Saturday, May 31, 2008

2008 Special Olympics Success!

We did it!! The Special Olympics State games here in Mt. Pleasant, MI were a success in my book. For his first race (above) my son stayed in his lane and finished the race with a big smile. There's my little athlete running his race while trying to keep his pants up. Everyone was cheering him on. He was last in his heat, but he received a bronze medal because there were only three runners. I am happy and relieved. We've come a long way since the season began in terms of sportsmanship and track skills (see links to previous posts for details). He also has a silver medal and a fourth place ribbon from the 2008 summer Olympics.

Thursday, May 29, 2008

The Possible Link of Autism to Other Neurological Disorders

Image: A simplistic picture of a complex organ where many clues to autism may be found.
Yesterday I suggested that Max Blake, the bipolar ten year old who appeared on the cover of the May 26 edition of Newsweek magazine may also have Asperger Syndrome. I also pointed out that is is not uncommon for children and adults with Autism Spectrum Disorder to also have one or more other neurological disorders like attention deficit hyperactivity disorder (ADHD).
In an online story in the Los Angeles Times titled "Brain's Role in Autism Probed," it was noted that a scientist studying the brains of autistic children found an overlapping region of the brain linked to various disorders. The study in question was conducted by Keith Shafritz, an assistant professor of psychology at Hofstra University on Long Island.

For his study, the professor compared the brain images of autistic youth with those of neurologically typical children. The researcher was able to pinpoint regions in the brain that are linked to "ritualistic repetitive behavior" in autistic children. While Shrafriz was noted as saying that the brain areas associated with repetitious behavior were not associated with another autism problem, self-injury, he did find a relationship supports my observations that children on the spectrum may have other disorders as well. Here is the excerpt that supports my claim:

"[...]Shafritz found a relationship between the newly identified brain areas and overlapping regions linked to schizophrenia, obsessive compulsive disorder and attention-deficit hyperactivity disorder.

Dr. Anil K. Malhotra, director of psychiatric research at Zucker Hillside Hospital in Glen Oaks, N.Y., said he was not surprised. He too is studying links between autism and schizophrenia, and autism and obsessive-compulsive disorder."

Tuesday, May 27, 2008

Does Bipolar Boy on Newsweek Cover also have Asperger's Syndrome?

I cut and pasted the excerpt below from the cover story for the May 26 edition Newsweek magazine. In case you haven't seen it, the title of the article is "Growing up Bipolar: Max's World." Does anyone else think this boy might have Asperger's Syndrome (AS)? I put some of the sentences that made me think of the possibility in italics. The sensory problems and rigid play were red flags to me.

Excerpt: "After a year, the jokes gave way to worry. Max was reaching and surpassing his milestones, walking by 10 months and talking in sentences by age 1, but he wasn't like the babies in parenting books. Richie carried his son to the backyard and tried to put him down, but Max shrank back in his father's arms; he hated the feel of the grass beneath his small bare feet. Amy gave Max a bath and turned on the exhaust fan; he put his hands over his ears and screamed. At 13 months, he lined up dozens of Hot Wheels in the same direction, and when Amy nudged one out of order, he shrieked "like you'd just cut his arm off." At day care, he terrorized his teachers and playmates. He wasn't the biggest kid in the class, but he attacked without provocation or warning, biting hard enough to leave teeth marks. Every day, he hit and kicked and spat. Worries became guilt. Amy had been overweight and dehydrated in pregnancy. Was Max so explosive because she had done something wrong?"

My thoughts: His mom joked in the article that if a condition has a letter in it, then Max has the condition. She was thinking more along the lines of ADHD, etc. However, I don't think she was thinking of ASD, though many times people with Asperger's syndrome or autism also have been diagnosed with ADHD or Bipolar disorder as well. Near the end of the article the mom mentioned she was glad Max did not have autism like other children in his school because they couldn't tell their moms they loved them nor could they hug them.

What this mom needs to know is that she is defining autism by referencing stereotypical behavior. While it is true that some children cannot exhibit affection in either way she described, some children on the spectrum are able to exhibit affection. For example, my child who has either a milder form of autism or AS does say "I love you" occasionally. Usually he is responding to my three little words, but on rare occasions he does volunteer those words without anyone saying them first.

