Thursday, January 31, 2008
The TV: "What's in your wallet?"
My son: "I don't have a wallet!"
The Backstory: My son, his brother and their dad are at a local drugstore buying candy (of all things) after a trip to the video store. While checking out, my son notices the twenty-something cashier's name tag.
My son: "Oh your name is Ashley!*
The cashier: "Yes it is."
My son: "My phone number is 555-4321*
His dad: "She's too old for you."
Everyone else: laughter.
On the Future:
My son: When I grow older, I'll get bigger, go to high school and then to college.
*Changed the name and phone number.
Wednesday, January 30, 2008
It's not because my guy always exhibits perfect behavior. Believe me, he has had his moments. Further, the avoidance of angry stares and rude comments is not because I am the perfect mom who is always in total control of the situation. OK, once I lucked out and received kind, effective help from another autism mom who knew exactly what to do when a meltdown occurred in public three or four years ago. At that point of time I had no clue as to what to do because of a lack of experience. Back then, the main way of dealing was not taking the kid out. However, that is not a practical solution nor is it necessarily good to stash your kid away at all times.
Anyway, the reason I probably missed, stares, glares and comments (can't with certainty that we ever attracted such behavior) is because I have developed tunnel vision as a coping skill. I simply tune everyone else out and focus on my son when behaviors occur. I look and deal only with him (and his little brother. ) Maybe, when I do this I have the appearance of seeming in control. I don't know. What I do know is that narration also helps. Not so much for my son, but for the benefit of strangers. Here are some examples of some of my narrative statements:
"It's against the rules to run behind the cash register. That's a no, no!"
"It's the cashier's job to scan the items we are buying at the store."
"Yes, I know we have been to too many places and you are getting overwhelmed."
"Come on, let's go. You are acting really silly right now."
"Oh, no. Now I have to pay for those tic tacs because you opened them. But believe me you are not getting any more once I'm finished paying for these groceries!"
Back in the day when it was screaming and crying rather than inappropriate behavior it was:
"I know, I know you are not happy."
"We're going to have to leave right now because you are acting this way."
I'm not sure if tunnel vision accompanied with narration will work for other parents who have had to deal with a meltdown (tantrum) in public. However, it does seem to work for me. You cannot hear any evil when you are too busy making comments on top of what's coming out of your child's mouth. And you certainly cannot see any evil when you are focused entirely on your child (unless paying for groceries, etc.) Tunnel vision with effective narration may be worth a try...
Tuesday, January 29, 2008
The article did venture into vaccines (a topic for which I must summon bravery to write about again), but stayed pretty much in the safe zone. I, too, have been recently sticking to safe topics in regards to autism, although that may change in the future.
Anyway, the best feature of all was the magazine's invitation to readers to tell their stories at the magazine's online site. Yes, it was designed as a comment feature, but their comment section had a twist--a comment section for every comment.
The invitation allowed readers to fill in the gaps in terms of issues the reporter did not write about due to space issues. And fill in the gaps they did. As of 11 p.m. on January 28, they had received 138 stories (with a few repeat storytellers.)
Parents with adult children on the spectrum wrote in to complain about the emphasis the media places on children with ASD. People concerned about vaccines wrote in to defend their beliefs. Those who embrace neurodiversity and do not think of autism as a disease also voiced their opinions. Siblings with autistic brother(s) and/or sister(s) and professionals working with individuals on the spectrum wrote in too. Of course, certain therapies were mentioned as well with some of them seeming a little bit strange...
Did I tell my son's story at the site? No, this time I just "listened." Reading most of the stories gave me ideas for future posts. I, too, would like to fill the gaps on this blog in regards to autism.
Monday, January 28, 2008
Back then my guy with autism was only six or seven and I was just beginning to network in terms of finding opportunities in which he could participate. At the age of nine, he is now eligible to compete along with other athletes in Special Olympics-Michigan (SOMI). Before that he was eligible for a skills-building program that did not happen to be located in our city.
Now that a couple of years have passed my son has finally become an Olympian. I'm friends with a woman who has a son who did participate in the skills building program as a youngster with autism. Now she is working as a volunteer to get younger athletes to participate. We are amongst her first recruits.
Anyway, last night I wrote a post about his first experience with Special Olympics. He bowled yesterday with his dad, but I accidentally buried the post in the blog when I forgot to date the post for today. So now I have given my fingers and brain another workout by writing another post. I don't mind though, Special Olympics is a wonderful organization that is a great subject for this blog.
Sunday, January 27, 2008
My family of four attended. My husband dug a few froggy stamps out for my oldest to use on his tile. The kid ignored the stamps and painted what he called "a masterpiece" which was actually a solid mass of green. We gave him different shades, so at least there was variety. Our son gets the award for using the most paint. We had to watch him because he almost made a huge mess twice. That's unusual because it's usually his brother who is the mess maker.
I joked that while Picasso had his blue period, my guy is going through a green period. However unlike Picasso, in my son's case green signifies happiness as he loves painting and being with his friends from the camp. He had been excited about this trip all week.
My youngest delighted in using a stamp for his tile and also stuck to one color: pink. He also enjoyed the experience and sang and sang as he painted. He has this cute little voice that puts a smile on my face.
Inspired by my sons, I painted a 'mommy mug' featuring frogs, cats, green and pink. We'll see how it turns out. We won't get the pieces back for a couple of weeks because they need to be glazed and fired by the staff. My husband just hung out and teased all the kids about getting paint in their hair. His specialty at these trips is giving them all a hard time in his usual ornery, but harmless way.
Anyway, here is the report I filed to the director of the camp:
Five campers, five siblings and five parents met at Let's Do the Dishes in Mt. Pleasant Michigan on January 26. Campers, siblings and even a few parents painted either a tile, plate or mug. The field trip was affordable as the pieces were priced between five and seven dollars.
We all had a nice time chatting, painting and just being together. Everyone behaved nicely and no one got paint in their hair! : ) The coordinator noticed that animals, flowers and butterflies were the most popular motifs although one camper painted a cute smiley face on a plate and another camper decorated a plate with a dragon.
