A Year in Review

December 29, 2010

2010 has been a year of successes, failures, relief, and frustrations. Here is a bit of the year in review:

All three shifts of Lauren’s caregivers are now filled with wonderful people that support and enrich her life. We have not been successful in hiring a substitute caregiver, and that is first on my to do list for the new year. I need to get this figured out before Lauren moves into her own home in order to ensure stability for her adult life.

We survived a hospital stay. Handicapped parking has not become any easier. And, we still do not have a provider for repairs, or a new, wheelchair. We now have Medicaid supplied diapers which are working out even better than the Depends we used for years.

Facebook has not been the link to friends and family for Lauren that I hoped it would be. I had started Lauren’s page right after I had hired a young, tech-savvy caregiver who I thought would be helping Lauren interact on Facebook. Unfortunately, she was not with us very long, so the task has fallen to me, and I just don’t have room in my schedule for one more task. Also, seriously, Lauren’s life is routine, without a lot of ups and downs, and I’d have a hard time coming up with something appropriate to share. In theory, it sounded like a good idea - in practice, not so much.

What has worked out are the audiobooks we introduced Lauren to. She continues to enjoy listening to books, and rather quickly, let us know her preference for adult fiction rather than children’s or teen books. The problem now is finding ones that are appropriate – no gruesome murders, scintillating and provocative scenes, or sci-fi.

The hands-down biggest development in this year is, of course, the plans for Lauren to move into her own home. We have hopes that careful planning and the support of caring people and sufficient funding will result in Lauren being able to begin an adult life that can be sustained indefinitely.  Unfortunately, we are entering the New Year under a cloud of uncertainty about Lauren’s new home. It will be constructed in a mobile home park, which we own, in a neighboring town. Any new unit being placed in the park needs a building permit. There are over 190 units in this park. We’ve gone through this process many, many times. Now,  there is a new zoning official who has denied our request for the permit. Even though our architect and engineer say that there are no grounds for the denial, we are at a standstill. We have to waste precious time appealing her decision – for no good reason.

We’re just exiting a season filled with Lifetime and Hallmark movies about towns pulling together to make a better life for their residents, about neighbor helping neighbor. I don’t understand why someone would try to make life even more difficult for a young woman like Lauren (not to mention the parents who have cared for her for twenty-five years) - for no good reason.  Isn't the new year ahead of us all filled with enough uncertainties and worries?  It is so unnecessary for people to deal with the frustrations in their own lives by making problems for someone else.

My most fervent wish for the new year is that people will simply be kind to each other.  We could all use a kinder, gentler world in which to live.  I hope your New Year is a happy and healthy one.

It's the Night Before Christmas

December 23, 2010

I'm reprinting my post from last Christmas Eve  - for two reasons.  One, I'm too tired to try and be clever enough to write a new one, and two, I really like this post.  Merry Christmas to all of you.  I hope your holiday is merry and bright...and most of all, blessed.

It’s the night before Christmas. The house is a sight.
Both parents are toiling, the staff’s off tonight.
No stockings are hung by the chimney with care,
a mouse in the attic ate through them last year.
Till Lauren is nestled all snug in her bed,
I will not be able to lay down my head.
I now check my list with a yawn and a moan.
I have much left to do, so I note with a groan.

Then out in the yard I hear something shatter,
A spiral tree fell is what is the matter.
Away to the window I fly like a flash,
pull open the blinds and another goes CRASH.
The drifts on the lawn all adorned with moonglow
show the remnants of light bulbs a glint on the snow.
Then what to my wondering eyes should appear,
the remaining survivors, two glowing fake deer.

With a little “Oh well.”, I go back in quick
before my nose freezes or I could get sick.
Just then I remember, I am solely to blame.
I didn’t buy diapers! Though that was my aim
when I stopped for the milk and the eggs at the store.
But my mind was elsewhere. I had wanted to roar
when that man took our spot, last handicap space.
Then he ran in the store, it was a disgrace.

We parked in Siberia on the store’s side.
Then windblown and cold we made it inside.
With long-legged stride I’d moved pretty quick
and the ramp on the van, thank God, didn’t stick.
The aisles so crowded were hard to get through.
A horn on the wheelchair would’ve helped us pursue
that green bag of diapers that we left behind
as we swerved and avoided our fellow mankind.

