Tuesday, July 29, 2008

Kidneys, my two sons and an old fear erased

Explaining the Illustration: Most of us are born with two kidneys as seen above. However, according to the National Kidney Foundation, one out of 750 people are born with a single kidney. This is more common in males with the left kidney being the one more often absent. Our oldest son, who is almost ten, was diagnosed with this condition two years ago.
The Story
A nagging fear that has been in the back of my mind for almost two years was erased yesterday by the wand of a sonographer at a local hospital. Since September 27, 2006, I've had this foggy memory of a long ago conversation with a sonographer who was perfoming the standard second-term ultrasound for one of my pregnancies.
"I only see one kidney. Do you either of you have a history of this in your family?" she asked my husband and I.
"No," I said, not expecting that question at all. My husband agreed that we didn't have a history of single kidneys in the family.
"It must be how the baby is positioned then," she said.

'Yes, it must be that," I thought.

And that was the end of the topic until eight years later (on the very day noted above) when a pediatric specialist told me that our eldest son had a single kidney, dysplasia, and renal reflux. I was by myself with my son, two hours from home when I heard the news from the pediatric nephrologist (kidney doctor) after he received the results from the renal ultrasound and the flouroscopy that was performed an hour earlier. The diagnosis devastated me.

'Why on earth wasn't this found sooner?' I thought at the time. Like I had at the ultrasound years earlier, I wanted to deny that my child had a single kidney. I also wanted to deny the newly acquired knowledge that my guy's single kidney had some scarring and that it was connected to the bladder by an ill-positioned urinary tract that caused a backwash of bodily fluid from the bladder to the kidney (renal reflux).

But I was there for both tests and couldn't deny a problem when staff members made emergency appointments with a nephrologist and urologist. I was strong until I called my husband to tell him why I was late. Then, the tears flowed and my voiced wavered as I reported the news to my husband.

He was shocked too. Although the tests were ordered after a fairly serious urinary tract infected that resulted in a two-day hospital stay, neither of us expected the results to turn up anything serious.
Days after those enlightening tests, I remembered that long ago conversation with the sonographer who monitored the progress of my unborn son.

But which unborn son was it? Was that sonographer looking at my first son, now known to have kidney problems or my seemingly healthy second son? Deep down I knew that my young one didn't have some of the outward signs (like irregular shaped ears) like my older one did. But still I couldn't help but wondering and worrying a little.

I never confided my fears to the doctors, but when the nephrologist suggested we have our second son checked out I agreed quickly. Because my little one is neurotypical and does fairly well with tests, we were able to schedule an ultrasound appointment at our local hospital rather than with the pediatric hospital in Grand Rapids.

Our appointment was yesterday (July 28) at 3:30 p.m. The conversation with the sonographer this time couldn't have gone much better. My little five year old cooperated fully and the technician didn't ask any distressing questions as she performed the tests. Here is what she said before we left at about 3:50 p.m.

"He was the best patient of the day. Not just because of how well he behaved, but for how well his kidneys looked. He has beautiful kidneys," the sonographer told me.

'Oh, whew," I thought. I will worry about this no longer.

Sunday, July 27, 2008

The Lorenzenmobile and Going to Summer Camp

Photo: This picture of our "Lorenzenmobile" was taken back in January not long after I wrote my first post about our van (check out the link to read a cute story).

Note: I've divided my post into three parts today. There is the so-so news, followed by the good news, and then there is the interesting news. Please read on...

The So-S0 News

I returned home safely at about 5:30 p.m. this evening after spending an exhausting four hours driving during the hottest hours of the day in the vehicle my son calls "The Lorenzenmobile." Driving is one of my least favorite activities, but I'll drive longer distances when absolutely necessary. It was necessary today because my husband had to be somewhere for a work-related responsibility at 5:30 p.m.
Unfortunately the Lorenzenmobile is slightly older than my nine-year-old boy. The breaks, despite being recently "repaired," squeak horribly. Worst of all, the air conditioning gave out last year. We tried a very expensive fix, but to no avail. So, I sweltered a bit in the 84 degree plus heat. My son seemed to fair a little better, but maybe it was because he was excited about our destination--Summer Camp!. Fortunately, unlike when that photo was taken, the roads were really clear. Well that is except for the road construction that sent me on a brief detour on my way home.