I forgot to tell my son that his bowling outing with his dad would be a practice session for Special Olympics, but it did not matter. My husband told me our son was excited to learn that the bowling was part of the program. Unified bowling is where the Special Olympians bowl with a family member or other volunteer. My Olympian had overheard me talking about Special Olympics awhile ago and decided right then and there he wanted to be a part of it.
My family has been bowling together before, but not without using the supports available for little kids. We've done bumper bowling and bowling with ramps. The Olympians, however, are discouraged from using those supports unless they physically need them.
Fortunately my young guy rose to the occasion and did not insist on using a ramp. He did his best, although he tended to get distracted between turns. His score was a 26. A perfect score in bowling is 300, but my guy's score wasn't bad considering I got a 10 when I first bowled as a ten year old. My husband scored a 76 which isn't bad either because he bowled his first game just a few months ago. Both of my guys will no doubt improve over the next few weeks during practice sessions. The big tournament is in April. Up until they'll be practicing during weekly 2-hour sessions.
In the Spring we'll probably try track. He'll do OK, because I need to wear running shoes (really) to keep up with him and his brother whenever we leave the house with me as guardian in charge. With any luck my little athlete will get to participate during the Special Olympics in the summer. Every June, as it has the last 35 years, Central Michigan University hosts Special Olympics for athletes from Michigan. The three or four day Olympics is great for our economy, but even greater for athletes like my son.
Saturday, January 26, 2008
I can't remember how the assignment was graded, but I do remember suspecting that most of the class did not rise to the occasion. I was tipped off to the unpopularity of this assignment when a fellow classmate asked me what I did, and then reported exactly what I said when called upon by the instructor--taking credit for my idea. (I don't remember exactly how I handled this, but I think I talked to the instructor to make sure I received credit for the assignment.)
What did I do for the assignment? I wore a pair of my mom's slippers on my way to my first class on a crowded shuttle bus. The slippers were black with tiny pink, orange, blue and yellow flowers. I realize the slippers seem kind of cute so far, but the style was pretty unflattering. They were classic old lady slippers.
What happened? I noticed that people glanced at my feet and then looked away. That was it. No snickers or rude comments. Well, I suppose this was back in the day where one big trend was wearing white socks with sandals. Even today, college students in my town dress a little quirky--pajama bottoms in the grocery store, shorts and flip flops outside in winter, etc.
However, the theme of this post isn't about the occasional weird fashion choice of college students. It's about doing something noticeable to raise awareness and donations for a cause. It's remarkable how doing something completely out of the ordinary can create an extraordinary response.
A story about a college basketball coach who coached barefoot for an entire game is what inspired me today. The goal of Ron Hunter, who coaches the team from Indiana University-Purdue (IUPUI), was to inspire the donation of 40,000 pairs of shoes. As the result of his action Hunter exceeded his goal and actually received 110,0000 pairs, more than $20,000, and and offer from a donor to fly his team to Africa this summer if NCAA rules allow.
Hunter's charity was Samaritan's Feet, a nonprofit, Christian-based charity that hopes outfit 10 million people world-wide with shoes over a 10-year period. A freshman guard on his team inspired Hunter. The guard, Christian Siakam, is from Cameroon where "shoes are a luxury."
It is worth noting that Hunter did suffer a bit as the result of coaching barefoot (standing up most of the time.) "My feet hurt so bad," he said after the game. "But imagine a child or a human going their whole lives without shoes."
Connecting this story to autism awareness: College coaches (especially for football and basketball) are usually hometown celebrities that can easily attract attention for actions such as that of Ron Hunter. Even principals of standard American schools are well known enough inspire people to rise to the occasion when the principals volunteer to do extraordinary things such as being duck taped to a wall if a certain amount of money is raised for charity.
But what about your standard American "soccer mom"? Is it possible that a person who normally blends in with the crowd could inspire people? Could she do something out of the ordinary to raise enough money for, say, buying the necessary insurance to get chapter recognition from Autism Society of America for her fledgling group? If so, what would that something have to be? Should it be something that underscores the idea that people with autism suffer as a result of having difficulty processing sensory information? Any ideas?
Poll Results: Sometimes I can accurately predict the outcomes of the polls I put up, but the results of the poll related to this story completely surprised me. The question: What is the best way to raise money for autism awareness? Five choices were listed. The results were as follows: 1. Quirky Awareness Stunts (42%); 2. Cultivating Wealthy Donors (28 %); 3. (tie) Writing for Grants/Donations and Sponsoring an Event (14%); and 4. Selling Items (0 %).
My thoughts: Well, Quirky Awareness Stunts can be quite effective in snaring the attention of the media which has a penchance for reporting on stories such as that of Coach Hunter. As for Selling Items, it does work for the Girl Scouts who have been selling their famous cookies for eons. Selling stuff is a good way for children to begin building fundraising skills. Hundreds of dollars and more can be raised with this method. All methods seem to work, but in terms of specific causes/organizations it is a matter of choosing the most efficient, cost effective, and appropriate method.
Will I do something quirky in the future? I cannot predict that one. The method has its appeal but I would have to figure out something that fits into my mom/wife life. If inspiration hits...
Friday, January 25, 2008
A brief synopsis: Kaede has two brothers on the spectrum, but her parents had difficulty getting a diagnosis for their daughter. During an interview, Kaede's mom Kristi said, "The early intervention people would not recognize the things that I was seeing even though they were identical behaviors as the boys."
Researcher Brenda Myles was interviewed for this segment. She was credited with being " one of the lead researchers specializing in the quite narrow field of girls with autism."
"It's more appropriate, if you will, for a boy to have a tantrum and major meltdown than a girl," Myles said. Kaede's mom agreed that society views girls differently than boys in terms of tantrums. "People roll their eyes and say 'drama queen,' even me," said Kristi Sakai.
As for Kaede, she is getting lessons from a special education teacher on how to make friends. Still, as the narrator points out "While her teacher takes her diagnosis seriously and understands the challenges she faces, not everyone in her regular elementary school does."
My thoughts: While most people probably paid more attention to the "struggle to fit in" part of the headline, I identified to the second part. As a female with a past of social difficulty, I do not quite fit the classic profile of autism but I do have some sensory issues and problems with receptive speech that I can mask most of the time. I am still unsure if I could be viewed as an individual with autism, but I certainly understand how girls can be overlooked in terms of a diagnosis.
