Of Paperwork and Doctors

Doctors require a great deal of paperwork. I try to download what I can and fill it out at home before getting to the office just to save time and because there are usually enough pages to give a person a hand-cramp before they are finished.

But, there is always that chance that you walk into a doctor you have seen a several times in the last year, and after they photocopy your insurance card and driver's license again, they hand you a stack of papers to fill out that look incredibly similar to the "new patient forms" you filled out prior to the first visit. Only these forms are to update your record. I think what they don't want to tell you is that someone accidentally spilled their coffee on your file, and they can't read your address in order to send you the bill. So, they have you fill out all three or four pages while you wait and before you are allowed to see the doctor, so they will have your billing address...and a LOT of other stuff.

Is all that information really necessary? I understand needing the social security number and address of the patient and the person responsible for the bill. They need those to file with insurance, and in case you renig on the bill, and they file it on your credit. But, they also want the social security numbers, addresses, cell phone and work phone of every other person in your life. Is that really necessary?

And, they want your driver's license number and every piece of information printed on your insurance card. Didn't they just copy both of those? Maybe, it's like an open book test to check your eye sight.

But I can understand the information from the insurance card. What if the same person spilled coffee on the photocopy of the insurance card? They have a back-up of your handwritten insurance card.

Some questions make sense. It makes sense that they need to know if anyone had certain illnesses in your family. But, is it really necessary to know how many pets you have or what kind they are? And do you need four lines to answer those questions? I suppose if you were going to the vet, but not for a gastroenterologist.

Some questions apply to adults such as workplace and occupation. But, when you are filling it out for a child what do you put?

Workplace: Home
Work Address: See above address listed three times
Occupation: Playing...and chasing the three cats, riding the two dogs, antagonizing the guinea pig, and trashing mom's house faster than she can clean it.

And, how many emergency contacts does one person need? And they want the person's name, address, cell phone, and work phone. For this reason, I am having my husband's name, address, cell phone, and work phone tattooed on my arm where they check my pulse. And, should I have a heart attack, and they are checking the records for my contact info, it will read, "check pulse."
It just saves everyone time.

But, they also want "an emergency contact who does not live in the home and you are not related to." Really?

Well, since this is all about being thorough:

If I trip and break a bone, call my lawyer...name, address, phone number.
If I have an allergic reaction, call my doctor (that's not you)......name, address, phone number.
If I become locked in the bathroom and the door is jammed, call my handyman....
If I am accosted by ghosts, call Jason and Grant of Ghosthunters...
If I am accosted by evil spirits, call a priest, any priest with a REALLY big cross...
If I am robbed at gun point, or at any point for that matter, call the police....

I am nothing, if not thorough.

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

Play Ball!!

It's a great day to be a Texas Rangers fan!

Last night, I sat in utter astonishment as the team that I have routed for my entire life won the American League Championship Series. This nn contrast to their win for the American League Division Series where I was jumping up and down, dancing, and doing this internal squeal because the rest of my family was sound asleep. For the ALCS win, I was elated to the point of not really believing it. It took all of five minutes for it to set in, and then, I jumped in my car, drove fifteen minutes to the nearest big city to purchase one of the last ALCS Championship t-shirts. At 10:35 p.m., they were sold out. I was lucky to get what I did. Granted, I could wait till Tuesday when they have a million shirts, but for someone who has attended Ranger games, listened to them on the radio and watched them on TV, and memorized the roster year after year, I had to show my respect by a late-night drive to purchase a t-shirt.

My husband has been giving me grief about my division championship t-shirts. I bought two! I wear one, then wash it the next day, while wearing the second. On the off chance that I don't have time to do laundry that day, I also bought a Hamilton jersey t-shirt to wear in between the division championship t-shirts. Alas, I have thoroughly enjoyed seeing my team do so well this season.

