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?


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.


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.


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.


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! 

No Rest in Dreams

November 30, 2010

Groggy with sleep, unwilling to disturb my cocoon of blankets even to reach out and turn off the alarm, I lay replaying the dream from which I have just awoken. Dreams are ephemeral. I often struggle to grasp the last wisps of them as sleep drains out of my brain and the reality of the day enters. This morning, for some reason, the dream has stayed with me.

Dreams are, so frequently, just bizarre. Hidden meanings lurk in their depths I’m sure, but how do you attempt to decipher the meaning of elephants blocking a bridge, flying sans airplane, or even years after high school, a struggle to open your locker. Sometimes though, it is all too obvious that a dream is a well-designed metaphor for thoughts that have been lurking in the convolutions of your brain.

In my dream this morning, my husband and I were going to go to a restaurant located on a city street. When we got there, all of the parking spaces on the street were open. The entire street was empty. Yet, we couldn’t find the right parking space - first parking here, then there, or maybe it’s better over there. When we got inside the restaurant, steps and stairways led to all of the dining spaces and we wandered around looking for a ramp. We eventually found one, hidden behind a wall. The dining room was empty, but we couldn’t seem to find the right table, changing our minds several times about where to sit. Why was everything so difficult? Why did all of our choices seem so important? Lauren wasn’t with us....but her wheelchair was  We needed to manage its limitations, make room for it, care for it. Its presence guided our decisions and our actions.

In my dream the wheelchair represented the stress, fear, and worry that are the constant companions of a parent of a child with severe, multiple disabilities.  Lately, I have been thinking about the independence that Lauren having her own home may offer both her and I.  However, my constant companions will always be there.  Neither of us will ever be free to cut the cord that is wrapped around both of our lives forever.  She is my sweet, beautiful angel of a child yet sometimes it feels as though that cord will strangle me.  I get so tired, so very tired of my constant companions that I want to stamp my feet and say, “I just don’t want to do this anymore!”  But that is not an option.  When I grasp for perspective I know that compared to many, many families, we are actually in a very good position – Lauren has services, we can afford to provide her with the things that they do not cover, and we have good people supporting us.  Sometimes, though, I just want to be selfish.  I want to let go of the cord, even if just for awhile....and rest, sleep.  But sleep is full of dreams, and even in my dreams, my constant companions find a way to remind me that they are never very far away.

Thanksgiving 2010

November 25, 2010

All this week I’ve been thinking about what I wanted to write for today – Thanksgiving Day. Thanksgiving and New Year’s are probably the only holidays throughout the year that call not only for celebration, but for reflection (OK, I guess you could include your birthday, but technically, and more so as you get older, it’s not a holiday). I went back and read what I had written last year. I found that much had stayed the same and, one thing had changed significantly. I am sure that if someone had told me that on Thanksgiving 2010 I would be six months from Lauren moving in to her own home, I would not have believed them. It could not be possible!

Too often I forget that life is as full of possibilities as improbabilities. Naysayers and pessimists bombard us daily, about seemingly every facet of our lives, until we feel that we are drowning in doom. Yet, who could have predicted even ten years ago, that we would be reading books from plastic screens, that reality shows would prove that real life truly is stranger than fiction, or that airport screenings would become so invasive that someone would need to invent special underwear to protect personal privacy (a fig leaf design for men, a clasped hands design for women). Who knew?

So today I will give thanks for many of the same wonderful things as last year, but I will be most thankful that Lauren will be settling into her own home in the coming year, with devoted caregivers, in a community to which she is already connected. I am amazed that a tiny seed of an idea blossomed so quickly and beautifully into the answer to Lauren’s need for a home of her own. The worry, the despair, about Lauren’s future, has so colored my days for so long that I am astounded at how much my own life and outlook is changing now. And, I have learned a valuable lesson about staying open to the possibilities, rather than letting improbability enclose my reality.

Lauren - Having it Her Way

November 23, 2010

When a person can’t speak or doesn’t communicate to any great degree in an alternate form, people frequently assume that they must think, feel, or prefer what they do themselves.  Without guidance or stated preferences, we often instill our own likes, dislikes, desires, and inclinations onto the non-expressive person.  You can imagine that when you have three, four, even five or more people providing care for you that this can be not only aggravating to the care recipient, but confusing as well.

Now that Lauren will soon be living in her own home, I have become concerned about protecting her preferences and routines when I will no longer be there to oversee them on a daily basis. As much as I want her to have the opportunity to explore new things and experience variety in her life, she must have the right to a basic routine, personal style, and food preferences. Sure, the acquisition of these preferences in Lauren’s life have, to some extent, developed from my own preferences – it’s a mother’s prerogative. But many of them are also part of Lauren’s world because of the culture of our family. Every family has their own ways of doing things – family traits – so to speak. We like a neat, uncluttered home. We eat our fresh, unprocessed, unboxed, meals on a basic schedule. We don’t turn our outdoor Christmas lights on till Thanksgiving night. We recycle. This is how we’ve chosen to live. Lauren has the right to continue our traditions and way of life in her own home, as well as have her personal opinions and preferences respected.

So how do I make that happen for her? How do I attempt to guarantee that her voice is heard when she has such a limited ability to express herself to her caregivers? Manuals – I’m developing manuals. They will cover a variety of subjects including her food, her clothes, and her personal care. I am hoping they will be informative, succinct, offer guidance, and be easy to use. And, I’m hoping that they will speak for Lauren in a manner that will guarantee that her quality and style of life will be protected.

Next week, I’ll go into exactly which manuals I’m writing and what they will cover.

Wishing for a Good Life

November 18, 2010

After thirty years of marriage, dinner conversation is no longer as lively as it used to be when we were still exploring the wonders of each other. It now revolves around Lauren, frustrations and problems, and the things we need to do but still haven’t gotten around to. The evening news is usually droning on in the background, creating another layer of issues and concerns about the world in general. So, when we have a “date night” my husband and I try to stick to subjects that are more positive, more about ourselves than everyone and everything else. That means that long silences often threaten as we rack our brains for anything scintillating or interesting to discuss. The other night, in desperation, I pulled out the tried and true, “If you had three wishes – what would they be?” For both of us, one of our wishes was that Lauren be happy and well cared for - for the rest of her life. I soon realized that neither one of us had said, “I wish Lauren wasn’t disabled.” Neither one of us had said, “I wish Lauren could speak, or walk, or didn’t have seizures, or anything else.” We simply wanted Lauren to live a good life.