It's a no-brainer that boys and girls are different. Why shouldn't the signs of autism be exhibited in girls and boys differently? I've felt for a long time that there was something wrong with the statistic that only one in four or five children with autism are girls. Hopefully, as the results of studies from researchers like Myles, someone will develop gender specific diagnostic criteria that could be used to diagnose young females.
Kudos to Brenda Myles for conducting research on girls with autism. I hope that her work will help a lot of girls and their parents receive the services they need.
P.S. The Nightline story inspired some heartening responses from women with autism. It may be worth your while to go to the online story and check out the comment section.
Thursday, January 24, 2008
Every now and then I ponder over autism, its prevalance, and awareness of the disorder in other parts of the world besides North America, Europe and Australia. I am also on a committee planning currently planning activities for autism awareness month in April at Central Michigan University, so I suppose that is why this particular news item caught my eye today.
We, too, are planning to end our activities with an awareness walk. I guess a march of sorts is a no-brainer of a grand finale. I am looking forward to the one we have planned. It never occurred to us to have a theme like "Hope Abounds," but I like the idea. Maybe next year...
Tuesday, January 22, 2008
ALOHA; LAMA; HA; LO; LOAM; HAM; AHA; LAM; OHM; MA; LOOM; LA; HA; AM; HO; OH; AH; and A.
Brandon seems to have a preference for NICHCY Connections: A Web resource page of the National Dissemination Center for Children with Disabilities. Thanks for the link, Brandon.
Results from the poll: Out of 15 people who voted, 11 (73%) liked Mahalo and 4 did not. Thanks to all who voted.
A sincere thank you goes to everyone who commented on the site Mahalo. Below are readers thoughts on the website. The third and last comment is from a part-time guide at Mahalo who has a six-year-old son on the spectrum:
Mark said: FindingDulcinea is another site that uses human judgment and insight to direct users to the best sources of information about a subject. You may find that it has better and more consistent editorial standards than Mahalo, and lays out all the sites related to autism in a single, straightforward, well narrated Web Guide, rather than requiring you to type in multiple search terms. The autism guide also has a "parent" Web guide with excellent advice on how to approach Web research.
Anonymous 1 said: Have you ever tried OrganizedWisdom.com? They are a search engine that focuses on JUST health topics.
Anonymous 2 said: Hi! I am a part time Guide at Mahalo. My 6 year old son is also autistic and I have to say that I was impressed with their autism page..but I wasn't "Wow'ed" by it. Since Mahalo uses Google for their results what I found that happens is they throw the top 20 links from Google up there and figure they're the best information for this topic. Anyone that has an autistic child knows that it goes much much deeper than that. Unless you have an autistic child you can't fathom everything that goes along with it, so their page is more than half incomplete, at best. If you're not on the health team you can't contribute to pages like this, which is unfortunate. Experience will win over the ability to read a link any day of the week. Mahalo to your son!
P.S. Just for fun, I will probably try an interactive post like this sometime in the future. However, I will try to be more clear about instructions (thanks for the tip after my first try Maddy!) and will try to design a contest that is less time consuming.
Monday, January 21, 2008
The Backyardigans are five little playmates who have "excellent adventures" in their own backyards. One episode features them as secret agents. In another, they are pirates seeking treasure. In the end of the treasure seeking story they decide to rebury the large diamond they find. Their costumes suddenly disappear and the five characters head to someone's house for the ever present end of the show snack.
The diversity of the characters is subtle, yet apparent. Each of the characters take on a different form. For example, Pablo is a bluebird and Uniqua is, well unique. I guess it isn't an accident that Uniqua was my son's favorite character for a long, long time. However, now he'll say it is the orange Tyrone, a moose, instead of the pink, feminine Uniqua. The two other characters are Tasha and Austin.
Anyway, I love the show for its emphasis on imaginative play. I think the imaginative aspect of the show is a good influence on my son. However, I suspect my young viewer likes the show for its vivid use of color and, in particular, for its great music. Usually the show runs about a half hour (commercials included). The shows are mini-musicals which feature the characters breaking into song now and then.
Occasionally The Backyardigans morphs into hour-long specials. Music stars like Cyndi Lauper and Alicia Keys have performed songs on these longer shows. Long or short the story-lines are always superb, which makes the show much more tolerable for adults to watch than some other older, better known programs for children. Even though the show is geared toward two to five year olds, The Backyardingans is also great for older children like my son who may be experiencing some developmental delays.
Sunday, January 20, 2008
But somehow the invitations were issued via the telephone, the house was cleaned, party supplies including a tiger pinata bought (we put a palm tree necklace on it to fit the theme), a cake was ordered and picked up, and seven or eight goodie bags were assembled. Also bought a few foods for a Hawaiian taste test--a fresh pineapple, coconut, canned pineapple and macadamia nuts. We had four guests (preschool classmates) on the party day and one little girl on the next for a make-up party/play date because her parents forgot about the party on Saturday.
Fortunately, my guy with autism does well enough with parties. He made a sign welcoming the guests and greeted them at the door. He also lined up to hit the pinata with the stick and hung in there for all three rounds before my husband jumped in to finish the pinata off. My son did say at one point that there were too many guests, but somehow managed not to get overstimulated. The cake and ice cream (soy for him) was his favorite part. "Happy Birthday to You" is his one of his favorite songs. Now he has taken to picking up his ukulele to accompany everyone. He was quirky, but charming and made some of the little guests giggle at times.
Anyway, the party seemed to be a success--if success can be measured by a high level of noise from energetic four and five year olds. My little guy was happy anyway and that is what counts. Me? I took a two and a half hour nap today after our play date guest went home.
