A squirrelly love story about autism

by Beth Finke

Tomorrow is Valentine’s Day, and I’m sending a gift now to thank you all for reading and leaving comments on the Easter Seals and Autism blog.

It’s not chocolates, sorry. Not roses, either. Instead, it’s a story. A love story.

The story is written by Matthew Baldwin, a computer programmer from the Seattle area who does freelance writing on the side. He’s a great writer. Lots of people like him. Every month nearly 10,000 people look at his “defective yeti” blog.

Baldwin keeps the names of his wife and toddler son anonymous in the blog, referring to her as “Queen” and to him as “Squirrelly.” Until the little boy turned three, that is. Now he’s called “Squiggle.” She, of course, remains Queen.

Baldwin has kept this personal blog for years, covering politics and music and movies and most of all, things he just finds odd or humorous.

And then, Squiggle the Squirrelly was diagnosed with Autism Spectrum Disorder (ASD). So now Baldwin blogs about autism, too.

Here’s one example from a recent post:

Raising an autistic child is frequently frustrating and often exhausting, but it also brings its own rewards. In many respects it is like watching a foreign movie: sometimes you feel like you don’t have enough context to understand everything that is happening, but you appreciate that you are seeing a story completely different from the conventional narrative.

Squiggle is different than typical kids, but that’s okay. If he weren’t, he wouldn’t be the son we love so much.

That gives you an idea of how this guy thinks. And writes. The love story I’m sending you takes place the day Squiggle was diagnosed. We all know that day can be a dark one for parents, so you’re going to have to trust me on this one — the story of Squiggle’s diagnosis is sweet, lovely, and… well… a perfect Valentine’s Day gift. Enjoy.

J-Mac makes points for autism

by Beth Finke

Just found out that the theme for the Valentine’s Day Larry King Live TV show this Thursday is The heartbreak… and hope of autism. Guests slated for the show that night include Holly Robinson Peete, Doug Flutie, Toni Braxton and Jason “J-Mac” McElwain.

If you ask me, McElwain is sure to be the biggest star of the show. J-Mac has autism, and he received national attention after scoring 20 points in the last four minutes of his first-ever appearance in a high school basketball game. Six of his baskets were three-point shots.

If you look at the video of his performance you’ll see the crowd go wild just to see J-Mac enter the game. And then when he starts scoring — wowee! After the game, the crowd rushes down to carry J-Mac on their shoulders in triumph. It’s a triumph for the team, and a triumph for inclusion.

An ESPN story describes J-Mac’s achievement like this:

“There are thousands of families across the country, getting a diagnosis of autism for their 3-year-old; they look at Jason and have tears in their eyes,” said Dr. Susan Hyman, an associate professor for pediatrics at the University of Rochester’s Strong Center for Developmental Disabilities. “Because the image they have in their minds isn’t of some strapping young teenager making baskets from half court.”

“The hope and the promise this provides — it’s priceless.”

Larry King Live airs nightly on CNN at 9 p.m. ET. The CNN Web site encourages viewers to email them with questions about autism before the show.

Bright future ahead for autism therapeutic school

by Maurice Snell

I hope everyone is enjoying the new year so far. 2008 is a year with many major events imminent at Easter Seals Metropolitan Chicago. That’s where I work.

One major event that is scheduled to happen this year is the opening of the Easter Seals Metropolitan Chicago’s New Therapeutic School and Center for Autism Research. Phase I of the project is expected to be completed this fall, and the construction gets better and better each day.

An artist’s rendition of completed Easter Seals Metropolitan Chicago’s New Therapeutic School and Center for Autism Research.

When I drive by the campus of the new building on my way to work every morning, I don’t just see one ordinary building in one location. I see the entire future of the completed work ahead of me. This campus will have it all: state-of-the-art sensory rooms, therapy rooms, classrooms of larger size, and extensive research by the professionals from the University of Illinois at Chicago.

The new school will be a haven for many underprivileged children and families. Easter Seals is ready for a positive change for those with autism. With that being said, I believe Easter Seals will be great in 2008!

Book review: Jenny McCarthy’s “Louder Than Words”

by Beth Finke

Jenny McCarthy’s book Louder Than Words: A Mother’s Journey in Healing Autism is about her son Evan, who was diagnosed with Autism Spectrum Disorder (ASD) in 2005. When the book came out last year, McCarthy promoted it on Oprah. And on ABC’s 20/20. And on Good Morning America. And on The View. And on Larry King Live.

