tag:blogger.com,1999:blog-56090256546588649462024-02-07T04:33:50.768-08:00Autistic WisdomA weblog devoted to one family's life with autism in Alberta, Canada. A place for us to vent and perhaps pass on wisdom as we learn it to others beginning the same journey.AutisticWisdomhttp://www.blogger.com/profile/01553708099437502270noreply@blogger.comBlogger130125tag:blogger.com,1999:blog-5609025654658864946.post-64048542408691581242014-10-06T12:26:00.001-07:002014-10-06T12:28:38.433-07:00Letting GoAs a parent, acceptance of your child's limitations is a difficult journey. Like so many of our kids, I feel like I make progress, and then regress again into a little ball rolling on the floor.<br />
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I see so many parents at different stages of their own journeys. Some seem to make it quickly to a good place (or are very good at pretending), whereas others never seem to get there. As my kids exit the early intervention stage of their lives and their trajectories become clear, I am getting to a better place.<br />
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How am I getting there? I'll share - but keep in mind this is what works for <i>me</i>. It doesn't mean squat for other parents.<br />
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I've realized this a long while - but it is a starting point so worth reiterating. <i>No amount of therapy, no diet, nothing I can do will remove the autism from my kids. </i>It is part of who they are, and though I'd certainly give them the cure pill, it's not gonna happen barring a miracle in our lifetimes.<br />
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<i>This is who they are</i>. So instead of fighting their interests, I try to use them until I can't stand it anymore. I can't fight them on this; they are going to win. All I can do is try to introduce new things, but recognize the obsessions will always be.<br />
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<i>This is who they are</i>. I can teach and teach, try a million ways to get them to learn a new skill. But some things they will never be able to learn... and sometimes they are just not ready. So we press on.<br />
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<i>This is who they are</i>. This includes self-stimulatory behaviour... I can either watch them or join in. If you can't beat them, join them.<br />
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<i>This is who they are. </i>A will never live independently, so we do our best to prepare her as much as we can, but now recognizing it's not a race and there is no time limit. The pressure is off somewhat - what we do has to work for the family as a unit. T is a wildcard but we are planning on him always needing some financial support, as his language delay is not closing and employment is tough for those on the spectrum.<br />
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<i>This is who they are</i>. I am starting to love them as they are. I suppose that's letting go. I am sure I will regress tomorrow, but it is enough for today.AutisticWisdomhttp://www.blogger.com/profile/01553708099437502270noreply@blogger.com3tag:blogger.com,1999:blog-5609025654658864946.post-60541123170475753422014-07-19T07:20:00.000-07:002014-07-19T07:20:03.596-07:00Christian Wright and Autism Speaks<div class="separator" style="clear: both; text-align: center;">
<iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.youtube.com/embed/oSpA-pU2dsk?feature=player_embedded' frameborder='0'></iframe></div>
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You can click above to watch a trailer of Autism Speaks' new film, <i>Sounding the Alarm</i>. The film is now available on Netflix for free if you are a subscriber. Like all things in the world of Autism Speaks, it is designed to educate and inform, and likely make neurodiversity autistic self-advocates get pissed off and write another scathing anti-Autism Speaks post on their blogs.<br />
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I have written before that the autism spectrum is now <a href="http://autisticwisdom.blogspot.ca/2013/12/splitting-spectrum.html">so wide it has become meaningless</a>, pitting the parents and friends of people who have very severe autism against the high functioning autistics of <a href="http://autisticadvocacy.org/">ASAN</a> who function quite fine in society, thank you very much. Although diagnostically, severe and very mild autism share features, the day-to-day reality is so different that we may as well be talking about two completely separate disorders (and therein lies the rub - for the neurodiverse crowd, there is no disorder, just a difference.)<br />
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Most parents of children with severe autism are sympathetic and supportive of Autism Speaks, because although they do good work for everyone on the spectrum, they tend to focus on the families and people with severe autism and present that reality. I do not particularly understand why this ticks the higher-functioning crowd off, because if your autism is not causing you disability (and I would argue if it does not, you don't have it according to the <a href="http://www.autismspeaks.org/what-autism/diagnosis/dsm-5-diagnostic-criteria">DSM-V</a>), why should you care other than the "autism" label being tainted with severe autism realities?<br />
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Many people criticize how Autism Speaks uses their funding and for good reason. They spend too much money on research and salaries and not enough on communities and individuals. This is changing, but not quickly enough. However, one cannot dismiss the awareness and education Autism Speaks has brought to the world, and this is good enough for people to support them, in my mind.<br />
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Christian Wright has severe autism, and as a result, his grandparents founded Autism Speaks. Although I do not celebrate how much autism impacts Christian's life or that of his parents or grandparents, I do think his life story so far can be very guilt-relieving for many parents. Christian was diagnosed early, and despite <i>the best care money can buy</i>, including <i>ABA, speech therapy, OT, and DAN protocols</i>, he remains severely autistic, non-verbal (he uses speech output devices) and has behaviour challenges. Although early intervention and treatment works for all children to some degree, there is huge variation on response (due to cognitive ability). What I like best about Christian's story is that you can do everything right as a parent and still have a kid with severe autism. On the other hand, a child could receive minimal treatment and make huge gains, relative to someone like Christian.<br />
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Does this mean autism treatment is meaningless? Not at all. But it does bring wide attention to the fact that autism is a lifelong disorder for most, and severe autism may not be ameliorated in a big way by treatment. Every gain made in autism treatment is worth fighting for, absolutely, but we must also be prepared to give a meaningful life for those who have severe autism, and recognize that every skill gained is a gift. This is what Christian's life shows to me at least, and it is a message we need to hear - not just the feel good autism stories about brilliant quirky young men and women. Those stories are indeed worth telling, but you only need to talk to families with both sides of the spectrum in their houses to understand that they are not the same realities. People need to understand this, and I am happy Autism Speaks is getting that message out.AutisticWisdomhttp://www.blogger.com/profile/01553708099437502270noreply@blogger.com2tag:blogger.com,1999:blog-5609025654658864946.post-81976418772325818462014-07-06T21:03:00.000-07:002014-07-06T21:03:30.475-07:00National Autism Strategy is a Distraction<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjZLYwp1fKDfddKHMTHG694ejxRnFb44RhhhqnfniNMtEZUGdCOTdmi1pQf1nOMBv8wyVAauHgc_ncIbBUNA8YwUN7_-9DKaiJQxo3VXGbbCXkLFffiTtdtVArhf8OPeWwsm0MlasprVEYr/s1600/canada_fed.gif" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjZLYwp1fKDfddKHMTHG694ejxRnFb44RhhhqnfniNMtEZUGdCOTdmi1pQf1nOMBv8wyVAauHgc_ncIbBUNA8YwUN7_-9DKaiJQxo3VXGbbCXkLFffiTtdtVArhf8OPeWwsm0MlasprVEYr/s1600/canada_fed.gif" /></a></div>
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My fellow blogger over at Autism in New Brunswick is a strong advocate of what he calls a "National Autism Strategy" for Canadians. <a href="http://autisminnb.blogspot.ca/2014/07/dear-mr-mulcair-and-mr-trudeau-if-you.html">In the latest post on the topic</a>, he mentions four key points for such a strategy:<br />
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<b><i>a.) the development, in cooperation with provincial-territorial governments, of evidence based standards for the diagnosis and treatment of autism spectrum disorder;</i></b><br />
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<b><i>b.) the development, in cooperation with provincial governments, of innovative funding methods for the care of those with autism spectrum disorder;</i></b><br />
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<b><i>c.) consulting with provincial-territorial governments and other stakeholders on the requirements of implementing a national surveillance program for autism spectrum disorder;</i></b><br />
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<b><i>d.) the provision of additional federal funding for health research into autism spectrum disorder.</i></b><br />
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This is not news; many people have advocated for this strategy in the past, and some will advocate for in the future. I personally feel pushing this politically is a waste of time and amounts to us chasing our own tails when there are real advocacy issues and pursuits we could be tackling.<br />
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First, a little lesson in Canadian politics. Canada is a federation, which means that there is a division of powers between the federal (national) government, and the sub-national governments, the provinces. Canada's constitution guarantees that both governments can legislate in their respective jurisdictions. When there is disagreement, the Supreme Court of Canada usually must rule to determine which government may legislate (this happens more often then you would think). There are also many areas of shared jurisdiction, which makes some legislation fuzzy in terms of validity as per the Constitution.<br />
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Autism Services in Canada fall under three main areas:<br />
1. Health<br />
2. Education<br />
3. Social Services<br />
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All three of these areas fall under almost exclusive provincial jurisdiction (the exceptions being federal monitoring and approval of drugs and treatments and the health, education and social services of on reserve native Canadians). In Canada, although the federal government approves drugs and other health treatments, the provinces are responsible for regulation of health professions and which treatments are covered under provincial health care. Thus, from an autism services perspective, this is largely an area of provincial jurisdiction (and I would say mostly exclusively).<br />
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Some people argue the federal government could use its <a href="http://faculty.marianopolis.edu/c.belanger/quebechistory/federal/spending.htm">spending powers</a> to implement a National Autism Strategy, but I would argue all this would do is setup the federal government as a transfer payment agency with zero accountability on how that money is spent. While I would enthusiastically support direct federal transfers to people with disabilities including autism, this is not a National Strategy, it's just more money. There are no guarantees of new outcomes.<br />
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I will also mention that I held these views before I moved to Alberta and my presence in this province does not alter my opinion. While some may say it is nice for me to have this opinion in the province that provides by far the best services in Canada, I'll remind you we moved to get here rather than wrestle with the Ontario government. If you are in Canada, there is no reason you could not do the same.<br />
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Now, let's look at the four items proposed above on what would make a true "National Autism Strategy":<br />
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<i>Regarding Evidence-Based Standards for Diagnosis and Treatment</i><br />
There is already lots of evidence and reports on <a href="http://www.autismsocietycanada.ca/index.php?option=com_content&view=article&id=51&Itemid=82">what is considered evidence-based practice</a>. I don't think we need to make an official Canadian document to espouse what is already well known and described in the scientific literature. Any standards created would add nothing to the existing literature and could be largely ignored by the provinces, since diagnosis and treatment are in the health, education and social services areas of government and thus not within the federal government's ability to legislate.<br />
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<i>Innovative Funding Methods</i><br />
I am not sure if this is code for "transfer more money from the federal government to the provinces" or let's talk about best practices for funding autism services using the charitable sector. While this is a good idea, I am not sure we need to pay a bunch of people a lot of money to do this when there are great examples of <a href="http://www.theabilityhub.org/">many organizations</a> doing good things across Canada. Why do we need a National Strategy to tell us this information when it is already available? I do think there is some room here for funding methods in more remote regions of the country but this problem is not unique to autism.<br />
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<i>National Surveillance Program</i><br />
I agree it is odd that Public Health Canada does not track statistics on autism, and this actually in their area of jurisdiction. So okay, let's do that. But this alone is not a National Strategy on Autism, it's just a policy correction.<br />
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<i>Federal Funding for Autism Research</i><br />
Translation: Please give more money for autism research oh rich and powerful federal government. Okay, fine. But again, not a strategy people, just a policy variation. Who is not asking the federal government for research money?<br />
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Lastly, let's look at one area for which we do have a national strategy - <a href="http://strategy.mentalhealthcommission.ca/">mental health</a>. The strategy itself gives many "priorities", but all this really amounts to is a laundry list of asks to Canada's provincial governments. There is nothing here that will practically change the lives of people with mental health issues. It's a useful document, but one that will be shelved like all others with some of the recommendations implemented by some provinces. For a national strategy, it is not effecting any national standards in mental health. Why is this? Because it can't. Mental health, like autism, is largely in provincial jurisdiction. Many provinces have local boards or authorities running programs for both autism and mental health so services are not even consistent across provinces let alone nationally.<br />
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Even assuming you could create a strategy and have it implemented by the federal government there is no way all Canadian provinces would accept it and implement it. It's a fantasy. Could we change this? Maybe. We could attempt to change the constitution but we all know how <a href="http://en.wikipedia.org/wiki/Charlottetown_Accord">that went</a> last time. Most constitutional changes in Canada attempt to weaken, not strengthen, the position of the federal government anyway.<br />
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Real advocacy in Canada could be a national effort, but it must be directed at the provincial level. The provinces can legislate in these areas and the provinces have responsibility for them. A National Strategy for Autism is just a distraction for the <i>real</i> advocacy we need in Canada.<br />
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<br />AutisticWisdomhttp://www.blogger.com/profile/01553708099437502270noreply@blogger.com2tag:blogger.com,1999:blog-5609025654658864946.post-23123706841385233912014-07-01T11:52:00.000-07:002014-07-01T11:52:54.350-07:00New perspectives on leisure<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgEBRXCbIsbgY6H_nq3uKXJRIC4K_GtgMzdLkySu9SZ28qh9RzonGf1GlqsKcEPKNArnAYeoT449Ucve00xGIdgcKARx4-CFcwfoQekkMnJAfq8w3G0lSpD_qy7Rk_CHkEbGg_FYj-9yJ37/s1600/leisure-activities-1.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgEBRXCbIsbgY6H_nq3uKXJRIC4K_GtgMzdLkySu9SZ28qh9RzonGf1GlqsKcEPKNArnAYeoT449Ucve00xGIdgcKARx4-CFcwfoQekkMnJAfq8w3G0lSpD_qy7Rk_CHkEbGg_FYj-9yJ37/s1600/leisure-activities-1.jpg" height="170" width="320" /></a></div>
