Beyond the Perfect Grade
Last week, I stood behind you in line at Pier One. I was buying throw pillows.
I overheard you chatting with the cashier about baseball and kids and school and whatever. I wasn’t really paying attention, but then I heard you say, “I told my kids, they better get all A’s or they can’t play.”
You sounded agitated.
You walked away kind of fast, otherwise I would have stopped and talked to you. I would have given you a piece of my mind. Yes siree! I would have!
I would have said, is this what our culture is coming to? Kids are only valued by the grades on their report card? Ridiculous!
I mean, why don’t you relax a little?
I would have said all of that, and more.
At least, I think I would have.
Maybe not.
Probably not.
No. I wouldn’t have.
My name is Carrie. I have five kids, and my second son has autism. His name is Jack. He is fourteen.
They say having a child with autism changes you—it helps you see rainbows and unicorns in the midst of storm clouds and tired old plow horses.
I don’t know about the unicorn thing, but autism has changed me.
I don’t care about grades anymore.
I don’t care about baseball, or championships, or innings on a field.
I mean, of course a couple of our kids play sports and that’s all fine and good. I go to their games and I chat with the other moms while I keep half an eye on the score.
And obviously I look at their report cards and I ask about homework and projects and stuff, but for the most part, I feel like school is their job and not mine.
Also, I may be kind of a lazy mom.
See, Jack is never going to get straight A’s. He will probably never get one single A. In fact, he’s at a special school with a special curriculum and they don’t even have grades. They have something called an Individualized Education Plan. It’s referred to as an IEP for short.
In his current plan they are working on conversation skills. In other words, they are teaching him how to have a conversation.
Do I sound bitter? I hope not. I spend a fair amount of my life trying not to be bitter, or resentful, or jealous.
But I can’t lie. Standing there with my arms full of pillows, I was a teensy bit envious of your confidence—of the ease with which you assumed, of course! Your kids should be able to get perfect grades on their next report card.
I will never have that ease. And that’s okay. I mean, it’s starting to be okay.
Listen, you have every right to raise your kids however works for you. I want you to know that.
But years ago, my husband Joe and I had to make a choice. We had to choose between judging this complicated boy by the regular standards—grades and fly balls and trophies—or by the person he is.
Lately he’s been singing “It’s Friday, FRIDAY,” to some nameless tune over and over again. He does this when it’s not even Friday. He sings it when it’s only Monday.
He is never going to get straight A’s.
And if he ever wanted to step even one toe on a baseball field, I would be thrilled. I would throw a party. I would dance on the sidelines and scream his name when he was up at bat and casually comment to all the other moms how he just loves the game, he can’t get enough of it.
But that’s never going to happen.
I mean, never say never! This is what we autism parents are supposed to chant. Never say never. It means we will never, ever give up on the diagnosed children in front of us, the ones who are lining up Thomas the Tank engines and reciting lines from old Elmo episodes and working on conversation skills instead of algebra in school.
Jack recites. At fourteen, he still recites.
He’s never going to get straight A’s.
I love him anyway.
I will never give up on him.
But the goals themselves, well, they’ve changed.
They’re starting to change.
I thought I was strong when we first found out he had autism.
I thought I was strong the time he shattered an entire jar of spaghetti sauce in the grocery store when he was three and I didn’t lose my mind. I just calmly picked him up and put him back in the cart and looked around for someone with a mop.
I thought I was strong when we needed to start medication for his anxiety, and when we had to move him out of public school.
Now, I have to be stronger than ever. And I don’t know if I have it in me. This is the truth.
You see, whenever he talks about driving a Toyota Sequoia like his dad, or how he wants to live in a big house in San Francisco, or whether or not he should name his son Anthony after his grandfather, I have to start helping him adjust his own goals a little.
It is perhaps the hardest thing I have ever done—harder than absorbing the spectrum diagnosis, harder than picking shards of glass from the bottom of my sneaker, harder than calling the pharmacy for our very first prescription of pills.
I have to tell him, somehow, that he is not going to be who he thought he would be.
I guess you could say it’s a little like letting the air out of a balloon. Once everything is deflated, and empty, and hollow, that’s when the real work begins. That’s when I have to show him how to take a deep breath, and fill the balloon back up with new brand-new hope.
Public transportation over a Sequoia.
Community living instead of a house in San Francisco.
Nieces and nephews replacing a child of his own.
Around and around I go, tossing different scenarios into thin air, and hoping one sticks.
And the entire time, I have to coat it all in a thin veneer of never-give-upness.
I mean, who knows, right? Maybe one day his brain will magically rewire itself and he’ll understand social cues and he’ll get a job that actually qualifies him for a mortgage and he won’t cover his ears and scream bloody murder at the sound of the fire alarm.
And maybe not.
But, maybe.
And this, dear Pier One customer, is precisely why I cannot give you a piece of my mind. As you can see, I need to keep all the pieces I can. It’s a precarious situation, this brain of mine.
I am afraid I might not be strong enough for this.
I love him.
I don’t care anymore
Maybe I care a little.
I am trying.
It’s going to be okay.
Let them play baseball. Sometimes, it’s not about the grades.
May 21, 2018 @ 8:01 am
You are just an amazing woman and I look up to you! At least , I try..
May 21, 2018 @ 10:05 am
I feel that it is important to remember that presuming competence is key. I found that presuming competence is not about false hopes or rainbows and unicorns, but rather about trying to get closer to the goals an individual desires. If it is not their dream to achieve something, they will not be motivated enough to even try.
Please, please do not deflate his dreams.
I have seen personally that “letting the air out of a balloon” and deflating dreams can crush a person’s spirit. It’s also simply “self-fulfilling prophecy.”
We do not have the ability to tell a person who they are going to be, especially since dreams change naturally as a person matures. I think we all have had different dreams at age 4 compared to 10 or 16 or 25. Dreams evolve as we grow and learn.
There is a difference between dreams and hopes. With hoping, one waits passively, while dreams can fuel the passion and motivation that one needs to get to where they need to be (or at least close enough). Living with roommates in San Francisco or another living arrangement may seem great after years of preparation. I would not preemptively crush that dream for him. We all need something to look forward to and to be excited in order to be able to experience the joy of living.
It is also important to remember that just like neurotypical individuals, individuals on the spectrum at 14 will not be at the same developmental level as a person who is 24 or 30; just like a person who is 14 has gained so many more skills than they had at age 4. Yes, an autistic brain is not “magically going to rewire itself,” but the brain will mature and is capable of learning; just on a different timeline.
A friend of ours grew up in another country. He is neurotypical, but enjoyed living with his folks till he was 35. Sounds like he had undiagnosed issues? He really did not. And his family enjoyed having him around till he was ready to be on his own. It seemed a bit longer than average to the extended family even by the standards of that country, but everybody accepted him and presumed that when he was ready, he’d move on.
Please consider identifying and building on his strengths. If there is not one subject where it is imaginable that he could get an A, his strength has not been found yet. How about cooking? It may be worthwhile advocating for organizing an after-school cooking club (if not at school then maybe at a community center or at home).
Positive feedback, not just in terms of grades, are a powerful motivator for success. And of course, success means different things for each person, but most of us feel that happiness and self-fulfillment are a big part of this definition. If we cannot dream it, we’ll never come close to finding it.
May 23, 2018 @ 1:27 am
Amen GP. Everything you said I completely agree with.
My son moved out last week. He found college roommates who he trusts. He couldn’t be happier.
And he loves to cook. Maybe he learned a few things from me along the way.
He even met with a job coach today. I tend to reach out via email to our case worker at Regional Center when my son needs assistance. They scheduled the job counselor meeting and I couldn’t be happier.
I hope Jack finds a hobby like Taekwondo, piano, singing, boy scouts, or all of the above like my son did. These kids have talents that need to be discovered. I hear in your writing that you aren’t giving up hope. Lean on all of us that have walked in your shoes ?. And keep being the incredible mom that you are. I’m a fan.
May 21, 2018 @ 3:57 pm
You are doing an AMAZING job!
May 21, 2018 @ 5:20 pm
Here’s something I wish someone had told me. I have a just-turned 18 year old son on the spectrum. He’s brilliant and has always had straight A’s. Guess what? Real life doesn’t have report cards. Getting a 4.0 does not mean a person is ready for college. Grades measure ONE THING and that has NOTHING to do with coping skills, independence, or executive functioning.
I used to think it sucked being the mom whose kid couldn’t play sports well, or be on a team that’s competitive like my other mom friends. But I figured since my kid was such a great student it didn’t matter–he always had a bright future ahead of him. He could got to a fancy college and be the next Einstein. That’s a bunch of crap too. Getting straight A’s (or any A’s) in high school does not mean one is prepared for the real world.
Being a kind human being, taking care of one’s physical and mental health independently, being happy because one has confidence in social settings, knowing how to cope with anxiety in a healthy way. Those are the achievements that parents need to feel proud about. Those are the skills that matter in life.
Teaching your child how to be an independent & happy adult–that’s the report card that matters in the long run.
May 23, 2018 @ 4:16 am
So very true!
May 21, 2018 @ 7:57 pm
Thank you for sharing your journey, what you give to others is making ripples of hope. You’re an amazing mom. None of us have all of the answers, and some of us get struggles that could crush another mom. Thanks for the hope.
May 21, 2018 @ 8:32 pm
Thank you so much for writing about Jack and what you’re feeling and thinking…I’m feeling all of those things too and you help me feel less alone. And anyone who can help me feel less alone in this struggle to raise my son is a Godsend. And that’s you.
May 21, 2018 @ 9:21 pm
Carrie, I love you. Terry
May 23, 2018 @ 4:18 am
I so get what you mean, Carrie. Every single word. I remember when we first got my son’s diagnosis, we were all fired up, ready to conquer the world. As the years pass, we start to realise what we believe in our reality is not always their truth. My son is non-verbal with extreme sensory issues. So now we strive to help him feel confident and very loved. And we live for those moments he fills our house with bursts of laughter. One day at a time is our new agenda. Thank you for always sharing your feelings and thoughts xxx.