All kinds of brains invited.

Archive for the ‘inclusion’ Category

Jumping off the cliff.

So there we were, in 2015, living very comfortably in Henderson, Nevada. Gordon was liking his job. The kids were doing well in school. Gage, who needs more help, was lined up with 3 hours of tutoring after school every day, fabulous teachers and tutors, social club on the weekends, services and grants from the state of Nevada that we had waited years to get, and lots of friends in our community who knew and loved him. We had season passes to a waterpark that all the kids loved, a Target only a mile away, and all of the things that make people with kids happy and comfortable in the suburbs. But best of all was our school.

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Our school in Nevada. We fought to stay there. It was a school worth fighting for.

After going through the misery of due process getting Gage included at school (totally worth it but still so unpleasant), Gage’s school had more than risen to the occasion. The principal that a year before had sat across from us in mediation and listened while Gage’s kindergarten teacher campaigned against him was now one of Gage’s biggest supporters. She had seen inclusion work with her own eyes, and would have done anything to help Gage keep succeeding. (I still get weepy thinking about it. I have a lot of love for that woman. Maybe that’s a whole new blog post…) 2nd grade was going pretty well for Gage, too. And even better, he was set to have Griffin’s 3rd grade teacher the next year, whom I consider to be one of the best teachers I have ever met, and who had also worked with kids on the spectrum (and also, Griffin!). Even better, Griffin’s 4th grade teacher was doing a remarkable job including different kids in her class, too. Things were looking great for Gage, at least for the next few years. But still, we were dreading junior high. In a school district that fundamentally does not believe in or support inclusion, and that still employs as their go-to autism guru a man that believes that in order for someone like Gage to learn, the autism must be trained out of him like a dog, Gage was not safe. Away from our enlightened elementary school, we would need to get ready to fight for Gage’s right to be treated as 100% human once again.

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Gage’s class yearbook, complete with comments from his classmates.

Fully included. Fully accepted.

 

Gordon and I had lived abroad for many years before having kids enticed us home. Gordon had started traveling young. His mother claims his first language was Indonesian because that is where he was when learning to speak. She had to teach to the pre-school teachers in California the Indonesian words for “bathroom”, “hurt”, and “hungry” so they would understand Gordon’s needs. She also had to explain to them that Gordon was afraid of white people, since he hadn’t been around many. He went on to live in a few different countries, following his father’s engineering job, before finally returning to the U.S. for college, and then moving to London. I spent the 12 years between graduating college and having kids traveling. I had initially gone abroad for University and decided I felt more at home on the road. I’ll take a “just a year” off to travel before I go down the career path, I thought. I worked and traveled all over Europe, Asia, and Australia before deciding to “settle down” and take work as a flight attendant. This sent me back to London, too. Gordon and I took long walks through the city, enjoying the architecture, the pubs, and the people. We moved back to the states as our jobs wouldn’t accommodate parenting the way we wanted to, but we always missed being abroad.

When Griffin was 4, Gage was 2, and Gibson was a wee infant, Gordon was offered a job in Singapore. We were so excited. And then, within a month, it was confirmed that that Gage was autistic. Autism related services and attitudes about disability in Singapore seemed bleak. We had to do what was best for Gage. We stayed in Nevada. As Gage improved more and more through extra help and inclusion, and we realized that autism was not as horrible as Autism Speaks had made it out to be, we talked more and more about the possibility of going abroad again, should an opportunity arise. “Just wait,” I asked “until Gage has finished elementary school. He is doing well there. Just let him finish. Then we can look.”

Last February, Gordon came home with an interesting offer: a company transfer and a promotion to go to their Bahamas location. The Bahamas? We had not even known they had a location there. We researched and contemplated. We could not come up with a good reason to turn it down. We did love our school, but we also feared that after elementary school, Gage would no longer be safe at school. The autism guru that the Clark County School District employs is an older man who has built his whole career on the premise that autistic people cannot learn unless all autistic characteristics are suppressed, and they appear to be perfect (I would say “non-autistic” instead of “perfect”, but the non-autistic kids in Gage’s classes were allowed to do many of the things that Gage needed “modification” for. Somehow, it is ok to chew a pencil or have limited eye contact if you are 6 years old and not autistic, but if you are autistic, you need modification for these behaviors.)  So these “experts” spent many years at school trying to get Gage to stop twirling his hair, stop moving his hands, stop moving his feet, stop doing whatever it was he was doing that month that helped him keep calm and happy, before he could be taught any academics.  We advocated that he should be allowed to twirl his hair since he was passing his classes, but the “experts’ had disagreed, even asking us to pack extra food for Gage’s lunch so they could entice him to do what they wanted him to do by making him earn his lunch. The guru and his cronies had after all, worked at UCLA under the king of autistic torture, Ivar Lovass (and based on their ages, were probably the exact T.A.’s that had carried out some of this torture personally). For more information about how actual autists feel about Lovass and his methods, click here or here. So yes, in light of this attitude in our district, even though we loved the kids’ school, we decided we should go for it, and move to Nassau.

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Miracles do happen. We got our house cleaned out and made it to the airport in time for a last beautiful sunset in Las Vegas.

In the United States, federal law mandates that autistic kids receive services, and can stay in school or a school-like setting, until they are 21 years old. At this age, they lose all of their services and then have to go on waiting lists (sometimes years long) to be included in programs for adults. It is a huge problem, and will be an even bigger problem as the larger number of those that have been identified as autistic reach age 21. This is called “Falling of the cliff”. In deciding to go for it and move, we had just decided to jump off the cliff, 13 years early. For better of worse. We decided that we would be responsible for helping Gage get to his future place in life without all of the services we would get in the US. We knew that we could always return to the states and get on the waiting lists again. But maybe, just maybe, living in The Bahamas was just the thing to point Gage, and us, in a better direction. We had to take the chance.

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Farewell from above.

In the next 6 months, we sold, donated, or threw away the bulk of our possessions. All of our furniture, our cars, clothes, toys… everything. We got a small storage cube for our keepsakes, shipped a 6’x 6′ x 6′ cube to Nassau and checked the rest in 10 suitcases. As someone who was well on my way to having my own episode of “Hoarders”, it was both freeing and terrible. I still get a lump in my throat thinking about the feeling of loss as 10 years of possessions left our house one by one. We sold enough in our garage sales to pay for Gage to have an aide here for a year, and met some great people. But we also saw the ugly underbelly of Las Vegas bargain shoppers. I think we sold our bunkbeds to a meth dealer. He peeled the bills off of a thick roll of cash as he smiled at me showing off his dentist’s nightmare of a mouth. And a couple of scumbags walked off from our garage sale with hundreds of dollars of items.  In the end, we had a lot left that we gave to a family who had lost everything. And I did get to find out, after 8 years in Henderson, who my real friends were. (A friend who will help you move is a special person indeed.)

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Welcome to Nassau!

We landed in Nassau, shellshocked and exhausted, in August, and spend 2 lovely weeks recovering at The Atlantis before moving in to our home. Now, to find a school that would accept Gage without segregating him…

To be continued…

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.