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

 

My Target Bathroom Experience

Today, I needed some stuff from the store. I managed to escape the house without children and drove to our local Meijer store here in Greenwood, Indiana. I sat in the parking lot and began making a list on my phone when I received a Facebook notification. That’s all it took before I was completely distracted and scrolling through Facebook in my car, oblivious to the world around me, or my purpose for being at the store in the first place. (Welcome to ADD…Squirrel!)

I came across a post by one of my friends promoting a pledge by the American Family Association to boycott Target stores because of their new inclusive bathroom policies. It’s been signed by over a million people. It reminded me that I’d read something about protests outside Target stores on this date.

I started my car, left Meijer, and drove to my nearest Target. No protesters. Dang it. I was slightly deflated that I didn’t get to cross a picket line.  I shopped…and shopped…and shopped. Did I mention I didn’t have any children with me? As I headed toward the Market section of the store to complete my list, the inevitable happened.

I needed to use the bathroom.

Dare I? Was it safe? Weren’t there men in there dressed as women lurking in the stalls just waiting to attack or, at the very least, peer at my nether regions? Oh, wait. This is Target. They don’t even have to dress as women! 

Cautiously, I approached. I saw several men go into and come out of the Men’s restroom. None of them even glanced at the door to the Women’s. I walked closer to the doors.

A mother and her young daughter went into the Women’s restroom before me and into a stall. I went into another stall and locked the door. They did their business. I did mine.20160604_114021 Other people came and went. Toilets flushed. Sinks turned on and off. I came out of my stall and washed my hands. Another lady was there and laughed as I waved my hand under the non-automatic paper towel dispenser, stating she did the same thing. At least I think she was a biological female. She could have been a transgender female. I have no idea. Nor do I care. We did our business, exchanged pleasantries, and returned to our shopping.

I used a Target bathroom and I was unharmed. I lived to tell the tale.

You can, too. 

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.

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.