Friday, February 29, 2008

Blogger Friends and "Sib Week" Has Kept Me Blogging

Award Note: If you look at the two symbols (the less than sign and the three), you'll see a sideways heart. Translation: "I love your blog!"

Working with a respective theme the last two weeks has given me much needed focus and determination to keep writing. I also like the way sticking to a theme allows one to really explore a topic. The week before I focused on Adults with Autism. This week my theme is Siblings of Children/Adults with Special Needs (not just autism).

Anyway, my blogging energy has been fading lately, but deep down I want to keep writing. It helps to know that I have blogger friends out there who have encouraged me in their own ways. A super-harsh winter, a couple of recent deaths of loved ones, and a ton of advocacy work has left me feeling more than a little tired (mentally) lately.

First, thanks to Marla for writing in about what it is like to be a sibling of someone with special needs. If you have a chance, please take the time to read her comment on my post. The post is titled Siblings: my local editor's column about his two sons. Marla's insights are priceless.

Also thanks to Elissa at Managing Autism for writing about her beautiful little girl on her own blog as well as posting a few lovely pictures. Elissa created a truly wonderful tribute to the little sib in her family. Her post was a very thoughtful nod to my "sib week." I appreciate, too, her very nice comments on my posts.

I also am grateful for the many thoughtful comments (on some pre-sib week posts) of Casdok, Maddy (who gave me the less than three award on Monday) and everyone else who has commented this week or before (mind a little too foggy to list everyone.) I kind of like (love in Julie speak) this corner of the mom blogosphere to which I seem to belong. Feel free to pass on the award. I tried without success to post the picture of the award today. Hopefully, I'll be able to get it on this post by tomorrow. Update: Had a little more success today (March 1) getting the award posted--as you can see!

My Blogger Agenda:

Saturday, I'll wrap "sib week up with my newly started (last Saturday was the unofficial first offering) CREATIVE CORNER . I'm not sure if I'll start another theme on Sunday or if I'll begin a blogger break to recharge my energy. If you have a chance please stop by--that is if you like a little poetry, kiddy drawings and/or butterflies. I haven't decided if I'll stick soley to themed weeks, but hopefully the Creative Corner will stay. I'm thinking it might be a great way to share the creative endeavors of my entire family (and maybe other friends and contributors as well.)

Next week is Spring Break at Central Michigan University. My boys will still be in school and my husband at work (the library on campus will still be open) so we'll stay in frozen Michigan. Oh, for a little sun and warmth. I think it was only seven degrees yesterday smack here in smack dab in the middle of what has been dubbed "The Mitten" (lower pennisula of Michigan). As for me, I do need a little time to catch up with housecleaning and advocacy projects. Oh, I'll probably write at least two posts next week. I just can't help myself...

Thursday, February 28, 2008

Helping a Sib Understand Autism

Photo: My older son, who is on the spectrum, took this picture of his little brother. My youngest, five and not on the spectrum, understands my older son's love of frogs and loves to play "froggys" with his brother. He also understands "silly" (inappropriate) behavior and temper tantrums (meltdowns). However, I wonder how much he understands about autism. How much should I tell him? What should I tell him?

A Different Scene: Almost 9 a.m. this morning a mom, me, is walking with a five-year-old boy through the local elementary school playground to car after dropping off her older son at his special education class. Please note that the school mentioned in the following conversation is the one my son attended last year. There seems to be one special education class per elementary school in the six elementary schools in our district. The classes vary in their age and ranges of disability. This means a few school switches are necessary as a child in my local education system ages.

The Conversation:

Five year old: "Next Year I won't be going to Rosebush school like "C" did at my age.

Me: "No you won't. You'll be going here. You won't go to Rosebush like your brother. Your brother needs to go to a special education class to help him get through school. You won't need special education like your brother.

Five year old: "Yeah, you said that last time."

Me: Silent but thinking, "I did?!"

I probably did say something like that to him before, but blocked it. Communicating his brother's disorder to my younger guy gives me great anxiety. I want to make sure I tell him properly and do more good than harm. I'll probably be looking at some children books on the subject soon.

In the meantime, I found a great link where helpful information can be found. The document is titled "Helping Siblings Understand Autism and Encouraging Positive Relationships." The weakness of the document is that it goes more into when to talk about autism rather than how to explain the disorder. What I do like about the information on this link is that the author addresses how perceptions of the disorder change as the sibling ages--from early childhood to adulthood.

Wednesday, February 27, 2008

A Book Review: Riding the Bus with My Sister

Cover Caption: The above is the cover for the DVD of the movie based on the memoir by Rachel Simon. The cover features actresses Rosie O'Donnell and Andie MacDowell in their respective 2005 television movie roles on Riding the Bus with my Sister. One can also order the book which has a cover featuring a big tree and a little bus (rolling down a street in the background) from Amazon.

I chose to review Riding the Bus with My Sister for a graduate-level English class I had a couple of years ago because it is a popular book that dealt with a relationship built around special needs. The book was released in 2003 and a television movie was released two years later. My original review was three to five pages long, so I'll just summarize what I wrote to make for a more blog friendly post.

The bottom line is that I love this book. The author writes in a way that is both informative and entertaining. Simon portrays her sister in a way that made readers appreciate her sister Beth, a woman with mild mental retardation. Beth is portrayed as a woman with a funky fashion sense who exercises her independence by riding the bus daily. The author explores her feelings about Beth's lifestyle and comes to respect it when she starts riding along with her sister.

The best part about the book is that one can see how the relationship between the two sister's changed over a few decades. Rachel and Beth were close during their childhood, but drifted when the developmental gap widened and the author became a teenager.

The two drifted apart before a letter comes to Rachel inviting her to a plan of care review meeting for her sister. Fortunately Rachel realizes that this was Beth's way of telling her she wanted her sister back in her life. This is also the point where Rachel really takes their parents' place and becomes the primary advocate for her sister. Simon, a creative writing professor, does a great job of profiling the ups and downs the two face as they become reunited as sisters.

I also like how Simon dealt with the issues that adults with special needs face. Simon writes honestly about the challenges of living independently in terms of both family and public acceptance, public services, fertility and relationships.

In conclusion, I feel that siblings and parents of children and adults with special needs can benefit from reading this memoir. I hope you enjoy it as much as I did.

From the School Library Journal by Peggy Bercher (a review on Amazon's website):

"Even though Simon didn't know where it would take her, she accepted [Beth's invitation.] During that time, she came to see her sister as a person in her own right with strong feelings about how she wanted to live her life, despite what others thought."

Monday, February 25, 2008

Siblings: my local editor's column about his two sons

This week I'm writing about the relationship(s) between typically developing siblings and their special needs (not necessarily autistic) brothers or sister(s). Yesterday, I wrote about the relationship about my nine year old with Autism Spectrum Disorder and his neurotypical five-year-old brother and my hope that they will stay as close as they are now. I should note that my older son has a mild impairment and that the developmental divide between the brothers isn't all that wide (at least not at the moment).

However, there are families with children where the developmental gap is much wider because of a severe disability. That doesn't mean that a relationship doesn't exist. In some cases the siblings may be much closer than they otherwise would be. A disability in the family may also mean that the non disabled child grows up to be a mature, compassionate adult.

By sheer coincidence, the editor of my local paper, The Morning Sun, published a column in yesterday's paper where he wrote about the relationship between his seventeen-year-old son and his younger, severely disabled brother. The editor calls his eldest son "his brother's hero." Below is an excerpt, although I'd encourage you to click on the link and read the whole column. It's an inspiring story.

Editor's column: A Special Bond Between Brothers

"Zac was probably 12 the first time he saved Seth's life, using a finger sweep to dislodge a Lego.
But the instinct to love and protect was there much earlier.
Seth was an unusual looking baby, with low setback ears and other abnormalities.
He attracts stares.
Zac can deal with staring children; not so much staring adults. One day at the grocery store, a lady stared at Seth aisle after aisle. Eventually, 7-year-old Zac had seen enough.
"What are you staring at?" he said. "He's just a little boy."
That's my Zachary.
Seth was just a baby the first time anyone ever suggested that things would be different for Zac.
We didn't believe them.
We do now.
It wasn't very many years later that Zac would wish his brother could talk and play, that he had a normal brother and not just a disabled one.
Having a severely handicapped sibling, the experts said, is one thing.
But being the only sibling to a severely handicapped brother is quite another.
With Seth a teenager now, Zac's the one who carries him to bed, helps him to the bathtub and does most of the heavy lifting. "
"Seth does not give back, at least not like most kids do in a loving relationship.
He won't play with you. He won't return a smile. He takes a lot of work. Which is why I'm filled with both pride and sadness at Zac's sense of responsibility for his brother. "

Sunday, February 24, 2008

The Siblings in My House:"two" and "too"

Photo: I guess two heads on a pillow was better than one. As you can see there is an abandoned pillow in the bottom right corner of the picture. This was taken in June, 2007 at my sister's house which is a 3.5 hour drive from where we live. My guys usually share sleeping accomodations when we travel.

