Stay Tuned

I know that I've been remiss with this whole blogging thing, but inspiration and motivation are on their way in the form of 31 for 21.

Don't know what that is?

Well, Ds is actually also known as Trisomy 21, a triplication of the 21st chromosome.

And October is Down Syndrome Awareness Month.

There are 31 days in October.

Voila!

31 for 21.

I'll be doing my part to raise awareness, one post at a time.

Though, honestly, I won't just be talking about Ds.

I still have to catch you all up on what we've been up to lately.

And, ahem, not so lately.

*insert bad blogger slap on wrist here*

Don't you want to know about our vacation in Costa Rica?

And our trip to the the NDSC Convention?

What about that time we won a Wii?

I'll tell you about all that and more if you stick around.

Promise.

Let me know you're here following along, k?

Not that I'm above talking/writing to myself, but still.

I like knowing that I have company on this journey.



Grab This Button

Sometimes

Sometimes I want people - you know, those people - to have a kid with Ds so that they can finally get it. So that they can see that I'm no different from them. So they can understand what it feels like to want to protect your child with every fiber of your being. So they, too, can feel the pain that comes from the sting of ignorant words and can hope and pray, like I do, that their child never has to be the recipient of hateful slurs.

When they have that child, then they can step up and be an advocate and help me to help others to see the light that we see. Show them that it's not so hard to be decent. Show them that we feel the same love for our kids that anyone else would feel for theirs. Show them how our kids are so much more than the convenient butt of a tired joke.

But then...

I change my mind.

Because...

What if they don't change theirs?

Whoops!

Guess who forgot picture day at preschool?

Well, that would be ME!

I am no longer in the running for Mother of the Year. Obviously.

She looked so cute today though, so maybe they'll throw us a bone and provide the option to buy later (even though it looked like it was all pre-pay orders).

I'll be ok. I mean, we did get our I'm Down with You book in the mail yesterday.

I'll just enjoy looking at that pic for a while.

Did you see it?

Yes, Again.

Does anyone really think that I like talking about the R word?

'Cause I don't.

I hate bringing attention to it because that means that I have to explain when people always ask, "What's the R word?"

"Why does it bother you so much?"

"Can't you just ignore it?"

"Don't you understand that they didn't mean it that way?"

The word is r*tarded, it makes me angry and sad when used to describe anything negative, it hurts to the core, and I just don't.

To put it simply.

I. Just. Don't.

If you know me, you know it's not about being PC. It's not about being the Word Police. It's not about trying to control anyone else and make them act in a way that's suitable to me.

No.

It's about not unnecessarily hurting others.

They are lots of other words out there.

Lots.

Last week, when I heard J*nnif*r An*st*n (letters removed to try to keep away the nosies) say, "Yeah, I got to play dress up. I do it for a living, like a r*tard," I cringed. And then my heart ached because the audience laughed. A group of people, most likely adults, enough to be heard, laughed.

Every time I watch TV and hear every other word bleeped out, but then "You're r*tarded" or "He's such a r*tard" gets through, I am reminded that so many people don't feel the way I do. These just aren't inappropriate terms to them.

I know it doesn't hit hard to most people that have not been personally influenced by a person with an intellectual disability. I know this. I get it.

Personally, though, I got it before Playette was born, too, so I know it's possible. I got it out of compassion and common courtesy. I didn't defend my right to use words that hurt other people. That's because the words weren't more important to me than the actual people.

That's all I'm asking of others. Just the very same thing I asked of myself. Nothing more.

Dave Hingsburger gets it. I ask that you take a moment to read his words.

The Notebook

Last week was busy as we prepared for the start of preschool. I already mentioned that I didn't have the requested composition notebook on hand the first day and had to improvise, but by Day 2, we were good to go.

Since this was my first time using this sort of thing, you know, a book to communicate with my child's preschool teacher, I thought that maybe I'd start it out. So I wrote her a little note:

"Ms. C,

Playette is very good at learning new things quickly. Please allow her to show you her potential. :)

She can wash hands, clean up, and uses the potty fairly well (we are working on her telling us 100% of the time - she knows the sign for "potty"). She loves to read books and dress up/play pretend. She is such a fun girl!

Today, I provided all of the Thick It that I had left at home. Please let me know when more is needed. She needs one large scoop for every four ounces of liquid.

If anything else is needed, I am happy to provide.

Thank You,

The Mama"

==

I was totally winging that and probably should have given it more time and attention, but it was five minutes until the bus was due to arrive and I just wanted to get something down. It's hard not to know what's going on during your child's day, especially when they can't tell you in a language that you can understand.

==

She replied:

"Hi The Mama,

We are seeing great skills. We are definitely going to help her learn more and achieve appropriate shills by practicing and doing them by herself. We will maximize her full potential.

At this point, we are still observing and learning what she can do.

We'll let you know what else she needs.

So far, she is doing great. She is enjoying playing with her friends and vice versa.

She is so adorable.

Ms. C

Note: I'm sending letter for our picture day on August 24th."

==

Gotta admit, this made me smile.

