Monday, March 31, 2008

Update: Student Council for Exceptional Children

Theme for the Month: Autism awareness

On Friday, the first autism awareness event was held on Central Michigan University's campus. I am proud to report that Family Fun Night was a big success. It was a conjoined effort by my group, the pending chapter of the Central Michigan Autism Society of America and the Student Council for Exceptional Children (SCEC).

The SCEC is a group of college students who will most likely work with special needs children in the future. It is likely that most of its members are special education or speech therapy/audiology students, but I am aware of some members that are majoring in regular or early education. Thank you SCEC. You are a wonderful group!

Back in November I wrote about a post about a Family Fun night that was hosted by the SCEC for families who have children with autism. I lamented that it was attended by only three families, but I was unaware that a limited number of families were invited in order to control the test run. That Friday evening in November was the first time that SCEC attempted to host such an event. Despite a "low" turnout, the evening was successful and everyone had fun.

Last Friday night, SCEC, hosted our families again for another fun and successful evening. This time invitations were given out freely with RSVPS requested. Fourteen children in eight families showed up and everyone seemed to have a good time.

The President and Vice President of our pending chapter of Central Michigan Autism Society of America requested that guards be posted at all the doors to make sure children did not wander from the room. The "security" personnel did come in handy as it was a much needed detail. The Kulhavi Hall classroom where Fun Night was held was one that could be divided into two rooms if needed. That meant there were at least three doors leading out to the residence hall corridor. Bathrooms were out in the hall, so if anyone had to go, parents were alerted by SCEC students.

One of the most popular activities for the kids on Friday was the large motor skill area that was set up. One or more of the students brought in three big exercise balls, which were constantly in use. There were enough volunteers to allow for an attendant per child or two, so parents were freed up to chat--which I had, personally had found in the past to be a rare occurrence during regular "play groups" dominated by the attendance of neuro-typical children.

Anyway, many of the same activities offered at the first Family Fun Night were offered again. For a better idea of what went on last Friday please read the excerpts below from my previous post.

Again, thank you SCEC. Your efforts were much appreciated.
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.

[...] 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.


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, March 29, 2008

Wrapping Grief Week up with a Poem

Creative Corner Saturday
Week's theme: Grief

Note from JML: Writers are known for seeing pattens in other writer's work as well as in life itself. I saw a pattern of darkness first cast a shadow on my life about a year ago when my husband's grandpa died. The shadow continued to stick around for more than a year, overwhelming me some to say the least. Hopefully that shadow will drift away soon.

The parody below follows the trajectory of that shadow. It's based on a Brown Bear, Brown Bear, What do you See?, a children's book by Bill Martin and Eric Carle. The poem below is more for adults. In the book, one voice calls out and is answered by a variety of animal voices throughout the book. The voice below is just mine. The question for the reaper is rhetorical.

A big thank you goes to those who supported me via their comments and/or to those of you who have not been afraid to keep reading this week. I'll go with something a bit lighter next. I promise.

Grim Reaper, Grim Reaper
What Do You See?

by Julie M. Lorenzen

Grim Reaper, Grim Reaper
What do you see?
I see our Grandpa
Ambling away with thee

Grim Reaper, Grim Reaper
What do you see?
I see the end of a favorite series
Starring H.P. and Ye

Grim Reaper, Grim Reaper,
What do you see?
I see a young Child
Sitting upon your knee

Grim Reaper, Grim Reaper
What do you see?
I see a handsome Australian Actor
Falling from life's tree

Grim Reaper, Grim Reaper
What do you see?
*I see two favorite Aunts
Being taken by thee

Grim Reaper, Grim Reaper
What do you see?
I see something Odd
Jumping from the sea

Grim Reaper, Grim Reaper
What do you see?
I see a skull-masked Motorcyclist
Scaring Me

Grim Reaper, Grim Reaper
What do you see?
I see Someone
Looking away from Frost's Wood--
a necessity

Grim Reaper, Grim Reaper
What do you see?
I see a Writer
Setting grief free.
Note: I'll be OK ; )

*I'm the niece of just one of those aunts

Friday, March 28, 2008

Helping a Child With Autism Grieve a Loved One

Theme of the week: Grief

Obviously the best thing to do is seek out a grief counselor who has experience working with children with the hope that the counselor also has help dealing with autistic children. The sooner a qualified counselor is found, the better.

The other obvious thing is to guide your child the best you can. Let the child know what the social expectations are. Communicate somehow about what the proper things to do, say and feel are.

Confession: I wasn't all that successful in finding much while searching the Internet for good sources on this topic. Using the key words "autism and grief" brought me plenty of sites that dealt with parental grief and autism. I also don't have a whole lot of experience dealing directly with this topic--unlike the topic of yesterday's post. Ok, I do have some. My son was introduced to grief and death a year ago when his great grandpa died and he also went to a funeral for a former classmate. The latter experience was difficult and much social guidance was needed. I guess what I meant was that I have little experience in how to guide a child with ASD if an immediate family member dies--mom, dad, or a sibling.

I also searched Amazon for children's books. This is the best I could come up with. Please scroll down the linked to Amazon page for a list of books. I wouldn't suggest Gentle Willow. It's a book that is intended to help dying children.

