Sunday, May 21, 2006

Observations of a Different World

As I've come to learn with Miss Paige, sometimes I can't always predict what's going to be happening in our lives, and how our lives will evolve. Even more important than that, I've come to learn that its o.k. that life is full of forks in the road and changes to our path as we go along.

If you had asked me a few years ago about inclusion in school, I would have readily jumped up and stated that every child should be fully included in their regular classrooms with their same-aged peers, regardless of their intellectual or physical abilities.

I'll even go so far as to say I could have probably quoted you the specific laws which protect our children, and allow them to be in regular classrooms.

And I still maintain that belief. The reality is that it is my hope for Paige that she does learn to function in a "normal" world. I fully believe that people with Down syndrome have gained leaps and bounds in our society because of the efforts of parents who have come before me and absolutely insisted on integrating their children into regular classrooms.

Further, I believe that it is not only of great benefit to Paige to know and learn from "typical" peers, but it is also of great benefit to her peers to know and learn from her.

I think it is a fantastic lesson for children to learn a bit of humility; to learn that its not always about the fastest, smartest, best all the time--sometimes its about letting someone have a turn no matter how long it takes, or offering a helping hand, or a kind word to another human being.

Sometimes, its in our "un"equalness (for lack of a better word), that we discover the real truth -- just how equal we all really are.

But...I have strayed on my total integration path this year.

We were offered the opportunity for Paige to spend half of her day with her "typical" Grade 2 peers, and half of her day with a "Living and Learning" class where she would be with 5 other high needs children. This class concentrates more on the lessons of daily living--self-care, such as dressing themselves, cooking, talking about good food choices, and adds things such as their various therapies--Occupational Therapy, Speech Therapy, PhysioTherapy, etc. They also work hard at interacting with one another, and learning skills such as sharing and compassion for each other.

Of course, this opportunity did not come without hesitation from me. How much would Paige, who herself is severely speech delayed, gain in a class room where only 2 of the 6 children were conversational? How much learning could be done for children who's needs were so vast and varied?

Each child has a full-time aide in addition to the classroom teacher. All of the aides work wonderfully together, and have great relationships with one another, and with all of the children in the classroom. And the classroom teacher is just phenomenal--she truly loves all of the children in her classroom, and works hard to help them in every way she can.

One of the activities that the kids from L & L do is to go to a therapeutic swim class every other week. It is amazing to see Marc, who was absolutely terrified of the water at first, be so excited and want to jump right in now. And three of the kids, including Paige, are now swimming independently.

All of these positive things that Paige is offered is one of the reasons I know we made the right choice for her.

But, its not the big reason.

The big reason can only be explained when I tell you about last Wednesday. Last Wednesday, I arrived to pick the kids up for swimming (I take some of them in my van).

As usual, Marc greeted me at the door with a HUGE grin, "Paige's Mom, Paige's Mom, are we going swimming?" Yes, Marc, today we are going swimming!!

And as I showed him how to fingerspell his name, like I do every time I go to the classroom, he laughed a big belly laugh, like he so often does.

As I'm standing waiting for the kids to get ready, I see Paige and Brooke in the smaller play room of the classroom; Paige is taking Brooke toys to play with, and although neither of them speak, they are interacting so well.

Damien, who's spoken language consists largely of repeating what you've said to him back to you again, brings me over a book where he has written "I like to watch TV." I read it to him, and he says, "I like to watch TV, I like to watch TV" as he's reading it back to me, he asks for his picture to be taken. Damien will do just about anything anyone asks of him if they snap a picture of him doing it.

We go into the hall, and the kindergarten class from across the hallway is in the corridor. Paige immediately scans the crowd for Taylor, one of the little girls she has made friends with this year, and escapes for a quick hug. Taylor, although 4 years younger than Paige, is a bit taller than her, and jabbers along to Paige like she's just another kid in the hallway...she doesn't seem to notice or even care that Paige doesn't talk back.

