You are currently browsing the Disabilities category
Displaying 1 - 10 of 47 entries.

On Charity, Social Work, and Public Administration

  • Posted on January 16, 2015 at 10:00 AM

It is the opinion of this writer that any time you make a generalization, you enter dangerous territory. Among other things, you risk making the totality of your point (which might be valid if it were better defined) null and void by a single, contradictory example.

[Enter James I. Charlton’s Nothing About Us Without Us from stage left]

In what must be considered poignantly illustrative of their perilous and degraded status, people with disabilities are significantly controlled by charity and social service institutions (broadly considered, private welfare agencies, asylums, and residential facilities). This is the case throughout the world, although charities are more prevalent in the United States and Europe.

Some might see that it is contradictory to point out that most people with disabilities do not have access to a safety net while at the same time criticizing charities and social service agencies. (p.93)

Charlton’s premise consists of a few main points:

  1. While charities and social service agencies (lumped together, falsely) do help some, they also create dependency.
  2. They contribute to the degradation and isolation of those they help, but taking care of clients whilst keeping them out of sight.
  3. If the problems they ameliorate were solved, the charities would cease to exist.
  4. Many of the people who do this work do so because, in the words of Billy Golfus, “Their game is about wanting to be in control of other peoples’ lives,” (p. 94).

First, charities are nonprofit organizations that gather donations from the public (through public and private grants, as well) in order to meet an organizational mission. These charities may hire social workers, but a social service agency is, almost by definition, a government organization, which also hires social workers. Lumping these very different kinds of organizations together as a single problem or as a collective is logically unsound, because they operate and function in very different ways for very different purposes.

Second, the unfortunate reality is that people who cannot support themselves are dependents. While much is done that encourages continued dependence, this is true across the entire strata of society, from families to international governments. If that is to change, then services need to be made available that contribute to independence. It’s a difference of paradigm and mission, not organizational or functional structure. A nonprofit that takes creating independence, or better yet interdependence, as its mission would still be classified as a charity or a social service agency, depending on whether it’s independent or governmental in nature.

Third, organizations with such a mission already exist, as a byproduct of the same attitudes and social changes that have made the DRM movement possible. There are organizations that have already made the transition from disempowering caretaker organizations to empowering education organizations.

 

Fourth, any organization that fails to adapt when its environment changes, dies. Those that try to keep the environment from changing inevitably fail and die. Only those that change survive. This is no less true of charities than of any other organization.

Fifth, there certainly are people who strive to exert control over others’ lives. Some gravitate towards social work. Some start charities. Some start businesses. Some start wars. Most just have kids. We live in a broken world full of such people and the rest of us just have to live with that, or change it.

Despite the fact that I can pull apart the argument on logical grounds, there is truth to what Charlton is saying, especially from the perspective of people who’ve been disempowered for most of their lives. If people are ill-prepared to take control of their own lives, then there are those who will try to withhold control from them. Again, most of these people are called parents. There’s a time for this, and there’s a time to let go. And it’s never easy knowing which time any given moment falls under. There is nothing inherently malevolent or oppressive about this, though there are certainly malevolent and oppressive people who engage in the behavior.

For me, the heart of the matter is something that Charlton would seemingly refute or ignore. Charity is, loosely translated, most properly equivalent to “brotherly love.” The word as it is used today is a deviation of the charity found in the King James Bible in 1 Corinthians 13, which states in verse 3, “And though I bestow all my goods to feed the poor, and though I give my body to be burned, and have not charity, it profiteth me nothing.” The whole of this chapter gives ample evidence that 1) giving and 2) serving are not charity, that charity is loving others in Christ-like fashion, and that these acts only do good when they are done in the spirit of true charity. As Charlton seems quite anti-religion, he might find it rather ironic that his observations are proof of the soundness of this part of Jesus Christ’s doctrine, at the very least.

Shortly after reading and getting wound up over this segment, I had a chat with a social worker who also happens to have learning and neurological disabilities. This person had been struggling for months at work, because of miscommunication resulting in part from her reluctance to disclose her own disability and in part from her co-workers’ apparent distinction between things-that-apply-to-clients and things-that-apply-to-coworkers. This isn’t the first time this issue has gotten in the way of her work, either.

Part of it is that Charlton’s not wrong in his observations, he’s just wrong to generalize those observations and apply them to two entire sectors in the global economy. Unfortunately, he’s right that most of the professionals operating in these sectors have been taught in ways that contribute to the very problems he’s cited. These are people who often don’t know better, in that they’ve never been clients. The people who have been clients tend to be marginalized, in part because they’re not taught how to counteract the forces that marginalize them. These issues are not particular to disabilities, but are holistic and systemic within both sectors.