Saturday, January 19, 2008
A paper, written by Leslie Feldman on EBD that is titled Fathers' Age and Autism serves as a main feature on the blog. The author cited the 2006 study by Reichenberg and noted that, "[Reichenberg] also found that the ratio of girls to boys in this cohort was 1:1, suggesting that this was a special subset of autism, maybe de novo rather than familial autism. "
Here is the last paragraph of Feldman's paper:
What might be the mechanism that produces higher rates of disorders among children of older fathers? The DNA in a 20 year-old male has been copied approximately100 times but in a 50 year-old father it has been copied over 800 times. Singh and colleagues (2003) studied differences in the sperm of older and younger men. Men over age 35 have sperm with lower motility and more highly damaged DNA in the form of double-strand breaks. The older group also had fewer apoptotic cells, an important discovery. (Apoptosis is form of cell death that protects the parent organism from problems or that permits differentiation, as in resorption of a tadpole’s tail.) A really key factor that differentiates sperm from other cells in the body is that they do not repair their DNA damage, as most other cells do. As a result, the only way to avoid passing DNA damage to a child is for the damaged cells to undergo apoptosis, a process that the study indicates declines with age. Singh is quoted in Science Blog (Sullivan, 2002) as explaining that, “In older men, the sperm are accumulating more damage, and those severely damaged sperm are not being eliminated.”
For more reading about various studies, I'd suggest this blog. Here is the authors' description of the EBD blog:
EBD Blog is about emotional and behavioral disorders of children and youths. In the US, this area of special education is often referred to as “emotional disturbance,” but we’re using the term EBD, as that one is more clearly descriptive and preferred by many leaders in the field. EBD Blog will also include content about related areas of disability, including autism, attention deficit disorder (ADD or ADHD), and other similar topics. John Wills Lloyd and James M. Kauffman are the primary authors of EBD Blog.
Friday, January 18, 2008
Here is the abstract:
Advancing Paternal Age and Autism
Context Maternal and paternal ages are associated with neurodevelopmental disorders.
Objective To examine the relationship between advancing paternal age at birth of offspring and their risk of autism spectrum disorder (ASD).
Design Historical population-based cohort study.
Setting Identification of ASD cases from the Israeli draft board medical registry.
Participants We conducted a study of Jewish persons born in Israel during 6 consecutive years. Virtually all men and about three quarters of women in this cohort underwent draft board assessment at age 17 years. Paternal age at birth was obtained for most of the cohort; maternal age was obtained for a smaller subset. We used the smaller subset (n = 132 271) with data on both paternal and maternal age for the primary analysis and the larger subset (n = 318 506) with data on paternal but not maternal age for sensitivity analyses.
Main Outcome Measures Information on persons coded as having International Classification of Diseases, 10th Revision ASD was obtained from the registry. The registry identified 110 cases of ASD (incidence, 8.3 cases per 10 000 persons), mainly autism, in the smaller subset with complete parental age data.
Results There was a significant monotonic association between advancing paternal age and risk of ASD. Offspring of men 40 years or older were 5.75 times (95% confidence interval, 2.65-12.46; P<.001) more likely to have ASD compared with offspring of men younger than 30 years, after controlling for year of birth, socioeconomic status, and maternal age. Advancing maternal age showed no association with ASD after adjusting for paternal age. Sensitivity analyses indicated that these findings were not the result of bias due to missing data on maternal age.
Conclusions Advanced paternal age was associated with increased risk of ASD. Possible biological mechanisms include de novo mutations associated with advancing age or alterations in genetic imprinting.
Thursday, January 17, 2008
Why? Because it has the phrase "there's more to do than can ever be done."
The song is also appropriate because I'm still in the midst of planning a fifth birthday party and the song I just mentioned accompanied the scene in the film where Simba was born and shown to the rest of the kingdom. The scene is striking it part because it symbolizes how significant the birth of a young one (lion, human or otherwise) is to parents and the world in general. The signifance of one's birth is why we celebrate birthdays. While older adults are sometimes happy to let one pass without acknowlegement, children love being honored.
However, making sure a child feels honored is hard work--especially when life is really busy. Does anyone else out there feel like they have trouble keeping up with life in general? That is making sure family needs are met, the home is cleaned, friends feel remembered, all necessary appointments made and kept (vet, dentist, doctor, ect.), and that all community service projects are completed.
I have a few old (almost ancient at this point) report cards from my elementary school days which indicate that my organizational skills needed much improvement. Since then I've improved in that area because it's much harder to keep up with life without any organizational skills.
Fortunately, I've picked up a few in that department, although I still have a ways to go. One skill that comes in handy is writing a to-do list. I only do this when I'm either feeling like I'm making slow progress on various projects or when I'm overwhelmed. Lately, I've been overwhelmed as I "recover" from the holidays.
It doesn't help that I have a few January birthdays to remember. I adore the January birthday people (son, dad, stepmom, niece), but it's hard to get cards out in time and plan a celebration for my youngest one two weeks after Christmas. (At least I made my dad's birthday phone calls on time, but my his card with an unaddressed, unstamped envelope is still sitting on the kitchen counter.)
Yesterday, I lost some time because I became a volunteer sub for one of my son's preschool teachers. It was just a 1 p.m. to 3:30 p.m. shift. It was an easy and enjoyable job. I just love little kids. All you have to do is pay lots of attention to them, be firm but gentle when necessary, and make sure safety rules are followed. Being in the classroom also gave me the chance to see how my birthday boy was honored at school and to help him pass out the strawberry-flavored cupcakes we made the night before. I would have missed a couple of things otherwise.
We had a small family celebration yesterday evening. The highlights were going to a local restaurant for dinner and coming home for dessert. We put a candle in one of the three cupcakes served (my husband doesn't have a sweet tooth) and had soy ice cream. We sang the birthday song and my oldest son delighted us by strumming along on his new ukulele. He might have autism, but he does love birthdays and singing.
Since, I missed my usual two and half hours to run errands and clean house yesterday, I find that a writing a to-do list is a must do. Now that I went through a early morning routine and dropped off my oldest at school, I must write one up for today. Here is what I'll do after publishing this post and checking email:
1. Shower, attempt to have a decent hair day and have breakfast.
2. Wash up breakfast dishes, make my bed, do laundry and clean up house as much as possible.
3. Leave for my follow-up doctor's appointment at 11:20
4. Prepare lunch for five year old and self
5. Finish putting Christmas stuff away, sort toys, clean some more.
6. Pick up oldest son from school around 3:30
7. Make sure the guys have a decent dinner
8. Prepare for and go to April autism awareness event planning meeting at 5:30 on CMU's campus.
9. Come home, relax, and make sure medicines are given and two books are read to the boys before 9 p.m.
10. Think about games for Saturday's birthday party for five year old. He's having four or five little friends over to celebrate. This is the first time celebrated with his friends. He made the request and I couldn't help but grant it.
