Archive for August, 2011

More Tongue Biting

A good friend recently sent me a message:  “I worry about you when I don’t see you update your blog.  You doing okay???”

She is an observant and wise friend.  She knows that my silence is not necessarily a positive thing.  She knows that probably my silence reveals a bubbling, boiling emotion that I’m just not letting out yet.  She knows that my silence might be the result of a mama who is overwhelmed.

Yes, sweet friend, that is the case.

You see, my mom often chided me as a young girl, “If you can’t say something nice, don’t say anything at all.”  I’ve taken it to heart.  And I’m honoring my mama and keeping my mouth shut.

Actually, the truer truth is probably just that I can’t put into words the emotions that I’m feeling the last few weeks.  The injustice that I feel like Chloe is enduring from our school district is very hurtful, and I’m filled with lots of emotions — anger, sadness, resentment, disappointment, fear, shock, frustration, helplessness. . . .  And I’ve chosen to sit a little bit quietly.  And, yes, I’ve been overwhelmed.

And I haven’t had anything good to say.

However, the last couple of days, I’ve tried to take note of some “good” things, and I plan to write about them here very soon.

So thanks for your concern.  And please continue to pray for our family.

Some Tongue Holding

This is the internationally recognized symbol ...

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To the woman who so kindly pointed out to me this morning that I was parked in a handicapped spot, just know that you should be glad I stood silently staring at you.  For it is the things that went unsaid that may have not come out very kindly and may have created quite a scene for the first-day-of-school crowd at Chloe’s school this morning.  Yes, dear woman whom I will probably see again tomorrow morning at school, just know that my narrowed-eyes glare in your direction was the absolute best response I could muster for you this morning.

A lot of days, I oftentimes say a little “Thanks, Chloe,” when a parking lot is full and we get to not only find a spot to park but actually find a handicap accessible spot that is close up.  It’s convenient at times actually.  And I will sometimes thank Chloe for allowing us to have a good place to park.  For it is her disability that causes us to have access to the handicapped parking spots.

But the fact of the matter is that sometimes I resent having to park in a handicap accessible spot.  This was not the life I planned for myself or for my children.  The fact that I even have a handicap parking placard in my car sometimes makes me mad.  I know fellow parents of children with disabilities know what I’m talking about.  That placard symbolizes living a life with a disability — a disability that we didn’t ask for.

So this morning, I got up before dawn to get my kids ready for school.  I resented the fact that while Zippy went off to his school, I was taking Chloe to a totally different school.  Yes, I was resentful.  My daughter being excluded from her neighborhood school because of her disabilities really rubs me the wrong way, and it goes against everything I believe in.

My resentment built as I gathered the supplies that Chloe would need for the day.  Yes, I grabbed her crayons and pencils and spiral notebooks.  But I also had to grab her diapers, her wipes, her wheelchair, and her walker.  By the time we left for school, my car was filled with armloads of stuff that I needed to carry in for Chloe once we arrived at her school.

Not surprisingly, the school was overloaded with traffic when we arrived.  There were cars parked along the streets for several blocks.  There was a line of cars in line to drive through the loop of the drop-off line.  I pulled my van into the drop-off line, hoping that one of the two handicapped spots would be available for us when we got there.

I could almost hear the Hallelujah Chorus playing in my head as I pulled into one of the handicap spots and hung my parking placard on my rearview mirror.  I said a silent prayer, thanking God for the parking space, relieved that I wouldn’t have to make multiple trips from a block or two away.  I sat in the driver seat for a good 3 or 4 minutes just taking some deep breaths and gearing up for taking Chloe inside.

Once I felt I had it together, I opened my door and walked to the back of my van to get the wheelchair out.  Before I could reach the handle to unlatch the back door, a woman in the car behind me snapped, “Ummmm, ma’am, this is a handicapped parking spot!”

I just stood there for a few seconds with my back to her, frozen.

I finally turned around to face her.  She had her window down and was leaning her head out the window waiting for my response.  Her handicapped placard hung swinging from her rearview mirror.

Immediately words came to my mind.  Emotion and anger and resentment filled my mind also.  The woman had no idea the time bomb she had just snapped at.  I took a deep breath and held it, making sure none of my words and thoughts made it out of my mouth.  I narrowed my eyes and just stared the woman down for a good 10 or 15 seconds, silently glaring while my words fought at my lips to make their way out.

Finally, I turned back to my car without a word.  I popped open the back of my van and reached in for Chloe’s pink wheelchair.  I hefted it out of the back of the van.  I closed the hatch and wheeled the chair around to the side of the van to get Chloe.  At some point, the woman silently drove off.

Yes, dear woman, be glad I am a woman of self-control.  Be glad that I was struck a little bit speechless in my anger.  Be  glad that I kept my words inside this morning.

Hoping for a Bed!

Well, if you’ve been reading long, you know we’ve been in the midst of sleep issues and bed fiascos for quite some time.  If you’re new around here, you can read about our saga here, here, here, here, and here.

Chloe takes forever to fall asleep — literally hours.  And she completely lacks judgement about wandering in the night.  It is not unusual for her to wander right out the front door or into the garage.  It is not unusual for her to get into trouble — silent trouble — while the rest of us sleep on.  We have tried to keep her contained for years for her safety.

Every couple of years, I take a chunk of time and attempt to train her to stay put in her bed.  But each time I have realized that she just isn’t trainable in that yet.  I experienced that disappointment again this summer as I tried to train her to stay in her bed and to go to sleep when we say, “Goodnight!”

But no.  I was unsuccessful again.  I ended up hugely sleep deprived and no closer to having Chloe trained to stay safely in bed.

So our new plan is to try to get a new bed.  A safe bed.  A bed that hopefully insurance and Medicaid will cover; however, it is not at all a guarantee that they will.  We have our eyes on Beds By George.  If insurance doesn’t pick it up, then it will be impossible to get the bed since our first quote from the company is over $10,000.  Yikes!  But we are keeping our fingers crossed and praying that it will be approved.  And maybe, just maybe by Christmastime, we’ll be pretty close to getting Chloe a nice new bed that will help her stay safe.

Chloe is also scheduled for a sleep study next week.  It is something that I’ve thought about doing for years, but other things have always been more of a priority so it’s been put on the back burner in the past.  But this summer after watching her fall asleep and listening to her fall asleep, I had some concerns again and finally called to schedule the sleep study.

The sleep study will show any seizure activity, sleep patterns, obstructive sleep apnea, how deeply she’s sleeping, patterns of relaxation . . . . all kinds of things.  The study could show us a whole lot and be really helpful and answer a lot of questions . . . or the study could show us absolutely nothing.  We’ll see.

I’ll let you know later about an update on Chloe’s sleep issues.

And the truth is, too, that Zippy should really have a sleep study done, too, probably.  But let’s just take this one at a time, shall we?

Meet the Teacher

Well, Meet the Teacher Night was a little bit brutal.

We went with Zippy to meet his 5th grade teachers. . .  at the school where Chloe attended with him last year. . . the same school that she is not allowed to attend this year.  Yeah, it was a tad brutal.

It felt completely wrong to be there meeting teachers and pretending to be excited about it when Chloe is not allowed within the walls.  The people who made the decision to change Chloe’s placement were there welcoming children back to school.  But I knew that they were not welcoming all the children back to school.  I knew that not everyone was invited back.

Chloe was sitting at home with Mimi so she didn’t have to be face-to-face with the discrimination.  I won’t (and don’t) always shield her from things like that.  She has to unfortunately get used to the fact that there will always be people who don’t want her around.  There will always be people who don’t invite her.  That’s life.  And she has to get used to that.  But tonight I opted not to put her through it.

I think the truth of the matter is that maybe I didn’t want to go through it myself.  The truth is that it hurts sometimes.  Would that I were the one who didn’t get invited.  That’s easier to stomach than Chloe not being invited.

When teachers or other parents asked about Chloe?  I just told them straight out, “They didn’t allow her to come back this year.”  The news was met with gasps and surprise.  The news was met with heads shaking in disbelief.  The news was hard to break every time someone asked.  But I will not sugarcoat what Chloe is going through and what she is facing.  People need to know the truth.  And our family is going to tell the truth.

We are disappointed but still determined.  We are shaken but not destroyed.  We are discriminated against but not shut down.

The next weeks will be difficult as we decide exactly what to do and what steps to take.  But the real truth is that the difficult times will not only last a few weeks.  The real truth is that the next years and the next decades will be difficult.  We are in it for the long haul, and unfortunately we have a long way to haul in our society as is.

 

We Are All Born “In”

I really have inclusion on the brain.  It is consuming nearly my every thought these days.

Our school district is refusing to allow Chloe to attend her home campus.  We are saddened and frustrated by their decision and plan to take the next steps of disagreeing with their decision.

But for now, you can read an excellent answer to the question:  What is Inclusion?

I am borrowing this article from this website.  Please visit their website for more excellent information.

 

What is Inclusion?
by Shafik Asante

In 1955 the story of a brave and tired woman named Rosa Parks was put in front of this country’s awareness. They say this woman had gotten tired, in fact, historically tired of being denied equality. She wanted to be included in society in a full way, something which was denied people labeled as “black” people! So Rosa Parks sat down on a bus in a section reserved for “white” people. When Rosa was told to go to “her place” at the back of the bus, she refused to move, was arrested, and history was challenged and changed. All of this happened because Rosa Parks was tired, historically tired of being excluded. She had sat down and thereby stood up for inclusion! Another powerful cry for “inclusion” is being heard today. This new cry is being raised by people with unrecognized abilities, (the so-called “disabled”). Many people whose abilities are regularly denied or ignored feel that society is not honoring the right to participate in society in a full way. Part of the call is for better accessibility, such as more wheelchair ramps, more signs and materials in braille, community living, etc. The Americans with Disabilities Act represents an attempt to hear the “inclusion” cry. However, much more needs to be done including a search for an acceptable definition and practice of inclusion. Across this country a definition of inclusion is offered. It is generally accepted that “Inclusion” means inviting those who have been historically locked out to “come in”. This well-intentioned meaning must be strengthened. A weakness of this definition is evident. Who has the authority or right to “invite” others in? And how did the “inviters” get in? Finally, who is doing the excluding? It is time we both recognize and accept that we are all born “in”! No one has the right to invite others in! It definitely becomes our responsibility as a society to remove all barriers which uphold exclusion since none of us have the authority to “invite” others “in”! So what is inclusion? Inclusion is recognizing our universal “oneness” and interdependence. Inclusion is recognizing that we are “one” even though we are not the “same”. The act of inclusion means fighting against exclusion and all of the social diseases exclusion gives birth to – i.e. racism, sexism, handicapism, etc. Fighting for inclusion also involves assuring that all support systems are available to those who need such support. Providing and maintaining support systems is a civic responsibility, not a favor. We were all born “in”. Society will immediately improve at the point we honor this truth!!

Shafik Asante is a former leader of New African Voices in Philadelphia, PA. He passed on in 1997.

That Stinks!

After a very tiring and stressful week, it doesn’t take much to push a mom over the edge.  But then again, this was a bit much . . . .

I haven’t mentioned our dog, Coco, in a while.  For one, I’m not sure he’s a keeper or not.  I mean, some days it is all I can do to feed and care for my children — much less take care of a dumb ol dog.  Ya know what I mean?

Well, Coco has continued — even after a year!– to pee and poop in the house and chew up every little thing in sight.  He drives me absolutely bonkers.  I’ve been close to pulling the plug on the whole dog thing several times, but this past week was a doozy.

The scene:  a very stressful and tiring week; a very exhausted and hormonal mama; late in the day — almost bedtime; even though the day had been trying, I had strictly stuck to Coco’s schedule attempting to keep the carpets free of messes.

Apparently when I sat down to watch a show with Elliot and Zippy, Coco pooped in the other room.  No one saw or smelled the poop.  It was time for Coco to go back in his crate so I put him there.

Shortly after that time, Chloe wandered into the poopy room and promptly stepped one of her bare feet right into the poop.  I’m guessing what happened then is that she sat down to try to get the poop off of her foot . . . at which time she sat in another poop.  Realizing she had sat in another poop, she must have scooted back to try to clean that up.  And so on, and so on, and so on.

All I know for sure is that when I walked in a few minutes later, Chloe and the entire room were covered in very smelly, smeary dog poop.

I screamed and grabbed some wipes, not really knowing what else to do.

Chloe was very frustrated with the mess (and probably disgusted with the smell that she couldn’t get away from!) and was kicking around.  Every time she touched me she left a doggy poop handprint.  I very quickly was gagging and crying and saying unkind things about the canine.

I promised to get rid of the dog as soon as I finished the clean-up.

I grabbed Chloe, stomped off to the bathroom and threw her in, scrubbing and gagging  . . . and scrubbing and crying  . . . and scrubbing and making promises of terrible things done to dogs.

When I had Chloe scrubbed up to my liking, I turned to scrubbing the carpet, still crying and gagging.  And promising to get rid of the dog before sunrise.

Communication

“She needs to learn to communicate,” the angry and closed-minded school officials repeated over and over.  “Until she decides communication is important, she will struggle.”  “She needs to gain communication.”  My and my friends’ attempts to convince them that she DOES communicate fell on deaf ears.

And then I return home to my kids.  I return home to my daughter who doesn’t communicate.

While playing in her room with Mimi the next day, Elliot came back and joined them.  Apparently Chloe was annoyed with his being there.

“Out!!” Chloe vocalized and signed with both hands.

Elliot, laughing at her strong feelings and demands, stood at the door, continuing to annoy her.

Chloe stood up, went to her bedroom door, gave Elliot a good shove, and slammed the door in his face.

Hmmmmm.  Too bad Chloe doesn’t communicate her feelings and needs.

Fiesta Texas

Entrance to Six Flags Fiesta Texas.

Image via Wikipedia

The next leg of our trip was in San Antonio.  We spent the better part of 2 days at Six Flags Fiesta Texas, where it is hot, hot, hot!

I think San Antonio was a good 10 degrees cooler than Fort Worth, but quite honestly, I’m never outside in the heat of the day in Fort Worth.  If I’m out in the heat at home, it’s only because I’m going to and from my car between air conditioned buildings.  Especially this summer, we have been cave dwellers, hardly emerging from the AC!

We have season passes to Six Flags so we got to go to Fiesta Texas for free!!  Paul even had free parking passes so we didn’t have to pay the $15 to park!  For 2 days, that would have been $30 of parking!  Both days, there was a handicapped parking space close to the entrance so we were all happy campers.

We sprayed each other with sunscreen and ventured off into the hot, exciting world of roller coasters and log rides.

And we were not disappointed!

A note on Six Flags and People with Disabilities:  Six Flags is a very disability-friendly park.  We learned this back in December when we first purchased our season passes.  If you visit the Hospitality or Guest Relations booth, you can get a Disability Pass (not sure if that’s what they call it) for your child with a disability.  This pass allows front of the line access to nearly every ride.  That’s huge!  The first man that told me about it said that they started it for children with autism who usually have a very hard time waiting in line to ride the rides.  With the Pass, you usually enter through the exit of the ride and check in with the attendant.  He/She will tell you when it’s your turn to ride.  Usually 4 people can go to the front of the line with the PassHolder.  We got passes for both Chloe and Zippy, and it was awesome!

Since it was so hot, Chloe and I watched as many air conditioned shows as we could.  There were not nearly enough of them!  But the shows were great.  Chloe loved the music and dancing.  And all the indoor theaters had wheelchair seating on the front row that was nearly always available.

A note for people sitting beside the wheelchair accessible seating:  If you don’t have anyone in your party who is sitting in a wheelchair and a mom and daughter come to sit in the wheelchair seating, you should MOVE so that the mom can actually sit next to her daughter!  I realize you got there early to secure your front row seats and that it seems unfair that someone who came in a few minutes later than you  get one of your seats, but there are maybe FOUR wheelchair seats in the entire theater.  You could’ve moved back ONE ROW for us!  I would’ve loved to sit beside my daughter for the show.  Come on, people, get a clue!

But seriously, Chloe and I loved the shows and loved the air conditioner!  When there were no shows, we hid out in restaurants for a while to cool off.

Zippy mostly hung out with Chloe and me because he can’t stand the heat, but a few times he ventured off with Elliot and Paul to ride some big kid rides.

Elliot was very brave and rode all of the big scary rides!  Paul was a trooper and rode all those big scary rides, too, and ended up with “roller coaster headache” both days!

We purchased the very expensive souvenir cups when we arrived at the park, but the first day you get to refill as many times as you want for FREE!  We refilled our cups lots of times.  And the rest of the season, you only pay $1 for each refill.  We more than got our money’s worth on the 2 cups we purchased!

The 2nd day, Chloe and Zippy were begging to go back to the hotel for hours.  I finally gave in and took them back to the hotel to rest, cool off, and watch cable!  Our hotel was just a few minutes from Six Flags so it was easy to run back up there and pick up the big boys later!

Enjoy our photos and videos from our 2 day stay at Six Flags Fiesta Texas!  🙂

Zippy was dying for something cold even before we got in the gate!!

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Beach Weekend

Each year, Paul’s family convenes in Port Aransas, TX for a weekend of family fun.  We play in the pool, frolic at the beach, eat lots of big yummy meals, and play with all the cousins!  This year there were 22 of us — 10 adults and 12 cousins!  What fun!

Sit back and enjoy a long slideshow!

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And a video of Chloe walking on the beach!

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