The Good News

Today I dropped my son off at what he had been calling "boarding school camp." He started getting excited last night and was really happy this morning. Unlike Max's Place (see my last post), this camp is designed for outdoor learning. A special education teacher with cerebral palsey started this camp 50 years ago. The camp and (to my knowledge) the founder is still going strong.

This week my guy will be swimming in the lake, going up to the handicapped-accessible tree house, riding horses, and feeding animals along with a lot of other camp-like activities. On Sunday night (probably a couple of hours before the writing of the post took place), campers probably made s'mores. In my son's eyes, one hasn't gone camping until the s'mores (some chocolate and a roasted marshmallow sandwiched between two graham crackers) have been made. Lucky for him, it's a first-night tradition at The Fowler Center, where my guy has been going since the age of six. This is his fourth time going to summer camp, which makes him one of the youngest "regulars" amongst the ages 6 to 20 crowd that is at camp this week. Most of the staff know him pretty well and it was pretty nice to hear many of them call out to him by name.

The Interesting News

My husband and I committed to trading in our old Lorenzenmobile for a new minivan last Friday. We hope to pick it up sometime this week. If all goes as planned it will be a dark shade of blue (and yes, it should have working air conditioning.)

Anyway, in the commotion of getting his things packed and driving him there, I forgot to mention the very possible vehicle trade in to my guy who is on the spectrum. He has only just begun to react better to unexpected change. How will he react if I pick him up in a blue minivan instead of a cranberry-colored one? Will he be excited about that as he was to go to camp today? Or will my worn out camper have a meltdown because I didn't come to pick him up in the Lorenzenmobile he was expecting. We will find out on Friday. I'll provide an update soon afterward. In the meantime I'll have to figure out what to blog about next...
P.S. My five-year-old son stayed at a trusted babysitter's home and was able to go paddle boating and play with toys that were new to him!

Wednesday, July 23, 2008

Photo Essay: Music, Art and More at Max's Place

Photos by Jeannette Schmeiser; Essay by Julie Lorenzen.

Max's Place is a camp designed to encourage social and emotional growth for children on the spectrum ages 7-17. In 2007, Music and Art were the predominant programs.

They still are, but science is a also small part of the two-week day camp. (Not pictured is the creative movement programming aspect also added in 2008.) Campers had some exposure to science during a nature walk at Deerfield Nature Park. Here is my guy with an artesian well. Campers were told the water was safe to drink, so many, like my son did.

Also new this year were the guitars. I'm not sure that my guy, age 9, was introduced this instrument at camp, but young teens like my son's friend were. P.L., 13, seemed to be getting the hang of it, as you can see.

Self portraits using mirrors were made by campers, but here my son is reverting to his old sign making ways. He did make a portrait, but he also had some time and space to make plenty of signs and of course, tons of pictures of froggys. Evidence of green paint is in the backgound!

Speaking of froggys, one day my son's counselor sent home a note. According to that little missive, my son had taught the younger group of campers in his section The Froggy Song. He also led group as everyone sang the song!

Various sculptures were made during daily art sessions. Here my son's best friend holds an airplane he made. When camp ended, my guy brought home a stepping stone, a froggy sculpture made out of painted, crumpled newspaper, and a clay sculpture of the library where my husband works.

I think all the adults working at the camp would agree with me, though, that the best part of the camp was all the smiles. I wasn't there, but I saw many smiling happy faces in the photo disc that my guy brought home. This one is a favorite of mine.