"I want to go bye-bye too," my then eleven-month-old boy said as my husband and older son (then five and a half)prepared to walk out the door one evening a few years ago.

"Did he say what I think he said?" I asked.

"Yes," my husband replied.

"What do you think he said?"

"I want to go bye-bye too."

I counted the words on my hand. Seven, counting "bye-bye" as two words.

'Is that possible? My baby spoke a full sentence? Already?' I thought.

Well the word "too" quickly became a frequent word in my little son's vocabulary as he began to follow his big brother around. My husband and I learned to have two treats on hand when the older one asked for a snack. As "too" became part of my little guy's vocabulary, "two" became a regular part of ours.

It took a long time for my oldest to say "too" and "two". My eldest, who has autism, said a few words at eleven months, but did not speak a full sentence until he was nearly five years old. Unlike his little brother, he had trouble with pronouns like "I," "we," and "you." He referred to himself by his first name until he was about seven. Difficulty with pronouns is not uncommon for children on the spectrum.

Now that my boys are five and nine the words "too" and "two" ones that we are starting to have difficulty with again. No one in our house has trouble saying those words. It's the implementation I'm worried about.

My oldest has already to switch schools a lot three times to go where his age-appropriate special education teachers were located. My little guy used to be sure that he'd get to go to Roshbush elementary and ride the bus (for special ed students) too--just like his older brother. But no, he'll start at the school around the corner at Vowles in a regular education class with other neurotypical kids.

My little one doesn't really grasp the notion that my eldest is part of a special education classroom (for part of the day.) He'll also learn soon that he won't ever get to be a part of Special Olympics "too" as my older son is, although he already laments that he can't ride horses with the his brother in the Proud Equestrian Program. The summer arts and music camp for kids with high functioning autism and Asperger's Syndrome also looks tempting. The five year old wants to go "too." The rumor is that the camp will allow siblings in some day. We'll see.

I'm starting to get my youngest son enrolled in activities of his own. He has been in swimming and music classes. I am hoping to enroll them both in swimming together in the same class soon. However, I'll still have to face the challenge of finding activities that both boys can do both separately and together.

My guys are great playmates now. I hope the two remain great buddies and that "too" will always be a part of their vocabulary. Hopefully, my oldest son's special needs will not split them apart. My youngest has a few friends and is already getting invited to birthday parties and play dates. My oldest has friends as well, but most of them are on the spectrum like him. That is OK with us, but we also have the goal of ensuring that our eldest is included in general society too.

Saturday, February 23, 2008


Parents with extensive knowledge of autism have the potential to become great advocates. Adults and children on the spectrum need more advocates to bridge the gap between the need and the accessibility of services. Here is a little poem about what advocacy means:


Acknowledgement of issues and varying viewpoints
Dedication and Determination
Youth or youthful energy

Friday, February 22, 2008

Mozart and the Whale: an Enjoyable Film about Adults on the Spectrum

Friday is a good day to write about movies as the weekend is generally a popular time to rent a video or visit one's local cinema. You may or may not have heard of Mozart and the Whale. It's an enjoyable and tolerable film (in its portrayal of autism) that came out in 2005. It stars the very cute Josh Hartnett and the lovely Radha Mitchell. The screenplay was written by Ronald Bass. Bass can be blamed or acclaimed for c0-writing the 1989 film Rain Main. He won an Oscar for that screenplay.

Mozart and the Whale didn't win an Oscar, nor was it nominated. However I think the autism community may find the 2005 film more tolerable than its predecessor. Both films are about adults with autism. Both feature savantism, which I believe is kind of rare in the autism community. I suppose Hollywood wouldn't accept autism without something fascinating like the impressive intellectual abilities of savants. Perhaps these films will be someday credited with paving the way for movies that deal with non-savant characters with Autism Spectrum Disorder (ASD).

The biggest difference between the two films is that Rain Man is about two brothers (one on the spectrum and one not) while Mozart and the Whale features a romance between two individuals with ASD. Both main characters of the latter film are savants. Hartnett's Donald (the whale) is a math genius and Mitchell's Isabelle (Mozart) is a music and art wonder. Both Hartnett and Mitchell are believable in terms of their characters having ASD. They also bring likeable characters to the big screen. Hartnett has "the walk" and "the talk" down pat and Mitchell does an impressionable scene where her character has a meltdown in public.

The tagline for the movie is "They don't fit in. Except together." The two characters meet at a support group that Donald has organized. Of course, the major theme is the ups and downs Donald and Isabelle face as they attempt to form a lasting relationship. However, a viewer can also get a sense of the understanding each character has of the other because they can identify with their significant other's quirks.

What I liked most about the film was the support group scenes. There were some memorable characters in the group. One kept smiling even though someone she knew just died. Another female character bolted when ever sex was brought up. One of the guys who was rejected by Isabelle became jealous of Donald's romantic relationship with the beautiful woman.

Conflict within the group came up several times in the film. Sometimes the stimmming of one individual (watching a hand mixer whirl) would bother another person. One time the (sex-phobic) girl protested when one of the guys snatched the cookie she was staring at. It was interesting to see the organizer, Donald, settle these types of disputes in the group. If I remember correctly, he was mostly successful with his interventions.

It was also great to see how much these people cared for one another. When Isabelle went through a personal crisis, the group rallied around them. They especially supported Donald who was trying to help Isabelle without having a lot of success.

Anyway, the suggestion that people with ASD should have a support group of their own is a good one. Although I realize that individuals with autism should be included in society as a whole, I also think they should have the opportunity to be with people in a place where they are free to be themselves. I suspect individuals on the spectrum are probably most comfortable with those who identify with their condition.

Plenty of individuals with ASD can tolerate and even like being around the rest of us. However, I have seen the benefits of kids with autism being around others not unlike themselves at my son's summer arts and music camp. The kids relaxed and enjoyed themselves. I think adults would also appreciate such an opportunity.

Mozart and the Whale is rated PG-13 for sexual content and language. Indeed the language is frank and can make one feel uncomfortable. I would suggest the film be seen only by adults and older teenagers because of the strong sexual content. However, I'd definitely suggest this film despite the over emphasis on savantism and the frank sexual content. Hope you enjoy the film as much as I did.

Thursday, February 21, 2008

Successful Adult with Autism: "I'm an Anomaly"

This week I'm writing about adults on the spectrum with autism. Previously I wrote about the need for services and support and the challenges adults and/or their caregivers face in obtaining help.

However, I should note there are some adults on the spectrum who are quite successful. Some are well known and some are not. Today I will profile someone who may not be as well known as someone as say Temple Grandin. I found the story of Ruth Elaine on the Autism Society of America website. Ruth Elaine is a married grandmother who is the Midwest board director for ASA. Diagnosed at age 54, she previously graduated from college with honors and became successful in the clothing business before retiring to become a Reiki master/teacher "mentoring people on the autism spectrum."

Here is the rest of Ruth Elaine's inspiring story in her own words:

"One word that describes my journey with autism is anomaly; I was born with profound autism before it was known as a disorder. Nonverbal, I identified with Midnight, a Persian cat, until a neighbor insisted that I drink from a glass like a child, not lap milk from a saucer. Easily distracting myself with glittering lights and sparkling prisms, I spun myself through early childhood. A school principal, nurse, psychologist and the Girl Scouts helped me learn to talk, read and become socially appropriate, to save me from being sent to the institution for the mentally ill recommended by our doctor."

Wednesday, February 20, 2008

North Shore Health System Web Page: On Types of Help that Adults with Autism Need

There is no doubt that children with autism need various types of therapies: speech, occupational, behavioral, etc. My child is currently receiving speech, occupational, and physical therapy. Further, his special education teacher as well as my husband and I continuously help him with social and behavioral skills.

Adults with higher functioning autism or Asperger Syndrome may or may not need these types of therapies. It depends on how they have learned to cope with their condition. However, it must be noted that adults on other areas of the spectrum require different types of therapies well into their adulthood and perhaps for their entire life.

I found a page put up by the North Shore - Long Island Jewish Health System on their site that outlines the types of help that adults with autism need. The page is part of their "Tool-kit for Healtcare Professionals". I found this page to be well organized and well written. (I listed most of their points near the end of this post.)

Unfortunately, the page doesn't address the difficulty that caregivers face in obtaining these services. It's not always easy to locate, not to mention pay for these services. Do I need to mention the health care mess the Unites States still needs to sort out? Lawmakers have been trying to improve the system in the U.S. for eons. Healthcare in general is still a top platform issue for U.S. political candidates.

