Archive for February, 2009

Our story…coming soon to a tv or computer near you

February 21, 2009

Ok, so it might not be as big a deal to some as the next blockbuster set to hit movie theatres, but coming in April will be a little mini ‘documentary’ I’ve been working on about our family and our journey with autism.

I think I’ve mentioned a little about this in the past, but here’s a quick refresher. I work at a cable tv station and report on all the goings-on in our little neck of the woods. I’ve never shied away from telling personal stories, so when we found out Jo Jo was autistic, I knew I had to share our story. At first I just wanted to do some kind of show on autism, but not necessarily our story.

This proved to challenging to find an angle to report on and finally I realized it would be more powerful for us to just tell our story. So over the last several months I’ve been conducting interviews for this project. It’s set to air in our area throughout the month of April to coincide with National Autism Awareness month. Due to the power of the internet you don’t have to live in our area to see it. I’ll be posting in on YouTube and putting it on this blog too.

I’ve interviewed my wife, our DAN doctor, staff at Josiah’s therapy center, etc. Basically it’s a look at our journey so far and some advice to other parents or people interested in learning about autism.

We’re not doing this or any of the other videos I’ve posted on here of my son to exploit him and his autism. I just know I wish I had some of these resources when we were first dealing with autism. If we can give some other families hope or just educate those who don’t understand autism, then I’ll have done my job.

It’s definitely been one of the most challenging stories I’ve ever had to do. Usually interviewing and writing come fairly easy to me. But it’s a whole different ballgame when you’re laying the past year of your life out there for people to see. I’m hopeful that when it’s all done, it will be something that can give a scared mom or dad out there a little light at the end of the tunnel.

I suppose I should wrap this up and get back to working on it! Now that I’ve said it will air in April, I’ve got to see it through! I’ll be sure to give updates here and post the final project as soon as I can.

Another new Jenny McCarthy book coming soon

February 19, 2009

mccarthy-book

So today I stumbled across information that Jenny McCarthy has another new book coming out soon. This one is called Healing and Preventing Autism: A Complete Guide”and is co-written with Dr. Jerry Kartzinel. It’s set to release on March 31st.

I can’t remember if I’ve mentioned before on this blog, but my wife & I have always felt some sort of strange kinship with Ms. McCarthy. Back when my wife was first pregnant with Jo Jo, I went to the library to get any book about pregnancy I could get my hands on. At the last second I saw a book by Jenny called “Belly Laughs” and figured it would be a good read for my wife to break up the seriousness of all the other pregnancy books I was bringing home.

My wife got a kick out of the book and ended up reading her follow-up “Baby Laughs.” We didn’t think about Jenny too much more after that until we were first dealing with autism. I think we had only had an inkling for a day or two that Josiah might be autistic when I casually mentioned our fears to a co-worker. She mentioned she had just seen Jenny McCarthy on Oprah talking about her son who has autism.  I couldn’t believe it. I figured that must be the same child she was talking about in her earlier books.

So we immediately devoured “Louder Than Words” and it was such an inspiration to us especially during those scary, initial days when we had no idea what autism would mean to our lives.

Since then Jenny’s been a constant on our journey. She was the keynote speaker at a conference we went to and we both quickly read her last book “Mother Warriors.” I would definitely recommend her books to any parent or relative of an autistic child or even someone who has no connection to autism but would like to learn more about it. She has a very readable style and just kind of tells it like it is.

So I’m looking forward to this newest book and hope it can help as many people as her previous books have.

Calling All Minnesotans

February 3, 2009

Over the last year or two there have been quite a few states across the country that have attempted to pass bills that would require all insurance companies to cover treatments for autism. Compared to many other disorders/diseases, etc., autism can be very, very expensive. If you’re lucky you might get your insurance provider to cover a few basic things, but too many people are on their own to foot the bills for expensive therapies, medications, etc.

We’re fortunate that our insurance provider covers the center where our son gets his therapies. But I know a lot of people out there aren’t so lucky. I also kind of live in fear that my insurance will get switched some day to a provider that won’t cover ABA therapy. What will I do then? Families have enough to worry about. We shouldn’t have to fear that our kids won’t get the necessary care and treatment they deserve as American citizens.

A bill has recently been introduced in the Minnesota House & Senate that would require that insurance companies provide coverage for the diagnosis of autism spectrum disorders, medication, and Applied Behavior Analysis (ABA) therapy. ABA is widely regarded as the most effective therapy we have today to give our kids a fighting chance at succeeding. 

The bills currently being passed through the Minnesota Legislature are HF 359 and SF 312. You can track their progress here. You can even sign up at that site to receive e-mail updates when things happen with those bills. The Autism Votes website can also give you updates on bills throughout the entire country pertaining to autism. 

And if you’re living in Minnesota, there’s quite a bit you can do to try to convince lawmakers to pass these bills. You can go here to send an e-mail to your local legislators. It’s fast and easy. This site provides a form letter you can e-mail and you can add your own story and comments to it to make it more personable. I’m sure these legislators get inundated with many requests about a number of issues, but it certainly can’t hurt if their inboxes are stuffed with people who demand what’s right for our precious loved ones who have autism.

There’s also a hearing on HF 359 on Wednesday, February 4 at 2:45pm in room 200 of the State Office Building in St. Paul. I likely won’t be able to attend as I will be at work, but I’m sure support will be needed.

So there’s my soapbox for the day. As the parent of an autistic child I feel so strongly about this. I know I’ve been blessed that we have been able to get our son’s therapies covered up to this point, but there are so many that need help. And I know any day we could be in a situation where we have nowhere to turn. If we invest in these kids while they’re young, they will only achieve more later in life and it will actually cost us less in the long run. Our lawmakers spend so much time debating stupid crap no one really needs like baseball stadiums and designating state butterflies. Let’s put the partisan politics aside for once and vote for our kids and our future!