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Post by debutante on Dec 15, 2013 23:32:06 GMT -5
I'm not exactly up on the latest version of the DSM -- but I believe they're on version 5.
It's my understanding that they've already (or are in the process of) revamping the classification of "autism" to include "Asperger's syndrome."
This is causing some serious concerns for me. Those with Asperger's are taking a more defiant stand on the way people should view them. They want their "syndrome" to be see in the same way as a "life choice". This is fine with me -- as long as the two categories are NOT combined.
There's a very well known organization called "Autism Speaks". They certainly DO NOT speak for my son. Autism isn't a trendy life choice for him and I find this organizations ads to be increasingly irritating.
Today I saw one that read, "Keep calm...and flap on." I have been fortunate in that my son is very high functioning. He never "flapped" his hands -- but I know autistic children who do. I don't find these ads the least bit amusing or clever. They are as offensive as hell.
Nor, do I appreciate this organization's attempts to "normalize" the condition. Do they think that such press will make people accept autistic behaviors as normal? Don't they realize that by embracing this kind of tactic -- people will assume all forms of autism are "lifestyle" choices? If it's a "lifestyle choice" who is going to want to fund research, if it's no longer going to be seen as an illness? Idiots!
Worse yet is their absurd, "autistic of the day" story wherein parents write about how they discovered their child was "different". Funny how they always seem to pick someone who basically says, "No biggie, love conquers all. " I should send them MY story about the day I realized I had a serious problem. It would curl their hair.
I want to write this organization so badly and tell them that I find them idiotic in the extreme. Autism isn't a "choice". It doesn't go away. It affects every aspect of family life. And yes, you love the person in spite of it -- but I will be damned to hell if I will EVER say that I'm glad my son is this special little autistic snowflake. I'd give anything for him to be like every other man his age. And the more honest among us, would say the same thing.
I have to wonder what bunch of idiots revamping the DSM haven't bothered to think this "combining classifications" through. And I hate this organization for taking this tactic on the basis of this classification.
--Debutante
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Post by tricia on Dec 16, 2013 19:33:23 GMT -5
Dear Deb,
I agree with you 100%. In fact, I understand what you're saying SO well that I got all (and am still as I write this) throat closed, teared up because it makes me think of everything Mylee will never get to do. I've seen the bumper sticker you're referring to and I thought it was asinine. I wanted to get out and say "So you think that's CUTE? You think it's awesome that these poor kids flap their hands uncontrollably? Seriously? How about when they grunt because they can't speak, or when they literally pull their own hair out-yeah that's adorable. Or wait...I've got one, how about you make bumper stickers that read 'Keep calm...you'll never walk or talk'....yeah, that sounds good."
There are different "degrees" of autism. Mylee has about the worst. It's no more of a *choice* or *cool* than a child being born with Down Syndrome and honestly are the people who support all of this crap parents of autistic children? I ask because five years ago, honestly, I might have thought what they're *trying* to do was ok. I wouldn't have understood you the way I do now and I can't believe that someone who actualy lives with it and watches their child deal with this could try and make it seem like it's the *in* thing. Mylee will probably have to wear a diaper her entire life...I guess that's all the rage as well. People are so stupid.
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Post by debutante on Dec 16, 2013 21:21:47 GMT -5
Dear Tricia:
This is going to be more in the line of a letter, than a post. I'll probably write it in several "installments" -- but your response made me think of a few things that I'd like to tell you.
First, there isn't a doctor alive that can determine the long-term limitations on your granddaughter. Every case is different, and a lot depends on early intervention. Having walked through burning coals (metaphorically) in order to do all that I could do for my son, I think I am in a position to tell you some options that are available that worked for Jim.
Most IQ tests are verbal. Most autistic children are non-verbal -- so getting a baseline IQ isn't easy. That doesn't mean the child has any less capacity to learn simply because these children can't tell you they, in fact, do learn. Educational systems are based on the assumption that unless one can be "tested", there's no validation that learning has taken place. Take heart -- this concept is TOTAL CRAP.
When Jim was around 18 months old -- I began to "fight the good fight". I won't go into how I discovered he had problem -- that is a story you don't need to hear. But suffice it to say that his lack of verbal development bothered me. My pediatrician tried to convince me that I was borrowing trouble. But I felt that if there was a problem, I wanted to be on top of it ASAP. So he began speech therapy around that time.
The next step I took on my own. I recall everyone around me viewing me with pity because I was determined to teach my son to read. My reasoning: If he never talks, he will at least be able to write me notes. Everyone thought I was off my rocker. I bought a dozen Dr. Suess books – and every day I read to Jim for an hour. I would read the same book over and over again for weeks before I changed to another.
I made a point of reading each word very slowly. And I pointed to each word as I said it. The end result of this – was that Jim could read before he was 2 ½. Of course, his doctors and therapists tried to convince me he was reading without comprehension and that I had trained him to sound out phonics. I said, “Oh, really?” My purse was lying on a couch on the other side of the therapist’s office. I asked for a pen and paper and wrote: Jamie, go get mommy’s purse. He got up from the floor, walked over to my purse, walked back to me and handed it over. I thought the “experts” were going to pass out on the floor.
So here’s this non-verbal 2 ½ year old who could follow written instructions. So much for assuming intelligence goes hand in hand with being able to speak.
By the way – Jim was mute for the most part. Every once in a while, he’d demonstrate echolalia. He was eight years old before he began to talk – and that was the day after an experimental procedure that the doctors told me I’d be wasting my money on. I’ll tell you about that in the next letter.
Right now, I want you to think about teaching Mylee to read. You have nothing to lose.
Love,
Debutante
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Post by debutante on Dec 16, 2013 22:03:10 GMT -5
PART 2 Dear Tricia: Jim is already in his late twenties. However, I assume that the State of Illinois still has to comply with services. There is a pre-school program for children with disabilities. Part of it is speech therapy – I believe they also do some fine motor and gross motor skills work (Jim didn’t need those – so that’s why I’m unsure) . It’s a five day a week program and if memory serves, about a half day. My Dad used to take Jim to the school, but I am fairly sure they provide transportation if necessary. I don’t recall the exact information offhand. Contact Easter Seals and they should have the information you’d need to take advantage of this program. It’s cost-free. I considered it worth it because it give the family a much needed half day break from autism 24/7. I can’t say how much the program helped because Jim was also getting private speech therapy at the same time – so I don’t know who did what. Easter seals also has speech therapists on hand (I imagine the fee schedule has gone up since then). I honestly don’t know if insurance will cover it. Back when Jim was little – the insurance considered autism an “educational problem” and wouldn’t cover any kind of therapy at all. Now as to speech therapy --- Jim’s private therapist recommended this program for him. I looked at the site and am not sure it’s the same one. Years back, it was considered a speech therapy intervention. From the site – it looks like they’re now calling it a “reading program”. Check with a speech therapist if it still helps isolate individual speech sounds to be better comprehended. There’s a word for it – but I can’t remember it after all these years. It is a “smart” program – which, means nobody except the child should use it because it adapts to performance level. This was very useful --- Jim breezed through it in record time. I only had the scores to go on—because he was still largely non-verbal at the time. www.scilearn.com/products/The single most useful thing for my son was auditory retraining. You’ve no doubt heard the Georgiana tale by now. If not, here’s a link describing the process: soundtherapy.ph/index.php/georgina-thomasThis was considered experimental back when Jim had it done. He was about eight at the time. Of course, every mother hopes the procedure will be “the miracle” that will cure her child. Jim’s doctors thought it was crap and a waste of time. They kept telling me to save my money. I said, “It’s only money and if I don’t try – I’ll spend the rest of my life wondering if this would have helped.” So I signed him up. When the process was completed – I was anxiously awaiting my miracle….and that night I was so disappointed because Jim didn’t say anything. I thought it didn’t work. I took him to school the next day. About 10:30AM that morning --- I got a call from the school secretary. I could barely understand her because she was crying so hard. Finally, she blurted out, “It worked!!!!” It turned out that my son was a lot like Mr. Ed (who never speaks unless he has something to say). That morning at school, he happened to see the school janitor on a ladder changing one of those long light bulbs. His first sentence was: “Mr. Washington, what are you doing?” The janitor was so shocked (everyone knew Jim had been non-verbal to that point) that he fell off the ladder. I hear he then ran through the corridors screaming, “Jimmy can talk!!” And they tell me that the doors of the classrooms all flew open and everyone in the school poured into the corridors to see “the miracle”. Jim has spoken normally since that day. So if nothing else, consider auditory retraining for Mylee. People get different degrees of results – so I can’t promise you what will happen. I only know this was the single most important therapy that Jim had – and I thank God I didn’t listen to the “experts” who wanted to save my money! Love, Debutante
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Post by debutante on Dec 16, 2013 22:14:23 GMT -5
PART 3 Dear Tricia: This last section will be short. The things at this link were therapies that were developed long after Jim was already at his present level. So I don’t have any personal experience with them, but they are available. www.webmd.com/brain/autism/autism-therapies-aba-rdi-and-sensory-therapiesAlison tells me that her university used to hook up students to train for these therapies – so I imagine any major university could refer you to someone who does this in your area if you’re interested. All of this is enough for you to mull over for now. If you need to talk --- or whatever…let me know. Love, Debutante
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Post by debutante on Dec 16, 2013 23:03:42 GMT -5
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Post by tricia on Dec 16, 2013 23:10:58 GMT -5
Dear Deb,
First, thank you so much for taking the time to give me so much information! It's a lot of information and I'm going to need to go back over it again. I did look at the Georgina Thomas link and no, I had never heard of it before. I have to say I'm a little afraid to try that wuth Mylee only because she has seizures. It says the noises are really loud...does it hurt their ears? The thing with Mylee is, you have to be careful. If you accidentally scare of startle her she'll have a seizure immediately. For instance, if you play "peek a boo" with her and you get carried away and truly startle her, her head will drop and she will instantly start seizing. Unfortunately, I found that out the hard way doing just that and I felt horrible. Even in the summertime when we take her swimming...if the water feels cold or like a shock to me, you have to ease her in to it. Her body/brain can't take even the shock of being immersed in water that feels cold because it could make her have a seizure.