Over the years, it seems that the professional, and not so professional, individuals involved in Lauren’s life either wanted to “fix” Lauren or marginalize her. Very few people in general, approach her, respect her, as simply who she is – challenges and all – a part of their world. If she doesn’t respond typically to them, if she doesn’t meet some kind of norm, she is dismissed. If she could not learn what she needed to learn in her first twenty-one years, then it is determined, that she never will.

But we all are a work in progress. No one on this earth is perfect. Very few couldn’t stand some degree of improvement throughout their lives. Yet, there seems to be some imaginary line beyond which people are judged too wanting, too imperfect to be considered a part of the mainstream of society and are subject to different rules.

I guess if I ever meet the magic genie who will make those three wishes come true, one of my wishes should be, “I wish the world would respect and value Lauren for who she is. ‘ Only then will the world be a place, where she can live a good life.

Goodbye to the Hospital Bed

November 16, 2010

I promise, this is the last of this saga. The hospital bed is no longer in Lauren’s room. Why? I gave up. After two weeks and three phone calls trying to find out the status of the bed rails that the supplier was supposed to be getting us, I called and said, "Come pick up the bed”. Suddenly, the gentleman who was supposed to have called me was - saints be praised - available! He proceeded to tell me that he had to order the split rail…. but they really don’t make a split rail for a “homecare” bed. Ok, which is it? How can you order something that you can’t get?? He said that he’s really never tried to supply a bed to someone who was small enough to roll out from under a standard bed rail. I said, “What do you supply for pediatric patients.” A crib. “You’d supply a crib for a twelve year old?” No answer. Well, Lauren used a split rail bed when she was in pediatrics in the hospital in June. When I told him that he said, “That must have been a specially made bed.” Oh, give me a break! I’m sure hospitals are having custom beds made all the time, don’t you?

About this time I realized that I was fighting a losing battle. This guy (you’ll notice that I’m no longer calling him “gentleman”) had no idea what he was doing. And worse yet, he really didn’t care. They picked up the bed later that day. Now, I’m exploring wedges and other options that will enable us to provide Lauren with position adjustments when needed.

Diaper/Hospital Bed Update - Part Two

November 11, 2010

I had to share this with you. I finally got a call back on the diaper inserts (still no call on the bed). The gentleman that called said, “There is no Medicaid code for inserts, I can’t find one anywhere. You know I don’t make any money on these. I end up doing this at cost.” I asked him how he knew that if he didn’t have a code and thus would not know what his reimbursement would be. He quickly changed the subject to, “This is the last diaper order I’m taking, we can’t make any money on these. How are they working out?” I replied that they were just fine. “Oh, great. I’m glad they’re OK.”

Why does a supplier have to make you feel like they’re doing you a favor by allowing you to use their services? Lauren is entitled to diapers through her Medicaid coverage. If a company does not want to participate with Medicaid – hey, it’s a free country. But don’t give me attitude about providing a product you’ve committed to providing. I would love to pull the diaper order and the hospital bed order from this company and go elsewhere. I won’t for two reasons. One, I’d have to go through the prescription and approval process all over again probably, and I really don’t have any hope that another company would be any more willing, or any more helpful, in meeting Lauren’s needs. Our experience to date with this type of supplier is all negative. - Just another of the roadblocks to enabling an individual with developmental disabilities to live her life in her community.

Diaper/Hospital Bed Update

November 9, 2010

Lauren finally received her first order of diapers and booster inserts last week. And.....they ordered liners (like a Poise pad) not inserts. I called the supplier and told them about the mistake which they promptly blamed on the prescription, and then realized that they had made the mistake. One week and another phone call inquiry from me later – we have no further updates and no inserts. When I called yesterday to inquire about the status of the order I was told that they were waiting for approval from Medicaid. When I reminded them that they already had the approval all I got was a “Oh, yeah. I’ll have to call you back.”  Did they?  No.

The hospital bed was delivered over a week ago. Using Lauren’s existing twin mattress on it seemed to work fine. The problem was that when the back was raised the distance between the bedrail and the mattress was a good twelve inches – not a safe situation. We need a split rail not a single rail. I called the supplier the same day and told them that the single rail would not be safe and we definitely needed the split rail. Since the initial order, they have seemed to have a very hard time grasping Lauren’s needs. They keep talking about my concern that she will “escape”. She’s not going to try to escape; she’s going to roll out of the bed. Once again I was told I’d receive a call back. We’ve had to work around this hospital bed that’s been sitting unused in her room for over a week now. I’m not going to attempt to transition her into a new bed until I’m sure that it’s going to be functional for her. When I called them yesterday I told them to either get back to me or come pick up the bed. Have I heard from them? No.

The Changing Seasons

November 2, 2010

A day of heavy rain last week has stripped the trees of their already short-lived leaves of red and gold. I find myself stopping, staring out windows as I walk through the house, trying to figure out what I’m seeing. Was that there before? It’s a rooftop formerly obscured by leaves, a large rock previously hidden by the bushes encircling it, a car passing on the road across the valley, its bright color now standing out against the brown, leaf strewn hills. We live in the middle of thirty acres of fields and woods. There is a view from every window that changes with the season. Now the barren trees portend the winter that is to come, yet their starkness also reveals sights that have been concealed by leaves since spring.

I am looking forward to spring more than ever this year. Lauren will move into her own home in May. It will be a huge change in her life....and in mine. Our journey to this point has reflected much of the very nature of the seasons we experience in the northeast. Lauren’s early years were our spring. Everything was new and fresh. A new child, a new diagnosis, new direction and trials in our lives, all struggling to rise above the surface like leaves pushing through the dense, snow-hardened earth. The summer was long. Those years of plodding, surviving through the battles to meet Lauren’s physical, medical, educational, and social needs were like the long, sun-scorched days of a particularly, hot, brutal summer. And now, even though she is still so young, it feels like fall is approaching. The leaves that have shrouded our view of what lies beyond the struggle have begun to fall away, and we have a clearer view of the future. The mass of green leaves has now given way to a vivid display of many shades and colors much like Lauren’s life seems to be expanding, ripening, maturing into something far richer than she’s ever known. I hope it is a long time before winter comes. I hope that we are building a life for her that will sustain her for many seasons to come.

