Archive for October, 2012

Homework

Not to disappoint, but this (surprisingly) isn’t a rant!

It is actually quite the opposite. 🙂

I already told you that Chloe has missed a lot of school because of absences. That means make-up work to complete at home. And she’s been doing great work!

She’s been doing great work at school and at home, actually! So proud of her and so in love with her teachers who are encouraging her to step up to their expectations.

The other day Chloe was completing a social studies project at home that she had missed at school. She needed to type 4 sentences about the Kawakana indians. (Ever heard of them?) She was copying the sentences directly from her social studies textbook. I videoed her working, and wanted to share it here. What a hard worker!

West?

Zippy accompanied me to pick up Chloe from school this week. He usually isn’t with me for pick-up.

Chloe is attending a new school this year: City Hills Elementary. Oddly enough, there is another elementary school about 5 blocks away from her school. The other school is called West City Elementary. It’s odd that they are so close together.

After we picked Chloe up, we drove past West City Elementary. Zippy piped up from the backseat, “Is this still City Hills?”

“No,” I explained. And offered that it is odd for 2 schools to be so close together.

He agreed, but I could tell that there was something else on his mind. After a minute, he commented, “Shouldn’t this school be City Hills and the other one be West City?”

I was silent. I couldn’t believe he had so easily made such a profound observation — indeed, City Hills was west of West City Elementary! West City was not the west-most campus. Now, how in the world did he know which way was west??!!

I bragged and bragged on him for his observation. And when I asked him how in the world he knew which way west was?

“Well,” he thought. “I think west is left, isn’t it?”

🙂

Photo credit: queenscarlett.com

Money to Spend

Chloe has had a few difficult days at school. Since she’s been sick so much in the last month, she has gone to school some days and just not felt very well. She is still not well-versed in using words / signs / communication device to communicate feelings or emotions so her communication is sometimes still crying or screaming or just shutting down and appearing defiant. You already know that I fully believe that all behavior is communication … but this behavior is not the ideal mode of communication in our society, right? But that’s just where she is right now.

So anyway, she’s had some difficult days. It’s frustrating for her teachers (but they’ve been amazing about it!), and I’m sure it’s frustrating for Chloe, as well.

Yesterday was a particularly rough day. She didn’t feel well and was not doing anything asked of her all morning. The afternoon went more smoothly, but overall it was a rough day. So today, I pulled out the big guns to ensure a good day for her.

I told her if she had a good day at school — meaning that she does what is asked of her and speaks respectfully — then we could go spend her money at Walmart after school. She was very motivated by this reward and had a great day!

After I picked her up from school, we headed to Walmart to go shopping. When we arrived, I gave her her money — a $10 bill. She was quite excited about holding her money.

I encouraged her to be careful and to hang onto it tightly since it was windy. The money quickly blew away. Ugh. I retrieved it and gave it back to her, encouraging her to be careful not to lose it. She folded it up and stuck it behind her back in her wheelchair. (Cute.) I suggested she put it in her pocket for safe keeping. She agreed.

We went straight to the toy department, and she went immediately picked up several toys that cost more than $10. I steered her toward some less expensive toys. She finally landed on a hard plastic doll that lights up and plays some music — right up her alley!

She was thrilled with her choice and we hurried up to the check-out line. Chloe made the purchase on her own, with only a few prompts from me to get out her money. And we left — Chloe, Astra (the doll), and me.

Now my wheels are turning to come up with a system in which Chloe can earn money for a job well done at school each day. Not sure of the details yet, but I think it will work since she really appreciates spending money right now. I’ll keep you posted on what I decide.

Until then, I hope you enjoy any purchases you make as much as Chloe enjoyed hers today! 🙂

Well, did you?!

Recently, I spent the day doing some work with my mom. My brother was there, too, doing his work. We had fun conversations together while we worked.

Later, when it was nearly time to leave, I had a revelation. I realized one of the reasons it was so nice to hang out with these two kind adults all day was that there was something missing. There was something missing from the day, from the conversation.

You see, at home (or out and about for that matter), when I’m hanging out with Zippy, he asks a question — the same question — over and over and over. When he hears a sound… When he notices something odd… When he senses a new smell… Over and over and over, he asks his question.

The question?

Did you just fart?!”

Yes. Seriously. Over and over and over again. Every single day. If I had a dime for every time I’ve been asked that question in the last 6 months, I would be a rich woman! And I could pay someone to answer all of Zippy’s questions!

At first, when he first began asking the question, I would not only answer his question (with a “No” everytime, of course!), but I would also offer him an explanation:

“That was my shoe.”

“I think it was the chair.”

“Maybe you smell the trash.”

Or whatever. But I quickly tired of trying each time to decipher what it was he was sensing that he was mistaking for his mother’s passing gas! (FYI, it is not just me he asks the question of … no one in his family is immune to the question. And poor Chloe doesn’t just get asked the question — she gets the question asked about her! “Did she just fart!?” I think that’s somehow worse.)

Well, this morning when loving-words Zippy came and laid with me in my bed, he showed me that the question scenario really could get worse. After lying there for a few minutes, he, of course, asked me the question.

Did you just fart?!”

“No,” was my rolling of the eyes response.

“Oh,” he said. “It’s just your breath.” And with that, he got up and left, offended by my morning greeting.

Yep. I’d be a reeeeally rich woman ….

Photos!

As I mentioned, I have been taking photos lately and really enjoying myself.

You see, at the blogging conference I attended the weekend before school started, all the other really savvy bloggers kept mentioning Twitter and Pinterest and instagram, and tweeting, pinning, and photographing — all of which I know very little (read: NOTHING) about.

Twitter I tried a little bit when I had my at-home business and business blog, but it was never anything I did regularly … and I don’t really get it.

Pinterest I refuse to try because, as I’ve mentioned before, I have a very addictive personality, and I’m terrified of Pinterest. Simply terrified. I’m terrified of what Pinterest and an addiction to it would do my life. So I’m steering clear — way clear — of there!

Instagram I knew nothing about. Nothing. But I have wanted to take more photos to post on my blog, and I would like to get better at photography, and I even took a quick little photography class at the blogging conference … so I decided to check it out. And as part of checking it out, I decided to commit to posting a photo everyday for a week or so so I could sorta figure the whole thing out.

Well, I instantly LOVED it! I definitely love instagram! And it is really, probably, maybe a new addiction, but I’m choosing to call it a new hobby instead! I’m learning a lot and having such a good time!

So all of that to say, if you “do” instagram, you can follow me! And then I can follow you, and I’ll be oh so very happy! The cool thing, too, is that you can check out all the people I have decided to follow, and you can see if you like them, too! I love it!

Just a little word from the I-realize-some-of-you-have-no-idea-what-this-post-is-even-about-because-a-month-ago-neither-did-I self: If you want me to do a blog post telling you about instagram and how and why to do it, just let me know, and I’ll do it soon. Because it is so fun! And I’d love to share it! 🙂

Ok. That’s all. You can find me on instagram @ourordinarydays. 🙂

Wanting Community

I think when most people think of institutions for people with disabilities, they assume that institutions are really a thing of the past. In the olden days, parents of a young child with a disability were advised to send them away to an institution. Surely that doesn’t really happen anymore — we’ve come so far.

If most people stop and realize that these institutions really do still exist, they probably imagine the conditions there being much-improved over the old black and white photos that we’ve seen from decades ago of mostly-naked, malnourished people sitting in the corner of a plain concrete room with other mostly-naked individuals, curled up into balls and rocking back and forth.

However, as I have learned the last couple of years, these institutions do still exist. And parents still send their children there. And from what I’ve learned, the conditions have sadly — tragically — not improved much.

(I should note here that I’m talking about Texas’ institutions because those are the ones I know about. I’m unaware of  conditions in other states; but I would unfortunately have to guess that all state institutions lack a standard of care that would meet your/my approval! I know, too, that 13 states no longer have institutions.)

