Thursday, October 18, 2007

Tuesday, October 16, 2007

Holland (Not Italy)

This is an article written by Emily Perl Kingsley, describing the experience of parenting a special needs child. She uses simple but evocative phrasing and tries to capture the essence of the parental journey. This particular article has been circulating for a while, so no doubt many of you have read this before, but I think it's worth a review before I offer an additional viewpoint:

Parenting a Special Needs Child
By Emily Perl Kingsley


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 guidebooks and make your wonderful plans: the Coliseum, Michelangelo's 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 guidebooks. 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 many never be free to enjoy the very special, the very lovely things about Holland.

*******
While I appreciated the sentiments expressed, this essay still left me a bit frustrated because I was not, in fact, seeing any tulips (except the ones ripped out of the neighbor's flowerbeds while my son said, "flower, flower"), but was seeing a lot of spinning in circles, garbled phrases in an alien language, and screaming in public if we tried to put a winter coat on our son. There are some joys in the different pace we have, but here's another response that I think also expresses the challenges of parenting a special needs child (pulled off another blog but with her name clearly showing authorship):

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 --

Consider Your Words

One interesting observation my husband and I have had with my son is that he will only respond in the desired way to certain phrases, but a similar phrase has no effect whatsoever. It's like we haven't even talked to him, he keeps doing whatever he's currently engaged in ~ whether that's hand flapping, coloring, eating, or whatever. We also have to be extremely specific sometimes, as issuing vague or general directions don't always work either.

My parents came to visit for a couple of days last week, and they know that A is not supposed to be up close to the television if it's on. We always say "get back" or "back up".

My dad was trying to say, "Move," but wasn't being specific enough. Mom mentioned that we had to tell A exactly what we wanted him to do, so dad tried "Move son, move away from the TV. Stay away from the TV," and then got frustrated because A didn't even act like he'd heard him. It took saying "get back" for him to instantly turn and sit on the couch. That blew my dad's mind; he's still not entirely sure what to do with A, or how to play with him. I get the sense that my dad is a little uncomfortable and a little overwhelmed sometimes. But then, due to being stationed overseas, he and mom have only seen A twice since he was diagnosed, and only a couple of times before that. In four years. I know that will just take some time on my dad's part to get used to little things like using the "magic phrase", whatever that is, or trying a variety of phrases to get compliance.

This morning, when my son came in and jumped on me in bed, I asked him which cereal he wanted today. I asked him to choose Kix or Cheerios, and he repeated the phrase. I said, "No, sweetie, I mean which one do you want to eat? Choose one or the other." I forgot and didn't use the normal phrase, and he wasn't getting it. He looked blankly at me, totally lost, then finally asked, "um, what? want....pick one?" I said, "yes, pick one." Then he promptly said, "OK, I pick Cheerios." We had the right phrasing.

It's a strange dance, one that keeps me mentally on my toes. I have to think about what I'm asking him to do and choose the words he will respond to. Z and I have started combining similar phrases, saying them at the same request so A will get that they mean the same thing. Like, the TV thing we noticed with my dad. Now I'll tell A to move away, get back, stay away all at the same time, and when he complies I thank him for moving away, getting back from the TV.

It takes a little extra energy, all the time, but it is so worth it to see how he starts making those connections.

Friday, October 12, 2007

Delay

Delay. That little word that strikes annoyance and trepidation into the hearts of holiday travelers at airports nationwide (will I make the connecting flight?) has now traipsed, unwelcomed, into our affairs in the H-- household.

As of Wednesday, we are not moving until further notice; at this point, it may be after Christmas ~ or even later.

Due to falling market prices, and rising interest rates, our mortgage bank that had all our paperwork and pre-approved us, appraised and inspected the house, etc, decided not to sign that all-important final piece of paper "at this time". I didn't realize I had such a visceral reaction to those simple words "at this time", delivered in a lofty, breezy manner. Kind of the same way most people deliver information about the weather in Cancun when they aren't going there and no one they know is there. It's mildly interesting, but doesn't really affect you, so it doesn't matter much to the speaker.

Bottom line is, it's their money, so they can do whatever they want with it. My first impulse was to suggest a place they could store it (*ahem*) but figured it's better not to burn bridges. Our adjustor has us on file, and when things settle down in the area, we may very well be fine in just a few months.

We're just waiting on the right timing; apparently this isn't it after all. The owner is still holding our contract and holding the house for us, because she said she knows that we're supposed to get it.

So, we wait. (Quit praying for patience, whoever is doing it!)

Tuesday, October 9, 2007

Snippets

Things are overall going well. Quickie updates on a few things:

As I pack up more of our things into boxes, A has started stimming a whole lot more often and for longer periods, because his routine has been disrupted (even how the room is arranged is a routine to him, so if we change the room around it screws him up for a few days). His Occupational Therapist suggested a few more vigorous activities for him to refocus a bit. This means a lot of jumping and running in the house and outside over the next few weeks, but I can always use the extra exercise.

Speaking of exercise, I haven't been able to do any for the last two weeks due to an injury to the tendons on the inside of my lower leg. I'd been going out five or six days a week for some time now, until this. All I know is that I was running (and doing quite well for an out-of-shape lady, making a mile in just under 9 minutes one day, the second mile took me almost 12 though) and then I felt a burny tearing sensation, and that was all she wrote. Yes, I stretched first (always), I get that question a lot. I can walk fairly normally, although stairs have been a challenge. By the end of the week, we'll give it a whirl with some walking to see how it does; I think I'll wait on running again until next week. I managed to wear heels to church on Sunday, so I definitely think I'm nearly mended.