What Might Work: What on Earth Do You Do When Someone? dies by Trevor Romain. It received excellent reviews by the "critics" on Amazon. There wasn't a bad review there. I suspect though, that this book may be more helpful in inspiring a parent who reads the book rather than a child with ASD.

What am I thinking: How on Earth do you Help an Autistic Child Grieve? I think there is a niche that needs to be filled here in terms of children's books. Paging experienced author Kathy Hoopmann...

Maria Shriver's Book What's Heaven? may work well too. A quote from one review by author Carolyn Rowe Hill:

"Maria Shriver does a beautiful job of putting together a story that helps explain loss to children...and she should know. She has lost many loved ones in her life, among them our country's president, her Uncle Jack (Kennedy), when she was eight. Her family had to endure much intrusion into their private grief during that difficult time for our nation."

Help Needed: I'd appreciate hearing from anyone with a better suggestion than the ones I made (though I gave it my best try.) Surely there has to be something out there on this topic...

Thursday, March 27, 2008

Autism and Parental Grief

Week's theme (after a brief diversion): grief

Most people who become parents children with autism do not realize that their child has or will Autism Spectrum Disorder (ASD) until after their child is born or adopted. A diagnosis of autism can come as quite a shock. Sometimes a diagnoses is late in coming because at least one parent is in denial that the child is not developing as expected. Denial that a young child is not developing as expected is fairly common, I believe. So is a general sadness (or even depression) that one's child will have difficulty achieving independence and obtaining the milestones of graduation, marriage and having children of their own.

For example one of the moms of the five featured children on Autism: the Musical (which I reviewed in yesterday's post) admitted she went through a period of depression. If you look at the Model of Grief first introduced by Elizabeth Kubler Ross in her 1969 book On Death and Dying you'll see that depression is one of the five phases of grief the author describes. I'm not sure if the mom's depression can be directly related to her daughter's autism, but it is quite possible. It's also possible that she had struggled with depression long before her child was born. It's hard to know when writing about a complete stranger.

It's worth noting that the extent to which a person goes through these different phases can vary. For example the depression phase can be mild and last for a brief period or it can be moderate to severe and last for years. If I remember correctly, the home video clip of the autism mom in the documentary was dated at 1999. The documentary, Autism: the Musical was filmed last year at some point and it seemed like this woman was still struggling. Her worries and sadness in about her child's condition were quite apparent. I can only hope that someday this woman will come to terms with her angst despite having had her marriage collapse in the last year and find some peace here on earth.

In comparison other moms like Elaine Hall, who created the The Miracle Project, get to the point where they become positive and proactive. Elaine seems to be at the stage of acceptance and is doing her best to help her child and other children on the spectrum and their parents as well. Not every parent can accomplish something this big. I, myself, am more of a supporter than a starter of projects like these. I also realize that there are many parents out there in need of more support. My advice to those parents is if you do not have the energy or motivation to start an organization benefiting people with autism, then do your best to support those that do. Doing something good and proactive will help you feel better about your situation. By supporting a project you believe in, you'll also more than likely help a parent who is really struggling.

Anyway these are the five stages as listed on Wikipedia under the heading The Kübler-Ross Model:

Denial: "It can't be happening."
Anger: "Why me? It's not fair."
Bargaining: "Just let me live to see my children graduate." (More like what will happen to my child after I die?)
Depression: I'm so sad, why bother with anything?"
Acceptance: "It's going to be OK."

Also From Wikipedia:

"Kübler-Ross originally applied these stages to any form of catastrophic personal loss (job, income, freedom). This also includes the death of a loved one and divorce, Another significant personal loss happens when people realize that they suffer from diminished or no fertility. Kübler-Ross also claimed these steps do not necessarily come in the order noted above, nor are all steps experienced by all patients, though she stated a person will always experience at least two."

I'm not the first blogger in the autism community to address autism and parental grief. At least one post was written two years ago. I liked what Brett Miller, (who is in the process of moving his blog from the blogger site of 29 Marbles to came up with as far as stages for parents that have children with autism.

Here are his stages:

"1. Denial - unfortunately, unavoidable
2. Confusion - again, unavoidable
3. Understanding - the process a parent takes to understand the situation. In this step, will answer the questions that come from the confusion stage.
4. Plan - based on understanding gained in previous step, make a plan for your life ahead (something parents do with all kids)
5. Act - live life to the fullest, adjusting the plan as your understanding grows."

I'm thinking those of us who have had their child diagnosed with autism a few years ago or more may agree with his stages. I certainly do. What do you think?

Wednesday, March 26, 2008

A Review of Autism: the Musical

A few weeks ago I wrote a post about Autism: the Musical which debuted tonight. I can say that this documentary generated excitement in my little community alone. Today I received a mass email and an individual call from two different people telling me about the documentary debuting tonight. I already knew, but the communications were a good indicator of the excitement that is surrounding this debut.

