This is a guest post by Allison Rogers. Allison is a lawyer in private practice in Washington D.C. and volunteers actively with Autism Speaks in their housing policy initiative. She has a younger brother, Adam, who has autism.
For as long as I remember I would ask my Mom these questions. Is Adam going to live at home forever? No. Will he live with me when I am older? He will have a house of his own one day. When’s that going to be? I don’t know, sometime after he graduates high school. Who’s he going to live with? Ideally Jeff and Joe, maybe a couple of other boys, and a support staff.
I will be completely honest and admit that I had no role in my brother’s summer of 2010 move into a group home. Throughout the years, my Mom promised us, without exception, that Adam would have a home of his own one day. I think this was her way of protecting all of her children and not just the one who needs the most protection. She took on the responsibility, not only because she was in the best position as a mother to advocate on his behalf, but because she did not want to leave this huge responsibility of mapping my brother’s future to her daughters. As the matriarch of the family she set the tone for familial relationships. Stacey and I, as sisters, must love and support Adam, but Shari, as the Mom, will make the big decisions.
Fast Forward to June 2010. I am locked in the basement of the law library studying for the bar exam, receiving texts from Mom. He’s moved out. Are you ok? I feel weird. Do you need to talk? Ok.
We talked. I did my best to assure her it was a transition, transitions are always hard, and once she gets used to the new living situation both she and Adam would be better off. I tried to comfort her. I remember saying, “it’s like when I went off to college; it’s like when Stacey went off to college. It’s a huge, but completely normal adjustment. And most importantly, he’s FIVE MILES AWAY.” And that’s how, just for a moment, the roles switched and I became the protective one, but not of Adam, of my Mom.
August 2010 I made my first visit to Adam’s home. The descriptions I heard that the house is huge; the house is beautiful; the house is individualized to your brother’s and his housemates’ needs were not inaccurate. The house is huge. The house is beautiful. The house is Adam. Adam lives with four other boys. Two of the boys, Jeff and Joe, Adam grew up with. They each have their own rooms, reflecting their personalities, and their bedroom doors are adorned with the first letter of their names. They have ample living and dining space, a back and front yard, a television and even a Wii.
I love Adam and his new independence. Of course, the house did not cure him. He’s still Adam. He still has his moods and he will still have his nights where he stays up all night shouting to whoever will listen. He still repeats words, sometimes hundreds of times, and he will still rip his shirts and blankets for no apparent reason. Yet he is happy. He is happy with his house. He is happy with his friends. He is happy to come home to my parents’ house and he is happy when we go to the house to visit him. I see pride when he shows me his room, points to the family pictures on his bedroom wall, shows me his Wii bowling skills and sets the dining room table.
I can honestly say Adam moving into a group home has given our family the best of both worlds. He has independence. My parents have their independence. Yet we are five miles and ten minutes away from family time.
This is a response we received from a young man with Asperger’s Syndrome who received an Autism Cares grant.
The Autism Cares Grant help me to establish some independence and get back on my feet. I’ve been struggling as I try and navigate life on the autism spectrum. For a while I was letting my struggles affect me in other areas of my life. I was taking all of the negative things in my life out on other people. The Autism Cares grant not only helped me pay my rent and give me a nice place to live for 4 months it is going to help me get other areas of my life up and going the way that they should be. I’m very excited and appreciative of the Autism Cares grant and know that it will be put to good use. This will allow me time to get on my feet and try and find a good job for me. I have Asperger’s Syndrome and I really want to become as independent as I can and it’s something I am working on doing. My parents were losing their house so I was going to be left without a place to stay. The Autism Cares grant helped me help my parents save their house so not only myself but my entire family could keep a roof over their head as well. I’m now able to pay my parents rent I owe them for 4 months thanks to the Autism Cares grant. Thank you to everyone at Autism Speaks.
To learn more about our Autism Cares program, visit www.autismcares.org. For more information on transition and independence for young adults and adults with autism, check out our transition tool kit!http://www.autismspeaks.org/community/family_services/transition.php
Welcome to this installment of ‘Topic of the Week.’ These topics stem from submissions from our community. If there is anything in particular that you would like to see featured, please contact us!
Life skills are important in the growth and development of a person on the autism spectrum. How do you teach your child independent life skills – home living, personal care, etc.? What are some difficulties you have faced? Have you used any strategies that worked particularly well?
To learn more about teaching life skills, visit this edition of Community Connections.