Mark Steidle and Tina Calabro

Mark SteidleEnlarged view of Mark Steidle

Transcript

This communication device is a Dynavox made here in Pittsburgh.  He is accessing this with a switch here by the left side of his head, and the cursor, instead of it being something that you move with your hand, it scans around the screen in a pattern.  When he wants it to stop, he clicks.  He has connection to the computer right there.  He has all of his school works in here.  so it operates like a computer, like a word processor, but with a lot of other things built in for speaking.

 

It’s not unusual for Mark to be taped, videotaped, audiotaped, picture taken or anything like that.  He’s quite used to it.  It’s very interesting, too, because it used to be, you know, a few decades ago, that also happened, but it happened more in the sense of the child being a poster child. The interesting thing about that is that those children grow up and they’re not cute anymore.  You know, they grow up to be adults, they get to be teenagers, they’re sweaty, they get zits, not cute anymore, and that is the reality, and that image of the cute child, people still use it today.

 

I probably had inclinations of understanding about these kinds of things before he was born, but I definitely came to understand it through him,  fortunately for us, when Mark was born there was a very well developed disability movement that I could read about, read personal experiences, meet people and find out what it would mean to have a view of being a person with a disability and raising a child with a disability, where that person becomes an equal member of society, a participating member of society, not a person who is pitied, separate, and so forth.

 And I sincerely saw for my son a different kind of future than the futures of people that I knew back in the fifties and sixties who had a totally different kind of future, a more limited future. 

 

How is the technology giving him the access to all of the other things that everybody else can do?  He’s a child in a regular school, regular class.  He has completed the seventh grade with A’s and B’s.  He does all of his work on the computer, through the Dynavox.  He takes music lessons, he rides horses, he ice skates.  He does all kinds of things and that’s why people are interested in my son, and rightfully so.

 

Mark:  Hi.  I think everybody should get a chance.

 

Hey, Mark, can you tell us how old you are?

 

Mark: Thirteen.

 

He had a brain injury at birth, during the delivery process, He was without oxygen for about ten to fifteen minutes, and so when he was born he was quite lifeless, and had to be resuscitated, and he bounced back after a few hours.  He was on a ventilator.      He did have some seizures right around the time when he was born, and those went away with medication, so he had some good strong instinct to live. 

So he bounced back, but the injury to his brain is in the area called the basal ganglia, and that controls the coordination.  All the motor coordination comes out of that.  He has a little bit different kind of cerebral palsy than the typical kind.  called athetoid CP.  
 
He has a lot of movements that are unintentional movements.  You know, his arms move a lot, his legs.  When he’s in a wheelchair, his positions and stations, so that he can control the rest of himself pretty well.  When he’s out of the chair he’s a little bit wild, you know.  Everything’s kind of moving.  But he really does try to work on controlling his movements through thinking about them and directing himself to the degree that he can.  He works at keeping himself calm.  He’s also on medication for his, uh, it’s called Dystonia, abnormal movements.  He gets a variety of orthopedic, physical therapy, all the usual things that have to do with maintaining your body when you have neurological motor impairment.

 

Mark: I like music, classical and country.  These artists are great.

 

There’s really a difference in your musical tastes.  So who turned you onto classical and who turned you onto country?

 

There are two important people here.  One of them is a babysitter named Joyce , who is a classical pianist, and she taught Mark everything about music since the time he was a baby, and she takes him to concerts still and teaches him music appreciation of classical, so he’s quite well-versed in that area and he loves it.

 

Mark: I am a music student of Jermey Sment at the Carmalt Acadamy. I have been interested in music since I was very young. Joyce introduced me to classical music, ragtime and the greatest musical artists of all time. My favorite composers are Bethoven, Bach and Mozart and I have attended many concerts by the Pittsburgh Sympathy. Jermy Smith has taught me to make  musical compostions. So please enjoy these two short compostions I wrote this year. Thank You.

Music

 

So, what school do you go to, Mark?

 

Mark: I am in the seventh grade at Carmalt Academy in Pittsburgh.

 

So, Carmalt goes to the eighth grade?

 

Okay.  He’s blinking at me, so –

And then, what’s next? Brashear.  

 

He has some options, which is wonderful.  We’re really city people, you know.  We love living in the city where families have a lot of choices about where they go to school, and this is also true for him, in light of his disability, as well.

 

In my experience, my vision for my child, which I bring to the school and to his IEP team and we come to an agreement about what his services will be, and where, what would be some good places for him to go to high school, and so forth, that we’re all in complete sync with each other, in agreement.  We have a terrific team that works on these things.

 

Now, where his disability would come into that would be, “What would be the best fit for him in terms of the kind of support that he needs.”  Some schools are not accessible.

 

One of the things that Mark is really good at is language.  He has languages in front of him all the time.  He taught himself to read with the Dynavox and everything like that.  So we’re really looking at that, and we’re kind of looking at the Science and Technology High School.

 

Another possibility is Kappa, and he has taken a tour of Kappa.  This would be in a Music Composition program, and so he’s preparing for that, in case he wants to go that route.
 
