In case you haven’t had your fill of me yet, I’ve been featured in another interview. This one was far more enjoyable for me than my TV appearance! Deborah at 5 Minutes for Special Needs was kind enough to ask me a few thought-provoking questions, and I was only too happy to answer them, especially since I wasn’t being filmed! So if you’d care to mosey on over, check out my interview with 5 Minutes for Special Needs, and check out the site while you’re there, if you haven’t already. It’s a great resource for fun and practical ideas and inspirational stories. Thank you, Deborah!
Monthly Archives: March 2009
If I Blogged 5 Years Ago
Yesterday, on my way home after picking up the boys from the 700-Mile Kid Swap, I thought about what it was like when we first started doing it seven years ago. I thought about how Aidan used to throw up in the car at least every hour and how Nigel, newly verbal and still figuring out syntax and pronouns, would ask, “Why you throw up?” So I thought I’d do a follow up to my previous post on this topic.
If I blogged five years ago, Nigel would have been nine and Aidan would have been seven. I would have written about how hectic it was to have two children having IEPs with one parent to attend them (and trying to find childcare beforehand). I would write about how Nigel, who had taught himself to read at age three, before he could talk, was now reading at a middle school level and could comprehend 90% of it. Conversely, I would write about how Aidan still couldn’t read, even though I’d read to him every single night of his life and had tried to teach him for years, and so I had him in a special reading program at his school in addition to his speech therapy.
Five years ago, I would have blogged about emerging Nigelisms like this:
The Scene: Interior suburban family home. Two young brothers are seated at the dinner table while their mother serves them their plates of food. For the first time, the children are having full-size turkey burgers, as opposed to their usual half-size, so their mother placed them on buns instead of regular bread, as she had previously done. Due to their limited acceptance of foods, she wonders if they will refuse the buns.
Younger brother, about age 5: Mom, what is this fred?
Mother: It’s a bun.
Younger brother: There are bun freds?
Older brother, about age 7: Not ‘freds.’ BREADS. Not an F, a B.
Nigel, as soon as he learned to talk, loved to correct Aidan, who had pronunciation issues. But one thing that surprised me a little was that Nigel seemed to want me to correct him (Nigel). If he misused a pronoun, I would gently correct him, and then he would repeat what he’d said and insert the correction, as if memorizing it. It took about four years for him to learn to use pronouns, articles, prepositions, word order, and verb tenses correctly. He put so much effort into learning to talk. It always touched me how receptive he was to my gentle corrections. It was always the same – he would quietly repeat what he’d said and insert the correction, then move on. This happened several times a day for a period of about four years. Having studied French for several years while in school, I recognized the process of learning a foreign language. And that was how Nigel learned to speak English – like it was a foreign language.
If I blogged five years ago, I would write about how I ventured back into the realm of grocery stores and the occasional restaurant with Nigel. Salon haircuts were possible for the first time with ear plugs. He was finally starting to filter out all the sounds that had been unbearable to him before. It was liberating for both of us. I would also write about my first published magazine article, “Autism on the Rise,” which was featured in a regional parenting magazine. I would sadly and angrily blog about the first time I heard Nigel being called a retard, and how I ran outside and yelled at the boy who said it.
Five years ago, I would write about Nigel’s incredible third grade teacher, the man who happily volunteered to take on a newly mainstreamed autistic boy, one who had struggled notably the previous school year, even with a full-time aide. Mr. Incredible welcomed Nigel, provided the structure he needed, patiently included him and encouraged his other students to do the same. He made Nigel feel so comfortable that, for the first time ever (away from home), Nigel removed the snug-fitting hood of his jacket when Mr. Incredible suggested it to him in the classroom one afternoon, after six months in his class. And Mr. Incredible was just as excited about it as I was. He still, five years later, inquires about how Nigel is doing.
Incidentally, Mr. Incredible was also Aidan’s third grade teacher. By the end of that year, Aidan was reading. And now, just three years later, he’s reading at a high school level. Five years ago, I would have never thought that would be possible. That and so many other amazing things. New issues have certainly come up in the past five years – bullying, homeschooling, behavioral problems, medication, etc. – but the fact is that both of my boys continue to improve. Hope abounds.
Someone’s Listening
Too often, we feel like we’re talking ourselves blue as we try to advocate for our special needs children. It feels like no one’s paying attention, like the only people who care are the ones who are in the same shoes. It doesn’t seem like anyone who could really make a difference is taking notice. Well, someone finally did.
