Do Overs

by Anonymous

One of my greatest challenges during the adoption process was to decline a special needs child.  Since that time, I have come to learn that all children have special needs - some more challenging than others.   So it was, Mother's Day 1998 I met our 6 month old son, Sam.   When Sam was three, we took to the library.  Surely with Dobson's The Strong Willed Child, Ross Greene's The Explosive Child, Fay and Peterson's Parenting with Love and Logic, and Rosemond's Parent Power in our arsenal, we could turn these behaviors around.  Elementary school brought additional challenges for the child who appeared normal, but whose behaviors were clearly different.  Without a diagnosis, and inexperienced educators, Sam was misunderstood and disadvantaged.  

With professional counsel and support of family and friends, he survived middle school.  With a complex diagnosis and IEP in place, middle school was no less than HORRIFIC.  The child who wanted to be part of school no matter what, was defeated - emotionally, socially, and academically.  Administrators, teachers, counselors, and peers knew not what to do with Sam's behaviors.  In came the Director of Special Education with a vision - the need for an Autism Specialist at the high school level - great idea, but a challenge for the child who wants to disassociate with his diagnosis.  Sam, however, is learning to be an advocate for autism.  He is thriving socially, emotionally, and academically.  In addition to traditional history and science classes, he has progressed from computer based learning to a traditional English class.  He has developed interests outside of school - weekly, volunteer work for a local mission, violin lessons, Young Life, and youth group.   Best of all, he has formed a long sought friendship.  Developing friendships has been one of Sam's greatest challenges and yet his greatest desire.   

The journey has been tough. We have learned a lot - grace, tolerance, and not the least being humility - the mom having lunch with her son who curses and walks away because the menu does not suit - the dad who receives the call from school to come and pick up his son because he has cursed and threatened his teacher - the child with D's and F's on his report cards.  We are forever grateful for mercy and the many opportunities for do overs - opportunities to make it better and build hope.

"iPod is disabled. Try again in 22,718,572 minutes."

 by Susan Oscilowski

Color me clueless when it comes to technology, so if this message appeared on my device, I'd shriek and then calmly hand it over to one of my sons.  As my personal tech-support team, Robert and John Paul know what to do, just as I know which articles of clothing should never go in a washer or dryer.  I have learned to delegate any task involving gadgets, knowing that I'd sooner put defective items into electronic recycling than even consider repairing them.

But the ominous-sounding warning struck my friend Anne's device, and we laughed about the message as we both took a rare afternoon together for coffee.  When I mentioned it to Robert, he explained something I couldn't repeat here if I tried-and John Paul chimed in, attempting to translate the solution into a language he thought I might understand...at 15, he's still too naïve to know it's hopeless to expect I'll ever get it. But I think they were confident the iPod could be reset electronically-I was able to comprehend at least that much.

Anne's teen son Billy, wanting to use his younger brother's iPod, apparently entered every mathematical algorithm he knows to find the password to allow him access. It's in their genes to unlock hidden code, and our sons share a similar knack for knowing how to operate machinery equipped with a motherboard, chip, or other magical widget. Tommy thought his cleverness would prevent Billy from using his iPod, but although Billy didn't get in, he made it nearly impossible for either of them to be able to use it.

Just how long will it take before Anne's boys will be able to try to get back in? Using an app that converts minutes to years, she discovered that 22.7 million minutes is about 43 years. The brothers will be in their 50's, and the device would have been obsolete for nearly 42 years, based on my observations. Anne will be quite elderly by then, and if I'm alive, I'll be approaching the century mark.

My intention for this article was to share some advice, hope, ideas, or stories with others who like Anne and me, are blessed to raise children on the autism spectrum. The topic wasn't supposed to be about devices, but there's a reason I am redirecting my thoughts into that realm. As a student in a Communication Mentor course, one of my assignments was to assist individuals with verbal challenges--- and their parents or supporters---in experimenting with a variety of devices designed to overcome deficits in spoken language. I brought an iPad to Billy, and because of his amazing capacity to operate computers, it was a near-perfect fit. (They just had to figure how to lock him out of Angry Birds.)

Youth Advocate Programs' philosophy of presuming intellect applies here: even though we can't understand what Billy tries to communicate to us on a daily basis, he is always trying. For more than a year, he has been using Proloquo on his iPad, and has made great advances in speech and expressive language. Three of my sons have a diagnosis of ASD, and like Billy and Tommy, they have genius oozing out of their pores. Although my boys have not had impairment in expressive language, it's easy to see why outsiders might not view them as intellectually gifted. And artistically gifted. If I didn't have a space limit on my writing, I'd happily go into more details about them.

We are living in an age unlike any other because we have tools at our disposal to break silences and dispel stereotypes which have left so many people with harmful and downright wrong labels and assessments. We had the fortune to meet many people in the Communication Mentor course who have much to teach the rest of us about their hidden gifts.

At a conference on the West Coast, 6 of my kids and I met one great example of this. Peyton Goddard of San Diego sheds powerful light on breaking silence. As someone trapped without capacity for speech for two decades, she harbored deep insights and profound comprehension about the world around and inside of her. At the conference, her mother read Peyton's poetry; her presentation knocked my socks off.  Our presentation of Irish dance that evening had a similar effect on her, as she needed strong persuasion by her father to leave us after we finished our show and took time to meet her and her family.

