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Talker and Talking

  • Posted on January 21, 2015 at 10:00 AM

Alex gets it! He finally gets communication!

For years, Alex didn’t really understand how communication worked. Any communication that occurred was accidental. He would do or say something we could understand and interpret, and then he’d be rewarded with what he wanted or needed. But he had no apparent control over these bursts of communication.

After years of speech therapy, special education services, and intensive in-home behavioral therapy, Alex started to get the idea behind communication. Using pictures and PECS, voice output devices, hand over hand, and the occasional gesture, Alex started to communicate in a very basic fashion. Over time, he learned to show more specific wants and needs, like pulling out a food or drink he couldn’t open and setting it in front of someone who could open it. He would spell out key words using blocks or tiles with letters on them. He would even type in a few key words on a computer.

During these many years of slow progress, actual spoken words were rare. They occurred in those serendipitous moments when his frustration exceeded his tolerance without overwhelming his sensory processing abilities. During these rare moments, a word or a phrase would pop out of his mouth and we would understand. These brief successes were always a surprise—a blessing, but still not a product of controlled communication.

Now, finally, after years of trying, I have succeeded in providing Alex with a communication device. From my own perspective, this is “assisted communication,” in that Alex requires technology to access his ability to communicate. However, this is not “assisted communication” in the sense that we’re putting words in Alex’s mouth.

In an effort to teach Alex to use the device more thoroughly, we will find the words (and show him where they are) in order to say what we think he might want. Then, if it is indeed what Alex wants, he will tap the sentence and the device will say it. If it is not what Alex wants, he’ll erase it and enter in what he does want.

Alex is communicating! He communicates familiar expressions independently with his device. He communicates less familiar expressions with some adult assistance and support. He communicates and the device speaks for him!

But the wonder doesn’t stop there. Hearing the device speak what he wants or needs has helped Alex get communication so much more thoroughly than he has ever understood communication before. Not only is he using his device as a talker, he’s talking! He’ll listen to what the device says, and then he’ll say the keywords, too! He’s said more words in the last week that he’s said in the previous year!

With all the success Alex has been having with this device, we’re ready to proceed to the next step. We’re in the process of gathering as much data as possible, which the speech therapist at the clinic will use to begin the application process for a permanent device. She also said that it’s likely, since Alex is doing so well, that we will be able to borrow a device from the clinic, so that Alex can continue to access communication should the trial run out before the permanent device arrives.

Finally, finally, finally, Alex gets it!!! And we’re going to do everything in our power to make sure he can keep it!

On the Horizon: News About Me

  • Posted on January 14, 2015 at 10:00 AM

First, I have some very talented people helping me to create a professional website in my long-ago acquired online turf, www.StephanieAllenCrist.com. This transition will be very important to my changing business, but it will also impact my readers.

I’m still not sure how it’s all going to work, but essentially this blog is going to be ported to www.StephanieAllenCrist.com, merged with my other blog and with a new one, and organized by category: Writer, Advocate (that’s this one), and Marketer. Some of the old material will be dropped from the site (but not actual posts) and some new material will be available (more will be added as I’m able). In the end, it should be a wonderful website that has a lot more to offer, and is also easier for me to maintain.

This news leads directly into the next bit. I’m finally able to publishing Discovering Autism / Discovering Neurodiversity!!! Unless something changes dramatically in the next month, the e-book version will be available on Amazon and other retailers for immediate download, while the print version will be sold exclusively through, you guessed, www.StephanieAllenCrist.com.

After my memoir is published, I will also be publishing some shorter works. The details will be forthcoming when everything is a little closer to being ready to go. Meanwhile, I’m plugging away on the manifesto, which will be the next full-length book to follow the memoir.

Let the Communication Begin!

  • Posted on January 12, 2015 at 10:14 AM

Alex has his (trial) communication device!

It’s been a long road to get to this point and we’re still not all the way through this journey. Now that he has the trial device, we all have to learn how to use it effectively, including programming it and maintaining it. That’s step one.

Step two is learning how to record the data required to prove that this device is effective for Alex, thereby securing the funding for the permanent device. This begins on Wednesday.

Step three is actually gathering the data we need within the timeframe of the trial. I don’t think proving that this device works for Alex will be a problem in and of itself. He’s already successfully communicated several things using the device, both with assistance and independently. He’s communicated “go to grandma’s house,” first with assistance and then independently. He’s requested mac n’ cheese, quite adamantly. He’s also typed in a story for the device to tell him; rehashing an old Veggie Tales story. He also tried to get the device to sing the Veggie Tales theme song, but the device couldn’t properly interpret the “Veggie Taaaaaaaaaaaaaaaaaaaaaaaales” at the end. When I saw him do that, I couldn’t help but laugh and warn him, “That’s not going to work,” but he tried anyway and the device did try, but it did not succeed.