There are plenty of good books about autism out there. This is not one of them.

The best thing I can say about McCarthy’s book is this: it sure brought a lot of attention to autism. This past Super Bowl weekend, in fact, the HollyRod Foundation awarded McCarthy the 2008 Trailblazer Award. The HollyRod Foundation was founded in 1997 by NFL quarterback Rodney Peete and actress Holly Robinson Peete. Their Trailblazer Award honors the achievements of individuals for their efforts to raise autism awareness.

It comes as no surprise that Jenny McCarthy won that award. I hope she isn’t holding her breath for any prizes in literature, though.

Autism and the economic divide

by Erin Rogers

A Newsday article looks at why affluent school districts “classify more than five times as many of their students with autism as districts at the opposite end of the economic spectrum.”

The Newsday survey drew on state data from school districts whose enrollments were more than 500.

Advocates who have compiled similar data voice concern that many poor, minority youngsters might not be getting the same extensive, state-mandated services available to those identified as autistic…

Medical experts blame the problem not so much on schools as on a lack of quality health care in low-income neighborhoods. Research shows toddlers in poor families who aren’t taken on regular visits to pediatricians are less likely to have their autism diagnosed when it first appears — usually, before age 3.

This news is disturbing. Early treatment is vital for children with autism, and it pains me to hear of children falling through the cracks.

At Easter Seals Peoria-Bloomington, we screen all children regardless of income. We team with daycare centers, health departments, school districts, and social service agencies in our area to get the word out.

April Leopold, the supervisor of screening here at Easter Seals Peoria-Bloomington, describes it this way:

“We go out into the community where kids are. We then make referrals and linkages for families to the state’s Early Intervention Programs, local school district programs, community programs and services.

We found that we have to go where the children are in order to catch them.”

A basic rule for treating autism is the earlier the intervention, the better. I’m pleased we screen children here no matter what their income level — I just wish this was happening more often in other parts of the country.

Preschool children with autism need early intervention programs like ours to help them learn skills they’ll need to be successful in school. And in life.

Read Erin Roger’s biography.

Maurice and autism: big winners in Vegas

by Maurice Snell

Last week, I traveled with my father and my colleague Patricia Wright to the Red Rock Hotel in Las Vegas. We were there to take part in a press conference about the new Autism Services Program at Easter Seals Southern Nevada.

The new program will feature services such as early intervention and therapeutic programs and will benefit many families. This press conference was headed by Brian Patchett, CEO of Easter Seals Southern Nevada. The key speakers included Deborah Meinberg, Director of Easter Seals Southern Nevada; Gina Baxter, the mother of a child diagnosed with autism; Dr. Patricia Wright, National Director of Autism Services for Easter Seals; and myself.

But that’s not all. Steven Jackson, a running back for the St. Louis Rams, is from Las Vegas and he spoke, too. The Easter Seals Southern Nevada Web site describes Jackson like this:

Steven Jackson is a familiar name at Easter Seals Southern Nevada. Last year, he hosted a spectacular fashion show, golf tournament, and children’s football clinic to benefit Easter Seals Southern Nevada.

The stories told by those speakers in Las Vegas inspired hope for a brighter future for those living with autism. I believe things will be great in 2008!

Super Tuesday, autism, and secret ballots

by Beth Finke

Tomorrow’s Super Tuesday! If you live in one of the states holding a primary, you might want to take a last-minute look at what the candidates have to say about autism before you duck into the voting booth.

In November, Katy Beh Neas blogged about autism being an issue in the presidential campaign and provides links to the candidates and their autism platforms. 

The 2008 Presidential Election Action Center has some helpful information, too. Created by the American Association of People with Disabilities (AAPD), the site features each candidate’s record on autism and other disabilities during this election cycle.

A personal note: I lost the right to vote privately and anonymously in 1985. That’s the year I lost my sight.

After that, I needed my husband to squeeze into a voting booth with my Seeing Eye dog and me to read the candidates aloud. I’d tell Mike who I wanted, he’d help me punch the right candidate, and everyone in the place knew who I was voting for.

Not anymore!

Thanks to the hard work of disability advocates like the AAPD and Easter Seals, polling places are now required to provide voting machines with speech. Tomorrow, Hanni (my Seeing Eye dog) will lead me to our polling place; I’ll put on headphones, listen to the choices, and punch a button on the keyboard — all by myself.

