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Displaying 1 - 10 of 12 entries.

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!

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!

Closer to Balance

  • Posted on June 9, 2014 at 10:07 AM

I’ve made a decision to seek balance in my life for the sake of my health, and for the sake of my family, and for the sake of our financial well-being.

As the breadwinner of the family, I need to work to win our bread. As a freelancer, I don’t get paid if I don’t actually work for my clients. There’s no paid sick leave, no vacation pay, no paid medical leave of absence for me. If I don’t work, we don’t have enough money to pay our bills and buy our groceries. We do get assistance, but it’s not meant to be enough to live on.

As the mother of three children with disabilities, there are a lot of external expectations (from outside our family) and there are even more internal expectations (from inside our family). There are wants, needs, and urgent matters. All these things demand my attention. Then, of course, there are the normal household tasks, like shopping, dishes, and laundry. There’s also the morning routine and the nighttime routine, both of which are about to change since this is the last day of school. When I can’t take care of my family, there is only so much slack my husband and our support team can pick up. I’m essential to my family’s well-being, not just our financial well-being.

As a person who is experiencing a disability, there are doctor’s appointments to attend, medications to take, and forms to fill out in preparation for appointments. There’s also sleep to get and food to eat and muscles to stretch. These are all necessary parts of trying to get my sleep, concentration, and pain levels under control. The better I manage my health, the more capacity I have, and the more I have to give to my family and my work.

All these things demand my time, my attention, and my commitment. And that doesn’t even include things like personal relationships, exercising my creativity, and watching some stress-reducing, pure-pleasure television shows (I’m currently watching Charmed for the first time).

I need to find balance. Admitting this is helping me to move closer to attaining it. I find that I stop more to question my own compulsiveness and reflect more on what is important, instead of simply responding to what is urgent. I’m a work in progress, but I’m getting closer.

Reconnected

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

So, my brother came for Christmas, stayed through the New Year, and returned to his own college in New York City last week. It’s difficult to put into words what such a lengthy visit did for the rest of my family. On the one hand, my brother and I do a fairly good job keeping in touch. We’re both very busy. I have work and school and family. He has work and school, but his school is much more demanding than mine. So, weeks go by that we don’t communicate at all, but there’s still a connection between us. Usually, that seems like enough.

Having him here for such a long time—three whole weeks!—made me feel how disconnected we’d become. On the one hand, it is necessary. It’s even inevitable. On the other hand, this time together was a stark reminder of how much we miss by not being a regular part of each other’s lives.

Part of it is the intellectual stimulus. My brother is immersed in studies that are very different from my own. He also supplements his studies with additional interests beyond my own. I do the same with interests and studies that differ from his. When we get together, we both have a lot to talk about that enriches each other’s worlds.

Beyond this boon, Patrick’s studies and his interests enable him to connect with my boys in a way that Mark and I cannot. While we see their talent, we cannot grasp it or nurture it as well as we’d like. Patrick has an eye for things we cannot see. Whereas we recognize their talent, at least in part, on the basis that their visual arts have already surpassed our abilities; Patrick sees and appreciates their art as only a fellow artist can. Of course, Patrick is an architect, which is a kind of art, whereas their art is less functional. But still, he has an eye for it that we lack, but has the words to bring us further into it.

The bigger part of it is, of course, the emotional stimulus. It’s not that I’m lonely by any stretch of the imagination. With a loving husband and three loving not-so-little boys, my days are full of emotional connections. On the other hand, aside from my mother, my days are rarely shared with others outside my family unit. I don’t have much in the ways of “local” friends, at least not those that I spend time with on a regular basis. I have “virtual” friends all over the world. As much as these relationships mean to me, it’s not the same as sitting down with a cup of coffee and chatting or playing a game of cards. When my brother was here, we did a lot of both. The time together became so precious that I didn’t even try to work. Instead, I devoted myself to soaking up every opportunity I could with my brother.

Now, he’s back at school. Soon, my own semester will start up with two new classes. Life goes on and I must go on with it. I’m not even sure when I’ll get to see my brother again. This summer he’s going away for some international studies, so it’ll probably be Thanksgiving or Christmas before I see him again.

I think of the other people in my life who I’ve tried to stay connected to, despite the distance. For a while, my best friend from high school (who is also my husband’s foster sister) was an occasional visitor. She lived in Iowa, then Indiana, and so we didn’t see her often, but at least a few times of year we’d get to connect in person. Now, she’s moved to Alaska. My best friend from middle school tried to reconnect last year, but our phone calls seemed to pass each other by and our connection seemed to fail. As much as I want to try again, part of me fears the moment has passed.

I’m not lonely, not in the traditional meaning of the word. My life is full and I’m grateful for that. I’m grateful for all the people and activities that enrich my life on a daily basis. But this taste of something else, something different leaves me wondering if, perhaps, my life could be fuller still if I knew how to stay connected with those who are on their own paths, paths which are so different from mine.

More than even that, my brother’s presence made my home a happier place for all of us, and that’s definitely something to cherish.

God is Good!

  • Posted on August 21, 2013 at 10:00 AM

I rarely indulge in spiritual or religious announcements on this blog, but this time I simply cannot resist. As you may be aware, my family has been struggling lately. Things got especially difficult last month.

But after the darkness, there is light!

For starters, I have been admitted to Rutgers University and I will soon be starting my fall classes! I will be studying Public Administration and learning how to create the nonprofit organization that is taking shape in my mind. I’m very excited!

I’m also seeing more freelancing opportunities and earning more income. I’m at the point in my career where I feel like I’m holding one of those Magic 8 balls with the triangle telling me, “All signs point to yes.” With that thought, though, comes a Hitchhikers Guide to the Galaxy flashback—all I need now is to discover what the question is!

More than anything, I have to say that God is good, because I’m in much better spirits. Whatever comes, He will see us through. Along the way, we will know the joy He gives us. For now, that’s more than enough!

And, of course, the boys’ school is starting up soon. Willy is entering high school. Life is going to have a whole new normal for us to deal with. And I’m not even feeling anxious about it!

Light Box

  • Posted on July 1, 2013 at 10:00 AM

My brother, Patrick, is a fabulous uncle to his three autistic nephews.

Now, in our case, we’re luckily enough to be blessed with a really understanding, supportive family who not only accept that our boys are different, but go out of their way to accommodate these three precious members of the family. We’re surrounded by this loving effort year-round, on all sides.

And I know this is a substantial blessing, because I talk to other parents and am often saddened to hear how other autistic children are excluded from events shared by their families. I think back to when the boys were little and none of us knew what was going on and remember just how hard it all was for everyone. So, I get it. I do.

But, at the same time, I don’t, because once we knew what we were dealing with our entire family made an effort to include these three special children. No ONE, not even one member of my family, has made my boys unwelcome. It took effort on all our parts, but the effort was made. And it works. Sure, our family events are different than they otherwise would be, but they do work. And, believe me, I know how lucky we are and how very blessed we are, because I couldn’t do what I do without all this wonderful, heart-warming support.

So, it’s not like my brother is a novelty when it comes to embracing my children as they are.

And yet, my brother is a novelty, because he gets my boys in a way that nobody else does, that nobody else would think of. Including me. Including Mark. Patrick understands a part of them that is its own special connection. And I’m constantly astounded by this, because he’s able to do this despite the distance that often separates us all.

My brother came for my commencement ceremony and during this visit the magic happened with a light box. Technically, a light box is not a toy. It’s a fancy tool that artists and architects use to do work. Patrick had one, and he decided to give it to his nephews.

M – A – G – I – C

It’s that simple.

Willy was fascinated. Alex was captivated. And Ben…adorable Ben. I turned around and saw Ben listening to the light. He was smiling, enjoying it, and listening to the light. I haven’t tried, so I don’t know if I could hear what he heard. But…that was so Ben and so strangely appropriate.

M – A – G – I – C

I can encourage my boys in their art. I can supply them with materials. I can look for opportunities. And I’m not alone in this. Many members of our family have contributed to their love of art, which gives them such joy.

But my brother understands this on a deeper level. On a light box level. And it’s its own kind of magic.

Anticipation

  • Posted on June 24, 2013 at 10:00 AM

Both my father and my brother came up to Wisconsin to help celebrate my recent graduation from National-Louis University with a M.S. in Written Communications. Knowing the value of foreshadowing, I made sure the boys knew that we had special visitors coming. I wouldn’t say I revved them up to a fever pitch, because that would have been silly of me. But they knew, they anticipated, they were excited.

Then, the moment finally arrived and my brother walked in the door.

“Hi, Uncle Pat!”

…I waited…

…I waited…

But, that was just about it.

Sure, they played with Uncle Pat. They interacted with him. But it was done with such aplomb, I was…well, I was… Hm. Is this a good thing? Should I fight this? Should I…?

I let it be what it was and just… Hm.

Well, told myself, it would be different when Grandpa arrived, because it’d had been longer since Grandpa had come.

Then, my dad arrived. “Hi, Grandpa! You look different.”

…I waited…

And, then I just didn’t bother with that and just sat down and had a great chat with my dad and that was fine.

It was what it is. Good thing? Bad thing? Nope. It just is and I’ll take it.

Breaking Out of Our Microcosm

  • Posted on March 22, 2013 at 10:00 AM

One of the greatest difficulties we face in raising a family with multiple special needs is that those needs and the family needs those needs create can become so consuming that our family becomes something of a microcosm unto itself. Outside of this microcosm is a community greater than ourselves, including family, friends, acquaintances, and local/state/national/international community. All too often it seems this greater community provides inputs for the microcosm while getting little in return.

