Sunday, April 13, 2014

The Pity Party

I admit to feeling sorry for myself as I was again sitting in the room usually reserved for nursing mothers watching Bo play with blocks. When we returned to this church, I knew there wasn't a place here for him and I determined not to complain. We came back wanting only to be a blessing, not to demand one or create a burden for anyone. 

And we are blessed. 

This quiet room is available to us. It has a comfortable couch, small toys, room for my boy to run around a bit, and the sermon piped in, even a window to look over the service. 

But today I was feeling isolated and alone, far from where the action was, wondering why I had even bothered to be there. 

The day did not have a stellar beginning. My husband woke up with his third day of migraine and knew from experience that the fluorescent lights of the sanctuary would be his undoing and decided to stay behind. 

Then, three-year-old Keturah decided it was the perfect time to give herself a haircut, or more specifically, an asymmetrical mullet. It was unclear for quite awhile if the resulting tears were from regret or getting caught in the act. I'm now quite certain that the tears of regret will come later today when the rest of her hair is cut to match. She stayed home with Daddy.  

I lost my key to the Durango when I was buckling Bo's car seat into it. I was completely baffled and beyond frustrated that I couldn't locate it and had to take Shawn's set. It wasn't until we returned home that his older sister found the key in Bo's seat when she unbuckled him. 

Needless to say, I wasn't exactly in the correct frame of mind to worship. During the songs, Bo kept taking my hand trying to pull me upstairs to play with him, further distracting me. When that didn't work, he did the one thing that guaranteed success and pooped in his pull-up. He's a problem solver, that one. 

By the time he'd been changed and I had settled in to listen to the sermon in our quiet room, I'd already worked myself into a bit of pity party. 

I didn't even notice when Bo took all the couch cushions off and stacked them up. That must have clued him in that something was wrong with me. He tried to engage me in a game of cars like we often play and I halfheartedly zoomed one over his legs like I know he loves. 

But I was feeling restless and distracted and discontent. 

Sensing my mood, this child of my heart climbed up next to me, wrapped his arms around my neck, and hugged me. Surprised, I barely had time to respond before he flashed a quick grin and scampered down to play with blocks. 

I was stunned. I love this boy, but he does not give affection freely, especially not to me. He obliges only half the time when I ask for a hug or kiss and then only begrudgingly. As I was processing what had just happened and wondering if I had, in fact, imagined it, he climbed up again and laid his head on my chest. This time, I recovered quickly and managed to rub his back as he relaxed against me for a short time. 

My pity party forgotten, I played more earnestly with him after that. With an ear on the sermon, I played cars and built block towers for the rest of the service, relishing in these uninterrupted moments to be fully present with this child. I was rewarded with another spontaneous and genuine hug. 

What a gift this time together is, free from the distraction of siblings and cell phones, and, in my selfishness, I almost missed it. 

That would have been the real pity. 

Saturday, March 22, 2014

Haters in Disguise?

I'm feeling discouraged and overwhelmed by the world around me. Do you ever feel that way? 

The family is good. While it's the usual crazy and loud, it's not overwhelming at this point. We are in a good place. 

It's the rest of the world that chaps my hide. I saw on facebook that an old high school friend "liked" this article/video in which Bill Maher says you aren't an environmentalist unless you care about overpopulation. Stupidly, I read the comments which vilified large families like mine for all that is wrong in the world. 
That's why I hate that show about the duggars that glorify over breeding
Agree. Education of women is the best birth control! Get a degree; not a stroller.
Agree. I'm appalled now when I see families with 5 & 6 kids. It's selfish. 
Oh, yes, selfish. That's exactly how I feel when I've been up half the night taking care of sick kids or counseling a teen through a period of angst. Thankfully, my degree did not preclude me from investing in many strollers over the course of my life. I also loved the comments that referred to my large brood as a "litter." Awesome.

And, if it were not enough that people are apparently "appalled" when they see my big family, it appears as if some would like to see at least two of my children outright killed: 
Infanticide may offend our social senses rooted in 2000 years of Christianity, but if you look at cultures throughout history infanticide was largely accepted. The Greeks used to leave their disabled and retarded infants on a hill to die of exposure. 
 In case you, like my high school friend, believe great scientific minds like comedian Bill Maher, here and here is some food for thought about the overpopulation myth. 

