Wednesday, February 8, 2012

Time Is of the Essence...

Time is an amazing concept for humans and perhaps the most intriguing is time and it is impact on the evolution of children with special needs. When I was new to the field, I would say with great confidence where I expected and hoped my patients would be in one year -- five years. I am a born optimist so I always expected that my special kids would accomplish much. Their parents were dedicated and focused on helping their children reach their potential, and I was lucky enough to understand the connection between brain, developmental progression and success many years ago. Thus I was off and running with each and every new patient and family. And, I loved it!

More importantly many patients surprised me, awed me with their accomplishments like no one expected! Most of all their specialists or the school systems!

When I started in this field, I loved the little ones and the more complex kiddos because I loved the challenge. At first I was planning to follow my patients until they were five years old.  But as they grew developmentally both the families and I learned that
time to develop for all children is precious and when used wisely everyone profits.  Families wanted to stay and I wanted the kids to do their best and learn with them, so five became ten and then ten was 20 years!

But what never ceased to amaze me is just how much children can do when we -- the adults -- help them get it right!

I am sharing two separate stories that in so many ways have the same process, both with great outcomes -- but also very different in their own way.

I met a young boy with XXY when he was toddler and he was a challenge but his family never lost sight of his potential. We tweaked with different services and different learning environments, we wrestled with the school system who often wanted to watch rather than help, but we persevered with the belief that it would come together and pay off if we worked together. We gave him the right support at the correct time based on his brain, his disorder and my knowledge base. Sooner perhaps or later he would blossom!

In the meantime, we would be there no matter what. Eventually he grew and middle school was very challenging, insurance companies had to be threatened and endless school meetings were held. Sometimes it looked like trouble found him no matter where he was!   Indeed he was a boy and a middle schooler so in some ways it meant he was growing but all of us had pains
SO we waited, worked and remained focused on his competencies knowing the frontal lobe of his brain would grow. Here is the amazing part -- he is now in high school, he grew almost 12 inches in less than 18 months and so did his brain!

He is doing well, he likes school and his confidence has soared. Some challenges remain but he is coming into his own. He has friends, he tried out for swimming and although he did not make the team -- he did fine handling the disappointment. Yet just few years ago school looked dim, socially he was isolated and personal responsibility was a word for adults and not this GUY! Time, fighting through all the necessary battles and the utilization of proper services based on syndrome specific goals -- and he is reaching his true potential.

My second story is perhaps a bigger accomplishment with even bigger challenges. I met my little Italian boy with Down syndrome many years ago -- he was beautiful and sweet beyond words. Faithfully, he came to see me every year and his mother's motto was elegant in its simplicity -- she wanted him to do his best and she would take care of the rest.

We worked together to defy the stereotype of his disorder and propel him to new heights. He read and he became more and more independent. He had a crush one year on an older school counselor and he found a girlfriend.  He went to different schools at various times to achieve his greatness, some with inclusion, some self contained. When it was necessary to push him further he went to boarding school.

He grew and he learned -- often more than even anyone expected. Fast forward and he is now in his 20's, school is over and new challenges lay ahead. My Mr. Dan lives in sunny California in a semi-independent setting. This new setting presented some new issues and sometimes significant setbacks until those setbacks were understood in the proper light. 
In many ways it was like he went off to college! He rebelled and ate junk food until all hours of the night. He gained the freshman fifteen. Maybe even more but he had more freedom. He even "no-showed" for work! Maybe more notably at times he refused to follow the simplest directions. It seemed like perhaps semi-independent living, his new job, managing his own schedule, and arranging for his own transportation to take him to his job, was too much! But time and trust worked when the adults remembered the simple fact that goals had to be individualized, measurable, and specific to him just like in school, even now in his 20’s! WHY? Because it leads to success and growth for anyone and everyone!

His mom and I worked with the residence, and took it step by step and without fail Dan rose to the challenge -- he made the big leap to taking care of business with just a little help from his friends!

I recently made a site visit and here is what I saw. Dan manages his apartment with another adult, and he holds two part time jobs, one at Law firm and one at Wal-Mart, He arranges his own rides to work. He also has a girlfriend and is arranging to celebrate their first anniversary together!

Time has been good to both of these kids. Dan defied all the odds because his mom only saw his potential, his competency and never his disability!  My other young man with XXY was fueled by a father who had the patience of a saint with every system and great confidence that his son would indeed "get it!" Time --- Expertise -- Hope -- Patience -- Confidence -- Competency -- the super bowl of recipes for success regardless of who you are or what you want to do! NO matter how old you are.

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