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Ds1 dx asd do i have to do anything?!

24 replies

samira837 · 06/01/2012 16:09

Hi my ds1 3 years 10 months was dx with autism 3 months a go so new to all this!! Have been reading everything I can find on the disorder and have to say its a lot!!

Just wanted to know if I have to do anything more then what we are doing now( speech therapy autism team and seeing he's dr every so often?!) I just feel that everywhere i look there is ppl doing aba, sunrise program supplements ect!!

He is getting on gr8t starting to talk socialising ect! Or am I being a bad mum?!

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IndigoBell · 06/01/2012 16:24

It is highly likely that the more you do the more progress he will make.

But everyone has different amounts of time and money available, and different approaches to treatments and therapies.

So in the end you have to do what you think is the right thing.

But - no one will help you. Neither the NHS nor school will tell you what you should do.

samira837 · 06/01/2012 16:42

Thx yes that is so true about the NHS!!

I do feel that more speach therapy would do him so much dose anyone know how I can get more NHS or privet and how much would it cost?! A am in sheffield

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creatovator · 06/01/2012 16:49

Hi Samira. Private Speech Therapy can cost £50 a session for a good one. I've just got someone who's finished their degree, but can't get work. She's looking for experience and has offered to work with my son on a voluntary basis. I'm in Scotland though, but it's something you could look into.

Catsdontcare · 06/01/2012 17:13

In a similar position to you. Ds has an independent speech therapist which cost £40 per half hour session. We've been seeing her for about a year and she has been great. Don't get me started on the Nhs speech therapist!! I'm currently reading more than words and will look at getting on their course for patents. It's a lot to take in at the moment and I'm fast getting the impression that it's going to be all down to us to get ds the help he needs.

WilsonFrickett · 06/01/2012 17:24

There's so much out there, some of it great, some of it won't be a great fit for you, and some of it is snake oil I'm afraid. Do your research carefully!

I find it useful to have a priority list of issues that I'm tackling, and then to look at what's the best way to do that. Sometimes that involves 'interventions', sometimes not. So for example, we move house on Tuesday with DS starting a new school so I'm really focused on just supporting him, giving him lots of down time, he's moving to a smaller school and my impression is the work is a bit more advanced so allocating lots of time to supporting homework, etc.

Once that's settled a bit there will be some ABA for school.

Then another block of ABA around Easter to start looking at some of his peer socialisation issues in detail.

But you can see within that there's lots of time when I'm not really 'doing' I'm just 'being' IYSWIM. But having a six month rolling plan helps me feel in control and also helps me recognise when I'm trying to do too much. and remember having a family life is also teaching!

Chundle · 06/01/2012 18:35

Look on the cerebra website they give grants of 500 pound to go towards private speech therapy we had one and was very useful

oodlesofdoodles · 06/01/2012 18:41

Hi creatovator where abouts are you? Would your salt be interested in doing aba tutoring?

oodlesofdoodles · 06/01/2012 18:50

Sorry to hi jack samira.
We are:
Reading a Hanen book (no courses to go on here)
Sending ds to a proactive nursery
Consulting an ABA expert
Reading Carol Stock Kranowitz on sensory processing
Dosing him up with omega supplements
Going to music class
Going to gymnastics class

There was a good thread about peoples top three most useful things they did for asc child. I can't do links on my phone but hopefully someone else will bring it up for you.

samira837 · 07/01/2012 11:27

Hi thx everyone for u replays! I think that this is really what I needed (a kick up my backside!!).
After siting down and looking at the help I get for ds1 from the NHS I realised that its far from what he needs, I have email some privet speech therapist and got replays!!
Now I am looking for aba therapist in sheffield dose anyone know how much and how 2 find someone one that do aba in south Yorkshire?!

Thx

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dev9aug · 07/01/2012 11:35

This what I copied from another thread some time ago. Unfortunately I can't remember the name of the poster. Sorry Blush to whoever it was but thank you, it was of great help and hope you don,t mind me posting it here.

autismandabamum.wordpress.com

If you put that into google, it should pop up.

Here are my (very basic) first steps to starting ABA. I've written it fairly quickly while looking after kids, so excuse me if it's got mistakes in it or if other ABA mums think I've made it too simplified, but hope it helps:

a) read the book "Let me hear your voice" - you hopefully will find it motivational and it will give you the impetus to get going

b) Find a supervisor or a consultant or a tutor - either via word-of-mouth from another autism mum, PEACH, ABA-UK Yahoo group or ABAtutorfinder.

