My son was born after midnight during the cooler days of May, before the Central Valley could blaze triple-digit temperatures.
The delivery room was packed full of people. The doctor, several nurses, my husband, my parents and my mother-in-law were in attendance. As my son emerged into the world, I expected him to gasp and then cry about the abrupt ejection.
He did not.
Instead he was quiet and blue. The umbilical cord was wrapped around his slender neck several times. Of course I didn’t know that yet, but the jubilant faces of the others gave way to peaked, pinched expressions.
When I asked what was wrong. The response was, “Nothing. Everything’s okay. It’s okay.”
The reassurances scared me. I was only 20-years-old, but already I knew people lied when things were really, really wrong.
Did I not push hard enough or fast enough? The doctor had yelled at me to stay focused, but I kept passing out. He had to assist the delivery with a vacuum device.
Before I could convince myself my baby wasn’t coming home, he cried.
Once assured my son would keep breathing, the doctor plopped him on my belly. When his skin touched mine, I panicked. My stomach felt as slippery as satin sheets on a waterbed. The baby was going to shoot right off and smack the floor. I grabbed on to him and asked for a blanket — something, anything — to give some traction.
Maternal fear knifed sharp and deep. The days of planning the nursery, rubbing my swollen belly and wishing my son would be born sooner, rather than later, felt whimsical. What the hell was I thinking?
I searched for my mom. She sat on the left side of me and appeared happy, but exhausted.
“Mom.” I felt shaky. “I can’t do this. I can’t.” I wanted her to hug me and to tell me it was going to be okay. I wanted to be reassured.
It took her a moment to process my proclamation. When she figured out what I’d meant, she chuckled. “Well, too late now kid. You already are.”
Huh?
Before I could say anything more the nurse brought over a blanket. I wrapped it around Jay’s mottled pink and white body. Jimmy reached over and smoothed out his hair and traced his fingers across his greasy newborn skin.
As abrupt as it felt, my mom was right. I was already doing this. I was already this kid’s mom.
I sucked in a deep breath, forced my fear aside, looked down at my son and fell in love.
Comparisons
I pounded my fist on the bed. “I can’t do this. I can’t.”
Jimmy looked at me from his computer chair with surprise.
“I don’t want to be a mom anymore. It’s so freaking hard.”
Jimmy nodded. He had heard my outburst at Jay a few minutes earlier.
“Can’t I just quit? Just for one day?” Man, I’d love to have one happy-go-lucky day without the worry and stress. Maybe someone could conk me on my head so I’d forget my obligations.
I just needed to release the fear that constantly gnawed at my gut.
My baby boy, now 14-years-old, was struggling in school again. Heck, he had been marched to the Vice Principal’s office earlier in the week because of a classroom meltdown.
Luckily the VP knew that Jay was a special kid. He knew what looked like disobedience in another student wasn’t the same for my son.
Jay had autism.
They worked through it.
However, I didn’t. Jay’s shutdowns were increasing and his grades were falling. Again.
I felt like the world we had so carefully constructed for him was cracking apart.
I lamented to Jimmy. “Why can’t he just do it? We’re all working so hard for him– why can’t he pull himself together and at least try? The other kids in his autism program do it.”
This wasn’t the first time I had wondered why Jay couldn’t be like the other kids. Only, before, the other kids were neurotypical.
When Jay was a couple months old, I saw babies his age cooing and laughing at people. I wanted him to do the same.
When he started preschool and hid under the desk for weeks after the other kids adjusted – I wondered why he couldn’t go out and play like everyone else.
When he still couldn’t ride a bike at age ten, I forced the issue. I grabbed the new bike he’d gotten as a gift and made him get on it. I pushed and ran with him for part of the way and then, against his pleading request, let go.
If he had no other choice, he’d just do it. Right? It was like what other people said – I wasn’t being strong enough with him. I coddled him too much. I just needed to make him do it and he would.
“Peddle. Just peddle the bike Jay!”
He didn’t. He wouldn’t. The bike slowed down and tipped. Instead of sticking out a foot or a hand, Jay sat stiff. He landed on the curb still gripping the handle bars.
I was pissed. All he had to do was peddle. Now he was banged up and bruised up. Why didn’t he just ride the damn bike?
It wasn’t until Jay was thirteen I got my answer: Autism.
Acceptance
Just over a year ago, Jay’s diagnosis helped us find him a school with an autism program.
Nowadays, mostly, I’m shouting out about his triumphs. I share with family and friends his dreams of becoming a wildlife conservationist or that he’s crazy about Indiana Jones, Pirates of the Caribbean and Naratuo. I let them know he’s made a gaggle of friends and gets asked to sleepovers and birthday parties.
Jay’s recent progress has felt like a miracle. Everyone’s rejoiced.
So why was I freaked out? It took me a couple of days – after my rant to Jimmy – to work through it.
What I discovered? The problem wasn’t Jay. It was me.
Sometime after his diagnosis, my expectations switched back to default mode.
