By Jan Randall
My son Andrew is now 31 and I have no idea how he got this old, so fast.
He was 20 months old when I first noticed his regression. At that time I was told not to worry he was completely normal. He was officially diagnosed just before his fourth birthday, after a yearlong search for answers as to what was wrong with him. So clearly, I’ve been doing this Autism thing for a long time. A LONG time…
Over that time there have been so very many things that I have learned from so very many people. I am grateful that all I have learned has made Andrew’s life so much better. So, I’d like to share some of these things I’ve learned with you in the hopes that maybe one of these things can make a difference for you or someone you love.
Visuals are vital!
Marty was the 2nd in a long line of Autism Specialists who came into our home to work with me and my husband Bob around Andrew’s issues of behavior, learning and language. Andrew had just turned eight when we met Marty. He and I would meet weekly and I would share with him different challenges we were having with Andrew. Marty would offer ideas and we would brainstorm ways to support him so he could function at his best. Not long after we first met,Marty suggested that we should be using visual supports for Andrew. I thanked him but said no, Andrew can say what he wants (“you want juice”, “go in pool”) and he knows our daily routine. Still, each time I would complain about a behavior, or problems with transition, or another issue we were having, Marty would say to me,“Andrew needs visual supports”. My response was always the same. No, he doesn’t need them.
Nearly a year later, during an unusually difficult period of time when Andrew was constantly jumping and screaming “NO NO NO” to any request we made, Marty once again suggested that Andrew needed visual supports. This time I admitted, that I didn’t really know what they were, or how to use them. I told him, “you will need to show me what to do”. A week later Marty and I created Andrew’s first Visual support, a daily schedule. I used it that very day when Andrew came home from school, and the results left me shocked. Instead of a screaming fit of “NO NO NO” when I asked to put his coat and backpack away, Andrew quickly ran to do it once he saw it on his schedule. This experience taught me the vital importance of visual supports. It was also a lesson for me on being stubborn. All these years later I think that I was probably most reluctant because I knew creating and using visuals for him would be just one more thing on my very long “to do” list of work related to Andrew’s needs. Little did I know how much the visual schedule would save me in time wasted dealing with difficult behavior and both Andrew’s and my level of frustration.
He still uses a visual schedule daily so he knows what is going on and so he can schedule what he wants to do during the week.
Chores are important for EVERYONE!
My Mom has been a huge influence in my life, especially when it came to raising my kids. One of the things she impressed on me when my kids were just toddlers was it is never too early to teach and have them do chores. I remember asking her, just after Andrew turned three, “What can I teach him to do when he can’t even talk, when he is constantly having meltdowns?” She told me,“have him empty the wastebaskets.” And so a chore for Andrew was born. I learned quickly that he really ENJOYED learning this new routine of getting the small wastebaskets from the bathroom and bedrooms, then emptying them into the kitchen wastebasket. I also learned that having a chore to do was good for his self-esteem. Over time I learned too that there wasn’t much that he couldn’t do to help around the house, and that teaching him those skills wasn’t all that hard. I also learned that he learns by doing and that backward chaining is one of the ways he learns best. Today as an adult he has a long list of chores and housework he takes care of around the house including hanging on the clothesline, folding laundry, stripping and making beds and taking care of all of the trash and recyclables. He loves helping around the house
Be careful of your mindset
Kevin, the first in a long line of what I call mentors, came into Andrew’s life when he was ten years old. They would cook together, play games, go sledding and do other things. One day when Kevin and Andrew came home I asked them where they had gone. Kevin told me that they had gone to a small Café over on Providence’s East Side. I was shocked! I couldn’t believe that he had taken Andrew, who was at that point loud and prone to meltdowns over minor things, to a café, where people quietly sip lattes and chat over scones. I asked him, “weren’t you worried about what Andrew might do?” Kevin told me that Andrew did really well. He was quiet sipping his cocoa and enjoying a cookie and really seemed to love going there. Although I had always said “the sky’s the limit” for Andrew, I learned from this experience that I had been unknowingly setting limits on what Andrew could do. Before that day I never would have taken Andrew in to any place where he needed to be quiet or where there was the possibility of him not doing well. Kevin opened my eyes to the fact that Andrew needed chances to experience all kinds of things, big and small.
It takes a village
Over the years I have learned that without all of the amazing people who have come into Andrew’s and our family’s life we would not be where we are today. Over a period of about 20 years I have worked closely with 5 different Autism Specialists from a wide variety of training and professional backgrounds. They brought vital knowledge and strategies that have provided us with ability to support Andrew to become the wonderful guy he is today.
Andrew has also had well over 30 mentors in the last 20 years. While a few of them have been duds, most have been wonderful, and some have become part of our family. From the best of them I have learned that it doesn’t matter if you are trained in Autism or if you are 18 ,25, or 40 years old if you are a “natural”. By ‘natural’ I mean, if the type of person who will treat Andrew the same way they would want to be treated; not as a client, a case, or someone who needs to be fixed, but rather as a respected friend who needs support. These are the people who have made a huge difference in Andrew’s life and in mine as well.
My friends, who are fellow Autism Moms are also part of that village. They have taught me that it does not matter where your kids are on the spectrum or if there is a 10, 15, or 20 year age difference between my kid and yours, because we all have so much to learn from each other’s experiences.
Life is too short to stress
It’s no secret that we Autism parents have a lot of stress. In fact I was part of a study in which researchers followed a group of moms of adolescents and adults with autism for eight days in a row. At the end of each day we were interviewed about our experiences. On four of the days researchers measured our hormone levels to assess our stress. The results were that “Autism Moms Have Stress Similar To Combat Soldiers”.
I’ve learned that it isn’t always the Autism that is the stress inducer, but rather the people who don’t get Andrew, the seemingly non-stop meetings, the paperwork and other assorted hoop jumping that comes with Autism. It can drive me crazy, if I let it. I have learned that it’s vital to find ways to keep the stress at bay or at the very least find ways to cope when things get overwhelming. For me, it’s making time to get out of the house and away from the day to day STUFF. A few years ago after a number of unexpected significant health issues I joined a small “guided meditation” group where the leader would talk us through relaxation, then guide us through an inner relaxing journey. I also bought some guided relaxation for my MP3 player to use at home. I’ve also found that simple things, for example taking some “me time” to go out for breakfast or dinner with a friend, getting a pedicure, or getting out for of the house with Bob for an hour or two can make a big difference in how I am feeling.
All of us have learned things on this Autism journey, but we don’t always take the time to think about all the knowledge we’ve gained. I hope that you will make space to think about all you have learned and the difference that it has made in your son or daughter’s life and in yours.