Susan Hartung has four children and two are on the autism spectrum. From the challenges of trying new therapies to the moments she couldn't help but watch "typical" families, Susan shares her journey as a mother and educator.
Tell us about yourself.
I am a 61 year old mother and teacher. I have four children ages 21-31 and my two oldest are disabled by autism, and epilepsy and a few other of the associated things that usually go with autism (OCD, sensory issues). My 24 year old just graduated with a degree in education and my youngest is about to start his last year at the University of Maryland with a degree in chemical engineering.
My B.S. was in recreation and health, and the first 25 years of my adult life I worked as a secretary, state grant administrator, paraeducator, and helped my husband run our retail operations. At age 49 I went back to school and got my Masters degree and have been teaching high school English since then to both special education and general education students.
What was the journey of your son and daughter's autism diagnoses? Is there anything you know now that you wish you knew then?
The journey has been exhausting having two children on the spectrum. When my son was finally diagnosed at age 3 autism was not a common diagnosis. They told me there was almost no chance for reoccurrence. Four years later my daughter was born and she was the complete opposite of my son. He was very delayed in development, she was advanced. All the specialists told us she would be fine, but by age 2 1/2 there were significant behavioral changes.
Autism became a hot topic while my kids grew up. I know part of the reason they feel there is an "epidemic" is better diagnosis. But there are still a lot more children born in the spectrum than there were decades ago. Anyway, every two years we kept trying the new "therapy" that would help them (Lovass, Secretin, Facilitated Communication). I don't regret trying any of them. But I wish I had tried them with a different attitude — more like, let's see if this helps, nothing ventured nothing gained. But, my husband and I were new at this, we couldn't help thinking everything would lead to a great breakthrough.
Have you faced any challenges — personally and/or professionally — while raising two children on the spectrum?
So many challenges — my husband changed his whole career path to be more available at home. Financially, so much money spent. Personally, so many opportunities passed over. Perhaps the biggest challenge was trying to provide as normal a life as possible for our two non-disabled children while raising our disabled children. I'm sure I cheated everyone at some point.
We did the best we could, but it was hard. When they were young, I remember watching "typical" families and wondering what their life must be like, and wishing that was us. Thirty years later, those feelings still surface now and then. These days my biggest worry is that when I die Warren and Emily will think I've deserted them, and don't love them anymore.
What or who have been the most valuable resources to you as a parent, especially while balancing the upbringing of two children on the spectrum and two children who are neurotypical?
Other families with children with disabilities — I had some great mentors early on, and I got very involved with organizations and advocacy groups. Much strength and wisdom found there. Working at maintaining strong friendships has sustained me a great deal. I come from a very small, very dysfunctional family. My friends are my family.
How did your career path reach special education? And what eye-opening moments have you had as a teacher?
My first degree was in therapeutic recreation. I've been volunteering with people with disabilities since I was ten years old. When I decided to go back to work after helping my husband with his business for 14 years, I knew I had to work somewhere that I felt really good about what they were doing with special education - I found that school. I started as a paraeducator. I quickly learned that while I wanted to work in the special education field, I didn't want to work with the population I went home to. Not fair to anyone. So, I got my Masters in Special Ed and certified in English and teaching students with learning disabilities. I recently just reinvented myself again and I am working with "at-risk" students — students with behavioral/emotional challenges. I find this to be the next explosion we will see in the field.
What advice do you have for other parents who are raising children on the autism spectrum?
First, always trust your gut instinct. The only decisions I regretted were the ones that didn't feel right. Experts don't know your child, they know data.
Two, know these children will bring you great joy. It will be different than the type of joy you thought you would have - but it will be joy none the less.
Three, you will meet some of the best people on this earth in your journey.