Surprised by the Response to ‘Surprised By Autism’

Watch it online at surprisedbyautism.com

Watch it online at surprisedbyautism.com

A couple of months ago, my husband (a television producer on a local suburban tv station) released a 30-minute documentary featuring our story so far with autism. It wasn’t an easy task he chose to take on. It was a labor of love, and he had some days he wanted to scrap the whole thing. “It’s hard to live autism at home, and then have it invade my work too. I just can’t get away from it,” he would say. But, I’m so glad he did because it’s helping people.

The Little Show that Could

The initial plan was that “Surprised By Autism” would air on his channel for a couple of months, and also on the metro access channel schedule periodically throughout the month, but in the meantime, it’s grown legs. I has shown on channels in some 30 or so states in the country now. It’s gotten nearly 850 views on YouTube. The DVD is in several libraries in the midwest, and in the Minneapolis Hennepin County Library system, my husband discovered that it had 24 holds on it! He mobilized to send them more copies stat.

“Surprised by Autism” has been featured on some autism blogs, in a few newspaper articles, and we know of at least one organization in our homestate in North Dakota that has showed it to its support and advocacy group, and requested handouts that they would give to everyone to point them to our www.surprisedbyautism.com website to watch it online. More handouts have been given out at an Autism Carnival Day in the St. Paul area. It’s also been used by college professors, and by students giving Masters’ presentations. We’ve heard of people who have passed it on to family and friends they know who are in the same boat.

I think our little documentary helps to fill a big hole, especially for parents that are still shell-shocked after receiving a diagnosis. Shows all about biomedical only give a little of the picture. Shows simply about what autism is feel so clinical. Shows about grief and the loss of dreams can leave the vibe of having shown “Schindler’s List” to a group of people in POW camps. Ouch. I think “Surprised By Autism” interviews enough professionals to get an idea that there are more options than just 3 hours of therapy a week, puts a face to autism that may not be as “extreme” but is real for the majority of families, and conveys that we parents can still have what so many people seem to unknowingly want to strip away from us: HOPE!

Please Do Get Your Hopes Up

When we first got the autism diagnosis, my husband and I attended a 4-week class through our county that was put on by the Autism Society of MN. While I appreciated the crash course in autism and the great desire to help parents navigate through it, it also left me at times more shell-shocked and terrified. On the first night, they showed a video that must have been from the early 1980s and came out of Canada that followed the grieving process of four families dealing with autism. As we got a big eyeful of what our little two-year-old was likely going to grow into, and how all of our dreams would go up in smoke, I just wanted to die.

The parents in this video had words on their lips that said, “We’re coping through this,” and a look in their eyes that said, “Please give me a pitchfork so I can fall on it.” I don’t think approaching a group of parents who are just finding out their kid has autism in this way is okay. The person who facilitated the group says she wants to “rip the bandaid off” first to get at reality and reveal the raw pain and loss of dreams, and then they can get on to some therapy and coping options.

In our society, why do professionals that deal with us feel like they have to put out a “I don’t want you to get your hopes up” sentiment. Why shouldn’t we get our hopes up? Tell me why it’s better to live defeated than to be propelled forward with hope that there is some way, some how that our children will improve and that we will have a hope for a future. Some other parents dealing with autism also can put out a similar feel at times, and they can be so sour towards those want to hope and keep trying for a better outcome. Please be a person who points to hope, who supports through the realities, and believes in the uniqueness of each child and their ability to rise above the limitations that we may be tempted to put on them.

Make a Choice Today

I remember reading Victor Frankl’s Man’s Search for Meaning when  I was in college where he recounted the experience of being in a Nazi concentration camp, waiting for someone to come liberate them. Those who gave up hope died in their spirit and ushered in an even quicker physical death. But there were those that even in the worst circumstances kept faith every day that someone would come liberate them, and it changed their attitudes so they could act and feel differently.

Frankl said, “What was really needed was a fundamental change in our attitude toward life. We had to learn ourselves and, furthermore, we had to teach the despairing men, that it did not really matter what we expected from life, but rather what life expected from us.”

If our “Surprised By Autism” show could do just a little of that for parents dealing with the shock of their lives, and give them a reason to mobilize and to always hope–choose to hope every day–we will have fulfilled that labor of love.

Hope deferred makes the heart sick,
       but a longing fulfilled is a tree of life. Prov. 13:12

Advertisements

3 Responses

  1. My son was diagnosed with PDD-NOS since he was two, and every time I get that five axis diagnosis sheet, I am STILL surprised by autism. There is a level of acceptance that all parents must come to terms with when their children have any chronic condition. For me, it’s been a long road though I am more comfortable with it now than I was three years ago. My in-laws live in Hennepin County. Next time I go up, I should see if I could check out the DVD.

  2. I am not surprised by “Suprised By Autism”‘s success. 8)
    It is a wonderful video, Joe’s love is evident (and yours, always) and even shines through the “information.” And of course, the boy on the cover is the cutest!

    “Please be a person who points to hope, who supports through the realities, and believes in the uniqueness of each child and their ability to rise above the limitations that we may be tempted to put on them.” Amen, sister!

    Choosing HOPE!

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: