Tag: disability

“What does he have?” I am asked, usually when my adult child is squawking like an infant or when his diapers poke out above his jeans. Today I can say ‘what he has’ and know that it can be found on the internet. Even in Wikipedia: 22q13 deletion syndrome (spoken as twenty-two q one three, see Locus (genetics)) is a genetic disorder caused by deletions or rearrangements on the q terminal end (long arm) of chromosome 22. The definition goes on, but for most parents new to this information…it takes time to swallow. Proceed slowly. Once in hand, once known, there is no turning back on the New Reality that something is forever shifting away from our original hopes, plans and dreams for our family and for our child.

Before the ‘Knowing’, for me, came Denial dragging along Anger. Naively I assumed this happened elsewhere and to others. Perhaps ignorant, perhaps somewhat entitled, when my landscape shifted beneath me and our family as our child fell farther and farther behind on the developmental milestones, I hoped the delays were caused by his difficult birth and entrance into life. I hoped he would catch up. When my hopes did not manifest, I let the Anger protect me from knowing too much too soon. Anger was also the result of grief and the tremendous sense of loss I slowly acknowledged. Anger protected me from Depression, which was a period of feeling powerless to impact this outcome. The depression sunk me when my bargaining with The Fates, The Divine, with God failed to produce the change I wanted in my experience as a parent. The sweet part of the path came with Acceptance. Once I embraced our garden as bountiful, once I re-organized my definitions of success and once I learned to check in with the neighbors for assistance or to assist them in our weird world, the contentment became the joy in the journey.

The Kubler-Ross five stages of Grief match the phases I experienced as a parent new to the world of special needs. Unlike the Kubler-Ross trajectory, mine has been a spiral circling back on Denial as new limitations or complications continue to come up for our son Davis, the thirty-third child in the world to be diagnosed with The Phelan McDermid Syndrome, a deletion also known as 22q13.3. After twenty-one years alongside my son, I am no expert, just a parent familiar with a path less traveled, one I have written about for years in a manuscript called The Thirty-Third Child.

My advice to any parent new to the Labyrinth of Special Needs would be to settle in fully with each emotion, each reaction, each stage. Not to rush the process because you can’t. If you do not fully grieve the loss of your expectations, this grief will later bite you in the sweet garden of Acceptance because it is a weed left unattended. Personally I liked Denial for its protective shield when I needed it most and even Depression provided respite when I needed a break. The Guilt I could do without, but any parent will have their share of this whether their child is typical or not. I debate Guilt when I can, what do I need to own as my responsibility and what am I taking on because of the way I see others handling their own difficult paths. But it’s the bargaining that eventually empowered me because to bargain is to trust in a higher source. As nauseating as this spiral can be, my ability to trust the process provides me with the capacity to smile as we all continue along in our journey with Davis.