I did watch the entire ninety-minute documentary and found it to be a little too abrasive for my tastes (but honest all the same.) I squirmed a little when footage was shown of a naked boy. The editors blurred the image a bit and I think the clip was shown to demonstrate extreme behavior. What bothered me a little was that the boy did not probably choose to have that scene shown. Someone chose for him and it just didn't seem fair. It's a privacy/ethics issue rather than a decency one.

Another scene that bothered me was when one of the boys talked about being bullied. I'm glad that the issue of bullying was covered, but I was uncomfortable with the language coming from the child while recreating a scene in which he was bullied. The boy must have said d##k five times in two minutes or less.

Another scene of the same boy talking about bullying with his mom was shown and I think that would have been sufficient coverage of the issue. I realize, however, other viewers may have liked the edginess of this scene. I'm just an old fashioned writer from the Midwest who doesn't like hearing bad language coming from minors (0r majors for that matter.)

That said, this documentary really did capture the gamut of issues and topics surrounding autism. The strain that having a special needs child puts on a couple was quite evident. Relationships amongst people on the spectrum was another topic. There was a buddy relationship featured and also a puppy-love romance. Other issues covered: mainstreaming versus special education; limiting kids in special education with the prevalence of "life skills" courses; dating and single parenthood; and using facilitated communication to decrease frustration and to increase the social skills of nonverbal individuals.

I also liked that the documentary and musical featured abilities rather than disabilities. Also, the five children featured covered the range of the ASD spectrum--from nonverbal to Asperger's Syndrome. If you get a chance to see the documentary again, listen to the songs that the kids sing. The songs are positive. I'm a strong believer that people on the spectrum can, with some help, go beyond the expectations of the general society.

What the autism community needs are more people like Elaine Hall who created The Miracle Project, a theater arts program for children on the spectrum. She also directed the musical featured on the documentary. I'm not at all surprised that she is a parent of someone with ASD. Her son, who is nonverbal, was one of the stars of the documentary.

It would be great if this Autism: the Musical inspired more people to find funding for and to direct musicals or variety shows that star individuals with ASD. I have seen tonight that with the support and dedication of everyone involved, these projects can be quite successful.

Tuesday, March 25, 2008

One year Tribute: Remembering Great Grandpa

Theme for the week: Grief and autism, etc.

One year ago today my husband's grandfather (great grandpa to my boys) died of lung cancer. He was 80. Both boys went to the funeral. I had to explain to both sons (one on the spectrum and one really young) the various terms related to funerals--death, funeral home, visitation and wake. I told them that grandpa was in heaven and when they saw him in the casket it would look like he was sleeping, but that he wouldn't ever be able to wake up. They seemed to understand. I did have to coach my oldest as to what to say to great grandma. I told him to say "I'm sorry" and to say only that. He understood and listened. Both sons went to the visitation and funeral. Both sons behaved well.

Yes, my nine year old with ASD really did understand what had taken place. For a short time he called the man who just passed "the great one." My son has gone back to using the term great grandpa, but will usually say "he died" whenever we start talking about his great grandfather.

A little over a year ago, my husband Michael, who has a couple of blogs posted a tribute to our much loved family member at his Americans Presidents blog. An excerpt:

My grandfather Avery Lorenzen died last week at the age of 80. I went to his funeral last Wednesday. My grandfather worked for many years as a security man at Bowling Green State University and later as a sexton of a cemetery in Bowling Green, Ohio.My grandfather was a good man and I miss him. He had been ill for several years and 50+ years of smoking finally did him in as lung cancer claimed him.My grandfather was not a presidential historian. He was not active in presidential politics. He did not teach presidential history.Despite this, I owe this man much appreciation for my lifelong interest in the American Presidency. Simply put, Avery Lorenzen was opinionated about every American President from FDR on and he shared these opinions with his oldest grandson (me!) often and eagerly.


I remember grandpa lecturing at length on these presidents. He had a passion for it and he always shared his views. I remember debating with him my own views on these men (always different than his even at a young age) and then going to the library and looking stuff up when grandpa annoyed me too much. [...]

I remember best:- The debate as a 10 year old I had with grandpa in 1980 when he was convinced that the election of Reagan meant that World War Three was certain in 1981.- The praise grandpa had for Clinton's willingness to use his power to get women but his disappointment with which ones Clinton was selecting!- His views that all presidents, no matter how well intentioned, invariably are the tools of the rich. The essence of this view is that politics is about compromise and that the rich rig the game by setting unrealistic goals which are still served when a middle ground is reached.

My grandfather never went to college as a student. Some of his views are odd. However, he was a smart man and he could articulate his points well. I learned a lot from him and I know it did not bother him too much (or surprise him in the least) when I registered as a Republican at age 18. Avery Lorenzen, I will love you forever. Thank you. Rest in peace.

Monday, March 24, 2008

What did "my sign" really Mean?

Theme for the week: The "end," grief, sadness, etc.

Yesterday, I just felt like I needed a sign of what my future might be like. I'm coming out of a harsh cold winter full of storms that began with a tragic death of a young person and "middled" with the death of my beloved aunt in February and a serious, but so far non fatal illness that has plagued my mother in law all winter. Alas, winter has officially ended.