Wondering who I’ll vote for? Ha! Don’t even bother asking. I’m not telling. I don’t have to anymore!

Lose the training wheels — bike therapy

by Beth Finke

In my other life, I’m a writing teacher. I teach a weekly memoir-writing class for senior citizens in Chicago, and I give seminars on writing at libraries and conferences.

After a writing seminar at the Oak Park Public Library last week, a teenager came up to chat.

“I have a poem published on the internet,” she said.

I was impressed, but I was busy signing books. I didn’t have time to ask what the poem was about. “Send me the link,” I told her.

She did.

Her poem is published on a Web site called Lose the Training Wheels.

It turns out the teenager is an identical twin. She and her sister were born prematurely, though, and the teen writer participated in a bike therapy program at Easter Seals DuPage.

Lose the Training Wheels describes the poem — and the Easter Seals DuPage program — like this:

The author is Jessica, who at age 11, attended an adapted bike camp sponsored by Easter Seals DuPage in 2003, (a suburb west of Chicago).

When a child is able to master riding a bicycle — and without those dreaded training wheels — the benefits become instantly evident. The child smiles, and the child desires to get onto the bike to ride around. Self-esteem experiences perhaps an exhilarating lifetime high. Humiliation is vanquished.

Here’s Jessica’s poem. I think it’s great:

Learning to Ride — A Poem About Bike Riding
By Jessica

Unconquerable, undefeated, and proud
The wheels turning,
People whizzing past my face,
I wanted to learn
I wanted to ride
But I just couldn’t

My pink bike with “balance wheels”
People laughing,
As I felt hurt down deep within

I tried and tried but fell
It was frustrating
But I got back up again and tried again and again

Finally, the pink bike — the “balance wheels” gone forever
I felt like a mighty king at the top of a mountain,
Who was now unconquerable, undefeated, and proud.

I’d be proud, too. Ride on, Jessica!

Help us reach 200 people on Facebook by tomorrow!

by Beth Finke

The clock is ticking …

We’re trying to get at least 200 people to join our “Shine a light on autism” Cause on Facebook and make a $10 donation before 2:00 p.m. Central time tomorrow, January 30th.

Do you have a Facebook account? If not, sign up! If so, join Easter Seals “Shine a light on autism” Facebook Cause.

This is a rare opportunity … the Case Foundation has paired up with Facebook for the Causes Giving Challenge. They’re giving away $1,000 a day to the Cause with the largest number of unique donors per day, and $50,000 to the cause with the most donors overall!

We’re going for the daily $1,000 grant and we’ve designated January 30th as Easter Seals’ Facebook day of giving to support families living with autism. We want everyone to know that autism is treatable, and there is help and hope available — today.

Please join the Cause, make a donation and spread the word!

Thanks for doing all you can to help.

Book review: Jack Gantos’ “Joey Pigza” books

by Katy Beh Neas

I read two of Jack Gantos’ Joey Pigza books: Joey Pigza Swallowed the Key and What Would Joey Do? The books are written from the perspective of an elementary age boy, Joey Pigza, who has Attention Deficit/Hyperactivity Disorder (ADHD).

These books are well-written, and Joey is a frightfully likeable character. Still, these books were real downers to me. In What Would Joey Do?, Joey’s grandmother tells him she won’t die until he has a real friend. Joey doesn’t seem to be terribly upset that he doesn’t have any friends, but it’s really important to his grandmother. He ends up pretending to have a friend and his grandmother dies the next day. Through all this, Joey’s parents aren’t really much help to him.

I think the book’s message about needing friends is extremely relevant to today’s kids, but oy! Did his grandmother have to die?

In Joey Pigza Swallowed the Key, Joey doesn’t seem to be able to manage his own behavior and the school and his mom are unable to meet his needs. The book has incredibly poignant descriptions of “special education” that takes place down in the boiler room away from the rest of the kids.

I’d recommend these books for people trying to get into the head of someone with ADHD, but I’d keep them away from kids with ADHD — especially those who are having difficulty at school or with peers. Perhaps it’s just my perspective as a parent of a daughter (who doesn’t have disabilities) who is having a difficult time with her peers. These books portray a brave boy with no real supports and none on the horizon.

We should hope for better for any child.