Archive for January, 2012

Prayers for Dad

Hi.

I told Paul this morning that all of you were probably going to be mad at me and never read my blog again since I left the bed tent saga update story untold today.

Please forgive me.

And please come back.  Please don’t stop reading my blog.  😉

My daddy is in the hospital with a hemmorhage in his brain — a “brain bleed.”  And I’ve spent the last two days up at the hospital with him.

Please pray for him if you think about it.

And I promise I will get the rest of the story out soon!!

Thanks for your patience!

–Kelly

The Bed Tent Saga — Update Part Two

Continued from yesterday . . .  You know, I was belly-aching about how terribly our attempts to keep Chloe safe at night have failed over the years.  I may not have mentioned the hundreds of dollars we’ve spent on this whole endeavor. . . whine, whine, whine.  But then I left you hangin’ with a big ol’ tease??  Remember??  About our exciting discovery and solution for keeping Chloe safe and in her bed??  Ahhh, yes, so you do remember!  🙂

Well, . . . one day not very long ago, I received a comment on my blog.  The comment was from a mom who had the same struggles that I was having.  The comment asked if I had ever heard of a particular bed tent.  And this mom wanted to know if I had heard of this company because she wanted to know about it before they bought it.  And I was shocked when she included a link to a bed that I had never heard of.

Now, let me assure you . . . I have done lots of homework and lots of research on beds for children with disabilities, but I had somehow missed this one.  I immediately clicked on the link, and I immediately fell in love with what I saw!  The bed was amazing! I think I said outloud in my empty house, “I am ordering this TODAY!”

But then I saw the price, and my heart sank.  The price was steep — really steep.  I’ve bought enough of these types of bed tents to know that they are not at all worth that high price.  I realize maybe there’s going to be an exception now and then . . . but so far they’ve all been quite disappointing.  I was very disappointed in the high price and just tried to think about something else.

But I couldn’t get the bed out of my mind.  It really looked awesome.  And from the photos, it looked like it was a decent quality bed tent.  And I was a desperate mama.  And I looked at the link a few more times.  And then I looked at it a few more times.  As soon as Paul got home, I showed him the link.  He was equally as excited to see something that looked so great.  But he was equally skeptical about the high price.  <sigh>

But we couldn’t get the bedtent out of our minds.  It really looked awesome.  So I decided to contact the company and have a conversation about the quality and see if I could get any vibes.

And that’s just what I did!  I called and emailed (don’t remember what I did first) expressing interest in the bed and wanting to talk to someone about it.  I think it was the same day that I heard back from Rose, the owner of the company.  Impressive and fast!

Rose was darling.  She is the mom of a child with a disability who was faced with the same issues we were facing.  But she had an idea and she had a friend who had some great skill and some quality materials.  And this friend agreed to make a bed for Rose’s son several years ago.  I won’t attempt to tell the company’s story here (since you can read about it on their website later), but what happened is that Rose’s friend made a great bed that kept her son safe at night.  And knowing what a common problem this is for families in the disability community, Rose decided to make more beds and start her own company to do so.

Rose talked about the quality of the bed. . . and it sounded awesome!  I complained about the flimsy mesh of the other products I’ve tried, and she completely understood my concerns.  She explained that the first mesh product they used was the mesh that is used on those big ol bounce houses.  I was impressed picturing that high-quality mesh.  But then she said that now they use a heavier-duty mesh than that — the mesh that they use on a tractor trailer to cover and protect his load.  Wow.  Now that’s heavy-duty mesh!  I was getting more and more excited the more she talked!!

Another amazing thing that Rose told me that day was that her son had one of the very first beds that they made several years ago — several years ago — and it wasn’t even made correctly; it was a prototype that wasn’t really even the right size for a twin mattress.  But that prototype??  Her son had been sleeping in it for several years.  Years.  Yes, I said years!!  What??  A safe sleep solution that is going to last years??!!  The cost was looking more and more reasonable all the time.

And Paul and I were beside ourselves excited!  And we had. to. have. one.

To be continued . . .

(If the suspense is too much for you, check out http://thesafetysleeper.com/.  Be forewarned:  you will fall in love! Be sure to let Rose know that I sent you.  And check back here tomorrow for the rest of the story.)