All of this is my dad's fault. Yes, I blame him for my baseball enthusiasm. It started on a beautiful Sunday afternoon when he rounded up my sisters and I and took us into the backyard. He presented each of us with these large, uncomfortable, plastic gloves and showed us this large, bright orange softball. While it may have been a softball, the game he taught us was clearly referred to as baseball.

That day he taught us the fundamentals of a game that we would all fall in love with. It was the beginning of many a Sunday afternoon spent playing our four-person version of baseball.

Near the beginning of baseball season, we would rent every baseball movie the library had in stock. Our favorite was The Sandlot. It's still a favorite to this day. Then, baseball season would begin. We didn't watch every single game on tv, but we watched quite a few. We attended at least one game a season, a tradition that I continued through college and until I married and moved to far from the stadium to make attendance easy.

We are passing on the tradition to our own Snugglebug. We introduced him to baseball while on vacation this summer via The Little League World Series! Another family staple around here is the LLWS. We don't miss it!

Each night in our hotel room, we would snuggle down under the covers and watch the boys play ball. Even two-year old Snugglebug watched all six innings. Who would have ever guessed that a little one would sit still that long?

When we got home, we purchased him a t-ball set and started our lessons of baseball. When the Rangers' games start, he gets out his t-ball set and bats when they bat. If he isn't batting, he is sitting next to his daddy, watching the game. We let him stay up a little past his bedtime, so he can watch part of the game with us.

For you football fans, you shouldn't worry. We are great believers in a well-rounded education and his daddy is teaching him the ins and outs of football and even tosses a small, plastic football with him in the backyard. But, this post is about baseball and the glory of what is OCTOBER and the WORLD SERIES!!

LET'S GO RANGERS! LET'S GO! LET'S GO RANGERS! LET'S GO!

Book Review: Out Live Your Life by Max Lucado

If you enjoy Max Lucado books, then you will enjoy this one. In his traditional, easy to read style, Lucado inspires the reader to move forward in his or her Christian life. While the book is not full of fascinating ideas to out live your life, it is a gentle reminder that God places moments within each day when we can make a difference in someone else's life. Lucado sites lots of scripture and compares today's church to the early church in the book of Acts. He reminds the reader of what we are supposed to do as a church and as Christians and encourages us to do just that.

This book is not overwhelming. Unlike, A Hole in Our Gospel, it does not leave you in tears with each chapter and when you close the book you are not spurred to pack your bags and become a missionary. But, it does remind us that we have a great job to share God's love and grace with others.

As with most of Lucado's books, this one also comes as a small group or individual Bible study. I read this book in three days and wouldn't necessarily say it would make a great Bible study.

Hanging Out at the Pumpkin Patch

Another fall tradition is a visit to a pumpkin patch. Thus far we have not visited the same one twice which adds to the fun. There are so many different pumpkin patches in the area. This year we went to the Dallas Arboretum. It is a bit of a drive for us and in Dallas traffic no less. But, we made it and it was well worth the trip.

Snugglebug enjoyed the pumpkins immensely. He has been learning the word pumpkin in sign language and by the time we went to the pumpkin patch, he was signing it quite well. He was almost chanting in sign language, "pumpkin, pumpkin, pumpkin."

The hay maze was a favorite of Snugglebug. He ran through the maze and then climbed on the hay bales. This was his first attempt at climbin


Climbing on the hay bales is a big deal for this texture sensitive child. The first time he touched the hay he drew back his hands and rubbed them on his shirt. The second time he tried just touching the hay with his knuckles. Still not good. He gave up and continued running through the maze but the desire to climb overcame his texture issues, and he succeeded in climbing the hay bale. That was only the beginning. There wasn't a hay bale that he didn't climb after that.




There were hay bales everywhere with pumpkins of all sizes piled on them and around them. The kids could climb all over the hay and the pumpkins. No rules about looking but not touching.
My favorite pic of the day. He chose this pose himself.
"I'll have pumpkin, please." Sitting in the chair was his idea, but he wanted the chair the girl in pink was sitting in.


My sweet baby boy and I.