I imagine that Max's mom is getting bombarded with opinions and suggestions at the moment. I'm sure many others have suggested that her son has ASD. Whether he'll eventually be diagnosed is unclear.

Monday, May 26, 2008

A Memorial Day Tradition

Image: A statue honoring veterans at Island Park in Mt. Pleasant, MI.

My oldest son's words today was "good morning dad. Happy Memorial Day." Both of my boys and their thirteen-year-old overnight guest are looking forward to the parade today. What did my two boys put on? Red, white and blue! They did this on their own accord.

Anyway, I think the procession will end at the memorial pictured above, unlike other years where the parade ended in the town square where there is another veteran's memorial. When we first moved here five years ago we were surprised to see that there were similar memorials all over town. I haven't seen another city so dedicated to honoring veterans.

It seems fitting then that our family started the tradition of attending the parade in this city. The boys have started to look forward to it. I just hope then, that we don't get into trouble with my son who has ASD if we can't make it to the parade one year. I guess that is what social stories are for! Otherwise I am happy with this tradition. Traditions like attending annual parades provide great opportunities for a family to bond. I hope everyone has a great day!

Sunday, May 25, 2008

A Sunny Holiday Weekend

Above: An image from a free printable coloring website site.

We are having perfect weather here in Mid-Michigan this weekend, especially for a holiday weekend. I don't imagine my two boys will actually do much coloring today as it is supposed to be sunny and in the 70s!

My child with autism will probably ride his scooter a lot today. It's one of his favorite outdoor activities. He also enjoys playing with the neighbor kids. Some of them are three years younger or more (his brother is 4.5 years younger and is a great outdoor playmate as well), so it works out well developmentally. He has a few problems from time to time, but most every youngster has a spat with their friends from occasionally.

My husband is mostly an indoor type. He's a librarian!! He'll probably watch some television, keep his ear out for anything going on with our boys outside, and play some computer games. He's probably glad the family outing for today is going to be indoors. We're going bowling with another family. To be fair, he has light skin that burns easily.

As for me, I plan to go on a couple of walks today. Maybe I'll work in the yard some. It's too beautiful to be indoors for too long. The only reason I'm blogging now is because I'm still in my pajamas this morning!! As for this blog, I'm going to lighten up a bit for the summer: shorter posts, more happier posts (with some serious ones sprinkled in), and probably fewer posts. Today is the perfect time to start as Memorial Day unofficially kicks off the summer season here in the United States.

Thursday, May 22, 2008

Sportsmanship: Thomas the Train vs Lil' Critter

Pictures: First we have Thomas the Tank Engine and then we have Lil' Critter on the cover on one of the Mercer Meyer Books.

Sportsmanship: Lil' Critter versus Thomas the Train

Which character do you think would win in terms of Sportsmanship? Would it be Little Critter? Or would it be Thomas the Train?

Based on the book Just a Baseball Game, I'd say Little Critter. In that book, the first-time little leaguer's team plays The Dinosaurs, a team of players who are much bigger than Lil Critter and his friends. As a result The Dinosaurs run up the score. The team members of The Critters start to feel bad until their coach reminds them that they should just have fun. The message here is that playing is more important than winning. It's a lesson I'd wish my son would learn.

In contrast, my son would say Thomas the Train would win the ideal sportsmanship award. I am basing this on my son's quotes of a book from the Thomas the Tank Engine Franchise. This book is based on, but is not one of the books from Railway series by the Rev. W. Awdry. My son quotes directly from the book, Catch Me, Catch Me. This quote from Thomas the Tank Engine is the last line the book:

"I am first and you are last!"

It's my son's favorite quote to spout from the book. He'll say this before every race during Special Olympic track practice where he races teammates that are much bigger and stronger than he is. The guys he races also have more experience in track as my guy is the youngest on the team and a first-year team member.

Anyway, in Catch Me, Catch Me (a Pictureback Reader), Thomas races his much bigger friend Gordon. Gordon taunts Thomas, thinking he will win the race. However, Thomas wins by going through a tunnel that only little trains can fit into while Gordon has to climb and descend a huge mountain. (Isn't this cheating?) Anyway at the beginning of the book (before the tunnel comes into play) Gordon says:

"Slow Down. Go Slow." (In context, they have to slow down by going through a town.)

