Friday, January 26, 2007

Rethinking things - DAN!

A few posts back I wrote about the GFCF diet. This is part of the biomedical approach to treating (not curing) autism, which for a very long time Rob & I have resisted using for T. Rob has written a very good post about our day yesterday, which I will link below - there's no point in writing all of this twice!

But I will add a few other comments here. Rob is right - I really needed to hear a medical professional say to us "You did everything right." Yes, I had a RhoGam shot and the flu shot while pregnant (both probably had the dreaded thimerosol as a preservative - ugh); both were recommended if not insisted upon by our OB at the time. But I also nursed T for 15 months, got him therapies as soon as we knew something was wrong, got all the prenatal care I was supposed to and didn't take any forbidden meds...I guess I can't impress upon people enough just how hard it is NOT to feel like this is somehow my fault. I mean, I know it's not, but year after year of questionnaires asking "Did you have a healthy pregnancy?", "Describe the delivery", "Did you take any drugs during your pregnancy?", "Did you eat fish?", "Were you on any antibiotics?" start to get the impression that something you did caused this. I know the questions have to be asked. I also know that I am proud to be a Rule Follower - if a book or a medical prefessional tells me to do something, I DO IT. If they tell me not to, I DON'T. So, hearing from this doc - a DAN! (Defeat Autism Now!) doctor even - was such a relief. Not so much because I thought I caused it, but to hear her affirm what I know to be true...that was a gift.

This is going to be a long road. Years, perhaps. But we are in this because T deserves every opportunity to grow into his best potential.

One subject of conversation on the way home: jobs, career, and what to do next. We are feeling so well connected with all the services in our part of the world that if feels like we'd have to completely start over with all of this if we move - and why in the world would we want to do that? Of course we wouldn't be starting therapies over again, but we'd have to find new therapists, new schools, new doctors, establish relationships...sigh. And Rob is at the point in his doctoral degree that we really are looking toward what is next. I guess we'll have to take that as it comes.

In the meantime, I'm going to just sit and have a quiet weekend. I'm really tired.

Saturday, January 20, 2007

Holland Schmolland

I've been alerted to another writing...perhaps not as inspirational, but nonetheless honest. Much of this made me smile & nod my head in agreement.

Kids say- or sing - the darndest things

T is quite a musical little boy. It is a constant source of amazement and amusement for us to hear him hum or sing a tune – and this year he has actually begun singing words at the ends of phrases, which is really, really cute. The story I am telling today does not involve words, though – just the tune – but it was enough.

T outed one of my deep, dark secrets…my love of the TV show “Dallas.”

We were at the clinic where he receives speech and occupational therapy once a week. His therapists were working on his cutting skills, having him use scissors to cut across a sheet of paper. (This took weeks and weeks of work. He could snip once, move to another spot and snip again, but cutting several times in a row while moving the scissors forward was a hugely difficult task to learn.)

T will sometimes use humming as an escape maneuver – he’ll hum if he isn’t particularly interested in a task. This was one of those occasions.

So, he stops looking at the paper & scissors, goes to his happy “I’m not here” place, and starts humming. He’s humming the Dallas theme song. Perfectly in tune, in rhythm, everything. The therapists don’t realize it at first, but slowly, as the tune unfolds (and as I drop my head into my hands in embarrassment and complete amazement), they look at me and one asks, “Is that the theme to Dallas???”

I burst into embarrassed but hearty laughter. Yes, I admit, I watch the old Dallas reruns on the SoapNet channel during the day when T has some downtime and I’m cleaning up from lunch.

So I’m thinking of all the great stories I’ve heard of kids telling people about conversations their parents had about them, or telling embarrassing things about their mom or dad in public places…and I’m thinking that even though Thomas wasn’t verbal at that point, he did it to me, too! Kids say – or sing – the darndest things.

Friday, January 19, 2007

Welcome to Holland

This is a new favorite poem of mine.

byEmily 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.

Tuesday, January 09, 2007


Just had to share some recent pictures...

Not today

So I didn't have the same luck today as I had yesterday - but that's really okay. It was typical, though - I took him to the bathroom, thinking he might have to go. Peed, no indication he had to do more. I really had to pee though, so I took my turn...and in those few seconds, he had pooped in his training pants. Such is the life. Never fear - I am still giddy from yesterday's triumph and I rest assured knowing that he has pooped in the toilet.

I know one kid (goes to the same therapy clinic in town) who is 10 and autistic, and still will not poop in the toilet. His mom says that he'll walk into the bathroom, tell her he has to go, but absolutely, postively will not go in the toilet - completely freaks him out to try. So she puts a diaper on her 10 year old, he poops in the diaper, and she disposes of it. This happens - this is real. So Hooray T! I'll catch you again soon.

Monday, January 08, 2007

He did it!!!

