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Expertise at using the "system" please regarding 2.6yr old son with ASD

(17 Posts)
mamadadawahwah Mon 08-Aug-05 13:45:11

It is now one month since my 2.6yr old son was assessed with asd. One month of crying, worrying, fighting and more worrying.

He receives one hour of speech therapy a week. His OT will not start for another 8 months.

In the last month, i bought myself a new faster computer so i could read up on autism quicker on the internet.That is all i have done for one month. I know more about speech and language training methods than my son's salt. SHe hasnt heard of half of what I have come up with! And apparently she is one of the best.

Anyway, even though I dont feel isolated (so many parents with autistic kids) I feel very frustrated at the fact that any help my son gets is really going to be down to me. Hundreds of phone calls leading no where!

My question to you parents of children with an asd diagnosis is this - do you have tips for weaving your way through the maze of intervention?? If my son could speak, I know he would be halfway there to vast improvement. I just dont know how i am going to get him more speech therapy. Do I write letters, do i make a stink? Does every mother write letters and make stinks? Are "they" sick of mothers who write letters and make a stink?

No point in pissing any one off in the "system" especially when I know i will need them in the future, but as it stands, my son isnt going to get any real help until he goes to play school and thats not till December and thats only for six months.

I am not a speech therapist. I have tried to interpret what all the speech therapy web site say but its hard to do in real life without any real training and experiential back up.

My son and all kids on the spectrum DESERVE all the help they can get and I wont be going cap in hand to anyone. But there has to be an easier way, isnt there? What are we supposed to do with our kids just watch them and hope for the best with very limited services???

Time for a new political party, the Autistic Brain Party or something. Autism just seems to be everywhere, they can't ignore it much longer!

saadia Mon 08-Aug-05 14:45:08

Haven't got any advice, sorry, but bumping this for you

newscot Mon 08-Aug-05 15:29:44

Regarding speech therapy- my DD also gets 1 hour a week. The best thing you can do is ask the therapist what you should be doing at home. The 1 hour of therapy will be of little use if you are not carrying out the same things at home. We really do speech therapy all the time. It is about how you talk to your child and what sort of responses you try to get from them. This all means a lot of hard work from you which I am sure you are doing anyway. BTW my DD has improved "remarkably" (words of her SALT) since we started 9 months ago. She starts mainstrean school this session.
Can't help with the rest of the maze as each part of the country seems to offer different provision.

RnB Mon 08-Aug-05 16:29:19

Message withdrawn

Jimjams Mon 08-Aug-05 16:51:48

Yep- pay for it. otherwise forget it.

Don't pin all on speech though. My son is non-verbal but in terms of eye contact, wanting to interact with us, cuddles, using eye contact to get our attention is less "autistic" than some verbal children I know.

Think ABA is a better bet than SALT for teaching speech and language tbh.

Davros Mon 08-Aug-05 20:01:41

I agree that, not only is Speech Therapy NOT the be-all and end-all, but speech itself isn't (believe it or not). It all really depends on your child's level of severity, level of learning disability (if any) and underlying personality. I know so many ASD kids who CAN speak but DON'T, whereas mine CAN'T but is very spontaneous, interactive etc. Even the hf kids with perfect speech can have severe problems. Not trying to upset you, but go for Speech Therapy by all means but don't expect it to be the magic answer for autism.

Socci Mon 08-Aug-05 20:44:46

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coppertop Mon 08-Aug-05 20:55:19

I agree about speech not necessarily being the key to big improvements. Ds2 has recently had a language explosion but his actual communication is nowhere near the same level. He could quite happily name loads of objects but won't necessarily use those words to ask for what he wants. He has 1 hour a month.

With ds1 the biggest changes came about when he had help with the sensory problems.

Socci Mon 08-Aug-05 21:00:18

Message withdrawn

mamadadawahwah Mon 08-Aug-05 22:19:50

Hi, thanks for the responses. On the subject of imitation, do you mean, if i put a bottle to a teddy bear's mouth and show my son and he does it, is that imitation? Or is this more complex.

