Sunday, September 26, 2010


Every now and then a show enters prime time television that you fall in love with. Last Fall was no exception. When Rob and I sat down to watch Parenthood for it's series premier on NBC, we had no idea what to expect. The cast seemed like a good mix. We heard one of the story lines would focus around a child with Aspergers and the affect on his family unit. We were impressed. We would definitely watch again.

As the season progressed, we continued to be blown away each and every week. There are obviously numerous story lines going on, yet the writing surrounding the character who has Aspergers was spot on, including its relationship to the other story lines. It is now in its second season and one of my favorite shows currently on the air.

Explaining what our life is really like to others has proven to be difficult, especially when people are genuinely interested in understanding. With Parenthood, we have something we can refer them to. It is watchable and understandable. To be perfectly honest, the character of Max is fairly consistent with our day-to-day life with Dylan. If anything, it's a watered down version of our real life.

Each and every episode always hits home. Dylan is currently on Fall Break and this is one of the hardest times to be his mom. Keeping Dylan occupied with stimulating activities is exhausting and time consuming. Add excessive heat, his desire to run off and a nauseous, pregnant mommy, and it can be down right miserable. I love being Dylan's mom and embrace it fully, but when his routine is disrupted, life is challenging for our entire family.

If Dylan had his choice, he would watch movies, television shows, You Tube videos and play computer games all day (when he's home). Obviously, we don't allow that. But focusing him on other things can be grueling. He doesn't play with toys like his siblings. He hates heat, so playing outside is the last thing he wants to do. He enjoys going outside, but that can be incredibly difficult because of his desire to run off. With only one set of eyes - mine - it is potentially dangerous, even with Yoko!

Beyond keeping Dylan entertained, it is times like these that I am reminded how engulfed Dylan is in his own world. He cares for our family and interacts with us, but when he's focused on what is currently of interest to him, no one else exists. It's hard and it breaks my heart. I have to remind myself he's perfectly happy and content, even if I want to cry buckets. I also remind myself of what life was like before Yoko and it was significantly worse. Since Yoko, his vocabulary and ability to express his wants, needs and desires have improved greatly. Yet we are always working towards pulling Dylan out of his world and into ours. It improves with each passing day and some days are better than others. But when a rough day - or days - come along, it can feel as if we've gone back in time by nearly a year, especially when he's on an extended break.

Parenthood isn't a perfect show and there are aspects that we don't care for, as we are a Christian family. However, if you would like to understand the life of those with Aspergers, Autism, Down syndrome and a variety of other special needs, I highly recommend watching it. The interaction between Max (the character with special needs), his parents, sister, extended family, friends and acquaintances is incredibly well done. When I watch the show, I feel as though I'm looking in a mirror, at least to a point. If you happen to watch, you're bound to learn something new that I doubt I could ever put into words about our life with Dylan. And yes, our life is FULL of sticker charts!

Sunday, September 19, 2010

Flying Wheelchairs

A small voice broke the silence as I drove. "Mommy, I wanna be a yellow shirt." Before I could say anything, Jeremy continued, "You know, a yellow shirt. A helper for Camp Attitude." Tears rolled down my cheeks as I begin to process what he was telling me. He continued, "I want to help the kids in the wheelchairs. I want to push them around and help with wheelchair races." Somehow, through my tears, I managed to tell him I thought this was his best idea ever.

There is no doubt that Dylan's siblings are exposed to a wide and vast world of special needs. We returned from Camp Attitude several weeks before that. We spent a week around children and adults in wheelchairs, some who are fed through feeding tubes, others who suffer seizures, some who use communication devices, three year old's who use walkers and individuals who have titanium legs (or "robot" legs if you went with Jeremy's description). The kids had attended camp and fully embraced the new individuals they met...wheelchairs and all...but Jeremy caught me completely off guard by what he was telling me.

As a parent, you never know what is going through the mind of your child or what words will escape their lips. Kids are brutally honest. This is the only life that my kids know, yet I think they somehow understand that the world that surrounds them is unique. I want their experiences to leave a positive impression. As a special needs mother, I never know when I might have to take some time to explain a heavy topic with little notice.

Weeks after our camp experience, the kids really had not asked many questions. Greg and Savannah are still very young. We have discussed in depth with Jeremy that all people are created differently but that we were all created by God. Dylan, of course, is oblivious to it all, although I think the "robot" legs made even him take a second glance, which resulted in a "Ooooo, wow!"

There are moments when I worry about my kids and their exposure (or lack of exposure) to various things. For our family, participating in recreational sports is difficult. Little League and nearly all other childhood sports do not fill our Saturdays. It's simply too much for Dylan: the weather, the stimulation...the list goes on and on. We spend more time in controlled, indoor environments: bookstores, libraries and even zoos. It just makes our life a little bit more sane. I would be lying if I didn't tell you that it disappoints me that we don't participate in youth sports. This may not always be the case and I am already beginning to see changes within our family dynamic that may make it possible to do things we haven't been able to do in the past. Only time will tell what the future holds for Dylan and his siblings.

A few days after Jeremy's "yellow shirt" announcement, he did something that amazed me. I never know what to expect when he says, "Mommy, look!" Nine out of ten times he blows my mind. I turned to see Savannah sitting on a small rocking chair. Jeremy had placed the chair on top of a Mickey Mouse Airplane Ride-On toy! It was a "flying wheelchair". Jeremy had come to realize, in his own way, that kids in wheelchairs are often looked at as "uncool". He said, "Mommy, it's a flying wheelchair! I can make flying wheelchairs, like the flying cars, when I grow up, so that the kids in wheelchairs will be COOL!"

Jeremy is my artist, thinker, day-dreamer and little inventor. We all have natural abilities and strengths. There are most-certainly negatives and positives to growing up with a sibling who has special needs. When I look at Jeremy, I see a little boy with a great big heart who sees those like his big brother as God sees them - no different than everyone else in this world.