I thought about all the pictures I post of my very large family on Facebook. I thought about all the funny statuses I post about life in a big family and about how "out there" I've put us. To know that one of my friends "liked" something that condemns who we are and what we're about made me feel exposed and vulnerable. 

Then I read this article about a mother and son who were jeered out of a movie theater last Christmas. The adult son, Max, is autistic and became frightened during the previews. He became loud and his mom was reminding him of movie theater rules and breaking out the coping tricks that have worked countless times before, when suddenly, the people next to them turned and demanded that she quiet him. She tried to explain, but they would have none of it and when others joined in, she and Max made a hasty exit. The theater erupted in applause and taunts. One of them, "He's retarded!" reverberated in her soul. After reading her blog post about the experience, an acquaintance from church rented out the theater so Max and others with special needs can have a safe place to view the new Muppet movie. 

I read the comments on that article, too. 

My stomach is still churning. 
Bottom line, there is no way for the audience to know what kind of issues he has, and if she would be able to calm him down. They saw a situation developing and reacted to it. Mom, on the other hand knew exactly what she was dealing with, but chose to take him to the movies, instead of waiting for the movie to be released on DVD.
whose to say her "coping" mechanisms would have worked that day? I have seen them fail in situations over and over. All the while the parent of the special kid is trying to keep calm themselves. Bring them to the movies theaters that do special days for those kids.
Clapping because a loud person leaves the theater isn’t cruel. Mom bringing Max there knowing he has a problem being quiet is.
I also know a paraplegic, But I wouldn't think of taking him swimming just so he can be like everyone else.
So "we" paying patrons that don't have a kid with a disability. That pay full price for our tickets. On our date night. Should put up with a loud and obnoxious person? Sorry, but no. The majority of people still out weighs those with issues that cant sit quietly and shut the heck up.
Nevermind that Max didn't actually disrupt the movie. Nevermind that Max's mom didn't even get a chance to employ the coping strategies that have worked in the past. Nevermind that no one simply notified the manager if they were bothered...because they didn't have time. Nevermind that the people in the theater loudly and rudely taunted and jeered him as they applauded his exit. 

According to the commenters, Max and his mom deserved what they got. They should have waited and rented the DVD or gone to a theater that does "special days for those kids." They should've remained isolated and alone or stayed with their own kind. 

Trust me. Staying isolated and alone is so tempting. Especially after getting a glimpse into the heart of your fellow man. In all honesty, it makes me want to hide, too.

I've always known there is ugly out there. People lose their inhibitions behind the anonymity of their computer screens. Apparently, they do under cover of darkness in movie theaters, too. They are free to show who they really are and say what they really think. 

So it begs the question. How many people, how many friends, smile at my family, LOL at my statuses, "like" my pictures, cheer for my boys... but secretly agree with the haters? 

There is nothing I can do about the fact that I have eight children. (Make no mistake. I would change nothing, given the chance. The zero population growth people can bite me.) 

But I have boys with special needs. One of them is very typical, although loud. We are working on that and he will learn the appropriate use of "inside voice." The other is anything but typical. He makes weird noises and vocalizations. He bangs his head on things. He is unpredictable. He thrusts his tongue. He has a strange fascination with shoes. 

Right now, he is small for his age and still cute. But he will get bigger and older and less cute. 

And he will make people uncomfortable. 

I worry that we will stay home and watch DVDs and hide him...because that's what people want us to do. 

I worry that all this advocacy that we do, all this blogging and networking and sharing stories about Down syndrome and disability, I worry that all of it is for nothing. That its only purpose is to make ourselves feel better. To make us feel as if we are accomplishing something. To think that somehow, through our efforts, we can make the world less ugly. 

I worry that people are only humoring us. I worry that those that are smiling are doing so out of relief that they aren't saddled with a kid like ours. I worry that we are pitied for the life that we have chosen. I worry that, for all our exposing ourselves, no one really sees the truth. 

The truth is we are abundantly blessed to have these boys. We delight in the different they bring to our lives. They teach us to slow down and celebrate the small things. Because of them, we learn to weed out the unimportant, to embrace the best, and to breathe in the moment. We learn that we have more patience than we think we do...and then we dig deeper and find even more. They make us laugh and keep us young and give us gray hair, all at the same time. Life is rich and colorful with splashes of gray and scary thrown in for balance. It's more nuanced than it was before. 

And then I realize. 

Truth does not become less true simply because it is not acknowledged. People may not accept my boys, my lifestyle, or my family. They may not believe me when I say that life is good. But, their attitude toward my life doesn't diminish my truth. 

I still get to live it.

I know that we will encounter haters in life and some of them will not be hiding behind a computer screen. I can't live wondering if everyone I meet is on my side or not. I don't have the emotional energy for it. Honestly, most days, it really doesn't matter.

So yesterday, on World Down Syndrome Day, I wore my crazy socks and proudly paraded one of my boys around when he came to deliver blue and yellow cupcakes to my work friends. 

And I tried not to wonder if my smiling co-workers are really haters in disguise.

Monday, March 10, 2014

An Apology

I need to apologize. 

In my last post, An Open Letter to Matt Walsh, I made an assumption. Nevermind that I simply parroted an assumption that Matt made first. 

I wrote:

It is very probable that if a business refused to serve someone who is gay or someone based on their color, word would spread and that business wouldn't last long. 

I fully believed that to be true when I wrote it. It seemed ludicrous to me to think otherwise. In my very straight, very white world I believe the best of people because I've never experienced anything different. 

My reasoning was as follows:

I would stand up for someone who was mistreated based on skin color or sexual identity, therefore everyone would. 

I have seen black people and gay people treated fairly, therefore they are always treated fairly. 

It wasn't until someone commented on my post and used my faulty logic back on me that my eyes were opened to what I had done. 

There are some you tube videos of diners standing up for an autistic child. It was an experiment done. The answers may surprise you, but public sentiment may actually be on the side of the disabled.

I scoffed when I read it. "Oh, a you tube video? Well there's proof right there against the myth of discrimination! Let's completely disregard the experiences of people who are actually living it, and throw out the law."

This person assumed that public sentiment might actually be on the side of the disabled because of something they saw. They have no idea what it is like to live with disability, day in and day out. 

And then it hit me.

I have no idea what life is like in someone else's shoes, either. 

My assumption was based on the idea that discrimination against certain groups is so frowned upon by the general public that it doesn't actually happen that much anymore. 

Yeah, I know. (Did I mention my world is very straight and very white?) 

I cannot pretend to know that a business owner would be shut down for discriminating against a gay person or someone of color. I cannot pretend to know anything, really, about either group because I don't live it. 

These are shoes in which I have not walked. 

So, I apologize for my assumptions. I'm sorry I presented them as fact. 

Feel free to comment and share your experiences. Let me try on your shoes, if only for a moment. 

Thursday, March 6, 2014

An Open Letter to Matt Walsh

Dear Matt,

Can I call you Matt? I feel like I can. I've been reading your blog for awhile now. So many of your posts make me want to stand up and cheer. One of my favorites was I've been divorced four times, but homosexuals are the ones destroying marriage. That was brilliant and I was so glad somebody finally said it out loud. Your recent posts on marriage and public schools have been laudable, as well.

Last night, I was catching up and I read your post about letting businesses refuse services to anyone at any time. Honestly, it resonated with me and I read it to my husband, too. I'm all for making the government smaller. My husband was a small business owner for several years. Autonomy in business decisions was important to him during that time.

I admit to an initial hesitation about what could go wrong with that idea. But then I read your example of a business owner hanging a sign stating "no blacks allowed". You said the market would punish him, and he would be out of business by Wednesday. It made perfect sense. Of course. No one would stand for such behavior in this day and age. 

It sounds so reasonable. It is very probable that if a business refused to serve someone who is gay or someone based on their color, word would spread and that business wouldn't last long. 

But I'm a mother of two young sons with special needs and something kept niggling in the back of my mind. I'm not very quick on my feet. Ideas need time to percolate for me. The more I think about your post, the more certain I am that I cannot agree with you, this time. 

You said, "Don't worry. I've heard every outrageous hypothetical." Well, I can't help but lay another one on you. Only I don't think it's outrageous, at all. In fact, I think it's highly probable. 

Let's pretend there was a young man with a cognitive disability and some physical limitations that make it difficult for him to control his movements. He is having dinner with his family in a local restaurant. Not wanting to disturb the other patrons, the family requests a table in the back, but are seated in the middle of the room, instead. The young man uses a bib and is doing the best he can with the spoon, but is making a colossal mess with his dinner. As food particles fall back out of his mouth, other diners can't help but notice as he also talks loudly and his garbled speech draws attention. Someone complains and, in the middle of the meal, the owner of the establishment orders the server to box up the remainder of the family's food and rudely tells them people like their son are not welcome in his restaurant. 

The family is angry, to be sure, but mostly they are profoundly embarrassed and overwhelmingly tired, as this is just the latest in a long line of injustices. 

Unlike in your example, though, the market will not take care of this business owner. The other patrons are simply... relieved. They had been uncomfortable witnessing the young man with special needs and it is a much more pleasant dining experience without him in their visual field. 

You said:
The social movement — not any bureaucratic decree — is what heralded in the era of racial equality. The lunch counters at Woolworths weren’t desegregated by law; they were desegregated in 1960 when courageous young black Americans staged a sit-in. The Montgomery Bus Boycott marked the beginning of the end of segregation on busses [sic], and that had nothing to do with any law or governmental initiative.
Society gave us civil rights. People. Private individuals. Marches. Protests. Sit-ins. Civil disobedience. The tide was turned by free people; the government simply rode the wave. And, in so doing, they caused more problems than they solved. As usual.

You know what gave rights to people with disabilities, Matt? The law. The tide was turned by the law. Parents, self-advocates, and professionals came together and advocated tirelessly to have the law changed to allow people with disabilities included in civil rights legislation. And it was a long and hard-fought battle. Public sentiment was not on their side. 

It still isn't. 

The law is what allows that young man to have dinner out with his family. The law is what allows my friend, a wheelchair user, access into businesses to do her shopping. The law is what will allow my son to go to kindergarten and be included with his peers next year. 

It's The Americans with Disabilities Act, and not a tide of free people, that ensures these individuals can live without discrimination.

See, there are still segments of the population that do need to be protected. I've been to countries without laws to protect them and I didn't see a soul with a disability. I know why. People with disabilities are hidden away. Babies with special needs are abandoned and left to rot in institutions. How can a parent keep them knowing they would be ostracized everywhere they went?

Without laws to govern behavior toward those with disabilities, life would be infinitely harder for them than it already is. Public sentiment is not behind us, still. If you have any doubt about that you need only look at the wrongful birth law suits or the high rates of termination for Down syndrome pregnancies. Society does not want to be bothered with imperfection. It certainly doesn't want to make accommodations for it, or interact with it, or dine with it.  

People don't want to see my friend, Andrea, feed her daughter through a tube in a diner any more than they want their "genius" five-year-old to be slowed down by my son with a cognitive disability in the classroom. They don't want to have to bypass a handicapped parking spot nor do business owners want to be inconvenienced by putting in a ramp for wheelchair users.

But Andrea's daughter has a right to be fed with the rest of her family. My son has a right to be educated alongside his typical peers. Wheelchair users have a right to accessibility. I assure you these rights will not be "taken care of by private individuals," as you assert. 

People don't care. 

Oh, sure. People with special needs are good for inspiration porn. We'll put them on a meme with some kind of positive quote or elect them prom king to make ourselves feel good. 
But we don't really care about the underdog. 

We care about our own rights, or perceived rights. The extensive history of exclusion and discrimination against those with disabilities is proof of that. The pervasiveness of the r-word is proof of it, too. 

People with disabilities need the law to protect them from discrimination. I wish, with everything that is in me, that they did not. I wish that they could be seen as equals, as peers, as fully human. I really believe, for the sake of my boys, that one day it will happen. We in the disability community are working hard to make that a reality. 

But until then, all we have is the law.

And the law does not allow a business owner to refuse service to my sons. 

And, I'm sorry, Matt, but for that I cannot be anything but grateful. 


Tara Lakes

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.