Recently, while doing a training, the subject came up around age appropriateness. The organization I was doing Autism training for said they have been having lots of discussions around age appropriateness, especially with their regulatory body. I thought this week I would share my views on the subject. My views are not meant to offend but rather simply represent the opinions I have formed in just under 30 years of working with individuals in care, most whom have some level of intellectual or developmental disability. I also will admit, some of these opinions very much represent the hopes I have for my son Tyler who has fragile X syndrome and though only nine, may one day have to adjust his life around the opinions of those who control the regulatory and funding systems. Hopefully, by then the world will be a better place that’s less worrisome and judgmental.
First, let me get out of the way my first belief: People have the right to like whatever they like no matter what other people think. I know adults who wear nothing but super hero t-shirts, read comics, collect action figures, and watch PG movies on a regular basis. In fact, I am one of them. As I sit in my office typing, it is filled with reminders, memorabilia, and artifacts of what some may consider children’s toys and movies. Harry Potter, Lord of the Rings, Marvel and Disney are a huge part of my life at 47. Wearing my Captain America t-shirt as I type makes me feel strong and ready to tackle this blog! Many times, these characters represent hope. In some cases, they represent values we would like to see more of in ourselves. Please do not think that they do not represent the exact same thing in the people who are in care. Perhaps it may be that the only hope they currently have is found in some super hero or Disney character. Why would we want to take that away in the name of “age appropriateness”?
Second, person centered planning, in my opinion, trumps age appropriateness. In recent decades, advocacy rights groups have fought for the right of people with disabilities to have control over their own lives and care. We have moved into the world of self advocacy and person centered planning. How can we then say that we want to give people the right to choose…unless we deem it not to be age appropriate? Making my own choices has led to knowledge. Some of my knowledge came from making bad choices. If we do not let people choose, even in ways we consider wrong, we do not really give people freedom. We in turn do not give people the opportunity to learn and grow. If we are a care giver, we should be there to support people when they need it because of making a bad choice, not pointing out “I told you so!”
Third, most of the clients we are demanding be more age appropriate have never been allowed or been given opportunities to be exposed to any type of age appropriate items or events. Let me try to sum it up in two paragraphs even though I could probably write 15 pages on this very subject. Individuals in care often time lack communications skills. The lack of communication skills leads to a lack of social opportunities outside of care. The decreased social opportunities lead to a decrease in exposure to available activities born out of social circles. Many of our individuals have no friends outside of friends who are at their facility who also lack exposure to “adult appropriate” hobbies. They lack work opportunities out in the community where they make friends with co-workers who expose them to new “adult appropriate” events.
Let me explain a real life example. I have a co-worker who has become one of my closest friends. Over the course of our friendship and working relationship we have communicated about many similar likes and dislikes. We have a similar love for music. He especially loves his music played on vinyl. I have not really been exposed to vinyl since cassette tapes arrived. I have followed the trends: cassette tape, cd’s, digital. However, through our friendship I now have a whole new love for music played on vinyl. He gave me a turn table and has opened a whole new world for me. What could be an expensive world but one I really have enjoyed. This scenario does not occur in the vast majority of people in care. They do not have the same exposures and therefore do not grow out of what they learned at an early age to be activities they enjoy. Side note: He and I also share a love for many of the same things which would be questioned as age appropriate. There is a very real possibility of he and I ending up some day dressed like Jedi Knights and attending Comic Con!!
I have heard a lot of arguments about “there is a right time and place”. I can buy that. I think that is part of the teachable moments. But I think it is still trumped by personal preference and in cases of emotional safety. Recently, Tyler participated in Miracle League baseball. At age nine he went out onto the field full of fear and anxiety holding onto a stuffed Winnie the Pooh and Tigger. I have watched a lot of youth baseball in my day and have never ever seen another kid who was nine on the field holding a stuffed Disney character. Was it age appropriate for a nine year old? Probably not. Was it the right time and place for Disney characters? Many would say, no. However, we would never have gotten Tyler out on the field without them. Miracle league has exposed him to a new skill set, new friends, and a life long opportunity for enjoyment. We did not fight the age appropriate battle only to lose the bigger war on opportunities and friendships. Oh, and by the way, the next time he played he was willing to leave his stuffed friends in the van. The third time they did not even have to come. Had he wanted them, however, they would have been allowed.
I remember hearing a story years ago about an older woman with significant intellectual disabilities who would carry a doll with her wherever she went. It was later discovered that all she wanted was to be a mom. This was not possible for her but the feeling of having a child came through by taking the baby wherever she went. The doll was a representation of her lost hope. The doll made her feel typical. The doll made her feel safe. At what point should her safety and feeling of normalcy be trumped because of “age appropriateness”? It didn’t make her feel bad, only the people who judged her. She didn’t care what people thought about her or even notice their disapproving looks. Tyler doesn’t care what people, even his peers, think about him carrying his stuffed friends around. I have fought with my typical kids to have them not care so much about the opinions of their friends and with Tyler it comes naturally!! Why would I teach him the complete opposite of what I teach my other two sons?
If my older son Andrew wanted to get a face tattoo, I would discuss the difficulties society would have with his choice. We would talk about the possible fall out. But if he still wanted to do it, he would. He is 22 and can make his own choices. If at age 22 Tyler wants to still carry his Winnie the Pooh and Tigger out in public we would discuss the difficulties society would have with this choice. We would talk about the possible fall out. But if he still wanted to do it, he would. He would be 22 and will have the same right that Andrew had. No difference from where I stand. Thanks for letting me share my views. Time to grab my light saber and head to the post office! (Wish I actually wasn’t so concerned about what other people think and that I really would wear a light saber out in public!! Help me, Obi-Wan. You’re my only hope!)
May the force be with you!
Tim Geels – Senior Vice President of Organizational Development