What My Sons on the Autism Spectrum Have Taught Me

As I sit down to write about what my sons have taught me through their struggles and triumphs living with a disability that they might not fully understand yet, I realize it’s going to be difficult. It would take far less time to list what they haven’t taught me. I just celebrated my seventh Mother’s Day. I was 25 and naive when my first child was born. Go ahead and do the math. I didn’t know what I didn’t know. I mean, I did a lot of babysitting growing up and I was a nanny for twin toddlers in college, so obviously I was qualified to be a mother, right?

I didn’t know that the only food I’d be able to keep down for the first four months of pregnancy was Kraft macaroni and cheese. I didn’t know I would call my pediatrician’s emergency line at ridiculous hours for ridiculous reasons (“Why is he sleeping so much?” “Is green poop normal? Google told me it could indicate too much iron.”) terrified that I’d miss something. I didn’t know I would miss something. I would pass off my sweet, docile toddler’s dramatic and overnight behavior change just before his 3rd birthday as acting out because of the new baby coming. I would blame his meltdowns on attention-seeking while I was consumed with caring for a baby and his father traveled. I would tell myself the appearance of phobias were just things he’d grow out of and that all kids were sensitive to the shrieking of baby brother. I let people tell me he would adjust to kindergarten when he was 5. That was one of the most crucial lessons my eldest son taught me. He taught me not only to listen to him but to also listen to myself and trust my mom instincts. I believe God gives us those instincts for a reason. No one knows your child like you.

I pulled him out of school under the wagging fingers of the school social worker, principal and teacher, who believed the problem was me. I was being too soft. That his hands clamped over his ears in the lunchroom, the tears rolling down his 5-year-old face, and the gagging at hot lunch day were not indicative of something more but a deliberate act put on by a child who simply didn’t want to go to school. But I had swallowed and indeed fed myself the “kids do this” line too many times. I have always gone far beyond being a people-pleaser, struggling most of my life with anxiety over what people think of me. While counseling was a huge tool in my overcoming this, it was my son A who taught me that what people believe about me is not nearly as important as what I believe about myself, and others’ opinions can’t hold a candle to what’s best for my child. A taught me that I can’t control what people believe, and just because someone believes something doesn’t make it true. When A was diagnosed with autism spectrum disorder at 6 years old, he taught me about self-forgiveness. I had to forgive myself for what I didn’t know. It had been wrong of me to punish him for meltdowns he couldn’t control. He was teaching me how to parent him and he was teaching me how to be kind to myself.

 

When I began homeschooling A, it was truly my job to teach him, and it was daunting at first. Once again, he’s taught me so much more. Some days would make me question myself again. Maybe everyone’s right; maybe I can’t do this. He’ll fall behind. But they weren’t and I can and he didn’t. A year of intensive therapy, an amazing hybrid school where homeschooled kids attend small classes twice a week, and a lot of learning later, A has blossomed in a way I could have only hoped and prayed for. Homeschooling is absolutely the right decision for him, despite the well-meaning advice from naysayers, including therapists. A taught me to have confidence in myself, and in him. A taught me that the toughest situations can get better with a lot of faith, hard work and patience. A taught me that the autism diagnosis I was so afraid of is not a prison sentence but merely a roadmap, a tool. The autism that makes it difficult for A to participate in large groups, the anxiety that makes sounds, textures and smells hard for him, also makes him understand others’ differences. When A sees a child throwing himself on the floor in the grocery store, he will be the first to say, “I feel bad for him and his mom. It seems like he’s having a really hard time.” He has compassion for a situation that many adults sadly approach with scorn and assume to be “bad parenting.”

I can’t leave my precocious son E out of this conversation. E was spitfire before he was born. He was so active, his little feet knocked one of my ribs out of place! Little did I know this little boy would change my flat screen world to three-dimensional HD color. E started teaching me when he was an infant. When I say he never slept, I am not exaggerating. The first time he ever slept more than 90 minutes at a stretch, he was 15 months old. The well-meaning advice-givers told me to let him cry it out and that I was spoiling him. Now, I am not against the cry-it-out method itself, but E needed to be held. He needed to rub/pinch my arm and comfort nurse. He needed touch and motion to feel calm and secure. Since he was conceived, E and I have had an almost uncanny connection. I knew I was pregnant with him even when test after test showed one line. You can’t not know E is there. If you know him, you know what I mean!