As we are leaving to go to my van, Paige is with me and her aide, and Brooke is behind us. Brooke has a lot of problems with her gait, and is not very steady on her feet. Her aide, and the classroom teacher are holding her hands. Paige goes over to Brooke, and gives her a big hug. Brooke lights up with a big smile and gets all excited.

We start going down the stairs, and Paige is holding my hand. She's not so steady on her feet either. At every step, she stops and checks to see if Brooke is still coming.

When we get to the bottom of the stairs, Paige reaches back and takes Brooke's hand to help her along.

When we get to the pool, Paige's friend Emma is already there. Emma greets Paige with a big, deep "PAAAAAAAAAAAAYYYY" in that funny little voice that is so sweet coming from her tiny body.

Paige and her give each other a big hug, and Paige says, "awwwwwww" to her.
Then, Emma goes over to the little table that is in the play area, and takes a chair to sit in. But, she doesn't forget that "Pay" is there with her. She gets her a chair too. Paige goes to sit down, and gets a book to look at, but she, too, remembers Emma, and takes her a book as well.

The two of them sit at the table and babble in a language that I'm convinced makes perfect sense to them--they are lost in their world of just being best friends happy to see one another.

There are many more examples that I observed that day among all of the children. Their communication skills are absolutely amazing--to the point of them even realizing which kids like hugs, and which ones don't.

Its a wonderful world to be a part of, even for an afternoon. What a blissful escape from the "reality" that so many of us crave for our kids with DS. No one notices ears that are too big, or glasses that don't stay pushed up on the nose, or hair that isn't quite perfect. No one cares the brand name of your shoes, but they sure are interested if they are shiny and red, or light up when you dance with them.

And when a social grace has slipped away from one of them, they are wonderfully forgiving of one another. Sometimes its not easy for one of the kids to remember to wait their turn or not to throw something that shouldn't be thrown; but the mistake is quickly forgiven and forgotten.

And in this world, because nobody is perfect, it seems as if everyone is.

Paige still does well in her regular classroom too--although, as we expected, the differences do get greater as she gets older. But the differences are mostly academic.

Socially, Paige remains very included in her school. She waves to everyone, and everyone in the hallway says hello to her. At recess, there's always a whole gaggle of kids who come along and take Paige's hand and include her in a game of London Bridge, or take her to the swingset and fight over who gets to push her.

Her classmates have never known a classroom without Paige in it, and do not see it as anything other than a part of their world too--exactly as I had hoped for.

The amazing thing is, Paige gets to be a part of two worlds..."Italy" and "Holland" and I get to go along for the ride.

I can't wait for the next fork in the road, to see where that tiny hand takes me.

Tuesday, May 16, 2006

Leave Me A Word!

We got Paige a tiny little i.d. bracelet for her First Communion. It has a little cross etched out of it on one side.

We are having her name engraved on the front (of course!), but we're trying to think of something to put on the back of it.

It has to be something short, because its not too big, so just one word or two small ones, lol.

I wanted to put "Dance!" on remind her to always embrace life, but Wayne thinks everyone will just think it means "dance" like its her favourite hobby, as in soccer, baseball, etc. (I think the exclamation point will make all the difference!)

I thought of "Blessed" "Cherished" "Loved"

I can't decide!!

I know that not too many people will actually ever see it, lol, but I want it to be just the right word!

So, if you're reading this blog today, leave me a one word comment!

Thursday, May 11, 2006

Saving The Best For Last

I saved these last two pictures of Paige from her First Communion to post today.

These pictures are not retouched--there are no filters on the camera; they are just beautiful pictures.

Paige is in the arms of her cousin, my nephew, Craig.

Craig lives 250 miles away in NH, and before that, lived in Washington, DC, so we haven't seen a lot of him over the past few years.

Craig is 28 years old, and last September, married a very sweet, smart, beautiful young lady named Allison. They had a gorgeous wedding, surrounded by many friends and family.