Sunday, September 12, 2010

The Ugly Law

Had I been an adult in the 1960's or 1970's, it's likely I would have been arrested on more than one occasion. After watching the movie The Music Within, I sunk deeply into our couch. My mind was racing, my heart aching. Could it really be true? Could someone really be arrested for being ugly and/or disabled or for coming to the defense of someone who was? It couldn't be. I figured that it had to be one of those aspects of a "true story movie" that was loosely based. There was only one way to find out. Time to visit the internet.

I typed in "Music Within Ugly Law" and numerous links popped up. I was hesitant to click any of them. I wanted to know the truth, but there was a part of me that just wanted to keep thinking "This can't possibly be true?!?!" Sadly, and without much effort, I found the information I was hoping I wouldn't find. Beginning sometime in the early 1900's, an individual could be fined and/or arrested if they were found to be ugly by their peers. In places like Chicago, Omaha, Nebraska and Columbus, Ohio, the Ugly Law was clearly stated in their municipal code.

Chicago's Law read as follows: "No person who is diseased, maimed, or mutilated or in any way deformed so as to be an unsightly or disgusting object or improper person to be allowed in or on the public ways or other public places in this city, or shall therein or thereon expose himself to public view, under a penalty of not less than one dollar nor more than fifty dollars for each offense."

One of the reasons for such a hideous law was that the general public didn't want to deal with those who where disabled or who suffered some other poor, physical condition. If they were "out of sight", the truth of this "ugly" community didn't have to be dealt with.

As difficult as it was to read that this sort of thing existed (and not that long ago) wasn't a huge surprise as I began to ponder it more. I am just in my early thirties, but my exposure to individuals with disabilities and special needs was rare when I was growing up. My underexposure wasn't intentional. Individuals with special needs were not
included in classrooms back then. Organizations that were designed for such groups were in their early, formative years. In June, 1962, Eunice Kennedy Shriver hosted her first summer day camp from the backyard of her own home.

For decades, those with disabilities - especially when it was known at birth - had parents who were urged to place them in institutions. They were told their children would never walk or talk or be of value to society. For those who followed their hearts and kept their children within their family unit, they were often shunned by friends and even family. They feared going out. As I watched this movie, I had a better understanding of why I had not been exposed as a young girl. They were just beginning to emerge into society when I was born. They were finding their footing in a world that was fighting silently to keep them locked up and hidden away.

The existence of the "Ugly Law" disgusts me, yet it was this law that led to the creation of the Americans with Disabilities Law of 1990. Yes, 1990! I had no idea that this law was just twenty years old! We live in a fast-paced, ever-changing world, yet the acceptance of those with disabilities just came in 1990?!

I'm incredibly thankful that I received the privilege of becoming Dylan's mama when I did. But while our society is learning that the life of Dylan is indeed valuable, many still question it. I've witnessed their stares...and I've stared right back! The life my family leads makes some people uncomfortable but I welcome it. It's an opportunity to teach. It's an opportunity to see others be challenged and grow. The process isn't fun, but it's something I would be happy to be arrested for any day, any time.

Sunday, September 5, 2010

Empty Nest

I was talking with someone recently when my current pregnancy came up. They said, "Wow, it's gonna be a long time before you have an empty nest!" It's true, but not for the reason you might think .

I don't think about it often, but it is something Rob and I have talked about on and off since becoming special needs parents. Most children are born, grow and leave "the nest". Sometimes they return at various ages and stages for a slew of reasons, but traditionally, the goal is that your child will lead their own life someday in their own home. I pray daily that this will be the case with our children - that they would lead successful, happy lives - on their own.

But we've got Dylan. It doesn't mean we won't have an empty nest someday, but it certainly spices things up. Individuals with Down syndrome attend various levels of higher education, live on their own, hold steady jobs and marry. This surprises people, but it's very true - and absolutely wonderful! Obviously, Rob and I want Dylan to be as independent as possible. Only time will tell.

The funny thing is that there is a part of me that selfishly wants Dylan home when he should be spreading his wings. It's not that I don't want him to grow and be independent - which he does daily - but I also know my red head well. Right now he likes to bolt and refuses to answer our calls when we attempt to find him, but I believe in time that will improve. There are things about him that will not change - and that's a good thing.

I got what I always wanted: a boy first and a girl last (well, what I thought would be my last!) God gave me exactly what I wanted in more ways than I could have ever imagined. Dylan is full of love and very sweet. He loves music. His current crush is Snow White. When Savannah is six, Dylan will be fourteen. I have a hunch that while Dylan will want to hang with his buddies, yet he's also a homebody and will be happy to play dress up with his sister and be Prince Charming when she's playing make believe.

When I think about the baby growing in my belly, it will be ten when Dylan is twenty. Dylan loves to read and I can already picture the two of them reading together. Dylan loves Disney movies and while I'm sure his tastes will mature, my gut tells me he will always have a place in his heart for Disney and all other kid based movies...making good company for his younger siblings!

Dylan continues to grow up daily. I've been sick and asked Dylan if he could pray for me. He said "Uh, yeah". I had no idea what he would say. He tends to say very particular prays for certain things - going to bed, blessing the food, etc. But I was asking him to do something new - pray a new prayer. While I don't recall his exacts words, it went something like this, "God, go to Disneyland, love mommy, mommy sick, feel better and go to doctor, Amen". To be honest, I was shocked. But I was also thrilled. It was another sign of maturity.

Maybe Dylan will attend college. Maybe he won't. I know he'll hold a job, but I have no idea what or where. He might marry, he might not. He might express the desire (and ability!) to leave the nest. If he does, it's going to take everything in me to not clip his wings.