RE: Kids w/ Classic Autism, PDD-NOS & Speech Delays

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blondeambition
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01 Apr 2012, 7:13 am

I should say, on a positive note, that the Texas state legislature has fairly recently enacted laws requiring private insurance companies to provide ABA coverage for kids up to age 10. This is good, however, speech coverage and occupational therapy need to be addressed, too.

The biggest problems, in my opinion, are too few slots in the school early interevention programs for children under three, and the programs are of poor quality. Also, the special ed programs run through the schools starting at age 3 are generally of poor quality and not enough speech therapy and occupational therapy is provided at school--two thirty minute speech sessions a week for a nonverbal child and good luck getting any speech services if your child has milder impediments. To get occupational therapy, the child pretty much has to be severely physically disabled, not just have fine motor skills issues.

Effective strategies for teaching autistic students academics--such as TEACCH (see website under "therapy")--are generally not used. Severe reading comprehension problems go unaddressed, too.

The amount of intervention required for just my older son with classic autism pretty much requires one parent to be at home, either working with him or taking him to a bunch of therapy appointments. At my son's school, the majority of the women, including those with kids with severe disabilities, work outside the home and are unavailable to take a child to a bunch of appointments. (Not blaming the women, just saying that more requirements on private insurance companies won't help most of the kids affected.)


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blondeambition
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01 Apr 2012, 9:54 am

nostromo wrote:
claudia wrote:
Wreck-Gar wrote:
Hi everyone. We finally brought my son to the school for placement. It turns out that my old school district has an ABA-based program for autistic kids. He should be starting in a week or so. NOTHING like this was available in Japan.

I should move to USA 8O

We knew some people with an Autistic girl, the father worked for Microsoft here, and went and transferred last year to the headquarters at Seattle specifically because there the company provides SN children of employees with unlimited free ABA, Occupational Therapy, Physical therapy, speech therapy..
If only! We spend about a third of our families after tax income on ABA at the moment and funding a teacher aide to work with him at school. I used to have thoughts of whether we were doing the right thing..particularly if its money that might be best saved and left for our children instead. I know we are doing the right thing now. But its does mean we don't have holidays or go out, and have to make other savings..like I have to repair our cars and things like that, and our mortgage is going nowhere.

I get a bit annoyed when I think of the Govts role in this. The Ministry of Education has authored several studies on the efficacy of ABA as early intervention, and all have come to the same conclusion other studies have..but of course the mantra is there is no money available.
I wonder how this cost to the state compares to that of housing and looking after a completely dependant NV Autistic adult from around age 20 for 40-50 years?
I'd be guessing its a ratio in the hundreds. Its so short-sited :x


By the way, I'm very, very impressed by how much you have provided for your child. Wreck-Gar changing jobs and countries in order to help his child...I know that the others participating in this discussion forum are all very concerned and involved parents, too. I think all too often, parents end up taking on a burden that should be shared more with public schools and government programs. Or kids with the potential for improvement do not reach their full potential because they don't get enough help.

Some people seem to think that a child is solely a parent's responsibility and that any help that he or she gets is a favor to the parent. I see children as human beings separate from their parents with their own rights. Children have the right to effective care, regardless of whether their parents can provide it for them. Some parents who can provide effective care choose not to, feeling that these matters are a school's responsibility. Unfortunately, failure to help children when they are young, no matter whose responsibility it is, is not good for the future of the child, his or her parents, or the government.


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Wreck-Gar
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01 Apr 2012, 9:12 pm

nostromo wrote:
We knew some people with an Autistic girl, the father worked for Microsoft here, and went and transferred last year to the headquarters at Seattle specifically because there the company provides SN children of employees with unlimited free ABA, Occupational Therapy, Physical therapy, speech therapy..


Yeah, I came (back) to Massachusetts for the same reason. There is actually a state mandate here that says insurance companies are supposed to pay for these types of therapies for autism.

That doesn't mean it's easy, though...the insurance company that we chose didn't even know what I was talking about when I asked about it. Apparently I was the first one to ever need it.

Also, be aware that self-sponsored insurance plans (where the company pays everything and has an insurance company administer it) don't have to honor state mandates, only federal. Luckily my company is taking part in the MA state mandate.



Wreck-Gar
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01 Apr 2012, 9:31 pm

blondeambition wrote:
By the way, I'm very, very impressed by how much you have provided for your child. Wreck-Gar changing jobs and countries in order to help his child...I know that the others participating in this discussion forum are all very concerned and involved parents, too. I think all too often, parents end up taking on a burden that should be shared more with public schools and government programs. Or kids with the potential for improvement do not reach their full potential because they don't get enough help.

