Photograph

Okay, let's do a little experiment. This picture was taken by me at a class field trip to a farm yesterday. Look closely...

Can you spot the autistic child?

If you know who I am (or who my son is) it will be easy.

So what is the point? This is a General Ed Kindergarten class (names and school withheld for privacy reasons). This is a full inclusion program, and it has been absolutley fantastic for all of us.

I still bet 4 out of 5 people guessed correctly.

Centerfold

When I tell someone I have a child with High Functioning Autism, every fifth person will say "Have you read Jenny McCarthy's book"? Or, worse yet, "Jenny McCarthy cured her kid with a Gluten free all organic diet."

I write this today because of an article someone forwarded me yesterday.

http://www.sheknows.com/entertainment/articles/960799/jenny-mccarthy-to-bare-breasts-in-playboy-for-autism

You don't need to read it. Autism Awareness "hero" Jenny McCarthy will pose nude in Playboy to benefit autism research.

Here's why we don't claim Jenny McCarthy. I am all for using celebrity to further the cause of autism awareness. I got no problem with using sexuality to gain said celebrity status. However.. having silicon implants does not make you an organic chemist. Jenny McCarthy admits herself that her son probably never had autism but rather Landau-Kleffner syndrome. In her defense, the symptoms present similarly and Autism is a spectrum disorder. There are many children with other "diseases" or "syndromes" that additionally fall under Autism Spectrum Disorder.

http://www.hollywoodlife.com/2010/02/26/jenny-mccarthy-says-her-son-evan-never-had-autism/

Celebrities often use their celebrity to further causes, expecting us to believe their cause is just and fair because they are a celebrity, damnit! I'll pick on both sides of the political spectrum... Think Alec Baldwin, Martin Sheen, Rob Reiner, Ted Nugent, Hank Williams, Jr., and Rush Limbaugh. ENTERTAINERS! Neither doctors, nor research scientists, and certainly not politicians.

I don't doubt Jenny McCarthy loves her child and wants to do everything possible for him. That's admirable. But, please stop spreading lies and misinformation in the name of awareness. Some of us actually deal with this every day and can't stand being asked if we read your book (as an aside, she actually has 5 published books on Autism).

Please continue to use your body for our cause... but hire a PR guy for your interviews.

http://www.time.com/time/health/article/0,8599,1888718,00.html

An interview with Time Magazine. Worth reading if you skipped the other links and just trusted me. By the way, Jenny, "shadow" refers to the aides that "shadow" the children in the classroom, not the children themselves. Get it? Shadow as a verb, rather than a noun? Of course you didn't... but that didn't stop you from yapping about all you've done.

This all sounds like I hate Jenny McCarthy... I honestly don't. I actually think she is a pretty funny writer (Belly Laughs is a pretty funny book). I think she is a beautiful woman. I think she cares deeply about her son.  However, Jenny McCarthy is to autism what Gloria Allred is to law. Been out of the spotlight a little too long?

Here are some equally beautiful women that use their brains to further the cause.

Please note that my wife would not let me post her picture...

Holly Robinson Peete (47) and Toni Braxton (44).
Both beautiful, talented women with a child on the spectrum.

Maybe I should relax and claim her being in Playboy is a great thing if she actually does donate the money to autism research. Nobody reads the articles anyway, right?

Both Sides Now

One of the hardest parts of raising a child with autism is accepting that you are no longer in control.

Let me back up a little... Our annual IEP (Individual Education Plan) was about a week ago. For those of you who don't know what that means, in a nutshell, it is an outline/plan/contract of all the services and goals (both educational and personal) for the inidividual with special needs in the school district.

We were very pleased with the meeting this year. Our son will remain in general ed, advance to the next level (first grade), retain speech and OT services, and his BIA (Behavior Intervention Aide) for at least next year.

We are very pleased with the result. We are very proud of the hard work Glendale Unified School district has done, they have truly been amazing. There are 6 or 7 members of his IEP team. This is incredible to us that so many people would work so many hours to help one child. I, personally, am truly humbled. But, most importantly, I am proud of my son for the work he has put in to his development. His life is not as easy as yours or mine (which we wouldn't describe as "easy", would we). We are an ABA family. We are hard on him. We have left numerous activities and locations suddenly because he made a poor choice, and we sure as hell aren't going to be those parents that make empty threats. But he is learning. He is Developing. He is improving. And he is in control.

It was very difficult (still is) to accept that there is no tomorrow when raising a child with High functioning Autism. I cannot plan a vacation, a job, an IEP, or even a dinner out without taking his actions into account. He will dictate what the rest of the family will do... always.

It is paralyzing as a man to relinquish this power. Most of us men have been raised (or learned behavior) to solve problems. I know this frustrates women everywhere in every relationship, but, sorry, it's who we are. We cannot fathom why somebody would tell us about a problem in their lives if they didn't want a solution. We bitch about how women can be so complex, while women bitch about how we can be so simple.

As a man, my son's future is something I cannot fix (alone). I need help. My wife provides most of that help, but therapists, psychologists, lawyers, teachers, doctors, school administrators, insurance adjustors, family and friends are going to tell me what I need to do. It's my job to decide what advice or path is best, and which advice and or path is complete bullshit (JENNY MCCARTHY). We are constsantly reminded as special needs parents that "We know our child best. We inherently will know what is best for our child"...

