Needless to Say?

Filed Under (Acceptance, Autism and Learning, Communication, Development) by Estee on 27-06-2012

There’s not much more to add to this. As Adam talks a bit more every year, he has become an independent typist and needs lots of help in order to tap into his potential here. It began with prompting and facilitating at a time when no one truly understood what that meant, and others, as a result of controversial court cases, didn’t want to “touch” it with a ten foot pole. I like to ask myself some days where would he be if I had not pushed this forward, even with the doubters. I started because I knew Adam was already reading so it just made sense. Thankfully, we have continued with it against all odds, and we learn more about Supported Communication all the time.

Anne, however, learned to type in a day before iPads and acceptance. You can read more of her story here.

Adam’s Piano Recital 2012

Filed Under (Adam) by Estee on 25-06-2012

Adam did really well at his piano recital yesterday and I’m so proud of him. I don’t take video because I want to be there in the moment with him, not ‘virtually there’ by making sure I got great photos. Grandfather is better at that anyway. When his teacher called him up to play (she’s standing behind him in the photo) The Muffin Man he walked up to the Grand Piano and played. Save for a few glances towards swirling fans high above in the church’s ceiling, he got through it just fine. Two years ago he was completely distracted by a piano painted with butterflies, a “hey this is cool… nope wait… hey look at that one” distraction that derailed his performance. I never took him to the site ahead of time to get used to it. Live and learn.

Adam can read his notes now and play with both hands. We started by colour coding his hands and the keyboard and notes with numbers and moved on from there. Now he’s learning his half notes and on we go, thanks also to his patient teacher and her assistant, Adam’s grandmother, who does exceptional preparation for Adam’s lessons.

Just before the concert, I kept Adam quiet and well fed. I wrote a quick schedule by hand listing the things we were going to do to prepare for the afternoon and we re-read it together. Then we practiced ahead of time — the walk, the playing, the bow. We arrived thirty minutes before the concert to walk inside and outside the building. He pulled at me when we arrived, wanting to explore. I purposefully stopped many times in hallways with lots of doors, which has caused Adam him lots of anxiety in the past — a compulsion to run off and open them. I then asked him to wait and talked him through it all quietly. I checked my phone, dug around his bag and I didn’t hold on to Adam’s hand. He waited with me even though I could feel he wanted to move on. When Adam calmly explored, and knew that he was going to get the chance with me, he was cool. He also accepted change of direction and areas that were off limits.

By the time it was time to sit down in his row for the performance, Adam was just fine. The sanctuary was hushed. He sat for the entire performance, bored sometimes and clapped others. When one of the boys got a little talkative, Adam laughed and wanted to talk back by repeating the last word he heard, “again.” He’s a giddy rule-breaker at heart.

We will definitely go back again next year.

Happy OM

Filed Under (Ableism, Acceptance, Adam, Autism and Learning, Development, Joy, school) by Estee on 21-06-2012

Should I be looking over my shoulder? As autism mom and son are confronted with many obstacles, feeling settled seems like something that will be stolen from us at any moment. Nevertheless, I’m going to write about how happy I feel today because I recollect the difficult June we had last year when Adam’s former school shut down his class. They tried to place him elsewhere after we were given notice, but it didn’t work out. We scrambled to find Adam a new school, and that school is an ABA school. I fretted, of course. While we’ve always done some ABA alongside play-based and other programs that were very effective in Adam’s early years, we had good and not-so-good experiences. I learned that no matter what form of “therapy,” you decide to use for your child, it can all go south if people believe autism can be cured, or that autism is something that is an unfortunate act of nature (or whatever). Adam is a person-first and there is a fine line between nurturing the person — their strengths and challenges — versus viewing autism as just a “problem” that should be fixed at any cost.

I realized during a camp meeting today that it is a year later since the difficulties of the last one. After working with the head of Adam’s school, I feel we’ve got a pretty good thing going. We’ve worked together and with Adam’s excellent team which has been quilted together over the past decade. I am able to provide a lot of input, and Adam’s team go into the school to contribute to his typed communication, and other needs. Along with the structure that his type of school can provide, this is what makes it work for us because we can bring in the academic programs that Adam also needs and they are customized. We cobble our program together.

