Without humor, I’d wouldn’t make it. Everything takes three times longer (or more) to complete, if at all; we have to learn a new language all our own; without warning, things whip across the room; and most likely at any time of the day, one can easily find some sort of food matter in my hair or hanging from one of my appendages.

I heard one mother say that if one more person told her she was lucky to have an autistic son, she’d blow her top. The day-in and day-out physical and emotional challenges are a lot. It’s not a pretty television commercial, this “special needs” thing. I mean, how many special needs kids do we see on peanut butter commercials happily spreading the stuff on a perfectly white piece of bread?

In a special needs world, most likely, the peanut butter would have ended up on my arm; the bread ripped up to pieces and thrown across the kitchen; and the spoon in some one’s hair. A sense of humor is not a nice extra to get through the tough times - like the dinner hour - it’s an absolute requirement when getting just one task finished can seem to plop me in a hole where, without a good laugh, I’d think this was all too unfair. Spending more than 1/2 a minute wondering why it seems so unfair is not in the special needs handbook. There just is no time, for the child will gaze up at us and again, ask for help, usually in a way we’d never even imagined, and send me roaring into laughter as I watch it all spin by.

In the “olden” days when pictures came to life in a dark room, we all had to guess the results. Waiting to get those photos back from the developer was like getting mini-Christmas presents. I’d wince all too often at the missed opportunities and the oh-so-many eyes that closed just as the button was clicked.

Now, I can’t get a photo off without my kids wanting to see the automatic result. So if they are doing something cute and adorable, I have to sneak it before they run towards me to see the reflection in the view finder.

Addison gets quite cross with me if I do not oblige. Often I take a picture to use it as “bait” - an offering to entice him to leave the playground peacefully so we can get home for lunch. When he sees my camera, he holds up his hands and makes a click sound. It usually works, he’ll forget a bit about the fun he’s had for the last few hours and saunter over to put his shoes on.

And I have to admit, the immediate results are wonderful to see. Plus who doesn’t like looking at a million shots of their kids? Or kittens? Or puppies?  Or……..

I don’t know. At least once a day I need to say this. It is easy to be swept away by all the information out there. And when it includes a special needs kid, it can get more than confusing. Just picking out the right car seat is confusing or what to make for dinner, baffling. Understanding drugs and surgeries and how retinas or twisted intestines takes time to absorb.

Saying “I don’t know” gives me the space to step back and dodge the bullets of information coming at me. Saying “I don’t know” opens up the airways for that information to settle after the wind has died down.

And then, with some time and maybe a chat with a friend or a little nap or a cup of tea, the information won’t be so overwhelming and I can again take another step forward.

Move to a new level. Whether I like it or not, my son has pushed me to a new level of myself. Challenges arise I never expected to part of my palette. Orthopedic doctor recommendations were for someone else; breathing specialists for the person over there; swallowing my pride for another time - another place where it’s more comfortable.

Down Syndrome has moved me into a place where I am so uncomfortable, I wriggle with annoyance. I never expected this. I assumed all would be smooth, even in my difficulties. I assumed tackling this special needs thing would begin and end every day like it had in the past -a few more appointments were a simple inconvenience.

Yet I am awed and humbled and almost slapped silly at how challenging it is to manage all this. All this special stuff. But, in the end, it is nothing. Nothing compared in what my son has to deal with in learning how to put one foot in front of another or how challenging it is to climb a ladder we all find so easy to do.

I bow my head in his presence. He’s taught me how to climb higher than I ever imagined possible. His shoes I will never be able to fill. I guess I will be blessed to follow close behind.

At least I wasn’t in my pajamas…Right there in front of my computer, my dear friend (who’ve I yet to meet) said she’d given me an award. After lugging Addison to the hospital for a blood appointment which was rescheduled for another day, and the crappy news that I had to go back on Thursday to read a needle test and fork out another hunk of cash for a taxi as the dealer says the car won’t be ready for two weeks because they have to wait for the license plates because, after all it is a developing country and who’d want to be efficient??!! Anyway…..I think I just digressed.

This beautiful thing that can happen with computers (if we don’t become addicted to emails and APPS) is that we get to know people around the world without ever having to suffer bad airline food. (And, if we want we can stay in our pajamas till the kids come home!)

Momcat is a regular reader and often gives me a lift when I need it. Check out her site and give her a boost. She’s great. And moms are great. We’re the new force to be reckoned with. This handy dandy machine will bring us together and change the world inside and out of our homes. As I dig out of the whirlwind of divorce and caring for a special needs kids, I’ve found that these messages and moments of thoughts I get from all over the world save me from the pits. More than once.

Thanks Momcat.

