I had one of those days yesterday, the kind that left me with a kink in my neck that prevents me from looking up from my beat-up Uggs. The kind of day that prevents me from looking up at all. Yesterday, I cried on the playground of my son’s preschool. It’s been a decade or two since I let it all out in the midst of flying balls and staring children, but let me tell you, it is still just as embarrassing.
It was only for a second. I reeled it back in as quickly as it escaped, but it lasted just long enough for me to reveal my ugly-cry face to my son’s preschool teacher. She was probably having a hard enough time already as she was coming to me to talk about my autistic son’s behaviors in a general education class.
Why is my autistic son in a general education classroom? Well, I could argue it’s for inclusion or exposure, but the truth is that I fought to keep him in the general education system because it just felt right to me, as his mom, at the time.
When Henry was not talking at all at two years old, our pediatrician suggested preschool. Get him around some other kids and the words will come, the doctor advised. Give it three months.
That’s what we did. I was so nervous putting him in preschool before he could ask for water, or even for me, but he needed something. So did I: I needed a break.
Three months came and went and, while Henry adjusted to nap-time and separation anxiety in a “typical” way, the words did not come. Instead of lessening my fears, preschool exposed new ones I had yet to discover. Still no words came. When I came to pick Henry up each day, he was always playing happily and he was also always playing alone. Maybe he was playing in close proximity to other children, but he was never playing with them.
It was like a seam in the universe was stitched between my boy and this world. While I was made aware of Henry’s solitary nature, I was always comforted by the teachers and preschool director, who patiently reminded me that some children take longer to adjust than others. We waited, and a year went by.
Within that year, we got our answer: autism. It all added up. It was a hard pill to swallow, but it also made sense. In a way, the diagnosis was preferable to the potential diagnosis. Either way, I’d be worrying, but at least now I knew why.
We did speech therapy and child development class and requested an IEP meeting with the school district. They offered us a special ed preschool program where Henry would receive speech and occupational therapy weekly and be amongst his “peers.” The school within our residence district happened to be the best program in the county. With high hopes, my mom and I went to take a tour.
We walked into each classroom with smiles on our faces, eager to hear about the different activities, but I couldn’t help notice all the self-directed children engaged in self-directed play right next to one another. When the tour came to an end, we thanked the teachers and walked to the car in silence. Opening the car door, I plopped myself into my mom’s passenger seat and began to cry.
“I don’t think I can send him here, Mom.”
She looked at me and said, “Oh honey, I’m so glad to hear you say that.”
It was my gut, my heart, and my disregard for pragmatics that led me to keep Henry at his general education preschool. At that time, the child advocate who represented us told me straight up, “I think you’re making a mistake.” I respected his honesty, but I told him that my child needs the world. He needs the world to stay with him. He needs the world to continue playing around him, circling him, while he pauses for a moment.
The world needs to be there when he wakes up. If it’s not, he may think that he’s alone and go back inside his mind to hibernate for another year. Another valuable year. I told our advocate that my son may be bullied in the general education system, but that may be better than being ignored, isolated, segregated, separated, numb, disenfranchised. I didn’t want him to be a bystander.
Maybe pain is a part of real life, and he deserves to live a real life and learn from it, as we all must. He deserves the chance to grow, thicken his skin, show others how wrong they are about him. It wouldn’t be easy, but it would be worth it. My heart knew what felt right to me as a mom. So we kept him in general education and his amazing private preschool was happy to have him stay, no questions asked.
The director of the program even shared with me that she has family members with autism and that, in her experience, social progress is the key that unlocks the doors to both speech and sensory issues. I agreed that in order for Henry to learn to speak, he needed to be spoken to, constantly, by everyone around him. That’s exactly what general education could give him that special education could not.
My child advocate strongly disagreed. “It’s not better to be bullied as a child, ever.” It was hard and painful logic to refute. I did not refute it, I just followed my heart. It’s all that I’ve done since I started on this path, and I’ve tripped and fallen plenty of times along the way, and that’s okay. However, I cannot afford to take my child down with me when I hit the pavement.