The tablet itself is Samsung technology, bound by a bright blue bumper. It’s got a strap attached, as well as a handle, though so far Alex doesn’t like the strap. The program within the tablet is called NovaChat 10. So far, the company has been very email-on, customer service oriented. Luckily, the speech therapist has been very good at responding to these e-mails, because I haven’t been.

We still have several months of weekly trips up to Madison ahead of us as we learn to use this device and as we secure the procurement of a permanent device. Wish us luck!

Disability Identification

  • Posted on January 9, 2015 at 10:00 AM

I’m reading Nothing About Us Without Us by James I. Charlton. One of the topics he covers is disability identification. As the argument is presented, one of the biggest challenges of the Disability Rights Movement (DRM) is getting people to both identify with their disability and their peers with disabilities and to feel empowered; because, dominant cultures assert that disability is weakness and inferiority.

As the mother of three children with disabilities, it was easy for me to reject the idea that my children were weak and inferior. I value my children as they are for who they are. It was easy to recognize that, yes, they have disabilities, but no, their disabilities don’t mean what the dominant culture says they mean. This is especially easy when confronted with the dominant culture’s willingness to see children like mine as disposable, where parents who murder their kids are the real victims. That makes it really, really easy for me to reject the dominant culture wholeheartedly, because I just can’t find it in my heart to sympathize with parents who kill their own kids, let alone empathize with them.

As a woman with a newly diagnosed disability, it’s a bit harder for me to reject the idea that I am weak and inferior while still acknowledging my disability. Really, the only thing I have going for me in that regard is that I was already primed to reject the dominant culture. When you’ve lost abilities that you once had, it’s hard not to see yourself as “less than” you were. I don’t have the same physical capacity I once had, but since I was never a very “physical” person, I can handle that. But I don’t have the same mental capacity I once had, either, and that’s much harder for me to cope with, because I was and am a very “mental” person.

I think a lot. I think when I work. I think when I “play.” I think instead of getting bored. I am a nearly endless source of my own “amusement.” I hate the fact that I lose track of my own thoughts. I hate the fact that I can’t remember things as readily as I used to. And I hate the fact that fatigue and cloudiness interferes with the way I want to live my life.

I can deal with the pain of fibromyalgia a lot easier than I can deal with the mental impact. There is part of me that sees that impact as making me less than I was. For that part of me, acknowledging my disability is acknowledging that I am less than I was. But there’s another part of me that knows that this struggle misses the point.

When people without disabilities regard people with disabilities as being “less than,” they’re not talking about being less able, they’re talking about being less human. The dominant culture treats people with disabilities as if they were less human, less valuable, less worthy of life, of rights, of support.

I am less able than I was, but I am no less human, no less valuable to my family or my clients, and no less worthy of my life, my rights, and the support of my fellow human beings.

This is simply true.

I could make it a matter of arrogance and point out that I was more able before my disability and that I am still more able than most of humanity with regards to the things that I value. I am still more able to handle three children with autism while respecting them and nurturing them into adulthood. I am still more able to write a damned fine piece, whether it’s a blog post or a web page or a book. I am still more able to create a loving, sustainable marriage with a partner with bi-polar disorder. I am still more able than anyone else to live my life.

That’s true, too; but, it’s not the point.

The point is that people with disabilities should feel free to identify as having a disability without shame and without being made to feel less human. The point is that people with disabilities should not be ashamed to associate and affiliate with other people with disabilities, or even with other people without disabilities. Humanity isn’t measured by degrees of ability. Humanity is an either/or option. Men are human. So are women. But gorillas aren’t. Dogs aren’t. And the fact that I can’t remember the right word(s) to describe the distinction doesn’t really matter either.

We are all human beings, regardless of our abilities and our disabilities, and we all matter.

 

 

(This is not to be construed to mean that we should be free to go around killing gorillas and dogs for fun, because they don’t matter. Animals matter, too. So do plants, for that matter. It’s just that, in my opinion, people matter more.)

(Now, I’m going to go ask my husband what the word(s) I can’t remember are, because it’s bugging me that I can’t remember. Apparently the words I couldn’t remember are binary distinction, but Mark doesn’t think it works, because there is more than one type of animal, so it’s not binary. But either/or and yes/no are binary, and that was the point I was making, so I’m going to stick with the thought that refused to be pinned down.)

Lost and Found

  • Posted on January 5, 2015 at 10:00 AM

Once upon a time, the boys had one Kindle. Then, they got two. Then, one broke and so we bought a Nabi, instead. Then, I got the one fixed on warranty, so I had a Kindle, too. Then, Ben lost the Nabi (we always assumed it was deliberate, because the Kindle was preferred because it has fewer restrictions). Whether it was deliberate or not, it was definitely too irresponsible for a $300 “toy,” so Mark put the Kindle up and the boys couldn’t have it back until the Nabi was found.

