Guest guest Posted July 19, 2004 Report Share Posted July 19, 2004 Carolyn wrote: > Hi Annie, > > I really enjoyed the pictures of you and your family, and thank you > for sending them. I love looking at pictures of people, especially when > I am trying to get acquainted with them. That is wonderful that you have > Louie in a good assisted living home, and I thank you for the > compliments, but I don't know what a " refrigerator mom " is. > > Perhaps you can tell me. Sure! Back in the 50s-70s, it was thought by " professionals " that the cause of autism was a cold, undemonstrative, unaffectionate mother. That the mom didn't hold/snuggle with/coo at her child enough or at all. This was called the Refrigerator Mother. It wasn't until a few years before Louie was born (in 1980) that this fell by the wayside, but you will still run into older teachers and others who still believe this to be true. It's a pain in the butt, really. > > Well you know, where you say I raised my son in the age of > " ignorance, " it might seem like we were living back in the dark ages, > but some things I think there is still a lot of unknowns about. It is > because each case is just so different than the next. Yeah, I have a saying: " Atypicality, thy name is autism. " But we know a lot more now that we did even when Louie was first dx'ed in '82, especially when it comes to difference in brain structures. Doctors now, at least the ones I've come into contact with, believe that autism is genetic. So it's not really a mental disorder but a physical difference. I think that's why so many folks take their kids to neurologists these days; when Louie was little, a neuro wouldn't even look at him because " everybody " knew that autism was a mental disease. > Like with my son > Marty, he had so many seizures all the time that he had to take all > sorts of drugs for, so he became a drug addict on top of it all. Really, > the first drug they tried him on was Valium, and he got addicted to it. > He worked up to 45 mg. a day, and they wondered why he seemed > " retarded, " well duh maybe because he was drugged out of his mind! Louie had seizures when he was in elementary school, but they were the passive kind where he'd just kinda blank out, stare straight ahead, and be unresponsive for as long as a half minute sometimes. He must have outgrown them, though, because he hasn't had one since he was about 12. We consider ourselves fortunate in that. Louie's never had Valium, thank God. He takes, I think, Zoloft for his depression. He also takes Depakote for his impulsivity. > > I agree with you, our children are not " unwanted puppies. " This is > how they made me feel when they wanted me to put him in the institution, > and I believed it was kind of an evil thing. They didn't want to do it > to help Marty or me, but the state got more federal money the more > patients they put there, and they wanted that money. And yet Marty would > have just been drugged up so he couldn't cause them any trouble I am > pretty sure. That sounded evil to me, so I said No Way! Doesn't that > sound evil? It does indeed. We couldn't understand why we should put him in an institution at all! He was (and is) such a delightful kid, even with all he had to cope with. So he was difficult sometimes. So were my three NT brothers, and although I'm sure my folks thought of putting them away sometimes (joke there), they never would have. You just put up with it until they learn better. > Gosh this is FUN to vent about this! I haven't done it in a > long time. Wish I would have had somebody to talk to once in > awhile through those long lonely years. Back then parents like me were > pretty isolated though. I did meet a few mothers when we had meetings at > the special ed school and think it helps to know we are not alone. > Anyway it helps me a lot, sharing our burdens so to > speak.I always enjoyed them a lot. I know what you mean. In Tulsa, where we are from originally, there were no support groups for parents of autistics.....other than the group " pity parties " that masqueraded as support groups at the local mental health center. We went to one of those, looking for ideas, and all we found were a bunch of " poor me's " and no info at all. Ick. Plus, the internet had not yet been invented, really. So we pretty much did this on our own until about '93 when I found my first autism listserv. I remember thinking at the time that I wish it had been available when Louie was little. And that's why I still sub here, even though Louie's grown and his own man and no longer lives at home. I think some folks just starting down this path could use the input of folks like us who have " been there done that. " Annie, who loves ya annie@... -- We have enough youth .... How about a fountain of smart? -- Skoge Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2004 Report Share Posted July 19, 2004 Hi Kathy, Now your words made tears come into my eyes! No, it isn't a professional shot. The guy who lives with Marty and I, and takes care of Marty's bathing, and changing his Depends a couple of times a day, and setting up his feeding pump, etc., took it. His name is . I was planning to use a couple that for my book I am working on to get published online. We were at a park near us for a church picnic the day we took that one, and the background was sure pretty against the McKenzie River. I was looking at the pictures you sent, and I just loved them. I will save them in my save files. They are just beautiful. Yes, I hope that your boy, , does well in school too. I think if they get them real young like he is now then he will fit in very well with special supports. When they mainstreamed my son he was already a teenager, and had been in a special ed school all of his life, trying all sorts