Friday, November 30, 2007

Dancing Boys


Taking a bit of a break from writing today. I hope you enjoy my boys dancing in my messy living room. Thanks to our babysitter for filming this while my husband and I were at a college football game freezing our butts off!

Wednesday, November 28, 2007

Girl with Asperger's Syndrome Eliminated from America's Next Top Model

Tyra Banks is a Super Model turned television executive who seems to be trying to change a few of the more negative aspects of the modeling world--the world where she gained her fame. Ms. Banks was the first woman with dark skin to be featured on the cover of the famous (or infamous) Swimsuit Edition of Sports Illustrated Magazine.

The biggest change Ms. Banks seems to be trying for is diversification. The vehicle in which she does this is her show, America's Next Top Model (ANTM.) My guilty and now former secret is that I have watched ANTM for eight of the nine seasons or cycles as the CW Network calls them. It's a way to experience a world I'd not otherwise get to experience. It's fun to watch the photo shoots, see the results and then learn who goes home next. One even learns a little bit about what it takes to be a successful professional. These lessons can translate to other professions.

Anyway, I've seen girls from many ethnic backgrounds and at least two lesbians on the show. The eight former winners have included one African American, three women of mixed descent, one Latina and one blond and two brunette Caucasians. The message is clear: beauty comes in many forms.

This season has been more exciting than normal because of one particular casting choice--the casting of a gorgeous, twenty-one year old Midwestern college student with Asperger's Syndrome. Her name is Heather Kuzmich.

Ms. Banks cast the tall, thin brunette with the light brown eyes along with twelve other girls. The reaction from viewers was wonderful. They all identified with Heather and chose her as Cover Girl of the Week every single week except for the first. I don't ever remember a model winning that honor so many weeks in a row. I've have been suspecting for awhile that Heather might be the most popular model ever to appear on this show. Amazing huh?

Heather, by all accounts, earned most of that adoration. Her photos were glorious. To look at them you would not know she had a disability. Most of the time she was mesmerising in her photos. At judging, Tyra would exclaim "No one else looks like her!" The four judges would comment on Heather's beauty and her bravery at appearing on the show. It was clear that she was a favorite amongst the judges. An artist, the girl seemed to have a knack at visualizing how she would look on film. At least for the first few weeks. Then one mistake started to turn into many.

Like most people with Asperger's Sydrome, Heather had some challenges. One of them was living with competitive and occasionally snarky girls. Some of the girls were understanding. Others thought she was babied by producers, etc. One in particular, seemed to make an effort to get a reaction out of her. One time the model, Saleisha, upset Heather when she jumped in the shower first after Heather called it. In another episode, the two girls argued about a bed.

The latter scene occurred when the six finalists relocated to Shanghai, China. In their penthouse suite, they found five beds and five girls quickly claimed them. Heather was the sixth girl. (Clever drama-producing trick on the producers part, huh?) Heather argued with Saleisha, who was refusing to share the bed she had claimed. It was the biggest one.

Dismayed, Heather teared up and left the room. At that point one of the girls said "Heather is so funny!" It was a comment not meant to be complimentary. Heather heard the comment and shot back "I wish I could get the joke!"

Other mishaps that Heather experienced because of her disability included nearly passing out at a late night video shoot after not eating all day, choking up on a runway when she was supposed to speak, messing up at a commercial where she was given each of the lines and then getting lost in Shanghai on Go-sees. Go-sees on ANTM mean mini-interviews between the five finalists and a set of four designers that are located in different places. On Go-Sees models must show off their runway walk and chat with designers while trying to show some personality. There are usually four Go-Sees and there is always a time limit.

The girls were turned loose to navigate the city by themselves. For this Cycle only, a translator was provided for each model. Heather only made it to one Go-See because she repeatedly got lost in Shanghai. That Go-See did not go well. She had an awkward walk, failed to make eye contact and did not impress the designer with her social skills. That does sound like Asperger's Syndrome doesn't it? Unfortunately, the other girls made it to their Go-Sees, although two others were late getting back to the return point.

Further, all of the girls had decent photographs. The only big mistake made by another model was that one of girls, Jenah, showed too much attitude toward this week's featured photographer, Nigel. Nigel is also a judge on the show. He was not impressed and the attitude became an issue at panel.

The judges ended up deliberating between Jenah and Heather--the two girls who had consistently been the best two performers on photo shoots. Heather's recent mistakes as a whole were too difficult to overlook and to my disappointment as well as other ANTM fans, Heather was sent packing. Cycle 9 will not be the same without her.

The last few cycles have had a theme. For Cycle 9, the theme was futuristic. My hope is that we will see more of or hear more from Heather in the future. She represented Aspies well, although she needs a lot of practice in terms of public speaking. One should remember, however, that coming in fifth on a popular reality show is not an easy feat--whether one has Asperger's Syndrome or not.

P.S. For more comments about Heather on this blog, please see my most recent post.

Just for Fun: Asperger's Syndrome Test

My friends (parents and advocates in the local autism community) often talk about or joke about the possibility of us all having Asperger's Syndrome. While I don't think that there is a single person on this planet that doesn't have a quirk, there is a good reason why parents of children with Autism Spectrum Disorder (ASD) might suspect they have Asperger's Syndrome or high functioning autism.

While some people argue that ASD is caused by environmental triggers, ASD can also be a genetic disorder. Because of the genetic aspect of ASD, I suspect it is not uncommon for parents start to wonder about themselves after their child has been diagnosed.

Because I'm the mother of a nine-year-old boy with autism, I've wondered about myself. I really don't know for sure one way or the other. Opinions from other people about yours truly tend to vary. I'm content to say I'm just a bit quirky. However, I admit when I saw this AQ (A, as in Asperger's) test on a blog called The Pie Palace, I jumped at the chance to take it.

The disclaimer on the sight emphasized that the test is just for fun and that is the main reason I took it. My results: I scored a 24. That was the score needed to get the title "Math Contest Winner." Math was one of my weakest areas in school, so I found the title to be both amusing and ironic. My husband scored a 16. Nearby scores had titles aimed at females. He works with mostly women at an academic library, but is by no means effeminate.

The range to claim Asperger's Syndrome is 32-50. I suppose if you score in that range and want to pursue it further, you'll have to say something to your physician. Your doctor will then most likely refer you to a specialist (psychologist or psychiatrist) for an expensive diagnostic test. I'd only go that route if you think there might be a benefit in getting diagnosed. (That was the advice given to me by my counselor, whom I no longer need to see, and also my wise husband.)

Anyway, I realize many of you have probably stumbled upon this test already, but for the rest of you I'd highly recommend it. It takes quite a few minutes to complete, but is worth the time. The site is popular and has seven hundred or more comments. If you want to comment on your score here, I'd be happy to publish it and you'd have a better chance of having your comment noticed (well maybe by a few of us anyway.) Have fun.

Tuesday, November 27, 2007

Bylaws, Bylaws, Bylaws

What can I say? I'm mostly responsible for my very busy week. I suppose I'm feeling a bit edgy because there is a Central Michigan Autism Planning meeting tomorrow night and I haven't done all my "homework." We are getting ready to send in our application packet to Autism Society of America in order to become a recognized chapter. It really is exciting (no sarcasm here), but I have to proofread our bylaws before we meet because we are going to vote on them.

For some reason I volunteered to chair the bylaw committee back in early Summer. It seemed like a good idea at the time. It still does. I just have to do the work and am feeling guilty that I haven't attended to it sooner.

Procrastination generally is not a good idea, but sometimes other projects seem to come up first. Projects like taking down fall decorations, setting up a six-foot-tall Chrismas tree (a request from my two boys), and writing on this blog for instance. Not to mention laundry, laundry, and more laundry.

But now, I have no more excuses. The babysitter, a Central Michigan University College student, is here to babysit my four-year-old this afternoon. She'll also have my oldest son for about an hour. So soon, I'll be pulling out the folder with guidelines, printing out the most reason version of the bylaws and then reading and correcting it into a final copy.

Hopefully, all will go well. Our committee of six to eight used a template and then had two meetings to adjust the bylaws to fit the needs of our smaller group. (The template was written for a group at the state level.) It's only about eight pages long. The hard part is just getting started. It's a mental block of sorts. I'll feel better when it is done.

Monday, November 26, 2007

All this Autism Mom Wants for Christmas

Forget fancy jewelry, news clothes or state-of-the-art-electronics. All I want for Christmas is more time and energy. Counting today and Dec. 25 there are thirty days left to get a massive to-list done.

Add shopping, baking, gift wrapping, decorating to an already full agenda of giving care to two children, cleaning, cooking, chauffeuring the boys, writing daily posts and autism-related work and you get a pretty overwhelmed stay-at-home mom. I don't know what I would do if I had a full or part-time job on top to go along with all these responsibilities. I guess the baking would be first off the list...