Most insurance agencies in the United States will not pay for services when autism is listed as the reason for need of a service. That is why the Autism Society of Michigan formed the A.C.T.I.O.N. coalition. Their goal is to get legislation passed that will require insurance to pay for services for individuals with autism. My family may have benefited from such a law three years ago when I asked my insurance agency whether or not it would help pay for $300 a month Play Therapy for my son. The agency said no, so we passed on the Play Therapy option.

Fortunately, an individual in the United States (or at least Michigan) can receive therapies from the public school system until 26 (that is if a student is recognized by the school system as having autism which is a whole other story.) Unfortunately, we have nothing else in place (in terms of legislation) for individuals 26 years and older.

At least some health care professionals recognize the need. That is a start. Here is a list of therapies, techniques and training that the North Shore - Long Island Jewish Health System suggests for adults with autism:

"1. Social skills training and refinement of skills; Speech and language development.

2. Ongoing support for individuals via psychological and psychotherapeutic interventions is indicated. The type of support required depends on the ability to communicate and the degree of psychological mindedness and relatedness; Family supports are essential during these periods.

3. The use of techniques such as formal social skills curricula and social stories to understand emotions and recognize the topography of other people’s emotional states in relation to specific situations can be helpful; Evaluation of sexual knowledge is indicated. Educational and counseling when appropriate should be provided.

4. Placement into day programs or vocational opportunities must be based on the individual’s strengths; Programming will need to be individualized as much as possible; Structured settings with fixed routines are preferable.

5. People with autism will often have sensory sensitivities that interfere with their functioning; there are interventions that can help them, which include desensitization procedures.

6. Provide Cognitive Behavioral Therapy as needed; Shape alternative adaptive skills associated with stereotypic movements; Negotiate/Shape new routines that can be tolerated over time; Prepare the individual for significant changes in daily routine.

7. Psychiatric and psychological evaluations are helpful; Judicious use of psychotropic medications is indicated;
Cognitive-behavioral therapy and psychotherapy must be paired with psychiatric interventions; Family programs based on coping and modifying behavior are often needed; External supports including respite and crisis intervention programs are available in emergencies. "

© North Shore - Long Island Jewish Health System

About the North Shore - Long Island Jewish Health System:

  • Nation's third-largest, non-profit, secular healthcare system (based on number of beds)
  • Nation's 16th largest healthcare network, based on net patient revenue, and the largest in New York State
  • Service area of 5.2 million people in Long Island, Queens and Staten Island
  • Recipient of Joint Commission on Accreditation of Healthcare Organizations (JCAHO) Codman Award, the first health system to attain this distinction.

Tuesday, February 19, 2008

National Autistic Society: Adults Need More Support

The results of a survey by the National Autistic Society in England are at the end of this post. Frankly, the results are a bit disturbing, although I am not shocked. I have had comments on my blog and have seen comments on other sites that infer that there aren't enough services for adults on the spectrum. Many (but not all) children in schools are currently receiving services and there are many programs springing up that support youngsters with Autism Spectrum Disorder such as the summer arts and music camp my son attends.

However, autistic adults living with parents, caregivers or struggling on their own seem to face a general lack of support. Many older adults, especially those with higher functioning autism, have not yet received a diagnosis of ASD or received the diagnosis just within the last five years as awareness of autism has increased. Hopefully as autism awareness and advocacy spreads, so will support. Unfortunately, in the meantime, there are many individuals out there in need of help.

There are programs specifically for adults such as Bittersweet Farms located in Northwest Ohio. Bittersweet farms, inspired by a similar model in England, has twenty residents who farm, work with animals, machinery, etc. They have a waiting list. It's too there aren't more residential opportunities such as this one available to adults on the spectrum.

Below are the results of a survey conducted by the United Kingdom's National Autistic Society :
  • 63% of adults with autism do not have enough support to meet their needs.
  • 60% of parents say that a lack of support has resulted in their son or daughter having higher support needs in the long term.
  • A third of adults (33%) say they have experienced severe mental health difficulties because of a lack of support.
  • Over 60% of adults with Asperger syndrome or high-functioning autism have struggled to receive support from their local authority and/or health service. Of these, 52% were told that they do not fit easily into mental health or learning disability services.
  • 61% of adults rely on their families for financial support and 40% live at home with their parents.
  • 92% of parents are worried about their son's or daughter's future when they are no longer able to support them.

Monday, February 18, 2008

Farewell Tribute to my Beloved Aunt with a Special Needs Son

Photo: My Aunt Bessie, then 92, with her son Max at a seventh birthday party (at a park in Ohio) for her great nephew, my son (who is now 9). The photo was taken by me on August 17, 2005. She had a bruised hip that was bothering at the time, but she attended anyway.

My Aunt Bessie died 1 a.m. Thursday morning at the age of 94 and a little bit of my heart went with her. We had a special relationship--my aunt and I. She was 58 years older than me, but that didn't matter. My mom used to take me to her sister's house in the country on New Year's Eve where I would spend the night with my aunt and her son Max, who had cerebral palsy, (but who also displayed signs not unlike autism.)

My aunt and I exchanged New Year's gifts for as long as I can remember. It would always be something small like maybe a calendar, some candy and a small car for her and Max respectively and a kitchen towel with a cat motif for me as well as home-baked cookies. When I was younger and single, I'd receive a handmade ornament. I still hang every one of those ornaments on my tree.

Every September I'd get a birthday card from her without fail. Aunt Bess even sent me one for my last b-day--with a handwritten note. She was always a sharp lady who knew how to delay our departure by pulling out a photo or a plate of cookies. My husband and I could always count of seeing her face as she peered out from a window in her door and waved at us as we pulled out of her driveway.

Her son was born at home about seventy two years ago in early August with some complications. His dad died back in 1975 when I was four. I heard that he was a strapping athlete who needed to come to terms with having a special needs son.

Aunt Bessie never talked much about being a mother to a person with special needs. However, when I mentioned how my own son with autism would make me fear for his safety when he ran down the street, she said "well, at least he can run."

Max is a small guy--less than five feet tall and very thin (almost fragile looking.) His most astounding feature is a full head of black hair. There's hardly any gray to be seen. I do not think he's had a lot to worry about in his lifetime--thanks to excellent care from my aunt. One wouldn't know he is in his seventies--a full-fledged senior citizen.

He's a sweet guy who wears bib overalls and scoots on the floor on his bottom when he doesn't have something nearby to grab on to while walking. He's also good at maneuvering a wheel chair with his feet. Eye contact has always been hard for my cousin. He also has a tendency to repeat things. However, people really like him and the staff at his nursing home calls him Mr. Max. Talking to him is easy once you learn his ways.

"When's your birthday?" Max often asks me.

"You know when my birthday is!" I'd reply. When is it?"

"It's in September," he'd say with a smile.

"That's right!"

Ten minutes or so later we might repeat the conversation. I think he always remembered what we had already talked about. He just couldn't think of anything else to say, but had to say something because he loves to talk and be acknowledged. Sometimes he'd change the question and ask what car I drove. He's all about birthdays, cars, and watching football. My favorite part about Max was that he used to call me Princess Firefly when I was little. I still don't know why, but for a brief period in my life I enjoyed being called a princess.

Up until recently Max has been with his mom for his whole life. She took great care of him during an era where some people with special needs were sent to institutions. Not my cousin. He went everywhere with my aunt--to church, to McDonalds (his favorite) and to our house when my aunt came to visit. He always wanted me to help him in and out of the house and I would--with pleasure. It was always an honor to help Max as he held on to my arm as we slowly made our way to our destination. He always walks stiffly and probably is in constant pain, but he never has complained.

The two of them lived at home until a few years ago when my aunt's failing health dictated that they had to move to an assisted care facility--much to her chagrin. Her troubles started in the fall when she fell and broke her hip which often is not a good sign for the elderly. My last Christmas card from her was signed by one of her three adult granddaughters. Her daughter had put in a note saying my aunt wasn't rebounding from a recent set-back. For a short time during the holidays, she was in a nursing home separate from where her son was staying. I heard they moved her back with her son after I received the card, so I thought she was doing better by the time Christmas arrived.

However, when I arrived with husband and boys in tow for a visit just after Christmas, she wasn't in their apartment. I asked Max where she was but he couldn't or wouldn't tell me. Fortunately the mystery was solved when his sister (my cousin) came in and told me my aunt was in the hospital. My aunt had suffered another stroke. Her family began a round the clock vigil so she wouldn't be alone when she passed on. My family left the assisted care living facility and returned to my in-laws who live in the same county in Ohio. (We were visiting from Mt. Pleasant Michigan). Then I drove back to the county hospital, told Aunt Bessie I loved her and basically said my goodbye. I spent the rest of the evening at my in-laws with a wine glass in hand-- nursing a heavy heart.

