I want to start my post off with a poem that I have embraced for as long as I have been a special education teacher. It has a special place in my heart and reminds me of the struggles parents of these children face.
Welcome to Holland
I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this…
When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
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.
The important thing is that they haven’t taken you to some horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.
So you must go out and buy a new guidebook. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place. It’s slower paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy, and they’re all bragging about what a wonderful time they had there. And for the rest of your life you will say, “Yes, that’s where I was supposed to go. That’s what I had planned.”
The pain of that will never, ever, go away, because the loss of that dream is a very significant loss.
But if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.
Written by Emily Perl Kingsley
Now- take a moment to really think about those words. Think about the parents who embrace their pregnancy- read all of the books- imagine the wonderful milestones that come with being a new parent. They imagine first words and first steps- seeing their child on their first day of school- taking the training wheels off and having to doctor that first boo-boo from a fall on the concrete. In their wildest imagination they do not consider therapy appointments, medical procedures… they do not look forward to fitting their child with AFOs or finding the best therapists… that is not what their preparation was all about. So- when their beautiful baby is born- and they are faced with the fact that the plane didn’t land in Italy… faced with the fact that their child is not that perfect little bundle of joy that their friend’s are enjoying… when they may even have to face their own child’s mortality… how do they handle it. First, they have to grieve. They grieve that perfect child that was in their minds. That child who will hit or exceed all of the milestones- be the next Picasso, or cure cancer. That imaginary child that they planned on for months, heck years- maybe even their entire lives. Face it- as kids when we play house no one has a handicapped child… we arent learning to tube feed- we are learning to give our babies mashed carrots while making the airplane noise… we are helping our babies take their first toddling steps- not teaching them to move their wheelchairs. that is just hard and fast reality. We dont imagine having to place our precious bundles into Special Education classes… in our minds they are scholars- doctors, lawyers… not a child that at 6 still cannot speak, or has to have their diaper changed at 12.
So- they grieve. They go through the stages of grief as if their child died- because, in essence- that child of their imagination did… what are the stages of grief? Denial, anger, bargaining, depression and acceptance… and not always in that order- and not singularly, either.
When the doctor comes in with that diagnosis- that news you do not want to hear- you deny. THEY ARE WRONG.. my baby is perfect. Even faced with a low birthweight- a child in an incubator fighting for their lives… they are wrong. My child WILL grow out of this and be perfectly fine…
anger- WHY GOD? Why would you do this to us? Why do this to my innocent baby? To our family? Why would you dangle the thought of a perfect child in front of me and then snatch it all away? You get angry at your friends- those who DID have the perfect child. Why should they have what you have longed for? Later, you get angry with the education system and all of those tests that show your child is not going to make it in a regular classroom… you even get angry with your child at times for not being who you wanted them to be…
Bargaining- God, if you just cure my child- I will be the best Christian ever- I will stop swearing- I will tithe 20%…
depression- all you want to do is crawl into bed and cover your head… pull the covers up and just die… sadness overwhelms you.
Finally comes acceptance. This is a LONG time coming for some. I know parents who have Elementary Aged children who STILL havent really accepted the fact that their child will never be able to do the things their same aged peers are doing.
They keep going back to denial- back to bargaining… if I just study with him 2 hours a night- he will get it… back to anger- HOW DARE you label my child- HOW DARE you say he needs to be in special education…. believe it or not- some NEVER EVER make it to acceptance. NEVER.
I knew a mom who had a profoundly mentally handicapped child- no walking, no talking- he was basically a 3 month old in a 16 year old body. He could inconsistently hit a button to say hello= but only about 50% of the time. She wanted him to be a Walmart Greeter… I appreciated her high expectations for her child- but when we looked at the reality- the logistics- looked at how someone would have to be with him at all times- how we were not even sure that he understood the switch plate… was she in denial? Did she want to believe he knew more than he did? Was she wrong for her high expectations, or were we wrong for pointing them out to her?
I have been a teacher of special needs children for over 15 years. It is my passion- my calling- and I have gone on to adopt two special needs children of my own. For a while, I didnt get it. I didnt understand how these parents could not accept their children for who they were- for the blessings they brought to the family. ….Then it hit me when reading the Welcome TO Holland poem for the millionth time… I PLANNED MY TRIP TO HOLLAND. I had been to Italy- twice- and now I planned a trip to Holland- twice. I knew the language- knew the scenery- knew what I was expecting… I KNEW I was adopting special needs children and knew the possible outcomes. I wasnt surprised when the plane didnt land in Italy- I knew exactly where we were going.
This led me to another realization that i think a lot of people- the parents included- dont understand …and that is guilt…. yes- think about that one for a minute. Guilt. Imagine that you are that parent- expecting the birth of that child- and something happens. Doesn’t matter what it is- an infection- preterm labor- a rupture- diabetes… or even something no one can explain. As a human, we are already prone to guilt… so here we have this baby growing inside us- and when he is born there is something wrong… as humans- we are going to blame ourselves. What did I do WRONG? Did I overdo it? Should I have drank more water? Was I too old to have a baby? Should I have exercised more? Not taken aspirin…. WHATEVER it is, I guarantee you that the parents of special needs children have stopped to question what it was that they did wrong that resulted in this affliction on their child.
Even children who are born “normal” then suffer from injuries in the birth canal- or who have strokes- seizures… God forbid an illness that causes this… I am their parent- I should have been able to prevent this from happening. I should have been able to see that they were sick sooner- I should have known something was wrong- I should have woken up sooner- I should have… should have… what if… what if……….
So- when we deal with parents of special needs children- we often shake our heads at their living in denial- we shake our heads at their levels of expectations- their hard headidness… but we need to take a step back and walk in their shoes… how would you handle the path that God has laid out before them?
As I said- i planned my trip to Holland- but they were headed to Italy instead. So- we, as educators, friends, family members- people in the checkout lines- we need to help them to learn to embrace the gift that God has given them. We need to help them learn about Holland- learn the language- see the beauty. No, it is not Italy and never will be- but Holland is breathtaking in it’s own right- breathtakingly different. I would never trade my Holland adventures for a trip to Italy- as I would never trade my special needs children for even the most perfect child. The tantrums, the therapists, the hospital stays- the stress… they are my loves- regardless of their disabilities. I will never regret landing in the wrong place- never regret the struggles- because God knew I needed to land in Holland, and it has made me a better person as a result.
So, the next time you encounter that parent- the one with the tired, sad eyes- the one who still has no idea how to make it in Holland- remind them there are windmills- and their beauty will take your breath away.