Together, We Are Legion

You may not be that familiar with us. You may not even notice when you see us in “your” space. Or, it could be that you resent us taking up space at all. You might be one who sees us with genuine curiosity, wishing to know us better, but unsure how to bridge the divide. Or perhaps, you view us with suspicion, worried we exist simply to take something that belongs to you…your property, your privilege, or your “rights.”

Who are we?

We are members of the disability community, people of color, LGBTQ, and immigrants. Some of us are simply their allies – those determined to make sure they have a voice and that it is heard, determined to find them a place at the table.

Collectively, we are the other.

Some of us met in metaphorical Holland, a place we never planned to even visit, let alone linger. But it’s there we became more aware of the others. That’s when we understood that our exclusion was theirs, too. Our lived isolation was being replicated by other groups. Discrimination is something we’ve all encountered and we all share. Our uniqueness, our different, precludes us from having equality. We are rarely heard or really seen, and when we are, our message is too often filtered through a lens of your privilege.

Maybe we make you uncomfortable. When we speak up, our accents are too thick, our speech unintelligible, or our words too piercing. We upset the status quo. You tell us if we would just follow directions (given by people like you), everything would be fine and we could all go back to “normal.” If we would just stop making waves and settle down, we wouldn’t get arrested, or hurt, or killed. If we would only fit in the box you made for us, we could rise above.

You keep reminding us that good people don’t have health problems. Good people work within the system. Good people don’t need any help. They simply work hard to get ahead.

What you don’t realize from the inside of your box, is that we don’t fit in it. And the system does not work for the many on the outside, goodness be damned. Those living here on the outside disagree on much, but we are united in this: all people have intrinsic value, deserve equality, and desire acceptance.

We may have started out in Holland, but we are coming home. Beware America. We are coming for you. Your status quo is no longer safe. The bubble you have long floated in will burst. We will shatter your box. You who are living under a thin veneer of perceived return to greatness, where you have all the power and are without challenge, are in for an awakening. We will cower no more. We refuse to be further silenced.

And, rather than feeling threatened or intimidated by our presence, you should connect with us. You never know when you might one day need us. While your country of origin, your color, and your sexuality are pretty well set, disability can happen at any moment and knock the wind out of your sails.

We strongly believe that Injustice anywhere is a threat to justice everywhere. (Dr. Martin Luther King Jr.) Allies are always welcome. Won’t you join us?

Separately, we are minorities, but together, we are legion.

handsofcolor

 

Open Letter to Trump Supporters

Dear Donald Trump Supporters,

Your candidate has publicly mocked a reporter with a disability (Nov 25, 2015.) He has denigrated women loudly and openly (pigs, dogs, disgusting, grotesque, fat, ugly, bimbo.) He said we should build institutions for people with mental illnesses (Face the Nation, Jan 3, 2016.)

One man’s opinions and actions matter little to me except that he has followers like you, a lot of you, apparently. In interviews and polls, your reasons for backing him usually boil down to, “He tells it like it is,” so I have to believe you agree with him on these points and deem his behavior desirable.

And that terrifies me. 

As a woman with a mental illness (generalized anxiety/panic disorder) and the mother of two boys with disabilities, I always knew there were haters out there. I follow social media and read the comments on internet articles and have seen hate and ignorance spewed about on a daily basis.

I am acutely aware there are those convinced that people with mental illnesses are dangerous and a threat, when the opposite is actually true and we are much more likely to be victims of violent crimes.

I know misogyny abounds even today and women are considered a punchline, a sexual object, or even a punching bag.

Most distressful to me, however, is the mockery of people like my boys, or worse, the opinion that their lives are not worth living and they shouldn’t even exist at all. These boys love life, they have intrinsic value and worth, and they have my heart.

This is not about politics for me. This is real life. No matter what happens in the Primaries or come November, I’m afraid now and feel unsafe in my own community.

See, I used to think all those people with all those opinions about my life were just internet trolls who maybe lived in their mother’s basements.

Until your candidate became wildly popular and you began following him, I had no idea I worked with those people, went to church with them, and even invited them to my home.  And, frankly I don’t know what to do with that.

Because while you appear to treat me normally, you support Trump because “he says what everyone is thinking” so I have to believe you think it’s okay for men to treat me with disdain or for me to be institutionalized. While you smile and pat my boys on the head, in your mind, it matters not that people bully, ostracize, and mock them.

Your support of Mr. Trump frightens me, not necessarily because of what it means for the future of this country, but because of what it means for the present. The reality is my world is not as safe and good as I once thought it to be. My neighbors, co-workers, and friends are not the people I presumed them to be.

