Why I Fight

April 3, 2015 was world Autism Day. I dressed my boys in blue shirts and I pulled out one of my many blue dresses. That’s about it. I didn’t post anything on social media. I didn’t install any blue lights. I didn’t go out of my way to read anything about the growing population of children and adults with autism.

I know the numbers. 1 in 68 children,1 in 42 boys.

In my house, the autism rate is 1 in 2 boys.

Autism affects my family 100 percent.

Those are my numbers. I am acutely aware of autism and to me World Autism Day was just another day. I didn’t think much about it because, well, I think about autism everyday.

April 3rd was also Good Friday. April 3rd was the beginning of Passover.

Late in the afternoon of April 3rd, Passover, Good Friday, and World Autism Day, Governor Rauner’s office suspended 26 million dollars in funds for the funerals and burials of public-assistance recipients, smoking cessation programs, after-class tutoring for at risk children, teen programs, autism, HIV programs, epilepsy programs, and many other services across the state.

The news sounded disappointing, but I didn’t worry about it too much. It sounded like the Governor was using social programs as a political chess piece. Surely, he was just trying to play hardball; show us he was willing to make tough cuts if legislators didn’t start cooperating with him. Besides, it was Easter weekend. I had eggs to color with my boys. We went to church. Ate ham. The Easter bunny was generous with treats and toys. We had a lovely weekend.

On Monday morning, I received an email informing me that TAP, The Autism Program of Illinois, was closed by the state. It sounded terrible, but again, I assumed this was temporary. That Governor sure knows how to play hardball, I thought. He’s using programs for children with disabilities to scare people. I’d seen this before though. Seemed like just last year several politicians dangled programs for children as leverage. “Do what we want, or the kids get it!” seems to be a common negotiating tactic. I signed the petition demanding that funds for TAP be reinstated and then found other distractions like work and family.

During the next few days, I followed the story and it seemed as though the Governor’s office was standing firm behind the decision to cut grants. I put it out of my mind. After all, they’ll work it out. It was spring break and the boys wanted to play in the park.As I pushed Declan in his favorite swing, a mom came over and asked me if my son had gone to Beard, a nearby school with an excellent program for children with autism. She told me that her son recognized Declan and we began talking about where our boys had ended up after being forced out of Beard with the mandatory cutoff of 3rd grade. We lamented the lack of support through the transition process; she was struggling with her son’s new program.

Then she said, “On top of all that, Easter Seals had to cancel his social skills program because of the Governor’s cuts. We were working on waving and high fives. It’s part of his routine and I don’t know what we’re going to do. Plus, they laid off a bunch of the employees. It’s so upsetting.”

I gave her my email address and told her I would try to find out more information, but her words stayed with me for hours. I couldn’t imagine losing one of Declan’s programs. I knew it would derail so much of what he has achieved. He only learned how to point last year. I dream of the day when he waves hello or good-bye. At the age of nine he has yet to speak a word, but I never give up hope that I will some day hear him say “Mommy.” I know from experience that any disruption of his therapy would push my dreams further away and the ensuing dread would most likely consume me.

I was beginning to realize that these cuts would not only hurt families, it could destroy them.

Then, I spoke to a friend and fellow special needs mom, Holly Simon, who told me about her friend who has a severely disabled daughter. Her daughter requires around-the-clock care and the mother relies on a professional respite worker so that she can go to work. The aide is paid partly through insurance, with a supplement grant from the state. The mother received a call earlier in the day informing her that funds for the respite worker had been suspended and they had to terminate the position. The mother was distraught. She would no longer be able to work and she was terrified about what might happen next.

All at once, I had the realization that this was happening in homes across the state of Illinois. Parents lying in the dark, while their children slept, trying to imagine how they were going to survive. What were they going to do without the services they relied on the most. My certainty of their despair is the recognition of my own fears. Countless sleepless nights with my eyes wide open staring in to an abyss of the unknown. At night, when everything is quiet, I worry the most. Am I doing everything I can to make sure Declan is getting the right therapies? If we were rich, would he be doing better? Did I miss anything that might have helped when he was younger? Is it my fault he has autism? Will his brother Griffin be able to have a full life or will the weight of having a severely disabled brother prevent him from achieving everything he dreams about? What will happen when I die? Will my beautiful blue eyed boy, who seeks hugs and dances to Mozart, be loved as much he deserves?

Yes, “worry is the greatest thief of joy.” I fight worry back with everything I have and some days I come up short.

But on other days, I rise above the noise of doubt and find a path forward. I feel compelled to do something to make sure families like mine are not sacrificed in political battles over budgets. Yes, Illinois is in a crisis.  But who are we as citizens of Illinois if we toss our most vulnerable aside in a quest to save the strongest?

I travelled to Springfield on April 14th, attending the Senate Appropriations Committee hearing on whether the Governor had the authority to suspend grants for critical social services. Several mothers joined me including: Holly Simon (whose son Nate has green eyes, a magical smile and Downs Syndrome) and Joanne Guthrie Gard (whose daughter Erin has an amazing sense of humor, loves the Blackhawks, and has epilepsy.)

Sitting in on the hearings gave us a glimpse in to what lies ahead. There are legislators willing to fight tooth and nail for programs that provide a lifeline to families throughout the state. Conversely, there are those who will fight just as fiercely to “move on” and leave those families in despair. Presumably, they strive to avoid suffering cuts for themselves or their friends.

It is apparent to me and my fellow travelers that there is so much more work to be done. As we search for a balanced way forward, Illinois should blend fairness with compassion.

I want to know that I live in a state where the health and welfare of children and adults like Declan are a priority. Presently, they seem to be, at best an after-thought, at worst a political weapon used to instill fear and inflict pain.  I want to know that when I am gone, someone will hug my son and dance with him.

I want to know I live in a state that lives up to the promise set forth in the preamble of the Illinois Constitution:

We, the People of the State of Illinois-grateful to Almighty God for the civil, political and religious liberty which He has permitted us to enjoy and seeking His blessing upon our endeavors-in order to provide for the health, safety and welfare of the people; maintain a representative and orderly government; eliminate poverty and inequality; assure legal, social and economic justice; provide opportunity for the fullest development of the individual; insure domestic tranquility; provide for the common defense and secure the blessings of freedom and liberty to ourselves and our posterity – do ordain and establish this Constitution for the State of Illinois. 

 

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