Months passed. Maybe a year. Maybe more.

Then, Ben’s room got a very thorough cleaning and the Nabi was found tucked under his carpet. Don’t ask how, because we don’t know.

Mark washed both devices, charged their batteries, and gave them to the boys. Now, they are happily using their devices, unless one is still charged when the other runs out of juice, and then they are “happily” fighting over the device that still works.

So a new year begins!

Merry Christmas!

  • Posted on December 24, 2014 at 10:00 AM

Our Christmas celebration is a three-fold event.

It starts with the “Cristmas party,” during which Mark and I bring the boys and, usually, my Mom to the Crist family Christmas party. Over the years this event has been transformed to better meet the needs of the boys. It used to happen in a restaurant or another barely-tolerable venue with too much stimuli and too many avenues for escape. Since then, it has been held either in a family home or in a hotel conference room. This year the conference room had a big screen TV. There was no input to display, but Alex still enjoyed jumping to the image of his own shadowy reflection. Both Alex and Willy got birthday presents, as well as Christmas presents, which makes it especially fun for them. Unfortunately, Ben was sick, which became apparent after the party was over (at least, it was over for us). Luckily, we were outside at the time. The real blessing, though, was that Brandon was able to come with us. (Prayers for him would be appreciated as he stares high school graduation in the face without a plan for what happens next.)

Tonight, we’ll celebrate Christmas Eve with a “Christmas dinner” over at my Mom’s house. Afterwards, we’ll exchange presents. This is a smaller, quieter affair where the noisiest things in the house are definitely my boys. Unfortunately, it looks like Brandon will be working that day.

Finally, there’s Christmas morning. This time it’s just us in our own home. The boys get their presents, even if I have to stay up all night wrapping them and setting up our little fake tree. Sadly, the white one with the LED lights at the tips has gone missing, so this year we’ll have a fake fir and whatever ornaments and candy canes I might happen to have on hand.

I guess my point is that I would like to wish you all a merry Christmas and urge you to make your Christmas/holiday celebration(s) autism-friendly affairs your whole family can really enjoy. All it takes is a little accommodation! Merry Christmas!

Why Must There Be Two?

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

I’m not sure if I’ve revealed the specifics yet, but I know I’ve reported my intention to start a nonprofit organization. In fact, I intend to start two from the very start. So, why, you might ask, must there be two?

The goal of both nonprofit organizations is to seriously improve the quality of life available to and experienced by people with neurological disabilities and/or differences, regardless of the severity of those disabilities and differences.

In order to do this, you have to proactively address two different spheres of influence: advocacy and service delivery.

On the one hand, you must work at the (inter)national level. You must raise understanding, awareness, and acceptance. You must advocate change. You must influence society. You must influence legislation. And you must cooperate with other disability organizations to accomplish all of this. This is the advocacy sphere.

On the other hand, you must work at the local level. You must provide opportunities for enrichment (building daily living skills, building social skills, building work skills, building household management skills, building business management skills, etc.) that meet the specific needs and goals of each individual. You must provide opportunities for employment (career planning, job hunting, business start-up, seed money, and job or business maintenance) that meet the specific needs and goals of each individual. You must also provide opportunities for empowerment (self-advocacy skills, issue advocacy skills, opportunities to advocate in the community, opportunities to advocate at home or with family, opportunities to advocate in the workplace, opportunities to advocate at the regional, national, or international levels) that meet the specific needs and goals of each individual. And you absolutely must have a way to navigate the various programs, services, and opportunities that are available in the local community so that the needs of each individual can be met and their goals can be achieved in a cost effective manner so the maximum number of people can be served with the resources available while still meeting quality standards. This is the service delivery sphere.

If you put these two spheres of activity together under the same organization, you’ll get an ineffective, inefficient organization. If, on the other hand, you have both spheres linked but separate, you can produce a powerful, driven set of organizations that meet the complex needs of people with neurological disabilities/differences in both areas that matter most. The (inter)national organization will actively advocate at the topmost levels of society; the local organization(s) will actively deliver the individualized services that are most desperately needed by people with neurological disabilities/differences. There will, of course, be overlap by design: the national organization will “seed” the local organizations, develop appropriate policies, and distribute the capital necessary to “plant” the organizations, while also holding functional local organizations to the conduct standards set in the organization’s charter; the local organizations will “feed” issues and problems to the national organization, which the national organization is responsible for addressing as the advocacy organization, and they will also develop the skills and provide the opportunities for volunteers/employees to move from the local to the national level.

