Interview: Susan Senator and The Autism Mom's Survival Guide
By Shannon Des Roc... on March 24, 2010
BlogHer Original Post
Did you know that autism parents can choose an identity other than Avenging Warrior or Martyr? That it is reasonable to aim for happy lives for us and our children, despite our kids' challenges? If this is news to you, then you need to read Susan Senator's forthcoming The Autism Mom's Survival Guide, A.S.A.P.
The Autism Mom's Survival Book is an important book, a desperately-needed book, a book that can help the next wave of autism parents sidestep the kind of post-diagnosis anxiety & depression that hit me in 2003 due to a lack of guidelines for my new Autism Mom identity. I spent my first two years as an autism parent raging against my son Leo's autism -- until Susan's 2005 book Making Peace With Autism taught me to look past the diagnosis and see Leo in the present, rather than in some theoretical "real boy" future. But where Making Peace With Autism focused on how to approach our children, The Autism Mom's Survival Guide tells us how we can approach ourselves. It is a long-needed toolkit for autism parents, with plenty of helpful advice for any stressed out parents of kids with special needs. AMSG includes not only Susan's voice and experience, but a constellation of wide-ranging insights and opinions from other autism parents. Here's what Susan had to say about it:
What inspired you to write The Autism Moms Survival Guide? How is it different from your book Making Peace With Autism?
I decided to write AMSG after being asked "How do you have any fun?" by other autism parents, while giving talks around the country. I found that so many parents felt that they were just barely hanging on to family life, marriage, even sanity. Some told me they don't always have time to shower. But I knew that there had to be more to their lives than this kind of struggle, because we are multi-faceted, resourceful, strong-willed human beings. The life force is very strong in all of us. So I set out to discover how -- given the tremendous difficulties of life with autism -- was it possible to be happy anyway? To find personal fulfillment, large and small? How could other parents learn from one another ways to still have a life of their own even with autism in their lives? I knew it was possible but what were some strategies? What were some new, positive ways of seeing ones life that could help soften one's perspective?
How did you decide which of your varied topics -- from new diagnosis tailspins to parents cultivating healthy sex lives to the need for biomedical/neurodiversity community bridge building -- to include?
I looked through my own blog and at many other autism blogs to figure out what was on people's minds. What were the basic parts of adult life and how were autism parents dealing with those parts? Did they feel successful? If so, what could they pinpoint that had helped them? What became clear to me was that autism moms and dads did, in fact, find joy and satisfaction in their lives but that they had learned a new way to see their lives, to see success. And, they had also figured out their own particular formula for feeling good day-to-day, or even moment-by-moment. What I heard about was sex life -- or lack thereof; adult friendships; the emotions of taking your autistic child out into the world; the community's views on therapies and what is autism, and how this in itself has an impact on the parents' happiness and self-esteem. I also heard that fear of the future affects an autism parent's happiness. I set out to learn how we can still have joyful lives, even with the difficult reality.
How lovely that you included so many different parent voices and perspectives. How did you find these parents? Were they people you already knew?
Talking to the other parents was so much fun! Many of them came to me through my blog. Sometimes I called a friend or two but I also wanted to hear from strangers living very different lives from my own. My requests for interviewees made the rounds on the Internet email support groups, and before I knew it, I had about 50 to talk to on the phone or in email or in person.
AMSG frequently touches on depression -- both its prevalence in autism moms, and your own struggles. What advice do you have for autism parents who are having difficulty advocating for themselves?
These days we have the miraculous Web for finding support and information, which is particularly helpful for those who cannot easily leave their homes (and many autism parents do have trouble taking their kids out at one point or another). There are blogs, websites, Yahoo-groups -- so many ways to find kindred spirits to help. There are also traditional groups in one's town, such as parent-organized special education groups located at the PTA level; or autism organizations that you can find through autism-society.org (the ASA), and also through the ARCs (thearc.org). Other parents will lead you to everything from understanding legal issues to what kind of vitamin supplements you may want to try, to what doctors really "get it." And my book has also been called a support group in a book!
You wrote at length about parents taking time for themselves, with some really great ideas for retaining our identities outside our roles as parents, and the role of exercise in both physical and mental well being. How on earth do you find the time? Did find time become easier as you children got older?