==

Nothing else came last week, so today, I wrote again:

"How is Playette doing?
Is she making friends?
Following routines?
Communicating in a way that helps you understand her wants/needs/desires?

Please let me know if a list of her ASL signs would be helpful for you to have.

Thank you! :)"

==

Reading that now, I sound like a loon.

==

And the response:

"Hi The Mama,

You can check her progress notes when you pick her up everyday. It's going to be seen next to the sign-in sheet. But be reminded, progress reports will be sent Friday or Monday.

Yes, she's following directions 85% of the time. If not, then we assist her with that. She tells us what she wants and needs right away. She complies to all of our routine and directions. She may at times say "no" but she can easily be redirected.

So far, she's doing great."

==

Good to hear.

Ok, so I'll back off from being Crazy Lady now.

Thank you, Composition Book. Though your tenure was short, you've served us well.

Bring on the Weekly Reports. WOOT!

Delightfully Boring

That was our drop-off today.

After finally getting bus info yesterday at 3:30 pm (I called one final time during our trip to the aquarium), we had quite the crazy morning, but then?

It all kinda fell into place.

At least I hope it did.

From where I was standing it did, anyway.

Sure, I realized at the last minute that I actually had to pack her a snack (<--spoiled by generous daycare) and that I didn't buy rubber gloves or a notebook, but I improvised.

1. Goldfish crackers and a cut up pear with a bottle of water. How excited was I that we actually had paper lunch bags in the pantry? VERY. Probably overly.

2. I have no idea why we had a baggie full of gloves under Playette's sink, but we did so I grabbed them.

3. We had manila folders in the office so I grabbed one, stapled a piece of printer paper inside, and wrote "Playette's Notes" in red marker on the outside.

I am so proud of myself it's borderline pathetic.

So, there I was, rushing around and sweating in my turtleneck and cords and furry boots in August, when I heard a noise.

Like a diesel-y truck noise. It took me a few minutes to realize that it wasn't trash day and more than likely that was Playette's bus sitting out in front of the house.

I grabbed her, ran downstairs, threw open the door and there it was.

The short little, yellow bus.

Wow.

I soaked that in for about 5 seconds (ok, whatever) and then walked to the door, introduced us to the driver, asked if she would be the only child every day (no, there are two others), where she would sit, and a couple of other things. I told him that we'd see him tomorrow and off he went.

Playette was very shy-acting during the whole thing, until I reminded her that the wheels on the bus go round and round. Then she got excited. That girl loves a soundtrack. Hopefully, that's a good sign and she'll be good to go tomorrow.

A few minutes later, we left and I drove to the preschool. Her teacher was waiting out front with another little boy that had just gotten off of his bus. Together we walked inside, passing in between the rooms of the children in Head Start screaming on our left and some of their parents outside crying on our right.

Once in the room, Playette got to exploring. She was happy. She started playing with the little boy. It was that easy.

I talked to the teacher some about what I had brought inside my Santa Sack o' Crap and that was that.

I left.

No tears from either one of us.

I always feel bad that I don't get sad about stuff like this.

I'm just glad that from her perspective that it all went smoothly.

I'll leave in a few minutes to start the afternoon transition from preschool to daycare. Hopefully, it'll be snooze worthy. That's what I'm hoping for.

Update?

There is no update.

The teacher was supposed to call me back regarding Playette moving to the morning session, as we had planned and discussed ad nauseum in June, after a meeting they had about the topic at noon.

That was a long time ago and everyone has long gone home, I'm sure.

I did get a call from the Special Education Student Support Services Director though. Awesome, right? Progress!

Except, she rushed through telling me that they needed us to fill out the transportation paperwork since we failed to do so at the IEP.

Wow.

She was at our IEP. In her office. Where BD and I filled out every paper they gave us, including one that said we had to allow them to "restrain" our daughter on the bus. I had a problem with that. And then they explained that, basically, the 5-point harness seatbelt was considered a restraint to them and if we wanted her strapped in, we had to agree to it.

I hate being told that I haven't done something when I know good and well that I have. Or vice versa.

She had someone fax me the paperwork - the very same paperwork that the Associate Superintendent confirmed that she had last Thursday - I filled it in, and I faxed it back.

Then, I called the Special Education Student Support Services Director back and told
her voicemail what I had been trying to tell her whilst she kept cutting me off and rushing me off the phone.

The voicemail and I had a much better conversation.

I reminded the voicemail about the restraint paperwork (that we "didn't" fill out *cough cough*) and how if it truly was necessary, could they please send me that to fill out again, too, please?

I mean, if you're going to try to play me, at least send me the complete packet to fill out againsomemore. It's not like I have anything else to do with my life, right?

By the way, I've upgraded to snacking on pita chips and edamame dip.

At least that sounds healthy.

Though I still love me some graham.

Oh, and I ran four miles. Like this situation, it was tortuous, but at least I burned calories.

I also had a very good conversation with an advocate/mom in the place where we may move to next. We chatted about schools and she basically talked me off the ledge. So that was good.

Tomorrow is another day...