The Denver Autism Wheel

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PatienceI recently got a question about feeling feel less patient than one would admit to, and I thought it deserved some attention. What do you do when your patience runs out? As the parent of a child with special needs, it has been my privilege to grow as a patient person, not just because I was the mother of a toddler, but because he didn’t speak until he was four, couldn’t eat solid food until he was 28 months, didn’t potty train until his younger brother started showing him up. In other words, I became more patient when I started to realize we weren’t on my schedule anymore.

A wise Tweet once said “worry is imagination aimed in the wrong direction.” I believe patience and imagination work together. It is our ability to imagine the positive outcome which allows us to be patient. And it is our ability to worry about the negative outcome which makes us impatient.

So here are some tips to encourage imagination and grow in patience, which worked for this mom in the trenches.

Be realistic. Chris was my first child, so he didn’t have any competition when it came to toilet training. I was at home with him, so there wasn’t a daycare pushing him. He got to it when he was good and ready. And that’s not a bad thing. Evidence now indicates that toilet training a child before he or she is ready can lead to other problems down the road. Yes, it’s expensive to keep buying training pants and night-time diapers for a large toddler, but rushing training only increases his or her anxiety about other things later on. As I mentioned, you’re not on your own schedule anymore. It’s OK to wait.

Imagine the worst possible outcome and make peace with it. Really, it all comes down to the way you look at it. When it came to solid foods, Chris couldn’t keep them in his mouth without gagging. Anything with texture would trigger his gag reflex. So there he was, going on 2 and a half years old, still eating baby food. Worst-case scenario? He’s in high school, drinking strained peas from a Thermos. Looking at it a different way, that sounds like a smoothie. So he drinks a lot of smoothies… Another scenario, riffing on toilet training again. Worst-case scenario? He’s off to his senior prom, wearing adult diapers. Looking at it another way, there are plenty of adults who wear them because of bladder conditions, traumatic injury…who knows except the individual with the condition? So even if that was the worst case, it’s not THAT bad. So face the worst case. Chances are good that the absolute worst-case scenario isn’t going to happen. If you can get OK with the worst-case, and the actual outcome is not the worst imaginable, you’re over that hump, and it’s a relief.

Have a good, private, cry when you are really sad. Being tired and frustrated wears everybody down, but understand that you can let it out, in a private space (like in your car, parked in the garage or outside where your kids won’t see you losing your mind). It’s human to experience a wide range of emotions. You don’t have to be happy-happy all the time. That’s a little twisted. But you don’t have to drown in stifled unhappiness, either. You’ll end up reacting badly, taking out your frustration on people who don’t deserve it. Then you’ll have that to deal with, too. Having a good cry is actually a normal and healthy way of letting that emotion vent a little. Crying can make you feel better (thinking about it just now, sobbing forces you to take deep breaths, which helps calm you). This is important, though: don’t let your children feel they are the reason their parent is sobbing uncontrollably…that’s scary and sad for anybody, particularly little kids.

Reward success (this includes rewarding yourself). I can’t tell you how happy I was when we went through our first “dry night.” We had a nice treat that day. I believe we had spaghetti for dinner and marshmallows for dessert (Chris has been a hollow leg ever since he got past the solid food problem–which he did get past at about 28 months, BTW). We didn’t go nuts or anything, but we did celebrate. Give yourself a treat, too: what do you like? Ice cream, manicure, book? Doesn’t have to be extravagant, but it should be meaningful, from you, to you.

Recognize your child’s successes for what they are: a unique individual’s growth and progress. Sometimes progress just sorta comes; sometimes it takes determination, repeated failure and persistence. Always believe your child can do what he or she sets out to do. Your confidence is their buoy. If you think they can, they’re more likely to think so, too.

Never, ever compare children. It isn’t fair to anybody in the picture. It’s tempting to compare children of similar age, or even siblings because they’re family. But it isn’t fair, particularly if you know you are raising a special needs child. There may be things that child will just never be able to do. It doesn’t mean you give up and stop trying to improve your child’s life. But it might require some creative thinking, collaboration with other parents or professionals who might have ideas, tools or techniques to work around what your child cannot do. And keep in mind: there are other things that the same child is brilliant at. Celebrate the brilliant.

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Hello, everybody! I have had a few requests to repost this article, so here it is. We’re a little over halfway through sixth grade at this update, and Chris seems to be settling in to middle school after a bumpy start and a whole lot of hardworking people (especially him) making a huge effort to make this work.

So here’s the repost, without further ado…

So we’re getting ready to make the transition to middle school next fall. If you’re reading outside our immediate South Metro Denver area, elementary school is K-5 here, middle school is 6-8 and high school 9-12. So there’s a big shift on the way next year, and I started figuring out where we were going early, so we were able to throw the dart with confidence in January, after Winter Break. Here’s what I looked at for middle school.

I wanted a school that was big on integrated classrooms. The school we chose has a wide mix of typicals and SpEds in the classroom. If a student needs para support, they fade the adult as much as possible because they get it that “it’s not cool for a kid to hang out with a grown-up all day.” They try to mainstream kids as much as possible, so you don’t end up with a room full of SpEd and a room full of typical. I prefer it that way for several reasons: I don’t want the SpEd kids to stick out (more than they would ordinarily) because the typical kids don’t see them much during the day, and I don’t want him to lose contact with the typical kids who will be going to school with him from his elementary school.

I wanted a place that would help him shine at what he likes. There’s only so much any kid can stand not being remarkable. Everybody is awesome at something. Chris happens to be good at building stuff, and the middle school we picked has both wood and metal shop along with computer-aided drafting and animation. Cool.

I also wanted to pick a school Luke could move into. We ended up going with our neighborhood middle school, so Luke will have classmates there as well.

And we wanted to keep the great relationship we’ve been building with the District. So I spent some time talking to principals and SpEd staff, visiting the schools and taking a tour (far more tailored information than the “prospective parent night” session, and the staff are very nice and willing to walk around campus and talk up their schools).

So, it will be a big transition. But we’re starting off right, I think, with a lot of communication, a lot of advice, a lot of listening. We’ll start bringing Chris to these meetings soon, so he can start getting a handle on lockers and passing periods and homeroom and whatnot. But it’s a start.

It’s a pet project of mine to learn more about the creative writing process (I’ve been a journalist, a blogger and a technical writer many years, but I have not tried my hand at fiction), so I got a book on writing believable characters based on personality profiles, and amongst them, I found a profile for a person with autism and nearly swallowed my gum when I read some of the assumptions (the book was written by a writer who is also a psychologist, BTW).
Now, before I elaborate on these assumptions, it is worth noting that the copy of the book I have was published in 1999. This was the year before Chris was born, and I say with some pride that a lot has changed in that time, regarding theories of parenting children with autism, psychological approaches to autism and our medical and scientific understanding of what it means to live with autism in a predominantly neurotypical world. However, there is a long history of research into autism which has confused the lack of ability to communicate effectively with the lack of desire to communicate effectively. These are historical misunderstandings about autism, and history is tough competition.
Assumption 1: the person with autism dislikes social rules, behaves disobediently and defiantly. It has long been my experience that it is quite the reverse. Individuals with autism appreciate social rules and try very, very hard to follow them. Rules make unpredictable social moments more predictable. And it’s that effort to adhere to social rules that often makes teens with autism the target of abuse and bullying because they don’t know that their peers expect them to follow adolescent rules that dictate they defy the adult rules. My retake on the assumption is this: the person with autism relies on social rules to help establish context but can behave unexpectedly if the rules he understands come into conflict with one another.
Assumption 2: the person with autism is not deterred by fear. Studies have established that a staggering majority (over 80%) of adolescents with autism also suffer from anxiety and/or depression. A lot of the anxiety I’ve seen 12 year old Chris display has to do with misunderstanding context or nonverbal cues. He has always hated attracting negative attention to himself, and that includes becoming a spectacle because he’s having a tantrum. It’s humiliating to him to lose control of his emotions in front of others. So again, it is my experience that the standard is actually the opposite of the assumption: the person with autism is routinely deterred from expressing himself or engaging with others because of fear.
Assumption 3: the person with autism is mistrusting and untrustworthy; lies. Chris does not lie. There are really good reasons for it. 1) Lying is breaking social rules, 2) Lying requires an understanding of what makes a plausible lie, and he lacks that skill (he tries to lie sometimes, and it’s completely apparent that he doesn’t know how to make a lie work), 3) Lying does not make logical sense; it requires a moral flexibility that is way too much work to be practical for him. And as for trust, he has to trust people to be honest and kind to him. It takes an act of deep betrayal to teach him not to trust a person, and most people don’t have the heart to do that to him. So, again, the observation that belies (hee hee) the assumption, is this: the person with autism is genuine, trusting others even to his own harm.
Of course, it was telling to read this profile, offered by a mental health professional over a decade ago. Keep these facts in mind:

  1. 1 in 88 children is affected by autism
  2. Boys are 4 to 5 times more likely to be affected
  3. If you know 7 people, the odds are that one of them is personally connected to autism

Part of the revelation to me was that these assumptions might still sound reasonable to the other 6 people who aren’t personally connected to autism. Considering the coverage of a recent school shooting, where reporters bandied the idea autism was a contributing factor, misinformation still abounds. Fortunately, our community of self-advocates, parents, providers and educators stepped up to dispel those myths. Individuals with autism are far more likely to be the victims of premeditated acts of violence than the perpetrators. Period. One of the reasons I keep writing and posting and acting as an advocate for Chris is to try to change these mistaken assumptions. We are all on a similar path, and the more we are able to reach out to others, the greater our understanding.

So we’re getting ready to make the transition to middle school next fall. If you’re reading outside our immediate South Metro Denver area, elementary school is K-5 here, middle school is 6-8 and high school 9-12. So there’s a big shift on the way next year, and I started figuring out where we were going early, so we were able to throw the dart with confidence in January, after Winter Break. Here’s what I looked at for middle school.

I wanted a school that was big on integrated classrooms. The school we chose has a wide mix of typicals and SpEds in the classroom. If a student needs para support, they fade the adult as much as possible because they get it that “it’s not cool for a kid to hang out with a grown-up all day.” They try to mainstream kids as much as possible, so you don’t end up with a room full of SpEd and a room full of typical. I prefer it that way for several reasons: I don’t want the SpEd kids to stick out (more than they would ordinarily) because the typical kids don’t see them much during the day, and I don’t want him to lose contact with the typical kids who will be going to school with him from his elementary school.

I wanted a place that would help him shine at what he likes. There’s only so much any kid can stand not being remarkable. Everybody is awesome at something. Chris happens to be good at building stuff, and the middle school we picked has both wood and metal shop along with computer-aided drafting and animation. Cool.

I also wanted to pick a school Luke could move into. We ended up going with our neighborhood middle school, so Luke will have classmates there as well.

And we wanted to keep the great relationship we’ve been building with the District. So I spent some time talking to principals and SpEd staff, visiting the schools and taking a tour (far more tailored information than the “prospective parent night” session, and the staff are very nice and willing to walk around campus and talk up their schools).

So, it will be a big transition. But we’re starting off right, I think, with a lot of communication, a lot of advice, a lot of listening. We’ll start bringing Chris to these meetings soon, so he can start getting a handle on lockers and passing periods and homeroom and whatnot. But it’s a start.

Hi everybody! I haven’t posted in about a week. Sorry about that, but I have an autie who’s turning 10 in just a coupla, so been pretty occupied with that. Here’s a link to some helpful holiday tips while I do the birthday thing. Back soon. In the meantime, if you have ideas or things that work for your family over the holidays, birthdays and other reasons to celebrate, leave a comment and share with the community.

Ways to help children with autism manage the holidays

In this blog post, autism advocate and writer Laura Shumaker offers eight tips to help families and children affected by autism survive the holiday season. Being careful not to overstimulate children’s senses with decorations or too many toys, and being prepared for meltdowns by soliciting extra help and arranging for separate transportation are among Shumaker’s suggestions. http://www.sfgate.com/cgi-bin/blogs/lshumaker/detail?entry_id=77993


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