Monday, July 21, 2008

Article About Adults and Asperger's Syndrome

Today I'm going for a personal record for my fastest post ever! Here is a link to an article about adults and Asperger's syndrome that I thought was informative. The most enlightening bits are in the following paragraphs:

"Even Asperger's is listed under the category "usually first diagnosed in infancy, childhood or adolescence" in psychiatry's official guidebook, the Diagnostic and Statistical Manual of Mental Disorders, and it was only in 1994 that the syndrome was added.

Adults with Asperger's have normal or above normal intelligence, but their social skills are disastrous. They avoid eye contact, have difficulty forming relationships and can't pick up on normal social cues.

Some are diagnosed with social anxiety disorder or depression. "You treat the depression but then you're left with somebody who still is a bit odd and eccentric," Elliott says. "That may be the first time they actually come to somebody's attention. ... the reason he's depressed is because he can't develop relationships. Even though we've treated his depression, he's still stuck with disability."

Note: I'm off for a short blogging break. I'll be back Wednesday or Thursday.

July 22 update: I usually add a my thoughts section which explains my position as well as why I have chosen an article. I didn't really have time to do so when I first posted, so I will add that section now.

My thoughts: Mostly I feel this article may be helpful to adults who have struggled all their lives socially, but have never heard of Asperger's Syndrome (AS) before. For some (but not all) people, knowledge of AS can be helpful towards explaining why one has had one uncomfortable social interaction after another. What is disastrous is being constantly rejected socially and not having a clue as to why or what to do about it.

In contrast, children with AS who are currently raised by knowing parents may have the benefits of successful interventions and may in some cases develop a stronger self identity and better self esteem as a result of knowing about having this condition. This is my hope for my son. Currently, my son has some difficulty in social situations, but not all interactions are disastrous. He has some great social skills such as smiling when appropriate and being appreciative.

That said, there is a certain person I'm thinking of who could have benefited from knowing about AS a long, long time ago. The person I'm referring to is a parent who had a couple of episodes of deep depression as a result of a couple of impossibly difficult social situations. This same person struggled with low self esteem for years and years before realizing that a diagnosis of Asperger's Syndrome could go a long way in explaining some social difficulty when in most situations outside of family life. This knowledge was a relief more than anything else. It helped alleviate some of the pain of this particular person's internal struggle.

For more of my insights and the insight of another blogger please see the first two comments below. Thank you.

Saturday, July 19, 2008

Article on Arts and Music Camp for Children on Spectrum

Photo: Here is the Finch Field House (built in 1951) where campers from Max's Place took on a rock climbing wall.

Today there was a beautiful front page article about my son's art and music camp, Max's Place, in my local newspaper, The Morning Sun. My guy and I were quoted extensively in the article, so you may want to take a look at the link here. My son's counselor (actually a paid employee) and another fellow camper, my son's friend, at the camp were also quoted. A nice surprise was that my blog was mentioned, complete with the url! That said, I thank the Sun reporter for the inclusion and welcome all new visitors from Isabella and Gratiot counties here in Central Michigan.

Here are my notes from behind the scenes: The photographer and reporter visited yesterday during our field trip to a rock climbing wall at Finch Field House on the campus of Central Michigan University. That field trip, held from noon to two p.m., was held the day after the last actual day of camp.

The grant-funded Max's Place was held on Mondays to Thursdays from 9-3 p.m. with Fridays reserved for trips. The best part was that the eight days were free to campers, albeit a $50-$75 fee for camp t-shirts and supplies. Campers were divided by age and participated in a daily art and music session. Creative Movement and Athletic Skill Development were also part of the programming. CMU football players dressed in their team jerseys dropped by at some point during the camp to toss a few balls around with the campers, all of which happened to be boys this year. (We had one girl attend camp in 2007.)