My son with autism also says (yells, actually):

"Slow Down. Go Slow!" (taking the words completely out context!)

Me: (sigh) "Be a good sport!! Don't yell at your team mates!"

One time he had a total meltdown during a practice and I had to drag him (56 lbs) from the track back to the van. Then I had to transport the screaming boy home. As of now I seem to be wasting words whenever I spout good sportsmanship reminders. They are ineffective. The words from the Thomas story are ingrained in his brain. Maybe, a good nonfictional social story will help my son be better at sportsmanship. Or maybe he just needs to mature a little. We shall see...

Wednesday, May 21, 2008

Learning Special Olympic Track Skills

This weeks Theme: Lorenzen Family Feat week. In other words, this week I'll be blogging about things I am working on in regards to my son's special needs. My guy has ASD and kidney ailments. Most of my posts this week will be related to autism. Tuesday's post relates to both of his conditions.

Run boy, Run!

Yeah, it's near the end of track season!! I ran track in junior high for two years and in high school for four, so I thought that getting my son through his first season of Special Olympics track would be easy. Instead I became his personal track aide because the ratio of coaches to athletes was way above the 1:4 ratio my son needs in most learning situations. At nine years of age, my son is the youngest and smallest athlete on the field. My little guy needs a lot more guidance than the older more experienced athletes who have been participating for years.

Here are ten things he needs or needed to know while participating in the 50 yd dash, the 100 yd dash and the softball throw:

1. That a lane means the space between two white lines.
2. That crossing a line means one will get disqualified.
3. What disqualified means!
4. What good sportsmanship means (for example, no yelling at the other athletes!).
5. To finish the race no matter how far behind one is.
6. That losing a race is OK. Participating is about having fun.
7. That second and third place finishers are also winners (and later he will learn that sometimes
awards are given up to sixth or even tenth place.)
8. When/where to stop running!
9. How to throw overhand instead of underhand.
10. How to step forward while throwing.

Wait I have one more!

11. What a coach is and how to listen to the coach instead of doing one's own thing like running by oneself around the track.

We have at two more practices (that last a very long one hour and 15 minutes) to go. The State Games for Michigan will be here in Mt. Pleasant Michigan from May 29-31. Wish us luck!!

Tuesday, May 20, 2008

Keeping a Medical Journal for Your Special Needs Child

This weeks Theme: Lorenzen Family Feat week. In other words, this week I'll be blogging about projects I am working on in response to my son's special needs. My guy has ASD and kidney ailments. Most of my posts this week will be related to autism. Tuesday's post relates to both of his conditions.

One of the first suggestions I'd make to parents of newly diagnosed children with special needs is to start keeping a medical journal right away. I'd also suggest this to parents who haven't started one yet. Keeping a medical journal for your child will allow you to track medication changes, doctor suggestions, key dates of diagnosis and other important information.

Keeping the journal in a notebook is the first of five recommendations that a nurse, Catherine makes in a post about keeping personal medical journals on her blog titled Be the Change You Want to See in Yourself. (Note to self: Print out post and paste it on the first page of the notebook.)

One of her commenters mentioned keeping an online blogging diary which is also good idea though I'd suggest keeping it private rather than public. On this blog, for example, I'd rather not mention some things because I'd prefer to respect my son's privacy.

Another idea is to check out this book by Sharon Larsen on Amazon. It is titled Your Child's Medical Journal: Keeping Track of Your Child's Personal Health History from Conception Through Adulthood. The drawback to this book is that it is expensive ($34.93)--especially for a paperback.

The upside is that the book allows you to record these details: Family medical history, Pregnancy record and calendar, Delivery and postnatal record, Routine doctor visits for preventative health care, short-term illness record, Complete medications record, Complete immunization record, Growth record and charts, Allergy record, Vision and hearing records, Injury, radiological, hospitalization, and surgical records, and Dental and orthodontic records. It looks like Larsen's journal helps one to keep track of everything that is important. I'd give it a try, if it weren't so pricey.

