A New Year of Good Intentions

December 31, 2009

I don’t like resolutions. They scare me. Will I feel worse if I don’t live up to my own expectations? Will I not even attempt to resolve to do something out of fear of not being able to fulfill it? Who needs more pressure?! I need a gentler start to the new year. I’d rather start with good intentions and with hope. I know, I know, supposedly the “road to hell is paved with good intentions.” But is paving a road with good intentions really such a bad thing? I think it’s better than the alternative. So this coming year I intend to try and change the attitude that has been coloring everything in my life for many years. I hope to find the key to looking to the future with eager anticipation rather than paralyzing fear.

The future is a scary place for me – a mother of an adult child whose very existence depends on mine. The older I get the scarier it gets. The older I get, the more realistic I must be and the less hopeful I have become. Not just for my family, but for the many families that have no idea what the future will hold for their loved one. This is a time of economic woes and non-existent investment in the expansion of the system that supports individuals with developmental disabilities, even though their number increases yearly. It is draining and depressing each time I consider the future of innocent individuals whom, through no fault of their own, are totally dependent on others. I find that the subject is on my mind every day. As I begin a new year I am taking stock of the effect that the constant worry is having on me. I’m unrelentingly stressed, tired, and burned out. It has to stop. The “issue” will never go away, but my daily focus on it is affecting my physical and mental health, while doing nothing to change or solve the situation.

Five years ago, I was panicking about what would happen when Lauren left school. But, things have fallen into place and for right now...we’re OK. I have to find the faith that I can only do so much, plan so much, expect so much from myself and it will be enough. I guess that is the hardest point – just what is enough? I have tried to answer that question in the last few days of this decade. I am in tears while I write this, still not having found the answer. I just know one thing; I can’t keep putting myself through this day after day. It has to stop.

So, my intentions for the New Year are to find perspective, to have faith, and to stop living so far in the future that I lose today. I want to celebrate the good days, not fear that there may not be others. I want to recognize the blessings in my life and not be blinded by the uncertainties of tomorrow. I want to find the faith that will allow me to believe that somehow, someway, good people will care for Lauren when I no longer can. Right now I don’t have a clue how to even start doing all that. But, I have good intentions.

May the New Year bring you good health, peace of mind, and joy of heart.

Happy New Year,

Sacrificing Privacy

December 29, 2009

One of the things that you give up when you need to have caregivers in your home is privacy. It’s something that you have to sacrifice in order to provide the care that your child needs. Over Christmas, and due to a sick DSP, we had no help for most of four days. Is was worrisome for us because George is just getting over an injured back and I’ve had a rib injury that regresses every time I need to do any lifting. But, there is no other choice when Lauren’s DSP’s are off, we are the designated caregivers. We managed to get through the days without either of us doing grave injury to ourselves, and we found that it was kind of nice to have had that little oasis of privacy. We could have run around the house in our underwear if we wanted (we didn’t) or naked for that matter (again, we didn’t). Of course, there is much more to privacy than that.

We have DSPs that understand the fact that they are working in someone’s home and they respect certain boundaries. But no matter how discrete, no matter how essential and valued a DSP is, they are still not your family. As we have needed more and more outside help to meet Lauren’s care needs we have had to sacrifice more and more of our privacy. We have done it willingly so that Lauren was safe and happy. We have done it thankfully because we have been able to obtain the care that Lauren needs. And, we have done it carefully, making sure that there were private areas in our home and being clear with DSPs about our needs so that they can feel comfortable and not intrusive while in our home.

Having DSPs in our home has allowed us to provide the quantity and quality of care that Lauren needs. Sacrificing our privacy was something we were willing to do for Lauren, yet really had no choice. If you find yourself in the same position, proceed mindful of everyone’s needs, so that the result is something that everyone can live with.

It's the Night Before Christmas

December 24, 2009

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, it's 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.

Educating Doctors

December 22, 2009

The other day I heard a doctor who works with medical students say that the students need to learn that life does not end just because you have a child with disabilities. Ever since I heard that, it’s been bothering me. Life as you know it ends whenever a child comes into your life. Everything changes. You are now responsible for a new life. How can it not change? If that child has disabilities the impact will be greater yet. If that child has severe disabilities, your life will never be the same again.

Instead of teaching our future doctors that a child with disabilities will not alter the fabric of the parents’ lives, they should be made aware of the new skills needed, the new stresses faced, and the new issues that must be dealt with by parents. We need doctors that take family situations into account. Who realize their patients health and progress are affected by the health and abilities of the parents. Who honor the potential of the child and the contribution of the parent. Because an understanding of all this is critical to the child receiving appropriate care and to the parent receiving appropriate guidance in the care of that child.

We all know the stories of the child with autism kept waiting for an hour and a half in the doctor’s office. We’ve heard of the child put on a special regimen or diet without adequate instruction to the parent of how to manage it. We’ve experienced the doctor who is afraid to treat a child for a simple illness because he doesn’t understand their primary diagnosis…and has no desire to learn. Parents already dealing with a difficult situation often need to deal with the deficiencies of the medical care they seek for their child as well. The doctors of the future need to recognize the great joy that any child brings to a family while respecting and understanding the impact that a child developmental disabilities will have on that family forever.

We All Need Friends

December 17, 2009

We sometimes make our friends in school, sometimes at work, church, or, as we get older, we may connect with the parents of our children’s friends. Lauren had peers that she spent her days with in school, but they never saw each other outside of the classroom. Still, I think she would have considered them her friends. And, then she left school at 21. Now at 24, she has no friends her own age or even close to it. Self-direction has allowed Lauren to build a life that works for her right now, except when it comes to friendship.

We all need friends, not acquaintances, not just familiar faces. We need those people who care if you’re sad, are there to share your joys, and choose you amongst all others to spend their time with. We need people who simply like us, not people who feel sorry for us. We need the special connection that only comes through friendship.

Lauren cannot reach out to people, can’t find commonalities to explore, and doesn’t appear to offer much to someone else. They’re wrong, but I understand that. So the people whose lives she crosses don’t become friends. The thing is... friendship only works when it occurs naturally. It can’t be forced. I berate myself for not doing more to “facilitate” Lauren’s ability to make friends. But really, that’s not how friendship grows.

I hope someday she will have people in her life besides family and those that are paid to take care of her. I just don’t know how to make that happen yet. Until then I try to make sure that at least one of her DSP’s is close in age to her. (We have Cori right now, who is 28.) So, at least for part of the day, she has an opportunity to be exposed to the music that Mom doesn’t get, has someone to tell Mom that I have to stop dressing her like she’s twelve, (but I thought that sweater was really cute!), and someone who understands why she thinks that guy on American Idol is really cute.

Mothering Takes its Toll

December 15, 2009

The University of North Carolina – School of Social Work recently released a research brief titled Material Hardship in US Families Raising Children with Disabilities. It talks about the fact that as income rises above the federal poverty level, hardships decrease for families of non-disabled children but not for families of children with disabilities. One of the factors mentioned as affecting material hardship is that mothers often need to reduce their work hours or refrain from working at all in order to stay home and care for a child with disabilities. Therefore, family income is negatively affected.

While Lauren was growing up I could never have held a job and cared for Lauren at the same time. I never knew when she would have seizures and couldn’t attend school. If she got sick, she was out of school longer than the average child. There were meetings, conferences, and consulting, that had to take place during school hours, far beyond those experienced by the parents of typical children. Lauren was my job. But what if I could have had a career? What would I have done? Who would I be today? Even my choice of college majors was affected by Lauren. Through independent study, I was able to earn a Bachelors degree in Psychology after Lauren started school. But that was not the major I had intended to pursue. However, a degree in art would not have helped me deal with child study teams, specialists, and social services. It would have fulfilled my dreams, but I would have been poorly equipped to help Lauren attain hers.

