Holland?

I was thinking of that packet lately. Our Autism Information packet we got from the doctor last year was overwhelming but one of the first things that I found in it/read has stuck with me through this entire first year. It is a poem called "Welcome to Holland".  I think it does a great job of describing the feelings of parents who discover their child has special needs.

It was written by an author Emily Perl Kingsley who joined the Sesame Street team in 1970 and has been writing for the show ever since. Kingsley has written over 20 children's books, hundreds of Sesame songs, and two Sesame home video releases (Elmo Learns to Share and Elmo Says BOO!).  She has won 12 Emmys and 9 nominations through her work with Sesame Street, three EDIs (Equality, Dignity, Independence Award) and a Grand EDI from Easter Seals, and an award from the National Theatre of the Deaf.  She has a son with special needs and as she explained in an interview I read – this poem sort of wrote itself when she was counseling families of other special needs children.

In 2004, Will Livingston wrote a song loosely based on the story, also titled "Welcome to Holland". You can click the link at the end of this post to play his song.

The hardest part for me is not that I can’t find the beauty in “Holland”.  We watch many of our family and friends enjoy “Italy" and the most difficult part for me is we were supposed to go to "Italy" too, but we are not. You will understand after you read the poem.

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

©1987 by Emily Perl Kingsley. All rights reserved

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 guide books 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 a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. 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....and 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."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very 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.

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Peace & Acceptance

One year….

You knew the possibility. You knew the reason you were there and what could be coming, but in the back of your mind and in the deepest crevice of your heart you still hang on to the glimmer of hope that your instincts are off…that you are over-reacting…that you are over-protective…that maybe, just maybe you are wrong. Then they look at you with the most sincere compassionate smile. The kind of smile that says “I think you know this and I don’t want to be the one that tells you but…”…But she doesn’t say anything. The look says it all. Instead she hands you a packet of information in a gold envelope that is about 2-3 inches think and tells you if you have any questions to call and that you will need to bring him in for a follow up appointment to create a plan. Nothing else is said in the room. You all just ...know.

After check out we walked in to the parking lot, Dan holding MJ’s hand and me carrying the packet trying to hold myself together. Neither of us had even looked at that packet yet. We didn’t want to. As far as MJ was concerned that was just another regular doctor appt so the doctor could “see how strong he was growing” and “see if there is anything she could help him/us with”.  And as far as MJ was concerned that is all we wanted him to know.

The car was pretty quiet on the way home. I think Dan and I were afraid if we tried to speak we would burst into uncontrollable tears. As Dan looked at me we briefly made eye contact, then both glanced at the packet weighing on my lap. What in the world could possibly be in a packet this big? Could there really be that much to know? We both had a feeling we had no idea what we were in for but one thing we knew for sure. We weren’t ready for this. How could any parent be ready for this?

I still feel the pain as if the diagnosis were yesterday. We have lived for a year with MJ’s diagnosis of Autism (diagnosed in September2012). We have been through a year of blood tests, medical procedures, MRI’s, supplements, medical evaluations, meltdowns, therapy appointments 3-5 times a week, school evaluations, IEP meetings (Individualize Education Plan), MJ’s eating disorder, ADHD, insomnia, night terrors, people staring, people judging, people distancing themselves because they don’t understand. It….never….stops.

We love our son more than anything in the world. He is so special and unique. But we don’t know if he will ever do some of the things that a healthy kid would grow up to do. Due to his OCD, and lack of patience and judgment he may never drive. His lack of emotional connection and relationship skills may stop him from ever being married or having a family of his own. He may never play sports because he doesn’t know what it means to collaborate. Many people will never appreciate his ability to memorize, ask a million questions due to his inquisitive nature, or identify the make and model of just about every car by the body style.  

I am not trying to sell my son short or limit his abilities. Anything is possible. But when you are living this life daily you learn the best thing to do is prepare yourself for the worst while hoping for the best. The older he gets the more different he will be – the more he will stand out. I try to remind myself that he doesn’t know what he is missing – that he doesn’t know any different. All the while as his parents we know, we see the limitations, the teasing, the isolation, the judging, and it kills us with pain.

This past year we have done everything we can to get what MJ needs – but it will always be a struggle. Kids with Autism go through phases and often regress in one area while advancing in another. It is a vicious cycle. Try to balance that while you are managing the needs of his little brother who has his own delays in development.

For a year I have tried…but just cannot bring myself to celebrate/appreciate this “journey”. Are there special things about my son that he gets from his Autism? Absolutely there are some cool things…like the way he can memorize, the way he can hold an adult conversation and can follow your logic. I love the way he thirsts for knowledge and has a passion for science. But I will not now, nor do I think I can ever be a parent that wouldn’t “change” my son. I would give anything in the world to take the curse of Autism away from him.

We have lived for a year with MJ’s diagnosis of Autism. I still feel that pain. Now it stings even more since MJ’s younger brother JR was diagnosed with his own neurological conditions including speech apraxia and risk of Autism (as of August 2013). Another dagger to our heart.

We understand God gives you struggles to refine you, bring you closer to Him, and show His glory. But in order to grow from what He gives (or allows) you to go through there has to be acceptance. We are sad, we are frustrated, we are angry with God right now. It has been a year and I have never reached acceptance of Autism in our family, and I often still grieve every day. The daily struggles are intense. Our hearts ache for our boys and the pain is often un-bearable. Watching your children go through these struggles and pain is like a knife in your heart.  

But while we are angry, we know we need to run to Him. While we are sad and frustrated, and hurt, and even mad – we know God is still the answer.

It’s a long road ahead that has just doubled in burden. Would you pray with us that God gives us His peace and acceptance? It is a long road ahead and we need to start somewhere.