In Their Own Words – That Day
This ‘In Their Own Words’ post is by Tracy Miranda.
I will never forget that day – December 7, 2010. After months of speculation, questions and wonder, it was official. My son was being placed on the Autism Spectrum. There were tears of course; immediately. Not that I have ever experienced it myself, but it reminded me of when people talk about a near-death experience. In an instant, my son’s whole life passed through my head and there were so many unanswered questions. Will he be okay? Will he be bullied? Will he get married? Will people think he’s stupid? I don’t know. I won’t know until he gets there. I allowed myself to cry for a couple of days and that was it. Tears weren’t going to change anything. I wasn’t crying because of the diagnosis. I was crying because as a mother you want to do everything to ensure that life will be great for your child, and I just couldn’t guarantee that. I couldn’t fix it.
My next priority was to learn. Boy was that a bit overwhelming. Like others, I was “aware” of autism, but didn’t totally understand it. In his evaluation, the psychologist report had mentioned that he had the potential to be extremely smart, but may be socially awkward. We are huge fans of “The Big Bang Theory” and after reading that my first thought was “oh my gosh we’re raising Sheldon!”
It was nice to be able to laugh at the situation, but research was obviously necessary. After doing an internet search for autism, I felt lost. There were so many websites, books, and blogs I didn’t know where to start. Who was I supposed to believe when the websites contradict each other? I remembered that teachers at my son’s school had done the Autism Speaks Walk that we had donated to, so that’s where I started. I came across a blog submission that brought me to tears. It was a letter entitled “Dear Future,” by Stuart Duncan. It was amazing; exactly what I was feeling. I didn’t know what the future would hold, but I wanted to be in it for my son.
I went to his website and immediately emailed him. I had to tell him how much that letter affected me and what I was going through. I needed someone to hear me that could relate to my situation. It was only the first week and I already found a friend. He answered my questions, put my mind at ease and introduced me to the amazing community of autism parents on Twitter. Just like a lot of people, I thought that Twitter was for useless facts about your favorite celebrities. I could not have been more wrong. I found parents just like me who were there to support each other and stick together. When you think that nobody else is going to understand you, someone will. Every time I sent a tweet with a question, I got answers from people who had been there. If I sent an update on something cool that my son did, I received cheers from people who had lived it. They got me. They were me.
My husband and I were taking the news a little different. He kept a lot of his feelings inside to process them while I wanted to share with everyone and start building my support network immediately. Mind you, some of them weren’t sure what to say, but I’m not sure I knew what I needed to hear either. I did get a lot of people telling me that they knew “so and so” who had a child/grandchild/cousin etc who had autism and they were doing great, so I shouldn’t worry at all. Um, no offense, but that’s just not true. One of the biggest misconceptions about autism is remembering that it is a spectrum and everyone is different. Right now we have no idea what the future will bring. At that time, I was still trying to process that it was my son; I didn’t care who else was dealing with it. I’m not that insensitive now, mind you, but in the beginning all that mattered was him.
After a couple of weeks when things were starting to get settled it was time for Christmas. I was learning a lot about what to do and what to expect for my son. However, I wanted to know how I could help others. It was shortly after Christmas when I found the answer. My son had received more presents than he actually needed and his birthday was only a few weeks away. Already family and friends were asking “what does he need?” Ummm, nothing. Am I a bad mother for saying that? Am I going to deprive him of presents from loved ones? No, but I wanted to do something better.
We decided to make his birthday have purpose, help others, and allow those that cared about him to do something meaningful. Give a gift that helps lots of kids. Bottom line, my son didn’t need any more “stuff.” I went back to the Autism Speaks website and found the Puzzle Builder fundraiser. I thought it would be perfect! I uploaded pictures of my son and we were ready to go. When I sent out the invitations for his birthday party, I sent a letter to everyone explaining what we were doing and why we were doing it. I got some very positive feedback about our choice. Of course I had to brag about how great our family and friends are and what we did, so I went back to my support system on Twitter.
Imagine my surprise when Autism Speaks answered me back and asked if I wanted to share my story. What??? Me??? Absolutely! So here I am. Our amazing family and friends raised approximately $800 with his puzzles!! That is a LOT of money for my little man’s birthday. That was far beyond what I would have expected and fills my heart with joy and pride. We made a difference. My son still had a fun party and of course still got some gifts.
I know that the road ahead is still a journey of unanswered questions. However, my son is making great progress. He is very high functioning and doing great in school. I know how lucky I am that he loves affection because many parents of children with autism don’t get to experience that. My heart breaks for them. No matter what lies ahead, my son is the biggest blessing in my life and he makes me laugh everyday. When people want to feel sorry for me, I remind them how blessed we are. Things could certainly be a lot worse. Autism is what my son has, not who he is.
We will be just fine.
To check out Tracy’s puzzle click here!
“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to firstname.lastname@example.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.