2 months after asd dx and still no real help.......

[mamadadawahwah]

Its been over two months since my son was diagnosed with asd. To date he has received 5 hours of speech therapy and thats it. I wanted to ask you who have toddlers with the dx what kind of therapy you get or are paying for?? It seems not much is going to happen for my son unless i dig deep in the pocket, do it myself or wait until he is school age.

Does anyone know what the best to expect is, regarding help for a toddler?? Its absolutely ridiculous. He wont get O.T. till this February. Music therapy may or may not happen. Speech therapy is rather useless at one hour a week (my son is non verbal)

I thought there was supposed to be a National Autism Plan in place. Obviously its not working. I and I am sure, many many others are being left in the lurch with young and not so young children. Its absolutely horrendous. To compensate i take my son to mother toddler groups (he is yet too young for a playgroup). I just feel all this precious time is going by. I enlisted the help of an ABA specialist who came to assess what I was doing. At £50.00 per hour, however, this is really difficult too.

[mamadadawahwah]

Hi socci. Yes the fellow who came out to see me was a consultant thought working for a charity. He was an arsehole and i didnt like him one iota. Very pushy, very dogmatic and it just wouldnt have worked. I need someone who is willing to listen to me first and then work with my son. I will keep trying.

[mamadadawahwah]

No, i just assumed. I think i will write a follow up letter to his organisation.

[coppertop]

Sadly so much seems to depend on luck and being in the right place at the right time. When ds1 was dx'ed he was getting one session of SALT a month. He never did make it to the top of the pre-school OT list so any OT help he got was from the pre-school staff. Ds2 was assessed just after his 2nd birthday. He started SALT a few weeks later and has 1hr of SALT per month. He also went to an OT sensory group for one hour per week but this has stopped now that he is in pre-school.

The biggest help I found (with both boys) was from the portage service. Ds2's portage worker always has lots of good ideas for things to try out and does a lot of liaising with other professionals for us.

[Davros]

Hi mmddww, I thought I'd ask you more about the ABA option on this thread. I didn't realise that £50 was for a consultant which is prob OK but what about ongoing, day-to-day??? Are you setting up a program or thinking of it? You have to be soooooo careful with who you get but there are some good people out there who need to make a living but know their stuff and really care about the children. I know you are in NI so that might limit the choices a bit but I think there must be some choice of provider/consultant. Have you joined Peach? Not that they are a great organisation imo but it is the best port of call for into on Svs providers and consultants. Have you joined ABA-UK, the Yahoo group? Also leaves something to be desired imo as not ABA-specific enough given its brief and you could also try PACE for info. I saw on the other thread that the Unis won't allow their students to work or something. I've always used students and their unis have no idea what they are doing, they could just as easily have part-time work in a bar. I don't know if any of this helps, please ask more questions on setting up and running ABA if you need to and I will attempt to respond. RnB, Monica2 and JakB also run progs as well as Socci, HITC and Jimjams do part-time ABA and InternationalGirl did some ABA before she left for other shores. I've probably forgotten someone!

[mamadadawahwah]

Hi Davros. Thanks for your input. Yes, i have to say i am gearing up towards setting up an ABA prog at home. I was reluctant at first but have seen some videos of kids being taught it and it looks effective. I was more geared towards floor time but my son is beyond that now i think. He needs some core attention in other areas which i just dont have the ability to do right now.

I have some contacts but they are so darned "evangelical" it really puts me off. Ok, i am evangelical too (not that you would notice from mumsnet threads he he) but when it comes to my child I want the best and need to make the right decision as we all do of course.

I am really interested in the CARD method and have been furiously looking up and printing out stuff on this approach. But when it comes to actually carrying it out, it stymies me. I have to face facts, i am not a behavioural therapist. I know i can do it, i just need some basics first. I will look at the sites you suggested.

I am just so frustrated, despite the fact that here in N Ireland there is a very large autistm group, that no help exists for someone in my position. It stinks, it really really stinks. Are you in N Ireland Davros? If so, what route did you take/taking when you started out?