This weekend, Craig and Paige were nearly inseparable. They played together, and cuddled together constantly.

Craig was the first grandchild born to our family; I was 14 when he was born. I adored him so much as a young child, and still adore him to this day.

From a very early age, Craig has had an amazingly beautiful soul. He's very gentle and sensitive and sweet. I've never heard him have a bad word for anyone. He's just a very GOOD person, who would do anything for you.

He's also extremely intelligent; he was reading at 3, and when asked how he learned to read, he said, "I just knew", as if he were born with that ability.

Craig is very analytical and philosophical...he has well thought out opinions, and is a joy to just and talk with. In fact, the Friday night before his wedding, he and I sat up until 5:15 a.m. talking.

His wife, Allison, is a perfect match for him. She's very beautiful and smart, with bright sparkling eyes that light up when he comes into the room.

They bring out the best in one another, and really are a match made in Heaven.

This weekend, Craig announced that he is GOING TO BE A DADDY FOR THE VERY FIRST TIME!!!!!!!!!!!!

Needless to say, I was jumping for joy!!! I was happy, happy, happy!!! And so very excited!

What a lucky baby it will be so loved and so welcomed and so cherished before he or she even arrives.

Craig will make an amazing father--he wears his heart on his sleeve, and the birth of his child will make that heart grow even bigger.

Congratulations, Craig-O...I'm so very proud of the man you have become, and I know you have a wonderful life ahead of you...

Wednesday, May 10, 2006

Paige's First Communion

Today's post is going to be a "picture tells a thousand words" theme. I want to share the pictures of Paige's First Communion.

It was a glorious day--sunny and bright and beautiful. Paige looked like an angel in her pretty dress, and did so well at Mass. She took her First Communion so well, and we were all so proud of her.

The details of her dress show up so pretty in these pictures.

Almost time to go in!

Wayne & his parents with Paige

All done at Mass! Let's go play!

They say communication is 5% words and 95% body language. This is Paige with my sister, Kathy. No need for words here..

So very pretty!

I love my big sister!!

Practicing my "prayer pose" (in case the Big Guy is watching ;) )

It was so cute as we were leaving the restaurant where we had lunch, Paige was walking out, and there was a little girl there about 3 or 4 years old. As Paige went to walk by her, the little girl's eyes got HUGE and she said in this breathless whisper, "Look, there's a real princess here."

It was too adorable!

And, of course, Paige had to stop and give the "royal wave" to everyone in the entire restaurant on the way out, lol.

Wednesday, May 03, 2006

Sweet Moments of Childhood

Tonight was one of those moments you don't want to forget, not for its great importance, but for its simplicity and sweetness.

As I was giving Paige her bath, I sat on the edge of the tub and put my feet in the water with her. She was playing with bathtub "fingerpaints" that smelled like strawberries.

So, I squeezed some paint on her arms, and her tummy. She was rubbing it and playing with it. Then I put some on my own legs, and she began to trace little shapes and circles in the paint on my leg. She was so delicate and gentle, and was jabbering in that tiny little voice of hers as she did it.

She'd play in it; wash it off, put some more on, and just smile and "talk" with me.

And then she did the cutest thing - she lifted one of her legs out of the water and put it on the edge of the tub, and "painted" her legs too. It was so cute to see her so intent in what she was doing, and just so very content; not a care in the world.

It was one of those moments of parenthood that you cherish, and want to freeze in time.

I always feel so physically connected to Paige. When she falls asleep in my arms, our breathing is in sync with one another--we take the exact same breaths, in and out, as if we are still one.

I loved our Mommy and Paige time tonight; after her bath we rubbed lotion on her legs and feet, and arms, and dressed her all up in her little penguin pj's. She sat still for 20 minutes while I brushed her hair until it was almost dry.

And then came and just sat on my lap with a big contented smile on her face until she fell asleep.

Heaven, I tell you. Pure Heaven.