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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

Cupcakes and “Special Needs”

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To the Smith’s employee that helped me yesterday:

Thank you for helping me yesterday when I picked up my daughter’s birthday cupcakes. When you saw me walk up, you and your colleague immediately addressed me and said you would get a bakery clerk to help me. While your colleague went to find her, you looked in the walk-in refrigerator to see if you could find them yourself. You could not, and were very apologetic about it. Luckily I had plenty of time so was not stressed out about this at all, but I appreciated your concern. When a bakery worker did arrive a few minutes later, she got them right away. They were right there on the back counter with the other 6 dozen cupcakes that were ready for pick up. You clearly felt a little silly that they were so easy to find and you hadn’t seen them, so you apologized again. You said: “So sorry about that, I am a little special needs,” with a smile. If you remember me, you might remember what I calmly said back: “My special needs son would have found them right away.” I smiled, took my cupcakes and left politely, but I have been thinking about what you said since then.

So I am pretty sure that you aren’t special needs. Your customer service skills were great, you spoke clearly, made good eye contact, and seemed to have no physical issues. If you are indeed special needs, I applaud you for all of the hard work it must have taken to get to the place where you are clearly a good employee at a good company who has no apparent issues doing his job or speaking to people. As the parent of a special needs kid, I will be very proud when he attains all of the skills needed to do a job like yours.

But I am thinking, that maybe, you used “special needs” as a way to say, “I made a mistake” or “I feel stupid” or “doh!”. I am thinking that a few years ago you might have used “retarded” instead, and I am very pleased that you chose not to use that word, because we all know that the r-word hurts people. Thankfully, that campaign has been very successful. But I want you to know, other words can hurt people, too. Because when you say you are “a little special needs” as a way to describe yourself as someone who is feeling a little unintelligent for not seeing those cupcakes, what you are saying is that “special needs” people are unintelligent. That’s just not the case.

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My awesome kids. None of them deserve to be made fun of. Except for Gibson, maybe, because she just refuses to smile nicely in pictures. Which I think is both annoying and hilarious. (But only about the smiling thing, mind you.)

I will share with you a little bit about my 7 year old son Gage. He is far from unintelligent. He’s quite smart, actually. He taught himself to read at 2. He does grade level math. He is great at mazes and he is the only one in our house who truly understands the DVD player. Gage knows just what buttons to push on our broken microwave to heat up his soup. He does have problems communicating, but he has really come a long way since he started talking at almost 4. Gage has some problems in social situations, because it is hard to sit still and there are millions of synapses firing in his brain all the time. He has to filter a lot of stuff out that you and I don’t have to. But he is trying.

So what I am asking is for you to try, too. Try to find another word to use when you make a mistake. Some good ones (that I am pretty sure are offensive to no one) are: bonehead, doofus, airhead, dork, dipstick, dumbbell, goofball, and nitwit. Heck, I am blonde and wouldn’t be offended at all if you said you were “having a blonde moment”. You seemed like a kind and poised individual, and I am thinking that you truly meant no harm when you used “special needs” as a way to put some humor into your apology. I am assuming you just don’t know that it can be hurtful. I am here to tell you: it is.

So many people assume Gage is unintelligent because of his special needs. I don’t need anyone perpetuating that myth. I worry about what will happen if “special needs” becomes the new “r-word”. People already put so many limitations on him. We don’t need a culture where it is ok to make fun of people with special needs. Just like we don’t need a culture where it is ok to pick on the intellectually disabled. I have (hopefully) 40 or so years to help create a world where my son will be unconditionally valued, no matter what his ability level ends up being (we really don’t know at this point, but we presume the best just like all parents hopefully do). I have 40 years to help this world get to a place where I can feel ok about dying and leaving my son here without me. How will he be treated? Will he be seen as a burden to society? Will he be sent to an institution and abused? Will people still be wasting his time trying to stop him from twirling his hair? Or will people try to understand him and value him for who he is? Will people help him find what he is good at and help him do it? Will people leave his idiosyncrasies alone and just let him twirl his damn hair?

