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?

Specialists

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.