About Little Up

by Stacey Paige Stevens

Paul Stevens, aka Little Up, needs no introduction. No, really…If you, or any other stranger, happened to be in the grocery store (or any other place) at the same time as Paul, he would march right up to you and say, “Hey der!”. If you ignored him, he would happily continue to the next person with a friendly face and introduce himself. (Needless to say, it is impossible to go anywhere incognito with Paul.) If you responded positively, he would continue with “It’s a pleasure to meet you!” and extend his hand. If you took his hand, you might inquire about something simple such as his name or how he was doing. He could answer those types of singular-response questions with loud enthusiasm.  If you asked him a more complex question such as, “What are you doing today?”, he would stumble on that. This is where I would come in and answer for him and offer pleasantries so we could all get back to our grocery shopping.

You see, Paul was born with Williams Syndrome. Williams Syndrome is a genetic disorder that occurs sporadically in approximately 1 in 10,000 births.  We were made aware of Paul’s condition when he was about 2 hours old. The doctors recognized his pixie-like facial features and heart defect upon birth and ordered a genetic test. This “Fish Test” confirmed that Paul has an absence of part of the number 7 chromosome, which confirmed that he had Williams Syndrome. As we scoured the internet twenty-two years ago, we learned that children with WS tend to be overly friendly and would have learning difficulties and developmental delays and many medical complications.  We have had and are still having to deal with all those tendencies.

While I have been busy worrying about the ongoing doctors’ visits, the therapies, the dealings with special ed, the frustrations dealing with Medicaid/Medicaid Waiver Programs, becoming legal guardians, Social Security, setting up a Special Needs Trust, etc, Paul is not worried about anything at all!  Paul is the happiest, most well-adjusted kid you will ever meet! His needs are simple: family, cokes (he gets one a day), and “circles” (he likes to carry about 50 ¾” washers in his hand). Paul’s idea of the perfect day would be to have his birthday party (one of his favorite subjects) with his entire family where he would open endless “expensive presidents” (presents) of cokes and circles. 

When not partying, Paul now spends his days at Summerhouse Houston. Summerhouse Houston is a day program for young adults with disabilities. Summerhouse focuses on teaching Paul repetitive job skills so that he can volunteer at local charities such as Houston Food Bank and Meals on Wheels and others. He is showing signs of requiring fewer prompts and less support to keep working. I like to remind Paul that when he works hard at Summerhouse, he helps people, just like a fireman. (Paul loves firemen and fire trucks too!) When he is not volunteering, Summerhouse takes Paul and others to enjoy many social activities such as visiting museums, the beach, bowling, movies etc.  Paul comes home happy and tired. I’m just thrilled that he has found a place where he is happy, but also where can contribute to society. I hear of kids with disabilities (and without) who sit at home and play video games all day.  I didn’t want that for Paul.

I will admit, however, that Paul is capable of watching YouTube videos of purple-haired gospel singers such as The Gaithers for hours on end. He watches all the videos millions of times and never loses his enthusiasm for them. His grandparents taught him to love Jesus and gospel music. I like to think that Paul has a direct line with God-one that is not crowded with the worries and complications of life that the rest of us have. Paul doesn’t ask for anything from God. He just loves Him. Wouldn’t that be wonderful if we all did that?