I got home from work yesterday and showered, getting ready to go see a movie with a friend. As I was preparing a quick dinner for myself, the phone rang. I answered, and it was someone from our local news station requesting to come and interview me (!) about “the new Oregon Commission on Autism Spectrum Disorder that was created by the Governor today” (!) “Wow,” I said, grasping for a semi-intelligent response since a) I hadn’t managed to catch any news yet and had not heard about the Commission, b) they’d probably gotten my contact info from the Autism Society of Oregon since I’m a Chapter Rep, and I didn’t want to sound completely ignorant, and c) I’d never been interviewed by the news before. (!) To be on TV. (!) At least I had already showered.
After we set up a time to do the interview, I ran around cleaning the living room, of course. Then I did a quick search to get some info on the Commission and our illustrious Governor here in the beautiful state of Oregon, which yielded the following:
Governor Creates Commission on Autism Spectrum Disorder
(Salem) – Today Governor Ted Kulongoski signed Executive Order 09-07, creating the Oregon Commission on Autism Spectrum Disorder (ASD). The commission is charged with creating greater coordination and planning to better engage and provide services for individuals experiencing ASD and their families.
“Oregon, like other states, has seen a dramatic increase in the number of children diagnosed with Autism Spectrum Disorder,” Governor Kulongoski said. “This commission is an important first step in ensuring that individuals experiencing ASD and their families receive the services they need to face the challenges that come with the disorder.”
Across Oregon, services to people experiencing ASD have been fragmented and inconsistent, resulting in poor coordination with the various agencies and entities that provide services. The commission will make recommendations to increase coordination and collaboration through the identification of policies and strategies that will improve interagency agreements and address funding issues . . . “This commission will help make sure Oregon is incorporating all of the best information available on autism in treating and supporting those experiencing ASD,” Governor Kulongoski said. “The commission will also ensure we are getting the maximum benefit from local, state and federal resources.”
And then came my 15 Minutes! (Um, more like 15 seconds.) Unfortunately, I’m unable to embed the video right here on this site, so you’ll have to click on this link to view the two-minute news feature that aired in southern Oregon last night. They put me on twice! Not bad for an introvert, eh?
Comfort Zones
I’ve never been called a social butterfly. Not even close. I am a happy introvert. My Facebook “About Me” section says: I have two sons, one autistic, one not. Both are more social than I am. So I started blogging.
But long before I started blogging, I noticed something happening that I wasn’t too comfortable with. Nigel’s diagnosis threw me into frequent meetings with various therapists, teachers, doctors, and other people. Then Aidan’s special needs became apparent, and I had to deal with even more therapists, more people. As my sons learned to talk, I noticed that they were not introverts. One got interested in Scouting (actually both did, at first), and the other one went to a lot of friends’ houses. I met the friends’ parents. I met the Scouting parents. Some of them even became my friends. As the years went by, I met more teachers and therapists and other parents. The fact is that both of my kids, especially my autistic one, have gotten me out of my comfort zone. And I discovered wonderful people – and a side of myself – that I might never have known.
Even so, when I have to go to a meeting or call someone I don’t know, I still step outside my comfort zone on a weekly basis. But people with autism, whether introverted or extroverted, have to get outside of their comfort zones every day. Nigel, with his fear of bees and other flying insects, gets outside of his comfort zone every time he steps outside. He gets outside of his comfort zone every time he enters a public restroom and wonders if there’s an air hand dryer on the wall, and if someone will use it while he’s in there. He is outside of his comfort zone whenever a baby begins to cry or an alarm goes off or a light is too bright. How many times a day does he step outside of his comfort zone?
I attended a dinner party tonight, and I only knew one person there, someone I hadn’t seen for almost four years. I was definitely outside of my comfort zone. It’s not that I’m shy, it’s just that it takes a lot of energy for me to pull that off, to push myself to be social. But I’ve been doing a lot more of that in recent years, and you know what? I laughed and broke bread with these lovely people, and I talked about autism and homeschooling and my job and places I’ve traveled, and I really enjoyed myself. In fact, at some point during the evening it dawned on me that I couldn’t be out of my comfort zone because, well, I was comfortable. I really was.
It’s hard to get out of our comfort zones, whether we’re autistic or just introverted (or in some cases, both). But I think if we do it enough times, our comfort zones evolve. Nigel is now comfortable in grocery stores and restaurants, places that used to cause him such agony. He likes these places and asks to go to them. The last time we went to a movie theater, he didn’t even need to use ear plugs. Some comfort zones may always be difficult to step out of, regardless of how much we try. But others, with time and patient attempts, can change. It’s good to stretch ourselves, whether we’re conscious of it or not. We stretch a little bit, and our spirits are encouraged to keep going, keep stretching. The rewards are too great to miss out on.