Anyway, if I could draw a little better, I would create a cartoon of a petite woman laying flat on her back, covered with the several pages of printer paper it took to create her list. The only visible bits of this woman would be a small amount of curly brown hair and her toes.

But, alas I need to take a few art lessons before I start drawing effective cartoons and I don't quite have the time to attend sessions or practice sketching. Further, I haven't actually typed out my list. That is on my to-do list as well.

I'll do my best to keep writing posts this month (just in case someone actually has the time to read them during this all too busy season). Forgive me though if some of them are a little short. I know I don't actually have to post everyday, but for some reason I feel compelled. Maybe this same compulsion is why my list is so long. Oh well, I'll get most of my work done. I just needed to vent.

My best wishes go out to all other moms and dads who are also feeling overwhelmed by time and energy constraints this time of year. My only advice is to make your list, get one thing done at a time, and just keep going.

Sunday, November 25, 2007

Autism Advocacy Updates

When I first became involved in the local parent group (for parents with children who have autism), I learned that involvement meant more than just giving and getting support. It also meant education and advocacy. I'm comfortable with the education aspect, but advocacy is a little out of my comfort zone.

The least I can do, however, is provide updates of what is going on in the autism advocacy arena. Today, I am passing on information about two different items. The first is from ASA about the FY 2008 Labor, Health and Human Services and Education appropriations bill and the second item is from the Autism Society of Michigan about their new coalition: ACTION (Autism Coalition Targeting Insurance, Options and Networking).

From Autism Society of America:

House LHHSE Veto Override Fails

The house was just two votes short of overriding President Bush's veto of the FY 2008Labor, Health and Human Services and Education appropriations bill on November 15. The failed legislation included full funding of the Combating Autism Act and would have brought in critical financial support for autism research, services and awareness

From the Autism Society of Michigan:

ACTION has been recently developed by several organizations who are joining together to make needed changes for families of individuals with autism across the state of Michigan. The first issue for the Michigan ACTION Team is work toward appropriate insurance coverage for individuals with autism. Legislation for insurance reform has been introduced by Senator Tupac Hunter (SB No. 784 and No. 785). Companion bills are going to be introduced by Representative Kathy Angerer at a press release on December 4th, with House hearings scheduled for December 13th.

Saturday, November 24, 2007

Asperger's Syndrome: A Story in New Yorker Magazine

Sometimes it is quite helpful having friends as well as a husband who works at a university library. One of my librarian friends sent me a link to an online article for The New Yorker that she thought I'd enjoy. She was right. I did enjoy it.

The article, "Parallel Play: A lifetime of restless isolation explained," was written by Tim Page and appeared August 20, 2007. Page, who was diagnosed with Asperger's Syndrome in 2000 as an adult, has been a culture writer and music critic for the SoHo News, Time, Newsday, and the Washington Post where he won a Pulitzer Prize. He also has written books about Author Dawn Powell.

Not to be confused with Tim Page, the British Vietnam War Photographer, this Tim Page was born in San Diego California in 1954. In "Parallel Play," he writes of his experiences as an American child growing up in the 1960s. In this mini memoir, Page recounts his 'odd' obsessions, extraordinary musical tastes, and social ineptness. He also compares his writing at school (where he received some bad grades) with his writing at home, which was remarkably better.

I'd definitely recommend the article to parents who have children (of all ages) with Asperger's Syndrome. Reading the article provides a delightful venture into the mind of and "Aspie." One does not doubt that Page has the disorder and his revelations are both humorous and astounding. The article also has the potential of providing hope to parents and people with Asperger's Syndrome that someone with Asperger's can be successful.

I hope you'll enjoy "Parallel Play" as much as I did. It is definitely worth the time. I'll end this post with a favorite quote from Page's article. Page writes, "Little in life comes naturally—except for our random, inexplicable, and often uncontrollable gifts—and, even more than most children, we assemble our personalities unevenly, piece by piece, almost robotically, from models we admire."

Friday, November 23, 2007

Autism Stats and the Centers for Disease Control

Have you ever noticed that it is hard for people (at least in the United States) to talk about autism without mentioning the statistics? Does this phenomenon occur regularly in other countries? Canada? Enland? Brazil?

Here in the United states, the most relied on statistics come from the Centers from Disease Control (CDC). Many sites, including the one from the Autism Society of America, quote the CDC. Here is the probably the most quoted CDC stat: "[The] CDC’s Autism and Developmental Disabilities Monitoring (ADDM) Network released data in 2007that found about 1 in 150 8-year-old children in multiple areas of the United States had an ASD."

I just visited the CDC website and found much more than I was expecting. I, a newbie to the autism blogosphere, learned (and I realize that many of you already knew) about the history of autism stats, the difference between the words "incidence" and "prevelance," and all about the CDC's Autism and Developmental Disabilities Monitoring (ADDM) Network, which I did not know existed. I'd explain some of this, but the CDC does it better.

I am glad I took the time to read some of the original content. I would recommend the CDC's website for beginners as well as for those who just want to learn more about autism. With autism, there is always more to learn...

Thursday, November 22, 2007


Two days ago my younger son's preschool teacher asked him what he was grateful for and then wrote his answer on a small, brown turkey made out of construction paper. He responded that he was grateful for his Red Power Ranger costume.

Inspired I asked my nine-year-old with Autism Spectrum Disorder the same question. He said Ohio. (If, I remember correctly he said the same thing last year.) My son loves Ohio because his grandparents and cousins live in the Bowling Green/Toledo area of the state. He knows that he is loved and appreciated by everyone he knows in there.

As for me, I am grateful for the turkeys both my sons brought home as art projects this year. The little guy made his out of a paper plate (for the tail) with a pasted on brown turkey head which he drew the face on. He painted the tail with water color paints. My other small guy brought home a turkey that he colored in vibrant fall colors which he then cut out with scissors.

I'm also grateful that I found a drawing of a turkey in my older son's room. He had traced his hand and put on the remainder parts like the eyes, feet and gobbler. Then he colored it blue and brown. He is just starting to do things like that on his own, without any coaching from me. It seems like a miracle.

As for my husband (whom I did not ask), the obvious answer would be spending time with family which is important to me also. He would also definitely say football! My hubby plans to watch a lot of it (especially college ball) before the holidays are over. I don't mind--especially since I'll be doing a lot of shopping, baking and decorating in the next few weeks.

This is the first Thanksgiving I will not get to spend with my dad, a retiree. He and his wife (my step-mom) decided to go to Florida earlier this year. I'll miss him, but I know that circumstances change throughout one's life. One has to appreciate and be grateful for the things that one has even if it is a small collection of paper turkeys. Fortunately I have so much more...

Wednesday, November 21, 2007

Holidays: Handling Autism-Related Meltdowns

Oh, the holidays. Thanksgiving and Christmas can be fun. They can be stressful. They can be really, really stressful for a person with Autism Spectrum Disorder (ASD) and their families. Schedules change. People become busier and more stressed out than normal. Surroundings become nosier, or in some cases, unfamiliar. In other words, the holidays have the potential to be filled with triggers for meltdowns.

Meltdowns can be stressful for the caregivers of persons with ASD--especially if the child is young and the caregiver doesn't have a lot of experience. A few months ago, a friend of mine forwarded me some excellent tips she received from her Yahoo group, Everyday Miracles. The following tips were written by Thomas A. Brown, Executive Director –Psychologist of the Autism & Behavioral Support Center in Auborn Hills, Michigan.

Handling Meltdowns

• Neurological overload- when the nervous system becomes too stressed and starts to
release adrenalin and other stress hormones.
o Control Issues- Can't have own way, needs to be in control of the action and the
other person and it then proceeds to an overload.
o Desire to remain in a static system- Difficulty with making transitions, changes, does not feel safe in a dynamic system. This then proceeds to a neurological overload.
o Lack of competence – lack of scaffolding – child is unable to meet the expectations that were placed on them. Causes increased stress and anxiety that can lead to an overload.
o Too many changes-
• Too many rapid changes
• Not enough time to process changes
• Fearful of change
• Noisy and confusing environment
• Going from [vacation]to starting school.
• Anticipation anxiety of future events

• Signs of a Meltdown
o Pupils are wide and dilated
o Increased heart rate
o Increased anxiety
o May look like a panic attack
o Can last up to twenty minutes

• Handling Meltdowns
o Slow things down
o Increase the zone of connection
o Use declarative language to let the child know they are safe
o Avoid using bribes and pay-offs
o Attempt to guide into a simple/competent regulatory pattern
o Be aware of your own response
o Remain calm when child undergoes periods of distress
o Use a calm soothing voice
o Be aware that as you raise the volume of your voice, it may encourage the intensity of the meltdown.
o Gently try to stop the action.
o Increase facial gazing with a soothing look of safety.
o Gently bring your child's hands to your face. Still holding hands, put your hands on your child's face.
o Do not offer a lot of choices or ask a lot of questions.
o Attempt to wait the situation out and then find a very brief moment where you can
start to guide the child into a competent, previously attained regulatory pattern. "Let's row your boat" – a gentle back and forth regulatory pattern.
o Provide the child with more support from the adult so that the child feels competent.
o Use fewer words– go to a whisper or at times, no words.

o After the meltdown:
• Debrief yourself.
• Was the change or demand too much?
• Were there too many questions?
• Was the environment chaotic?
• Was there a breakdown in the scaffolding or zone of connection?
• What did not make your child feel safe?
• What helped your child?
• What helped yourself?