But back to the present, how it makes me blue,
there’s cooking and wrapping and laundry to do.
A shower for Lauren and quick dry her hair,
then lay out her clothes, something festive to wear.
Christmas Day is tomorrow. A party is planned.
There’ll be ribbon and paper where ever you stand.
I give her a snack and put her to bed.
Go to sleep, have sweet dreams, please lay down your head.

I speak no more words but get right back on task.
A thought crossed my mind. What more could I ask?
That maybe St. Nick will surprise me come morning
and along with those gifts ‘neath the tree without warning,
will be the green bag that I didn’t remember
and maybe some extra days for December!
So I could catch up on those things left undone,
and maybe, oh could there be, time for some fun?

He could bring us new stockings, a horn for her chair.
It would be funny, how people would stare!
Then rubbing my eyes while shaking my head,
I wondered, oh will I, tonight get to bed?
A jingle, a jangle, could Santa be near?
No, it is not Santa, its Lauren I hear.
I know if she could as I turn off her light,
she’d say Merry Christmas to all and good night.


Based on the original Twas the Night Before Christmas by Clement Clarke Moore.

Adult Truths

Someone sent me a list of “adult truths” the other day. I thought that by the twenty-first of December, you’re probably as in need of a laugh as I am – so I’m sharing them with you. I’ve contributed the first four myself. The rest – I have no idea where they came from. Enjoy.

You only hit green lights when you’re early and red ones when you’re running late.

Who designed a string of Christmas lights where the entire string goes out if only one bulb burns out?

The sink will clog, oven element will burn out, or the ice maker will die only on the morning of your big party.

The people we elect to “fix” things always seem to leave things more broken, difficult, or downright crazy, than when they started.

Nothing sucks more than that moment during an argument when you realize you're wrong.

I totally take back all those times I didn't want to nap when I was younger.

There is great need for a sarcasm font.

Map Quest really needs to start their directions on # 5. I'm pretty sure
I know how to get out of my neighborhood.

Obituaries would be a lot more interesting if they told you how the person died.

I can't remember the last time I wasn't at least kind of tired.

Bad decisions make good stories.

I'm always slightly terrified when I exit out of Word and it asks me if I want to save any changes to my ten-page technical report that I swear I did not make any changes to.

I disagree with Kay Jewelers. I would bet on any given Friday or Saturday night more kisses begin with Miller Lite than Kay.

Even under ideal conditions people have trouble locating their car keys in a pocket, finding their cell phone, and Pinning the Tail on the Donkey - but I'd bet everyone can find and push the snooze button from 3 feet away, in about 1.7 seconds, eyes closed, first time, every time.

The first testicular guard, the "Cup," was used in Hockey in 1874 and the first helmet was used in 1974. That means it only took 100 years for men to realize that their brain is also important.

Looking for the Magic

December 16, 2010

The other day my husband was watching a football game and lamenting his lack of Christmas spirit. I replied from my cocoon of gift bags, tissue paper, and ribbon, “Now how can Christmas not be a magical time of year for you? I do all of the planning, shopping, cooking, baking, Christmas carding, and decorating. Then...POOF! You have Christmas – just like magic, right?

Aren’t we all seeking that bit of....something, that turns this birthday celebration into the most special time of the year? Too often by the time Christmas Day arrives I’m just glad it’s almost over. The weeks leading up to the big day are filled with more of the “have to do’s” than the “want to do’s.” What if we weren’t pushed into the holiday by what we feel is expected of us? What if the cards don’t arrive by Christmas, or, better yet, what if we didn’t send them at all? What if we didn’t bake umpteen dozens of seven different kinds of cookies? A heresy, for sure! (My particular downfall) And, what if we just didn’t find, didn’t make, the time to find that trendy new electronic miracle that Joey just has to have. Would we be loved any less? Would we love ourselves any more?