K has discovered she can not only strip out of her own clothing, but she can put on mommy's stuff. Unfortunately, she has a penchant for mommy's unmentionables and her shoes, so we've had some REALLY interesting combinations and subsequent photos. Which will not be posted, even though they really are quite hilarious, sorry. I think my favorite is the one where she's wearing my bottoms as a unitard (under the legs in the right place, but the sides are up over her shoulders). Oh, the photos we have to show her future intended. Heh.

The house....well....we have had several appointments as far as requirements for closing go, and they have gone well. The only small thing niggling at me is we don't have that all important piece of paper from our mortgage company yet. We were pre-approved, and received all the disclosure statements from the backer on Saturday, but we don't actually have that piece of paper in our possession just yet. And we are supposed to close on the 23rd.....that is being backed up to at least the 31st I think.

Plus, we still have to give 30 days notice here in the place we are currently renting. Wisely, Z has not done so yet. These houses maintain quite the lengthy waiting list, and if we give notice, we absolutely have to get out in the allotted time regardless of whether we already have a place to live or not, there are no extensions given. This means we are going to have nearly a month's overlap to pay rent in two places, instead of 7 days. Eschk.

What are those John Lennon lyrics? "Life is what happens to you while you're busy making other plans?", from .... oh, shoot. Beautiful Boy? I have a brain fart and can't remember if that's the title or not, but that's part of the words. "Beautiful, beautiful, beautiful, beautiful boy...."

*sigh*

Happy Tuesday!

Thursday, October 4, 2007

Normalcy

We are getting tidbits of "normalcy" with A lately. For starters, A is all boy. Despite the communication barriers, there are apparently some things that transcend all barriers. This includes an appreciation of the opposite sex.

My son is in love with Alicia Keys. Yes, the singer. Everywhere he sees her, he has to stop and watch, whether we're out in a store or at home watching TV. He actually gets mad if we keep walking or turn the channel to something else. She was on Sesame Street this morning, and K walked up to the TV to dance and sing along, and A got very irate and pushed her out of the way. I don't advocate pushing, of course, but it was interesting to see him out of sorts because he was watching a chick. A beautiful one, granted, but still. He's not even four! ;)
***
Yesterday, he walked up to me with the DVD case to Milo and Otis. He smiled, said, "Cat!" I said, "Yes, that is a cat. What else is there?" A promptly said, "Dog. I want to watch foofie." "You want to watch this movie?" "Yeah" "Ok, you had a really good day at school today, so we can watch it." A then grabbed my arm, saying, "Come on! Come on!" and pulled me over to the DVD player.

He also cracked his head on the table, and informed me that "It hurts." I don't think he's ever told me anything hurt before, so this is a big deal. That will help tremendously when he's sick, so he can tell us if his head or tummy hurts.

Each day gives us a new tidbit. For those moms struggling with potty training, here's our situation: A has pooped in the potty three times for us this week, but won't pee. That's backwards from how it usually goes (I understand most kids will pee but won't poop when they're potty training), but I'll take it. It's a lot easier to change a pee-filled training pant than it is the other!

You know, there was a time in the past when I wouldn't be quite so frank, but one purpose of this blog is to describe our challenges and our successes, and this is a big challenge right now. We are desperately trying to get him trained because he's so big, it's getting hard to find pants to fit him. As it is, the 4T-5T sized pull-ups are extremely snug (even though he's not 4 until November). The sooner we can wear "big boy underwear" the better. And cheaper. Goodnites actually fit him well, but they are an expensive way to go when that's your sole comfortable "upholstery" source. We've had to put him in generic pull-ups during the day, even though they aren't fitting so well, just for cost efficiency.

A is doing well in school, although we do have a brand new teacher, fresh out of college this year. Things aren't quite as smooth as last year, but I'm certain that is simply due to her lack of experience. No amount of training and classroom time can ever replace real live actual field experience, and that can only come with time. Frustrating to read some of her questions in the communication book, but she'll get that much needed experience some day.

Another area that he is actually showing some initiative in is getting food when he's hungry. The bad thing is, he doesn't ask, and leaves the refrigerator open, drops eggs on the floor, and chews through the plastic cheese wrappers, or pulls a chair over to the pantry and eats half of a large container of raisins. He only does this while I'm in the bathroom, or changing his sister's diaper, etc. (otherwise occupied) and he is FAST. I have been scolding him, telling him to ask first, and then mommy will let him get something, but it's not connecting. I really think he waits until I'm sidetracked before he goes for stuff because he knows he's not supposed to get into it. Today he REALLY got into trouble, because he ate through most of two pieces of cheese (still in the wrapper), pulled the extra pancakes out of the bag and crumbled them everywhere, and left the refrigerator door open while I was standing on the back porch so the dog can go do his business. That doesn't take so long, so he was MOVING to get all that accomplished before I came back in. He didn't ask, again.

I am having difficulty getting through to him that he's not in trouble for getting his own snacks, but he's in trouble for not asking first and getting into things he doesn't need to.