I expected my aunt to leave us by New Years Day. She hung on (in quite a bit of pain) for six or seven weeks longer. Why? Was she worried about her son? Or was she just waiting for the right time? Whatever the case, she showed a lot of spunk by hanging in there for so long.

My aunt was 94 when she died, but there was something comforting about knowing that she was still in the world with me. She held on longer than anyone in her large family. The second child of nine; she was the last to go. She was especially close to the three youngest girls in her family. One of them was my mom. They all died before she did of natural causes. My one aunt (66) died in 1987; my mom (69) died in June of 1996 and my other aunt who was 75 died around Christmas time that same year.

My grandma and grandpa (mom's parents) only lived until their mid sixties. They died before I was born. Two of their girls died as infants and one son died at age 12 in a hunting accident. Their other two sons died in their fifties. My aunt far exceeded the average age of death in her family. I think she kept going for her son. She must have worried what would happen to him, although she never spoke of her fears.

Max is doing OK. People doted over him at the funeral home and he soaked up the attention. He wasn't stimming as I've seen him do (constant repetition of the same phrase) when stressed. He seemed calm and at peace. I guess he's had time to transition while she was in a nursing home away from him. She used to hover over him and correct him all the time, so maybe he started to enjoy some freedom. Anyway, he has his sister and plenty of nieces and nephews to look after him. He's a beloved family member who will continue to be looked after by doting relatives.

As for my aunt, I do know that she found it a bit lonely at the top. She didn't like being down the hall from the nursing facility where a friend younger than her was dealing with Alzheimer's disease. Most of my aunt's generation has passed on during the last two decades. She once looked at the paper while I visited her and said "well, I'm not in the obituaries, I must still be alive." I suppose finally making page 2 of her local paper on Friday and Saturday was a bit of a relief for her weary soul. I, however, will miss her terribly. Rest in Peace Aunt Bessie.

Saturday, February 16, 2008

Autism: the Musical Premiering March 25 on HBO

In just a few weeks HBO will be showing Autism: The Musical. I think that's great because the documentary looks like it displays the abililites of kids who have autism in a positive manner. If you click on the link you will a see a promo poster of five kids being kids. Three are smiling, one looks thoughtful and another is doing something goofy that any adolescent of that age might do for the camera. Just looking at the photo one might think these children just potraying someone who is on the spectrum.

However, all five (one girl and four boys) have Autism Spectrum Disorder. Autism: the Musical is a documentary about these kids putting on a musical.

The announcement reminds me of another documentary called Yellow Brick Road, which was also shown on HBO. That documentary was also shown on cable and was about a group of individuals with various challenges who put on the Wizard of OZ. Every person who wanted to be in the production was given a part of some kind and that was inspiring. That production, despite the unreliablility of one of the principal players, was a success and so was the documentary.

According to the HBO website, "Yellow Brick Road Chronicles the heartwarming efforts of a Long Island based organization called A.N.C.H.O.R. (Answering the Needs of Citizens with Handicaps through Organized Recreation) as they mount a performance of The Wizard of Oz. Rising to the occasion, the cast exudes a sense of wonder, enthusiasm and dedication that reveals the positive impact of community-based efforts to bring joy and purpose to people living with disabilities. "

Anyway, I hope that Autism: The Musical is just as inspiring. I will definitely put this on my calendar. Hopefully, this documentary will not be disappointing.

About Autism the Musical from the official site:

"Following five Los Angeles children over the course of six months, director Tricia Regan captures the struggles and triumphs of their family lives and observes how this musical production gives these performers a comfort zone in which they can explore their creative sides.

Both on and off stage, AUTISM: THE MUSICAL is a call-to-arms, bringing attention to a modern-day epidemic, all the while celebrating the way the human spirit can overcome any challenge. AUTISM: THE MUSICAL will be premiering on HBO Tuesday March 25th with a DVD release to follow. "

Friday, February 15, 2008

Autism Mom: Does What Come Up Have to Come Down?

What went up last evening came back down this morning. Yesterday, I collected the candy and cards my boys received for Valentines Day and put them up in the cupboard. This morning, however, I discovered that the candy and cards came down and into the hands of my boys. I forgot to lock up the snack cupboard, so I guess they thought it was a free for all.

After getting dressed to take the older one to school, I checked on my nine year old and five year old sons. They were in the older son's bed room. The booty was on the bed and each had some candy in their hands. Both were looking at the cards that they had spread across my son’s blue striped comforter.

Needless to say, I had some trouble from both in terms of getting them away from their bounty. I had twenty minutes to give them breakfast, get them both to put on their snow things and then deliver my second grader (yep, he's a bit behind for his age) to school. We had no time to waste.

We did end up a little bit late (five minutes at the most). While my school boy put his things in his locker, I took my little one in with me to explain to the teacher why we were late and to warn her that he might be on a sugar high. She just laughed.

Being a little late was our bad news and that was just a slight annoyance. The good news is that the principal stopped us on our trek down the hallway to my son's locker.

He had wanted to tell me that he heard that my guy (who is on the autism spectrum) did really well at the school's talent show audition yesterday. I smiled and said "yes he did!" We were both acknowledging that my son will be performing in the school talent show on February 28 with some of his neuro-typical classmates.

The principal may have been motivated by my anxious little email I sent to both him and teacher in charge about giving my guy a chance. You see, my son sings a little off key, so I felt it necessary to explain that his act would be campy and fun by nature. I also wrote that my guy has been singing his Froggy song to everyone he knows since July.

What I should have done was give everyone the benefit of the doubt and just have faith that everything would be OK. But no, I played the part of the anxious mama hen looking out for her little chick. I suppose that my emails weren't necessary.

However, I wanted to do everything I could to ensure my son's success. What was necessary was an explanation with a social story of what an audition is. I felt like Shirley (Black) Temple's mom saying "Sparkle! Sparkle! Sparkle! when I told my son he should perform with a smile and show how much fun he has while singing his favorite song. I also explained that not everyone who tried out for the show would get chosen. Well, I'm happy to say my son performed beautifully and received a paper saying that he was in and that he did a nice job.

His recent success is a sign that my son and the rest of my family (despite some anxiety on my part) is up in a good place. I'm hoping that we stay there for awhile. I'd even be OK with being in a neutral spot, the best place to be according to the late philosopher Joseph Campbell. Of course I wouldn't be me if I didn't worry about what might happen in the future. Maybe all I need is a little faith...

Thursday, February 14, 2008

A Thought on Feb. 13 From My Son with Autism: "It's Valentine's Day Eve!!"

"It's Valentine's Day Eve!," my guy with autism declared yesterday.

'Ok, that's a new one,' I thought. However, he did have a point, because like Christmas there is planning and work to be done the day before in regards to February 14.

Shopping is probably the number one task for most adults. My husband and I helped our boys buy the cards for to give to their classmates at school well in advance. However, both he and I did the rest of our shopping (separately, of course) yesterday. Two stores that I visited to buy Valentines Day and birthday stuff for my husband were quite crowded--especially the aisles with the Valentine's Day merchandise and cards.

The main job for our kids was to sign cards for everyone in their respective classes. My oldest son had an extra amount to sign. He attends both a regular second grade class and a special education class. He had to take care of a total of 42 cards. He grew tired, so I helped out with twelve of them. My younger son, 5, (whose preschool party was yesterday) one signed about half (seven) of his before whining enough for me to get exasperated and finish them myself.

Anyway, if you didn't notice, my guy with autism gets excited about holidays and birthdays. I think he gets that from my mom who died 11 years ago. She lived for the holidays and so does my son. She would be proud. As for him, he'll have great fun today at his Valentine's Day party in school. I don't know if he'll be able to attend the parties for both classes, but he would if he could.

Card companies might want to take notice of my kid who would make a great employee when he grows up. He has a lot ideas and excitement to offer, which would probably make Hallmark or other card giant a lot of extra money. Adding one more day to Valentine's Day in the term's of Valentine's Day Eve may help those card companies as well as candy and toy makers stay in the black.

Stores would love it because people would have to start shopping earlier--February 12 for most of us. Grocery stores and restaurants would profit to because Valentines Day Eve would mean people would want to have a special meal on the night of Feb. 13 as well as Feb. 14.

Adding an extra day to this February holiday would give Cupid about just as much repsonsibility as Santa Claus. I could see Cupid in his fictional form loving it because his iconic status would grow. He could deliver presents if he wanted to on the night before--just like the jolly old elf. Where would cupid leave the gifts? I don't know, but there's a potential moneymaker right there. Our poor wallets.