You seem like a nice person. That is why I took the time to write you this letter instead of going to a manager. It is not my desire to get you in trouble, because I don’t think you meant any harm. I just think you didn’t know. That is why I am asking you, please, do not help to create a culture that devalues people with special needs. I am asking you to instead help me. Help me create a culture that sees them for everything they have to offer and everything they can do. I am asking you to help end the current culture of viewing people with special needs as less, a culture that defines them by what they can’t do, a culture that tries to make them act and look just like everyone else because God forbid they look or act different (God forbid they act “autistic”!) a culture that tries to “fix” them instead of helping them. I am asking you not to use them as a punch line, even if it is said in the nicest, most self-depreciating, charming way. I am asking you, please: Just. Use. Bonehead. 

Sincerely,

Gail Pubols
proud mom of awesome children, trying to make life better for them

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.

He had to write about someone who inspires him. I suggested Nelson Mandela. Instead, he chose his 6 year old autistic brother.

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My long-haired boys, Griffin, 8, and Gage, 6.

There is a national arts contest sponsored by the PTA. I try to get my kids to enter every year, but am not always successful. Last year, Gage’s colorful selfie won first in his division for Nevada. Griffin didn’t want to enter.

This year, they both entered — Gage in art this time, and Griffin in literature. The theme was “Believe, Dream, Inspire.” I asked Gage what he dreamed of being, and he said “a pilot”. Gage drew a picture about it, and won his division for his school and an award at the state level (the awards ceremony where we find out is April 5th.) Griffin won his division at their school, too, and something at state, though again, we don’t know what yet. We are very proud, of course.

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But even if neither if them had won, we still would be incredibly proud of them. Gage, because fine motor is so hard for him, and he didn’t even pick up a crayon or pencil without tremendous coaxing until 2 years ago. let alone draw any identifiable picture. Griffin, because even though his entry was an essay, really, it was a picture of his giant heart.

I sat down with him to talk about who he might write about: What does he dream or believe in? Who inspires him– Nelson Mandela? Martin Luther King, Jr.?, Frank Ghery? (Griffin does love his architecture), but no, he didn’t want to write about any of these people.

“I want to write about Gage, mom. He inspires me the most.”  Griffin is 8 years old. Here is what he wrote:

“I believe in my brother Gage.”

There is someone who inspires me. There is someone I believe in. There is someone I have dreams for. It is my brother, Gage.

Gage is 6. He is in first grade. He is blonde like me. He loves to smile. He loves swimming. He loves computers, too. He is a great brother. He is also autistic.

Autism is difference in the way your brain works. It is hard for people with autism to communicate and have eye contact. There is nothing wrong with autistic people, they just donʼt act the way we expect them to, sometimes. Gage is very smart but he needs lots of help to show how smart he is.

Gage inspires me to work harder in school because he works so hard to do things the way he is supposed to. Things that are easy for other kids, like putting on a backpack, are hard for Gage. It took him 3 months to learn to put a backpack on by himself. His mind wasnʼt letting him do it. He practiced every day until he finally did it! He has 3 extra hours of school every day and homework, too. He also has school on the weekends, just to learn the things that come naturally to other kids. He practices things over and over until he gets them right.

I believe in Gage because he shows me that with hard work you can reach your goals. For example, Gage had a very hard time trying to talk. He didnʼt talk until he was about 4. He has had hundreds of hours of speech therapy. Now, he is 6 and he can talk to us. I feel great about that. I believe that he will be able to talk as much as I can one day, because he works so hard. Gage is in 1st grade at my school. He is in a regular class with a helper. I love when I see him in the hallway and I always give him a hug. I feel proud that he goes to my school, because I know how hard it is for him. Iʼm so happy for him, he even made the honor roll. After seeing him at school, I believe that my brother can get a good education and go to college. I will do everything I can to help him get there because I believe in him.

I dream that my brother will one day have a wife and kids, a job that he loves, and a house, and it wonʼt matter at all that he is autistic. I dream that he will be able to travel if he wants to, to see places like Paris, Sydney and Tokyo. I dream that he will be able to do whatever he wants to do, and that I will get to do these things with him. I dream that people will accept him for who he is.

 I am inspired by Gageʼs hard work. I dream that he will succeed in whatever he chooses to do. I believe in my brother Gage.

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I don’t know if I am worthy of being the mom of these kids. But I’ll sure try.

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.

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Which one of these kids doesn’t deserve to be educated?

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