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So what do you like to do for fun? When my kids were younger and I was still trying to "recover" them, what they needed to do for fun was what other <i>typical</i> kids their age would be doing for fun. After all, if it is typical, then it allows for possible social opportunities. It also makes them appear more normal, and recovery is close to normal, no?<br />
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When I was a kid, I was very much into video games. Today, you might read that sentence and barely give it notice - what boy isn't into video games? But this was in the 1980s, and back then, that wasn't so common for boys, and especially not so common for fathers of boys. My Dad, God bless him, tried really hard to show some interest, but he just wasn't, and it was obvious. He liked sports and the outdoors - fishing, camping, and the like. While I enjoyed the outdoors with him as a boy I never developed the skills needed for his more challenging trips as a young man, and while I certainly enjoy watching an odd hockey game, sports buff I ain't - not even close. He also is a very intelligent man, so to some degree he enjoyed debate and discussion on ideas, and there I could provide some challenge for him.<br />
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My point here is that despite my interests not being <i>typical</i> of boys at that time, they were my own interests. Strange interests tend to result in some social isolation, because let's be honest - especially for men, relationships form around common interests. The fewer the number of people who share your interests, the smaller the pool of people is with whom you can form friendships.<br />
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I wanted my kids to have typical interests so they could have friendships and be more like everyone else. But as time has passed, I see I am fighting a losing battle (much like my Dad probably did). What people do for fun has to be intrinsically fun for <i>them</i>. As parents, we can introduce new activities and possibilities. Some of those will be shot down (in my case, almost all of them), but it does not mean we should stop trying, nor does it mean we should take it personally when it is shot down.<br />
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Case in point: puzzles. Both kids have been introduced to puzzles; A had programming around this and T has been shown numerous times. Both kids don't like puzzles much. They don't mind the iPad versions, and occasionally I can even get A to sit and do one with me when she wants, but mostly, she doesn't like them. Here's the rub: how many adults do puzzles? Not me, no thanks Jack. Puzzles are a task to me. Yet for some people they are quite relaxing. I think most people do puzzles as children and move on.<br />
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I have come to the point of realizing that while I need to constantly introduce and teach leisure skills, I have to stop fighting their natural interests and instead work with them. Yes, both kids play with some toys appropriately (T more than A), but A also thinks it's super exciting to watch things fall. New this week: place broom on deck. Push broom over, flap at result, and repeat. The old me would have said, "<i>this is perseveration, let us redirect this activity." </i>New me says, <i>"Clearly she is enjoying herself, this is pretty funny to watch."</i> T might arrange his letters a certain way and touch them, or watch a video at various volumes and laugh his head off. Yes, it's weird, but to him, it's fun.<br />
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My rules on leisure activities have drastically changed:<br />
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<ul>
<li>Activities cannot involve danger or injury to the kids, others, or property.</li>
<li>Activities cannot become so rigid that they interfere with daily functioning (case in point: T's letters were banished to his room because he got upset if we stepped on them - they are big foam letters. Sorry kid.)</li>
<li>Activities cannot be so solitary that we cannot join in - note this does not mean we always have to, it just means I have to be able to add some social component to it where we do it together.</li>
</ul>
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So yeah - I suppose the Dad conversation is a bit different ... </div>
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Question: "<i>What'd you do with the kids?"</i> </div>
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Answers: <br />
<i>"A and I had a blast rolling brooms and pots off the deck. It's hilarious."</i><br />
<i>"T and I broke our eardrums listening to TuTiTu videos. It's fun being somewhat deaf. Only for a bit though."</i><br />
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And yeah, most Dads just look at me because what can you really say to that? But the ones who know us best just say, <i>"Sounds cool. Glad you guys had fun."</i><br />
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They did. They had a blast doing things their own way. And isn't that what leisure activities are for? Yeah, I get to suffer through it, but what parent doesn't? If you want to have a relationship with someone you have to join them in their common interests, and with autism, the reciprocity of interests isn't very high. So it's more work for us, but in the end, we get better quality relationships. It's worth it. Most days.<br />
<br />AutisticWisdomhttp://www.blogger.com/profile/01553708099437502270noreply@blogger.com2tag:blogger.com,1999:blog-5609025654658864946.post-53225866136054464592014-01-03T19:48:00.003-08:002014-01-03T19:48:53.146-08:00The Power of Observation<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjlEW4x-5mox2fYYu1eP5Pay85KmDTWwtlpDGRkaj74bj-EmrK-LJxULyCRsi7pS16UJrQEoSpvqJZctVI0eBBZjHgNQvL_H8aa3Q2AUZdoRs664rPDp1tE4JX5-WY5EPfeY4UtfqTGbRYb/s1600/hoberman.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjlEW4x-5mox2fYYu1eP5Pay85KmDTWwtlpDGRkaj74bj-EmrK-LJxULyCRsi7pS16UJrQEoSpvqJZctVI0eBBZjHgNQvL_H8aa3Q2AUZdoRs664rPDp1tE4JX5-WY5EPfeY4UtfqTGbRYb/s1600/hoberman.jpg" /></a></div>
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<span style="font-family: Verdana, sans-serif;">This is a <a href="http://en.wikipedia.org/wiki/Hoberman_sphere">Hoberman Sphere</a>.</span> <span style="font-family: Verdana, sans-serif;">A got this for Christmas. She's been eying it for some time now at the store. It's been out, she's played with it, she likes it. We were pretty pumped about this gift at Christmas and so was she.</span><br />
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<span style="font-family: Verdana, sans-serif;">Recently, while T and her were playing with it (and me as well), something interesting happened. Bear with me - this is quite subtle. T watched me spin the sphere and then copied it. After several more repetitions of this across a few days, A <i>also began spinning the sphere</i>. This is the first time ever that we have ever since A demonstrate <a href="http://en.wikipedia.org/wiki/Observational_learning">observational learning</a>. T can do this but it is very much impaired compared to other children.</span><br />
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<span style="font-family: Verdana, sans-serif;">Observational learning is the foundation of being able to learn without direct instruction or training. It is why many kids on the spectrum cannot learn very fast - everything has to be specifically trained and generalized. This is contrasted to <a href="http://en.wikipedia.org/wiki/Operant_conditioning">operant</a> or <a href="http://en.wikipedia.org/wiki/Classical_conditioning">classical </a>conditioning or learning. Observational learning is quicker and more natural. </span><br />
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<span style="font-family: Verdana, sans-serif;">If you think about how a typical classroom works - a teacher demonstrates something, or children work in groups and watch each other to learn. They don't need to necessarily do something themselves to make an inference.</span><br />
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<span style="font-family: Verdana, sans-serif;">Observational learning can be as simple as watching another child go down a slide and noticing how to do it and when they might go. A simply has never before demonstrated this ability, ever. Everything has been taught explicitly, nothing has been learned spontaneously.</span><br />
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<span style="font-family: Verdana, sans-serif;">Such a simple thing, but a huge milestone for her. Perhaps it will never be repeated... but she has shown she is capable. She has shown the ability is in there when motivated.</span><br />
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<span style="font-family: Verdana, sans-serif;">And that's pretty darn awesome. </span>AutisticWisdomhttp://www.blogger.com/profile/01553708099437502270noreply@blogger.com6tag:blogger.com,1999:blog-5609025654658864946.post-38849958304840851792013-12-26T23:16:00.001-08:002013-12-26T23:16:56.578-08:00Splitting the Spectrum<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjUdDC8Iu0xO3R6rJNp2FLXkpjTDBr7lG8hLGoHA43N2-Ipu7yQXAF5ZYvL70Wpwi7lCzKhwJM50BOs9EMjx1mx_Io97gYHy_zdjUviuV97bkRnIzpEfIZKw1eHv20PnVcSAyDOuea-LrmO/s1600/2-worlds-split.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="196" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjUdDC8Iu0xO3R6rJNp2FLXkpjTDBr7lG8hLGoHA43N2-Ipu7yQXAF5ZYvL70Wpwi7lCzKhwJM50BOs9EMjx1mx_Io97gYHy_zdjUviuV97bkRnIzpEfIZKw1eHv20PnVcSAyDOuea-LrmO/s320/2-worlds-split.jpg" width="320" /></a></div>
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<span style="font-family: Verdana, sans-serif;">Recent changes in how autism is diagnosed have supposedly removed ambiguity about what autism is and what it isn't. However, this to the benefit of clinicians (people diagnosing and treating autism), and not so much for the benefit of people impacted by autism and for the general public.</span><br />
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<span style="font-family: Verdana, sans-serif;">The previously separate autism spectrum disorders - autism, PDD-NOS, and Asperger Syndrome have been folded into "<a href="http://www.autismspeaks.org/what-autism/diagnosis/dsm-5-diagnostic-criteria">Autism Spectrum Disorder</a>", or ASD. Most people still use the term "autism" and "ASD" interchangeably, even though autism used to refer to classic autism, <a href="http://simonsfoundation.s3.amazonaws.com/share/071207-leo-kanner-autistic-affective-contact.pdf">as defined by Leo Kanner</a>.</span><br />
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<span style="font-family: Verdana, sans-serif;">So perhaps this made it easier for clinicians to diagnose autism... but it has made it harder for people living with it each day to get the supports they need. The spectrum has become so wide it is meaningless, from the <a href="http://www.youtube.com/watch?v=SwzfgNWmR6E">very capable</a> to the <a href="http://www.youtube.com/watch?feature=player_embedded&v=w_23z9yJAq0">very disabled.</a></span><br />
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<span style="font-family: Verdana, sans-serif;">People like <a href="http://www.autismspeaks.org/news/news-item/autism-speaks-washington-call-action">Suzanne Wright of Autism Speaks</a> who work to advocate for those with autism (and admittedly at the severe more disabled end of the spectrum) are slammed by many <a href="http://evilautie.org/2013/11/11/this-is-autism-speaks/">people who have autism</a> (as it is defined now). </span><br />
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<span style="font-family: Verdana, sans-serif;">The gulf has become too wide. Parents with high functioning children towards the old Asperger Syndrome definition may be fretting about Johnny's difficulty making friends, whereas parents of low functioning children may be fretting about when their kid is going to get too big for them to handle when they become aggressive. These two ends of the spectrum are so different - they present with such different problems that they are incompatible. </span><br />
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<span style="font-family: Verdana, sans-serif;">Some people may argue that the low functioning end of the spectrum includes those with <a href="http://info.epmhmr.org/poc/view_doc.php?type=doc&id=10348&cn=208">intellectual disability</a>, and that is true. But the high functioning end includes those with anxiety disorders and other problems too.</span><br />
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<span style="font-family: Verdana, sans-serif;">We can't keep classifying the low and high ends of the spectrum using cognitive ability as our measuring stick. Intelligence in autism is very difficult to measure due to scatter in ability. Instead of trying to roll up autism into one package with co-morbid conditions, why not recognize the reality that those who have huge difficulties with day to day living just don't have the same "autism" as those who do not?</span><br />
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<span style="font-family: Verdana, sans-serif;">I would like to see two autism definitions, perhaps "autism" and "Asperger Syndrome". The key difference between these two diagnoses should be level of functioning across all areas outside of just social skills and social communication, IQ being irrelevant (I'd argue a person who has a high IQ but still cannot wipe their butt at age 18 is still as disabled as someone with a low IQ).</span><br />
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<span style="font-family: Verdana, sans-serif;">The high functioning "autism is a difference" crowd can go on with their mantra but under a different name. Autism Speaks can "speak" for the low functioning crowd who have very severe difficulties living day to day. There's just not enough in common to keep the spectrum together. It's time to split it up and recognize the reality of what autism is.</span><br />
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<br />AutisticWisdomhttp://www.blogger.com/profile/01553708099437502270noreply@blogger.com3tag:blogger.com,1999:blog-5609025654658864946.post-56377903234599328322013-12-12T20:45:00.000-08:002013-12-12T20:45:28.653-08:00It's Been a Long, Long While...<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgMCb-jNH1jXNT0BndB1gM8MXCbmr1qJjGar4JiooLmr4rD_F4p5p7GmqHrVOyh2H8vv89NJJ0YsqIKqsBWtqZxnclaLebX71X2AgYpRZB8rBUc56MvSzhWr_FhlLTYQ9CpXdMi9KA78ca2/s1600/alberta_logo.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="90" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgMCb-jNH1jXNT0BndB1gM8MXCbmr1qJjGar4JiooLmr4rD_F4p5p7GmqHrVOyh2H8vv89NJJ0YsqIKqsBWtqZxnclaLebX71X2AgYpRZB8rBUc56MvSzhWr_FhlLTYQ9CpXdMi9KA78ca2/s320/alberta_logo.png" width="320" /></a></div>
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<span style="font-family: Verdana, sans-serif;">It's been a long, long while since I've posted on here. Why? Well, if you haven't been around, you might see something different. Or check out the logo above.</span><br />
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<span style="font-family: Verdana, sans-serif;">What happened?</span><br />
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<span style="font-family: Verdana, sans-serif;">We moved. Far. Thousands of kilometres, in fact. </span><br />
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<span style="font-family: Verdana, sans-serif;">You might think me crazy to uproot the entire family and move to the other side of the country... but hear me out, then you might change your mind.</span><br />
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<span style="font-family: Verdana, sans-serif;">I posted <a href="http://autisticwisdom.blogspot.ca/2013/01/ending-early-intervention.html">quite some time ago</a> about the end of early intervention for A.</span><br />
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<span style="font-family: Verdana, sans-serif;">In that post, I asked... what to do? Well, we figured it out. We left. We followed the services... and there are many to be had in Alberta.</span><br />
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<span style="font-family: Verdana, sans-serif;">Let's start with A. Once IBI ends in Ontario, there is very little in the way of supports. Yes, you can get the <a href="http://www.children.gov.on.ca/htdocs/English/topics/specialneeds/autism/guidelines/guidelines-2011.aspx">ABA program</a> in Ontario now, but they are barred from entering the schools and there are waiting lists. The quality of service is quite variable and the treatment protocol is indirect; it is a consultative service mostly geared to help parents cope. Supports in the schools are even worse. Every school board has its own policies in terms of what placements are available (and even when offered they may be full). Boards have "specialists" but you're lucky if your kid's teacher gets a consult once a year let alone direct service. In short, it sucks. Life after IBI is not so good if after it's done, your kid still needs a lot of help.</span><br />
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<span style="font-family: Verdana, sans-serif;">Let's begin with schooling. Ontario schools do a very poor job of educating kids with ASD. Yes, there are <i>some </i>schools and <i>some </i>teachers and <i>some </i>principals who really do try, but they have no training (a weekend workshop on autism does not an expert make), and staffing levels can change at a moment's notice. The biggest issue in Ontario is that <i>special education grants go to the school board and there is no accountability in how that money is spent.</i></span><br />
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<span style="font-family: Verdana, sans-serif;">There are private school options in Ontario <a href="http://www.newhavencenter.com/">if you live in Toronto</a> or Ottawa. Tuition cost? $56,000 per year. Not affordable by a long shot. What about in Calgary? Yes, <a href="http://www.janusacademy.org/">there is</a>, and good news, it's $12,000 per year.<i> How is this possible?</i> One very important reason. Alberta funds private schools and not only that, special education grants are tied to the student and go directly to the school in which they attend. How about that? What a logical idea. The money that the government allocates for my kid is ... spent on my kid. Neat.</span><br />
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<span style="font-family: Verdana, sans-serif;">Moving onto T on the school front. In Ontario T would have half-time junior kindergarten (with us not living in a designated area for full day yet) in a classroom with 25 kids with zero support. Here, T gets to attend a specialized pre-school with 10 kids, a teacher's aide, and a speech pathologist or occupational therapist in the room <i>all the time</i>. No, not a once a year consult, but like direct therapy because these therapists are on staff at the school. Not the board. The school. And we pay nothing for this, because guess what? The school gets a grant for T and yet again, it's used to educate him. Huh.</span><br />
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<span style="font-family: Verdana, sans-serif;">What about other supports? There's lots:</span><br />
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<ul>
<li><span style="font-family: Verdana, sans-serif;">Respite supports so Mom and I can go out on dates or have time to ourselves.</span></li>
<li><span style="font-family: Verdana, sans-serif;">Overnight help for A when her sleeping is sucking.</span></li>
<li><span style="font-family: Verdana, sans-serif;">Community support to allow A and T to enjoy things typical kids do like swimming lessons or classes.</span></li>
<li><span style="font-family: Verdana, sans-serif;">Direct speech language, occupational and physiotherapy to help the kids development.</span></li>
<li><span style="font-family: Verdana, sans-serif;">Board Certified Behaviour Analyst to work with before mentioned team to work on behavioural issues and general learning.</span></li>
<li><span style="font-family: Verdana, sans-serif;">Support to hire one-on-one aides to work with the kids on skills. </span></li>
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<span style="font-family: Verdana, sans-serif;">There's no waiting list. There's no <a href="http://www.rapon.ca/">bloated government bureaucracy</a> that controls the funds or provides services at stupidly high rates when the private sector could do it more efficiently. It's all about parent choice.</span><br />
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<span style="font-family: Verdana, sans-serif;">Still wondering why we moved? We're not. Well, maybe when it's -30 degrees outside. But otherwise, not so much! </span><br />
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AutisticWisdomhttp://www.blogger.com/profile/01553708099437502270noreply@blogger.com6tag:blogger.com,1999:blog-5609025654658864946.post-60391082783944026932013-06-13T08:53:00.000-07:002013-06-13T08:56:38.602-07:00An Unexpected Fatherhood<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjRWqaWHf5WlqTg-iEt_xiPyy6QWBwWd8INP13pHGMe2t61NvjM75matcqCikwA5sWBnb67UjURlSDavbHzSJSnbJzmAVQRtbT1ZjP-ygpHNmCF6eFzT1IIo7YYW4arfoZed8p6U-jx0Dez/s1600/noregrets.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjRWqaWHf5WlqTg-iEt_xiPyy6QWBwWd8INP13pHGMe2t61NvjM75matcqCikwA5sWBnb67UjURlSDavbHzSJSnbJzmAVQRtbT1ZjP-ygpHNmCF6eFzT1IIo7YYW4arfoZed8p6U-jx0Dez/s320/noregrets.jpg" width="320" /></a></div>
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<span style="font-family: Verdana, sans-serif;"><i>“Hope is the power of being cheerful in circumstances that we know to be desperate.”</i>
- G.K. Chesterton</span><br />
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<span style="font-family: Verdana, sans-serif;">Something big is coming. I can't talk about "it" just yet, because we need to get past a certain date before it can be truly public knowledge.</span><br />
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<span style="font-family: Verdana, sans-serif;">This something "big" - I have been wondering if it is the right decision for us lately. I suppose I'm having cold feet. I am pretty sure it is right, but like so many big decisions, doubts linger. Then again, if I waited until I was 100% sure on all decision in my life, I would have never married or had kids in the first place.</span><br />
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<span style="font-family: Verdana, sans-serif;">I had a chance recently to share my story with a group of men at our local church. Two points seemed to resonate the most with the guys - first, the fact that my ideal of fatherhood had to be (and still must be) radically redefined to meet the reality of my kids and their needs. Second, the reality that A will be dependent on us forever, and T as well to some extent (it is too early to say and it could go either way with him). T could do very well, adjust, and be relatively independent, or he could succumb to anxiety and aggression, conditions of which he is at great risk of developing.</span><br />
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<span style="font-family: Verdana, sans-serif;">To the first point, I need to grieve the fatherhood I wanted and move on. It's an on-going process, probably life-long, but it's time to stop thinking about the fatherhood I wanted, and deal with the fatherhood I've been assigned, given, chosen for me. I need to find joy in that fatherhood and stop wishing for a different one.</span><br />
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<span style="font-family: Verdana, sans-serif;">To the second point, I feel like I need to explain (maybe just for myself) why we agonize over decisions.</span><br />
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<span style="font-family: Verdana, sans-serif;">If you don't have children, this analogy will probably be lost on you. If you do, then you probably experience how quickly parenthood passes you by, one day, your child speaks a first world, the next day, they go to school, and the next, they are with their friends and you are the uncool parent. In our parenting world, childhood is the same, but in slow motion. Toys get used till they break either because they remain interesting for longer than most kids use them, or because their use is so ingrained change is too difficult for my kids to move on. T re-discovers classics like Baby Einstein at age 4 (please save me from the Cat). Milestones come, but oh, so painfully slowly. I feel like my life is a 2 minute video on YouTube someone keeps playing over and over (maybe it's because my kids do this on a daily basis?)</span><br />
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<span style="font-family: Verdana, sans-serif;"><i>Years from now, when your kids have moved on, when they are leaving for university or college, when they move out, get girlfriends and boyfriends, begin their careers, get married... years from now my kids will be at home with me, still moving slowly towards their own milestones. A parenthood that so quickly passed for you, that morphed into something new so many times along the way, has stayed the same for me. When you plan your daughter's wedding with her, I may be trying to come up with meaningful activities for her to do as school has ended with staff who have a high school education and a criminal background check. When you retire and begin travelling, I will be trying to find suitable supported living conditions for my kids, praying they never suffer abuse or ill treatment.</i></span><br />
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<span style="font-family: Verdana, sans-serif;"><i>When you die surrounded by your children and grandchildren in your old adage (hopefully with them involved in your end of life care), I will be praying my children will be well cared for and have a meaningful life when I am dead. </i> </span><br />
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<span style="font-family: Verdana, sans-serif;">My job as parent will never be over. </span><br />
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<span style="font-family: Verdana, sans-serif;">I wanted my own dream of fatherhood.</span><br />
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<span style="font-family: Verdana, sans-serif;">I got an unexpected one.</span><br />
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<span style="font-family: Verdana, sans-serif;"> </span>AutisticWisdomhttp://www.blogger.com/profile/01553708099437502270noreply@blogger.com1tag:blogger.com,1999:blog-5609025654658864946.post-46700472650917227802013-05-08T05:42:00.000-07:002013-05-08T05:42:11.056-07:00More Than Talking<span style="font-family: Verdana, sans-serif;">As my kids age and their disability becomes more noticeable, I am always interested to see how they are perceived. One thing I have noticed that other parents notice is that children's developmental levels are often determined by how much they say. The more sophisticated the language, the more they expect. The less sophisticated, the less they expect. And for typically developing children this is not such a bad measure, assuming ability to express one's self is as equally developed as everything else.</span><br />
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<span style="font-family: Verdana, sans-serif;">But not so for autism.</span><br />
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<span style="font-family: Verdana, sans-serif;">For this reason, my son T's ability is usually over-estimated. People forget he has autism, even though his language is over a year delayed. He is almost four and still in diapers. He is very clever at putting together scripts and other things he has heard in context, enough to fool the listener into thinking he is saying very witty things... except of course, since I have heard them all before, I know better. Now, I am not dissing my son, I love him and he is very bright. I love how he is coping and love how he uses echolalia so functionally. But it does fool people into thinking he has fewer challenges then he really does....</span><br />
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<span style="font-family: Verdana, sans-serif;">And then we have the opposite problem with A. She can express her wants and needs with speech output, but verbally is very limited. For this reason, people are unsure or assume she cannot understand much or is quite severely disabled. Now, I will not pretend she is less disabled than T, because overall she is, but many people try to do things for her she is quite capable of doing herself. All of her language is very delayed, but she understands most of what is said, can follow two step directions and has some strong daily living skills, relative to others on the spectrum.</span><br />
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<span style="font-family: Verdana, sans-serif;">So - please, please, <i>please</i>, do not judge based on ability to talk. Talking is <i>one</i> area of ability, and a child may be perfectly verbal but struggle with self-help skills, emotional regulation, cognitive functioning, or behaviour issues. Or a child may be completely non-verbal but has age appropriate receptive language and self-help or daily living skills and academics. You cannot know one way or the other based on talking alone. My best advice? Presume competence and back off as needed. </span>AutisticWisdomhttp://www.blogger.com/profile/01553708099437502270noreply@blogger.com2tag:blogger.com,1999:blog-5609025654658864946.post-9312359627563331892013-03-03T19:05:00.004-08:002013-03-03T19:06:27.130-08:00Not your Typical Parenthood<div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: Verdana, sans-serif;">Okay, I'm going to give you fair warning. I am going to whine in this post. I'm gonna share how I feel, and it not be right, and perhaps I'm a crappy dad for saying it, but it's on my mind, so I'm going to write about it.</span><br />
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<span style="font-family: Verdana, sans-serif;">I find it really difficult to relate to parents of typical children.</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">I feel like we're in this strange parallel universe where all parents, even those with special needs children, have at least one child who is typical. This typical child produces, in some manner, some resemblance of a typical parent-child relationship. I do not know a single family with multiple children, other than those I have passed in cyberspace, that have all special needs children. Usually it is one child affected, but other children are "normal".</span><br />
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<span style="font-family: Verdana, sans-serif;">I was assisting in Sunday School today when I realized I had no idea if the behaviour I was witnessing was normal or not. I don't know what normal is, I only know what my kids do... and that is not what most kids do.</span><br />
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<span style="font-family: Verdana, sans-serif;">I have written before about <a href="http://autisticwisdom.blogspot.ca/2011/11/parental-social-isolation-in-autism.html">parent isolation</a>. Most people have what you would consider peer groups, and most of those peer groups have a very predictable trajectory:</span><br />
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<ul>
<li><span style="font-family: Verdana, sans-serif;">Single people</span></li>
<li><span style="font-family: Verdana, sans-serif;">Childless couples, usually younger</span></li>
<li><span style="font-family: Verdana, sans-serif;">Couples with young children</span></li>
<li><span style="font-family: Verdana, sans-serif;">Couples with school age children</span></li>
<li><span style="font-family: Verdana, sans-serif;">Couples with teenagers</span></li>
<li><span style="font-family: Verdana, sans-serif;">Couples with an empty nest / university aged children</span></li>
<li><span style="font-family: Verdana, sans-serif;">Couples with a full empty nest and retired</span></li>
</ul>
<span style="font-family: Verdana, sans-serif;">I don't feel I have a peer group. It is difficult to relate to a childless couple... we don't have the flexibility or free time they might have, nor do we look forward wistfully to starting our family.</span><br />
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<span style="font-family: Verdana, sans-serif;">I suppose we are closest to families with young children since although our children are pre-school age, they are both delayed developmentally (A much more so than T). Even still, it is weird watching toddlers go to the bathroom when your 3.5 year old wants his diapers.</span><br />
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<span style="font-family: Verdana, sans-serif;">So I say again - I don't know what typical parenting is. I only know what parenting my children is. And it is very different than typical.</span><br />
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<span style="font-family: Verdana, sans-serif;">I'll admit, I very much struggle with this. I went away on a trip last week for work, and when I came back the next morning, I prompted both kids to say hello to me (both were busy with our iPhones watching videos), just like any other morning. They did not appear to notice I went anywhere. There was no running to me yelling "Daddy, daddy", or "what did you get me", or "how was your trip". There ... was... nothing. Nothing. <b>Like I never left.</b></span><br />
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<span style="font-family: Verdana, sans-serif;">Let me go out on a limb here and say most of us feel loved the most when we are known and accepted by others, and we know and accept other people. When I say "know", I mean at some deeper emotional level. "Life", such as it is, has been shared and some intimacy has been gained between people. I don't feel that way about my kids. It hasn't happened yet. It may never happen. I feel like emotionally I still have infants.</span><br />
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<span style="font-family: Verdana, sans-serif;">That makes me sad. It's not what I expected out of fatherhood.</span><br />
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<span style="font-family: Verdana, sans-serif;">Yes, I know it's not about me. But I can still mourn the fact that for me, fatherhood will be very different. If typical moments or rites of passage of fatherhood come for me, it will be later, or perhaps never. </span><br />
