Ring 22 Syndrome

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    Michelle Rice

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

    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 disability? Like us on Facebook . And sign up for what we hope will be your favorite thing to  read at night.

    Michelle Rice

    A Letter to the New Mom Facing an Autism and a Rare Disorder 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 for information and research. I remember that day well, the day of diagnosis. You had been getting test results back, and as each one came back OK, you thought to yourself, “This is just a developmental bump in the road, maybe he is really OK.” Then on the last day — the day you thought you were home free — the neurologist handed you the sheet of paper showing the diagnosis of Ring 22 syndrome, a spontaneous mutation, a rare occurrence. You did not take it well. You became sad and disheartened, and there were many tears, perhaps even some depression. You were desperate for information and desperate to know what the future would hold for your son and your family. I wish I could have shown you the crystal ball; I wish I could have told you then and that you would have believed me — it was all going to be OK. Not always easy, but OK. I wish I could have told you that through all of the pain and heartache there would also be moments of great joy and untold blessings that you never thought would come your way. Would you have believed that you would laugh again, that you would have fun and enjoy life? Would you have believed me then that you would find strength that you never knew you had? Would you have believed that your career, many of your friends and the life you lived would be a beautiful outcome of what seemed to be the most horrific day of your life? Would you have believed that it would make your entire family stronger? That it would give your daughter strength and determination and motivation? That it would have an affect on her career choices, her ability to interact with those with differing abilities and also bring her to some of the most important people in her life? I wish I could have shown you then and I wish you would have believed me  — that through it all you would enjoy a most amazing journey with your family. As you read this seventeen years later, you now know what I did all along. You are a force to be reckoned with; you are stronger and more capable then you ever imagined. There were times you thought you could never do it, but you just had to look at your son and feel the love in your heart and you did it… and you will continue to do it. You did not realize it then, but I know you know now that no diagnosis or label will ever take precedent over the label he was given on the day of his birth: son. Keep up the good work! XO, Your Very Intuitive Future Self The Mighty is asking its readers this question: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? If you’d like to participate, please send a blog post to community@themighty.com. Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio. Want to end the stigma around disability? Like us on Facebook. And sign up for what we hope will be your favorite thing to read at night .