April 2014 Prism
Family and Relationships
By Karen Wolf-Branigin
Director, Autism NOW Center
The April 2014 Autism NOW Center Prism newsletter is about family and relationships – and there is nothing more important to humankind. I’ve had the privilege of working with adults with all different types of disabilities and their families for many years. I’ve learned so many lessons along the way and would like to share this story with you.
A young man in his 20’s lived with mother. He worked full time in a store and rode his bicycle to and from work in all different types of weather. He lived out in the country and in the winter rode after dark. The winding country roads could be quite challenging, even for the most skilled cyclist.
The young man desperately wanted to get a driver’s license. His mother was against it. She felt his intellectual disability would prevent him from passing the test. She was convinced that if he could pass the test, he would get into a car accident. She also worried that he wouldn’t have the money to pay expenses.
The young man asked his paid service provider to hold a person-directed planning meeting to discuss the issue. They agreed, planned to hold it at his home so it would be most convenient for his mother and she agreed. They encouraged him to invite other family (his brother and aunt) and friends (two neighbors) who supported his dream of getting his license.
Following a delightful introduction with coffee and cake, each person offered their support for this young man’s dream. They vowed to support him in his quest. His mother listened without much expression on her face. After everyone spoke she politely thanked everyone for their time, stood up and said, “I cannot believe how you could come into my home and gang up on me. I appreciate that you all care about my son but I’m so hurt that you don’t also care about my feelings and opinions.” And then she left her own kitchen table, went into her bedroom and slammed the door closed.
My lesson learned? I was so intent on advocating for the young man and supporting him that I neglected to consider his mother’s situation. I spent many weeks following that meeting reaching out and apologizing to his mother. We all have dreams – and we all have relationships. Let’s be sure to consider both as we live our lives.
Family and relationships: Autism NOW Resources
What do self-advocates say about personal relationships with partners? Self-Advocates Becoming Empowered tells us in their work “Self-Advocates Are Speaking Up About Having a Sweetie
Celebrate the joy that parent Bonnie Zampino shares with us about her son
Family and Relationships: What are we learning from others?
The Arc’s National Sibling Council
welcomes all siblings and those who support siblings who are members of The Arc either at the local, state or national level. The Council will offer opportunities for:
- Networking – meet other siblings – face to face and online
- Support and resources for those needing guidance in situations unique to their family (e.g. introducing your sibling to your girlfriend and their family – or – caring for your sibling after your parents are not able to do so)
- Celebrating the sibling relationship
- Supporting the advocacy and programmatic efforts of The Arc at all levels (local, state, national)
- Leadership development and training through involvement in standing committees, ad hoc committees and task forces
Join the Council – Your membership in The Arc at the local, state, or national level allows you to join The National Sibling Council for no additional cost. Not a member yet? Join The Arc here
. Note: you must be a member of The Arc to join the Council.
Sibling Support Project
Sibshops celebrate the contributions of brothers and sisters of kids with disabilities. Learn how brothers and sisters
engage in serious discussions and lots of fun and games as they share their experiences with others.
Family and Relationships: What does the research tell us?
Adolescents & Adults with Autism: A Study of Family Caregiving Report #6
Reflections from Adolescent Siblings who have a Brother or Sister with an Autism Spectrum Disorder Mailick Seltzer, M., Wyngaarden Krauss, M, and Orsmond, G. (undated)
In this report, brothers and sisters talk about what it’s like to have a sibling with autism. Their joy, frustration, maturity, and advocacy give us insights and recommendations about their lives.
Bayat, M. (2007). Journal of Intellectual Disability Research v. 51 part 9 702-714
This study describes the level of resiliency
that families who have children with autism have achieved to help them live typical lives.
Relationships, Weddings, and Marriage
By Amy Goodman
Co-Director, Autism NOW Center
Being diagnosed as an individual on the autism spectrum was one of the best things that has ever happened to me. It was due to this that I was able to learn how to have confidence in myself. Knowing what it was that held a black cloud over me was a relief, and I was able to let go of the cloud and have a new outlook on life.
I was able to jump the hurdles, one by one, and move on with my life. I had a direction and a renewed sense of self-awareness that I didn’t have before I received my diagnosis. I was able to take the next step and try again at relationships. I found that I could be accepted in my community for who I am. It didn’t matter that I was different or that I did things a little differently.
I joined a square dance club and found a partner who had similar social challenges. I found someone who shared my same interests; I basically found my soul mate. We dated for about a year before we decided that we wanted a deeper commitment from each other. It was then that he proposed to me and we got engaged. It was a big step for me, but I took that risk and said yes to his proposal. Now, almost a year later, we are ready to get married and embark on a lifelong journey.
Relationships are a lot of work. Everyone has differences and disagreements. Two individuals with Asperger’s syndrome are no different. We have to learn to accept and live with each other’s idiosyncrasies because neither one of us wants to give up our rituals (nor should we). There have been many challenges and disagreements to overcome, such as what church to attend and how often, or even small things like how we prefer to cook our food. We each have our own habits and preferences. He likes his toothpaste, toothbrush and comb to be placed in plastic bags. He likes everything to be in a certain place and lined up in a row. All of the movies that we own have been categorized and numbered by topic. He has an elaborate ritual for everything and it takes him forever to complete each ritual. On the other hand, there are also things that I’m particular about. When we are talking, I do not like it when he gets too close to my face. I need more than an inch between our faces. I also have a hard time with being touched. I need to be warned if he wants to hug me because my body tingles and hurts when touched very lightly.
