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. 

Sincerely,

Tara Lakes

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. 

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. 

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. 

The Pregnancy Scare

I learned something about myself today. I like to think of myself as sure, as confident, as immune to the stares and whispers of others. You can't live as counter-cultural as we do and have a thin skin. Just driving the fifteen-passenger van to the grocery store and watching people count the car seats would do you in. I use humor to deflect a lot of the criticism and most of the time, it bounces off.

But, today I realized what a complete wimp I really am. 

You see, today we had a pregnancy scare. I, or rather Shawn, did some calculating this morning and realized that I was days late. It wasn't until late this afternoon, one negative test, and a monthly visitor later, that we found we were in the clear. I was relieved, and a bit puzzled by my reaction. 

You see, when the possibility of a pregnancy existed, I wasn't upset about having another baby. Clearly, children are welcome here. I wasn't even that upset about another pregnancy, although they are hard on me and I generally loathe them. I certainly wasn't worried about my advanced maternal age and the associated risks of Down syndrome. In fact, that didn't cross my mind until just now. 

No, I was scared of what people would say. 

I could hear the whispers, the not-so-gentle teasing, the exclamatory cries of shock, and the words of admonition and warning from all of those around me, but specifically those at work. Frankly, it is sometimes fun to tell new patients when they ask how many children I have, and sometimes, I grit my teeth and avoid the question altogether. But it's easier when the family is already made. I know from experience that people feel much freer to comment when the newest member has not yet arrived. 

I found myself feeling ill at the thought of answering, "Is this your first?" multiple times a day, or worse, hearing one of my many co-workers answer it for me, "No, it's her ninth! She already has EIGHT!" And then having to paste on a phony smile and defend my family. Egads. 

It gives new meaning to the term "pregnancy scare" when what you're really scared of is not the pregnancy, but other people. 

So let me just say for the record, children are welcome here. Do not be surprised if another one joins this family at some point. Most probably that will be via adoption, but if God chooses to bless us another way, I will just have to dust off my phony smile, put on my big girl panties, and ignore the whispers. Because I refuse to let fear of other people rob the joy of new life. 

But God...

Setting off on our adoption journey, we were sure that we would be rescuing a child from one of those awful institutions we heard so much about. In fact, when we found out that Bogdan was in foster care, I felt almost guilty, like maybe his need wasn't great enough to warrant all the fundraising that we needed to do to bring him home. But we knew that God had a plan and that he was supposed to be ours.

On our first visit, our translator informed us that the social workers and foster family were already discussing which child would replace him. That gave me some measure of comfort and I often wondered about that child, who they were and where they came from.
I never thought I'd actually know anything. 

But God...

My friend, Leah, who was instrumental in leading us to our Bo and helping us navigate the world of Serbian adoption, is going back a fourth and final time to adopt a child with Down syndrome, this time a girl. 

Through the miracle of Facebook, I recently reconnected with Bogdan's foster family and received a whole bunch of early pictures of him. Wanting to share the wealth, I connected them with Leah who had also adopted a child from their home. 

In looking through their posted FB pictures, Leah made a marvelous discovery: Her new daughter, "J", is a foster child in their home! Through Google Translate, Leah was able to chat with them and discovered that "J" was the child that replaced Bo. She came from one of the worst mental institutes in the country and was in terrible shape when she arrived at their house. Even now, at 9-years-old, she weighs the same as our tiny 4-year-old Bo, thirty pounds. She needs to come home.

God didn't have to do that. He didn't have to fill that spot with a child in such dire need, a child that likely would not have survived much longer where she was. He didn't have to lead my friend to that particular child. And He certainly didn't have to put all the pieces together so I could see the tiny part we played in His grand scheme. I am so humbled and overwhelmed by it all. 

And excited!

There is a mad rush to this adoption. On April first, Serbia becomes a Hague certified country. Leah found out THIS MORNING that the adoption must be COMPLETE by then!

