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Caught Off Guard

  • Posted on January 23, 2015 at 10:00 AM

Will and I had a meeting with his guidance counselor last week. We talked about what Will wants for his future, what we were doing about it, and what else we could do about it. As you may recall, Will wants to be a video game designer. So, I told the counselor that, as far as electives were concerned, we were focusing on art and computer classes.

She gave us some great news! Next year, Will can take graphic design and game design (a new class!) for the full year! I found that very exciting and Will was psyched, too. But, while we were still talking along this vein, Will dropped a bomb on me.

“I also need to learn to speak Japanese, because I’ll need to speak Japanese when I work for Nintendo Tokyo.”

I sat in stunned silence. We’ve talked before about how Nintendo is a Japanese company. We’ve talked about how, to work for Nintendo, he’d have to learn Japanese and he’d have to move across the world. Never once did he say, “I want to do that!”

Now, it’s not that I don’t want to encourage my son to pursue his dreams. I do that every chance I get! Nor is it that I think, just because I’m his mother, that I have a right to dictate what those dreams should and should not be. I honestly don’t.

But, honestly, I am a mom!!! You don’t suddenly drop this kind of bomb on me when I’m in a meeting with someone we’ve just met. Give me time to process the idea! I mean, it’s Japan!!!

Now, to be fair, there’s absolutely nothing wrong with Japan…except that it’s almost the exact opposite of us on a globe. A small thing, really, until it’s to scale. Of all the reasons I can think of why this is a bad idea, mostly it comes down to this: It’s too far away for me!!!

I am getting used to the idea. I’ve done a good job resisting the temptation to talk him out of it. I haven’t even brought it up (to him), because I know I would try to talk him out of it. But it’s a struggle. New York City? Fine. L.A.? Fine. But Tokyo? I’m not ready for that!

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.

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!

Happy 2015!

  • Posted on December 31, 2014 at 11:59 PM

Reflecting back on 2014, it would easy to get hung up on how it was a “bad year” for me and for my family, because the first few months were difficult and the last few months have been especially difficult. But the truth is that I earned more money this year than I did last year. I finished writing my memoir. I made some really great new friendships and business relationships. My boys have been, more often than not, healthy and happy. So, while there were some extra-lengthy rough patches in 2014, I’m satisfied that we have done the best we could with what we were given and that we used what control we had, however limited it seemed, well enough to make progress this last year.

Now, as I look ahead to the coming year, there are several things I expect out of 2015. For myself, I expect to publish my memoir, several smaller works, and (hopefully) a novel. I expect to grow both my business and my advocacy platform as well. I expect to become healthier, more balanced, and more joyful. Finally, I expect to be able to help others more.

For Brandon, I expect a happy high school graduation. I expect him to discover more of what he wants to do after graduation. I expect him to start setting and realizing plans with which he can build the future he desires for himself.

For Willy, I expect him to explore his interests in greater detail. Instead of passively watching videos and playing games, I intend to encourage him to begin learning to create them. (I also intend to provide him with the tools necessary to do so.) I expect him to grow and mature and to take greater charge of his own life. I hope he can make another friend to bring home, too.

For Alex, I expect him to learn to use the new communication device he’ll be receiving shortly. I expect the trend of communication to continue to grow exponentially, including using more words like the very clear and appropriate “water” he just said. I expect him to use this new ability to share more of himself with us and others.

For Ben, I expect him to better regulate himself so that he can use his interests and energy in kind and productive ways. I expect him to grow in his communication abilities so that he can use words to express his preferences clearly. I hope to hear him answer the question “why” a few times, too.

Mark is always a tough one. I continue to hope that he will find ways to become more motivated and involved outside the Facebook/Twitter communities.

And I hope we all do better at appreciating and exploring the social opportunities available to us! As for the world, sadly I think it’s too much to hope for peace. Instead, I will hope for more moderation and fewer extremes in our national and international discourses.

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 Dreamer and the Rock

  • Posted on December 12, 2014 at 10:00 AM

When my husband and I first got married, I was the dreamer. I intended to stay home with our children and write. He was the rock. He knew, more or less, how the world operated. He knew how to work for a living. He knew how to provide for a family.

Our roles were very traditional. A throw-back, really, to a different time and place. The man as the breadwinner is a quaint notion. In contemporary times, you either need a breadwinner who is exceptionally good at providing or you need two breadwinners to provide for a family. And that’s just to attain a middle class living.

My husband was never that man. As a provider, he could eke us just over the edge of poverty. As a family, we’ve never been homeless. As a family, we’ve never been anywhere near starvation. But we have had our electricity shut off. We’ve had our phone shut off. We’ve had more cupboards that were bare than were full. We’ve had problems that money could solve that we couldn’t solve because we didn’t have the money. We’ve been on food stamps and we’ve been on heat assistance and we’ve accepted a lot of help from our families.