As for last week's field trip, Max's Place families met at 9 a.m. to go on a hike guided by a nature expert at Deerfield Nature Park, which is a few miles west of Mt. Pleasant in the country. Highlights of that trip was an Artesian Well, a covered bridge, an abandoned turtle's nest, and a swinging bridge. We also had a lunch with hot dogs, salads and desserts donated by Walmart whose employees cooked the hot dogs and set up the food.

Please note that while I'm the volunteer field trip coordinator known officially as a "community integration specialist", I cannot take credit for these last two wonderful field trips. They were organized by a paid staff member who did a terrific job. My fun job coordinating the trips will begin in August. I have plenty of ideas and will probably write about each trip after they occur. We try to schedule one per month although last year we missed meeting on three months due to inclement weather or busy schedules.

I am hoping to put up a few pictures taken during camp soon, but I need to get permission first. My son brought home a ton of art projects from his camp, but the best thing he brought home was a picture CD that was full of great pictures taken at camp. Because my son only told me about bits and pieces of his days at camp, the CD gave me the opportunity to learn more about how he spent those eight days.

Wednesday, July 16, 2008

Reading with "The Puppy Dogs"

In a "I wish I had a camera moment," my older son sat on a blanket with his little brother and read two books aloud to him, a dog named Breeze and the lady who brought the Golden Retriever. The setting was our local public library. The program was called Tale-Waggers and was sponsored by the Mt. Pleasant Kennel club. The idea behind the program is that children are more comfortable reading to dogs than human beings. They may be on to something there...

We might not have gone tonight (in a rain storm nonetheless) if we hadn't had great success the week before. I was needlessly nervous that first night, but the brothers made a good team and did absolutely fine. Both were well behaved little gentleman and both seemed to enjoy the activity.

The little brother picked both dogs. The big brother chose to have the same dog as his brother--probably because making choices is hard sometimes for people who have Autism Spectrum Disorder like my son. It worked out well because my little one does not read yet. He'll go to kindergarten in the fall.

As for me I was surprised on two counts. I figured both boys would choose a smaller dog. Imagine my shock when my little "foo foo" boy passed up two cute little poodles to read to Barren, a big German Shepherd and Breeze, (the previously mentioned) Golden Retriever respectively.

The second surprise was that my one with ASD actually looked forward all evening to the 6:30 p.m. event (I told him about it at 3:30 p.m.). My guy who has been anxious about dogs (especially big ones) for most of his life kept asking when it would be time to "read to the puppy dogs." Mom stands corrected on both accounts.

Monday, July 14, 2008

Photo: A Lazy Summer Day?

No, my son is imitating the behavior of two young adults that he saw a few minutes before stretching his towel and then body out on the sand! This happened in late June of 2007 after attending the first arts and music camp for social and emotional growth. Coincidence? Maybe, but then again maybe not. As for the behavior shown, it only lasted about a minute which is good considering that his mom knows all about sun and skin damage!!
The second annual art and music day camp for children on the spectrum started at Central Michigan University a week ago today on July seventh. Camp will officially end on Thursday, but there will be an optional field trip at a rock climbing wall on Friday. My guy is much more receptive and happy at the camp this year. He loved the music portion the first summer, but said the art session was too long. This year he likes both sessions. As for social growth, I started noticing significant progress a few weeks after the camp last year. I hope I'll see some more in the future.

Friday, July 11, 2008

Review: So Odd a Mixture

Theme of the week: Book reviews. Today's featured review is on the "scholarly book" I promised on Monday.

So Odd a Mixture

It is a truth universally acknowledged, that a person immersed in the world of autism, must see a little autism in everyone. The tendency to "diagnose" someone seems to be so well fixed in the minds of everyone who has a little knowledge or more of autism.

