Autism Treatment Acceleration Act

Just a quick post to let you know that there’s an important bill that has been introduced in the US Congress. It’s called the “Autism Treatment Acceleration Act” and if passed it could greatly help the lives of those with autism and their families. There are many different facets to the bill and I won’t get into all of them here, but one in particular jumped out at me…

“…a requirement that health insurers cover the diagnosis and treatment of autism spectrum disorders, including Applied Behavior Analysis therapy, assistive communication devices and other effective treatments.”

In Minnesota a bill was just defeated that would have required all insurance carriers to cover ABA. That really stinks because there are so many families that desperately want to get their kids started with this type of therapy but can’t afford it. I’m fortunate that I have the one kind of insurance in our state that does cover it, but it’s never a guarantee that my insurance won’t change in the future and I’d be out of luck.

You can read more about the bill here. There are a couple of different websites that I’ve seen that allow you to send an e-mail to your US Rep to encourage them to support this bill. I used this one. Again, this is a national bill, not just Minnesota, so no matter what state you’re in while reading this, you can contact your US Congressman or woman. Who knows how closely our Congressmen and women pay attention to these e-mails, but it only takes a second and if they get enough maybe they’ll realize how important it is to support our precious kids with autism.

Surprised by the response

Guess it’s been quite a while since I’ve posted something new here. I always intend to start a new post, but by the time I have time to do it, I’m usually taking sleep over writing a blog entry.

My last posts had to do with the documentary I produced about our family called “Surprised by Autism.” The response to this show has really been overwhelming. It was always my intent with this show to reach out to those who want to know more about autism and to give those dealing with it some hope.

I’ve received numerous phone calls and e-mails from people who have been inspired by this show. It definitely makes you realize how many people are impacted by autism in their lives. The show has been airing for almost 2 months on the channel I work for and it’s also been picked up by access stations across the country from California to New York. Even though a lot of the resources I mention in “Surprised” are Minnesota-based, the information really does apply to anyone dealing with autism anywhere.

Besides other cable tv stations, I’ve also been trying my hardest to get the program into libraries. I know we’re always checking our local libraries to see if there’s anything new on autism, so I would imagine there will be some interest in people who also scour their libraries for autism information. So far libraries mainly in the Midwest are picking it up.

I don’t want to toot my own horn, but I think the cool thing about “Surprised by Autism” is that I don’t profit off it monetarily one cent. There are some other great autism videos out there, but I don’t know of too many that you can watch in their entirety for free online. Plus, the other tv stations, libraries, and autism groups that I’ve given copies to haven’t been charged anything. I understand why other people have to charge for their autism videos as they were likely produced by large production houses that need to recoup their investment. But most families dealing with autism are already strapped financially with therapies, diets, etc., so the last thing they can afford is to spend over $20 on a dvd.

I also think “Surprised” is unique in that I don’t pretend to have all the answers. We haven’t ‘recovered’ our child yet and I don’t act like everything we say should be taken as gospel. But I just hope to drive the point home that there is hope out there and maybe someone will watch this and learn about a therapy or diet that they weren’t aware of.

My wife & I have launched a special “Surprised by Autism” website where you can watch the video for free, find out more about us, leave comments for us, etc. If you know of a place that should have a copy (a library, an autism group, etc.) just let me know!

Hopefully I’ll get back to blogging about something other than “Surprised” pretty soon. I think this project has just been my focus for so long that I’ve kind of put other things on the back burner.

Surprised by Autism

Well, it’s finally here! After a lot of hard work, I’m proud to present ‘Surprised by Autism’ which chronicles the journey our family has been on with Josiah. I’ve uploaded it to YouTube and you can watch it in 3 easy installments. The total running time is about 25 minutes. I really have high hopes for this video. I hope it can help families who are dealing with autism and also those who just want to learn more about it. Feel free to forward it along to anyone you think might enjoy watching it.

So without further adieu, here’s ‘Surprised by Autism.’

Part One

Part Two

Part Three

“Surprised by Autism” will be posted any day now

So I haven’t posted in a while, but that’s because I’ve been hard at work on the documentary that I’ve mentioned in the last couple of posts. I’m glad to report that “Surprised by Autism” is completed and is making it’s cable tv debut in the Twin Cities tomorrow morning.

