What my Sons 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 don’t fully understand (especially my four year old) I realize it’s going to be difficult. It would take far less time to list what they haven’t taught. I just celebrated my seventh Mother’s Day. I was twenty-five and naïve 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 that 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 that I would miss something. I would pass off my sweet, docile toddler’s dramatic and overnight behavior change just before his third birthday as acting out because of the new baby coming. I would blame his violent meltdowns on attention seeking while I was consumed with caring for a high needs baby and his father travelled. 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 that he would adjust to kindergarten when he was five. 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. 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 five year old face, and the gagging at hot lunch day were not symptoms of a problem 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 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 six 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 that 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. Every day that we spent locked in battle, every dent door and torn up math sheet would make me question myself again. “Maybe everyone’s right; maybe I can’t do this. He’ll fall behind.” 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 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 ninety 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 sowed 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 super heros, whether your child is typical or has special needs. 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 two 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 and 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 special ed 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.

           

E’s meltdowns and aggressive behavior have increased lately. When he received his official autism diagnosis at four, it wasn’t a surprise. 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. E has taught me patience.

          

E teaches me tolerance and compassion. Public outings are a struggle with E. He jumps first, asks questions later. He has no concept of danger. If you’ve seen me out and about with E, you’ve probably seen him elope. You’ve seen 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 like many on the autism spectrum, 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 over load. When he needs to escape a crowded, noisy, bright place he will simply take off. He is quite literally fleeing with no regard to where he is going or if an adult is coming with him. E will also fall on the floor and kick and scream when he gets over loaded. He may also seek sensory input by touching things, repeating phrases, or making loud noises/speaking loudly. Sadly, people gawk at E like he some sort of exhibit 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, it is exhausting and sometimes even heart breaking to take E to a restaurant, the grocery store, or the children’s museum, but I will not hide him away or deprive him of going to fun places like the museum or Rainforest Café so that the world will be more comfortable.

           

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 flailing 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, colorful displays. Likewise, the obnoxious person who doesn’t know when to be serious may be insecure and using humor to cope with social anxiety. 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 is 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 cancelling headphones, his blanket, and his iron golem stuffed animal, he teaches me that it’s not only okay but important to take a break when its 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 okay. We won’t hide away to make them comfortable. My boys have taught me love behind 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,

When My Son with Autism asked, "Mom, Do I Have a Disability?"

I knew the question would come, in one form or another. I thought I was prepared. I'd read countless articles, met with therapists, had late night discussions with my husband. My search history is filled with variations of the question "How do I tell my child he has autism?" This type of preparation is not unique to special needs parents, although the topics may be. Eventually, as a responsible parent, you know you will have to have uncomfortable conversations with your kids. Unfortunately, mumbling awkwardly doesn't satisfy when your child asks you an important, deep philosophical question in the drive through line or as you're drifting off to sleep. You don't know exactly when the moment will come but you know it's inevitable, so you prepare.

My moment came on a family vacation just over a year after my oldest son's autism spectrum diagnosis. I had prepared for it. But I wasn't prepared for it.

When I became a parent I knew I would face  the big questions. Yet it's not the sex talk that's been on my mind (although that will come). For my husband and I, since D-day the questions hasn't been if we tell our son he's autistic, but when and how. These questions are individualized and unique to the family situation; I don't intend for this post to be a piece of advice. I'm no expert; I'm just a mom navigating without a road map.

I remember my husband and I watching the show Parenthood when out oldest was a baby. One of the characters, a young boy named Max, is diagnosed with Asperger Syndrome. Max's well-meaning parents do not tell him about his diagnosis, although they do seek the help of a behavior aide. Eventually, Max overhears a heated conversation between his dad and uncle during which his diagnosis is revealed. Max is angry, confused, and devastated while his parents run major damage control. My husband and I rather sanctimoniously agreed that we "would never" keep something like that from our child. Turns out revealing this information isn't so straight forward.

