We have invited Sara to share some of her personal journey with all of us. Sara is the mother of a daughter with autism and also the wife of a husband diagnosed with Aspergers Syndrome. In sharing these stories of struggles and triumphs we learn so much about ourselves. Our search for knowledge and understanding builds strength and develops a deep appreciation of life’s complexities and blessings.
Sara’s Journey… Part One
I am a mother of a young child with autism. My daughter is incredible, amazing, lovely, and very special. How she sees the world is a mystery to me. But I know it is still beautiful and meaningful. As I see it, first I am a mother and second I am a researcher.
Part of what drives my desire to learn about autism spectrum disorder is to know my child and connect with her. It seems a little selfish but it’s true. Of course I want her to succeed in life, and to have all the skills and education that she needs. What mother does not? I want to BE with my child as I am with my other children. I want to love her and know she feels my love and returns it.
The modern day life of a mother with young ones is hectic, even without the extra doctor visits and regular therapy sessions added to the calendar. I used to try and juggle everything on my own, and have just recently found some much needed assistance from outside our family. We’ve just begun receiving help and it is still a struggle to let go of the control that I feel I need to keep, even though I’m not sure I really ever had it.
Part of my reluctance is that I would really like to protect her from people that don’t understand her. It’s like those kids who are really tall for their age and people talk to them expecting them to respond like an older child. Only with my daughter, when we jump to translate the social awkwardness, they will treat her like a child many years younger. I’m not sure which is worse.
A book I am currently reading is called The Complete Guide to Asperger’s Syndrome by Tony Attwood. I am stunned at how someone who has never met my daughter can describe her so accurately in just the first four pages of his book. I stopped and read the pages aloud to my husband, who also has autism like characteristics, and he was equally impressed with the introduction. I hope to have more insight into my daughter’s mind in the rest of the book. I’ll let you know.
Sara’s Journey… Part Two
My husband and I watched the Temple Grandin Movie a while back. I was discussing the movie with my daughter’s occupational therapist, who I really respect. She asked me what my favorite part was and I instantly thought of when Temple said something like (it may have been in the movie commentary) that she thinks that children need to be thrust into the real world instead of constantly put in artificial therapy environments if they truly want to learn how to cope.
That led to a whole discussion on what is too much therapy. I realize that there are many children in therapy all over the world who really need to be there for every session in order to function. But for my daughter, and in our family situation, I feel that we could very easily be too far immersed in the world of therapy that we may actually be missing a little of the real world. My daughter’s OT says that she agrees … that she was trained that therapy should work like a car mechanic… come in for tune ups and checks, and overhauls, and then, back on the road again.
My daughter has had Physical Therapy (2 hours a week), Speech Therapy (1/2 hour a week), Occupational Therapy (1 1/2 hours a week, and Behavioral therapy (5 hours per week). I am grateful for the opportunities that our family has for helping my daughter to grow and develop. We know that she has made amazing progress in the last 3 years and much of that has been a result of many therapists’ hard work.
On the other hand, I have recently made the decision that just because someone says that my daughter needs something, it may not be what is best for her. The company we are currently receiving behavioral therapy from encourages 15 hours of therapy each week ( 5 hours – 3 times a week). This overwhelmed me. The sessions take place in the home but the amount of time spent with a therapist just boggled my mind. I insisted on no more than 9 hours a week. After the first session we changed that to 5 hours per week. I can live with 5.
So my daughter has a whole lot of therapy. Therapy is good. But for us, there is such a thing as too much. I guess that is why I am so excited about Warrior’s Soul therapeutic riding. My girl is enjoying being in the beautiful outdoors. She is enjoying riding horses. She is gaining real world confidence, yet she is in therapy. I love it. It’s like going on a field trip in school… it’s educational, but way more fun than sitting at a desk. ~Sara