I was on YouTube the other day during one of my many research missions, and I came across a video. The lighting was poor, and the camera angles were even worse. It made me a little nervous at first since you never really know what will pop up during a search, but the caption insisted it was an “interview with autism parent,” so I kept watching. On camera was this person, who I can only assume was a reporter, and he was interviewing a distraught mother with a little boy newly diagnosed with autism. He asked if she still had “hope” that her child might not have autism since he was still so young. “You know,” he said, “maybe it’s possible the diagnosis was wrong. You can’t lose hope.”
I don’t remember what that poor young mother said because for a split second, I was paralyzed.
Hope? What hope? The hope that I’m wrong?
I don’t have that hope anymore;
The hope that Noah does not have autism.
But should I?
I remember when one of Noah’s doctors told us, “This isn’t something children grow out of.” I knew then, and accepted, that he had autism and life would probably not be “normal.” (For some reason, that word really bothers me.) At that point, I stopped looking for other answers. Maybe I shouldn’t have stopped looking. Maybe I only heard the answer I wanted to hear (the one that told me I was right), and that was it for me. I accepted his diagnosis, just as I accepted the beautiful birthmark on the side of his ribs.
Am I supposed to have hope for a day when Noah will walk through the door and not have autism? Hope that he can walk in and talk to me about his day and all the new friends he made so easily at school or how he made the football team or how he tried out for the school play? Maybe I should even hope that he will get his heart broken by some beautiful little girl because, as much as that would hurt, it would mean he was “normal.”
“Am I supposed to have hope for a day when Noah will walk through the door and not have autism?”
Before I watched that interview, I might have said things like:
“I know Noah has autism.”
“Sara knows he has autism.”
“We all know.”
We were certain about this autism thing. And we didn’t think that was a bad thing.
But while I watched this video, the question about hope, for some reason, made me stumble in my supposedly unwavering certainty of what I knew. I realized that hope and certainty are very different, and each one brings their own comfort, but too much of either is unstable. And I was off-balance. Maybe I had too much certainty and not enough hope. But this was the same certainty that freed, if not urged me, to preach about autism and enlighten everyone around me a couple of weeks ago in that little store and now it shifted beneath me. And, once again, I’m faced with all these doubts and misgivings about everything I’ve done or thought in the past. I am second guessing every decision I’ve ever made. Does Noah really have autism?
On top of that, I fear I’ve lost hope. Isn’t being hopeful a good thing? Shouldn’t I have some of that? I mean, it’s not like I don’t have all kinds of hopes for Noah; of course I do. But now I’m asking myself if they are the right hopes. Is there even such a thing as right or wrong when you’re talking about hopes or dreams? Maybe my hopes are just misplaced, or even worse, naïve. But, what am I supposed to be hoping for? Normalcy? Whatever that is? Or maybe, since I’m so convinced it is autism, I should be hoping for a cure. Or a different diagnosis.
And then I start thinking:
Why is all this getting to me so much?
I hate when I start doing this to myself.
“It’s not like I don’t have all kinds of hopes for Noah; of course I do. But now I’m asking myself if they are the right hopes.”
I needed to clear my head of the fog that had taken over my once clear mind. I felt like I had most of the answers I needed just a week ago but, with one question on a bad YouTube video, I questioned everything and knew nothing. Where was the certainty, the confidence, the fire I displayed at that little store? Was that now being replaced with doubt, disguised as hope? I needed some of that fire back, but it felt like it burned down to just a few smoldering embers, and I was desperately trying to ignite it.
I needed someone to help me fan the flames a little. To stoke my confidence. I had to turn those embers into the raging fire I once had. I needed someone that knew Noah as well as I did. Someone who is familiar with autism. I went to the most logical person I could think of. Someone, the only one, who could possibly love Noah more than I do. His mommy. Her’s and my husband’s are the only opinions about Noah that really matter to me anyway. She spends more time with him than anybody, so I started off by asking her if she ever thought Noah was misdiagnosed. If she ever thought maybe the original diagnosis was wrong and there might be other things we should be looking into. She turned to me with a look in her eyes that told me she had not only thought about this exact same question before, but that she was confident with her answer, and she simply said:
“No. I know.”
Just hearing her say it lifted all the doubt I had.
Just like I knew.
He has autism
Okay, so that was one question down. She didn’t doubt the diagnosis.
But another question still lingered. Did she still have hope?
But hope for what?! Normalcy, again? A cure?
Before I could figure out how to ask her (and what I was actually asking) without using the words “lost” and “hope” in the same sentence, she anticipated my question and said that she had stopped hoping that Noah would one day be “normal” too.
She also questioned what “normal” really means, though, and wondered if that’s what we really wanted, anyway. (That’s my girl.)
And then, in true Sara fashion, she told me what she does hope for. (She’s always been the glass-is-half-full kind of person.)
She hopes he makes meaningful connections with good and honest people.
She hopes he can bring out the good in the people around him and that they enjoy being with him.
“Happiness. It is such a simple thing to hope for. And it’s the same hope shared by all mothers.”
She hopes the light that shines in him so brightly for us will shine just as brightly for everyone else.
And she hopes he can find his place in this big, cruel, overwhelming, beautiful, intense world.
But, perhaps most importantly, she just hopes Noah is happy.
Happiness. It is such a simple thing to hope for. And it’s the same hope shared by all mothers.
It touched me deeply to see the determination in her eyes to make “happiness” happen for her son.
And I know she will.
I guess the lesson learned here (because we always need to find the lesson, right?) is that my family hasn’t given up hope at all.
Our hopes are based on the reality that Noah has autism. Some of them may be just a little different but, fundamentally, they are the same as every mother and grandmother in the entire world.
Sure, we hope he has girlfriends and joins some club in high school and then, someday, we hope he finds a job. But mostly, we hope he finds:
We know our obstacles will be different from other people’s. But we’re prepared for that. We will support each other. We will be there for each other. I have faith in my family, and I have faith in God.
For us, normal will look different, too. It will be filled with irregular things like “stimming” and therapies and IEPs and medical evaluations. And possibly a naked little boy running around the house. With his eyes closed.
But we’re OK with that.
Normal is over-rated anyway. It’s boring. To tell you the truth, during this process, we figured out that we probably weren’t very normal to begin with. If you look closely enough, nobody is.
“For us, normal will look different, too. It will be filled with irregular things like “stimming” and therapies and IEPs and medical evaluations.”
The bottom line is this:
All the questions and all the second guessing that I put myself through is pointless.
At the end of the day, all I can do is my best.
And trust myself. I have to trust my gut and stop allowing other people’s opinions to influence what I believe to be true.
How many times do I have to remind myself of that?!
“Normal is over-rated anyway. It’s boring. To tell you the truth, during this process, we figured out that we probably weren’t very normal to begin with.”
If, in the end, I was wrong, well, I’ll deal with that guilt when it happens. As long as I know I am doing my best right now, right this minute, that’s all I can do.
In the meantime,
Noah is happy,
Sara is happy,
The rest of my family is happy,
We are all living our kind of normal.
And that’s everything I’ve ever hoped for.