All kinds of brains invited.

Archive for the ‘segregation’ 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…

Gage: A Kid Worth Educating, Even Though He Is Autistic

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April 12, 2013. A beautiful spring day that makes us thankful to live in Nevada right now. Griffin, our 7-year-old, is at school. Gage is home. Not because he is sick. Not because he is in trouble. Because he is autistic. Every other kindergartener in Gage’s class is allowed to go to school all day today. Everyone but Gage.

We have complained about this all year. But one Friday a month, the kids in the preschool autism class, the class that they have decided Gage should be in (even though he is kindergarten age, and can read and do math and do phonics) get a day off whether they want it or not. Most of these kids in this preschool autism program are 3 and 4, so in effect, they are missing a day of preschool. Not Gage. He is 5 (6 in June). Every other child in his kindergarten class (the age appropriate class for him that he gets to be in sometimes) is allowed to be educated all day. Everyone but Gage. Because he is autistic. And that kind of makes us angry that we live in Nevada right now. One hour away in California, or in Kansas or Wisconsin or North Carolina or almost any other state, a kid like Gage would get to go to school today. Because, unlike Nevada, some states don’t discriminate against autistic kids. They think autistic kids are worth educating. They give them (gasp) equal rights. Civil rights that they are entitled to. Almost like they are 100% human.

“But…” when we have the gall to ask that Gage be equally educated (or at the very least given the same amount of time as the other K students) they say “…Gage is autistic. He is in the autism class most of the day and there is no class that day. So he doesn’t get to go. He will still get his 80 minutes of time in kindergarten that we have decided that he gets, even if you disagree.”

“But…” we say “every other kindergartener gets to go to school all day. Gage deserves to go!”

“Too bad” they say.

When I posted a complaint about this on Facebook a few months ago, one of my friends who is an aide at Gage’s school, replied that she would stay all day with him, “If I were allowed.” What a load of ruckus that comment caused. It may be the first time in history that a Facebook post was brought up at an official meeting to decide a child’s educational future. The aide and I are not Facebook friends anymore. I didn’t want anyone scrutinizing her for being friends with me. But she was right — she could have stayed with him. It would have cost the school nothing. The aides, and the autism teacher, are paid to be at school that day. It is like an in-service day for them.

Would it be a big deal for one of them to accompany Gage to class? No, it would not. But they say no. Gage doesn’t get educated today. Gage gets to go to school at 7:50 and gets kicked to the curb 80 minutes later. We say he needs to be educated. He needs the same education as the others. But he doesn’t get it. Because he is autistic.