It’s hard to find the peace of mind during this hectic time of year to pinpoint just what would make this season a blessed, renewing, warmth-filled highlight of our year. On my way to the mall yesterday (to finish up the last of my shopping), I was thinking about how differently Lauren experiences this time of year than most people do. She is not guilted into doing anything – anything at all. She covets no particular item. She doesn’t eat cookies. Instead, Christmas brings her the delight of twinkling lights, merry music to listen to, and a cozy blanket of laughter and conversation amongst people who love her, as they celebrate the season. Now, doesn’t that sound magical?

Priorities

December 14, 2010

The grounds of the local pet cemetery are decorated with many seasonal grave blankets in memory of treasured pets. The local “people” cemetery exhibits far fewer remembrances of those who have passed.
***
On a sunny Saturday afternoon the local dog park is busy, the parking lot almost full as pet owners cavort with their canine companions on the still green grass. The town park around the corner with ball fields and playground is completely empty...except for an elderly couple taking a walk.
***
The O List this holiday season suggests a handpainted picture of your friend’s dog on a lovely tray for $350 “destined to become an heirloom.”
***

I can’t help but wonder if our actions and our priorities send unvoiced messages to the representatives of our communities that make the policies that govern our lives. The New Year will bring much discussion about budgets and what will get cut, what needs to be done, and where our tax dollars should be spent. The more than 27,000 families in this state caring for loved ones with developmental disabilities have prioritized the needs of their children every day of their lives. They value the lives of their children when, often, others do not. They seek services based on the principles that families know best what their children need and that families cannot do it alone. They hope that someday their children will be respected members of their communities.
 
Priorities, values, principles, respect. Have the tenets of our communities somehow become warped? Have they forgotten what should be important in their lives? Maybe why they have forgotten is the better question.

A Bed for Lauren

December 7, 2010

I bet you thought you’d heard the end of the hospital bed saga. So did I! When they dragged it out of here in pieces, I was just glad to be done with the ridiculousness of it all. Who would imagine that a Durable Medical Equipment (DME) supplier wouldn’t be able to supply an appropriate bed and worst of all, would simply not care about it? Anyway, the other day, in one of the numerous email newsletters that arrive in my inbox, I found the perfect bed!

Beds by George is a company started by an Amish father of a child with disabilities. The site includes a wonderful letter by business owner, Aaron Clow, (I have no idea who George is) about his realization that not only his daughter but other children and adults could benefit from a well-made, functional, safe bed that looked normal – not institutional. He says, “.... I believe that families whose special need son or daughter just needs a little extra security in a bed should be able to be safe AND to get themselves into and out of a bed that looks like it belongs in a home, not an institution.” The site includes rational points about safety, quality, and aesthetics. You can select the wood, color of stain, design, and type of bed (plain, manual, electric). You can even have a saying or name carved in the headboard. Lovely.

The very same day I sent all the necessary information in for a quote. Within twenty-four hours I had a quote back on the bed. I had selected a basic bed without any special bells or whistles, carving or special finishes, and just a manual frame (head can be raised). Now bear in mind another line from Mr. Clow’s wonderful letter, “As with you, I’m sure, when you have a special needs child you end up not being able to find (or afford) all the adaptive products you need or would like to have.” Want to know how much Mr. Clow wants for the bed? $7,000! Yes, there are three zeros there.

After a little diatribe during which I remember using the words criminal, insane, and sad, I called a friend who makes beautiful, custom made furniture. So as not to influence him, I asked that he go on the site, look at the product, and tell me how much a bed like that was worth. He called me back the next day. He said the beds looked nice and that he figured the cost would probably be between $1,500 and $2,000 dollars. He was totally flabbergasted when I told him the price. He said that the wood in the bed probably cost about $400 dollars. I’m all for entrepreneurship and fair market value, but even if the materials in the bed cost $1,000, the labor and design (they’re a bit unrefined) would not be worth $6,000. Then there’s the incomprehensibility of a parent of a child with disabilities, or anyone come to think of it, actually thinking there are very many families that could afford to pay that much.

 Beds by George, not an answer, simply depressing.

Three Manuals

December 2, 2010

Last week I posted about trying to ensure that Lauren’s preferences and routines will be protected when she moves into her own home and I am not there to oversee them on a daily basis. I talked about the manuals I am developing and promised to tell you more this week. Three of the manuals will cover her food, her clothing, and her laundry.

Food

Lauren does not chew, so pretty much all of her food needs additional attention as in pureeing, mashing, etc. In order to cut down on preparation time, I prepare some of her meals ahead of time and freeze them. Not all foods or dishes can be processed to the necessary texture or consistency and still remain palatable. So, I prepare the things that I know will work, like stews, chicken and gravy, and baked ziti (made with pastina), and freeze them in individual portions. If I’m preparing something for dinner for my husband and I, that Lauren will also be eating, I make a bit extra and freeze a few meals as well. We also cook an entire bag of frozen vegetables, puree them, and freeze them in ice cube trays. That way there is always a variety of vegetables ready to just pop in the microwave for her dinner.

Lauren is rather particular about how she likes her eggs scrambled, how her sandwich is made, and can be picky about textures. You can imagine that if you have little control over what and when you eat and how it is prepared, the only power you have over that part of your life is to exhibit some type of behavior to communicate your preferences. So, Lauren has trained me in how, when, and what she will eat. Now, I need to communicate that information to the people who will care for her, so that they don’t experience difficulty in making sure that Lauren is properly fed, and she isn’t upset or frustrated with the meals being prepared for her.

Lauren’s Recipe Book – Divided into three sections – Breakfast, Lunch, and Dinner – this binder contains recipes and hints for preparing Lauren’s food just the way she likes. Whether it’s making the spreads for her sandwiches, pureeing her prunes to the right consistency, or mixing a little brown sugar into her squash, all of the information you need to cook for Lauren is in this book. I’m thinking about laminating the pages so that they don’t get dirty.

Clothing

All throughout her life, Lauren has been complimented on her appearance. I’ve always been a stickler about how she is dressed and groomed. She should be able to continue to maintain her appearance even if I'm not there to pick out her clothes. We all have our own ideas about what goes with what, what is acceptable to wear where, and what is appropriate for the weather that day. This manual will help Lauren's caregivers by establishing some parameters for Lauren’s attire that will not only protect her personal style but protect her health and comfort as well. I can’t imagine being too hot or uncomfortably cold and not being able to remove or add clothing myself. This binder will help caregivers easily get her dressed and put together for her activities and ensure that she presents herself in public in the same manner she always has.

Lauren’s Wardrobe – Bowing to New Jersey’s inconsistent and always changing weather, I’ve arranged this book by temperature instead of my original plan to arrange it by season. Since it can hit -15 or 60 degrees in January and 110 or 47 in August – I think this is the best approach. I’ve been taking pictures of outfits and listing the pieces included in the outfit. Those pictures will become the pages in the book. Caregivers can then just flip through the pages, pick an outfit, assemble the pieces, and dress Lauren.

Laundry

Have you noticed lately how much the fabrics that our clothes are made of have changed? I find that I can’t get through a load of laundry these days without stopping to read labels. Just to complicate matters, Lauren frequently receives gifts of clothing from friends in Europe where they use symbols, not words, on their care labels. I’m especially careful with Lauren’s pants and jeans. Although she’s only five foot three, she has really long legs. If I put her pants in the dryer and they shrink at all – they’ll be too short. Since she’s sitting all of the time, short pants are particularly not attractive. So, I don’t put her pants in the dryer. But, I hate wrinkles – so I usually pop them in the dryer for a quick tumble in the warm air to get rid of the wrinkles and then hang them on a rack. Everybody has their own way of doing things, this binder will make the care of Lauren’s clothes consistent across caregivers and also make the chore easier for them.

Lauren’s Laundry – Pictures of any of Lauren’s clothing that needs special care are in this binder. Anyone involved in doing her laundry can familiarize themselves with the garments that need special care –hand wash, dry flat, turn inside out, etc. They can then refer back to the binder which is divided into sections – tops, bottoms, other – as needed.


This all may sound like a lot of work but I think it will be extremely helpful in the long run.  I have six months to put the binders together.  A few minutes here, a few there, and they will be complete.  The recipe book is pretty much complete and, even though Lauren is still at home, her caregivers are starting to find it helpful already.  If I was Martha Stewart, I'd say - It's a good thing!