Special Needs Focus:

My brother’s senior picture. Leaving the public-school system left him facing a void and the
beginning of many problems.

Some people grieve their empty nest. Facebook is filled with sad posts from people mourning the passage of time and the leaving of their children for college. Others cry on their kids’ eighteenth birthdays, grieving the end of their kids’ childhood. But what if your child is never going to college, never going to rent their first apartment or get married and buy a home? What if your nest will always be full?

When you have a child with a severe intellectual disability, you’re robbed of the experience of shopping for dorm room supplies and waving goodbye as they walk off to find their classes. You won’t be watching them load up their belongings into the car to head off to their apartment. You won’t ever get to experience the freedom of having no caregiving responsibilities. As your friends plan their years of leisurely retirement, you know you’ll never be truly retired, you are parenting in perpetuity.

And then what will happen when you die? Who will your adult child live with, who will take care of them when you’re gone? Will anyone love and care for them as you do? I know these were questions that plagued my mother as she aged. They are typical questions that worry most parents of children with special needs. There is no one right solution for every family, but what are some of the options? In talking with my friends that have children with special needs and from my own experiences with my brother, I know there are no perfect choices and no actual “correct” solution. Each family must evaluate their situation and come to their own decisions.

Some people are lucky enough to find a group home that meets their needs. Many families choose having their family member with disabilities stay in the family home. If you’re lucky enough to have some assistance provided by the state, this choice is much more doable. Currently there are over 5,000 people on the list waiting for those services, approximately a ten-year wait. A Plan B is necessary for most families.

To be the parent of an adult with special needs means facing some tough decisions, and sometimes taking actions that aren’t easy. Speaking as an adult sibling and now guardian of a brother with special needs, I ask parents to not be in denial. Choose the best fit and make plans. It’s a fantasy to think you will live forever.

My mom during one of her frequent visits to my brother’s home.

My family went through some difficult struggles after my brother aged out of the public-school system. At twenty-one, he faced a void, days of nothingness with no purpose and no activity beyond what my aging parents tried valiantly to provide. Having a dual diagnosis of intellectual disabilities and mental illness made it even tougher to find a suitable home for my brother. After many years and rough heartbreaking issues, my parents realized they could no longer care for my brother at home. By this time my father was in his 80s and my brother was bigger, stronger, and had anger issues manifesting themselves in self-harm and physical violence towards other people.

After a series of bad placements, my brother went to live in an intermediate care facility. There’s a stigma associated with these larger facilities, but it’s a great fit for my brother. The staff has become like family, going beyond expectations to make it a true home, not just a facility. He has a job, a roommate he likes, activities, and good food (an important issue for my brother!).

But even after my brother was in a home where he was happy, my parents were never completely at peace. There were frequent visits, multiple overnights every month, about twenty phone calls a day and always emotional pain for my parents. To be the parent of an adult with special needs is to always carry a companion of worry. In some cases, like my mother’s, there may be an unspoken, but almost visible, shadow of guilt. She wanted him to live at home even though it was obvious his needs were better met elsewhere. They didn’t live together, but her heart and mind were always with him. My parents had a nest that was physically empty, but their mental nest was never empty.

I’m in multiple Facebook support groups for parents with children with special needs, and one of the most common ongoing themes is the question of what will happen after the parents die. The recurrent answer from almost all is, “We just can’t allow ourselves to die, we have to outlive our kids.” While part of me understands that emotion, as a sibling, I plead to the parents to take a more realistic, pro-active approach. Make a plan for the future because chances are very strong your child will outlive you. I thank my parents for finding a long-term solution for my brother before they died. Their deaths were tough for my brother but thank goodness, he was adjusted to his new home and found solace in his routine, friends, and activities.

Maybe my experiences as a sibling to a brother with intellectual disabilities is one reason I didn’t grieve the empty nest stage like so many of my friends did. Of course, I missed my kids, but I was grateful they were moving on to a stage of independence. I knew how very fortunate I was to be a mother with a nest that could be empty.

My brother doesn’t live with me but we talk almost every day and I visit frequently. I’m thankful he’s in a good place–figuratively and literally.