With any luck, I'll complete most or all of the list. I really hope that no emergencies come up.
Wednesday, January 16, 2008
We will be taking in frosted home-baked, strawberry-flavored cupcakes (from a box mix) in to my son's preschool class. For the week, as a birthday honoree, he has a picture collage in the school's "Me Museum." The main celebration for my son will be on Saturday.
P.S. I was a surprise baby who was born when both parents were 43 years old. I also have a step-niece who turns seven today.
Tuesday, January 15, 2008
Top Photo: My oldest son gets pulled up to the tree house via a pulley system. He refused to try their new ladder, because he wanted 'to fly.' He might of had trouble with the ladder, because it is harder to climb than it looks as I discovered. One needs to have strong arm muscles to help pull themselves up.
Bottom Photo: My son was being pulled up to this tree house. It also has a lift with a special chair for campers who use wheelchairs. It's a one of a kind model made possible, in part, by students from the University of Michigan.
Note: These photos were taken while we attended their open house in late July, 2007. Activities such as pontoon boat rides, tours via a tractor-pulled wagon, and horse riding demos were also available. Although it is quite a drive to the Fowler Center from where we live, we went because our son's week long camp session (his third year) for individuals age six to twenty started the next day. Also, the annual open house was extra special that day because this camp for children and adults with special needs was celebrating fifty years of operation.
Anyway, I put these photos up as a reminder to myself. I usually have pre-registered by the end of October, but for various reasons I put registration off this year. I'll have to get my act together. My nine year old with autism really likes this place--and they like him.
Monday, January 14, 2008
Writing about surf therapy made me wonder what qualifies as therapy. Does it have to be administered by a licensed therapist or could it be any activity that encourages participation in day-to-day events? Or can it be an activity that just makes one feel better? Do you have to pay for it?
If so, then snow therapy doesn't count because it's absolutely free. Snow is the main requirement. Packy snow is best. The snow packs best when the temp is just above freezing. Otherwise free activities (skiing equipments can be costly) are limited to making snow angels and sledding (what kid in typically snowy areas doesn't have one?)
Anyway, if playing in the snow counts, then we have been participating in snow therapy for years. When my guy with autism was younger he didn't participate much in outdoor winter play but did like being pulled around on our sled. His next step was to start making snow angels. Finally, after years of making snowmen art projects at school and also years of watching me make a snowman, my son finally started to help me build one. He also started to participate a little in snowball fights.
When my son was younger, he'd watch me roll and assemble the snowballs. However, he did like to help with putting in the stick arms, eyes and mouth made with whatever I could find, and a carrot nose. Last year, at age 8, he finally started help me roll the snow balls. He still only does one out of the three necessary to build the snowman, but it's a big step from what he has done in the past.
Last evening, the four of us went out to play. First we had a snowball fight. Everyone took turns being the target. Dad gets the award for moving out of the way the fastest. Then, we made a snowman. We recycled the bottom part of a previous snowman the little guy had knocked down.
Both boys each rolled a ball. My younger guy wanted his ball to be the head. He made a bigger ball than I expected him to, so our snowman ended up top heavy to say the least. Dad went in for the carrot nose, almond nose, and helped us find the arms for the snowman. The oldest decorated its face and was satisfied when I drew a line with my finger to serve as the mouth. After some arguing between the two boys, we named the snowman "Snowy."
My favorite part of our family playtime was when I decided to lie down in the purple toboggan and the two boys spontaneously piled on top of me. To my surprise, my husband, picked up the yellow rope and pulled the three of us around the house. I was surprised at how soothing being pulled while lying flat on my back was--the shushing sound of the snow, the dark sky, woodsy landscape (we have two small clusters of trees in our yard), and the warmth of my two little boys. All of that gave me such a wonderful feeling. Afterward, the three of us with a sweet tooth ended our playtime with our typical cup of hot chocolate. Our time outdoors (which was not planned) ended up being a bright spot of an otherwise gloomy day. For me anyway, it seemed like Snow Therapy.
Sunday, January 13, 2008
Limited surfing opportunities (not surfing therapy) are available on our Great Lakes, but alas even the closest Great Lake, Lake Huron, will take more than an hour to reach from Mt. Pleasant. However, if one lives in California or near a beach where such therapy is offered, a child with autism has a great chance for an opportunity to experience surfing therapy. It's one of the most innovative and interesting therapies I have seen. Fortunately, more and more therapies and opportunities for children with autism are becoming available as awareness increases.
Anyway, there is a free camp (a day camp) in California profiled by the founders on their site Surfers Healing. They have some video footage and a ton of photographs on their site. It sounds like fun. My nine-year-old guy with autism would feel anxious at first but I think he would learn to love it because he enjoys being in the water. I did ask him yesterday what he think surfers are.
"Surfers are people in the water who discover," he responded.
'Okay..." I thought. 'Better ask another question."
"What do surf boarders ride on?" I said.
"Surfboards!," both boys responded in unison.
"Do they sit or stand?"
"They stand!" the duo replied.
"They ride out on their tummies first, then they yell 'Wipe Out'!" my five year old added. Yep, they both understand what surfing is all about. Hurray for books and television.
Saturday, January 12, 2008
1. Twenty points for finding a autism-related site on Mahalo that you never came across before and writing about it on your blog. Just let me know so I can give you credit!
2. Five extra points for crediting me for inspiring the post (no link necessary.)
3. Five Points for participating in my poll. Just tell me that you voted. Honor system invoked here.
4. Ten points for a detailed comment about Mahalo. (See Mark's post in comment section for a good example.)
5. Twenty points for the person coming up with the most words by rescrambling the letters from Mahalo. Hawaiian and English words of any length will be accepted. Freebie example: ham (don't forget to include it on your list). To be fair, each list will be kept secret until contest ends. Submit your list to me by commenting.
