beans is we want answers.

Quick question about your OH nephews was their mother drinking while pregnant because that can be feotle achol syndrome which canbe similar to autism.

Hopeful
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Joined: 02/12/2009 - 19:00
Posts: 6370

Yeah she drank the whole time her boys are classic case aspergers and one has ADHD.  

The hugging bbit is only recent with wiggles but the reason OH doesn't think she needed to make that an issue is because dd is exactly the same. When we visited a potential primary school for her she hugged a teacher she'd never met and told her she'd missed her, she talks to everyone to the point we step in and remove her so with wiggles it's quite natural learned behaviour.

Im trying to accept that whatever the outcome is wiggles will stil be the same child he was before he got a label, just hopefully it'll mean he'll have the support he needs and I'll be able to understand what he needs to communicate with him better.

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JacquiL
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Joined: 26/11/2009 - 11:56
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It's only natural to be upset when you are told that the child you thought you had you haven't, but actually you do, he's still the same child he always was

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