My Autistic Boy And Other Adventures In Fatherhood

Everyone, Meet David Gayes….

I feel that I am very lucky this week to post two interviews. Earlier this week you read Michael Boll’s interview about his autism Podcasts, and today I would like to introduce all of you to David Gayes.  

David and I had our Web sites highlighted on the AOL Ability Channel on the same day in Novermber of last year, and I was immediately impacted by his blog’s enthusiasm and his effort to convey his message about his life to the world.  You can see this in his smile and eyes from the photo above.

It also seemed ironic to me that our Web sites are very much akin…his just happens to be first person from the experience, while I’m first person dealing with the experience (that’s one way to put it on a Thursday morning)…and both are positive in showing that, “hey, life is life..it is what we are trying to do with it that counts!”

So I reached out to David to be interviewed. He’s not autisitc.  However, I think you’ll find what he says below to be of value to the readers of this blog that are, or care for, special needs kids. I don’t think it is too much to say that we’d love for all of our kids to grow up to be alot like you David in outlook on life…and I think we could all learn a bit from you.

Except that Chicago Bears thing. 

Enough from me - Folks, here he is straight from greater Chicagoland….David Gayes.

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I am taking a year to interview people with disabilities about their perspectives living with a disability. I want my interviewees to share personal stories and anecdotes from their daily lives.  In my blog, I reflect on the issues brought up in these interviews.  Occasionally, I post other disability stories that I find interesting, important, or insightful and, here and there, a story from my own life.  As I say in my blog profile, I believe society often underestimates the complexity of living with a disability - the joys, the challenges, the ordinary, and the extraordinary.  There is a tendency to define people with disabilities as either pitiful or inspirational.   Neither is true.

I am 21 years old and live in Chicago, Illinois.  I am a triplet.  I like sports - particularly following my Chicago sports teams.  (Da Bears are going to win the Super Bowl!) I’ve been singing in choirs for many years, and I currently sing in my church choir. I also like to travel.  I took a wonderful vacation to Yellowstone this summer.  Yellowstone is a beautiful park and is wonderfully wheelchair accessible.

As triplets, my sisters and I were born prematurely.  At some point before or after birth, I had damage to my brain.  The brain injury of cerebral palsy is caused by a lack of oxygen and causes the brain to send undesirable messages to the muscles.  It does not get better or worse, but the effects on my body can change with daily use, therapy, surgery, growth, and aging.  In my body, every muscle seems affected in some way.  My condition is called spastic quadriplegic cerebral palsy. 

One of the hardest parts of my cerebral palsy is the pain that the spasms cause - particularly in my back, neck, and hips.  Also, spasms in my diaphragm muscle cause problems, but because I am a singer, those problems are less than they could be.  I have had a lot of physical therapy which has helped my function and decreased the number of surgeries that I have needed.  Another hard part of my cerebral palsy is my limited stamina.  It is frustrating to tire so quickly when I have things I want to do.

I use a lot of equipment to help me with my daily activities.  To use the computer, I use a combination of one finger typing, Soothsayer Word Prediction software, and Dragon NaturallySpeaking.  Also, I rely on a Kensington trackball. I use Dine with Dignity silverware to eat, but that can be a hassle; I prefer to just use my hands.  I get around with my Permobil wheelchair, a wheelchair which has the advantage of allowing position changes.  Because my eye muscles tire easily, I listen to books on tape.

When I was very young, my cerebral palsy was just not relevant in my life.  To me and my sisters, getting around with wheels or by legs was like having brown hair or red hair.  Yes, the differences existed, but there were much more important things to think about like playing make-believe, singing songs, or reading books. 

It wasn’t until I went to school that I realized I was “different”.  And in an ableist society, such a “difference” is negative.  I was forced to face some of life’s difficult lessons at an early age and head-on.  It seems to me that society often wants to put down those who have a disability.  In addition to my family, my church plays a role in helping me address who I am.  And the principle I am seeing is that each of us has human dignity, disability or not.  Diversity is not negative.  In fact, it’s positive.

Another lesson my disability teaches me is to “think outside the box”.  When I make a decision, whether it’s how many classes take or what activities to pursue, I think about what works best for me, rather than what everyone else is doing.  Throughout grade school, I was schooled in many different ways depending upon the circumstances each year.  For high school, my parents and I looked at the priorities regarding my body’s needs, my school needs, and my social needs.  We decided that I would go to school for half a day.  It took me six years to finish high school.  It was difficult emotionally to not graduate with my peers, many of whom I had known for 12 years.  However, I believe my parents and I made the right decision. Staying two extra years in high school allowed me to give my body the rest and exercise that it needed, to take an honors philosophy class and an AP Spanish class, and to have a little time for friends and fun.

