I’ll be participating in Autism Now’s webinar today at 2 p.m. EST and speaking about The Autism Acceptance Project and my life and journey with Adam. Anyone can register by clicking the link.
Huh. I just wrote that title quickly and then Monty Python’s Always Look on the Bright Side of Life plays in my head and makes me laugh. It’s so cheesy, it’s perfect. Focusing on the positive means you have to feel things, even uncomfortable things. We can screw up, then click our heals and sing a silly tune. So what? So you feel bad one day about something, be it yourself, your “fate,” your kid’s autism. If we didn’t feel we wouldn’t be able to enjoy the richness of life. I have my down days and my up ones and keep learning that staying with the positive is a continued discipline that has to be practiced day in and day out. If I worry about Adam one day, I always know that the next day I’ll think differently because I’ve made that choice. I believe in that kind of life view and that it takes some effort to, well, think positive. That’s it. It sounds easy. No grass is greener than the kind we grow in our heads.
On to my point. Today I’ll share some nice comments in the May 2011 issue of Today’s Parent by readers who read The Joy of Autism article in April. It was the fertilizer I needed to click my barefooted heals, as if the sun was shining on a warm spring day, in thick long grass.
Count Your Blessings
Re: “The Joy of Autism” (March). I always like to commend magazines that include articles on autism. I feel that the more awareness there is, the easier it is for parents to begin to accept and involve their child with autism in the community. As a senior IBI (intensive behavioural intervention) therapist, I develop and implement programming for children with autism and work closely with families to help develop skills. I must admit that I found this article refreshing with its focus on the joys that children with autism often offer. Parents can become so focused on making gains that they forget to enjoy all the little moments of joy. As a parent of three children, I always try to encourage the families I work with to enjoy their child just as they would any other child, and to embrace those little moments of joy that children with autism so often provide. — Rebecca Grezegorczyk, St. Thomas, Ontario.
Fabulous! I raise not one but two boys with autism and I can attest to the fact that finding “the joy” can often seem like a futile and frankly impossible feat. However, I too feel, and always have, that my boys’ state of being should be seen as a blessing. I honestly believe that people living with autism have a great deal to teach the “typical” world. T’is the human experience magnified, is it not? — Marlowe K, via Todaysparent.com.
Today happens to be National Poem In Your Pocket Day. On my Twitter account, I’ve posted a couple — one I wrote and one which is just a quote I really like.
I just moved some things around my house today. It’s spring and the change of season beckons me outside to set up furniture and plant seeds. On the inside, I’ve got to shuffle things up. I’ve got to switch things around so I feel at home again, but also renewed in my space. I moved a bowel to my dining table. It’s been sitting on a glass shelf from the time I moved into my new house last year. It looks okay there, a light pink blush glowing on the inside. Then, as I moved some books to another corner of the room, I opened to this page quite coincidentally:
This story is about a bowl.
A bowl — waiting to be filled.
If what I have just written makes no sense to you,
I am not surprised.
If I had known in the beginning what I was looking for,
I would not have written this story.
I had to trust there was a reason I had to write,
and I didn’t have to have it all figured out in order to begin.
I would find what I was looking for
along the way.
— Sue Bender, Everyday Sacred: A Woman’s Journey Home
It’s a nice way to sum up why I think I write here, on scraps of paper, in my daily journals. I do have faith in reasons; in my blushing bowl on the dining room table.
Adam has a new teacher at school. Immediately, she ripped down the clutter on the walls that distracted Adam. She has Adam learning about money, in “taking circles” with the other children. Reports are Adam is doing well in school and wants to pay attention. Before this teacher, we were worried about Adam’s attention and even tried Ritalin for a couple of days. It just took two days and I couldn’t take watching my son transform into a person I didn’t recognize — his eyes glazed over and his legs twitched uncontrollably. Adam lost his joy and personality which seemed like much too big a sacrafice even though he was completing tasks like a robot on speed. I polled numerous parents who do have some success with this and asked how long it actually takes to get the meds “right.” Some parents said “years,” and “never,” because a child continues to grow.
I don’t have the stomach for it. That’s what I’ve learned as Adam’s parent. I look at some parents and see what levels of creativity they have in awe. I can’t muster the energy to build castles, a volcanic model… yet. Okay, I’m not that bad. I do lots of things with Adam. Mainly, I enjoy just being with him — going for walks, to the park, drives, to restaurants, and playing games here at home. I enjoy learning to play music again and Adam often plays the piano next to me — I like that and it comes naturally. In the summer, we enjoy swimming. I just don’t have the stomach for the endless trial and error to get Adam to become “normal.” In the quest for a cure, I have seen that Adam loses his essence. So it’s official: I can love him and have my limitations too.
