The first month was definitely the hardest. I couldn't even say the word Autism. I mean sure if I was speaking in generalities about the disorder then yes I was comfortable holding a conversation. However, when the moment came and I had to share with people that Gavin was on the spectrum...forget it....I lost it. Tears would well up in my eyes and I physically couldn't speak. To top it off most of the time I felt angry at myself for reacting this way. I mean I love my son!!! I didn't want anyone to think that I was crying out of disappointment, but more so I was hurting for him. My tears and emotions were for the difficulties that I knew would now lie ahead for him and for our family.As Doug and I started to learn more and more about his diagnosis the more comfortable both of us became talking about the subject . We realized we needed to be Gavin's advocates; it's the only way he has fighting chance in the system. We want his therapists to know that we are aware of what he needs and will continue to fight until everything is in place for him. We are so lucky that everyone working on his team is fantastic!
So back to the perception that I am holding it together..I'm really not. A wonderful colleague of mine gave me great advice when we first received the news. He reminded me that it is human and ok to cry. He made a fantastic suggestion to make sure that I schedule time to get really mad and upset into my day. To read that, it probably sounds ridiculous...scheduling time to cry...but it actually works! A couple times a week when everyone else is asleep in my house I allow myself to break down, finally let go of everything that I have been holding in. I watch a sad movie, I read an article about a child with Autism that is doing amazing things, or I just think about the new stresses in my life centered around Autism and I cry. It really is such a relief and I feel no shame.
I no longer go into the next day worried that I have so much built up emotion that I might break down at the drop of a hat or in this case at the word Autism. I'm sure there will be days that the stress of everything we are dealing with will become too much, but I really don't want to walk around being sad or pessimistic. I know that it is ok to feel frustrated by the cards that we were dealt to us, but the rest of my friends don't need to take on the stress. I want to be able to share with them what we are going through in a positive way or at least without having to sob through the entire story.
“if you tell yourself you feel fine, you will.”
― Jodi Picoult, My Sister's Keeper