I tripped yesterday, like a child on a playground. This time, I wasn’t a child. I was a mother. A broken-hearted mother overcome with a hundred different emotions in one moment. As I listened to my son’s teacher gently break down for me that he’s struggling and that she’s struggling with him, so many feelings showed up. Initially, it was good-ol’-fashioned embarrassment. I know I don’t need to (nor should I) feel embarrassed over my son’s disability, but sometimes, I just do.
I was sad that this day had come, the one I hadn’t wanted to acknowledge as it lingered off ahead somewhere on the distant horizon of the future. This was the day my child advocate was trying to protect us from. While Henry wasn’t being kicked out of his general education preschool (he wasn’t even in trouble) this day now stood as a pillar along the rocky road I’ve been walking. It was a marker in time, a reminder, a reality check.
My son’s teacher wanted to know if there was anything she could do to help calm Henry down when he gets upset. She is the kindest soul and loves my son, and she just wants to help him, but I could see that she’s tired. I recognized that look of defeat. It’s the one you get where you’ve tried everything and it makes no difference at all. It was like looking in the mirror. She merely asked what I do at home when Henry gets upset and the ugly-cry face unleashed itself.
Her intentions were pure, and I’m so grateful that she came to me. I knew as soon as she began to speak that this conversation was different than the ones she has with other parents, because my son is different. There it is: cue the face. As if this returned realization was not enough to sufficiently and publicly upset me, there was still another layer of reality that I had to confront.
I didn’t have the answer to her question. I froze as if I’d just been called on in geography class while passing notes. Was this a trick question? Why couldn’t I answer it? It was a very straightforward inquiry. Yet I stared back at her with a vacuous expression and, like my son, I struggled to find the words I needed in that moment.
I couldn’t find them because they weren’t there. I don’t know how to calm my son down when he “melts down.” I try to comfort, love, and support him. I try to reprimand, discipline, and explain to him. I try to ignore, detach, and disengage. I try everything. To no avail.
I fail. I get pushed and kicked. I tear up, hold in, let go, and still, my son remains end-of-the-world level upset. It is defeating. It’s exhausting. It makes you want to give up.
What I didn’t have the composure to say to her in that moment is that I’ve spent the last three months of my life fighting tooth and nail to get my son behavioral therapy. I was too proud to tell her that we’d lost our health insurance over the summer. I was too emotional to explain that as certain behaviors have escalated, my family’s resources have dissipated like sand running through a child’s fingers. Instead, I just said, “It’s been hard,” and she understood.
I am left now with an emotional string tied around my index finger. It’s a conscious reminder of the changing tide, and of the knowledge that not a single one of us can predict or control it. No one can tell me what is right or what is best for my son. No one can tell me if it’s fair to his teacher or the other children to keep him there and for how long. At least not yet. Only time will tell.
It took Henry one year of general education preschool to begin speaking. It took him one year to make a friend. Not just a child who plays near him or alongside him, but a friend. An adorable little girl who is always by his side when I arrive to pick him up. His first friend, his first words, what are they worth? Are they worth risking potential bullying? Are they worth extra stress on his teachers? I don’t know. Only time will tell.
Yesterday, I cried on the playground. Today my neck is frozen in a downward position. Even though it hurts, I must keep looking up. Life is marked with pain, regardless of the road you take. It’s a patient beacon that waits for us like rest stops along the highway of life, summoning us to pause for a moment to recall that we’re all lost travelers being led by unreliable navigation systems that are constantly rerouting.
While I have more work to do, more tears in store, and (God-forbid) more ugly cry faces waiting to be unleashed, there is no right or wrong answer. There is only my heart and his to navigate daily, until and if the time arrives to nudge our hearts in a new direction.
Yesterday was a hard day, but it’s not the end of the road. I know that I must continue on and that as long as I am looking up, I will see the signs that time will mark for me along this journey. While it may hurt at times, the pain is worth every detour, rest stop, and pothole. It’s worth every tear on the playground. It’s life, and it’ll be waiting patiently, next to me, when my son pauses to look up.