The Bed Tent Saga — Update

This bed tent saga has been going on now for years . . . .  It is the challenge of trying to keep Chloe safely in her bed all night.  It often takes Chloe hours to fall asleep, and sometimes she awakens in the night and stays awake for hours.  She doesn’t have judgement for what are good choices and what are bad choices.  She doesn’t fear danger and doesn’t seem to care much for what’s safe or not safe.  When she is awake and milling about, she is silent so we usually don’t even know she’s on the move.  She has been known to wander out of her room . . . out of the house . . . .  And we have struggled for years on how to keep her safely contained during the night.

Our story has included several tents, several constructed bed-things, lots of duct tape and caribiners, broken zippers, ripped mesh liners . . . I could go on and on trying to catch you up on our saga.  The photo below of all the tents . . . ummm, yeah, I think we’ve tried about that many . . .

Tents at the camping site at the Lowlands fest...

Image via Wikipedia

And this whole bed tent / special needs bed / safe sleep for children with disabilities has remained the number one way that people find my blog.  It is a huge need in the disability community.  And in the past years, our options have been few.

I have not kept you updated on our bedtent saga lately because I was not at all excited about where it was and where it was headed.  Everything we have continued to try has failed miserably.  My precious girl has continued to get out of her bed, have a little party in her room, and get very little sleep.  Very. little. sleep.

Very little sleep doesn’t make for a good day at school.  Just sayin’.

I, too, have continued to lose sleep from checking on her numerous times each night and worrying about her every night.  Paul and I and our sitters have continued to try creative ways to keep Chloe safe at night.  But most nights we have failed miserably, and Chloe has gotten out and proceeded to party as mentioned above.

Thankfully, most of her middle-of-the-night parties have stayed in her room lately, which has not always been the case.  Safety has not at all been guaranteed.  And that really affects a mama’s sleep!

And very little sleep doesn’t make for a good day for a mama either.  Just sayin’.

We repaired the Nickel Bed Tent over and over and over.  The flimsy mesh of the tent continued to just rip to shreds.  I had to sew a piece of fabric over the door after Chloe completely ripped it up.  And when she tore that up, I finally had to cover the whole door in duct tape.  (I didn’t take photos of any of this because I was NOT having fun and wasn’t in the mood to talk about it.  Sorry.)  The zippers continued to break . . . .  Paul kept fixing them and rigging them.  But finally we admitted that it was time to put the Nickel to rest for good.

But now what?

Well, Paul bought a little 2 man camping tent from Walmart, and we put Chloe’s mattress on the floor of the tent.  This worked for a while.  I was never wild about the arrangement since camping tents are mostly canvas (or whatever that material is) with mesh only on the windows and doors for the most part.  I didn’t like the lack of ventilation — I was always worried that she would be hot in the tent.  Also, most nights instead of sleeping on her soft mattress, Chloe would sleep on the plasticky canvas by the door of the tent beside her mattress!  It drove me bananas.  Every night I would remind her to stay up on the soft mattress. . . . Ugh.  I did not like using the camping tent at all.  I didn’t feel that it was a very safe option for Chloe.  And the zipper broke before too long, and we found ourselves having to rig the thing up every night, hoping that the tent would contain her and keep her safe.  But most nights it did not.  She escaped and escaped and escaped.

It is very difficult to relax and sleep when you are not sure that your daughter is safe.  Don’t know if you’ve ever experienced that or not, but trust me on this one.

Knowing that so many of you experience the same. exact. scenario. every. night, I really wished I could come up with a wonderful and safe solution for our children.  But each night that Paul and I were defeated in our struggle, it got more and more frustrating.  And it is simply a terrible feeling  not being able to ensure your child’s safety.

OH, but friends!!

I have some news for you!!  For a week now, we have put Chloe to bed and then turned and walked out of her room, knowing without a doubt that she was going to be right there safe in her bed when we woke up in the morning.  For an entire week, I have not checked on her one time!  Not once!  I seriously cannot ever remember going even a night without checking on her multiple times!  I am excited to share the news with you about what we discovered!

(But if I told you about itnow, this post would be TOO LONG!  So you have to come back here and read about it tomorrow.  And I will try to be patient and not spill the beans before then!)

Wearing Our Hearts on our Sleeves!

On our short sleeves!  It is going to be nearly 80 degrees today in Dallas/Fort Worth!!  Now THAT’S WINTER!!  😉  Love it!

We are helping to spread the word about acceptance today – International Day of Acceptance.  Here are a few photos.

This from 3E Love today on International Day of Acceptance:

**Help us spread the word! Please forward this email to your friends and family. Ask them to do the same.

INTERNATIONAL DAY OF ACCEPTANCE – January 20, 2012
To achieve social acceptance of disability.
To honor the late Annie Hopkins, founder of 3E Love and creator of the International Symbol of Acceptance.

3E Love is a social entrepreneurial awareness experiment.

Join the Movement at
http://www.dayofacceptance.com

What is Acceptance?
Acceptance is an Empowered movement that Educates others to Embrace diversity and Love life by seeing beyond abilities.

Friends, tell the world you embrace who you are; a person with social rights, who has an opinion, who has interests, who has goals and who loves life; a person who is empowered to make a difference in the world and not be without a voice in society. You are not living disabled, you are living.

To our supporters, join us in telling the world that you are accepting of people with disabilities. As our parents, siblings, relatives, spouses, children, lovers, coworkers, teachers, personal assistants, friends, and anyone else – you also have a role in our culture and life. And you can have an impact on the future if you demonstrate your acceptance to others.

Let’s join together to:
Embrace diversity. Educate your community. Empower each other. Love life.

Start the conversation of acceptance TODAY!

Help promote social acceptance of disability today on January 20th:

  • Forward this e-mail to your friends, family, and professional networks.
  • Share the message on Facebook. Change your profile pic for just 1 day!
  • Tweet about it! #dayofacceptance
  • Wear your heart on your sleeve or draw it on your hand!

When a person asks about the symbol, “What’s that mean?” Well now it’s your turn to tell them your story!

And maybe next time they will look at the traditional symbol a little differently.

For more information about January 20th and how you can join the movement, visit http://3elove.com


International Day of Acceptance

I am bogged down with emotion as I prepare for another meeting with Chloe’s school today. My heart, my resolve, and my brain are all very tired and stretched thin. I would love your prayers today if you think about us.

Today, January 20th, is International Day of Acceptance. I was going to attempt to write a wonderful post about what this day means to me and to my family this year. But, as I said, I’m a little emotionally-spent right at the moment.  But in re-reading my post from last year, I have to concur that that is what International Day of Acceptance means to us.  You can reread it here.  🙂

We all have our Wheelchair Heart t-shirts to wear today — even my dad has one to wear this year!

Today we are celebrating and embracing Zachary just the way he is … for it is his disabilities that make him who he is  … that make US what WE are.  And the more I can educate the people around us on his hidden disabilities, the more he will be accepted and embraced and empowered.  Really.

Today we celebrate Chloe just the way she is. . . for it is her disabilities that make her who she is.  She is a strong girl with a perseverance that just won’t stop.  She has a tender heart that has room to love a million more.  And the more I can educate the people around her the more she can live her life to the fullest without being held back or pitied.  For it is pity that will slam on the brakes to her success.

I wear my t-shirt proudly today.  I’m very proud to have Zach and Chloe in my life.  I’m very proud to be a part of the disability community.  I’m very proud to have many friends who live life with a disability.

Educate. Embrace. Empower.

(Again, read last year’s post here.)

Bummer . . . Fail!

Well, I have admitted here before that I’m not real big on making New Year’s Resolutions.  I don’t make them, and I don’t keep them.  I guess probably the whole truth is that I don’t make them because I don’t keep them.  It’s painful to fail at a new committment over and over and over and again.  So I finally just stopped making them.

I did, of course, choose a word for this year.  DELIGHT.  And wrapped up in that word are certainly implied resolutions — things I will aim to do differently, things I will try to approach differently, things I will try to relate to differently or interact with differently or respond to differently.  So my word for 2012 is a resolution — or even a list of resolutions, really.  But for the most part, I have just stopped making New Year’s Resolutions.

Every now and then, however, I decide to make a resolution or two.  This year I made 3.  But I didn’t tell anyone.  So they didn’t really count.  They were certainly unofficial since they weren’t written down anywhere nor were they spoken aloud.  But I sorta kinda made 3 New Year’s Resolutions in my head . . . to myself. 

And I’ve broken all 3 like crazy.  For that matter, I’ve done a lousy job on my word for the year, too.  See, that’s why I don’t play that game.

1.  DELIGHT.  Result: Fail.  Explanation: I started the year by hurting my back and spent the first week and a half of the year on the couch in pain, worthless.  It was difficult to delight in anything.  Since finally getting up and getting things back under control, I’ve been too wrapped up in trying to get things back under control to delight in anything.  I’ve been tired and grumpy.  I’ve been busy and overworked.  And I haven’t been delighting in the 4 favorite people in my life.  But today’s a new day.  I will delight in them today!  I have scheduled coffee with a friend, and I will delight in her friendship and try this whole Word of the Year thing again.

2.  No Dr. Pepper for a year.  Result: Fail.  Explanation: Really the goal was no soda, no pop, no soda pop, no Coke . . . however in the world you say it . . . for a year.  365 days.  No big deal.  I’ve done it before, and I can easily do it again.  And I succeeded at first.  I was doing really well . . . . but by the time January 2nd rolled around, I caved.  Yes!  I only lasted a day and a half.  Pathetic.

3.  Use only 1 space after a period. Result: Fail. Explanation: I recently learned that the rules have changed. Now instead of putting 2 spaces after a period when we type, apparently we are supposed to only put 1. It was my goal to switch to this new grammatical rule . . . since I am an English major!! But I have found it is quite difficult for this old dog to learn a new trick. It is especially tricky for this old dog to learn a new trick that she doesn’t like. This paragraph is following the rule of only one space, and I don’t like it a bit. I think I find comfort in the “airy-ness” of 2 spaces after a period. So I’ve failed at this unofficial resolution, too. There is still hope that I will catch on and begin to follow this rule, but it will be a tough one, to be sure.

4.  Publish at least 3 blog posts every week of the year.  I failed at that already, too.  When I realized on Sunday night that a week was just passing by with no post, I nearly sat down and posted 3 random things that night just to say I didn’t fail.  But I didn’t.  A week went by with no post.  Bummer.

But thankfully each day is a new day!  And God’s mercies are new every morning!  I can start anew with whatever I want to start anew with!

I’m not sure if I will try to  restart any of the above resolutions.  I will for sure keep my Word of the Year.  That’s a biggie, and I knew it would be a process anyway.  Learning to delight even in the midst of crummy circumstances is certainly a process.

So today, I’m choosing to delight in new beginnings.  I don’t have to wait for January 1st to roll around again.  I can start anew today!

There!  I just did!  🙂

Just Like Thumper

As many of you know, my absence and silence is usually a sign that things are a-brewin’ and I am struggling with what to say and what not to say.  Yes, I apologize that that’s the reason for my silence again.

We are having meeting after meeting after meeting with Chloe’s school, and we are not making the progress that I wish we were making.  It is very disappointing, very troubling, and very all-consuming.

I do have some other things to blog about — some things to catch you up on.  But I keep getting stuck on the yuckiness that is going on at Chloe’s school right now.  And, quite frankly, I’ve taken Thumper’s advice . . . as Thumper quotes his daddy’s great wisdom:

 

I am hoping to be back real soon and just talk about something else . . .  😉

Well Done!

Sometimes I think I can talk all day . . . write a dozen posts . . . scream from the mountaintops . . . write letters . . . over and over and over trying to explain the life we want for Chloe — the life that we think Chloe wants for herself.  Oftentimes my words fall on deaf ears (figuratively speaking).  Oftentimes my words fall on non-understanding ears.  Oftentimes my words fall to the ground because the hearer doesn’t want to hear or understand.  Oftentimes my words are given a sympathetic grin and pushed aside as a sweet mama in denial speaking non-sense.

And then I see a video that a precious mama made this week for her 2 year old daughter who has Down Syndrome.  The video is powerful — I cried and cried with the power and the truth.  At the time I am posting this, this video has only been viewed 301 times.  I’m hoping many more people see it.  I’m hoping that lots of the people who see it will be changed by it.  I’m hoping that through this video more people will understand the civil rights issue that our family and other families are fighting for.

Well done, sweet Mama!  I am sending my friends to watch your video:

To Have or Not To Have

To Have or Not to Have . . . That is the question.

After Paul and I had been married for several years, it was the natural conversation to have:  so . . . wanna have kids?

Growing up, my number one life goal and plan was to be a wife and a mom.  It was all I wanted to be.  Yeah, I wanted to be a teacher, too, but it was certainly secondary.  In fact, I’m not sure I decided to be a teacher until I was in college and had to come up with something to do with my life.

When Paul and I began to have those thoughts and conversations of whether or not to have children, we both were a bit surprised at our answer.  No. 

We decided that NO we weren’t going to have children.  It’s not that we didn’t like children because we did.  It’s not that we were scared or nervous or weirded out because we weren’t.  Our decision to NOT have children was a very logical — oddly unemotional — decision.

