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Help! Where to start, what to do....??

33 replies

steph007 · 15/01/2010 20:15

Hi all,
I'm still a bit in shock after being told yesterday that my younger girl (2 and a half) may have autism (or do you say 'be autistic'?! I have so many questions now). She's yet to be properly diagnosed, but it is likely, although if so she's borderline - I don't have huge problems with her (as long as she's doing what she wants ) but some behaviour issues are apparent. So i thought I'd just ask if anybody has any general advice, ideas on what happens next etc?

I've had a quick glance through loads of topics on here, but what strikes me immediately is there seems so much to learn, things like statements etc, and I really don't know where to start. Also I feel slightly guilty (don't we all) because this has happened relatively quickly - I referred my girl for speech therapy in Aug at 2 yrs 2 months, got an assessment end Oct and was then referred to a paediatrician for a development check, which is what we had yesterday. So I'm to meet with that lady doctor again in a month or so to discuss things further, but she sounded pretty sure that autism is what she will diagnose. Are there different levels of diagnosis? Do you have to push for a statement? Do I need to see other people/doctors? Wow, that's just the first 3 questions, better stop there...

I did laugh to myself as I associated with one post where lining up blocks and putting them neatly away as per the colours rather than building towers was mentioned - that was my girl exactly yesterday!
Thanks all

Steph
p.s. not sure why but just have to post the following - - well something needs to cheer me up!

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NorthernSky · 16/01/2010 22:07

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NorthernSky · 16/01/2010 22:09

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StarlightMcKenzie · 17/01/2010 05:52

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grumpyoldeeyore · 17/01/2010 21:40

Where to start? My DS was diagnosed at same time as you and there is so much to learn.

Many people recommended Hanen book More than Words, which is a useful introduction and Starlight will be able to tell you about courses near you as she was offered one.

Ask for portage and speech therapy to start now, not wait until you have a diagnosis.

Look at all the options around you: private and local authority nurseries, mainstream and special schools, ABA providers etc. You have to find this out yourself, Local Authorities don't generally tell you about anything other than the cheapest option.

If you can afford ABA do seriously consider it - there is a Yahoo ABA website - you may be able to visit a family who do it - and go meet providers. It has been really positive for my son and I wished we had started it sooner.

If you want the Local Authority to pay for decent provision for under 5's you have to get a statement its the only way to access specialist provision which is what your daughter needs. Maybe not forever, but to maximise her progress now.

Expect things to change. Your child will still make progress and learn, but the autism may start to show itself in different ways as time goes on. My DS had few repetitive behaviours at 2.5 but by 3 they were really frequent and new ones all the time. We were told they would not try to place DS anywhere specific on the spectrum as children could change so much between 2 and 6. When he is 5/6 we should have a clearer idea and also whether his IQ is normal or not. Many experts say they wished that sensory issues had been included in the criteria as most children with autism will perceive things differently. Children can move up the spectrum especially when they are young. There is very little evidence to say which children will make good progress and which won't. What your child is like at 2 won't necessarily tell you how their autism is going to affect them later on.

For DLA / social services download guides from Contact a Family and Cerebra. Apply for everything, autism is an expensive business.

Go along to your local NAS group and meet other parents - they will give you the lowdown on which schools etc are good and which to avoid and about local services.

Talk to people. It can be isolating if your child isn't mixing with the others / getting left behind. Let those around you know whats going on.

Always ask on outings if they do a carers discount! I now go swimming for free when I take my DS.

Take time out for yourself / your partner. Accept any offers of help / babysitting etc.

Don't ever forget that parents are the only true experts on their child. We're the only ones who see them 24/7. If someone is describing a child which you don't recognise as your own, they've got the assessment wrong not you.

I have met many parents in the past 10 months who have told me how their children made great progress and how well they cope. There are horror stories out there, and often professionals are reluctant to talk about the future or offer you any predictions, or have low expectations, so it can feel as though things are gloomy. But there are lots of positive hopeful stories out there from parents who were once in your shoes.

mum2fredandpudding · 17/01/2010 22:05

hi steph, i hope you are ok. you sound amazing. I dont think I was able to shake the clouds from my eyes or ringing from my ears for a good month. My DS was dx'd at the same time as you and we are now 6 months into and ABA/VB program. He has come along further in those 6 months than he did in the 2 years previous. Whilst his speech remains an issue (though there is steady progress - he just had so far to come)he is simply flying in areas that were otherwise 'deficient'. Socially and imaginitively he is not far from his peers (jst sat down with his nursery and his keyworker had tears in her eyes when she spoke about the changes she has seen in the past 6 onths). So I wholeheartedly recommend looking into this at some point in the future. The suggestions sickof made at the top of this thread are spot on. Similarly I would recommend finding a good book explaining ASD (my fav is RObert Schramm's Educating Towards Recovery- which is admittedly VB book, but also tackles the basics of ASD). Do the DLA as it takes an age to see any result from (still waiting!). Im no expert in this but my council refuses to begin the statementing process before 3 years (which is completely daft seeing as early intervention is so so so so important...

but justwanted to say good luck to you and not to let yourself get too bogged down. Itis overwhelming. But it is important to remember that this is a learning disability and therefore something that can be tackled. your DD simply processes things differently from NT children - and needs a little extra help.

steph007 · 18/01/2010 15:07

Hi guys,
thanks so much for this, every extra post is helping in a different way and as time goes on I'm sure I'll get to grips with it all. It does help to hear other people's experiences, even if they're not the same. Am feeling bit tearful today but not sure if that's because I had sickness and d last night and am still feeling rough today, hubby is still away on his skiing trip (not his fault it's bad timing, bless him!) and am feeling guilty as had to put DS2 into nursery for extra time, or if it's just everything catching up.
Starting to get a bit irritated with everyone (friends and family) saying oh well she can't be very bad, she's so happy, must be so borderline - I know they mean well but it's not helping. Although I can understand the reaction as that's what mine was initially, the more I go on the more I think that if it can be spotted in her so young, she can't exactly be that borderline - although I appreciate of course that there are many people dealing with severe autism who would rather be in my shoes. I just want everyone to take this seriously and not try and brush it off. I feel even more strongly now that I'm the one who knows her best and others don't as they hardly spend any time with her.

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StarlightMcKenzie · 18/01/2010 15:56

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waitingforgodot · 18/01/2010 16:39

Steph007, dont worry about being tearful-it a natural reaction. Keep posting on here, ask questions no matter how trivial you may think they are. There is usually always someone on here that can help.

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