However, the first day of Spring marked the unusual death of my babysitter's favorite aunt. The latter was a beloved mother, aunt, sister, daughter and community member who just happened to be a victim of massive head injuries from something freaky that happened during a boating excursion in Florida. I didn't know my sitter's aunt, but my heart is hurting for "my" sitter and her family.

Anyway, I was out walking yesterday and was hoping for a sign that would give me a hint of the future. I didn't think to specify a "good" sign. I just assumed it would be. So, inspired by my want of "a sign", I changed my walking route a little and ended up passing two signs with leadership and excellence in the title (one was for the ROTC) I also passed a sign on a church that instructed readers to "weave faith into life." The existence of those signs could have been in my subconsciousness, but I can say I didn't take the alternate route with those signs in mind. I wasn't really looking for literal signs, although I was glad to see those signs. However, what I wanted to see was something unusual with a concrete message. Unfortunately unusual is what I saw.

What did a see? I saw the darn Grim Reaper riding a motor cycle down West Campus drive. He was wearing black leather biker duds and a ski mask that resembled a skull. It was a pretty scary Halloween costume. Only it was Easter Day. I've seen lots of strangely dressed folks on campus (where the bulk of my walking route is), but I've never seen that. It gave me the chills. Geez, life really can be stranger than fiction. OK, let's just say, that sight was a vision of the Grim Reaper riding out of my life for now. Or maybe we can say that the vision was a sign that it is OK to blog about something as heavy as Grief this week. Will promise that not every post fitting the theme will be a total downer.

I'm doing my darnest not to take the irony of spotting the Grim Reaper after requesting a sign too seriously. Last week I started thinking about blogging about autism and how it relates to grief in its many forms. I also worried that I'd scare people away. So I've taken my "sign" to mean that maybe it's OK to blog about such a heavy topic. At least I hope it is...

Sunday, March 23, 2008

Happy Easter

Happy Easter!
== T==

Friday, March 21, 2008

Update Week: A Friendship Award

Theme for the week: Spring cleaning via updates.

From an old Girl Scout Song: "Make new friends and keep the old, one is silver and the other gold."

Friendships are beautiful aren't they? So is this award. The flowers and soft colors reminds me of Spring, which began yesterday. Spring is the often symbolic of newness. At five months and counting my blog is relatively new, but I've had the pleasure of meeting a few other blogger parents out there including Maddy from Whitterer on Autism who gave me this award three weeks ago (that's why update week is a necessity here).

With autism awareness month around the corner, I've not had the time to reach out to blogger parents lately, but I'm hoping to visit other blogs and meet other autism blogger parents in the years to come. I'd pass this award on, but I think all the blogger friends I know might have this one already. If not, please accept this from me. You know who you are. Happy Spring and enjoy your friendships old and new.

Wednesday, March 19, 2008

Update: My Chromosomally Normal Male

Last November I wrote about getting the results back from the Genetic Clinic in a post titled My Chromosomally Normal Male. The title implies the results. At the end of my post is an excerpt from the letter I received on Halloween day. There was a paragraph near the bottom of the letter that told me to contact the Cytogenetics Lab if I was interested in them using a probe to check for triplication of the SNRPN region that "has been reported in some cases of autism."

In November I believed I was done with genetic testing. Frankly, I was tired and the initiative to order the probe just wasn't there. However, a few weeks ago my son's pediatrician called me to report that they had been contacted by the Cytogenetic's Lab to see if we were interested in the probe.

I consulted my husband and we decided that maybe it would be good for my son to know (in the future) if he had a genetic anomaly. So the probe was ordered. A few weeks later, a phone call from the genetic clinic confirmed what they had all ready told us: Our son is a "chromosomally normal male."

Go figure.

The excerpt from the letter received in October:

"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."

Tuesday, March 18, 2008

Update: Latest Field Trip for Arts/Music Camp

This Week's Theme: Spring Cleaning in the form of post updates

Art/Music Camp field trip posts as well as posts about reaching out to college students have had a prominent place here at this blog. Today's post involves both themes.

Our March field trip was on campus at Wightman Hall where most art classes take place. This time the trip was just for campers (a family fun night is planned for March 28). It was a two hour day camp focused on creating art projects.

Volunteers from the National Art Education Association (NAEA, a Central Michigan University group) acting as counselors hosted the day camp for eight or nine of our campers. Each camper had their own counselor. (The NAEA is the third group on campus that I'm aware of to have volunteered to work with children on campus. It's a sign of great progress.)

Anyway, with all the autism-related projects I've been working on, I was grateful that all I had to do for this field trip was send out a few emails. The director of the camp and the NAEA handled the small and large details.

A reporter from the student newspaper was on hand to report on the day camp as well as to photograph the event. My favorite quote from the article in Monday's CM Life edition came from a certain nine year old's counselor:

"I've never worked with Autistic kids before," she said. "I'm going to be a teacher, so this is good experience for that. It wasn't as overwhelming as I thought it would be. I'm not afraid to work with kids anymore. I didn't know how to handle this before, but now I have a better sense of understanding."

I guess that nine year old made a difference by just being there. Both the counselor and the child was interviewed and photographed for the story. Again a certain blogger mama is pretty proud.

