FOCUS understands and supports the unique needs of families with children who are medically fragile or have significant developmental or physical disabilities. FOCUS offers comfort, hope and information to parents; accessible recreational and social programs for children and teens; and fun, inclusive activities for the entire family.
I am proud to Host and Emcee the Focus gala honoring Skip and Angie Weiland. Their cumulative work with Focus spans years and years. I wanted to share Skip’s speech during a FOCUS gala that is an inspiration for anyone with special needs children.
Pinball Wizard….
by Skip Weiland
Parent Speaker at the Annual “For the Love of Children” Dinner, Dance and Silent Auction
“He seems to be completely unreceptive.
The tests I gave him show no sense at all.
His eyes react to light the dials detect it.
He hears but cannot answer to your call.
His eyes can see
His ears can hear his lips speak
All the time the needles flick and rock.
No machine can give the kind of stimulation,
Needed to remove his inner block.
I often wonder what he’s feeling.
Has he ever heard a word I’ve said?
Look at him now in the mirror dreaming
What is happening in his head?”
That conversation between the doctor and Tommy’s father in The Who’s 1969 rock opera might well have been with one of our doctors as we frantically searched for answers to the physical and cognitive delays of our son Bret. In the story of Tommy, a deaf, dumb, and blind boy creates a following by mastering a pinball machine, and the world discovers the beauty within of a special person that can only love. In the story of my son Bret, our family and friends have discovered the beauty within ourselves by sharing the love of a child who, like Tommy, seems deaf, dumb and blind, yet amazingly, he finds ways to express himself and bring out the best in all of us.
As many of you, we understand the everyday challenges of raising a child with special needs. Going to dinner, a movie, or on vacation as a family can be difficult, to say the least. Bret’s brother and sister have missed their fair share of events due to a canceled babysitter, or an episode of undiagnosed, hysterical screaming, as we worried a neighbor might call the police for child abuse. I know I’m not the only father here tonight that changes diapers for a 9 year old, or gets kicked in the groin by the right foot while frantically trying to get the left shoe on in time for the school bus.
That said, I can’t imagine life any differently. Like Ashley Smith, who said she believed she was chosen in order to end the violence of an armed gunman, maybe we, all of us here tonight, were somehow chosen to share life with some very special people who help US to see, and hear, and speak. It is us that ASK of our children: “See me, feel me, touch me, heal me.”
When I was asked to speak tonight on how my life has changed since the birth of my special needs child, I was thrilled. What parent does not like to speak and brag about their children? Last weekend my wife, Angie, yelled from our son’s bedroom, “he pulled up to standing by himself, come see this.” The joy and amazement in her voice was unmistakable. We had waited nine years for this. Yes, nine years, not nine months.
Our son Bret turned 9 in March. He is extremely delayed both physically and cognitively, and has no diagnosis. After an unremarkable pregnancy and delivery, we were shocked into the reality that this was not the vacation we had been planning! Indeed, with a list of ailments like hypotonia, strabismus, pervasive developmental delay, severe curvature of the spine, this has not been a vacation at all, rather “a long strange trip.”
Well, our unexpected “detour” put our entire family into a new and unfamiliar world. We were told to start therapies when Bret was five months old: physical therapy, occupational therapy, and speech therapy. We have never stopped. I sometimes wonder if I could find a new career as a backpacking therapist. There’s been a trip to Florida to investigate hyperbolic chambers and several trips to swim with dolphins. Parenting a special needs child is not a job, it’s an adventure!
Has my life changed? Without a doubt! Spending a week in the hospital when our son stops eating and drinking because a cold turns into the flu can be a bit overwhelming. When Bret screams with pain, but can’t tell us what hurts, our stress level becomes a bit elevated. Other times, when I pick Bret up, and he puts his head on my shoulder, and pats me on the back, I’m in heaven. When aunts, and uncles, and cousins, and friends come to our home, and get on the floor to play with Bret, I couldn’t be prouder. When my 17-year -old son and 15-year-old daughter hug and kiss their 9-year-old brother, I swell with pride and joy.
My life has changed in more ways than I can say. Most of the changes have been positive, some have been more difficult. All in all, I feel very fortunate. I’ve met some beautiful people and seen some true miracles these past nine years. Through FOCUS, we have discovered our extended family. We share our children with other special families, and we are privileged to meet typical families that share their time with our community. At FOCUS, it seems there is always someone who has already experienced our current catastrophe.
The FOCUS monthly respite program allows families, like ours, four hours to go to a movie, or dinner, or just time to give some special attention to each other. Today, it allowed me clean up the house and then chauffeur Bret’s sister, Rachel, around while she discussed the meaning of life on her cell phone with a friend she was meeting 10 minutes later at the mall. When I dropped Bret off this morning, HE was overjoyed to have a little respite from the rest of his family. Each summer, at FOCUS Camp Hollywood, our children have the opportunity to experience a week of art, music, science, cooking, and other cool projects at summer camp just like any typical child.
On behalf of my entire extended family, thank you all for being here tonight and for your continued support of FOCUS. I see the world quite a bit differently today than I did nine years ago. Now, I seem to see a little Pinball Wizard in all of us.
You can learn more about FOCUS and their endless love HERE.
Watch my most memorable images of my Dominican Republic mission trip with SERV International.