Autism Awareness: An Onlooker’s Perspective of the Parent’s Journey

photo4 (2)Because I am a parent, I automatically have respect for the emotional, physical, and spiritual energy it takes to raise any child.  All parents who care or who try to do the right thing have my respect, because I know that just dealing with life’s normal stressors can make for a rocky journey. I am in particular “awe” of parents with kids on the autism spectrum or with other potential lifelong disabilities.   Their challenges are far greater than any I have faced as a parent.

I felt compelled to talk about parents as part of Autism Awareness month, because they have been the greatest force behind improving the understanding and care of their child(ren).  These are people that have pushed me and my colleagues to always be striving to know more, be more, and do more for these children and their families.   Complacency is just not an option.    After well over a decade  (well, almost two decades really) of working with children and their parents,  I have made a few observations about these unstoppable warriors.

  1. Parents react very differently to the diagnosis or potential diagnosis, as well as to the treatment journey.  Some parents are embarrassed or angry, some feel guilty, many are hopeful, and many are overwhelmed.   Some seem to cycle through all of these emotions at one point or another.   During the course of a child’s treatment, parents react differently toward us as professionals.   If they are going through a hard time, they may convey anger or blame. If their child is successful, they show appreciation and gratitude.   There is no way we can completely understand what they are going through, but we have a great deal of empathy for them and work hard to ride the waves with them.
  2. We hear stories of isolation.  If a parent isn’t part of a community (and sometimes even if they are), they report feeling isolated.  If your child screams or bites other children when he or she is overwhelmed, he/she is often not a party favorite.  We also hear that finding a babysitter can be difficult, because it can be hard to find someone who you can trust with your child during a meltdown or someone who will be vigilant enough to keep your wandering child safe.
  3. We watch parents find comfort in others who are fighting the same battles.  I watch moms who ordinarily may have never been a part of each others lives, but have bonded given their special circumstances.  They cheer each other on, pray for each other, cry with each other and share words of encouragement.  They share resources and experiences.  We are delighted when we see friendships bloom in the waiting room of our office.
  4. Watching parents progress in their understanding of the disorder and acceptance of their child’s challenges is almost as rewarding as watching the child make progress.  It seems that after a while, many are either relieved that their child will likely live a fairly typical life, or they have accepted their child’s challenges and delight in small markers of progress.  Some situations are particularly tough and these parents remain in a state of hypervigilance for many, many years.
  5. We notice over time that  societal norms have less influence over parents’ emotions as they grow in their understanding of their child.  Parents at this level of acceptance seem to have a realization that they care much less about what others think of them, as parents, or of their child’s actions or behaviors. They are much less embarrassed or upset by their child’s perceived “unusual” behaviors in public and they seem more sure that the autism was not their fault.  They seem to know that if anybody does blame them, it is out of ignorance, not truth.
  6. I feel this underlying sense of relief and quiet joy,  when I realize that a parent is slowly moving away from a life in which autism is all-consuming to a somewhat “typical” life that includes autism. These parents start doing things for themselves again or participating in sibling activities that bring them joy.  My assumption is  that initially it has to be all about autism. Autism has invaded their lives and their families and they are in a battle to fight it off. They do more than I would think is humanly possible and they fight with all of their strength. It’s not that I see them stop fighting, but more that they reach a satisfying level of success.  It is not as all-consuming, because they see their hard work and advocacy for their child paying off.  They may reach a comfort level for an extended period of time with their child’s placement in educational and therapeutic settings, and can rest before the next big battle may need to be waged.

Over the years there have been so many parents whom we have grown to respect and admire.  They have taught us so much about perseverance and strength.  Thank you for sharing the joy and pain of your journey with us.