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<span style="font-family: Verdana, sans-serif;">Forgive me if I'm sad about that. It is what it is. But today what it is really sucks. </span><br />
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AutisticWisdomhttp://www.blogger.com/profile/01553708099437502270noreply@blogger.com2tag:blogger.com,1999:blog-5609025654658864946.post-34389449369902010832013-02-05T06:13:00.001-08:002013-02-05T06:16:41.916-08:00How to select a Speech Language Pathologist<span style="font-family: Verdana, sans-serif;">For most children with autism, a Speech and Language Pathologist (SLP) is a must. In many cases, an SLP is who a child will see first when they present with language delays or problems with social communication. But like all professions, there are good SLPs and bad ones, and SLPs better suited to work with different populations than others.</span><br />
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<span style="font-family: Verdana, sans-serif;">Since A was diagnosed, we have seen (between both children) at least eight SLPs. Of those eight, two were truly helpful, and two tried really hard. The other three, not so much. One we considered was so hostile to behaviour therapy she told us flat out she would not work with any family that used it.</span><br />
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<span style="font-family: Verdana, sans-serif;">So, beyond the obvious statement, make sure your SLP is validly registered in your jurisdiction (in Ontario, the <a href="http://www.caslpo.com/">College of Audiologists and Speech Language Pathologists</a>, or in the rest of Canada, the <a href="http://www.caslpa.ca/">Canadian Association of Audiologists and Speech and Language Pathologists</a>).</span><br />
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<span style="font-family: Verdana, sans-serif;">Here are the other important considerations:</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<b><span style="font-family: Verdana, sans-serif;">1. Are they willing to work within an interdisciplinary team?</span></b><br />
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<span style="font-family: Verdana, sans-serif;">Most families treat autism with a variety of professionals, especially behaviour analysts and occupational therapists, but also potentially naturopathic doctors, music therapists, or others. One SLP we worked with was convinced Floor Time was the bomb, and she would consider nothing else. If any SLP is preaching one way as the only way, run away. A good SLP will work with anyone you want, even if they are skeptical of the treatment approach.</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;"><b>2. Do they understand your child's needs and cognitive ability?</b></span><br />
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<span style="font-family: Verdana, sans-serif;">First, a lot of children with classic autism have some degree of cognitive impairment. This is not true of children with PDD-NOS or Asperger Syndrome. Understanding a child's developmental level is crucial to understanding how to bring them along by using developmentally appropriate (not age appropriate) activities.</span><br />
<span style="font-family: Verdana, sans-serif;"><b> </b></span><br />
<span style="font-family: Verdana, sans-serif;">Second, many SLPs have a very top-down orientation. That is to say, they want to teach understanding, and then use that understanding to shape a child's behaviour, or what they will do having that understanding. As humans age, this is the proper way to teach - we have some understanding (even as very young children), so we act accordingly.</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">However, some children with autism, particular very young ones, or more severe ones, do not possess enough cognitive ability to understand. So we have to switch to a bottom-up approach, and this is where we use the principles of behaviourism or ABA. When you use this approach, a child doesn't need to understand why they are doing something, only to act in a certain way given a recognizable circumstance. The "why" is never taught, which is a key problem in generalization - to truly generalize something, you need to know why you are doing it, because you can never truly memorize all of the circumstances. You can approximate, but you'll never quite get all the way there.</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">Many SLPs have a tough time switching from top-down to bottom-up unless they work with a lot of children with severe autism. </span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">In terms of needs, any good SLP will begin with an assessment to get a sense of where they are starting, and then develop goals to know where they are going. The goals should be SMART - specific, measurable, attainable, relevant and time-bound. Most SLPs can do the specific, measurable and relevant part, but they miss attainable and time-bound. A good SLP will modify goals after time to ensure therapy money is not being wasted.</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">Last year, we spent thousands of dollars (intensive 2 hours a week therapy) working with our current SLP to use a technique called PROMPT to get A to speak. While this did increase A's sounds tremendously, she still could not form words consistently, and words she acquired she later lost or could not use consistently later. When I asked this SLP about goals, she agreed that for the present time continuing to work on some single words was appropriate, but A's daily communication could best be met through Augmentative Communication.</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;"><b>3. Do they have any experience working with verbal children with autism?</b></span><br />
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<span style="font-family: Verdana, sans-serif;">If your child is verbal, you need to know the answer to this question. Typically developing children with language delays are very socially motivated. SLPs with no experience with autism find it very challenging to engage children with autism when they have no practice doing so. If they cannot describe how they work with such children, walk away.</span><br />
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<span style="font-family: Verdana, sans-serif;">The Hanen program "More Than Words" is particularly useful for verbal children with autism and most SLPs in Canada have this training. If they do, it is a good sign. </span><br />
<span style="font-family: Verdana, sans-serif;"><b> </b></span><br />
<span style="font-family: Verdana, sans-serif;"><b>4. Do they have any experience working with non-verbal children with autism and AAC?</b></span><br />
<br />
<span style="font-family: Verdana, sans-serif;">When A was 16 months we took her to see a very young SLP. This woman was completely lost because at the time, A was totally unreachable. Social interactions were rare, crying was the norm for requests. Clearly, she was out of her element. We did not stay with her very long.</span><br />
<span style="font-family: Verdana, sans-serif;"><b> </b></span><br />
<span style="font-family: Verdana, sans-serif;">When A was older, we worked with another SLP, and this one was very experienced. However, she was completely untrained in the <a href="http://www.pecs.com/">Picture Exchange Communication System (PECS)</a>, which has a very specific protocol for teaching using behaviour techniques. At the time A was at phase IV - requesting with two pictures. This SLP was signing to A using total communication as well as prompting her to use 4-5 pictures on a sentence strip. A was simply overwhelmed at all of these new techniques. Sign was too abstract, and there were too many pictures and they represented some abstract concepts (especially adjectives) she had not yet learned. Clearly, this SLP did not have experience in the AAC we were using.</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">Because most children with autism develop speech, it is very hard to find good SLPs who know what to do with AAC devices, sign language or PECS. For most children, AAC is a stop along the way to speech, but for some, like A, it is where they will stay. </span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;"><b>5. Is this a person with whom you feel comfortable?</b></span><br />
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<span style="font-family: Verdana, sans-serif;">In the end, you will be spending a lot of time and money with your SLP. Even if it's not your money, it is time you will not get again, so make sure you don't waste it. The rapport the SLP has with you and your child is crucial to success.<b> </b></span><br />
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AutisticWisdomhttp://www.blogger.com/profile/01553708099437502270noreply@blogger.com2tag:blogger.com,1999:blog-5609025654658864946.post-85158524954090050622013-01-24T17:16:00.005-08:002013-01-24T17:16:39.701-08:00Ending Early Intervention<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhe2dk_o29Nh77hCfQL2x_PugthXd1uQnmnpM2sBJ2O15qmQS1YYSULbDLuFTqJYRnKjoVN5tDIz6FpS48KsU5_lKt8RNwXf0DJiuOyMpLrwlUdO7o0uZoAGwofWqHPtD9IErWPpSaioQz1/s1600/ei_graphic.gif" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="196" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhe2dk_o29Nh77hCfQL2x_PugthXd1uQnmnpM2sBJ2O15qmQS1YYSULbDLuFTqJYRnKjoVN5tDIz6FpS48KsU5_lKt8RNwXf0DJiuOyMpLrwlUdO7o0uZoAGwofWqHPtD9IErWPpSaioQz1/s320/ei_graphic.gif" width="320" /></a></div>
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<span style="font-family: Verdana, sans-serif;">As A approaches her sixth birthday (late this year), we are beginning to contemplate her next steps. Most programming in many jurisdictions end around age six, and although Ontario's IBI program does not have to end at age six, there is a lot of pressure from regional providers to put children into school once they are school age.</span><br />
<br />
<span style="font-family: Verdana, sans-serif;">When A was younger, I never used to want to say "she will not recover" because I did not want to limit her potential. As we approach school entry, however, I can now write that and not cringe. She has made so many gains in the past three years, but looking at her developmental trajectory, she will always be behind her peers, particularly in regards to communication, social skills, and academics. I do not think she will be independent and I think I am okay saying that. I still believe she would adapt well to assisted living, perhaps not requiring a group home, but living with some supports.</span><br />
<br />
<span style="font-family: Verdana, sans-serif;">So now, like so many parents before me, lies the crucial question. What next? What now?</span><br />
<br />
<span style="font-family: Verdana, sans-serif;">If past experience is any indicator, A can learn, but not observationally. She needs everything explicitly taught in a very systematic, step-by-step manner. Series of steps need to be chained together and a task analysis performed for anything beyond one step. Teaching her this way is doable, but it requires the teacher to have special training in ABA techniques.</span><br />
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<span style="font-family: Verdana, sans-serif;">A's community school has 500 students, 300 between ages 4 and 7. There are at least six children with ASD at the school. There is a high ESL population. There are other exceptionalities at the school. There are <i>four</i> education assistants (EAs).</span><br />
<br />
<span style="font-family: Verdana, sans-serif;">I suppose an IPRC for A and T would increase this amount of EAs... it may, or it may not. There are no guarantees of them having any knowledge of autism or ABA. There are no guarantees those principles will be used. Since A has very limited speech, there is no way I will really know what is going on at school. Although I would be less worried about T, he is just now beginning to tell us some of what he does in pre-school.</span><br />
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<span style="font-family: Verdana, sans-serif;">What to do?</span><br />
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<span style="font-family: Verdana, sans-serif;">Do I abandon A to the school system and begin saving money for her dependent future? Or do I continue to invest in teaching her skills, in the hopes she will have more options in her adulthood? She will not be completely independent, but the more skills she has, the more options she will have... and we can rest easy knowing we did our best to prepare her for the rest of her life.</span><br />
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<span style="font-family: Verdana, sans-serif;">Some children with autism learn so slowly, this may be an easier decision. Parents may know that learning will be slow, understand school is "something to do", and can save for the inevitable supports their child will need as an adult. Some do so well with IBI they can actually benefit from general education.</span><br />
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<span style="font-family: Verdana, sans-serif;">Then there is A, and many like her, in between. They do not learn fast enough to function in general education, but not so slowly a parent can feel stopping all real learning makes any sense. </span><br />
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<span style="font-family: Verdana, sans-serif;">Many parents have counselled me to be open to "inclusion" - even if A is at a JK level academically, that being in a grade one class makes sense. She will be invited to birthday parties. Kids will say hello to her. She'll have "friends" in school.</span><br />
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<span style="font-family: Verdana, sans-serif;">These are all nice things.</span><br />
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<span style="font-family: Verdana, sans-serif;">Will it make any difference at age 21 when she is finished school, and all of her friends in grade one are off to university? I wish A could tell me. If she said, "I want to go to school with everyone else", this decision would be so much easier. But she can't tell me, and I know she will get frustrated in general education, yet not pushed or challenged enough in special education.</span><br />
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<span style="font-family: Verdana, sans-serif;">What to do?</span><br />
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<span style="font-family: Verdana, sans-serif;">Socializing kids with autism is important, but I am not sure school is the place to do it. Developmentally, as our kids age, they are further behind their peers every year, especially socially. Some kids with autism are not as delayed, and so can benefit from the peer interaction. But when the gulf becomes wide - an eight year old functioning like a three year old, the "peer" interaction no longer makes sense. The social interactions of eight year olds are well beyond a three year old, unless adapted by the eight year old. </span><br />
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<span style="font-family: Verdana, sans-serif;">I think children with autism can be socialized outside school in community activities, such as camps, community service clubs, and leisure activities, as well as programs intended for people with special needs. </span><br />
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<span style="font-family: Verdana, sans-serif;">I think school is for learning.</span><br />
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<span style="font-family: Verdana, sans-serif;">What to do?</span><br />
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<span style="font-family: Verdana, sans-serif;">You'll have to wait to find out. But there is a plan. </span><br />
AutisticWisdomhttp://www.blogger.com/profile/01553708099437502270noreply@blogger.com3tag:blogger.com,1999:blog-5609025654658864946.post-14616414655430312892012-11-16T14:01:00.000-08:002012-11-16T14:01:06.068-08:00Shame on Me and Shame on Us<span style="font-family: Verdana, sans-serif;"><img alt="" class="rg_hi uh_hi" data-height="224" data-width="225" height="199" id="rg_hi" src="https://encrypted-tbn1.gstatic.com/images?q=tbn:ANd9GcTTeSBQZqJMkqS9RieEWbk2I0g48LWvHXiA7bxRisHVMtqYxZRb" style="height: 224px; width: 225px;" width="200" /> </span><br />
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<span style="font-family: Verdana, sans-serif;">A lot of attention has been given to the recent ruling at the Supreme Court of Canada. <a href="http://scc.lexum.org/decisia-scc-csc/scc-csc/scc-csc/en/item/12680/index.do">It recently ruled</a> that school boards in Canada must provide adequate services to children with disabilities and cannot justify not providing those services due to budgetary pressures.</span><br />
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<span style="font-family: Verdana, sans-serif;">From the Supreme Court Decision:</span><br />
<blockquote class="tr_bq">
<i><span style="font-family: Verdana, sans-serif;">This declaration of purpose is an
acknowledgment by the government that the reason all children are entitled to
