Back to School: The Reality of Living with Autism
I will be the first one to admit I do like having a routine. Cole thrives on a daily and weekly schedule and it gives him comfort knowing what comes next. I, on the other hand, must have a written schedule to survive. I haven't written a blog post in awhile because I have been enjoying summer with Cole and my awesome husband! I am writing this blog today for two reasons: 1. I find it comforting to know there are good people out there to help Cole during summer and 2. I need to write to help me calm my mind.
We have mostly good days, but there are some days that are just awful. Yesterday was one of those awful days. Cole was tired, but we pushed on and went to the gym. I didn't see what happened because I was doing aerobics, but suddenly Cole's trainer opens the door and says he needs me. Cole had gotten upset because he spilled water on the treadmill and was in a rage. I felt awful for Cole and his trainer, but I was very thankful for the fast intervention of getting me. When Cole has meltdowns, they are terrible. I know if you are parent or a care giver to a person who has autism or other disability, then you can relate to this meltdown. However, yesterday was extremely scary because Cole wanted to run down the stairs without me. The stairs are very winding, open, and are 3 stories high. I was finally able to calm him down after 30 minutes, but I don't think I have ever been as scared yesterday as I have ever been. Cole is strong and when he is mad, he is extremely powerful with his strength. I was embarrassed at first by Cole's meltdown because there were so many people watching, but after a minute of trying to calm Cole, I no longer became aware of the stares. The unfortunate reality of Cole having autism is the worry I have each day that he will find someone to help him when I am gone (die). I am truly blessed by an amazing support system with my husband, parents, and friends that love us. I couldn't get through life without them.
Cole is fourteen years old, six feet tall, and weighs 265 pounds. We received a wake up call in March when he had his yearly physical. I knew in the back of my mind his doctor was going to be disturbed by his weight, but I thought it would be just one of those visits where I would say, "Oh, we are doing better! We moved, he exercises every day in P.E., and he eats healthy". I was wrong. I was terrified by what I was told next: Cole is a candidate for weight loss surgery and we have a wonderful pediatrician who is now certified. You see, I have always battled with my weight since I was a college student. I never had to worry as a child or teenager (but was obsessed with my weight to the point of becoming anorexic) about how much I weighed on the scale. However, the scary part of being a parent to child with autism that doesn't like to exercise is a part of daily life. I have seen with my own eyes loved ones suffer with their weight (too heavy or too skinny) and it truly scares me.
Cole's top weight rose to 282 pounds before we (me and my husband) got serious about losing the necessary weight naturally. We exercised, hired a personal trainer, walked, started eating better, and now Cole has lost nearly 20 pounds. However, due to family history Cole has high triglycerides, so more blood work is required in six months. I am baffled as to why his repeat blood work didn't change that much from March, but after much research and reviewing our food journal, Cole eats too much fruit. I was shocked when I read that fruit can cause high triglyceride levels. Cole eats blackberries, strawberries, 3 types of grapes, cherries, raspberries, an orange, banana, cantaloupe, watermelon, and baby tomatoes every day. I didn't realize too much of a good thing could have ill-effects on our health. I now realize I have to cut down his fruit consumption and add more protein.
The main reason I write this blog is to educate those who don't understand the complexities of autism. I am truly amazed by the progress Cole has made since kindergarten. I am incredibly blessed to have an amazing church that gives us so much for Cole and others who have disabilities. I am also no longer as scared about his future life because of our church, Highland Park United Methodist Church, and all they are doing for the special needs community. I still worry about the day when my parents are gone and I no longer have that mental and physical support from them. I am also, for the most part, at peace with my life because I know Cole is the most incredible son I could ever have. I thank God each and every day for giving me the insight to find an amazing man who loves me and Cole and supports us in any way he can. Living with autism is hard at times, but with my faith in God, I truly have the most incredible life.
