BY PEG GRAFWALLNER
I want to introduce you to my daughter, Ani. Ani is a vivacious, warm-spirited young woman. She is also autistic and intellectually disabled.
Before we go on, I want to define autism. According to the National Autism Center, “Autism spectrum disorder (ASD) is a neurodevelopmental disorder characterized by deficits in social interactions and social communication and by restricted, repetitive patterns of behavior.”
If you ask Ani what autism is, she’ll tell you she gets confused. This is where I pause to let that sink in. I brought Ani home from a Bulgarian orphanage when she was five years, 11 months. She weighed 23 pounds. Her body had a soft, down-like “fur.” Apparently, the body tries to keep itself warm when it’s starving.
This is where I pause again. She had never learned to chew. I didn’t even know you had to teach a child to chew. Well, you do. She had never learned to sip. She didn’t know how to use a straw. I didn’t know you had to teach a child how to suck through a sippy cup or a straw. But, you do.
She had never taken a bath or had her hair washed. She had never brushed her teeth. Her gums were actually growing over her baby teeth.
I’ll pause again. She had never been comforted, rocked or held. Instead, she learned to soothe and comfort herself. She didn’t know Bulgarian, but “spoke” infantile babble because no one had bothered to talk to her.
I’ll stop pausing here only because if I think too long and hard about it, it’s difficult for me to keep going. So, what does help look like and what does support look like when we are talking about my Ani?
It looks like it does for any other kid. Let me explain. First, don’t feel sorry for her. She’ll never need your sympathy and she’ll never need your help. She’ll need your support.
Second, there’s your way and Ani’s way. It will probably never look the same, and that has to be okay.
Finally, expect she will. Expect no less of her.
As parents, we want to help our children. We immediately fly into the “I don’t want to see you suffer, so I will gladly do this for you” (because sometimes that’s what “help” looks like) mode every time they give us their expression of calamity or if we perceive that things become too “hard.” Heaven forbid life gets tough.
I’ll give you an example of support . . . not help. When Ani was about eight years old (and had learned how to chew) she wanted a hot dog for lunch. I gave her the standard package of hot dogs – eight in a package, neatly wound by the brand label. One needed to open the top of the package to remove a single hot dog or several hot dogs. One could open the package at the top by using brute force and pulling or one could use a scissors and cut the top of the package. Of course, I could have opened the package of hot dogs for her, but that wouldn’t have taught her how to open them herself. She held the package in her hand and stared at it awhile, waiting for me to make my next move.
I said, “You try to open the package first. If you get stuck, I’ll help.” Truthfully, I had no intention of helping. She had to learn to do it herself so that the next time it would be that much easier.
Forty-five minutes later, after the tears, the screaming, and the mind-numbing frustration, Ani opened the hot dogs. She took a pair of scissors and cut lengthwise, right through the middle of the package. The hot dogs came tumbling out of the package onto the counter; eight hot dogs and the juice all over the place.
We screamed for joy! Ani opened the hot dogs! I grabbed her by her itty bitty arms and nearly hugged the life out of her. She was so happy; I was so happy we fell into a heap on the kitchen floor. She had done it! She had hot dogs for lunch!
Ani’s way will always win over anyone else’s. My son played high school football, quarterback position. He came home from school one Friday afternoon to grab his gear and realized he hadn’t made peanut butter and jelly sandwiches to eat after the game (the snack of athletes everywhere!). Ani was about ten or so. He asked her to make two peanut butterand jelly sandwiches for him.
After the game and on the bus ride back to school, Max opened his brown paper bag to eat his snack. He took out one sandwich, opened it and took a huge bite. It was a peanut butter sandwich. No jelly, just peanut butter. He took the next sandwich out of the bag. He opened up the two slices of bread. Sure enough. Just jelly. Ani had indeed made two peanut butter and jelly sandwiches, just as she was told. Max’s friend saw his dilemma and started laughing. This experience ended up in my son’s senior high school yearbook. His friend couldn’t help but fondly recall the time Max’s sister made peanut butter AND jelly sandwiches as one of his favorite high school memories.
Finally, and most important of all, have high expectations for any child – including mine. At the beginning of third grade, Ani had learned to tie her shoes. We had worked with her for a long time, taking it slow, until one day, the “bunny ears” went through the correct loops and all was right with the world. A pretty big deal for a kid who never saw shoelaces until she came to America. The first semester of third grade came and went. I picked up Ani after school the first day that students returned from winter break. Change was difficult and I wanted to make sure she had assimilated into the routine of school again. Her teacher took me aside and thanked me for teaching Ani how to tie her shoes over winter break. “I’m sorry. What did you say?,” I asked. “We, the students and I, are just so appreciative that Ani has learned to tie her shoes. While all of us loved to help her and every day we’d show her how to do it, it’s just much easier for all of us that she knows how.”
Apparently, Ani would go up to her teacher or some unsuspecting classmate, stick her itty bitty foot out with untied laces and look forlorn (another way to ask for help!). The naive innocent would stop what he/she was doing; bend over and tie Ani’s shoes. Ani, I’m sure, would skip away with a smirk of, “Ha! Did it again!”
I must admit, when the teacher told me what Ani had done, I almost burst my buttons with pride. My daughter, the one who didn’t know her ABCs like the other kids did; who couldn’t count to 50 like the other kids could; who couldn’t cut a straight line with a pair of scissors like the other kids could… yep, my daughter had bulldozed them all!
“Actually, Ani learned to tie her shoes nearly six months ago. You have been played by a nine year old. Isn’t that something?” I turned on my heel and walked away, feeling enormously satisfied.
So what does this tell us? While my daughter is unusual, uncommon, uncertain, and a variety of other “uns,” she can learn, and has learned.
Support her as you would support any other child. Don’t do it for her and don’t feel sorry for her. She might surprise you.
Ani’s way works for her. It might take time and you might do it differently. In the immortal words of Sir Paul, “Let it be.”
Last, we have been very fortunate; blessed really, to have had an enormous amount of support in guiding our daughter. Ani graduated with her class this summer. She is currently volunteering at our neighborhood Park and Rec Department and this fall she will intern at the local pediatric hospital.
Ani is an inspirational, intelligent and involved young woman who has become a local “celebrity.” There has been a regional magazine article about her. She does cooking demonstrations for a disability resource organization. She is a star athlete involved with Special Olympics and is one of the Wisconsin Ambassadors for Best Buddies. Her warm personality and honest disposition are genuine and true. She is no longer the “little orphan” that I brought home from Bulgaria 14 years ago; on the contrary, she is a mover and shaker who continues to surprise us and those around her on a daily basis.
Next time you’re in our neck of the woods, stop by for hot dogs and peanut butter and jelly sandwiches – you’ll be glad you did!
National Autism Center website. Retrieved on June 23, 2015 http://www.nationalautismcenter.org/
ABOUT THE AUTHOR:
Peg Grafwallner says, “I often tell families and educators that I look at life through three lens: one of parent, one of educator and one of special needs advocate. My husband, Mike, and I consider ourselves to be full-time educators on Ani’s behalf and network tirelessly for her and other special needs families. We are fortunate and blessed to have considerate family and organizations to support our journey!”