Second, I was so excited to read that Jim didn't start talking until he was eight years old! I mean, I'm sorry for you that he didn't talk until then but Lauren's doctor told us that if Mylee didn't walk or talk by the time she was five that she most likely wouldn't ever do either.
My;ee is in a special school five days a week and has been since she was three years old. She's five now and will start kindergarten next fall. Lauren actually went to the school today to make Gingerbread houses with them and observe class time and play time. They have this game they play with the non verbal kids that is kind of cool....they have pictures on a board of all different kinds of things. There are pictures of different toys, a sock, a shoe, just random stuff. They make the non verbal kids point to what they would like to play with for playtime. Well, poor Mylee didn't "get it" at first and ended up with a sock and then something else not very fun to play with for play time but NOW...Now she "gets it" and picks the toy she likes best when they bring the board to her.
I often wondered if Mylee could understand what we're saying to her or abut her or just even to each other. The first time I caught a glimpse of her being able to understand me was when I took her to the mall a couple of years ago. She kept kicking off one of her shoes. I would then run it over with the stroller and have to stop and put it back on her. She did this at least 10 times and finally I had had enough of it and so when I bent down that time to put it back on her I grabbed the back of her ankle, (not hard enough to hurt her but firm enough so that she knew I had a hold of it)and I very firmly said "DON'T do it AGAIN." I just felt like I needed to treat her like I would any of my other kids but at the same time I fully expected her to do it again. Well, I waited and we shopped and I waited some more....she didn't do it again.
She also went thru a phase where she liked pulling her hair out. Lauren dropped her off with me and left quickly for whatever she was going to do and I brought her to sit outside with me and when I sat down and got a good look at her I couldn't believe it! She looked like she had a mullet! I was so upset! I was looking at her head and her hair and trying to figure out what was wrong! I called Lauren and asked what the HELL happened to her hair?! That's when she explained that she had taken to literally ripping her own hair out of her head and Lauren was having a hard time getting her to stop doing it. I could not believe it. She has such pretty hair. So anyway, I made this huge deal out of it. First with Mylee and then she heard me on the phone with her mother. I hung up the phone and swear to you this child looked at me, grabbed a wad of what was left of her hair and smiled as she ripped it out. Well, it didn't take long to realize that the bigger a deal I made of it, the more she did it because my reaction was amusing to her. It was so upsetting to me and the more upset I got the more she would do it. I changed my reaction to simply saying "Don't do it" and smacking her hand once. After about three times, she would lift her hand to her head, watching me the entire time and smiling. When I would stand up to come smack her hand, instead of pulling her hair out she would pat her head softly. She stopped pulling hair (Thank God) and it all grew back but she was so amused by that, to this day when she see's me, I'd say probably 50% of the time the first thing she does it put her hand to her head, pat it and smile.
Anyway, I know you're right. We really can't gage what they're learning and what they're capable of because they can't tell us and it makes it difficult. I do know she understands what's being said though and I try very hard to talk to her the same as I would to any of the kids even though she can't really answer me. Hopefully some day she'll be able to. I actually had a dream about a week ago that she could communicate. She wasn't all better but she was communicating. I hope that was a vision of what's to come.
Thank you again for all of the information. I will be looking in to all of it.
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Post by debutante on Dec 16, 2013 23:34:59 GMT -5
Dear Tricia: My understanding of the theory behind auditory retraining is that the child's hearing is hyper-sensitive. Most people don't hear until sound is 20 decibels. Autistic children hear at far lower ranges. By playing music within a certain range -- it's kind of like lifting weights for the ears. For whatever reason, it raises the level at which sound is heard. I haven't spoken to the woman who did it for Jim since about 2004 or 2005 (I had her do it a second time to see if it would help further). In fact, I really ought to have her repeat it again soon. (Both times there was improvement, the second time less dramatic, but still improvement). I am pretty sure this MIGHT be her present location: Sharon K. Hurst, MS, Epidemiologist Auditory Training and Education Center 12 South 038 Roberts Drive Naperville, IL 60564 TEL: (888) 248-0990 EMAIL: S.Hurst-AIT@worldnet.att.net Private Practice, Certified and Accepting Participants If it's the same Sharon I know, she is a real sweetheart and will answer any questions you have. Here's an article about her too. It's pretty old... articles.chicagotribune.com/1995-08-13/features/9508130039_1_ait-disorders-autism--Debutante
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joan
Member
Posts: 1,407
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Post by joan on Dec 17, 2013 17:30:17 GMT -5
Thank you both for this discussion. Frank, heartfelt, & I learned things I have never thought of before. Both you ladies are very dear to me.
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