My friend has been a client in almost every applicable way. She has had disabilities, presumably for her entire life, but has gone undiagnosed or underdiagnosed for most of her life. She grew up in extreme poverty and in an environment rife with abuse and neglect. She has been failed time and again by the systems that supposedly operate to protect and support people like her. She entered her profession to do better for others than was done for her. And she’s not alone. There are many, many like her all over the world, who have struggled against terrible odds, who have become professionals in either the nonprofit or public sector, and have chosen to do better for others. And Charlton’s rash generalization erases them all.

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.)

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.

Soldiers & Disabilities

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

If you’ll recall, when the wars first got going, there was a significant amount of attention paid in the U.S. media to the needs of soldiers who had children with disabilities. Programs were created. Problems were solved. Families were taken care of while soldiers went off to war.

Now, as our soldiers are returning from those wars, there is a significant amount of attention being paid to the needs of soldiers who have acquired disabilities while in service to our country. Some of these disabilities are physical in nature. Others are psychological or mental-emotional in nature. Some are both. Programs are being created. Problems are being solved. Our soldiers are being taken care of.

One could easily argue that we, as a nation, don’t do enough for our soldiers. I agree, but that’s not my point.

Both times, people with disabilities and people who had children with disabilities, people in the general population, were hopeful that the experiences of these soldiers would translate to more awareness, more support, and more help for people with disabilities who are citizens but not soldiers. Both times, people have been woefully disappointed. Before now, I never got why these incidents of increased awareness were never generalized.

The public administration perspective, I’m learning, is a rather peculiar worldview. The way working with government agencies shapes ones outlook on the world and its programs is somewhat surprising. After a while, though, it makes sense. As I have interacted with my instructors and my fellow students, I’ve noticed that most of them, with very few exceptions, are far more invested in the PA worldview than I am. I’m not just an outsider looking in; I’m an outsider that is privy to a very intimate look at the worldview itself and how it is shaped.

Despite the natural efforts to pull me into the group, I am most definitely an outsider. My purposes for being in this program are different than the common purposes shared by most of my peers. I have never worked for a government organization and I don’t really intend to do so. That’s not why I’m in the program. I’m not getting this degree to further my career. I am here to learn how to (and how not to) design and build nonprofit organizations that work. This program does serve that purpose—I’m learning, especially with the addition of my independent studies, what I need to learn, even when I didn’t realize I needed to learn it. My unique perspective is also valued—I’m not being forced to conform (not that that works well with me anyway), nor am I being excluded. But I’m still an outsider. I don’t share their worldview, but I’m starting to understand it and even appreciate it.

From a PA perspective, meeting the needs of soldiers during the war helps us succeed in our war efforts. It may be a relatively small contribution, but these small contributions can add up to make a big difference. After the war, meeting the needs of soldiers is both a matter of duty and an investment in our ability to attract new soldiers for the next war or the next deployment. This forward-thinking focus is something I can appreciate; it shows that they recognize the impact their positive and negative actions have, which is very important. Unfortunately, that focus has side effects; the reason this attention to our soldiers’ needs is not generalized to the non-military public is because the attention isn’t really on the needs, but on the soldiers.

For example, there is an effort in our government to help soldiers (with disabilities or not, but especially those with disabilities) obtain government jobs. They’re given a priority in hiring and it’s not only legal, but the requirement to do so is written into our laws. It is considered very important to give qualified veterans an especially good opportunity to work for the federal government and to benefit from support services and training to qualify for a position and to benefit from advancement opportunities once a position is obtained. There is also an effort in our government to help people with disabilities in a similar fashion. They also enjoy certain privileges in hiring that aren’t available to the general public, and may even benefit from non-competitive hiring. BUT while the goals are similar and the methods are similar, the programs aren’t linked. I can find little or no evidence in the consciousness of this worldview that there is a clear and discernible interconnected relationship between these two programs. We have soldiers (with or without disabilities) and we have people with disabilities. There is no recognized overlap.

As an outsider, this is mindboggling. But as an outsider with an intimate view into how this worldview is formed and how it operates, it makes a “common sense.” I’m not saying that it makes sense; just that it makes the kind of sense “they” hold in common.

Our government recognizes that we do not treat our soldiers as we should, and they’re trying to do something to fix that. Our government recognizes that we do not treat people with disabilities as we should, and they’re trying to do something to fix that. But they see both groups as distinct, separate demographics. They treat them as distinct, separate demographics. They address their needs as distinct, separate demographics. And, in doing so, they miss the point. It seems to me that they’re so worried about missing the forest for the trees that they’ve failed to understand that the trees aren’t the forest. They don’t realize that they can “save” the forest without really helping the trees.