In my journey, I’ve learned that other people have to be his teachers now. It is good for Adam to learn from others. I see him becoming more independent and communicative at home. I am really good at loving him, and well, being his parent. I get top marks for that, I think. So I’m thrilled that one teacher can make such a big difference — that Adam can pay attention without medication. It should make us all think, as parents, what we can do to help proliferate this need for great teachers and schools — to create lucrative enough opportunities for teachers to want to stay in the profession, and with our kids.
Sure, I don’t know what the future has in store. My ideas of it are always shifting. I’m just trying to have faith that everything will work out the way it is supposed to.
On another note, I’ve been wanting to write that Adam had his ninth birthday party on Sunday. Most of the kids from Adam’s school have never attended a birthday party before. Like them, Adam rarely gets invited to parties. It is but one unfortunate fact of the autistic life that people need to know and understand. I try to create opportunities for socialization and had typical kids in with the group. I hired a company that brings snakes and an alligator in order for the kids to be engaged and kept a lot of structure, which was successful. The “special needs” kids were so grateful and polite. I heard a lot of thank you’s that day.
Later in the week, my mother sat in my kitchen. “That was the loveliest kids birthday party I’ve ever been to,” she said. “The kids were so nice.” Her face changed to a look of awe. “Usually you go to birthday parties with typical kids and they are all spoiled and complaining. These kids were so mature.” I felt eubuillant when she said that because I felt it too. If only everyone knew. If only everyone knew that the kids with challenges are not “behavioural” because they are spoiled, but because something in the moment is truly frustrating and difficult. If only they could have seen what my mother recognized.
Maybe we’d be invited to more parties.
Meet Amy Hempel, a New York writer. She tells us why she writes.
Sometimes people are really critical of writers, particularly those of us who share our days and our lives with our autistic children. As if a writer doesn’t already have the little voice in the head — the just who do you think you are? one always squeaking in our heads. Sometimes there are real people who tell us the same thing in the “autism community.”
I hesitate to call it a community because people continue to be so divided despite our sameness; despite the fact we all get up in the morning with the same wonder if our children will do something exceptional. Will they utter a sentence? Will they have a good day or a bad one? You know the list as we wake, sometimes waiting with bated breath, other times allowing ourselves to relax in the moment and actually enjoy special moments with our kids. I am continually astonished how similar we all are, despite political interests.
Like Amy, I am also curious in the every day and what enables us to get through our challenges. What is it in each one of us that keeps us going? This, to me, is the gourmet meal of life. In my life with Adam, mustard always comes on the side.
I’m a horrible mother. This thought entered my mind early Monday morning. Adam left for school. I leaned down and he smiled at me and kissed me goodbye, puckering his blushed lips, looking into my eyes. “Don’t forget to carry your lunch bag,” I urged, trying to teach him to become as independent and responsible for himself as possible. He grabbed the blue handle brusqley and walked out the front door in his spring jacket. At nearly nine years of age, he looks like a little man with a miniature brief case. He turns around, revealing a glimpse of soft skin. “I wuv you mummy, yes. B-bye.” I closed the door and headed to the window to wave the way I always do. Adam looked up at me as the car pulled away.
Adam’s birthday was a week away — a few days from now as I write this. It was March Break a couple of weeks ago and he was with his dad. We alternate that holiday every year and it was my time to do my own thing. Am I supposed to have fun? Am I supposed to fall in love again and rebuild my life? It’s so different being a single mother.
I panic, noting the date in my head. Which friends do I invite? Adam doesn’t get invited to very many play dates. Instead, we do programs and school. During programs he at least receives the attention and assistance he needs. There is structure. At least he is happy, but I’m missing him when he is in those programs. I still wish he had friends who came over to visit him in his own home. Adam and I are so dependent on each other for friendship.
Then there is our issue these days of him being terrified going to new homes. We have to work on that the way I said we would a few months ago. We have to visit friends on weekends, for ten minutes or so at a time, at least that’s my plan. We could work our way up to more time and voilà, Adam will be used to new homes. Why haven’t we done more of it? Parenting is tough work, period. It’s also important to enjoy our children. I think it has to be stated even more so when there is such pressure for us parents to be super-charged teachers or “warrior moms (and dads).” We need more balance in terms of what our roles should be and the supports we and our children deserve.
