Monday, March 10, 2014

Making It Happen: Discover Community School

Do any of you watch Parenthood?

I do. Love it. If you don't, it's totally worth adding to your list of good TV options.

I used to cry at least a little during every episode. It's just that good.

Part of what really got to me is that one of the families depicted has a child with autism and the parts about the frustration and the joys and the waiting and the therapy and the...well, almost everything...just really hit home.

And the love and sincere connections they all have with one another? Yeesh. I'd like some more of that, please.

Over time, I went from wanting to be any Braverman to wanting to be Christina Braverman, specifically.

Why that character?

Well, because she's strong. She's been through a lot. And she doesn't compromise when it comes to her kids. If something doesn't exist, she creates it.

Which is exactly what my friend, Stephanie Willson, is doing by starting Discover Community School in Tampa, FL.

Discover is an independent private school for children with cognitive disabilities and their typical peers. Their purpose is to support every learner, to meet children at their ability and offer project based learning by differentiating curriculum, playing to students strengths and providing a home school like environment.

While Steph has the knowledge and the drive, she, unfortunately, does not independently possess all of the funding required to complete such a huge undertaking. She's a wife, mother, friend, and a fantastic photographer (remember these?) with a huge heart, but that only goes so far when you need a commercial lease.

For that reason, Discover has an indiegogo campaign going on right now. Click here for more info.

I know there are a lot of really good causes out there and most of us can't give to everything. But if you can, please do.

Or maybe you know someone (or know someone who knows someone) who could benefit from attending this kind of school? Tell them about it. Tweet it. Put it on Facebook. Every little bit helps.

Thanks for reading, y'all.

Thursday, February 6, 2014

The Stranger

Something happens to you when you lose a parent. I'm not anywhere near an expert, so I can't speak as to what everyone feels, or even what most people feel, but I can't talk about how it has made me feel.

I was 18 when my mother died. I had just returned back to college after Christmas break. We had had a falling out, but had made up by phone a few days before. She was planning to visit me soon. I remember her being upset about me wanting to go out for New Year's Eve to a club with my friends. She told me that it may be her last and I accused her of being overly dramatic. 

I went. 

She died on January 12, 1995. I wasn't there. I was notified in the middle of the night and driven home shortly thereafter. I have not been the same since then, obviously.

I read a book recently, about how the author dealt with the death of her parents. I found myself feeling so much empathy. I thought about how hard that must have been, and still be, for her, even though our situations were so very different.

The reason I even bring it up today is because I came across a book yesterday. The Stranger by Albert Camus. The memories came flooding back. I remember having to read this before the start of my senior year in high school. I remember sitting at our glass dining room table at the large desktop computer, typing out the report that was due very soon. I remember tapping into the most creative part of myself as I developed a diary for the main character, based on his actions in the book. I remember being very proud of what I did and I remember being extremely excited that my teacher recognized it, too. It's sparked something in me, getting that "A". I felt like I was finally good at something. It made me want to become an English professor.

The thing about losing my mother is that I have in my possession so many things, both sentimental and random. There is no family home to return to. We lived in an apartment in 1995 and before I returned to school, everything had to be removed. My address became my mailbox number. Many things were thrown away, somethings were stolen, the rest went to storage.

I have all of the old family pictures. I have pieces of furniture. I have books from high school. I have my mother's notes from college and her greeting card collection. I have school pictures of people I haven't seen in almost 30 years. I even have that report on The Stranger in a box somewhere, I'm sure of it. 

We move these things from place to place every two to three years. 

I never became an English professor, as is probably obvious by my grammar and sentence structure. 

My mother convinced me to pursue engineering.

I wonder if she would be proud of who I am today. I no longer consider myself an engineer (I've long since forgotten so much of what I learned), but it was a great experience. I saw the world like she wanted me to. I finished what I started.

I know that mother-daughter relationships aren't always perfect. I don't tell myself that if she were here everything would be great. But I do miss the opportunity to call her, to have a lap in which to rest my head when the days get so, so hard and I just need to cry and have my head stroked. I want more than anything for my children to have a grandmother in their lives. I think that my mother would have been a grandmother much like her mother was to me and that would be a wonderful thing to have. 