Caring for a child with disabilities affects not only your earning ability and potential but also your perception of who you are as a person. If your child needs full-time care your identity becomes that of caregiver and you can easily lose yourself in a world shaped by the intensity and diversity of needs you’re required to fill. That doesn’t end when your child becomes an adult. Some mothers, who are able to work, find it increasingly difficult to continue to work as their child ages. There are few after-school programs for teenagers or “after-day program centers” for adults.

So we are the “life-support” entities that make our children’s lives possible. We set aside personal goals and dreams until they fade away from years of inattentiveness. Our long-terms goals become that of securing our children’s future rather than our own. I think that meeting the challenges that Lauren presented me with has required me to be a better mother than I ever would have been without her special needs. But at this stage of my life I find myself asking that eternal question “Is that all there is?”

Support Coordination for the Future

December 10, 2009

If you are receiving self-directed services in New Jersey (Real Life Choices program) you will have a support coordinator working with you to assist you in formulating a budget and plan of care that meets your needs or that of your family member, within the parameters of your budget. Our support coordinator has also been very helpful in resolving issues with the fiscal intermediary, answering questions on a myriad of subjects, advocating for Lauren where necessary, and being a sounding board when I need to vent. For now, this works for us. But how can this work when Lauren needs more help self-directing than I may be able to give? Will self-direction end for Lauren when I am too sick, too old, or too...dead to provide the supports that are not in the support coordinator’s job description?

Lauren will need someone who can be responsible for hiring, firing, supervising, and developing schedules for staff and arranging substitutes for time off. Someone will have to oversee the timely filing of timesheets. Someone will have to make sure that her housing, food, insurance, utility, transportation, and personal care needs are met. Someone will need to make sure that she has appropriate medical care. Someone will need to manage her finances. Someone will need to make sure she is living a fulfilling, safe, and connected life.

The responsibility for all of this need not fall on one person. If the support coordinator could oversee the “business” end of Lauren’s self-direction, perhaps a family member or friend could oversee the more personal aspects of Lauren’s life and serve as advocate for Lauren’s quality of life. If support coordination could be structured into levels of support it could help smooth the way for self-direction to continue, as the ability of family members to participate in the process wanes. Support coordination could increase as needed. In the long run it must be more cost effective and more humane to provide additional support coordination than to end an individual’s self-direction in order to meet their care needs. Why change an individual’s way of life just because their family’s abilities change? Why saddle them with double the loss – the loss of a family member’s support and guidance and the loss of the life they enjoy?

Faith and Common Sense

December 8, 2009

“Faith is believing in things when common sense tells you not to.”  Maureen O’Hara shares this perception of faith with Natalie Wood, portraying her precocious daughter, Susan, in Miracle on 34th Street, my second favorite Christmas movie. (My first is White Christmas.) Faith is something parents of children with developmental disabilities know a lot about. When our children are young we have faith that the schools they attend and the staff who work with them will have their best interests at heart and know that all children have potential, but we are usually disappointed. As our children grow we have faith that their peers and neighbors will include them as respected members of their community and value the unique qualities that they bring to the world, but we are usually disappointed. As they become adults we have faith that the society in which our children will live out their days understands their needs and accepts our common responsibility to care for our most vulnerable citizens, but we are usually disappointed. Would it be better is we just listened to common sense instead of having faith? If we did, could we get through each day, each week, each year?

Child of Mine

December 3, 2009

I wrote this poem about Lauren sometime last year. I’d like to share it with you.

Child of Mine

                             Child of mine

                                  You are

                                                Defenseless and trusting,
                                                Your dreams go unexpressed
                                                Destined to another’s whim?
                                                Peril or protection is your fate?

                                                Sunshine in your smile
                                                Radiant spirit charming all
                                                Face, luminous with inner light
                                                Your winsome wiles warm my days.

                                           A Music Lover
                                                 Joy filled notes brighten your face
                                                 You dance in your heart
                                                 Melody the heartbeat of your soul
                                                 Composes the anthem of your life.

If you would like to read other poems and essays by moms of individuals with developmental disabilities, please check out the work of the Writer’s Group of Family Caregivers sponsored by the Elizabeth M. Boggs Center on Developmental Disabilities. http://rwjms.umdnj.edu/boggscenter/projects/Writers_Group.html

A Christmas Present for Lauren

December 1, 2009

There are only twenty-four shopping days left until Christmas and I’ve barely started. I have a list of people I need to buy for, but not a list of what I’m buying. The hardest person to find something special for is Lauren. Hardest, because she can’t tell me what she would like, drop hints about that special something, or leave sale catalogs lying around open to one particular page with a red circle around a great pair of boots or new winter coat. Yet she should be the easiest, because she doesn’t really care what I get her. She feels no need to acquire “things”. She wants comfortable clothes, her favorite music, and somewhere to go. Nonetheless, I still want to find that extraordinary something that lets her know how special she is to us. I go through this every year, racking my brain for ideas, running from store to store, pouring over the mail-order catalogs to find the perfect present. Over the years nothing I’ve ever bought for Lauren stands out as making a big splash with her. When she was very young I could find some colorful or noisy toy that would make an impression on her for awhile, but as she got older my options dwindled.

Maybe my approach to this is all wrong. If you ask the average person what they remember or love the most about Christmas, I bet very few will say the gifts. I bet their favorite things will revolve around family, friends, and traditions, maybe the lights and music, maybe the warmth the holidays bring to this chilly time of year. Perhaps I need to concentrate on surrounding Lauren with the joys and delights of this special time. I need to stop searching for an unknown and focus on the wonders of this season. I need to make sure that her playlist includes O Holy Night and the Chipmunks singing “Christmas, Christmas time is near...” (No, I’m not including those dogs barking Jingle Bells.) I need to find some holiday concert or better yet children’s chorus to take her to hear. I need to make sure she has a red sweater and something sparkly to pin in her dark curls on Christmas Day. And, I need to tell her the Christmas story and what we are really celebrating. Instead of giving her a package decorated with a pretty bow, what I need to do is make sure that she feels the love and joy we too often miss as we rush around doing what we think is important instead of what really is.

So, this year I think Lauren will have her own little Christmas tree aglow with lights in her room. It won’t have gifts beneath its limbs but will be skirted by an embroidered cloth with crocheted edging made by her great-grandmother. I will find the Christmas sheet music buried in the piano bench and dust off the keys of my long idle piano. I always seem to be too busy to play for her. And, instead of wasting hours and hours shopping for that elusive perfect present, I’ll curl up on the couch with her and watch Miracle on 34th Street or maybe check out Whoville and the Grinch. And, instead of worrying about how little time is left to shop for that special something, I’ll try to show Lauren that at Christmas something special is all around us.

In Thanksgiving

November 26, 2009 - Thanksgiving Day

Today is Thanksgiving Day. Soon my home will be filled with family gathered around an enormous thirty pound turkey with all the trimmings. We take turns hosting the dinner each year but the menu never varies. It is traditional and comforting in its predictability. Any creative deviations meet with serious displeasure. The food will disappear all too quickly and groaning satiety will be our after dinner music. Before it all begins I want to take a moment to remember the things I sometimes take for granted. The things, that as the mother of a young woman with disabilities, I should be thankful for everyday.

