Friday, May 29, 2009

Found this on the web

and had to share. Enjoy!

Holland Schmolland
by Laura Kreuger Crawford

If you have a special needs child, which I do, and if you troll the Internet for information, which I have done, you will come across a certain inspirational analogy. It goes like this:

Imagine that you are planning a trip to Italy. You read all the latest travel books, you consult with friends about what to pack, and you develop an elaborate itinerary for your glorious trip. The day arrives.

You board the plane and settle in with your in-flight magazine, dreaming of trattorias, gondola rides, and gelato. However when the plane lands you discover, much to your surprise, you are not in Italy -- you are in Holland. You are greatly dismayed at this abrupt and unexpected change in plans.

You rant and rave to the travel agency, but it does no good. You are stuck. After awhile, you tire of fighting and begin to look at what Holland has to offer. You notice the beautiful tulips, the kindly people in the wooden shoes, the french fries with mayonnaise, and you think, "This isn't exactly what I had planned, but it's not so bad. It's just different."

Having a child with special needs is supposed to be like this -- not any worse than having a typical child -- just different.

When I read this my son was almost 3, completely non-verbal and was hitting me over 100 times a day. While I appreciated the intention of the story, I couldn't help but think, "Are they kidding? We're not in some peaceful country dotted with windmills. We are in a country under siege -- dodging bombs, boarding overloaded helicopters, bribing officials -- all the while thinking, "What happened to our beautiful life?"

That was five years ago.

My son is now 8 and though we have come to accept that he will always have autism, we no longer feel like citizens of a battle-torn nation. With the help of countless dedicated therapists and teachers, biological interventions, and an enormously supportive family, my son has become a fun-loving, affectionate boy with many endearing qualities and skills. In the process we've created . . . well . . . our own country, with its own unique traditions and customs.

It's not a war zone, but it's still not Holland. Let's call it Schmolland. In Schmolland, it's perfectly customary to lick walls, rub cold pieces of metal across your mouth and line up all your toys end-to-end. You can show affection by giving a "pointy chin." A "pointy chin" is when you act like you are going to hug someone and just when you are really close, you jam your chin into the other person's shoulder. For the person giving the "pointy chin" this feels really good, for the receiver, not so much -- but you get used to it.

For citizens of Schmolland, it is quite normal to repeat lines from videos to express emotion. If you are sad, you can look downcast and say, "Oh, Pongo." When mad or anxious, you might shout, "Snow can't stop me!" or "Duchess, kittens, come on!" Sometimes, "And now our feature presentation" says it all.

In Schmolland, there's not a lot to do, so our citizens find amusement wherever they can. Bouncing on the couch for hours, methodically pulling feathers out of down pillows, and laughing hysterically in bed at 4:00 a.m. are all traditional Schmutch pastimes.

The hard part of living in our country is dealing with people from other countries. We try to assimilate ourselves and mimic their customs, but we aren't always successful. It's perfectly understandable that an 8 year-old from Schmolland would steal a train from a toddler at the Thomas the Tank Engine Train Table at Barnes and Noble. But this is clearly not understandable or acceptable in other countries, and so we must drag our 8 year-old out of the store kicking and screaming, all the customers looking on with stark, pitying stares. But we ignore these looks and focus on the exit sign because we are a proud people.

Where we live it is not surprising when an 8 year-old boy reaches for the fleshy part of a woman's upper torso and says, "Do we touch boodoo?" We simply say, "No, we do not touch boodoo," and go on about our business. It's a bit more startling in other countries, however, and can cause all sorts of cross-cultural misunderstandings.

And, though most foreigners can get a drop of water on their pants and still carry on, this is intolerable to certain citizens in Schmolland, who insist that the pants must come off no matter where they are and regardless of whether another pair of pants is present.

Other families who have special needs children are familiar and comforting to us, yet are still separate entities. Together we make up a federation of countries, kind of like Scandinavia. Like a person from Denmark talking to a person from Norway (or in our case, someone from Schmenmark talking to someone from Schmorway.), we share enough similarities in our language and customs to understand each other, but conversations inevitably highlight the diversity of our traditions. "My child eats paper. Yesterday he ate a whole video box." "My daughter only eats four foods, all of them white." "We finally had to lock up the VCR because my child was obsessed with the rewind button." "My son wants to blow on everyone."

