Impact Feature Issue on Consumer-Controlled Budgets and Persons with Disabilities
Fighting for Richard: A Mother’s Story
I am Bonnie Jean Smith, a mother of four children, and I’m here to share with you my experience of living with autism and participating in the Consumer-Directed Community Supports (CDCS) program, a service alternative available in our home state of Minnesota through the Home and Community-Based Services waiver and Hennepin County, where we live.
I have three sons: Donny, 15; Richard, who is 13; and Ryan, aged 9. Two of my sons are on the autistic spectrum and were affected by lead paint dust exposure as infants. My daughter, Danielle, is 18 and, although still connected with our daily family life, she is no longer living at home. Being raised by both parents, I did not set out to be a single parent. When my partner got stuck in a mid-life crisis, it became clear that I needed to take on the challenge of parenting alone.
The whole country learned about autism through the movie Rain Man. Dustin Hoffman’s character had obvious difficulty in getting along with people, but he was brilliant in the memorization of numbers and lists, and in calculating dates. This was an introduction to autism for many people, but there is so much more to be known about people with this disability. I would like you to get to know Richard, one of my sons with autism, who is a participant in the CDCS program offered through Hennepin County.
About eight years ago, I decided to start a fight for Richard so that he would be more than a professional’s label. As a loving mom, I knew him well from watching him closely. I had observed too much about his potential to accept that he should become neatly defined as an “Emotional Behavior Disorder Student.” Richard is complex, and in that complexity are the following characteristics related to autism:
- Richard needs to have life ordered and predictable.
- Richard’s circle of trusted friends is very small.
- Richard’s high anxiety reaction to the disorderliness of life is to run – to quietly turn and leave.
- Richard learns differently than many others – he is a visual learner.
- Richard, like some other autistic people, has one “genius level” talent that is almost beyond comprehension.
- Richard cannot handle over-stimulation, such as loud sounds or excessive lights for long periods of time.
Need for Order and Predictability
Autism means that Richard needs to have life ordered and predictable. Daycare was a good environment for Richard as a young child because it was orderly with clear transitions; there were no surprises – snack, naptime, playtime are very scheduled. His orderliness extended to consistency and fairness in how people were treated; when toys were not shared, Richard spoke up for fairness and everyone taking their turn. Orderliness was important to him. As you might expect, the school environment he entered as he got older was less orderly and predictable. It included the unexpected teacher, new books that didn’t come when promised, schedule changes because of emergencies. This lack of orderliness reached a breaking point for Richard in first grade. Since then, I’ve tried to find and use all the resources available to us to advocate for his needs. As one resource, the CDCS program has helped lend order and predictability to his environment in a number of ways. For example, routine is important to Richard and part of his routine is that he likes to go outside alone early in the morning; so through CDCS we were able to get a six-foot high fence put around our yard, which enables him to be outside every morning by himself and stay safely at home. Predictability in his relationship with his sister is also important; after she grew up and left home, we still needed to maintain her room in the house because Richard insisted that Danielle had not left home and the presence of her room helped meet the need for her predictable presence. The way that the CDCS program has helped Richard stay connected to his sister is by making it possible for Danielle to work as the personal care attendant for Richard; so even though she doesn’t live with us, she is still a regular part of his life.
A Small Circle of Friends
Autism means that Richard’s circle of trusted friends is very small. He trusts me, his brothers, his sister, and Aunt Bernadette. Beyond that the circle is small. When he doesn’t trust someone he might show this by never learning that person’s name or letting him or her sit alongside him – he will stand or have the other person stand. When Richard lets me know why he does not trust that person, often it is because he has noticed some unfair behaviors on their part.
The CDCS program makes it possible to hire and retain good people who Richard trusts to guide him and help him be his best. In addition to hiring his sister as his personal care attendant, his neighborhood “auntie” has been hired for respite care. It works out perfectly and I know these trusting relationships have been the reason for Richard’s sense of comfort and success in many areas.