This Blogger's Confession: Today I'm blogging about the importance of keeping a personal medical diary for a child with special needs because I really need to start keeping a medical journal in a notebook! I have tried to keep word files on the computer, which worked for a little while until we bought a new computer and I forgot to back up the files. I lost four pages of doctor contacts and well as documentation of a few appointments this way.

I can recreate the doctor contact page by finding the information online and I do remember a lot of my son's past medical history. However, I am coming to understand the benefits of a notebook (if I don't misplace it.) In my own self defense, I do have key papers from doctor's offices in a filing system, so I'm not completely incompetent in this area.

Story behind this post: Yesterday we went to Grand Rapids again to see the pediatric nephrologist (kidney doctor). We have to visit his office every two to three months. Yesterday we were lucky to only have one appointment. Sometimes he has to have an ultrasound and visit his pediatric urologist too. I am usually exhausted at the end of days like those because I also have drive four hours (round trip) and shepherd my son through lunch and sometimes dinner if we have a lot of appointments.

Thankfully my young patient's appointment yesterday went well. His kidney condition has been stabilized. Since we only had one appointment we brought his little brother, who is five. This actually worked to my benefit. The patient actually allowed his blood to be drawn without me there to hold him still and calm him down!!

What helped? His little brother gave him one of his Ty Beanie baby kitties to hold during the blood draw. My little guy decided to do this as a result of the reminders I was giving his older brother on the two-hour drive to the appointment. It worked wonders!! Why didn't I think of that...

Afterward, my youngest son helped (without knowing it) by playing with his brother during the extra long wait in the doctor's office. The doctor was behind yesterday and it seemed to take forever before we saw him. Anyway, my little guy helped keep my oldest one from getting into too much trouble.

Ornery behavior like turning the lights on and off or getting into the drawers, etc. often occurs during appointments. These behaviors are often driven by anxiety and they drive me crazy! As long as we only have one appointment, I don't mind taking my other child. However, if a lot of testing and more than one appointment is to occur then I'd rather leave him home with a sitter.

Saturday, May 17, 2008

Five Favorite Things Meme

Well, I'll have to say that I'm ready for some fun. It's Saturday, a perfect day to do a tag since I'm between themes at the moment. Marla Baltes, tagged me with a Five Things Meme a couple of weeks ago. So here it goes in some of my favorite colors nontheless:

Five Things

Five things found in your bag:

1. Old receipts (always seem to have enough to make a pile).

2. Wallet (with photos of my guys and the usual necessary stuff).

3. Checkbook (unless my husband has it because we share this!)

4. Two shell casings from a Military Funeral salute that will go to my two sons when they are old enough to keep track of them.
5. Song sheet from funeral in question with these three hymns: Amazing Grace, In the Garden, How Great Thou Art.

Five favorite things in your room:

1. My Grandmas Quilt on my quilt rack.

2. My bed (with decorative wrought iron head and foot boards) bought with wedding gift money
almost thirteen years ago.

3. My dresser, chest and nightstand set, boughttwo years ago to match the bed.

4. A worn copy of Pride and Prejudice by Jane Austen.

5. My jeans, t-shirts, and Nikes! My "mom uniform" is often accessorized by a pony tail holder taken from a collection a bathroom drawer and a hoodie from the coat closet in our foyer.

Five things you have always wanted to do:

1. Write a book.

2. Visit somewhere outside of the continental United States like Ireland!

3. See the following U.S. Landmarks: Mt. Rushmore, Yellowstone National Park, The Mall in Washington D.C., New York City including Statue of Liberty and Empire State Building, and Isle Royale National Park (in Michigan.)

4. Go on a long distance super hike.

5. Move back to Ohio to be closer to family, but that is out of the question for now. : (

Five things you are currently into:

1. Blogging, of course!

2. Volunteering for an Arts Camp, Central Michigan ASA, and my sons' schools.

3. The TV Show Lost and these new summer movies: Indiana Jones and the Kingdom of the Crystal Skull, The Chronicles of Narnia: Prince Caspian, and the latest M. (Manoj) Night Shyamalan film, The Happening.