We’ll be uploading it to YouTube in the next day or two and I’ll be sure to post that on here. It’s been a lot of hard work but I hope this show will help families with a child they may suspect has autism.  It should prove to be beneficial too for anyone who just wants to learn more about autism.

I’m hoping to get this show into as many homes as possible whether through tv, internet, etc. I’m making a list of how to get the word out and I feel like I’m going to be something of a ‘media whore’ in the next few weeks.   I’ll be sure to let you faithful readers know if any exciting opportunities happen with “Surprised by Autism.”

A Preview of our Documentary

So in my last post I mentioned that I’m hard at work on a mini-documentary about our autism journey. My wife & I were interviewed recently for a local cable channel to tell our story and preview the documentary. You can watch the interview below.

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

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

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

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!

Faith In the Face Of Autism

Our church recently did a video on our family. They were doing a series called “Is It Just Me?” and over Christmas they did the final message called “Is It Just Me Who Struggles To Believe?” The message ended with this video that tells our story. Here it is below if you’d like to watch it. If you want to watch the entire message to see the context of how it fit in, you can watch it at this link. Just look for the “Is It Just Me” series and watch the Christmas service.

Hoping for an amazing 2009

So another year is rapidly drawing to a close. I have to be honest and say that 2008 wasn’t the best year of my life. 2007 didn’t end all that hot either as that’s when we first learned that Josiah had autism. I think 2008 started out ok because we were still so busy getting everything in place for Josiah and we had a hope that all the stuff we were doing would make a huge impact.

It’s not that good things didn’t happen in 2008. I think the reality just set in pretty hard that it’s going to be a long, uphill battle. I feel like everytime we’re making some progress up this ‘autistic mountain’ we get knocked down a bit. We inevitably get up and dust ourselves off and start trekking upward again, but we have some bruises and scars to show for the fall.

I was very hopeful at times in ‘08 when we thought we had really cleaned up Josiah’s gut and we were beginning chelation. But we eventually had to stop the chelation and now we’re dealing with yeast issues again. We’re hopeful that some changes to Josiah’s diets will bring great improvements this year. I’d like to say that I’m totally hopeful and excited to start some new changes, but frankly I’m just tired and I don’t have the wide-eyed hope I once did.

So I guess here’s some things I’d love to see happen in 2009….

–Josiah responds well to any dietary changes we make. He has such a limited diet now that I can’t imagine having to refine things even more, but we’re hoping that once the gut starts to heal, that he’ll crave the good foods his body needs. It would be good if this worked on me too…I could definitely stand to crave good foods. This holiday season has really added a pound or two to my six pack abs.

–I hope those above-mentioned dietary changes produce great results for Josiah. Who knows where he’d be if he hadn’t been on the GF/CF diet the past year, but he may even go farther with a more specialized diet.

–I’d love to see an explosion of language come from Josiah’s mouth. It’s so hard knowing that the words are there, but that he just can’t/won’t say them. I know it wouldn’t solve everything, but to be able to converse with him would make things a little easier. I so badly want to hear that little voice and know what he’s thinking. I can tell that a little jokester is lurking inside him and I want to be able to have the conversations with him that all of my friends with ‘typical’ 3-year-olds get to have.

–I’d love to see our new President be a champion for families affected by autism. It would be great to see all 50 states require all insurance carriers to cover therapies such as ABA. It would also be great to get insurance coverage for supplements even if they’re natural. Why we can get coverage for any old drug but not a natural solution is pretty crazy. Also, let’s get some funding dollars thrown in the right direction. Quit wasting time looking for the elusive ‘autism gene’ and fund things like what the Autism Research Institute is doing. Let’s clean up  the vaccines and give creedence to those who dare suggest that vaccines, environmental factors, and foods could be playing a part in all of this.

–I’d also love in 2009 to see fathers of autistic children connect with each other. I’m sure this is happening somewhere in America, but frankly I’m not finding it. There seems to be many websites that help mothers connect, but not the fathers. I know that too many fathers flee the scene or are just too busy working to pay for therapies, treatments, etc., but it would be great to encourage each other.

–I guess overall I would just love to see 2009 be a year of restoration and recovery for this family. I want Josiah healed, and I want to feel alive again. I feel like autism is besting me in this battle and something has to give. I truly believe that 2009 will be a very important year for my little family. If we can make it through this one, we might just make it through anything.