Yesterday I met Patti Vasquez in the Capitol. Patti is a WGN Radio host, comedian and
mother of Declan. Declan happens to have disabilities so when Patti heard about the cuts to
disability services, she had to do something. She is now broadcasting her radio show from
the Capitol, attending legislative hearings and talking to legislators! One Mother’s advocacy
on the behalf of everyone with a disability. She made my day.
You can listen Patti on WGN Radio 720 AM at 11:00 p.m. She has a lot to say.
Here is her essay that she wrote when she learned of the budget cuts.
Or, Patti recently broadcast the audio version on WGN so you can listen if you prefer:
http://wgnradio.com/2015/05/08/never-by-patti-vasquez/
Tony
NEVER
Recently, a man called my radio show and asked, “Why do I gotta pay for autistic children?”
We were talking about the proposed cuts to social services for the lllinois 2016 budget and
his question threw me off briefly, as I caught my breath. I was at a loss for words, which is
never good radio. Of course, there are people out there who see the disabled as a burden.
I imagine there are more than a few twisted individuals who resent their existence and wish
individuals with handicaps would simply disappear. People who think those things have
never actually expressed those thoughts to me. Or near me for that matter.
Also, I had no idea this man was single handedly paying for autistic children. I guess that
would feel burdensome.
I couldn’t answer him articulately. While I verbally stumbled around trying to find the right
response my producer, Craig Collins, asked, “Why pay for anything?”
I snapped out of my stupor. Yes. Why pay for anything?
Yes, the State of Illinois is broke, yet we seem to be rolling along somehow. Are we really
going to throw our most vulnerable aside to be less broke?
I can tell you why we must continue to fund services for our most vulnerable. To quote
State Senator Dan Kotowski, “When you invest in people you save lives.”
Early Intervention is a program that saves lives. Before July of 2005 I had never heard of
Early Intervention. Every state in the country has Early Intervention. The Federal mandate
allows each state to set it’s own guidelines.
Here’s the mission statement for Early Intervention:
â–ªenhance the development of handicapped infants and toddlers and to minimize
their potential for developmental delay,
reduce the educational costs to our society, including our Nation’s schools, by
minimizing the need for special education and related services after handicapped
infants and toddlers reach school age,
minimize the likelihood of institutionalization of handicapped individuals and maximize
the potential for their independent living in society, and
enhance the capacity of families to meet the special needs of their infants and toddlers
with handicaps.
For people who are familiar with the program, it means something has gone horribly wrong
for their child.
In July of 2005, my son Declan was born medically fragile. He was unable to breathe on his
own, he had low muscle tone, he needed a feeding tube, and his doctors were not sure he
would survive. The neurologist told me if Declan did survive he would most likely never walk,
talk or progress past the intellectual capacity of a two year old.
Never is a hard place to live. Impossible, in fact. During the 28 days Declan was in the NICU
I slipped in and out of depression. I was consumed by fear, guilt and regret. The notion that
Declan’s illness was my fault gnawed at me when I was at my weakest. The terror of the
unknown was debilitating. I couldn’t imagine raising a child who might never walk or say
“Mommy.”
Declan finally came home with us and the responsibility of ensuring the survival of this
vulnerable baby was daunting. He was hooked up to a heart monitor twenty four hours a day,
which meant I was awake almost twenty four hours a day fearing that his heart would stop.
There were nights when I lay in the dark wishing I didn’t have to be this mommy. Wishing I
could just disappear. Not exist. Whatever that meant. I never thought about killing myself. I
simply didn’t want to “be” anymore. This life felt beyond hard. It felt overwhelmingly
unbearable. I was crumbling day by day.
In the daylight, I went through the motions of being a mother, wife, woman, and comedian.
I was functioning, barely.
Please let me say, for those who know me well- I know this may be hard to imagine. My
friends and family think of me as strong, funny and brave. The first months of Declan’s life,
he was the fighter, not me. I was hanging on by a thread. I was living in “Never.” My son
would never do all the things I dreamt for him as I carried him for almost nine months.
Besides the grim future laid out by our neurologist, there were so many things he would
never do. He would never swim. He would never play baseball. He would never go to college.
He would never get married. He would never, ever be the little brother I imagined for Griffin.
I couldn’t live in “Never.” No one can.
During these early months, a group of therapists were dispatched to my home to help Declan.
A physical therapist, developmental therapist, speech therapist and occupational therapist
were each assigned to see Declan one hour a week in my home. At first, I flinched every
time the doorbell rang for Declan’s therapy. His sessions were grueling for both of us.
Little did I know that Early Intervention was the lifeline we both desperately needed.
By far the hardest sessions to endure were with Sara, the physical therapist. She was
demanding and aggressive. We butted heads more than once. Declan started crying
whenever she walked in the door. I often wanted to do the same. Watching her put my baby
through the paces while he cried and reached out for relief made me want to scream.
Ultimately, Declan’s greatest early achievements were a result of Sara’s dedication.
She often told me that Declan was capable of so much more if we could help him focus. I
couldn’t hear her through the terror echoing in my skull. “What difference does it make?” I
thought. “He’s never going to walk.”
Each therapy session felt like a reminder of the neurologist’s prognosis. A long list of
never.
One night, as I lay in the darkness, desperately trying to relax and failing, I felt complete
hopelessness. Declan was almost six months old and he was not making progress. This
was it. My life unfolded before me. Endless days caring for a child who would not get better.
I knew in my heart I could not do this. I could not be this mother.
And then. Declan cried. In the darkness, he needed me. I picked him up and laid back
down with him on my chest. All at once I felt better. I could breathe. I felt whole. Moments
before I was empty and now I was complete. There’s a name for these moments, I guess:
grace, epiphany, enlightenment. It was definitely one of those.
As I held Declan I realized I was engulfed in worrying about all the things he couldn’t do and
I was missing all the things he could do. He could giggle at his brother. He could splash in
the water. He could fill my heart with joy. He could make progress. If I could stop worrying
about all the things he couldn’t do and start loving all the things he could do, then that was a
place I would be able to live.
And I thought of Sara telling me he was capable of so much more. If we could only help him
focus.
The truth was, I needed to focus.
I began to concentrate on progress rather than failure. Every time an Early Intervention
therapist rang the door bell rang it was a chance to for Declan to learn something new, to get
stronger, to reach his potential.
The day Declan took his first steps with out a walker, just a few months shy of his third
birthday, Sara and I screamed with joy.
I often scream with joy for Declan. It makes him giggle when I do. Like he gets the joke. We’re
not quitters and that’s something to scream about.
There were so many reasons to celebrate in the three years we worked with Early Intervention.
Declan learned how to swallow on his own. He learned how to pick up Cherrios between his
thumb and forefinger. He learned how to clap. You don’t know how huge those victories can
be until the possibility of ever achieving them is removed from your world. I carry Declan’s
victories with me every day.
When I heard that Governor Rauner’s budget proposal included a sixty-six percent cut to Early
Intervention I immediately thought about all those nights when I feared the worst. These cuts
will plunge 10,000 families into darkness. It will weaken those who already have so little left in
their reserves. I may not be a wildly successful businessman and I may not have billions, but I
do have a voice. I, along with many other parents, friends and families, will say “never” to
drastic cuts in critical social services.
We cannot impede the victories of families who fear the worst for their children. Early
Intervention, The Autism Program of Illinois, The Epilepsy Foundation, Respite Care. These
are programs that support families like mine and they are all on the chopping block.
Yes, the state of Illinois is broke. That doesn’t mean we’re broken. We can and must do
better for our most vulnerable. We should “Never” let them down.
Tony Paulauski Executive Director
The Arc of Illinois
20901 S. LaGrange Rd. Suite 209
Frankfort, IL 60423
815-464-1832 (OFFICE)
815-464-1832 (CELL)
Tony@thearcofil.org