an education, is because a healthy democracy and economy require their educated
contribution. Adequate special education, therefore, is not a dispensable
luxury. For those with severe learning disabilities, it is the ramp that
provides access to the statutory commitment to education made to </span><span style="font-family: Verdana, sans-serif;">all</span><span style="font-family: Verdana, sans-serif;">
children in British Columbia. </span><span style="font-family: Verdana, sans-serif;"> </span></i></blockquote>
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">The synopsis of this ruling is that Jeffrey Moore had dyslexia, and the school board did not provide adequate help. As a result, Moore went to a private school. The SCC is awarding his family full costs, and the school board has to pay. It will be interesting to see what implications this has for ABA provision in Ontario schools.</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;"><a href="http://www.theglobeandmail.com/commentary/editorials/supreme-court-ruling-on-special-education-opens-pandoras-box/article5169193/">The Globe and Mail</a> does not concur:</span><br />
<blockquote class="tr_bq">
<i><span style="font-family: Verdana,sans-serif;">The Supreme Court of Canada has opened a Pandora’s box for public school
boards by finding that a British Columbia school district discriminated
against a dyslexic child when, during a financial crisis, it closed a
special-education centre that provided him intensive help in learning to
read. From here on, schools, school boards or provinces could be forced
to bleed other programs to meet court-ordered educational standards for
special-needs students.</span></i></blockquote>
<span style="font-family: Verdana, sans-serif;">And it concludes:</span><br />
<blockquote class="tr_bq">
<i><span style="font-family: Verdana, sans-serif;">It makes the court’s unanimous ruling more out of touch that the boy’s
public education unfolded between 1991 and 1994, during and after a
recession marked by across-the-board restraint, and finally, the
overcoming of Canada’s deficit. Many political choices went into those
years, and similar choices await today; governments, accountable to
voters, should be the ones making those choices. The court overstepped
its authority.</span></i></blockquote>
<span style="font-family: Verdana, sans-serif;">I'm ashamed of us for thinking this way. This is the old mantra, <i>it costs too much</i>, and we can't afford it. Yet, as I have written before, no one seems to mind that we spent billions of dollars at the end of someone's life in hospital instead of acknowledging death is imminent... no one would allow that. So why do we allow school boards to write children off because of cost?</span><br />
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<span style="font-family: Verdana, sans-serif;">Most of all, I'm ashamed of myself. Ashamed that, without children on the spectrum, I would have agreed with the article. Shame on me.</span><br />
<br />
<span style="font-family: Verdana, sans-serif;">Why is this decision such a victory? Another quote from the <a href="http://www.thestar.com/news/gta/article/1286060--the-autism-project-students-with-autism-fend-for-themselves">Toronto Star</a>, on education in Ontario:</span><br />
<br />
<blockquote class="tr_bq">
<i><span style="font-family: Verdana,sans-serif;">Denise Martins, the principal at Danforth Collegiate, said the school
is doing the best it can based upon the staffing provided to us. The
school’s support program includes one full-time and one part-time
teacher, a child and youth worker and special needs assistant, and a
social skills class runs over the lunch hour.</span></i><br />
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<i><span style="font-family: Verdana,sans-serif;">But Ford says it’s not the school or teachers that are to blame; she
faults the board for not providing adequate resources. She says her son
is being bullied by other students.</span></i><br />
<br />
<i><span style="font-family: Verdana,sans-serif;">Other parents echo Ford’s frustrations with Ontario’s school system:
one mother says she stopped working because of daily calls to pick up
her son; another spent the night washing ink off her Grade 9 son after
he was accosted by older boys; some parents decide to transfer their
children to private school, spending thousands in tuition.</span></i></blockquote>
<span style="font-family: Verdana, sans-serif;">Here's the reason why school boards should not be able to hide behind budget constraints... as quoted by Ms. Martins. They are "doing the best based on the staffing provided to us." That's a cop-out. This SCC decision says that children are entitled to an education, and "the school board's best" may not be adequate anymore.</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">This decision does not reverse <a href="http://scc.lexum.org/decisia-scc-csc/scc-csc/scc-csc/en/item/2195/index.do?r=AAAAAQAFYXV0b24AAAAAAQ">Auton</a>, but it least it gives us hope for children getting what they need for a real education in school.</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;"> </span>AutisticWisdomhttp://www.blogger.com/profile/01553708099437502270noreply@blogger.com0tag:blogger.com,1999:blog-5609025654658864946.post-41390668539501551722012-11-10T19:29:00.000-08:002012-11-10T19:29:18.992-08:00Two Phrases You Should Never Say<div class="separator" style="clear: both; text-align: center;">
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<img alt="" class="rg_hi uh_hi" data-height="187" data-width="269" height="139" id="rg_hi" src="https://encrypted-tbn0.gstatic.com/images?q=tbn:ANd9GcSILe5KeY2AeHJYHfiq4ZORCth-NslLkXEKKcUFp74VGtKoM9yl" style="height: 187px; width: 269px;" width="200" /> </div>
<div style="margin-left: 1em; margin-right: 1em; text-align: left;">
<span style="font-family: Verdana, sans-serif;">There are two phrases a I hear a lot as an autism parent that I am writing to tell you - <i>don't say them</i>. If you say one phrase I'm about to describe, you'll just look silly, and if you say the other, you will be unkind.</span></div>
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<div style="margin-left: 1em; margin-right: 1em; text-align: left;">
<span style="font-family: Verdana, sans-serif;"><b>Phrase One</b> - <i>"<a href="http://www.blogher.com/why-were-all-autism-spectrum?page=0,1">We're all a little autistic</a>."</i></span></div>
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<div style="margin-left: 1em; margin-right: 1em; text-align: left;">
<span style="font-family: Verdana, sans-serif;">Sorry there slick. We're just not. There are "autistic like" behaviours people can have, because autism is defined by behaviour. But being socially awkward or a little OCD about where you like to sit doesn't mean you "have a little bit of autism". It's like saying to a clinically depressed person that "we're all depressed" when we sometimes feel sad, or saying to a person diagnosed with terminal cancer that "we all have a little bit of cancer" (which is not untrue, it's just that our immune system zapped the cells before they grew into a nasty tumour).</span></div>
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<span style="font-family: Verdana, sans-serif;"><i> </i></span></div>
<div style="margin-left: 1em; margin-right: 1em; text-align: left;">
<span style="font-family: Verdana, sans-serif;">Diagnostics exist for a reason, and based on said diagnostics, you either have autism or you don't. To say otherwise is ludricrous.</span></div>
<div style="margin-left: 1em; margin-right: 1em; text-align: left;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div style="margin-left: 1em; margin-right: 1em; text-align: left;">
<span style="font-family: Verdana, sans-serif;">By definition, enough autistic behaviours make you have autism. Do not try to "normalize" what for millions of people is a very difficult disability with which to live.</span></div>
<div style="margin-left: 1em; margin-right: 1em; text-align: left;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div style="margin-left: 1em; margin-right: 1em; text-align: left;">
<span style="font-family: Verdana, sans-serif;"><b>Phase Two - </b><i>"I don't know how you do it."</i></span></div>
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<div style="margin-left: 1em; margin-right: 1em; text-align: left;">
<span style="font-family: Verdana, sans-serif;">When I hear this, here is how it translate in my brain...</span></div>
<div style="margin-left: 1em; margin-right: 1em; text-align: left;">
<span style="font-family: Verdana, sans-serif;"><i> </i></span></div>
<div style="margin-left: 1em; margin-right: 1em; text-align: left;">
<span style="font-family: Verdana, sans-serif;"><i>"I am so glad this isn't my life."</i></span></div>
<div style="margin-left: 1em; margin-right: 1em; text-align: left;">
<span style="font-family: Verdana, sans-serif;"><i> </i></span><span style="font-family: Verdana, sans-serif;"><i> </i></span></div>
<div style="margin-left: 1em; margin-right: 1em; text-align: left;">
<span style="font-family: Verdana, sans-serif;">Unfornately this only serves to remind me that it is <u>my</u> life, even if it's not yours.</span></div>
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<div style="margin-left: 1em; margin-right: 1em; text-align: left;">
<span style="font-family: Verdana, sans-serif;">The reality is we are all very capable of dealing with what life throws at us if we are forced to do so. Circumstances shape our behaviour in a way we can't always imagine. As a parent who loves his children, I have two choices, either deal with it and do the very best I can, or give them up to child services and hope for the best. Since I could never do the latter, I am left with the former.</span></div>
<div style="margin-left: 1em; margin-right: 1em; text-align: left;">
<br /></div>
<div style="margin-left: 1em; margin-right: 1em; text-align: left;">
<span style="font-family: Verdana, sans-serif;">We do it because we have no choice. That doesn't make us heroes. It makes us human. </span></div>
<span style="font-family: Verdana, sans-serif;"></span><div style="margin-left: 1em; margin-right: 1em; text-align: left;">
<span style="font-family: Verdana, sans-serif;"><i> </i></span></div>
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<span style="font-family: Verdana, sans-serif;"><br /></span></div>
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<span style="font-family: Verdana, sans-serif;"><br /></span></div>
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AutisticWisdomhttp://www.blogger.com/profile/01553708099437502270noreply@blogger.com3tag:blogger.com,1999:blog-5609025654658864946.post-64664145540891480772012-11-01T18:45:00.000-07:002012-11-01T18:45:40.056-07:00Speech Is Not Language<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgfCy_09Ty9Qe8LHJKoClkmKcxvCN0QW1NUhH33Mb9QDHXJp2_gRSmQa-TPgREXK61omg084d3Ei8qmv11_14WV7swLRqJ1L21Ejp0UxGzlFtdb6GLq1xwUBinxWW1PgNdnZeRv978VHZxR/s1600/edl_2009_official_big.gif" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="180" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgfCy_09Ty9Qe8LHJKoClkmKcxvCN0QW1NUhH33Mb9QDHXJp2_gRSmQa-TPgREXK61omg084d3Ei8qmv11_14WV7swLRqJ1L21Ejp0UxGzlFtdb6GLq1xwUBinxWW1PgNdnZeRv978VHZxR/s320/edl_2009_official_big.gif" width="320" /></a></div>
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<span style="font-family: Verdana, sans-serif;">Perhaps one of my greatest frustrations with A has been her inability, even after years of therapy, to gain functional speech. She has made a lot of progress, from nothing to sounds and many approximations. But without augmentative communication in the form of an iPad, she is very difficult to understand.</span><br />
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<span style="font-family: Verdana, sans-serif;">It was cute to see tonight while she was cleaning up, she picked up a shape puzzle and put the pieces all in, and Mom and I listened ... oh so quietly, if we listened, we could hear her verbally label all of the shapes ... oval, star, square, rectangle... but even we had to listen so hard to make it out.</span><br />
<br />
<span style="font-family: Verdana, sans-serif;">Many people look at A and have low expectations of her because she cannot speak. </span><span style="font-family: Verdana, sans-serif;"><span style="font-family: Verdana, sans-serif;">A uses this to her advantage to get out of doing things she'd rather not do. </span>The assumption is that if she cannot speak she has nothing she wants to say. </span><br />
<br />
<span style="font-family: Verdana, sans-serif;">But, of course, nothing is further from the truth... there have been several times in the past where A has looked at me, said something I could not make out, and then was frustrated she had to go to her iPad to tell me something that may or may not be quite what she was trying to communicate.</span><br />
<br />
<span style="font-family: Verdana, sans-serif;">In many journals, outcome in autism is associated with the "acquisition of language". Clinicians will often say, "does A have language?" But that is not what they are <i>really</i> saying. They are really saying does she have verbal speech that is functional to communicate. Language and speech are commonly related, but they are not the same.</span><br />
<br />
<span style="font-family: Verdana, sans-serif;">A child like A might has language using augmentative systems (eventually we hope she will simply write her thoughts and have them read with voice output). She communicates with a voice output system (Proloque2Go) that works like an electronic version of PECS, but with much better organization.</span><br />
<br />
<span style="font-family: Verdana, sans-serif;">A child with speech may still not have functional language. Some children who are fluently verbal still use PECS or other augmentative systems because their speech is not functional. It is clear speech, but does not make sense, or communicate the intent of the speaker. A child who can repeat anything you say but say nothing spontaneously based on internal motivation has speech, but not language.</span><br />
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<span style="font-family: Verdana, sans-serif;">My son T has good speech and language, though he struggles with a lot of jargon and some delayed echolalia. Sometimes he drifts into "jibber jabbering" where very little communication occurs. He struggles to express his thoughts sometimes. But I have seen other children who use speech more like a "stream of consciousness" where almost all thoughts are being spoken, with little clarity of communication intent.</span><br />
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<span style="font-family: Verdana, sans-serif;">For A, what makes me feel hope is the increasing number of adults with autism who are non-verbal, yet are leading meaningful lives with a degree of independence, such as <a href="http://carlysvoice.com/home/">Carly Fleischmann</a>, <a href="http://jeremysicilekira.com/">Jeremy Sicile-Kira</a>, or the men (Tracy and Larry) of <a href="http://www.wretchesandjabberers.org/">Wretches & Jabbers</a> (a highly recommended film).</span><br />
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<span style="font-family: Verdana, sans-serif;">My sense is there is a sub-type of autism, and I think A has it, along with Carly and Jeremy and the men from W&J, that causes severe apraxia of speech. Jeremy, Carly, Tracy and Larry have all said their bodies do not co-operate with their desires - they don't move the way they direct them to move, and they struggle with intense sensory dysfunction. Having it explained makes me feel both happy to have understood A better, but also sad in knowing what she struggles to do in order to interact with her world.</span><br />
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<span style="font-family: Verdana, sans-serif;">I think Jeremy says it best...</span><br />
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<span style="font-family: Verdana, sans-serif;"><i>"</i></span><span style="font-family: Verdana, sans-serif;"><i>Good things about my autism is my ability to see beautiful colors in everything I look at. I see bright colors even in dust."</i></span><br />
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<span style="font-family: Verdana, sans-serif;">I have often wondered what A sees when she looks at things. I wonder if she sees bright colours too.<i> </i></span><br />
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<span style="font-family: Verdana, sans-serif;"><i> </i> </span>AutisticWisdomhttp://www.blogger.com/profile/01553708099437502270noreply@blogger.com1tag:blogger.com,1999:blog-5609025654658864946.post-16741484410402195682012-08-15T09:05:00.000-07:002012-08-15T09:06:42.134-07:00This Could Be You<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi4FMaUGZLlDJN3pGtP85q2xgvXE1JXFmDPWTMlv9ULKyglqkXKVInCjDTK2oIqsqLDJMqGDgUm670hB6HnRRWdU4-ywTUxq0IotHAsG_FlcXErJlerldUDgwAAp89jQg7VvQZDRBywvvxv/s1600/colleen.ca" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi4FMaUGZLlDJN3pGtP85q2xgvXE1JXFmDPWTMlv9ULKyglqkXKVInCjDTK2oIqsqLDJMqGDgUm670hB6HnRRWdU4-ywTUxq0IotHAsG_FlcXErJlerldUDgwAAp89jQg7VvQZDRBywvvxv/s1600/colleen.ca" /></a></div>