"Austen. Autism. Austen. Autism. What can [those two] words possibly have in common?" (15)

The previous sentences are the first to appear in Phyliss Ferguson Bottomer's introduction of her book So Odd a Mixture. Some of us amongst those who must see a "little autism in everyone" are parents. Bottomer, however, is a speech therapist who has worked with individuals on the spectrum. After reading her book, this reviewer has no doubt that Bottomer is one who must see autism. She sees it in an over abundance of characters in Jane Austen's best known work, Pride and Prejudice (P&P).

"Must" is the key word because if she analyzed the only character in P&P that is obviously on the spectrum (Mr. Collins, who is the first character in the book to be diagnosed) than she would only have ten pages of character analysis. Add these pages to the forty or so pages that make up the introduction, the reference and index pages, and the four extra chapters she includes, then Bottomer would have authored a very short book indeed.

While this reviewer feels that Ms. Bottomer has stretched a bit in "diagnosing" in seven of the eight characters included in her analysis, she does feel that the name of the book (So Odd a Mixture) is quite clever. It should come as no surprise that Austen herself inspired the title of this little scholarly book which is six and two hundred pages long. In P&P, Austen described Mr. Bennet, the heroine's father, as "so odd a mixture of quick parts, sarcastic humor, reserve, and caprice, that the experience of three and twenty years had been insufficient to make his wife understand his character" (3).

As can be inferred by the title and the above paragraph, the author has diagnosed Mr. Bennet with Asperger's Syndrome. Unfortunately, Bottomer used the quick and humorous wit of Mr. Bennet in part to prove that he has Asperger's Syndrome (AS), a mild form of autism.

It is when Bottomer analyzes Mr. Bennets witicisms that this reviewer believes that Bottomer is stretching the most. It's not that a person with AS does not have a quick wit, but rather the fact that this writer believes that the intent the authoress's gift of wit to Mr. Bennett was to add humor to the novel and to link him with Elizabeth, the beloved heroine who was granted a similar sense of sharpness and humor. That said, one can argue that Austen did not provide Mr. Bennett an abundance of wit in order for scholars to prove that he has a disorder.

Bottomer has also diagnosed Mr. Collins, Lydia Bennett, Mary Bennett, Catherine de Bourgh and her daughter Anne, and the one and only Mr. Darcy, the hero! If one wonders what the value of diagnosing so many characters are, it can be said that making such assertions can spark a great deal of debate amongst Austen and autism scholars. I think this reviewer could go into endless debate about Mr. Darcy alone.

Other chapters included in So Odd a Mixture are titled "Autism Spectrum Disorders for Janeites", "Pride and Prejudice for Autism specialists", "Happily Ever After? (this one analyzes the happiness of all the couples in novel) and "How did Jane know [about autism]?" Of these chapters, Bottomer does a pretty good job with her explanations and analyses in all but one. In the chapter "Pride and Prejudice for Autism specialists", Bottomer inexplicably leaves out a brief plot summary. Such an inclusion would have added a little depth to the chapter, not to mention two or five pages to the book.

As for the other chapters, one chapter is dedicated to each of the characters Bottomer diagnoses. One complaint is that Bottomer goes into all the "whys" in terms of a character having AS, but if she went into any of the "why nots," then they were easily missed. And though she supplies many, many "whys," Bottomer avoids going into why Kitty may or may not be on the spectrum too. After all, Kitty and Lydia seem to act identically (putting the Wickham incident aside) with Kitty only improving in behavior when separated from Lydia.

In conclusion, this reviewer would say that despite the weaknesses of the book, it could potentially serve as a great resource for college students writing papers on P&P or AS. There is also plenty of fodder for scholars and thinkers who wish to read a quirky, scholarly book about a P&P or about fictional characters with AS. Outside of scholars, other readers may find Bottomer's book to be too odd of a mixture.

Thursday, July 10, 2008

Review: With the Light:Raising an Autistic Child

Theme of the week: Book reviews. This review generally covers the first two "episodes" in the Manga series by Keiko Tobe.