I now understand, that while you may not intend to hurt me or my family, you would do nothing to stop it were we to be harmed in the name of straight talk, or change to the political system, or “making America great again.”

I know this because you’re allowing it to happen now.

You’re part of a cultural shift in which people who are not like you are maligned, threatened, and sometimes physically tossed about for being different or expressing different opinions. You may not actually be doing the threatening or the tossing, but you’re endorsing it.

Your true character, the core of who you are, is now exposed and to be honest, I’m a little afraid of you.

I’ve allowed my vulnerabilities to seep through in our past interactions. I’ve shown you my hand. My gender was obvious, but you also know of my struggles with anxiety and panic. You know the joys and challenges I’ve faced raising children with special needs and the uphill road ahead of them as adults with cognitive disabilities.

How long before you prey upon those weaknesses or allow others to do the same? 

To you, this may be just about politics, but to me, your support of Mr. Trump paints a picture of who you actually are.

And that makes me kind of sad, and scares me more than a little. 

Erecting my own wall around myself and family,

A fellow American

 

Freaking Out and Doing Nothing

It shouldn’t be this hard. I’m ranting now and emotional and frustrated. This is not the time for rational thought and yet, I know that what I’m thinking is truth.

It shouldn’t be this hard! 

Educating our kids should not be so blasted difficult. I wrote a post here about our struggles to get Eon fully included in first grade this school year. I wrote about observing the first grade teacher’s classroom and talking to her about inclusion and peer modeling. She was totally on board with including Eon and had gone out of her way already to establish relationship with him so he’d feel ready to be in her class. His kindergarten teacher who was so perfect for him last year spoke very highly of her. We were ready.

Until the automated email I received right before dinner this evening, one week before the start of school, telling me Eon would be in a different teacher’s class. I hastily sent an email to the principal asking her if it was a mistake. Nope. Mrs. Fabulous had changed grades. Eon would indeed be in the other teacher’s class.

This new teacher is known to us already. She substituted for a few months during his regular teacher’s maternity leave last year. Eon loved her. She had zero expectations for him and basically treated him like a mascot. The work assigned to him was crap. The work he did in her class was crap. He got gold stars all the time for behavior and she raved about how wonderful he is. But she expected nothing but cuteness from him. He was happy to oblige.

He is not there for cute.

I feel like I worked my butt off last year to get the optimal plan in place for my boy. It was going to be a great year. One email and it is up in smoke!

So now what?!? There are other teachers at that grade level, of course, but I don’t know the first thing about them. Do we stick with the nice, inexperienced (overwhelmed), ableist teacher who may be willing to learn, or do we insist on changing and risk ending up with a teacher who is resistive to inclusion, making the year miserable for all of us?

And how the hell should I know?!? I’ve already been through this once over this very same flipping school year!!!

—————————— I wrote the above over a week ago. I chose to publish it because it shows how quickly well-crafted, hard-won plans can go out the window for our kids with special needs. I didn’t sleep well that night.

Life with special needs is consistent in it’s inconsistency. Whether it’s an educational turn of events or the return of a medical issue once thought conquered, this journey is rarely stable. I laughably find myself waiting for “things to settle down” sometimes forgetting how unlikely that is to even occur, let alone remain.

The trick is to roll with the punches, to be flexible, to have grace in the moment, to not freak out. Clearly, I have that mastered. Sigh. I feel like I used to be more flexible than I am now. Maybe there are only so many punches you can take? Maybe after you get so bruised you just fall down with the lightest of hits.

I admit it’s the other extreme at times, too. Maybe there’s only so much polite sparring you are willing to do before you just go for the sucker punch to end it. (Or maybe, I should actually watch boxing once in awhile before I put these metaphors in my posts?)

Whatever. My point is, I’m not handling the ups and downs well and I know why. I could blame it on lack of support. I tend to isolate myself when I feel stressed which is pretty much all the time, so I haven’t been reaching out to my local tribe of friends. Recently, I lost a great group of supportive online friends with my views shared in this post, in a mutual parting of ways. Support that used to be just a few key strokes away is suddenly not an option.

I could blame it on my terrible self care. My diet is atrocious. This afternoon, while perusing the menu at Panera, I briefly wondered, “When is the last time I ate a vegetable?” I couldn’t remember, so I ordered a salad I didn’t eat. My sweet husband installed a weight bench with equipment down the hall so I could conveniently work out without excuse. It makes a great table for folding clothes. I’ve had a gift card for a massage in my top drawer for months, but I’m filled with anxiety just thinking about making the appointment. I’m a mess.

I could blame the busyness that life with a big family brings or the lousy Indiana weather this summer or the fact that I can’t slow down the racing clock no matter how hard I try. But the truth is, none of these is the actual problem.

I don’t run to my Savior in the storm. I try to walk on the water alone, to battle the waves on my own strength, until soon my head slips beneath. I was never meant to face this life that is beyond me, alone.

Yes, I am the vine; you are the branches. Those who remain in me, and I in them, will produce much fruit. For apart from me you can do nothing. John 15:5

Nothing. Nothing productive, nothing of value, nothing helpful. I waste so much time apart from Him. I do nothing.

——————————— After emailing back and forth, our principal called me Friday morning. I had shared with her last year my thoughts on the substitute teacher. Before I could say anything, she assured me that she’d spoken to her specifically about Eon. “I’m not sure I used the word ‘mascot’ but I think I probably did because it did a good job conveying how you felt he was treated.” She convinced me that the teacher, while inexperienced, is very talented and willing to learn. Together, she was sure we could turn her ableist mindset around.

In the end, we decided to stick with the inexperienced teacher who really likes him, hoping we can train her to teach him. When I told Eon who his teacher will be, he pumped his fist and exclaimed, “YES!” He may be a lazy kid, but he’s smart.

She has since communicated with me several times and is very enthusiastic and on board with our approach for him. He has loved the first few days of school. If I can remember where to turn when things go awry, I think it will be a good year.

Self Contained Classrooms: The Nursing Home Restraints of 2015

In our recent IEP snafu with Eon, I discussed his case with several people I’m close to who work in school systems. Some of them were very supportive of our push for inclusion and some of them were not. Those that were not met me with great resistance at every turn. All the research I brought up was scoffed at with “real world” examples of inclusion failures and negativity. They attempted to convince me that full-inclusion is an impossible goal, even though so many parents have fought for it successfully before me to the benefit of their children.

In the face of years of research, schools that have successfully implemented inclusion, and other countries that have gone before to mandate inclusion as default, most school systems and staff continue to insist that it’s impossible and will never work. Parents who push for inclusion and demand what is lawfully the education their child deserves are labeled “difficult” and “unrealistic”.

And it all seems so familiar – the resistance to change, the insistence on old ways contrary to all evidence, the negativity.

Suddenly, I remembered. I worked in long term care facilities, nursing homes, during college and all through occupational therapy school. At the time, if a resident had a fall, history of falls, or was at risk of falling, he was restrained in his wheelchair in some way, usually tied in with a posy belt or vest to keep him seated so he would not fall and hurt himself. posybelttieIn the eighties, research became prevalent showing that physical restraints of residents didn’t actually prevent falls as assumed and actually increased injury, as well as decreasing quality of life. At the time, at least 40% of nursing home residents had a physical restraint, although some estimate the numbers to be as high as 70%. In 1987, the Nursing Home Reform Act (OBRA ’87) was passed guaranteeing nursing home residents the right to be free from chemical or physical restraints imposed for the purpose of discipline or convenience.

BUT, in light of the new law, nothing changed. 

Companies/facilities were made aware of the law and most educated their staff on possible alternatives to restraints and restraint reduction. But then when a resident fell, the first response was to tie them down. Because the law was not enforced, any other option was rarely discussed.

In 1990, federal regulations mandated restraint reduction policies in all long term care facilities with enforcement. The uproar was deafening. Even though all caregivers had been educated on alternatives to physical restraints, staff could/would not think outside the box of the way it was always done. Over and over I heard nurse managers and therapists bemoan how this new program would “never work”, “falls are going to increase,” “residents are going to get hurt,” “we don’t have enough staff to watch these people!”

I sat in a meeting and listened when, so ingrained was the old way, no one could come up with any possible alternative to a restraint after a fall. Silence reigned as they “brainstormed” solutions. When someone finally suggested a toileting schedule as the fall had occurred when the resident was taking himself to the bathroom, they were met with a chorus of why that wouldn’t work even as it was documented as the intervention of choice.

But it did work. And twenty-five years later, less than 5% of nursing home residents are restrained with no increase in falls and lower incidence of serious injury. I sit in meetings now after a resident falls and no one even mentions restraint as an intervention. It would never occur to them to do so. In fact, when I recently had a resident for whom a self-releasing belt might have actually been appropriate as a very short-term solution, no one thought to suggest it.

So when school staff members tell me that inclusion “doesn’t work,” I don’t believe them. I know from experience that old ways die hard and change is painfully slow in coming. I know that staff members, no matter how well-meaning, are people, and people don’t like change. The known is comfortable. We always default to the known. The familiar is easier.

But easy is not better.

One of Eon’s special ed teachers was new this year. She admitted that she was taught from an inclusion perspective in college and even did a research paper on it while student teaching last year. This year, one year into her teaching career, she’d already been brainwashed by the system enough to suggest he be taken out of full-inclusion where he was thriving and placed half days in a resource room for next year. Why? Basically, because that’s how they do it at that school.

Thinking outside the box often takes external motivation. Without the feds enforcing the OBRA ’87, nursing home residents would still be tied down. Nursing home administrations and staff didn’t stop that barbaric practice because of the compelling research, or a change of heart. They didn’t stop because of outraged family members. (Families didn’t protest, because they believed the staff knew best. Sound familiar?)

No, they changed their practice only under threat of losing federal funding.

And it begs the question. Is IDEA enough? We have the law on our side, although plenty of school systems are making us prove it by taking us through due process. Is it enough that some of us are willing to fight for our kids on an individual basis? Will we ever see real change this way? Or, twenty-five years from now, will another mom blogger be writing a post on the frustrations of getting her first grader included in general education?

I don’t think it is enough. I don’t think real change will happen until we see legislation and enforcement of legislation (aka, the loss of federal funding) making inclusion the default placement with adjustments from there, if necessary. Money talks and, frankly, it’s the only language school systems are forced to obey.

Please note: I, of all moms, recognize inclusion is not the right setting for every child. My other son, Bo, will start kindergarten next year in a self-contained classroom which is where he will thrive. But, inclusion should start out on the table at the IEP. We shouldn’t have to push to even get it in the room.

Self-contained classrooms, like nursing home restraints, should be the exception, not the rule.

I’m Tired of Holland and I Want to Go Home`

One of the first things presented to us after the birth of Eon was Emily Perl Kingsley’s famed essay, Welcome to Holland. I was touched by the sentiment, but never a huge fan of the piece. Basically, it likens having a baby with special needs to planning a special trip to Italy, and then being diverted to Holland forever. It acknowledges the grief associated with the change in plans, but points out that Holland, while not Italy, has its own unique beauty.

I hadn’t thought about the Holland analogy in years until a friend who’s getting ready to adopt a baby with Down syndrome re-posted it in her blog. It, of course, caused me to reflect.

Eon was healthy. He’s also number six of our eight children, so we were pretty seasoned as parents. We didn’t really experience the grief so many do when they embark on this journey. We entered Holland and immediately moved to the peaceful and beautiful countryside to skip among the tulips. Sure, there was the occasional language or cultural barrier to navigate, but it wasn’t anything we couldn’t handle and I was more than prepared to take it all head on.

Fast forward a few years and we added Bo into the mix. Still dealing with the known Down syndrome, but also tacking on autism, chronic health problems, and adoption issues. And, with Eon getting older, we now have to fight the IEP battles to make sure his educational needs are being met. Also, did you know that mothers of children with autism have stress levels equivalent to soldiers in combat? 

I feel as if we moved from the placid countryside of Holland into the capital city and right into the heart of gang wars. (My apologies to the actual country of Holland. I have no idea if you even have gangs.)

I’m tired. No, scratch that. I’m exhausted. I don’t want to learn more of the language, or suffer from the loneliness of not fitting in, or eat foods foreign to me. I don’t want to walk about and listen to people jabbering in another tongue. I don’t want to shield my children from enemy fire. I don’t want to duck and run for cover or cower every time I hear a loud noise.

I’m tired of Holland and I want to go home.

I long for the familiar, the comfortable, the easy. I miss the days of doing things without thought. I want to take my boys to normalcy.

bogradI hate that I have to know the Individuals with Disabilities Education Act in its entirety just to make sure my sons are afforded the educational environment that is lawfully due them. It frustrates me to have to spend hours in research prepping for a new specialist appointment to ensure the doctor orders the correct tests and medications or to point him in the right direction of the likely diagnosis. The adrenaline surge experienced every time an older child exits the house and the alarm sounds leaves me in a constant state of high alert, terrified that this may be the time Bo escapes with tragic results.

I wish I could trust anyone besides his ever-busy oldest siblings to watch the Serb, and even then, I wish it were for longer than an hour or two if during waking hours. (And still my constant checking in drives them batty.) I, selfishly I suppose, want to go to weddings and parties with my handsome husband instead of the carefully planned divide and conquer routine we’ve orchestrated for social engagements. I’m tired of packing a diaper bag when my youngest is a typically-developing, fully potty-trained four-year-old.

