American Action Fund for Blind Children and Adults
Future Reflections Special Issue: The Individualized Education Plan (IEP) TRANSITION
by Lydia Schuck
From the Editor: Lydia Schuck works as a curriculum designer for Hadley Institute for the Blind and Visually Impaired. This job allows her to split the family duties with her husband, who is homeschooling their youngest daughter through high school. The mother of a twenty-four-year-old blind daughter, Anna, Lydia is active in her local NFB chapter in Lansing, Michigan, and in the Michigan NFB affiliate. This is the fifth and final article in a series on transition that Lydia has written for Future Reflections.
Several years ago the National Federation of the Blind used to say that with proper training and equal opportunity, the average blind person can achieve the same things accomplished by sighted people. As an NFB member I heard and believed that statement, yet I did not believe it for my own blind child. I knew she would never achieve the kind of success the NFB talked about.
To begin with, Anna was born fifteen weeks early. In the hours just before she was born, the doctors asked me and my husband, Nathan, whether we wanted them to resuscitate our child at birth; they knew she would not breathe on her own. They listed the big potential problems in this order: blindness, cerebral palsy, and autism. Then they said, "Sign here." One of us signed—I don't recall which. Eventually our daughter was diagnosed with blindness and autism and cerebral palsy.
We signed that paper, saying that the doctors should do what they could to save our child's life. How many people have ever signed such a document? On my worst days, the days when I just don't think I can manage Anna's multiple issues, I ask myself, "What if I had never signed that paper?" Anna's sensory hypersensitivities, caused by her autism, result in extreme anxiety, and her behavior can be offensive when she is anxious. Once in a while, on her worst days, Anna tells me she wishes we hadn't signed that paper.
Today Anna is coming into a life of her own, a life that fits the NFB’s new statement, "You can live the life you want; blindness is not what holds you back." Her biggest issues are more related to her autism than to her blindness, as she is quite adept with Braille and blindness technology. She has started her own small business—but more on that later.
During a pregnancy you have a lot of expectations. Maybe that's why they say you are "expecting." You expect everything to be normal, and you compare every measurement to what is expected.
A trusted friend told me, "Don't ever compare your child to another child." But you have to compare to know if your child is "normal." Isn't it a comparison when doctors tell you whether your baby is low or high on the growth charts, on time or a little delayed in development? All parents want their children at least to be around the middle of the developmental schedules.
I tried not to compare my child with full-term babies, and I adjusted for her early birth. Every time I heard about the chance of disabilities, I said to myself, "Of course, my child will beat the odds. She will be the superstar." Other parents of preemies have told me they thought in the same way.
Anna was a smart little girl, and after a while she became quite talkative. She learned Braille and used her cane. Her legs were a little stiff from the CP, but they were quite functional. She was not willing to eat much, but she had a feeding tube and was developing pretty much as expected.
As a toddler Anna ran around the house pushing her toy shopping cart, learning her way around by slamming into the furniture. She talked and laughed and danced! I felt we had dodged the bullet. Everything would be fine. We were all having fun together—Anna and her sisters, their dad, and me.
As Anna got a little older though, we noticed repetitive behaviors and fantastical stories. The stories were related to specific pieces of music. Anna's voice sounded the same in every story. She spoke in a soothing, soft British accent. The stories were all about who was there, and who else, and who came next, and finally, who else would be coming. There was no plot line. Anna's sisters and their friends could not join in because the storytelling was done in such a formulaic manner.
Anna also developed some behaviors that disrupted the household. She would try on every pair of pants until she found one that "felt right" that day. Then she would try on every pair of socks and every shirt. She would sort through a bowl of odds and ends for hours at a time.
When Anna was seven we stopped using the feeding tube because she had started to eat a few more foods. I still wondered why a child would not eat, not realizing that it was due to autism-related hypersensitivity to textures and smells. At the camp for blind kids, Anna gagged over and over if she smelled Cheerios. One year the camp director didn't buy Cheerios at all, knowing that Anna would be at camp for several weeks.
Anna became angry and frustrated whenever she heard someone hammering in the neighborhood. She was sure the hammering would be followed by the hated sound of an electric saw. Every winter we thought she was making great improvements, only to discover that she was still hypersensitive to sounds in the spring when lawnmower season began.
Finally we sought help from a doctor in Ann Arbor, Michigan, who specialized in developmental behavioral pediatrics. Dr. Richard Solomon knew how to connect with kids, including kids who could not see him. He adopted Anna's British accent as soon as she said a few words to him. After watching her repetitive play with a "city in a box," he wrote that it was his "firm opinion that Anna has Asperger syndrome." Asperger syndrome sounds easier to live with than full-blown autism, but really it is just a different form of the same disability.
At the point when we received this lifelong diagnosis, we had to adjust our expectations. We accepted the reality that Anna wasn't being naughty or trying to cause problems in public. Her behaviors were what you might do yourself if you lived inside her body, with its hypersensitivities to sound, textures, tastes, and smells. She couldn't look around and run back to the car or dash into a store to escape something she found intolerable. She was terrified much of the time, and with good reason. We'd been hoping she would grow out of most of her difficult behaviors, but now we knew they probably would not change. At any rate, the cause of the behavior was not going away.