Tuesday, November 20, 2007

Shopping Tips for Children with Autism or Asperger's Syndrome

When someone asks me what kind of gift my four-year-old would like, the answer is easy. Anything and Everything. My youngest son actually asked me when Santa was coming last April. I told him the Easter Bunny would come first and bring a few small gifts.

I draw a blank, however, when thinking about what my oldest son with autism would like. It's getting easier because the nine year old is finally playing with more toys. If someone asked him what he wanted he'd probably answer "Backyardigan Toys" or "froggys."

However, he already has about twelve stuffed frogs (which he does play with) and a bunch of other types of frogs (not as liked as the stuffies.)He'd really like a real frog and I'm thinking about getting him a fully aquatic frog(meaning it would never leave its tank.) I need a little more time to decide, but there might just be an albino frog swimming in a tank for him on Christmas morning.

As for Backyardigan toys--there are only so many on the store shelves. Backyardigans is a cartoon for preschoolers, but he loves the show. I don't mind that he likes it, but it is hard to find the toys when it is not Christmas. He was disappointed when he searched the toy shelves of a local discount store last August (his birthday month.)The only Backyardigan toy we found was a game. We bought it because he did not want anything else. Hopefully there will be a bigger selection for the holiday shopping season.

There are, however, a few other things my son likes besides frogs and Backyardigan toys. This year I have vowed not to draw a blank when asked. Organizing my thoughts in this way will help me be better prepared when being questioned about gifts for my boys. I can also refer them to this post in case I might have forgotten about one an idea or consideration.

Please see the following paragraphs for considerations to make while shopping for a child with ASD. I have also created a small list of favorite types of gifts. If someone has another consideration or favorite type of gift, I might add it. Please feel free to comment.

What to consider when buying for a child with Autism Spectrum Disorder (ASD)

1. Does the child seek out certain textures? Soft blankets, stuffed animals, or toys offering a variety of textures might be a good idea. Or, ask the parent if the child would like a weighted blanket. Note that making a weighted blanket is cheaper than buying one.

2. Is the child known for liking a particular subject, object or animal. If so, then ask the parent what sort of thing (book, stuffed animal, game-related, etc.)is best to buy.

3. Gift cards can be OK depending on the individual, but be aware that some people with ASD become overwhelmed in stores because of sensory problems (bright lights or loud sounds, for example). It took a long time before I was able to bring my son into certain stores without worrying about him having a meltdown.

4. Clothes can be OK also, but note that certain textures like wool or the tags in clothes can be bothersome. If using socks as a stocking stuffer for a friend or relative, please realize that the seams at the ends of socks have the potential to drive some (not all) people with ASD crazy. Blue Jeans may feel "itchy" or may be alright, but again it depends on the child. Buying clothes in the child's favorite color or texture may also be a good idea.

5. Take the child shopping for their gift. My son's grandparents once took my him shopping for a birthday present. He chose a toy that he played with constantly for almost a year. A shopping trip with a person with ASD can work out well--especially if someone who is familiar with meltdown triggers is along for the trip. Some stores may work out better than others, so ask the parent what stores to go to or what stores to avoid.

Consider avoiding these types of toys:

1. Does the child have any sensitivities to sound or light? Toys that blink and/or make loud sounds may make the child with autism uncomfortable.

2. Does the child still put toys in his or her mouth? If so, you may consider avoiding toys with small pieces and toys with magnets.

3. Large toys may be tempting to buy, but storage is often presents a problem for parents (not just the parents who have children with ASD).

My favorites:

1. Art supplies. We can never have too many sets of water color paints,washable paints and markers, or too glue or construction paper. I also like them because they don't take up much space. "Model Magic" by Crayola Inc. was and is a hit with my child. He has made some great little pots that have had staying power. The clay-like substance (if stored at room temperature) also doesn't crumble or make much of a mess.

2. Books. They store away easily. Children with autism seem to really appreciate nonfiction books, but fiction can be great too. For younger children, I'd suggest books from the "Best Me You Can Be" series or from the "Mr. and Miss" series by Roger Hargreaves. The former provides great social tips for youngsters and the latter is a cute little fictional series that puts an emphasis on emotions. Both series are available through scholastic books. Books with flaps and textures are also a good idea for younger kids.

3. Small sensory toys. Balls with nubby textures and vibrating toys that operate by pulling a string, etc. have been played with by both of my boys.

4. Easy games with not a lot of strategy involved. Hungry Hippo is a favorite game in my house. Connect Four is a good one too because one doesn't have to
play the game. My boys like dropping in the checkers and/or making patterns.

5. Clothes. My son has liked to get clothes since he was six-years-old or younger. Most children probably prefer toys, but some kids like to get clothes as well.

Monday, November 19, 2007

Asperger's Syndrome and Creative Bowling Strategies

My two boys, my husband and I joined other families at a bowling alley for the monthly field trip for participants of a summer arts camp for children with Asperger's Syndrome and high functioning autism. Seven other campers, their siblings, and at least one parent bowled two games. For some of the campers, it was their first time for bowling. For most of the others, it was a rare opportunity. Many gutter balls were thrown.

It was a parent, however, who was actually the bowler who could have won the blooper award for bowling that day. During one turn, the ball flew out of the hand during the backward swing. It would have rolled backwards quite a bit. However, the vigilant spouse of the bowler stopped the ball in two seconds--a miracle in itself because the spouse isn't that coordinated either. Mostly, the successful stop was the result of being in the right place at the right time. Anyway, quite a few spectators saw that blooper and laughter abounded. The bowler laughed along with the rest of us.

Everyone was a pretty good sport, but I did see some strategies employed to get better scores. One fourteen-year-old bowler did not hesitate when taking the opportunity to use a ramp that small children use to roll the ball down the lane. He also tried rolling the ball between his legs. I'm not sure what his score was, but his mom and I noticed that he was attempting (without much success) to change his score from the control panel. She intervened and he did not protest that much when she stopped him. His strategies must of not have worked too well.

Another boy, almost thirteen, tried changing lanes, shoes, and balls to try to do better. I'm not sure how much luck he had as he was several lanes down from my family. I only know about those strategies because his mom told me.

One novice threw gutter after gutter ball, but he kept a smile on his face and appeared to be having fun. This bowler's strategies were less obvious. I noticed he was able to bowl the proper way without any help. I imagine this boy will do pretty well in the future if he gets more opportunities to bowl. He just needs to practice technique.

My nine year old (who needs physical and occupational therapy)and four-year-old boy both used one of the three ramps available. For some reason the older boy did well and received a 104 for his first game. It was one of the higher scores of the day. My little boy only got a fifteen even though he used the ramp and had help with positioning the ramp. He became quickly frustrated, though a heavier ball improved his score a little bit.

Everyone seemed to have a good time, although there obviously wasn't a lot of opportunities for the kids to interact with each other. It was parallel play at its best.

Some tips for autism families when bowling:

1. Call ahead to reserve lanes or to make sure there is open bowling. Keep in mind many alleys close lanes to walk-ins for bowling leagues.

2. Plan to go when there isn't much smoke because some people with Autism Spectrum Disorder have sensitivities to odors and may also have allergies.

Sunday afternoon worked out well for us and I suspect Saturday afternoons might be OK too. University alleys usually have open bowling times for community members and smoking bans in buildings.

3. Let the kids come up with their own strategies to do better unless they get really frustrated.

4. Keep an emphasis on having a good time and model good behaviour by laughing at one's own mistakes.

5. Bring headphones or ear plugs along if child has sensitivities to sound.

6. Bring favorite snacks along--especially at a bowling party where food is served. This is important if the child prefers only a few foods or has food allergies and/or sensitivities to certain foods.

Sunday, November 18, 2007

A Mom's Perception of the Student Council for Exceptional Children

Last night The Student Council for Exceptional Children (SCEC) at Central Michigan University (CMU) held their first game night for families who have a child or children with autism. About twenty students and their advisor were on hand to help children play games, make puppets out of paper bags, color, and just have a good time in general.

