Thursday, February 20, 2014

The Day I Let Dave Down

It was bake sale day at the sub-acute rehab and long term care facility where I work as an occupational therapist. The facility was having a fundraiser to benefit the National Alzheimer's Association and staff and family members had brought in goodies to sell. I happened to be in the lobby as some staff members were setting up the tables and overheard one woman point out that wheelchairs wouldn't be able to get by the way the tables were arranged. "Well, it's only for one day," the other rebutted. They both agreed the tables would stay the way they were. 

Honestly, the conversation barely penetrated my consciousness, so intent was I on fixing my morning coffee and getting an early preview of the baked goods. But it did penetrate and I briefly considered taking a stand for accessibility. Remembering that my earlier suggestion to save space by staggering the presentation of the goods was shot down, I stayed mum. I rationalized that my co-worker's explanation - it's only for one day - was true. All they were really blocking was a sitting area with a fireplace. It wasn't like it was a bathroom or anything important. 

I went about my day, forgetting about the accessibility issue until late in the morning when I went back to the bake sale with my patient, himself a wheelchair user. He wanted to shop the sale, only he couldn't fit through the tables to see all the offerings in his chair. We had to move some furniture to allow him to pass, taking care to replace it when he was finished, of course. We wouldn't want things to look untidy in the lobby. 

I know better. I've been reading Dave Hingsburger's blog, Rolling Around In My Head, for about two years now. He writes daily about his experiences as a professional who empowers and teaches adults with intellectual disabilities, and personally, as a wheelchair user. At first, I read him because of the insights he offered to me as a mom of sons with intellectual disabilities. I kept reading him because I learned so much as a fellow human, so much about myself and the times I had been discriminatory or insensitive, even arrogant, in my actions around wheelchair users. 

Times like this. 

Reviewing the day, I am ashamed. I'm disappointed that I didn't speak up and take a stand for accessibility. But I'm more appalled at my arrogance. Take a look at my rationalization for keeping quiet: 
All they were really blocking was a sitting area with a fireplace. It wasn't like it was a bathroom or anything important. 
What gives me the right to decide for someone else the areas to which they should have access? Who am I to decide if a place is important to someone or not? Is it because I am ambulatory? Does that somehow elevate me to decision making status? I am a walker and I don't intend to use the sitting area with the fireplace; therefore, wheelchair users don't need to have access to it, even though I can change my mind at anytime, because I can still squeeze through. So wrong! Such faulty logic. 

Perhaps you're thinking that it's no big deal. It was just one day. We don't even know that anyone was actually inconvenienced. Maybe they weren't. But multiply that attitude by millions of people and then by each and every parking lot you navigate, sidewalk you travel, building you enter, and bathroom you use, and you have just a hint of the daily frustrations of the wheelchair user. I've learned that by reading Dave.

On that day, on bake sale day, I was part of the problem and I let Dave down. I'm sorry for that and I'm determined not to do it again. 

Saturday, February 15, 2014

Happy Homecoming Day! And Thank You!

One year ago, three very exhausted people unboarded a plane late in the evening of a quiet airport. One never even woke up to meet those that met us at the airport with balloons, friends who had prayed him home. Home he finally was. 
When I think of the enormity of that statement, I am overcome with emotion. We have so many people to thank. A couple of amazing women put together a short little video of our family, set-up a fundraising site, and prayed it would bring in some money. Nothing could have prepared us for the response. So many people gave, some a lot and some a little, but every dime appreciated and needed. Without you, he wouldn't be here. Thank you!

Locally, a lot of people helped with our massive fundraising garage sale by donating items, setting up, or staying and helping sell stuff in the 111-degree heat. Obviously, the shoppers were a huge blessing, too. God bless you! (That was unbearably HOT, only made slightly better by a friend loaning us a misting machine.) 

People donated their commission from Scentsy and Tupperware, and people bought Scentsy and Tupperware. Someone donated homemade cards and people bought homemade cards. And I am blown away by the creativity and generosity all for a little boy, unknown to any of us at the time. Thank you!

Those who cared for our other children in our absence have a special place in my heart. They gave of themselves generously and selflessly and without hesitation. I will be forever grateful that I could rest, across the sea, knowing that my children were safe and well-cared for. Thank you!

So many people prayed for us, in the process leading up to travel, during our trip, and in the year we've been home. Thank you!

Many of you listened and encouraged us, saying something nice when we needed to hear it, or making us laugh when smiles were few. Some of you encouraged without even knowing it by commenting frequently on Facebook posts, letting us know that you were standing with us. Thank you!

To all of you, we are indebted. You played a role in ransoming this boy. 

He is so fully part of this family that I rarely think about the magnitude of the fact that he is so fully part of this family. That is the sweetness of adoption. 

Thursday, February 6, 2014

Where is the Disconnect & How Do We Bridge the Gap?

I don't fault her for her honesty, although I admit the words stung a bit when I first read them. She is dear to me and has been a wonderful support as a fellow adoptive mom. We were conversing on a message board for adoptive mothers about adopting children with special needs. Her journey to adoption began, like many, with infertility and the desire for a family and she has two wonderful, now grown sons. My journey began differently, of course, and sometimes there is a struggle to understand the other's point of view because of it. 

Her comment was an offhanded one buried deep in a post about fundraising but directed at the idea that not everyone is called to adopt a child with special needs. 
"We weren't looking for a mission, but a child to be a part of our family." 
It got my dander up, to be sure. "Bo is not a mission. He is a child and he is very much a part of this family," I stewed. But I had to be honest with myself and admit that, while I very much hate the term "calling" when it comes to adoption, we did respond to a need on his part and not a desire on ours. In other words, we didn't go into this out of a deep desire to have more children. We had seven. That's a lot. No, we started this adoption because we saw a need and felt compelled to fill it. In a sense, it was a mission for us. 

But let me be very clear, we may have started out on this journey as missionaries, but we became in the process simply parents. We don't feed him, clean up after him, read him books, take him to therapy, tickle him, etc, because he is a project. We do all of that and so much more because he is our beloved son and part of our family. 

I responded to my friend on the message board:
My beef with making it (the adoption of kids with special needs) a "calling" is that it showcases them as somehow less than. It shows our true bias. While we give lip service to the idea that kids with special needs are valuable and equal and were created in the image of God, we don't actually want one. Rather than potential offspring and adored children, they become, instead, "ministry".
I believe there is truth there in what I wrote. But, I simply traded the word "calling" for "need" in the post I linked. My original point in that post is valid. I wanted people to realize that adoption is not just for a select few, for those who are holy or qualified. It's simply for those who can meet a need and who are willing to rely on Christ to do it. I stand by that. I want those who would never consider adoption to do just that. 

But what about those who are already considering adoption? Who desperately want to add a child to their family? Have we so emphasized the calling or need or mission aspect of special needs adoption that we've put these children into an entirely separate category, so that they aren't recognized as children, at all? 

As an adoptive mom, I frequently run across Christians who are hoping to adopt, as we now have that in common. I'm always very excited for them as I think it's an amazing way to grow a family. But it seems they fall into two distinct camps. 

The first is the "mission camp." They generally have other children in the home, they see a need and are filling it. They are adopting from foster care, across races, with special needs, older kids, sibling groups, etc, wherever the need has led them. 

The second camp is the "family camp." They want a child to grow their family. They struggle with primary or secondary infertility. They are usually looking for an infant. While they may be open to crossing races, special needs are not really on their radar or have been discounted altogether. 

And I wonder if, in part, it's because we've emphasized the "special needs" over the "child." 

It breaks my heart. 

I can only speak about Down syndrome because, as the mother of two little boys with Down syndrome, it is all I know. 

But I want you to know, there is nothing "less than" about our boys. There is nothing "less than" about our parenting experience with them. They are fully children, fully boys, fully family. Please, don't doubt that. The joy we have in them is full, the delight we have for them is full, the frustration we feel toward them is full, just like their typically developing siblings. When you adopt a child with special needs, you are getting a child...not a mission, not a calling, not a list of diagnoses...a son or daughter, a part of your family. 

Every parent I know that has a child with Down syndrome says the same thing. All of us adore our kids. In fact, an actual study was done in which 79% of parents reported their outlook on life was more positive because of their child with Down syndrome. Other studies have shown that the divorce rate among families with a child with Down syndrome is lower than among families with only typically developing kids. 

And yet, the family camp doesn't usually consider a child with special needs to grow their family. Why not? Where is the disconnect? I wish the family camp and the mission camps could blend. I want to hear more people say, "We really want a/another child and know there's a need for parents willing to take kids with disabilities. We're researching and praying with open hearts and minds." Oh, what God could do with that!

Please know that I am not laying the blame at the feet of those in the family camp. I don't think the burden lies solely on them. I think it started long before they began planning their family. Why in the body of Christ do we have this subtle bias that I mentioned earlier? Why are we afraid of special needs? Why are people with disabilities not an included part of our congregations? Why do parents of kids with special needs feel isolated and unwelcome in our churches? 

How do we bridge the gap? 

I don't have the answers to these questions. I wish I did. I know there are large, age-old prejudices and social injustices at play, as well as spiritual issues, to be sure, but what can I do? What can you do? What small step can we take to show that disability is natural, that people are people regardless of needs?

I have a few friends that are the exception to the norm. I adore them, of course. If you are not a follower of Courtney over at Pudge and Biggs, you are just missing out on sheer fun! She and her long-suffering husband started their family with the adoption of a kiddo with Down syndrome and then another "surprise" adoption (if there were such a thing) of another kid with Down syndrome before they had a home grown typically developing kid and then another surprise home grown kid (see a pattern to their family planning, or lack thereof?) You can read the beginning of their story here. The Squibs are all kinds of entertaining and I promise you will not be disappointed if you spend time on her blog. 

My closer-to-home friend, Andrea blogs over at life at mannchester estate. While she and I have belatedly realized we were walking the halls of the local children's hospital at the same time on more than one occasion, we have yet to actually meet in real life. She and her husband are parenting two daughters with unique chromosomes, by choice, although her story started with a twist. You can read it here. She is full of wisdom and humor and you will enjoy her take on life, as well. 

I hope you comment on this post. I hope you share your thoughts and your heart as you respond to my questions. Maybe, as community, we can figure this out together.