4. Enjoying the beautiful Spring Weather by hiking and going to parks!!

5. Losing the ten pounds I gained this winter. Have five more to go!

Five people you’d like to tag:
This one was quite difficult for me because my community of bloggers is tiny (but treasured). So I'm extending myself here. Maybe my blogging world will expand a little as a result. Some of these bloggers may be vaguely familiar with my blog, but others do not know who I am!! So this will come as a complete surprise. Some bloggers here are fairly new, so maybe your blogging world will expand a little too. Smiles--jml.

1. Sarah's Take Five

2. Sibling Center

3. My Homeschooling Autism

4. The Stimming Spot: Family Life with Autism and Asperger's

5. My Two Boys

Friday, May 16, 2008

Mother's Week: Estee Klar,Wolfond, The Autism Acceptance Project

This weeks theme: Mother's who created foundations or opportunities for their children and other people. Today's post will be the last of this series. I realize I may have missed some moms who have made wonderful contributions to the autism community. Perhaps I will cover them in the future.

Today I am featuring Estee Lar-Wolfond, the mother of a young son with autism, a blogger, and the founder of The Autism Acceptance Project (TAAP). According to its website the TAAP "works to promote acceptance of and accommodations for autistic people in society."

Further the TAAP asks this question:

"What kind of help do autistics need in order to succeed and contribute to society as autistic people?"

A chief interest of the TAAP is to use science to investigate and debate the beliefs and educational needs of individuals with autism. I'd recommend checking out the website because it has good content and what looks like a wonderful art gallery of work done by people with autism.
Ms. Klar-Wolfond also has a blog called The Joy of Autism where she provides updates about the TAAP, voices opinions about current topics, and shares recent happenings in her life. Here is an recent update on the TAAP:

"[...]any of you may not know that The Autism Acceptance Project (TAAProject) sends out monthly newsletters and regular Newsflashes. Our e-mailing list is growing quite a lot and there's a lot of information in those newsletters that may not be in the blog or on the TAAProject website ( If you are interested in receiving newsletters, please email me, being specific in the subject line (RE: NEWSLETTER) and we will put you on the list ("

My thoughts: I'd like to point out that while I too like to celebrate the contributions and the diversity that people with autism make to society, Ms. Klar-Wolfond has much stronger opinions about various topics such as vaccines, biomedical treatments and media coverage than I do. I'm more objective and less likely to put myself solidly in one of the divisions that seem to exist in the autism community.

Ms. Klar Wolfond, however, seems very pro neurodiversity. She states on her blog that she does not see autism as a tragic epidemic (nor necessarily do I) and that does not want to see "a cure" for autism. As for me, I am open to biomedical treatments if they are not dangerous (a concern I share with today's featured mom) and lessen any physical or social discomfort an individual with autism might have. If, in the future, a doctor finds a safe biomedical treatment for autism that will vastly improve the quality of life for an individual, than I would be for it.

That said I admire this mother's determination to monitor media coverage and take on any media source (ie CNN) or organization (Autism Speaks) with whom she does not agree. She roars like a lioness while I am more likely meow like a domestic feline.

It had been awhile since I had visited the Joy of Autism so I was shocked to learn that the blogger recently underwent two surgeries for "borderline ovarian cancer." It seems so many of us blogger autism moms have faced challenges that are outside the realm of autism lately. She has reasons to always remember 2008 (her illness) as do I (mourning the loss of three people very dear to me). I wish her the best.

Wednesday, May 14, 2008

Mother's Week: Vivien Cooper, Founder of the Challenging Behavior Foundation

Theme for this week: Mother's who created foundations or opportunities for their children

I first came across the website for the Challenging Behavior Foundation while reading the wonderful blog titled Mother of Shrek by the blogger many of us in the autism blogger community know as Casdok. I explored the website of the CBF a little and discovered that it was founded by a mother who currently is serving as the chair of trustees for the organization.

The mother, Vivien Cooper, founded the Challenging Behavior Foundation in 1997. Her son has Cri du Chat (Cry of the Cat) syndrome, (which is as I understand not associated with autism) and has exhibited challenging behaviors such as head banging and tipping over tables, etc.

The foundation describes challenging behavior as actions displayed by children and adults with severe learning disabilities that may put the individual or others at risk. The behaviors include actions that are aggressive, self injurious, disruptive or destructive. Further, such behaviors make the use of ordinary community facilities or home life difficult. The difficulty lies in the respective individual's difficulty in controlling their actions, not to mention the inability to understand the consequences of their behaviors. The CBF attributes challenging behaviors to the individual's general inability to communicate.

When Mrs. Cooper's son was first diagnosed she was given a "half sheet of paper," and was to say the least, underwhelmed by the amount of helpful information available to her. She was also dismayed about the lack of opportunities for individuals like her son and sad that the only school that was willing to meet his needs was located more than 200 miles from her home. This meant that she had to make a 500 mile round trip in order to visit her son. As a result of both issues, Mrs. Cooper saw a need and set out to meet it.

In her own words:

"I started the CBF to try and ensure that the information available about understanding and managing challenging behaviour gets to those who need it, those who are encountering it every day. I am also determined that children or adults with challenging behaviour should not be transported hundreds of miles away from their home and families to have their complex needs met.

The message I would like to give to other families is that you should not be made to feel guilty because your son or daughter is the most difficult to manage, or most expensive to fund. You are not alone, and the Challenging Behaviour Foundation is here to support you."

Here are few additional words that Ms. Casdok provided at my request:

"I’ve been a member of the Challenging Behaviour Foundation for many years. Having a child with autism is one thing, having a child with autism and severe, challenging behaviour is another.
Like Vivian I found nowhere locally could cope with my son so I had to send him hundreds of miles away to school. As a parent this is very isolating as you don’t get to meet other parents from the school. So I have found the foundation an invaluable source of support and knowledge.

At present we are putting together some packages to help younger parents to help their children. It is very exciting to be part of this." (Thanks Ms. Casdok!)

My thoughts: I have great respect for both Vivien Cooper and Ms. Casdok for helping other people while also working to help their own sons. I've read through some of the messages posted on the CBF site and saw that parents of those exhibiting challenging behaviors were most appreciative of the CBF's efforts.

Most people posting on the site seemed to be family members who found the information provided to be useful. It's also important to note that these messages did not originate just from England where these two moms are from, but from all over the world. I believe I saw at least two messages coming from the United States. Thanks to Vivien Cooper, Ms. Casdok and the active members of the CBF, the informational needs of these families are being met.

Monday, May 12, 2008

Mother's Week: Jennifer Hoppe

Theme: Outstanding Autism Mother's Week. This week I am profiling amazing and inspiring moms who helped to make things happen for their children with autism.

Today's focus is on Jen Hoppe. This mom appeared on an ABC Nightline News program in 2005 with her then 21-year-old daughter Jaime Hoppe (along with some other adults). The title of the program was "A Place in the World." The focus was adults with autism. Jaime was featured singing the song, "Wind Beneath My Wings." I couldn't help but wonder if Jaime wasn't thinking about her mom and dad when singing this inspiring song.

I was impressed with Mrs. Hoppe and how she talked about creating opportunities for her daughter that previously did not exist. Her daughter was born in 1984 when there wasn't a lot of programs for and information about individuals with autism. I found Mrs. Hoppe to be a positive, proactive individual. I was amazed at how well she comforted her daughter-in-law who had just received an autism diagnosis for her son, then a toddler. Here is a cut and paste from the show's transcript of what she said to her grandson's mom:

"It's going to be okay, honey, it's going to be okay. You're doing everything you can. He's doing well, right? He's doing good. He's going to be fine. He's a baby. I didn't have this chance, okay?Look at how good she is with the chance I didn't have. Can you imagine? It's going to be fine. Got good genes."

One of the opportunities Mrs. Hoppe helped to create (along with her husband, Jim and two other couples) was the Quest Autism Foundation which operates out of the Wyckoff, New Jersey YMCA. The Quest Autism Foundation (QAF) is a private non-profit 501(c)(3) organization that assists and supports adolescents and adults with autism by:

"P R O V I D I N G

excellence in vocational, and recreational services.


with a broad spectrum of community sites.


individuals with autism to lead more productive and independent lives.


recreational and leisure programs for all.


to the national dialogue to address the severe shortage of adult services."