It is not mandatory to have a blog or participate in all five ways listed. The amount of participation depends on how competitive you are. Also you can earn points by commenting throughout the week. You do not have to report or try for points all at once. I'll keep tabs. So far, it looks like that will be easy enough to do. This is a friendly and fun type of contest.
Thank you (Mahalo) for Participating!
(Updated on 12 January 2008 to make contest less convoluted!)
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3. Say goodbye to spam, mediocre content, and deceptive sites.
4. We focus on the areas where traditional search engines struggle.
5. You can recommend high-quality links to any search term on Mahalo, either by using Mahalo Follow.
6. Mahalo's goal is to hand-write and maintain the top 50,000 search terms
Friday, January 11, 2008
My husband (who came home exhausted, but glad to be back) did a really good job with bringing back gifts from the conference in Hawaii. The ukulele was a hit with our older one as you can see. The little one received a pouch of little stuffed marine animals, a shell necklace that dad received as a freebie, and a set of three little inter-stacking treasure chests. We each received a t-shirt and a box of chocolates and pineapple-shaped cookies to share. Gifts aside, we are all glad to have him home again.
Thursday, January 10, 2008
Finally, my husband is on his way back from Hawaii. He has been gone since last Friday evening. He just called. At the moment I'm writing this he is in Detroit. His next step in travel is to fly to the airport in Sagninaw, Michigan and then drive home. So hurray! Everything and everyone I've come to depend on a bit is back or almost back in place.
The best part of this week's hurdles is that I now know I can jump over just about anything put before me. Am feeling a little stronger and more independent than ever. I even found out how handy cell phones can be if they are charged up and put in one's purse. Of course, I now have to readjust to the hubby being home, but I think I can handle that.
P.S. OK, so not everything I depend on disappeared this week. We stayed healthy (knock on wood) and I still had my two sweet boys by my side in our somewhat messy, but cozy home. Best of all, my babysitter (a college student) returned from winter break and was able to provide some much-needed respite this week. Further, four friends provided help in the form of transportation when I needed it, although I did find that assistance is generally easier to give than to receive.
Wednesday, January 9, 2008
Anyway, my guy loved the book--especially the pictures. He even looked at the book for quite some time after we were done reading it together. I don't know if he made the connection between the book about Asperger's syndrome and his own condition. When we came across a passage about a child with autism saying embarrassing things I said with a smile: "I wonder who does that? Who once said why does that old lady talk like a man?"
I thought I saw a glint of understanding in his eye, but he just smiled and pointed to the picture of the cat. If only I could have read his mind at that point. Well, at least liking the book is a start. We'll keep bringing the topic up in a slow and gentle way until he understands what we are trying to tell him.
I enjoyed reading the book to him. Sitting on the futon together and seeing his happy reaction to it was one of the true good moments of a not so great day.
Tuesday, January 8, 2008
And the whole thing turns out wrong
You might not make it back and you know
That you could be well oh that strong
And I'm not wrong
So you had a bad day...
Yesterday I kept humming the tune to Daniel Powter's song "So you Had a Bad Day" all day long and for good reason. I checked out the lyrics this morning and found that the above verse of the song summed it all up for me.
What happens when some of the technology that you depend on goes on the blink? Your whole day goes all wrong. At least I did make it back, so to speak, to what I hope is a better day.
Hopefully, I'll stay strong for the rest of the week as I try to complete a massive to do list that was put on hold by awful weather and bad luck. My power is back on after a severe thunderstorm with hail, thunder, and lightening knocked it out at 9:14 p.m., a minute before the tornado warning in the area was supposed to end. The power came back on at 7 a.m. this morning.
My nine year old with autism has a two hour delay today due to the power outages. He doesn't do well with delays so his teacher is probably in for a time with him. A delay throws the whole schedule of the school day off and that bothers him. My morning will be thrown off a bit too, because after I get him to school I have some clean up to do in the basement. We don't have a back-up sump pump (we'll get one soon) and the basement was really wet this morning after the ten hour outage.
Anyway, my son (not I) lucked out yesterday because he didn't have to deal with a delay. The fog that permeated the air on Sunday, was thicker on Monday as the air heated up to near record temperatures for this time of year. I think it was supposed to be around fifty four degrees yesterday. It was jacket weather. The fog hung around so long yesterday that school went from being delayed to being cancelled. It was a bummer for me because I was hoping things would go back to normal after a very stressful holiday season.
My little guy, however, did get to go to his afternoon preschool. Usually, when the public school system cancels school, his preschool teacher who runs her school in a local church cancels the preschool as well. Yesterday she decided not to cancel, because by the time his day was supposed to start at 1 p.m. the fog had lifted. I was glad for that because my two boys were starting to fight quite a bit so the two and a half hour separation seemed like a nice reprieve.
The power outage and school cancellation were not the only stress factors of the day. After picking up my little guy at 3:30, we ran some errands. I rewarded their good behavior in the grocery store by stopping off at Family Video to pick up some kid videos for them and The Waitress for me. Bad luck hit when I tried to start our minivan back up to drive us back home. The engine wouldn't turn over. I think it might have been the starter.
The one device that came through for me during that day was my mobile phone which is ironic because I am an old fashioned girl who prefers the reliability of land lines. (We get a lot of dropped calls in my area.) It was just a bit of luck that I had the darned thing in my purse and that it was actually all charged up. Also had a telephone book in my van (as a result of advice a friend had given me years ago), so I looked up the garage I usually go to and called for a tow truck. The boys were delighted as most little boys are when they see a vehicle being hitched up by a machine to the truck. I think they also liked the ride in the truck to the garage (to drop off the van) and to home. Cell phones, are good for emergencies I guess.
The mobile phone also came in handy when the power was knocked out. I wasn't prepared at all for that to happen. Wishful thinking I guess. It was dark and we couldn't see a thing. I went to the basement and felt for our flashlight on a ledge. Found it, but the batteries were dead. Darn. The next step was to find matches for the candles I keep in my foyer closet. That's not an easy task because I usually have to dig in the cupboards for them. (Note to self: put some matches in the box of candles. Feeling around it the dark for a pack didn't work. Looking for purse and retrieving the light providing mobile phone did. The matches were found in two minutes using the light from my phone which came in handy not once but twice in a single day where everything else I depended on in a technical sense failed.