My husband – George has always been an involved and loving father. He has held my hand through all the trials and tribulations of raising Lauren. He continues to help in Lauren’s physical care and in making sure that Lauren has everything she needs. How long can I continue to expect him to provide the level of physical care and emotional support that he considers his responsibility? Time doesn’t care about responsibilities. Time will take its toll on our abilities and faculties regardless of our wishes. George will soon be 74. He is doing well. I hope time is kind to him...and me.

Lauren’s services – Without the funding that allows us to hire individuals to support Lauren, I would not be writing this today. My health and my body would not have held up without the help of other caregivers. Lauren’s needs are extensive and unending. There are so many families in this same situation that have little or no services or supports. I can’t imagine how they get through each day. I couldn’t have.

Lauren’s Direct Support workers – Each day I place my child into the hands of other people. Because of the wonderful women who are Lauren’s DSPs I am able to do so with complete faith and security that they will care for her with kindness and keep her safe. We need to provide the wages and respect for this position that will attract more individuals like these to careers as DSPs so that every family can be thankful each day that their loved one with a disability is well cared for.

Family – I get to spend this day with my family. Not everyone can say that. There is security in knowing that if I ever needed them, one call would bring someone running. There is closeness yet a point of disconnect. There is no one in the family who participates in Lauren’s care and no one who has expressed any interest in doing so in the future. I wouldn’t want them to take over Lauren’s day-to-day care but I worry about who will manage her life when I no longer can. Will her future fall into the hands of a stranger?

Finances – We are able to provide Lauren with the necessities of her life and a comfortable, accessible home to live in. That will not always be the case. George is still working and we have planned for her future as best as we can. But, there is no way that we will ever be able to provide for Lauren for the rest of her life. Her needs are too extensive and expensive.

Friends – Over the years I have met many moms of children with developmental disabilities. Some have become very good friends. We raise each other up when we’re down, we share information and educate each other, and we find humor in the craziness that is our lives. We need each other and treasure our friendships, even though we often can find little time for each other. Our common bond of children with special needs holds us together as it creates barriers for other friendships. Friends I have had in the past have drifted away unable or unwilling to understand my life or Lauren’s. My child wasn’t going to soccer games or dance class. My child wasn’t invited to birthday parties. I couldn’t hire the teenager down the street to babysit. My life was too restricted, too sad for them to deal with. Truthfully, I hope I would have been different if I had been in their place, but I’m not sure I would have been. If you haven’t lived this life, can you possibly understand it?

Country – How fortunate are we to live in a country where we do not experience the horrors and atrocities of war on our doorsteps? We live in a country where we are free to speak our minds and where our disparate opinions and beliefs mold rather than tear apart our stable way of life, a country that, with all of its faults and inadequacies, tries to care for its citizens and respect human rights. But, will people with developmental disabilities, those most poorly equipped to speak up, to demand equality, to express their needs, ever really be accepted and valued by their fellow citizens?

How fragile are our blessings. How important it is that we nurture and treasure them while we have them. I hope that you can count many blessings today. Happy Thanksgiving to you all.

The Day It All Began...and Ended

November 24, 2009

It was just a regular stop sign, a red octagon with bold white letters – STOP. I’d probably seen thousands just like it in my twenty-nine years. But this one was memorable. In fact, it’s my clearest memory of that day. It was so much more than a traffic command. It represented the end of more than a road. It represented the end of the life I thought I was leading. It represented the end of the life of the daughter to whom, I thought, I had given birth. The road beyond that point would be unfamiliar, twisting, and scary. A road I didn’t want to travel. So, I sat at the stop sign.

The stop sign was at the end of the hospital driveway. The hospital where we had just heard the news that something was not right with our beautiful, smiling baby. How could anyone think that my pink and white, sleeps through the night baby was anything less than perfect? I had stenciled forty-four peach colored bears around the walls of her room. Each held a yellow flower. Peach and white gingham decorated her crib. I had read every book. I had drunk my milk. I had done everything right. What did I miss?

They said developmental delays, “See a pediatric neurologist.” I had never heard of a pediatric neurologist. He said, “Let’s do some tests.” There was no diagnosis, but he said, “I believe your daughter will not develop cognitively beyond the age of seven. Let’s do more tests.” A year later came the diagnosis – Leber’s Congenital Amaurosis. Can you repeat that?

I did the research. That’s not my baby. My baby can see. My baby has healthy kidneys. What do you mean, she’s ‘atypical’? Please be wrong. They weren’t.

In hindsight I know that even though I was hearing things I did not want to hear, I had been the first one to know that there was something wrong. I had read every book. I knew that her development was not progressing correctly. I just wanted someone to tell me that I was wrong. Me, the type A, perfectionist, know-it-all wanted more that anything else in the world to be wrong. I just wanted everyone to be wrong. We weren’t.

Because I had picked up on a problem and started asking questions before anyone else, Lauren was in therapy and receiving care very early. Yet, I treasure those first four untainted months. Months when I was blissfully ignorant of the way her life would unfold. Months when I simply enjoyed this new life that was enriching my own. Months of joy, before a stop sign would represent the end of our lives as I had planned, dreamed, and expected them to be.

What Will Today Bring?

November 19, 2009

Lauren woke me at 4:00 this morning. She was having a seizure, her second in two days. What’s this about? Lauren usually has one or two a month, not two in two days. I stroke her cheek in the cold, dark early morning and wonder...Is she getting sick? Has something changed? Have I missed something? She had the H1N1 flu shot a few days ago. Could she be having a reaction? I am alone and wondering what the next minute, the next hour, may bring. George is away this week and its just Lauren and I here in this quiet house on the hill. George and I have weathered every crisis in Lauren’s life together. If one were to arise tonight, could I handle it alone? I could, but I don’t want to.

Lauren is having a problem settling down after the seizure. I go in and comfort her every few minutes, rearrange her covers, make sure she’s alright. It takes an hour before she goes back to sleep and she’s still restless. I lay awake now listening to her breathe. We’ve slept with a baby monitor next to the bed every night of her twenty-four years. Sometimes George or I will sleep in the spare room and take the monitor with us. You don’t sleep very well when you’re listening for a telltale change in breathing or the rhythmic thumping that indicates a seizure. You have to take a break once in awhile. I leave the light on in the hall. The darkness was too deep, a murky pool representing delay should I need to reach her.

I fall asleep around 6:30 and the alarm goes off at 7:00. I make a quick cup of tea in the hopes it will clear out the cobwebs of too little sleep and too much stress. I open Lauren’s door and see her dark, sleep-tumbled curls framing her peaceful face. She wakens as I ready her clothes for the day and open her blinds. She’s drowsy and quiet but she seems OK. I wish I could have let her sleep but she needs to have her seizure meds by 8:00. I sit her up and put on her clothes, take her to the bathroom and brush her teeth, wash her face, comb her hair. On our way out of the bedroom we stop for a spritz of perfume, and then make our way to the sun-filled kitchen. I prepare her breakfast and wonder - what will today bring?

Pessimistic About the Future

November 17, 2009

I recently read an article about pessimism and health. People who are optimistic handle health problems better and have a 16% lower risk of heart attack. Pessimists have a 19% higher risk of early death. Optimists have a healthier immune system and cope with pain better. What distinguishes an optimist from a pessimist? Optimists expect “positive future expectations”. Pessimists tend to take the least hopeful views of situations and often feel helpless to fix a problem.

So, I guess if you’re the parent of a child with developmental disabilities you’re doomed. With huge waiting lists for services and no guarantees that their children will be cared for when they can no longer provide that care, how can they be optimistic? How can they possibly have “positive future expectations” when there is so little to support them? How can they not feel “helpless to fix a problem” when families have neither the tools nor the resources to support the needs of their children?