The words "Happy Valentine's Day Eve" is cute coming from a kid, but I think most people (especially singles!) would be happy to pass on the chance to celebrate the night before. I know I would--especially because my husband's birthday falls on Feb. 13 and I have to shop and prepare for that day as well as for Feb. 14. So my preference is to keep the official holiday to one 24-hour period.
Happy Valentine's Day!!

Wednesday, February 13, 2008

2008 Birthday Tribute to Autism Dad

Three decades ago plus a few years and then some, my in-laws received a Valentines Day gift one day early in the form of a beautiful, blue-eyed baby boy. This baby grew up to be a wonderful father and husband (twelve years and counting). He was born on Friday the 13th which is fitting for him. He's not scary. He just has quirky interests as well as a quirky sense of humor. He loves Bigfoot lore, football, soccer, and teasing his boys and the college students who work in his department at the library on our local campus.

Is the CMU (aka the Chippewas) cheer "Let's go fire up Cheeseburgers!"? Or is it "Let's Go Fire Up Chips!"? He has teased the boys so much with that one that he no longer gets a reaction from them. As for the college students, do student workers at the library really get paid time and a half for working on Groundhogs Day (February 2)? Needless to say, he loves it when new hires come in, so he can recycle his old jokes.

As for me, I have gotten used to him saying "that's free if it doesn't scan" or "don't forget the librarian discount!" whenever we check out at a restaurant or store. The only success he has with those statements is getting a variety of reactions from service employees (from puzzlement to wise-in-the-ways laughter) and an eye roll and snarky comment from me. As far as I know he has yet to receive a librarian discount.

I rarely fall for one of his stories anymore (although when we first started dating, I fell for them all the time). Now his coworkers look to me if they don't quite believe something while I'm there. They can count on me (most of the time) to deny or confirm a story-- much to his chagrin. His stories are harmless and in good fun. He tells the truth when when it comes to important topics. One just has to get used to him.

As he said last night when talking about our family: "we are all quirky." He's the perfect fit in our immediate family "puzzle" of four people and two cats. We're made up of both Aspergian(s) and Quirkians. Happy Birthday Honey.

Tuesday, February 12, 2008

A Spontaneous Autism Awareness Walk in Canada--During Winter!

I wrote a post on January 26 about how quirky awareness stunts (Q.A.S.'s) can be used to promote awareness of certain causes. In that post, my main example was a basketball coach who went shoeless for an entire game. He wanted to inspire the donation of shoes to a charity so that people in Cameroon (Africa) could benefit from his action.

In that same post I pondered if a mere parent could do something quirkily similar to promote autism awareness and possibly raise funds for the cause. In the back of my mind I was thinking about taking a walk from one side of the lower penninsula of Michigan to another (from Lake Michigan to Lake Huron). My hypothetical walk would have been in the summer and well planned out to make sure arrangements were made for the care of my children. I would have also have gotten spousal approval. This would have taken me months to plan.

Well, someone went beyond my wildest expectations (it is highly unlikely he was inspired by my 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. She also has posted at least one picture (sent too her from someone who used their mobile phone to capture the photo).

I haven't seen her Facebook site, but did find her announcements and updates on Autism Connects. According to her most recent update on Sunday, February 10, she was going to join him for the last leg of the walk from Welllington Avenue up onto Parliament Hill, in Ottawa, the Capitol of Canada, between 11:00 to 11:30 AM yesterday, Feb 11.

It looked like Mr. Marinoiu was going to arrive at the Capitol in time for a Autism Class Action Lawsuit at the Court of Appeal for Ontario. In a February 6 update Lia reported that Canadian Senator Jim Munson wanted to speak with her father.

Some words from an update from Ms. Marinouiu:

"I would also like to let everyone know that there is an Autism Class Action Lawsuit at the Court of Appeal for Ontario. I ENCOURAGE ALL parents (my mother will be attending) to attend this appeal hearing this upcoming monday february 11th!More information can be found on the discussion board!I would also like to let everyone know that my family was part of the Wynberg case that lost in 2004.The Provincial Government spent MILLIONS of dollars to fight the families of autistic children.Instead they could have used this money to assist these families.Taline Sagharian and I would appreciate all your support in this upcoming hearing!Keep me posted with any other information..."

My thoughts: I'll provide an update about the hearing sometime in the near future. Hopefully, I'll also get a map up on this post soon. I'd appreciate comments from Canadians with knowledge and/or opinions about this lawsuit. Opinions from everyone else about this awareness stunt are most welcome too--as always. Anyway, I suppose this guy makes my imagined summer trek across Michigan look pretty wimpy in comparison.

Feb 13 Update: I found her Facebook group and joined it. According to her Feb 12 post, her family received a lot of attention in Ottawa. Her words:

"Greetings from Ottawa!This morning, we held a press conference in the Centre Block of Parliament Hill. In attendace was: The Honourable Senator Jim Munson, MP Andy Scott, another MP(I cannot remember his name), and MP Mike Lake.The Press Conference went well. Senator Jim Munson & Andy Scott showed extreme support, along with Mr.Lake.We will be leaving tomorrow on the train #45 from Ottawa to Toronto. The Train is scheduled to arrive in Toronto at 4:35 PM.(VIA RAIL - Union Station)We would appreciate the attendance of the Toronto Autism Community and Supporters of my father as he arrives if possible. We want to make this homecoming for my father BIG, so that not only the Ottawa media will be the ones to pick up this story.THANK YOU ALL SO MUCH, but it is NOT OVER. There may be an election coming up soon, so please stay in this group to learn more about the 2% Strategy. I can't wait to come home!"

Monday, February 11, 2008

My Son with ASD: On Getting Older

I can always count on a little bit of realism from my nine year old. Here are two recent examples.

My son: "When I grow up I can buy all the ice cream, cottage cheese and yogurt I want."

My husband: "Well, if you really want to do that when you get older, you can."

Explanation: Eliminating most milk products from his diet seemed to reduce his asthmatic symptoms and also reduced behavioral problems.

My Son: "When you get older, you're gonna die!"

Explanation: He added this little tidbit when wishing his babysitter a happy birthday. She just turned 23. "K" just laughed. She's kind of used to him because she's been our main babysitter for almost two years.

Note: My guy can usually be counted on for the truth. At least when he saw me with my first pair of glasses last night (a definite sign of getting older), he said I looked good. It's nice because with the few pounds I gained from not being to get out for my walks, I'm feeling rather unattractive. The glasses don't make me feel much better. However, rather than receive the compliment for what it was, I prodded him a little.

Me: "They look silly don't they?"

My Son: His head moved back and forth in "no" fashion.

My thoughts: Sometimes it seems that kids can be counted on more for truthful statements. I suppose people on the spectrum are more or less known for this sort of truthfulness as well. But are all individuals with ASD always truthful? My son is maturing and he often surprises me (in a good way most of the time) with the things he says and does. I wonder if he will be as truthful when he is older. If he is as truthful; will that be a good thing? Or will too much honesty get him into some trouble? Time will tell...

Sunday, February 10, 2008

Autism, a Homemade Guitar, and Dreams of Musical Success

A much loved (beat up) homemade guitar made out of 9Lives cat food box, rubber bands, thumbtacks, and glued-on number sevens and Scooby Doo pictures. The handle is a leftover piece from a cheap, assembly-required bed that we already discarded. At least we put one piece to good use. Assembly time: Forty-five minutes for prototype (shouldn't take as long if one follows directions. Finding the best possible parts took "the engineer" at least fifteen to twenty minutes.)

Music is great for kids with autism. My child on the spectrum started rocking back and forth to music at about three months of age. Even then he demonstrated a great sense of rhythm. When he was a year old he'd pound on the table or other object in beat with the music. I always thought he'd make a great drummer although recently he has shown a preference for stringed instruments.

When my son was about eighteen months old, I enrolled him in his first music class at Michigan State University Community Music School (back when we lived in Lansing) which has a focus on rhythm, patterns, etc. I had no idea he was on the spectrum, although it did not matter at the time because parents or caregivers were required to attend the class with the child.

When we moved to Mt. Pleasant, Michigan I switched over to Kindermusik because I heard about the program's emphasis on play. Also, Kindermusik had received great reviews from every parent I spoke to about it. My son was four or five years old at the time. The age appropriate class, (Imagine That! for ages 3-5), for him was of the drop-off sort. Parental involvement was only required for the last ten minutes of the 50-minute class. My child was five and although he didn't not have a formal diagnosis yet, although we were pretty sure he had autism. I called the director and explained the situation. She told me that they had worked with autistic children before and that she was willing to try.

I promised to stay outside the room in case my intervention was needed. There was only one teacher and about five kids. It was the only time we've tried something involving full inclusion outside of the special needs arena. To my surprise, he did great and needed very little help from mom. He took two more classes with Kindermusik before he aged out of Imagine That!

Anyway the guitar inspired by an assignment for the Imagine That! class (3 to 5 yrs) in Kindermusik for my youngest son (not on the spectrum), who was four at the time. We were enrolled in the local Fall, 2007 class. Kindermusik is based in the United States and Canada. It's for children ages zero to about seven.

For one of the classes my son was supposed to bring a homemade instrument. I was hoping my child would want something easy like a shaker or a drum. Those are easy to make. For a shaker one can put beans, rice, marbles, or pasta in a soup can or other container and then tape the lid back on. For a drum all one needs is an oatmeal box, coffee can or other cylinder-shaped container with a lid. Decorations are optional.

In terms of decorations, I'd recommend electrical or duct tape for the drums. Both types of tape come in many different colors. The tape holds up better than paper and the drums look great for years. (I know because I made a drum (which we still have) with electrical tape when my son on the spectrum had the same Kindermusic assignment a few years ago. Only now, that drum serves as an emergency potty in our van)

Anyway, my child requested what is probably the most challenging instrument to make. He wanted a "retair" (we're still working on the proper pronunciation). The bad news? I waited until two-hours before class to work on the assignment. The good news? I'm an avid recycler/semi-reformed pack rat who had a lot of stuff in the office and basement to work with. Somehow I managed to find everything finish the assignment and get the kid to class in an acceptable amount of time.

The hardest part was getting the rubber bands to stay in place. Paper clips work the best, although as you can see "the guitar strings" tend to go out of line a bit. Thumb tacks and tape did not work at all. I was unable to work out a quick solution to hook up the strings from top and bottom. Was lucky to get them to stay across the hole I had cut out. My little one can get a twang out of the rubber band and is quite happy with this creation. However, if anyone has a solution to this small problem, please let me know.

The rectangular 9Lives box worked great because it's colorful and has more then twenty pictures of cats. Most kids, including those on the spectrum, seem to love or relate to animals.

My dream is to have both boys participate in a band someday. A Mt. Pleasant music studio which sponsors the Kindermusik program also has a rock and roll band program for older kids. I hope that someday they both can participate. Although I don't necessarily expect them to become part of a band as big as say, KISS, I do hope that music becomes an important part of their lives.

Note: Although, I "designed" my guitar before I knew about this fellow, today's post is dedicated to John Elder Robison. He is an "Aspergian" who wrote the fantastic memoir Look Me in the Eye and maintains a blog that (in part) tracks his publicity efforts for his book. J.E.R. has inspired me to hope that my son will be successful upon adulthood. Mr. Robison also engineered guitars for KISS back when the band first became famous. His designs (one shot out rockets!)are much cooler than the one pictured on this blog.

Saturday, February 9, 2008

An Update: Organizing a Support Group

Note: This post is an update from one I wrote back in November. I was inspired by a new blogger friend who, along with her husband, is considering starting a group of their own. I hope this helps.

I have been a member of a support group for four years now. Our last meeting was November 13 and we’re hoping to meet again soon now that the holidays are over. Our group met at our local university's preschool lab room from 6 to 7:30 p.m. The student organization, Association for the Education of Young Children (AEYC) at Central Michigan University, watched the children of some of our parents for free in adjoining preschool room while five of us (four parents and a college student) chatted about life with Autism Spectrum Disorder in the family. The rooms we were using were also free of cost.

I cannot be credited with attaining the room or the free babysitting. A friend of mine who gave birth to two boys on the spectrum is the powerhouse in charge. Motivated by the need to help people she has done some serious social networking to get both the rooms and the babysitting. I met the organizer when our boys were in the same classroom.

She has a friendly demeanor and a knack for leadership. I do not consider myself to be a leader as much as a supporter, so I just try to help out when I can. I attend most of the meetings, help with the set up and lock down of the room, and volunteer to help with various planned activities. My philosophy is that if you get help, you should also give help. At the moment, the help I'll try to give is a few tips for organizing a support group.

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

2. Reach out to potential members. Note that this group can be for parents and/or individuals with ASD. A newspaper notice can be effective in attracting members, but there are other ways to inform people about the group. One could post fliers (with permission) on bulletin boards at businesses, public institutions and even doctor's offices. Word of mouth may also work. If an acquaintance mentions they know someone with ASD, then arrange for that person (or a family member) to be contacted. The acquaintance may not want to give you their friend's contact information, but they may be willing to call the person for you. Finally, attend events that people with special needs might also attend. These events may be affiliated with Special Olympics or your local Parks and Recreation Department.

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

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

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

6. Consider typing up some guidelines to discourage too much negativity. My friend did this before our very first meeting and it worked wonders in terms of keeping us all in line. She discouraged people from naming and discussing particular doctors (unless one was really good) and school officials. A list with expectations will discourage the meetings into turning into a running forum against the local education system or the medical community.

7. Hold Family Game Nights. Guys seem to be more likely to attend events such as these. Game nights are usually well attended.

8. Print up a business card with contact information. There are a lot of online businesses that one can order cards from.

9. Once organized, define who your members should be. Do you want to include parents of all special needs children or just those who have children with autism?

10. Decide whether or not you want to be a low key support group who meets informally for coffee or if you want to add education and advocacy into the mix.

11. If there is a National Organization in your country consider the possibility of forming a local chapter.
12. Once formed, it’s a good idea to set up a phone tree.
This will come in handy in case someone suddenly has a family crisis or medical emergency. These support groups have the potential to rally around a family who needs an extra amount of help and support.

13. Consider starting a lending library of books, magazines articles, etc.

14. Be Resourceful. Will your local library be willing to help you out by loaning space? Can you get the local university (if there is one your area) involved (as my group did)? Check out local government agencies if you haven't already. A parks and recreation department may have resources to help your group as well.

I hope that these tips will be helpful. I may be willing to add a tip or two if someone posts a great idea. The tips I just posted were obtained by observation. When my family moved in the area five years ago, we did not have much in the area for families who had children on the spectrum. My friend changed that by being proactive and starting her own group. As of now, we are merging with two groups from other towns to form a chapter of the Autism Society of America. We are in the final planning stages and are very excited about the possibilities that are emerging. More on this later…

Friday, February 8, 2008

Five Playtime Ideas for Young Children with Autism and Their Sibs

Here are some ideas for parents who might have one or more children on the spectrum as well as a child or two that are neuro-typical. I suppose the success of these activities depends on where all the children are in a developmental sense. My nine year old (with ASD) and my five year old (without ASD) boys like these ideas. I borrowed these pointers from the Autism Society of America Website. Feel free to visit the site to view their entire list.

1. Hide trinkets inside a ball of clay or playdough for your child to find.
(Small units of monetary change would work too!)
2. Make an art project with glitter and glue.
(Be sure to have favorite colors available!)
3. Roll and bounce your child on a large exercise ball.
(Have more than one ball on hand or you may have trouble. Also make sure the balls are the same size. Have learned from experience!)
4. Let your child wave lightweight scarves; he will enjoy seeing the colors and fabrics move.
(Dancing or moving to music with these scarves is a great idea too.)
5. Bury small prizes in a box of dried beans or rice for your child to find.
(I would avoid rice because it is a lot messier than beans. Dried pasta might be a better option as well).

Thursday, February 7, 2008

Autism: Nine Year Olds and Driving...

Once upon a time there was a nine year old who took his mom and his little brother for a little drive. He wasn't in the driver's seat. His mother wasn't either. No one was.

You see, the nine year old was upset that he had to go to school. There was a winter snowstorm coming and school was supposed to be cancelled. Only it wasn't.

The boy and his mom argued. His mom wrote a social story. No use.

The boy wrote on the calendar that he was supposed to stay home on that day. His mom erased the "h" for home and put an "s" for school. No use. The boy changed it back--and so it went.

The mom stopped arguing. She called the school secretary and told her the boy was having some trouble understanding that school was in session. The mom asked the lady to tell the principal and the boy's teacher that the boy might be making some noise when he came to school.

She packed the boy's back pack. She put on her coat, her boots, hat and gloves. Then she started the van and let it run because that is what you are supposed to do when it is cold outside. Finally, she scraped the van's windows.

The mom went inside and told the boy's little brother (already dressed to go outside) to get in the van. He did. She told his older brother to put on his coat and boots. He didn't. The mom told the boy she would wrap him up in a blanket and carry him like a baby if he didn't listen. He didn't, so she did.

The mom carried the boy to the van and put him on his seat. She put his coat and boots down beside him. The boy did not sit down. He jumped up to the front of the van. He grabbed the gear. Mom grabbed the boy.

