Wish list item: An Autobiographical Memory

Photo: Marilu Henner, of Taxi televison fame, has an extraordinary ability to recall memories.

I've been joking around here on this blog lately about being "super mom," in the sense that my tongue is usually in my cheek when I put those two words together...super and mom I mean. But wouldn't it be nice though if Santa Clause was real and could, if he wanted to, grant hopeful parents some real super powers?

This super mom might be skeptical about Santa, but she does believe extraordinary powers/skills do exist among us mortals. There does, after all seem to be proof of this out there. For example, last night an episode about autobiographical memories appeared on the CBS television show 60 Minutes.

Having an autobiographical memory means one can recall just about every moment of their lives in minute detail. Ask an adult person with a superior memory about a day ten years back and it is likely that he or she will be able to say what day of the week it was, what the weather was like, and maybe even what they had for lunch. To that person, it would be like recalling something from yesterday. (Wow. To me, this ability seems like a super power!)

Those of you familiar with autism spectrum disorder (ASD) might already be be thinking about autism or Asperger Syndrome, because some people (but not all) on the spectrum are known to have extraordinary abilities to recall specific things when asked. However, when it was brought up that some people automatically assume they have ASD, the people featured on the episode all sort of laughed the idea off, though some admitted to having traits of obsessive compulsive disorder(obsessive hand washing and/or organization), a disorder that many people on the spectrum are known to have.

It should be noted that the laughter that occurred when the topic of ASD came up wasn't offensive. In fact it was a reminder that one shouldn't assume a person has the disorder just because he or she can recall everything. Same goes for the notion of assuming that everyone on spectrum has this extraordinary ability.

Another assumption is that this trait is one to envy. This may or may not be true. I suppose it depends on the person. Five out of the six people featuers seemed to enjoy having a superior memory. However, there seemed to be a downside to having this trait. Only one individual out of of the six was married and she admitted to being on her third marriage. Also, one of the six people featured refused to meet the other five because she finds having this ability to be painful.

As for this "super mom" of a boy with autism and kidney problems, I think I would find this ability to be very handy. Although it wouldn't be pleasant to recall every single meltdown, it could be helpful to remember all details surrounding the event such as what my son ate and or what happened before the meltdown occurred.

It also would help with keeping track of an extraordinary amount of medical details accumulated over the last twelve years. Last week I was drilled by a neurodevelopmental doctor for nearly an hour and fifteen minutes. As a whole I think I did a good job answering questions about my twelve year old son on the spectrum.

However, there were times I was also a bit frustrated. An example of a frustrating moment was when the doctor asked me when we saw a geneticist. I couldn't remember exactly, though I knew where I could find the information. It is right here, and I told them that, noticing that there was a computer in the room. The doctor asking the questions and the two others in the room weren't impressed, nor were they interested in moving toward the computer. At that moment, I really wished I could recall that information or at least to pull it from a highly organized file on my lap (unfortunately I am NOT a super mom when it comes to being organized.)

Well, I guess I am not going to hold my breath in hopes that Santa will magically give me the ability to recall most details in my past. Instead, I will tell myself that only tiny segment of the population has the gift to remember everything. I'll also tell myself that not everyone has the super skill to be super organized. Though they would be helpful, one doesn't necessarily need these skills to be a good parent. I might not quite believe in Santa, but I do at least, recognize the need to believe in myself as a parent and a wife, and a caring person in general.

So instead of making an impossible wish or giving myself a super kick in the rear end for not knowing it all, I'll hold my head high, be happy about what I could remember at that appointment and move on in a positive direction as a wife and a "super mom." I'll also be happy that I typed a report of all the important details of the appointment as soon as we got home. That will have to suffice. Merry Christmas Everyone. :)

Review: 1,001 Tips for the Parents of Autistic Boys

Lately I've been joking around on this blog about being a "super mom." Around the time I started doing that (earlier this year) I'd often think to myself that when my "super boy" (my twelve-year-old son with autism and kidney ailments) was born, I should have been handed a hefty manual explaining how to raise him. After all knowledge is power.

So if one wants to be a super parent with a lot of power to raise a super kid with the often confounding diagnosis of autism, one has to acquire a lot of knowledge. This super mom gained a massive amount knowledge by reading tons of articles, blogs, and published books, such as Thinking in Pictures by Temple Grandin.

However, it would have been nice and even time efficient if a great deal of the knowledge this super parent acquired would have been nicely assembled and packaged back around the year 2000. Today's parents of newly diagnosed super kids are a bit luckier.

An approximately 455 -page book, 1,001 Tips for the Parents of Autistic Boys: Everything You Need to Know about Diagnosis, Doctors, Schools, taxes, vacations, babysitters, treatments, food and more by Ken Siri has been published. It is one of books out there that most resembles the manual I have had in mind. (However a similar book, 1000 Great Ideas for Teaching and Raising Children with Autism Spectrum Disorder by Veronica Zysk and Ellen Notbohm, was first published in 2004 and has been recently revised.)

Obviously one book cannot reveal everything there is to know about autism, but it's nice to have a source on hand that can be consulted quickly. This super mom also suggests that this book be seen less as a "bible" and more of handbook of advice. The advice in this book should be viewed as well intentioned because this book was obviously designed to be helpful. But there are 1001 tips included in this book so not every tidbit will fit everyone. Further, some advice such as the three tips (788-790) on cutting finger nails may not suffice for those super kids with hypersensitive hearing, touch, and a sleep disorder that makes trimming nails while the person is asleep impossible.

Despite that, this "super mom" does think this book is "super!!" because it was assembled with parents in mind and features tips from parents (a fun fact is that tips 974 to 976 are from a post I wrote and originally published on this blog). Other sources of tips include the likes of Grandin and Tony Attwood. One of the the best aspects is that the paperback book is affordable. At Amazon it is priced at $12.21 (U.S.).