I’ve been around enough to know that the way things are done for people in need—in the U.S. at least—has a tendency to function in such a way that creates dependence without really solving problems. A set of services are provided and people who need help can choose among the options that are available. If enough people have unmet needs after those selections are made, then a new service is created to meet those needs. But people aren’t individuals. Decisions are driven by statistics, metrics, and policy goals. The idea isn’t to help people; the idea is to help demographics. The result is that people aren’t really helped in a way that satisfies their needs, facilitates their goals, or solves their problems. This occurs, in part, because these decisions are made far away from the people who are actually in need, by policy makers operating at the national and state levels.

My goal is therefore two-fold. Create a system and processes that work by actually working with individuals with neurological disabilities and differences. The system and processes will be flexible enough to be individualized, but also knowledgeable enough to leverage available resources to provide as help as much as possible, yet independent enough to fill in the gaps as needed. This will transform the quality of life for the people I understand best and am most passionate about; yet, it will also create a model that can be used by other organizations (the national organization would facilitate this) in order to truly meet the needs of populations that my program is not designed to address.

Usually this kind of holistic solution-oriented service delivery is restricted to select localities. A few local areas work together to solve problems. These solutions become case studies that are offered to other communities. The process is replicated, though the same results are not always achieved because the solution-oriented spirit of the process is gutted from the service delivery design. My hope is that by combining the local impact with the national reach, I can change this. So, there has to be two organizations, inextricably linked, but independently functioning. There must be two.

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.

Happy Thanksgiving!

  • Posted on November 26, 2014 at 10:00 AM

Raising three children with autism can be quite challenging. Celebrating holidays with three children with autism—or even just one!—can be especially challenging. Over the years, our extended family has grown accustomed to the differences my children’s needs bring to the holiday season. Our family has adapted excellently and I know just how lucky we are for their support and accommodations.

Many families are not so lucky. Many families struggle with basic necessities and holidays can be especially trying. On the one hand, the expectation is that they must somehow access the mainstay traditions of the season, such as a turkey for Thanksgiving, whether their budgets allow it or not. I’ve been there and I know how trying and miserable that can be. On the other hand, parents can go through all the work to procure the ingredients and make the feast, only to find that their child(ren) with autism won’t touch the holiday meal. Instead, they want something that’s more familiar and comfortable. I’ve been there, too.

When spending the holidays with extended family, these complications can be further exacerbated. Grandparents, aunts, uncles, and cousins can do their best to love the children with disabilities in their family, but if they don’t understand the disability the child has and they don’t understand what the child needs to celebrate the holiday, it can spoil the event for everybody. I’ve been there, too; though, once again, I’m lucky to have an extended family that’s very understanding and accommodating, but it has taken work on all our parts to get there. It is important for everybody to understand and keep in mind that it is not the disability, per se, that spoils a family event; it is the lack of understanding and accommodation that makes the event unsuccessful. That seems to happen in families a lot, and the issue isn’t always a matter of disability, but I’ve found that if people are willing to put in the work to love, understand, and accept one another, then any event can be a success, whether you have little or much.

So, I want to express my gratitude that Willy will be joining my mom, my husband, and me for a traditional Thanksgiving dinner. And I want to express my gratitude that Alex and Ben will be able to enjoy the special family time of Thanksgiving without having to try any of the traditional foods. I’m thankful we have the choice and flexibility to ensure that our whole family can enjoy this holiday. And I’m especially thankful for the many holidays we have shared with our understanding and accommodating extended family.

Thank you all!

A Good Day

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

I am still in the midst of illness and hardship, but recently there was a bright spot in this time of tribulation. Alex had a very good day on Wednesday. It started with a check-up with his pediatrician. For the first time, Alex sat still while the nurse took his blood pressure and his pulse. When the doctor came in, Alex let him look in his ears and his mouth without any problems and without requiring any special maneuvers on the part of his doctor. Then, when the nurse came in to give Alex his vaccinations, Alex only needed help staying still enough for the needle. He endured not one but three shots without any kind of fuss.

After such excellent behavior, Mark and I wanted to give Alex a treat. We discussed the possibilities and decided to take Alex to IHOP, because there are three different meals he likes there and the menu is one he can consistently use to make his own choices. He chose a grilled cheese sandwich, and I requested fries instead of fruit. Alex ate his entire sandwich and all his fries!

After that, he had some free time at home before I took him to the speech clinic. When we got there, the speech therapist had a new selection of toys so they could explore different areas of the device. Alex was surprisingly cooperative and attentive. He didn’t lose focus until the very end and he used the device beautifully.

When we returned home, he continued his fabulous day without any significantly disruptive behaviors. (We have also heard that Alex is now proactively extending his hand in greeting and, at home, he’s watching Willy and his friend play together as if he’s trying to figure out how they do it.) While this stellar behavior didn’t roll over into Thursday, I did get another, stronger dose of antibiotics. Unfortunately, my mother required a trip to Urgent Care and was diagnosed with vertigo, which took up all my energy for the day.