She put the boy into the seat and had him buckle up. The boy was excited. He said he had to fix "it." Mom did not know what "it" was. Then suddenly the van started to roll--backwards.

The mom hollared and reached over to stop the van. She put it in park. She looked out the back window and saw that they could haved rolled over "Ray" their next door neighbor who was walking to work. The neighbor was her husband's coworker. She had a feeling that her husband would be hearing the story soon and not from her.

And that was the story about how the nine year old took his family for a little drive. It lasted five seconds. They went ten feet--if that. The drive was short. The memory will last longer...

The mom's little boy with autism did not make National News for his driving stunt, but there was a nine year old that did. He made International news by driving himself and his mom through three lanes of traffic during rush hour. Only that boy saved their lives. Our drive wasn't that great...

Epilogue: The mom of the non-heroic driver thought he might have a terrible day at school, but he didn't. His teacher said the visual schedule at school worked and that the boy actually had a pretty good day.

Wednesday, February 6, 2008

A Social Story for a Child with Autism

You are Going to School Today (title)

There is a two-hour delay today. (Problem Statement)
School is not canceled. (Definition)
[my son's name] will go to school. (Expectation)
This is OK. (Affirmation)
Your teacher will show you your visual schedule when you get to school. (affirmation part 2)
If you go to school, then mom and your teacher will be happy. (The result)

This is the social story that I wrote for my son with autism this morning. My rule of thumb is to keep sentences short enough to stay on one line. I've identified the basic factor elements of a social story by enclosing them in parantheses.
We've used Social Stories as a survival method for tricky moments for a few years now. He has a whole folder passed on to his new teacher from his former one. In years past they used Board Maker at school to put pictures under all the words when he couldn't read yet. Now pictures are not necessary.

My son's former teacher claimed that social stories worked wonders for him at school. They worked miracles at home too (at first), but lately I've noticed that having an authority figure other than mom write and read these stories works better for my son. That's why I was more than a little stressed when he kept saying "school is canceled" over and over again. However, through some miracle we managed to be successful with a social story and avoid a meltdown while going to school.

We also had to look at the school's cable channel where the delay or cancellation announcements are posted. He needed to see it for himself so that he would believe me when I said school was not canceled.

My son even tried to write an "h" for home on our calendar. I had been trying a visual schedule using a small "h" for home and an "s" for school to maneuver around cancellations and scheduled days off (teacher preparation days). So, after he showed me what he had done I simply crossed his mark in and put in the correct one, an "s". That worked too after some arguing between the two of us.

I also called the school and let his teacher know that a very unhappy boy in the form of my son may show up in her classroom. He heard every word and this might have helped too. He received an excellent behavior report from his teacher.

Anyway, Carol Gray created social stories as a way to teach social skills to students on the autism spectrum. Her materials on the subject (including a taped seminar on how to write social stories) are available for purchase online. I heard that she is a better speaker in person, but the tape worked for me.

Gray is a Central Michigan University graduate. The Gray Center, which helps individuals on the spectrum and their families, is located in Grand Rapids, Mi. Grand Rapids is about a two-hour drive west from Mt. Pleasant. The website has a great store with a variety of books and a journal that are related to social stories.

On a personal note: My son and I were supposed to go to Grand Rapids tomorrow to see his urologist and nephrologist, but I canceled yesterday. There is a huge storm coming that is supposed to make traveling dangerous tomorrow morning and afternoon. We can only hope that the weather improves by March 4, the date of our rescheduled appointments. I don't mind missing out on what I refer to as "kidney day", but it looks like school will be canceled again--ugh.

I wish someone would write social story for me on how to handle cabin fever. We all have it. The last two weeks have been two days at school and three at home. It's been too cold to go outside. I hope this week he'll have at least three days at school. If they miss many more days, the students will have to make them up according to state law and will be going until mid June.

Tuesday, February 5, 2008

An Autism Parent on Kathie Snow's People First Language

One person has set out to make sure to refer to people first and disabilities/disorders second. Her name is Kathie Snow. One can read the paper she wrote which defined her People First language on her website Disability is Natural. She spoke at Central Michigan University (where my husband works) last September--before the creation of this blog.

In regards to People First Language Snow writes:

"Contrary to conventional wisdom, individuals with disabilities are not:• People who suffer from the tragedy of birth defects.• Paraplegic heroes who struggle to become normal again.• Victims who fight to overcome their challenges.
Nor are they the retarded, autistic, blind, deaf, learning disabled, etc.—ad nauseam!

They are people: moms and dads; sons and daughters; employees and employers; friends and neighbors; students and teachers; scientists, reporters, doctors, actors, presidents, and more. People with disabilities are people, first..."

Anyway People First Language is the reason why I always refer to "individuals with autism" on this blog rather than write "autistic individual." I have to credit Ms. Snow and a little bit of peer pressure for choosing the words that I do in terms of autism. We talked about People First Language in my parent group long before the afore-mentioned advocate visited our campus. The organizer of our group brings up this principle when a certain someone forgets and says autistic when referring to, yes, "an individual with autism."

People First Language is hard for me to adapt to because in my journalism classes I was trained to be concise. We had exercises where we would cross out words to make sentences shorter. Writing "my son with autism" is only one more word than the other way, so that is one reason that I make this concession.

However, did you notice how I referred to myself in the title? If I used Snow's method I'd have to write "a parent who has a child with autism" rather than "autism parent." That's a six word difference. My long title for this post would be book-length if I did it the other way. Besides, I don't mind being called an autism parent. I am sincere when I say I don't think that I'm degrading myself.

A part of me wonders if this People First business isn't just a bunch of politically correct gobbley gook. I suppose it does sound nicer to write "individual with mental retardation" rather than "mentally retarded individual" because the word "retard" and "retarded" has been used in a degrading way in the both past-- and at times in the present.

But what about the word autistic? Has that ever been used in a degrading way? I don't think of the word autistic as being one that degrades someone. Maybe it's just a personal quirk of mine, but I actually like the way the word autistic sounds. The sound "ism" in the "a" word isn't as appealing to me as "istic."

Also, have you noticed that some people with Asperger's Syndrome refer to themselves as Aspergians or Aspies? That's not using People First Language. That's taking on autism as an identity and doing so with a certain amount of pride. Is there anything wrong with that?

Of course using the term Aspergian or Aspie does kind of defy the "autism doesn't define me" statement which seems to be popular in some circles. However, to some individuals being autistic defines them in the same way as having green eyes or brown hair can define a person. Is it Ok to say I'm the proud mom of a blue-eyed boy and/or a hazel-eyed boy? Or do I have to write "one boy with blue eyes and one boy with hazel eyes?"

I wish I could just defy the People First language altogether and write the word autistic all the time, but I can't. Why? Because I have a dear friend who has adapted this principle with her whole heart and soul. If I start writing the word autistic, I'll start saying it too because I'm the absent-minded professor sort without the degree or profession. Do I need or want to create that kind of tension between this friend and I? No. So I'll just have to continue writing "person with autism."

Maybe someday I can convince her that using "People First Language" is a personal choice and that one shouldn't begrudge someone if they choose not to use it and vice versa. However, for reasons I cannot go into, now is not the time to bring that topic up. (Of course, there is a chance she'll read this and if that is the case I hope she doesn't get too upset at me).

In the meantime, I will go out on a limb a bit and use the term autism parent. It's just more practical. What do you think?

Monday, February 4, 2008

2008 Super Bowl Party Boys

They were the kitchen helpers, the greeters, the photographers, the Scrabble assistants (drawing tiles) and the entertainers. They were my boys.

Our Super Bowl parties are potluck style. Year after year people ask what they can bring, so we tell them. This year we were lucky to receive many great dishes: Bombay bowl (spicy garbanzo bean salad from my Indian friend), a tossed salad with cilantro dressing, deli olives, a bottle of merlot from a company called Penguin Feet, the stickiest, most delicious, homemade brownies ever, and a yummy chocolate cream pie from the Great Traverse Pie Company (based in Traverse City, MI). Librarians are notorious chocolate lovers...

We served a vegetarian "to die for chili" (previously made up name) which is actually a casserole made with corn chips, chili beans, kidney beans, frozen corn, green chilies, black olives, salsa and cheese. It's a simple dish that requires much dumping from cans--perfect for kids. My older son loves to help with these types of dishes. He poured in all the beans and the diced green chilies. He even spread the ingredients out with a spoon so that they covered the entire casserole. He also helped me by opening and closing the oven door and by turning on the oven light. The little guy helped some too, although not as much as his older brother.

We had five guests in all and my two boys greeted every single one at the door with equal enthusiam (aka smiling and jumping around).

"Oh the first guest is here!"

"Two more are coming, now we have three!" You get the idea...

