Monday, December 20, 2010
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. :)
Monday, November 22, 2010
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.
Saturday, November 13, 2010
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.
Monday, October 11, 2010
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.
Monday, August 30, 2010
Monday, August 9, 2010
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! : )
Monday, July 26, 2010
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.
Sunday, July 18, 2010
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.
Wednesday, June 30, 2010
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. : )
Wednesday, June 2, 2010
Tuesday, May 11, 2010
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.
Wednesday, May 5, 2010
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.
Tuesday, April 27, 2010
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...
Saturday, April 17, 2010
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.
Friday, April 2, 2010
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.
Tuesday, March 16, 2010
Saturday, March 6, 2010
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
Computer Interest and Related Technology
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.
Sunday, February 14, 2010
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. : )
Thursday, January 28, 2010
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.
Friday, January 15, 2010
Monday, January 4, 2010
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.