A Really Long Night

November 2, 2010

I hope there is a nap in my future today. It wasn’t a good night last night. Lauren was having mood swings and was noticeably uncomfortable yesterday. It was my educated (the calendar seemed to indicate) guess that she probably had cramps. Those of us who have dealt with the discomforts of having that double X chromosome have done our fair share of moaning and groaning. But I wasn’t sure. She could also have a seizure coming on. Or, she could be upset because her weekend caregiver had taken the weekend off. There’s been some changes in her staffing lately and sometimes that can make her unsettled and irritable. So the questions remained, what was the cause and do I medicate or not?

She seemed content as we put her to bed at 10:00, but a half hour later was making noise and sitting up. I laid her down and talked to her while stroking her hair. It didn’t help. I crawled into bed with her and tried to quiet her; she was better for a few minutes but still wanted to get up. So, I put her in her wheelchair and bundled her into a robe and slippers. The nights are getting really chilly now. I took her into the kitchen and gave her two ibuprophen and microwaved a rice bag. Promising her that she’d feel better soon, I settled her into her favorite recliner with a blanket and the warm rice bag on her tummy. As I cuddled next to her, watching a rerun of a very old sitcom, she was calm and seemingly content, but still alert and pale. About an hour later, her eyes started to drift closed. At last, the pills must have helped. Not wanting her to fall asleep in the chair, I put her back in her wheelchair and wheeled down the hall to her bedroom. I had placed a heating pad in her bed when I got her up so that she wouldn’t have to get back into a cold bed. I snuggled her under her fluffy down comforter and as her eyes drifted closed, there was a smile on her lips. Success. I went back to my own bed and lay there listening for awhile. Thankfully, the quiet house remained so, and I finally drifted off to sleep about 1:00 am.

Scritch, scritch, scratch. Scritch, scritch, scratch. What the heck! No, it wasn’t coming from Lauren's monitor. It was over my head. What could possible be making that much noise? It sounded large....really large. It was so loud that it had woken not only me, but my hearing-impaired husband as well. OK, so now I’m fully awake and I realize that, no, it’s not something large – it’s a mouse in the attic. But, this has to be Mighty Mouse...and he’s determined. No amount of wall banging is making him stop. We can’t sleep. It’s 3:00 am. We surrender. We get out of bed, and make a dash through the early morning cold to the spare bedroom. Jumping into the frigid bed, I realize that the monitor is still in the other room. I get back out; run across the hall and grab the monitor. Back in the other bedroom I am uncomfortably aware that.... it is freezing in here! I plug the monitor into the wall socket. No on light. Notoriously finicky, I wiggle the plug. No light. I find another outlet. Wiggle, wiggle, yes! Green light.

Finally under the covers, I realize why those home magazines always tell you to spend a night in your guest room to make sure that visitors will be comfortable. This is a full-size bed – wow, it’s really small for two people. And, for some reason it feels short! It shouldn’t be shorter than a queen size, should it? Well, the clock is creeping toward 3:30 now – and I’m just too tired to care. Of course, my double X chromosome has just kicked in and now and I’m clawing my way out of the covers, thankful for the cold night air. This is turning out to be a really long night.

A New Bed for Lauren

October 28, 2010

Last June when Lauren was in the hospital, I was surprised to realize what a convenience the flexibility of a hospital bed was when caring for Lauren. She has always slept in a daybed-type twin bed. This style of bed allowed us to add a fourth "side” (which we made ourselves) at night to make sure that she could not roll out. But it did not offer any positioning options and when necessary, we did what we needed to do by adding pillows in order to raise her head or support her in some way. This wasn’t always the easiest or most successful solution.

Truthfully, I hadn’t even thought of getting her a hospital bed. Last June was the first time she had been in a hospital bed since she had grown into an adult. It was obvious that, although we didn’t need to offer her more positioning options every day, when we did need options, a hospital bed was the easiest and most flexible way to go. A hospital bed would also make it easier for her other caregivers to meet, not only her care needs, but her positioning needs. This will be important when she moves into her own home.

I knew that a home model would not be the fancy, shmancy, totally electric model that we had used in the hospital. It would be a bare bones basic model – how ugly was this going to be? Lauren’s bed is pretty. It is yellow with  flowers and ribbons painted on it. Of course, how it would look wasn’t the only issue. The mattresses offered for the home model were either horrible, thin and not supportive, or simply not appropriate. Lauren would need good support, especially with her scoliosis and kyphosis. And, what about the bed rails? Would they be sufficient for her to be safe?

Needless to say, you can tell it’s taken me awhile to work this all out since it is now four days before the first of November. I had the durable medical supplier deliver a bed today – just the frame with the rails. I’m putting Lauren’s existing twin size mattress on the hospital bed frame. I wasn’t sure it would work – but it does. The mattress is too short but will do until we purchase an extra-long twin mattress – it was time to replace hers anyway. Both the headboard and the rails are rather low. I can visualize a solution to the low headboard – adding an extension, but I’m not sure what to do about the rails. They’re not terrible. They just don’t inspire confidence – do you know what I mean? I have to think about it some more. Maybe get some suggestions from her caregivers and her therapist. By the time I added her bedding and some pretty pillows it wasn’t too terribly ugly…..maybe I could paint some flowers on it.
The "pretty" bed

Incontinence Product Update

October 26, 2010

Back in August I told you about finally getting my act together and contacting a durable medical supplier in order to access Medicaid-funded incontinence products. Well, I received a call on Friday – two months later – that Lauren has been approved to receive these products and that the supplier would be placing an order.

I figure it costs about $40 a week for the products Lauren currently uses. That comes to $170 a month. That amount of money will mean a lot to her, and us, when she moves out on her own next year. I am concerned, though, that the Medicaid approved products will not offer her the same protection as we are able to achieve with her current products. Time will tell.

Carry On Turtle

October 22, 2010

I recently walked into a garden/antique shop and found myself in the midst of, at least fifty, turtle garden ornaments. They weren’t just your ordinary precast concrete turtles; no these were handmade with their shells inlaid with stones. If you’re a regular reader of this blog you know about Lauren’s attachment to Mr. Turtle and her turtle collection. Wouldn’t one of them look great on the front porch of Lauren’s new home? I had to have one for her. The only problem was that I was over 2,000 miles from home and had to get on a plane to fly back there the next day. OK. Carry-on!

I selected the most appealing turtle and bent down to pick up my prize only to find out.... that I couldn’t pick it up. It was REALLY heavy. Mmmm. I’ll need to get the smaller size – still cute! I wrapped him in some paper, put him in a double-bagged shopping bag, and off to the airport we went. I wondered if he contained anything that would cause a red flag at security, but really, he should be fine.

