Why We're Considering Moving Our Son to a Group Home

1185343_10200578588523788_2000617787_n When you have a child with differing abilities, there are many pills you must swallow — the diagnosis pill, the acceptance pill, the journey into special education pill. Some pills are a bit easier to swallow than others.

We’ve known for quite some time that our son, Zach, will never be able to live independently. He will require a lifetime of round-the-clock supervision and care. When he was diagnosed with Ring 22 syndrome and autism almost 17 years ago, we had no idea what the future would hold. Of course, we remained hopeful that through love and intervention our son would make amazing strides. We knew little about Ring 22 syndrome, and even the specialists we worked with had never had a patient with the condition. I found a group on the internet and learned quickly that, as with most things, there is a spectrum of how the syndrome manifests itself. There are commonalities: speech delay, cognitive concerns, behaviors consistent with autism spectrum disorder. I didn’t, however, know about  autism regression and never anticipated seeing some of the things that Zach was able to do fade away, never to be seen again. I never expected that he would take one step forward and then three steps back. We never envisioned that his needs would be so significant.

That all sounds so incredibly negative. Zach still surprises us every day, but the bottom line is, I have a soon-to-be 20-year-old who cannot do anything independently. I have a soon-to-be 20-year-old who needs assistance with all activities, who is nonverbal, who has no sense of danger, who would leave home and run into oncoming traffic, who could choke because he doesn’t eat properly, who still has sleeping difficulties, who has trouble entertaining himself, who eats things he shouldn’t, who will get into his feces. This is an awful picture, but these are the cold hard facts. Of course he has many wonderful qualities — he’s sweet, funny, adorable, tenacious, and I could go on and on. We love him in spite of and because of all of these things, but it scares the absolute sh*t out of me that someone who doesn’t know him and love him will not see past all the tough stuff to get to the good stuff. There are no words that can possibly describe the fear that overtakes me when I think of someone not seeing who Zach really is and only seeing him as a difficult client in their care.

In the early years, we never really talked about what the living arrangements for him would be in the future. When people would ask me, “Do you think he will be able to live on his own and take care of himself?” I always answered, “I don’t know, we will have to wait and see.”  But I knew. I knew it would never be. Yet another pill to swallow. We also came to the realization that we, as we age, would not be able to provide the level of constant care Zach will require.

When he was little it seemed like these rough decisions were so far away. Yet, in the blink of an eye, here we are, and the time has come to start the serious discussions of what we want for Zach’s future. Some may think we’re awful or selfish to think about moving Zach out. I suppose there is an element of selfishness — my husband, Mike, and I are ready to live as empty nesters and have a level of spontaneity in our lives that’s afforded to most our age. But I also feel we would be selfish to try and keep Zach here — with aging, tired, worn out parents. Some may be thinking that his older sister should take him to live with her once we can no longer do it. I will say vehemently that not only do I not expect her to do it, I don’t want her to do it. I want her to look out for him and make sure he’s being taken care of and treated well. But just as we want what’s best for Zach, we want what’s best for Emily. Our dream is that he be in a place where is is safe and happy. We feel that by starting now we can play an active roll in his adjustment to his new surroundings, take him on outings, bring him home for dinners, family events  and holidays.

Nothing about this decision is easy. It is by far the most difficult, heart wrenching and bitter pill we have to swallow.


This post is one of a series discussing this family’s decision to move their son to a group home. You can follow this journey on Monkey Business.

Want to end the stigma around disabilityLike us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

Find this story helpful? Share it with someone you care about.

Related to Ring 22 Syndrome

A mom holds a small newborn child

A Letter to the New Mom Facing a Bewildering Diagnosis

Dear Past Self, Seventeen years ago after three years of searching for answers, your son was given a diagnosis of Ring 22 syndrome and autism. Ring 22 is considered a rare disorder, and at the time of his diagnosis, not even the geneticist had ever met anyone with it. In fact, they wanted to use your son [...]

When We Got a Diagnosis I'd Never Even Heard Of

It’s funny how two words can be everything. Williams syndrome. I’d never heard of it. I left the specialist’s office with a list from a dated textbook filled with complex medical descriptions but not sure how serious Luke’s case was. I remember sitting in the car with the realization that the news we were given was real [...]
Michelle's two daughters

'What About Me?': How My 3-Year-Old Is Dealing With Her Sister's Autism

“Mommy, I have asthma,” my 3-year-old said to me. I answered, “Yes, you do,” “Mommy I have eczema.” Again I said, “Yes, you do.” Then my 3-year-old looked at me and said… “Zoey has autism.” I looked at her and said, “Yes, baby, she does!” My 3-year-old is having a hard time adjusting to all [...]

How My Son Taught Me About Joy With a Piece of Bread

I have a son with autism. Most days I forget. He’s just my sweet boy, and he’s so delightfully fun and tender that I completely forget there’s anything different about him. Then there are the days when every single thing is a hard fought battle — days when I’m ready for bed at 11 a.m., [...]