Welcome To Holland

This was written by Emily Perl Kingsley in 1987. There is no better way to describe the experience of becoming the parent to a child with special needs:

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.

4 Things My Mommy Imagination Ran Wild With

The boy had a sleepover at grandma’s last night and I almost feel like a new woman! For such a tiny person, he sure does take up a lot of space in the bed. Yes, he very often sleeps in our bed. When I was pregnant, and even after he was already here, I swore that I would not be one of those parents who would allow their child to crawl into bed with them, no matter what, but real-life has shown me that sometimes no matter how sure you are in your mind that you will be one way, your kid decides otherwise for you.

Here are 4 Big Ideas I had going into this baby thing that didn’t quite turn out how I imagined:

1.  He would have the most comprehensive & complete baby milestone book on the face of the planet – I imagined myself writing down the date and time, right down to the very second, that my boy hit every milestone. (I briefly considered using latitude and longitude coordinates to precisely identify the location the "first" took place but scrapped that idea when I remembered I have no clue how to figure that out.) His first smile, the first time he sit up on his own, the first projectile poop (That one was on daddy. Yes, on daddy. Twice. In the same day.) 

I envisioned this cutely decorated scrap book filled with snapshots and notes that we could look back on together when he was grown. Currently, he is 20 months old and I have one picture marked “first time drinking from a juice box” that I just tagged a few days ago in my pictures folder on my laptop. Don’t get me wrong, I have a bunch of photos and videos of him doing things – you know, important things like batting at a fluff on the carpet with his back to the camera – saved on my hard drive but they are in random order with no tags or captions. There’s a picture frame on his wall with a cutout for each month and a big one in the center for the 1^st birthday picture. I managed to put in photos that I guessed were months 1-10 just before his 1^st birthday but am still missing months 11 and 12. Maybe I can get around to it before his 2^nd birthday.

2.  Each person would sleep in their own bed – I know there are some moms (and dads, too) who think the best place for the parents & children to sleep is in one big, comfy bed. I do not subscribe to that theory. Unfortunately, my son does. They call it a “family bed”; I call it “I’d rather sleep on the couch because it’s more comfortable than my own cramped bed”. Up until he was about 11 months old all we would have to do is lay him down in his crib for naps and bed time and he would happily soothe himself to sleep. Out of nowhere, the script was flipped. I can almost hear the sound of a record scratching in my head when I think of the 360 he made. It began with him crying to be picked up. Ok, we decided, we’ll let him ‘cry it out’. But he would cry until he threw up. Eventually, he would skip the whole crying part and stick his hand down his throat to induce vomiting. This kid cuts right to the chase. We moved his crib to the foot of our bed, hoping being close to us would be good enough but no, he’d rather be scrunched up in bed with mommy & daddy. Wait, who am I kidding? The only ones scrunched up are mommy & daddy – baby is sprawled out like a king while we try not to fall off the edge of the mattress he's relegated us to nightly!

3. He would sleep through the night after he turned 1 – 

I really figured that by 13 or 14 months old, he’d be sleeping through the night. My zombie eyes and foggy brain prove otherwise. Up until about 16 months he was still taking 3 bottles a night! I’d like to say that I trained him to not need any milk through the night but truthfully he just grew out of it himself. What he does still do is wake up and insist on climbing into bed with us. You see, we transfer him to his crib after he falls asleep on our bed. But when he wakes and realizes he’s been moved, he screams and cries until he can get back into our bed. We must have a magical mattress because there’ve been times where I’ve woken to find him asleep, upside down at my feet. He’d climbed out of his crib onto our bed but didn’t quite make it to the top! He’s so sleepy, all he needs is to be in our bed, even if it is by daddy’s stinky feet (my feet do not stink).

4. We would eat veggies and healthy food every day, all day – Yeah, right. When I was a kid, my

mom had to tell me that every meat I was presented with was chicken, I wouldn’t eat anything dark, all the crust had to be removed from my bread & no vegetables or fruit (aside from bananas) would pass my lips. As I got older, I was known as the “Chef Boyardee Girl” because that was practically all I would eat. Then I went through a mashed potatoes-only phase. You could say I was a slightly picky eater. Turns out the apple doesn’t fall too far from the tree. I’ve read articles that recommend camouflaging veggies in foods kids love naturally. So being the crafty mom I am, I try to give him mac & cheese with broccoli mixed into it. It’s kind of amusing to watch him take a bite, chew it up a bit then let it dribble out of his mouth, down his chin and onto his belly, all the while eyeballing me with that “Go ahead. Test me” look. I’ve occasionally managed to trick him if he’s really hungry but usually you’ll find me trudging back into the kitchen to get him real mac n’ cheese.

