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Ellie Snowshoe

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    Inland Northwest aka, the middle of bloody nowhere
  1. Wow, apparently I didn't make my point. I wasn't advocating for public school. My guy isn't in public school, he's at a private, 8:1 pre-k, no IEP, no social worker, no nothing, just a paraprofessional and great teachers and a good deal of money. The reality that set in was MY reality, not anyone else's. What I was trying to get across is that while a high functioning child might flourish academically at home, they've been shown to do better with a safe community of typical peers to interact and play with. Unstructured play with peers in an invaluable tool for development. High functioning kids do model peer behavior, but they often don't learn appropriate social signals. Of course they're never going to be typical, they're autistic. But using the problems that come up as an opportunity to teach solutions is part of the process (like the problems I mentioned he had this year). That's why we do social stories about turn taking, and being a space invader, and act it out, and the whole nine yards. This is not available to everyone via school. I explicitly said if the room is not appropriate, Homeschooling would be a better choice. Bullying is not tolerated at his school and the parents are ubersupportive. I know we've been lucky. But if he didn't have this school, we'd fulfill that need for play in another way, like a homeschool coop, which I did ask if it was an option. I'd never tell anyone where to place their kid, I have no idea if the teacher is any good, if the kids are accepting, if the parents are supportive. But I would point out that Madison, WI has a school system that integrates all children so successfully that their disabled student rate is over 18% because people are flocking from all over the country (great new york times article if you care to google it) to get their children enrolled and have their kids treated with dignity and respect. Charlotte, NC also integrates with really good results. So the concept of "school" itself is not necessarily the problem. What is the goal for schooling? My point was: school isn't all about academics, play is important to development, and play with peers critical to high functioning kids (I challenge anyone to find a good study saying otherwise). Where are you going to get it? Autism does not = Public School, but Autism does not = homeschooling either. Do what's best for your little one.
  2. Hi, I was a committed homeschooler until reality set in. I have a five year old boy with autism. He's also high functioning. My son's great behaviorist and his developmental pediatrician asked "What's the goal for him?" It's a good question. I teach him at home. We do HWT and we're starting singapore math, and AAS. But what I can't get done at home is what he needs most. He needs to learn how to manage status rivalries, negotiate group dynamics, understand social norms, and navigate the distinction between self and group. This cannot be taught by me or any other adult. The best place to learn, if he's high functioning, is by modeling typical peers. Now if you have a peer group he can play with every day and become part of their community, he can learn to negotiate a group dynamic and be home schooled. But we don't have that, so he goes to a small private prekindergarten with a para, who is being faded out next week. I was really skeptical when we were told to put him in a typical classroom. But the change has been remarkable, and his peers have made efforts to make him part of the class. That I wasn't expecting. When he walks in to the room in the morning, one girl takes his hand and reminds him to make his lunch choice. Another kid comes up to him when he's wearing his spiderman shirt, because my little one is obsessed, and says "I wore my shirt today, is it cool?" The outreach in a small class where everyone has to interact with each other is critical. Now if you're choice is homeschool or chaotic public school with a 25:1 ratio and no para, you might not have a good choice. Is there a coop you can join? I'd just implore you to keep asking yourself how he's going to learn social skills, high functioning kids can academically learn, that's part of what makes them high functioning. The tough stuff is putting your efforts into their social weaknesses, like learning how to rough house without killing the other kids (we're working on it), how to take disappointment when someone won't take turns with you when you've asked in the nice way that makes everyone at home give you a turn (ego crushing disaster for a week), learning to accept when kids don't want to play with you, but do want to play with someone else (the girl of his tiny five year old dreams, another ego crusher), where is he going to pick this stuff up? If he's ever going to be independent and hold down a job he will need this more than math or reading. A large predictor of success in independent living, more than IQ, is the ability to internalize criticisms and change his own behavior and the ability to understand social cues. I try to keep the long term goals in mind when I'm tempted to sweat the fact that he can't remember what time of day we eat lunch in his DTT. Who cares, he has a community that values him, and for our guy that's way more important.