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<span style="font-family: Verdana, sans-serif;">Colleen Cunningham, a mother in Sarnia, is facing my greatest fear. Her son Nathan, now 21, has cerebral palsy and has severe disability. He requires 24 hour care. You can read more about her story <a href="http://www.lfpress.com/news/london/2012/08/14/20100396.html">here</a>.</span><br />
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<span style="font-family: Verdana, sans-serif;">Based on what I can glean from this article, Colleen is alone, aging, and her own health is failing. Her son will never be independent. But there is no room for him in a group home. Colleen's desperate solution is to abandon him in respite care, forcing the government to intervene in his care.</span><br />
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<span style="font-family: Verdana, sans-serif;">My heart aches for this mother. No one wants to abandon their children, and the irony is that Nathan could probably remain at home if Mom had some supports, but there is "no money" in agency budgets. Other support services in Ontario, such as "Special Services at Home", have been frozen since 2007 or earlier. You can apply for such services and be awarded money, but you are wait listed. As families give up their funding, the funding is clawed back by the government. Why we are paying bureaucrats to collect names and determine pretend grant amounts while people with disabilities get no support is beyond me.</span><br />
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<span style="font-family: Verdana, sans-serif;">Do you have children with disabilities? This could be you someday.</span><br />
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<span style="font-family: Verdana, sans-serif;">Children with severe autism are transitioned into a school system that is not designed for their needs, and inclusion zealots are happy we do this. Inclusion is cheaper and better for the child, according to them.</span><br />
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<span style="font-family: Verdana, sans-serif;">Here is the harsh reality for many children with severe autism. While they are included in classrooms, they may, if they are lucky, meet some children in schools who are willing to be their "friends". I don't discount how happy this will make some parents, including me. But at age 21, those elementary school friends are long gone and are probably replaced by support workers. Inclusion is a happy place for the time, but that friendship is temporary and does not help the child gain long-term skills needed for independent living. My own daughter A has friends close to her age, but it is not an even relationship. It takes a special person to be friends with A, and as A ages and becomes developmentally further behind (at least socially), these special people will become harder to find.</span><br />
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<span style="font-family: Verdana, sans-serif;">School is a place for academic learning and socialization. Yet very few schools have any formal teaching for socialization because the vast majority of children come to school with basic skills and learn the ropes as they go. For many kids with autism, academic skills beyond literacy, writing and numeracy are not very important. <i>Life skills</i>, or <i>adaptive skills</i>, are much more important. I would rather spend a day teaching A how to use a public washroom then say teaching her about native Canadian villages. But schools aren't designed to teach kids about using public washrooms, because most children don't need special training to learn this skill.</span><br />
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<span style="font-family: Verdana, sans-serif;">Parents, ask yourselves - when school is done at 21, are you comfortable knowing your child learned all they could to be as independent as possible? If not, in my opinion, time was wasted. Because in the end, the responsibility for the child falls back to you. There is no schooling after age 21 in most jurisdictions, and in Ontario at least, getting into a group home is no easy task.</span><br />
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<span style="font-family: Verdana, sans-serif;">I admire parents who say they "accept the autism" and "just enjoy their children". I think sometimes parents need to let kids be kids, disability or not. But we also have a duty to our children, and for our own sanity, to prepare our children to be independent. To me, that means making the most of every opportunity, and it means the public school system is no place for A.</span><br />
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<span style="font-family: Verdana, sans-serif;">Early intervention is touted as a way to save money by "teaching children how to learn" and allowing them to achieve "average functioning". Yet very few children do so. In Ontario's IBI program, the proportion of children meeting average functioning <a href="http://www.sciencedirect.com/science/article/pii/S1750946708000159">is only 11% of discharges</a>. There are also no studies indicating if children in this program retain their level of functioning after they enter the school system. In other words, IBI gets them to a certain level of functioning, but we don't know if they can maintain that level once the intensive supports are removed in a school setting.</span><br />
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<span style="font-family: Verdana, sans-serif;">I don't want Colleen's story to be mine in 16 or so years from now. Do you?</span><br />
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<span style="font-family: Verdana, sans-serif;">Inclusion is no solution - children need life skill teaching from discharge. It's too bad Ontario's public education model will never put the individual's needs beyond that of its employees. Shame on us for letting it happen.</span><br />
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AutisticWisdomhttp://www.blogger.com/profile/01553708099437502270noreply@blogger.com3tag:blogger.com,1999:blog-5609025654658864946.post-15024408233577424362012-07-03T20:02:00.001-07:002012-07-03T20:02:08.552-07:00The other shoe drops...<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjnep6hHfbbURG5b3U3w4iNirxSJ8oOoPIE1NLrf2GjQj9pXhziHIDkad8-KsKo68wewpFD9CCoAVd8FSR-njhRrKYltj7AqZMDgmXHkBXkgdA1IkGbmjMok7x70uQlpRu_S63UK3AO51do/s1600/shoedrop.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjnep6hHfbbURG5b3U3w4iNirxSJ8oOoPIE1NLrf2GjQj9pXhziHIDkad8-KsKo68wewpFD9CCoAVd8FSR-njhRrKYltj7AqZMDgmXHkBXkgdA1IkGbmjMok7x70uQlpRu_S63UK3AO51do/s1600/shoedrop.jpg" /></a></div>
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<span style="font-family: Verdana,sans-serif;">I've been awfully quiet of late. Perhaps for some of you that's a good thing.</span><br />
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<span style="font-family: Verdana,sans-serif;">For many parents, once an autism diagnosis is given they have to ask themselves a very difficult question: should we have more children? This is a tough question to answer. The reason why it's asked is because autism has a strong genetic basis, and based on recent research the risk of having another affected child is 25%. Some parents might be willing to play these odds... a 75% win rate is pretty good, after all.</span><br />
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<span style="font-family: Verdana,sans-serif;">Having unaffected siblings is attractive for so many reasons. As a parent, you have a special needs child but you also have typical children, which can somewhat dampen the heartache of having a child with autism. Selfishly, this means you can experience having a typical parent-child relationship. Some days, you can leave your special needs child at home and experience life as a "typical family" (I'm sorry if this offends some of you, but I am writing how I feel and this is the truth.)</span><br />
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<span style="font-family: Verdana,sans-serif;">Although I would never choose to expect or burden T with taking care of A when we die, I would hope that he would love her enough to do so. So in that way, having a typical sibling is very comforting.</span><br />
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<span style="font-family: Verdana,sans-serif;">Except he isn't.</span><br />
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<span style="font-family: Verdana,sans-serif;">We have been concerned with T for several months now, on and off. He has always lined up his toys, but his social communication was becoming more and more inappropriate. He never greeted us, didn't use "mommy and daddy" without prompting, and had a lot of delayed echolalia. Add in his difficulty with change, transition and insistence on sameness, and blammo, you have... autism. Again.</span><br />
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<span style="font-family: Verdana,sans-serif;">Luckily, he is mild and will be getting the "PDD-NOS" designation. He is fully verbal and has some great social skills. He's a great kid and I don't love him any less, but I grieve for him because I know his life will be harder... and for us too. </span><br />
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<span style="font-family: Verdana,sans-serif;">I thought this would be easier than the first time around, but it's not. I'm still angry. I'm still sad. But it is what it is.</span><br />
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<span style="font-family: Verdana,sans-serif;"><i>"Happiness can only exist in acceptance."</i></span><br />
<span style="font-family: Verdana,sans-serif;"><i> - George Orwell </i> </span><br />
<br />AutisticWisdomhttp://www.blogger.com/profile/01553708099437502270noreply@blogger.com10tag:blogger.com,1999:blog-5609025654658864946.post-32699906386848116112012-04-15T18:15:00.001-07:002012-04-15T18:16:52.038-07:00Toronto Board of Education and Ontario's Double Standard<span style="font-family: Verdana,sans-serif;">The Toronto District School Board has decided to <a href="http://m.theglobeandmail.com/news/national/toronto/classroom-assistants-respond-to-education-industry-demands/article2399401/?service=mobile">follow thorough on its plans</a> to eliminate 87% of Education Assistants. Over 400 education assistants will be laid off, and over 400 early childhood educators (ECEs) will be hired to replace them. ECEs are required by Ontario law to deliver the new full-day kindergarten program.</span><br />
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<span style="font-family: Verdana,sans-serif;">Don't feel too bad for the educational assistants though. The government has offered to hire them as ECEs if they will complete their ECE training at a local college within two years. </span><br />
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<span style="font-family: Verdana,sans-serif;">I have <a href="http://autisticwisdom.blogspot.ca/2012/03/latest-toronto-school-board-plan-proves.html">posted before</a> on how unfair this is to special needs students. Don't be fooled - the lack of assistance for students will result in more students being sent home or attending for partial school days only. Parents will have to fight more than ever for services that should be provided to them freely.</span><br />
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<span style="font-family: Verdana,sans-serif;">If that is not unfair enough, consider the double standard the government applies to early childhood education and special education. Apparently, to work with four and five year old children in an educational setting, you need a <a href="http://www.humber.ca/program/early-childhood-education#curriculum">one or two year diploma </a>to qualify you to deliver this education.</span><br />
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<span style="font-family: Verdana,sans-serif;">Colleges in Ontario have offered a good program in <a href="http://www.lambton.on.ca/Programs/FT_Program_page.aspx?id=8443&type=CL">Autism and Behavioural Science</a> for years now, yet no educational staff who work with children with autism require this diploma. Tell me why an untrained educational assistant is qualified to work with children with autism, yet that same EA requires a year or more of training to work with young, typical children?</span><br />
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<span style="font-family: Verdana,sans-serif;">There is no choice for children with autism in Ontario. Either the child is home-schooled (partially or full-time), the parents are on the hook for the full cost of their education, or parents must flee the jurisdiction. Don't worry though, little Jonny is getting a fully trained early childhood educator and can attend school all day. It'll save his parents a bundle on child care. What's not to like about that? </span>AutisticWisdomhttp://www.blogger.com/profile/01553708099437502270noreply@blogger.com2tag:blogger.com,1999:blog-5609025654658864946.post-42105443004665648012012-03-22T14:09:00.000-07:002012-03-22T14:09:53.731-07:00Latest Toronto School Board Plan Proves No Accountability in Special Education<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj2Gva5Y9CoeusulA4BVq86Dt_8q2Or5ZrMX5DKxZAKWmWdvtVejdvSSETQsO65Wwd53DP3XWXi5YwKZMgkN37ypl17IsJNI8bQrD8rf7z_34oDQYAEQ-g7u29TB6Ltv80VLdN6z7AsNCm0/s1600/TDSB.gif" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj2Gva5Y9CoeusulA4BVq86Dt_8q2Or5ZrMX5DKxZAKWmWdvtVejdvSSETQsO65Wwd53DP3XWXi5YwKZMgkN37ypl17IsJNI8bQrD8rf7z_34oDQYAEQ-g7u29TB6Ltv80VLdN6z7AsNCm0/s1600/TDSB.gif" /></a></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgcmskpy_YFzadeuEQdq4dHwhPYZD7a7Jz3Fzc4vht2P-_s9BSfBYxNUH98z67ELdkXRjhKqDKuMr2gprEVSNu5dzfuCHMj2E3DsSZfD1KspsudG690m5l-CDn9MNK4cy4bKRFkxtmNojMs/s1600/TDSB.gif" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="34" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgcmskpy_YFzadeuEQdq4dHwhPYZD7a7Jz3Fzc4vht2P-_s9BSfBYxNUH98z67ELdkXRjhKqDKuMr2gprEVSNu5dzfuCHMj2E3DsSZfD1KspsudG690m5l-CDn9MNK4cy4bKRFkxtmNojMs/s320/TDSB.gif" width="320" /></a></div><br />
<span style="font-family: Verdana,sans-serif;">The Toronto District School Board is <a href="http://www.theglobeandmail.com/news/national/toronto/suggested-cuts-at-toronto-schools-called-a-bloodbath/article2376094/">considering a proposal</a> to balance its budget by reducing educational assistants by 87% (reducing 493.5 full time equivalent positions to just 63.5 positions). The stated reasoning is to hire 400 early childhood educators to fulfill the board's requirements in implementing full-day learning for four and five year old students.</span><br />
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<span style="font-family: Verdana,sans-serif;">Special education funding is very seriously misused in Ontario. Although money is allocated for special education, it is given to each school board to do with as it pleases (a fact stated by an education official in the above article:</span><br />
<blockquote class="tr_bq"><span style="font-family: Verdana,sans-serif;">A spokesman for the education ministry, Grahame Rivers, said funding for the TDSB has increased since 2003.<br />
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“<u><b>Ultimately, it is the TDSB’s decision how to best allocate resources in Toronto schools</b></u>,” he said.</span></blockquote> <span style="font-family: Verdana,sans-serif;">Funding is increasing, but funding does not follow each student. It is allocated based on the needs of the board. In this way, "special education funding" is a joke - there is no accountability in the way the funds are spent. Why even bother having distinct funding streams if the boards can spend any way they please?</span><br />
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<span style="font-family: Verdana,sans-serif;">How is it fair that hundreds of students with special needs are having support staff taken away so that hundreds of four and five year old children have a longer school day? Schools will do what they can, but the result of this change will result in most students not attending school or attending with reduced hours. Luckily A is not yet in school, but if she were (and she is old enough to go into early years education) there is no way she could attend without support and actually learn anything.</span><br />
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<span style="font-family: Verdana,sans-serif;">Some of you may disagree with me on this, but I don't even believe full-day early learning is needed. I believe it is a back-door way of getting free childcare in Ontario so that parents get a free ride.</span><br />
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<span style="font-family: Verdana,sans-serif;">Interestingly, a <a href="http://journalistsresource.org/studies/government/civil-rights/head-start-study/">study </a>in the United States on their Head Start program (which includes pre-school education, nutrition and other services for low income families) states that:</span><br />
<blockquote class="tr_bq"><span style="font-family: Verdana,sans-serif;">The benefits of access to Head Start at age four are largely absent by 1st grade for the program population as a whole.</span></blockquote><span style="font-family: Verdana,sans-serif;">Obviously we can't compare this directly to Ontario's program since in the United States kindergarten is not full-time. However, early learning at the four-year old level does not appear (in this study) to influence academic trajectory.</span> <br />