I piled all of my carry-ons into gray plastic bins, and walked through the scanner without bells or buzzers going off. Shoeless, I stood waiting for my belongings to come out the other end of their scanning when the guard paused, looked at me and said, “Is that a turtle?”

Uh, oh. I affirmed her query.

“I was just curious,” she said, and went back to her scanning.

I slipped on my shoes, picked up my turtle, and proceeded to the gate. Lauren’s new turtle had passed security and was soon flying, far from his home, to a new life on the front porch of a young woman beginning a new life of her own.

Lifelong Learning

October 13, 2010

I taught my father to use a cell phone last year. He’s eighty-seven. He grew up with an outdoor privy, listening to the Lone Ranger and Green Hornet on the radio, and walked ten miles through the snow to school each day (I was never sure that part wasn’t exaggerated). Telephones back then were black and attached to the wall. Now he has a phone with a “screen” and multi-functions. He wanted to know how the time on the phone could always be exactly correct and how that lady who answered my cell phone occasionally knew that I wasn’t available. His learning curve was steep, but he’s doing well with it now. He’s also learned to cook, clean, and do the grocery shopping, all chores that were exclusively performed by my mother. She is no longer able to do these things, and he has filled in the gap in their lives. Apparently, we don’t stop learning when we turn twenty-one.

When children with developmental disabilities leave their federally mandated schooling at twenty-one, they usually have no real opportunity to continue their education or access learning opportunities. Often, it feels like some invisible switch is flipped, and all expectations that individuals will learn something new or improve upon their current abilities cease. But none of us stop learning just because of our age. We do stop learning when we ourselves, or others, have no interest or expectations for change. When you’re dependent on others to facilitate your learning, and those people give up on you, your personal possibilities are unrealized.

I have expectations for Lauren. I am hopeful that Lauren will one day develop at least some minimal ability to communicate using pictures. I know that someday she’ll figure out that she can hold more that Mr. Turtles’s yellow string in those long thin fingers. I believe that the extent of her inabilities is in direct proportion to the extent of our own inadequacies to help her. Is it always easy to “keep the faith”? No, but last week Lauren taught me something. “Don’t doubt me, Mom.”

In an effort to find something new to amuse her, I put an audiobook version of Little Women on her mp3. It’s kind of a long book with many characters, which takes place around the time of the Civil War. She wouldn’t be able to follow the plot, but maybe the cadence of someone reading to her would be a nice change from the music to which she usually listens. And, she did seem to be enjoying it. She sat quietly content as the lives of Meg, Jo, Beth, and Amy played out. Suddenly, she got very vocal, a complaining tone calling me closer. Was she tired of it? Did the battery run low? I walked over and checked the mp3. The problem was that the book had ended. She was actually following the plot. She was telling me that chapter one had started all over again. “Been there, done that, Mom.” She needed a new book, a new story, a new opportunity to expand the narrow walls that confine her life.

Hiring delay....over

October 14, 2010

Well, all’s well that ends well, I guess. We received approval for C to start her job with us midday on Tuesday. What no one told me on Friday, was that both the state offices and the fiscal intermediary were closed for Columbus Day. So, we lost twenty-four hours, but I was able to juggle funding and get C working on Monday in order for us to get two complete shifts in before I had to leave. Fortunately, C is doing a great job already and Lauren really likes her. Crisis averted!

Never one to miss a chance to complain – let me share another facet of the hiring process that caused significant consternation in the last week. I received a certified letter from the fiscal intermediary saying that C was not approved for any position that required driving because of her driver history. There was no explanation of what that meant. When C filled out her driver history form there was no mention of accidents or tickets. So, what does that mean? Did she lie on the form or did the fiscal intermediary make a mistake? I contacted the FI and they said that her history revealed three or more infractions in the past three years, but couldn’t tell me anymore because of privacy issues. I asked C about it and she swore that her history was clear. And….she was very upset. So, upset that she called the FI over, and over, and over again over the course of three days. When they finally called her back, she shared with them that she had, at her own expense, obtained a copy of her driving history. It showed: an accident in which someone drove in to the back of her car, a ticket for her license plate holder partially obscuring the plate, and something about insurance regarding a change from one company to another. Now, how does any of that indicate that she is an unsafe driver? Did they discuss the driver history with her before they made their determination? No. If I had depended on the FIs determination, I may not have hired her because her inability to drive would impact Lauren’s ability to participate in activities.

At a time when it is so difficult to find competent caregivers, it is irresponsible to make inaccurate or inappropriate determinations that could affect the hiring of a perfectly suitable candidate. The FIs handling of this made me question my trust in C and could have cost us a caregiver who is working out beautifully. Just as I want to depend on the background checks and testing that is done to weed out unsuitable hires, I want to depend on those same things not to cost Lauren a perfectly qualified hire.

Hiring Delays

October 11, 2010

A few weeks ago I shared with you the relief that I felt over being able to hire, so quickly, a replacement for our second shift caregiver. Quickly is the operative word here, because I still haven’t been able to allow her to start working in that position. Why? Paperwork! We hired her for this position exactly three weeks today. She scheduled her drug testing and fingerprinting on that same day. She had to wait two weeks to get her fingerprinting appointment. The fiscal intermediary said that as long as they had the receipts for all of her testing, she could start. But, it wasn’t as simple as that. I emailed the receipt into the appropriate person, who then handed it off to another person, who then had to send it to the support coordinator who is with another agency. Fortunately, all of those people were in their offices, if they hadn’t been, this would be taking even longer. The support coordinator then had to make a revision to Lauren’s budget and send it to our DDD case manager who has to sign off on it. That hasn’t happened yet. I fully support and appreciate the security of the testing that needs to take place when hiring a stranger, but isn’t all of this waiting a little ridiculous since the new hire, C, has already been working with Lauren as a substitute, is filling a position that has already been approved, and is working for another provider who just had her do the same fingerprinting and drug testing for her position there? It just defies logic.