Hope my day goes better today...
Monday, January 7, 2008
Right now he's insisting on going to a restaurant for dinner. I've been ignoring him and it's working a little bit, but he'll probably start back up again. Yep, it did. He just brought me a sign that said "let's go". If he makes a sign, then he expects his wish to come true. He should have a fairy godmother, because I'm not giving in on this one.
We did get out today. Our neighbors that live across the street hosted a small party for neighbors and some acquaintances. They were profiled on the front page of Mt. Pleasant's paper yesterday. Every year after Christmas they have two parties. One is a twelfth night party (which the article was about) for close friends. The other is kind of like a thirteenth day party for those of us who have children.
We missed the party last year because of illness, but I showed up with the boys this year. They look forward and expect to go to a train party every year. My husband couldn't make it, but I knew that I had to take them because they look forward to seeing the trains. The neighbor, a retired CMU professor, has a nice set up that runs up against two sides of his garage. He's has two that runs on a couple of loops and several scenes with miniatures. Look closely and one will see a sleigh on a rooftop, a man climbing out of a manhole, and little mountain goats on a mountain. He has put a lot of detail and countless hours of work into his display. He always has a contest to see who can spot all ten of his new additions first. I never win, though, because I'm always too busy making sure the boys are behaving and that they can see the trains.
There are usually four or five stands or ladders for children to get up on so that they can see as the display is raised up about three feet. I had to climb up too to see some of the newly added stuff. Two other neighbors, at around six foot tall, did not have problems seeing everything, but at 5'2", I needed a little help.
The boys behaved well enough. They both listened to the rules about not touching stuff and the little one behaved well as I kept a closer eye on his brother. My older son shot off cannons (clapping his hands together in his loudest boom) and jumped off all the platforms. I did my best with the jumping part because of safety concerns. That was the worst of it. No meltdowns. Just quirky and somewhat unsafe behavior. This was good enough for me. I had been concerned that his behavior could be worse because not only did the party start up at 3 p.m. (the time my son usually starts acting up) but because he snuck quite a bit of sugary stuff before we left. Alas, I forgot about the mug holding candy canes on the window sill.
Sunday, January 6, 2008
An article in Wikipedia sums the essay up best by zeroing in on the metaphor that the Kingsley is conveying. According to the entry, "The metaphor is that the trip to Italy is a typical birth and child-raising experience, and that the trip to Holland is the experiencing of having and raising a special-needs child."
I first received "Welcome to Holland" three years ago. I know the essay is still making the rounds in certain college courses because when I participated on a panel last year with four or five other autism parents, the professor of the developmental psychology class read the essay before he introduced us. At least two of the parents who hadn't seen the essay lost a tear or two. For some reason, I didn't cry either of the two times, but I understand why someone else would. It's a heart-touching essay, written with love and care.
I love the essay, but not everyone does. I found a critical essay called "Have a Nice Trip" in Brain, Child: the [online] magazine for thinking moms. It was written by Jill Cornfield, a mother of a child who was born premature and who has Pervasive Developmental Disorder. She received the article (given to all parents of preemies in the hospital where her son was) when her son spent months in the Neonatal Intensive Care Unit.
Cornfield prefers the metaphor of a cat to the metaphor of a visit to Holland. I don't think there is anything wrong with her preference of metaphor. She's not the only one who likens a child with autism to a cat. Kathy Hoopmann's cute children's book all cats have asperger syndrome (the words in the title of the book are not capitalized) comes to mind. It's the bitterness that seems to be emanating from "Have a Nice Trip" that concerns me. Cornfield closes her article by writing:
"Perhaps my biggest problem with Kingsley's metaphor is that it simply doesn't hold water. A traveler can always catch the next flight out, but no matter which parental country you find yourself in--whether typically developing or autistic or wheelchair-bound--you can't fly out again. "
Well, no we can't fly out of Holland (i.e. escape this journey with a special needs child). But do we want to? Should we want to? Why shouldn't we look around and see the beauty of Holland? To tell the truth, I personally have grown more emotionally and intellectually in Holland than I would have in Italy. Why stay as angry and bitter as this author seems to be? What Cornfield doesn't seem to understand is that this essay is more about acceptance and appreciating what you have than metaphor.
Acceptance does not mean that we should not do what we can to move our children with autism forward. We should expect and celebrate improvement. However, In my opinion, it is necessary to appreciate both the challenges and blessings that raising a child with autism brings.
There aren't many parents who expected their child to have autism (or land in Holland). For many, myself included, landing in Holland instead of Italy came as a complete shock. I, like others, had to face grief and learn to let go of the expectations of raising a child that doesn't have special needs. Unlike, others, I had to face this overwhelming emotion for a second round when I found out about my son's severe kidney ailments about a month after he turned eight years old (a year and a half ago).
It's common for parents of special needs children to go through cycles of grief. Denial and anger come before acceptance does. Sometimes it takes years to go through the cycle. Cornfield's essay was published two to three years ago, so perhaps she's no longer quite as angry or bitter as she seems to be in the essay.
Do not get me wrong, it's OK if one does not like "Welcome to Holland." It's a matter of personal preference. What's not OK is to stay angry. It's just not good for one's mental health.
I can only hope Cornfield is appreciating her "cat" and all he has to offer. My own son exasperates me at times--especially when he makes fellow moviegoers move to other seats with his brief period of feet stomping and seat kicking (as he did for the first time today.) However, I have to say that it's not so bad being in this place with my own cute, cat-like lad (the kid who actually meows when overstimulated). Because of my son's kidney conditions (renal reflux, single scarred kidney) I've had to face a reality that I may actually have to leave Holland some day. I don't want to go. It's a place I've learned to love. Holland, here I am.
P.S. It is comforting to know that I'm not alone in Holland. There are a lot of people with me in this country that are pretty great. Smiles--JML.
Saturday, January 5, 2008
Anyway her teaching tips have been featured by many a blogger, but I thought I'd post about it as well. I found a better link than the one that pops up on Google. This one, on the Autism Society of Michigan's site, doesn't have a bunch of junk to scroll past. I hope those readers who haven't come across these tips until now find them helpful.