  3. My little man is going to be six in the summer too, and he's been using HWOT for two months. He has autism, but he goes to a typical preschool for social interaction, (he mostly learns at home.) His whole fine motor profile has skyrocketed since we've been using the program, and the teacher's manual is essential if you're not familiar with it. Please try buying it used at Half.com or ebay, or the thread on this forum for used items. It's worth every penny we spent. If it's at all possible to get an aide from the school system, then it will work even better. You might be surprised what your rights are to help if he's sick. I hope everything works out for you, I can't sing the praises of my kids' developmental pediatrician Dr. Anna-Marie Wilems-Floet, she's dutch and awesome, and at Johns Hopkins KKI, we went through a few docs before we found her. Good Luck
  4. Hi There, Air Force, huh, if you ever get stationed in Spokane, let us know, I'll take you out for coffee. I just wrote this long thing and it got eaten by my computer, so I'll try again, if it get's reposted oh well. His official diagnosis is static encephalopathy, but the consensus is he has autism. That took me a long time to accept. The word just has so much pathology, it sounds like it refers to something less than a whole, wonderful, child. It's just not the case. My team at KKI was very good at not labeling him at all. All they care about is identifying and correcting his functional difficulties. Little guy has problems acquiring and correctly using language. Engaging with other people appropriately. And a laundry list of minor issues from food aversions to poor fine motor and low muscle tone. But he's hilarious and sweet and the teachers pet. I reject the notion that because he has empathy he doesn't have autism. Today in school a child was told to go to the reading nook for some alone time because he was having trouble playing nicely. My guy went over, put his hand on his back and said "I sorry you can't play . . ." The fact that he can't look at him when he said it, and his voice isn't modulated, is a tip off he has autism. Glancing eye contact is coming along, but that's it. But he's starting to imitate their play, and do more pretending at home. He's doing great. He get's emotional, but he has problems regulating his emotions correctly. Tonight, he watched the video for "Rainbabies" and it made him sad. Now if you asked him what it was about, he'd give you a blank stare, because he just can't tell you. He can't use language in context. We had to teach him to use the word "No" correctly when he was three, but he could sing the entire postman pat theme. It took us months of intense lessons (we did a play therapy with DTT and it worked GREAT for us) to get him to process two step directions "clap your hands then touch your nose" He'd start the second one and totally forget about the first. It was a lot of work, but he's getting there. And by "there" I mean learning the skills he'll need to negotiate his environment for the rest of his life. I'll never forget I was eating Ben and Jerry's cookie dough ice cream in front of his babysitter (who is a guy) and I did the stupid thing of looking at the calories and I said "holy moly, 270 calories, vanilla only has 200 . . ." and my sitter looked at me askance and said "Yeah, but you get cookie dough . . . that's totally worth it." Parenting a quirky kid is like eating cookie dough ice cream, it's a little tougher on you than you thought, but totally worth it. We wish you the best. His little pixie sister motor mouth has to get to bed. I just want to reiterate that taking him to a place with comprehensive services was the best thing we ever did. If you have family in a major metro area you might think about asking them for help. And while we educate him at home, he goes to school to learn how to be part of a community. If he is anything like my boy, they need that more than anything. Good Luck
  5. This sounds just like my five year old boy. He never pointed to much, but he'd drag me around and let me know what he wanted nonverbally or by signing. If your writing here, you must think this isn't the standard way toddlers communicate. I'd encourage you to trust your instincts that something is up and get him to a major medical center for a full work-up by a developmental pediatrician. I was very resentful of the people who couldn't see my toddler for the lovely little ball of quirks he was. He was happy and that's what mattered. But when he hit his second birthday with no two word phrases, I knew we were in trouble. I wish I'd been more aggressive with early intervention. There is a finite amount of time that brain and neuronal development is primed for language. Use every day of it you can, because when they're six and twelve and twenty, you're going to want to look back and think you did everything you could to help them negotiate the world they inhabit. We've been exceptionally pleased with Anna-Marie Wilems-Floet at Johns Hopkins Kennedy Krieger children's clinic. If you have the means, it's worth going to a major medical center off the bat. We floundered in our mid sized city for months with no good diagnosis or resources. Again, in retrospect we should have gone straight to KKI. Please feel free to private message me if you have questions you'd like to discuss further.
  6. I'm not sure where you live, but we had ours at Johns Hopkins, they took our out of state insurance, and the 5,000.00 they usually charge came down to 800.00 out of pocket. It was well worth it, they have a PhD who does nothing but work on testing with a grad assistant. It was the most complete and most descriptive of the kid I know as my son. Any major medical center with an Autism specialty clinic will have what you're looking for. Stamford, Hopkins, Rush in Chicago, something like that. It would be worth the travel for a few days to get a great assessment than try to build a plan around an incomplete eval. That's just my opinion, but we went from Idaho to Baltimore for ours and it was worth it.
  7. If you look at the hard data, the data that is not driven by parent observation, but parent observation and reviews of clinician data, therapeutic listening has some benefit, but it is no greater than the benefit of listening to regular music for the same proscribed period of time. There is something called an unpacking study, when a study has an effect, the researchers try to pick out what part of the treatment was effective. Unpacking studies of therapeutic listening haven't been able to piece out whether it is just the increase in structure in a positive routine that has the effect or the changes in brain chemistry that comes from listening through headphones that are hard to tune out, or what. But the consistent data is that you can do the same thing with any orchestral music. I listened to some of my kiddo's CDs just to see how unpleasant the one that was bugging the hell out of him was, I got distinctly nauseous after five minutes. I don't doubt the sounds have some effect on physiology, but they may not be the thing thats benefiting the kids.
  8. We went to Kennedy Krieger at Johns Hopkins, and had a wonderful PhD in psych testing and her RA test our five year old. Total cost was 2,000.00 and we'd do it again tomorrow the results were so comprehensive and she was so good at explaining things. We live in Washington state and we fly back to Baltimore once a year for his evals. Their business office is a complete disaster (check every bill you get from them twice and call to make sure they submitted it to insurance), but the clinicians are fabulous.
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