There is nearly always a way to exercise for 30 minutes a few times a week. As hard as it may seem, if you can force yourself to get up and move -- to a video, to music (aerobics, running in place, dancing, doing Wii fit, as some autism moms do) -- you will feel better on so many levels. You don't have to leave the house if childcare is a problem; pop in a DVD and see what you can do for a few minutes. This is how I have often done my bellydancing. Push the couch aside, tie on a hipscarf and go. My kids wander in and out and just deal with it. And yes, as they got older they are more independent and so this did get easier. But I also found that I could throw kids into the double stroller and walk a bit, in the early days. My chapter on "Me, Myself, and I" has lots of different parents' ideas on how to fit in some kind of activity that is just their own: whether it is scrapbooking, taking care of betta fish, bellydancing in your living room, or riding a Harley with your husband. Writing a blog. There are so many ways to "escape;" it is mostly a matter of realizing that you can and that you *should*. You deserve the best life you can have, even with great struggle in your family. You just have to allow yourself to think that way, and figure out one or two possible "escapes" that you can work into the life you have.
I was relieved to see you talk frankly about residential placements, and what a blessing they can be despite lingering and sometimes overwhelming parental guilt. Did Nat have any unexpected reactions to his new living situation, positive or negative? Did his brothers? Did you?
Nat seemed to be okay with his move-out. I was surprised that there were very few outbursts in the two years he has lived at the school. I think what helped was that we made it very clear that this was still his home. We set up regular weekend routines for him when he comes home. We gave him a big farewell party the day before he moved out, and invited people from his new residence. We made it into a positive thing -- which for the most part, it was -- and we managed to be okay with it that way. The party planning was also a healthy distraction for me in those last days of Nat at home.
Nat now seems to prefer the residence because there is more structured activity there. Structure comforts him, gives him a sense of purpose. That's why he also loves his part-time jobs. He loves clear expectations. We could not be as clear as the residence because we are a fly-by-the-seat-of-your-pants family.
I, of course, was completely broken to pieces by Nat's move-out, I have to say. No matter what the evidence was that he was doing fine, I missed him so much and I beat myself up for sending him away to live. I had to give myself months to adjust. I took a lot of bike rides and cried a lot. My husband accompanied me on any visit to the residence so that I had his support during the sad drive home.
Nat's brothers thrived without the stress we were all living with. I hate that this is true, but it is. My youngest especially was at times traumatized by Nat's outbursts. Without the fear and stress, we could do more things for our other two sons, be spontaneous. I also think that having Nat come home regularly and for planned events makes them feel more relaxed around him and actually more able to enjoy him now. Although they never jump for joy at the sight of Nat, they are beginning to smile at Nat's progress. It's not much, but it's something.
You interwove Nat's younger brothers' perspectives through the book via anecdotes -- some of them heartbreaking, such as your youngest child Ben's fear of Nat's increasingly violent outbursts as an older teenager. Have you considered writing an autism siblings' survival guide?
I would love to write an autism siblings' survival guide but my two other sons are not big talkers. They don't enjoy tapping into their feelings around Nat. I would definitely look for other siblings who DO want to talk. Maybe my boys would add to such a book once they got older (?) I hope so, I think that is such a needed book. That, and a book on autism and puberty.
What one or two thoughts would you like to distill from your book, to comfort and inspire families of children with a new autism diagnosis?
I want parents to understand that happiness is possible, even with the greatest struggles life brings (like autism) but that you have to adjust how you look at happiness. Joy and fulfillment might not be what you originally thought. You may have to evolve a new understanding of autism, of your child. That will take some time. Get support for help in this.
But your view of your child is only one part of the happiness/survival equation. In order to be happy in the autism family, you have to give yourself permission to be. And if you focus in on your own passions and likes, you can figure out one or two things that can be just yours, and delve into them here and there as your situation allows. The important thing is to believe that you have the right to a life of your own, that you must take care of yourself, too. It is possible, but you may have to get kind of creative to do this!
More on Susan, Autism, Parenting, & Attitude:
- Holly Robinson Peete: Shifting Focus: 8 Facts About Autism the Media Is Not Covering
- Susan Etlinger's MOMformation Interview with Susan Senator
- Sharon DaVanport: Dear Autism Critics, Parents, and Neurodiversity Opponents ~Open Letter
Shannon Des Roches Rosa, unlike Susan, still gets very irritated by people who are wrong about autism on the Internet, and writes about it on her personal blog, www.squidalicious.com. But she prefers positive activism like co-editing the Can I Sit With You? Project, helping found Special Ed PTAs, or discussing the myths and realities of parenting kids with special needs on KQED Forum.
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