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The Journey

February 12th, 2016

By Reneé Martin Valletutti

Of all the hats I have worn in my 47 years, I have always considered the “mom hat” the one of which I am most

proud.  When my first son Anthony was born over 21 years ago with intellectual, developmental, physical, and emotional disabilities, I anticipated a long and complex road ahead.  Transitions always seemed to be the muddiest parts of that road – slipping and sliding our way through entrance into the public school system, moving into junior high and then high school, and now at the end of a transitional program for young adults with disabilities.  We survived them all, but somehow I knew that this last transition – the one out of public school and the comforts of moms and dad’s houses – would be a true test of endurance.         

And so in keeping with the goal to always have our son on the most typical path possible (after all, I didn’t and don’t expect to have his younger brothers living at home past age 18), I began looking into housing options for our then 19 year old, even while he was still in his extended years of public school.  It just seemed like the right time.  He seemed to be wanting and needing his own space and certain degree of independence, and let’s face it, I was worn out with the schedule and also needing to look for employment and my own typical path.

I dreaded it.  I knew Anthony required 24/7 supervision, but as an advocate I was keenly aware of the limited options for finding the right housing, staff, funding and schedule mix.  But in keeping with that original goal, I started looking at rentals homes nearby, talking with other parents in our situation, and putting together a financial plan that would support Anthony’s move.  Something I would do with any of my three boys.  Good in theory, but a bit more complicated I found.  Unless you are already on the Home and Community Based Waiver in the state of Florida, or receiving any other type of funding support, paying for housing plus support is overwhelming.  In addition, finding the right mix of roommates and staff that are knowledgeable and caring, involved and enthusiastic, is no walk in the park.

Patience and perseverance are my best friends.  They may drift away every now and then, but working to keep them close is important every day.  During this time of exploring my son’s road to independence, I became involved with ROOF.  Researching and understanding housing options that are available for persons with disabilities is vital to creating that road to living life to the fullest for each individual.  It is more than care, or a bed, or doing your own shopping.  It is about discovering who you are, setting your own rules, and discovering what it means to be one’s own self.  Having a resource like ROOF to help guide families and individuals down that path is invaluable.

After a couple years, a couple houses, a couple new roommates, and a change up in staff, Anthony is settled in to his new home and new routine.  We experienced many potholes in the road, and anticipate the speed bumps yet to come.  But when I look at a young man who has matured, discovered his own strengths and weaknesses, and who celebrates his own level of independence, I rejoice in the journey.  And I wouldn’t trade it for that dry, smooth, well-worn path for anything. 

Renee is currently serving on the ROOF Board of Directors and has been working as an advocate for people with disabilities for nearly 20 years.