Now that Jay had support, he’d get right back on track. He’d graduate high school and go to college. His meltdowns and setbacks would be at thing of the past. Heck, one day he’d even get married and make me some grandbabies.
What did I forget? Oh yeah, Jay still had autism.
That’s right, the key component to all of this – I just glossed over it. Mentally I put us back on the everything-is-going-to-be-okay-forever-and-ever track.
Society’s milestones of youth and adulthood applied again. I boxed us right back into the pretty package of social norms.
When Jay didn’t behave according to that plan – when he didn’t keep up his end of the fantasy – I had my own meltdown.
The truth is I’m scared. I don’t know what life for Jay is going to be like as an adult. I don’t know that he’ll graduate high school or college with his peers — or ever. What other parents can expect, I can’t.
What I do know? Before I can ask the world to accept or have tolerance for people with autism, I have to do it first. I have to accept Jay for exactly who he is and let him set the pace.
This means no more preconceived deadlines or we’re-on-the-right-track checklists.
I have to stop and take a deep breath, shove aside my fear, look at my son and love him.
We’ll do this together.
We already are.
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Genevieve Hinson is a social media coordinator for Children's Hospital Central California. She's also a writer, wife and mom to two boys and a girl. The opinions she expresses here are her own, as is her obsession for coffee.
[...] However when writing I’ll use the term autistic if autism is the focus. For example one of my posts: Learning to accept my autistic son. [...]
Well done, Genvieve. Well done.
T.
Profound and beautiful.
Featured on Good Mom/Bad mom on the Chronicle: http://tinyurl.com/6lwlue
“I have to accept Jay for exactly who he is and let him set the pace.”
I can’t even imagine how difficult this is for a parent of a child with autism. But in your understanding of what it needed of yourself as a parent of a child who is not neurotypical, you speak a profound truth for all parents of all children.
Our children can be pushed and prodded to greater or lesser extents, and whether or not they should be, but the final word is that we have to accept them for who they are so that we can fully love them – and so that they can fully love themselves. With the support and enthusiasm in helping them to be who they can be must come the love for who they are. Isn’t that all that anyone wants in this life?
Thank you for a beautiful, honest, and thought-provoking post. I’m so glad Jenny linked to you.
I’m so glad Jenny linked to you as well…this was such a touching and beautifully crafted post.
(I’m in the central valley, too!)
what a beautiful post. You may not think that you are dealing with your challenges very well, but anyone capable of these words has more grace than they can possibly know. I wish you and Jay all of the best.
As a parent of a 8-year-old with a rare autoimmune disease I totally understand your frustration. But it sounds like you are doing a beautiful job. Hang tough and press on.
I would cry about this if I only had the energy. I’ve been dwelling on expectations for years, trying to explain things to people that I didn’t understand myself until we got a diagnosis a year and a half ago. People just tell me he’s a teenager, no one understands……..but now I have you.
[...] found this today…….It says so very succinctly what I’ve been trying to explain for years to [...]
[...] Editor’s Pick by Arianne from To Think Is To Create: Having autistic children myself, reading Genevieve’s post about her autistic son moved me deeply. I knew readers with special needs kids in their own family, or those who have a friend or loved one suffering, would all relate to and be inspired and comforted by this beautiful post. [...]
Beautiful post.
My 14 year old son has Aspergers. All his pediatricians tried to push his symptoms into the ADHD category and even now the diagnosis comes through my efforts at research and finding a psychiatrist willing to make it (even then she just went along with it and never really discussed anything with me–perhaps to hide her own ignorance of autism and Aspergers). Doctors need more training to be able to spot the signs of autism and maybe then parents will recieve help earlier. I understand your pain and frustration becuase I have been down that road. I too hope for my son to be able to function well socially when he reaches adulthood because it is so painful to watch other children reject him because he is different from them now.
What an incredibly honest, and poignant, post. That eternal hope that keep us humans trying to make right, or okay, the special circumstances of our loved ones, is part of our inherant nature.
The fact that you speak honestly, and openly, on this subject, increases my respect for you many fold. I feel a little embarrased saying that, only because I don’t really know you. That, and the fact that I am not dealing with this particular issue myself. It doesn’t make my feelings any less true. Many of us deal with circumstances, albeit different, but still a weight.
God bless you and your family!
Thank you for stopping by and sharing your thoughts. I’m always surprised by the support on this particular post. When I wrote it, I almost didn’t hit the ’send’ button. Worried it wouldn’t be understood. Seems like there’s a higher expectation of parents with special needs kids to be OK with everything and not have their own feelings and emotional rollercoaster that goes with it. Doesn’t mean we love our children any less, just means we might need a bit of extra emotional support from our friends and family from time to time
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I read this post on BlogNosh; very well said. My 18yo is blind and has Asperger’s. He’s made incredible progress, but meltdowns still happen. The future is cloudy and scary, but we can do it.
We already are.
Thank you so much for sharing your story and stopping over here to let me know you read the post. Made my day.