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

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blondeambition
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23 Jul 2011, 5:31 am

liloleme wrote:

Blondeambition your sons are beautiful and the way you describe your younger son sounds a lot like my Maddy. How old is he in the video?
Maddy wasnt really talking until after three years old then it was only one word at a time but she could lable letters and numbers on flashcards. She started speaking in two to three word sentences around 3 1/2 -4 but most was scripting and echo. She started more appropriate speech around 4 1/2- 5. I started making videos of her to show her speech progression. Unfortunately some are on camcorder tapes that we are going to send away to put on CD....but I got a digital camera that took video a few days after she turned 5, then a real digital video recorder after we moved here. I have these videos posted on youtube under Aspiemom42 Im going to post the most popular one so you can see, it has over 500 hits. She was 5 1/2 here and she no longer does the throat clearing or "Ummm" vocal stimming. She typically will do a type of vocal stimm for a few months and than change to something else.
Her last video I posted was right after she turned 6 her vocal stimm then was "Ok" and "dot com", I need to get in gear, I have videos that I need to edit and post. I post mainly for positive Autism awareness because at the time the majority of the autism posts were of meltdowns. Why people want to film a meltdown and post it on youtube is still a mystery to me!
Anyway the story about your son getting upset when you dont open the doors to the car correctly sound so much like Maddy. She is very ritualistic and I know that it is how she feels safe, by doing things the same way everyday. Like she has certain rocks that she has to step on and certain poles that she has to touch on the way to school. I always make note when she is very obsessive about this or when she sometimes just forgets to do it, it tells me a lot about how she is feeling that particular day. If her rituals start to interfere with life like when she had to count EVERYTHING then we have to redirect her and we have gotten good at this over the years. Its sort of like picking your battles, somethings, like the rock and pole touching do not interfere with life so its not a big deal.
Anyway, here is her video. I love the very first one I put up even though I had my Aspie behind me making a bunch of noise because he wanted to get past me but he would have interfered and caused her to stop dancing. You can find the first one under my name or even under Autistic Princess, its fuzzy and dark but adorable all the same. So here is the one I did last October right before Halloween....our first here in France.
[youtube]http://www.youtube.com/watch?v=JpFSlnhd2M0[/youtube]

I think that Maddie is like both of my sons, actually! When I read the first part of your post about her speech, I thought, this sounds like my older son, Ben, with classic autism. When I read your second part about the obsessive behaviors, I thought, she is like my younger son, Heath, with the OCD and probable AS.

I think that in the video, she actually seems more like my younger son, though. She seems to move her body more and be more naturally outgoing than my older son.

Anyway, she is very cute, and obviously, very loved! It is nice to attach an image and a voice to your posts.

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www.freevideosforautistickids.com is my website with hundreds of links and thousands of educational videos for kids, parents and educators. Son with high-functioning classic autism, aged 7, and son with OCD/Aspergers, aged 4. I love my boys!

DazednConfused
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23 Jul 2011, 5:38 am

I did the chocolate coating myself - just melted a few chocolate buttons in the microwave and dipped the pills in by hand. They weren't too pretty and he didn't like the look much, but fortunately he has gotten confident enough about swallowing that he gave it a go. The chocolate is only to stop the bad taste long enough for the pill to be swallowed - and I used white cos he doesn't actually like chocolate, and I wanted it to be visually similar to uncoated pills so that we might eventually make the final step to uncoated.

That MRSA sounds nasty, your poor child. What a cutie your daughter is! I haven't watched any of your videos yet Blondeambition, but must do at some stage.

Wreck-Gar
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23 Jul 2011, 10:31 am

liloleme wrote:

I post mainly for positive Autism awareness because at the time the majority of the autism posts were of meltdowns. Why people want to film a meltdown and post it on youtube is still a mystery to me!

Yeah I've seen those. I guess the point is so parents know what a meltdown looks like? Anyway I watched many of your videos, your daughter is doing very well!

My son is just starting to speak communicatively (asking for food and toys) but sometimes he gets stressed and reverts back to crying and screaming.

