Author’s Note: Here is another re-post from my old blog. It was originally posted on April 24, 2012. Again, I feel it’s vital to our “back story.”
A few weeks ago, we went for Finn’s long awaited 2nd opinion at the Regional Autism Center at CHOP. Thank your lucky stars you’ve never needed to see a Developmental Pediatrician because the waiting list is about as long as Santa’s naughty list. The good thing about having to wait over 10 months for a doctor’s appointment is it gave me time to do my research. Originally, we wanted a 2nd opinion so we could prove the 1st diagnosis wrong. Now, we accept the diagnosis. We see it. We live it. Every. Day.
Time gave me the ability to really learn about Autism and what it means in our child. I went into this appointment with knowledge instead of incredulity, looking for help instead of a miracle.
The appointment went really well and I really liked the doctor. She gave Finn an intelligence test, which he did exceptionally well on. She said she couldn’t stop the test until he got 5 wrong, so it took her a while! I was proud to see our boy, who normally struggles with so much, do so well on something!
We broke for lunch and Finn and I went to a corner deli for lunch. I really enjoyed getting to be with Finn alone. While eating, I looked over at him and said “Isn’t this a nice date, Finn?” He said, “This isn’t a date, Mommy, it’s a doctor’s appointment.” He’s a stickler for the rules.
When we returned, the “Attending” doctor came in to talk to us. She spoke to Finn for a few minutes, then turned to me and said, “You believe the diagnosis, right?” I said, “Yea, I do.” She said, “Because I see it and I’ve been talking to him for 5 minutes.” She continued to say that his official diagnosis would be changed from PDD-NOS to High Functioning Autism. It means nothing to the man on the street and it shouldn’t mean anything to us, either. It’s just a label. The diagnosis is what rocked us, but we accept it now. We own it. We have to. It’s our boy. Autism is our boy. And we love him, so how could we not love it, too?
When we got home, I said to Finn, “Did you hear anything Mommy was saying to the doctor?” He said, “Yea, you said ‘Otts’ a lot.” (Which is funny because in Temple Grandin’s book, she said that people with Autism usually only hear the beginning or end of a word, that’s why it’s important to speak slowly) I said, “You mean Autism?” He said, “Yea. What is that?” I said, “It’s just a different way of thinking.” He said, “Oh.” Not exactly a groundbreaking talk, but we were dipping our toes in the water.
So, in honor of Autism (Acceptance) month, I got everyone in our family an “I love someone with Autism” button. Charlie and I wore it to school for an Autism presentation I did for his class. When we got home, Finn wanted to wear the button and asked, “What does that say?” Charlie told him, then Finn said, “Who has Ottsism?” Charlie came running into me because he didn’t know how to answer him. I wasn’t prepared to do a “big reveal” to Finn at that particular moment, but I didn’t want to lie to him, so I held my breath and said, “You do, Finn.” He said, “So, I love myself?”
Since then, Charlie has really been laying it on thick. He says, “Finn, you know what makes you awesome? Autism!” I guess I can’t blame him. We’ve been whispering about it for so long. He’s just happy to be out in the open about it!
After I did the presentation in Charlie’s class, he went to his old kindergarten teacher’s class and did the presentation with them. He read a book about accepting kids with Autism and talked about being a good friend. His old teacher said the kids were telling stories about kids who aren’t nice to them. Charlie told them “there’s a difference between Autism and kids who aren’t nice to other kids!” He is wise beyond his years! But we already knew that!
I went into the boys’ school to participate in the “Blow Bubbles for Autism” event today. I didn’t think Finn would come out because the whole school was out there, but Mrs. H said she was going to try. To my surprise, out walked Finny! I was so proud of him! He was in good spirits until Charlie’s friends started calling me a cheater for using a bubble machine (instead of blowing the bubbles the old fashioned way!) Finn yelled “Don’t say that to my Mommy!” Loyal as a pitbull, that boy! Then the bubble blowing started and Finn got upset because someone “blew bubbles on him.” Eh, you win some you lose some! I was just glad he came out!
I later told him that all those kids came out to blow bubbles for him! He liked that. Believe it or not, he’s come a long, long way in a very short time. He has really started to control his anger and use his words. I sometimes forget that he’s still only 4 years old. I’m pretty sure I, myself, was still having temper tantrums at 4!
In this month of Autism Awareness (and Acceptance), we feel at peace with where we are in life. We have a son with Autism. We accept him for who he is. He may not behave perfectly. He may offend the old lady at the supermarket. But what’s on the outside is only half his story. He has a heart of gold, a smile that could light New York City and the greatest laugh you’ve ever heard! We wouldn’t change a thing!