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<span style="font-family: Verdana,sans-serif;">Ironically, parents who try to assist the schools by trying to provide staff of their own are re-buffed and educational assistants will grieve any attempt to put in staff because that person is taking the job away from a unionized EA. A parent cannot put their own staff in place to help their child, but they also cannot rely on the school to do so either, especially with so few EAs available</span> <span style="font-family: Verdana,sans-serif;">(now just 64 education assistants for a city of almost three million people).</span><br />
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<span style="font-family: Verdana,sans-serif;">So for parents of typical children who are four and five:</span><br />
<ul><li><span style="font-family: Verdana,sans-serif;">They pay taxes</span></li>
<li><span style="font-family: Verdana,sans-serif;">Both parents can work with free child-care, a.k.a. full day learning</span></li>
<li><span style="font-family: Verdana,sans-serif;">Extra income = more opportunities</span></li>
<li><span style="font-family: Verdana,sans-serif;">And if you're in Toronto... special academy schools for kids in music and leadership </span></li>
</ul><span style="font-family: Verdana,sans-serif;">For parent of children with special needs:</span><br />
<ul><li><span style="font-family: Verdana,sans-serif;">They pay taxes</span></li>
<li><span style="font-family: Verdana,sans-serif;">Their children must attend fewer hours or not at all</span></li>
<li><span style="font-family: Verdana,sans-serif;">One parent must remain home to home-school or be around when the school ejects the student, or must work full-time to pay for private education</span></li>
<li><span style="font-family: Verdana,sans-serif;">Parents cannot pay for an EA themselves even if they have the means due to union grievances</span></li>
<li><span style="font-family: Verdana,sans-serif;">The dollars spent per child for regular children are not refunded to them - they pay the same tax for less service</span></li>
</ul><span style="font-family: Verdana,sans-serif;">In short, if you are a regular kid, the system works. If you're not, you're screwed.</span><br />
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<span style="font-family: Verdana,sans-serif;">Fairness is not when everyone gets the same thing. It's when everyone gets what they need to be successful. This isn't fairness. It's time for special education funding to follow the children they are to fund.</span><br />
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<span style="font-family: Verdana,sans-serif;">I feel sorry for the parents of kids in Toronto. </span>AutisticWisdomhttp://www.blogger.com/profile/01553708099437502270noreply@blogger.com6tag:blogger.com,1999:blog-5609025654658864946.post-3768506019413288912012-01-26T07:41:00.000-08:002012-01-26T07:41:50.512-08:00Great Entertainment, Poor Reality<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgBFwUQ9JyYsAa3Ky3XaIzD4WiX0PFYgCOD4ts9xCWe6p-0FHp01RKTwCW7jQPVr8fksmdhX9tESU48PrMlCfj61KPb0REwgn9-Zscd42RssGS1Na-BD0Q__G7sEaM8MSnywPik99HvjvJi/s1600/touch-tv-series.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgBFwUQ9JyYsAa3Ky3XaIzD4WiX0PFYgCOD4ts9xCWe6p-0FHp01RKTwCW7jQPVr8fksmdhX9tESU48PrMlCfj61KPb0REwgn9-Zscd42RssGS1Na-BD0Q__G7sEaM8MSnywPik99HvjvJi/s320/touch-tv-series.jpg" width="215" /></a></div><br />
<span style="font-family: Verdana,sans-serif;">The new drama <a href="http://screenrant.com/tim-kring-touch-plot-details-mcrid-104152/"><i>Touch</i></a> starring Kiefer Sutherland is about a boy who, although autistic, has the ability to manipulate numbers, see patterns, and appears to be able to predict the future.</span><br />
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<span style="font-family: Verdana,sans-serif;">This makes for great entertainment but exacerbates the stereotypes of autism and autism reality. At least the boy is non-verbal - this is a rarity in depiction of autism although it will be interesting to see how they get him to communicate.</span><br />
<span style="font-family: Verdana,sans-serif;"> </span><br />
<span style="font-family: Verdana,sans-serif;">When we first found out A has autism, we ourselves thought this meant she would have an extraordinary gift in some area. This is called <a href="http://en.wikipedia.org/wiki/Autistic_savant">savantism</a>, and it is actually very <a href="http://www.wisconsinmedicalsociety.org/system/files/savant_article.pdf">rare</a>. </span><br />
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<span style="font-family: Verdana,sans-serif;">Jacob, the protagonist, is actually a prodigious savant. The different between regular savants and </span><span style="font-family: Verdana,sans-serif;">prodigious savants is that </span><span style="font-family: Verdana,sans-serif;">prodigious savants have a skill that would be considered unusually amazing even in a person without developmental disability. This condition is even rarer (in the above article, 50 people in the whole world).</span><br />
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<span style="font-family: Verdana,sans-serif;">Good entertainment, but bad for educating others about autism reality. I don't suppose people really want to watch <a href="http://en.wikipedia.org/wiki/Fly_Away_%28film%29">Fly Away</a> anyway. Too bad - that is much closer to reality.</span><br />
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<span style="font-family: Verdana,sans-serif;"> </span>AutisticWisdomhttp://www.blogger.com/profile/01553708099437502270noreply@blogger.com1tag:blogger.com,1999:blog-5609025654658864946.post-83155856159179780702012-01-26T03:53:00.000-08:002012-01-26T03:53:42.936-08:00Much Ado About the DSM-5<span style="font-family: Verdana, sans-serif;">There has been much discussion lately, both in the blog-sphere and in some on-line news feeds about the upcoming changes to the Diagnostic and Statistical Manual Revision 5 (DSM5). This guide, produced by the American Psychological Association, is used to diagnose disorders that are primarily behavioural, or that have no known cause with specific diagnostic tests. There is no known blood test for depression, for example - you have it if you exhibit certain behaviours in a specific way.</span><br />
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<span style="font-family: Verdana, sans-serif;">Autism is defined in the DSM5, and the definition is changing. Currently, Autism Spectrum Disorder refers to any one of three conditions: "classic" autism, PDD-NOS, and Asperger's Syndrome. <a href="http://www.bbbautism.com/diagnostics_psychobabble.htm">A good definition of autism and PDD-NOS is here</a> and it gives good examples for the uninitiated.</span><br />
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<span style="font-family: Verdana, sans-serif;">With Asperger's Syndrome, cognitive and language development, as well as daily living skills, are unimpaired. With Asperger's Syndrome, the primary deficit is language as it is used for social purposes. This includes social spoken language and non-verbal cues. Asperger's Syndrome also includes repetitive behaviours but these tend more toward intensive interests or routines with no function rather than <a href="http://dictionary.reference.com/browse/stereotypies">stereotypies </a>(it is more likely you will see a child obsessed with dinosaurs and needs to go home a certain way over hand flapping, for example).</span><br />
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<span style="font-family: Verdana, sans-serif;">This triad of disorders is well established and most autism services are based on these diagnoses. The DSM5 purports to eliminate these three disorders and replace it with a single diagnosis: <a href="http://www.dsm5.org/proposedrevision/pages/proposedrevision.aspx?rid=94">Autism Spectrum Disorder</a>.</span><br />
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<span style="font-family: Verdana, sans-serif;">This new label has many concerned because it may cause several people who presently have autism to fall off the spectrum into a new diagnostic category. This isn't a bad thing in itself, except that once identified with a condition, it is difficult to let that go when nothing has changed except the DSM manual. Further, and more importantly, legislation is notoriously slow in catching up with realities and services will be denied to people who previously would be eligible.</span><br />
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<span style="font-family: Verdana, sans-serif;">Concern has <a href="http://www.nytimes.com/2012/01/20/health/research/new-autism-definition-would-exclude-many-study-suggests.html?_r=1">come in the media</a> not surprisingly from people concerned with the higher functioning end of the spectrum (Asperger's and PDD-NOS). These individuals may revert to <a href="http://www.dsm5.org/proposedrevision/pages/proposedrevision.aspx?rid=489">Social Communication Disorder</a> if they lack many repetitive behaviours, whereas before it would have been autism.</span><br />
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<span style="font-family: Verdana, sans-serif;">Concern has also come from the <a href="http://autisminnb.blogspot.com/2012/01/catherine-lord-confesses-dsm-5-autism.html">more silent side of the spectrum</a>, people who have autistic disorder but also intellectual disability, which comprises a sizable portion of the people with full blown autism. Because of the phrase that ASD "cannot be accounted for by general developmental delays", there is concern people with autistic disorder will revert to <a href="http://www.dsm5.org/proposedrevision/pages/proposedrevision.aspx?rid=384">Intellectual Development Disorder</a>.</span><br />
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<span style="font-family: Verdana, sans-serif;">The authors of the DSM-5 believe these changes will enhance the specificity of the diagnosis. I don't disagree, but concern is primarily around (a) identification with a disorder and (b) services associated with a disorder.</span><br />
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<span style="font-family: Verdana, sans-serif;">One might think the easiest way to solve this problem is just to extend current autism services to those now qualifying for social communication disorder (SCD) or intellectual development disorder (IDD). The problem with this, of course, is that by re-classifying autism and spreading existing ASD over these broader categories is that there will be many people with SCD and IDD who were never diagnosed with autism and legislators will be loath to increase costs by increasing services for now what is a much larger group of people. SCD is a new diagnosis and appears to be designed to catch people who fall out of ASD so at least they have "some label".</span><br />
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<span style="font-family: Verdana, sans-serif;">This will put enormous pressure on clinicians to give an ASD diagnosis when SCD or IDD is warranted, especially when an ASD diagnosis was indicated on the DSM-IV. In short, the muddy waters will be worse than before.</span><br />
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<span style="font-family: Verdana, sans-serif;">Personally I feel the better approach would have been to combine autistic disorder with PDD-NOS as "Autism" and leave Asperger's Syndrome alone, combining the two under "Autism Spectrum Disorder". It is grossly unfair to millions of people who presently have autism to be re-classified as IDD alone. Similarly, I sympathesize with people who have supports with Asperger's Syndrome but now do not with SCD.</span><br />
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<span style="font-family: Verdana, sans-serif;">I think A will remain diagnostically ASD, but now that language impairment is removed from the autism criteria as well, she would have co-morbid <a href="http://www.dsm5.org/ProposedRevision/Pages/proposedrevision.aspx?rid=486">Language Impairment</a> as defined by the DSM-5.</span><br />
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<span style="font-family: Verdana, sans-serif;">Watch for a little chaos in 2013. </span>AutisticWisdomhttp://www.blogger.com/profile/01553708099437502270noreply@blogger.com0tag:blogger.com,1999:blog-5609025654658864946.post-55908410797394115132012-01-16T14:06:00.000-08:002012-01-16T14:09:16.485-08:00What is your life worth?<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgRJ7O9z802EVKYm1PB6Zki5ylfBexxLf1uU8CXeAEGNqTdxm2GZkJWsMMTFTsbS_f5_ClhSCWWB33GPEFZq4pSg7oRgvTFUA9QpyhyphenhyphenKeicF8xq71SHvdw67oc18qnMBw0BVIQPKJJVeKuz/s1600/children.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgRJ7O9z802EVKYm1PB6Zki5ylfBexxLf1uU8CXeAEGNqTdxm2GZkJWsMMTFTsbS_f5_ClhSCWWB33GPEFZq4pSg7oRgvTFUA9QpyhyphenhyphenKeicF8xq71SHvdw67oc18qnMBw0BVIQPKJJVeKuz/s320/children.jpg" width="240" /></a></div><br />
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<span style="font-family: Verdana,sans-serif;">I am generally not a fan of re-printing material verbatim from other locations on the web, or re-hashing a discussion to which I may simply give a link. But in this case, I will make an exception because it is so important it deserves an exception.</span><br />
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<span style="font-family: Verdana,sans-serif;">Amelia is a little girl with Wolf-Hirsch-horn syndrome. You can read her story <a href="http://www.wolfhirschhorn.org/2012/01/amelia/brick-walls/">here</a>.</span><br />
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<span style="font-family: Verdana,sans-serif;">The short version of her story is that she needs a kidney transplant, and this surgery is potentially dangerous due to potential brain damage. The problem is that the attending physician does not believe Amelia should have the surgery because she is "mentally retarded". I am not sure of all of the governmental rules of organ donation in the United States but it appears your IQ and adaptive functioning are enough to condemn you to death if you need a new organ.</span><br />
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<span style="font-family: Verdana,sans-serif;">Keep in mind that by definition 2% of the population is "mentally retarded" because this diagnosis is based on cognitive ability combined with adaptive behaviour (ability to communicate, socialize, and take care of one's self) relative to the rest of the population. By definition, 2% of the population is always mentally retarded. We can get collectively smarter or better at being independent, or collectively less smart and less independent, and 2% of us will still be "mentally retarded". In other words, this diagnosis is not criterion based (if can't do X, then they are "mentally retarded")!</span><br />
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<span style="font-family: Verdana,sans-serif;">The doctor's response was bad enough, but the social worker's response was even more appalling. She was in the family interview to try to convince the family to give up, because hey, Amelia won't go far in life anyway, and when she needs yet another kidney in 10 years, Amelia's parents may not even be around to take care of her.</span><br />
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<span style="font-family: Verdana,sans-serif;"><i>Really?</i> That's the value we put on a life? What a slippery slope we have started. Mentally retarded today, perhaps tomorrow the elderly, or the low class factory worker. In fact, why not simply ration all health care based on our usefulness to society and our potential measure of quality of life? It's well known in Canada, for example, that people aged 65 years or higher cost double the annual health bill of people under 65, and people 75 and older double the 65-year old people. Easy way to save money - if you are 65 or older, pay your own way or suffer because hey, you might need more surgery later and what are you going to do with your life anyway? You're 65!</span><br />
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<span style="font-family: Verdana,sans-serif;">If <u>anyone</u> spouted off this nonsense they would be laughed off or lynched with extreme prejudice. But apparently my logic does not apply to "mentally retarded" people at the Children's Hospital of Philadelphia.</span><br />
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</span>AutisticWisdomhttp://www.blogger.com/profile/01553708099437502270noreply@blogger.com0tag:blogger.com,1999:blog-5609025654658864946.post-29213279922500591372012-01-11T17:10:00.000-08:002012-01-11T17:10:24.336-08:00New beginnings<span style="font-family: Verdana,sans-serif;">“<b>Every</b> day is a new beginning. Treat it that way. Stay away from what might have been, and look at what can be.”</span><br />
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<span style="font-family: Verdana,sans-serif;">"Today's decisions are tomorrow's realities." </span><br />
<span style="font-family: Verdana,sans-serif;"><i>- Marsha Petri Sue</i></span><br />
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<span style="font-family: Verdana,sans-serif;">As we enter 2012, I am trying to keep Marsha's words in mind. Our long-time senior therapist has resigned to pursue a career at the local regional provider and we are adjusting to the change.</span><br />
