Where the pieces come together

Be-Gabe-01Gabriel is now 13-years-old, our walk with autism has been a better gift than I could have ever imagined.

Gabe has shown me how great my family is, and how wonderful and blessed we are to live in a community that cares so much about their neighbors.

Autism has brought me to the classroom as a mother and student searching for answers, and as a teacher being a part of finding those answers for others. My love for my son, my Gabe, has forced me to make a difference in the community I call home. I don’t want another family to face the uncertainty we faced.

When he was a little boy, Gabe was the happiest baby you’d ever know. He only cried when he was wet or hungry. We called him our golden child. He was easy.

At one, he wasn’t speaking or responding to his name. Something wasn’t wrong with my son. Something was different.

I started to search for an answer. At first, I did get answers: more testing, more testing.

Eventually I was told my Gabe heard things, but as if we were all speaking underwater. Then, I was told he was mildly mentally handicapped. But I knew my boy. These diagnoses didn’t fit. These weren’t his issues, so I searched more.

Gabe began speech therapy and developmental therapy through First Steps to address his developmental delays. The therapist helped us view Gabe’s challenging behaviors as a form of communication.

Finally, I made an appointment for Gabe with our pediatrician and went into the appointment alone. I frankly asked, “Does he meet the DSM V requirements for autism or not?” I did not care about a label. I wasn’t trying to force the doctor into giving Gabe a label. I was searching for an answer. My son needed therapy to develop life skills and language, without a diagnosis the insurance would not pay for therapy. The doctor said he would review Gabe’s chart and mail a letter.

The letter came: “Gabriel Hughes meets the DSM V requirements for autism.” I sat on the couch alone. I stared at the words. I picked up my phone, but had no one to call. My family was busy caring for my father who was terminally ill with lung cancer. And my husband, he was literally in a hole on the frontlines of the war in Iraq.

I dropped the phone and I began to pray, “Please Jesus, place the people in Gabe’s life that he needs to be the man you created him to be.”

Through tears I wrote another letter that would inform my husband of the diagnosis. He didn’t know what autism was and neither did his fellow soldiers. Not one. He thought it might be a terminal disease. There he was in the middle of a war in the Middle East thinking his son might die in Indiana.

Finally, he was able to call on some special phone that was like talking over a fax machine. I didn’t cry. His life was in danger everyday. I remember thinking on the phone I can’t sound weak for Willis. I was strong for him for that two-minute conversation, and then I hung up.

I was told that ABA was a recommended treatment for autism, but, unfortunately, that was not available in our area. This was heartbreaking. I felt I was failing Gabe in some way because treatment existed… just not here for him.

A lot of people might look at what I did next as being strong; they might call me a fighter, but I don’t look at it that way. I did whatever it took to help Gabe and never stopped.

The diagnosis “autism” was new to a lot of families in Muncie at the time. People had heard of it—I had, too—but in terms of finding out how to raise your child, or what to expect as they got older, or how to encourage their siblings to play with them? There were no answers.

We needed a support group where we could get together and ask questions. We needed to learn from parents who had gone through the testing and the therapy sessions. With the help of Delaware/Blackford County School Corporation, I connected with a few other parents.

I wasn’t sure who if anyone would come to that first meeting in 2005. We ran out of chairs! It was standing room only!

People had plenty of questions and some had answers. We had each other to lean on and that made the biggest difference in the world. We could be honest with each other about how tired we were and how sometimes we just didn’t know what to do with our children.

One day I was trying to think of a good name for the group. I turned to my mother and asked for terms related to puzzle pieces. She said, “Interlocking puzzle pieces do not come apart once they are put together.”

This was perfect! Interlock, “where the pieces come together,” was the start of a solid foundation that I believed families like mine needed as much as I did.

At our Interlock meetings we connected to learn from and to make a bigger impact on each other and the community.

The passion we had for our kids was contagious. We held walks to educate others and to educate the East Central Indiana community.

We helped others who needed expensive items they couldn’t afford; maybe extra childsafe locks for their homes or specialized headphones for trips to the grocery store.

I continued to search for answers not only for Gabe, but for all the families in Muncie who couldn’t afford services due to insurance issues.

I continued to search for answers for families who needed legislators to understand autism is real and our children deserve the best services out there.

I continued to search until I decided this was my new life. Working to give families the best of everything they need was my new love.

I received my Master’s degree in Special Education at Ball State. I went on to become a Board Certified Behavior Analyst, and I’m currently working on a Ph.D. at the Chicago School for Professional Psychology.

Working with Ball State University, Department of Special Education, Muncie Schools, the amazing parents of Interlock and other community organizations, I helped develop an autism day camp, autism training for the Indiana State Police and EMS, and an ABA Clinic.

Today a parent can pick up the phone and have someone to call for support. A parent can go online and find answers at www.interlockin.org.

One day, my son Benjamin asked me, “Mom, how do I find out the purpose God has with my life? I see God wants you to change the world of autism.”

That touched me. But this isn’t about me. It never has been.

At first, it was just about helping Gabe, but it’s moved so far beyond that now.

It’s about the families who, even though they don’t always have the energy to walk through grocery aisles with their child or have any idea how their child will act at a birthday party, want the best for their kids.

Really, we’re no different than any other parent. Our children have been diagnosed on the autism spectrum.

We love them, even when they want to beat their heads against the wall.
We love them, even when they’re night owls who never go to sleep.
We love them, even when their siblings say, “I don’t know how to play with my brother.”
We love them, and we will never stop.

 


 

As told to Ivy Farguheson by Belinda Hughes.

Ivy is the social services reporter for The Star Press. She has lived in the Muncie community for more than five years and has been amazed at the commitment by residents like Belinda who do what they can to improve lives for everyone.

Belinda is the founder of Interlock East Central Indiana.  If you were moved by her story, you can contact her at belinda@behavioraba.org.