What is Capable Support for My Child with Disabilties? by Peg Grafwallner
Updated: Feb 15, 2020
I am an Instructional Coach and Reading Specialist at a large urban high school.
I am also Ani’s mom.
Ani is autistic and intellectually disabled. 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.
I brought Ani home from a Bulgarian orphanage when she was five years, 11 months. Her mind and body suffered greatly. She weighed 23 lbs., had no language, was not potty trained, and focused on bizarre hand movements. It was clear she had had no mental or physical stimulation. When I met her for the first time, she sat under a shelf and rocked back and forth – endlessly.
But the one thing that kept going, that never diminished was her spirit. Through all of the heart-wrenching sorrow within the first several years of her life, she has kept her indomitable spirit.
As a parent of a Special Needs child and as a teacher in a large urban school district, I have a unique perspective. I see many parents who “help” their children and as a result, they do their children a great disservice. They 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 smell calamity or perceive that things have become too “hard.” Heaven forbid life gets tough.
Instead of helping, let’s focus on support. There is a difference.
What does help look like and what does support look like when we are talking about my Ani or perhaps, other special education students?
It looks like it does for any other kid.
First, don’t feel sorry for Ani. She’ll never need your sympathy and she’ll never need your help. She’ll need your support. As an example, at home, we could give Ani the space and time to practice a skill. At school, however, Ani was the only student that required assistance and time was of the essence so there might not have been the luxury of practice. Therefore, I would ask Ani’s teachers what specific skill they were working on at school that we could practice at home. Sometimes, Ani would practice using a scissors cutting along thick, black lines; sometimes she would trace shapes to practice holding a pencil. Whatever it was, it had to be simplistic and basic – something that wouldn’t cause anxiety or a loss of patience for mother or daughter.
Second, there’s your way and Ani’s way. It will probably never look the same, and that has to be okay. When Ani was about 10 years old, Max, her brother, asked her to make two peanut butter and jelly sandwiches for him to eat after the football game. As he sat on the bus, eager to eat his snack, he opened the bag and took out one of the sandwiches. He took a big bite and stopped. Peanut butter, no jelly. Ani had made a peanut butter sandwich. He took out the other one and opened the two slices of bread. Sure enough, jelly. Ani had indeed made two peanut butter AND jelly sandwiches, her way. To this day, that incident remains one of his favorite high school memories. His friends noticed what happened and laughed good-naturedly.
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. However, I neglected to tell her teacher. One day, I picked her up from school and her teacher thanked me for teaching Ani how to tie her shoes.
Apparently, Ani would go up to her teacher or some unsuspecting classmate, stick her foot out with untied laces and look forlorn (another way to ask for help!). The naive innocent would bend over and tie Ani’s shoes. When the teacher told me what Ani had done, I almost burst my buttons with pride. My daughter, the one who couldn’t cut a straight line with a pair of scissors, who couldn’t trace the shapes on the paper, who couldn’t regulate her finger movements had manipulated them all. Instead of the teacher and her classmates supporting her, they helped her and she took full advantage of it.
So what does this tell us? 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. But, that has to be okay. Finally, remember even though she might be labeled “special needs,” she is as special as any other child – with all the manipulative behavior that all of us own.
Ani is an inspirational, intelligent and involved young woman. She is a star athlete immersed with Special Olympics and is one of the Wisconsin Ambassadors for Best Buddies. Today, she is a lab technician at our local pediatric hospital. Her warm personality and honest disposition are genuine and true. She is no longer the “little orphan” that I brought home from Bulgaria 16 years ago; on the contrary, she is a mover and shaker who continues to surprise us and those around her on a daily basis.
I remember many years ago bemoaning Ani’s future. How would it look? What would she do? Who could I count on? Ani’s art teacher, a special needs parent herself, encouraged me to take one day at a time and that when the time came, I could rely on the “natural support” within the community. She was right. The natural support has revealed itself at Ani’s work, in Ani’s social life, and in Ani’s hobbies. And the expectations remain high.
Peg Grafwallner, M.Ed., is an Instructional Coach/Reading Specialist at a large urban school in Milwaukee, WI. As an English teacher, at-risk educator and reading specialist, Peg has taught advanced English and developing readers. Currently, Peg models, coaches and assists teachers in creating comprehensive literacy lessons meant to enhance skill-building; in addition to providing instructional support to teachers district-wide. Peg is a blogger, author, and national presenter with articles appearing in ASCD, Edutopia, Exceptional Parent, Literacy Daily, Literacy and NCTE and the WSRA Journal. Peg can be reached at email@example.com or at https://peggrafwallner.com.