We have to accept help. Since the birth of my son, I’ve known that taking care of a child with special needs has to involve a community. First, of course, it comes from inside the family. After reading all those books by all the experts that tell us all the places we must go to check the list of all the “possible” deformities, maladies, or complications, it can become overwhelming, confusing, and even maddening.

A place I found especially confusing after returning from many of those appointments and asking for help, I seem to be right back in the same place. I’ve learned after asking for help, and not getting it, I’ve got to ask again. Pushing harder isn’t always what I want to do when I’m tired. But if someone doesn’t help, someone else will. Otherwise, we’re all going to break down. Managing a special needs kid is a lot. Kids are a lot. We all need help.

Each Down Syndrome case has it’s own special medical mix. And, we might have to just keep running to all those appointments, but help has to come from our community. Even a ride to an appointment or watching another child or taking the kids for a weekend so the parents can get a break can be a powerful force of healing.

Special needs kids are a gift to our society. They make us slow down and focus on love and bring unity to those who bond together to really care for someone as they struggle to survive and ultimately thrive in the world.

Down Syndrome, special needs belongs to all of us. It’s one thing to say it. It’s another to really help the process, and the parents, along.

Watching a child toddle off to school after a long battle in the hospital ranks as perhaps one of the deepest joys imaginable. And, though a two week stay in the Hospital de Niños of Costa Rica was not a place I ever wanted to be - or any hospital for that matter - it was more than worth the time spent.

My discomfort was nothing compared to the pain I saw many families going through as they sat by the beds of the children, wiping up the sweat and vomit and emptying bed pans. Though we all wished for a comfortable bed to sleep on, each mother knew that it was nothing. Nothing, for it was for their child.

Every child born in Costa Rica has the right to medical treatment. Period. No child is turned away. And as I watched each child go through their treatment for whatever ailed them, I also saw an incredible patience by the medical team to be sure no one was sent home less healthy than when they arrived. The nurses have their hands full. That’s where parents must take a part in the care. There’s just not enough money for all the benefits of a private hospital to go around.  And what seems like an eternity of sleepless nights and drugs and waiting for blood results to arrive quickly becomes a moment, a story recounted in the past.

Addison pointed at the picture of his class this morning and squealed with so much excitement, we had to keep a close eye that he wouldn’t try to jump out the window to get to his morning bus. That’s the moment the long haul turned into a flash of light and lit up a new life to come.

One of the few jungles of life in Costa Rica I’ve yet to explore is the social medical system first hand. I’ve taken people to hospitals, listen to the crowded stories of patients explain stressed, but good, care. But never had to check in. Until now.

My son has a way of taking to many worlds, so now I can thank him for this adventure. After getting a bit wheezy, he took a trip to the hospital to help loosen up a cold that is trying to cause problems. He’s doing great, but Down Syndrome gives us always an extra challenge due to the extra chromosome factor. I’ll be posting when I can and keep all updated.

I’ll be waiting out time looking at the peeling paint and wondering how anyone survives hospitals with that freezing air conditioning. I’ll remember to bring hand towels and toilet paper as it was a bit thin. I’ll wait and watch him get well with the loads of other parents and loved ones, tired but grateful the hospital is there.

One new shirt. That’s it. That’s all it took. One new shirt and the world lit up. Stepping back and looking at children, all off a sudden they’re a little more grown up.

Pants get short; cheekbones rise; and the fuzzy-bear-rattle slippers are tossed into a bag for another baby to wear.

Addison sprouted up. Not sure when. Could have been that birthday cake. Or good luck. Whatever it is, it sure looks good on him.

If the World Bank could hand out this kind of cash - whew, imagine the credit we’d have.

Quit barking you mutt! And just listen! Addison held up his hands to scold the mechanical puppy one more time as it kept barking and wagging it’s tail to the sound of his voice. Night time entertainment hadn’t been this exciting since we gave the guinea pig a bath.

Four years after the birth of my son, our family has officially moved into the geek zone. After watching a story about “geeks” being “in,” I knew I’d find a group to which I could relate.

• We go to bed early.
• America’s Funniest Videos are our favorite shows.
• We make asses of ourselves in public because some bodily fluid usually ends up smearing or smudging on something that doesn’t belong to us. W
• We tend to skip and giggle and trip uncontrollably in public places.
• Our clothes rarely match.
• I wear funny, black glasses that slip off my nose.
• I spend more time talking to my computer than humans.
• Scoring nifty oxygen hoses is a true thrill.
• I own a Johnny Mathis album.
• I sing along to that album.

These last years have proven to be tough. But without them, perhaps I wouldn’t have realized that watching my son read a bedtime story to a mechanical puppy may not rank as a fabulous night out, but it may rank as one of the greatest moments of my life which followed another great moment…and another…and another…