Written in honor of Austin Shaumeyer

"Doctor, my son, I'm worried, he doesn't speak." Doctor’s reply, "Don't worry, big brother is doing all of the talking, it will come in time."  This was at age two. Doctor there is something very different about my son. He screams all of the time, kicks the walls and he still, doesn't speak. Doctor's reply," I see a child throwing a tantrum and some boys just talk late." This was at the age of three years old. Then I said, "Doctor, what is Autism?"  This day, my journey with living with Autism began.

Ladies and Gentleman of the Missouri Autism Panel,

My name is Debra Shaumeyer and I am the mother of 6-year-old Austin Shaumeyer.  Austin Shaumeyer was diagnosed with Autism in July 2005. I'm here today to share with you my families' and my difficult experiences with Autism. It is my hope that you will listen.

I learned about Autism from a family member.  Coincidentally, around this same time a neighbor was speaking to me about Parents as Teachers.  I said, "What is that? What do they do?" As the screening and testing began, my heart grew heavy.  I turned to the Internet and GOOGLED Autism and found a CHAT test online.  Chat is a checklist or screening tool that I found for early detection of Autism.  This test confirmed my worst fears. The dreams and hopes I once had envisioned for Austin Shaumeyer was lost that night after taking that test. It was a mourning that words escape me to describe. 

Its now 2007, 2 years later after the dx and still I'm scrambling for that knowledge, for those resources to get him the early intervention that he so desperately needs. It's a fact that Early Diagnosis can lead to long-term outcomes of Independent Living, Employment and being a viable part of Society.  It's a fact that Early Intervention including Behavioral Therapy, Speech Therapy, Occupational Therapy can successfully transform our children.  It's a fact that Effective Treatments of researched based methodologies such as Applied Behavior Analysis work and should be used with our children.

When I found out Austin had Autism from the hospital, I was given a sheet of resources to contact and was told to go see my Early Childhood Center, they can help me with my son.  This road has been a nightmare. I went to my school district for help.  There we were able to develop a 13 goal IEP program with the bar set way too low. My son has no verbal communication at this time and  I express to my school district, “Look at this medical report, my son needs at least 25 hours of individualized instruction per week.  My school district "doesn’t agree".  My school district gives my son the One Size Fits All program. My son is barely making progress.  My husband and I deal with our school district that does not currently provide our son with an appropriate IEP or individualized education program. ROAD BLOCK. This is very frustrating and we are helpless and hopeless.

My husband and I tell ourselves, we will go thru our private insurance.  Surely our health insurance we provide for our children and ourselves will cover Autism. If the school won't help us, we'll find another way.  This is not the case.  I arranged Speech therapies for Austin and all we could afford was 1 session per week.  Only one session per week. I filed claims with our health insurance.  Our health insurance states it covers Speech and Occupational therapy for Autism.  I filed claim after claim and appeal after appeal.  There was nothing resolved except my empty bank account. No coverage was given for Autism. ROAD BLOCK.

We applied for help with our local Kansas City Regional Center.  There is a 3-year or more wait list.  Far past the "early intervention" hopes that my husband I have for Austin.  We applied for Social Security Disability, but my husband and I make the extra $800 per month of income that doesn't allow us for state help.  My husband and I are good, honest and decent people.  We pay our mortgage, our car payments, and our utilities.  My husband and I make a decent living, but when we were told our son had Autism our debt didn't disappear.  So, we re-financed our home so we could pay for extra therapies and early interventions for him. When that wasn't enough, we turn to our credit cards to help pickup the slack.  ROAD BLOCK.

Please understand and listen when I tell you how stressful and hurtful Autism can affect a marriage.  There is nowhere to go for counseling.  We have joined support groups.  Most of the topics at these groups don't focus on how Autism affects you personally and a marriage.  There are arguments and disagreements about finances, school districts, employment hours, long term goals for our son. There are arguments and disagreements about the various different types of meetings that we as Parents need to attend. I'm never home because I'm fighting for my son.  80% of Marriages affected by Autism end in Divorce.  I don't want mine to be one of them.  ROAD BLOCK.

The CDC confirms nationwide that there is 1 in 150 children diagnosed with Autism.  It's also confirmed that 1 in 94 boys will be diagnosed with Autism.  This is affecting families in the State of Missouri and affecting families right here in Kansas City. I want you to know that Autism is affecting my family.  

Ladies and Gentleman of the Blue Ribbon Panel.  You have a burden of decisions to make in the near future regarding Autism in the state of Missouri. My husband and I plead with you, listen to what we have to say. Currently at this point in time, I can be certain that this journey of Autism I'll follow, until the day of my death.  I am my son's voice when he cannot speak. 

Thank you for your time.

Debra Shaumeyer