How do we handle these differences as a couple? I accept him for who he is and he does the same for me. If we don’t agree, we compromise. It works out quite well. No one is perfect, so I have learned to be understanding of the fact that it takes him a little longer to do things and he has learned to give me some type of warning prior to hugging me.
We are in the process of planning our wedding. On June 20, 2014, we will get married at a square dance celebration on West Virginia Day. It will be an outdoor wedding in the park filled with trees and flowers that should be in bloom. Nothing fancy - just a lot of fun, good friends, and good food. Just remember the KISS. K
imple and S
illy, and that is all there is to it.
By Nicole Jankowski
I read a story on Facebook a few months ago about brothers, Conner and Cayden Long, who were named Sports Illustrated Kid(s) of the year for their effort in racing in Ironman Youth Triathlons. The pair has competed in over a dozen races and they have never won. Not once. In fact, they are almost always one of the last few to cross the finish line. So, what makes these brothers Sportskids of the Year?
Cayden Long was 4 months old when he was diagnosed with Cerebral Palsy, a condition that affects his speech and ability to walk, requiring him to use a wheelchair. His older brother, Connor, does all the things a "typical" 9-year-old boy loves to do: rides his bicycle, swims, runs around with his friends. But he also longed to share these experiences with his little brother, something that was impossible due to the debilitating nature of Cayden's disorder.
Enter the Ironman. One day, the boys’ mother suggested, on a whim, that Connor should attempt to compete in the races, which involve running, swimming and biking all in a one day-long event. The family then decided that Connor would push his little brother in a stroller, pull him in a raft and attach a trailer to his bicycle in these races, all to share the intangible feeling of competition, camaraderie and accomplishment with his younger brother.
There is a bond between brothers that I see each day within my house. There is a bond between a boy with disabilities and his brother that is different than any other I have known. And as their mother, it hurts me in a good hurt kind of way: the pleasure of watching them grow together borders on pain sometimes--it makes me so gratefully sad. More grateful than sad.
Frankie is Dominic's younger brother. They are separated by 20 months and a million different barriers. Frankie is patient and thoughtful, rarely impulsive, always considerate. Dominic is beautiful in the way mysterious kids seem to be, with the uncertainty of what has happened and what will happen lost on his pale skin and his dark sweet eyes. Dominic has autism, severe autism, the kind that makes other kids ask "what’s wrong with your brother?" And there are the other kids, the ones whose parents stand by and do nothing, that don't bother asking. They are the ones who laugh.
What does any of this matter to Dominic? He doesn't notice. When he jumps up and down and flaps his hands in glee, he is happy, he is joyful, he is contented. He doesn't see the people laughing, not because he can't see but because it doesn't matter to him.
But Frankie sees. Frankie answers their questions: "He has autism," he says in a voice that is both challenging and patient. And he can't understand the gravity of this at 7 years old. He doesn't know that a million scientists haven't yet figured out what "this" is. But Frankie notices the looks and the stares. He doesn't get angry or embarrassed. He just does what he has been doing since the minute he was born, since the minute he breathed in room air and became somebody's little brother. Lest you start to give this too much value, Frankie isn't doing anything remarkable or extraordinary, he just lives the life he has been given. He is Dominic's little brother, it's something that is unchanging as a neurological condition, as the blond hair they both share, the blue eyes, the pale skin, the same last name. He buckles his nine year old brother up in the car, holds his hand in the parking lot (when Dominic will let him) and gets two popsicles out of the freezer instead of one.
And I don't understand "this" either. I can't explain it to Frankie in words he will understand, nor convince his youngest brother Gabriel that Dominic means no harm when he calls him "Baby". “I'm not a baby! I'm four years old," says Gabriel, indignant. But Frankie knows that even the word "baby" is a big victory; two years ago, Dominic couldn't identify anyone in the family by "names".
Frankie explains it to Gabriel in the unique way a little-big brother can: "Dominic is special, be kind."
And the little brother looks up to Frankie, "Special? Like Zachary at school, Frankie?"
"Yes, like Zachary." says Frankie, patiently.
And then both brothers look at Dominic and nod conspiratorially, because special is enough of an explanation when you are 4 years old and 7 years old.
So while I don't know the "why", I know how brothers like Connor and Cayden Long can race in competitions, come in last and see it as the biggest victory in the universe.
Because they are special.
But mostly because they are brothers. This is a fact that supersedes logic. It's simply...biology.
And being brothers means that they don't need words to understand each other and that autism or cerebral palsy mean almost nothing.
Being brothers means you are born into something that you cannot change and after a while, you don't know if you even would.
Nicole Jankowski is a mom of 4 children and 2 step children and married to her Prince Charming. She writes, she parents, she goes to school. She likes vintage dresses and eavesdropping on strangers. She learned at an early age that humorously pointing out her weaknesses (like the fact she writes poetry and has cankles) was a smart move. Now people who meet her are more likely to go home thinking "Man, that Nicole is a HOOT" instead of "Someone should tell Nicole not to wear capris". Check out her blog at momof4istired.blogspot.com.