Janna, you mentioned Jenny McCarthy and I just mentally bleeped over it, I've never heard of her. But RIGHT NOW, on Aussie TV, is an Oprah show featuring Jenny McCarthy promoting her new book. How's that for coincidence?
The show isn't over, it's just in an ad break, half over, but I've seen enough to know where she is coming from.
I think this is a matter of semantics and definitions. She describes her son as "recovered" from autism, but not completely over it because he still has little quirks which are the autism showing through. I don't call this recovery, I call it masking it, or adapting. And I Do agree with her that you CAN improve these kids. No guarantees because there are so many variables, but any effort is worth giving it a shot. But you must avoid the guilt if you do not succeed as much as you feel you should. ANY improvement is a bonus and the child deserves as much credit as anyone working with him.
She also claims gluten-free diet helped Evan - good luck to her. They do stress on this show that it's not going to work for everyone. I agree. It IS worth a try, and even now, Janna, I would suggest you consider it in some form (if you can stand it). It worked best for us when I recruited difficult child 3 in his own treatment - he was very strict about watching labels. But that's us. It didn't make any difference for difficult child 3, but I do know it does for some. At least we know now.
She also blames MMR, in their case - and yet she described autism symptoms in Evan from well before the MMR shot was given.
She also lays A LOT of emphasis on her "Mommy instinct" which I feel is overly romanticised. I know I'm another who tells people here, "trust your gut instinct," but to keep saying, "Something inside me just knew the answer," is a bit over the top. Very unscientific, and being scientific is what I'm all about. Hey, it's me.
So while I can see what gives you the pip about her, there is some merit in what she says, if you look closely and maybe re-define the terms more appropriately. And the things she DID with her son - we did the same things. We didn't have the benefit of expensive and rare therapists, we just worked it out for ourselves. Some things we got right, some things we didn't. The play therapy and video modelling looked really good, we did a lot of that. We also used difficult child 3's hyperlexia to help him develop his language.
And we should never underestimate the child himself, and what he chooses to do - so often, the child is quietly developing his own ways to learn how to cope.
I've been lucky because difficult child 3 is also very bright, which has greatly increased his ability to adapt. But he will always be autistic, even if he can adapt to the point where he seems normal. Beneath the surface there will always be that swan legs, paddling as hard as they can to SEEM to be merely gliding on the water.
And MWM, don't be too pessimistic for Lucas. He's only 14, I remember when difficult child 1 was 14 and I was despairing of him ever being able to cope anywhere. He could JUST manage to catch the train to high school, because his sister was there to help him follow the routine. He was intermittently violent, he was constantly challenging or skipping his medications, I don't know HOW he got through his classes and passed each year but he did. He was needing to be reminded daily to go to the toilet to move his bowels (or at least try), told to wash his hair (or I would do it for him), he never did homework and couldn't keep track of his books, his room was a disaster area which was spilling over into the rest of the house. OK, that is still a problem for us.
Now - he's been on disability since he was 16 but is looking for an apprenticeship (ie career) because he wants to get off the pension and become financially independent. He has learned to manage his money, we have recently taken off the brakes on his bank account (and we're hoping he doesn't totally blow the $20,000 he saved while on the pension). He can organise his own travel AND be prompt. He manages his own phone bill, he's planning to buy a car (with the money we made him save).
Support services in Australia - they're not THAT great. At tertiary level, the support is good. It's fairly ghastly at high school level. However, easy child 2/difficult child 2 was supposed to be on support for college this year, and nothing has happened. We finally saw the counsellor last week to find they couldn't even find her file. The year is almost over and we have a lot of problems now to deal with.
As for living arrangements - I consider assisted living away from home to qualify as 'independence' if that is as much as the person can handle. And it is a goal, not necessarily an expected outcome. We aim for certain outcomes but we don't consider ourselves to have failed if the person simply can't do it. Simply trying to get there is enough, if you've reached as far as you can with them.
Assisted living - I think it's sort-of available, but hard to get. Most people simply live at home with parents or a sibling, or (horrors) alone. A man up the road from us is living alone since both his parents died. His father did everything for him, took him everywhere with him, they would go on fossil safaris around Australia and around the world. His father was a wonderful man, the whole community adored him. His mother was quiet, never left the house and died early one morning. Her son found her. HIs father was suffering from cancer, but never let it stop him. He just took his oxygen bottle on safari as well.
Then his father died. This man is now late middle age, he has had a couple of live-in carers. I'm not sure of the arrangement, we do have a Carers Pension which you can get if you care for someone with a disability, for 40 hours a week or more. It's an income option for people who are struggling in life. The first live-in carer tried to get him to sign over the deeds to the house. Luckily our friend is a lot smarter than he seems and immediately told someone at the church, who tried to make out our friend was lying (which, like most autistics, he just doesn't do). The 'carer' got the boot.
The next carer was old and not well himself, he is now in a nursing home with cancer and dementia.
Meanwhile our friend is now living alone. People drop in to see him, they get him to go to church where he gets a meal. He visits his sister, he can get himself from place to place, he has no dress sense though. His favourite outfit "for best" is a pair of red shorts, hot pink Sloggs (like plastic sandals for gardening) and a pink shirt. If it's winter, he puts on a woollen sweater, usually a blue-grey colour. It often has holes or food stains. We don't mind the food stains - at least we know he is eating. But he's still wearing shorts and sandals, even mid-winter.
He's not had an autism diagnosis, as far as I know his only diagnosis is epilepsy and osteoarthritis in the hip. Frankly, he's too old to have ever had an appropriate autism diagnosis. But too many of his characteristics are typical. His obsession with collecting certain things - he has various outdoor rooms built to house them - and his knowledge of them all, is astounding. You can't hold a conversation with him, unless it is about his topics. He gets on really well with my boys - they understand each other. He is often assumed to be 'retarded' but is actually very smart. Local kids hassle him (until we catch them at it).
He gardens. And is good at it - used to work for the local council as a gardener.
But he lives alone. He is fortunate that his parents put money aside to look after him, and very fortunate that he has such a lovely house. It is simple, but looks over the sea.
I look at him and see difficult child 3 in years to come.
We have aged care - nursing homes or retirement homes. But for young disabled, we have very little. It's a scandal, frankly. Most of our disabled are cared for at home, and the requirements for qualifying for a carer payment or carer allowance are fairly strict. One is means tested. We can't get it for difficult child 3. We do get the other one, but it doesn't even cover medication. It's Carers Week at the moment (I think it may have just finished, actually) and there have been a lot of stories about just how bad it is, and how hard it is to get any sort of government support.
With both my boys, I worry about the depression (especially difficult child 1) and the level of anxiety. Our friend does get depressed, I know, but he copes. He doesn't seem to have too much trouble with anxiety - I think it's part of his adaptation. I remember when he was younger, he was more withdrawn especially when his father was around to talk for him. But I've only known him since he was about 35. He'd be in his sixties now.
Sometimes our kids can amaze us.
Marg
it and see," always following through with more if we found something to work. The labels got us access to services but there really hasn't been much official support; we've done most of it ourselves. There is a lot more I want to get access to, but it's taking time, effort, money and a lot of driving to get to places.