Here in New Jersey our governor has announced the need for a $400 million mid-year budget cut. And, the Department of Developmental Disabilities is being asked to come up with their contribution. Families are dramatically underserved now. How much more can they be expected to give? The governor needs to hear from individuals with developmental disabilities and their families. He needs to hear about the serious situations that families are facing. He needs to know that any cut will impact individuals and families already overburdened. Please contact the governor immediately and tell him your story. Tell him about your family and why you cannot help but be pessimistic about the future. Tell him why individuals with developmental disabilities and their families have nothing left to give.

(Go to http://capwiz.com/thearc/state/main/?state=NJ for a quick and easy way to send your message to the governor.)

Lauren's LIfecare Book

November 12, 2009

I’m a worrier. I’ve really tried over the years to develop more of a devil-may-care attitude but it’s just not happening. The thing I probably worry about the most is Lauren’s care. The future is a looming cliff which will one day either provide shelter or crash down upon her without warning, destroying Lauren’s life as she knows it. Too dramatic? Too accurate, I think. I try and deal with my sense of impending doom by planning and preparing as much as possible. One of the tools I use is what I call Lauren’s Lifecare Book. It’s a three-ring binder that contains all the information someone would need to take over Lauren’s care if something should suddenly happen to me. I’m not just talking about the daily physical care (although there is info on that in the book as well). I’m referring more to the general management of Lauren’s life – the legal stuff, lists of doctors’ info, our wishes for Lauren’s future, etc.

The book is divided into seven sections:

1. A Vision Statement – This would tell someone what we envision Lauren would like the structure and quality of her life to be like. Here is her current statement:

Lauren will be recognized as a valuable and worthy member of her country, state, and community and the services that will allow her to function as a member of that community will be provided to her.

Lauren will be able to share her love of life and people by spending her days involved in projects that reflect her interests and allow her to give back to her community.

Lauren will be able to make choices about where she will live and with whom she will live with the same autonomy she would have had without disabilities.

Lauren will continue throughout her life to be a valued member of her immediate and extended family and will be included in all family activities.

Lauren will develop friendships that will enrich and widen her life experience.

2. Providers – Here I list the specialty, name, address and contact info for all doctors and medically-related providers. I also list all public and non-profit agencies that participate in Lauren’s services, and several of my fellow parent advocates that could help provide guidance.

3. Daily Care Info – In this section I list all the natural supports that her father and I provide. I also provide details on her schedule, medication, feeding, diet, and food preparation, bedtime routine, bathroom schedule, shower routine, communication needs, seizures, and other details - like the fact that she is left-handed.

4. Copy of our Wills – I want someone to be able to get their hands on this info quickly.

5. Guardianship – Copies of Lauren’s Letter of Guardianship is included here.

6. Power of Attorney – If we go away for more than a day I add a General Durable Power of Attorney. I keep a basic form in my computer that I can update with dates and names. So I can fill it out quickly, have it witnessed, and add it to the book when we need it.

7. Letter of Intent – Wills, guardianship documents, and powers of attorney only go so far. If something happened to me tomorrow who would I want to step in, how would I want things handled, what are our wishes for Lauren’s care? The person who will be her guardian may not be the best person to oversee her daily care. Should she stay in our home or should other arrangements be made? Making sure that your wishes are known and ensuring that people don’t assume that they know what you would have wanted is very important. This document is a tangible indication of your wishes.

I make sure that this book is always accessible. My family members know where it is kept. I make sure to update it as needed. It gives me a sense of security. It would speak for me if I could not be there. It is my attempt to protect Lauren from the day when that cliff begins to fall.

Mr. Turtle and the Simply Good Day

November 10, 2009

When Lauren was about a year and a half, a therapist told us to get a pull-toy for her. She was working on fine motor skills and thought it would be good for Lauren to work on this at home. I remember leaving Lauren in the car with my sister-in-law while I ran into Toys-r-Us to get a pull-toy. All I could find was a plastic turtle. So, Mr. Turtle became part of our family that day. Mr. Turtle became Lauren’s best friend, her talisman, her security “turtle”. He has traveled everywhere Lauren has ever been. He has gotten us through EEG’s and long waits in doctor’s offices. He has been to school and church and every family event or holiday that we have celebrated since he joined us. He has also been an ambassador of sorts. When people don’t know what to say to Lauren – they talk about the turtle. When small children stare at her more often than not I hear them ask their mothers, “What’s she playing with?” Mr. Turtle crosses boundaries that Lauren cannot.

That reaction of children to Lauren is always an interesting one. Adults have it down pretty well. You don’t catch them staring too often. If they do speak to us it’s usually to ask Lauren’s name and then to offer a hello or comment about her hat or something benign. Once in awhile we still get the “God Bless You” or “You must be so strong.” comments. While my toes are curling I usually just smile and walk a little faster. But children are purely honest in their reactions. They don’t disguise their curiosity. They just stare. They ask their mothers about Mr. Turtle and why she’s “in that chair”. They want to know why she’s rocking back and forth and why she’s drooling. My favorite occurred last week when a little boy looked at Lauren and then at his mother and said, “Why’s she smiling?”  I could imagine an adult asking that same question with many different meanings. “How could she possibly be smiling?” “What could she have to smile about?” Is she really smiling?” But from that little boy it was simple. The first thing he noticed was Lauren’s smile, not the wheels underneath her or the plastic turtle on her twenty-four year old lap. He just wanted to know, to possibly join in with, whatever was making Lauren smile. If his mother had not shushed him and hurried away, I would have told him, “Well, Lauren is having a good day and her Mr. Turtle is along for the ride. It’s just simply a good day.”

When Mom Gets Sick

November 5, 2009

Its day six in the invasion of the H1N1. I am still weak and fatigued and the Tamiflu is causing vertigo which I’m hoping ends with my last dose today. Even when I’m sick my priority has to be making sure that Lauren’s care is not affected. There is no calling in sick, taking a break or being selfish – it’s just not allowed. When you’re caring for a young woman with Lauren’s extensive needs you simply don’t have the luxury of prioritizing anything in your own life – even something as critical as your health. This illness has been no exception.

Walk with me through the last six days.

Day One (Saturday) – I wake at 4am and know that I’m in trouble - fever, chills, body ache, cough, nasty headache. It’s Halloween and our weekend DSP has taken the day off. I have someone filling in for a few hours. George is going to have to take over for the rest. He does a great job but he can’t do everything for Lauren that I do. Plus, he’s trying to take care of me. He’s an amazing specimen but he is seventy-three.

Day Two (Sunday) – Temperature 102, everything hurts, just want to sleep but I’m too uncomfortable. Lauren is scheduled for our local H1N1 clinic today. George and the DSP take her. They refuse to give her the Flumist (which her primary doctor had told me would be fine – but I now know she shouldn’t take). I’m terrified that Lauren will get what I have. Apparently the flu is rampant in our county. I read on the paperwork with the Tamiflu that I just got that it can also be used as a preventive - I’ll be on the phone in the morning.

Day Three (Monday) – Still in bed. The Tamiflu has calmed down the cough but not before I injured my ribs. Our daytime DSP had scheduled this day off to take care of some medical appointments. So, George is on duty again. He cancelled the one appointment he had and stayed home. I call Lauren’s doctor’s office. Her primary is now on vacation and no one else will prescribe the Tamiflu for her because “they didn’t see me” (I got sick on a weekend. They prescribed it over the phone.) Yet, they did prescribe it for Lauren’s DSP who is also a patient, after she simply called in and requested it. Double standard? You bet! I eventually got her neurologist to prescribe the Tamiflu. But all of this caused a 24 hour delay in her starting the medication and took more energy than I had.

