How Far We've Come: Two Autism Diagnoses in Three Years - Emily's Puzzle -

How Far We’ve Come

Two Autism Diagnoses in Three Years

On April 19th we took our youngest son, Eli to the same doctor that had diagnosed his older brother with autism three years ago. This time it was Eli’s turn to be observed, asked a couple of questions and put through a series of play tasks before diagnosing him with a lifetime disability of autism spectrum disorder.

How Far We've Come: Two Autism Diagnoses in Three Years - Emily's Puzzle - www.emilyspuzzle.comEli’s three years old, a year older than his brother was when diagnosed.  Eli has fewer characteristics or what I like to call “isms” of autism. He only has minor communication problems such as stammering, some scripting and repetitive questioning. Otherwise, his communication skills meet or exceed the skill set for his age. However his repetitive interests/behaviors and social interactions do meet the specifications for autism spectrum disorder.  Hence the diagnosis.

As we were waiting for the doctor, I couldn’t help comparing us, the parents, the partners, the people that my husband and I are today to who we were sitting in the same blue chairs just three years ago. Talk about a crash course in life, love, marriage, expectations and compromises.

The quirky doctor comes in and interrupts my daydream. He seems very busy and very important in his white coat and no nonsense face. He makes it very clear to us, more with his actions than with his words, that we are here to seek information from him and not the other way around. I don’t like him. But aside from his arrogance he’s a good doctor and he knows autism. He’s to the point, a black and white thinker and doesn’t leave any room for interpretation.  Most importantly he doesn’t waste time diagnosing Owen or Eli which affords us valuable time to seek help.

After Owen was diagnosed, I went home and began calling the different agencies to set up his services and ran into a roadblock. Not knowing where to turn, I called the only person I knew that could help me.  I left a panicked message for the doctor. He called me back personally within the hour.  He walked me through the things I needed to say in order to get the services for my son. He didn’t need to do that but he did. So as much as this man rubs me the wrong way, I mustn’t forget that he was there for me, pointed me in the right direction and held my hand when I needed it the most.

But back to our doctor’s visit. I watch as he talks to a suddenly very shy, Eli, who keeps trying to hide his head behind his hands or in my husband’s shirt. I don’t blame him, the doctor’s an intense man. The doctor then turns his attention to us and starts asking the hard questions. I find myself answering them effortlessly. My husband and I are finishing each other’s sentences and adding in things the other left out. I feel proud of us. We’ve come a long way as a couple since our first visit with the doctor, where Jeff openly dismissed every concern of mine and I rolled my eyes and made passive aggressive comments to every one of his concerns.

I remember the doctor’s rapid fire questioning being intimidating back then.  Now, I find it efficient. I have the answers, all of Eli’s “isms” when they started, when they ended, what he’s like now, where he struggles and where he excels. I eat, breathe and live this life of special needs.

Once finished with his questions and exam the doctor tells us that he agrees with the University of Pittsburgh’s recommendation of an autism diagnosis. Then he launches into a 10 minute dissertation of all things autism. As he’s talking I flashback to three years earlier.  It was during this point in the conversation, three years ago, that I had started to cry. I felt like I was in a boxing ring, getting punched in the stomach every time he said the words, autism, special needs or disability. Back then it felt as though he was speaking a different language. I knew the information he was telling me was important but I couldn’t retain anything.

I come out of my reverie, back to the present and discover that he’s speaking my language now. Of course, I now have my own strong views and opinions about autism as well as some real-life experience raising two children on the spectrum.  As I’m listening to this man who I had once thought was the all mighty and powerful autism whisperer I realize that he’s just another “expert” in the autism world sharing his opinions on all things autism. I agree with a lot of what he says but there’s a lot I disagree with as well. I start to argue my beliefs with him but am quickly reminded that arguing autism politics is as futile as arguing politics. We each have a side, we each have our own beliefs, neither is wrong and neither is going to change the others mind.

How Far We've Come: Two Autism Diagnoses in Three Years - Emily's Puzzle - www.emilyspuzzle.comAt one point, Eli gets bored and lies down on the floor. He isn’t being loud or destructive, he’s just lying there.  The doctor points out to us that that is abnormal behavior for a child of his age.  Once again, I flashed back to when he had pointed out that Owen didn’t acknowledge his presence when he entered the room.  He just continued to play without ever looking up at this tall and looming figure standing over him.  Back then, I felt sick to my stomach. I grabbed Owen and tried to make him acknowledge the doctor. I worried how many other “abnormal” things he was doing and I wondered if others noticed it too. Today, I just smile to myself and make no effort to correct Eli’s behavior. I’m proud of my little guy for being so quiet and calm.  We told him that if he was quiet during the appointment that we would take him to the biggest toy store in the world (Toys r Us) afterwards so he could pick out a toy.  He’s following orders and I’m proud of him. This doctor no longer has the power to shake me.

Finally, the topic of homeschooling comes up and the doctor informs me that, “Although an admirable feat it’s just not practical to homeschool children with autism all the way through. They just need too many services.”  As he starts into what I’m only assuming is a lecture on homeschooling, I cut him off saying, “I feel very comfortable with how we are handling our homeschool and I’m not looking for any input there.” I don’t think he noticed or cared that I interrupted him but I felt this huge surge of confidence welling up inside of me and a sense of pride in myself for how far I’ve come. “Look at me being confident!” I want to shout out loud.  Fortunately, I keep it to myself but celebrate internally – yay, go me!

I don’t have all the answers and I am going to continue to need outside help from specialists and experts as my children grow but I no longer feel helpless without them. I may not be able to quote the latest statistics and research but I know what’s worked with my children and what hasn’t worked and I will no longer take a back seat in their care.

With the appointment ending, we’ve all made it out alive and somewhat diplomatically, the doctor hands us Eli’s official autism diagnosis.  This is something that I have been thinking and fretting about since he was four months old. Instead of feeling broken I feel relieved. The watching, waiting and wondering is over. Now we can do something about it. I watch as Eli literally marches out of the doctor’s office, saying goodbye to any of the office staff within ear shot. I feel proud of my son, not once seeing autism, only Eli. What a long way I’ve come.

Three years ago, on our way home from that devastating appointment when my first born son was diagnosed with autism, my husband told me in the car, “This doesn’t change anything.” I didn’t believe him then because it did, it changed everything. Three years later, after receiving our youngest son’s autism diagnosis,we are on our way to the biggest toy store in the world, my husband reaches over, grabs my hand and with a wink says, “This doesn’t change anything.” I squeeze his hand and smile back because this time I know in my heart that it doesn’t.

How Far We've Come: Two Autism Diagnoses in Three Years - Emily's Puzzle -

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