General Music Chat

Hey, you've prolly looked at a gazillion of these & know everything there is to know about the subject, but in case you missed something...

http://www.bing.com/search?q=Autism+die ... orm=msnhpm

I stumbled across this & thought of you guys. Hope it isn't a waste of time for ya.

Hey thanks for thinking of us-

Me and the wife went down that road a couple of years ago, as we had joined TACA, and their 'unofficial' spokesperson is Jenny McCarthy.. who claims her son's autism was "cured" by the GFCF diet.

I don't discount the facts - that gluten and casien intolerances statistically are higher among autistic kids, and I have to wonder how much her kid was affected by glutens and how much by autism that the removal of glutens from his diet made him go from severely autistic and having life-threatening seizures to 'cured' (assuming high-functioning autistic or even aspergers)...

So, we tried it, hell, we will try almost anything.. but there was no change in my daughter at all, other than the fact that she nearly stopped eating because she didn't like the food, but after two weeks, we gave up and put her back on her regular diet.

We have worked out with her doctor a vitamin regiment for her though.

I think what it all boils down to is that each autistic child can fall into many different categories between severity, seizures, diet, and best practice teaching methods - if we could somehow develop a system that CAN categorize them based on those (and possibly other) behaviors, then maybe we can start making more meaningful and effective progress.

Right now, we have this "every autistic kid is different" approach, which sounds great, but is KILLING their (and ours) chances of successfully navigating the condition and making progress.

Sorry if I sound like a broken record, but we've been going through hell the last couple of months with her school, because they aren't qualified to deal with her, so they would rather just label her as mentally retarded and send her to the classroom where the walls are padded and the students have been given up on..

Yes, the school "psychologist" decided that our neurologist from DUPONT wrongfully diagnosed her as autistic and re-diagnosed her as retarded. She's lucky I didn't punch her in the face for that. She used her keen senses like watching my daughter for a few minutes and then applying a 'standardized' IQ test on her..

Well, my daughter is non-verbal, so just by not speaking, she automatically scores a 41 on the standardized IQ test.

Now we have to go see a new neurologist and get a 2nd diagnosis and a lawyer to FORCE the school district to treat her fairly... who's going to pay for all that?

Kramer,

I cannot even BEGIN to imagine the road you have been down and the things you have faced, and continue to face.

I admire your steadfastness for your daughter's sake.

She is a lucky little girl to have you.

I think that is all the more true, because you yourself, as you shared previously, had physical features that made people ASSUME you were mentally retarded. So you know, at least, how it feels to be thought of as DIFFERENT and the biases that often accompany that.

In spite of the challenges, both time-wise, emotionally and financially, I believe she could not have been born in a better place. You are uniquely qualified to see this journey through with her, and though it comes at the sacrifice of many of your own dreams and possibilities... There is no greater calling than sacrificing yourself for the safety and betterment of another. Yes, she is your daughter, but in this day and age, that just doesn't always mean much.

I have a great deal of respect for you brother.

You are an inspiration to me, and I am sure, many others.

.

LOL, I think what I shared in another post was that my physical features gave me a "shifty" or "criminal" appearance, and the bias's that accompany such stereotypical reactions...

Thanks though. Myself and my wife both take great strides to do what is best for our child.

We're frustrated right now, because the bureaucrats have ripped the rug from under us and the only real solution is to move to a school district that has the resources to deal with her. The old adage is still true: you can't fight city hall, right? I guess you can same the same for the school board, who in our case, is backing the teachers and psychologist, for obvious financial reasons (aids, autism support, therapists, all cost $$$$$$$ )

We had numerous run-ins with the school system and also the authorities a few times who blamed US for abusing our own son. What it boils down to is nobody really has any idea how to deal with autism. I know there's been sporadic progress in certain areas, like diet. My son has gone through a huge number of changes. He's been on three different psychiatric medicines for years, I think mainly the psychiatric pills were more for the benefit of the teachers to help them cope with my son, make it easier for THEM. Now that my son started having more numerous seizures he's on seizure medication as well. Nobody really has any idea how the different medications react together in the body. I feel like my son is a guinea pig, and in effect he is just that. It's a shame that the parents of an autistic son or daughter have to struggle with the school system, state authorities, doctors, etc. ON TOP of dealing with an autistic child. In fact, in my case it's HARDER for me to deal with the "experts" who haven't got a clue...

My Lord, I didnt realize the problems you deal with. All I have to offer is just a prayer.

Just a prayer ?
In my little world, that's worth more than all the gold on the planet.

If you have just another prayer left send it my way.
Not to make light of my friends efforts or his challenges but.
My extended family could use the blessings at present.[/b]

I feel for you guys.

When my son was in school, they tried to convince me he was ADHD. When I told them it was a discipline problem, they acted like I was an abuser! So, I got him checked out. He doesn't have ADHD after all, it seems.