This super handbook is also organized by topic so that tips that may not apply (my child does not have problems sleeping, for example) can be easily skipped to more applicable chapters. As for me, I sped read through the diagnosis chapter and read chapters addressing puberty and sexuality much more closely. (My boy is 12, so yes I thought those tips to be most helpful). The book is also easy to read, which is a bonus for us "super parents" who are super stressed.

On the downside, some parents may find parts of this book to be controversial. Others like this super mom writing this review might be merely wary. For example, one tip advises against using acetaminophen (used in products like Tylenol), but I have to avoid giving my guy who gets frequent headaches ibuprofen because of his stage 2 kidney disease. (Acetaminophen is processed through the liver, but ibuprofen is processed through the kidneys.)

On the bright side,there is a responsible disclaimer by the author indicating that the book wasn't written to provide parents with medical advice and that all tips were meant to merely provide information. Siri also correctly noted in his Author's note that "Autism is a spectrum, and all children with autism are different. [...] What works for one child, may not work for another."

That said super parents who embrace the biomedical approach to autism will be the most likely to readily accept this book because it has a heavy emphasis on biomedical treatments. Because aspiring "super parents" who are just starting to acquire knowledge about their newly diagnosed child's disorder will most likely be reading this book too, it should be noted that the author presents all tips matter of factly and does not make mention of the controversy surrounding the belief that vaccines cause autism.

This blog author prefers to regard information about vaccines cautiously and examine the arguments of both sides, so it is important to me that parents realize there are a variety of beliefs about vaccines and other biomedical treatments. Although I endorse this book, I encourage aspiring (and established) super parents to keep reading about issues, treatments and other topics regarding autism. One can never learn enough about this complicated disorder.

Siri's pro-biomedical beliefs are reflected throughout the book and are not confined simply to the chapters on treatments. However, this is not surprising considering that Siri is the co-author of Cutting Edge Therapies for Autism. Despite what a parent believes about certain issues, I believe it shouldn't be passed by because the bias reflected. This book and its counterpart has loads of useful information for all parents and should be given a chance.

Note: This review is part of a blog tour for 1001 Tips for the Parents of Autistic Boys and its counter part 1001 Tips for the Parents of Autistic Girls. More opinions about this book (as well as the one written for girls) are available at the website 1001 tips for Autism.

Another School Change

C1, or super boy as I sometimes call him, has changed schools again. The school team and I have done our best to find a place where he'll feel more comfortable than where he was at. He started a Life Skills program on Monday, and he had a very good week.

This is nice compared to the time not long ago when I felt like I had to wait around the house all day waiting for the inevitable call to come pick him up. Usually, I got the call before 11 a.m., which indicated something wasn't right since this happened almost daily.

The school where he was at had a resource room, but it was not equipped to handle my son's level of need. They tried giving him an aide, but that didn't work out so well either. He was supposed to spend a lot of time included in the general education classroom, but it was evident by his behavior that he couldn't handle that environment.

So we're trying a new school with a program that seems to be better designed to fit his needs. As far as transitions go, my son doesn't seem to mind big changes like changing schools. It's the smaller transitions like changing classrooms that can get to him.

I am glad and really relieved that my super boy has done well with the change so far. His most difficult challenge was getting past his rigidity against starting a middle school housing grades 6, 7, and 8, as a fifth grader. Somehow we got him to change his mind and he agreed to go.

My worry is that C1 usually has a grace period before his behavior falls apart at school. I'm hoping that this time it will be different. We have more supports in place for him as well as a behavior plan that resulted from a functional behavioral assessment that the autism consultant in our district completed. Please keep your fingers crossed for us.

Super Mom is Overwhelmed

It's been a while since this "super mom" has blogged. Mostly, it's because she has been completely overwhelmed. In other words, she's feeling less than super right now. I think all parents, especially parents of children with disabilities, get to the point when it's hard to keep up with everything. This super mom has been buried in an array of paper work for various doctors we're seeing, going to the resulting appointments, while also going to a series of meetings at my son's school because his current educational set up is not working for him.

She's been doing all of this because things have been more than a bit rocky around here. A common saying is that actions speak louder than words. To this super mom's utter dismay, her super boy has not been behaving in a super manner at school. The culprit is most likely anxiety which is probably stemming from a entrance into adolescence (my son is 12), a change of location from Michigan to Washington, a change of schools, and a saddening realization that he's different from other students.

Fortunately we have found a bevy of super sidekicks to help us in this very difficult situation. Besides the team at my son's school, these professionals include a therapist (whom my son really likes), a psychiatrist (who is excellent), a few moms (whose years of experience working with their own children and advocating for others can qualify them as professionals in my opinion), a neurologist (who'll we'll see in December), and even an allergist to determine whether certain foods are agitating his system. At the advice of the psychiatrist, we'll probably also add a behaviorist and some medication to our arsenal that we are assembling in order to help Super Boy cope with the world better.

I found a article on autism and anxiety that I thought hit the mark pretty well. I liked how it mentioned that the best tools that parents can sue to help a child cope with a change are preparation and anticipation. The article also mentioned medications. Medication might not be for or endorsed by everyone, but I know of some families who have benefited from prescriptions prescribed by psychiatrists.

My son has a single kidney so I've been avoiding considering medication up to this point due to concerns for his health. However, we're at the point where we need to try medication. It's called crisis mode. We're surviving so far, but are ready for things to get better. In the meantime, I'll try to blog when I can. Don't give up on the super mom yet. She still has a lot more to say and more posts will surely be coming in the future.

The Ultra Modified Assignment on Heroes

At the end of 2009/10 school year, this "super mom" and C1's Super teachers (general education and resource room) did their best last Spring to get C1 to do as much of a two part assignment on heroes as possible. The assignment came during a year when C1's behavior had been less then super.

Super mom attended trainings all that year that taught school teams and parents how to help children on the autism spectrum succeed. She attended September through March, and then proceeded to move with her family across the country. By the time she reached this new school, where the hero assignment was given, she concluded that C1 needed to be included in a general education environment, and that the focus should be on good behavior rather than output. (C1 had been refusing to do school work for most of the year).

For one part of the assignment, students were asked to research and report on either a historical hero or a public figure who is shaping current history. Figures like Martin Luther King Jr., Hellen Keller, and Albert Einstein were chosen. Finding a costume to wear while presenting the report was also part of the assingment.

The second part was to choose a personal hero. Many chose their mom or dad. Then students created a book about their hero. The fourth graders then invited their personal heroes to the school so that they could hear see the student all dressed up as the respectively chosen historical figure while listening to the reports. The teacher and students also invited all the personal heroes to a reception in their classroom afterward. The kids then gave their books to their respective hero at the reception.

To make a long story short, Super mom was delighted when C1 got up in front of a crowd to read a six page (the pages were small) report on Barack Obama. That was the good news. The not so good news was that she could tell that the school team wasn't as impressed (not that she blamed them, because they had not been in our shoes, so they really couldn't have known just how difficult the year had been).

Super mom knew they weren't impressed because reading the report was the only thing C1 did. He didn't research the historical hero. He didn't dress up. And he didn't write a book on personal heroes. However, he almost also didn't read the report, and if he hadn't of done so then this exhausted mom's morale would have become completely deflated.

Yes, I realize that we have a long way to go from that minimal success. However, at the time I really needed to rejoice in the wee bit that was accomplished and not the vast amount that went unfinished. In time I hope we can all expect more output from C1. Assignments for kids with autism often need to be modified, but maybe not so much to that extent. However, at the moment, the circumstances were extraordinary. Perhaps now that we have settled in more, maybe more can be expected from C1.

So with my morale intact, I'm gearing up to face a new school year that begins in exactly one week. C1 one usually does great with compliance at the beginning of a school year, so there is some hope that the year will at least start out well. I'll also take time to see if addressing possible medical needs will help, because one's health can affect one's behavior. Hence we will see a few more specialists.

That said, there probably won't be any more hero assignments in the near future, but let's hope that the journey of our"hero" (C1, the figure that seems to dominate this blog) will have much more success at school in the future.

Cape Optional: the ten must haves of a super parent

Anyone can be a super parent. Whether it's of a special needs child or a healthy one who is developing typically. Don't despair, mind you, if you think you come up short with one or more of these attributes. After all, we're human, not supernatural. We shouldn't expect to be perfect parents. Aspiring to be as good as you can is enough. As long as you try. So here we go, capes or no...

The list

1. Love. Can't quite be a super parent without it.

2. Compassion/Empathy. Being able to see a child's viewpoint from their situation helps a parent to react to their children in a more positive way. For example, that loud noise might not bother you, but may hurt a pair of super sensitive ears, therefore causing some behaviors in public.

3. Adaptabilityy. Having children changes your life, whether these children have special needs or not. We all have to adapt...some of us more than others.

4. A thick skin. This means not being over sensitive to what people might say about your child/children. Fortunately this skin is invisible and can be developed over time. A thick skin is especially important for those of us with children who have special needs. The more time that passes, the more likely you'll be to hear something painful from other people who do not understand. Try not to think of it, and focus on something more pleasant instead. After all, whose opinion is more important? Yours or theirs?

5. A super sense of humor. Being a parent means having a few or more not so great moments with one's child. It's better to laugh than cry. I once took a knee in dog poo trying to help my child. It wasn't funny then, but can laugh about it now.

6. Accountability. No matter what they do, we have to be accountable for our children. This means not making excuses, but taking action and responsibility for your child. Me to a school principal: "Yes, I know [leaving this part out for privacy purposes] is not acceptable behavior. He does have autism and doesn't understand the consequences of such actions, but we don't condone that type of behavior in any way. We'll work on it."

7. Patience. I think all children can test a parent's patience. Some of us are born with more patience than others. It's possible that this might be the hardest skill to attain/maintain.
We're all human and have our breaking points, but if you want to be a great parent, patience is probably one of the most important skills to have.

8. Organization. This skill can be a great asset to any super parent. I envy those who were born blessed with this skill. I'm still learning, but we'd miss a bunch of doctor appointments if I didn't have somewhat of a system. Fortunately keeping a calendar helps. Now if this "super parent" could be even more super by being able to make up and maintain a visual schedule for her child at home....sigh.

9. Ability to solve most problems. Sometimes when you solve one problem involving a child, another pops right up. Problems, especially problems with children with special needs, seem to pop up like weeds, so it helps to have the ability to solve them.

10. A good pair of feet clad with running shoes! These can come in handy when a small child or a child with special needs takes "flight."

Note: If you have all these skills, then kudos to you. However, as I said, don't despair if you come up a bit short. I don't believe in the perfect parent phenomenom. Any one can aspire to be a super parent if they try. The bright side is that if you have at least six of these, you are more than halfway there into becoming a super parent...or maybe even further than that if you have skills not mentioned here.

This list is just a starting point...

What other skills can be attributed to super parents? Let me know! : )

Update: Super C won't be Morphing into a Super Traveler

Note: This is part of a thread about the (inclusive) day camps that this blogger's son was signed up for. Please see the previous two posts if you are new to this blog. : )

Super C was unable to maintain his super status at super hero day camp. This was evident on the fourth afternoon of a five day camp. Super C literally left the building and decided to go home on his own due to protests of those helping to maintain the safety of him and the other campers. After some thought and consideration and some input from the camp staff, Super Mom decided that it was best to cancel day camp number 2. So Super C will not be morphing into a super traveler this year for the Around the World day camp that is being held in August.

Super mom is pursing leads to inspire and help Super C to pursue his super status once again. While she is currently avoiding the stress that comes with worrying about the behavior of her son in social settings away from home, she is determined that Super C will have some future opportunities. She just needs time to figure out how to help her son minimize some behaviors that make being in an inclusive environment rather challenging for everyone involved.

Update: Super Hero Photos

Photo: Super C's Costume with SC at bottom. He modeled it at home.

Update: Super C went Missing in Action by day the end of day four despite a promise that in the morning that Super C with his super behavior would stick around all day. Even though Super C promised in the morning of day four, Super Mom was hailed to come to the rescue by the end of the day. This resulted in Super Mom deciding that Super C should stay home for the last day of camp. She believed Super C disappeared because his alter ego (C1) needed a break.Photo 2: Super C's sidekick (his little brother) took over modeling duties because Super C didn't have much patience with posing in costume, which probably is not super comfortable to wear... Little C2 does look cute, but it doesn't look like either the hero or the sidekick will don the mask or cape anytime soon...

Note: Super mom is hoping that day camp number two for C1 will go well, or at least that he'll have a good three out of five days. She'll consider letting C1 sit out day five again if necessary. A journey (going around the world) will be the focus of that camp, which is also put on by the parks and recreation department in our current city.

Super Hero Day Camp

Note about Image: Plastic Man was chosen because this "Super Mom" has to "stretch" quite a bit to keep up with "Super C", her super kid on the autism spectrum.


Note: I am going to be exploring the theme of heroes in the next few posts. Most of the time, this author's eleven year old child is known here as C1, though for the time being he'll be "Super C!" Please stay tuned for more...

Super Hero Day Camp!!!

Tomorrow is day four of Super Hero day camp in the community center at our local park. It runs from 9 a.m. to 3 p.m. and is just on for this week. So far, so good. His behavior was great the first two days, though day 3 was a bit tricky at first.


"Super C" has an aide (assigned by the special needs specialist in the parks and recreation department). Todaywe decided it was important for her to stay in the background. "Super C" knows when he stands out as different, and he probably noticed that the aide made him stand out amonst the rest of the kids. Yesterday "Super C" transformed into the "Ring Man" who tried to put "Super Aide" in" jail" with a hula hoop. He was almost obsessive about it.

It got "Super Mom" to thinking...Is "Ring Man" the villain we need to look out for? Maybe... Whatever the case, "Super Mom" is hoping "Super C1" will rule the week. The strategy is for Super Aide to lie low and to appear only when "the Meltdown Monster" threatens to emerge or when it is obvious that Super C needs a break to keep from getting overwhelmed.

As stated previously, "Super C" had a little trouble this morning. Luckily "Super mom" was still in the playground outside with C2, a non hero participant when a ruckus errupted outside. Using her "super ears" she was able to identify the aggitated voice of her offspring immediately.

It wasn't easy, but "Super Mom" and "Super Aide" managed to calm him down so that he was able to participate for the rest of the day. The young super heroes and their super staff took a tour of a park across the street which has a fish hatchery. Super aide told me that Super C enjoyed watching the trout being fed.

Somehow "Super Mom" was able to take C2 out for errands and then on to picking strawberries five miles out of town. It wasn't easy for her to let go of the anxiety that the "Ring Man" or the "Melt Down Monster" might appear. The super cell phone was on hand and a quick stop at home between errands and strawberry warranted a check of the voice mail. The Super Subaru would have "flown" back to the park at any hint of trouble.

At least the first two days went by relatively seemlessly, despite the brief debut of "Ring Man" on Day 2. The young super heroes made super hero masks out of paper mache. "Super C" came home yesterday with paper mache goop on his shoes and pants. "Super Mom" cleaned them off the best she could this morning using a scraping method with a handy super tool.

The good news is that "Super C" managed to particpate and created a green mask, which is his favorite color. It looks a little small, but it might fit him. They are going to dress up in full super hero gear on Friday. A picture may or may not appear here, depending on a number of factors, such as whether "Super C" will be able to stay at Super Hero camp.

In the meantime, if you so desire to create your own super hero, please check out this link. Enjoy. : )

This Blogger on "Square One" Awareness

Photo: C1 participates (sort of away from the crowd) in a watermelon eating contest during a neighborhood party. He didn't really "race" but at least he joined the activity. : )

It's June 2 now and just two months past Autism Awareness month. April 2010 was the first time in a few years that I haven't helped my group in Central Michigan raise awareness about Autism Spectrum Disorder (ASD) in the community. Unfortunately I didn't blog too much either. I had a good reason. My family and I left Michigan on March 22 and arrived to our new home in Washington on May 29.

Moving didn't mean I was totally excused from autism awareness. I've been actively involved in what I'm referring to as "square 1 awareness." What I mean by that is not so much explaining autism in general, but rather explaining how autism affects my oldest son. My ongoing mission has been to educate our neighbors and my son's playmates and teachers as well as our neighbors. Most people around here seem to know about autism in general, so mostly I've had to explain how autism and my son in general (for example, his quirky habits, what causes him to melt down, and what does and doesn't motivate him.)

My first step was to talk to the educators at the local elementary school since my son was to start school about a week after we moved. Talking to adults about autism and my son is fairly easy for me and I felt that what I had to say about him in terms of ASD was well received. That took a few hours, but I enjoyed talking to them and my efforts seemed to have paid off as things are going as well as we can expect them to go.

I found it to be harder to explain to the neighbor kids. Usually I don't say anything to children about C1 until something comes up. So on a sunny, warm day when my son kept insisting on everyone (two other boys and my younger son) playing inside instead of outside, I had a bit of explaining to do. My younger boy, C2, and I both explained that C1 has autism. That didn't change their minds about playing outside (I didn't expect it to), but they seem to still accept him to a certain extent. Eventually, my son did join them outside, but it took awhile.

