By: Bill Sieja
I recently read a very truthful, well-written article by a mother talking about autism. I read the article and thought, HOW TRUE. When I read some of the comments from people who also read the article, I became very discouraged. There were many comments, both negative and positive, directed at the writer and autism in general. Oddly enough, the positive comments were truly sincere, but the negative comments seemed to be attacking both the writer and autism itself. Those that were negative actually seemed angry about autism and terribly unhappy about living with someone with autism or having someone close with autism.
The best advice I have for these people is to find help, pray and find something that makes you happy. There is no known cure for autism, but knowledge and discussion can be very helpful. Talk to other people who may be dealing with any disability. Learn from those who may have experience working with disabilities or talk with a professional. Look for positive things. Little growths can be huge rewards but learning to deal with the everyday things is a must.
I also am the parent of a child with autism, and I am aware that autism, like most permanent medical conditions, is life changing. Hearing the words “your son has autism” was very confusing at first. When we received our diagnosis, we did not know where to turn, what to do, or what to think, but my wife and I researched all that we could. It was the beginning of a never-ending learning experience.
There is a lot of information out there for adults and children with autism. A person could literally go crazy reading all the articles, books and stories about families with individuals with autism. There are very heartwarming stories, and there are horror stories that scare you like you’ve never been scared before. The most important thing to remember is that each individual and situation is unique.
Yes, there are similarities, but there are so many differences. As I see and read more and more about individuals with autism, the most common denominator is that THEY ARE ALL DIFFERENT. They are definitely unique in everything they do or say, and they all have something about them that separates them from others. Something always stands out, and if you pay close attention, there is usually a hidden strength like being able to remember things easier, or being exceptionally good with numbers or technical equipment, like computers, iPads or video games. The most common weaknesses include social skills, motor skills and eye contact, and in some cases, they may even be non-verbal.
My wife and I have had many challenges. Close friends, teachers and resources such as WEAP (Wisconsin Early Autism Program) have offered relief. Some of the hardest challenges arose when we needed medical guidance. To find an eye doctor, a dentist or even just a family doctor was not easy. Some that were available just did not have the right bedside manner.
Guidance is also sought for things that may seem simple but are not to an individual with autism. Think about a simple haircut! Some children with autism literally feel every single hair being cut and can also hear it being cut. It was a sensory thing for our son, and he has worked through this, but it is still uncomfortable for him.
As a child with autism becomes a young adult, they get bigger and stronger, and in some cases, too strong for their parents or caregivers. They may hit, kick or even throw things to try and express their anger or dissatisfaction. This becomes even more difficult for the people caring for them. There even comes a time when they have to decide if they will be able to handle any more and consider relocating the child to a place where they can get professional help. These are the things that we don’t hear a lot about, but for some parents and caregivers it becomes the most difficult time in their life. I hope and pray that we will always have the strength and faith to take care of our son.
Our son had febrile seizures as a baby; we were told he would outgrow them. He did, and then he started having grand mal seizures. Any seizure is hard to watch, but watching a grand mal seizure is a terrible thing, especially when there really isn’t anything you can do for them. He has been tested several times for issues involving the seizures, and we have been given medication to prevent seizures and medicine to stop seizures. He has also outgrown the grand mal seizures (at least we are hoping), but now has been having what is best described as drop down seizures. You never know when they will happen or where. As parents, we do everything possible to stay close to him. We document changes in behavior, health, sleep patterns and even bathroom events. I say events as some may or may not know that bowel movements too can be a very difficult process and children with autism do struggle both with diet and bathroom issues.
Every day is a different day, and when I say different, I just mean that you really never know what will happen. We have been very lucky. For the most part, our son is very happy, and when he isn’t, we know that there may be something wrong. We have been blessed with our son and even with his disability; it has made us more aware of what other families with disabilities may go through. It has taught us not to judge without knowing the facts.
Through all this I will also say that there are several resources out there, it just takes time and effort to find them. I will also say that we will always be grateful to all our son’s teachers and anyone who plays a part in his life.
Life is not easy and parenting is certainly not easy. When you see a person acting out of the norm, know that you may never know what truly is going on in their lives. Please don’t judge them. If you are bothered or concerned and able to speak up, just ask. Is something wrong? Do you need something? I have found that those that really and truthfully want to know will ask, and I am very grateful for that.
Each April 2, Autism Speaks celebrates Light It Up Blue, along with the international autism community, in commemoration of the United Nations-sanctioned World Autism Awareness Day. Light It Up Blue is a unique global initiative that kicks off Autism Awareness Month and helps raise awareness about autism. In honor of this historic day, many iconic landmarks, hotels, sporting venues, concert halls, museums, bridges and retail stores are among the thousands of buildings lit blue to raise autism awareness. Visit www.autismspeaks.org/LIUB for more information.