All kinds of brains invited.

Archive for March, 2016

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…

8 Things To Consider Before Filing For Due Process

Originally published on the amazing blog Think Inclusive, here is our story about what due process was like for us. I look forward to the day when kids are no longer segregated and due process is a distant memory, something that people “used to do, back in the day, before inclusion.” If you have not visited Think Inclusive, it is full of great information about how to make inclusion work.

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2010 – We would never be the kind of parents to go to due process.

Gage was three, freshly diagnosed with ASD and attending a preschool autism program which we thought was excellent. We were not very familiar with “the system” yet, but we loved the teacher and the very supportive principal, who had a special ed background.  Things were looking pretty rosy for Gage as he steadily gained more skills. Eight months in, we started hearing whispers about a family in the same program that wasn’t so happy. They were the furthest thing from happy, in fact. They were going to something called “due process”. We had no idea what it was, but people told us it was akin to suing the school because it isn’t doing its job right. There were also whispers that these parents were delusional about their child’s abilities, that they just didn’t want to accept their child’s limitations, and that they were sue happy—trying to get services out of the school district that their child didn’t deserve! My husband and I didn’t understand. Having volunteered in the classroom, I couldn’t see what the school had done incorrectly. Knowing the teacher and the principal, we couldn’t understand how anyone could accuse them of not following an IEP. We felt terrible for the school team. And we felt bad for the family, too; we heard that they had been banned from the school. One thing we knew for sure—we would never be the kind of parents who would go to due process. We were not lawsuit people and didn’t even know any lawyers. If we ever had differences, we would find a way to work them out. Due process for us? No way!

2012 – The inclusionists and the segregationists.

Gage was five. The principal with the special ed background? The one who had a plan to include Gage in gen-ed? She got a promotion. The autism program teacher, whom we loved? She went out on medical leave. We hadn’t worked out the details of Gage’s inclusion in his IEP, because we knew our great teacher and inclusive principal would just make it work. Big mistake. And on top of that, the gen-ed teacher to whom Gage had been assigned… well, let’s just say that she presumed anything but competence when it came to Gage. The new principal, not having a special ed background, called in our area special ed supervisor when we wanted to meet about formulating a better plan for including Gage in a gen-ed classroom. This supervisor, sadly for us, was an old-school, dyed-in-the-wool special education segregationist. There was no way that Gage was going to be included under her watch.

We started asking for an IEP revision in the fall, and were put off, and put off, and put off again. Finally, in December, we wrote a formal letter requesting an IEP.  We also contacted an attorney, just to run our story by him, because it just didn’t seem right that they had put us off for that long. Our lawyer agreed and offered his services to help us get things back on track. Finally, it was scheduled for February—a whole six months into the school year! Six months of opportunity, gone. When we did have the IEP revision, our one big goal was for Gage to be prepared to be included for 1st grade. We had lost six months of valuable time for him to prepare, and we needed some intense measures to make up for that time so he could still make the transition successfully. The segregationist did not agree. The path she was proposing led straight to a self-contained program at a different school, away from the local school that Gage had attended since age three, away from his siblings and neighbors, away from everything that he knew. We took a deep breath, and in two signatures that said we disagreed, we became THOSE parents. We were going to due process. It was not what we wanted, but we felt we had no choice. We believed in our son. We would fight for his rights!

The next few months were very sad for us. No one from Gage’s classroom talked to us. We were temporarily banned from entering the school. I was the room mom for my older son’s class and was told by the office staff that I was not allowed to go to Griffin’s classroom or to be on campus. My husband was not allowed to come meet Griffin for lunch (nowhere near Gage’s room!). We complained and after a few days the school returned our call.  It was deemed “an unfortunate mistake,” and they made an apology. We had a feeling it wasn’t a mistake at all, but at the time, we were just relieved to be allowed back on campus.

The resolution meeting was awful. Everything “wrong” with our son was amplified and exaggerated by those who didn’t presume competence and seemed to be following theories about autism from the 1980’s: Make them appear normal like us before they get any academics! Not typical = bad! Life skills all the way, baby, potential for learning be damned! Still, we were not giving up on our son. We held strong, feeling fortunate to have a legal team who familiarized us with the IDEA and let us know how antiquated the special ed policies were in our district. They introduced us to the works of people like Lou Brown and Wayne Sailor, who both knew of our case and stood behind us. I found a Facebook page called “I Stand With Henry” and saw everything that Henry had been through to be included. Henry’s school district had put him through the ringer, and he still fought them courageously, at age 13!  Henry was the example of courage we were looking for. If Henry could stand up against the system for his civil rights, so could we.

Our district asked us if we wanted a public hearing. We said yes. We knew they were wrong to segregate disabled people and presume incompetence, and we wanted everyone to know it. We were set to go to hearing the last week of school (a whole school year wasted!).  The stress on our family was high, and we wondered if we were now the ones being whispered about as delusional and unaccepting of our son’s actual potential. We were heartbroken that they seemed to be throwing the still-on-medical leave autism teacher under the bus. They blamed her for the mess. We never did. We knew it was our district’s outdated policies and system we were up against. Then, a week before we were set to go to hearing, a short email came. A deal had been made. There would be no hearing. Gage would be included in first grade—100% gen-ed with full support. We were angry that Gage’s entire kindergarten year had been wasted but so relieved that he was finally going to get the chance he deserved.