My thoughts: One of the biggest needs in the autism community is opportunities for adults with autism. There aren't many. The QAF is hoping that their program will be emulated in other YMCAs. If you are interested in this topic, I'd highly recommend checking out their site by clicking on the link provided above.

Sunday, May 11, 2008

Mother's Week: Elaine Hall

Before autism awareness month in April had begun, I had started to work on weekly themes. For April, I covered most of the events my group, Central Michigan Autism Society of America, hosted here in Mt. Pleasant.

So now that life is sort of back to normal, I will go back to my themes. Yesterday was Mother's Day here in the United States, so this week I will focus my posts on mothers who have made a difference in the realm of autism. Over the past two months I've learned about women who created a way to fulfil unmet needs for their children with autism and others like them. These moms are truly inspiring and amazing.

Today's post will be about Elaine Hall from The Miracle Project. Those of you who watched or read about Autism: The Musical may be familiar with her name. She is "Coach E," mother of one of the stars, Neal. She is the woman who pulled everyone together to put on the show featured in the HBO documentary that debuted March 25. HBO has some nice pages dedicated to Neal and Elaine as well as the other families of the four other young stars of the HBO film. There are some nice pictures of Neal and Elaine on their page. There are also updates on Neal and some nice quotes from Elaine.

From the HBO site:

"Elaine Hall - "Coach E," the founder of The Miracle Project, is an educator, writer, consultant, performer and professional acting coach for TV and film who has written and directed more than 30 children's plays. She is the mother of Neal, who was diagnosed as autistic after adoption. When traditional therapies did not help Neal, Hall sought out creative people (actors, writers and musicians) to work with her son, developing new methods to reach autistic children, which resulted in The Miracle Project."

Featured quotes from Elaine:

"The play at the end is really not the most important thing. The 18-20 weeks prior to the play, before we even get on the stage, are really the heart and the soul of the program. We literally have kids who start out hiding under tables, can't come into the room, it's too loud, they've never been in a social situation before. Their parents say, "I don't know if this is gonna work. They've never been socialized."

For the families, it's a community where it's not about therapy. It's the one place during the week where it's not about "What's wrong with my child and what goals do I need to set?" For the kids, it's a place where they come in and they're immediately loved and accepted and part of a community and missed. A lot of our kids -- you're not really missed because they kind of cause a ruckus out in the world. But here, if someone doesn't show up, they're really missed and everyone calls and wants to know where they are. It's like 'Cheers' -- it's a place where everyone knows your name."

Saturday, May 10, 2008

Creative Corner Saturday: Imagifriends by D.J. Svoboda

For Creative Corner Saturdays I am hoping to go beyond my own family and feature the artwork and poems of individuals with ASD or their family members. Today I am featuring artwork that should make everyone smile. The colorful, quirky Imagifriends are from Imagiville where everyone is nice to each other.

The creator of Imagifriends is D.J. Dvoboda, a 24-year-old man with autism. The artists sells mugs, mouse pads, canvas bags and a fifteen-page coloring book. He also is hoping to create signs or murals with names (as seen above), for individuals and businesses.

From the artist:

"My name is D.J. Svoboda. I am the creator of the Imagifriends of Imagiville. The Imagifriends of Imagiville are based on the experiences I have faced during times at school. There were days at school when I was made fun of, and when I was picked on and treated mean. Those made me feel very sad and hurt. That is how I got the idea of the Imagfriends of Imagiville...D.J."

My thoughts: The artist also has free coloring pages on his site that can be printed out at home. He encourages children to write stories about his characters. I am thinking about sending the website address for Imagifriends to the director of my son's summer arts camp. I can see the campers there coloring his pictures and maybe even writing stories about them.

I can also see parents who of home school their children, particularly children with special needs, using D.J.'s artwork in their curriculum. I love that the artist was inspired by his not-so-great social experiences to create something so positive.

Thursday, May 8, 2008

And Life Goes On

We are back in Mt. Pleasant now after being in Northwest Ohio for the last six days. My nine-year-old son with ASD went back to school today and my husband went back for a half-day of work at Central Michigan University where they are between Spring and Summer sessions.