I am spending one year on this project.  Next fall, I plan to go to college.  I enjoy history and Spanish, but I have no idea what my major will be.  I’m not sure what to do with the project at the end of this year.

You didn’t ask, but I thought I’d share my thoughts on parenting a child with a disability.  (I’m obviously not a parent, so take what you want from these.)

1.  Most importantly, love your child.  Even as a little child, there are constant threats to self-esteem from many sources. 

2.  Respect your child’s dignity.  Your child will learn self-respect from you.  Help your child’s see that he or she is not the disability. 

3.  Think of experts as tools in the toolbox.  Use their skills and talents as you see the need for them, but don’t feel like you have to do everything they say.

4.  Trust yourself and your child.  Be willing to think “outside the box” to meet your child’s needs.

5.  Respect your child’s disability and the gifts that come from it.  Your child will learn things that you can’t imagine because you don’t have that disability.  You don’t have to understand all of these gifts, but be respectful of them and learn from your child.

6.  Network with other parents facing similar challenges that you face.  Share ideas and experiences. 

7.  If appropriate, foster friendships for your child. When I was little, playing at my house often seemed to be the only way to be really included in peer activities.  I remember eagerly looking forward to my birthday parties. Whether it was playing freeze tag in a swimming pool, going to a Chicago Wolves ice hockey game, or playing basketball with a hoop that was lowered to my level, I had good times with my friends, playing games suited to my abilities and going to events that were wheelchair accessible.

8.  Everybody makes mistakes.   Learn from them and move on.

9.  And finally, I just thought I’d throw this one in - give your child ice cream whenever he or she wants.

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David: we have ice cream every night after dinner. Demetrius is especially keen to white (vanilla) and pink (strawberry). Thank you so much for taking time to give us some of your extremely insghtful thoughts. 

I listen to this podcast everytime it is posted in my iTunes, and as I posted the site last week, this is the interview with the host, Michael Boll. Enjoy, and go listen!

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My name is Michael Boll and I host a podcast (Internet Radio Show) about autism. I have a seven-year old son on the spectrum and this podcast is my way of learning more about autism and sharing it with others. You can listen to the show and learn how to subscribe (don’t worry it is free) by heading to www.autismpodcast.org

If you are new to podcasting, it may comfort you to know that it is pretty much the same thing as a radio show, yet distributed differently. Instead of playing on a local radio station, a podcast is pushed out via a website and/or an MP3 player such as an Apple iPod. Listeners may choose to subscribe to the podcast and have each new show automatically downloaded or simply click on the link to listen to a show on the website.

· Most of us that publicly discuss our ‘autism situations’ do so through blogs or other ‘written’ media/communication tools? What made you think of podcasting, and all the technical aspects of it?

I have always been a bit of computer geek and I had been interested in putting together a podcast for a while. For some strange reason I could not figure out what to podcast about. Then it hit me (Duh!), why not do a podcast about autism! It has really worked out for the best too. I have been able to interview all kinds of parents, therapists, doctors, etc. It has allowed me, and the audience, to explore the huge variety of therapies out there and the feelings of parents with kids on the spectrum.

· I believe I read that you were a former teacher, so you aren’t a technical studio guy by training, right? Do you have help putting these together? How often do these podcasts take place?

I am ABSOLUTELY, not a professional studio person. Really, this whole podcasting thing is super easy and rather cheap. People have told me that the show has good production value, but I only use a $70 microphone, Skype, and some free open-source software.

The podcasts generally take place on a weekly basis. I try to keep a couple of weeks ahead so I can have some flex time and take a week off now and then.

· What’s your response/feedback been? Is listenership good? Growing? Do you find certain subjects, like say, nutrition, draw a bigger audience than, like say, dealing with your HMO?

The feedback about the podcast itself has been really positive. Once in a while the guest might offend somebody though. This is particularly true if someone talks about a cure for autism. The adults with autism, and some others, can be really offended by that term.

Generally, though, I try to present a balanced set of programs and allow the guest to fully communicate their views. I want the listener to make up his or her own mind.

Listenership has been on a nice steady increase. This seems to be a result of some of the more popular guests linking to the site and sending traffic our way.

· If your son is verbal, and able to participate, have you ever thought of including him on the show?

My son is verbal, but not to the degree that we could have a conversation. That would be a blast to have him on the show; perhaps someday! I have had some adults with autism on the show and that has been a lot of fun.

· What do you want this to be when it grows up? Get some sponsorship dollars? Possibly move over to mainstream media?

I like the way the show has evolved: slowly and easily. My listenership has gone from 30 downloads a show in the early days to upwards of 2,000 downloads for the most popular shows. The idea of making money on the show would be nice, but I like where it is now.