I can vouch that the boy in question had a great time and brought home a lot of froggy-theme art projects. However, I encourage you to see for your self as to how happy that youngster was to be there. Hope you enjoy the article almost as much as I did.

Monday, March 17, 2008

Update Week: CanadianWalker/Autism Advocate Has his Own Website

Happy Saint Patrick's Day!

Today is St. Patrick's Day which means that in a just a few days Spring will officially begin. Thus, my theme for this blog is Spring Cleaning. Actually, I'm just freshening up a few old posts in the form of updates.

Today's feature is an update on a post about Stefan Marinoiu, the man who took a spontaneous long walk (450 kilometers or about 280 miles) through a blizzard in the Canadian Winter. His mission was to walk to Canada's Capitol, Ottawa, and raise autism awareness. His frantic daughter (his walk really was spontaneous) set up a Facebook group asking for help tracking her dad.

As a result people not only helped track him, but also helped him by offering food and shelter for the night. His daughter's efforts can also probably be credited with getting her dad some media attention. He did get a press conference and the opportunity to speak to some politicians in Ottawa.

I found out from one his daughter's updates that Stefan has had a website donated to him and his cause by the mixed community club. The name of the site is: ANSAW (Autism National Solution Awareness Walk.) You'll find a couple of pictures of Stefan (one on his walk), a list of newspaper headlines, and a newspaper article. There is also an opportunity to donate to his cause if anyone is interested.

An excerpt from my earlier post:

"Upset with a lack of services for his 15-year-old son with autism, he walked out the door of his home on January 31 in Toronto and set off for a long winter walk in Canada (450 kilometers or about 280 miles). This man, Stefan Marinoiu, is forty nine years old and diabetic. One of his legs causes him some pain. Marinoiu's walk seems to be spontaneous although it seems his walk was to end at the start of a hearing for an autism-related lawsuit. He did not tell anyone that he was to make the trek. He just left. His family, of course, worried about him--even after they figured out what he was up to. According to a recent online article in the Ottawa Citizen he's gone through a couple of blizzards. His daughter, Lia Margarita Marinoiu, has been keeping tabs on him and is providing updates on his progress on her Facebook site."

Saturday, March 15, 2008

CREATIVE CORNER SATURDAY:Making Autism Awareness Ribbons

Why the puzzle piece pattern? The Story: The autism awareness ribbon is made up of puzzle pieces to show how puzzling and mysterious autism can be. The different colors and shapes show how all people with autism are different. The colorful ribbon demonstrates that there hope for a bright future for those individuals living with autism.

Why the ribbon?: The pattern is eye catching and it will help people who know about autism speak about the subject with those people asking about the ribbon. After I typed most of these instructions up, I found that those embracing neurodiversity are sometimes offended by the pin. They think the pieces mean that those who are autistic are pieces that need to be put together. If you reference the story above, you'll see that that is not true. The pieces represent the mysteries of the condition.

Materials Needed: Jigsaw Pattern Ribbon, scissors, glue gun and glue, pins made for such projects (should have a rectangular flat back), turquoise (aqua), yellow, blue and red craft paint, small puzzle piece puzzle pieces, and storage bins or plastic bags for finished product. If the plan is to make dozens of ribbons at one sitting then having enough volunteers to form an assembly line or (assembly stations) is helpful.

Suggested Assembly Stations: 1. ribbon cutting; 2. puzzle piece painting; 3. hot gluing 4. packaging. Note: Having one person on hand to move pieces from one station to another may be helpful

Instructions (tailored for a group):

1. Make sure each ribbon cutter has a pre-cut ribbon for reference. Ribbons should be six or seven inches long. Cutting ribbons at an angle gives the ribbons an extra bit of style. Note: This job takes the least amount of time. Only one or two cutters are necessary.

2. Cover a table with newspaper or a large piece of cardboard to protect surface for paint. Put the bottles of paint in the middle of the table. Have each painter choose a color. This eliminates the need to constantly rinse brushes. A one-inch width sponge brush works best, although other types of brushes gets the job done too.

Paint the cardboard side of the puzzle so that paint will adhere better. Two coats of yellow paint may be necessary for adequate coverage. Only one coat of all the other colors is needed.

Each painter should have enough space to place finished pieces nearby for drying. Note: It only takes a few minutes for each piece to dry. Once dry pieces should be placed in a container and moved to a gluing station.

3. Make sure that the gluing station is placed by electrical outlets. Extension cords and a power strip may be helpful. The cords on glue guns seem to be relatively short. The finished product requires three dots of glue: 1. to shape the ribbon; 2. to glue on the puzzle piece; 3. to glue on the pin. It may be most efficient to assign those at the gluing table just one of the three tasks. Have a small plastic storage bin or one gallon Ziplock back on hand to contain the finished product.

For gluing, position the strip so that the open edge of the loop is facing the back and the folded edge is facing front. A finished product on hand may be helpful as a point of reference.

Use a drop of glue to hold the ribbon in place. Next, attach puzzle piece. Finally, glue the pin on. Decide which way is best to position pin. My group glues pin so that the point faces upward.

4. Decide how the pins will be packaged. Some groups, such as BBB Autism attach the pin (see their second step) directly to a laminated card with the puzzle pieces. Our group decided to glue the puzzle piece story on a sandwich bag containing a single ribbon. Note: The story is optional as it requires extra work and money.

5. Decide how much to sell the pins, if they are to be sold as a fundraising item. My group (located in the U.S.) will sell each pin for $2.

Hope these tips are helpful. We had a fun time making these ribbons. It is a great support group activity!

Thursday, March 13, 2008

Asperger's Syndrome: My Little Professor

Autism Advocacy Diary 1.1c

My oldest son (who has Autism Spectrum Disorder) and I had the opportunity to visit a college class (graduate-level counseling course) yesterday evening. Visiting a college class to talk about autism is my favorite advocacy activity and one of my son's favorite activities period (well, the visiting part anyway). He just loves to get up in front of a bunch of smiling faces and talk and talk and talk. He can go 40 minutes or more. He's my little professor.

We showed up at 5:30 p.m. at a building called Rowe hall. His little brother and I sat in the back of class as my oldest son took "the stage." He went right up to the front and asked if he could write his name on the chalkboard. He received permission and after he wrote his name, he introduced himself as Mr. Lorenzen. He also told them "his other name" (the one on the chalkboard.) Then he said:

"Ladies and gentlemen" he said. "We will begin this meeting and I will teach this class."

"The Little Professor." Those words can be found on some websites that explain Asperger's Syndrome and the children who have it. For example here is how the National Institute of Neurological Disorders and Strokes (NINDS) describes the signs/symptoms of Asperger's Syndrome:

"The most distinguishing symptom of AS is a child’s obsessive interest in a single object or topic to the exclusion of any other. Some children with AS have become experts on vacuum cleaners, makes and models of cars, even objects as odd as deep fat fryers. Children with AS want to know everything about their topic of interest and their conversations with others will be about little else. Their expertise, high level of vocabulary, and formal speech patterns make them seem like little professors.

Children with AS will gather enormous amounts of factual information about their favorite subject and will talk incessantly about it, but the conversation may seem like a random collection of facts or statistics, with no point or conclusion."

The way I describe it, my guy is like a little professor. However, he doesn't quite fit the NINDS' description of Asperger's Syndrome. Yes, he can talk on and on. But no, he doesn't usually bore people. Sometimes he actually does have a point or conclusion when he talks.

If you haven't ever met a charismatic person on the spectrum, then you haven't met my son. He's a smiley little charmer, who sometimes misses social cues. He also faces a certain degree of difficulty in getting just the right words out. Further, he has a lot of problems with small and large motor skills. Finally, my son's preference to be in charge puts him in the Asperger's end of the spectrum. However, at times I think he fits better in the Pervasive Development Disorder Not Otherwise Specified (PDD-NOS) category.

Unlike the little professor as described by NINDS, my son does not elaborate much about his favorite subject--froggys. He knows the basic life cycle of a frog, but is more likely to want to sing you his favorite song about frogs than discuss the scientific issues surrounding the creatures. (Yes, he did sing his song yesterday--to much applause. My little professor, who is also quite a ham, took a huge bow.)

The back story (please read on, there's a funny story buried here): A friend of mine, the director of the summer arts and music camp my son is a part of, had asked if he could help her out with a presentation for her counseling class. Knowing that my guy loves to get up in front of people, I said yes. I also warned her that he'd want to steal the spot light from her and her other helper, who happens to be Central Michigan University's Autism Impairment Certification Instructor. (She's also a friend of mine).

My son's job was to replay the role of a potential camper so that my friends could demonstrate the intake process that the two used last Spring to screen applicants for the free camp. They gave him some items like a Native American Talking Stick, some fur, etc, and asked him some questions about those items.

They also had him draw a picture (a froggy), tell a story (about froggys, of course) and smell some aromatherapy items my friend put before him. My friend asked him what is favorite scent from the camp was.

"Oh," he said. "I like all of them."

"Most people like this scent," she said, holding a tube of peppermint oil under his nose. My son hates peppermint and if she didn't know it then, she certainly does now.

"Ptooey!" he exclaimed to much laughter. It was the only scent getting that reaction from him. All the other scents were "good."

I had feared my little professor would be too much of a ham in terms of showing off. He did try to pull away from the two from time to time to start talking to the class. However, both demonstrators were able to work around his showmanship. Together the three of them pulled off an excellent presentation. I suppose my little professor's focus on being the center of attention fits the NINDS description of an obsessive interest. If he would have done everything perfectly with the two presenters, then people would have wondered if he was on the spectrum. His little spotlight grabbing preoccupation most likely dispelled any doubt the college students had.

As for my reaction, I put my head in my hands on a couple occasions (when he offered to give a tour of our house, for example) and giggled with my younger son at some of "the professor's" antics. Mostly, however, I was a pretty proud mama. After we left the classroom, my son (the professor) told me that the presentation was "the best meeting ever."

Tuesday, March 11, 2008

Diary of an Autism Advocate 1.1b: Meetings and More Meetings!

