Although we may appear to be a typical family we are anything but. December 22, 2006 we heard the words your child has autism. Our lives were forever changed in that instant. A short two years later we learned our beautiful daughter would take the same journey. We were unsure of what the futures of our children would hold. We were scared but we had hope. That’s when we found Autism Speaks.
Aidan was non-verbal and a little boy trapped in his own body. Things like going to the grocery store or a restaurant are a constant struggle for Aidan due to his challenges. Countless times, my family has tried to navigate through the grocery store when my child begins to tantrum, grabbing things off the shelf. Typically, fellow shoppers look in disbelief, apparently believing I was “allowing” my child to behave that way. More times than I care to remember I left the store in tears because of someone’s insensitive comments. Everyday things that most people take for granted are extremely difficult and challenging for Aidan.
Thankfully, with countless hours of therapy and eventually school he has blossomed into a charming little guy who will now talk your ear off, loves play-dates and enjoys birthday parties. Despite the great strides he has made we still have a long road ahead of us. Everyday things like going to the store are still challenging however we have learned how to make the trip a little easier for Aidan. We now carry a sensory survival kit, which includes noise reduction headphones, sunglasses to help with florescent lighting and lollipops-which Aidan will receive upon a successful trip.
Alison was diagnosed when she was seven which is typical of girls of the autism spectrum. She is now ten and has developed into a sparkling young lady. She enjoys Girl Scouts and soon will begin training for the summer Special Olympic Games where she will compete in Gymnastics. She is evolving into quite the self advocate as well. Knowing that I was going to meet with a legislator she drew a picture of a blue puzzle piece and inside wrote “Vote for autism. Vote for me.” I suspect that picture spoke volumes more to that legislator that I ever could have. Now that Alison is ten, and all these little victories have been at the cost of hundreds of hours of self funded therapy, countless school meetings advocating for special education services and hundreds of dollars in co-pays, the road ahead will be long for her as well. She is beginning to recognize her differences. With that comes having to have conversations about why she may not be invited to birthday parties or why she may not be concerned about the latest fashions like her typically developing peers. Currently, Alison’s favorite song is “Who Says” by Selena Gomez. The first line is “I wouldn’t want to be anyone else, who are you to judge?” The irony is not lost on me.
My husband essentially works two full time jobs to make ends meet while I spend long hours in school meetings, doctor appointments, after school therapy and researching resources that may be available to our family. It is a constant struggle to make our family thrive. This is why families like ours need you to be heroes. You can help us by volunteering at Autism Speaks events, raising money for research and making the community more accessible to our families. Would you be our hero by becoming more involved and volunteering for Autism Speaks?