Anyway we had a good day today, we went to one of the big shopping districts here (think Times Square) and no screaming, crying or anything the whole time. Even went to a new restaurant and he ate a new food, using the fork! Restaurants can be a challenge because he sometimes won't eat the food and spends the whole time standing on my chair behind my back!

blondeambition
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23 Jul 2011, 6:07 pm

I forgot to answer lilome's question about my son's ages in the videos. The videos were taken this week, so my older son is almost 7 and my younger son (the blond in the first video) will turn four in October.

cyberdad
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23 Jul 2011, 9:24 pm

blondeambition wrote:

Actually, the Prozac was first prescribed by a pediatric neurologist and then, when I changed to the child psychiatrist, he kept my son on it. I have actually never had my son's pediatrician do anything more regarding his issues other than write a note to the school district saying that he needed services.

That's interesting, I thought perhaps the manufacturer (Eli Lilly) is curtailing marketing this drug for children in order to protect itself from future (possible) litigation. The website did refer to US regulatory authorities restricting the age group but this may have been a recommendation rather than a directive?

blondeambition wrote:

Risperdal is actually FDA approved for treatment of autism, but with its side effects, many doctors look in other directions and try a strong drug like this as a last resort.

The side-effects for Risperdal is quite scary, certainly looks (on appearance) like an "adults only" medication.

blondeambition wrote:

My son currently gets 10 mg/day. He was up to 20 mg/day at one point, and it seemed to be making him hyperactive without better control of his symptoms. (He only weighs about 50 lbs.) I therefore decided that some of his behavior issues could not be handled with medication, and that they would have to be addressed by other means.

Yes the website mentioned 10mg/day as the recommended dose for children. I was interested that the higher dose makes him hyperactive? I thought Prozac has anti-anxiety properties so sedates the child. My daughter's hyperactivity is the fuel that drives her to misbehave at school at the moment. Our main concern is her current lack of respect for boundaries (pushing the children and hitting the integration aide) and getting aggressive damaging school work and tearing pictures of the pinboards. Seems to peak just after a long break,

I talked to a paediatrician family friend in West Australia and she thought our daughter is working a strategy to get sent home early from school rather than an un-controlled impulsive behaviour.

blondeambition
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23 Jul 2011, 10:29 pm

cyberdad wrote:

blondeambition wrote:

Risperdal is actually FDA approved for treatment of autism, but with its side effects, many doctors look in other directions and try a strong drug like this as a last resort.

The side-effects for Risperdal is quite scary, certainly looks (on appearance) like an "adults only" medication.

blondeambition wrote:

Prozac is used as both an anti-depressant and an anti-anxiety drug. Most SSRIs can cause some sedation--it varies from drug to drug. Prozac is least likely to cause sedation, according to the book I have listed in the recommended reading discussion. Some SSRIs can cause quite a lot of sedation.

SSRIs do not work for every child. My son's comorbid psychiatric conditions--selective mutism and anxiety--are often treated with Prozac, so that it probably why it works for him.

(At home without meds, he is a withdrawn rabbit rather than the child setting everything on fire and hallucinating).

Some kids are helped by Risperdal (an anti-psychotic like the newer med Abilify), which has been FDA approved for irritability associated with autism. The main complaints that I have heard about Risperdal are dulling of the cognitive functions and making a person a little "zombie-like."

cyberdad
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23 Jul 2011, 10:35 pm

blondeambition wrote:

Ok thanks for this. The pharmaceutical literature appeared ambiguous on the side-effects. I'll have a look at your reference.

blondeambition wrote:

(At home without meds, he is a withdrawn rabbit rather than the child setting everything on fire and hallucinating).

LOL! I see

blondeambition wrote:

Some kids are helped by Risperdal (an anti-psychotic like the newer med Abilify), which has been FDA approved for irritability associated with autism. The main complaints that I have heard about Risperdal are dulling of the cognitive functions and making a person a little "zombie-like."

I think I'll cross Risperdal of my list for the moment.

claudia
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24 Jul 2011, 7:54 am

nostromo wrote:

Thank you Claudia! My wife told her mother today, she was stunned into silence and couldnt believe it but is very happy for us.

How do you find being your sons therapist? I have done it for james succesfully, it is fairly tiring i find. Perhaps especially for us parents because our emotions are mixed in too much.

You're right, I'm almost burned out. I'd like to go on this way but a parent can't do all by herself. And, it's emotionally though. I'm glad becaused he reached his goal, but there's so much work to be done.

blondeambition
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24 Jul 2011, 8:58 am

claudia wrote:

nostromo wrote:

I feel your pain--the burnout. For a long time, I was my older son's only therapist, and he did great, but he is almost 7 now, and with two kids with issues, I'm tired. I could do speech all day, if only that were his only challenge.

liloleme
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24 Jul 2011, 2:24 pm

Are you guys unable to get any outside help at all? If so why is that?

