Meanwhile....Back in the airport

So, we are in the throngs of negotiating the waters surrounding the island known as the Preschool Program for Children with Disabilities. The very term makes me wince. I am not sure that I have really come to grips with the term "special needs" or disabilities. I'm thinking the entire thing needs a new name, like "Preschool Program for really adorable children with parent's stuck in an Amsterdam airport." Yes, it's long but makes a lot more sense.

I have spent days doing paperwork. For every question they asked, I attached a separate sheet explaining my answer. For every milestone listed, I checked "delayed." For every health problem listed, I checked "yes."

I attached 5 extra pages of data, not including more pages and a booklet on 7q11.23 duplication, and prayed someone would actually read all the data provided. (Thanks to my Dup Group buddies for helping with that!)

In the midst of doing the paperwork, I have returned to the airport and the aisle of grief. Once again I am mourning. Once again I am struggling with denial, struggling with change, struggling with wanting to have a "normal" life for my child all the while struggling with the need for professional intervention to get him where he needs to be for kindergarten. (The more I hear about kindergarten, the more worried I become.)

I was brought almost to tears one day as we played Legos in the floor for the very first time. We spent two hours building bridges, roads, and stairs for his animals and trains. I was brought to tears by the thought that our spare time was once again being whittled away. You see school won't be in place of therapy two days a week but in addition to therapy. Selfishly, I want a day each week that we can spend together as a family, and selfishly, I want a day each week where Snugglebug and I can crash, relax, and unwind. You do the math. There aren't that many days in the week or hours in the day.

I love our quiet down-times when we sit playing (a.k.a working on OT and speech homework). I have come to grips with so much of this adventure, yet just as I find bit of balance, a new ball is thrown into the mix, and I must find balance juggling even more than before. I can't even really put my emotions into words. I want things to stay the same, yet I want to embrace change. I want to accept once and for all that life for us is going to be full of challenges such as this, but it seems acceptance is outside my reach.

I'm peering at the daffodils outside the airport. I'm glad there are at least windows here, and I seem to have located a payphone to call friends and family for a shoulder to cry on and an ear to listen.

If you are clueless as to what I am referring to, I advise you to read: Amsterdam International.

The Quest for Encouragement: Are you in the airport or not?

A friend read Amsterdam International and asked what she could do or say to support and encourage those of us with neuro-atypical children (my word not hers, but about that in another post). I was so touched by her question. The simple desire to encourage me means more than any words she could ever utter.

Yet so often I don't even admit that I am in Amsterdam International, let alone admit that there are no windows to even view the tulips and windmills. When asked the age old question, "How are you?" I give the age old answer, "Fine." Besides, there is no way to answer that question when the airport feels like it is closing in on you.

So, using Dana's analogy of the airport and tulips, I have devised a coded question for friends and family to ask the parents of neuro-atypical children....

Are you in the airport or not?

You see some days you are in the airport. You might be near a window with at least a view of the tulips, but other days you might be smack-dab in the middle with no sight of an exit, a plane, or a tulip. All you see is the concession stand and its day-old sandwiches.

Then there are other days, when you escape the confines of the airport to see Amsterdam. You might not see the tulips, but you are at least breathing fresh air. But, other days, you might actually be seeing the tulips.

Each day is different. For those of us who have children with health problems, we cannot begin to explain those problems in the few minutes allowed for the "How are you answer?"

But, if we ask, "Are you in the airport or NOT?" A quick answer tells all and means the world to us moms. Just knowing that someone is interested...Just knowing that there is no judgment in how we truly feel, reminds us that even when we feel we are alone, we aren't. We have friends, who if they cannot even begin to understand what it is like to prep a two-year old for a colonoscopy, they can accept where we are and how we feel.

No matter the issue of the day or the view in Amsterdam, we just need a caring heart and sometimes someone to listen to us. We realize not everyone wants to know all the details. All we want to know is that someone cares enough to ask..."Are you in the airport or not?"

Quest for a New Word

With all due respect to those who believe there is no such thing as a normal child, I do believe there is a "normal." AND that my Snugglebug does not fit in that category.

A normal child goes to the park, Snugglebug goes to Specialists (6 to be exact).
A normal child goes on playdates, Snugglebug goes to therapy (3 hours a week to be exact).

A normal child does not have to be prodded to move forward in development. It just happens.

So, while the word normal is not the best word to use, I am at a loss for what to use to describe our situation. A Dup Group parent suggested the terms neuro-typical and neuro-atypical to describe their two different developing children, one of whom has 7q11.23 duplication and one who does not. I like the terms. They seem to fit the definition.

So, until I find a better way to describe sweet babies who need extra love, extra help, and extra supervision, I'll be using neur-atypical.

I'm open for suggestions.

Amsterdam International

The article below was written by Dana Nieder, the mother of a special needs child. This article speaks to every crevice of my heart. It is hard to explain what it is like to be a parent on this journey of life with a neuro-atypical child, but she does.

The poem below, Welcome to Holland, is written by Emily Perl Kingsley, a writer for Sesame Street and the mother of a child with Down Syndrome.

Dana uses the poem as a basis for her article, which is why I included Welcome to Holland here. Dana includes a link to the poem in her article.

I would love to hear comments from you, my readers.



--------

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 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.

-----------

Amsterdam International
Written by Dana Nieder

To fully get this post, please read (or re-read) Welcome to Holland before starting. Thanks.

In the special needs world, there is a poem (essay? whatever.) called "Welcome to Holland." It is supposed to explain what it's like to have a child with special needs. It's short and sweet.

It skips everything.

While "Welcome to Holland" has a place, I used to hate it. It skipped over all of the agony of having a child with special needs and went right to the happy ending.