Maybe I wouldn’t be as stressed with this process if I wasn’t in such a tight spot time-wise. You see, I’m leaving in two days. My husband and I planned a trip a few years ago that we had dreamed about for over twenty years. Then I got sick right before we had to leave. We had to cancel the trip. It’s taken four years for us to be able to reschedule. I thought we were going to have to cancel again when I had to terminate L, but then C agreed to take the position. Usually I would not be comfortable leaving a new hire for at least two to three months. But since C is already a trained caregiver, she only needs to learn the “Lauren details”. Fortunately, I’ve been able to give her some hours under our other funding (Personal Preference). But it hasn’t been enough. If I can just get her working today and tomorrow – full shifts – I think I can go away content and comfortable. But that means I need to get approval in the next few hours.

Back to my original point, it should not take three weeks to get a new caregiver started. We’re not talking about working at WalMart here. We’re talking about providing the support that enables a person with disabilities to survive. Plus, it’s hard enough to find a caregiver without risking losing them because of these delays. Fingerprinting appointments in other areas of the state are taking over three weeks to schedule. I know of one family who has lost a hire because of the wait – there are probably more. We need to streamline and improve this process. Fingerprinting and drug testing results should be shared between agencies – maybe save the state some money? Testing centers should be held to requirements for timely processing and scheduling. And, we need to seriously explore extending the choices inherent in self-direction to include choices in how individuals manage staff. Under Personal Preference, Lauren is the employer of record for her staff – she makes the decisions about who to test, what to test, and when they start. Under Real Life Choices, the fiscal intermediary is the employer of record – they set the rules. We need to give individuals who are hiring people to handle their bodies and support them in their struggles to lead meaningful lives, to make the choices that meet their needs. I need to know that when Lauren is living in her own home, that she will be able to not only hire qualified caregivers, but can also do so in a timely manner which will ensure her safety and stability.

Chasing a Phenomenon

October 7, 2010

I was watching an interview with J.K Rowling, of Harry Potter fame, the other day. Now that she has announced that the series is over and that she will not be writing any other Harry Potter books, she said that she is being asked, “What will you do next? How will you top this?” Harry Potter became such a media and commercial success that he, and the woman who created him, became something of a phenomenon. Ms. Rowling intends not to let Harry Potter define who she is. She says that she will put no pressure on herself to match or succeed her past success. That chasing a phenomenon is neither healthy, nor necessary.

I’ve been thinking a lot about what the next step in my life will be. Raising Lauren was an all consuming adventure that took on a life of its own, while chewing up the plans I had for my own life and routinely spitting them out unrealized. Now that Lauren will be moving into her own home, there will soon be a greater degree of freedom....and uncertainty... around the direction of the remaining years in my life. For many years I’ve been afraid or unable to think about my own dreams and hopes, but have supplanted them with the all encompassing needs of Lauren. Not that I won’t still be very involved with her life, and won’t still consider myself to be her caregiver, but the very fact that we will not be sleeping under that same roof, having breakfast together every morning, and one ear will not always be trained to any sound of distress, is a significant departure from the norm of my life in the last twenty-five years.

Raising Lauren has been something of a phenomenon in my life. I did not have an inkling when I began what I was getting into, what a huge impact her life would have on my own, nor did I know how I would change, grow, and learn so much from the experience. I have written often about how the future was a scary place for me because I did not know where or how Lauren would live as an adult. With the plans we have now been able to put into play, I do not have that continual sense of dread always lurking in the back of my mind. This feels right. So, never one to miss an opportunity, I began to fear my own future without the need to provide Lauren’s daily care. I’m slowly realizing that I don’t have to be anything. I don’t have to accomplish anything more. What I have done is enough to define my life, to have had success, to have left a positive, worthwhile mark in this world. I am trying to be open to whatever the next phase of my life will hold, and I know that I will be more open than I ever could have been, without the experience of raising Lauren.

Aging Caregivers - A Close Look at the Future

October 5, 2010

My knees are sagging. I noticed this today while bending over to stretch out the gnawing ache in my lower back. There they were, semicircular wrinkles- from my vantage point- frowning back at me. I suppose that if I’d look straight on at them in a mirror I could turn that frown upside down. But, no, I was hanging upside down and those knees were definitely headed south. When did that happen? Oh, Lord, I wonder what else has surrendered to the unrelenting pull of gravity. See, this is why we’re supposed to become far-sighted before the sagging and bagging gets too serious. Unfortunately, I’m near-sighted. I just don’t want to see the affects of time up close anymore. I don’t want baggy knees staring me in the face. Age should come with the luxury of having a choice about what you have to look at too closely.

Whether our age is staring us in the face, or whether some other evidence that the sneaky harbingers of old age have brushed up against some other part of us; we are assured that aging is inevitable. That point was clearly presented during a conference I attended last week. The conference was on the effects of aging on individuals with development disabilities and the effects of aging on caregivers. It is critical to recognize that each one has a significant impact on the other. The dearth of services to bridge the gap between the increasing needs of individuals with developmental disabilities and the decreasing ability to provide care of their caregivers is a rapidly growing concern. I learned that there are over 4.7 million people with developmental disabilities in our country and sixty percent of them live with their families. Sixty percent of those 2.8 million individuals are cared for by family caregivers over the age of forty. Twenty-five percent are over the age of sixty. Do the math – that is 705,000 individuals who, are or who will imminently be, in need of an alternative residential option, a place to live that will be safe, practical, and reflect the wishes of the family who can no longer be primary caregiver.

I go to meetings and conferences all of the time where new theories, strategies, and ideas are presented on how services should be provided   But the reality is, you can’t improve something that doesn’t exist. You don’t have to be a whiz at math to know that if your child’s number on the waiting list is four or more digits – their name is never going to get to the top of that list. No, before that ever happens they will be on a new list – one with emergency in the title.  But isn’t that an oxymoron – emergency waiting list?  Way too many aging caregivers have no choice, but to see much too clearly for comfort, that the future will be a scary place for their loved one.

A New Hire, Thank Goodness!

September 30, 2010

In my last post I told you about having to terminate one of Lauren’s caregivers. That left us without a second shift caregiver. I thought, “Here we go again!” Searching for and training caregivers is probably my most dreaded part of self-direction. The advertising, screening, interviewing, and leap-of-faith final selection is very stressful. Then there’s the training. Since most of Lauren’s caregivers come to us with little or no experience, the training can be a lengthy, draining process.

However, I have good news! Remember the substitute caregiver that I just hired? Well, I offered her the position and she has accepted. And, she has been working in the field for some time now and is already trained. So, I only have to train her on specifically caring for Lauren and not start from scratch with Caregiving 101.  Thanks goodness!