I bought a disposable camera for the occasion. We've gone through three digital ones already, so it's more practical for us to buy disposables. They might be more expensive in the long run, but we never have to worry about breakages.
As for the good news, our guests were good sports when my son with autism took photos of all them at close range. The bad news is that he nearly blinded them all with the flash. The guests also expressed disinterest in seeing the results. I guess when one reaches a certain age, the idea of looking at a close up of ones self is not very pleasant. My five year old took a few photos too, but fortunately his range is further than one and half or two feet.

Three guests joined me for Scrabble. Out of the four players, only one really cared about the football game (it wasn't me). The boys, of course, wanted to play too. Two of us (me included) agreed to let each of them assist us. They helped by drawing tiles. The oldest one kept wanted to peer into the bag, but we managed to get him to close his eyes. His expression was pretty cute as he squeezed his eyes shut. The little one did pretty well too. They did lose interest after a while though. I think that was about the time the sugar from the two pieces of pie and two brownies started to course through their small bodies.

I'm not sure how the boys came up with the idea, but they decided to have a talent show. We have kept all the costumes from Halloweens past for playing dress up. A wizard hat happens to be in the mix. The little guy put some of his favorite small toys in and "magically" pulled them out. They also took turns "disappearing" and "reapperaing" from underneath the card table covered with a lime green, plastic table cloth. My husband and I weren't nearly as amused as our guests. We didn't want the boys to distract too much attention from the game.

Alas, though, their 8:30 p.m. bedtime came before the game ended around 9:35 p.m. My one friend hummed the goodnight song from The Sound of Music as the two boys sincerely expressed their goodnights. The three of us then headed up the stairs. The boys settled down easily considering all the sugar that must have been still lingering in their system.

"That was the best Super Bowl Party ever!" my nine year old exclaimed as I kissed his forehead.

P.S. The Giants narrowly defeated The Patriots. My husband is calling the game a classic, although I wouldn't know...

Sunday, February 3, 2008

Special Olympics Bowling Update

Today's practice bowling session for Special Olympics in Mt. Pleasant was held from 10 a.m. to 12 p.m. My guys both improved from last week. My nine year old scored a 45 (up from 26) and my husband scored an 86 (up from 79). So far the bowling method for the smaller guy is to place the ball on the lane and let it roll, although my husband said our kid tried to throw it a few times. He does have the ability to at least try and imitate what others are doing, so hopefully someday he'll be able to bowl using the standard method.

I am proud to say that my athlete's behavior was excellent. My husband spelled out the expectations and that helped a lot. Bathroom trips, arguing, and running around in general was minimized. Today he sat quiety in his chair and waited for his turn, which is a very important social skill to learn. We do feel blessed he has this opportunity to get out and learn about athletics and sportsmanship in general.

Where was I? Cleaning up our house for tonight's Super Bowl Party. We'll have a bunch of librarians here watching the Super Bowl. That sounds a little strange doesn't it? Only a few of them will actually be watching the game; some of them will be playing Scrabble with me.

Where was the five year old? Watching Scooby Doo, his favorite cartoon. I'm not sure how he'll do tonight. He doesn't like football at all and he's a bit young for Scrabble.

The older one has started to say football is his favorite sport. He also loves the part where they sing the American National Anthem at the beginning. He knows almost all the words to the Star Spangled Banner.

Saturday, February 2, 2008

High School Senior: "Be Aware of Autism and Act Kindly"

Newsday publishes a weekly column called "New Voices." The column features nonfiction essays by writers who are in middle school, high school and college. One of Newsday's newest voices, Michelle Kurtz, wrote about autism awareness and being nice to fellow students who may have autism. As a parent I appreciate her essay. While the realist in me acknowledges that we have a ways to go before students with autism are no longer bullied in school, I also know that there are some outstanding compassionate individuals out there looking after our kids.

Ms. Kurtz's last paragraph:

"No one should be the victim of someone else's jokes, especially a person who may not fully understand the remarks. With awareness and kindness, people can blend, improving each other's deficits and highlighting each other's accomplishments."

My Thoughts: This dates me, but when I was in high school autism only became a topic of interest when the now infamous film Rain Man hit the theaters. I remember a fellow student giving a report on what was then called "autistic savants." No one knew about autism in general because everyone with the condition in our district was hidden away. There was a special education school in our county that all kids with special needs attended.

Autism, as I've come to know it as a parent, wasn't talked about--not in the report and not in general. Essays such as Kurtz's make me glad that I'm raising a son with autism now rather than ten, fifteen, or twenty years ago. Hopefully, as Ms. Kurtz urges, individuals like my son will be more likely to be treated with kindness and respect in middle school and high school as autism awareness increases.

Friday, February 1, 2008

Cardboard Ingenuity

It's not uncommon for people with autism to become known for creative genius. They view the world differently than the rest of us, so sometimes it seems that individuals with ASD are the only ones equipped to solve certain problems. Maybe in this scenario a neuro-typical kid could have solved the same problem, but still I couldn't help but be impressed when my nine year old with autism thought "outside of the box" to get into one.

Every time we get a package of some kind, my five year old claims the box. He can spend hours painting, decorating and just playing inside of the box. The big boxes become clubhouses. I keep them around for a time and then they just disappear. My little guy knows what happens to those boxes, which means I always have some explaining to do.

I was dubious about his latest prize and his hope that it would be come the next clubhouse. The box was made to hold artwork. While it might be about three feet high, it was only two inches wide.

"There is no way you can make a clubhouse out of this," I said after both boys helped me get the painting out of the box by holding on to the other end.

They were insistent, however, that this skinny box would make a suitable dwelling. My nine year old was especially adamant. 'I guess he really does belong in special education," I thought with a sigh.

The only possibility I saw was a box with two parallel windows so that they could crawl through the hole. There was no way they could get their little bodies into that narrow box. Or so I thought.

My little one showed me where to cut. I used a steak knife to carve out two rudimentary windows and then went upstairs to sort laundry. When I came downstairs with a basket of dirty clothes, there was a surprise standing up in the middle of the living room--a clubhouse.

"Who did that?" I asked my five year old.

"He did," my son replied nodding towards his brother.

The clubhouse wasn't the rectangular sort that I used to make with my friends out of the huge boxes that we were known to beg from the local furniture store.

Instead, what I saw was a cardboard tent. My son took off the bottom of the box and separated the sides so that there was a big enough space for both him and his brother.

Later he surprised me some more by folding out a couple of inches of the bottom of one side to make "a front porch." He also initiated the making of a sign that the boys taped to their dwelling.
What did the sign say? Home Sweet Home.
My son has been surprising me a lot to the point I probably should not be surprised anymore. I guess I had no idea he had spatial ability. Usually his blocks and legos do not get played with unless his little brother gets them out. Experiments with three-dimensional projects are brand new for him. I'm not sure from whom my guy received his skill to transform 3-d objects. It certainly wasn't me...

Eli Stone and Autism: New Show Explores Vaccine Issue

Eli Stone, a brand new television show on ABC debuted this evening. My husband and I were surprised that autism was a central focus on tonight's show. The new series is about a lawyer, Eli Stone, who is diagnosed with an aneurysm in his brain. Apparently the aneurysm causes him to have hallucinations. But is it the aneurysm causing hallucinations? Or has God chosen the main character to be a prophet? That's the larger arc that will most likely be carried on throughout the series.

The question is: what is motivating Eli Stone to take on certain cases? Tonight the featured story was about a woman (who Stone happened to have lost his virginity to years before the present) who has a son with autism. The woman is convinced that her son became autistic after getting injected with the flu vaccine. Sound familiar? Yep, she believed that a preservative similar to what we know as thimerosal caused the autism in her son.

What's interesting here is that the boy is the one who convinced Stone to take the case. He spelled out a phrase which was related to George Michael who was featured during Stone's first hallucination which had the singer performing the key song. That clinched it for Stone. He took on the case and won without presenting a whole lot of evidence. The mom was awarded a couple of million dollars and the company agreed to remove the substance in question.

It's very possible the mom and son will be back because the mom was established as Stone's former flame. Will the flame be lit again? Who knows? But it's very possible that autism and the issues surrounding this disorder will reappear on this series.

This has the potential to be a very controversial show in the autism community. Stay tuned...

P.S. Yep, the controversary has begun. The American Academy of Pediatrics (AAP) is furious and maybe rightly so.
One news article titled "ABC series may perpetuate autism myths:
A medical group wants to pull the plug on Eli Stone, saying the show's storyline feeds vaccine fears"
discusses the wrath that Eli Stone has attracted from the AAP.

Further, other bloggers are unhappy with Eli Stones' treatment of autism in general. I say wait and see. Maybe things will get better on this show in regards to the treatment of autism.