We had a new normal, different from anything we had hoped for. It was different from the "normal" of our other children, and it was different from anything our family and friends thought was ideal. Yet Anna's diagnosis brought us peace. It was all just autism. Autism explained why she wouldn't try new foods, no matter how hungry she was. Now we understood the obsessive storytelling and the odd collections of precious items she called "ranch supplies." It was just autism. We didn't automatically become patient, but at least things made sense. It wasn't easy, in combination with blindness and mild cerebral palsy, but it was just autism.
We reset our expectations, and finally we saw Anna begin to live the life she really wanted. She would never meet the expectations we had for her sisters, but she could reach her own, and we adjusted ours to those standards.
When I see an announcement on Facebook or in a Christmas card about another child or young adult being wonderful, it still stings. I read about my friends' children, some of whom are blind or have other disabilities. Most of them are just ordinary kids, but some of them are actually doing great things. I want to congratulate them and to be happy for them.
Even among friends who have children with disabilities, it can be hard to celebrate. Over and over I hear about a blind young adult who seems to win everything. Sometimes my child is lucky to get through the grocery store without slugging someone or swearing at a mom with a crying baby.
I've come to realize that I've had to lower my expectations, and that it's okay for me to feel a bit jealous about other kids who are reaching typical milestones. I love my kids like crazy, but I am a little wistful for the empty nest years I probably won't get to experience. Although Anna is her own guardian, she doesn't completely understand all the logic of adult decisions. She'll always need some help, and we have found ways to help her keep progressing.
I have listened to what Anna wants as a young adult. She wants friends. When she was sixteen we started a girls' social club, edentransition.org. We reserved a meeting room at the local library once a month and advertised there, on Facebook, and through associations related to autism. Over the past eight years, minus two when I was working out of town, we have met girls from twelve other families. It takes patience, but if your child is not working or in school, this kind of group can be an effective way for her to develop some friendships.
Each time we meet, we make sure that everyone knows all the others. Usually only three or four young women are in attendance. We start with a short social skills activity. Then the participants are free to talk together. Some bring their own crafts, drawing notebooks, or other items. Usually I prepare some kind of craft activity. For instance, we got some grant money from the Michigan Braille Transcribers' Fund and used it to buy colorful craft clay and also some Braille beads from the American Printing House for the Blind (APH). We plan to demolish some electronics next month, and we'll save the pieces to make sculptures another time. We meet every month and almost never cancel, even if no one comes. We just send out an announcement and meet again the next month.
Anna's extreme anxiety about the sounds she hears in public prevents her from working in a regular job. She gets SSI as her main source of income. However, one of her longtime interests has led to a real business opportunity. For years she has collected plastic animals and fairy figures, made by companies such as Safari Limited and Schleich. She keeps a standing list of figures she wants to add to her collection, and she started talking to the sales representatives from both companies. She found out that if she ordered merchandise worth one hundred dollars from Safari Limited, she could buy at a wholesale price. Schleich would only deal with owners of brick-and-mortar stores, so they were out. Buying merchandise in large quantities, Anna sells to NFB friends, doctors, family friends, and teachers who want animal models for their students.
Anna has just now reached the point where she sells enough figures to pay herself fifty dollars a month and still keep a few hundred dollars for future purchases and technology repairs. I handle all of the business paperwork, but Anna keeps a record of completed sales so she can pay sales tax to the state once a year.
Anna has a unique strength, perhaps related to her lack of social skills due to her autism. When she calls people, she is not offended if they do not want to buy anything right then. She can be quite charming, especially to people outside the family. Better that than the other way around!
One of the biggest problems for us has been having a very emotionally volatile person living in the household. As Anna reached adulthood, we were able to buy the house across the street from us. Anna has lived alone there for five years. She comes over to use our microwave, and, I suspect, to seek company; after all, she has a microwave of her own. At her house she can listen to music, play the piano, make phone calls, and take naps without interfering with anyone else. Many problems have been alleviated by having just a little more space!
Anna began to put in her own eyedrops when she was in high school. Slowly she developed ways to identify her medication bottles. She is capable of calling in her own prescriptions and picking them up when we take her to town. We expect her to get from the library to the pharmacy in our small downtown area. We intervene if there is a problem with a prescription, but she handles almost all of it herself. She takes a taxi to go to the doctor, and she has even sold some of her products to the cab drivers!
As we think about retirement outside of the area we live in, we've explored the future with Anna. She wants to continue her business, and we know she can manage quite a few of her daily tasks. We are looking to buy a small house that she can rent from us. It will be walking distance from the town square, where almost all of the essentials are within a few blocks.
Not too many years ago the NFB adopted a new slogan: "You can live the life you want; blindness is not what holds you back." This is really true for Anna. With my adjusted expectations, I can help her live the life she wants. There's no sense in trying to make her meet the expectations of a "normal" person, a person without autism. Her blindness really does not hold her back, but autism does. Yet for Anna, meeting her own goals is very satisfying. When I adjust my expectations—that is, when I accept that the life Anna wants is the best life for her—I feel at peace.
Our family's faith is Christian. We value every life, and when a life is measured by reasonable expectations it's easy to see that value. We don't all need to be rich and famous. (Actually no one is rich and famous in our family!) We do need to have faith in achieving the highest goals we can. When those goals include living the lives we want, we will be able to fulfill our own expectations, and we will be able to help our children do the same.