Day Four (Tuesday) - I thought I would be a lot better by now – I’m not. I’ve been hibernating in my bedroom and only allowing George in with a mask. But I can hear Lauren making unhappy noises and I lay in bed wondering – Is she getting sick?, Is it just PMS? Is she upset wondering why I’ve disappeared on her? George is doing a wonderful job keeping everything rolling along, but so much of Lauren’s care is in the details which is my domain.

Day Five (Wednesday) - The fever is gone but I’m still aching and weak. The vertigo is not allowing me to move around much, bend over, or think very clearly and then there’s the nausea. I have found out that there’s another H1N1 clinic coming up. Can Lauren get the vaccine while she’s still on the Tamiflu? Is there a waiting period? I start making phone calls. County level – clueless. State hotline – not sure, transferred seven times (once to the webmaster). I spend untold minutes on hold. After being transferred to the same wrong line for the third time, I finally say, “Please, have a little pity. I’m sick. I need one simple question answered.” The young woman took down all the information and said that she would have someone call me back. It took another five hours, but I finally got my answer. You can get the vaccine 48 hours after the last dose of Tamiflu. Around 7 o’clock I check on Lauren and the DSP and realize that the DSP is not well. I have to send her home with a possible sinus infection. George had to go out-of-state to a meeting today but luckily he’s back by 7:30 or I don’t know what I would have done. I don’t have the strength or the balance to do a transfer or change Lauren’s clothes.

Day Six (Thursday) - Wow, once this flu gets its claws into you it does not want to let go. I still can’t be up for more than about a ½ hour. Lauren had a seizure at 6AM. The evening DSP calls to tell us that she’s still not feeling well and can’t get a doctor’s appointment till Friday. Lauren will need a shower tonight. I will not be able to do it and there’s no one else who can.

It’s always tough when you’re sick and can’t do the things you need to do. But, it’s another level of panic when you can’t do the things you must do. Will the DSP be in tomorrow? I doubt it. What will I do then?

Election Day

November 3, 2009

Today is Election Day and I have the flu. I’m past the “just kill me now” stage but the room still spins if I stand up for more than five minute so, I won’t make it to the polls today. And, can I share something with you? I’m kind of relieved. This was going to be another year that instead of leaving the voting booth proud to have participated in our secure and peaceful election process, I would be leaving feeling uneasy and with a vague sense of impending doom.

When my sample ballot arrived the other day I opened it to find that there were twelve gubernatorial candidates on the ballot – twelve. All twelve provided a statement regarding the issues important to their campaigns. The statements provided interesting ideas and worthwhile goals. They talked a lot about taxes. The discussed everything from climate change and education to marijuana legalization and gay rights. One noted that NJ should “encourage undocumented residents to lead (a) boycott” against Mexico. ...Hunh? What was missing was one idea, one acknowledgement, or even one word about the desperate need for services and an investment in the infrastructure that supports our residents with developmental disabilities and their families. Our incumbent governor came the closest. He talked about crime, education, health care, children, seniors, minorities, and “the most vulnerable”. Did he mean his fellow citizens with developmental disabilities? Maybe?

Statements put out by candidates running for our legislature voiced the same rhetoric that we have been hearing for years – “I would address this issue by making it a priority for additional funding when available”, “As the economy improves and revenues return, I am committed to looking for possible ways…”, “…any appropriations need to account for other priorities facing the state.” What will it take to make people with developmental disabilities a priority? Families are suffering. They are affected by all the woes that afflict our state at this time with the added stress and unrelenting, often overwhelming, need to provide care for their loved one with a developmental disability. A crisis is looming in our communities. Will only tragedy provide the motivation for the people that hold our children’s lives in their hands to realize what their priorities should have been?

Another Seizure

October 29, 2009

It is five a.m. when the soft, yet staccato rhythm suddenly awakens me and I throw off the covers. My right hand snatches for my glasses as my left is already reaching for the bedroom door. Lauren is having a seizure. I hit the hall light switch as I burst into her room. The light from the hall dimly illuminates my daughter’s thin body at war with the air around her. Her head and arms move to a beat that has no music, no joy. She is gripped by a formless menace that embodies terror and fear. As suddenly as it began, it ends. Perhaps sixty seconds have gone by. Yet it feels like far longer. Her body continues to jolt every few seconds, in what I call aftershocks, and then she quiets. Her eyes focus and questions linger in her gaze. She can’t understand what has just happened and I cannot explain it to her. How do you explain the electrical storm that rages her brain, racks her body, and leaves her confused and exhausted? Lauren’s understanding of life is simple. People love and care for her. She is safe and happy.

Lauren had her first seizure when she was a year and a half. She has been on pretty much every seizure medication and combination thereof that is available. Nothing has controlled her seizures. There were periods of time when she would have over twenty seizures a day. Her life and her parent’s life have been ruled by the prevention of, protection from, and devastating results of each occurrence. Almost four years ago a new seizure drug came on the market. At the time Lauren was having about fifteen seizures a month. The new drug has taken a huge bite out of that number and she is down to one or two a month now.

Lauren’s seizures are not lengthy and she recovers in due time. The most obvious after effect of a seizure, for Lauren, is fatigue and loss of appetite. The occurrence of a seizure means that Lauren will sleep most of the following day. When she was still in school, that meant that my schedule was cancelled. She would not be going to school and I would need to repeatedly wake her, and cajole her into eating, so that she could take her four daily doses of medication. Now that Lauren has her own DSPs, my schedule is not affected as much, and with the advent of time-released medications, she only has to take meds once a day.

What have been the other effects of literally hundreds of seizures over her 24 years? I don’t want to think about that. I look at pictures of her when she was three or four years old. There is a light, a connection with the world that is not there any more. Her eyes still sparkle, and her smile is infectious, but there is something different, something lost.

David Axelrod, presidential advisor and father of a young woman whose life has been forever devastated by epilepsy calls a seizure, "terrorism of the brain”, how apt a description. A seizure is a violent, brutal, and dramatic attack that shows no respect for the innocent it holds hostage. More people will die in this country from epilepsy this year than will die from breast cancer. The incidence of sudden death is twenty-four times more likely in someone who has epilepsy. Those facts are a heavy weight, a cloud on the horizon each and every day. Even though till now Lauren has recovered from each seizure and we have moved on with life, I know that any seizure may be a life changing moment. So that is why when I am awakened by the pernicious rhythm of yet another seizure, I never walk, I run.

For Your Convenience

October 27, 2009

What’s a girl to do? No, literally, what will Lauren do with her days as an adult? What are her interests? What will work for her? These are the questions I began asking as Lauren got close to the time she would need to leave the protective walls of her high school. I didn’t see a paying job in her future. Lauren doesn’t understand the concept of “earning” money and it is not important to her. What is important to her is being busy – which to Lauren means leaving her home, being around people, and being exposed to new sounds, sights, smells, and activities. I had looked at some local day program options and knew that Lauren would not be happy spending her days there. I knew we had to take the option of self-direction and developing something ourselves.

We live in a rural area. We awaken each morning to the calls of birds and deer grazing in our fields, but the wonders of nature hold no interest for Lauren. The busy streets of a more suburban location might hold more opportunities for activities, but the wandering lanes through woods and fields are where our family calls home, our comfort zone. Here is where I must create a future for Lauren.

Lauren loves to shop. Malls are her favorite places. She even enjoys the grocery store...and there’s always Wal-Mart. With that in mind, For Your Convenience was born.  For Your Convenience combines Lauren’s love of shopping with the opportunity to do something positive and productive in her community. I contacted two local offices and asked if the staff might need someone to do their grocery shopping errands for them once a week. Not their big, weekly shopping, rather the odds and ends you need every few days that eat into your lunch hour when you have to take the time to run to the store for them. Lauren and her DSP could pick up shopping lists, go to the grocery store for the items and deliver the groceries back to the office. Both offices agreed to give it a try.

I prepared shopping lists, laid out by aisle, for our “clients” to fill in with their needed items. Lauren and her DSP stop at the clients’ office on their way to the grocery store to pick up the lists. They have some petty cash with them and a highlighter to cross off the items as they add them to the cart. Each order is kept separate and rung up separately. If the client wants to use their store shopper’s card, they give it to Lauren with their list. Lauren and her DSP then return to the office, hand off the groceries, and are reimbursed by the client (we only use cash).

The one office that was using For Your Convenience dropped out after major staff changes, but the other office asked us to do two days instead of just one, so Lauren still puts in the same time shopping. She only does this twice a week because I believe doing it more would get boring for her. It’s been over two years since we started, For Your Convenience, and she seems quite happy with the routine we’ve established.

Of course, that leaves three full days and two half days for which we still need to develop activities. One morning a week, Lauren swims at the Y and her DSP has been great with filling up the rest of the time with the library, park, mall, and mom’s errands. I would like to come up with more concrete activities to add to her week, but I have been unable to so far. The faltering economy has slowed much of the growth in our area but has not stopped it completely. New stores, restaurants, and unfilled spaces continue to pop up every few months. Hopefully, one of them will spark an idea that will help fill in Lauren’s schedule and add purpose and meaning to her days.

In Support of the Direct Support Professional

October 22, 2009

In my last post I mentioned that I wish that we could pay Lauren’s staff better and that her budget didn’t allow for that. Providers also do not receive enough funding to pay Direct Support Professionals appropriately. Think of the duties that DSPs perform. They are responsible for individuals that for the most part cannot provide their own care. The DSP provides a full range of care, the intensity of which depends on an individual’s level of disability. They may be guiding an individual through every aspect of their day or they may be dressing, feeding, grooming, and providing all manner of personal care including toileting or diaper changing and bathing. They oversee medication, health status, transportation, activities, and promote inclusion in the community. They must respect an individual’s right to privacy, personal choice, and cultural differences. They must possess the skill necessary to help an individual communicate their needs and desires and may need to provide the support that will enable an individual to be employed. They must know how to deal with a myriad of behaviors and protect the individual as well as themselves. They must keep records and complete reports. And, they often fill the role of friend, confidante, or substitute parent when needed.

Lauren’s staff’s duties include: feeding, dressing, grooming, bathing, toileting, transfers, transportation, meal preparation, activity coordination, and range-of-motion exercises. They help Lauren interact with the community and help her communicate. They must be observant of her physical needs and always be prepared for seizures. And, they are the only other people in her life on a daily basis, besides her parents. They are her friends.

Fortunately for us, the staff that we currently have are enthusiastic, creative, and caring women. They are constantly coming to me with ideas for activities, new food options, and questions to help them understand Lauren and their jobs better. They are my eyes, and ears, and heart as Lauren tries to live a life restricted by so many challenges. I place my vulnerable, dependent only child in their hands everyday and they have earned my trust and confidence in their abilities. Lauren needs to be able to pay these women a salary that recognizes the important role that they play in her life. DSP salaries need to reflect the skills they require and the level of care that they provide.

Thanks to CareerBuilder.com I’ve been able to do some research on national average yearly incomes. According to CareerBuilder the national average yearly income for a DSP is $20,700. I put together a comparison of some other jobs and their national average yearly incomes. It is very interesting.

          Dishwasher                         $21,600
          Construction Flagger           $27,800
          Grocery Clerk                      $25,700
          Fast Food Worker                $19,800
          Receptionist                        $30,000
          Convenience Store Clerk      $23,800
          Ticket Taker                        $23,200
          Gas Station Attendant          $25,700
          Dog Groomer                       $28,700
          Crossing Guard                    $26,500
          Meter maid                          $30,700
          In-store Greeter                   $25,300

Please bear in mind that these are national averages and may not be accurate for your particular geographic area, but using the national average is the easiest way to do a comparison. And what does this comparison show? Direct Support Professionals do not receive payment for their work commensurate with the level of support that they provide. We need to be attracting caring, motivated individuals to rewarding careers as DSPs. We will never do that at a pay rate that does not allow them to support themselves or their families. Individuals with developmental disabilities are struggling to be valued citizens included in their communities. That struggle will not end if the people that support them are not appreciated and respected as well.

The Value of Natural Supports

October 20, 2009

As a young adult, Lauren is currently receiving a level of support through self-direction that makes her life and that of her parents manageable. We have enough funding to hire three part-time caregivers to staff three different shifts over the course of a week. I would like to be able to pay them better. I would like to be able to offer them health insurance. (The health insurance offered by the fiscal intermediary is a PPO with no employee contribution – an expensive, impractical option.) But, Lauren’s funding doesn’t stretch that far. But for today...we’re OK. But what about tomorrow?

I’m a planner. I am constantly making lists and hate surprises. So, I am always thinking about the next step and planning for the inevitable in Lauren’s life. At some point, it could be tomorrow, it could be ten years from now, neither my husband nor I will be able to provide her care. The natural supports, the supports that are provided by my husband and I, which make Lauren’s life possible, are numerous and varied. They are the glue, the safety net, the framework of Lauren’s life. What are these supports?

1. Unstaffed hours – any time that a staff member is not scheduled to work is the responsibility of   George and me. That includes staff vacations, their sick and personal days, and vacancies.

2. Housing – Lauren lives with us

3. Food – I purchase and prepare most of Lauren’s food. Lauren does not chew so everything she eats needs to be mashed, pureed, or very soft. I also develop things for her to eat. Like the rest of us, she gets bored eating the same thing all the time.

4. Transportation – Lauren needs a wheelchair accessible van to get around in. We live in the country so public transportation is not an option. We also pay for her gas, most of the vehicle maintenance, and her car insurance.

5. Household duties – I do Lauren’s laundry, purchase all of her clothing and personal care items, and clean  her room and bath. Lauren can only wear something once before it needs to be washed and often has several clothing changes a day, this amounts to a lot of laundry. Staff are beginning to help with some of the laundry chores.

6. Medical – I make and take Lauren to all of her medical appointments, I administer her medications and supervise her medication needs. We pay for a medigap policy, and tolls and parking expenses related  to medical appointments.

7. Financial – I am Lauren’s representative payee and manage her bank account

8. Clothing – Lauren pays for some of her clothing from her SS, but we pick up the rest of her clothing, diapers, and personal care products.

9. Service Management – I coordinate all of Lauren’s self-directed supports and oversee her health  insurance and medical bills. I hire, fire, and train all staff. I do all of the paperwork that supports Lauren’s life. I develop her and her staff’s schedules and activities.

10. Social – I manage all of Lauren’s social life i.e. family activities, outings, and I’m always trying to find opportunities for Lauren to participate in her community and develop friendships.

I can’t even begin to figure out the “replacement” value of the natural supports in Lauren’s life. At a minimum she would need at least two more full-time caregivers and funding for housing, food, and transportation. Lauren’s number on the waiting list for waiver services in NJ is 1609. Without a serious commitment of funding from the state (and in the current economic climate, how, likely is that), she may not receive a sufficient level of support for, possibly, twenty years. Her father and I could never put away enough money to provide for all that she will need. We want to take care of our beautiful girl forever. It’s just not possible.