The raw, painful, confusing entry into Holland was just glossed over. And considering the fact that this little poem is so often passed along to new-moms-of-kids-with-special-needs, it seems unfair to just hand them a little story about getting new guidebooks and windmills and tulips.

If I had written "Welcome to Holland", I would have included the terrible entry time. And it would sound like this:


Amsterdam International

Parents of “normal” kids who are friends with parents of kids with special needs often say things like “Wow! How do you do it? I wouldn’t be able to handle everything---you guys are amazing!” (Well, thank you very much.) But there’s no special manual, no magical positive attitude serum, no guide to embodying strength and serenity . . . people just do what they have to do. You rise to the occasion, and embrace your sense of humor (or grow a new one). You come to love your life, and it’s hard to imagine it a different way (although when you try, it may sting a little). But things weren’t always like this . . . at first, you ricocheted around the stages of grief, and it was hard to see the sun through the clouds. And forget the damn tulips or windmills. In the beginning you’re stuck in Amsterdam International Airport. And no one ever talks about how much it sucks.

You briskly walk off of the plane into the airport thinking “There-must-be-a-way-to-fix-this-please-please-don’t-make-me-have-to-stay-here-THIS-ISN’T-WHAT-I-WANTED-please-just-take-it-back”. The airport is covered with signs in Dutch that don’t help, and several well-meaning airport professionals try to calm you into realizing that you are here (oh, and since they’re shutting down the airport today, you can never leave. Never never. This is your new reality.). Their tone and smiles are reassuring, and for a moment you feel a little bit more calm . . . but the pit in your stomach doesn’t leave and a new wave of panic isn’t far off.

(Although you don’t know it yet, this will become a pattern. You will often come to a place of almost acceptance, only to quickly re-become devastated or infuriated about this goddamned unfair deviation to Holland. At first this will happen several times a day, but it will taper to several times a week, and then only occasionally.)

A flash of realization---your family and friends are waiting. Some in Italy, some back home . . . all wanting to hear about your arrival in Rome. Now what is there to say? And how do you say it? You settle on leaving an outgoing voicemail that says “We’ve arrived, the flight was fine, more news to come” because really, what else can you say? You’re not even sure what to tell yourself about Holland, let alone your loved ones.

(Although you don’t know it yet, this will become a pattern. How can you talk to people about Holland? If they sweetly offer reassurances, it’s hard to find comfort in them . . . they’ve never been to Holland, after all.


And their attempts at sympathy? While genuine, you don’t need their pity . . . their pity says “Wow, things must really suck for you” . . . and when you’re just trying to hold yourself together, that doesn’t help. When you hear someone else say that things are bad, it’s hard to maintain your denial, to keep up your everything-is-just-fine-thank-you-very-much outer shell. Pity hits too close to home, and you can’t admit to yourself how terrible it feels to be stuck in Holland, because then you will undoubtedly collapse into a pile of raw, wailing agony. So you have to deflect and hold yourself together . . . deflect and hold yourself together.)

You sneak sideways glances at your travel companion, who also was ready for Italy. You have no idea how (s)he’s handling this massive change in plans, and can’t bring yourself to ask. You think “Please, please don’t leave me here. Stay with me. We can find the right things to say to each other, I think. Maybe we can have a good life here.” But the terror of a mutual breakdown, of admitting that you’re deep in a pit of raw misery, of saying it out loud and thereby making it reality, is too strong. So you say nothing.

(Although you don’t know it yet, this may become a pattern. It will get easier with practice, but it will always be difficult to talk with your partner about your residency in Holland. Your emotions won’t often line up---you’ll be accepting things and trying to build a home just as he starts clamoring for appointments with more diplomats who may be able to “fix” it all. And then you’ll switch, you moving into anger and him into acceptance. You will be afraid of sharing your depression, because it might be contagious---how can you share all of the things you hate about Holland without worrying that you’re just showing your partner all of the reasons that he should sink into depression, too?)

And what you keep thinking but can’t bring yourself to say aloud is that you would give anything to go back in time a few months. You wish you never bought the tickets. It seems that no traveler is ever supposed to say “I wish I never even got on the plane. I just want to be back at home.” But it’s true, and it makes you feel terrible about yourself, which is just fantastic . . . a giant dose of guilt is just what a terrified lonely lost tourist needs.

Although you don’t know it yet, this is the part that will fade. After you’re ready, and get out of the airport, you will get to know Holland and you won’t regret the fact that you have traveled. Oh, you will long for Italy from time to time, and want to rage against the unfairness from time to time, but you will get past the little voice that once said “Take this back from me. I don’t want this trip at all.”

Each traveler has to find their own way out of the airport. Some people navigate through the corridors in a pretty direct path (the corridors can lead right in a row: Denial to Anger to Bargaining to Depression to Acceptance). More commonly, you shuffle and wind around . . . leaving the Depression hallway to find yourself somehow back in Anger again. You may be here for months.

But you will leave the airport. You will.

And as you learn more about Holland, and see how much it has to offer, you will grow to love it.

And it will change who you are, for the better.

© Dana Nieder 10/2010

Please feel free to forward this, blog about it, post it places, etc. My intent in writing it was to reach families in the early stages of processing having a child with special needs and to let them know that they are not alone. If you do blog about it, post it on a website, forward it, etc, please link back to this blog (or cite my name, Dana Nieder) and include my email address (uncommonfeedback@gmail.com) so that I could be contacted if anyone wants to reach out.

Also, if you blog about it or post to a website, please email me to let me know, because I think that's pretty cool :)

Thanks for reading :)
Posted by Dana at 10/05/2010 10:05:00 PM