Saturday, October 19, 2013

Knocking down walls.

Wade and I are in Milwaukee, WI for the 67th annual meeting of the Academy for Cerebral Palsy and Developmental Medicine.

This is Wade's 9th year to attend. I have been fortunate enough to accompany him four times. He is busy at these meetings -- they aren't just a social event for him. He is passionate to lecture on his own research to improve the care of children with Cerebral Palsy around the world; he is passionate to HEAR the research being done in Canada, Australia, Denmark and all over the US and World that will help him polish and refine the care he gives his patients and the research that he continues to do to improve the quality of life for children and families alike. His days this week started before dawn and went late into the evenings. I arrived late Thursday so that we could speak together at the academy's Family Forum -- an opportunity to encourage families like our's that are walking, rolling and embracing this adventure of parenting special children.

We planned to meet in the convention center Thursday evening where many of the research posters were on display. I was not officially signed up for the meeting so my exposure to the research was limited to perusing the posters that evening. I was overwhelmed. As I wandered from display to display, examining research done in Boston, Phoenix, Sweden, Australia and so so many more, I became emotional about the brilliant minds dedicating themselves to improving life for my children.

Wade and I had the distinct privilege to join some of these amazing minds yesterday in addressing the Family Forum. I was by far the soft sugary filling between the brains as I shared a bit of our story -- a little glimpse at who we are as a family and what my children have taught me. It was my hope to encourage these Mamas in my few minutes of sharing -- to hug them with my words and let them know that they are not alone in traveling this road. My beautiful daughter has asked me to share my words here -- and while I can not recreate the talk verbatim, I can share my main points here along with the slides that played throughout my speech. (And just so you know, the slides have little to do with my talk...I just wanted the audience to have a visual of my beautiful kids!)

There is so much of my story I want to share. But time is short so I can not possibly cover it all, please know that when this photo was taken, I thought these were the hard days. I believed that once the days in the NICU were behind us, so was the hard stuff. Like many in this room, that would not be our reality.

At nine months of age, we knew the boys were not meeting the same developmental milestones that their sister was -- so would begin the long process of examinations and therapies and a final diagnosis of Cerebral Palsy. But today is not the day for that story. I want to fast-forward 16 years where we just returned from visiting our Alma Mater so the triplets could have a college tour.

I have to tell you that I loved college. I met my husband there. I made lifelong friends there. I had so much fun. And I even learned a bit. As a result of my love, I am full of absolutes about college life: You must live on campus. You must be part of this organization. You must do this...and on and on. And even as we walked around campus I recognized that there were more barriers to be knocked down for my children as they approach college and just like is so often the case, they begin with ME!

My paradigm -- my idea -- of what college should look like may very well not be the reality for my boys. Their physical limitations alone will mean they can not duplicate the experience their father and I had at MSU. So listen when I tell you, that THIS may very well be the hardest part of parenting special needs children:

Our paradigms do not work. Our expectations influenced by our very own life experiences probably have very little to do with the reality our children will face.

I believe the first barrier we have to knock down as parents is our own expectations.

When my trio were four, I was still operating under my own ideals, my own model of what the future should like for them. I refused to allow our physical therapist to use the word wheelchair in front of my boys. Refused. Mason was already using little loft-strand crutches at this point (We called them power sticks.). He was fairly independent and so they didn't discuss a wheelchair in reference to him often. 

Benjamin used a walker. When I say used, I mean I would set the walker down and set him in it and tell him to go, go, go. Fifteen minutes later, an exhausted little boy would arrive at the door to his preschool ready for a nap. But, he was walking and I refused to discuss the dreaded wheelchair.

It was the exhaustion that finally broke down my walls. Benjamin couldn't concentrate in preschool because the act of getting inside was so laborious. How could he possibly learn in kindergarten if he was so exhausted? And so cautiously, Wade and I began to whisper that maybe we should consider a wheelchair.