Whoopie! I almost entitled this entry "Poop, there it is...poop, there it is" but I decided against it. But I'm so darn excited I can hardly stand myself. Today, I had the great luck of asking T if he needed to go potty at the precise moment he was preparing to do more...only I didn't know it. I took him to the bathroom, and when he was standing in front of the toilet, he kept shoving my hand down toward the Cottonelle wipes (what would I do without those wonderful flushable things?) Well, I'll spare the details, but a moment later I put the training seat down, sat him on it - he didn't even have the DVD player because we weren't in that bathroom - and lo and behold, HE POOPED in the toilet!!!!!

Anyone seen the movie "Parenthood"? There is a fantastic scene toward the end of the movie when Steve Martin's son finally catches the baseball and therefore wins the game for the team. Steve Martin (the coach of the team) does the most celebratory and exstatic dance on the field, even throwing himself on the ground and pounding his fists and kicking the ground in joy. That could have been me!

Okay, so next on the potty training to-do list: repeat this success. Then get him to tell me he needs to go. Ah, but today, I celebrate this remarkable achievement! Progress is such a lovely thing!!!

Monday, January 01, 2007

Cracker Barrel on New Years Day

Happy 2007! I have a feeling that not everyone at the Cracker Barrel today was too happy. But before I relate this story, I'll say that I'm surprisingly not guilt-ridden by what transpired at lunch. This is good, because I have a remarkable way for feeling bad about things I don't need to.

So, a group of friends met us at Cracker Barrel at noon to celebrate the New Year. I'll admit that the size of the crowd in the store waiting for a table in the restaurant caught me by surprise. And we hesitated when told that it would be a 45 minute wait in this crowded store. But we decided to give it a try, since there is a great selection of toys and music boxes and things to entertain T (and the adults, too!) T & I sat by the toys and played and sang with the jack-in-the-boxes and die cast cars, and even made a few successful trips to the potty. At one point, a nice man was playing around with some spinning/light-up toys that played high-pitched Christmas songs. T saw this and was fascinated, and this nice man showed him the toy and handed it to him. We exchanged some smiles - I'm always thankful for pleasant and compassionate people wherever I find them. Well, this toy really allowed us to stay and eat lunch - he played with it the whole rest of the time we waited for the table, and even while waiting for the food to arrive. Yes, the tunes emitting from this little spinning toy was loud enough to be heard over the loud din of all the hustle & bustle in this busy restaurant, but it wasn't too terribly loud in our opinion - or in our friends' opinions either.

When we are out in public, all my attention is riveted on T. Is he happy? Occupied? Safe? Not having a tantrum or getting too agitatated or overwhelmed? I am not looking around to see if other people are irritated or annoyed or giving me or him disapproving looks. I figure I'm taking care of that the best I can by focusing on his needs, and if others are effected by an occasional scream or protest, then so be it. (This is one of the struggles with having a "normal" looking child with a disability - people sometimes do not have a compassionate response toward a kid who just looks like he's acting out or being difficult. It's times like these that I fantisize about getting a t-shirt for T that says "I'm autistic.")

So this is why I didn't see this coming. A young woman, perhaps in her early 20s, was suddenly beside me at our table saying "Is there anyway he could stop playing with that toy? EVERYONE is getting really annoyed around here." To which I responded very honestly, "Well...we'll try. He has autism and this toy is the only thing that is keeping him happy right now." "Oh...okay" she replied, not looking too satified, and sat back down at a table for two with her boyfriend, I assume. Rob & I went to work, and eventually, after several distractions and a few LOUD shrieks in protest, we got the toy away quietly. But we weren't long for the restaurant anyway - we had already been there about 90 minutes and it was loud & crowded for anyone, let alone our little guy. So we finished up and got on our way - no quicker than we would have otherwise. It was awkward that our friends were there for that, but they really leaped to our defense when we were outside - and even wanted to pummel anyone who gave us a sideways glance on the way out.

1) We have a right to go out to a restaurant as a family. If he were acting out, physically disruptive or unable to sit at a table for the duration of the meal, that would be different.
2) College-aged 20-somethings (esp those who might have been celebrating too much the night before) might not be the most compassionate people we encounter.
3) We may have pushed it by deciding to stay at this busy restaurant on this busy day. We may make a different decision next time.
4) T should have some opportunities to experience these situations. The other option is that we just keep him at home or in quiet situations, which is good some of the time, but if we do that all the time, when will he learn how to manage different settings?
5) The staff at Cracker Barrel were all very nice and helpful. Other parents seem to be a very understanding lot too. And then there are always wonderful gems of men and women who are just nice because they are nice people. I concentrate on these folks, and do my best to let go of everyone else.

So all in all, I was very proud of our little guy. And despite the little unpleasantness at lunch, he did really well - and Rob & I made a great team, too. I have no idea how people do this on their own. We're all off to a good start to our New Year - ready to face it all.