2014 – Gage surprised everyone.

Gage is now seven. First grade is over. It was phenomenal. Gage had a teacher who presumed competence, an aide who had just the right touch, and a class full of awesome kids who accepted Gage just as he is, hair twirling and all. I think they learned as much from him as he did from them. I was the room mom (I couldn’t believe I was allowed to do it after everything we had been through) and for me, every day was teacher appreciation day. I was so grateful that Gage was being treated in the way he was. I did everything I could to make sure the teacher was supported. Gage was awesome! He surprised everyone by not being the big problem they had presented him to be in all of the meetings. After the first day, the teacher said to me, “He did great. I think he can do this.” “That’s what we have been trying to tell everyone,” I said, “That’s why we ended up in due process.”

Our IEP this year was still a tough one. The segregationists (who luckily aren’t at Gage’s school much) still want to segregate Gage. They spent a great deal of money on an “expert” saying that Gage belongs in “a special place”. Instead of supporting Gage and his team, they spent a lot of the school year collecting data that only focused on Gage’s deficits, and ignored the fact that he was passing 5 out of 6 classes, choosing instead to focus on his “autistic behavior” of… hair twirling and poor eye contact. As the segregationists read the expert’s report for 3 hours about why Gage needed to be sent away from his school and community, we mentally prepared to go to due process again. We were deflated and felt like all of Gage’s success and the team’s work might be for nothing.

And then an amazing thing happened. That principal, the one who didn’t have a special ed background and called in the segregationists? She said that Gage would stay. That he would be included in 2nd grade and supported again. They had seen Gage for who he was, they had seen that he had potential, and they were keeping him!

We could not be more grateful that we did not have to go to due process again this year. It was stressful for us and everyone else involved, I am sure. We can only hope that we never have to go through it again. It is dehumanizing to sit there and argue with professional educators who think your child is less and does not deserve his basic civil rights. It is gut-wrenching that they just want to throw your kid away. I cried more than once at home, and once during the resolution meeting, too. However, the result we have seen from fighting for Gage to be included has been tremendous. Gage is being prepared to be a fully included member of society. That is the path he is on now. He is learning to interact with neurotypicals, and they are learning to interact with him. His inclusion is invaluable. His inclusion is his right. His inclusion is helping everyone, not just Gage.

So was going to due process hard? Yes, it was.

Was it worth it? Yes, it was.

Would I do it again? Absolutely. Because Gage deserves nothing less than equal rights. All of our kids do.

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My advice for anyone thinking of filing for due process:

Get the help of a lawyer who specializes in special education. An advocate or parent mentor can be a great help in your actual IEP or resolution meeting, but IDEA says that in the actual due process hearing, only an attorney, or yourself without an advocate, can represent you. Look for legal aid in your area, who will often help pro bono. If you make too much money to qualify, most special education attorneys charge a reasonable amount and will likely put you on a payment plan.

Be prepared to have a lot less communication from your child’s classroom. This should NOT affect your ability to enter the school, for instance, if you are volunteering in another child’s class. However, for some reason, the school may think that you will be engaging in discovery for your due process hearing, and you need to be kept away from your child’s classroom and team. This is usually not the case. It is most likely you probably have all of the evidence you think you need before filing. But be ready for this, anyway.

Remember that the teacher and the school team are not necessarily against you, but they may not have the ability to provide the kind of accommodations that your child needs. By going to due process, you are forcing the district to provide the support that the school would like but may not have the budget to provide. Inclusion doesn’t work without well-thought-out accommodations and the right supports. If you need to fight to make sure the teacher and student are properly supported so everyone can succeed, do it. It is hard, but it is best for everyone to have the right supports

Due process should be a last resort. It is not a fun process and will certainly cause stress. Do everything you can to work with the school to come to a good solution. Sometimes, however, schools just to not have the resources they need to work with you, or are not willing to follow IDEA because “that’s not the way we have done it in the past,” or they are just plain unaware of what IDEA says and so don’t realize they are breaking the law. In these cases, for the sake of equality, you need to help them learn IDEA just a little bit better.

Get support. Seek out people who have been through the process before through advocacy groups and social media. You may feel like you are all alone if you are the only “problem” parent or student at your school. You aren’t!

Don’t be afraid. Due process is just a process. As emotionally difficult as it was for us, it was worth it. If your child is being denied basic civil rights, basic human rights, or being treated as “less”, and you can’t come to a reasonable solution with the school—go! Fight for your kid. They deserve nothing less.

Just because you’re the “problem” parent or student, doesn’t mean you’re wrong. Disability laws have been slowly changing in the past few decades because of “problem” students, self-advocates, and parents just like us.

Don’t stop once you have what you want. Keep supporting the teacher and the school. Make sure that they know that you are just as invested in education as they are. You are an important part of the team, so don’t quit when the due process is over. Inclusion works so much better when everyone works together.

– See more at: http://www.thinkinclusive.us/8-things-to-consider-before-filing-for-due-process/?utm_content=bufferc3481&utm_medium=social&utm_source=facebook.com&utm_campaign=buffer#sthash.eiVc7YXZ.u6JzjQsi.dpuf