Here are some suggested organisations that offer expert advice on SN.
George and Sam(51 Posts)
Another fab piece by Charlotte Moore .
<<In a year's time, George leaves the special school he loves. I'm investigating places for 16+, and have found nothing autism-specific. But we'll muddle through somehow. George wanted to go to Sainsbury's, so I asked him to write a shopping list. First he wrote, "List", and then he wrote, "I will see when I get there." When people ask me what the future holds for George and Sam, that's the only answer I can honestly give.>>
Thanks for the link. It's good to hear an update of George and Sam's progress. I recognised so many of their traits in ds1 and ds2 when I read the book. It's strange in a way to see that although they've changed there are still similarities.
Provision for 16+ is notoriously difficult to find so it will be interesting to see what Charlotte Moore can find for George.
Thanks for the link Janh, it is good to hear about their progress.
ROFL - it's so like life in this house (especially checking the taps for drips, keeping the windows shut - although in our case as ds1 will launch himself through them- and an NT siblings completely unaware how totally abnormal his family life is). I love her style of writing as well- has me laughing out loud. Thanks for that Janh.
I have the book by my bed ready to read!
Has anyone read the one by the woman with two severely disabled boys? Her last name is Spinks I think. Apparently she's taken them on a round the world yachting trip.
Haven't read it mizmiz but think it is called Harriet's Dream by Harriet Spinks.
I haven't read the article but some people on the ABA list I belong to found this article deeply depressing and upsetting. They seem to be the ones who can't yet entertain the prospect of their children being like George and Sam. I didn't dare post, that would really upset them!
I do think some people start out too high iyswim. So although its not denial, none of us want to entertain the worst far in the future, but they start out going for recovery. In my day I don't think we ever thought that way, because there is a good chance you will be disappointed and have another phase like diagnosis. We always talked about "reaching potential", "best outcome".
Huh, I stopped being a Mod because the List Owner said she had complaints about me over the recent MMR thread!! She demoted me but didn't speak to me about it for nearly TWO weeks, although I tried to call her. AND I've always told her I don't agree with Off Topics being allowed to run and run and she never does anything about it AND she has always ignored every idea I've ever given her about how we should manage the list, then tells me that I have just as much power over it as she does and CLEARLY I don't and never have. Rant over!!! I let her off the hook by not saying much and today she's saying enjoy the free time, like I stopped because I'm too busy. Oops, rant was not over!!!
AND she never placed any resrictions or gave me guidelines about what I could or couldn't post. All I said was that I agree with much of what someone said and let's drop it. Rant, ranty rant
Do people REALLY go looking for recovery? I've recently met someone local who's very into doing the best for her very newly dxed little boy. She's starting ABA and is very much focussing on speech, but not recovery. I remember feeling like that. "If he speaks all will be fine". Now I don't really expect him to ever speak, but I also know that even if he does he is still looking at lifetime care.Now I'm in the position where I'd love my child to be as able as George- no chance- but I still like reading about him.
Am I warped? I find Charlotte Moore hilarious.
I'll say it as I don't know the people- but - sounds like denial to me..... Recovery! FGS!
I enjoyed the article too. She makes it clear that her boys have personality which I often think people think autistic people don't have.
People do talk about recovery, we had a talk at school from a woman training in a dietry field, who believed that she could cure her own asd son. I don't mind if thats what she wants to believe but to come to and tell a group of sn parents that she believed she could cure their children was wrong. I think the school were pretty shocked too, as the talk she gave was not what they expected.
People definitely talk about recovery. There are various intervention websites that talk about 'recovered' children, complete with parent testimonials etc.
I'm of the mind that I'll try lots of interventions and see which ones help - eg. the diet has made a big difference to us. But I think it can leave parents thinking that their child hasn't 'recovered' because they haven't intervened enough/tried the right treatment/spent every hour of every day on one-to-one therapy etc.
Oh I know lots of websites talk about recovery, but they're usually American I do think if you take a newly dxed child at say 2 it can be almost impossible to predict whether they will become very hf or not - for example at 2 we were being told that ds1 would be fine, he wasn't autistic, his problems were mild, he had mild language delay. Well ha bloody ha, he's now one of the most severely autistic in his SLD/PMLD school. BUt I can see that at 2 he looked much more able than other children who have completely outstripped him and will lead independent, normal lives. I think its just sensible to bear in mind that autism is a lifelong condition. Although having said that I remember hating being told that.
I agree with you that you can be left feeling it's because you haven't done enough/tried the right therapy, which is partly why I hate the talk of recovery. Children can reach their potential, but their potential may be way more limited that another persons no matter which therapies are used.
I also disagree with messages being too negative. For example my firend was told her dd would never say more than 3 words (wtf?) she talks in sentences now. It much more honest to say- we don't know what the prognosis is, but we know that x, y and z will help your child reach their individual full potential
The book that mizmiz mentioned further down this thread is actually titled Henrietta's Dream. Its written by Henrietta Spink, another lady who has had many, many dealings with Wandsworth LEA over the years.
Sorry to threadjack.
Ah - I was close (with Harriet/Henrietta)!
Oooh, threadjack, I like that!
I am surprised that MORE people talk about recovery than used to ime, you'd think with so much more practice and cases around they'd be less likely to think that. Someone at our support group mtg the other night also talked about doing 2 years ABA (and then her child might be recovered) and I said, don't think or talk like that or your LEA will only fund that, if at all. I don't know what's happened, I think a lot more people have joined the ABA community who aren't serious enough about the boring old nuts and bolts, they just expect some miracle and the same for many biomedical interventions.
Mind you, there certainly are children who would be classified as "recovered" in that a psychologist can't pick them out blind from a group (that was what happened in Lovaas's study follow ups and that study was valid but under very different conditions to how we can all run progs in reality). "Recovered" children certainly do exist and there is a percentage (1%?) that recover totally spontaneously, whatever intervention or none. Any child who does really well starts out with that potential within them imo and a way to teach them and live with them is what is important. I dropped the bombshell (for some) that lots of children with ASD do very well without ABA and in boring old special schools or m/s with support AND many parents don't want ABA although, of course, some do. I find many ABA people very unaware of the wider autism community although all the "old hands" I know are not like that, maybe it comes with time?
interesting davros. I just wish that more people recognised that the absolute limit of what can be reached is inbuilt in the child. I'm still cross with the R4 programme where a mother seemed to be suggesting that the only reason her son has done so well was because she'd put so much effort in, and that if your child doesn't do so well it's because you haven't done enough. grrrrr
I love CM's quirky sense of humour that comes over in her writing:
"The boys' bedroom smells of sweat. This isn't surprising, with two teenagers sleeping in close proximity. It's even less surprising, since I've nailed the window shut to prevent Sam from throwing milk bottles out of it."
"It helps that shopkeepers and waiters can look at the boys, think "care in the community", and brace themselves."
have had me creased up.
I keep thinking that I must write down some of the things that J does and says ...
Socci, if you are at all vulnerable DON'T read it. I had to get DH to take it away and hide it as it totally freaked me out. Mostly because of having DD and her being around 2yrs. CM's second child seemed fine to her, even though she knew all about autism and what to look for, so it was definitely NOT the right time for me to read this book. I'm sure its very good and maybe I'll go back to it once DD is a bit older. I tend to avoid real life autism anyway, I'd rather read a text book!
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