My son has two back-to-back activities after school today. He has Special Olympic track practice from 4:15 to 5:30 and will ride a horse in his Proud Equestrian Program (PEP) beginning at 6:45. Thankfully Thursdays is the only day with two activities.

It might be difficult for my guy to get through both activities tonight because we arrived at home around 10 p.m. last night. My child will be exhausted. My big concern is how school will go tomorrow. It's hard enough for a neuro-typical person to control behavior when exhausted. Hopefully my young son with ASD will be able to manage.

As tiring as those activities seem, going back today is a necessity. There's something comfortable about returning to one's routine. Our hope is that our life will be somewhat 'normal' for awhile. I am hoping to get back to weekly themes here at this blog soon. I keep thinking that will happen and then something comes up. Hopefully, I'll get rolling with a theme on Monday.

As for me personally, I'm tired with an unshakable headache. I'm slowly unpacking and cleaning up the house as I keep an eye on my five year old son who has been watching way too much television today.

However, I'm fortunate to have caring friends and family. We've received several cards and emails expressing sympathy for the loss of my dad. I've appreciated all the support. This coming year won't be easy, but I'll manage. Take Care--jml.

Tuesday, May 6, 2008

An Unexpected Loss

This is the hardest post I've had to write since beginning this blog a little over six months ago. I cannot describe how difficult this last week has been. Nor can I adequately assign words to describe the wonderful person surrounding the drama that started last Thursday night.

You see, I unexpectedly lost my beloved eighty-year-old dad (whose home in Ohio is three and a half hours away from mine) last Friday. He had been working in his garage with a grinder Thursday evening when a piece suddenly broke off and cut his lip. He had been on blood thinner medication since having a heart valve replacement several years ago. My dad knew his wife didn't want him working with such tools because she knew if he cut himself it could be problematic. So he tried to sneak in a job while she wasn't home.

Unfortunately no one was with him when he became dizzy from the resulting massive blood loss. He fell head first onto the cement garage floor. Somehow he made it into his house and onto a chair. That's where my step mom found him unconscious. He was life flighted to a hospital in Toledo. A cat scan revealed that he had severe head trauma and that he'd never recover from his injuries.

His living will indicated that we needed to let him go, so we did. My step mom, her children, myself, and my three siblings made that necessary decision to take him off life support.

One could tell how many loved the handsome man with the beautiful white hair and sparkling blue eyes because so many were gathered in his palliative care room. So many, including myself were touching his hand or some part of him when his heart stopped beating. So many filled the funeral home for visitation hours today. I'm expecting the funeral home to be packed tomorrow morning and can imagine that every chair will be filled with a few people left standing in the back of the room.

There are three large picture boards and one slide show filled with photos of my father. There were so many pictures of my dad that we could have wall papered the walls of the funeral home. He attended every graduation, wedding, and anniversary party he was invited to. He went to family reunions and visited all relatives and friends regularly. He wore silly hats when given one, held babies with great pleasure, cut his friends hair, traveled with his fifth-wheel trailer and was known to fall asleep whenever sitting down in a comfortable chair.

I'll always remember him as a great dad who made sure I had a bicycles, braces, a college education, a beautiful wedding and even a down payment on my first home. He took great pride in being a great provider. It meant a lot to him to be able to provide for his two wives and his four birth children. It meant a lot to him to be there for his second wife and her large family and that they were there for him.

He loved both of my sons and it didn't matter to him that one of them was a little different than most children. In fact, I had just talked to him on the phone and told him that my guy with ASD would be riding horses in the Proud Equestrian Program again and also told my dad that my oldest child reminded me of him in terms of always wanting to be visiting friends and family. I also was careful and added that I didn't know where the autism part came from. I told him that I thought my guy with autism would be Ok and that he was doing really well.

It must of meant something to him to hear all that because my brother said that he talked about my son a lot on his last day. My brother was fortunate to spend several hours with him on that Thursday before his accident. I was fortunate to hear that my dad talked about my son with pride on that day. I'll always have that comfort and it means so much.

My dad demonstrated to everyone what it took to be a great person. My favorite picture of his is one that depicts him walking along with a little step-granddaughter, age three, following along behind. To me it showed that he was a guy to look up to. He was a great man and I am heart broken.