of programs. It was like one big experiment, and then boom he was put in junior high school, and he freaked! Well "normal" kids freak a lot of times, so I was not surprised. I wish they would have just picked something and stuck to it, "they" meaning the educators. But alas I have found over the years that there is always a new idea coming along, that people get all hyped up about. When my son was that age, "compliance training" was the big "in" thing to do. I was talking to his case worker from the county the other day about it, and she was shocked, said they didn't do that anymore. Well that is good! She came out to tell me about a new program, and evidentially we are going to get a lot more money to take care of Marty at home. He was part of a class action suit here in Oregon. It sure is amazing to me I must say, all those years of fighting for every little bitty thing, and then all of a sudden the want to help us! Well because they HAVE to. I still don't trust them though to tell you the truth, haha. But it will be nice if it is true, to get some real support from the state for a change. His dad worked hard all his life, and I took care of our four kids at home, and he had to go on disability before he died, so consequently Marty gets federal disability from all he paid in after he died, is more than SSI, and I get paid to take care of him too. That was sure a BIG surprise! Hay, the federal government are our friends! haha Anyway I would suggest to all parents with disabled kids, well any kind of kids really, what they need is consistency. Just pick something consistent and stick to it, the Lord will lead you. With me, my son needed my love, and a loving family to grow up in, and a stable home life. And he has that, and it is good! He loves being Uncle Marty to his little niece and nephew who come by almost every day, and soon there will be another new little nephew. He really loves the children, and they love him, have learned a lot about compassion growing up around him I think, as his two brothers and sister always did. Hope to talk to you all soon, Carolyn in Oregon RE: Carolyn & Marty Carolyn, I love that picture of you and your son. Honestly, my eyes teared up seeing your love for him pouring out of you! Is it a professional photograph? It certainly looks it and totally captures the love. I have two sons that I totally adore so I'm very partial to mother son pictures My little is 5 and Matt is 2.5. I think has Aspergers and we're on our way to a diagnosis. Thankfully I do believe he'll be mainstreamed in school with some modifications to accommodate his "specialness" If you want to see my boys they are at http://www.alexshear.com Kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2004 Report Share Posted July 19, 2004 Annie said: And that's why I still sub here, even though Louie's grown and his own man and no longer lives at home. I think some folks just starting down this path could use the input of folks like us who have "been there done that." Hey Annie and Carolyn, Well, I'd like to personally thank you for staying around even though your sons are grown. You are a true expert being the mom especially doing it for so long with minimal resources. There is so much available to us today and life is easier on us. When I think of what autism meant to me only a few months ago ... I had no clue. I'm still trying to swallow that my son may in fact be HFA. I just can't get enough to read and have ordered books to help me teach him social skills. My husband thinks I'm jumping the gun a bit since we don't have a "formal" diagnosis and will probably freak when he sees the books arrive with the word "autism" on them but we know our kids and its our job to help them in this life ... and I'm never letting anyone make me doubt mother's intuition again - I've thought this about since he was a baby. Bright as all hell ... he's my little professor but forget about it on the social side. He's very loving with the immediate family .. but it is so obvious with other people ... It sounds like Marty and Louie were truly blessed to have the mom's they do! Kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2004 Report Share Posted July 20, 2004 Thank you Kathy, HFA; high functioning autism. Oh. When Marty was in the school for the retarded, they had high functioning and low functioning for them also, trainable, and non trainable. I never did like the labeling much, and was so happy when school was over with, so for some years Marty has just been Marty, and we love him totally and unconditionally. Anyway I always thought he was high functioning, because he sure has taught me a lot, and I even have two degrees from college, but to tell you the truth I think he has taught me much more than all those classes ever did. Just something about his spirit, and his courage, and his never giving up or giving in. Don't know what to call it. God in him maybe? I figure if he can do it, then I can do it, and I have! Carolyn RE: Carolyn & Marty Carolyn, HFA .. High Functioning Autism. It is used interchangeably with Aspergers. Since the term Aspergers is fairly new, labeling a diagnosis HFA allows governement services under the disabilities act and in some cases an Aspergers diagnosis isn't. Anyone, feel free to jump in and correct me since I'm pretty new to all of this. Kathy Sigh. Oh by the way, I meant to ask you what HFA means. I am new to this and don't know any of these terms yet, and would like to learn. My kid was just always labeled, "non trainable retarded," NTR I guess. All they cared about then was training these children to work jobs, and Marty got out of that, so he must have some smarts. Quote Link to comment Share on other sites More sharing options...
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