My son will do this. He does "give me five", copies me and his friends what they do. I suppose you are all right regarding speech therapy. Its not just speech he needs, its comprehension.

anyway, I am still going to push for it, because at his young age, speech therapy will undoubtedly be combined with vb or aba so the more the better I think.

His speech therapist was very pleased with him on their first encounter and he did everything "asked" of him with no tantrums. He even gave her a big hug at the end of it. This is something even my best mate dosent get! Maybe it was the new toys she brought.

Jimjams Mon 08-Aug-05 22:24:10

"because at his young age, speech therapy will undoubtedly be combined with vb or aba so the more the better I think. "

errr no. Sorry- I don't want to rain on your parade, but it won't be! If you want ABA or VB you'll probably have to sort it yourself.

Imitation is things like saying "do this" then an action (wave/clap/ put a toy in a box etc. Many autistic children find this difficult. DS2 has learned everything by watchign adults and copying them, ds1 doesn't really learn very naturally like that (a bit, but not always).

Socci Mon 08-Aug-05 22:29:39

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Socci Mon 08-Aug-05 22:41:07

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Socci Mon 08-Aug-05 22:50:16

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coppertop Mon 08-Aug-05 22:59:59

Socci - Yes, I think we've been really lucky. Ds1's SALT was fantastic with him and was open to trying different things to see what suited him best. She is now ds2's SALT so already knew him from the times when I had to take him to ds1's appointments.

mizmiz Tue 09-Aug-05 15:36:57

mmddww,so sorry you're feeling despondent.
I am a salt with a dd with a communication impairment,so know what it's like from both sides.
If it's any consolation,you are lucky to have come across MN where you will pick up very important knowledge and also receive sterling support.

I am not going to add too much to what has been said,other than to point out that the girls are right about speech and language therapy not being the be-all-and-end-all and the same applying to speech. I work with some brilliant communicatores who have limited speech (thinking partic. of some children with DS) and others who have a lot of speech but inadequate communication (some of the people I know with Autism.)

SALT provision is patchy and inadequate and many salts are not fully 'up' on things,partly because communication is such a huge subject. Most therefore try to specialise in one area but even then it is hard to keep up,read up,attend courses,while attending to one's monstrous caseload. Not justifying,merely explaining.

It is always good to be honest with the salt about your hopes,expectations and aims and then they can be discussed.
Show her stuff you have got off the Internet. There is some good stuff out there,but also a lot of nonsense. Some trusts have a leaflet outlining questions you need to ask before emabarking on a pioneering (and possibly expensive) therapy such as ...
Can I speak to parents whose children have benefitted?
What research has been done in this field? Can I see it?

Like nearly everyone I see,you just want your child to talk,but there are many aspects to this.
Think of it like weaving a basket. Each frond/branch contributes to the greater whole. Thus you are looking at a 'journey' of working on things like pretend play,joint attention,understanding increasingly complex demands,enjoying books together and so on and so on.

Tell the therapist that you know there are problems everywhere with salt provision and thus you want to know what she suggests in addition. I have a cupboard full of handouts,photocopied artticles (anonymous) case studies,play suggestion,booklists and catalogue recommendations that very few people are interested in.

The ones that are can be amazingly creative. One family club together to buy the child in question something really fabulous and sensory from
the Special Needs catalogue,another parent comes with me on training sessions to talk about things from her perspective.

One of my schools is currently being rebuilt and we have planned a room for parents to meet in,make PECS resources,discuss ideas and so on. MN works just like this actually. I've picked up some great tips.

Don't hide away. Get out there,joing support groups,talk to people,contribute copiously to MN. It is tough (and like you all I have very low moments. At the moment,dd's problems are the first thing on my mind every morning as soon as I wake.)but not insurmountable. Things are changing for people with SN-not fast enough admittedly but we're getting there. There is no one solution,merely a pot pourri of strategies,ideas and intervbentions which will help at particular times in your child's life.

You are not alone,remember that.

mamadadawahwah Tue 09-Aug-05 16:53:05

Thank u for that mizmiz. I had a real long chat with ds's slt and we agreed on a few things. Always good to talk things out.

your comments were very helpful.

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