You see, as we thought of WHY to have children, we could only come up with selfish answers.  –To have someone to care for me when I’m old.  –To enjoy their cuteness.  –To create a mini-ME.  –To pass on the things that are important to me.  (These aren’t really the reasons that we listed, but you get the idea. . . . they all seemed like selfish answers.)

One day Paul and I were visiting with a college friend — a single guy who was off being successful in his career.  Probably he had had no thoughts of the pros and cons of having children.  Paul explained our predicament and decision to our friend.  Without hesitation, this friend corrected us, shocked that we had come to that conclusion at all.

He explained that having children was the most –absolutely most — selfless thing a person could do.  To put everything in your life aside in order to raise a child was the greatest act of selflessness he could imagine.  To give of your  finances in order to provide for your child.  To give of your time and your plan in order to accomodate and nuture a child.  Having children is a total redo of your priorities in order to raise that child.

Our friend added some more good points to his argument.  The Bible teaches us to procreate . . . to have children. . . . to fill the earth.  He explained that it is pretty clear that the plan is for couples to have children.  If we decide NOT to have children, then we need to have a reason not to — not the other way around.  It’s not up to us to find a reason to have children.  God has told us to do so, and the act of having and raising children is not selfish.  period.

And that was that.  We decided right there on the spot that we would have children after all.  Granted, it was still several years away since we had some fertility issues, but we decided that day to have children.

And today we have 3.   And I am focusing this year on delighting in them.  They do delight me.  I just sometimes am too busy to stop and enjoy them and delight in them. 

Delight in 2012

Annie’s Coming Out (the book)

Annie's Coming OutI recently read the book Annie’s Coming Out and was challenged and educated and stirred. The book is about a young girl, Annie who was born in Australia in the mid ’60s, diagnosed with cerebral palsy/athetosis, and sentenced to a life in an institution for mentally retarded children.

To think how recently ago children with less-than-perfect bodies were nearly-across-the-board placed in institutions is harrowing. I know that there were still a few families that chose to keep their children at home, but most saw institutionalization as their only option. Most were told by doctors that the child would be better off in an institution. Once dropped off at the door of the institution, a lot of the children never saw their families again. Some only saw their families once or twice a year.

The book Annie’s Coming Out paints a pretty nasty picture of life in an institution — cruel treatment; starvation; no stimulation; no conversation; no touch; no music or toys; nurses and caregivers who didn’t care or understand; tiny, helpless lives stuck in a void and an emptiness and a cruelty by a bureaucracy and society that is blind to their own repulsive actions.

While our society today is not as quick to drop off a child with different abilities in an institution, it is a practice that still occurs certainly.  And I have heard that perhaps the living conditions in these institutions has not made a ton of improvement.  It is a sobering thought.

Thankfully for Annie and several other children who had spent their lives in the institution, a wonderful teacher came along and believed in stimulating them.  Rose, the gifted teacher, admits that she had no idea of how bright the children were before she started teaching them, but she saw it more as a right that they had to be spoken to and stimulated.

What follows is an amazing story of unlocking the communication of a few of these children.  These children who had never in their lives been able to communicate with another person were finally supported enough to be able to communicate to Rose.  What she learned was that some of these so-called mentally retarded children were extremely bright, able to learn to read and do complicated math and understand politics and law!

The power of communication is a great emphasis of the book.  For it is communication that made the difference for these children.  Communication brought life to them . . .  brought purpose for them . . . brought the ability to dream to them.

Rose’s efforts with and on behalf of the children were far from supported by the bureaucracy and the governmental authorities.  Society was so set on pushing these seemingly worthless children aside that they could not begin to accept the fact that they were perhaps intelligent beings.  Everyone in authority tried to shut Rose down and keep her from educating and communicating with these children.

Through the book, Rose grows close to Annie and to a couple of the other children.  She takes a couple of the children home for the weekends and exposes them to real life outside the bland walls of the institution for the first time in their lives.

And the second half or so of the book is the story of Annie’s legal battle to become free.  Annie wants more than anything to be free from the institution.  She endures much hardship and several court battles to basically earn the right to be human — the right to live her own life and to make decisions for herself.

The book is a pretty easy read, only about 250 pages.  And it is certainly eye-opening and telling.  I recommend it to anyone who loves or is interested in supporting someone with intellectual or physical disabilities.  You can find the book at Amazon.com here, but it is not really a widely-available book.

The book was later made into a movie.  Paul and I will watch it in the next couple of weeks and will let you know our thoughts on it.  Let me know in the comments if you read Annie’s Coming Out!

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