Harriet’s younger brother, Archie, was diagnosed as insane at a young age. Because of that diagnosis, Archie would spend the vast majority of his life in cold, sterile state-run institutions. Institutional staff considered Archie untrainable. He was housed with adults, and did not have any friends to speak of. Harriet visited him regularly, took him home for dinner, and took advantage of Archie’s passion to tidy up her home.
Many years later, when Harriet read an article about autism, it clicked. Thinking Archie was in fact autistic, she had him re-evaluated. Harriet’s suspicions were confirmed. Archie was sent to a group home, where he spent the last years of his life. He had his own room along with a semi-private bath. Archie developed hobbies, took trips, and learned to take care of himself. Through it all, Harriet continued her visits and never gave up hope.
Archie died at the age of 83 in 1997. Had it not been for his sister, his life would have been drastically different. In that respect, Archie is like a lot of autistic individuals whose siblings play a major role in their lives. Often, that role comes with considerable responsibility and tough choices, especially later in life.
“…I know I’ll have to marry someone who will help me when it comes time to care for my brother. I don’t know the options.” “I would watch him but there is no way I can do it alone. I need people to help me.” “Having my brother living with me would put a tremendous strain on my relationship with my spouse.” “Now I wonder if I could handle giving birth to a disabled child, knowing what I know now.”
These concerns, almost verbatim, come from different siblings who have a brother or sister with autism. Often, as siblings grow older, they find themselves worrying about the future; and what will happen when their parents’ health fails and they pass on. When Pat and I were raising Jimmy, this was the last thing on our minds. But as we become senior citizens, we find ourselves thinking more and more about how Jimmy’s sisters, Katie and Suzy, will be impacted “down the road.” Right now, we are working on overcoming our reluctance to talk about this, and putting plans in place.
Actually, we have been planning Jimmy’s future for some time now. In addition to Pat and me, there are three other key components to this plan. When we are no longer able to oversee this process, his sisters will step in. In no uncertain terms, Katie and Suzy have told us they want to do this, together. Secondly is Linwood. Linwood operates a nearby group home. Since he was 21, Jimmy has lived there with two other autistic men, and live-in staff. Simply put, it is Jimmy’s home away from home, and I don’t see this changing anytime soon. The last big component of this plan is Jimmy himself. Pat and I, and Suzy and Katie constantly visit Jimmy, check up on him, and seek his input. He is more than capable of expressing his needs and wants to us; with others it can sometimes be a challenge. Any decision about Jimmy’s future rests in large part with Jimmy.
“What happens when we die?” is not a question that keeps Pat and me up at night. When we leave this earth, we know that Jimmy will be fine. Katie and Suzy have made that very clear; with Jimmy’s input, of course.
Please note: I am currently writing a book about my entire family and how we have grown over the years, in large part because of Jimmy. My son Jimmy is a middle-aged adult on the autism spectrum. The voices and perspectives of my two daughters and wife as well as other friends of Jimmy are included throughout. It is a real, uplifting, and remarkable story; one which I have wanted to share for a long time. The book will be published later this year.
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Rich this is beautiful! You and your family are so blessed. I think about you all often. It has always been a blessing to me to know you all. I know I haven’t seen you all in a long time but you all are very dear to me. I love Jimmy and all of you. Jimmy was always such a sweet boy and a joy to be around at the skating rink. Even when he would sit with me at the ticket window ripping up paper and napkins. When he ripped up the last one I would get him more. Just to see the joy on his face was good for me! To watch him learn to skate and the happiness on his face was just incredible. The fact that you and Pat exposed him to everything ‘normal’ children did was in my opinion the best thing any parent could do for their special needs child. You and Pat were always such an inspiration to me. The love between the two of you and for your children was awesome! The love Katy and Suzy expressed for Jimmy was awesome! All that comes back to the great parents the three of them have. They are so lucky to have you and Pat. I loved all the conversations Pat and I had during those roller rink years! Never once did I ever hear a negative thing from any of you! Much love and respect to you and your family!