Until the bonds were broken as a young adult, she was thought to be severely intellectually disabled, and faced a life I wouldn't wish on my worse enemies. In her book, I am Intelligent, co-authored by her mother Dianne Goddard, Peyton chronicles an interior life and incredible journey filled with despair and hope. Her breakthrough came, when at age 22, she typed "i am intlgnt" on an electronic device offered by Dr. Robert Friedman-who, like her parents, knew that Peyton had much to share with the world after being dismissed. She is the first person in the US to graduate as valedictorian from college using facilitated communication. Her book is not for the faint of heart, but I couldn't put it down as I laughed, cried, and gasped through the contents.

Billy won't have to wait 22.7 million minutes to try to gain access to his brother's disabled iPod. Someone will figure out how to fix it. This energetic teen is already proving what Anne and other family members knew all along: that he possesses gifts which need to be unwrapped and enjoyed. We all do. 

Supporting Friendships: One parent's reflections

My son became the team's set-up person and a sort of general motivator and promoter.  Although he did not compete in the actual timed events at competitions, he attended everything and made himself invaluable.  That year our Middle School Science Olympics won the State Championship.  My son was there in his team shirt, was photographed with the trophy, chugged soda at the victory party, and was lauded by the School Board.  He had friends on the team, and such was his new status that he attracted friends off the team.  He had arrived.

He continued with the Science Olympics all through middle school and high school, and although the team never won the state championship again they came close.  My son decided that his teammates were giving in to too many non-scientific distractions, and doubled his efforts to assure that everyone attended practices.  He fanned the flames of team spirit to the very end of senior year.  When the students celebrated their impending graduation with a special Science Olympics party, the teacher who first accepted him awarded him a plaque: "For the student who was the heart and soul of this team."  

On graduation day, my son joined the procession to the stage and walked along the receiving line of school dignitaries and honored scholars, shaking the hand of each in turn, until he came to the school's top student, the winner of a Presidential Scholarship to M.I.T....and his friend from the Science Olympics.  This young man stepped forward from the receiving line and, in front of the entire crowd in the packed auditorium, embraced my son. 

This heartfelt experience taught my family many things that we might not otherwise have realized.  As I write this, my son is 27 years old and I am working as a consultant to other people with disabilities and their families.  I find that when I rely on the following "working principles," wonderful things continue to happen for him and for the other young people I serve:

1. The bonding strength of common interests.  People often respond with greater confidence and comfort when they are asked to include someone in a specific, mutually enjoyed activity than when faced with a more nebulous request to befriend that person.  Since friendship doesn't appear or grow in a vacuum, it is difficult to contemplate in the abstract.  When people are supported to pursue a common interest directly, friendships may develop tangentially out of that interest.

2. The power of the personal request.  Whenever possible, it is more effective for our children to take the initiative and request to be included than to have an intermediary do the job.  Asking is so simple to do, yet too often we parents become discouraged, and may inadvertently discourage our children, due to fear of rejection.  We forget how amazingly well many people rise to an occasion when they are approached directly and personally.  We need to model and teach our children, at an early age, the simple behavior of asking to join in. 

3. The dignity of giving rather than receiving.  A friend of mine, diagnosed with autism many decades ago, once complained to me, "Why am I always in the box marked 'receive' and never in the box marked 'give'?   A great deal of special help, programs, and supports had been organized for her over the years, yet she was often very unhappy.  It turned out that she was yearning for the dignity of having others share their problems with her, ask her advice, and accept her comfort.  If we are to support true friendships for our children, we need to help them find ways to give to others and to be valued in that role.

4. The right to pursue big dreams.  We start out on the right foot when we honor what each person likes best, and don't feel limited in our choice of activities.  Every activity, no matter how specialized it may seem or what a developed set of skills it may appear to require, contains (sometimes hidden) opportunities for an enthusiastic neophyte to make a contribution and come to be valued as a friend.

5. The effectiveness of learning by doing.  Since friendship doesn't grow in a vacuum, we should remind ourselves that neither do social skills.  Rather than expecting our children to spend their time tediously "getting ready" for the "real world" we should be supporting them to live and learn in it now.  Fortunately, social opportunities come in diverse shapes and sizes.  Children who dislike open-ended situations may be attracted to more scripted activities, groups that hold formal meetings, or classmates who prize specialized routines and knowledge.   Whatever the setting, when motivation is high all of us absorb more social skills from each other than we could ever learn by direct instruction.   

6. The acceptance of unpredictability and surprises as part of life.   We can plan for hospitable, open situations in which friendships may take root, but beyond that we can neither predict nor assure nor control their growth.   We should accept that fact, and not dishonor our children and friends by presuming to micromanage their social lives.

7. The determination to "be there" and stake a claim to a community.   Just being there -- showing up -- regularly, as an ongoing part of a particular community of people, is vitally important in building the basis for friendships.   People who "come and go" have great difficulty in being seen as real members of a classroom or community.  They are perceived differently and, although there may be no harmful intent, group members often interpret a fluctuating presence as a message that this person belongs elsewhere and does not require their personal investment.   People need to be visible in their schools and communities on an ongoing basis.   Presence is a powerful statement of belonging, commitment, and availability to befriend and to be a friend.

Copyright © 2004 Pat Amos

pat.amos@verizon.net