<span style="font-family: Verdana,sans-serif;"><i> </i></span><br />
<span style="font-family: Verdana,sans-serif;">One of the traps I am trying to avoid is "have we done enough?" Years from now, like many parents, I will look back and ask if we did enough intervention with A to try to ameliorate her autism. The harder we work now, the easier later will become.</span><br />
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<span style="font-family: Verdana,sans-serif;">Parents of a newly diagnosed child desperately seek a way to help their child "recover" from autism, a loaded phrase, but essentially a phrase meaning their child achieves average functioning in most areas. The success of many children is still a minority - <a href="http://www.oadd.org/docs/41007_JoDD_16-2_17-32_FreemanPerry_v9f.pdf">very few children meet this milestone</a>. I am learning to focus less on recovery as a goal and instead look at how far we have come, and how far A has come relative to most others with autism.</span><br />
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<span style="font-family: Verdana,sans-serif;">Perhaps my biggest disappointment is A's inability to develop functional spoken language, despite trying everything. She has some words, but her articulation is very unclear. She is able to communicate well with her iPad and for this I am very thankful, but it is still not the same. In fact, I have had people comment that if not for the iPad they might have trouble detecting her autism as easily.</span><br />
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<span style="font-family: Verdana,sans-serif;">Looking back, I have to be content that we did everything "right", and the present reality is best outcome for us...</span><br />
<ul><li><span style="font-family: Verdana,sans-serif;">She was diagnosed at 22 months</span></li>
<li><span style="font-family: Verdana,sans-serif;">ABA began at 22 months</span></li>
<li><span style="font-family: Verdana,sans-serif;">Funded EIBI began at 30 months</span></li>
<li><span style="font-family: Verdana,sans-serif;">Tried PROMPT, intensive speech therapy for hours </span></li>
</ul><span style="font-family: Verdana,sans-serif;">So as we begin a new year, I'm trying to look forward with this in mind - thinking about what might have been is useless. We have to look to the future and measure A's future progress against her present ability instead of grasping at recovery.</span>AutisticWisdomhttp://www.blogger.com/profile/01553708099437502270noreply@blogger.com1tag:blogger.com,1999:blog-5609025654658864946.post-74671885209634437722011-11-21T20:40:00.000-08:002011-11-21T20:40:43.660-08:00Sometimes Exclusion Is the Most Inclusive Policy<div class="separator" style="clear: both; text-align: center;"></div><div class="separator" style="clear: both; text-align: center;"></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj3SMr-QQFBFSgcdW2cnW8-DgWbadADqpNGlgE0EkCtfpNnJiDNNMZ0Y25pISwfsC9aIh7jIn2LPEm0QYJ6uYjqgjo6-tK4qtPPWKfYV_vmsJJn-fOpvfYScaxPsB4CK-ssw1ikfnAuej0p/s1600/inclusion.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="236" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj3SMr-QQFBFSgcdW2cnW8-DgWbadADqpNGlgE0EkCtfpNnJiDNNMZ0Y25pISwfsC9aIh7jIn2LPEm0QYJ6uYjqgjo6-tK4qtPPWKfYV_vmsJJn-fOpvfYScaxPsB4CK-ssw1ikfnAuej0p/s320/inclusion.jpeg" width="320" /></a></div><i><span style="font-family: Verdana,sans-serif;">The future that we hold in trust for our own children will be shaped by our fairness to other people's children.</span></i><br />
<i><span style="font-family: Verdana,sans-serif;"> - <b>Marian Wright Edelman</b></span></i><br />
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<span style="font-family: Verdana,sans-serif;">As we get closer to Alanna's inevitable transition from IBI into the school system (a transition I anticipate with much dread), I am forced to contemplate the whole idea of inclusion and what it really means.</span><br />
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<span style="font-family: Verdana,sans-serif;">Most educators seem to press for "inclusion" - that is, for a child with special needs to be part of a regular classroom with their peers, with support, if necessary. Our local school board (similar to American school districts) even has this as a policy statement:</span><br />
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<span style="font-family: Verdana,sans-serif;"><i>The Thames Valley District School Board believes most exceptional children should have their needs met, using a variety of strategies, techniques and resource support in regular classes in their home school.</i></span><br />
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<span style="font-family: Verdana,sans-serif;">I don't grasp this philosophy at all. Placement should be dictated by the needs of the student. For children with autism, it should be based on the child's ability to tolerate a regular classroom, how self-directed they are, their adaptive behaviour level, and most important, <b>their ability to do grade level work or benefit from social interaction with children close to their own age.</b></span><br />
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<span style="font-family: Verdana,sans-serif;">Some educators will simply say that grade level can have modified expectations and then a child can remain in a regular class. Some modifications might be appropriate, but not many. Take for example a class of grade one students who are learning about addition. If a child is in that class and does not understand how to count and the meaning of "more", "less", or "fewer", the whole concept of "modification" becomes meaningless. You can't teach addition without a basic mathematical foundation, and if you can't count, you'll find addition pretty hard.</span><br />
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<span style="font-family: Verdana,sans-serif;">Is the modification to teach the student to count while the rest of the class is learning how to add? If so, who is teaching the student how to count? If that is an EA, then why even bother have the student in the class if they are being taught different curriculum? Worse, if the teacher is expected to do this themselves, what is the child doing when the teacher is working with the majority of the class? The child is likely to become bored because the work is too hard and then we might see behaviours occurring.</span><i><span style="font-family: Verdana,sans-serif;"><b> </b></span></i><br />
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<span style="font-family: Verdana,sans-serif;">On the social level, I can see great benefit from a child with autism being with typical peers, but only if they are "close enough" socially to benefit. A six year old child who still can't play co-operatively is going to struggle... the typical children will play in a much more complex manner and probably use language that is too difficult for a child at this developmental level to follow or reciprocate.</span><br />
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<span style="font-family: Verdana,sans-serif;">This all seems like common sense to me. If a child is doing something different than the rest of the class then why bother put them in a regular class? Withdraw them to a proper segregated class with a very small teacher to student ratio where they can get individualized instruction with "inclusion" where appropriate (recess, gym, other activities where skill levels are appropriate). This will benefit the children in the mainstream class as well - they do not have to "slow down" for the special needs child, or have to tolerate behaviour that is being generated by frustration on the part of that child trying to learn.</span><br />
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<span style="font-family: Verdana,sans-serif;">The irony is that inclusion is a smokescreen for "ways to save money". It is cheaper to put a child in a regular class with as minimal EA support as the school can get away with versus a fully staffed special education class.</span><br />
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<span style="font-family: Verdana,sans-serif;">Sometimes exclusion is the fair and right thing for everyone. Pretending "inclusion" is fair for every child is nonsense. </span>AutisticWisdomhttp://www.blogger.com/profile/01553708099437502270noreply@blogger.com2tag:blogger.com,1999:blog-5609025654658864946.post-21520353041915793962011-11-10T17:18:00.000-08:002011-11-10T17:18:28.260-08:00Parental Social Isolation in Autism<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJsKRRHfLmPQP5Q59-CntaYSe4ieeILonpnIAkiEAr5KudJ7zEbs5NgfdmAUEvXtGRIr8oVR5OCPAdfcnWHsC-Yrl74Taa_bfnHOLRxKavtAI_5kjbi15pn-O2CU5Ns63yng6GPFip6OL9/s1600/isolation.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="231" nda="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJsKRRHfLmPQP5Q59-CntaYSe4ieeILonpnIAkiEAr5KudJ7zEbs5NgfdmAUEvXtGRIr8oVR5OCPAdfcnWHsC-Yrl74Taa_bfnHOLRxKavtAI_5kjbi15pn-O2CU5Ns63yng6GPFip6OL9/s320/isolation.jpg" width="320" /></a></div><br />
<span style="font-family: Verdana, sans-serif;">I'm going to go out on a limb here and post about something my wife and I talk about often but find difficult to share without offending others. In any life circumstance it is easy to feel like people around you don't "get" it. I suspect this is true of many situations... I can comfort someone dealing with cancer, but if I've never had cancer, or the specific type of cancer, or the specific unique circumstances of a person with a specific type of cancer, I may not "get" it.</span><br />
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<span style="font-family: Verdana;">Disclaimer: Some readers may find this post a big negative whine-fest... and it pretty much is. Sorry, you've been warned.</span><br />
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<span style="font-family: Verdana;">It is very easy as a parent to become socially isolated when you have a child on the spectrum. Mostly it has to do with people not really understanding your daily life. They may trivialize something or try to compare their own experiences with typically developing children in an effort to relate. In short, they don't "get" it, and trying to explain "it" becomes very difficult. So here is an effort to explain and see if it works. It may not. Another parent with a different experience may think I don't get it either. But I'll try anyway.</span><br />
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<span style="font-family: Verdana;"><em>Explanation #1: </em>Social outings are harder for us to manage - make the extra effort to make it easier for us and we will love you forever.</span><br />
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<span style="font-family: Verdana;">Everyone is busy. To be social one must be intentional. This is difficult with young children and even harder with a child on the spectrum. Here's why:</span><br />
<ul><li><span style="font-family: Verdana;">We're tired. Alanna doesn't sleep normally; she is often up for hours at a time. It is not an easy problem to solve... think I can give her Benadryl? Tried that, it made her hyper. This is a long story - if you have kids, think back to when you had a newborn. Now pretend that the period of not sleeping through the night lasts 8 years or longer and not 8 months. There you go, now you get it.</span></li>
<li><span style="font-family: Verdana;">Alanna doesn't really play with toys for long without prompting. That means we can't just go into a room with toys and sit and chat with other parents. We have to be intentional about planning activities she will engage in or be prepared to engage her ourselves. My typically developing two year old can play with a single toy for 20 minutes. Alanna will lose interest in less than a minute unless the toy gives her sensory reinforcement. Sorry, can't just sit and talk to you!</span></li>
<li><span style="font-family: Verdana;">Alanna likes other children but to engage the child in question has to be super persistent, and even then, it's not always a sure thing. Plus she can't talk and is only learning how to use her iPad. Three year olds can't understand a sentence strip with PECS on it. Sorry, I can't leave her with kids her own age and let them play!</span></li>
</ul><span style="font-family: Verdana;"><em>Explanation #2: </em>We really are doing the best to make her as independent as possible.</span><br />
<ul><li><span style="font-family: Verdana;">Since so little is known about what causes autism, everyone has an opinion. There are many "treatments" but very little evidence. Do not assume what you saw on a talk show last night has any basis in reality unless you see the research in peer-reviewed respectable journals.</span></li>
<li><span style="font-family: Verdana;">There is no known treatment that is guarantee to help every child. It does not exist. There is no silver bullet to cure autism. In other words, trying shiny-new-treatment X will probably not cure Alanna. It may help, but you are probably not an expert by reading an article, so don't pretend you are. You just make us feel bad because the insinuation is that we are not doing enough.</span></li>
<li><span style="font-family: Verdana;">Focus on the positive - recognize what Alanna can do and build on that. We are too busy focusing on what she can't do and don't need any reminders.</span></li>
</ul><span style="font-family: Verdana;"><em>Explanation #3: </em>Even the best intentioned family and friends can become overwhelmed quickly.</span><br />
<ul><li><span style="font-family: Verdana;">Even though Alanna is just turning four, she is becoming too much for most friends and family to care for because she needs a lot of attention. A weekend away means paying a respite worker, and that is likely to become more common as Alanna gets older.</span></li>
<li><span style="font-family: Verdana;">Very few people we know actually want to spend time with Alanna just to be with her. Some do for our sake, some do because we pay them to. It is hard to get excited spending time with a girl who doesn't talk to you and who may not reinforce you by interacting in the way you'd like. I get that, it's hard for us and we are her parents. It's not that people don't want to spend time with her, they just don't know what to do with her when they spend time with her. That is just reality.</span></li>
<li><span style="font-family: Verdana;">We try to be sympathetic when others express frustration with their kids but honestly, it's tough. We are sorry your child has wet their pants all day long, but in two weeks your child was toilet trained... at two years old. Alanna is almost four years old and we have taken her every 30 minutes to toilet for over two months. She is almost there but has accidents almost daily. Almost everything is harder for her to learn than a typical child.</span></li>
</ul><span style="font-family: Verdana;"><em>Explanation #4: </em>The future is scary.</span><br />
<ul><li><span style="font-family: Verdana;">We are often asked about how Alanna will "turn out". We don't know. We don't know if she will be able to talk beyond a few words or not. We don't know how independently she will be able to live.</span></li>
<li><span style="font-family: Verdana;">Based on her trajectory and based on research about outcomes, it's likely Alanna will be at least financially dependent on us for most of her life.</span></li>
<li><span style="font-family: Verdana;">Being unrealistic about her future is challenging for us - it reminds us how unlikely that future is. Yes, she may get married and have children but probably not, so it is better you don't bring up that topic.</span></li>
<li><span style="font-family: Verdana;">We are scared of what will happen to Alanna when we are gone and even more scared of any burden placed on her younger brother. Yet, there is no way to escape this reality, so we have to plan for it. It is prudent, not silly.</span></li>
</ul><span style="font-family: Verdana;"><em>Explanation #5: </em>Autism and Asperger's Syndrome are the not the same thing and autism is not a mild disorder... and other myths I've heard.</span><br />
<ul><li><span style="font-family: Verdana;">Children do not grow out of autism. They become adults with autism with the ability to cope with the world to varying degrees. Temple Grandin is an example of someone who is very successful at coping.</span></li>
<li><span style="font-family: Verdana;">Most people with autism are not savants and do not have some amazing skill they are good at.</span></li>
<li><span style="font-family: Verdana;">Autism is not just a social disorder. People with autism are not just socially awkward or different. You are describing mild Asperger's Syndrome.</span></li>
<li><span style="font-family: Verdana;">Autism does not imply intellectual disability. There is a high correlation but it is very difficult to measure intelligence in individuals with autism.</span></li>
<li><span style="font-family: Verdana;">People with autism have disordered senses and this is often an explanation of behaviour. They do not necessarily experience the world the same as you or I.</span></li>
</ul>AutisticWisdomhttp://www.blogger.com/profile/01553708099437502270noreply@blogger.com13