Dinner at Lauren's House

June 29, 2011

Lauren ate her first dinner in her new home yesterday. She seems very comfortable there. The home is almost finished, just some outdoor things to do. The inside is done except for a bit of decorating. The house has physically met all of my expectations. I don’t know what Lauren’s expectations are or if she has expectations. For most of her life she has been, pretty much, along for the ride, at the mercy of the whims of the people who care for her. I don’t know if she dreamed of gaining her independence, moving on to an adult life, but she seems to be happy with the opportunity with which we are presenting her.

After dinner, Lauren reclined on her new sofa, a big smile on her face. Her music was on the stereo, TV yet to be installed (Finding my way through the complexities of cable versus Direct TV, and their associated “bundles”, may have been harder than figuring out Lauren’s budget.). The sun streamed in through the windows and it looked as if all was right in her world. I hope it will always be like that.

Surviving the Frustration

June 23, 2011

Between moments of frustration at the constant delays in getting Lauren’s home completed, I live in a state of barely suppressed glee. I’m incredibly thankful for the opportunity for Lauren to get her own home and excited about what the future could now hold for me without the constant restrictions of caring for a young woman with significant disabilities. Today, I met two people who were a sobering reminder of just what a miracle it is that Lauren will have her own home at the age of twenty-five and a frustrating example of how truly little services and resources have progressed since I became an advocate twenty some years ago.

I drove two hours south early this morning and two plus hours back in torrential rain this afternoon to attend a meeting of the Family Support Coalition of New Jersey. A representative from the state spoke at the meeting about the upcoming changes in how Medicaid will be provided in the future. Two people, parents of a twenty-three year old young woman with significant multiple disabilities, voiced their frustration, sadness, and possibly despair about not only the state of their lives now, but also the view of their future. While discussing the often cumbersome and costly Medicaid requirements for background checks, the mother expressed her concern that the state seemed to be making every effort to protect her child from potential harm from a hired caregiver, “But,” she said, “who protects my child from me?” Her daughter receives a few hours of care a week through Medicaid. They have been offered one weekend a year of respite. The mother is providing non-stop care and wonders that when she is exhausted, frustrated, and in despair – “Who protects my child from me?” I’m sure she is not voicing any intent to harm her child, nor does she want the state to have a say in how she cares for her child, rather, she is voicing her fear about her own limitations. We all have them. But state services neither recognize the limitations, nor the contributions, of families caring for their children with significant and serious care needs.

This couple is also frustrated that while the state seemingly ignores their needs, should they have the opportunity to hire someone to care for their child with Medicaid funds, the state would not rely on their judgment in who they hire, but would require a background check even if they were hiring, say, a cousin that one of them had known for 40 years. They are confused and angry. Who can blame them? On one hand the state is telling them that they are responsible for providing and directing their child’s care, and on the other hand, that they are not.

I become involved in the Coalition seventeen years ago, when we first had legislation in place to support services that would prevent premature out of home placements, to support families in their efforts to care for the varied and exhausting needs of their children with developmental disabilities, and that would encourage the development of services families desperately needed. We’ve worked tirelessly, sat in countless meetings, and been the best advocates we could be, yet still, families are not close to receiving the services that they need.

So, today was a sobering reminder of the work yet left to do. Families would be experiencing less despair, frustration, and fear if they could at least have hope, if they could simply have hope. How much harder is the journey if you don’t know your destination, if there are no signposts or maps to guide your way, if you are making your journey alone? I was reminded today that for most families, that is the journey that they are on. How blessed am I to be frustrated, not because there is no hope, but because the rain has delayed us another day? This I can survive, but I worry how long many other families can survive the cause of their frustration.

Turning a House into a Home

June 17, 2011

We are getting closer.  Not as quickly as I'd like, but we're making progress toward finishing Lauren's home.  I've spent most of the last two weeks painting.  It's a hateful job, but it does look wonderful.  Shades of ylang ylang, soft petal, harmony, and kangaroo (Where do they get these names?) have warmed the walls and toned down the stark white that they were painted when the home arrived.

The major holdup is the garage which is being built onsite.  For some reason ??? the subcontractor doesn't feel the sense of urgency to GET IT DONE!! that I do.  Its going to take at least two more weeks, if I'm lucky.  In the meantime, I'll continue to get things organized and set up inside.

For the first time yesterday, Lauren saw her new home.  She became very quiet, almost wary when she first entered.  Then she suddenly looked up and started giggling.  After a tour of all of the rooms, she ate lunch at her new snack bar.  I don't know if she connected with the space or it was just a new place to be.  I'm sure when all her things are around her this house will be someplace where she can feel comfortable.  It's up to me turn this house into a home, Lauren's home.

Starting the Rest of My Life

June 3, 2011

There’s a line in the movie, When Harry Met Sally, where Billy Crystal’s character says something like, “When you figure out what you want to do with the rest of your life, you want the rest of your life to start as soon as possible.” That is exactly how I’ve been feeling lately. Now that Lauren’s home is in place, it seems more like a reality than it did when it was, basically, a figment of my imagination. This is really going to happen! Then what?

I’ve noticed a subtle shift in the way I frame the days ahead in my mind and in conversations with my husband. Things we could never do before, or at least in the last twenty-five years, will now be possible. We CAN make last minute plans. We COULD take a spur of the moment trip. We will have NO CURFEW (we always had to be home by the end of a caregiver’s shift. Unlike Cinderella, we only get to stay out until ten.). And, if we do stay out late, we can sleep in the next morning!! Our schedule will no longer revolve around Lauren’s needs. My husband or I can do things independently without concern for the burden of care we may be placing on the other.

The evolution of this change in mindset has been very gradual. It started out with the harder than I imagined necessity of trying to wrap my mind around the changes that will happen when Lauren is no longer living with us. It was a somewhat surreal experience to accept and process the freedom I will soon have – unlike anything I have experienced in my life, (overprotective, old-fashioned parents, married young by today’s standards, long boring story, blah, blah). Soon after the reality began to finally sink in, I started to blurt out things like, “Heh, you know what we could do?” and “Wow, I’ll be able to.....” And now, I’m about to cross the threshold of that hard-to-imagine, monumental change.

So now that I see that “the rest of my life” is so very close, I can’t wait to get there. In the next week I’ll be painting (Please, God, don’t let it take longer than that – five gallons of paint – yikes) and decorating and dealing with the last minute details. By this time next month, Lauren and I could be living “the rest of our lives” – Yippeeeeeee!