Suspended Reality
I sit in my quiet house watching snow falling on branches of trees that had already started blooming again. But the really unusual part of that sentence is that one word – “quiet.” That’s right – my sons are not home this week.
They visit their father in LA for several weeks every summer, as well as Spring Break and Christmas. I’ve mentioned The 700-Mile Kid Swap before, as well as what happened the last time we did it. But this time was by far the most beautiful (scenery-wise). We took a little detour into north-central California to meet up with their dad at a different spot, since he wanted to take the boys to visit his mother for a few days. And the drive there was simply incredible. At one point we drove through seven miles of orchards. Yes – seven miles of orchards one right after another! And through the trees we could see views of beautiful Mt. Lassen, which Nigel and I climbed last summer. Nigel liked seeing Mt. Lassen, but Aidan was enamored with the orchards. “I would love to live here,” he said in a dreamy voice.
So now they are away this week, and my home is quiet. And I have tons of things to do to fill that time, but I feel like I’m missing an arm and a leg with the boys gone, and it’s hard to get anything done that way. I don’t feel like myself when they’re not here. I’m living in a suspended reality.
I sometimes wonder if that’s what life is like for Nigel – he has his way of viewing the world, and a lot of it is very different from how others view it. And I especially wonder how it is for him being on Risperidone. He is calmer, yes, and can regulate his behavior a bit better, but he is not himself. It is a subdued version of him, a suspended reality. His eyes – and his demeanor – are different. I know – this was what we wanted. He wanted it, too. We wanted the change in behavior. But I didn’t know there would be a change in him, in his countenance.
Again I remind myself that he doesn’t need to be on it forever – just a couple of years, I hope, until he learns to regulate his behavior himself. And eventually he will, of that I am sure. He says he can feel the difference in himself, and he is satisfied with the results, which is most important. But I’m looking forward to the day when he no longer needs to take it, and I can have the real Nigel back. For now, though, I know that I’ll still enjoy the company of the modified Nigel. He may not appear to be himself right now, but he’s still unequivocally Nigel. And I’ll smile as I think of him at the sunny beach this week, while I watch the snow fall.
Autism and Writing
Sometimes, when I’m writing, I just don’t know where to begin. A quote is nice as a hook, and so is a well-crafted topic sentence. Once I figure out the beginning, I can usually organize my thoughts well enough to write a fairly decent piece. But sometimes the ending gives me trouble. Or my transitions are choppy. It doesn’t always flow.
Nigel has trouble with all of these things, every time he writes. He usually has plenty to say (these days), but organizing all of his thoughts is difficult for him. He is back in regular school, but because it’s part-time, some of his subjects still fall under the homeschooling umbrella. Language Arts is one of them. Fortunately, I used to be a writing tutor, so I’ve got some experience in figuring out how to teach someone to write. I’ve worked with ESL (English as a Second Language) students, dyslexic students, and other students with special needs. But Nigel is my first autistic student.
Last year, I started off teaching him to type, which went very well, and then he wrote a few small paragraphs as reviews of educational videos he had watched. The trouble started this year when I had to explain to him that cutting and pasting paragraphs from Wikipedia articles was not an acceptable way to write an essay. But if I stop to think about it, that way of learning to write is exactly the way he learned to talk – by using words he had heard somewhere else. Yes, with writing it’s plagiarism, but I like to think of it as “echolalic writing.” So, just as he learned to talk when his speech was predominantly echolalic, I slowly guided him to use his own words in his writing. We began with a narrative essay, then an imaginative one, both three paragraphs long. Once he realized that he could write a full essay with his own words, I then upped the ante to a five-paragraph persuasive essay. He chose the topic – Stricter Rules Against Bullies. I helped him draft an outline, and then he typed the first draft.
One of the necessities of a persuasive essay, of course, is addressing the opposing viewpoint. Nigel, with his theory-of-mind challenges, declared, “I can’t mind read! How should I know what the opposing viewpoint is?!” And of course, that made all kinds of sense, coming from an autistic mind. I should have realized that the concept would have been difficult for him. After explaining that he should try to think of how he would feel if he were the other person, I realized that I was getting nowhere, and Nigel was only getting more frustrated. I finally had a brainstorm, albeit an obvious one. “Nigel,” I said, “read one of your reasons that you listed for why there needs to be stricter rules against bullies, and think of what you would say to someone who disagreed with you.” He took that and ran with it.