Right, there’s the PECS I have to print out. The team told me I have to label more around the house — they give me a lot of tasks. More schedules. Safety rules to teach, the phone skills he needs to learn now. I’ve managed to at least put the PECS on the phone. It’s waiting to be programmed. There was that four page instruction list of OT recommendations for evenings in order to keep Adam organized and ready him for bed. There is the homework we do — at least I’m good at that, piano practice. Adam is exhausted by the end of a long school day and likes to entertain himself on YouTube for a while. But we have so much work to do….
I’m exhausted by all this planning and coordinating of people. I’m guilty that I’m exhausted, some days, and wonder if I’m a good enough mom. I should be teaching him more on the iPad, his Vanguard — crap, I forgot I have to do that too and program it. Then there’s typing, reading books and comprehension questions I have to ask him every day. Reading an article in the Globe & Mail yesterday, Autism: Tracking a Decade of Treatments, and Dr. Cummings states that treatment includes looking “at the role of parents in working with their kids at home.” Holy *&^6. I’ve been doing this for nearly a decade and you want to lay on more?
The reality is, Adam comes home from school, eats his snack, likes to hang around me leisurely in my office or in the kitchen. We do homework, a bit of music and music comes easily to us. He sits beside me and we play duets and it feels like the path of least resistance when we are simply relaxed, doing stuff together. Later, has a shower and winds down for bed. I mean, how much time is there really in the day to be super autie mom? Heck, forget the autie part. There are some moms who home school and nurture genius. Maybe I’m just not one of them. Life has changed.
I try my best, even if some days I feel my best isn’t good enough. They are moms who run those PECS off every day at their computers. They are moms who crack the whip so their kids learn to type and publish books. I try to just keep things moving, negotiating with people in the background, but who are in the foreground of Adam’s life. For me, that’s a full time job right now. I’d guess that for all of us it is.
It hits me. I’m learning my limitations as a mother and as the person I am. I’m learning what I need to do and how to do it so that there is abudance of happiness, not stress, in my home. My laundry list of worries is part of my awakening.
I’m really good at the most important part of mothering Adam. That is, loving him. Lately he calls my name a whole lot more. So I guess he knows it. At least I know it too.
Recently, the CDC proposed a separate criteria for wandering in autism. You can find the PDF here. I have received permission from the Autism National Committee (AUTCOM) to make this letter available to readers in response to the proposal:
Dear Ms. Pickett:
We are writing as a coalition of organizations representing a wide variety of different constituents in the disabilities field. We include organizations run by people with disabilities as well as those run by parents, other family members, professionals, providers and many others. Our coalition also includes groups representing a wide array of different kinds of disability categories, including developmental disabilities, mental health conditions, physical disabilities and sensory disabilities. We are writing to express our profound concern about the proposed ICD-9-CM code for wandering discussed at the last meeting of the ICD Coordination and Maintenance Committee on March 9th-10th.
While wandering behavior leading to injury and death represents an important and legitimate safety issue for the disability community, we are concerned that the proposal put forward by CDC’s National Center for Birth Defects and Developmental Disabilities (NCBDDD) is not rooted in high quality research and has significant potential unintended consequences for people with disabilities and family members. We encourage the National Center for Health Statistics to reject an ICD-9-CM coding for wandering behavior as ill-advised and inappropriate.
First, a code for wandering behavior could limit the self-determination rights of adults with disabilities. The wandering coding has no clear operational definition and thus no limits to its application. The proposal makes no distinction between wandering behavior that would qualify for the coding and a rational and willful effort by an individual with a disability to remove oneself from a dangerous or uncomfortable situation. For individuals with significant communication challenges, attempting to leave a situation may be one of the only ways of communicating abuse, a sensorily overwhelming situation or simple boredom. We are concerned that if this coding enters the ICD-9-CM such attempts at communication will be disregarded as medical symptoms.
Second, a code for wandering behavior could lead to serious unintended consequences in professional practice for schools and residential service-provision settings for adults with disabilities. Restraint and seclusion in schools and in residential service-provision settings is already a persistent problem. The application of this coding may result in increased restraint and seclusion as a way of preventing wandering behavior, supplanting required active support, person-centered planning and appropriate supervision. In addition, we are concerned that this coding may enable other forms of overly restrictive interventions and settings. For example, individuals with disabilities who are labeled with a wandering coding may be less likely to be included in the general education classroom, more likely to be placed in large group homes or institutions and more likely to experience chemical restraint. Each of these issues already represents a critical problem for people with intellectual and developmental disabilities that this coding may exacerbate. For example, while only 18% of adults on the autism spectrum receiving developmental disability services have a diagnosis of mental illness, 41% of such individuals are receiving psychotropic medications, suggesting a high incidence of chemical restraint.
