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.