Yep, things rarely turn out as how we imagine them. Especially when there’s a kid with his own ideas involved!

What are some things that you expected that didn’t quite turn out the way you thought it would?

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The Flu and You - 5 Tips On Staying Healthy

Flu season is upon us! OK, maybe I’m a little late with my announcement but it’s not too late to start thinking about it. According to the CDC (Center for Disease Control) the season can begin as early as October and end as late as May. There’s no way to tell when it will start, what viruses will be spreading or how long the epidemic will last. But we can take steps to curb and hopefully stop the virus from spreading within our own households.

Those of us who are immune-compromised or have children with disabilities are more susceptible to catching a virus so we must be extra cautious. The CDC did a study on the 2009 H1N1 flu outbreak and it was found that a higher number of kids with neurological conditions died from this epidemic than kids without. In fact, 68% of those deaths had an underlying medical condition; 64% of that group had a neurologic disorder! I am not trying to create a panic but I do think it’s extremely important to be educated and informed. Here are 5 tips on how you can keep your home as healthy as possible that you may or may not have heard before:

1. WASH YOUR HANDS!

Yes, the simplest things sometimes are the most important things. In my home, the main entrance is through the kitchen and as soon as we walk in the door, we wash our hands. No matter where we’ve just come from – the grocery store, a relative’s home, school, work – first we wash our hands. Anybody who comes over, I ask the same from them or offer antiseptic hand sanitizer that I keep right next to the soap. I’ve had a couple people say, “Oh, I washed my hands just before I left my house”. Really? That’s great. And after you washed them you touched your door knobs, car keys, car door & interior, and God knows what else...So yeah, please either wash or disinfect them now that you’ve made through my threshold, thanks!

2. USE YOUR ELBOW!

Well, actually the inside of your elbow a.k.a. the crook of your arm.  When you cough or sneeze, covering your mouth and nose with your hand is fine if you’re going to wash it right away but chances are you’re not. What you’re probably going to do is touch your phone, computer mouse, remote, drawer handle, door knob or shake someone’s hand. Then guess what? You’ve passed your germs on to someone else. I’ve never seen anybody open a door or change the channel with the bend in their arm. If you do, please take a picture and share that; I’d love to see it.

3. WIPE! WIPE! WIPE!

There have been studies that show remote controls are the germiest items in hotel rooms. I’m willing to bet your remote controls at home have never been cleaned. Neither have your cell phones, home phones or computer mouse. I take disinfectant wipes (Lysol makes them but there are other no frills brands that have the same properties and work just as well) and clean everything. I just go room to room and wipe down the things that we touch the most throughout the day. The electronic items I mentioned above; light switches; door knobs; cabinet handles; drawer pulls; computer key boards; video game controls. I’ve gotten into such a frenzy that before I realized it, the cats had been sanitized, too. They hated it but they did look pretty funny with their fur all stuck together like that. Ah, good times.

4. QUARANTINE!

After we found out my son doesn’t have half of his immune system I bought face masks so that if anybody in our immediate family was sick, we could protect him from our germs. We try to stay away from the others for the first couple of days until the antibiotics kick in. And if someone from the outside world is sick, they get locked out! Even the slightest hint of a possible cold is enough to block access to our home. Sorry, we love you, but ya gots to go!

5. VACCINATE!

This is controversial. I know there are many people who feel this will only get you sick, whether it be with the flu, Autism or other neurological diseases. Let me just give you the facts, as per the CDC, then you can make up your own mind.

Who should be vaccinated? Everyone, but especially people at high risk like children over 6 months; those with certain medical conditions that make their immune systems weaker like those with asthma, diabetes and chronic lung disease; pregnant women; and people over 65. Also, those of us who care for people who fall into this high risk category should be vaccinated.

When should we vaccinate? As soon as the vaccines become available so that a flu epidemic doesn’t have a chance to grow. It takes about two weeks for the vaccine to kick in so waiting until the virus is in full effect to get the vaccine is not ideal. You should get it when it becomes available so you’re protected at the right time.

Where do I get the vaccine? If you are being followed by a regular physician then that is where you should go. If you don’t have a doctor you can go to http://flushot.healthmap.org/ to find a location by you. There are also links on the main page to information on the different types of vaccines available.

Make sure that whoever is giving you the vaccine knows your medical history. For instance, the nasal mist vaccine is not safe for the groups I mentioned above. People with immune deficiencies probably wouldn’t be good candidates for any type of vaccine, either. I’m not doctor so please, PLEASE speak to a medical professional about all your medical history before making your final decision. You can find more about the flu and vaccines http://www.cdc.gov/flu/.