I hate that I freak out over every green snotty nose wondering if my weekend plans are safe or if I should go ahead and pack a hospital bag, just in case. I’m frustrated when my son tries five times to tell me something and I hear the same unintelligible sound five times and I just don’t understand and he gives up and whatever was important to him at the time stays with him and our moment to connect is lost.

But mostly, I’m tired of interpreting our world to others who don’t live here. It literally pains me to feel my boys have been devalued, either by a stupid social media comment, rude stare at the grocery, or casual remark by a close friend. I hate feeling like I have to be positive all the time or someone may not understand that, while my life is hard, I would choose these boys a hundred times over. eonpool

Holland sucks, sometimes. Yes, Emily Pearl Kingsley, it does have windmills, but where do you find the time to look up and enjoy them?

I have a choice to make. Sometimes daily, sometimes just when I hear the bullets flying and I find myself ducking for cover, longing for the good old days of home. I can wallow in the hard. I can live in the frustration and the difficult, becoming bitter.

Or I can embrace the adventure of a life uncommonly lived. I can relish in my daily opportunities for growth and new experiences. I can be overwhelmed with the beauty of relationships I have that others pass by. There is community among the ex-pats of metaphorical Holland. The marginalized have a camaraderie all our own.

If I hadn’t landed here, I would still be living in my fishbowl of sameness, loving all the people who live and think like me. I would never have learned the stories of my fellow sojourners, come to value their perspectives, share their pain. I’ve found that it’s not just the parents of kids with special needs who land here. This Holland is a home to not just those with a physical or intellectual disability, but also people of color, or those with mental illness, even the LGBT community, any of us who are different than the accepted masses.

Because there is a place for us here. 

So, in the middle of my longing for normalcy, for what I remember home to feel like, do I really want to give up all I’ve gained, all I’ve learned, all I’ve become?

Not really. For I’ve discovered the true melting pot is Holland and here there is grace for us all.

The IEP

A year ago, I walked into Eon’s kindergarten transition (IEP) meeting loaded for bear. We wanted full inclusion for our son and we weren’t leaving until we got it. We didn’t realize until near the end of the meeting that inclusion was the plan and had been their plan for him all along. I left the meeting like a deflated balloon, slightly dazed and confused, but relieved.

It was a great year. My biggest fear was that his teacher would resent having him in her classroom and be harsh with him or, conversely, she would love him, but have low expectations for him and treat him like a mascot. Neither happened. His teacher was amazing and just perfect for him! She treated him as she did all the other kids in her classroom and expected him to behave as such, and he did. She adored him, but was immune to his charms when he attempted to manipulate her to get out of doing hard work. In short, she had his number. Eonbeach

He thrived. He is a beginning reader (reading!), is doing simple addition and subtraction problems, knows all his shapes, can tell us all the parts of a story, etc. He got himself off the bus and to his class like a boss, hung his backpack, circled his lunch menu, put his folder in the teacher’s basket, and started his seat work every morning.

We received nothing but good reports. So this year, I was a relaxed mama walking into the IEP meeting. And for forty-five minutes we heard about all the progress he made toward his IEP goals, how well he fit in with his typical classmates, how good his behavior was, what a joy he was to teach, etc. After every member of the team said their piece and filed out, I was stunned to hear the recommendation from the mild special education teacher who was running the meeting.

“So, we want to pull him out for the reading and math blocks next year and take him to the resource room so he can focus on his goals in there.” She continued talking and, as she added up the time with therapies pulling out, she divulged he would be gone from the general education classroom about 50% of his day.

What the what?

I sat there like a deer in headlights with a phony-try-not-to-cry smile pasted on my face. I managed to ask what the reasoning was and it was basically because “First grade is intense and moves really fast. He won’t be able to keep up or stay on grade level. This way, he’ll be able to focus on his goals in a small group setting.”

I did not object. I felt bushwhacked and completely unprepared. We were not asked to sign it because PT still needed to complete her goals. I would not have anyway. That much I knew. I cried the rest of the day.

And then I got busy and brushed up on my knowledge of IDEA. Turns out, a child cannot be moved to a more restricted environment (aka, resource room or self-contained classroom) solely based on his inability to maintain grade level. He doesn’t have to maintain grade level. That’s why he has an IEP! He only has to make progress toward those goals. Which he clearly was…in an inclusive setting.

