When our children were born, we had hopes and dreams for the fantastic parents we would be and for the wonderful life our children would have. We had a huge wrench thrown onto our plans. The second of our four children was born with a genetic disease called Familial Dysautonomia, which changed our lives dramatically.
We hadn’t planned on learning about this rare, neurological disease and the medical care, feeding tube, therapists, and the huge disruption to our life with his typical older brother who was sixteen months old at the time. But through trial and error, learn we did.
We hate the disease but love the child
We muddled through and while we hate the disease, we love the child. He is happy and sweet and did all of the things he had to do to stay healthy and alive in stride. We were brave enough to expand our team and have two more kids to add to the mix of organized chaos that was our family.
Somehow, we raised these children who are now all in their twenties. The neurotypical ones all went to college and Ben was home with us. He was happy and might have been content to live with us forever. But I had a dream that someday, somehow, he would move out. My husband and other children were skeptical, but I believed that if there was a will, there was a way.
We had to give my son the opportunity to “adult”
Just like with neurotypical children, there is a fine line between giving support and enabling. Sometimes it’s easier to coddle them, giving us the illusion that nothing bad can happen to them if they live under our roof. I had to get over my fear of something happening to my vulnerable son and instead give him the opportunity to “adult” and thrive.
I had no idea what moving out would be like for him. A group home? Supervised apartment living? Living with a sibling? Through Ben’s government funding, we signed up with a housing agency and began thinking about the possibilities. Throughout this process, Ben was reluctant, but I was gently relentless, periodically talking to him about one day moving out like his siblings.
I became a bit of an ear worm. I took him to see an apartment at a new building near our home where people of all abilities live together, called Main Street. We had a tour of an empty apartment, and we didn’t see any people, but it was the beginning of him being able to “see” what his future could look like.
This is a difficult exercise for him, so it is up to us to help him consider possibilities for his adult life. As one of his siblings pointed out, Ben is a creature of habit so he couldn’t imagine deviating from his routine in our home.
My son found an apartment mate
Last fall, our housing person told us that a young man in that building was looking for a roommate. We went to meet him and see the apartment. It wasn’t the right fit but through a series of unlikely events, Ben ended up getting an available apartment with a young man the same age (25) who we have known since the boys were toddlers.
His parents are very good friends of ours. His mom and I were completely on the same page about moving them out and we gently cajoled our husbands to get on board. They moved into their apartment on April first of this year.
It is a two-bedroom, two-bathroom apartment in a beautiful building that is about four years old. There is a washer and dryer in his unit, so he can do his laundry independently. It is light and airy with great community spaces.
My son’s new place is like a assisted living for people with disabilities
There are activities that Ben can attend, and I was shocked when he agreed to go to these on his own, without me having to escort him downstairs. He goes to hang outs, lunches, dinners, an exercise class, and other special events.
It’s like an assisted living situation for people living with disabilities but without any services to help with personal care. The motto is “bring your own independence.” People have varying degrees of support.
We have been blown away by Ben’s ability to care for himself so that it feels nothing short of a miracle. He loves his “man cave” and his roommate. They are helpful to and considerate of each other. While we are not comfortable with Ben using the stove or oven right now, he can use the microwave.
I am thrilled to be more of a consultant to my son now instead of a supervisor
I make sure his freezer is stocked with homemade dinners and sandwiches. He can decide what he wants for meals each day by simply taking them out of the freezer in the morning. He is able to prepare his own medications and knows when to take them. He tells me when he is running low on food, medication and whatever he needs to run his household.
Each week he looks at the activities that are offered and tells me what to sign him up for. Sometimes I suggest something new, which he may or may not wish to try. He has agency, which I respect and accept. I am thrilled to be more of a consultant to him instead of a supervisor.
I am confident my son will call me if there is an issue
A small apartment is better than our home because there are no stairs for him to navigate. The building is very safe, so I have peace of mind. Yes, I make sure to be in touch with him daily, but I am confident that he will call me if there is an issue.
I am happy to be his “support person” for now but as a well-meaning professional said when we interviewed about getting Ben some help, “you won’t be around forever.” Ouch. Obviously, I know that which is why I am exploring finding support that is useful to Ben without cramping his style.
We don’t live together so my son and I have to be more intentional about staying in touch
Something else I’ve become aware of is that Ben has to intentionally be in touch since we’re not in the same home. He is so sweet and generally starts the conversation with “Am I interrupting something? Quick question…” It warms my heart and amuses me every time.
Ben came home for a night or two at the beginning but now prefers to be at his apartment. We couldn’t be prouder of him and relish our new independence as well. I am aware that this didn’t happen in a vacuum. We couldn’t have gotten to this point without our family, all of our friends, professionals, school, camp, and other program staff who interacted with, loved, and cheered Ben on over these twenty-five years.
My son being part of another community feels miraculous
It was all of this teamwork that has led Ben to live as a semi-independent adult. It is not lost on us that many of our friends with adult children with disabilities do not have this option, or at least not yet.
I was with Ben recently in the lobby and no fewer than three people walked by and said, “Hi Ben.” He is part of a community, separate from our family. It feels like a small miracle.
Did I push him out? Maybe a little. But he didn’t stumble, he soared. It is great to see him proudly living his life as we all look at him with awe and wonder.
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