Over seven years ago, we made a choice. We knew that, working the jobs he could get in the place we wanted to live, Mark wasn’t ever going to be able to lift us as far above poverty as we wanted to be. We were urged to become a two-income household “like everybody else,” but instead we switched.

Mark became the stay at home Dad. I went to college. I graduated. I started a business. I went to grad school. I started my first book (sort of, but that’s a long story). I graduated. I revved up my business. I started another grad school program. I finished my first book.

There’s times when I feel like a failure because I’m still a far cry from getting us to where I want us to be, but Mark is the first to remind me how much progress we’ve made. The last several months—perhaps a year—I’ve managed to keep our cupboards stocked, our lights on, our phone working. We haven’t been on food stamps for years now. We don’t qualify for heat assistance this year either. We still get medical assistance and SSI, but those have a much higher margin (for good reason). The boys receive reduced lunches, but are no longer eligible for free lunches. I was able to pay for the boys’ school supplies this year and even get them much-needed new clothes and shoes.

Now, I’m the rock. I support my family. My earnings make the difference between making ends and being out of everything before the end of the month. The dreamer isn’t dead. I still envision bigger and better things in the months and years to come. But I am the rock even now.

These last few months have taught me how precarious my position is. Everything relies on me. When I’m unwell, when I’m unproductive, there’s too little cushion. I’m the rock, but it’s like I’m one of those bizarre rocks on the precipice with what seems to be pebbles and gravel holding me in place. You know that story earlier this year (I think) of the guy who knocked one of these monumental rocks down because he considered it a hazard and got in trouble for it—I’m one of those rocks. And it’s not nearly as cool as it sounds.

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.

Ownership vs. Stewardship

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

In the United States, we have a culture that perpetuates an ownership mentality. We own a lot of stuff, we own our land, we own our rights, and according to some people we even own our jobs. With ownership comes a sense of entitlement: we have the final say, we make the decisions, we can use what we own however we want. We have many rights, but we recognize few responsibilities. The world owes us a lot, but we don’t owe anyone anything.

In contrast, quite few of the cultures we interact with practice a stewardship mentality. The stewardship mentality generally takes the longer view. According to this perspective, we don’t own much of anything, regardless of property laws, because these things will last longer than we will. This is particularly important with regards to land usage and community. The stewardship mentality recognizes fewer rights and many more responsibilities. Namely, as stewards, we have the responsibility to take care of—not simply use and certainly not use up—our property.

As I’ve said, I’ve been reading First Things First by Stephen Covey and the Merrills, and the issue of stewardship was brought up regarding the roles we choose. Then, after reading this, I watched a news clip about a child that was accidentally vaccinated by the school. In this clip, one of the guest speakers—I don’t remember who—was talking about how parents have the right to decide when and if a child is vaccinated. On the surface, I agreed with her. Personally, I don’t think schools should be vaccinated children at all—it blurs the lines of governmental authority too much for my taste. But, as I listened to her, I couldn’t help but hear the ring of ownership in her voice as spoke about parenting her child.

This isn’t atypical in the United States. Among the many things our culture tells us we own, we’re told we own our kids. This idea has been with us since the founding of our nation and it lingers to this day, though we have made inroads in recognizing our children as people with human rights of their own.

For centuries, parents enjoyed the right to treat their children however they saw fit. Slowly, over time, the rights of parents have eroded. Once upon a time, parents could decide whether or not their children worked or went to school. Then, school attendance became more or less mandatory. Once upon a time, parents could decide how their children were punished. Then, certain forms of punishment were labeled abuse and outlawed. Once upon a time, parents could decide whether or not their children were vaccinated. Then, vaccinations became more or less mandatory. Once upon a time, parents could decide whether or not their children received medical attention. Then, medical care became more or less mandatory.

While there is a part of me that resists the encroachment of government on individual rights, mostly I agree with these shifts, because I firmly believe that children are people with rights of their own. (Though, I can’t help but comment that it seems ironic that as our “old” rights are being eroded, we now have the “new” right to kill our children via abortion, a mentality that I suspect also leads to tragedies like this.)

When it comes to our children, our rights as parents cannot and should not outweigh our responsibilities to our children. This is stewardship, not ownership. We have the right to make decisions, but we have the responsibility to consider our children’s interests when making those decisions. We have the right to direct the courses of their young lives, but we have the responsibility to raise them into people who can choose their own paths. We have the right to resist social and even legal/governmental norms, but we have the responsibility to base our resistance on the best interests of our children and not on our own convenience.

