Eliza Factor, author of the memoir STRANGE BEAUTY: A Portrait of My Son and founder of the community center Extreme Kids, has learned a lot in the 14 years she's been parenting her three children, Felix (14), Miranda (10), and Happy (8). Felix has autism and cerebral palsy; and, in her book Factor writes beautifully and honestly about her family's joys and challenges. I caught up with her to learn more about her family and see what advice she had to share with other families.
What advice would you offer parents who are just getting their child's diagnosis?
Diagnoses are educated guesses about one facet of your child. They can be very useful for obtaining services, therapy and medical treatments; they may help you better understand how your child's body and brain work. But don't get too fixated on them. Remember that they are provisional assessments, and reflective of our culture.
If you are white and upper or middle class and your son lunges around yelling instead of staying at his desk at school, he may well receive an ADHD or autism spectrum diagnosis; teachers and therapists will try to figure out why he is acting out, alter lessons so that he can make sense of them, teach him calming techniques and other ways to master himself. If you are black and/or poor, and your son acts this same way, he is more likely to be punished for misbehaving, or given a "behavioral disability" diagnosis, which comes with fewer services. Sometimes, our use of diagnosis ends up sorting and dividing children instead of seeing the humanity inside of each of them.
Do you have any advice or tips for navigating the support systems for kids with disabilities?
Talk with other parents who have already been there, along with those therapists, teachers, or doctors who appreciate your child. Get involved with disability groups, like Parent to Parent, which operate in states all around the country and can match you up with parent mentors. If you live in NYC, come play at Extreme Kids or go to one of our Cocktails and Bureaucracy parent evenings. If you don't have anything like this in your area, and want to start one, you can download a free DIY toolkit from Extreme Kids, get some friends together, and begin.
How have Felix's disabilities affected your other children?
The conventional answer to this question is that his situation has made my daughters more aware of the differences of all of us and of the complexity of the world we live in. It's hard to pinpoint Felix's influence, as we don't have a sample Miranda or Happy who does not have Felix as an older brother. One thing I can say: Felix's charisma, his sweetness, his humor, his paralysis, his rages, his opaqueness have given them a certain perspective.
Can you say a bit about how your community has helped your family chart a new path and what that looks like on a day-to-day basis?
When Felix was four or five I met Jamila, whose son was also, as she put it, "special needs." Bashir was a year older than Felix, and could jump and run and climb without any help from his mother, whereas Felix's physical disabilities kept him much more stationary. But neither fit in with their peers and neither showed an interest in language. In one of our first conversations, Jamila and I talked about the things we'd done to help their verbal abilities along. It wasn't a Eureka! conversation, it was a "Oh, yeah, me, too" conversation. But it was so precious: I wasn't alone! What's more, Felix and Bashir got along.
Jamila was one of the people who helped me start Extreme Kids & Crew, a community center that uses the arts and play to bring families raising kids with disabilities together. We wanted to create a place where it would be easy and fun to meet other parents, children with disabilities and their siblings, a communal living room for everyone, regardless of disability, income level, religion, race, background, a place where we could all be ourselves without having to explain why we were the way were.
Seven years later, we have a staff of five that oversee summer camp, after school programs, cocktails and bureaucracy parent evenings and the heart of our program: two sensory gym-play and art spaces located in Title One public schools. During the school week, the students benefit from our sensory gyms. During the weekends, we open the doors to families from all around NYC, who come and play on the equipment or take part in art, music, movement programs.
Anything else you'd like to add?
Just want to reiterate, to anyone out there who is confronting disability for the first time: You are not alone. Almost all of us are dealing with disability in one way or another. Find people who will understand and support you. Those who have made a provisional peace with their own disabilities are better and handling them in others. Seek them out.
Jamie Pacton lives in Wisconsin where she enjoys each day with her husband and two sons. Find her @jamiepacton.