The students were well organized, enthusiastic and very willing to help out with bathroom breaks and behavior difficulties. Game night was held in a large room in a student residence hall. There were plenty of tables for activities and also plenty of space to roam around.

The bad news was only three families showed up. The good news was that the six boys (four on the spectrum and two siblings) in attendance had a generous amount of attention. There were three to four helpers for every child and most of the boys loved being the center of attention of their own little groups.

My oldest son (the one on the spectrum) soaked it all up. He sang his favorite song about froggys two different times to small groups of students gathered around him. He also made a frog puppet and decorated a life-sized version of himself after a student drew an outline around him.

My son did become overwhelmed with the amount of activity choices at one point and zoomed back and forth across the room a few times. But he was OK after a few minutes and settled down for the rest of the time. He even cried a little bit because he did not want to leave and insisted on coloring a picture as a last activity. The sympathetic student participants allowed him to do so even though it was time to clean up the room.

My youngest boy also had a great time and did similar activities. He really liked the crafts and playing the Junior Monopoly game with his brother for a short time. My husband and I were there, but we didn't have to do much other than chat with the other parents, the college students and their advisor.

I had two students come to me to ask out if they could help out with field trips I am coordinating for a group of children on the spectrum that are involved in an arts camp for social and emotional growth. I gladly took their email addresses and am now thinking of ways they can help me out. I know that they are sincere and I am hoping to get them successfully involved.

Most if not all members of the SCEC are future special education teachers who want to learn more about autism. Thanks to the efforts of two other energetic moms in my parent group, the SCEC members are getting opportunities to learn. The relationship began with a chance meeting between a parent and a SCEC member. Another parent, who is also a student, attended a meeting of SCEC. AS a result of these interactions, a small panel of parents and children were invited to speak to the group. Game night was the next step.

The relationship between the parent group and the SCEC members is mutually beneficial. Parents get some enthusiastic help and the students get a chance to interact with our children with Autism Spectrum disorder. Further, the children on the spectrum will get extra opportunities to develop various sorts of skills(social, motor skills, etc.)

Despite the low attendance, the event last night was successful because all participants seemed to enjoy the event. SCEC is hoping to hold more game nights in the future. Now all we have to do is figure out how to attract more families to this wonderful event.

Saturday, November 17, 2007

Insurance Legislation to be Introduced in Michigan

The last three or four paragraphs of this post comes straight from a email I received via a forward from a representative of the Autism Society of Michigan (ASM). The email was about the insurance legislation that will benefit autism families in Michigan. The bill is to be introduced in December of this year.

I think it would be great news for autism families in Michigan if this legislation passes. As of now, families who have insurance are having trouble getting coverage for various types of expensive therapies (speech, physical, occupational, etc.) for children with autism.

Three years ago I decided to pass on Play Therapy for my son because it would cost us $300 per month for four, hour-long sessions with a therapist (who would have come to our home). The therapy center told me that I could not use insurance (of the type my family has through my husband's job) to pay for the therapy. As a result, I decided to spend money on much needed respite (babysitting) instead.

While I'm all for this legislation, I am not sure that it will pass. Politicians (senators, representatives and the governor) will most likely consider what the financial impact of this legislation will be before accepting or rejecting the bill. Michigan is suffering economically right now. Manufacturers and jobs have been leaving the state for years and the financial impact has been catastrophic for the state.

This fall, the two houses and the governor had so much trouble passing the annual budget that it made the national news. Taxes for services such as bronzing baby shoes and tanning were approved. The budget finally passed, but not before a state government shutdown became a near reality. The last time I heard, the budget is still being contested.

My biggest concern is funding for public schools and public universities. My family has received an abundance of help from both the local public school and the nearby university (which has provided indirect help through a vast supply of volunteers for various special needs causes). I would hate to see the budget cut for both institutions because money went elsewhere.

I realize that others may feel differently and I welcome comments that both agree and disagree with my opinion. As long as the comment is respectful (in terms of not calling me or people who feel the same way idiots), I will publish it.

From ASM:

Autism insurance legislation will be introduced into the Michigan House of Representatives in early December! Representative Kathy Angerer will be introducing two bills requiring insurance companies to cover diagnosis and treatment for Autism Spectrum Disorders. These Bills are companion bills to Senate Bills 784 & 785 that were introduced into the Michigan Senate by Senator Tupac Hunter in September. A press conference is scheduled for Dec. 4th at 12:30pm in Room 426 of the Capitol Building in Lansing. The press conference will announce the introduction of the legislation. Anyone who wishes to attend the press conference is welcome! Please come and show your support.

A hearing in front of the Health Policy Committee is scheduled for Dec. 13 at 9am. The hearing will be held at:

MI House of Representatives
House Office Building
Room 519
124 N. Capitol
Lansing, MI 48933

Everyone who can come to the hearing is encouraged to attend! We need a strong showing to let our Representatives know how desperately this legislation is needed!! This is also the time to get those personal stories written and sent to us. Each letter will be attached to the written testimony at the hearing. Our email address is: Please include your address so a copy can also be hand-delivered to your local Representative's office in Lansing on the day of the hearing. We have worked very hard to get these bills introduced, but we need your help to ensure they pass and become law! Your legislator’s need to hear that Autism Insurance Coverage is an important issue to you and your family. Together we can pass this important legislation!

Friday, November 16, 2007

Conference Day

It's Friday, November 16. My son just had three days off of school. The first two days were conference days. Thursday was hunting day. In Ohio, we never had hunting day off from school. (I did not move to Michigan until I was almost 25-years-old). I also did not hear about kids getting a day off for hunting during the seven years we lived in Lansing. But, here in Mt. Pleasant, MI, school was closed for hunting day. We are not really a hunting family, so my son was more excited about conference day.

"Today is con-fer-ENCE DAY!," my nine-year-old sang. He sang it over and over on Tuesday morning. He knew I had a conference with his teacher in the afternoon. When his beloved babysitter emailed in sick, he became really excited about the possibility that he'd get to go. I knew that he'd do his best to keep all the attention on him if I took him and his little brother with me. Talking to his teacher about important matters would be difficult, but I did not think I had a choice.

I did not really want to bring my husband into it--especially as I didn't get much notice to find a back-up plan. But, my sweetheart found out from a co-worker who happens to be a mutual friend of ours. (I called her in a panic when I could not get a hold of her mom.) A very nice reference librarian agreed to fill in my husband's shift at the reference desk and my boys and I drove to the university library to pick him up before heading to the school. My son still wanted to go to the conference, but his consolation prize was to play on the playground with his brother and dad. They were laughing and playing when I came out about a half-hour later, so I know they had a good time.

The conference also went pretty well. Behavior was not an issue for the first time in four or five years. He's actually doing great in that area. However, handwriting is a bit of a struggle for him. His special education teacher and I talked about how he ritualizes writing his name. He always dots his "i" with a huge dot and the last three letters are always taller than the rest even though those letters are not the tall ones in the alphabet.

His teacher noted that the dot wasn't a big issue. However, she did say that his sense of letter proportion needs a lot of work. We decided I could combine his spelling word practice and writing together and also agreed that I should try not to overwhelm him with too many rules about not ritualizing. I'm going to try to break his habit a little bit (one letter maybe) at a time and will continue to communicate with the teacher in the time period between conferences.

Before I left, my son's teacher handed me a handwritten notecard with three apples on the front. I read it after leaving her room. In the card she thanked me for attending the class field trip to a pumpking patch, told me she enjoyed having my son in class, and predicted he'd have "a great future."

Thursday, November 15, 2007

My Chromosomally Normal Male

On October 2, my son and I took a two-and-a-half hour drive to Grand Rapids to see a medical geneticist. I had asked my pediatrician for a referral because I was hoping to rule out a syndrome or two. A little over a year ago, we found out my oldest son has only one kidney that is only working at about sixty percent. When one puts that together with a history of growth and developmental delays, one starts to worry that maybe there is something else to be concerned about.

Unfortunately, for my son, he had to submit to a blood test after we spoke to the geneticist and the genetic counselor. He protested some. "You are being brave," I said. "No, I'm not!", he argued. The lab technician and I needed a little help holding him down, so the lady who checked us in came back. "See that wasn't so bad," said the lab technician. "Yes, it was," he told her before we exited her lab and headed for the exit in the waiting room. "That hurted," he told me. "I know, I'm sorry," I said, knowing I'd probably hear more about it on the way home and then some.

The results arrived on Halloween Day. I opened it. Three papers were in the envelope: A letter to our pediatrician (which had a Cc to me), A Fish Analysis Report (he tested negative for a 22q11.2), and a Chromosome Analysis Report. From the letter: "Your patient was seen in the Spectrum Health Pediatric Genetic Clinic on October 2, 2007. As part of his visit , genetic testing was undertaken for chromosome analysis and 22q11.2 deletion syndrome. The results of the completed genetic tests are normal. This information will be shared with the family."

"At this time we have no further recommendations from a genetics standpoints, and do not anticipate a need to see this family back again for follow-up."

The other two papers, the reports, were a mishmash of big medical words and a bunch of numbers. However, there were interpretations anyone could understand on both papers. The interpretation that jumped out at me was on the chromosome analysis report. It read, "Chromosomally Normal Male." '

"That's good to know," I thought, though his medical file in his pediatrician offices indicates that my son is not as 'normal' as most nine-year-old boys.

I was glad that the results provided good news. However, under the interpretation for the chromosome report was an additional sentence. "Triplication of the SNRPN region has been reported in some cases of autism. If you wish to utilize this probe please call the Cytogenetics Lab," it read. The sentence intrigued me, but for now I believe I am done with the genetic inquiries for awhile.

I know that my son has autism. We have been to the appropriate doctors and my son has been screened by an Autism Impairment team through his school system. It could, I suppose, be beneficial to know whether or not my son has the afore-mentioned anomaly. However, my feeling now is that it is unnecessary to probe any further.

Wednesday, November 14, 2007

Update: FY 2008 Labor, Health and Human Services and Education Appropriations Bill Vetoed

I did some earlier posts about what was then the impending veto of the FY 2008 Labor, Health and Human Services and Education Appropriations bill. This legislation was to benefit various autism programs at the Centers for Disease Control and Prevention, National Institute of Health and the Health Resources and Service Administration. However, I had an email yesterday from the Autism Society of America (ASA) announcing that the President vetoed the bill because of concerns about the funding levels of the legislation.

From ASA:

"This morning, President Bush vetoed the FY 2008 Labor, Health and Human Services and Education Appropriations bill. This bipartisan bill had strong support in both the House and the Senate, but the President objected to the overall funding levels of the bill, which includes modest increases for vital programs - most of which have experienced significant cuts, lost purchasing power or both over the past three years."

ASA is hoping that its members and other interested citizens will contact their Congressman to encourage an override of the veto. The organization is expecting the override to occur within in a short time period.

Tuesday, November 13, 2007

Organizing a Support Group

Last night my parent group met at our local university's preschool lab room from 6 to 7:30 p.m. The student organization, Association for the Education of Young Children (AEYC), watched the children of some of our parents for free in adjoining preschool room while five of us (four parents and a college student) chatted about life with Autism Spectrum Disorder in the family. The rooms we were using were also free of cost.

I cannot be credited with attaining the room or the free babysitting. A friend of mine who has two boys on the spectrum is the powerhouse in charge. She organized our group four years ago and has done some serious social networking to get both the rooms and the babysitting.

I met the organizer when our boys were in the same classroom. She has a wonderful southern accent, a friendly demeanor, and a knack for leadership. I do not consider myself to be a leader as much as a supporter, so I just try to help out when I can. I attend most of the meetings, help with the set up and lock up of the room, and volunteer to help with the various activities she has planned (more on this soon). My philosophy is that if you get help, you should also give help. At the moment, the help I'll try to give is a few tips for organizing a support group.

1. Find a location. There should be some rooms available at no cost in your community. See if your church, local library, or local university (if one is present) has a room available for meetings. A local bookstore, depending on its size, may also have a room available for meetings. If the group is soley for individuals with ASD or such an individual is attending the group, keep sensory issues in mind. Bright lights and loud sounds can be difficult for some individuals on the spectrum to tolerate.

2. Reach out to potential members. Note that this group can be for parents and/or individuals with ASD. A newspaper notice can be effective in attracting members, but there are other ways to inform people about the group. One could post fliers (with permission) on bulletin boards at businesses, public institutions and even doctor's offices.

Word of mouth may also work. If an acquaintance mentions they know someone with ASD, then arrange for that person (or a family member) to be contacted. The acquaintance may not want to give you their friend's contact information, but they may be willing to call the person for you. Finally, attend events that people with special needs might also attend. These events may be affiliated with Special Olympics or your local Parks and Recreation Department.

3. Keep a contact list of all interested people. Email is my group's most effective method of communication, but sometimes it is also necessary to contact someone by phone. Use this list to send out or call in reminders once you have the meeting times arranged. Keep in mind that people can be busy and their lack of attendance does not necessarily mean a lack of interest.

4. Choose a meeting time and keep it consistent. For example, my group meets every second Monday of the month at 6 p.m. Survey interested members to see what day and time will work best. Note that some meeting rooms may have limited availability. In our case, we could pick any day and any time (after five or so), but some meeting rooms may be in demand. It also might be impossible to choose a time which works for everyone. Just do your best.

5.Network to expand and maintain membership. Other people interested in joining or helping your group may be teachers, various professionals or retired persons. Sometimes just a phone call to interested persons to see how they are doing can encourage someone to attend. Our leader is very good at this technique.

6. Hold Family Game Nights. Guys seem to be more likely to attend events such as these.

I hope that these tips will be helpful. I may be willing to add a tip or two if someone posts a great idea. The six tips I just posted were obtained by observation and from being a member of such a group for four years. When my family moved in the area five years ago, we did not not have much in the area for families who had children with ASD.

My friend changed that by being proactive and starting her own group. As of now, we are merging with two groups from other towns to form a chapter of the Autism Society of America. We are in the final planning stages and are very excited about the possibilities that are emerging. More on this later. Best wishes--JML.

Monday, November 12, 2007

Veterans Day Tribute: Recognizing Veterans with Differences

November 11 is the day we usually honor United States Veterans. However, today is the day marked on the calendar as the observance day for U.S. Veterans. (So if you live in the U.S., don't bother checking your mailboxes.)

Although I recognize the sacrifice of all military personnel, this post is dedicated to the men and women with ASD who have served in the military. We, as a society, are just starting to get better at recognizing the signs of Autism Spectrum Disorder (ASD) including Asperger's Syndrome. There are a lot of people out there (most likely born before the 1990s) who have always known that they are different, but do not know they have Asperger's Syndrome or high functioning autism.

In the past, many of these people were described as weird, odd, geeky or nerdy, but were not suspected of having a neurological difference. This makes me wonder how many people with Asperger's Syndrome (Aspies) or High Functioning Autism have served in the military. I'm sure that while some people with unidentified ASD were sent home during basic training as being adaptable to military life, others did quite well and thrived because of the rigid structure of military life. (Not all Aspies do well with rigid structure, but for others a strict schedule is most welcome.) Some of the "quirks " of Aspies often include having a specialized knowledge or skill. Many people with Asperger's Syndrome or autism are actually quite bright and have gifts that could benefit the military.

It may have been a good thing that our society has not had a good record of identifying ASD, which has really only been acknowledged since the 1940s. "Infantile Autism" was described by Leo Kanner in 1943. Hans Asperger wrote the paper describing what is now labeled "Asperger's Sydrome" in 1944. Nowadays, it is getting easier to spot an Aspie or someone with autism, although there are still segments of the population who are still clueless about ASD.

Why might it have been a good thing that our society has not been able to recognize Asperger's Syndrome? Because, having the label might have meant that qualified individuals who would have done quite well in the military would have been discouraged from joining the military by parents, mentors and maybe even recruiters (unlikely now because recruitment is down because of the war with Iraq).

By now, those of you who are up-to-date with autism-related news, may be thinking of Jared Guinther, the boy (described as having moderate to low functioning autism) who was recruited into the army in 2006. To the relief of his parents he will not be labeled a U.S. Army Veteran in five or so years. To those of you unfamiliar with the story, Jared signed up with a recruiter after being lured with a hefty sign-up bonus and a college scholarship. He passed a test in an Army Recruiter's office and was soon pegged to be a cavalry scout, which has been described as one of the most dangerous jobs in the armies.

His concerned parents (who feared their would die in Iraq) took Jared's story to the media and wrote their local congressman. As a result of his parents' efforts and a focus put on unethical recruitment methods, Jared was released from his military contract. I do not blame the parents. I would not want to let my own impaired son go to Iraq and in some ways I am grateful that my young patriot has a huge medical file that may disqualify him from service. My guy has known the Pledge of Allegiance since the age of four and most of the words for The Star Spangled Banner since the age of seven so I believe it to be quite possible that military life might tempt him someday.

However, although I think it's probably a good thing that Guinther will not be serving in Iraq, I do know that people with ASD can surprise us sometimes. Who, really, can accurately predict how anyone will do in battle? There have been plenty of soldiers without ASD who have frozen up in battle, died, or have been inadvertently responsible for the death of a comrade. People with ASD are all different, so the ability to serve in the military should be reviewed on a case by case basis. They should not be automatically be disqualified from the military based on the respective label. It's hard enough for some people with ASD to get jobs as it is. For those of you still concerned: Remember that if a person is truly incompetent, it is likely that the individual will fail basic training and be sent home.