It's amazing what finding an old paperback in a  box can bring to mind. 


No wonder I can't declutter. All! These! Emotions! 


Wednesday, January 29, 2014

Snort

I was just about to put Dez down for nap and stopped to change his diaper. Playette sat on the floor near my feet and was quiet for a moment. Then, she started saying some letters. I quickly realized that she was reading something off of one of the items I was using.

P-A-M-P-E-R-S

"Great job!" I said, taking every advantage to encourage her. "What does that spell?"

With every ounce of confidence and pride she possesses in her little body, she replied, matter-of-factly...

 "Wipes."




Tuesday, December 24, 2013

From: Us, To: You


Since last year was a bust in the card department, this year we have two!





Enjoy this time, friends, and we'll chat more in 2014.


Monday, December 9, 2013

The One Where I am a Total Hypocrite

A little over two months ago, I wrote a post about the politics of respectability and how it related to picture day in my house.

What I never came back to say was that the pictures actually came out horrible. 

I know, I know. How could that be? The one I took it home before school was super cute, right?

Pardon me for a moment while I laugh and laugh.

Basically, after all of that reflection I did in October, I had to go through the same multitude of emotions and primping so that I could prepare her again, today, to do retakes.

What makes it worse, and proves to me that I still haven't learned the lesson, is that the entire process has been a cluster eff of the highest magnitude. Any one of these things would have been reason enough to just say to myself that it wasn't worth it and that I needed to just chill about the whole thing.

First, our local weather was such that the schools started on a two hour delay today, throwing everyone's schedule off.

I could lie and say that I decided to drop Playette off to school out of concern for her safety, but that wouldn't be true. 

In my mind, I would take her, ask her to smile pretty, and 30 seconds later she would be on the way to class with nary a disruption.

Of course that isn't what happened.

Even though we had about five hours to get ready for school this morning, it was still crazy getting both kids out of the door. I couldn't find the bus dispatcher's number. I was googling and calling and texting, trying to give notice that I planned to take her in myself. Then, I got to the school only to find that everyone else was driving their kids in, too. Or, maybe it's always like that in the morning. I don't know. I like the bus.

Anyway.

Got the kids inside the school, got a visitor sticker, and walked Playette to her classroom. By this time, the school day had started.

I am now officially creating a huge distraction because I have a baby with me. There are many squeals of "Baby Dez!" And "Hey, that's [Playette's] mommy!"

Oops.

Not what I had in mind.

We hustled to the media center only to find out that the photographers were about 45 minutes away from being ready to start taking pictures.

Oh, but I'm no quitter. Did I take my toddler home and just hope for the best? Of course not!

Instead, I cried on the inside, knowing that between that moment and noon would be when Playette would have lunch. I also cursed myself for packing chocolate milk.

I left her in her aide's capable hands and went off to run errands with Dez to kill time. 

This would've been the perfect time to say, "You know, Crittle, it's going to be fine. You really don't need to keep this up. You have plenty of other things you could be doing."

But, noooo.

I went back. Got another visitor sticker. Went back to her classroom. Caused another commotion. Smiled weakly and apologetically to her teacher. Went to the media center. Cut the line. Felt extremely embarrassed when they snapped about 20 pictures and none of them had her looking at the camera. Felt the heat rising in my face. Mumbled "Number 24 is fine. Thanks." when it really wasn't. Grabbed my kid. Thanked all of the other children for sharing their naughty elf stories with me while we waited. Dropped Playette off at PE. 

And then I let the office ladies know that I would see them soon because I have to go up there for a third time in a shortened day to pick her up for an appointment after school.

See? Easy peasy.

[Insert massive eye roll  here]



Side note: A friend reminded me earlier today about my own retake story. I'll come back and write about that because it is utterly ridiculous. I've been a nut since I was a kid, apparently.