The high anxiety reaction Richard has to the disorderliness of life is to run. He just quietly turns and leaves. I call him my “runner.” In fourth grade, in response to not feeling safe, he walked 20 blocks away from school. A kind, elderly couple tried to help when he was “stuck” in their front sidewalk. When they approached him he held up his hand and said, “Stop, you are a stranger and I am lost.” He reached us on their cell phone and when we arrived he was being served cookies and milk from a safe distance. After this experience, the school and I trained Richard to find a safe way home.
To help Richard relax and manage anxiety, a trampoline and massage pad were purchased through the CDCS program. We also have a bicycle with flat tires to give him some exercise but to keep his speed down so I can keep up with him. To keep him safe and lessen my anxiety, high locks on the door and windows, an alarm system, and the six-foot-high fence were installed.
Autism means that Richard learns differently than many others. He is a visual learner, which means that he communicates and learns through pictures. For example, to help him understand the value of washing his hands we got on the Internet to see pictures of germs and what happens when you wash your hands. Now he understands why. The CDCS program made it possible to purchase a computer, digital camera and bookbinder that enable Richard to find pictures on the Internet, take photos himself, and make his own storybooks that help him learn. We have built a reference library from his work. We have also made books to help him communicate. The pictures he took of the neighbors along with his interviews were turned into a book. One book, “Richard Saved the Flower,” came about when he realized that flowers would die with the cold weather. When Richard’s successful pumpkin seeds took over our garden the story, “Richard’s Pumpkin Patch” was told.
The FAST FORWARD program, software resulting from 25 years of brain research, was purchased through the CDCS program. What on the surface appears to be a video game is actually a learning assessment tool. I start the game with a sign-in and then let Richard play to his heart’s content. Afterwards, I will put in the password and get a printout assessment of his learning, which I hand over to Richard’s teacher. The software identifies the “holes in his learning.” Over a three- or four-month period Richard’s reading skills improved two to three grades. It was an invaluable tool for the teacher to help Richard succeed.
As in Rain Man, some autistic people have one “genius level” talent that is almost beyond comprehension. Richard excels beyond belief in choreography, music, and art. He is enrolled in the American Variety Theater Company through the CDCS program. They have provided special lessons, tap shoes, and shiny, satin performance clothes. When he is on stage, he shines. The first time I saw him he performed with confidence and stunned us all, especially me. Richard earned the Sammy Davis, Jr. Tap Dancing Award. “I’m really good! I’m really good!” he said. In that setting he is treated as any other child, placed in leadership roles, and expected to succeed in the competitions.
Sensitivity to Over-Stimulation
Autism means that Richard cannot handle over-stimulation, such as loud sounds or excessive lights for long periods of time. In the American Variety Theater talent contest, Richard and his brothers won N’SYNC concert tickets. He knew he could not hold it together for the length of the concert – he mentioned to me the loud noise, the screaming girls, that he would have to leave and make his brothers and sister leave with him. He decided that it would be better to give his ticket to his sister’s friend. Instead, Richard and I spent the evening together while he skateboarded in the community. When I heard him show this self-awareness I said to myself, “Hey, there is growth – like a light bulb!’”
Breathing Room for Mom
My Richard is a Pandora’s Box for me. I never know what challenge is coming next. Prior to the CDCS program, I went sleepless and became depressed due to the constant monitoring that he needed. Richard was a “wind up toy.” Without medication he could function on one hour of sleep a day. With the breathing room given to me by personal care attendants and these common sense tools I have been talking about, I now can see that he is a visionary and a pioneer that has led me into a new universe. He sees, feels, and senses things that many of us easily ignore or discard. He has taught me the difference between real needs and perceived needs. My goal is to continually explore the ways in which he will gain self-confidence, learn more daily life skills, and feel appreciated for just being Richard.
I am continuing on my quest to help others see what I see in Richard. I want others to see an incredible person with talent and strengths and sensitivities. My challenge is to continue to guide this young man with values and a sense of what is right and wrong. I know his skills and talents will definitely make a positive contribution to our community.