Review: With the Light: Raising an Autistic Child (Episodes I and II)

I used to tease my seventeen-year-old niece about reading books backwards. Instead of flipping the pages of her books from right to left, she flips them from left to right. Like one would do with ordinary books, she starts reading at the top of the book but reads from right to left instead of left to right. You see, my niece who is of the first generation to love the Pokemon phenomenon now has moved on to Japanese-style Manga books.

The reason she handles her books "backwards" is because her books are originally written in Japanese and then translated to English. It's easier to set the Manga up backwards than to translate the book into a traditional format.

I am less likely to tease my niece now because I have gone and done it too. I found the title of the Manga With the Light: Raising an Autistic Child by Keiko Tobe too difficult to resist. I read a review and was impressed that there was a decent fictional book about an autistic person that was written by someone who does not have a relative with autism. Most books on the topic are nonfiction and written by adults on the spectrum or parents of someone with autism.

That said, With the Light is actually based on a mother/son pair whom she met at a school event. All the children there were asked what they wanted to be when they grew up. Most could answer the question, but one little boy could not. He had autism. His mother intervened and replied that he wanted to be "a happy working adult."

The mother so impressed Tobe by her response that the Manga author was inspired to create With the Light. Two translated editions have been released and a third is due out in a few months. The author has vowed to keep putting out new editions until her character becomes a happy working adult.

That means there will be no surprises as to how the story will end. Fortunately, the story of Hikaru and his family is compelling enough to inspire a readers to become a fan of the series. Sometimes the soap opera-ish style of the Manga and the mini story lines with the larger story are over a bit over the top. However, I believe the author has demonstrated that she has a good understanding of autism and the various social issues that surround the condition. (The causes are not discussed.)

Further, this is a good crossover series. Those who love Manga will have the opportunity to learn about autism and those who live and breathe autism will learn how to read Manga. It's a great book to give to teenagers who may have relatives or friends with autism. I'm hoping to lend my two books to my niece soon.

Parents who are used to doing things topsy turvy anyway shouldn't have problems reading the Manga. It's not too difficult once one gets the hang of it and there is a diagram at the beginning of the book which explains how it should be read. Surprisingly (to me) the characters of With the Light, in Manga tradition, look more Caucasian than Asian although the culture is definitely that of a Japanese society. Most of the characters have large eyes and the mother has blond hair. The reader is reminded of the Japanese setting, however, when certain aspects of life such as ceremonies, restaurants and business practices are featured.

Please note that translation issues are also the reason why some of statistics of With the Light: Raising an Autistic Child are wrong. The original copyright for this Manga was 2001, but the first two editions in English have just come out in September 2007 and March 2008 respectively. The third is due out in September 2008.

Excerpts From a Manga blog:

"I do wish the book depicted more of Hikaru’s inner life. In a few places, the story shifts to Hikaru’s point of view, and that goes a long way toward explaining how he behaves. I know that this is difficult, because autism is poorly understood, but it almost seems like Hikaru is off in the corner for most of the book. The story is really more about Sachiko learning to cope with him than Hikaru himself."
By the end of the book, which includes two essays about autistic children, I felt like I knew a lot more about autism. I also was hungry for more. With the Light manages to be informative without being preachy, and if the story isn’t always realistic, it definitely kept me reading. This book is very different from anything on the market right now, and I certainly hope it finds its audience. It deserves to."

Tuesday, July 8, 2008

A Review of My Kitty Catsberger

Photo: This is Pumba, age 13 and one of our own two "Kitty Catspergers" residing at our home. The other Kitty Catsperger is Simba, age 14, who is also a "tiger" cat. Like people with Asperger's Syndrome and people in general, our two cats have distinct personalities. Simba hides while Pumba is the social one who seems to like kids. He sleeps with my youngest son most nights.
This week's theme: Book Reviews!! Today's feature is a children's book. The next two that I'll review are for teens/adults and the last is a scholarly book more geared towards adults.