Saturday, November 2, 2013

Special to Me

We supported a 5K today. It was a fundraiser for the two teams with members with special needs on the cheerleading squad in which Playette participates. 

A couple of friends from my running group joined us, which was great. The three of us did the race while BD, Playette and Dez served as cheerleaders.

It was a tough course. Lots of twists and turns, lots of hills, in addition to slick leaves on the trail. I also think it was probably the longest 5K I've ever run in my life.

But we all made it to the end. We had fun and raised money. Mission accomplished.

It was a bit of a walk back to the parking lot after the festivities had concluded. Playette and I were on one side of the road, laughing and joking around. On the other side of the road, there was a mother with her young daughter. As we approached the car, we crossed the street and ended up right in front of the other mother and daughter. 

The little girl spoke up and asked her mother question. 

"Is she special?"

Her mother didn't respond. I assumed that she was trying to formulate what to say.

The little girl was impatient so she turned to me and asked the same question.

"Is she special?"

Her mother apologized, but I told her no it was perfectly fine. This was a great teachable moment.

But...I had nothing.

Crap. Here it was. My chance to say all the right things. My opportunity to teach one small child and, hopefully, make some sort of positive impression. Why didn't I have the perfect words?!

So I said: "She's special to me."

I knew that was a cop-out. So I threatened my brain to come up with something better. Quickly.

I decided to engage her in conversation. I asked her if she noticed that Playette was just a little bit different than her. She said yes.

I asked her if she knew that her body was made up of lots of tiny cells. She didn't know what a cell was.

I took a different approach. I told her that when Playette was born she was given just a little something extra in her body. I told her that she was a lot like her but there was something a little different that made it take longer for her to learn certain things. 

That she understood.

I told her that something different is called Down syndrome. I asked her if she knew what that was. She said no. I told her that was okay and it really didn't matter right now. 

I asked her how old she was and she told me she's six. I asked her if she was in kindergarten or first grade and she told me first grade. I said,"That's great. My daughter is also six and in the first grade. You have a lot in common already."

I asked her if she was learning to read. She told me she didn't know how yet. I told her that Playette was learning to read and that when we were making all those jokes while we were walking it was because we read them in a book that she has been enjoying lately.

I asked her name and she told me. It was extremely close to Playette's actual name. She really enjoyed that coincidence. 

She said, "It's like we have the same personality!"

I exhaled. 

We had reached our destination. The girls happily said goodbye to one another and everyone parted company with a smile on their face.

Failure thwarted. 



Thursday, October 31, 2013

BD's Annual Post: Family

It’s not often that I get to jump on the blog and say my piece.  Actually, this is the only time each year I jump on the blog to say my piece.  We all know this is not my thing, but every once in a while (Halloween), I get overcome by the blogger spirit.

I love that everyone has a place to learn about our experiences as they are so eloquently expressed by “The Mama”.  This blog has done great things for our family as far as connecting goes. 

While our lives are nowhere near perfect, we still love sharing some of what’s going on with the world.  We’ve connected with and met some fantastic people throughout our time on this journey.  A lot of those folks we met via blogs and the internet. 

There have been times of laughter and times of sadness.  There have been times were we were apprehensive and scared about the future and what lies ahead.  The support from people all around the world is amazing.  It makes us feel as if we always have someone who cares about us and what we are dealing with.  There are people out there going through the same struggles, be it ridiculous amounts of medical appointments, school drama, or just a crazy toddler who likes running into things.

This great Ds community, connected via the internet, has helped us stay on the path, navigate,and continue to push forward when life comes at us hard, as well as when things are going well.  We would be lost without it. 

Everyone has “actual” family and “actual” friends, and our experience and support with them is different based on the history that came well before our entrance into the Ds world.  The added support and knowing that the Ds community all around the world, families like us everywhere,  have our back makes getting out and pushing forward through the challenges of each day so much easier.

So for those that read this blog, thank you for your support.  For those who write their own blogs and share their experiences, thank you for your support.

Just know we’ve got your back too, because to us you all are family.