Autism Spectrum Disorder: One Mom's Perspective
Allow me to introduce Tina Hunter. Tina is a registered nurse, the mother of two boys, has one daughter-in-law, and is awaiting the arrival of her first grandbaby in a few short months! Tina sounds like a lot of women I know. She's got a family, a job, and life is moving right along. Her youngest son, Jonah, is a wonderful young man we serve through programs at JCDC. I had the privilege of working closely with Jonah for an online fundraiser auction last October. That experience is on Facebook for anyone's viewing pleasure as a video on the JCDC Facebook page: www.facebook.com/jcdcwv. Below, I have listed the question I asked Tina in purple, then, in color, my brief "topic" descriptor (note, NOT hers) for those of us reading, and her quoted answer. I don't want any confusion about the descriptors. I put those there, not her. She isn't being blunt, that's all me.
What do you want people to know about Autism (in general)?
Autism Changes Your Life.
"It is extremely life altering for parents and siblings of the child. In our case, there was no warning. We were blessed with a baby whose first year of life seemed “typical”. Changes started happening subtly at first. At fifteen (15) months speech development seemed to slow down. By eighteen (18) months speech development plateaued. By twenty-two (22) months there was no speech at all. Only moans, grunts, teeth grinding, occasional crying (rare) and no eye contact. The baby that had been so funny, that loved to play peek-a-boo and say “Mickey” every time he saw that Disney Mouse no longer had a personality. He didn’t want to be held. He stopped eating (and I thought I’d finally had a non-picky eater to be in my home with me J). He could no longer tell me what he wanted at all. Potty training was the least of our worries at that point. He stripped off his clothes every time he could. It was like someone had come into our home and taken my sweet little boy and my son’s baby brother."
There are many emotions involved: Guilt, Anger, Frustration, Grief...
"The guilt of having another child plus trying with all you have to “figure out” the “shell of a child” that you now have is overwhelming. As a nurse, I just wanted to “fix him”. I felt guilty because I couldn’t “make him better”. All the joys of having a sibling seemed to be taken away from my oldest child. Things were just “not fair”. The anger, frustration and grief came in waves. Friends and Family didn’t know what to say or do."
Autism Spectrum Disorder is a SPECTRUM disorder.
"People used to ask “what special things can he do?” “Can he remember numbers and dates like Rainman?” “Can he play the piano or any other instrument really well?” Those questions were frustrating. Especially when all I wanted was to have him be able to tell me what he wanted or needed…..to look at me, follow one step directions and to stop grinding his teeth.
After the shock, grief,and anger pass you slowly begin to appreciate the smallest progress; like, the first time he brought me a picture of a cup to let me know he was thirsty, or when he handed me the picture of McDonald's to let me know that’s where he wanted to eat. Those were milestones!! New personality traits began to develop and it was so refreshing to see that he wasn’t “just a shell”. He wasn’t what I initially thought he would be, but he was very special. He was being recognized for all of his sweet, funny and quirky actions and no longer for what he couldn’t do. I didn’t even want to hear what he “couldn’t do” anymore. I was tired of that! I only wanted to focus on what he could do."
What is something people say about individuals with disabilities or do concerning people with disabilities that you wish they wouldn’t?
How 'bout we learn to use some manners? Sometimes, kids could teach us adults a thing or two and adults should always be teaching kids to respect others, at least by example.
"I wish people would ask questions instead of whisper to their friends or roll their eyes as if to say “if that was my child I’d……..” I actually appreciate the innocence of children more so than adults. I would much rather have the child look at me and say “what’s wrong with him?” “Why is he screaming?” I also wish some parents would spend more time talking to their children about how all people are unique. I will never forget hearing other boys referring to my son as “the freak”. I also will never forget the adults who “shushed” my son in a movie theater full of small children because he was making noises that were different than the other boys and girls there. I also will never forget the kindness that so many have shown. The ones who saw that my son was having a meltdown but took time to offer comforting words. The ones who said “Mom, don’t worry about him. He isn’t bothering us”.
Friends are Important.
"The friends who knew how hard it was for me to take him places so they would come visit me. I would ask that people try to understand parents of children with special needs. We still need a break. We still enjoy doing things with adults but we can’t. Go see them! Pick up the phone and call them! Understand why they talk so much that you can’t get a word in. Remember, they haven’t had real conversations for who knows how long. Know that they love their child as much as you love yours. It’s definitely an emotional roller coaster ride but every step toward progress is so worth it all. I’d also tell them to appreciate the small things because they truly are the most important."
What services have helped you the most and would recommend to other parents?
Special Education and Other resources can help a lot.
"The Jackson County Special Education program, WV Medicaid Waiver and JCDC Services have been lifesavers. Without the wonderful people that have been there for Jonah and myself, I don’t know where I’d be today. I thank God every day for blessing us with people who give so much of themselves to make a difference for families like ours."
If you have a loved one on the Autism Spectrum, you are not alone.
"Unless you live it, you don’t know it. I have met so many wonderful people who “know it” and without them we would not be where we are today."
Thank you Tina for taking time to answer my questions! I really can't begin to tell you how much I appreciate the help to share your perspective with others.