Autism

[Cygnus The God Of Balance]

Wow...where the hell have I been. My last visit was Sept 18?? I'm sorry. I've just been swamped at work.

 

Anyway, glad to catch up with how Stephen is doing. I loved your story about the "Best of poo-poo watch" That's priceless.

 

Tony's been good, but his mom's house had an outbreak of fleas which have feasted on poor little Tony. He's got bites all over him. He was at our house last night and I gave him baking soda bath to try to alleviate some of his itching. I also sprayed him with Demoplast. Unfortunately, he itches his bites until they bleed.

 

We're going to sign Tony up for another 7 weeks of gymnastics. He really seems to like it and is getting better and better at it. He absolutely loves the trampoline and he and another Autistic boy get so excited about being on that, and they're both really good about taking turns with the rest of the class.

[Queen of Megadon]

ouch--flea bites! no fun.

 

My son was always a big fan of the trampoline...I was lucky to score one of those small ones with the handle when he was small. My cousin has one in his backyard, and Daniel can literally jump for hours.

 

 

Glad Tony is having fun in gymnastics!

[owlswing]

QUOTE (Cygnus The God Of Balance @ Oct 23 2008, 11:39 AM)

Wow...where the hell have I been. My last visit was Sept 18?? I'm sorry. I've just been swamped at work. Anyway, glad to catch up with how Stephen is doing. I loved your story about the "Best of poo-poo watch" That's priceless. Tony's been good, but his mom's house had an outbreak of fleas which have feasted on poor little Tony. He's got bites all over him. He was at our house last night and I gave him baking soda bath to try to alleviate some of his itching. I also sprayed him with Demoplast. Unfortunately, he itches his bites until they bleed. We're going to sign Tony up for another 7 weeks of gymnastics. He really seems to like it and is getting better and better at it. He absolutely loves the trampoline and he and another Autistic boy get so excited about being on that, and they're both really good about taking turns with the rest of the class.

Caldesene Powder may offer some relief for the itchy flea bites.

 

Glad to hear he is enjoying the Gymnastics. Seems like you just signed him up that first 7 weeks went to quick.

[Lerxster]

[GhostGirl]

Very interesting - thanks for posting. That would certainly explain why kids like Stephen seem to have a hard time processing, and also why he does better with very short, clearly spoken words or instructions - not a lot of extra words.

[nobodys hero]

They are doing a whole series about autism in the local newspaper. My neighbor has a son who is autistic and I know it is a struggle. Today's paper talked about the emotional and financial toll it takes on the parents of the autistic child.

 

GG do you believe in the recent books about changes in diet curing children of autism? I know Jenny McCarthy has a book out about how she healed her child from autism. I didn't know there was a "cure"

[owlswing]

QUOTE (GhostGirl @ Dec 1 2008, 02:23 PM)

Very interesting - thanks for posting.  That would certainly explain why kids like Stephen seem to have a hard time processing, and also why he does better with very short, clearly spoken words or instructions - not a lot of extra words.

I once had a Dr. describe "processing" to the likes of a funnel or strainer - you can only put so much into it before it starts to clog, overflow and cause a mess.

[GhostGirl]

QUOTE (nobodys hero @ Dec 2 2008, 09:17 AM)

GG do you believe in the recent books about changes in diet curing children of autism? I know Jenny McCarthy has a book out about how she healed her child from autism. I didn't know there was a "cure"

It's probably best if I keep my opinions about Ms. McCarthy to myself.

 

As far as the diets go...there is no credible evidence to show that they work. There's lots of anecdotal evidence from parents who say it does work.

 

We tried the GFCF (gluten free casein free) diet with Stephen. It is amazingly difficult to follow this diet...you must remove all traces of wheat gluten (which is in EVERYTHING) and casein (which is in everything ELSE). I followed it faithfully for months - often spending $40.00 on ingredients to make ONE thing (like GFCF waffles).

 

Not only would Stephen not eat 90% of what I made, he started losing weight and having diarrhea. He made no improvements at all.

 

If it works for some kids, great. It doesn't work for everyone, and it shouldn't be touted as a cure, IMO.

 

Also, celebrities who have kids with autism can afford the best of everything...organic food, lots of therapy, etc. I can't do that for my son, and I get sick of people like McCarthy talking about their "cures." I might've been able to "cure" (or help) my son if I had millions. Also, her son has epilepsy as well as autism - he was treated for that and improved. You don't hear about that side of his miraculous cure.

[iluvgeddy05]

QUOTE (GhostGirl @ Dec 2 2008, 02:41 PM)

QUOTE (nobodys hero @ Dec 2 2008, 09:17 AM) GG do you believe in the recent books about changes in diet curing children of autism?  I know Jenny McCarthy has a book out about how she healed her child from autism.  I didn't know there was a "cure" It's probably best if I keep my opinions about Ms. McCarthy to myself.   As far as the diets go...there is no credible evidence to show that they work. There's lots of anecdotal evidence from parents who say it does work.   We tried the GFCF (gluten free casein free) diet with Stephen. It is amazingly difficult to follow this diet...you must remove all traces of wheat gluten (which is in EVERYTHING) and casein (which is in everything ELSE). I followed it faithfully for months - often spending $40.00 on ingredients to make ONE thing (like GFCF waffles).   Not only would Stephen not eat 90% of what I made, he started losing weight and having diarrhea. He made no improvements at all.   If it works for some kids, great. It doesn't work for everyone, and it shouldn't be touted as a cure, IMO.   Also, celebrities who have kids with autism can afford the best of everything...organic food, lots of therapy, etc. I can't do that for my son, and I get sick of people like McCarthy talking about their "cures." I might've been able to "cure" (or help) my son if I had millions. Also, her son has epilepsy as well as autism - he was treated for that and improved. You don't hear about that side of his miraculous cure. Yeah, it really upsets me that she's going around claiming this cure, as if "well, I could do it, you can too!" Reminds me of those people on diet pill commercials where they lose all this weight and keep saying "It's so easy, just give it a try!" I feel like saying to them: "umm...go fug yourself."

[GhostGirl]

I am waiting for the day when autism is treated as a "real" disease or disorder.

 

If Stephen had cancer, we could take him to St. Jude Hospital and get the best care in the world, whether we could pay or not. With autism, the more money you have, the better treatment you can get.

 

I feel so bad sometimes that I haven't figured out a way to do more for him, but I can honestly say that we have tried everything in our power to help him (and some things that weren't in our power).

[Mara]

QUOTE (iluvgeddy05 @ Dec 2 2008, 03:24 PM)

QUOTE (GhostGirl @ Dec 2 2008, 02:41 PM) QUOTE (nobodys hero @ Dec 2 2008, 09:17 AM) GG do you believe in the recent books about changes in diet curing children of autism?  I know Jenny McCarthy has a book out about how she healed her child from autism.  I didn't know there was a "cure" It's probably best if I keep my opinions about Ms. McCarthy to myself.   As far as the diets go...there is no credible evidence to show that they work. There's lots of anecdotal evidence from parents who say it does work.   We tried the GFCF (gluten free casein free) diet with Stephen. It is amazingly difficult to follow this diet...you must remove all traces of wheat gluten (which is in EVERYTHING) and casein (which is in everything ELSE). I followed it faithfully for months - often spending $40.00 on ingredients to make ONE thing (like GFCF waffles).   Not only would Stephen not eat 90% of what I made, he started losing weight and having diarrhea. He made no improvements at all.   If it works for some kids, great. It doesn't work for everyone, and it shouldn't be touted as a cure, IMO.   Also, celebrities who have kids with autism can afford the best of everything...organic food, lots of therapy, etc. I can't do that for my son, and I get sick of people like McCarthy talking about their "cures." I might've been able to "cure" (or help) my son if I had millions. Also, her son has epilepsy as well as autism - he was treated for that and improved. You don't hear about that side of his miraculous cure. Yeah, it really upsets me that she's going around claiming this cure, as if "well, I could do it, you can too!" Reminds me of those people on diet pill commercials where they lose all this weight and keep saying "It's so easy, just give it a try!" I feel like saying to them: "umm...go fug yourself." Yeah, you hear so much about dizzy Jenny and her "miracle cure" for autism, but very little about one of MY sports favorites, Doug Flutie and his son Dougie. From what I understand, Dougie is quite low-functioning; doesn't speak at all, needs others to perform the simplest daily activities for him. He is literally locked in a prison created by his own nervous system, and no one really knows where the key is. They just keep trying to figure out a way to pick the lock.   Think Doug Flutie doesn't have the resources, or the time, to try to "cure" his son? Think he hasn't tried everything already? So how come no "miracle" cure for Dougie?   And oh, man, does Flutie ever love that kid. I've seen interview on TV and in magazines, and even though Dougie doesn't respond much to his family's love, they clearly treasure him.   I'm happy McCarthy's son has improved and mainstreamed, but geez, people like her do more damage than good.

[GhostGirl]

That's an excellent example, Mara. My son is much more like Dougie Flutie (but Stephen is a bit higher functioning).

