Lucas’ story
I always hope that if my life had not changed so dramatically five years ago, I would not have been one of those people. I can say that I think I would have tried to be understanding, but I can clearly remember the time when I just didn’t get it.
I was six months pregnant with my son, Lucas, being sent by my job at the newspaper to cover a presentation about how emergency responders should approach special needs children, and how parents could help them be aware of their presence in any emergency situation. I spoke to a local firefighter on the phone to collect some information in advance and he told me it was because there were so many children with autism in his area that they decided to host the presentation in their town. His own son was diagnosed with autism, he shared.
Now that I have a special needs child of my own whom I have been fighting for since we could first see his challenges emerge, I can’t forget my response to the firefighter. He said, “my son has autism,” and I said, “I’m sorry.” I simply didn’t know the right response at that time of my life. Little did I know how well I would come to understand that parents of children with disabilities do not want sympathy for their children. Sympathy is one of the last things we want for them, right behind rejection.
My little boy came into this world just a few short months after I learned some of the first information I ever heard about how autism might affect a child. It’s different for every child who has it. For several months, I still didn’t know what was coming. My baby was a smiling, happy boy who made direct eye contact with people. But as we got nearer to our son’s first birthday, we noticed he was no longer meeting his milestones when they were expected. He never attempted words or responded when we said his name. His motor skills were delayed across the board.
I wanted not only to have the answers, but more so to know what to do to help him do his best. Isn’t that what every parent wants? For their children to just do their best? For them to find a place in the world doing something they enjoy? So this was my promise to my son, and myself, from this very early age when we were still trying to sort things out. I would never give up on moving him forward and no matter what it takes, he will rise to his full potential. When Lucas was 19 months old, a doctor diagnosed him with autism. Later we got genetic tests results back that indicated he has autism as a result of Fragile X Syndrome. This is a disorder in which the X chromosome is damaged and it can cause global developmental delays, as we have seen in our son, who is still non-verbal at 5 years of age.
Now, after taking the roller coaster ride that is parenting a special needs child for 5 years, here is what I want the world to know. These children and their parents don’t need sympathy and they certainly don’t need the disapproving stares and comments that come from people witnessing odd behavior they have never seen. What these kids and their families do need is acceptance, and some understanding that will come through education about autism and other disorders.
Ask questions. Read the articles that circulate on the Internet, and at the very least, don’t assume you know anything until you have taken the time to learn something. I can guarantee you that if autism has not already come into your life through someone you know, your child or relative is going to be in school with children who have it. The statistic now says that one in 88 children are diagnosed with autism. Teach them to be kind and try to treat them as they would other students. I will never lose hope for the future with all the progress my son has made, but his success is increased when we have other people involved wherever he goes, who try as hard as his parents to keep working through the challenges without giving up. This is what all these children really need to have their best chance; a little caring and patience.
In His infinite wisdom, God gave me a gift that was different from the one I was expecting. He knew that along with the stresses and worries I would have to conquer daily, there would also be great joy and a lot of excitement about things that most people take for granted. Because of Lucas, I have become a better, stronger, more patient and faithful person. I have seen this child grow and make huge strides over the years, becoming more capable each day of doing what he needs to live independently. I have been blessed to regularly witness miracles. So if there is any chance the nice firefighter I spoke to more than five years ago is reading this, I am sorry for being sorry. My son has enriched our lives beyond measure, and I’m sure the same is true of yours. I will spend my whole life advocating for kids like ours in any way that I can, now that I know what they really need.