My family has lately experienced many, many relatively minor, non-life-threatening hardships. Though they are relatively small in nature, there have been so many it has consumed much of our attention, energy, and resources. Outside of this, we’ve had friends and family members who are experiencing much bigger hardships. Outside of this, our community has been wrenched by numerous tragedies. In some ways, unless those hardships and tragedies are thrust right in front of me, it seems all this happens at the periphery.

One person in particular comes to mind. A member of our family has been enduring treatments for cancer. There’s the pain of the cancer, the pain of the treatments, the many inconveniences, hardships, and emotions that are involved. When he is with us, as there have been times when he was, we show our love, our concern, and our support.

But then the avalanche of needs comes crashing down and it’s all I can do to remember and be mindful of what I’m supposed to do at the moment. Partly, that’s the fog clouding my mind. Partly, that’s the seemingly unending barrage of needs that must be met. Whatever the cause, whatever the reason, however much it needed to be so at the time, I look back with regret that we were not a greater source of support and love as he struggled through this treatment process. Now, that treatment process has ended.

We were able to be there, showing our love, our concern, and our support. We were able to take a break from our own concerns and the overwhelming needs of our family. We were able to be there and to be there for him, not as ourselves so much as a part of the greater world beyond our microcosm. It was good to be there!

Now, we must simply hope and pray that the treatment was a success and try not to get too caught up in our microcosm in the process.

Self-Care: A Philosophy

  • Posted on January 4, 2013 at 9:00 AM

The development of a worldview and a belief system is one of the most important of our lives. This usually occurs from some default process—an accumulation of what we learn at home, at school, among our family and friends, and from the entertainment we consume—and influences our decisions for the rest of our lives. Once our worldviews and belief systems are formed, they tend to be difficult to change. When we live our lives in conflict with our beliefs, we experience internal dissonance that causes stress and we’re not always consciously aware of why this is happening.

My worldview and belief system, rather my priorities as they are formed by my worldview and belief system, look something like this:

Ethics
Family
God
School
Work
Extended Family
Friends
Career
Household Management

Self

I do not put this forth as something that is “correct,” but (with minor fluctuations based on urgency) this is how I prioritize my life. The dot-dot-dot represents minor things that, while not essentially priorities, tend to be considered before I think of myself and my own needs. Self-care is something I rate, as per my worldview and belief system, as a rather low priority.

I’ve resisted the wise and reasonable counsel that has warned me—for years—that this series of priorities doesn’t work. I’ve talked about it with family and friends. I’ve read the testimony of my fellow parents of children with special needs who have posted about their own struggles with self-care. I’ve read about it in countless books, from nonfiction to fiction. In short, I’m far from the only who has been taught to regard self-care as an act of selfishness and to regard selfishness as an undesirable trait. I’m also far from the only one who has figured out that regarding self-care in that way doesn’t really work.

On the one hand, there’s that old saying, “If Momma ain’t happy, then ain’t nobody happy.” Despite the deplorable grammar, the saying rings true. As a caregiver, our moods and emotions impact (either positively or negatively) those we take care of. Of course, the same could be said of either parent, regardless of their role (caregiver/financial provider/both), and could be said of those who are being taken care of, too. In a family, the moods and emotions of each individual family member affects the family unit as a whole. Therefore, if the goal is to provide one’s family with a happy, stable, healthy home environment, then it is important to meet the needs of every member of the family.

However, this brings us back to the difficulty of changing someone’s worldview and belief system, even when that someone is yourself. While it’s easier to change one’s own worldview and belief system than it is to force someone else to change theirs, it can still be an immense struggle to change what you believe, even when you have a reason not to believe it any longer.

For me, it has to do with the holistic nature of the way my mind works. Learning something that throws my ideas out of balance—that proves that something I’ve held as true isn’t true after all—creates a need to have a true replacement that fits with everything else before I can have a stable whole once again. Something as fundamental as the essential nature of my priorities is intertwined with just about everything else I know and think. In order to reassess and reassert my priorities, I need a whole philosophy that incorporates the new information.

I’m still working on that. For the next while, that is what my self-care posts will be about

Reminiscing

  • Posted on July 27, 2012 at 8:00 AM

Memories surface like bubbles, so fragile they pop if I try to hold them. I remember holding Willy in one of those rare moments when he actually relaxed in my arms. Even then, a firm hug was a powerful thing—if only I’d understood. Alex trying to rewind his VHS cassette and saying clear as day, “Watch byes.” Ben, small as he was, overflowing Willy’s arms as he tried to hold him for the first time, propped up by pillows on all sides, and Willy leaning forward to plant a wet kiss on his baby brother’s forehead.

When things get hard and everything seems so overwhelming, it’s these moments that assure me that we’ve done lots of things right. We’ve made mistakes that have left scars. Others have inflicted injustices on our family that have left scars. All of these scars seared into our psyches matter, but they’re nothing compared to these memories—past, present, and future.

We are a family and we will hold.