I called the mild special ed teacher the following week. I apologized for not speaking up in the meeting and told her about our misgivings. I laid out our vision for Eon and inclusion. I told her about the law and asked that we reconvene. I asked to observe the first grade classroom prior to the meeting. She agreed to all of it but again told me she thought he’d do “better working on his goals in the resource room.” I asked her for research to back up claims that children make more progress in self-contained classrooms or resource rooms. On the face of it, it sounds good and seems to make sense, but I’m only seeing research that supports inclusion for desired outcomes. She is a new teacher and told me that she actually did a whole research project/paper last year supporting inclusion and didn’t have anything to give me to contradict it.

I continued to cry much of the week (my singular response to stress of any kind) and continued to research and make sure I knew his rights under the law. I was frustrated that I needed to know all that, frankly. Good golly, we’ve got enough on our plates, for crying out loud, without having to school the school system on their legal responsibilities toward educating our child.

I agonized over whether this was the right decision for Eon. I know the research supports inclusion for the outcomes we desire for him – increased independence as an adult, improved odds for secondary education, increased chance for meaningful work as an adult – but if this school doesn’t really believe in inclusion, the school year could be a disaster.

Basically, I pushed and then second-guessed myself for pushing the rest of the week. By the time I went to observe the first grade class, I was an emotional basket case. Thankfully, when I waffled on my inclusive resolve to the mild special ed teacher, she wouldn’t hear of it. She reminded me, “He can always go into more restrictive if he needs to, but there’s no reason to start his year there.” Eon’s first grade teacher for next year was equally as wonderful and fully supportive. She’s a firm believer in peer-modeling and reminds me a lot of his kindergarten teacher.

The next day, we reconvened the IEP. I was very clear this time in sharing our vision that Eon be included throughout his school career. I reminded them that in our current culture, a person can be successful in life if they get along well with others, even if they’re not the sharpest tool in the shed. The major way Eon is going to learn to read people, to experience community, to develop empathy, to reciprocate socially is by being with his peers. Everyone was on the same inclusive page. We added in supports to ensure his success. We discussed plans to modify his curriculum and tests. We discussed ways we plan to communicate and trouble-shoot issues as they arise. His team was wonderful! It was very positive and affirming.  And I breathed a big sigh of relief…and didn’t cry.

I want to emphasize that while I am a huge believer that inclusion is absolutely the right placement for EON, I am a bigger believer that every parent and team needs to decide the right placement for their individual child. I am amazed and appalled at the internal bickering I see among those in our Down syndrome community, especially when other parents want to use their own choice as a blanket decision for all children with Down syndrome. We are talking about Individual Education Plans. 

I have two boys with Down syndrome who are as different in personality, preference, and ability as night and day. The only things they have in common are a last name and an extra chromosome. Eon will be attending first grade, fully included, in a general education classroom next year. BobeachHis brother, Bo, will be attend kindergarten in another elementary school in a self-contained classroom. Those are the right placements for both boys and they will excel in their own ways. We couldn’t be more proud of each of them. To put either child in the other setting would be a grave mistake and such a disservice to that child.

We need to trust each other as parents that we’re doing the best we can for our kids. We need to recognize that none of us has a crystal ball but each of us would kill for one to know the best decision in every situation for our precious kids. If someone seeks your knowledge or advice, they are not giving you decisive power into their lives. Don’t take it personally if they choose to make a different decision. You don’t have all the information and you certainly don’t have the relationship, the love, and the guilt they do in parenting that child.

For those of you facing the IEP, you can do it. There is grace for that.

Autism Lives Here

Autism sucks. I know that’s not the party line. Today is Autism Awareness Day and I’m supposed to be sharing non-scary facts and anecdotal tidbits to take the edge off the scary diagnosis and reassure people. To be clear, people with autism are all kinds of awesome, as are most people.

autismawareness

But autism? I am not a fan.

It’s weird. My son with autism also has Down syndrome, as does his brother. I’m a huge cheerleader for all things Down syndrome. I have Down syndrome jewelry, clothing, and bumper stickers. I pre-plan blog posts to commemorate Ds advocacy days. I didn’t even know about Autism Awareness Day today until somebody tagged me on Facebook.

Honestly? Down syndrome is easy. It has a known cause, for one thing (an extra chromosome). There are physical characteristics that make it recognizable to others (which is good and bad.) When your baby is born with it, there is a plan of action. I know Down syndrome. I can do Down syndrome.

Autism is sneaky. We don’t know where it comes from. There are about a million different things to try that might make it better – diets and oils and exercises, etc. Everyone has an opinion about them, but very little scientific evidence to back it up. No way to keep your sanity and try them all.

