Tuesdays child is full of grace,
Wednesdays child is full of woe,
Thursdays child has far to go,
Fridays child is loving and giving,
Saturdays child works hard for his living,
And the child that is born on the Sabbath day
Is bonny and blithe, and good and gay
I looked up his birth date. Sam was born on a Thursday. But looking at him now, I see nothing but Sunday!
Another autism awareness month thank you.
I have been interviewed many times by students in various educational and medical fields about being a parent of a child with autism. For some reason, professors always make them ask a really stupid question about diagnosis. It's usually something like "What changed after Sam was diagnosed with autism?" After I roll my eyes, I say something like, "On Monday, Sam wasn't talking. He was throwing tantrums, tearing my house apart, and making it difficult to go anywhere. On Tuesday we got the official diagnosis. Wednesday, Sam wasn't talking. He was throwing tantrums, tearing my house apart, and making it difficult to go anywhere." I say this because I want people to understand the label didn't change Sam the way a car accident or diagnosis of brain tumor changes things. It isn't a normal life Monday, and an autism life Wednesday. It's simply a confirmation that things ain't easy and that's not changing any time soon. But changes do happen. I know autism changed me.
The change was not immediate. Somebody called me Superwoman once because of Sam. There have been days I felt like I needed super powers to raise a child with autism. But the transformation from parent of a neurotypical child to parent of a child with autism isn't like being bitten by an atomic spider. One day you are a normal human, the next you turn into a green monster that can rip off people's heads if they mistreat your child. It is more like reincarnation. You were something. You die. You come back to life. If you are lucky, you come back better (Oh, How I wish I could add Kelly Clarkson's Stronger here as background music. I know! Run get your iPod and play it while you read. I'll wait. Ready? Yippee skippy!)
Just as babies need to develop the skills they need to navigate the world, the parent of the "newly diagnosed" needs to develop the skills he or she will need to navigate the world of autism. Which brings me to Rena.
I told you about the fabulous Melissa a few days ago. You have also read about amazing Dr. Kim K-G. Before the two of them, there was Rena. She was my, and Sam's, first exposure to DTT (discrete trial training) and ABA (Applied Behavior Analysis.) When Sam was in kindergarten, I knew he had major potential. I also knew that I was the only one who believed that. I argued with Sam's school because I felt that they were not doing enough. Over the summer I drove to the other side of the city several days a week so Sam could receive intense services. The first time he went, he pitched a MAJOR fit. Like the kind that required three adults to intercede. The irony of autism is that "low muscle tone" does not necessarily equal weakness. Rena was monitoring the session and ran to help. My first lesson, "there is someone besides me who is capable of managing Sam."
My next lesson? I learned that I was right and Sam was capable of making progress at a faster rate than what his teachers said. I learned how to better respond to Sam eloping. Eloping is a fancy schmancy autism word that means anything from running away to dropping on the floor. Oh, yeah, I learned fancy schmancy autism words like "elopement."
But the very best thing I learned in the entire world that was the deal breaker for Sam? I learned about data driven decisions. I know. You wanted something moving that would make you cry. Sorry. But that is what she taught me.
It happened at one of the last sessions of the summer. I brought the school's proposed IEP. It had turned "unpleasant" by that time and I wasn't sure if I should accept what they proposed or not. I didn't understand the IEP process or know how to decide what Sam could do. I asked Rena to look over it for me. Instead, she went over it with me. She explained the importance of getting a good baseline. She explained objective measures. Now I know that she was modeling and scaffolding so that in round two, I would know if the IEP goals were right for Sam or not. It was confidence building. Like the first time a toddler lets go of the couch to cross the room. For the first time, I felt like I could do it. I could raise this boy I loved dearly who just happened to have autism. So maybe that was the day the change took place. I guess that makes Rena atomic.
She stuck it out with us until the end of first grade. Rena attended meetings and guided staff. That was important because they were not too sure about me by that time. I mean it took all the way until the Avengers movie before we knew the Hulk really had a good heart, right? When all was said and done, I understood my child and how to help him. And that, my friends, is reincarnation into a higher level being.
Thank you Rena for being atomic so that I could transform into the parent Sam needed me to be. Without you, I don't know that I could have helped get Sam from Thursday to Sunday.
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