There are also International Studies, which is sort of a language concentration, and more kind of a global kind of orientation.  I mean, really, it takes Mark about three or four times longer than other kids to do his work and everything.  He, I believe, has the capacity.  If he had all the time in the world, he could probably be a top student, but given how much time it takes and how much, just physically, his engagement with the world, there’s things he doesn’t know.  There’s  concepts he didn’t learn about the world because he never was crawling around on the floor.  He never experienced them and some of those things come up.  We were doing some of that the other day.  We were looking at a test of some words and there were things he didn’t know.  Words like “ladle,” you know?  He didn’t know what a ladle was.  I showed him a ladle.  “Here’s a ladle.  What’s a ladle for?”  He had to think about that.  Like what is that for?

 

And there’s a lot of different ways to be smart, and one of the ways that I think Mark and a lot of kids with physical disabilities --  I can’t speak for all disabilities, but I can speak for kids that are more or less have to sit back a bit from the hectic pace of life, is that they’re very good observers of human behavior and other types of things, and understand a lot of things that are going on.  Mark is very sensitive to people’s emotions.  He really understands what people are feeling, and that he’s socially very advanced with adults, maybe not so much with his peers who are in constant motion and doing a lot of different things.  I mean he has friends, and so forth, but he understands adults very well.  So he has skills that have been developed because of the nature of his disability.

 

Interviewer: What’s been the biggest struggle for you in life?  

 

Mark:  see everybody being independent.

 

Interviewer: I don't know if you heard me while you were talking because he was having a difficult time thinking about what was his biggest struggle I said what makes you the most unhappy.

 

Well, I think for me personally,  there certainly isn’t any one particular thing that’s been the biggest struggle, because every step of the way there are struggles associated with every stage, every stage of Mark’s life, and soThere’s a kindergarten, the new school.  That’s always a challenge for everybody, but for Mark it was a huge transition with thirteen people sitting around the table discussing what was going to be the next step.

 

I found that when Mark turned ten, I found that that was a very hard moment for me because I had worked with him and with all these other people for a decade, and looking ahead to doing that for another decade was overwhelming.  It was just at that moment in time, I felt like, “Am I really going to be able to do this, to maintain all this energy and do all these things for another decade?” So that hit me pretty hard for a short period.

 

And then, you know a lot of these things, life has its way of smoothing them all out, not just because of time, but also because of what’s built into us as human beings, that just at the moment when I was thinking, “I’m not going to be able to do all these things for Mark,” he started to show me that I didn’t need to do all those things for him.  Because he was growing up.  I think that another thing that a lot of families notice is your marriage.  We have to work really hard at our marriage.

 

Twenty years.  We’ll be married twenty years this year, and it is extremely difficult.  Why is it difficult?     It’s the work involved that is incorporated into each and every day.  And it adds to everything else that we have to do or want to do.  And after a certain number of years of just jam-packed, we literally go from about six or seven in the morning till eleven o’clock at night.  Many days we don’t sit, except to sit at our desk to do work.  So that is the aspect of our lives that is very difficult, because when you’re really tired like that all the time, we’re super tired all the time.  We don’t have time for each other.  We’re like sick of each other.  So we have to work really hard to keep our relationship fine and stay pleasant with each other, not get too bossy about things that need to be done.

 

We do go out together.  We go out every Friday night. 

 

We have a lot of people helping us, too.  At any given time we have about four sitters.  Whoever’s available, they come in –

 

I’m going to ask your mom and you the same question.  What are you the most proud of?

 

You know, I want to answer that question by telling you what I heard somebody else say they were proud of,“I’m very proud of all my children.”  They have three other older children without disabilities, and they have the one with disabilities, the youngest child with the disability, and when he said that, “I just felt that that’s the greatest way to say it, that you are proud of all your children.  Without even talking about it any further.  You’re proud of all your children.

 

Mark: I’m making it.

 

Is that your answer, you’re proud of the fact that you’re making it.  Is that your answer?  Okay.

 

When you have a child with significant disabilities,  you really have to work the system to make sure you’re getting your piece of that pie. So the same thing that goes into all this educational advocacy, which is like they’re paying the bill, you’re advocating there and telling them, working with them to agree what you want for your child, and they’re going to pick up that bill.  It’s not going to cost you anything.  Outside of that system, you really have to advocate, and all of the families do, to make sure that all the various funding streams, that they understand them, you have to work it, and some people work it better than others. 

 

There’s a lot of parts of the safety net all over the place.  There’s social workers in schools, developmental advisors, you know, all of the approved private schools  for kids with disabilities.  Social workers and that type of --  so I think there’s a lot of people that don’t lack the support.  I think it’s just --  it reflects how complicated our system is, that we have to have people.  The complication is good and bad, because we have all these systems, all these things you can get to help make your life better and easier, but you have to work hard to understand it and to participate in it.  You almost need somebody to teach you or help you do it, but I think that it’s not that people are without the help. 

 

It’s just hard.

 

But one of things that I tell families, because I talk to them a lot, and it’s not to like say, “Look how good that I’m doing,” but it’s to say, “You’ve got to work harder.  I’m sorry, but yes, it’s difficult, but there’s no other way.  If you want that outcome, you’ve got to understand that nobody’s going to hand that to you.  You’ve got to study it.  You know,  you’ve got to work harder.  You’ve got to spend two or three hours a night with your child on their homework.  You’ve got to program the Dynavox.”
 

Tina, who has been the biggest influence on you?

 

I think Liz Healy.  I think there are many many people, but I think I have to put Liz above anyone because of her passionate belief that in the right of every individual to be included in any and all aspects of society.  That there is absolutely no justification for excluding anyone from participation in society.