Of course, this leaves me, once again, searching for a substitute caregiver. But, while Lauren is still home with us, I can deal with not having a substitute. When Lauren is out on her own, having a substitute will be a critical part of her staffing. Fortunately, I have until next spring to make sure that particular piece of the puzzle is in place.

Listen to Me

September 28, 2010

Lauren has been trying to tell me something over the last few weeks.  I wasn’t listening.  I was hearing, “I’m grouchy” “I don’t know what I want.”  I’m not feeling well.”  Instead of “I’m not being taken care of the way I deserve to be”,   “I’m lonely”,  Why is she being mean to me?”  Because I couldn’t face yet another caregiver search I was trying to make allowances, trying to put up with deficiencies of the hire we did last spring.  I just needed to get through the next few months, even a few weeks, I had things to do....then I’d take some action. 

Last week I realized that Lauren’s current unhappiness had nothing to do with her, and everything to do with the caregiver.  It had become obvious that this person simply didn’t care and could not be trusted with Lauren.  I did not wait one more day.  I took the action needed.  I went in to Lauren after I put her to bed last Thursday, leaned over her and said, ‘I’m sorry, honey, you won’t see her again.”  She looked up at me and smiled.  From that moment, her whole demeanor has changed.  Lauren has been happy, calm, delightful.  I’m sorry that it took me so long to hear her, that I made excuses about her “behavior” instead of respecting her stridently voiced request for relief from poor care.

Letting Go

September 23, 2010

The sky was blue today. That deep azure that makes you think that you really could understand infinity. The chalk marks of cirrus clouds just above the horizon were unthreatening reminders that nothing is perfect. Letting go of perfection has always been hard for me. I’m a neat freak, don’t like surprises, and plan everything out to within an inch of my life. You’ll have noticed that I’ve been regaling you with the nuts and bolts of Lauren moving into her own home, but I have not mentioned the emotional aspects. I have budgets, and caregiver charts, and tiny pieces of cardboard cut to scale, representing furniture pieces, that I can wiggle around on the house plan. But I haven’t talked about letting go.

Every once in awhile I allow myself a little daydream about what it will be like to wake up in this house without Lauren being here. I can’t even write that sentence without tearing up. How quiet the house will be. As I explore the thought, I pull my mind back to the present as the perceived reality is too distressing. How can I be so excited and relieved that Lauren will be getting her own home and so anxious and troubled at the same time?

I know I have dealt with the challenges that Lauren has by trying to make everything else about her life perfect. I control how she dresses, who caresfor her, where she spends her time, and what she does there. This is just as much for my sake as for Lauren’s, a need to make perfect what can never be perfect. It is time to separate my needs from hers. I will still be able to watch over and guide her life within the parameters of housing and care that we are setting up. But the level of control that I have now, has to end.

I am coming to terms with the fact that Lauren’s life can be richer if I allow her to experience life through eyes other than my own. There’s that saying about giving your children roots and wings.  I guess I’ve always considered an inability to use those wings to be another of Lauren’s challenges. I need to be the air beneath those wings instead of holding her so close that she cannot spread them. Over the next few months I’m going to be working on changing my perception of what needs to be perfect in Lauren’s life and at the same time...maybe take a look at my own.

          Ring the bells that still can ring
          Forget your perfect offering
          There is a crack in everything
          That's how the light gets in

                                     Leonard Cohen "Anthem"

Substitute Caregiver - Hired!

September 21, 2010

I’ve hired a substitute caregiver! I had kind of given up after my futile efforts to find someone in August. But, thanks to N’s great people skills, she told the right person about my search, and that person told her about another acquaintance of theirs who was looking for some additional hours. She’s already a caregiver, having been in the field for years, and specifically with the developmentally disabled in the last year. I interviewed her last week and hired her on the spot. During the interview she was talking about how much she loved her work at a day program. She said, “When parents are dropping off or picking up their children and I see the love that they have for their children.....how can I not provide the best care I can for that individual." Wouldn’t that be music to any parent’s ears?

C starts next weekend. I’m looking forward to having her with us. And, I realize how often, when I embark on training a new staff member, I am just dreading the training phase. Part of that dread comes from the uncertainty I have about the person I’ve hired. Part of it comes from the fact that new hires seldom have any experience so you’re starting from scratch. Part of it comes from the guilt, however irrational, that I have to ask someone to help me care for my child. So, is it any wonder that I’m actually looking forward to C working with us? N has known her for years, C is trained and experienced, and I know that she understands the very special love that a parent has for a child whose needs far exceed a typical child's and will never end.

The NJ governor’s office put out a proclamation last week naming it Direct Support Professional Recognition Week. The proclamation notes that the demand for more DSP’s will increase by thirty-four percent in the next decade and that there will be one million new positions available by 2016. In an effort to recognize DSP’s as true professionals and support not only their needs but encourage workers to enter this field, New Jersey has introduced the College of Direct Support. The College will offer an opportunity to gain the knowledge and skills needed to provide appropriate care and to be certified in that care. This is the first step toward building a competent, well trained staffing pool. I look forward with hope to the day that I do not have to dread the task of training yet another person who is not doing the job because they want to, but rather, because they are waiting till something better comes along.

The Plan for the Future - Care

September 16, 2010

No matter how creative we are in developing housing for Lauren, if she doesn’t have competent, loving, respectful care – 24/7 – her needs cannot totally be met. Lauren has spent twenty-five years in a loving home environment. Her care has either been provided by her parents, or caregivers overseen by her parents. In order to build a care “network” around Lauren that will provide the same level of care in my absence, it will have to have certain qualities.

It will need to be Stable – Lauren ‘s care requires physically handling her, performing very personal tasks for her, understanding how she communicates, and understanding her need to have the caregiver help her live her life. There cannot be undue turnover in staff and her staff needs to work as a team.

It will need to be Respectful – Lauren is a daughter, niece, granddaughter, cousin, and friend. But most of all, she is an individual who deserves the same respect and consideration that every citizen in this country deserves. She has always been included in her community and must continue to be allowed to live a life where she is valued.

It will need to reflect Love – The care that Lauren has received all of her life has come from a place of love. She is and will always be my baby. I watch my eighty-eight year old mother with my sixty-three year old brother and muse, “Wow, she still thinks of him as her baby!” Intellectually, of course, we know differently. But, emotionally, the love that we felt for our babies never changes. Maybe, for those of us whose child never outgrew many of the care needs that they had as infants, we feel it even more. Even if her caregivers do not love her as I do, their care of Lauren must reflect the knowledge that she is loved by others.