All the tips are good, but I especially liked #8 and how to deal with irritating sounds because this is one area in which my son struggles. He puts his hands on his ears and sings before the school bell rings and I always wonder what the kids who are not on the spectrum think when he does this. He's not been bullied yet (am knocking on wood at this point), but I am seriously thinking about showing Temple's Tip about sound to his principal .However, I'm not sure how the tip will be taken.
An Extra Comment: Every time I hear Temple Grandin's name, I kick myself a little because she has spoken about autism twice now in Lansing and I missed both lectures. Next time, if there is one, I will be there. She is well regarded and her name comes up quite a bit in conjunction with autism. People seem to value what individuals on the spectrum have to say about autism. I suppose there is nothing quite like experiencing autism in terms of really knowing about and explaining the disorder. Everyone else just has to attend lectures and read and read and read...
Friday, January 4, 2008
The number one, for example, is always red, while twos are always yellow. The colors make the numbers easier to see. I prefer this game because I have a slight perception problem and the colors allow me to easily align the numbers.
The boys like the game because there is a four by four option that is much easier than the standard nine by nine puzzle that I usually complete. They each like to complete three puzzles in one sitting. They choose a different symbol option each time. One can opt for numbers, letters or pictures.
There is also a six by six version with the opportunity to choose between easy and medium. The four by four puzzle has only one level option (easy) and the nine by nine has the three level options of easy, medium and hard. One can also try for a record personal time or see how one's time stands up to the times of other puzzlers. The game is perfect for kids of all ages.
Additional note: I thought I'd stick with yesterday's math theme for today's post. While addition and subtraction seems to be hard for my son, sequencing and patterns are not. That could be why this game is a hit with him instead of a miss.
Thursday, January 3, 2008
Part of the problem was my youngest son. Like so many other little brothers he's always there by our sides whenever I'm trying to help the nine year old work on something. They are four and a half years apart so developmentally it's a challenge. I needed to figure out how to keep the four year old happy while motivating the older child.
Another part of the problem was older guy's need for manipulatives. For some reason the skill of counting one's fingers to solve easy math eludes him. Back in the summer, my solution to both aspects of my problem in getting math homework completed was to make two cardboard strip with numbers. Then we'd use that as a reference point for math. Well, both the nine year and the four year old enthusiastically made the strips. However, they were a big fat failure in terms of getting the math sheets done. Maybe the idea was too sophisticated. Who knows? Anyway, after that failure, I just gave up. After all it was summer and there were a lot of distractions.
We received another packet from his new teacher to do over Christmas. It was full of handouts and completion was optional. The little guy got a hold of the packet, colored some of the papers and scattered them around the house. I did manage to salvage the math sheet. The sheet had about 10 little birds on it. Each bird had an addition or subtraction problem. Each problem had an answer of four, six or eight. After the respective problem was completed, the birds were to be colored yellow, orange or red in accordance to the answer key.
We were pretty busy for most of winter break, but I was determined to get my guy to do his math sheet. It came down to the last night, the night before school started back up. In an unrelated act, my husband bought the boys a Staples Easy Button days earlier. They went to Staples for something else and the boys convinced him to buy one. At $4.98, it wasn't an overwhelming expense.
Anyway, The Easy Button is red with white letters spelling out the word easy. A man's voice says "That was Easy" when the button is pressed. The boys love it and as you can imagine we have to put it up most of the time because they would drive us nuts. The older one, especially, would be prone to pressing it over and over.
Yesterday I started thinking about how we'd get that math sheet done. The first thing I did was make a copy of the sheet so the little guy could have one to "work" on too. In terms of manipulatives, I decided that I'd use the two containers of red and green mini M&M's my guys received from Grandpa and Grandma. They both could help me count them out.
A lot of space was needed so we turned off the TV and settled down on the middle of the living room floor. This way both boys could be as close to me as possible without worrying about clunky chairs. We started by counting out the number of candies in accordance to what the first number of the problem. We took them out of a bowl and counted them out onto a plate. Then we took away or added candies as directed by the second number. My oldest son's job was to count the remaining M&M's and then write them on the sheet. I wrote the number on his brother's copy.
After the number was written down, they both were allowed to hit the easy button. After all the problems were solved and colored correctly (the four year old could do this part on his own), I divided up the candies for the boys to eat and let them hit the button one last time. It took forever to finish (my eldest is particular about his coloring), but the math sheet was completed and put in the backpack for his teacher to see.
Mrs. C had type written a note that said she would give a prize to those who completed the work. I did not tell my guy about the prize which is good because we only had one sheet to send back. Nonetheless, I am proud of getting my son to complete just that one assignment. After all, it only took me six or more months to work out all the underlying problems involved in getting math homework done. That was not so easy.
Wednesday, January 2, 2008
However, we still have plenty of snow. This is actually a good thing, because my boys love to play in it. I appreciate that option because I'm home alone all day with both of them. We all have snow boots, snow pants and other necessary winter gear. Santa brought a larger sled than the one we already have and that will come in handy. There is also plenty of powdered chocolate in the cupboard for a cup of cocoa after outdoor play so we are all set.
Dad went back to work today. My oldest (the nine year old with autism) doesn't go back to school until tomorrow. I love spending time with both boys, but the older one tends to be a bit more of a handful when dad is not home. He knows he can get away more with mom. I've learned to be more firm, but not in time to prevent my son from learning how to manipulate his mother to a certain extent. Ugh.
My biggest coping mechanism for days like this is to plan plenty of activities. Besides playing in the snow we will probably also take down our Christmas tree. At some point we will break open all the art supplies we received as presents. We have Play Dough, Crayola Paints, and some clay-like materials. My husband and I (with boys in tow)also planned to meet at the local Subway for lunch.
This was strategic planning because we know the son with autism likes to get out of the house and doesn't always count outdoor play as a satisfying outing. Yesterday, playing outside was enough, but I have a feeling that today he'll be more demanding.
It's about nine a.m. at the time I'm writing this post. My little one is up, but the big one is still in bed. I think I'll let him sleep for awhile. I still have to shower and get dressed for the big day ahead. Hopefully the hours until dad gets home will go by quickly and peacefully (no dramatic outbursts).