Sunday, November 11, 2007

What is Normal Anyway?

Four women crowded around a cute seven-week-old baby boy as he struggled to push solid matter out of his little body. One of the women was his mom and she was trying to help him. She had placed him on a couch protected by a diaper pad, opened the diaper and dabbed his bottom with a wipe as progress was made. The rest of us cheered the little guy on.

I was as encouraging as the rest, but was also thinking how silly the three of us must have looked. 'Is it normal to watch such an event,' I thought? Probably not, although none of us have been classified as neurologically or psychologically different and none of us were grossed out because we have all changed plenty of diapers. Besides, we all wanted to see the struggling youngster feel a little better. He cried and made faces until he found some relief. In the meantime, we adults were all a bit gaa gaa.

The moment I just described happened after a "Girl's Day Out," which meant eating brunch, shopping at craft shows and having dinner with four other "girls." It was nice to get out without children in tow and just shop and chat. I can't remember the last day I had been able to find the time to shop for anything other than household items. I enjoyed picking up small handcrafted items like Christmas ornaments and scrubbers (scrubbies) to tuck in with other gifts. I even bought something for myself--something I haven't done for awhile.

As it was a Saturday, my husband was able to watch our nine-year-old boy with autism and his four-year-old brother. He took them to McDonalds and then out shopping for groceries. He let them choose yogurt marketed to kids as well as Jell-o. He even let our nine-year-old leave his side to get Pringles and peanuts. Our boy, with an excellent sense of direction and a love for salty foods, knew just where to find the items. Later, my husband had them help out by cleaning our house. (Believe me this is quite an unusual event. ) The four-year-old picked up toys and the nine year old vacuumed.

I couldn't believe it when my husband called to tell me the news that my son cleaned two floors in our house. Yes, I always had my older boy help me a bit by wrapping up the cord of the vacuum cleaner when I finished vacuuming and he always enjoyed using the hose and extensions to pick up bits the vacuum cleaner could not reach. But he never showed a lot of interest in pushing the appliance around. My husband said the boys were glad to "help mommy" while I was away. I did note that both boys were pretty proud of their efforts.

When I came home, all of my guys crowded around me to see what was in my bags. My two boys were pleased to see the chocolate dipped pretzels I picked out for them. I didn't have the heart to come back empty handed. My four year-old tried to claim some of the other stuff I bought and was attracted to the scrubbies for some reason. My nine-year-old was content just to look.

It struck me how ordinary a day my guys had despite the presence of autism in our house. They might of had a zany moment or two, but I think that I, along with two unnamed others, could probably get the award of the day for having the nuttiest moment.

Saturday, November 10, 2007

Bigfoot in the Woods

Last weekend I had the pleasure of hiking with Bigfoot, my two sons, and my older son's friend in the woods down the street from us. My Bigfoot, however, does not have big feet. He wears a size ten shoe. My son's friend, a twelve year old, just happens to share a fascination of the legendary creature said to have really big feet with the guy I married.

The twelve year old, who became Bigfoot on Halloween, (with the help of his mother who sews) brought his costume on his last overnight stay. His hope was to lend his costume to my certain someone who had talked about wearing such a costume in the woods the last time the twelve year old stayed overnight. To all three of the boys' (ages 4-12) delight that certain someone agreed.

The sleepover occurred on a Saturday night. The next morning the sun shone through crisp fall air. By 9:30 a.m., five out of the six people in my house were eager to set out for the hike. What can I say? I'm not a morning person. Outnumbered I went along. I also had to drive, because Bigfoot insisted that we all would be better off if I was behind the wheel.

There was still a lot of color in the woods last weekend. Golds, browns, reds mixed with some greens abounded. But I probably was the only one who noticed. My bigfoot kept disappearing only to jump out at my two sons who squealed with delight. The twelve year old, now without a costume, played the same disappearing game. His friend, my nine-year-old son with a mild form of autism, was a little bit baffled by the twelve year old's frequent disappearances.

"Why does he keep running ahead?" he asked me.

"Because he is playing the same game as your dad," I said.

My answer did not quite register with my son. I provided the same answer at least three more times. The last time he asked, my son was really concerned about his friend. We, along with Bigfoot and the little brother, were at the end of the trail and his friend was nowhere in sight. I kind of suspected that the twelve year old was hiding behind our van. My suspicions soon proved to be true.

"Rahhhh!!!" Bigfoot, in the form of a boy jumped out at us one last time. The hike and the game was over. Pictures to provide proof of the hike with Bigfoot were taken. Everyone (even me I guess) had a good time. The only mild disappointment was that there was no one else to spot Bigfoot and to possibly be fooled that it was the real deal.

Only one other person saw us. She was walking her dog down the street. I noticed her glance at Bigfoot as he climbed into the passenger seat.

"We hiked with Bigfoot today," I explained, feeling rather sheepish. She smiled and continued on her walk. I drove Bigfoot and the rest of the crew home.

Friday, November 9, 2007

American Academy of Pediatrics Releases Autism Reports Urging Early Screening

Two reports released by American Academy of Pediatrics (AAP) reveal good news to those of us in the autism community who are working to provide education, advocacy, and support to families and individuals who have Autism Spectrum Disorder (ASD). The first report is titled "Identification and Evaluation of Children with Autism Spectrum Disorders." According the news release from the AAP, the authors reviews the "subtle early signs" of autism and advises pediatricians to know the signs of various developmental disorders and to ask caregivers if they have any concerns about the development or behavior of their charges during Well Child Visits.

The AAP news release also discusses a second report which is titled “Management of Children with Autism Spectrum Disorders." This report discusses the importance of early intervention and how it is crucial for the effective treatment of children with ASD. The report also strongly advises intervention as soon as the ASD diagnosis is seriously considered rather than deferring until a definitive diagnosis is made.

Although I did not get to read the entire reports because direct online access was blocked on the AAP's website, I am still delighted with the news that these reports exist. Based on the descriptions of these reports, I believe that the authors offer pediatricians (and hopefully family doctors who treat young patients) excellent advice. I particularly am happy with the author's advice (in the second report) to consider suggesting early intervention (a hodge-podge of various therapies and early education) as soon as the ASD diagnosis is considered rather than waiting until a definitive diagnosis is made.

In my family's case, our oldest child was six before a Developmental-Behavioral pediatrician made the definitive ASD diagnosis. (We had to wait eighteen months for an appointment.) A four-person Autism Impairment (AI) team, working within our school system, observed my son (then in an early education class) for a total of 80 hours (20 hours per team member.) The team then gave our son the AI label. He was five years old. My son's pediatrician considered the ASD diagnosis slightly before the AI team did their work.

Five years ago, I noticed it was the school system which prescribed the first official early intervention program for my son and that it was the school system which provided more help. Because of my son's diagnosis history, it wasn't too difficult for me to conclude that the medical community is behind when it comes to the diagnosis and treatment of autism. In my opinion, schools (at least some school systems anyway) are way ahead in the game.

This is especially true when it comes to identifying ASD and helping young children on the spectrum. Pediatrician's might have a clue about ASD, but family doctors in particular may have difficulty in spotting the signs (especially the early signs listed in first report) and suggesting treatment. This opinion is coming directly from my own experience with the whole diagnostic process.

When we first started having concerns about our son's development, our then family doctor (in Lansing, MI) seemed to have no idea what was going on with my son. I don't think he was aware of the signs of autism. Instead, when I brought my son into the doctor's office at age three-and-a-half, the doctor suggested I take him to a developmental psychiatrist. I might of done this, but the appointment and screening would have cost us $1,000 with insurance only covering $400. Facing the overwhelming cost of a $600 fee, we said "no thanks."

When we moved to Mt. Pleasant, MI for my husband's new job when our son was four-and-and-a half, I decided that maybe I better take my two children to a pediatrician instead of a family doctor. I had other medical-related concerns for my older son. These concerns included a delay in physical growth as well as developmental growth. (Just before we moved from the Lansing area an endocrinologist determined my son had the bone growth of a two year old--a delay of about two-and-a-half years.)

Before we moved, I realized that I should take my child to see a pediatrician rather than a family doctor. Seeing a family doctor had been good enough for my husband and I when we were growing up, but I was coming to realize that my son had special needs that probably would be best addressed by a pediatrician. I hoped that our son's new doctor would zone in on what was going on developmentally. She listened closely to what I had to say and then handed me some screening papers for autism.

I scoffed at the idea of my son having ASD, but as I scanned the questionnaire I started to face the reality that my son does indeed have high functioning autism. By this time a regular preschool teacher had already helped us get screening from the school system. This screening resulted in my son being placed in a special education preschool class three months months before we moved.