c) Invite them round for an interview. Technically you need a consultant on top of the program (£90 an hour); a supervisor for day to day management (c. £35 an hour) and then tutor(S) - £15ish an hour. But there are so few tutors around that I would grab whatever you find, in whatever combination

d) don't worry about doing 40 hours a week or anything like that. Whatever ABA you can do is better than none, as it starts to improve the child's antisocial behaviours (which get in the way of learning) and to improve their speech/social abilities

e) Take up references from other mums on the tutors you choose, they will be honest

f) Once you have recruited, using whatever money you can scrimp, beg borrow or steal from relatives etc, sit down with tutor and set top 5 things you want worked on (eg mine were speech and aggression), Make sure the tutors know how to motivate your child (eg via a particular toy/sweet/outing). Motivation is key

g) Get going, stay around for the first few sessions to make sure you are comfortable, then gradually fade yourself off the scene

h) Use the time for a break for you, eg a coffee or a swim or whatever

i) Try not to interfere too much. The child will find it difficult at first and may object, as their life thus far has been free of any "work" or constraints. Of course they will moan when someone comes in and dictates the pace, as they have previously followed exclusively their 'own agenda'. Keep thinking - how will this behaviour look , if not tackled, when he is a strapping man of 19?

j) Have regular meetings and updates with ABA team, to refine targets. Make sure you are consistent at home with what they are doing - nothing will work if it's just for 3 hours a day, and then family undoes all the good work the other 9 hours of the day

K) make sure you and the tutors keep meticulous records of progress made, as this will form basis of your case to LA for funding or part-funding

l) Meanwhile, be applying for a statement using the diagnosis of autism

samira837 · 07/01/2012 15:42

dev9aug thx sooooo much!! can i just ask have the aba help for u child?

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dev9aug · 07/01/2012 21:23

No problem... Just passing on advice which I was given.

We have only just started the program in the last couple of weeks so I can't tell you whether it is working or not but I am certainly feeling positive about it. Ask me in a month and I will tell you all about itSmile

chocjunkie · 07/01/2012 22:20

do you get dla? it would probably really help to pay for whatever you decide to do. re aba - we use autism partnership. they are based in leeds. we only run a very basic programm, about 10 h -15h week. i do the tutoring and we only pay for supervision (cannot afford tutors).

samira837 · 07/01/2012 23:27

Hi chocjunkie yes i get dls for ds1 how is it going with u child is ABA helping?....hm....look at the time i have been sitting her for hours looking for a ABA tutor ect in sheffield going CRAZY!!!!
Maby im looking in the wrong place help plz!!!

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dev9aug · 07/01/2012 23:43

There are a number of places you can look in.

  1. Yahoo ABAUK group ( I did not have much luck there I might add but it might be different for you)
  2. Vbcommunity.org.ukv(same again but there is no harm trying) University of Sheffield have a psychology department. Send them an email advertising for tutors and they will be able to forward this to students who might be interested.(they are usually cheaper tha. Experienced therapists but will need training, I got a great response from students where I am, but decided to go with experienced tutors.)
  3. aba tutorfinder.com. (again found some really good experienced tutors from there, but you have to pay to download cvs) www.abatutorfinder.com/uk/search/form
  4. PEACH website.
chocjunkie · 07/01/2012 23:43

DD is making slow but steady progress and aba gives me te tools to motiate DD to earn :) but we only started 3 months ago and only run a very small programme so it s still early days. I think autism partnership cover a lot of the north/north west incl the yorkshire area. might be worth contacting them?

aloso, oes your ds have a statement?

chocjunkie · 07/01/2012 23:44

"to earn", sorry, I meant " to learn"

dev9aug · 07/01/2012 23:48

Oh, btw at the very least you will need some form of supervision, whether it is a consultant or an experienced supervisor, they will have come across a number of cases and will be able to spot any strengths/weaknesses/issues much quicker than tutors no matter how experienced they are. If you are struggling for finances, you can always do some of the tutoring yourself.

creatovator · 08/01/2012 13:45

Hi oodles. I'll ask her. We're in Lanarkshire.

samira837 · 08/01/2012 18:43

Hi so now I have got all the family involved (for funds!!) Now just finding everyone that I needs to be involved!!!

I can't start to thank everyone that have given me the info and a push to do the best for ds1 really want to start ABA before he is do 2 start school in 9 months!!!

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chocjunkie · 08/01/2012 19:42

samira, does he have a statement or at least one in progress?

samira837 · 08/01/2012 20:26

Chocjunkie yes have one in progress appl before xmas.
Had a app with his pead 2 days a go talked about schools and he sad that if ds1 went 2 a main stream school he may not get all the support he need but if he went 2 a special school he might not get the social interactive part off it from the children at the school as many off them don't like 2 be touched ect...hn...is this true?!! If so don't know what 2 do about school as ds1 is social and loves 2 play with other children!!

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chocjunkie · 08/01/2012 22:34

we are looking at a mainstream school with a special needs unit at the moment. maybe this kind of setting would be an option to look into for you??

samira837 · 09/01/2012 11:55

Hi so I'm looking for funding for the aba therapy for ds1 have found some places on the net just wanted to know where is the best place 2 app 2 and how likely is it for me too get it

Thax

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