Down syndrome seems to be a wonderful part of who my boys are. Autism seems to be a thief determined to steal my boy away.

It’s the great disruptor, spiriting away the peace in my home. It causes intense frustration for the boy who has it and the family who loves him. It causes him to act out in ways that seem beyond any of our control, including his.

World Down Syndrome Day was March 21st. That day included cupcakes and kisses and celebration. Today, April 2, Autism Awareness Day included pinches and broken nail polish bottles and an early bedtime. Maybe one day I’ll be ready to celebrate autism.

Today is not that day.

Coveting Freedom

I turned off the computer and went to bed, completely green with envy. Sleep wouldn’t come. One of my friends was jetting off to an exotic land on a missions trip with her daughter, and another on a tropical romantic get-away with her husband. Proof in pictures for both displayed on Facebook. I couldn’t stand to think about it, but could think of nothing else.

My discontent had been brewing for weeks.

While I adore these children God has entrusted me with, there is no denying that the special needs life can be trying. I had been focusing only on the trials.

Recently, the radio station I listen to has been encouraging listeners to call in to win a trip. Always up for a contest, I reached for my phone the first time it was announced. As I punched in the number, I suddenly stopped as awareness swept over me. I hit end call, instead. Even if we won a trip, we couldn’t go. There is no one who could watch Bo for an extended time.

The realization was a bitter pill. I felt stuck.

I ruminated on it every time the contest was announced. Discontent breeds discontent and soon I was wallowing in other frustrations.

I’ve long been a critic of how the majority of churches handle disability and special needs. Mostly my sense of justice wells up for other families as we’ve managed to figure it out in our own. How we’ve made it work lately is the “divide and conquer” method, meaning, I attend church (usually alone) on Saturday nights and then stay home with Bo while UpcycleDaddy takes the rest of the crew on Sunday mornings. I feel isolated with this system, but at least not spiritually shriveled like I did when I just stayed home all the time, so it works. Except when I am sick or injured and can’t watch Bo, like yesterday, and the entire family has to miss church, all because there is no place there for our son with special needs. Then I get angry and frustrated all over again.

Then there’s the driver and the aide on the special needs school bus who feel the need to tell me every single time they see me that my son’s behavior is less than stellar and sometimes he spits or throws his hat to the back of the bus, as if I have any control whatsoever over his behavior when he is not in my presence. “Frankly, ladies, I can’t keep him from spitting when he’s in my own car! I have no clue what you expect me to do about it,” I want to scream at them, but instead I smile sweetly and say, “Yep. He can be a stinker.”

Or what about the family vacation planned that is getting nearer? Unlike last year, I’m determined to limit panic attacks and to increase sleep. To that end, I’m shopping for a pup tent for Bo to sleep in to keep him contained as he wandered the house at all hours last year. He couldn’t figure out the lock to escape to the beach, but we didn’t know if the skill would suddenly emerge and whenever I did fall asleep, I had nightmares of him being claimed by the waves. We are also investing in stick-on door alarms. The entire family is looking forward to this trip with the lone exception of me, who can only conjure up fear of the dark hours, not knowing if my tricks to keep him safe will work.

So glimpsing the apparent carefree travel of my friends was my undoing. Watching them just fly away unfettered and pursue adventure, left me dealing with the sin of covetousness. I called it what it was there in the dark as I was trying to sleep. I knew perfectly well that I was breaking one of the Ten Commandments with my envy. But I didn’t know how not to covet in that moment. So I whispered:

God, this is not who I want to be. I want to be the encourager, the one who rejoices when her friends rejoice. Your Word says that you will make a way of escape when we are tempted. Forgive me for being covetous of their freedom and their opportunities. Show me a way out of this. Change my heart.

And then I slept.

Until about 2:30 a.m. when the incessant banging of the boy woke both of us up. Have I mentioned that Bo doesn’t sleep much? He slept the first two months of this year and then resumed old habits. We don’t know why he started sleeping and we don’t know why he stopped. It’s maddening. He thumps much of the night. We know him well and can interpret the thumping. There’s the soft, rhythmic thud, thud, thud that tells us he’s rocking his “Moochie cow” and banging his head on the padding we have covering the walls around his bed, and would be irritated if we interrupted. This wasn’t that. This was the loud, insistent kicking the wall between the padding letting us know that he needed something. This time it was a drink. After UpcycleDaddy got him a cup and went back to sleep, I listened to him settle into the other thump he does so well, the “I-don’t-need-anything-but-I’m-awake-and-you-should-be-too” banging. I let it go for about an hour. Finally, I brought him into bed with me. No reason everyone should be awake.