The kids I talked to on that day live on our street. There are also a few who live on the street behind us. My husband took up the job of "square one awareness" when a middle schooler mentioned that my son "was a little bit different." After my husband told him that C1 had autism, the boy said that "no one around here would give him a hard time." That made us feel pretty good.

So yes, now the majority of our neighbors know. A lot of times we volunteered the information to the adults just in case they saw him running down the street screaming on a bad day. "Meltdowns aren't too pretty," is a line I use often when telling neighbors about how autism affects my son.

When we told one neighbor at a recent neighborhood party, he addressed our tendency to volunteer information by asking us if we were concerned about prejudice. We said no, that it didn't happen too often. We didn't say it, but what we really fear is prejudice developing because we didn't do our job. Fear and prejudice often develops as a result of a lack of knowledge and/or communication. So far, we think we've done our job of "square one awareness" pretty well and feel accepted into our new community.

However, our awareness work is far from over. The next step is educating an array of doctors, therapists and others (such as summer camp counselors) who will work with him in the future. As I have previously explained, it is not easy to get an intake (first) appointment with a doctor around here (much to my dismay) and we have to wait until July an appointment with his new pediatrician. However, our first appointment is with a therapist the third week in June.

I spoke to the therapist, a psychologist, yesterday and disclosed some details about my son so that he will understand better to work with him. It seemed to go pretty well, but we'll know a little bit more about how it will work out after the first appointment. So, yep, this new phase of square one awareness has already begun. It will go full strength ahead through the summer. We have a lot of appointments and even a summer day camp in July. Wish us luck as we continue our mission of awareness! : )

The Horse Boy: A free viewing co-hosted in Central Michigan

Having had my own child with autism enrolled in the Proud Equestrian Program for years, I am hoping to one day get a chance to read The Horse Boy: A Father's Quest to Heal his Son by Rupert Isaacson.

Further, I am a bit envious of movie goers in Central Michigan who will have the opportunity to see the documentary, The Horse Boy, for free tomorrow night, May 12, at Celebration Cinema in Mt. Pleasant, MI, 7 p.m. The event is being co-hosted by the cinema, WCMU, and the Central Michigan Autism Group (the awesome group that I was the secretary of before moving to Washington). A panel discussion will follow the one-hour film and free information about autism will be passed out.

The documentary was directed by a young filmmaker, Michel Orion Scott. Set in Mongolia, it is a travel adventure that provides insight into shamanic healing as well as a look into the autistic mind. The Isaacson's story was inspired by Rupert's experience with travel writing and their son Rowan's connection with horses. After trying several different treatments to help Rowan, his parents noticed that horse riding was the only thing that seemed to work. The Isaacsons realized that Rowan was calmer, expressed joy, and was able to give verbal directives while on horseback.

This is perhaps one of the most creative methods of coping with autism that I ever have come across. In fact, Rupert Isaacson had such a creative idea that he had no trouble getting his story told (check out the link to this excellent NY Times article for information about Isaacson's proposal and its acceptance).

I hope that there is a good turnout to see The Horse Boy in Mt. Pleasant. It seems to be a fascinating story and I'm sad that I won't be able to attend the event, which is the result of some of the fundraising activities I participated in for my group. That said, for those of you who live outside of Central Michigan, the book ($16.49 U.S.) and the documentary ($27.49 U.S.) are both available on Amazon. Of the book, Temple Grandin writes "This is a great book and everyone who is interested in autism, animals or different cultures should read it."

Author's Note: I realize that some people may object to the notion of seeking out healing (Rupert Isaacson deliberately replaced healing with the word "cure" in his title.) However, as a blog author, I realize that people have different ways of coping with autism. I feel it is not up to me to judge what is the right and what is the wrong way coping because the method that people choose has to do with their circumstances, beliefs, and the individualized aspects that influenced those beliefs.

So, some people accept their children with autism as they are. Some people seek out doctors and or various popular therapies such as Applied Behavioral Analysis. Some people (like me) embrace a mixture of therapy, experiences, and acceptance, and some people, like the Isaacsons, go on fascinating and extraordinary journeys.

P.S. The Horse Boy is scheduled to air on CMU Public Television as part of the PBS series "Independent Lens" in May of 2010. This screening event is part of the ITVS (Independent Television Service) Community Cinema program. Free screenings of Independent Lens films are held at a variety of locations through June 2010. See here for more information about the film and/or the event being held tonight.

Wemberly Worried and the First Day of School

My youngest loves Wemberly Worried by Kevin Henkes so much he has chosen it three nights in a row for our bedtime story routine. It's a cute book about a little mouse who worries about everything, especially her very first day of school. The main idea of the story is that Wemberly didn't have to worry because everything turned out just fine. In fact she even made a friend. It is a comforting message for kids and yes, it's a comforting message for adults as well.

Julie Worried

I should have remembered this book when getting ready to send my kids off to school the last week of March. (For those of you new to this blog, we just moved from Michigan to Washington.) Anyway, I worried and worried and WORRIED. I didn't worry so much about my seven year old who is a well behaved student, is social and makes friends relatively easily. I worried about my oldest son who has autism and some learning difficulties. In fact, I worried endlessly.

Moving with a child who has special needs and getting him settled into yet another school (see here for an explanation), was on the top of the list of things to worry about in terms of our big move. Yes, he had changed schools many times before but it was always in the same district. This time I had no idea what we would encounter in terms of education.

Would the nearby school be a good fit? Could they accommodate him even though they didn't have a special education program at that particular school? Would we feel welcomed at the school or not so much? Would the team listen to what I had to say? Would I have the chance to say it? And most importantly: Would C1 would behave in an appropriate manner?

The main source of my worry is that C1 had behavior problems at his old school. Though he's not a child who likes school all that much, I think he acted out because he didn't like being in a self contained special education room. He wanted to be with the students in regular education. Before we moved, the team at the old school agreed that we should try it. It was working, but I was holding my breath hoping the new team would be open to it.

