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If you’ve ever wondered why…

  • Posted on December 15, 2014 at 10:00 AM

If you’ve ever wondered why I’m not satisfied with my local disability services…

If you’ve ever wondered why I’m motivated to create a nonprofit organization that is committed to enrichment, employment, and empowerment…

If you’ve ever wondered why I’m convinced change is necessary to provide my kids and other people just like them with what they need to participate fully in our society…

If you’ve ever wondered why a little is just not enough…

I got a letter in the mail addressed to Alex. It concerns the county program that is supposed to help him transition from high school to adult life. It is the program that is, literally, intended to integrate him into the community of our county. Alex was “placed on the waiting list according to the date of your referral.” He is the 244th person on this list. This means in approximately 10 years he will begin to receive services.

He just turned 15, so he won’t receive integration services until he is 25. I’ve been told educational services expire when he turns 22. Now, it may be that I’m just bad at math, but those numbers don’t really work for me.

The worst part of all is, unless there are positive changes, the program isn’t really designed to meet Alex’s needs. It’s not designed to meet anyone’s needs. It offers a menu of choices. It provides services. Keep reading the new posts this week to gain a better understanding of the difference.

The Long Weekend

  • Posted on November 28, 2014 at 10:00 AM

Now that the holiday is out the way, the boys are eager to enjoy their long weekend. There was a time not so very long ago that the disruption such a change represents would be traumatic. I remember times when each boy (though never all at once) would begin any long weekend by getting ready for school, as best as he could, all by himself as a sign of defiance, if you will, against the change in schedule.

Sometimes that simply meant putting on his backpack. Other times it meant getting dressed, including snow pants, boots and a winter coat, all by himself. I would coax, explain, and coax some more. Finally, I’d leave him be until he gave up on school and decided to play. One time Alex went around in coat, shoes, and backpack until well into the afternoon. Every time the front door opened, he’d go see if his bus had finally come. Eventually, though, they always gave up.

Things are very different now. Even though children with autism do not follow the developmental trajectory of their typically developing peers, they do develop—at their own pace, in their own time, and most definitely in their own ways. Now, the boys enjoy the long weekend. They’re perfectly happy to play all day long. So, that’s what they’ll be doing today and for the next two days. Still, they’ll be happy to return to school and their normal routines until the Winter Break comes.

School-Year Anxiety

  • Posted on August 8, 2014 at 10:00 AM

After the muddled end of my last school year, I admit I’m anxious about starting up school again. I still haven’t quite gotten a handle on my fibromyalgia. My business is growing, but it’s growing primarily in a way that involves me doing more work to make it grow, as well as the work I need to do to provide for my family. I’m not up to a full day’s worth of work, quantity wise, even though it takes me a full day (or longer) to do it. I’m not sure how I’ll strike a balance between work and school once it starts, since both are priorities. There is so much that is unknown and I feel so unprepared, that there’s definitely an anxiety factor involved.

Willy, on the other hand, seems willfully unaware that school will start in less than a month. He will acknowledge it if I bring the issue up directly. He’ll discuss what concessions he’s willing to make with regards to new clothes, new school supplies, new shoes, and a new backpack. He’s willing to talk, briefly, about how he felt last year went. He won’t talk directly about his hopes and fears about the coming year. It’s difficult to weigh his anxiety levels, because he asserts a blasé attitude that seemingly belies his willfulness on the matter.

Alex, of course, is impossible to gauge. Honestly, I think getting back to the routine of school will be good for him. We have had something of a routine this summer, which has helped; but it’s a routine that spreads across the week, not over a single day, and it’s subject to far more change than the routines of school. This is not to say that he isn’t experiencing anxiety over the start of school. It’s more to say that it’s difficult to judge that anxiety relative to the buzz of anxiety he seems to feel most of the time. There are times when he’s completely free and, by noting those times and repeating the surrounding circumstances, we’ve even been able to increase them. However, the onset of anxiety is never so easily pinned to one cause or another, because he can experience both instantaneous and delayed reactions, depending on his processing during the moment. He seems to be handling the idea of returning to school well, but it’s hard to tell.

