An Interview with Parent Susan Sturms
Lynn: With the advantage of hindsight, what advice would you give to yourself as a younger/less experienced parent, newer to your child’s diagnosis?
Susan: First, I would be more inclined to give myself words of comfort and encouragement than to give myself words of advice. I would say, “Be kind to yourself”. Time spent researching therapies is important; time spent advocating for your child with the school system is time well spent; time spent interviewing and hiring behavioral therapists that are a good fit for your child and your family is a top priority. But time spent getting to know your child and creating happy memories of just being together is the most valuable investment of all. You are on a journey to a deep and beautiful understanding of the value of a human life. I won’t lie – it is difficult, painful, and lonely at times. But it will also include times of profound peace and joy. Believe in yourself. Believe in your child. It is going to be a wild ride. But you can do it!
Lynn: What advice might your younger/less experienced self have for you now?
Susan: Don’t ever give up. Your enthusiasm for making a place of dignity and equality for your child matters. It makes a difference. Even when you are discouraged and frustrated because it seems like your child is destined to be marginalized, never accept that as your reality. Never.
Lynn: If you could do anything differently back then, what would it be?
Susan: I would have looked for a support group for couples sooner. It would have been great to have a place where my husband and I could have be on the journey together, along with other people who “get it”.
Lynn: If you could change something now, what would it be?
Susan: If I could suddenly be powerful over things that are beyond my control, I would get rid of “The Race to the Top” and replace it with “The Journey to Compassion”. Thinking about things that are more within my control, I would spend more time nurturing my relationships and building the community of folks that are already on “The Journey to Compassion”. Our love for our children is an incredibly powerful force. I would remind myself to believe in it.