Some people seem to think that a child is solely a parent's responsibility and that any help that he or she gets is a favor to the parent. I see children as human beings separate from their parents with their own rights. Children have the right to effective care, regardless of whether their parents can provide it for them. Some parents who can provide effective care choose not to, feeling that these matters are a school's responsibility. Unfortunately, failure to help children when they are young, no matter whose responsibility it is, is not good for the future of the child, his or her parents, or the government.


Yep sounds like Japan all right! No such thing as early intervention and they told us that they wouldn't start speech therapy till age 5! Only thing even remotely like ABA I heard about was private, expensive, and sounded traumatizing for kids. Something like they just yelled at the kids till they comply, with the goal being that the kids will be speaking by the time they are ready to enter elementary school. Problem is that the special ed system in Japan is a completely separate school system not integrated with the regular schools. So people do not want their kids to get started on this road and often try to hide disabilities like ASD's.

Kinda sucks it's that way, we wanted our kids to grow up bilingual and my wife's whole family is still there. And I kinda miss Japan, the good points, anyway...the cherry blossoms should be coming out right about now. Maybe I'll be able to schedule extended visits during summer vacations or something...



Washi
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02 Apr 2012, 1:00 pm

Another FREE ipad/iphone app from Toca Boca, today only: "Toca Store". Not my favorite app by them but for free it's worth downloading.



blondeambition
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02 Apr 2012, 2:37 pm

http://www.teleread.com/chris-meadows/l ... artphones/

I saw this article about a technology for windows smart phones with cameras that is coming out soon. I thought that it was totally cool and wanted to share.


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03 Apr 2012, 10:02 pm

I don't want to jinx myself but my son has suddenly started doing #2 in the potty (he would only do #1 before) and he's consistently telling me when he needs to go and has been going days at a time without any "accidents". :o I think the shame of having to be laid down (and held down and scolded because he loves squirming which is not at all funny when it's poop) for so many diaper changes finally got to him.



blondeambition
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04 Apr 2012, 6:10 am

Washi wrote:
I don't want to jinx myself but my son has suddenly started doing #2 in the potty (he would only do #1 before) and he's consistently telling me when he needs to go and has been going days at a time without any "accidents". :o I think the shame of having to be laid down (and held down and scolded because he loves squirming which is not at all funny when it's poop) for so many diaper changes finally got to him.


That is wonderful!

My four-year-old was doing well, then he started having problems again. Things went okay the other day when I set a timer and kept taking him to the potty until he did it, but I don't want to do this all of the time.

He definitely knows better and is choosing to poop and pee in his pants. :(


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Wreck-Gar
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04 Apr 2012, 1:40 pm

Washi wrote:
I don't want to jinx myself but my son has suddenly started doing #2 in the potty (he would only do #1 before) and he's consistently telling me when he needs to go and has been going days at a time without any "accidents". :o I think the shame of having to be laid down (and held down and scolded because he loves squirming which is not at all funny when it's poop) for so many diaper changes finally got to him.


Good for you. My son turns 4 this week and we are nowhere close to this.



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04 Apr 2012, 2:53 pm

Wreck-Gar wrote:
Washi wrote:
I don't want to jinx myself but my son has suddenly started doing #2 in the potty (he would only do #1 before) and he's consistently telling me when he needs to go and has been going days at a time without any "accidents". :o I think the shame of having to be laid down (and held down and scolded because he loves squirming which is not at all funny when it's poop) for so many diaper changes finally got to him.


Good for you. My son turns 4 this week and we are nowhere close to this.


Mine will be 4 at the end of May. We got an earlier start than you because of your move.... it was really a sudden change and improvement on his part, his ability to go #2 in the potty and tell me he had to go reliably practically happened over the course of one day. All of his diaper changes have been like WWF matches (he thinks he's being cute and funny thrashing about but I have no patience for that when it's poo), it was as if he suddenly realized he wouldn't have to go through that if he'd just go in the potty, instead of being pinned down and scolded he gets a high-five and gets to play in the sink - much more enjoyable scenario. And I think he much prefers wearing big boy underwear that he can pull up and down on his own to a bulky cloth diaper. I'll probably put him in a disposable the next time we have to go out somewhere for an extended period where we might not have immediate access to a bathroom, but for now at home he's doing good enough that he doesn't even need pull-ups.



blondeambition
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04 Apr 2012, 5:15 pm

Washi wrote:
Wreck-Gar wrote:
Washi wrote:
I don't want to jinx myself but my son has suddenly started doing #2 in the potty (he would only do #1 before) and he's consistently telling me when he needs to go and has been going days at a time without any "accidents". :o I think the shame of having to be laid down (and held down and scolded because he loves squirming which is not at all funny when it's poop) for so many diaper changes finally got to him.