Sorry to be nosy but I dont understand not getting any outside help and I personally wouldnt stand for it. I know Nostromo is down under and I dont know the laws there but in the US there is help you just need to know where to look for it. Blondeambition are in the US? I got my kids, not only diagnosed, but also in home ABA, respite care and summer camp through the Regional Center. You can also get help from Easter Seals. They did make some budget cuts in California and took away our IEP educational consultant and my sons social group. I got the insurance to pay for the social group but actually it was not that expensive, I had to pay first then get reimbursed and even though we were pretty strapped financially I was able to swing it and would have done it even if I was not getting the money back. If we stayed there I would have put my daughter in social group as well, they offered a discount. I was initially told after my sons diagnosis that we would not get any help for him considering he was high functioning but we got one day of ABA and the respite and summer camp. My daughter got 3 days of in home ABA plus her school with the specialized Autism program (we were lucky to live where we did to get this). Even here, although it took a lot of time we are getting a lot of help now, including transportation and aides for both of my kids plus all types of therapy, speech, OT, physical, ABA. Its just hard for me to imagine not getting any help at all, its not right and it makes me angry to tell the truth!

Also cyberdad they hand out Risperdal like candy in the US as I said, while sitting with the Moms of the boys in my sons social group all with Asperger's or HFA they behaved like it was as natural or as necessary as insulin for a diabetic. They were shocked that my son was not on medication.

DW_a_mom
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24 Jul 2011, 2:38 pm

cyberdad wrote:

I talked to a paediatrician family friend in West Australia and she thought our daughter is working a strategy to get sent home early from school rather than an un-controlled impulsive behaviour.

That's how we all felt about my son and his preschool. But understanding that I haven't been following all your conversation and may be completely off base, repeating, or just out in space ... I will share that my son did it, if he was aware at all of doing it (no way to be sure), because he was in serious distress at that preschool. We never realized how much until he was out of it. All from things that we figured weren't "that" big a deal ... But to him, they were. I really regret not just giving him what he wanted. He was scarred.

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Mom to an amazing young adult AS son, plus an also amazing non-AS daughter. Most likely part of the "Broader Autism Phenotype" (some traits).

blondeambition
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24 Jul 2011, 3:04 pm

liloleme wrote:

I saw you mention California. Texas is very different--everything is way underfunded, backward, and disorganized. Supplies are inadequate and out-of-date. Teachers lack adequate training. Public Pre-K for autistic kids is pretty much like Head Start--not much in the way of therapy.

Several of the high tech companies have offices in both California and Austin, Texas, and recently, several parents have moved to the area from California and have been shocked at the condition of services for kids with autism in Texas. One dad said that Texas attitude toward parents of handicapped parents is ,"Up yours."

I have too many assets to qualify for the programs for the very poor, and my son with classic autism currently qualifies for one speech group session a week, and I had to fight very hard for that.

After complaining to principals, the school district head office, etc., I have pretty much decided, "Screw it," I will accept whatever services are offered by my school and insurance and provide whatever else is needed myself.

Washi
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24 Jul 2011, 3:24 pm

In NJ once your child turns 3 you no longer have in home services and are expected to send your child to preschool. I don't think my son is ready for preschool and wasn't impressed with the results of early intervention anyway.

DW_a_mom
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24 Jul 2011, 4:45 pm

blondeambition wrote:

liloleme wrote:

Even within CA it varies widely.

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Mom to an amazing young adult AS son, plus an also amazing non-AS daughter. Most likely part of the "Broader Autism Phenotype" (some traits).

blondeambition
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24 Jul 2011, 7:14 pm

Last year, my son's inclusion support teacher--the special ed teacher that was supposed to help him as needed--did not know what ABA was. I asked her how she was going to address certain behavior issues that he displayed at the beginning of the school year--ABA methods or what? She said that she didn't know what ABA was and that they didn't have anything like that at my son's school.

She also didn't know how to make or use visual aids with him.

DW_a_mom
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24 Jul 2011, 7:16 pm

blondeambition wrote:

We've had minor versions of issues like that, and we're in a pretty big AS cluster. I try to see it as an opportunity to point the professional in my preferred direction

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Mom to an amazing young adult AS son, plus an also amazing non-AS daughter. Most likely part of the "Broader Autism Phenotype" (some traits).

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