A Review: My Kitty Catsberger

Today I finally had the chance to browse through a friend's copy of My Kitty Catsberger by John Orlitz. A description of the book reveals that it is designed "to teach children (of ALL ages) how “being an Aspie” is, indeed, a “cool-as-cats” opportunity [...].

That description seems to reveal to me (as a reviewer) that this book is more for neurotypical children and their parents. I found the rhymes and pictures to be very cute and also sensitive in regard to individuals who have Asperger's Syndrome (AS). I can see myself reading this book to my neurotypical five year old who has a brother who is on the same end of the autism spectrum as those individuals with (AS). In general I found that Orlitz explains the traits of AS well explained and also found the pictures to be colorful and playful. I believe my little guy will like this book.

My biggest criticism of My Kitty Catsberger is that Orlitz addresses the connection he is making between cats and AS indirectly. The book does not mention individuals with AS at all. It only discusses the traits of cats. I'm not sure that readers who have no previous knowledge will be able to make the connection the author is trying to make. That is why I recommend that parents or adults with knowledge of AS read and then discuss this book with children.

While this book may be great for siblings of those with AS, I'm not convinced that this book is appropriate for all children who have this condition. While my younger son adores cats and kittens, my child on the spectrum is in denial about being on the spectrum and only has a passing interest in animals (he might pet one for a second if the animal is in front of him).

Although I have not read it yet, I think my child with ASD will probably benefit more from Orlitz's other book, The Gifts of Asperger, which is described as being filled with "positive and affirming" inspirational stories about children, teens and adults with AS. A lot of children on the spectrum seem to appreciate nonfiction books more than fictional books. Perhaps one reason is that nonfiction books contain concrete concepts rather than abstract ones like the connection between cats and individuals with AS that Orlitz's book contains.

To be direct I think that the abstract concept I just mentioned may make My Kitty Catsberger unsuitable for some children on the spectrum. The book is cute and has fun rhymes, but will the child grasp the idea that the author is trying to convey? I'm not so sure...

That said, some children with AS may love this book, especially if they have a specialized interest in cats or animals in general. Acceptance and knowledge of their condition might also indicate that a child may take an interest in My Kitty Catsberger.

Anyway, here is a more detailed description from the author's website (which also contains some potentially interesting information about pyschomusicology):
"Ever wonder which pets are the Aspies of the animal kingdom? Why, the cool ones of course! My Kitty Catsberger is a colorful, rhyming, illustrated story that depicts how cats, much like Aspies, are cool, sensory enhanced, ultra-focused, sharp as tacks, highly specialized, self-motivated, and creatively playful beings who march to the tune of “I’ll Do it My Way!”

Friday, July 4, 2008

My Young American Patriot

There's my guy, age 9, with his hand over his heart while Taps was playing in the center of downtown Mt. Pleasant on Memorial Day.
My guy on the spectrum (far right) looks forward to the Memorial Day Parade every year despite the fact that not much candy is handed out (much to the chagrin to my little guy on the left.) Flags, however, are given out and he loves that. For you see, my young American Patriot loves everything red, white and blue.
He could recite the Pledge of Allegiance at age four when the word "flag" was one of his favorite words. He now knows most of the the words to our National Anthem, The Star Spangled Banner, and also can sing You're A Grand Old Flag with relish. Someday we'll show him the online archives for the United States where he can learn all about the Declaration of Independence, The U.S. Constitution and The Bill of Rights. I'm glad my guy is interested in our country--where freedom (well a certain amount anyway) is guaranteed to all citizens regardless of ability.
Have a Safe and Happy Fourth of July!!

Wednesday, July 2, 2008

Last State Insitution in Michigan: The Mt. Pleasant Center

For many who care for or work with people with special needs, "institution" is a dirty word. There are many negative connotations associated with that word. Those negative connotations include isolation, rejection, abuse, straight jackets, and sedation.