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.

Stupid and Useless

  • Posted on December 4, 2014 at 10:00 AM

Those are loaded words when you’re part of a community of people with disabilities. Far too many people have been derided as stupid and useless for far too long. Yet those words struck a chord with me.

“Stupid useless pain is much harder to bare than pain with purpose.” –Dr. David Schnarch

I read these words in a book about marital relations. Of course, the book in question addresses far more serious situations than I am concerned with, but I’m finding the basic tools are applicable. More to the point, the pain I thought of when I read these words did not involve (at least, not directly) my husband Mark.

I’m not prone to hyperbole, so believe me when I say the last two months have been hell for me. I’ve had meds messing with my mind. I’ve had so many troubles and complications that I’ve given up hope, gotten it back, given it up, and gotten it back more times than I can count. I’ve been sick for over a month and got so used to feeling weak and dulled that I didn’t realize how far I’d slipped until I started to climb back up to my strength. I’ve been angry at God. I’ve coughed until my lungs hurt and then coughed some more. And, no matter how much I try to get back on track, I keep slipping back into a cycle of decline-and-recovery. I’m still not even with myself.

Most of this time, I’ve felt like everything I’ve been going through was stupid and useless. It’s been painful—physically, mentally, emotionally, and spiritually painful—and it was useless and stupid and ENOUGH IS ENOUGH ALREADY!!!

Like most human beings, I seek relief when I’m in pain; yet, I’ve gone through some incredibly painful experiences and I’ve bore them much better because I’ve understood their purpose. I’ve born these last two months quite poorly. I’ve done things I despise, like yelling at my child for being uncooperative because I just couldn’t handle one more thing. I haven’t done things that I should, like finishing all the work I promised to my clients months ago.

As an adult, when Mark moved to a new place, he’d walk around until he got thoroughly lost in order to learn more about the place he chose to live. On the other hand, we took a trip as a family and I ended up missing an important turn. Instead of going down I-35, we were going down I-90. We got so lost and mixed up trying to cut across between the two that Mark literally used the sky to navigate for me. I hate being lost. Mark takes it in stride and he finds the way forward.

These last two months I’ve been lost and I hated every moment of being lost. I hated being weak. I hated being tired. I hated being in pain. I hated my complete inability to turn things around. I was fighting so hard against the things I hated and I wasn’t getting anywhere. It was stupid useless pain and it was eating me alive.

Then, I stopped fighting. This time it wasn’t a matter of giving up; it was more a matter of looking around and looking up. Two things occurred to me. First, I knew that I had finally completed my memoir and that, whatever happens, it will be published. Second, I saw that in trying to start from scratch I’d begun writing again.

Granted, my business is a writing business. I’m always writing something. But everything I’d been writing since I obtained my graduate degree in writing was written with a specific purpose in mind. Whether it’s for a client or for myself, it’s all been driven by a purpose, by an objective, by a goal. Everything I’ve written has been practical.

I am not, naturally, a practical person. I’m a dreamer. In living my dreams, I’ve pursued practical purposes that, together, are supposed to realize my dreams. But practicality doesn’t come naturally to me. Dreaming does. So, when it came time to replenish my creative well, I started writing the passionate ideas that came to me—without a predefined purpose. And it was liberating.

Now, practically speaking, I’d stopped writing in order to better use my time in my writing business. I suspect that there was no other way to get me writing again than to knock me so thoroughly down that I had to go back to my roots as a writer just to stand myself back up. You see, decades ago when I started writing, it wasn’t with purpose—just passion. I loved to write. Writing excited me. It thrilled me. Cultivating my talent and turning it into a business was something I was proud of, something I loved.

Then, once I’d actually got my business up and running, there came the pressure and the consequences of that pressure and the consequences of those consequences. I became driven. I was still inspired and I was still passionate, but I wasn’t using that passion or that inspiration, not to its fullest. I was working towards a purpose. Everything else fell to the wayside, including the love I had for what I was doing.

So, while I’m still recovering, I’m recovering with a purpose. I’m recovering my faith. I’m recovering my inspiration. I’m recovering my work ethic. And, yes, I’m recovering my health, too. My life is imbalanced, but I’m getting better now that I have a purpose I can really live with, despite the pain. And I’m about one-fourth of the way through the first draft of a novel that I’ve been trying not to write for at least six months. Now, that was stupid and useless, wasted effort. And I realized it by realizing, once again, that pain is necessary for growth and renewal.

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!