[Editor's Note: This article was originally run on April 4, 2010. With Betty's permission, it is being re-posted as a tribute to Rose and all the other individuals with autism, as well as to all the loving family members who share in their struggles.]
Betty Refour is an artist and a fellow member of the EtsyTwitter Team and Unique Women in Business Team. Her sister, Rose, has autism and Betty is her caregiver. Together, they use art to advocate for causes that are important to them, including autism awareness. Here is their story in their own words:
Rose is 44. I want to say that she was about three – four years old when diagnosed. Our parents had separated while my mom was pregnant with her and divorced shortly after she was born. At that time, very little was known about autism, and I imagine it was overwhelming for our mom. We were living in Chicago, and although she was a nurse and absolutely wonderful, she decided to move back to Oklahoma City to be closer to her parents. Our grandparents were wonderful with Rose. She would have meltdowns in the middle of the grocery store, and my grandmother would sit on the floor with her and hug her until she calmed down. Our grandfather would sit with her on his lap on a rocking chair and rock her for hours which calmed her down.
Rose Refour
- Rose was one of those children on the spectrum that initially communicated, but then, at a certain point, withdrew into herself. We didn’t understand, and we wanted our Rose back. Everywhere our mother took her for help, they suggested she institutionalize her, but she wouldn’t have it.
Ovals Abstract Art Note Card - Artist with Autism
I am six years older than Rose, and she would draw and write on my homework, on my books, on my bedroom walls and on every wall in the house. At first, it upset me, but then I realized she had something to say. She was doing it through art. And by the way, her spelling was better than mine! I gave her some blank notebooks that I had, and she started to write and draw. The rest is pretty much history. Where I spent hours on one drawing hers were effortless. She had her own style, and it was beautiful. I would have to type some of my homework assignments (remember, this was years ago before computers!), and if I left them in or near the typewriter, Rose would type on them. So, I gave her my typewriter. I wanted a new one, so it was a ploy, but typing, writing and drawing helped her. It gave her an outlet to express herself.
Backed into a Corner Note Card - Artist with Autism
- Rose went to a school for people with disabilities where they did a lot of crafts. Our mom eventually stopped taking her to those awful therapists who kept encouraging her to institutionalize Rose, and I am so happy that she did. We would sit for hours and talk to her; sometimes she responded, and sometimes she didn’t, but we never gave up. We encouraged her to write the answers if she didn’t want to speak to us, and sometimes she would. It was not easy for any of us, but we hung in there.
Abstract Art Glass Tile Pendant - Artist with Autism
At that time, mothers were considered to be the blame for autism. They were labeled “bad mothers,” and all sorts of crazy notions surrounded autism. Because some of the people that were my friends were no longer allowed to come over to our house once their parents found out that Rose had autism, I didn’t have a lot of friends. The irony is that when I moved home four years ago while our mom was battling cancer, I got much the same response. People who I thought were my friends shocked me when they suggested that I leave Rose somewhere and never look back. Not only did I not know them, but they didn not know me either! Our mom died three months after I moved here; it will be four years in June.
Rose goes to a program during the day, but when we’re at home, we paint and craft. She loves all types of music and can play the piano, although she has never had a lesson. She loves Barbie dolls, stuffed animals, shopping, jewelry, press-on nails, nail polish, wigs – although she doesn’t wear them, she likes to style them – and traveling. She loves to stay in hotels; I think it makes her feel like a princess. And she still carries around a note book – just in case she has something so say.
Easter Card
- The advice I would give to anyone with a loved one on the spectrum is never give up. Somewhere inside, there is a beautiful person trying to figure out how to communicate with you. Figure out a way to help them.
April is National Autism Month. According to the Autism Society of America, autism is a complex developmental disability that typically appears during the first three years of life and affects a person’s ability to communicate and interact with others. Autism is defined by a certain set of behaviors and is a “spectrum disorder” that affects individuals differently and to varying degrees. There is no known single cause for autism, but increased awareness and funding can help families today. For information on the autism community, life with autism or research and programs, visit the Autism Society of America website.
{ 6 comments… read them below or add one }
This is such an inspirational story. I’m glad more is known about autism and I hope that makes it a bit easier for families affected by autism to cope. Betty’s advice to “never give up” may sound simple but it obviously requires huge amounts of energy, patience, humor and love and those things help everybody get through everything. And we all need to find a way to communicate.
Betty and Rose are both such talented artists. What a beautiful way for them to connect with each other and us!
Thanks Lois for reprinting this. I didn’t see it the first time.
thanks Lois!
My daughter is ‘on the spectrum’ with high functioning Aspergers, but I appreciate and admire Betty and her work greatly. She has many gifts: deep love, generosity, and especially, Rose. God bless them both.
My youngest daughter is on the autism spectrum. Someone just asked me today “what” autism is and for the first time ever, I wasn’t sure what to say. It’s a mess, sometimes. But, with lots of help, my daughter and family have learned to be all we can be in the moment.
We also own a Rose original. It’s beautiful and sits in a prominent area of our living room.
My 15 year old nephew was diagnosed at 4. My brother gave up his career to work from home so Daniel could blossom into an amazing youg man. He’s very musically gifted – artistic – a mathematical genius and all around wonderful. He spent two weeks with me last summer. It was amazing to see him with the tigers and lions – there’s a kindness about him the cats understood and responded to immediately. Daniel doesn’t like surprises – he understands his limitations most of the time. We try to explain to him what’s expected – sometimes it works sometimes it’s a mess. Mostly, we love him so much.
I can’t help but fall in love with Betty after reading this. She’s an incredible person in recognizing the joy in being with Rose. If I lived near by I’d want to be included in at least some of the crafting sessions! How joyful and fun they sound…
It’s good to read and see more stories like Rose’s. Thanks so much for bringing their story to more people in your wonderful blog!