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 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?