The day we went to try one, my Benjamin -- ever intuitive to my emotions -- looked at me and said, "But Mommy, I walk. I don't need that." I desperately wanted to agree, scoop him up and leave. But then he noticed the joystick. And well, the little boy thought joysticks were all that -- he wanted to try. Within minutes his face lit up as the son of mine realized that he could navigate his own space AND talk at the same time.

We ordered his first chair that same day.

And so this wall that I had protected, fortified and practically landscaped around for FIVE years was knocked down with the smile of one little boy whose personality exploded when he could move around his own environment and entertain the masses simultaneously!

Unfortunately, when that wall fell all sorts of new ones popped up -- we needed a van to transport the chair, we needed ramps, and knowledge of every elevator in town. Ya'll know.

But by first grade, we thought we had the logistics figured out. We thought we were doing pretty well. Until the day Benjamin got in trouble in school.

My boy needed a bathroom break that was apparently inconvenient for his teacher. He and his aide would quietly leave the classroom, go to the restroom and rather than wait for his aide, Benjamin would zoom back down the hall eager to return to class. The problem was that his teacher required the door to remain closed. He couldn't get in. So he did what any bright 6-year-old would do -- he came up with a solution! If he gently rammed the tray on his wheelchair into the door it would "knock" and alert his friends to open the door. He was pleased with himself. and frankly, I was pleased with him too. His teacher, not so much.

After several days utilizing this "solution" the teacher contacted me to tell me this was a problem and we would have to come up with an alternative. I was not happy. I thought she was harsh to Benjamin and so I was fairly fuming that night at home.

 So I wasn't surprised to hear Benjamin crying in bed. I rushed in, Mama Bear ready to assure her son that she would FIX the problem the next day.

Benjamin: "Mama?"

Me: "Yes, sweetheart, what is it?"

Benjamin: "Mama, I'm worried."

Here it comes I thought, "About what, baby, I can fix it?"

Benjamin: "Mama, I am worried that when I get elected president of the United States they won't let you live in the White House with me."

Do you hear my boy? Some walls are only in our imagination. At six, Benjamin had no walls. He didn't say IF he is elected president, he said WHEN. There were no limits in his mind as to what he could accomplish. Not even one.

Ten years later, I desperately want Benjamin to believe he can accomplish anything he sets his mind to. The process of becoming a teenager seems to rob our kids of some of their "I can do anything" attitude and so I am eager to re-infuse them with that. I find myself pointing out role models everywhere I turn:

Benjamin, did you see know that doctor in St. Louis has Cerebral Palsy?

Benjamin, did you see that comedian on TV has Cerebral Palsy?

Benjamin, did you know there is a judge in Phoenix with Cerebral Palsy?

And my son looked at me this summer and stopped me in my tracks:

"Mom, why do you only give me role models with Cerebral Palsy? Don't you believe I can do anything?"

See, here's the thing, Benjamin knows there are physical walls he will have to knock down. He knows that living on a college campus will require some special adaptation, some unique out-of-the-box thinking and some hard work. But his point is well taken by all of us: He wants to be successful or fail as Benjamin. He wants to make friends as Benjamin.

The bottom line for him is that he never had the walls in his paradigms that I have in mine. He doesn't have unrealistic expectations of himself, or his abilities. He knows what he is capable of and knows if he sets his mind on the presidency of the United States Cerebral Palsy will not stop him.

If you take anything from our time today, let it be this: Cerebral Palsy should not define our children. As parents, care-givers, therapists and doctors, it is our job to knock down the walls, do the research and find ways to help our kiddos accomplish their goals. But it is also our job to help others see them the way Benjamin is screaming to be seen, with NO walls.


Always a Southern Girl said...

Awesome Carol! You inspire me. :)


andre pizon said...

exciting his testimony, we are free to dream and conquer what we want. God bless you

andre pizon said...

exciting his testimony, we are free to dream and conquer what we want. God bless you

Anonymous said...

This was such an amazing speech! Nice seeing you!