E has always taught me what he needs. To this day, E still needs touch to fall asleep or to calm down. E taught me that it is possible to do whatever you need to do for your children, even function on an hour’s sleep. Moms are superheroes, whether your child is “typical” or has a disability. When E started preschool at the same school A attended, he taught me to be flexible. We loved (and still love) the school, but it became apparent that E needed more than the school could provide. Due to his difficulty following verbal instruction, E was not able to complete our school district’s evaluation process accurately. He did not qualify for special education that spring, at 2 and a half. In the fall of his second year of preschool, I returned to the district’s early childhood center armed with the results of a private evaluation completed by an occupation therapist. The results showed that E had dyspraxia and sensory processing disorder. He was reevaluated at the early childhood center and this time he qualified for special education placement, a full IEP, and bus service. E has been obsessed with school buses forever, so this was and still is thrilling for him. The child who struggles with transitions runs out to that bus every day like it is a flying carpet arriving to take him to Disney World.

E taught me persistence. E taught me advocacy. E taught me that one person’s school bus is another person’s golden chariot. E teaches me courage every day. The first day that bus arrived to take him to a brand new school, he jumped on and bravely waved to Mommy from the window, headed for the unknown. E teaches me that life is an adventure. When I mention in conversations that E receives special education services, I’ve been met with an, “I’m sorry.” Please don’t be. I’m not. E is thriving. His speech has really taken off.

When E received his official autism diagnosis at 4, it wasn’t a surprise to me. Applied behavior analysis therapy was recommended. I was nervous and overwhelmed. A lot of hours, a lot of therapists coming and going through our home, and varying opinions in the autism community left me unsure. Still, we tried. The benefits are already apparent to me. E has taught me patience.

E teaches me tolerance and compassion. Public outings can be a challenge. He jumps first, asks questions later. If you’ve seen me out and about with E, you may have seen him elope and me running after him. E does not do this to be naughty. He does it because the world is his playground and when he sees something interesting, he runs straight for it. His expressive language is delayed, and verbal communication is a challenge for him. It is difficult for him to stop and say, “Mom I want to go see that.” Conversely, E is prone to sensory overload. When he needs to escape a crowded, noisy, bright place, he will simply take off. He may also seek sensory input by touching things, repeating phrases or making loud noises/speaking loudly. Sadly, people gawk at E when he does these things. You can’t look at E and see that he has a disability. E has taught me to have a thick skin. Yes, public outings can be exhausting sometimes, but I will not deprive him of going to fun places like the museum or Rainforest Café.

E has taught me that there’s often more to behavior than meets the eye, and I’m not just referring to autism. I feel like I have become a more accepting, less judgmental person all around. I still have a lot to learn, but I would like to think I’ve learned to choose kindness over judgment more often. My child on the floor of the Lego store is not being a “brat.” He is experiencing sensory overload due to a lot of people, fluorescent lights and colorful displays. Likewise, the mom on her phone at the park may be burned out. This might be the first time her kids have entertained themselves all week and she’s finally sitting and catching up with friends or reading an eBook. The person with the bad temper who seems angry at the world may really just be sad. I’m not saying behavior should be excused, but there’s usually an explanation. E has taught me that the world still has a long way to go when it comes to acceptance.

I believe my boys have taught me more than I could ever teach them. Seeing them try, struggle and try again teaches me strength. Being in tune to their needs has helped me to be in tune with my own. When A goes up to his room with noise-canceling headphones, his blanket and his Iron Golem stuffed animal, he teaches me it’s not only OK but important to take a break when it’s needed. When E runs like the Energizer Bunny, he teaches me to never apologize for uniqueness. My boys have taught me that some people will never understand, never try to understand, and that’s OK. We won’t hide away to make them comfortable. My boys have taught me love beyond measure, patience I didn’t know I was capable of, self-care, grace, and that the world is a better place with them in it.

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Thinkstock image by Design Pics/Don Hammond