This weeks theme: Diary of an Autism Advocate

Fun Fact
: My sons asked to accompany me to all three meetings on my calendar for this week. I'm not sure why! They would have been a little bored.

Yesterday evening my parent group met at a local campus child development lab. Eight or nine children were watched for free by members of the Association for the Education of Young Children while nine mom's in another room made autism awareness ribbons to sold at autism awareness events in April. Proceeds from the sale are to benefit the pending Central Michigan ASA chapter. My guys would have actually enjoyed playing with the other kids, but those of us who plan these things tend to get concerned about not overwhelming volunteers with too much work or in our case too many children. So my guys stayed home with their dad, who is being very understanding this week.

Anyway, we had a fun evening with lots of chatter and productive activity. I think craft night (making the pins) was a hit. Dozens of pins were made and time went by quick.

In a scheduling glitch, we had our Central Michigan ASA (status pending) meeting tonight from 6:30 to 7:30. That meant four of us had back to back meetings (in terms of evenings) this week. The glitch wasn't anyone's fault. We were more concerned about who could come to the meetings when rather than our calendar as a whole.

Most of the time tonight was spent discussing getting liability insurance, sending in the ASA Chapter Application packet and finalizing the our extensive calendar of autism awareness events. We have a ton of activities planned for Autism Awareness Month which took some time to discuss. I was impressed that we finished in an hour. Maybe it was the back to back meeting thing and the fact that our president is in the middle of a heavy work schedule (her day job, not ASA matters).

Tomorrow is my son's annual Individual Educational Plan meeting. It should go OK. He has made a lot of progress since my husband and I started attending these meetings five years ago.
I already received what I wanted which was to have my son attend the same school he is attending next year. As long as my guy keeps progressing, I'm happy. This meeting should only run about an hour as well.

Tomorrow evening's commitment should be more fun. My son is going to help a graduate student and professor (who attended tonight's meeting) give a presentation on the art camp he attends. They are going to do a demonstration of the intake process for the summer arts camp my son attends. The grad student my son will "help" is the arts camp director. My guy doesn't know about the class visit yet, but he'll be delighted. He loves college students and being a special visitor to their classes. Of course, I'm the proud mom in the background. My guy is proof that individuals with autism have a lot to offer.

It's been a busy week already, but a lot has been accomplished by my group. I have to admit, though, that I'm glad that there are not any meetings on my schedule for the next week. Whew!

Monday, March 10, 2008

Diary of an Advocate 1.1a

This week's Theme: Advocacy Diary

Why the Diary: Because this writer and some of her friends have been very busy planning awareness events for April and she would like to share some thoughts about said efforts.

This evening my parent support group is meeting for the first time since December. Busy lives, medical issues, etc. has held up our schedule a bit. Tonight we are going to make autism awareness ribbons to sell for $2.00 each. The proceeds will go towards purchasing the insurance our group needs to gain chapter approval from Autism Society of America. We'll sell the pins at some of our awareness events--unless we sell them all out first.

Two other parents bought the supplies at Jo-Ann Fabrics and Crafts, the one place in our small city that stocks the puzzle piece ribbon. Jo Ann's does not seem to offer the ribbon online, but there are also some websites such as the ribbon shop that we may try to buy from in the future.

We are going to meet in a child development lab at the Central Michigan University Campus. The lab has two adjoining rooms. It is perfect because a group of students majoring in early childhood, the AEYC, is going to provide free childcare. It looks like we'll have a bigger group than normal. The children will be one room with the college students and the parents and other advocates will be in the other.

We've been getting an average of about four or five people attending our meetings. Hopefully a few more will come will come to make the ribbons. It should be fun.

Saturday, March 8, 2008

Creative Corner Saturday: Essay

Today's special feature was supposed to be a photo illustration, but it didn't quite work out that way. To say the film didn't turn out is an understatement. It was split from end to end and therefore inpossible to develop and print.

Now I'm trying to write an essay and my blondie boy of a five year old is standing right beside me demonstrating a very noisy toy. To say that he wants my attention, is, well an understatement.

Wouldn't life be great if everything worked out the way we wanted to? Wouldn't it be great if everyone behaved the way we wanted them to?

But that is not how life works. I want to take my time and write a long essay about stress and tie it in neatly up with my theme. My five year old does not want me to do that.

"Please, please, please, hurry. Go up the stairs with me."

"What do you want me to do?"

"Watch Goosebumps. Hurry."

Oh well, it doesn't look like this creative corner is supposed to be all that creative today. I guess I better go watch Goosebumps."

Friday, March 7, 2008

One parent's stress management toolbox

Years ago I realized I couldn't be an effective, caring parent if I was a stressed out mess. I also realized that being constantly stressed can lead to serious health problems. (See yesterday's post.) Here are some of the things I do to reduce stress--my toolbox. Some of the links provided are for websites designed for families who have individual(s) with special needs.

1. Daily hour-long walks when possible. (Not really possible in the winter. My favorite time to walk is at 7 p.m. when it's too cold and dark to walk in Michigan from November to March.)