I do it for free, am able to book most anybody I ask, and don’t have the pressure pleasing a set of sponsors. I would like the show to become more popular, but will likely never go after sponsors. As I see it, I am getting a million dollars worth of free advice every week!

· What are you learning? The more I talk to people, the more I realize there are those out there that will forget more about specific parts of autism than I will ever remember. Do you get a lot of ‘Ah-Has’ hosting this show?

I get an “ah-ha” about every show. Or, more often now, I get an “Oh shoot, I need to do that again” moment. Seriously though, there is a ton to learn out there and I am always ready to try something new after each show. I wish there was less to learn and that just one therapy would fit all, but autism seems to be very individualized when it comes to which therapy(s) works best.

· With our son, we’ve overall had a pretty average (ups and downs) experience in his first two years in the county’s school system. Being a former teacher, and probably going through this, what’s your experience with the school district where you live?

Actually I live in Colorado. My school district, Cherry Creek Schools, has been a mostly positive experience. We have had our moments with a teacher, but are satisfied overall. I think it helps that my wife and I are both teachers and can relate to our son’s instructors.

We have worked very collaboratively via our half-day home program and half-day school program. I feel comfortable telling my son’s teachers that I had a less than successful day with him and then seeking their advice. I hope they feel the same way. As teachers, we know that things do not go well all the time and we want our son’s teachers to feel that they can tell us when something did not go well and we won’t freak out.

· Do you, professionally and personally, feel that school districts are doing a good job integrating spectrum kids into the classrooms? If not, what do you think they could be doing better?

At my son’s school they seem to do a very nice job integrating him into the classroom.

The same goes for the other kids on the spectrum too. Having an autistic kiddo in a classroom seems almost more normal than NOT having one. I can’t speak authoritatively for other school districts, but I do hear lots of horror stories from the parents I talk with. Money is the main issue and the better-funded districts simply do a better job of complying with the law.

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Thanks again, Michael. And folks, once again, the URL is www.autismpodcast.org.

1.    John, give us a little background on you, and why you decided to start the NMML?  I became an advocate for the disabled in the wake of 9/11.  The events of the day made me frustrated when I was about to retire (from Delta as a pilot).  I knew sitting around would drive me crazy.  I wanted to do something constructive. 
2.    What have you seen that has surprised you over the course of time? I had no previous experience with people in the disability community and you parents have totally redefined 24/7 and unconditional love.  You folks are the silent (perhaps too silent) heroes in our community.  People have no idea how your lives where changed when your child was born or injured.
3.    I read that a similar league has been started in Dallas/Fort Worth, modeled after the NMML?  Do you think what has been done here has the legs to be done in every major metro in the USA? We are working with 29 other organizations across the country. Delegations have come from all over the country to visit our prototype facility.  We provide them with power point programs and blue prints to get them started and continue to support them through out their development.

4.    So where does it go from here? There’s a bowling league, swimming – what’s next, what do you see in the future? The out door multi purpose sport court will be in by next summer so we can offer adapted versions of basketball, tennis, volley ball, soccer and football. We have funding from the Atlanta Falcons and the federal government (CDBG Grant).  The concession area will finally be fully equipped by the end of the year. Our long-range plan calls for a $5,000,000 indoor facility.
5.    How has dealing with these children and families impacted you?  How do you think you’ve impacted them? Working on this project has become an obsession.   Merrily and I get our energy from the players.  There isn’t one of them that have not found a way to enrich our lives or teach us something new and important.  They will do that to anyone if they are only given the chance.
        One of the most important changes was my ability to now see the person first and not the disability.  In the beginning I seemed to always see the disability first. Now the disability is still there but is has moved into the background and I am able to see the person. The disability is now just a fact and no longer an issue or barrier.
        I hope Merrily (my wife) and I have brought some sense of “normalcy” into the children’s lives and the lives of their parents.  Now kids and parents are doing things they thought were impossible or just not accessible.  They are doing things that should be a part of every child’s growth and development. I think we have created a comfort zone and a learning laboratory that changes the way people think about themselves and others.  Perhaps now the greater community is more willing to include, accommodate and value members of the disability community.
6.    What do you say to people who say that you, and what you’ve done with the NMML, have made a difference in their children’s lives?  Do you ever sit back and contemplate that? Sometimes Merrily and I are so busy that we don’t realize what has evolved with our help and the help of so many other generous and talented people.  We have seen it grow inch by painful inch so the impact of what is out there isn’t the same to us as is would be to a person walking into the facility and a game day for the first time.  We are very proud of our part in creating the NMML, we are also humbled by what the parents do every day of their lives.  That is much tougher on the heart and mind that what we do. Perhaps is some way we are trying to honor the parents as well as serve the kids.

