This is our group home story. A decision woven with uncertainty, love, and, ultimately, acceptance. Was the group home decision also a decision of Letting Go? These are frequent questions I receive from families and podcast hosts, and a story worth sharing. How we went from It’s Never Happening to a Leap of Faith. An Excerpt from Raising Jess: A Story of Hope.

NEVER HAPPENING

When Jess was first diagnosed, I had horrible “day-mares” (I was awake) about babies left alone in Willowbrook State Institution.  If you grew up on Long Island or in the New York Metro area, you knew about Willowbrook.  The State Institution existed from 1947-1987 for children with intellectual disabilities but in those days, they classified the children as mentally retarded, or worse descriptors.  Although the school was supposed to house 4,000 individuals, it ultimately had a population of 6,000.  Conditions were appalling, and it closed in 1987 when federal civil rights actions started protecting individuals with disabilities.

At night, I would lay in bed and think horrific thoughts and made a vow that Jess would never go into a group home. Mitch was on the same page as me, although I am not sure that he was going through the same Willowbrook scenarios that ruminated like a looping video in my mind.

Reality is Looming

All through Jessica’s childhood, Mitch and I took care of all Jessica’s needs, naively thinking Jess would never move into a group home.  As the years progressed and Jessica and we “matured” the realization of a group home became a reality.

The decision to move into a certified residence is monumental. You feel like you are giving up, no longer willing or able to provide care. Emotions of guilt, sorrow, relief (yes, there is a bit of relief), uncertainty, and excitement preoccupied our thoughts. We must face the fact that we will not live forever, and finding the right home for Jess was key to all future planning. Otherwise, what is the choice?

Choices

Do we ask Jessica’s siblings, Carly and Alex, to take care of Jess?  Do we wait until we are so frail that an emergency placement in a random facility is the only remaining option? Doesn’t Jess have the right to leave her parents’ house and live with peers?

Mitch and I needed to do this when we were clearheaded and however painful the decision was, we knew that ultimately getting Jessica into a home in our community, with supports that we wanted in place, was key to her future and ours.

 

Letting Go

I think our main fear of letting go was: LETTING GO! What did it signify?

Did it mean that we would no longer be Jessica’s parents? Or that Jess would no longer go to the market with me? Would our visits to Jess be limited? No to all the above.

So, what did letting go signify?  It entails none of the above. We still can be as much a part of Jessica’s life as we choose.  We are still her parents; she can run errands with me (I don’t even like running errands with myself!), we can go to Temple together, to the movies and theater, and she can have dinner at the house.  It also means that we are planning for Jessica’s future, when we are not there to care for every need.

Leap of Faith

How did our transition start?  How does a family take the leap of faith?  For us, it was a gentle stroll towards the inevitable.  This was a slow transition that coincided with our ability to accept the next phase of parenting Jess.

Sometime around 2004, two advocates initiated a local Group Home Committee.  I joined this group, still thinking that Jess and we were not ready for the move, but perhaps I can lend my special education and community resource expertise from my work connections to this group. 

Time went on, and the leaders asked for a sub-committee of families who were ready to start the first, as we now call it, Ladies Group Home.  OK, I joined this group, but Mitch and I were still not ready; at least, we were not prepared to admit we were ready! 

Getting Closer

Fast forward to May 2006!  The group home is on the way to completion.  We have five women, of which Jessica is one, who will move into their new home.  We think we are ready for Jessica and our family to make this life-changing transition.

Our sub-committee met for approximately two years and became each other’s extended family. We felt confident that each of us would also watch over the four other women in the house. I believe the time it took to bond and trust our fellow group home members helped ease our transition to a new reality.

We worked with the largest human service agency in our region, People Inc. We chose them because we believed they had the experience and knowledge about building group homes and would be the most flexible to meet our needs.  This organization has shown respect for our traditions.  They have worked diligently to ensure that each of our daughters receives proper services, has a smooth adjustment, and will live a satisfying life in their new home.

I wrote the following in May of 2007:

Jess is moving in 2 months ~ Monday to Friday morning…6 am, roll out of bed…make lunch for our daughter, change her undergarments, dress her for the day, feed her breakfast, juice, vitamins, medications, comb hair, brush teeth and send her off to school by 7 am….Total care and assistance with all daily life skills – that is what Mitch and I did – we cared for Jess and assisted with every task one needs for daily living …similar to the care of an infant or toddler. At 25, Jessica was moving into her own home.  Hard as it may be to believe, in many respects, we would miss the daily care. 

Today, I changed all of Jessica’s winter clothes, put them in boxes – brought out the summer clothing and put them in Jessica’s drawers. The reality was that I wouldn’t be doing this anymore.  She will have “staff”; personal care assistants who will provide the tasks of daily life. They will dress and feed Jessica, administer medications, and handle her daily needs.  And we will miss this too…

We Will Miss This Too

We will long for the constant humming in our house; Jess can hum about 25 tunes (and counting).  No matter how gloomy the day – we have constant music in our home…We will miss the persistent  grabs for a hug…we will miss the cheek turned towards us, gesturing a kiss, her hands reaching for a dog and her constant smile and good cheer….

What will I do for dinner every night…for 25 years, I have been feeding Jess and me at the same time …? I’ve gotten pretty good at it –where will that skill go?   My husband and I joke that nobody can change a brief faster than us – we have 25 years of practice….I don’t know where or when the challenge would ever come up, but I am sure we would win…and yes…we will miss that, too….

Hmmm?

I have a monitor in our room. I listen and hear everything in Jessica’s room every night, but now I will only be listening to the loud snoring beside me….do I still need the intercom — I guess not….in fact, now I may feel comfortable wearing earplugs to eradicate the snoring. Previously, I didn’t dare muffle any potential, unusual sounds from the monitor.  This leads me to think that my husband and I are always on call, even when sleeping – and that will change, too.  What will we do with that energy?  Hmmm….

I think we are well known in our neighborhood – we are the family with three dogs and one young singing lady in a wheelchair – and we walk, we walk a lot – and I will miss that, as well.

Doctor Appointments

I go to every doctor appointment, dentist appointment, neurologist, endocrinologist, primary care physician, ear, nose, and throat specialist, and physiatrist (definition: A physician who specializes in physical medicine. Who knew there was such a field?) Will I continue to go to these appointments?  I was told that many families do not attend routine appointments; instead, they receive a follow-up call.  Will I become the follow-up call or continue to go to every appointment? Most likely, I will continue to actively participate with her physicians. I like talking to the doctors, need to know what is going on – and I will miss that Jess can now go to an appointment regardless of “my” schedule.

Jess is moving into a group home this summer….she’s 25 and well, we are the age a parent would be when they have a child of 25…it’s time… It is time for Jess to learn how to live as an adult woman, who needs assistance. Time for my husband and I to begin to let go of the physical daily care.

Jess has a Phone Number

The group home is less than two miles from our home…we will be close…we will still be her guardians, a presence in her daily life, her loving parents, and still be on-call…. Yet, there will be enormous changes. Many we haven’t even thought of yet…

The other day, I went to visit the house, which is almost complete, and was given Jessica’s phone number.  It was a peculiar feeling to enter Jessica’s number into my cell phone – she would not share our phone number for the first time.  I never thought about Jessica having her own phone number.     

Our other two children are now young adults, living in the dorms — we always anticipated and expected their independence — we knew and embraced that if we did our job well, they could live independently. We did not allow ourselves, until a few years ago, to consider that Jess was going to move, as well. Was it denial? What were we thinking? Was it possible that we would be able to provide daily care forever? No, none of the above; it was just hard to accept that there would be a point when it was time to let Jess move with her peers, enjoy her level of independence, and have her own phone number.

Mothering

I was thinking about all the ways my Mothering will be different, or maybe it’s just getting close to the moving date…and reality is setting in…things will be changing….and in many ways, we will miss our old life…

The Beginning

I wrote the above before Jessica moved in and didn’t know how life would change from that point – but really, do we ever know?  It took a while for me to find myself; as I said, I identified myself as Mom, who had a 24/7 responsibility.  Who was I now? Who were Mitch and I as a couple? We needed to find that out – and so will you as you continue reading our journey in Raising Jess: A Story of Hope or

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