My son was diagnosed with autism when he was 5 and had just started kindergarten. Two of the hardest realizations for me as a parent of a child with autism were 1) admitting I didn’t know how to parent my child, and 2) that I was handing over to complete strangers the precious time I had to parent my child.
Before the diagnosis, my husband and I had been able to set up our alternating teaching schedules, so we relied very little on organized child care. We did this both for philosophical and financial reasons. We were very lucky to have this privilege and delighted in walking our son to and from preschool when he was 4.
It was in preschool that both we and his teachers first began to recognize that he needed testing. A move to another state further delayed the process. The move made the transition from pre- to post-diagnosis life extra difficult. We had left our old support network behind, something we sorely needed post-diagnosis in our new location. Although we had been looking forward to making new friends and seeing a new state, sightseeing and building up a new network were no longer viable options. Any free time we had was devoted to medical appointments, treatment plans and hours of therapy. Any other time was spent sleeping or staring at the wall. The world we had known receded. It was like being a soccer mom, but without the social aspects.
Yet in all of this, I felt and still feel like I have farmed out my parenting to others. The precious mother-son relationship I had imagined ended when he was 5. It had been unraveling slowly the year before without me realizing it. And of course, the start of school can be disruptive, but also bring positive change and new independence when we parents need to let our children fly. For the three years after my son started kindergarten, I devoted myself to his treatment, gathering the various members of his medical, school and therapy teams to ensure that they were in communication with each other.
In the fourth year, I ran out of energy and operated on auto-pilot. My relationship with my son fell apart completely. I no longer knew him because he was with so many others during the day at school and in therapy, and then our morning and evening routines were often contentious and stressful. On top of that, as a neurotypical parent, I tried so hard to understand his world, but utterly failed. I felt like I was parenting someone so completely other than me. My husband and I were spending any available time on coordinating homework with the therapy and social skills options for our son. Finding the energy to locate an available therapist who worked with parents of kids with disabilities was too much of a specialized order.
This is not a complaint. It was just reality. In the end, it is my son’s psychologist who has been bringing me back to life through an excellent parent training curriculum. In it, I had to admit to myself and to others that I had no idea how to parent a child with autism and that everything that I thought I knew no longer worked. In it, I had to realize that my relationship with my son was working at cross purposes to his treatment, despite my hardest work and best efforts. A new autism parenting group in the area has also been incredibly valuable. I now have a support resource for me once a month.
It has taken us five years to truly align the multiple aspects of my son’s life, and they are currently in a delicate balance that continually threatens to destabilize on a weekly basis. His decision to add a martial arts class has worked wonders in its very structured yet highly social atmosphere. Because he is now older, my son is becoming more self-aware and self-reflective, which has marked a turning point in his ability to balance his own neurodiversity with a neurotypical world.
I write these lines not out of self-pity, but rather in recognition of how these challenging parental emotions can have an adverse effect on the success of our children. We need to continue to see that the progress of a child with autism is as much about the child as it is about the parents who are creating the foundation for the child’s success. This is true of any child, but even more so for children with disabilities.
Parents need the support of a community that shares and understands their needs. They need access to meaningful parent-centered training. This training should not just consist of an explanation of what is being done in therapy or how they can conduct the therapy at home. These are absolutely important, but parents also need access to a trained expert who will walk them through a holistic assessment of family support and stressors. This person should be accessible to troubleshoot behavior management challenges over the course of their child’s development.
Just as every child with autism is different, every parent of a child with autism has different challenges. Parents, don’t settle for less. Seek out this kind of care and demand it. Ask until you find it even if it takes your last bit of energy, because in my experience, it will create new energy reserves. It truly takes a village full of kindness, patience and care. And if others won’t do it, we must join as parents and create it for ourselves.