Are you new to a diagnosis of your child? This lesson is probably the hardest to accept because the raw emotions of your child are involved. Do yourself a favor right from the start of this special life and get used to the ever-changing and revolving doors of staff, helpers, professionals, care providers, sitters, doctors, nurses that will come into your world and then quit. Those special people in your life that you shed tears with and shared personal life events with will eventually change careers. They may move to other positions or leave town. Be prepared as your family will feel a loss. It's the nature of the beast, and as the saying goes... life happens.
Every person in your child's life is meaningful. Your time was invested in that provider. As a parent, it is difficult when you see your child get emotionally attached to a person. Then that trusted "friend" leaves or moves on from their position, and now you and your child will feel a sense of loss.
Recently we experienced this with my daughter Allie's music therapist. For two years, consistently, every Monday at 3:30, Ms. Ashley would visit to play and teach music therapy together. In those two years, I tweaked strategies and sometimes gave Ashely advice so she would be successful in teaching Allie. Ashley, at one point, witnessed a seizure that my daughter had. Emotions ran high that afternoon, and real-life lessons of seizures were taught to Ms. Ashley in that hour of "Music Therapy."
We forged on and months had passed practicing music happily. Then one fall afternoon Ashley pulled me aside after a session, "Ms. Brown, can I talk to you for a moment?" My heart sank; I knew this was not going to be a fun conversation as I sensed she was serious.
"I'm taking a new position at a nursing home in Centennial, where I'm going to be their new Activities Director."
There it was - the two-week notice. It came, and now we start the process again.
The weight of responsibility now falls onto the parents to prepare their child for when care providers quit. We now have to take the time to explain the person's last day will be next Monday at 3:30.
I deliver my news to Allie after Ashely's last music lesson.
"You will not see Ms. Ashley your music teacher again my darling. I am so sorry." I said sadley.
"Okay mom, why? Did she move away?"
"No, she will be working in the next city a few miles away from here with adults teaching them music. Won't that be nice for them?" I lightly explain in a way she can comprehend in a positive light.
It is harder on the parent or care provider than the child in some cases. I am one of the lucky ones where my child just moves on to the next one. But so many are not as fortunate as I. However, the sting is still present in my heart.
Please comment if you experience this. I ask you to offer advise for those of us that go through this transition. What do you do? What do you tell your kids? How do you move past?
Joni Brown writes about her life raising her daughter that lives with PCDH-19 epilepsy, autism, anxiety and OCD.