Coming to grips with your child having a diagnosis is a process. The biggest hurdle for me was understanding that he did not have the “big, red, shiny, bow.” I use this example many times when talking with teachers, parents, friends, and family members. I am the first to admit my child is the most amazing and exceptional child however it was a process for me to get to this point. I have always been proud of Dominic and thought the world of him. There was never a time that I regretted anything with him however I did have to come to terms with the differences our lives would hold having a child with special needs.
The first hurdle for me was getting answers and to acknowledge something wasn’t right. One of the most hurtful comments that came to me frequently was when someone would say to me, “I always knew something was wrong with him. I just never said anything.” This hurt because of course we knew he wasn’t like other children as early as seven days old we knew but to hear someone say this just broke my heart. It made me feel like I wasn’t doing everything as a mother to find out what was wrong when in reality Ed and I were very private about what we were going through with Dominic. We were not ashamed, we were not ready to admit he wasn’t perfect, he did not have the big, red, shiny bow.
The next obstacle was for us to find out exactly what was wrong with him. He had so many health concerns from GI, genetics, pulmonary, cardiology, orthopedic, and more. We went to every specialist we could find and it didn’t matter where we had to travel to see them. This was difficult because Ed and I both had new jobs and didn’t have many days to take off work. We had to rely on my mom to take Dominic to many of his appointments. When we did have to stay overnight at the hospital, she would stay with me so Ed could be home with Vincent. We were in the hospital at least once a week for an appointment, test, or therapy and it defiantly took a toll on all of us.
Through the process of the testing, we finally received a diagnosis. There were so many emotions when walking out of the office but some of it was relief. Autism is something we could handle, it wasn’t something we planned for however it was an answer. It was a start and a beginning to making a plan. Even with this information, I still wasn’t ready to admit that my son didn’t have the big, red, shiny bow. It took me an entire year to say a complete sentence with Dominic’s name and the word autism in the same sentence. I could refer to it but never verbalized it completely. I couldn’t bring myself to use the words. His big, red, shiny bow was still intact, if I didn’t say it.
I finally started being able to say “my son has autism” after about a year. It came to the point that I over said it because I needed to get used to the feeling. It was strange how I went from one extreme to the next. I would even wear a bracelet everyday that had a puzzle piece somewhere on it. It was my acknowledgment but most of all it was my acceptance that even if my son doesn’t have the big, red, shiny bow, he is amazing!
I use this phrase frequently about not having the big, red, shiny bow because it is easier than saying my child has a problem, he is different, he can be a handful, he will not be the same as Vincent. It is also a visual for people to have when you explain that many starting in the process may not be ready to admit this just yet either. I explain this to them so they will be understanding and have patience for the family going through it. This was something I had to come to terms with and so do many other families. It does not happen overnight but when I finally realized that the big, red, shiny bow wasn’t the end of the world, I realized the package I had was the most priceless gift ever.