It’s Spring Break now, so he’s not writing, but when we get back to it in a week and a half, he’ll be working on his first essay involving research and citing sources. It’ll be a challenge for him, and will probably take him a few weeks to do it, but I think he can. I remember when he was not functionally verbal, and how glad I was that he could read, even though it was hyperlexia. I thought how wonderful it would be if he could learn to write, since he could not speak much, and he then could communicate by writing. I remember thinking that if he could write, it would liberate him to no end. And even though he can talk now, I still feel that way about him writing. He may have some difficulty with conventions, transitions, and thinking of good topic sentences. It hurts his hand to write with a utensil, which is why I knew I had to teach him to type. But now he’s writing, and that will take him everywhere.
Executive Compromise
A short conversation with Nigel last night –
Me: Nigel, you really need to clean up your room. I can’t even see the floor in there.
Nigel: The floor is purposeless.
Me: No, it is not ‘purposeless.’ The floor is for walking on to get across the room.
Nigel: Walking is purposeless.
Me: You’re not making sense. Of course walking has a purpose.
Nigel: Well, it’s too hard to clean my room.
And so, the room-cleaning saga continues. Some of you may recall the ideas I came up with in the past to address this issue, such as listing specific steps to clean the room, making chore charts, using positive and negative reinforcement, and trying to inject humor into the situation. All of those things worked a few times; none of them work now. With five full inches of trash, clothing, books, DVDs, papers, and Lego strewn across his entire floor, I had to dig deeper to come up with a solution.
I remembered Mama Mara’s post from a few months ago discussing the concept of executive control and her son’s room, and I used that to fuel my search. I searched for more about executive control/function, and specifically, cleaning up rooms. I found a video on Autism Children Now that was quite helpful. The subject, a woman with Asperger’s, discusses the fact that ASD individuals have a different perception of what is organized. It reminded me of the following exchange I overheard between Nigel and Aidan a few years ago:
Aidan: You’re using my toothbrush, Nigel! Mine’s the one with the stickers on it.
Nigel: Sorry, my brain is not good with memorizing things like that.
Aidan: That’s because you’re not organized!
The Aspergian woman in the video maintained that when it appears that autistic people’s living areas are disorganized, the spaces aren’t disorganized to them. They know where everything is. And while I am sure that this is true in many cases, unfortunately it’s not with Nigel. He doesn’t know where everything is. Things get lost in his room, swallowed up. Last weekend he had an overnight Scout camping trip, and while packing he could not find his flashlight, compass, Swiss Army knife, or even any socks, all of which were buried. We had to go out and buy these things at the last minute, which did not make me happy. I could dock his allowance for these items, but that really doesn’t help him to learn how to be more organized.
What to do? The woman in the video made an important point: compromise is the key word. Compromise on organization, and do not be abstract in your instructions. I can’t just say, “Nigel, you need to organize your room better.” What I can do is compromise on the things that I want him to have organized. For example, I can have him agree to the following:
- Daily trash pick-up, every evening at the same time
- Socks go directly in laundry bin when taken off
- Scout items or other easily lost items put in a designated spot
I would love to have him clean his room thoroughly every week, but I know this is not possible for him. I would love to have all of his clothes in his dresser, closet, or in the laundry instead of on the floor, the books and DVDs on the actual shelves that are set up for them, the papers in stacks or files, and everything organized the way the rest of my house is. But there’s no compromise in that. With the 3-step list, he won’t feel overwhelmed, and I don’t have to hear “I don’t have any socks” or “I can’t find my flashlight/compass/scissors/wallet” anymore. And, if I’m really lucky, I won’t have to wade through five inches of trash to tuck him in bed every night.
My First Blogoversary!
One year ago today, I wrote this post, and then I was so excited that I wrote another post on the same day. One year and 238 posts later, I’m still excited.
A year ago, I went online and searched “teen autism” and found just a few items. I had been reading the blogs The Simple Dollar and Dooce for a bit, and I thought that I could do something like that about having a teenage autistic son. I wanted to create a website that could be a resource for other parents of autistic kids and also connect with those parents, because a year ago I did not know even one other parent of an autistic child. I had reached my isolation limit, and I knew that I needed the advice of others on this path, and a connection with them. I bought WordPress for Dummies and found a super host and thus Teen Autism was born.