I will admit that my worry about the new school not having a special education classroom was quite needless considering my son doesn't like to be in one. I guess I wanted a safety net,. I also didn't have to worry about being welcomed and having my suggestions turned down by the school team. I talked to the school team for a total of four hours (two hours at a time) and my information was well received, including my thoughts about C1 wanting to be included in regular education.

To my relief, C1 was placed in a regular education fourth grade classroom as well as in a resource room where he gets extra math and reading help. I knew about his placement and that we felt welcome by the staff and administration before his first day, but still I worried.

I was all prepared to walk to school with my two boys on the first day to get them settled in. Instead, a neighbor boy whom the boys had met days earlier showed up to walk them to school. I was a bit skeptical of the whole arrangement, so I asked him some key questions. "Can you show them the ropes? It's their first day."

"Yes, I'm going to get a pass to take C2 to class and my friend will get a pass to take C2 to class," the third grader replied. This kid has it together I thought. I also was pleased because this was the first time both boys had a friend that would walk with them to school. My boys were pleased too and were more than happy to go without me.

The great start to the day did make me worry less, though I still wondered about the first day of school. How would C1's first day go? Well, a note from his teacher made my day. This is what it said:

"[C1] had a great first day at [school]. He did an awesome job following directions and having a positive attitude. Way to go [C1]!."

So the main idea of my story is that like Wemberly, I shouldn't have worried because everything turned out just fine. C1's regular education teacher, his resource room teacher, the playground supervisor and even the physical education teacher have all told me over a span of the last few weeks that he has done well.

C1 even told me last night that he likes his new school (though I will admit worrying because there is always a grace period with C1 whenever he attends a new one). As for me, I won't let my guard down completely, but maybe (just maybe) I'll start worrying a little bit less. Well I will try to anyway.

The First Rainbow

I might have been the first one to notice the rainbow which seemed to end in the nearby lake, but C1 (my son with autism) was by far the most excited of us all. He said the rainbow was "painted by God." This is remarkable since we don't attend church much. It was he who noticed that there were actually two rainbows (look hard and you will see it), which is a fairly common occurrence. I was so in awe of the first one, that I didn't see the second, but C1 didn't miss it.

C1 notices everything or seems to anyway. It's during these moments that I feel hope. He has had an unusual number of meltdowns lately due to some changes in routine resulting from week long guests and it became overwhelming for all of us. I feel like I'm recovering from a series of war battles.

This rainbow and his awesome perspectives about it came when I needed a sign of hope. Things outside of school are not going well. Today I called to get a new pediatrician only to find out that I'll have to call back in May to see if there is any openings for new patients. It's a concern because C1 has health issues that needed to be investigated as soon as possible. We need to see an allergist. We need to see a neurologist. And most importantly, we need to see a urologist and nephrologist. One usually needs a referral from the patient's primary care doctor to get into a specialist. I'm worried about having to wait to get a primary care doctor, so this rainbow is a small source of comfort.

This sign also comes at a time when I am realizing that there is a waiting list here in terms of any opportunities for children with autism. Online I found out about a place that provides various forms of occupational therapy, but due to the "large volume of requests," they asked that interested persons download an version of their new patient packet instead of requesting on by phone. Sigh. ( Yes, they probably have a waiting list, and further, we don't have our printer set up because C1 plays with it too much.)

Last but not least, I found out about a extended summer program for kids on the autism spectrum only to find out two weeks after inquiring about it that the program is filled to capacity. (But, I was told I can fill out paperwork for next year...) Sigh.

I thought that moving to a more urbanized area would be better for us in terms of medical care, services and opportunities. There was a limited number of opportunities in my former and much smaller hometown, but I (with the help of a good friend who also has a son on the spectrum) was able to tap into them without difficulty.

Do I need to meet the right person to help me? Do I need to keep trying? How long will it take to get everything that we need? Will C1 suffer from the delay in medical care?

These are all questions I would not be asking if we had not moved. But the reality is that we did move and now we have to start over in finding support and resources. I feel a little lost and am struggling emotionally. However, we moved to a beautiful area and I take comfort in that. I also take comfort that my son can also appreciate natural beauty, like that of a rainbow, or particularly, a rainbow over a lake...

Catching Up...

It's been almost a month since we've moved 2,411 miles from the state of Michigan to the state of Washington. Life has been chaotic to say the least. In fact we went Southeast (Athens, OH) before going Northwest for my niece's wedding the week we moved.


Both of my boys were ring bearers in the wedding and did a great job. They also did a wonderful job on their first flight although C1 had some trouble behaving in the three airports we were in. The moving sidewalks and the escalators were too attractive to him. He just wanted to do his own thing when we had specific places to go.


Life is getting back to normal now although we still have some boxes sitting around and are expecting my husband's parents on Monday for an extended stay. All in all, it's nice to get back in our own beds after sleeping in sleeping bags for a week in the house we are renting. It took a seven days for our stuff to catch up with us via a moving company. The day our stuff came was the same day the two boys started school. So yes, that day was especially crazy.


As for school, I think I was way more nervous than they were. I wasn't so nervous for my seven year old who makes friends easily. I was nervous for C1, who is in the fourth grade and on the autism spectrum. I wasn't sure how he would be placed or if he would take to his new school. To help with the transition, I spent about four hours (two, two-hour trips) talking to his team, which includes his teachers, therapists, the school psychologist, the school nurse, and the principal. I accompanied C1 on a field trip, which happened to occur on his second day of school. (C1 loves field trips and especially liked the one to the Mt. Baker theater in Bellingham one because it featured a musical group, Scrap Arts Music.)

So yes, so far all is going well in terms of school. C2 is doing beautifully as expected. C1, according to his two teachers is doing well too. I hope it's not a grace period. We've switched schools before and a lot of times there is a calm before a storm.

The school arrangement is something new for C1. He's spending part of the day in a regular education fourth grade classroom and part of the day in a resource room. In the previous school district he also spent some time in a regular education room, but the majority of the time was in a self-contained classroom for mildly impaired students. To say that C1 didn't like being in a special education room is a understatement. So I'm hoping and praying that this new arrangement will be a great blessing.

In terms of making friends in our new community, both boys have more friends than I do. I haven't really had time to do that yet, though I've met some other nice moms. Next on my to-do list is to find a good pediatrician. With C1's health issues, I am hoping that I can find a good one.

I hear it takes about a year to settle into a new location. I moved five times in fifteen years so I believe that is more or less true. So far I'm impressed with how well both boys are adjusting. I'm especially proud of C1. Transitions can be difficult for a person on the autism spectrum and he has done really well with all of the changes. I hope he continues to thrive here, along with C2.

My husband likes his new job, although he says it's like catching a new movie halway through and trying to catch up with the story line. It's a notch up on the career ladder for him. He's the associate dean (sort of second in charge) of the academic library for the local campus in our new city.

As for me, I'm still a little overwhelmed and am dealing with some homesickness. However, I'm taking in the beauty of the Pacific Northwest and am enjoying living in what I consider my dream home. In time, this new place will feel like home to me.


On an endnote: here is something to remember when times get tough whether it's during a big change in life or a living through a meltdown with a loved on a spectrum:


"perfer et obdura; dolor hic tibi proderit olim"


It is Latin and means: Be patient and tough: someday this pain will be useful to you.


Yes, this change has been hard, but it's been a worthwhile journey. Everything that has happened to me thus far in my life has made me a stronger better person. That includes raising a child with special needs.

World Autism Day

Happy World Autism Day!!! If you have autism or have a family member with autism, please let us all know what part of the world you are from by leaving the name of your country in the comment section. Thank you! : )

Note: My family and I have just moved about 2000 miles from Michigan to a state on the West Coast of the United States (which is why I haven't blogged much lately. ) We're adapting and enjoying our new environment, but it's sort of like being in a whole new world because we've never lived anywhere outside of the Midwest before.

Taking a Break in Order to Move

Am in the process of moving with my family to another state. Am hoping to get back to blogging in late March. Wish us luck. As you know transitions are difficult for people on the autism spectrum. So far, my eleven-year-old son with autism is doing OK, though he talks to his stuffed animals about being scared about the move. Am hoping our transition to a new school will go well. I'm sure I'll have a lot to say about that in future posts once established. Take care everyone!

Stuffed Animals and the "Medium of Exchange"

If you look at my previous post you will see a photo of my two boys bonding over stuffed animals. Last Thursday (during a presentation on Peer to Peer support) I learned the technical term for what the stuffed animals represent at a START (STatewide Autism Resources and Training) session. I didn't know that the toys represented anything at the time, but I did know the stuffed animals were important to the bonding process between my sons (the older one who is on the spectrum and the younger boy who is not). Below is the exact definition of the term Medium of Exchange.

According to my START manual, a medium of exchange is "any material, task, prop, interest area, that connects a student with autism to a general education peer or staff person. Typically the medium of exchange is something that does not require language fro the connection or interaction to occur."

I see the medium of exchange as a bridge that fills the gap of social interaction between a person with ASD and someone who they know. The best medium of exchange is something that represents the person's special interest area. In my son's case, that would be frogs or other stuffed animals that my two boys play with (mostly cats, mice and wolves).

Here is a list of examples of Medium of Exchange that was in the START manual for Peer to Peer support:

General Education Curriculum
Encyclopedic interests
Computer Interest and Related Technology
Wii
Computer Games
Jigsaw puzzles
Uno, Topple, Trouble, Jenga, Simon (note, depending on level of social skills, one might want to stay from games like Taboo that require a lot of communication and social understanding)
Top 40 Music
T.V. Show Theme Songs (or in my son's case--catchy T.V. commercials)

Note: This term was presented in the context of being in an educational environment for primary and secondary level students, but I believe it could be adapted for adults or individuals in any setting. Most, if not all, people with autism have an interest that can be used to bridge the large social gap that might exist between them and other people (on the spectrum or not). The challenge is in using the bridge to effectively fill the gap. It might be difficult, but (as seen in my previous post) it is definitely possible and worthwhile.

Brotherly Love

Below: C2 and C1 (the one who has autism spectrum disorder--ASD) bond over stuff animals.

It makes my day when I see my two boys getting along so well, although they fight as much as you would expect brothers to do. C2, 7, often leads C1, 11, in play, usually using stuffed animals.

C2 loves cats. C1 loves "froggies." We have a lot of stuffed frogs... and a lot of cats too!!!

My oldest received the giant stuffed frog for Christmas from his paternal grandparents. My youngest received the two cats he is holding from his maternal aunt.

Beyond bonding over the stuffed animals, my oldest has been known to hug and kiss his little brother and tell him he loves him without being prompted. We have to work on the appropriate times to do this because C2 gets embarrassed if C1 does this in front of other people. However, I'm grateful my guy is capable of displaying unprompted affection. I get the occasional "I love you" from him as well.

It always seems like a miracle. I wonder if maybe that is because I have been telling him I love him every day since he was a baby. Who knows?

I'd understand, though, if my guy was unable to say those three words or hug or kiss, as I know is the case with many people on the spectrum. After all love should be unconditional. Although I cannot speak for them, it's very likely that the person with ASD loves their family members despite being unable to display it in an outward manner. We can't assume they are incaple of having emotions because they are unable to display them.

Today is Valentines Day, and I wish you all a very happy one. I hope there is as much love in your household as there is in mine. : )

HAPPY VALENTINES DAY!!!

Educational Strategies: Accommodations vs Modifications

Socialization and Independence. Those are the two main goals that are emphasized by the trainers for START, the grant funded, training series on educating youth with ASD that I'm attending.

During a training session I learned about two concepts that can be used to help students assimilate into a classroom--especially a general education one rather than a self contained special education room.

The two concepts are Accommodations and Modifications. It might seem that the two terms are interchangeable, but they are not. They are two distinct approaches to educating students with special needs.

According to the manual I received, accommodations "are the supports and services that help students validly demonstrate student learning." Modifications "are individualized changes made to the content and performance expectations for students."

So accommodating a students means doing something like giving a student a P-touch or a y-shaped pen to help with handwriting (as discussed in this post). It might be giving a student more time to complete a test or giving a student sound blocking headphones for times when classrooms get noisy or when fire drill/tornado drills are expected.

There are quite a few different ways to accommodate a student with ASD. Here is a short list of possible accomodations:

Adapting the way instruction is delivered (by pre-teaching and re-teaching, for example),

Increasing the level of support for the student with ASD (via class tutors, peer to peer support or by placing the student in groups of students who can appropriately interpret the curriculum expectations,

Giving preferential seating,

Addressing sensory system needs,

Organizing the desk/are where the student words,

Providing visual strategies such as visual schedules.

Modification basically means making the work more doable for the student with special needs with the intent that she or he does not become overwhelmed. For example, if a student can complete a multiple choice test, but has difficulty with too many choices, the number of choices can be reduced by blacking out two or three answers on the test for the child with ASD. Or with general classroom work, it might mean having the student complete selected sections of an assignment as opposed to having them complete all the work.

Note: I hope that I explained everything clearly enough, but if you are confused, it is likely you are not alone. We trainees spent a great deal of time learning about these two concepts during our two-day training session. This included completing some exercises so that we could better differentiate between accommodations and modifications. Feel free to ask a question via the comment section and I'll do my best to answer it by consulting my manual or by asking someone else.

Educational Strategies: Addressing Handwriting Problems

I'm not sure how many people know this but some individuals with Autism Spectrum Disorder (ASD) have difficulty with handwriting. Fine motor skills in general can be a problem. As you will see in this article, titled Kids with Autism Need Handwriting Help, Hans Asperger noticed that this was an issue with some of his patients back in the 1940s.

This is so true with my son. He's always had problems with handwriting and has had occupational therapy (through the school system) to address problems with both fine and gross motor skills for years now. I can only imagine the frustration he goes through as he has tried to do school work with pen and paper all day.

Only now, through the START program, have (and my team) figured out that his refusal to do school work might be associated with the difficulty he has with handwriting. The two pictures seen above show two possible ways to address handwriting difficulty (besides Occupational therapy--but speaking of that... here is a list of hand strengthening activities).

The first is the P-Touch, a label maker, and the second is a y-shaped pen (that my son hasn't tried yet) which supports the hand better. Both of these can be purchased at an office supply store such as Staples or Office Max for around $30 U.S. With the P-touch, one can type in answers in response to a question on a worksheet, hit print, peel off the back to uncover the adhesive and then apply the sticker to the sheet.

All the teams participating in START received a P-touch after turning in an Action Plan at the end of the two day Module on Educational Strategies. (An action plan is a document consisting of proactive strategies designed to help the student. We have to complete one for every module.)My son's teacher took the P-touch into school.

To be honest, the initial success with the device was modest. His teacher, the wonderful Mrs. S., reported that C1 loved the device and that did use it to complete some work. However, she also said he was still refusing to do work in small group settings and was using the P-touch to type in "no," as in he wasn't going to cooperate!

So the P-touch isn't going to be 100 percent of our solution, although it certainly does help, especially now that my son know understands what he should and should not do in terms of using the device. I'd highly recommend that any team who has a child with autism who struggles with handwriting or compliance to do work, to at least try this device or one similar to it.

Note: My son is doing better with compliance to do work. As of now, he is doing great in the special education room, but has suddenly decided he isn't going to work in his regular fourth grade classroom (which hasn't been a problem before). So compliance still remains to be a problem that must be addressed. This is an issue that cannot be solved over night, but with patience and the persist ant use of the correct educational struggles, I believe this issue can be overcome.

Review: I don't Want to Go to School

Yesterday was the last day of winter break. Our two boys had some gift certificates to spend at a local book store. When my husband and I saw I Don't Want to Go to School written and illustrated by Stephanie Blake, we had to get it.

I didn't read the book first and now regret buying it because it's really too young for us. The hero, Simon, seems to be a kindergartner who is afraid to go to school. The guy we were thinking of is eleven and in the fourth grade.

Also, unlike the hero, my guy has autism and his problems with school go way beyond anxiety. (He just doesn't like it, and we're still trying to figure out why.) Anyway, by the end of the story, Simon decides he likes school so much he doesn't want to leave. That is great, but it makes me wish that was the case with my child. He always wants to come home!!!

Don't get me wrong. The book is cute. My six year old liked it a lot when I read it to him, though it seemed a bit young even for him, let alone my eleven year old. I also noticed something a bit off about the book. It's a picky point, but Blake depicts Simon writing his name in cursive on one of the pages. This is something a second or third grader might do, but certainly not a kindergartner on his first day at school! Further, there are signs all over the kindergarten room on one page in the book. All the signs written in cursive. I've been in many a kindergarten room and usually all the signs are printed.

So, that is another thing my son does not have in common with Simon. He might not ever write in cursive. It's hard enough for him to print his name. C1's team at school and I think his problems with school might have to do with writing. My team and I learned about how to solve writing related problems at START. Hopefully, I'll blog about the topic of hand writing soon.

As far as this book goes, it seems most appropriate for young children who are just about to enter primary school (though I like Wemberly Worried, a similar book, by Kevin Henkes a bit better). Blake's pictures are bright and cheerful and the story depicts Simon having a lot of fun at school, but as a mom of older children I wish I had passed on this one for something more age appropriate.