Good for you. My son turns 4 this week and we are nowhere close to this.


Mine will be 4 at the end of May. We got an earlier start than you because of your move.... it was really a sudden change and improvement on his part, his ability to go #2 in the potty and tell me he had to go reliably practically happened over the course of one day. All of his diaper changes have been like WWF matches (he thinks he's being cute and funny thrashing about but I have no patience for that when it's poo), it was as if he suddenly realized he wouldn't have to go through that if he'd just go in the potty, instead of being pinned down and scolded he gets a high-five and gets to play in the sink - much more enjoyable scenario. And I think he much prefers wearing big boy underwear that he can pull up and down on his own to a bulky cloth diaper. I'll probably put him in a disposable the next time we have to go out somewhere for an extended period where we might not have immediate access to a bathroom, but for now at home he's doing good enough that he doesn't even need pull-ups.


I took the boys to the child psychiatrist today, and told him about Heath's toileting issues. He said that Heath's Prozac dose may not be high enough to sufficiently control his symptoms of OCD (the SSRI dosage requirement for OCD is much higher than for regular depression and other things treated with SSRIs). The doctor told me to increase his dose because kids with OCD can have toileting problems and that control of the obsessive thoughts can help.

My older son, Ben, with the high functioning classic autism is going to try the new drug, Intuniv (time-released guafacine). This med is related to the clonidine that he takes at night and the Prozac that he takes by day. He will stay on his usual doses of Clonidine and Prozac and try a low dose of Intuniv to provide additional help with anxiety. Although it is not a stimulant, it is also sometimes used for ADHD symptoms. (It can also cause drowsiness, and, sometimes, weepiness; however, I decided to accept the free sample from the doctor and give it a shot. )


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Washi
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07 Apr 2012, 1:03 pm

Well I still think he's doing great with the potty but we did have something of an "oops" last night.... After my son had peed in the potty he darted out of the bathroom without his pants on and after several failed verbal attempts to get him to try to put his pants back on I decided I was too tired to chase him down and just let him run around for a bit and forgot about it (it was very late at night), I wasn't too worried about poo because he'd already done that in the potty a few hours prior. A little while later he turned up next to me this time without his shirt too and tapped me on the arm "Potty?", he said. "OK, let's go!" I said and he was doing a happy nekkid autie dance down the hall on his way to the potty when I noticed he was pooing while he was skipping merrily to the bathroom (multitasking). I yelled "OH NO, HURRY UP!" (meaning stop fooling around and run to the bathroom NOW) and thoroughly scared his father who was in the the other room and had no idea why I was yelling. He came running out because he thought I was talking to him meanwhile I'm simultaneously trying to rush my son into the bathroom and trying to stop my partner from stepping in a fresh turd.... Fun times.



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11 Apr 2012, 9:57 pm

No idea where he got it from but my son's newest thing is to pretend he's falling into the potty and say "Help, I can't swim!".



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11 Apr 2012, 10:10 pm

My son has gone Ipad mad. We take it with us, because it helps to calm him to. A few days ago he dropped it on the fireplace hearth and managed to hit right on the data connector port which is the only gap in the protective cover, the iPad is solid aluminium there and it bent the case across the gap but with the aid of judicious application of a butter knife it works fine. The fireplace hearth is cracked where it landed 8O



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11 Apr 2012, 10:58 pm

nostromo wrote:
My son has gone Ipad mad. We take it with us, because it helps to calm him to. A few days ago he dropped it on the fireplace hearth and managed to hit right on the data connector port which is the only gap in the protective cover, the iPad is solid aluminium there and it bent the case across the gap but with the aid of judicious application of a butter knife it works fine. The fireplace hearth is cracked where it landed 8O


Yikes. We have a big foam cover on ours. My problem is I keep catching my son standing right on the screen.



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12 Apr 2012, 8:18 am

nostromo wrote:
My son has gone Ipad mad. We take it with us, because it helps to calm him to. A few days ago he dropped it on the fireplace hearth and managed to hit right on the data connector port which is the only gap in the protective cover, the iPad is solid aluminium there and it bent the case across the gap but with the aid of judicious application of a butter knife it works fine. The fireplace hearth is cracked where it landed 8O


Yikes. I still do not own a tablet but they use them in my son's pre-school so I may have to get one soon.

I noticed that now when he sees a regular computer or game system he tries to do stuff by touching the screen...