Accepting Your Child's Diagnosis: Are we Going to Holland or Beirut?
When your child gets diagnosed with something like ADHD, Autism, Asperger's Syndrome, or some combination of acronyms, some kind and gentle soul may send you a comforting message about acceptance. I knew I had made the leagues of becoming a "special" parent when I got the forward in my e-mail box about going to Holland.
"Welcome to Holland" is a very sweet and inspirational piece written by a parent of a special needs child back in 1987. The author is Emily Perl Kingsley and you can read the entire Welcome to Holland piece here. This essay is given by many organizations to parents of newly diagnosed children having special needs.
Welcome to Holland uses the analogy of expecting and planning for a trip to Italy but somehow you find that your plane takes a detour to Holland instead. This is supposed to represent how, much like expecting a trip to Italy, we parents plan on raising a typically developing child. But instead we take a detour to "Holland" which is supposed to represent our experience of parenting a child having special needs.
Here is an excerpt from the Holland piece:
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
_"Holland??" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay._
When I first read this piece, I cried. The message was pure, simple and straightforward. We didn't expect this. But here we are so we need to stop mourning the parenting experience we had expected and begin to embrace our new journey. But over time, a curious thing happened. Whereas once I was touched by this piece of writing, in time I was almost repulsed by it. The difficulties and reality of raising a child having significant challenges began to wear on my ability to be inspired by this sweet story of acceptance. Holland? Um, not quite.
I was not the only one to feel this aversion to what was becoming considered by some, a clichÃ©d response given to all parents of children with special needs regardless of the level or severity of their child's disability. One of my friends, who was also in the parenting trenches with her child, showed me an alternative essay about acceptance called "Welcome to Beirut" written by Susan F. Rzucidlo. The author is the parent of a child with autism. And when I began reading her words, I thought to myself, "She gets it." She gets it in a way that nobody else can except a parent or caregiver of a child who has significant challenges.
Here an excerpt of this darker version of acceptance:
There you are in Beirut, dropped in the middle of a war. You don't know the language and you don't know what is going on. Bombs are dropping "Life long diagnosis" and "Neurologically impaired". Bullets whiz by "refrigerator mother" " A good smack is all HE needs to straighten up". Your adrenaline races as the clock ticks away your child's chances for "recovery". You sure as heck didn't sign up for this and want out NOW! God has over estimated your abilities.
This is no sweet story about a minor adjustment of expectations. This was a validation that the experience of parenting a child having special needs can feel like you have been dropped into a battle for which you are totally unprepared. It acknowledges for me, that acceptance is sometimes a hard earned battle. It can be an incredibly long journey where you are not sure if you will make it out with your soul intact.
Although some might not like the intensity of this piece, it brings to light how hard it can be to accept our child's diagnosis and this new way of life. The author maintains that there is good to be found in even the most difficult of parenting experiences. She concludes by sharing some of the silver linings to this experience of raising a child with many challenges:
But, there are lulls in wars, times when the bullets aren't flying and bombs aren't dropping. Flowers are seen and picked. Life long friendships are forged. You share and odd kinship with people from all walks of life. Good times are had, and because we know how bad the bad times are, the good times are even better. Life is good but your life in never normal again, but hey, what fun is normal.
Nowadays when I read either Welcome to Holland or Welcome to Beirut, I find myself crying at both stories of acceptance. The first plays to my romantic and idealized version of acceptance. The second is a raw and gut wrenching acknowledgement that this experience will never be easy. But regardless of which mood I am in, acceptance is something I will need to figure out on my own terms and in my own time. Nobody can tell you how to do it. But isn't it lucky for us that we have a variety of guides to help us.
Holland or Beirut? Depends on the day and what type of mood I am in at the time. How about you?
How do you view acceptance and which story can you relate to more? Let us hear your thoughts. We always love to hear from our members.