All kinds of brains invited.

Posts tagged ‘inclusion’

Kindergarten: The Year It Was, One Year Later

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First day of what was supposed to be an inclusive kindergarten year. We had such high hopes. 

I sat down to write about how wonderful first grade was for Gage, and realized that I had never really talked about how horrible kindergarten was for him, and us. And in order to understand just how great first grade was, to understand just how much we now love our school, you need to understand where we started, which was absolute zero.  It’s hard for me to write about, as I normally focus on the positive. In kindergarten, however, there wasn’t much positive going on…

 

Kindergarten was a complete disaster: Unqualified substitute teachers in the autism program; a poorly written IEP that had no plan to include Gage with typical peers on anything more than a token level; a ridiculously bigoted kindergarten teacher who sent weekly reports that deemed Gage “STILL AUTISTIC!”; a head of special ed that instructed her staff to collect only negative data to show that Gage should not be included the first time she ever met Gordon and me, and before she had ever met Gage; An eventual filing for due process — a process that began for us in November, when we knew that things were not going right, and ended for us in late May– just a week after the school situation had become so stressful I wished that our family would go over a cliff while on our annual Mother’s Day drive. Finally, we were presented with a much better plan for first grade, but still, a YEAR of education lost for Gage. A YEAR of dealing with ignorance and bigotry. A YEAR!

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On our Mother’s Day Trip: Six months after our initial complaints, six months of poor treatment, and my low point of the year. Luckily, the kids are as goofy as ever and unfazed.

And in that time, the emotional toll on Gordon and I was horrific. Active school volunteers in both our sons’ classrooms, we were banned from the school for 3 days before our complaints to the academic manager were heard, and it was admitted that a mistake had been made. Regular kindergarten events like the Halloween party, Christmas party, Valentine’s party, and graduation? We had to invite ourselves to attend. We had to ask permission if Gage could come, even though he had an aide and we would be there, too. Every other parent in kindergarten was allowed to go, all day if they wanted (this teacher liked parties). Gage was allowed to come for 30 minutes if the aide and we were there with him. We were openly mocked by her at meetings for asking that the daily snacks the autism substitute was now giving could be healthy. (“Well there sure won’t be healthy food at my parties!”) We asked for her curriculum so that we could teach Gage at home, since it was apparent he wasn’t getting much class time. She sent us an email in return stating that she would not provide the curriculum to us, because in her opinion, Gage would NEVER be able to do it, and she didn’t see the point. Kindergarten yearbook picture — Gage wasn’t included. Class picture? Nope, no Gage. And graduation? We were told that Gage could come for the 5 minutes that it would take to give him his certificate and snap a picture, because the teacher had not bothered to teach Gage (or give the words to us so that we could teach him) the songs the class would sing, or the words they would say.  He wasn’t even allowed to sit with the class, we were told. We crashed it. We lined up with the entering parents and grandparents and went for the whole thing anyway. Gage, his sister, and I sat in the front row of spectators and watched all of his cute classmates do cute Kindergarten things that Gage had been given no opportunity to learn. Since he had no idea what to do, I helped him get his certificate. It was a heartbreaking end to a heartbreaking year, but at least it was over.

The good news of the year was that Gage continued to be his wonderful self, to progress socially, emotionally, and academically. He never read all of the awful reports. He never knew that the teacher didn’t want him at her parties. That she didn’t feel he was worth teaching. He never knew of the special ed director’s plan to sabotage his inclusion. He never knew, and his classmates never knew. Gage was Gage, and the other kids were the other kids, and they went about the business of being 5 year olds, oblivious to the storm. They were cool with each other then, and a year later, they continue to be.

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 Last day of kindergarten! He made it to the ceremony, in spite of everything. 

We didn’t talk about kindergarten for a long time. Both because I was traumatized from it, and because we were afraid of “ruining” another family’s perfect image of their kindergarten year if they found out how awful the autistic kid in the class was being treated. I feel like it is far enough away now. Their memories of kindergarten, good or bad, are cemented. I am still in disbelief that a teacher, a school district, could treat children and families this way. I am still angry. I feel robbed of a year. But the anger has made me determined to do something about it. Nobody should have to put up with the kind of treatment we went through. No matter what their disability. I have been to 5 IEP meetings in the last month to help other families. And one mediation meeting, so far. For free. ALL of them asking for inclusion. I can’t change some people’s backwards ideas, but at least I can stand with these families and tell them that they are right. And I am finding, more and more, that the ignorant and bigoted attitudes like the one we had to deal with are few and far between. There are far more people willing to listen than I thought. Thankfully. Inclusion is coming to our district, one family at a time. The lightbulbs are going on, and the 80’s ideas of exclusion are being extinguished. One kid at a time. Starting with Gage.

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What We Didn’t Expect From Inclusion

When we asked (well, actually, insisted) that Gage be included in a gen-ed classroom, we expected that he would gain a lot of things from it: We expected that he would start to learn how to act in a gen-ed environment; we expected he would have many, many great peer models to help him learn the way; that he would start to learn how to take tests and complete classwork; to follow a schedule that wasn’t based on which child had the most intense needs at the time; we expected that he would start to build a platform of basic social skills upon which he could add more and more skills until one day he is able to be a productive and contributing member of society. We were fairly sure his classmates would be nice to him, because even though he was only allowed to be in the kindergarten classroom for 30 minutes a day last year, those kids were really nice.

What we were not expecting was someone like Iris.

Gage and Iris

I volunteer in the classroom every few weeks. I stay in the common area outside the class and the kids come out and read with me, one by one. They really highlight all of the things that are great about first graders — some shy, some confident, some boisterous, some perfectly behaved and some really trying to be. Most of them pretty funny, as six year olds can be. One of the more hilarious ones is Iris, who has more personality in her little pink fingernail than most people have in their whole bodies. As I got to know all of them, I felt so blessed that these were the kids who Gage was with all day, and so blessed that their teacher had set a tone of understanding, acceptance, and kindness (we really won the teacher lottery with her!). A few of them would always be there to meet Gage on the playground in the morning, including Iris. Pretty sweet.

Then, one day, a little note came home. It was from Iris’ mom.

“Hi there, Would it be possible for Gage to have a playdate with Iris? She has been asking for a playdate for about a month. Here is my number if you are interested…”

Was I interested????? Well of course I was. I mean, Gage had been invited to birthday parties before, but this was different. She wanted to play with him. Alone! She wanted to be…. his friend. I called the mom to set up a time, and tried to explain that if Iris could come for the last hour of Gage’s Saturday tutoring that his tutor could help with play skills to make sure that Gage played with her appropriately, and then she could stay for an hour of free play. And it would help Gage learn to play with peers and it would be great and so helpful to him. I said he wasn’t good at playing with peers and needed guidance until he learned.

This is where it gets good.

I don’t think it had occurred to Iris to tell her mom that Gage was autistic. It was sounding like maybe she didn’t know. When it became clear that Iris’ mom probably didn’t know, I tried to explain what Gage’s autism was like. She wasn’t put off at all. In fact, she wanted to know when they could reciprocate and have Gage over. I nearly dropped my phone.

On Saturday morning, Iris’ dad brought her over, armed with a Candyland game and a big smile. Gage and Iris played, they snacked, they read. Iris was in charge, and Gage was happy to do what she said. Gage, our sometimes solitary guy, wanted to hang out with her. The best part was when they picked out Mo Willems books and read to each other on the couch. They took turns. They alternated pages. And nobody had to use a token board to get Gage to do it. Our Saturday tutor was thrilled, and said that Iris could come back every week if she wanted to.

Reading some Mo Willems

When Iris’ dad came back, he came in for a bit. We watched the kids and chatted a bit, and I commented how neat I thought it was that Iris wasn’t phased by the autism. “We talked about it with Iris last night,” he said. “Iris said she thought that is just the way God made Gage. She said God made him special.”

God made Iris special, too. Hallelujah for that!

Accidentally, Iris left her Candyland game. When I texted her mom to ask how we could get it back to her, she said: “She will just pick it up at their next playdate.” (Got that? The next playdate!)

This inclusion thing just keeps getting better and better.

How We Dare

Three great kids who deserve to be treated equally!

Three great kids who deserve to be treated equally!

I have been getting a lot of emails lately. Nasty ones. That little picture we put up of Gage holding the sign saying that he deserved to go to school has reached over 2 million people so far, so of course you are going to get a whole spectrum of people who feel that they need to speak out against a 5-year-old boy being included in the public education system, and about us being terrible parents for using his picture to help demand it. If you have read any of the comments under the photo, I am sure you will know what they say. Mostly, they go a little like this:

“How DARE you! How dare you think that your disabled child belongs in a classroom with normal children. Your child belongs in a separate place with others of her (sic) kind. She will RUIN the education of the normal children. You are selfish and you are in denial! You are living in a dream world…..”

And that was one of the nicer ones.

How could people be so mean and make assumptions about a child they had never met? Did so many people not realize that autism is a spectrum and in most states autistic kids are included in mainstream classrooms? Do people still equate autism with people so dysfunctional that they need to be institutionalized? Why did people so vehemently attack our desire for Gage treated equally to the other children? I felt like I was indeed in a dream world, only it was one where I was living in the Jim Crow south and autism was the new black.

And then I realized — people must not really know what inclusion is. We sure didn’t before we started this journey with Gage. When Gordon and I first starting thinking about the idea of Gage being included, our biggest concerns were not for Gage. Our very first question was: “How will Gage being in a mainstream classroom affect the other children?” We wanted Gage to be included, but never at the expense of someone else. A friend pointed out to us the inclusion dynamic that had been present in our older son’s Kinder class 2 years earlier — there had been a few boys who could just not stay in their seats. They had a need for movement and they might have had some special needs (hey that sounds kind of like Gage!). Rather than punish them for not sitting, the teacher brilliantly just… let them stand, and move more, and be hyper as much as she could. Because she knew it would help them. It is called accommodation. Hmmm, we thought, that is right, those guys were very active, and did anyone in their K class NOT learn the alphabet or phonics or the calendar because of them. Did they RUIN anyone’s kindergarten education? Um, no. No they did not.

But Gage, we thought, he ‘s more than just a mover. He isn’t great at talking yet, and he certainly doesn’t do a lot of eye contact, he tenses up sometimes, he has a lot of input coming into his brain, all the time. How can they accommodate that? An aide, we were told. An aide. Just like kids who can’t walk need a wheelchair or kids who have poor vision need glasses, some kids with autism need a one on one aide. It is called accommodating a disability. And it is a normal practice in other states. Just not Nevada, apparently.

Then we started researching. We thought inclusion was right for Gage (remember he is not intellectually disabled or violent, and is generally a mellow guy) but we wanted evidence. We wanted to be sure that we were doing the right thing and wouldn’t be hurting the other children. We found articles, hundreds of them, that supported inclusion. We found scholarly research papers, books, interviews, lectures. We found out that this inclusion thing we had been thinking about was alive and well and working all over the country! And there were other crazy people like us! But they had letters after their names — letters like PhD, MS, MEd. People who’d been to a lot more school and thought about this a whole lot more than we had. People who thought inclusion was the best way to integrate people with disabilities into society so that they could lead productive and happy lives — and it didn’t stop there. We found a lot of research that said that everyone did better in school when children with disabilities were included. Everyone! (Yes, that means the “normal” kids too!) One source for this assertion: ‘Inclusion as Education Reform’, a research article by Caustin-Theoharis/Theoharis (2010), which shows that test scores improve for all students when all learners are included. Thanks to Lauri Hunt for bringing that one to our attention in her article: “Can You Have Inclusion Without Acceptance”.

We did, of course, look for the other side — the articles, lectures, and books about how horrible it is to include all kinds of different people. We wanted to know what the opposing arguments were. Could inclusion really be this one sided? We found a few mentions of the two big fears — Inclusion will ruin “normal” kids education (which has been disproven in many studies); and the big one… money. If inclusion is done correctly, it is supposed to be cost neutral to providing special schools and pull out programs. People are still afraid it will be too expensive though. To us, this is like being told that our child in a wheelchair can not be included because there is no budget for wheelchair ramps, or our child who doesn’t speak English needs to sit in a corner of the room and be ignored because ELL teachers are just too expensive. Who decides? Every child deserves an equal chance to learn and be included. Why can so many other programs be afforded and our child’s program can not? Who decides that he is not worth educating?

We also found some other interesting articles about how it was right to exclude people who are different. The one that struck me the most was an article about making people who were socially inferior be separated from those who were socially superior. It was an article about Plessy v. Ferguson. Remember that case? It was the one in 1896  (you might remember from your history books) that enshrined the concept of “separate but equal” racism until Brown v. Board of Education righted things in 1954. When I learned about those cases in 8th grade history, never, never, never did I think that I would be fighting the same fight, 117 years later, for my little boy who has trouble communicating. Truly, you can replace the word “black” in the Plessy v. Ferguson case with “autistic” and it is chilling. We are fighting the same fight, just with different fighters.

Jeff Sell, in an article for the Autism Society, explains inclusion in a nutshell:
Full inclusion is a set of strategies aimed at ensuring that all students, including students with significant impact of disability, are fully integrated into the general educational setting and have access to the general education curriculum. There are many positive effects of inclusion practices among both students with special needs as well as non-disabled students. Research has shown positive effects for children with disabilities in areas such as academic gains, improved communication and social skills, and increased positive peer interactions. Positive effects of inclusive educational settings among non-disabled youth include the development of positive attitudes and perceptions of persons with disabilities as well as improved scores on academic standardized tests. To meaningfully implement inclusion, however, teachers and administrators must be fully committed to the principles underlying inclusion practices, and also have the appropriate training, professional development and ongoing supports to successfully transform school environments.

That’s what we want. Exactly.