Adam seems more relaxed, cooperative, happier, and it feels like he’s getting ready to spread his wings a bit farther. Every day, Adam takes his own iPad pictures and sends me an indepedently written recount of his day. I get this by email. I sometimes send pictures to the school of things they don’t know anything about, and Adam recounts his weekend activities, for instance, on his own. They are still short sentences, and some days they are more detailed than others, but they are his. He has moved beyond sight-reading to phonetic reading and spelling, and this is pretty huge. He approaches his peers and wants to play with them in the way he never has before. He doesn’t know how yet to ask “play with me,” but it’s the first time he consistently wants to be with other kids, and not just the adults. We have our mini-conversations on our way home from school in the car, and on some days, he sustains his eye contact and talks to me with such engagement and intention that he commands mine. He still struggles with spoken language, but he speaks a lot more now and it always improves, although he is inconsistent. I know this sounds confusing, but Adam is complex. He says some pretty neat and funny stuff too, attesting to his sense of humour. It’s amazing what the man of few words is able to communicate and make us understand.

Today at the camp meeting — an inclusive camp — it was pure pleasure seeing everyone so excited to see Adam again. This is a camp that really cares about accommodating him and communicates well with us. I thanked my lucky stars to have such a wonderful group of people helping us out every single day as I sat around the table. For all the mountains I feel we climb, I just want to savour this. I want to thank all the fabulous people who make this happen for Adam which seems like a stark contrast to what the public system will offer us. In such good moments, I feel I must remind myself of how important it is to change the way we approach public education for autistic children. It is so disappointing how the system wants to cut back Educational Assistants here in Toronto, and Special Ed, and inclusion seems a priviledge for the verbal and “well-behaved.” The system is sick, not autistic children. I keep wondering why the cut-backs here, and have to assume (lest I use a less polite word) it’s because of the “cost,” and the doubt that autistic people can contribute or be of any value to society– a ratio that tips the economic scales against us. It seems to boil down to that.

To close, I end with a more optimistic tone — how the camp head revealed that many counsellors asked to work with Adam this year. Apparently, so many people at camp always want to come over and say hello to Adam that they have to ask them to hold off in order that Adam can get on with what he’s doing. He’s like a “camp celebrity” (their words, not mine). Here’s a kid who can’t speak fluently and who has many challenges; a child for whom standardized tests do not serve, and the public system underestimates.

This morning, Adam was chanting “Happy OM,” before he left for school, and I for the camp meeting. I didn’t know it was prophetic about the day so far. I hope for other positive signs.

Happy OM…happy OM….happy OMMMM.

The Insidious Implications of The Judge Rotenberg Center

Filed Under (Abuse, autism, school) by Estee on 13-06-2012

When I watch parents defend the Judge Rotenberg Center, I think of children who can go on “loving” their abusive parents. Parents should be the base of not just survival, but of love. When we entrust schools to care for our children, it is disturbing to see how long Matthew Israel and others have defended the use of painful shock treatment because it’s “effective.” Sure it is. Abusers can get children to submit to anything with the infliction of pain. It’s just wrong.

Yet my version of black and white becomes perplexingly gray in the name of what’s effective for “these kids” — these “autistic/emotional challenged kids.” It leads me to wonder where the line is drawn. While The Judge Rotenberg Center is the extreme of how to “normalize” behaviour or allegedly stop self-injury, the implications of how we view autism, the meaning and communication of behaviours, and how we value autistic people become more insidious with what we see there.

As a more common example or possibility, what of the autistic child who may come out of any school who can’t speak, but may have mysterious marks on their body? There are no cameras in other autism schools that I’m aware of. Shouldn’t we, as parents and community, have the right to see what’s going on when our children can’t tell us for themselves?

I think all of us parents and teachers who love to teach, need to advocate for full transparency. We need cameras in classrooms, perhaps even webcams. Schools can protect themselves from teachers who may not be able to handle a situation well. If we believe in the value of autistic people, even with the challenges, transparency should not be an issue at all. We grow and become better with it.

For any therapist or teacher who may wonder why we autism parents fret every single day, it is because of not only stories like these at the Judge Rotenberg Center, but because our children cannot tell us how they are being treated. If we think of a typical child, they come home and tell their parents who is nice, who they don’t like, and who may be bullying them. It is their intrinsic right to express themselves. For children who have more difficulty doing so, it is their right to be protected.

I, for one, will advocate for cameras in the classroom and the stop of abuse of autistic children. I will continue to write about stopping the abuse at the Judge Rotenberg Center.

After The Wedding

Filed Under (Ableism, Adam, Advocacy, autism, Autism and Intelligence, Development, Research, school, Sensory Differences, Transitions) by Estee on 12-06-2012

Adam happily skipped down the aisle at his sister’s wedding. He didn’t sleep the night before, mind you, so I had to go with the flow. The question I asked myself was what was really important in this affair? First Adam, of course. If he were to have fallen apart that day, I would have aborted the mission. That didn’t happen so my goal for him was to be calm and walk down that aisle. I was going to forget the photographs but he seemed happy enough to leave for the wedding on schedule. I made sure we arrived at the tail-end of the photographs to avoid long waits. I prepared his bag of tricks — food, fidget toys –and a schedule on his iPad using the First Then app. I used the photographs from our visit to the facility earlier in the week, and wrote sentences from the time we entered to the end of his wedding duty. I recorded my voice with the pictures, and he loved that. He reviewed it many times before we left the house.

Arriving to the photography session, there was excitement and fuss — tightening his bow tie, buttoning his jacket, and he didn’t like that much. He wasn’t given any processing time. Then, Adam was lugged by the hand from this photo to that. He wasn’t happy with that either, but maybe there’ll be a couple of decent photos. Dad walked him down the aisle for practice and I asked if he could be excused from the formal rehearsal thereafter so he could have a quiet room and a break. This was successful. He ate some food, sat on the couch and seemed very happy. I think this was his chance to process where he was and that he was finally at Serena’s wedding, for he indeed said “Serena, Serena…” followed by a giggle.

Then we were asked to vacate the groomsmen’s room. We walked about the facility slowly, saying hello to people coming in. We were to wait around near the room where the wedding party would gather prior to walking down the aisle. Dad came when it was time to collect Adam and I took my seat.

Finally, what felt like a mile-long aisle, Adam walked down in the hands of his two older brothers and I fought back my tears. He started to skip a bit…Adam likes skipping more than walking. His brothers brought him to me and he sat down for the rest of the ceremony until the end, noshing on lollipops and a bag of grapes. He was picked up and driven home after the ceremony as I knew he would be exhausted from a sleepless night. Otherwise, he might have stayed at the party a little longer.

Later that evening, I looked at my phone and read “ambulance.” I quickly rose from my seat and called home. My parents, who took Adam after the ceremony, were with him at my home. They heard a sudden crash and went to check on Adam. He seemed okay so my father looked out the window. Their car was totaled in my driveway from an elderly man who lost control of his car (and tried to get away). I was so relieved to hear that no one was hurt, but I felt sick to my stomach that they had helped Adam out to make it possible for all the intricate wedding scheduling to happen, only to have their car wrecked. I know, it could have happened anywhere, but still.

~

The wedding is now over and after decompressing, Adam is back in school. I’m going through reports as I prepare for this summer and his next school year, as I will be returning to grad school in September in Critical Disability Studies, hopefully to help Adam, and to answer the many questions and issues I raise on this blog. There are so many that I would like to make a contribution to the body of work on what kinds of help autistic people need in order to contribute to society as autistic people. I thank many autistic people for helping me with that question when I first created The Autism Acceptance Project. These conversations happened years ago when I was seeking input from autistic adults in creating an autism organization. Many parents want to get involved and for good reason. Yet, I thought that the charity models weren’t supporting autistic individuals well, and wanted to discuss this. I feel it’s now time for me to go back to the drawing board and contribute to the science.

~

Adam recently had a series of standardized academic tests. The testers acknowledged in the report that these standardized tests do not accurately reflect Adam’s “true potential,” and they have ordered the Ravens for him. Still, the report puts him in well-below average ranges. I don’t think there is any typical parent, who came home with a report card without at least a B, who hasn’t inherited the same feelings of what it means to be “successful.” My little guy who stims a lot, who can’t sit still, was placed in a little room for three days and expected to work for two hours at a table — while some painful teeth were coming in. While the testers acknowledge the many limitations for testing autistic folk like Adam, changes have not yet been made in terms of how we evaluate the autistic population. The testers stated that there should be computerized tests and I would add, there should be a sensory room and tools such as seating pads, and even a trampoline if necessary.