Ben is another matter. He seems genuinely unaware of the imminence of school. If I bring it up, his behavior reflects a belief that what I’m saying is not interesting, and therefore not worth attending to. This doesn’t necessarily suggest a blasé attitude similar to Will’s, because Ben’s hyper-focus can be very difficult to break through, even if you attempt to do so with something immediate, tangible, and desired. Ben has very much been “in his own world” this summer. He’ll zone into something desired and prolong it as long as possible. The easiest way to break him out of it (not that we do this on purpose or anything) is to give Alex the opportunity to do something he likes to do that annoys Ben. Ben will stop whatever he’s doing, wherever he’s doing it (as long as they’re both in the same house) and try to make Alex stop. If Ben cares one way or the other about the start of school, then he’s not saying so. I suspect he’ll care once he has to go back to focusing on tasks and timetables that other people set for him.

Of course, Mark is the stay-at-home parent who is not going to school, so the start of school means something different to him. I remember what that was like and, if he’s anything like me, he’s looking forward to the relief. After all, he’s borne the brunt of a difficult summer. He’s definitely ready for a break! And he definitely deserves it!

Time to Shop

  • Posted on August 6, 2014 at 10:00 AM

As those of you with school-age children will know, it’s time to do the before-school shopping, where you get all the school supplies the school says your child will need for the year, as well as a closet-full of new school clothes (if you can afford that sort of thing). In a household with children with autism, this ritual is modified. While the modifications depend entirely on the child, here are a few things that might occur:

  • Your child does NOT want new clothes—no matter how cool they happen to be. Even new socks and/or underwear can ramp up the before-school anxiety.
  • Your child does NOT want a new backpack—even if the old one is falling apart and held together with duct tape.
  • If your child MUST have a new backpack, then it MUST be the same style, size, and color as the backpack that is being replaced.
  • If your child MUST have new clothes, then the outfits should emphasize comfort and should not be stress-inducing or exciting; whether the clothes are “cool” or not may not matter to your child.
  • Your child may require a set of “school” supplies for home, as well as for school, because paper, pens, pencils and crayons are always welcome. Your child might “break into” his or her school supplies if a set of the most desirable items is not purchase for immediate, at-home use. This can also reduce anxiety about going back to school.
  • Your child does NOT want a new pair of shoes—even if his or her shoes are too small or have holes in the toes and in the soles.
  • If your child MUST have new clothes/shoes, then they should be as adaptable as possible, meaning that it is ill advised to get a new summer set and then, later, a new fall set. If possible, get a new set that will be adaptable until the next growth spurt, adding new items as the seasons change.
  • Your child may have absolutely no interest in going shopping with you; the added stress of shopping on top of the near-constant back-to-school stress may be too much for your child to bear. If your child says, “No” in any way, shape or form, honor that choice if at all possible.
  • If your child MUST go shopping with you, please respect your child enough not to drag him or her to multiple stores in pursuit of the best deals—the cost savings is not worth the stress this will cause your child. If possible, avoid peak shopping times.

For many children with autism, going back to school is stressful enough. For many children with autism, going shopping is stressful enough. Combining the two is a disaster waiting to happen. Please honor and respect your child’s needs during this stressful, anxiety-ridden time.

Making Doors

  • Posted on February 21, 2014 at 10:00 AM

As much effort as I intend to expend on changing the tract that Alex has been placed on, the long-term goal isn’t necessarily to “tract” him at all. You see, Alex has talent. Alex has had many disadvantages and has foregone the typical art instruction children receive in the United States for many years, yet he has an extraordinary interest and talent with visual arts.

These aren’t just the words of a proud mother. I know that I have little skill in assessing any form of visual art and even less aptitude in creating them. So, the best I could discern was to recognize that Alex’s art—indeed the art of all four of our boys—is better than anything I can produce, and to recognize (from the art training I have received) certain qualities that seemed rather remarkable. But, even to me, this didn’t mean much. So, I obtained the opinions of others who have more skill with assessing and creating visual arts. Turns out, I wasn’t wrong. In fact, the reactions I’ve gotten to Alex’s artwork (not to mention the other boys’) has been quite enthusiastic.