I need to build a care network around Lauren that will be successful in my absence. Oh, I will most definitely still be around. But, the network must be developed bearing in mind that I won’t always be around. I feel that the quality and security of Lauren’s care thus far reflects my constant oversight and influence. I need to replicate that. One person came to mind that had all the qualities and skills necessary – Lauren's current first shift caregiver, N. But, we needed more than just a caregiver, this person needed to be someone who could share her life, oversee the quality of her care, and basically be my surrogate.  N has agreed to take on this role. And, N comes with a bonus – her wonderful husband, L – who Lauren adores. N and L are in a place in their lives where they are ready for a change and have agreed to move into Lauren’s new home and be her housemates.

N will continue as Lauren’s first shift caregiver, do some overnights, and supervise staff and Lauren’s home. Lauren will continue to have a second shift, and weekend caregiver. And, we will add an overnight shift a few nights a week. Even when Lauren is sleeping well, you do not sleep as you need to because you are listening for sounds of a seizure or distress. I will never ask anyone to do what George and I have done for twenty-five years – sleep with a baby monitor every single night. L will join in Lauren’s care as he oversees the “mechanics” and care of her home, and will continue to be her supportive “buddy”.

Putting together all of the pieces of Lauren’s future, for the most part, has taken creativity, knowledge, and a calculator. However, finding the perfect someone(s) to step into this very special “housemate” role took far more.  It was nothing short of a blessing, a gift, a touch of grace that has so infrequently been part of Lauren’s life, that we found who we needed,  already a part of our lives.

The Plan for the Future - Housing

September 13, 2010

Today I’m going to write about the housing portion of Lauren’s future. Over the years, every scenario we had tried to put together had problems - too expensive, too prone to fail, not sustainable. They just didn’t work. If she bought (or we helped her buy) a home, the cost would be exorbitant – mortgage, taxes, utilities, insurance, repairs, etc. We could help her for a few years but not for the rest of her life. Or, if the state determined that she was in immediate need of a residence change, her budget would be increased so that she could rent a provider-owned home, which they would manage and staff, but that would mean giving up a lot of control and choice. Or, she could rent a condo or apartment, but in our area condos are usually in a townhouse format (bedrooms up) and the few apartment complexes that would be safe for her, were not built for accessibility. The future did not look promising – it just looked downright scary – impossible – a life unsupportable without parents who would not be there to protect and provide for her forever.

But there was an answer, it just had never occurred to us before. We are partners in a mobile home park. Mobile homes are owned by their residents, and the piece of land on which they sit, is leased. When we started to consider the scenario of Lauren living in her own mobile home, the pieces, this time, fell into place. Because we own the park, we can purchase Lauren’s home at our cost – a substantial savings. The mobile home of today is a far cry from those of years ago. They look like a nice ranch-style home, and can have eight foot ceilings, sheetrock walls, and even fireplaces. Leasing the lot is reasonable and includes property taxes, water, sewer, and garbage. Lauren’s income will not cover all of the rent (mortgage plus lot lease) and the other expenses of her home at this time, but it will cover part of it. We will need to help her for a year or even a couple of years until she can get a subsidy from the State Rental Assistance Program (SRAP). When she gets the SRAP, she will need to pay twenty-five percent of her income towards her rent and the subsidy will cover the rest of the rent. She will then have income left over to pay her other housing expenses. (The cost for caregivers will be covered by her self-directed supports.)

Once the financial details were worked out, we needed to make sure that we could get a home for Lauren that would fit her physical needs. I designed a home that would have three foot doorways, four foot hallways, an accessible bathroom for her, and an open plan living area (lots of room to maneuver). The home also includes a separate suite for a caregiver (more about that in my next post). A ramp will allow Lauren all-weather access to a garage for her van and lots of windows will make for bright, well-lit rooms (Lauren is visually impaired.). We took the plans directly to our manufacturer. They accepted the plan and will build the home as designed. They have been extremely helpful in working out all of the details from a special roll-in-shower to pocket doors instead of swinging doors in some locations. We have selected the perfect lot in the park to place the home on and are working out all the elements that will make living in and around the home accessible for Lauren.

I think this will be a happy place for Lauren to live. She will have a home designed just for her. She will be in a safe, secure environment. She will be even closer to shopping, parks, her doctor, and her pharmacist than she is now. But even with this perfect housing solution, the plan for the future would not work without the very critical piece of providing for Lauren’s 24/7 care needs. In my next post, I’ll talk about how we figured out that very vital part of her future.

The Right Thing

September 10, 2010

Figuring out Lauren’s future as an adult has taken many twists and turns over many years. The only consistency, and ever present cloud, was the ongoing fear of the unknown. We just couldn’t wrap our minds around what her future would look like. We knew what we didn’t want for her – a life where choices were made without her input, a life of few choices, a life drastically different than the safe and secure one she has lived thus far. We just could not figure out what, exactly, that looked like.

Not to get all poetic on you, but as I mentioned in my last post, one day it was just there, right in front of us, like a vague, ephemeral mist suddenly coalescing into a clear picture. It was so clear, so right, that putting together the major details literally took two weeks. The major details were: where – Hillside Estates at Franklin – our mobile home park in a home that I have been able to design specifically for her, how – in a life-sharing arrangement – her caregiver of three years and her husband have agreed to live with Lauren and share her home, when – in about nine months (the winter weather is going to delay us a bit).

Putting this all together required us to figure out two main things: housing and care. In my next two posts I’ll go over the details of both, the questions that had to be answered, and how or why we made some of the decisions that we did. The thing that has surprised me the most in this process is this feeling of doing “the right thing”. After so many years of absolutely nothing feeling “right”, of thinking that probably nothing ever would, of trying to face the reality of settling, some day, for a future for Lauren that was not all we wanted for her, we now have something that fits into our dreams for her. Is it going to be problem-free, perfect? Of course, not – none of our lives are. But for the first time since we realized our precious baby girl was going to have a very difficult life in front of her, when I cry – they are tears of joy, gratefulness, and relief.  I really think this is going to work.