In reality, George and I represent the only two people in Lauren’s life who have always chosen to be there for her.  And, that would have been the case even if we had another choice. Pretty much everyone else who is close to Lauren is a paid staff member. Her staff are wonderful, loving people, but they can, and have, just walked away. George and I are her guarantee that someone is there simply because they love her and care about her well-being and happiness. How do we replace that? Who will advocate for Lauren when we can’t? Lauren has no other family members who are involved in her life to a degree that they could take over our roles. And, I don’t foresee anyone stepping up to that task in the future.

So, how do I plan? I need options, ideas, and a promise that Lauren will have a future. The tools and answers I need to assure Lauren that her life will continue without me do not exist. If I don’t have those, what do I put on the list that will make up Lauren’s tomorrow?


October 15, 2009

One of the things you become very familiar with when your child has severe, multiple disabilities are specialists.  Specialists are those doctors that you are sent to when the questions surrounding your child's needs surpass the knowledge of their primary doctor.  Doctors have various types of personalities, just as you would find in the general population. But, in my experience, specialists, especially those that deal specifically with individuals with developmental disabilities, acquire a special level of "quirkiness" somewhere during those extra years of training.  Sometimes you are thankful for that quirkiness.  You aren't going to these doctors expecting good news.  So, an unusual sense of humor in a doctor may actually smooth you over some of the bumps.  An extra level of intensity may give you an extra amount of confidence in their abilities.  Long explanations of options, historical background, and an overview of any research being done anywhere by anyone may result in information overload, but at least you know he's on top of his game.  And, then there is the quirkiness that results in your staring at them, jaw hanging open, without a clue as to how to respond.  Such was the case yesterday when I took Lauren to the orthopedist.

Lauren wears AFOs - orthotics that support her ankles. They are made of a white plastic substance, lined with a foam-like material and range from her knees to the tips of her toes. Straps hold them on. They are hard, clunky, and hot. She's been wearing them since she was very small. Without them, the one ankle is not too bad, but the left really turns over until she is almost standing on the ankle bone. Lauren wears them when she is in her stander (two hours a day). She used to wear them all day when she was in school, but now that she's an adult, we give her a break from them when she's out traveling around in her wheelchair or relaxing at home. But during transfers (Lauren can stand but not balance), she could really use some support on that ankle. So...I made an appointment with her orthopedist. He's been treating her since her first pair of AFOs and is well known, well respected, and basically a nice guy. But why, when they are putting in all of those extra years of training to become the wonderful doctors that they are, do they not also train them (or train them better) in how to talk to patients and their families? I won't even go into the fact that he never actually said a word directly to Lauren, but in response to my question about a smaller, more comfortable orthotic I got the following response:

"Say you went to India" (yes, he said India – we can’t even go as far as the Jersey shore with Lauren and he’s talking about India). "Now, someone asks you to lie on a bed of nails – you’d do it, right?"(Ahhh, no.)  "You could do that. But what if someone asked you to lie on a bed of "nail"? You wouldn’t do that right?" (Good guess!)  "That nail would go right through your skin!" (Uhmmm, I know there’s probably some physics involved here but I’m just not all that sure that multiple nails wouldn’t go right through my skin either.)

So I asked, "And, your point is...?"

"Well, that’s why she needs the longer orthotic!" Right, I get it.....no, I don’t get it at all.  India, bed of nails, orthotics...am I missing something?

His point was that the longer orthotic (bed of nails) would provide more support and the shorter orthotic (bed of "nail") would not be as effective. I eventually figured that out. (Aren't you impressed!) Couldn’t he just have said that? We went halfway around the world and all I got out of it was virtual jet lag.

I wish he had spent some time listening to me talk. Listening to me explain how Lauren’s life had changed and why we were asking this question.  I wish he hadn’t spent the rest of his time with us discussing the affordability of Polish or Argentinian custom-made shoes over American (Lauren doesn’t even wear custom-made shoes). I hope that he didn’t go globe trotting with the other family who was there that day, who will have traveled for five hours just to see him.  I hope that they left with the information and direction they needed to care for their daughter, and a feeling that “this guy” was on top of his game.

Important People

October 12, 2009

Who are the important people in your life?  Your spouse, children, parents, close friends?  Are these the people you turn to when you have great news, a problem, when you feel lonely?  Do they make you feel needed, connected, valued?  What if most of the important people in your life were your employees?  Do you think the relationships would be the same?  Most of the important people in Lauren's life are employed by her - caregivers.  The important people in her life, the people she interacts with daily, the people who know what makes her laugh, and what makes her sad, are, primarily, her parents and three staff members.

She has extended family members.  But, they're busy, they don't see her often, they don't know her well.  There are the people she interacts with in the community, they may know her name, they may know she likes music, but they don't know much else about her.  There are her parent's friends, they know her history, they know her fondness for turtles, but they don't know she's left-handed or loves to eat fish with tartar sauce.  Over the years there have been other people who drifted into her life, but they would suddenly just disappear, without warning, like a snowflake on the palm of your hand.  They may have thought it didn't matter.  They may have thought Lauren wouldn't know the difference.  But, she did.  Lauren was sad when you left, when you never said goodbye, when she found out that you really weren't her friend.

Lauren can't reach out the way you or I can.  She can't ask you how your day was.  She can't help you decide what to wear on a first date or give you advice about your mother-in-law.  She can't call you up just to chat.  If people don't seek her out, make time for her, or include her in their lives, they will never become important people in her life.  And, they don't.  We once tried to start a circle of support for Lauren.  A few people came to the first meeting, some said they would and didn't, and I couldn't get anyone to commit to a second meeting.  I'm not going to beg people to be my child's friend.  I asked, I baked cookies, they were polite, and then they faded away.

People have very full lives.  I get that. So is mine.  They are not motivated to give of themselves to a young woman who appears as though she would have nothing to give back to them.  But, they are wrong.  It takes time, it takes understanding, but Lauren has much to give.  She is a great listener, she has strong opinions, she loves a good laugh, and she is loyal.  They don't know what they are missing.  They don't know that their lives would be richer if Lauren was an important person in their lives.

Designated Issues

October 9, 2009

A recent article in a national women's magazine discussed "designated issues".   A designated issue is defined as an issue dominating our thoughts so that we will not notice our other problems.  The writer states that designated issues "command inordinate mindshare" and "...allow the mind to stuff much greater terrors in relatively tidy packages."

Hmmm. Maybe I need to explore this..."much greater terrors"...I should find out what these are...shouldn't I?  OK, let's take a look at this theory.  What subject commands the majority of my waking worry moments?  No question - making sure that Lauren is cared for - staffing, medical, service management, daily needs, future planning...Oh wow, my heart is beating faster just making that list.  Now, what are the greater terrors that I'm avoiding?  Well, we can all think of possible terrors that we could worry about - health of self or spouse, economic tragedy, global warming, but since I take care of myself as best as I can, pay attention to my finances, and recycle and reuse. I really don't feel these things represent terrors in my life.

Maybe I'm just not getting this theory.  The writer states that we should be grateful for our designated issues and "sincerely thank them for containing your other worries."  She offers a process for finding your gratitude:  Sit quietly and imagine that your designated issue is gone, not available, not a problem.  Then ask yourself, "Now that I've fixed that, what problems do I still have to face?"  At this point all the scary, stressful parts of your life are supposed to spill out of your life in a "big, ungodly, mess."  According to the writer each attempt you make or success you have in fixing one of these scary parts will result in your designated issue becoming not as stressful and occupying less of your thoughts.