[Davros]

No, I'm not in NI. CARD has a very good reputation in the USA, I'd say reasonable in the UK.
When we started out it was no better (8 years ago) but you'd think things would have progressed a bit more in that time wouldn't you? In fact, in some ways, its got worse as the LEAs etc have got better at refusing funding for (e.g.) ABA and have also set up more provision themselves. More provision is good but not if it isn't what you want!
We had the obligatory 6 sessions of SLT, got put on waiting list for Portage, no OT, no contacts or support groups, no Earlybird then etc. In those days no proper CDC or multi-disciplinary assessment either. No info about statementing, got that from another parent. The NAS gave us Gilly Baird's phone number which was really good and helped us get funding for our prog eventually.
We set up our home prog as there was NO OTHER option, which people don't realise! Our DS was 2.5 and no way could he function, never mind learn, out of his home environment. Not that there way anywhere for him to go other than m/s nursery and I won't even send DD (NT) there at 2.5!!
We got funding for our home prog after paying for it ourselves for nearly a year, we didn't go to Tribunal although they pushed us to see if we would and then gave in.
For the first 1.5 years of ASD/ABA I knew only 2 other parents (no MN then either!) and now everyone says to me "oh, you know everyone", well I bloody didn't! Mind you, the ability to network and get info is a double edged sword!
So the advice is still the same, get a programme going (it doesn't have to be fulltime) and then go for funding. You CAN'T do it yourself and you shouldn't, technically ABA should be done by a mixture of people, but I don't think a parent can do too much of it on an emotional level although its prob good to do some.
Blah blah, sorry that was long!

[mamadadawahwah]

Thank you davros. I am in pain thinking of what you must have gone through. I wonder what it will be like in 10 years from now? Any different? I sure hope so.

I also didnt know that one could potentially get funding for an ABA programme. Can you provide hints on how to "start as you mean to go on" regarding this? My head is busting with this information. Every day its something else. Every day my son gets a little older with no help!

Who would you lobby to get funding for an ABA programme, i mean who pays for it in the end? At what age do you think they would pay for it? Should i be telling health officials when they ask, that my son is "worse" than he is, just to get extra help?
thanks for all you advice davros. Greatly greatly appreciated. Its just one big arrrrgggg.

[Lillypond]

When can you start the statementing process? My DS has just started nursery, do I have to wait until he is in reception?

Sorry for hijack mamadada

[mamadadawahwah]

I see, so without a "programme" in the first place, one will not get funding for it. Basically you HAVE to start paying for it yourself? To get it started? Yikes, sounds pricey. There is no programme as such here. Thus a program would consist of what? Something you made up yourself with the help of aba professionals?

[Lillypond]

Thanks socci - how do I get started though? Do I speak to his nursery teacher?

[Lillypond]

Thank you socci - another thing to add to my never ending to do list

[mamadadawahwah]

Socci, Davros and anyone else, when does the statementing process begin. My son is only 2.7yrs old and is not in any playschool or nursery. He might be going into a special needs nursery in January or feb when he is 3. Should i wait until then? Can i start this process now even though he is at home? Its just he is not getting help now, when he needs it and january is a long way off.

thanks for link to ipsea, will phone them today.
What if i had a learning disability myself, how on earth would i get through this maze?? God help those parents.

[mamadadawahwah]

Bascially, what i am trying to figure out is who is ultimately responsible for providing services to my son? The paediatrician diagnosed him with a lifelong condition. Is the health service responsible? Social services provide therapy with waiting lists. Are they responsible? There is no ONE group/org that is responsible for services. Obviously, in the end, its us the parents who are responsible to fight fight fight.

[Saker]

I think it is worth starting asap because it gives time to go through the appeals process and start again if necessary before they start school. A friend of mine wanted her son to go to a special school for which he needed a statement. He got turned down for a statement so lost the place at the school and there wasn't time to appeal before term started. So he has ended up at a different school which luckily is good for him, but it might not have been.

We applied recently, Ds2 was about 3y10m when we started the process. We got turned down .

[Saker]

No. Ds2 almost certainly has a place in the unit I mentioned my friend's boy is at for which he doesn't need a statement. In fact it is likely he didn't get one because they knew he had this place, although strictly speaking it shouldn't affect it. So I didn't appeal. The place is from Feb. It is dependent on another child leaving but it is guaranteed for Ds2 if this child does leave. If it all falls through we will reapply for a statement for September although we would also reapply for a place at the unit also.