Chicago Moms Blog

Taking a Stand

This week, I will be making history.  Not only will I be going to Washington D.C. for the first time ever, but I will also be marching the streets of the city and the steps of the Capitol in demonstration and protest.  We are flying out, leaving all three boys behind, and taking a stand.  My husband and I will be holding up signs with pictures of our two boys with autism, and like thousands upon thousands of others, we will be making a statement that we have had enough. 

AUTISM: The Musical on HBO. Don't miss it!

AUTISM: The Musical is a profoundly engaging documentary following families with children on the Autism spectrum as they prepare for a musical. (They are actually part of the conceptualizing and writing process). As a mother, it both breaks my heart and puffs it up to watch and learn how incredible these children and their parents are. The lens with which the movie shows you the intimate lives of several of the families allows for an honest look at what has too often been a taboo.

I am no expert, I have no psychology degree, I don't even have a school-aged child yet. (she is two) I am absolutely certain someone, somewhere else could describe it all more clinically, from a broader perspective and a deeper general knowledge of the subject matter; but this is how I saw it, this is how it made me feel...

Each of the kids have their own personal challenges, for some it is groups, or articulating original thought in verbal words. In one of the more emotional scenes for me, a young boy self-assess by saying: "Why do I go into my own world? I, I sometimes need friends, friends that can't be mean..." There is an inner conflict of rational self-awareness where he seems to question himself as an outsider and a human kindness that encourages him to be accepting. It was stunning.

What Makes A Bully?

So far, my son’s weathered taunts of “nerd,” “retard” and other names in junior high.  In chorus class, the kid who was tossing pencils at the back of his head was moved to the other side of the room. 

Nothing can stoke a parent’s passion faster than a bully.  My husband demands the kid’s name and says he’ll personally visit the kids’ parents if it doesn’t stop.  After I hose down my husband with ice water, (just kidding), I rehearse bullying scenarios with my son, providing ideas on how he can defend himself.   

My son has Asperger’s.  He’s brainy, wears glasses and resembles a young John Denver from “Oh, God!”  Except there’s no cigar-chomping George Burns who can protect him in the cafeteria. 

Ernie Els Tees up for Autism

Finally speaking out by wearing an Autism Speaks logo on his golf bag, South African PGA golfer, Ernie Els,  revealed last week at the PODS Championship in Florida that his five year old son has autism.

Like many celebrity families, the Els' dealt with their son's autism in private for several years before finally deciding to "speak out" and contact Autism Speaks to help raise money and awareness for autism. Similar to Holly Robinson Peete and her family, Ernie and his wife Leizl have found their lives "profoundly affected by autism". 

It's been a bit of a challenge...Like any family will tell you, it's not easy. And it's a change of life, a change of priorities. You've got to be ready for it. And it's happening more often. I never knew about it, never thought about it, until it's in your lap.

Reader's Dilemma

When Hart was in first grade, his school psychologist told me that he would never read for pleasure. At the time, I was quite indignant. There are picture books, easy readers, adaptations, comic books, TV tie-ins. Anyone CAN read for fun. Her pronouncement seemed like that of the Bad Fairy at Sleeping Beauty's cradle.

Now years later, her prediction seems quaintly optimistic. It appears that Hart will never learn to read at all. It certainly isn't for lack of trying. There have been efforts with well-known curricula for learning disabled kids; Wilson Reading, Explode the Code, LiPS. Tutoring, reward systems, computer games. Periodically, his team gets together to re-evaluate his program. More phonics, sight words, less phonics, high-frequency word drills, creative writing, reading for comprehension, reading for fluency, high-interest texts, pre-reading texts and on and on.

It is a mystery. Children with much greater intellectual impairment than Hart learn to read. In fact, using all the efforts and strategies that educators have used with Hart, pods of dolphins could have been taught to read by now. What is very clear is this: nothing has been written to the hard drive in Hart's brain. There is faulty wiring somewhere.

Jenny, Enough

Okay, I get it...you're son is cured. We all get it. But have you ever considered that some of our kids aren't? No matter what we do?

Have you ever considered that perhaps your son is cured because all you see are the good days, the good hours, the time not spent with the nanny?

Jenny McCarthy, I've had about enough of the actress turned autism spokesperson and the New McCarthyism . It is not just because of the vaccine issue. It is because reality for you is nothing like reality for the rest of us and I don't think you get it. I heard you on Eric and Kathy this week talk about how you personally called up the American Academy of Pediatrics President and spoke to him. I sure wish I could do that. 

To Vaccinate, or Not to Vaccinate -- Why Is This a Question?

Last week, we took Kavya to the doctor's for her four month well baby visit and next set of vaccinations. (Very nice and competent new doctor, btw -- Dr. Christina Vo of East Bay Pediatrics in Berkeley -- recommended! We need to find one we like better than our old pediatrician when we get back to Chicago, so if you have recommendations in the city, please send them along!) The poor munchkin had three shots scheduled, as well as an oral vaccine, and despite a bit of howling, handled them quite well. We had given her Tylenol beforehand, and so she didn't get a fever (like she did at her two month vaccinations, when we had forgotten the Tylenol, despite my doctor sister's recommendation). She was a little sleepy the rest of the day, but essentially fine by the next morning.

But here's the problem. I don't understand why some people are against vaccination. The supposed 'link to autism' is a myth. I realize Wikipedia is not necessarily a reliable font of all knowledge, but what they have to say on the topic agrees with all the other research I've done, and presents it in a nicely compact form. This is what they say about vaccination:

Early success and compulsion brought widespread acceptance and mass vaccination campaigns were undertaken which have greatly reduced the incidence of many diseases in many areas. The eradication of smallpox, which was last seen in a natural case in 1977, is considered the most spectacular success of vaccination. Currently some people assert that childhood vaccination causes some autoimmune disease and autism. Scientific studies have not demonstrated a link, however, the assertion found space in a United States House of Representatives report in 2003 which included the suggestion that mercury derivatives in vaccines might have been a cause of autism.[5]

Autism Coverage a Possibility

South Carolina will be one of the first states to institute state mandated autism coverage (starting June 1, 2008) thanks to a group of three moms who fought the system.

But why do insurance companies initially deny autism, sensory integration, and developmental delay coverage? Simply because it costs too much and according to them it is not repairable or curable.

Once upon a time Karianna at Silicon Valley Moms and Kari's Couch found out that insurance companies will NOT treat children with autism. However, states like South Carolina are now mandating insurance companies to do so.

With monthly treatments that can reach up to $5000 health care can become a burden and although my son does not have the autistic label...I know the health care burdens as well. Keywords such as sensory, oral motor, dyspraxia, apraxia, developmental delay send claims right back to us...Sorry, your responsibility.

What To Eat?

I just finished reading Jenny McCarthy's book, "Louder than Words".  I appreciate Jenny McCarthy's writing because it really is no-nonsense and easy to read - something I am grateful for when I spend a lot of time reading technical manuals for software.  At first I wasn't going to buy it.  There was a time early this year when the possibility that Nick was autistic surfaced.  It's still a very painful topic for me to talk about; we all like to think our children are perfect and I am no exception.

In the end, we were told that Nick's behavior regressed most likely because of the birth of our second son, Alex.  Alex was born when Nick was 14 months old and I cannot tell you how guilty I felt that I was depriving my oldest son from having his rightful amount of attention.  Luckily, Nick is not Autistic and his development, with the help of the Early Intervention folks, is back on track.  Still, the ghost of autism follows him around - or at least I still look for it especially when he does things that fall into the strange behavior category.