It was suggested that Adam have lots of breaks in school, use the iPad and computers for learning, yet the tests to determine autistic ability, intelligence, as well as areas that need to be further supported, don’t yet accommodate this learning style. They noted that in some areas Adam functions at a 13-year-old level and in others (like Math) at a grade one level. When I was in the testing room with him, I also realized that the many items they were asking Adam about, have NEVER BEEN TAUGHT to him. How, I thought, could he answer so many questions accurately when no one has even taught him these very specific things? I realize that no matter how much I talk about this, my comments seem to fall on deaf ears. Yet, this is an important link and a reflection of how Adam can teach himself. In this alone, we have to acknowledge an autistic learning pattern and ability to learn overall. In particular, Adam had excellent pattern recognition, and he knew sophisticated words that I know he has never been taught in school. Since he’s been very little one can always catch him reading a book, although I think most people don’t believe he was actually reading.

When I hear on the news of an autistic person having disappeared with a description of their functioning level, it frightens and disturbs me. I cringe when I hear that the person “functions at a five-year-old level” when they are 16. True, there is real disability here. But if I know Adam well, and I do, watch him type what he wants for a YouTube video, or something on the Internet. Listen to the teachers who also see Adam “perform” with 100 per cent accuracy one moment, only to unravel to “a four-year-old level” the next. That to me is the nature of Adam’s autism. Having people understand the variances is so difficult and it’s tempting to want to give up. Making sure Adam is not placed in a class where he puts the same puzzle together seems to take enormous fortitude. We have to continue to serve, to address disability not as something to be ashamed of, but respected and accommodated, while ensuring autistic people receive the education that they rightfully deserve. This has to start at understanding not only the impairments but in the pathways and methods that are successful to learning. In addition, our charities and scientists have to work harder in promoting the value of the autistic population. Without this premise, we won’t be able to accomplish our important goals. Going from theory to practice takes a long time. We also have to also start in the testing room with the tools we have now.

Adam the Groomsman

Filed Under (Family, Inclusion) by Estee on 08-06-2012

It has been a busy week of winding down the school year, preparing for camp and… Adam’s eldest sister is getting married on Sunday. My boy will be walking down the aisle in front of hundreds of people in a tuxedo. How do we prepare our kids for a large wedding like this, never mind one in which he will be looked at by many people? That’s nerve-wracking for most of us.

I don’t have a formula, but can only tell you what I’ve been doing. Adam and I visited the site and took pictures of it on his iPad together — from outside the building into the foyer, up the elevators — the whole part. It is a very big facility so I know he will be tempted to run to every dark nook and cranny. Using the pictures we took, which won’t look at all like the facility when it’s decorated, I wrote a story about the entire schedule of the event and what Adam will be doing… Adam’s own little visual wedding book. I say to Adam that there will be doors and he will be okay if he doesn’t go through them. For him it’s a huge curiousity and an area of anxiety if he doesn’t know what’s behind a door. Adam has been practicing walking down the aisle, and I’ve tried to glean aspects of the ceremony from his dad and sister so I can prepare Adam as much as I can. Lots of visuals, including a schedule on his iPad, discussions and practice are key to making Adam not only a part of the wedding, but hopefully, in making it work for him as well.

There will be a lot of waiting too. I’ve had to back Adam out of some of the family photographs and arrange to accommodate him so he doesn’t have to wait around for hours. It’s not important to be at every scheduled photo — he could be photoshopped in, and there will be other photo opportunities. It’s not important that he stay at the party, either, which will be hundreds of adults. He typically loves a good party — the flashing lights on the dance floor and he can really cut the rug. In this case, being on a Sunday night, we’ll play it by ear after the ceremony. He might hang for a bit, and if he can’t that’s okay. We’ve got someone on standby to whisk him home. A bag of food, his iPad and the things he likes will help for a while. I try not to get anxious about making it for every single part of the event.

One has to also ask what’s really important with events such as these. It’s important to make his sister happy and for him to participate in the way that he can. He’s been asked to do it in a typical fashion, and with the help of his two brothers, I think it will work for Adam. For me, the goal is keeping Adam happy and calm for his walk down the aisle.

We can’t prepare for everything, but we can prepare to a certain extent. I am excited to see Adam in his tuxedo and report back here. I am also excited that he will be a part and he will have a memory of participating in his big sister’s, big wedding.

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About Me


ESTÉE KLAR

I’m a PhD candidate at York University, Critical Disability Studies, with a multi-disciplinary background in the arts as a curator and writer. I am the Founder of The Autism Acceptance Project (www.taaproject.com), and an enamoured mother of my only son who lives with the autism label. I like to write about our journey, critical issues regarding autism in the area of human rights, law, and social justice, as well as reflexive practices in (auto)ethnographic writing about autism.