Autism's Night Before Christmas

I came across this poem through an on-line support group in the King County area for parents of kids with Autism. I felt that it embodied pretty much all the challenges and joys of raising a child with Autism. It's the most heart-breaking thing to watch your child struggle with the simplest tasks but it also gives you the most overwhelming joy to witness (and maybe help a little) his success and achievements...even if they are small ones. As this year comes to an end, I can say that although Autism was not welcomed in our family, we're all better because of its arrival. We're all a little more patient, a little more tolerant, a little more understanding and a whole lot more compassionate after the "boot camp" we have gone through preparing for this life-long battle. We did have an awesome Christmas holiday and now it's on to the new year and to all its new challenges and rewards. BRING IT ON 2009, the De Armas are ready to roll!

The Night Before Christmas, from the world of autism

A Walk in My Shoes

C. Waeltermann, 2007

Twas the Night Before Christmas

And all through the house

The creatures were stirring

Yes, even the mouse

We tried melatonin

And gave a hot bath

But the holiday jitters

They always distract

The children were finally

All nestled in bed

When nightmares of terror

Ran through my OWN head

Did I get the right gift

The right color

And style

Would there be a tantrum

Or even, maybe, a smile?

Our relatives come

But they don't understand

The pleasure he gets

Just from flapping his hands.

"He needs discipline," they say

"Just a well-needed smack,

You must learn to parent.."

And on goes the attack

We smile and nod

Because we know deep inside

The argument is moot

Let them all take a side

We know what it's like

To live with the spectrum

The struggles and triumphs

Achievements, regressions….

But what they don't know

And what they don't see

Is the joy that we feel

Over simplicity

He said "hello"

He ate something green!

He told his first lie!

He did not cause a scene!

He peed on the potty

Who cares if he's ten,

He stopped saying the same thing

Again and again!

Others don't realize

Just how we can cope

How we bravely hang on

At the end of our rope

But what they don't see

Is the joy we can't hide

When our children with autism

Make the tiniest stride

We may look at others

Without the problems we face

With jealousy, hatred

Or even distaste,

But what they don't know

Nor sometimes do we

Is that children with autism

Bring simplicity.

We don't get excited

Over expensive things

We jump for joy

With the progress work brings

Children with autism

Try hard every day

That they make us proud

More than words can say.

They work even harder

Than you or I

To achieve something small

To reach a star in the sky

So to those who don't get it

Or can't get a clue

Take a walk in my shoes

And I'll assure you…

That even 10 minutes

Into the walk

You'll look at me

With respect, even shock.

You will realize

What it is I go through

And the next time you judge

I can assure you

That you won't say a thing

You'll be quiet and learn,

Like the years that I did

When the tables were turned

Source: http://health.groups.yahoo.com/group/AutismKing/message/19489

A New Experience: Christmas at Home

I haven't been away from home, per say, that many times...More like "never." When I say "home" I am not referring to a geographical location, since becoming an unwilling immigrant with my family, twenty years plus ago, left me without a place to call home early in life. What I'm referring to here is to the virtual haven my parents created for me and my siblings - no matter where we were, it was HOME, as long as we were together. Even after I got married and left my parents house, the tight unity of our support system was always there, to keep me safe, to keep me secure, to keep me grounded. After moving away from Miami last year, I always had that feeling of being "incomplete" and a sense of not quite belonging, until last night. I found myself last night making plans for Christmas Eve dinner and asking my daughter, Rebecca, which traditional holiday dish (Nicaraguan or Cuban, or both!) she would prefer to eat tonight. My Cuban husband had already asked for my mom's chicken and pork holiday stuffing - Nicaraguan, no less! - Surprisingly enough, Rebecca did not have a favorite; as a matter of fact she told me she did not remember any specific dish at all. I was shocked, but not as shocked as to find out how little I knew my almost teenage daughter! Eating with family, immediate and extended, during the holidays is a must for us Latins, so in Christmas, we always ate at my parent's, then at the in-law's and then made the rounds to see as many relatives as we could in one night. Even when we hosted Christmas at our house, probably twice or so, the food was brought in by our parents, siblings, cousins, relatives and friends (no complaints from me there) !!! Now, after eating almost a dozen of those big family dinners, my oldest kid could not remember what food she ate - What's worse, she told me that everything in her life before the move is slowly becoming a big blur. I know that any psychologist would say that Rebecca's defense mechanism was kicking in to help her cope with the trauma of such a big move and part of it might be true. One thing is for sure, this move has been difficult for all of us, but it has also provided some positive opportunities for us to improve our family relationship. I feel that Raci and I have been given a chance to create our own "haven" for our kids. Don't get me wrong, having the strong back up of a Latin family IS awesome but this new "set-up" has empowered us to build our own "haven" for our kids. I'm making sure that Rebecca and the boys DO remember what we eat, when we eat it and WHY we eat it. They will remember because I am taking the time to share our traditions with them, to involve them and most of all to enjoy them - just like our parents did before.  After this chapter in our lives is over, I know the five of us will be at "home" wherever we are, as long as we remain together.