Third, the proposed ICD-9-CM code for wandering behavior lacks research support and is not based on evidence or a controlled examination of the issues involved. No research exists to look at wandering as a medical rather than behavioral issue. The research which CDC relies on to make the case for this coding is weak. For example, one of the statistics that CDC cites (that 92% of families of children on the autism spectrum report at least one or more incidents of wandering) comes not from a high quality research study, but instead from an online poll on the website of an advocacy organization. This is not in line with the high standards for research and evidence that CDC’s bases its other decision-making on.
While we respect the good intentions behind the creation of this coding, we firmly believe that there are other ways of accomplishing the positive objectives of this coding without placing people with disabilities and our families at risk of the same unintended consequences. Other methods of data collection around wandering can and are being pursued by both public and private funders. In addition, a wide variety of human services and educational approaches hold significant promise in addressing the issue of dangerous wandering behavior outside of a medical context. As a result, we strongly urge you to reconsider and reject the proposed ICD-9-CM coding for wandering behavior.
Autistic Self Advocacy Network
Council of Parent Attorneys and Advocates (COPAA)
National Association of State Directors of Developmental Disability Services (NASDDDS)
If you wish to respond, please contact AUTCOM or circulate this letter.
More Magazine is a Canadian magazine that “celebrates women over 40.” I eagerly sought the April 2011 issue as I knew that Kim Pittaway, who did this article also about Adam and myself, also wrote an article about Michelle. I learned during the interview process that unlike most reporters I had been dealing with the past few years, Kim had been spending a lot of time with autistic people.
I met Michelle in 2006 during the Joy of Autism: Redefining Ability and Quality of Life event I organized. We spoke and I also sought advice from her about the very title of the event, to what autism advocacy from might look like in order to be fair to autistic people. It wasn’t all easy for me in those early days in trying to understand what “advocacy” could be. We all want to “help,” and as a parent with a young autistic child, I wanted my son to be accepted and understood. It was easy to get confused with the fundraising models to which I became accustomed; before I bore a child with a disability. I learned from Michelle who helped me at the time, to use the following words when I founded The Autism Acceptance Project whose mission became “to help autistics contribute to society as autistic people.” The words continue to resonate in Canada where we still seek to change the autistic person.
Autism advocacy, for the most part, fails. It has failed because it relies on pity models — poor person with fill in blank. I’m sure they don’t want to be like that. I’m sure they want to be cured; to be normal. So glad I’m not like him/her. I should give money to help that horrible circumstance. Not to be too cynical here, but study the Disability Rights Movement over the years and one will learn why the whole way we look at disability, autism and how we raise awareness must change. Pity models don’t support people to get what they need in order to become active members of our communities. They suggest that people have to be normalized in order to do so.
Bringing Michelle, Laurent Mottron and Morton Ann Gernsbacher, to speak about the short-comings of ABA and the science to support autistic intelligence at the event in Toronto came with a price tag. We received a lot of nasty letters. I learned afterwards that many ABA advocates actively boycotted the event. Yet, I learned, and continue to learn, so much from Michelle and individuals like her. As a fellow woman I admire her intelligence and tenacity in a world where it’s easier to just get along rather than actively push for truth in order to fairly support autistic individuals. As a mother of an autistic son, I am grateful for her work.
A quote from Michelle in More Magazine:
I became involved in [the Auton case — when a group of parents fought the BC government to pay for ABA treatment and Michelle intervened] becuase the false and unethical claims and practices by both sides had a drastic effect on the well-being of autistics in Canada,” says Dawson. “I intervened as one such autistic, who had lived the consequences and would continue to live the consequences.
I was an early autism parent, that is, Adam was not even two years old when I began reading Michelle’s work at No Autistics Allowed, when my emotions ran high and every parent of an autistic child at the time urged me to enrol Adam in ABA (early intervention behavioural therapy) as soon as possible — before it was “too late.” Or else, they said, he would be doomed to a life with autism.
Well here we are and Adam is about to turn nine. I don’t feel we are doomed, even if we have special needs.
Michelle’s work along with Dr. Mottron’s continues to be a part of my journey as Adam’s mother. If you are interested in doing the same, here are some websites to follow: