Monday, January 26, 2009

Who Cares About Me

written in 1992 on behalf of my daughter Rebecca


I am but a little girl
Who's life has taken a different twirl
I am disabled, that's what I'm labeled
I am trying so hard to be able.
I am fed different than my friends each day,
for me it is the only way.
Mom worries for that day,
that nobody will want or care to pay.

They say dollars have all but dried.
They say everything needs to be cut.
The programs that help me have to be shut.

The doctors and home healthcare help me out.
My therapies and medicines I cannot be without.
My braces and wheelchair help me about.
My glasses I cannot see without.

School budgets are already stressed.
My needs are trying to be met.
It costs a lot to educate me.
With so many students,
How will anything be left for me.

I am a little girl who fights to be alive,
But without healthcare, I won't survive.
With all the wonderful care
I have thrived.
My family and I have always strived.

Without help we won't be able to cope.
We cannot give up hope.
There is a choice.
Just listen to one little voice.

I am just a little girl who wants to be,
as happy, healthy, the best little girl I can be.

copyright 2006 Ann Yurcek
An excerpt from Tiny Titan, Journey of Hope

The Cost

This weekend I was visiting my favorite frugal websites and discovered a post about a family that is auctioning off their belongings to pay for therapy and services for their two special needs children. The website asked for people to help by donating a couple of dollars to defray the cost of their childrens services. See the families story here

As I read the comments, I was heartened by messages of those individuals who donated, but I was struck by the misconceptions of several of posts. Several thought they did not need the help because early intervention and the schools would provide therapy. They thought they were begging for help or using the media. But I understood their dilemma. I know just how hard it can be to obtain help as I have often had to battle insurance companies, schools, bureaucratic red tape for Becca and also my adopted children with Fetal Alcohol Spectrum Disorders.

Years ago when Becca was a baby, we had insurance, and found ourselves the victim of two insurance companies and no one would claim her, my husband would lose his job because of our baby's bills. We had to fall onto Medicaid and into poverty to get Becca's hundreds of thousands of medical bills paid. I was paying for daily parking at the hospital and after months of not eating to pay for gas and parking, someone finally told me that they had forgot to give us our free parking voucher. Jim and I were skipping meals in order to give what little food we had to feed our five other children. I just told them I would eat later and dole out the rest onto their plates. Our heat was turned off, we boiled water on the stove to bathe our children and wash dishes. Minnesota falls are seldom warm and our heat was finally turned on right before Thanksgiving when we were finally reimbursed for our mileage to the hospital. We had to live on a mere pittance to qualify for Medicaid at that time and only allowed $800 a month for a family of 8. Our house payment was $822.00, we still had other bills. What were we to do? We did whatever it took to help Becca.

No one told us about other programs, I had to learn as I went. The complexity of programs, what it takes to qualify, paperwork, appointments, luck of the draw when it came to waiver services, all just to help our Becca. I had to do all this while in crisis with a critically ill baby, and five other children who needed a Mom. There was not enough time in the day, and in time I learned that my job as a Mom was first, but I had to have another full time job, advocating and fighting for my daughters care.

No one knew. Those closest to us were unaware until years later. Inside the walls of our suburban home we were struggling, we were ashamed that we could not afford to pay for the care of our sick baby. We were judged by the workers at the social services office that we did not belong there, we had a job. We were judged by our neighbors for not driving the newest vehicles and our children did not have all the latest toys, sports and classes, my children skipped lunch because they did not want to be teased because they were on free lunch. Reaching out for help is not easy. It takes courage.

We had helped Becca survive, and I fought long and hard for her care. The medical world has in recent years become harder to navigate. I never used to have to work so hard to get what she needed, but today it is becoming increasingly complicated. When I entered the mental health when we adopted our 5 children I never dreamed it would be this hard. It is literally impossible to get the therapy our children. When Becca was diagnosed as autistic it took 6 years of advocating and appeals to get the school district to acknowledge the diagnosis.

Reading the post, watching the news article, I knew that I could help. I would help this family by acknowledging that our children's catastrophic medical and mental health needs are not being met. It takes a full time job, and often a law degree to find funding. Sometimes it requires creative ideas to meet our children's needs. I talked to a parent who has a little boy with severe cerebral palsy and she talked about the many times she has had a garage sale to raise money for something that he needed. She at times has had to do fundraisers to obtain a piece of equipment that neither the insurance company or the medicaid program would not pay for.

Doing whatever it takes for our children is just part of the job description. Sometimes it is fighting insurance companies, falling into poverty, selling off our belongings, going without. But what is the most hard part of the journey, the judgment of others who do not understand just how hard it all is. These tough economic times and our crisis in health care and mental health services and therapies for our children with special needs. The schools are stretched and it is becoming increasingly difficult to get adequate help for our special needs children. But those children grow up and we need to help them with the therapies, services, and teaching to thrive as adults.

What can we do to help? Sometimes it takes strangers to donate a few dollars, others to share a listening ear, sometimes just a hug, other times a bag of groceries or even buying a house for a family who lost everything due to children they raise. We need to speak up to reach out and care, to support, not judge or just ignore. A genuine smile when you see a special needs child or mom will go a long way to say you care.

Thank you to Angie at Baby Cheapskate for reaching out to extend a helping hand to this family and it is my privilege to help. I have offered to give anyone who donates $25.00 or more a free copy of our families story "Tiny Titan, Journey of Hope". I can help raise awareness of just how hard it all is and share the stories of our Angels who helped us along the way.