There is one thing we all agree on. We are a growing population. Ten years ago, 1 in 10,000 children had autism. Today the rate is approximately 1 in 250. Something is dreadfully wrong. Though the causes of the increase are still being hotly debated, a number of parents and professionals believe genetic predisposition has collided with too many environmental insults -- toxins, chemicals, antibiotics, vaccines -- to create immunological chaos in the nervous system of developing children. One medical journalist speculated these children are the proverbial "canary in the coal mine", here to alert us to the growing dangers in our environment.

While this is certainly not a view shared by all in the autism community, it feels true to me.

I hope that researchers discover the magic bullet we all so desperately crave. And I will never stop investigating new treatments and therapies that might help my son. But more and more my priorities are shifting from what "could be" to "what is." I look around this country my family has created, with all its unique customs, and it feels like home. For us, any time spent "nation building" is time well spent.

-- The End --

Tuesday, May 26, 2009

Just a quick PSA (public service anouncement)

The last bit is just in case you don't text like me and have a bitch of a time trying to figure out some of the short forms. So not text savay, but all well, live and learn. Or forget in my case. Anyway.......

I forgot to mention a little while ago what happened with Kenny and a local Harveys. We had been out and running around (as usual) on a Sat. Both of us such smart and caring parents (note sarcasm) had thought we had decided on Wendy's for lunch, cause you know just how healthy that is, right? So while on our way we passed a Harvey's and as a last minute decision decided to go there instead. One fast food place is the same as all the others right?

Not in Kenny's mind. No way, no how was he happy with that decision. The tantrum started before we had even parked. And us being the 'on the ball' parents we are, kept going with our wonderful decision. So out of the van we dragged him. Over to the door. Tried to open the door and get him in. Nope. He was having no part of that. Managed to strong arm him into the door. Nope. So picture if you will, a tall 4 yr old boy being carried by both parents while he is screaming, biting, kicking, grabbing Mommy's glasses and trying to throw them into Harvey's. Wonderful huh. But wait, it doesn't end there. Now picture Mommy and Daddy trying to have a conversation with each other on what they want to eat. Nope, couldn't hear over the screaming 4 yr old. So Mommy takes him back out to the van to hopefully settle him down.

Of course we are now the wonderful entertainment for the lucky patrons of Harvey's. And trust me some were really taking to their roles well.

So finally after 10 minutes or so, he calms down enough that I can again talk to him. We discuss how to behave inside so both Mommy and Kenny can enjoy their meals. Get him in, sitting down, hand him his food, only to have another instant meltdown because Daddy got chicken nuggets instead of a cheeseburger. So nuggets go flying (who knew chickens could fly), french fries are scattered and Mommy is in tears. Of course the crowd is again taking in the show. Most with complete looks of disgust on their faces. Oh and I can't forget the comments. You know, the "what a spoiled brat" ones. Or the "shut the damn kid up" (which are my favourite by the way) ones.

Now about the public service anouncement (or PSA). If you happen to see something similiar happening in a fast food, kid friendly environment, don't sit there and pass judgement. Please try to be a little understanding that we are doing our best to calm him down. Hey even better, make things a little easier and actually pick something up and hand it back instead of just watching in disgust. Or move out of the way when Mommy is trying to carry the tantruming child out of the restaurant, instead of standing watching with your jaw dragging on the floor, blocking the only bloody route out.

Is that too damn much to ask? Really? Wow, who knew.

Monday, May 18, 2009

Kitchen is almost done.

Things have been very busy here at our household. Our long weekend was spent painting the kitchen. This was after replacing our old mouldy countertop and putting up tile for the side splashes. Next is strapping the ceiling and drywalling in the dining room and the living room to forever get rid of the cracks that haunt us. Then painting the living room and repainting where needed in the dining room.

I must say that I must be the only parent dreading summer vacation. My little dude man thrives on routine and structure and guess what, I'm the complete opposite. He will still be going up to Arthur twice per week, can't miss out on some of his therapy's but he loves, LOVES Mrs Thomas and Sandy (his support teacher). Christmas break threw him off to the point of behaviour issues and that was only for two weeks! Can you imagine 2 months!!?!?!?!?!?!?

Now does anyone know of a magic washer/dryer that will not only wash and dry clothes but will collect, sort, clean, dry, fold and put away all the laundry? Anyone? Anyone? No? Darn, guess I gotta run then. Yuck.

About Me

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Ontario, Canada
Married Mom of 3. Just trying to survive with the many challenges.