But sometimes I don't.

Sometimes, we need help. Sometimes, I need to admit and accept that there are people smarter than me. Sometimes, I need to reluctantly trust that people have my son's best interests at heart and not their own. Sometimes, I need to admit my mistakes and that I am fallible. Sometimes, I need to admit I am not in control.

Sometimes, I need to accept that I cannot fix this alone.

I think that there are few men that stick around to raise special needs children because these admissions are too hard to make.

I deeply respect and admire those that do.

Remember, Autism Sucks.

Moving Right Along

A couple of phrases or words I wish would disappear from our lexicon:

1. "Really?" - Nothing annoys me more than this phrase when it is used to portray sarcastic disbelief. It's not new. It's not clever. It doesn't make you hip.

2. "Thrown Under the Bus" - I don't know the origins of this one, but it is a failed metaphor. I'm guessing the imagery connotes a group or team of people on a bus to some destination or goal. Why would someone being thrown under said bus be used as a scapegoat? It didn't stop the bus from reaching it's destination. A better metaphor would show that someone objected to the destination and took a different mode of transport. "Upon realizing our mistake of going to the Olive Garden on a Friday without reservations, we threw Jim's ass in the cab because he was the one who wanted unlimited breadsticks"

3. "Retarded" - Haven't we passed this yet? As a verb, it means to impede or slow a direction. As an adjective it means having those qualities. As a noun, it means someone with an IQ below 70. So describing somebody's shirt as retarded says a lot more about you than the shirt. It's offensive. Knock it off.

4. "Ginormous and Coinky-Dink" - These are always said by a person as if they are adorable and cute words that I've never heard before. We have.

5. "Tiger Mom" - I don't care how empowering you think it makes you sound, you're still a bitch.

Dude Looks Like A Lady

5 reasons why I've been a housewife too long:

1. I have an opinion on who legislates from the bench more, Judge Joe Brown or Judge Mathis.

2. Before I was a housewife, I didn't even really like ice cream.

3. I've started using ABA (Behavior Therapy) techniques on the cat. "Corky, in or out. Make a choice. Okay, I'll choose for you. Out"

4. I debated between a Lunchables and Dino-bites for lunch the other day. Chose Dino-bites and thought "these would be really good in a casserole"

4-b. I use words like casserole.

5. I polish off a pint of the aforementioned ice cream while watching "The Biggest Loser"

California

Although this blog is written primarily for myself, I'm going to take a moment to get Political. I live in California. Last year, our Democratic Governor, Jerry Brown, decided that a good way to save the State money was to cut $175m from services provided to disabled children. The entire state budget for these services was about $600m (depending on who you ask), cutting close to 1/3 of the overall state funding.

This budget has been adopted for this year.

I am not a politician. I am not an accountant, nor statistician, but I am a taxpayer, and I am a parent of a child with Autism.

Let's jump ahead to this year... our regional centers (basically, the local office that deals with services for disabled children) have started to charge an annual fee to families that receive services... ANY services. The fee is $150 annually for a family income at 400% of the Federal Poverty Level, and $200 for 800% of the Federal Poverty Level. It is noteworthy that this number does not take location of residence, cost of living analysis, or even California Adjusted income into account.

Personally, I receive more than $200 worth of services through the regional center (because they send me a fancy statement of services every year... how much does that cost?), nor is $200 something that I would consider cost-prohibitive, but...

It is absolutely reprehensible to turn State Services for Disabled Children into a fee-based program. The DMV in california is a fee based program... if you don't have a car, or you don't drive, or don't use them for anything, you don't have to pay them anything. The DMV still receives general State tax funding, but utilizes its fees to operate as well.

These are my fears...
1) The DDS (Department of Developmental Services) in Sacramento will see this as a "money maker" and perpetually raise this fee or, worse yet, start charging fees on a per service basis in future years.

2) $150 or $200 would be cost-prohibitive to families. I would hate to think of a family not pursuing services for their child because they didn't want to pay the fee(s).

3) More services/responsibilities would fall upon the school districts (in California, this begins at age 3). This might ease the costs of the DDS, but would increase the costs on the school districts... guess what? BOTH ARE PUBLICLY FUNDED! It might be a different pocket, but it's the same damn pair of pants.

The letters I have written to the governor (which have been unanswered) basically go like this.

Mr. Brown, it is truly reprehensible that you would cut the budget to services for disabled children in a time that demand for said services is exploding. I understand that the State is suffering financially. I understand that cuts must be made to our budget. It is, however, cowardly, to make those cuts to those who are the least likely to be able to defend themselves. Your actions embarass me as a tax-paying Californian, Insult me as the parent of a child with autism, and betray me as a Democrat. I am asking you to, not only repeal the cuts your budget made to children's disabled services, but increase the funding.

The State Legislators are receiving their own letters.

If you live in California, especially if you do NOT have a child receiving services, I urge you to send your own letter.

Governor Jerry Brown
c/o State Capitol, Suite 1173
Sacramento, CA 95814
Phone: (916) 445-2841
Fax: (916) 558-3160

If you took the time to read this, I sincerely appreciate it.

I promise the next post will be about something funnier... like farts.

Remember... Autism Sucks

Cover Me

The irony here is that my "Autism Speaks" car magnet covers where my son decided to "practice" his writing with a rock.