2. Time management (to-do lists is my favorite time management technique)

3. Quality Family Fun time

4. Yoga (occasionally)

5. Pilates (occasionally)

6. Meditation (use occasionally this to clear stressed out mind to make sleep possible )

7. Maintaining a sense of gratitude

8. Maintaining of a positive attitude. This article discusses the potential health benefit of being positive.

9. Counseling (a two year stint did wonders)

10. Humor

11. Getting out without child in tow. It is best to leave guilt behind. (The link on the benefits for respite care is specifically for families with special needs children).

12. Dark chocolate

Thursday, March 6, 2008

Busy Lives and The Side Effects of Stress

Here are a few side effects of stress in terms of one's health according to a website called Stress Focus. For the entire list and explanation please click on the link. Tomorrow the focus will be on some quick fixes for stress.

Short term:

Diversion of the blood from less vital to more vital organs.
Increase in the heart rate to supply more blood quickly.
Increase in the blood pressure to supply blood efficiently.
Increase in the respiratory rate to get more oxygen from the atmosphere.
Breakdown of glycogen stores in liver and muscle to get more glucose.
Formation of more glucose from non carbohydrate substances.

Some Symptoms of short term effects:

Loose stools
Increased blood glucose levels.
Headache, back ache and neck pain
Depletion of energy stores
Flare up of diseases like eczema, psoriasis, arthritis
Difficulty in concentrating
Memory disturbances
Decreased sexual drive
Loss of appetite
Outbursts of anger
Loose stools
Increased blood glucose levels.
Headache, back ache and neck pain
Depletion of energy stores
Flare up of diseases like eczema, psoriasis, arthritis
Difficulty in concentrating
Memory disturbances
Decreased sexual drive
Loss of appetite
Outbursts of anger

Long term effects:

Chronic head ache
Mood swings
Anxiety disorder
Substance abuse
Memory disturbances
Heart attack due increased blood pressure, sugar and cholesterol
Stroke due to similar reasons
Weight loss
Exacerbation of allergies including asthma
Irritable Bowel disease
Ischemic Bowel disease like Crohn's disease
Decreased sexual drive

Why I'm blogging about this: Life has been hectic lately as my local autism group has been preparing for autism awareness month in April and fundraising to get necessary insurance for our up and coming Autism Society of America group. I have seven boxes full of fundraising stuff sitting in the entrance way of my home.

Throw in this two major "hospital" days this week and you get two stressed out parents. This past Tuesday was "kidney day" in Grand Rapids, Mi which entails four hours total of driving, 2 appointments, an ultrasound and two stops for food and behavior management for my nine year old with ASD and kidney ailments. I was responsible for that one.

Wednesday was Cleveland Clinic Day which meant my husband left home to go to Ohio so that he could help my mother-in-law (the patient) and my father-in-law through a day of testing. Fortunately both days went as well as can be expected. The health of both patients is or can be stabilized respectively.

Monday, March 3, 2008

"Mind Tools" for the Busy Parent

Theme for the week:

Parents: Achieving balance in one's life

I found a nifty site this morning. Mind Tools has many useful pages for the busy parent. The site is geared toward the career builder, but it also has the potential to help parents.

One can find helpful information about stress management, time management, memory improvement skills, problem solving skills (if they aren't fully developed already!), project management (useful for blogging, maybe?), information and communication skills, and practical creativity.

Examples of specific pages:

Under the time management heading there is a page for Effective Scheduling.

Under the stress management check out the Burnout Self-Test.

Hope you find this website helpful. A drawback to this site is that one could be tempted to spend too much time at Mind Tools. A paid membership is encouraged, but there seems to be plenty of free information offered.

Saturday, March 1, 2008

CREATIVE CORNER SATURDAY: "I want to fly too," by my youngest son


The Poem by "little C":

"I Want to Fly Too"

I will fly too
With my beautiful wings

I will be a butterfly
And my brother will be one too

Talents Featured: Poem as said to me by my youngest son (then three). It was inspired by the picture I drew for him.

The scan was done by my oldest son, on the autism spectrum. It's not a perfect scan, but it will have to do as time and patience seem to be limited today. Just visualize an even border.

The picture was actually drawn by me for my youngest son (see story at end of post). The original was done in pencil, but tracing with a felt tip pen was necessary for scanning purposes.

Back Story: Two years ago, I was at the dining room helping my older son work on a picture. He drew something that looked like a big beetle. After conversing a little with him I discovered it was an airplane.

"I'm going to fly," my son said.

"I want to fly too!" my little one said. Knowing my little guy couldn't draw that well, I whipped out a piece of pink construction paper and grabbed a pencil. It never occured to me to draw an airplane. Instead a smiling butterfly appeared on the paper. It was smiling because my little one always smiles.

"Yay!" The artwork passed muster. Then the little guy surprised me by uttering the above featured words--words I still consider to be his first poem. After he said those words, I promptly drew another butterly to represent his brother.

"Little C" hasn't said anything quite as poetic since, but I think he'll appreciate this story when he gets older. The above artwork and poem on this post will be featured on a scrapbook page.

As for me, I'm hoping both boys will soar to high heights as they mature. We have certain challenges in our home, but "flying" is definitely possible.