 

I have no doubt the Flutie family knows the true heartbreak of autism. I've seen Doug on several shows, talking about autism, and I felt a true kinship because he was REAL about it.

 

Thanks for pointing that out.

[Lerxster]

The Philadelphia Flyers are having thier Flyers Autism Awareness Night tonight during the Flyers vs. Tampa Bay Lightning game. Autism Speaks, Athletes Against Autism, The Variety Club and the Autism Society of America are involved. A portion of each ticket purchased benefits the involved charities. The coaches and Vs. crew are wearing pins.

 

http://flyers.nhl.com/team/app/?service=pa...HLPage&id=27961

 

I'm a little late or I could have promoted. Too bad I didn't know about this sooner, I would have tried to go. Very cool none the less so worth mentioning even late.

[Queen of Megadon]

QUOTE (GhostGirl @ Dec 2 2008, 04:35 PM)

I feel so bad sometimes that I haven't figured out a way to do more for him, but I can honestly say that we have tried everything in our power to help him (and some things that weren't in our power).

I'm with you GG...sometimes...well, "if I could wave my magic wand"...you know?

 

i've considered the GFCF diet...but Daniel showed signs before he really had a "diet" to speak of...a lot of what they tell you to remove hadnt even been introduced to any real degree yet when he was diagnosed.

 

And yes, the ones with the millions? good for you! I've even read a couple of books where parents say they have "cured" their autistic children...maybe some, but not all, not NEARLY all, benefit from these treatments.

 

Oh GG--if I had the resources he'd have the most sensory agreeable space in the world, he'd have all the extracurricular services....but we cannot digress.

 

Like you said, we've done all in our power, and sometimes we get little miracles right? I'm grateful for those.

 

And it makes me so very happy to see so many of you supporting and learning about autism.

[nobodys hero]

I know my neighbor tried the diet for his son and he wouldn't eat any of the food.

[owlswing]

Seeing how some recent post have brought treatments into play, I am respectfully wondering what routes of treatments people have tried.

 

Have you stuck with your General Medical Dr., Neurologist, Nero-Developmental Dr. Physiatrist, psychologist or other medical Dr?

 

Or

 

Have you taken the behavioral health route with cognitive therapies, behavioral therapists etc.

 

I know that each child will see progress, obtain help with different Drs. I was just hoping to find out where you seem to find the progress/help or if you need several Dr./therapies to obtain progress/help.

 

[GhostGirl]

QUOTE (owlswing @ Dec 4 2008, 10:18 AM)

Seeing how some recent post have brought treatments into play, I am respectfully wondering what routes of treatments people have tried. Have you stuck with your General Medical Dr., Neurologist, Nero-Developmental Dr. Physiatrist, psychologist or other medical Dr? Or Have you taken the behavioral health route with cognitive therapies, behavioral therapists etc. I know that each child will see progress, obtain help with different Drs. I was just hoping to find out where you seem to find the progress/help or if you need several Dr./therapies to obtain progress/help.

We started with traditional early behavioral interventions - speech and occupational therapy, and also sessions with an autism educational specialist when Stephen was 2 years, 3 months.

 

Not too long after that I read about the DAN! (Defeat Autism Now) movement, and we began pursuing any diet or medical treatment we could afford. We drove to Baton Rouge, LA from Birmingham to see a doctor. We spent thousands of dollars on supplements, special foods, and tests. We did find that Stephen had high levels of lead in his body, and we did DMSA chelation for him. His speech did pick up after that, but since his standard therapies were still continuing, we can't say what brought about that change - perhaps his brain developed more on its own.

 

We have also seen a pediatric neurologist who disputed one DAN! doctor's claim that Stephen was having seizures. He helped us find a medication to help Stephen sleep.

 

In short, we have done just about everything except hyperbaric oxygen therapy. There's no way Stephen would stay in one of those chambers, and we can't afford it anyway.

 

I believe that every parent should decide how much to try. We didn't want to look back and wish we had tried something. We can honestly say that we've tried just about everything. In the end, Stephen has progressed and improved most (in my opinion) with consistent one-on-one therapies and also by interacting with typical peers. He loves school and is happiest when he is in a structured environment.

[owlswing]

QUOTE (GhostGirl @ Dec 4 2008, 11:49 AM)

sessions with an autism educational specialist

was this though your school system or did you find them on your own?

 

& Thank you - I'm finding from speaking with people one of the big hurdles is finding the right routes to take most specific to their childs needs.

[Queen of Megadon]

QUOTE (owlswing @ Dec 4 2008, 12:18 PM)

Seeing how some recent post have brought treatments into play, I am respectfully wondering what routes of treatments people have tried.

Daniel was evaluated at 19 months and was found to be "severely delayed" We started Early Intervention in our home right away. She came I think 3 days a week to work with him for an hour or so. I still talk to her and still grateful to her!

 

Shortly after his actual dx at 26 months, we started Occupational and Speech therapy in our home. He aged out at 3.

 

I put him in a Special Ed preschool...but then we moved from CT to NY and I put him in one here. They used ABA--Applied Behavioral Analysis--and that seemed to work pretty well. The school wanted to put him on Ritalin, and his Neurologist made me yank him out--best thing I ever did.

 

Since he's been in school he gets Occupational Therapy x2, Speech x3 and Social/Emotional counseling x2. For a year or so, he had Physical Therapy for spatial issues. He is mainstreamed, so he gets pulled out of regular classes for these services.

 

As of this past summer, he also has Behavioral Therapy once a week. He is in school 12 months a year---2 weeks off in August. He was in his regular school getting all Special Needs services with some academic review. Now, the school I send him to gives him Therapy Pool another 2 days a week, as well as travel training and social skills training.

 

I take him to Therapy pool once or twice a week. He goes to Day Habilitation after school every day. I am about to receive Residential Habilitation 2x a week.

 

and yes, i'm exhausted.

 

but he's doing allright...and he's healthy and strong and beautiful...and as happy as a moody teenager can be.

 

sorry so long! I myself didnt realize how much work we've done!

[GhostGirl]

QUOTE (owlswing @ Dec 4 2008, 12:45 PM)

QUOTE (GhostGirl @ Dec 4 2008, 11:49 AM) sessions with an autism educational specialist was this though your school system or did you find them on your own?   & Thank you - I'm finding from speaking with people one of the big hurdles is finding the right routes to take most specific to their childs needs. We have a statewide "Child Find" number that anyone can call - if they suspect a child has a delay. That's how I got hooked up with all the therapies.

[EveryNerveAware]

Just read this story... I can't believe this is happening in our schools !!!

 

 

http://www.cnn.com/2008/US/12/17/seclusion.rooms/index.html

 

If I ever find out that my son has been put into one of these rooms, someone at that school will wish they'd never seen my son. This makes me so angry and it didn't even happen to my child. Putting a child with a learning disability into seclusion does nothing to help the child.

[GhostGirl]

Oh, no.

 

I am absolutely positive nothing like this happens in my kids' school system. I stay too involved not to see something like this going on.

 

But it's obviously happening other places, and it is heartbreaking. I know as well as anyone how tough it can be to deal with these kids...but this isn't the answer.

[Mara]

QUOTE (GhostGirl @ Dec 17 2008, 02:43 PM)

Oh, no. I am absolutely positive nothing like this happens in my kids' school system. I stay too involved not to see something like this going on. But it's obviously happening other places, and it is heartbreaking. I know as well as anyone how tough it can be to deal with these kids...but this isn't the answer.

What bothered me almost as much was reading the vaporheaded comments below.

[Queen of Megadon]

sadly, I've heard these tales before. They do not, to my knowledge, happen in my son's school

 

I did, however, remove Daniel from preschool many years ago because they often kept him in a restraint chair, as well insisted he needed Ritalin. I'm still pissed about that, and it was 10 or so years ago.

 

Thankfully, his neurologist stepped in, and we pulled him out. However, the school did try some aggressive tactics to try to make me keep him there.

 

But kids like ours "get out of hand" and they call the psych ward of the hospital and the cops and take EIGHT year olds out in handcuffs...just happened this past year here in Staten Island.

 

I'm not saying there arent kids with behavioral issues that may indeed get out of hand and be too much for an overwhelmed teacher to handle, but the problem is they lump every kid with a disability together, and just expect kids with disabilities to have behavioral problems, but it just isnt so.

 

Its very sad, and its why we parents are so insanely protective. People dont understand our children's outbursts, and they get funny looks and they dismiss them as "crazy".

 

and it hurts, a lot, when people do that.

Edited December 17, 2008 by Queen of Megadon

[GhostGirl]

QUOTE (Mara @ Dec 17 2008, 02:14 PM)

QUOTE (GhostGirl @ Dec 17 2008, 02:43 PM) Oh, no. I am absolutely positive nothing like this happens in my kids' school system.  I stay too involved not to see something like this going on. But it's obviously happening other places, and it is heartbreaking.  I know as well as anyone how tough it can be to deal with these kids...but this isn't the answer. What bothered me almost as much was reading the vaporheaded comments below. I didn't even read them...not sure I should, actually.