Let me give this a try.  All of the issues surrounding Lauren are gone...she has everything that she needs...she has people that love her in her life...she will receive quality care for the rest of her life...she will be comfortable, happy , and safe when I can no longer be there for her...ohmmmmm...ohmmmmm. Ahhh, this is nice.  I should do this more often.  I feel lighter.  Those funny lines between my eyebrows are gone.  I can actually take a deep breath!  But...let me continue.  What problems are left:  I'm getting older - can't do anything about that.  I can't keep my weight up (yes, I said up - and, I know, you don't want to hear about that being a "problem").  My parents are becoming more frail and needy - can't do anything more for them than I'm already doing.  George is starting to retire - have we prepared enough financially for that and to provide for Lauren...forever?  We have spent so much over the years to care for her, but what choice did we have?  And, then there is our home...how long will we be able to maintain it?  We built this house to fit Lauren's needs.  We're all very comfortable here...it works.  But it's a big house, not huge, but spacious.  It takes a lot of our time and energy to maintain it, and we're slowing down, physically and financially.  What will we do next?

You see, this is where the theory just falls apart for me.  Did you notice how even my other "scary, stressful parts" come back to Lauren?  What if your designated issue is your big, ungodly mess?  What if the designated issue steers the course of your life, impacts every decision that you make, and evades every attempt you have ever made to resolve it?  What if your designated issue is so overwhelming in scope and significance that everything else pales in comparison to it?

Tha writer continues, "If you have a designated issue, addressing other problems will (eventually) make it dry up and blow away."  If only.

A Revelation

September 18, 2009

Over the last week, we've had a houseguest.  Heidi is an old friend and a "physiotherapist", what we would call a physical therapist, in Denmark.  We haven't seen Heidi in about seven years - since Lauren was smaller and lighter.  Lauren received PT all through her school years...in school.  No one ever came to the house and said this is how to do this or do that.  We just figured out things the best we could as she grew.  Lauren has been receiving PT at home twice a month since she left school.  The therapist comes to us via a home health agency and Medicaid.  Her physician has written prescriptions for physical, occupational, and speech therapies.  But, we have only been able to get PT provided and at a frequency far less than the prescription indicates.  I shudder to think of how much Lauren's physical condition would have deteriorated if she was not receiving at least this much therapy and try not to think about how much better she might be if she was receiving all of the therapy the physician advises.

The therapist who had been coming to our home for the last two years (we have a new one now) saw Lauren's environment and watched us do transfers and utilize equipment.  We were never told, "There's an easier way", or "That needs to be adjusted."  Since Heidi arrived she has gently guided us into signifiantly easier methods of doing transfers, and adjusted equipment.  None of the changes themselves were dramatic - just the results.  I also believe they will ultimately result in safer transfers for Lauren.

How often as parents of children with developmental disabilities have we had to be the "experts" in areas we really know little or nothing about?  How often would our children have benefited from the help of someone who could, with respect for our singular knowledge of our own child, have offered knowledge or assistance in meeting their needs?  This past week has been a revelation in gaining knowledge in easier, safer, and smarter ways of meeting Lauren's physical care needs.

This not only benefits Lauren but has an impact on the health and safety of everyone of her caregivers.  I sit here with an ice pack on my back and concerned that I will not be able to make it through the outlet mall that Heidi is all excited about visiting tomorrow, (prices in the US seem to be about a third of what they are in Denmark).  I really don't want to disappoint her.  I did not have to be in this pain.  If a competent PT had spent even one day every year, or, be still my heart, every six months, with us as a family, we may have been handling Lauren very differently.  My, now chronic, back pain might not exist.  It would certainly have prevented the necessity of doctor's visits, x-rays, MRI's, chiropractors, and my own physical therapy.

Beginning the Caregiver Search

September 15, 2009

When we need to find a caregiver I usually place an ad in our local (county) paper. The ad would read something like this:
 "Charming young woman with disabilities seeks caregiver/companion. Upbeat, reliable individual will enjoy working in easy going family setting. Mon - Fri., 3 to 10:30pm. Personal care and lifting required. $/hr. Call xxx-xxx-xxxx."

That size ad will cost about $35.00 per day to run. I've explored advertising in papers other than our local one and ran up against exorbitant classified fees. It seems that you need to buy a "package" which includes a 30 day online listing. I don't want an online listing. I find that people looking for this type of position are either not very computer literate or do not own a computer. And, if people do use the online listings, I don't want to be answering the phone for 30 days. I called one paper to request "just a little print ad for one Sunday" and was told that they don't do that. If I want to buy the package, it's $300 - $400, depending on the paper.

I've checked out websites for caregivers such as http://www.rewardingwork.com/ and http://www.care.com/ but they don't have many or any listings from our area and require subscriptions which would seem to be a waste of money for us since they do not tend to serve our area.

 I also make up contact cards with information on the position. George, Lauren, and I hand out cards wherever we go - hairdressers, doctor's office, friends, etc. On the contact card I list a website that I started for Lauren called "All About Lauren". It is a very basic, not very well designed, but very informative few pages on who Lauren is, what her life is like, and what her caregiving needs are. It includes pictures and available job listings. Google hosts the site for free and it helps someone who may be interested to get a better picture of what the job would entail. We did have one applicant from this approach this time but she was not appropriate for the position.

Another option are job websites run by various ethnic groups. One example is a Polish website, http://www.bazrynka.com/ This particular site is used mainly by people in New York City and areas near the city in New Jersey. There are ads from all over, though. I have talked to some truly lovely people whenever I've placed an ad (free) but ...well, my last experience kind of sums up how well this site can meet our needs in the remote area of New Jersey that we live...

After a very frustrating day of phone interviews and in-person interviews that turned up no viable candidates, I decided to try Bazrynka once again. I had placed an ad a few weeks before and gotten no responses at all, but what the heck, I'll try it again. Couldn't hurt right? Keep reading. Now, remember we live in Northwestern New Jersey. There is no mass transit to speak of, a few infrequent buses in and out of the city in a couple parts of the county. Nothing closer than a twenty minute drive. I, very carefully, noted in the ad where we lived, that there was no mass transit, what the hours were for the position and that applicants must be legal and speak English well. Before nine o'clock the next morning the phone started ringing, and ringing, and ringing. By the end of the day I had over twenty responses. Unfortunately, none seemed to have read anything in the ad besides "caregiver". So...I spent the whole day telling some very nice people that, "No, having a passport does not mean that you are legal to work", "No, you cannot get a bus from Queens, Jersey City, Watchung, etc." and "No, this a Monday through Friday position - not a weekend position."

All of our hires since we started Real Life Choices have found us through the ads in our local paper except for this most recent one. We found Cori through her Mom, a respite worker for us for many years. When you hire anyone to work for you, they bring not only their talents and experience but also their personal issues and baggage. When you hire someone you don't know, you have no idea how their personal life may or may not affect their ability to effectively perform their job. That's true no matter what you're hiring someone to do. When you hire someone you know (we've known Cori for about 15 years), there are fewer chances for unpleasant surprises. You have a much better idea of what you are getting into. On the flip side, one of our other caregivers, Nancy, who we did not know before we hired her,has an adult daughter with physical disabilities. Because of this Nancy brings personal experience, understanding, and "accessibility" to her position in a way we had never experienced. Lauren can visit both of their homes because they are accessible. This has greatly increased Lauren's social capital. Most private homes are inaccessible to Lauren, including all of our own extended family.

So, no matter how you find your potential candidates, there will always be much to consider. Know your area, stay connected with your community, and mention your search to everyone that you think could be helpful...even a few you may not ordinarily consider. You may be surprised that the lady behind the deli counter that cuts your turkey just right, may want to help.