My point is that if my family doctor had the screening tools and the prompting to screen all children for autism, my son might have had early intervention at least a year earlier. He's doing well now, but who knows how much better off he would have been with an extra year or so of help.

My thanks goes out to the authors of these report on behalf of all families who are in need of a diagnosis and early intervention. My biggest hope is that family doctors take note of these reports as they seem to be in need of advice when diagnosing and treating ASD.

Thursday, November 8, 2007

Aqua Dots: Moon Sand and Floam Saved us from Potential Danger

Note: I checked and noted that Floam is made in the USA and that the sand in Moon Sand is made in Sweden while the assembly, etc. is done in China. Neither Floam or Moon Sand has been recalled.

I feel really blessed that I decided a long time ago not to buy Aqua Dots, the latest toy made in China to be recalled because of toxicity concerns. The name Aqua Dots could represent harmlessness for parents with access to safe drinking water supplies. Aqua means water after all.

Aqua Dots are beads used in arts and crafts products. The beads fuse together when squirted with water. They come in many colors which makes them attractive to children. The toy has been getting good reviews up until now (11-08-07).

Aqua Dots may still be attractive to children. However, they are quickly becoming unattractive to adults concerned about child safety. The big news story is that Aqua Dots is extremely toxic when ingested. According to various news reports on the web, scientists have discovered the toy contains a chemical that converts into a powerful date rape drug (gamma hydroxyl buryrate) during the digestion process. Reactions to this drug include vomiting, unconsciousness, coma and death.

Two children in the U.S. and a few others in Australia fell into unresponsive comas after swallowing Aqua dots or Bindeez, as they are called in Australia. The range of the children’s ages (from two to ten) suggests that the temptation to swallow is great for all ages.

I have two children who occasionally put toys in their mouths. My youngest is four and loves candy—which Aqua Dots seems to resemble. My nine-year-old with autism would know the dots are not candy. However, sometimes he copies his younger brother while playing (which is a blessing most of the time). My nine-year-old also tends to chew on his clothes and occasionally mouths inedible objects.

Why did I make the decision not to buy Aqua Dots? It wasn’t because I was concerned about the possibility of my boys swallowing the beads. It was because when I first saw the commercial for Aqua Dots, the product reminded me of Moon Sand and Floam, two relatively new products marketed towards kids that I found to be disappointing at best.

“It doesn’t work,” said my nine-year-old neighbor boy when referring to Floam this summer. My two boys and I also had similar failing results with the product. Some of it ended up embedded in our carpeting. It’s very difficult to shape Floam into art projects when the stuff sticks to one’s fingers and everything else.

We fared a little better with Moon Sand, but it didn’t shape into the molds as it seemed to on the commercials designed to sell the product. We found Moon Sand to be too crumbly. I figured Aqua Dots would be a failure in our house even though it was getting good reviews. Why spend money on a toy which will end up sucked up in my vacuum cleaner or wiped away during clean-up?

I had been a sucker for the prior two products because I like to provide my sons with toys that provide both sensory integration and a chance to develop fine motor skills and creativity. I could have provided the same type of opportunities by buying Aqua Dots, but did not for reasons I already explained. Thank goodness Floam and Moon Sand were flops in our home.

Update: I am going to pass on this one, but I found a recipe for those of you who may still want Moon Sand without the cost and worries of any possible toxicity.

Wednesday, November 7, 2007

The Boy Who Reads Road Signs

My nine-year-old son (who has autism) could acknowledge certain signs well before he could actually read. At the age of two, like many toddlers, he used to make protesting sounds when passing the Golden Arches. At the age of three my husband and I were becoming alarmed that his language skills weren't as developed as they should be for that age and we (or at least I) did not recognize the signs of autism.

However, my son could say a few words. Some of those words were related to road signs. "Burger King" was a favorite phrase back then. My husband and I remember a time when my son shouted "Burger King!" in his sleep while we were on vacation. What can I say? My son loves fast foods and the toys that comes in the kid meals.

Anyway, other recognized road signs by age five were for Meijer, K-mart, and Bob Evans. At ages seven and eight my boy would greet me at the door upon my return from various shopping trips. He'd always look at my bags and know exactly where I had been because stores usually print their logos on the shopping bags.

At age nine my son is a pretty good reader and he reads signs wherever we go. If we are in the car, he'll read road
signs. Or, if we are in a building, he'll read the signs posted in the building. This means I don't have to worry about him going into the women's restroom instead of the men's. He also knows where all the exits and emergency exits are in the local businesses we patronize. Needless to say, my son has an excellent sense of direction. He always seems to know where he is and often uses signs to help him further develop his sense of direction.

As for me, I pride myself on not getting lost and being able to follow (location) directions. However, occasionally I'll make a wrong turn or miss an exit on the expressway. If my son is with me, he'll often notices my mistake before I do. Yesterday, he helped me avoid making what could have been a mildly embarrassing mistake.

We had just dropped my youngest boy off at his music class for preschoolers and had about twenty minutes to fill. My oldest son knew it was election day because he had the day off so that voters could come to his school to vote without being disruptive (and a potential security threat as well). As a result of his knowledge, he indicated that he wanted to accompany me to the polls. So that is why I decided to use the music class time to vote instead of waiting for my husband to come home at five.

When we arrived at the school my son immediately zoned in on the black and white "Vote Here" signs. He, not I, noticed that the signs had a hand with a finger pointing in the correct direction. I thought I knew where to go because I have been in the area for five years and had voted at the school many times. So, I started toward the gymnasium where the polling has always occurred in the past and didn't pay attention to the signs.

I started to head for the gym when my son said exclaimed "They are voting in cafeteria!" The gym is in the opposite direction and (with a lot of things of my mind that day) I probably would not have realized my mistake until I saw the big empty room--or worse. I could have had my mistake corrected by a teacher or staff member at the school for their inservice day before I even reached the gym. Instead, my son, the one who has autism, efficiently made sure I went to the right place.

Tuesday, November 6, 2007

A View of the Thimerosal Debate From Four Angles

This is my last post on Thimerosal for awhile. The goal today is to briefly view the issue from four different angles and to try to figure out why President Bush is against the ban of thimersol in the FY 2008 bill.

The first angle is the most obvious one. There are parents, scientists and other advocates who believe that the mercury in thimerosal, a preservative used in vaccinations, are to blame for the apparent rise of autism. In June, a group of parents testified to Congress that they saw a direct link between the vaccinations and their children's autism.

The second angle is the opposite of the first. There are people who think the notion of mercury causing autism is silly. One such person is a close friend of mine who is a parent of a child with autism. Another person against the idea is an anonymous blogger who has taken the pseudonym NM or Not Mercury. A year ago NM wrote, "It's Over. The thimerosal hypothesis was examined and rejected by the majority of researchers many times and many years ago but it's still managed to hang on for a few more years, supported by a small group of parents and fringe scientists." NM does provide research to support this claim, but some of it is hard to follow. Further, other people falling into this category are people who are in the business of putting mercury into vaccines are also (obviously) in this group. It would be unprofitable for the latter to think otherwise.

The media, in part, also seems to fall into the second category. Apparently some major reporters on television (I do not watch the evening news as I generally keep up with the news by reading) have reported that thimerosal is safe to use and that the mercury in it is not linked to autism. To see criticism of various television reports supporting the view that thimerosal is harmless see the Counterpunch website. In an article titled "Same Old Story, Same Old Song and Dance: The CDC, Vaccines and Autism", Ann Dachel has taken issue the major networks.

The third angle is from the rest of us who are concerned, but who also believe there is a lack of proof in terms of thimerosal being directly related to autism. This is generally the view that I've seen some doctors and educators take. Further there are two subgroups within this group.

The first subgroup may want to wait for further proof before taking action to remove the debated substance from vaccines. The second subgroup (to which I belong) may think that if there is a possibility that thimerosal causes harm and that there are plenty safer, lowcost alternatives to preserving vaccines then why take a risk? I say use the safer methods and then take long-term notes to see wheter the rates of autism increase or decrease. I also support of doing a large-scale study of vaccinated populations of children versus unvaccinated ones. However, there is a voice in my head that that believes that there is no real answer to this debate right now.

Finally, there is the fourth angle, the view of the Chief Executive Officer of the United States. He has to look at all these viewpoints of a debate in which evidence does not seem to support either side (the two sides covered in the first two angles). When you look at the two sides, you take a group of parents and pit them against media who influences a great deal of the population. Whose view would sway you if you were president? But perhaps, more importantly, whose view would sway you if you were a justice in the Court of Appeals or the U.S. Supreme Court? President Bush may be thinking (yes, he can think at times) about the possible lawsuit that companies who produce thimerosal may put into action if mercury is banned from vaccines. This company may have a case if there is not sufficient proof that thimerosal causes harm. As to what is sufficient proof--that is up to the justices and also the support of the media.