September 8, 2010

Today is a major milestone in Lauren’s year – it’s her birthday. She is twenty-five today. Today is a much smaller, but still significant, milestone in my life. I started this blog exactly one year ago today. And, this is my one hundredth post. I had great hopes....but I didn’t know if I’d have enough to write about every week for a year. Apparently, caring for Lauren offers a great deal of material and subject matter. I have had a few faithful readers, others who drop in now and again. And, amazingly, readers who have stopped by from over thirty countries and most states. Thank you to all who have walked all or part of last year’s journey with me. I had originally planned to close my blog after a year, but I find that recent developments will be providing me with a new destination on this journey and much more to write about. Read on.

What does pretty much every twenty-five year old still living at home, dream about doing? They want to move out of Mom and Dad’s home, right? In the next year, Lauren will be doing exactly that. Are you surprised? I am! If you’ve been following my posts, you have some idea of how the question mark that was Lauren’s future has been an ever present, ever worrisome, fear- inducing companion of my days. We have, over the years, come up with every conceivable scenario and possibility for Lauren’s adult life – the day when we could no longer be her primary caregivers. Now with that day, for all intents and purposes, here – we still had no answers. A couple of weeks ago, unexpectedly, the answer was suddenly right there. My husband and I were driving along noticing the plethora of for sale signs on houses in our area and discussing the feasibility of us/Lauren/her trust buying a house which would be hers to live in with caregivers. Could we get some type of special mortgage? What about all the other associated expenses like electric, taxes, maintenance? How could we possibly cover this all? We had met with people seeking the answers to these questions and usually just came away with more questions. Nothing seemed feasible, manageable, sustainable. And, that was the critical piece – sustainable - what wouldn’t just work today or five years from now, but would still work twenty-five years from now? Then it suddenly came to me – THE PARK! We own a mobile home park – manufactured housing community – in a nearby town. To us it is a business that we’ve run for about thirty years. It just never dawned on us that it could also be the answer to Lauren’s future. There are many reasons why this will be the answer to all of the parts of the equation, which is Lauren’s future, that never added up before. Over the next year I will blog about the process and progress of building Lauren’s future. And, I ‘m sure there will be emotional hills and holes to explore. It’s going to be a very exciting year. I hope you’ll stick around and find out how everything works out.

The Too Quiet Complaint

September 1, 2010

Somehow in the evolution of the human species the tendency to complain – about everything and everyone - has become stronger than the tendency to do anything about the something of which we complain. How often in the grocery store or the coffee shop do you hear people bemoaning the current state of our economy, national policies, or political climate? How few people do you see acting on their dissatisfaction? The same is true in advocacy for individuals with developmental disabilities. Parents stop me in Wal-Mart to complain about the lack of services or they call me to bemoan how, when, or why they can’t get the help they need. But do they speak to people who can actually do something about it? No. Do they write letters or go to meetings? Very few do. So, decisions are made, programs are designed, rules are written, all by a chosen few in power who, usually, are not family members of individuals with developmental disabilities.  They have no life experience to guide their actions. The silent majority do not realize that their silence is very loud, very powerful, very obvious. It shapes and guides the decisions that are made about the very things of which they complain, all too quietly.

August Updates

August 30, 2010

This month, I have posted on trying to get Lauren’s wheelchair repaired, and on trying to find a substitute caregiver. I thought you might like to know how things turned out.

First – the wheelchair. The provider did show up a week later as promised (much to my surprise) with the correct parts and repaired the chair. Of course, you would think that if you replaced the tires that you would make sure the brakes worked with the change...he didn’t. I caught him before he escaped out of the driveway and had him come back in and fix the non-working brakes. Otherwise, the repairs are fine. Yeah!

Second – finding a substitute caregiver. As I had posted, I went to a staffing agency to try to fill this position. Although they were interested, I was concerned that their rate would not work with Lauren’s Real Life Choices budget. I have now heard that their rate has been approved by the State. But, I don’t know what that rate is. So, now I am waiting to hear if Lauren will have enough money in her budget to cover the rate. So, our progress is slow, but it is moving in the right direction.


August 26, 2010

I’ve been an advocate in the developmental disability community for about twenty years. The terminology that is used to describe people, services, and supports changes frequently with every change in how, where, or when services and supports are provided. Instead of simplifying things, being more respectful, or becoming more “person-centered” the new terms frequently just become another way of distancing or separating people with developmental disabilities from the mainstream of society.

Take the term “person-centered thinking” – now there’s a concept. Do we really need a term to remind us to think about people as individuals rather than as a group? Instead of expanding to “person-centered planning, person-centered services, and person-centered approaches” shouldn’t we just be acknowledging everyone as individuals, family members, community members, and citizens?

Then there are all of the terms that have crept in along with self-direction or should I say self-determination...self-directed supports....self-directed services, whatever. We have programs called "Real Life Choices" in which a “Support Coordinator” (case manager) develops an “Essential Lifestyle Plan” and a “Health and Safety/Adaptive Behavior/Risk Summary in which we have ”Environmental Modifications” (Do you need a wheelchair, eyeglasses, a special spoon?), a “Behavior Support Plan” (What challenges can we help you with?), a listing of “Social Behaviors” and “Community Awareness” (How do you communicate?, What do you like to do with your time?, Can you tell time?) as well as a “Circle of Support” (Do you have family, friends?) Why, if we have to ask these questions in order to fill out the forms (that’s a whole ‘nuther post), do we need to give them terms that have no meaning to the individuals answering the questions – only to the professional asking them?

One of my favorite terms is “habilitation”. The State defines this as “Habilitation is the process of providing those comprehensive services that are deemed necessary to meet the needs of individuals with developmental disabilities in programs designed to achieve objectives of improved health, welfare and the realization of individuals’ maximum physical, social, psychological and vocational potential for useful and productive activities. Although the specific services will be described in an individual’s Plan of Care, habilitation services are designed to develop, maintain and/or maximize the individual’s independent functioning in self-care, physical and emotional growth, socialization, communication, and vocational skills.” ...In other words – what supports does this person need in order to live his life? This is only the first two sentences in the State definition. It continues on for an entire page.

And then there is the most recent term I’ve been become involved with – "Direct Support Professional", what we used to call caregiver or staff. Now I fully support efforts to professionalize and give due respect to the underpaid, overworked individuals who provide care for individuals with developmental disabilities, but isn’t that title a bit much? There is something inherently wrong with a twenty-five letter, three word term to describe anyone’s job. Think about it nurse...or even better, RN, lawyer, realtor – all respected professions that manage without run-on titles. It just feels excessive even in a community that seemingly wallows in verbiage. All I know is, If President Obama can call the people who help him live his life “staff”, why can’t my daughter?