Now, as a professional writer, which is a form of art, I know how difficult it can be to make a career out of a talent and interest in a particular art form. Even when you have the advantages of encouragement, advanced schooling, and more or less “normal” interpersonal skills, advancing a career in the arts is a huge challenge. Many people try and more fail than succeed. The automatic conclusion is that it would be ridiculous to pursue such a path for Alex, because the odds are very much against him.

Yet, I also know that there are people with disabilities, even profound disabilities, who do pursue art as a career and do succeed in their endeavors. I also know that Alex experiences joy when creating his art and he experiences joy when sharing his art with others. Now, Alex experiences joy doing several different things—watching videos and swimming are prime examples. But art is one of the few things that he experiences joy when sharing it with others. This is significant in ways I can’t even articulate. If you get it, good; if not, well, then, I guess you’ll just have to take my word for it.

So, yes, the odds are long. Yes, it’s not something that will earn him a living right out of school. Yes, it’s something that will require special support just to make it possible. But it’s worth it. It’s worth pursuing. It’s worth it, because everybody deserves the opportunity to at least try to do what they love for a living.

So, you see, I’m not just looking for backdoors to open up a more acceptable tract for my son. I’m going to make the doors he needs to do what he loves.

Finding Backdoors

  • Posted on February 19, 2014 at 10:00 AM

I was doing research for my schoolwork when I found the current e-mail address and LinkedIn contact information of an old associate. Now, she is in a position of influence in the State of Wisconsin. I sent her a message, reminding her how I knew her, updating her about my experiences since we last met, and asking for her assistance. I was somewhat surprised when she replied almost immediate. We quickly struck up a correspondence about what’s going on here.

She told me she couldn’t help directly, but said, “I would start by filling out a DVR application once he is 15 or 16, and work directly with them if your school district is giving you problems. Also, contact the Transition Improvement Grant (TIG) coordinators directly for support. They work on a DPI grant, but are there to help school district improve around transition services. Everyone knows sheltered workshops are an outdated, bad practice and that today’s youth who have been included in school both expect and deserve more.”

Now, I have a set of tasks which I will use to open some backdoors that will, in turn, redirect Alex’s transition planning into a more productive, integrated direction. Sometimes the key isn’t knowing what to do, but knowing who to ask to find out what to do. As difficult as networking is for some of us and as difficult as it can be for others to ask for help, sometimes networking will be the difference between success and failure. And, when you’re talking about your child’s future, that difference is really the only thing that matters.

Opening Doors

  • Posted on February 17, 2014 at 10:00 AM

I’ve discovered a handy PDF file created by the State of Wisconsin called Opening Doors. This booklet helps parents, teachers, and students navigate the transition from high school to adult services in the State of Wisconsin, with the hope that the information will improve outcomes for students with disabilities. According to State Superintendent Dr. Tony Evers, “It is our mission to prepare Wisconsin’s students to become contributing members of their communities and the world by connecting youth to the resources necessary for a successful transition.” Funny, that’s the goal of most parents, too!

Unfortunately, it seems far too often we fail at this goal. Too many students are directed down paths proven to be isolating and disabling in nature. You see, people with disabilities have both abilities and disabilities. The training, encouragement, and support they receive are strong indicators of whether their abilities or disabilities will be the foremost forces shaping their lives. When we direct students down paths towards sheltered workshops, we are directing them to lives where their disabilities, not their abilities, shape their lives.

In renewing an old contact, I was advised, “DO NOT ACCEPT a sheltered workshop for your son. He will never make any money and will never leave. That’s very clear in the research and in practice statewide in WI.”

There are people trying very hard to change the way things are done in Wisconsin. Sheltered workshops and other disabling pathways are being diverted to make more pathways that provide students with disabilities with strong enabling forces in their lives, so their abilities, not their disabilities, can direct their lives.

Together, those of us who believe in the abilities of people with disabilities can change the way society chooses to provide for and support people with disabilities. Together, we can make sure abilities, not disabilities, are the dominating forces in their lives. No one person can make this change on their own, but together we can!