You may know them by the name “state school.” In Texas today they’re actually called State Supported Living Centers or SSLCs. And the state of Texas still has 13 of them. In fact, in Texas, living in an institution is the only entitlement a person with a disability has. Yes, there are some programs that enable the person with a disability to receive Medicaid services and also some community supports, but there is a years-long waiting list for these services. Like literally an 8 to 10 year wait list! They are called “interest lists” and there are many, many people waiting… waiting for the services and the medical coverage that they need in order to stay in the community, stay with their family. (See this link for the actual numbers of people waiting.)

If the family of a person with a disability cannot afford to pay for the care of their family member, and their loved one’s name has not yet come up on the interest list, then the only choice is for that person to be placed in an institution.

And Texas’ SSLCs are notorious for abuse and neglect. What more would you expect from a setting that is totally segregated from society, having its own medical facility, etc. Closed and locked doors. Residents who can’t report the abuse; “professionals” who don’t take the residents’ complaints seriously. It’s easy to get away with abuse and neglect in that setting. No eyes. No ears.

And to make matters worse and more complicated, it actually costs the state (and its taxpayers!) way more money to house an individual in a SSLC than to support them out in the community.

So over and over and over the abuse goes unreported. And even when it’s reported — even when it’s confirmed — nothing is done about it. Abusers go unpunished — and even keep their jobs! Doors remained locked. And money is poured into the management of these institutions to keep them open and running, housing our most vulnerable citizens.

Can you tell it’s a soapbox?? Can you tell it makes me crazy?

It does.

And that’s why our family decided to make our voices heard at a recent rally at the Denton SSLC, formerly the Denton State School. CommunityNOW! along with some other organizations organized the rally/press conference and invited the public and the media to attend.

The rally was scheduled for the 10-year anniversary of the horrible abuse of a young resident: Haseeb Chishty. Haseeb was horribly abused in the Denton facility, and his life is forever altered because of it. He now lives at home and receives constant care from his family. And nothing has been done to date about the abuse Haseeb received.

So Paul, Elliot, Zippy, Chloe, and I joined with other concerned citizens, holding signs for the passersby to read. We heard people speak up about never wanting to be placed in an institution… they instead want their community services to remain and increase. We heard people explain the importance of speaking up to our legislatures about change. And we called for the closure and/or downsizing of all of Texas’ SSLCs.

And we were a part of it. All 5 of us. Because it’s important to us. Because it is very close to us. Because hopefully our 5 voices joined with all the other voices will finally be heard and will be a part of bringing about justice and bringing about change.

And we will be able to say that we were a part of that movement. And we will celebrate!

This slideshow requires JavaScript.

Butterfly

As I’ve already said, Chloe is having such a great year of school this year. The team of teachers and aides supporting her are amazing and inspiring! I truly am very thankful for them for blessing Chloe and for teaching Chloe. Such a beautiful change compared to the last two years.

One of her teachers especially seems to have enjoyed connecting with her. This teacher was telling me today about their special relationship. She explained that Chloe really wants to please her and doesn’t like to disappoint her. If Chloe does something loud — screams out or slams her book — this teacher just quietly tells Chloe that that noise really frightened her or made her worry and asks her to do it more quietly next time. And Chloe is responding beautifully to her. (And what a lesson that I want to her learn across settings: her actions affect other people! She’s not the only person in the world!)

When I arrived at my meeting with this teacher today, she asked me, “Is Butterfly not with you today?”

“Excuse me?” I asked her, assuming I had misunderstood her.

And that’s when I learned that this special teacher has a special nickname for Chloe. She calls her Butterfly. She went on to explain their sweet relationship and how they relate to each other and ways that she shows Chloe that she values her and appreciates her input.

“We have a close relationship; that’s why I have a special name for her,” she explained with a smile. “And when I call her Butterfly, she smiles really big.”

Thank you, Lord, for this teacher! Thank you, Lord, for special relationships and sweet teachers who give my sweet girl special nicknames!

Today’s meeting sure did my heart some good. 🙂

Photo credit: themusicroom.net.au
%d bloggers like this: