Father’s Day – An Aging Dad, A Vulnerable Daughter with Developmental Disabilities

The first greeting card that I picked up in the pharmacy showed a little girl dancing with her father, her small feet in red Mary Janes perched on his own. Adorable card? Yes, but totally inappropriate.  I was getting frustrated. This was the third store I had visited in my search for a card for my daughter to give her father for Father’s Day.
 
Card after card had unsuitable illustrations on the front, and inside, verses referring to the things that a Dad teaches a daughter, the journey to adulthood and independence, the shared adventures.....none of which were something Lauren could give her father.  None of them reflected my non-verbal, non-ambulatory daughter’s experience of being raised by her father, because at thirty-three, Lauren is still much like a very young child, but in an adult body.  She and her father have not shared slow dances or fast balls, learning to drive or celebrating a coveted new job.  How do you find the card that reflects the fact that this father’s daughter still needs the level of care that she did over thirty years ago, and that he, at eighty-three, is no longer physically capable of providing that care?  How do you find a card that does not simply provide a sad reminder of what hasn’t been, what they have not shared, and his fears for her future?
 
Those fears are something he lives with every day.  Although I am the one dealing with hiring, training, and managing the DSPs that provide Lauren’s care, her father watches from the sidelines.  He absorbs my frustration and concerns about the growing crisis in the DSP workforce.  He knows that we live on a knife edge of stability, the loss of one DSP will plunge Lauren into vacant shifts and uncertain care which could take months—or longer—to stabilize.  He knows that if something should happen to him, I will do what I can to help Lauren weather the uncertainty of minutes and hours with inadequate or unavailable care.  He also knows that if something happens to me, he does not have the ability to do the same.  Aging has robbed him of the capacity to function as he once did, but has not diminished the worry and doubt about the present and future well being of his much-loved daughter.
 
No matter how we plan or how hard we try, we cannot assure Lauren’s continued well being and safety as long as the DSP workforce crisis rages on unabated.  I cannot assure my daughter’s father that tomorrow, and all of the tomorrows he will not be here to watch over her, will find her safe in the care of someone who is ready and able to meet her needs.  This is the child who just moments after her birth stopped crying when she heard his voice.  This is the child that will watch football with him – unable to see the screen or understand the game – because he is sitting next to her.  This is the child he held through seizures, illnesses, and too many doctor’s visits to count.  This is the child, now a woman, he must leave to someone else to care for beyond his days.
 
There are many fathers out there this Father’s Day weekend who are worrying about the well being of their sons and daughters with developmental disabilities, worried because we do not have a workforce adequate in number to provide their care.  Parents have shared their stories; have shared their very real concerns.   Advocates have spoken up, and showed up, to underscore the need for action.  Legislators have listened to our pleas and pledged their support.  And yet, there is resistance from critical people who stand in the way of the state investment needed to begin to address this crisis.  I hope when those people celebrate with their own healthy, safe children this weekend, they take a moment to realize that disability does not discriminate.  It arrives without warning or consideration of wealth, status, or capability.  The typical life journey of their children is as much a matter of chance as the atypical and challenged journey of ours.  I hope they will be thankful.  I hope that in the weeks to come, they will look beyond politics and parties and simply do the right thing.
 
In the meantime, I will continue my search for a card that will allow Lauren to wish her devoted father a simple and sincere "Happy Father's Day!", on a day when he can still celebrate that his no-longer-little girl is still safe and cared for the way he hopes she always will be.

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