    Let me tell you about how it impacts us: Every Saturday morning Demetrius gets up and he basically is so excited he yells everything…from his breakfast orders barked at his mommy to talking back to the TV while watching cartoons.  He talks constantly about ‘Jonathan’ his helper, his baseball game, and wants to know when its time to leave.  We get to the field and he runs around and smiles and actually tries to play catch with Jonathan…and can’t wait to bat (he doesn’t like to practice this at home…I have the sneaking suspicion he likes the crowd clapping and cheering him on at the field, which he doesn’t have in the front yard).  When we get in the car to leave, he asks the same question every single time – Do I have another game tomorrow?
    For me, I had visions of the end of ‘The Natural’ with Demetrius when he was a baby – tossing the ball back and forth with my son.  It isn’t quite that with Demetrius, but when I see him trying to actually do so with Jonathan and the other kids, well, I realize I’m having that moment in a very different way.  And John, without the NMML, I wouldn’t be able to get that.
    NMML allows everyone there to smile and cheer for these boys and girls on a sunny morning.  Moms, Dads and the kids – we all get something out of it.   Everyone has a good time, and for most of us, it’s as close to a ‘normal sports experience’ we’ll ever have with these kids.  It’s big in their lives, allows many of them to experience what all the other kids do in their schools…well, I could go on and on…but mostly let me just say thank you for all you do with the NMML.

Chris Peterson’s written a book entitled Boy Wonder and the Big Burns.

It chronicles an experience of his, over the course of years, of finding a way to reach his autistic son and bond with him through some shared, and albeit unique, experiences.

The story’s unique to most of our own because we don’t have the majestic backdrop of Glacier National Park, as Chris does, and we can’t capture the stunning photos as he has of what the shared experience looks like, from a professional photographer’s perspective.

I reached out to Chris a few days ago to see if he would be interested in sharing some of his experiences with me, as his story so closely identifies with the goals of this blog. Here’s our exchange:

Chris, as you were exploring nature with Boy Wonder, when did it dawn on you to take these experiences and put them down to paper, or laptop, and write a book?

I had an idea for a book on wildfire all along, so when I started working on the project over the course of years (namely taking photos) it was just natural to include him. I mean, he went on damn near every hike, so how could I leave him out? He saw what I saw. He lived what I lived.

Rebirth is a theme constantly intimated at throughout this story…in both the park, yourself and in your son as he consistently comes out of his shell…is there a moment when this all comes together? Where it seems like the regenerating forest and you and your son, seem to reach a place that was before unreachable?

It was a slow progression. Early on the hikes were fairly awful. He was slow, he’d stop and play in the dirt or drag a stick or … the list of obsessive compulsive behaviors he overcame looking back at it was significant. By last fall, when he was 7, he was doing much better. Hiking about five miles with no problems. We play this game called Monster, where I’m the monster and I’m chasing down the little kid. He loves it. He’s also beginning to understand why we’re out there. For example, he were tromping around this patch of woods where these owls have been known to frequent and I turned to him and said “What are we looking for?” And he replied, “Owls.”

The great part of this story, to me, seems to be the fact that this is an endlessly new cycle for the two of you (except your ability to keep up with him as he seems to want to go farther and farther!) what do you think is next, and where do you go from here (literally in the forest and figuratively in your relationship with your son)?

We’ll just continue to hike together. It takes 80 years for a forest to regrow. We’re just along for the ride. I am planning a sequel to the book, however, provided we don’t get chewed on by a bear.

What do you feel that readers of this blog, parents of special needs kids and those with just regular boys and girls, can take away from reading this book?

Get your kids away from the TV and walk. We didn’t just walk in Glacier, we utilized local parks and creeks and streams and other trails. Start out with something flat and easy, a mile or less, then build up on it. Visit you local park. Check out a patch of woods. It will do you, and your child some good.

So you’ve done what many of us wish we could: explain our feelings, angst and happy surprises dealing with our autistic children… for the average joe. But what keeps you up at night now?

You know, I sleep pretty well. Love has to be unconditional.

Any advice for us on what we can do with our kids to try to find a similar experience as you found with Boy Wonder in our lives in the ‘burbs and cities?

Like I said earlier, find a park and start to walk. Climb a tree. Wade a stream. Watch a bird. Catch a fish. Nature persists just about anywhere.

Finally, how can folks reading this blog research and buy your book?

My Web site is www.glaciergeographic.com. You can buy it there or write me at 8013th St. East. Columbia Falls, MT 59912.

Thanks for taking the time, Chris.