This latter view is just me trying to think like a CEO. I don't know for sure what President Bush is thinking--and right now I definitely do not have the proof. I'm guessing that the reason President Bush is planning to veto the ban on thimerosal is because he is trying to avoid potential lawsuit brought forth by companies manufacturing the substance.

In the meantime, I am in the difficult position of having to decide what to do now that flu season is approaching. Should I have my child with autism vaccinated to prevent the flu virus from potentially causing damage to my son's already single damaged kidney? Or should I try to protect his brain from something that is not proven to do damage by not getting vaccinated for the flu? Using this logic I might end up getting him vaccinated.

Where do you stand in the debate of thimerosal? Please comment.

Monday, November 5, 2007

President Bush and His Opposition to a Thimerosal Ban

Yesterday I wrote that the reason why President Bush is vetoing the FY 2008 Bill is because he wants the ban on thimerosal removed from the bill. This concerns the ASA, some scientists, parents and many others because the mercury in thimerosal is believed to be a trigger of autism. Near the end of my post I asked what the safer alternatives to thimerosal were in regards to preserving vaccines. My thanks goes out to the two readers who addressed my question. Please see their comments to my previous post if you would like to know what they wrote.

I once read somewhere that a possible reason as to why President Bush is against the ban is because his father, Past U.S. President H.W. Bush, may have a business connection to the company that manufactures thimerosal . However, I was unsuccessful in my search to find a website to back this claim up. I'm not about spreading false rumors about our U.S. President nor am I into bashing President Bush. But, if anyone can find a credible website discussing this claim, I might write about it in a future post. Thank you for your interest in this topic.

Sunday, November 4, 2007

President Bush vetoing FY 2008 Funding Bill Because Mercury Ban is Included

Yesterday I wrote that I would do a little digging to find out why President Bush is vetoing the FY 2008 Funding Bill. The following excerpt from the site Infowars explains the pending veto. Now I know why the Autism Society of America is concerned.

Steve Watson, from Infowars, writes:

"President Bush is to veto a bill that would ban mercury in flu vaccines for children despite its known links to autism and other neurological disorders and despite the fact that he pledged in 2004 to support such a move when campaigning for re-election.

The White House stated on Tuesday that President Bush would veto the FY 2008 HHS-Labor-Education Appropriations Bill because of the cost and "objectionable provisions" such as a measure to ban the use of childhood flu vaccines that contain thimerosal, a mercury-based preservative, a press release from Autism advocacy group Safe Minds states. Bush is calling for an amendment that would remove the children's safety provision from the bill."

Many parents who have children with autism believe that their child's condition is directly linked to the mercury-containing preservative thimerosal which is added to vaccines to prevent contamination. Watson also reports that the Institute of Medicine recommended against exposing pregnant women and children to thimerosal in 2001.
Thimerosal is added to flu shots and other vaccinations recommended for pregnant women and children.

From the FDA:

"Thimerosal is a mercury-containing organic compound (an organomercurial). Since the 1930s, it has been widely used as a preservative in a number of biological and drug products, including many vaccines, to help prevent potentially life threatening contamination with harmful microbes. Over the past several years, because of an increasing awareness of the theoretical potential for neurotoxicity of even low levels of organomercurials and because of the increased number of thimerosal containing vaccines that had been added to the infant immunization schedule, concerns about the use of thimerosal in vaccines and other products have been raised. Indeed, because of these concerns, the Food and Drug Administration has worked with, and continues to work with, vaccine manufacturers to reduce or eliminate thimerosal from vaccines."

I am not sure where I stand on this issue, although I have friends with children who have ASD who are opposed to the use of thimerosal in vaccines. Also, my son has a medical condition other than autism which inspires his specialists to suggest he get a flu vaccine. So, I do have an interest in this issue. I have heard there are safer alternatives to using thimerosal, but I have not heard what those alternatives are. If anyone out there does, please tell me by commenting on this post.

Saturday, November 3, 2007

President Bush, ASA, and the FY 2008 Funding Bill

The American Autism Society of America is requesting that its members contact their U.S. Representatives and Senators to ask that their legislators support the FY 2008 funding bill. It is sponsored by the joint House/Senate Labor, Health and Human Services and Education Appropriations Conference Committee.

This legislation includes significant increases for autism related programs at the National Institutes of Health, the Health Resources and Services Administration and the Centers for Disease Control and Prevention (CDC). ASA is asking for grassroots support because President Bush is vowing to veto the bill.

A quote from ASA: "This veto threatens much needed increases for autism early intervention, diagnosis, treatment and research. We must work to get a veto-proof majority for this conference report in both the House and the Senate."

I will have to research reasons why President Bush plans to veto this bill before I take action. I'll post the results of my research tomorrow. In the meantime, to find the contact information for U.S. Congress members from Michigan as well as senators and legislators from other states, please see The Online Directory for the 110th Congress.

Friday, November 2, 2007

Differentiating Between Asperger's Syndrome and Autism

I always thought the major difference between Asperger's Syndrome and Autism was that people with Asperger's Syndrome always had a good grasp of speech while people with autism had impairments in speech ranging from mild to severe (with some having no speech at all.) I also thought that people with Asperger's were all quite bright while a few people with autism (but not Asperger's) had mental retardation.

Well, it looks like I may have been wrong. Today I had the opportunity to attend a free, yes free, conference in Park Library's Auditorium at Central Michigan University. The sole speaker was Dr. Luke Tsai, a specialist from Ann Arbor who also has a son with autism. He spoke for three hours to a full house (approximately 180 people.)

Dr. Tsai asserted that some people with Asperger's Syndrome have had a history of speech problems and that some people diagnosed with the disorder do have mental retardation. Here are some of the key characteristics of Asperger's Syndrome he listed: odd or intrusive social interactions, not having proper insight of one's own problem (it's always someone else's fault), aggressiveness, interest in sexual relationships (he said autistic generally do not have this interest), and insistence of sharing special knowledge of a favorite topic.

I'm not sure I entirely agree with Dr. Tsai's views on diagnosing autism and Asperger's syndrome. He didn't address sensory problems at all while explaining how autism and Asperger's Syndrome are diagnosed and he seemed to rely on I.Q. tests too much while sharing his ideas about Autism Spectrum Disorder (a term he said he doesn't like). I thought that sensory issues were one of the ways ASD was identified, so I was a bit baffled when Dr. Tsai did not address the topic.

Further, my own opinion is that I.Q. tests were not written for people with Autism Spectrum Disorder and therefore may not accurately assess the intelligence of those who have autism or Asperger's Syndrome. My own son has struggled with the test and has tested lower than his teachers, my husband and I thought he should because he has difficulty with fine motor skills. In today's presentation Dr. Tsai did not question the accuracy of I.Q. tests or the ability of the tests to accurately reflect the intelligence of someone with ASD. He merely quoted the stats of how many people with ASD have been diagnosed with lower I.Qs.

To his credit, Dr. Tsai does appear to have done his research. He recited the history of diagnosing autism (which seems consistent to what I have previously read) and acknowledged the difficulty the medical profession has had in recognizing Asperger's Syndrome. He presented a credible timeline and quoted Hans Asperger (the pediatrician who first described the syndrome in the 1940s) extensively.

In a paper titled Diagnostic Confusion in Asperger Disorder (which Dr. Tsai presented in a different time and place), he wrote about how some Asperger's patients had speech and cognitive problems. Dr. Tsai is an excellent writer and outstanding presenter and I do encourage those interested to read his paper.

However, I will admit that Dr. Tsai did little to clear up my confusion about the difference between the two disorders. Maybe, I'm confused because I don't agree with some of his views. I'm just not sure what to think. I do know that if my family visited Dr. Tsai instead of Dr. Solomon in Ann Arbor (at the University of Michigan), my son might have received the diagnoses of Asperger's Syndrome instead of the High Functioning Autism/PDD NOS diagnosis the latter doctor gave him.

Further, I have received contradictory opinions into what category my guy fits. My son's former teacher also attended the conference and as a result has concluded that he probably has Asperger's Syndrome. However, another friend of mine (who previously attended presentations by Dr. Tsai) has a son with Asperger's Syndrome once told me that my nine-year-old is too congenial to have that diagnoses. That friend thus concluded that my son has high functioning autism.

There is another category Dr. Tsai touched upon which my son my fit into. That is Pervasive Developmental Disorder Not Otherwise Specified (PDD/NOS). This is a tough category for someone to fall in, he said, because it is difficult to tailor an intervention program for a person who does not fit neatly into the other two categories.

However, my son is doing fine with the strategies we are using at home and the strategies his teachers, aides, and therapists use at school, so I am not concerned. Too keep from being confused, I guess, I'll just stick to my son's original (and official) diagnosis unless someone convinces me otherwise. When asked, I'll continue to say he has autism/PDD NOS.