Now HIS son was reported to the state by the pediatrician as a kid with "special needs" (which, by law, he must do). The state started sending special teachers out to Ian's home to work with him. The program is labelled "Birth To 3." When he turns 3, my grandson will be placed in yet another "special needs" program, more than likely, whether he actually needs it or not. These state-run programs are very jealous of thier funding (like the schools are for thier extra funding for ADHD kids), so it's very difficult to extract a kid from these programs. (I had to nearly get the principal of Ian's elementary school FIRED in order to have Ian removed from remedial reading programs that he didn't need!)



On another note - 6 months after the shunt was placed in lil Jace's head, he fell onto the coffee table last week. We noticed there's like a finger under the skin of his neck poking out, so we assumed it was the tube for the shunt, which had evidently disconnected & is waving around in there.

Took him back to the Dr yesterday, who says the damned tube is still attached! So wtf is that lil thingie stickin' out in his neck?!?!?!?!?!

The doc actually said that if the tube IS disconnected, he may not put it back. I didn't make this trip to the doc, but I'll be making the next one on Friday. Wtf is he thinking? Not reattach the tube? Well, I'll tell ya one thing - if it IS unattached, he'll either put it back or I'll be kicking his frikken ass clear out to California!

So if you don't hear from me over the weekend, please, someone come bail me outta jail!

We had numerous run-ins with the school system and also the authorities a few times who blamed US for abusing our own son. What it boils down to is nobody really has any idea how to deal with autism. I know there's been sporadic progress in certain areas, like diet. My son has gone through a huge number of changes. He's been on three different psychiatric medicines for years, I think mainly the psychiatric pills were more for the benefit of the teachers to help them cope with my son, make it easier for THEM. Now that my son started having more numerous seizures he's on seizure medication as well. Nobody really has any idea how the different medications react together in the body. I feel like my son is a guinea pig, and in effect he is just that. It's a shame that the parents of an autistic son or daughter have to struggle with the school system, state authorities, doctors, etc. ON TOP of dealing with an autistic child. In fact, in my case it's HARDER for me to deal with the "experts" who haven't got a clue...

Yeah... We get questioned whenever she goes to school with any bruises, acts up in any way, and a few weeks ago we got scolded for not feeding her breakfast (she refused to eat that morning, not exactly unusual behavior for an autistic).. and in the case of the other day, they wrote us a letter questioning why her lips had 'spots' all over them (they were chapped.. you friggin morons). The school constantly questions our parenting IMO to keep us on the defensive. The worst is when we go to the doctor's office and my wife gets pulled aside and questioned about how much "time" I spend alone with my daughter. It's not even done with much couth anymore.

/sigh

We had numerous run-ins with the school system and also the authorities a few times who blamed US for abusing our own son. What it boils down to is nobody really has any idea how to deal with autism. I know there's been sporadic progress in certain areas, like diet. My son has gone through a huge number of changes. He's been on three different psychiatric medicines for years, I think mainly the psychiatric pills were more for the benefit of the teachers to help them cope with my son, make it easier for THEM. Now that my son started having more numerous seizures he's on seizure medication as well. Nobody really has any idea how the different medications react together in the body. I feel like my son is a guinea pig, and in effect he is just that. It's a shame that the parents of an autistic son or daughter have to struggle with the school system, state authorities, doctors, etc. ON TOP of dealing with an autistic child. In fact, in my case it's HARDER for me to deal with the "experts" who haven't got a clue...

Yeah... We get questioned whenever she goes to school with any bruises, acts up in any way, and a few weeks ago we got scolded for not feeding her breakfast (she refused to eat that morning, not exactly unusual behavior for an autistic).. and in the case of the other day, they wrote us a letter questioning why her lips had 'spots' all over them (they were chapped.. you friggin morons). The school constantly questions our parenting IMO to keep us on the defensive. The worst is when we go to the doctor's office and my wife gets pulled aside and questioned about how much "time" I spend alone with my daughter. It's not even done with much couth anymore.

/sigh

They actually tried to press charges against us one time. What an embarassment for THEM. About two years earlier than that we tried a trial residency for my son at an institution that is supposed to be the BEST for autism anywhere in the area. After only a few days they told us to come get him because he was too hard to handle. Imagine that. People who are PROFESSIONALLY TRAINED, too scared of my son. I brought that up at our "trial" and said if you want to take him from us be your guest. You will be calling us to come and get him after a few days. Seeing that he weighed another thirty pounds heavier than a few years earlier, they decided it was in their best interest to NOT press "charges" against us. I also told them that if they take him from us we will NEVER take him back, thus costing the state MANY THOUSANDS OF DOLLARS Per Month THAT WE ARE CURRENTLY SAVING THE STATE BY HAVING HIM LIVE WITH US. I am saving the state many thousands of dollars per month, plus doing it for FREE. PLUS I am not PROFESSIONALLY TRAINED how to do it. Any time they even suggest that somehow we are abusing our son it is 100% to protect their own asses. If there's any bruising they don't ever want to appear liable for it, thus continuously blaming it on us. That's how the system works. They use us to save $$$$$ and also blame us to keep their record clean. That's how it all works....