Fortunately, in the seventies, around the time that this mom of a special needs son was born, institutions became less of the norm in regards to managing the cases of those who were physically and neurologically different. Before the seventies, there seemed to be two choices: send the child away to an institution or keep the child at home like my aunt did (the best choice for her gentle son with cerebral palsy.)

Currently the emphasis is on placing the individual with special needs in the community. Various types of therapy that evolved in the late twentieth century have helped to make this possible. Speech, occupational and even physical therapy help to make individuals with special needs more independent.

Further, most of these individuals with special needs have social workers that help to insure that their needs are being met. Some people live in group homes and some live in their own apartments. Some are still kept at home.

The option of institutionalizing an individual is quickly fading away. Since the 1970s, twelve state institutions in Michigan have been shut down. Only one remains left open in my state. It happens to exist in Mt. Pleasant, the city where I live.

In the past week two articles (Part I and Part II) have appeared on the front page of Mt. Pleasant's newspaper, The Morning Sun. The articles are about the efforts by various advocacy groups to shut down the center. These advocacy groups include the Michigan Disability rights coalition, United Cerebral Palsy and Michigan Protection and Advocacy Service, and the ARC of Michigan.

According to the article, the efforts to place residents in the community have resulted in the number of residents at the center being far past its peak. Less than a hundred and fifty individuals with special needs reside at the Mt. Pleasant Center. The occupants newest to the center are thirty-nine individuals who have been deemed "criminally insane" by the courts.

Not everyone wants the center to be shut down. The families of some of the individuals residing at the center are concerned what would happen to their family member if the center was to close. Most of these are moms who say that their adult son or daughter does not deal with change. Most say they cannot keep their offspring at home because of challenging behaviors and that there is no other appropriate place to send their challenged loved one.

I, too, recognize that not all individuals with special needs can live independently or even in small group homes. There are some who need constant care in a facility designed to handle severe challenging behaviors. Ideally, this facility would be a place where these individuals are seen as human beings who deserve the best possible care.

On the other hand, advocacy groups have a reason to be concerned about the way the center operates. In 2006, an article appeared in the center about a man with autism in his thirties who died of internal injuries. He was found submerged in a bath tub. It looked like an innocent drowning, but an autopsy report said otherwise. As I have not seen any follow-up stories to this case, I believe the homicide investigation remains open.

I've never been to the Mt. Pleasant Center, which is located on a campus with fifteen buildings. Some say it is run down, but others say it is a nice place to be and that the staff at the center are "wonderful, caring individuals."

If I had to guess, I would say that the center will remain open for years. The name, however, may change. So will the general status of the occupants. Individuals identified as "criminally insane" are mandated to be placed somewhere. Unfortunately, there is no clear mandate on how to care for those with severe behaviors and no way to predict what will happen to these individuals and their families.

Tuesday, July 1, 2008

Michigan Booster Seat Law Update

On Monday I wrote a post about my concerns behind the new booster seat law that goes into effect today, July 1, 2008. I was wondering if my nine year old with autism had to be put back into a booster seat because he is under four feet nine inches tall. Since then I emailed the office of Bill Caul, the state representative for my district and received a reply from an assistant which included the link that spelled out the law much more clearly than the news stories I had seen. This is what the lawmakers have written:

"A child who is 4 years of age or older but less than 8 years of age and who is less than 4 feet 9 inches in height shall be properly secured in a child restraint system in accordance with the child restraint manufacturer’s and vehicle manufacturer’s instructions and the standards prescribed in 49 CFR 571.213."

Ok, that's pretty clear. Whew, we're safe! That said, we may buy a new vehicle that comes with booster seats in order to meet safety recommendations and hopefully those seats will be removable if/when necessary. I'll also try make sure I have some sort of proof in my wallet that shows that my small guy is indeed older than seven years old. I should have the photo security card (with his birth date, height and weight) that is now issued with school pictures somewhere. Here is the link where one can read the law in its entirety.