Speaking of memories, here is my favorite singer, singing my favorite Christmas song:

The "Miser Brothers" and Many More!

We have been snowed in for many days now (five and counting) and although we bought chains for the van, the previous experiences trying to drive on the snow/ice have been too frightening to try it again - I'll wait until the snow melts a little to venture out in the streets. Because of the snow and the snow and let's not forget, THE SNOW, we have been forced to spend hours and hours at home and after a while you start wondering what to do, besides eating, of course! The kids played outside in the snow for the first few days but when the temperatures dropped below 20F I did not let them play outside anymore - sorry, I am still afraid of the bad colds of last year that ended up turning into pneumonia! Hopefully, the temperatures will get higher as of tomorrow and the kids will be able to play in the snow, AGAIN. To say the least, we have played everything, from board games to Wii games to pretend play but my favorite part has been to watch Christmas movies with the kids. We have watched the classics and the new ones and I even tried to force "White Christmas" on them...that didn't fly but it was worth the try! After a few activities together, we kind of disperse about the house, just to meet again to share a meal, three times a day - that has proven to be pretty cool - and then, there we go again, off to enjoy each other and re-discover who we are and what makes us a family.

The snow is even bringing us closer to our faith and our traditions. In an effort to get creative I decided to introduce the kids to the "novena" of Baby Jesus so Victor, Frankie and I have prayed together and sang "Villancicos," Christmas Carols in Spanish, awaiting the birth of Baby Jesus on Christmas Day. Singing and making noise with our maracas and tambourines fill our hearts with joy and puts things into perspective, especially for me. Instead of getting grouchy and complain about the snow, I have to admit that being forced to stay at home with the family for a looooonnngggg time - longer than any hurricane had kept us indoors before- has made me thankful for the opportunity to kick back and relax, wondering what the next game will be and what to make to eat!

Yeah, I have to admit that a white Christmas does look very pretty but after so much snow this week, we could use a visit from Mr. Green Christmas himself: Mr. Heat Miser!

Our Advent Calendar with a backdrop of snow

Our street covered with snow

Icicle formed outside our bathroom window

Frankie Is Still A Baby or The Potty Training Story

I couldn't really decide on a name for this blog entry. I've also had a really hard time finding the right angle to post our most recent adventure with Frankie.

The truth is that potty training, "cold turkey style" (pull ups out and underwear only), has been a different and trying experience for everyone in this family but mostly for the incumbent, Frankie, also known as Rudolph, Santa, Candy Cane, Frosty, Lolly Pop and lately "Baby Bear." He is taking on every make-believe personality he can just to stay away from being "Frankie," a.k.a., the boy who needs to grow up and stop using pull ups. Mr. Multiple Personality is trying to be slick and has decided that wearing underwear is not for him, although it implies being a big boy, usually his ultimate goal following on the steps of big brother Victor. This time, Frankie is choosing to remain a baby. I tend to believe it has been the "hard work" involved in using the potty that has convinced him not to grow up, at least for now....but then again, who wants to? I know, I don't, and I am pretty sure most of you don't want to do it either! Today marks a week of the beginning of our "intensive potty training," three-day extravaganza, which we were able to pull off with the help of our lovely elves from the UW Autism Center. After the party was over, the weekend was crazy and this week has proven to be no less than insane so far. The three-day stuff was intense but it was also fun; we played tons of games and enjoyed the holiday season together...movies, pizza, stories and of course accidents but most of all, we really enjoyed helping Frankie take the next step in his growing process.

One big helper in the potty training this week and the reason why Frankie is now "baby bear" instead of just "baby," has been "Big Mama Bear" (see above slide show). Mama Bear is busy using the potty, besides doing some cross dressing on the side (wearing Frankie's underwear). She also has an incontinence problem (needs to go all the time) AND is dealing with constipation (ALWAYS trying to do #2) so she spends all day on the potty. Frankie is responding pretty well to sharing the bathroom with Mama Bear and I think we are getting close to accomplishing our ultimate goal! The big red bin full of goodies is working out great for positive reinforcement and avoiding accidents but we've had to resort to the heavy duty stuff to inspire Frankie to do more: WALL-E toys/movie, along with some help from the Monsters Inc. boys.

Frankie's potty training is still a work in progress so we can't really say we are all done yet. Incidentally, it just crossed my mind that we, as adults, are rarely ever done growing, adjusting and/or evolving - we are always dealing with some sort of training, emotional or physical, at one point or the other. Frankie's choice to remain a baby, human or cub, does not seem like such a crazy idea after all when you realize how much easier it is to say NO to change than conquering your fears. In the end, it is all better when it's all done!