Since then, I have been blessed to have crossed virtual paths with many other supportive parents of children with autism. They have offered tremendously helpful advice, thanked me and encouraged me in emails, and even traveled to connect face to face. I have become a Chapter Rep for the Autism Society of Oregon, attended informative seminars, and even had my writing on autism and puberty translated into Turkish by a reader in Istanbul whose friend had no resources there. I feel like I am truly accomplishing what I set out to do a year ago, and will continue to. I want to thank all of my readers out there, whether I know you or not, for sharing in my life with my sons. I appreciate your support so much.
And now, without further adieu, I present the 5 Most-Viewed Posts of this year:
- If I Blogged 10 Years Ago
- Brain Wave Therapy
- 5 Best Comeback Lines for Comments or Stares
- Yearbooks As Art Therapy
- When Autism Does Not Equal Liking Math
Thanks for reading!
An Open Letter to My Son’s School Administrators
After a fifteen-month hiatus while homeschooling, Neil started back part-time at the local public school this week. How has it gone for him? Today was Day 3, and I had to write the following email, which was sent to the school’s special education coordinator, the district’s special education director, the regional autism consultant, and his social skills class facilitator:
Everyone,
I wanted to bring a concern of mine to your attention. Today when I picked Neil up after lunch, he came out to the car twirling around in the parking lot with a sheepish look on his face. Apparently a group of girls had been hanging around him at lunch, and they told him that another boy had “stolen” someone’s cookie, and that he – Neil – needed to “do something about it,” even though Neil had nothing to do with the situation (which I think was contrived). So Neil said that he chased the boy around to impress the girls, because they encouraged him to. This is just the sort of social problem that causes concerns. Neil is usually fine in class where it’s structured and supervised, but these problems come up at lunch. The kids are not overtly being mean, but they take advantage of both Neil’s trusting nature and his yearning to be accepted, and they get him to do things that either make a fool out of him or get him in trouble. After Neil had chased the kid around, one of the girls linked arms with Neil and walked somewhere and kissed him, in front of others. These kids are having fun at Neil’s expense, even though he doesn’t realize it because of his autism.
So I talked with him about a) not chasing anyone around for any reason, and b) not doing things kids tell him to do when he’s at lunch. If this continues, not only will he wind up getting in trouble, when it was not his idea in the first place, but it’s continuing a vicious cycle of using him for entertainment – he told me that the girls actually told him that he was “entertaining.” I do not want my son used in this manner! This has happened before at this school, and I’m upset about it happening again. Is it possible for situations like this to be role-played in the social skills class? Neil needs to be able to recognize when his peers are using him for entertainment, since the school doesn’t seem to think it’s important to teach the non-autistic kids not to take advantage of those with social difficulties.
The risperidone is helping Neil, and he is making such an effort, is so motivated to get back, and he has to deal with kids who try to make a fool of him and get him in trouble. This is why I mentioned the Circle of Friends program at the meeting last week, and why I think it’s so important to implement something like that. The school needs to foster awareness and compassion for students with social difficulties. No one would dare treat someone that way who’s in a wheelchair, so why does the administration say things like “this is a hard age” when someone who does not have a visible disability is targeted? This issue needs to be addressed. I realize that Neil will be moving on from this school soon [because he is in 8th grade], but he has four more years in this district with the same peers, and there are others coming after him who would also benefit from a program like Circle of Friends. How can we go about setting this up?
Thank you,
Tanya Savko
The good news is that within a half an hour, the district special education director sent me a very supportive response thanking me for notifying her, telling me that she would meet with the school principal tomorrow, and, most importantly, assuring me that she is “committed to making this work for Neil.”
It sometimes takes awhile – we were having these school issues two years ago – but the squeaky wheel eventually gets the grease.
The Bright Side
The Scene: Interior of a meeting room attached to a church – a Boy Scout meeting is in progress. About a dozen Scouts sit at four tables scattered throughout the room. Some parents sit at a different table off to the side. The boys are focused on the Scoutmaster, who is standing at the front of the room talking about foods that are appropriate to bring on a camping trip. He recounts an incident when one troop brought a huge bag of plain oatmeal for their only food for the entire trip. He tells how it rained that trip, and the oatmeal soaked up the rain, so the Scouts had nothing but bland, cold oatmeal to eat. The Scouts at the meeting make faces and sounds to indicate their feelings of distaste and their sympathy for the Scouts with the oatmeal. All except one. When the other Scouts quiet down, he pipes up.
Autistic teen: But it does prevent heart disease.