Funds are a priority. She does not have the luxury of waiting for her tax refund or creative fundraisers. She needs money NOW! The dossier needs to be shipped and translated, airfare needs to be purchased, etc. Be part of this amazing tapestry that God is weaving before our very eyes! Here is the GoFundMe page. 

Give a little, give a lot, but just GIVE!

And let's see what else God has in store...

Pox Parties

I want to say this with humility and grace. A day or two ago, I wanted to come on here and say it with guns blazing. That's the problem with being a justice girl. Everything is black and white and when an injustice is perceived, there is little inclination to consider all sides. 

In this instance, I took some time. 

Twice this past week, from two different people in two different circles, the idea of a pox party was brought to my attention. I admit, the concept was not entirely new to me. We are a homeschooling family, after all, and homeschoolers, for whatever reason, often tend to be of a crunchy bent. I never really paid attention to the idea of it before. It wasn't something that was on my radar. 

For the uninitiated, let me explain. A pox party is when the parent of a child with an active case of chickenpox alerts non-vaccinating parents so that they can get their kids together in hopes that those who have not yet had chickenpox will get infected. The idea is to have their children get this childhood illness over early and develop the natural immunity that comes with it. There are countless Facebook groups dedicated to connecting these families. 

As one who contracted chickenpox at the ripe old age of twenty-three from a patient who had shingles, I do like the idea of getting it as a child better. I had pox in every possible orifice, including down my throat and inside of my ears. I have never been so miserable and I have birthed seven children, some of them without medication and have had giant kidney stones on multiple occasions. But, I digress.

There is a vaccine for chickenpox. Many, many people had chickenpox as children and it was not a big deal. Those people roll their eyes and think the government has gone a little loopy and it is just one more unnecessary medical intervention and, of course, it's all about the money. And they may be right. It certainly is not a disease that comes anywhere near polio. However, before the chickenpox vaccine, 100 to 150 American children died yearly of chickenpox. One in 400 children were hospitalized, many with neurological conditions such as encephalitis, meningitis, convulsions, and even strokes. Within six years of the varicella vaccine being licensed, hospitalizations related to the infection dropped by 75%. Does the vaccine pose a risk? Of course. Every medical intervention has risks. But the risks and reported side affects of this particular vaccine are generally minor. 

Talking you into the vaccine, however, is not the point of this post. I think the reason it was on my radar and prompted this post when pox parties came up this time, is that now I have spent time in the world of special needs. I've walked the halls of the children's hospitals so many times, they feel like a second home, and I have healthy kids. But so many of my fellow parents on this journey do not. Many of them have children who are immunosuppressed. Their immune systems are not functioning as they should and they are at greater risk of developing illnesses.

Those children do not have the luxury of getting the vaccine that others are choosing to decline. What is a simple childhood illness for your child, can be a death sentence for them. 

A person is contagious for 1 - 2 days before the onset of the rash until the lesions have crusted over. A person usually contracts the illness between 10 - 21 days after exposure. In other words, a child could come down with chickenpox on average anytime between one and a half to three weeks after a pox party and will be contagious for a day or two before they know they have it.

So, here's my question for those of you who plan to send your kids to a pox party. 

Are you willing to keep them at home for up to two weeks while they may be contagious?

Because while the parents of those immunosuppressed children I talked about are less likely to have their kids out in public, sometimes it's unavoidable. One chance encounter with your infected child in the produce aisle could be the death of another child. 

I'm not being dramatic. Those 100 to 150 children who died each year from chickenpox before the varicella vaccine generally had underlying medical conditions, conditions that caused them to be immunosuppressed. Conditions that allowed a simple, normal, childhood illness to take their hope, their future, and their very last breath. 

See, you are free to choose. Vaccinate, don't vaccinate, partially vaccinate. Whatever. These parents don't have that luxury. They are counting on herd immunity for the life of their child. And if not that, then they are counting on common sense and decency from fellow parents. 

Recognize that these children exist, that they are fragile, and they are precious to those that love them, just as your children are to you. If you do choose to expose your children to a childhood illness, please keep them home until the risk of spreading it has passed.