In the name of cultural diversity, we learn about other cultures and we are exposed to how those cultures are mixing with the dominant American culture. As a child, I learned a great deal about Dia de Muertos in the name of cultural diversity. I’ve acquired a smattering of other cultural nuances from my classroom instruction, too. But it wasn’t in school that I learned about the truly substantial differences in culture. It wasn’t in school that I learned the difference between Native American and dominant American attitudes towards land. It wasn’t in school that I learned the pervasive significance of “ancestor worship” traditions among Asian cultures. It wasn’t in school that I learned that there are people whose views of the world are so completely and utterly different from our own that we cannot help but miscommunicate and misunderstand each other. What I learned in school in the name of cultural diversity was decidedly trivial, so as to not even open up the opportunity for us lowly students to challenge the norms of the dominant culture.

As much as I love this country (most of the time), there are things we need to learn from others, and it’s not simply to respect holidays that are different from our own. In grade school, I learned that America takes pride in being the melting pot of so many different peoples. In college, I learned that America could more accurately be described as a salad, because we all don’t end up with the same culture or the same world views and belief systems once we’re mixed together. The irony, which I didn’t learn in school, is that “America” is itself an arrogant misnomer. Canada and Mexico are part of “America,” too. So is the entirety of South America. We may be the United States of America, but “America” is not our own to claim. But the dominant culture does not want to be challenged. People en masse don’t want their minds to be opened to ideas that make them question themselves and their beliefs. We don’t want to learn the truly important things.

The United States has the potential to be that melting pot of yore. But it is not done by making everyone who comes here melt into some longstanding norm. We’ve already figured out that that really doesn’t work—thus, we say “salad” instead “melting pot.” But the melting pot ideal isn’t, by itself, wrong. We have the potential to take the best of the cultures of the world and to melt these “bests” into something truly exceptional, something truly ideal. What if we could combine the Protestant work ethic with the longer, sustainable view of land held by Native American cultures? What if we could honor our history while working cooperatively for a better future? What if we could balance freedom with responsibility, liberty with equality, self-determination with self-restraint?

What if we treated our children with the respect, dignity, and humility they deserve from us? What if we raised our children to balance their rights with their responsibilities? What if we were the kind of parents who made the world a better place simply by sending our children out into the world?

We don’t own our children. They aren’t “ours” do with as we please. We are stewards of our children and stewards of our future. We have the power to shape our children into people we will be proud to know, people who will make the world a better place simply by living their lives. We have this power because we can look beyond our own culture and embrace the best of the cultures we discover amongst others.

It’s a Matter of Trust

  • Posted on September 10, 2014 at 10:00 AM

There are those who believe that people with autism, i.e. adults with autism who have the resources to self-advocate, should lead the discussions and decisions related to autism. Many of them have expressed it this belief as a matter of logic; others have expressed it as a matter of justice; and others have demanded it as their right. Those outside of these circles sometimes see this demand as self-advocates wanting to wrest the decision-making powers from parents and researchers and practitioners.

There is some truth to their claims on these powers, but there is also some untruth to these claims. With regards to researchers and practitioners, it’s a matter of scientific practice and scientific integrity. They want to control their own efforts, and they have a point in that regard; a scientist should not be forced to study something that does not interest him or her. Fortunately, the public doesn’t have to fund the objectionable research particular scientists may wish to engage in, but that doesn’t mean they won’t find funds elsewhere. But, for the moment, I’m not concerned with researchers or practitioners.

As a parent, I empathize with the position of parents. That position can easily be summarized: You don’t represent our children. Whether we’re talking about adults with autism or researchers and practitioners, the truth is that you do not represent our children, no matter how much you might want to do so. If our children are of age and have the necessary resources to self-advocate, then they can self-advocate and then we have to accept their rights to do so. If our children are not of age or cannot advocate for themselves, then we have the right and responsibility to advocate for them.

For some parents, it truly is a matter of power. Some parents continue to exercise excessive power over their children long after their children are able to engage in self-determination, self-advocacy, and self-fulfillment. They actively seek to deny their children the necessary resources to self-advocate in an attempt to maintain control of their children; they may also actively discourage self-advocacy. For the moment, I’m not concerned with them.

I’m concerned with the parents who advocate for their children because life has taught them that no one else will do so. I’m concerned with the parents who have been burned by school systems, medical facilities, and governing bodies. I’m concerned with the parents who know that their children’s interests are threatened and who stand up to speak out against those threats.

We will not let you advocate in the names of our children, because we don’t trust you. Our ability to trust has been damaged, assaulted, and betrayed. We’ve learned the hard way that “the system” doesn’t really protect our children’s interests unless we advocate for them. We recognize that you may be well-intentioned, but that doesn’t mean that you know what our children need. Furthermore, we recognize that you may not be well-intentioned; you may be self-serving and we know what serves you does not necessarily serve our children.

If you earn our trust, then we can cooperate with you and even collaborate with you. But we cannot step aside. We cannot leave the work for you to do. Our children need us to speak up. We cannot trust you to do so.