As soon as I climbed into bed after him, he snuggled in close, with his head on my chest and his leg around my middle. He started grinding his teeth, so I lightly stroked his face and he stopped. Soon his breathing deepened and he was sound asleep.

There, in the quiet of the night, listening to him breathe, I was overwhelmed with emotion – love, certainly, for this little one who accepts me so fully as his own; sadness, a little, that I wasn’t there to do this for him those early years, that no one was; but mostly gratitude, that this is the life I was given. Tears rolled down my cheeks as I prayed again, this time with thankfulness and joy. I get to mother this boy. I was sent to do this! What an adventure I am living just in that!

I’m so happy for my friends. Given the opportunity, I would totally jet off to a romantic island or a mission adventure. But that is not my life right now. And my life is good! I so needed the reminder.

And tears of gratitude, too, that even in my ugliness, in my jealousy and self-pity, there is sweetness and gentle redemption. God draws near, gives me eyes to see, and changes my heart. He shows me there is grace even for that.

About Church Criticism

Someone linked this Open Letter to All the People Writing (And Sharing) Open Letters About What’s Wrong with The Church on Facebook and received a lot of positive feedback. I read it and it irritated me. Probably because, while not a Millennial, I am among those who “liked” the original letters to which the author refers and may have even shared them.

She makes some excellent points and her intent is to spur us on to stick it out and to share our frustration with the leadership in our local church and not spew it all over social media. I get that. And, I agree with her that some of the criticism is petty. But, much of it is born out of pain and confusion. A lot of it is spot on. The American church can’t just cop a “suck it up” attitude and tell people to deal. That mentality has left bleeding believers in her wake and scabbed over church members struggling to keep the phony smiles plastered on their faces while they go about business as usual.

Acting like we’ve got it going on when clearly we don’t is unhelpful.

To be clear, I think it needs to be pointed out the author appears confused about what The Church is. Jesus absolutely loves The Church, His Bride, the universal Body of Believers, His followers. I don’t believe, however, that He is as enamored with “the church”, little “c”, as in the American way we choose to worship Him on Sunday mornings, which is what is being criticized in these types of articles.

That church is failing. We are failing our members and we are failing the world. With a divorce rate nearly as high as those outside our doors, and college students leaving the faith in droves, we’re not doing a great job inside. When people feel the need to take their woes to social media because they are not being heard, when expressing any sort of doubt or unrest is frowned upon, and when they so desperately feel the need to connect beyond our walls, all is not well.

When twenty percent of Americans have a disability and yet, rarely is even one person with a disability an active part of any congregation, there is a problem. Let that sink in. If you attend a fairly large congregation, you may be able to think of a few people there who have disabilities, but do their numbers even begin to approach twenty percent?!? Where are those people? Not in church because they feel unwelcome there. It is often physically inaccessible as churches are exempt from the ADA requirements of other public buildings. Or, they are required to sit in a section not of their choosing, away from family and friends. Often, it is emotionally and spiritually crushing as they may hear things from the pulpit like, “It saddens me to see people with disabilities in our church, it is a reminder that we do not have enough faith.”

I cannot tell you how many times we’ve been told we should visit the local mega church with the awesome special needs program. We are blessed that there is one near us. I realize that. And, from all accounts, it is awesome. But it is also eleven miles away. According to Google Maps, there are at least thirty-one churches in a five-mile radius of our house. Given the church’s pro-life stance, we should be able to walk into any of them and be welcomed and comfortable with children who have special needs. I dream of the day that is reality. Today is not that day and kids like mine and their families are being ignored and worse, rejected.

When there is a church on every corner and still over 100,000 children available for adoption via foster care, something is clearly wrong. James 1:27 tells us that true religion is caring for orphans and yet, most states can’t even find enough foster parents and the system is over-run. While not my experience, many adoptive parents tell me that their biggest critics during their adoptions were fellow church members or even pastoral staff. Post-adoption support is little understood and mostly non-existent and families who struggle after an adoption feel isolated and lost.

These are just a few of the myriad of problems the American church is barely acknowledging. The author appears to not want anyone to have hurt feelings, herself included, over church criticism, but sometimes, truth hurts and it is through strong emotions that change is effected. She wants us to settle down and not post on social media, but often, reading someone else’s words can stir something in our own hearts and resonate in our own souls and spur us to action.

It is time that we rectify the wrongs in our church culture.

Injustice is occurring in and all around the American church. I don’t think Jesus, the one who drove the money changers from the temple, is upset with us for calling it out. I think He’s upset that someone had to in the first place.