Our son also has high functioning autism. When he was diagnosed, we felt that it was important not to hide the diagnosis from him as we didn't ever want to make it feel like it was some kind of shameful secret. Again, our personal situation. The other edge of the sword? Our son also lives with anxiety disorder NOS. He is very sensitive and he cares what people think. He is naturally self conscious. He perseverates. How would we tell him about his autism without him over-identifying with it? How would we keep him from feeling like something was "wrong" with him while at the same time circumventing the trap of minimizing the very real difficulties he faces as a result of his autism?

The consensus of my research indicated that when a child begins asking questions or making observations about a topic, you know they are ready for an explanation. Obviously, the depth of the explanation will be adjusted based on the child's age and developmental level, The rational is that once a child is observant enough to begin asking questions giving them an explanation is far better than leaving them to ruminate (and believe me, our child ruminates!) and come up with their own version of reality.

I first discovered this information when my research history contained variations of the question: "How to talk to kids about a parent's depression?" Interestingly, when this question came up, ("Mommy why do you take that medicine every day? Why do you have to go to the doctor so often? Are you sick?") I was surprised how readily my son accepted my explanation. While I thought was being discreet, he noticed the pill bottles on the counter and the frequent doctor appointments and worried I was sick. While it was not a conversation I ever wanted to have, I explained to him that yes, I am sick, but my sickness is in my brain so you can't see it. But, it's okay because my medicine helps me and I go to the doctor so often because he helps make sure my medicine is making me better, I think he said something like, "Oh, okay. Can I go play Minecraft now?"

So, when the day came, I figured I'd be prepared. It turns out some things you just can't prepare for. Life is not an exam to be studied for. If only.

We were perusing the science museum in San Diego. My husband was with our youngest playing Legos while I trailed A and my niece through the genetics display. I was thinking about something important like where we were going to go for dinner, when I noticed my son staring intently at a chart about genetic disorders. He was uncharacteristically quiet and then he turned to me and said, "Mom, do I have a disability?"

I deflected. I asked him what he thought and why he asked that. That night during tuck in  when most of our heart to heart discussions occur, I readdressed his question. I asked him what he'd meant earlier when he asked if he had a disability. He replied, "Well, I was just wondering, because you know how I'm different and stuff?"

Ah, yes. Different. He knows he's different. He struggles with things other kids don't. He notices things other kids don't. Subtle social norms are often lost on him. And he knows it.

As badly as I wanted to appease him with some "different is not less" "be who you are" "we are all unique" platitudes, I knew his question was deeper than that. He's deeper that that. The time had come. Except all preparation went out the window. There's no script for this type of thing; there just isn't. I took a deep breath and told him he had something called autism spectrum disorder. I asked if he knew what that was and he shook his head. Now, the hard part. A label is one thing, but autism (like any condition) is more than a collection of bullet point symptoms. I told him it meant in some ways his brain works differently than a lot of other people. It means he has very special gifts like being able to remember things and being able to learn so many facts of things he is interested in. I told him that it also means certain things are harder for him, like doing something new, loud, noisy areas, or coping with surprises/changes in plans.

He nodded. I told him we would do everything we could to help him with the things that are more difficult and continue to encourage him in the things that are strengths.I told him that the world needs people with all types of brains and that we were proud of him and loved him just the way he was. He asked me if other people have autism or is it just him? I said that many people have autism, in fact a few people he knows! We talked about other "disabilities." I prefer special needs to the term "disability". I know it's just semantics, but it's the term I'm most comfortable using. He asked me if everyone has a disability. I said no, but everyone does have things that they deal with that are hard for them, and often you can;t see it, that;s why it's always important to be kind.

He yawned and rolled over, which is usually the signal that his mind is finally slowing down for sleep. I asked a question of my own. "How do you feel about learning you have autism?"

With his back still to me, he shrugged one shoulder in that eerie teeager-ish way of his. "I don't really care. I mean, I don't think it really matters."

Out of the mouth of a seven year old. I couldn't have said it better myself. In moments he was asleep and "the talk" was over. But I'm sure it's not over. These talks evolve but don't really end. At least I have a few years before the big sex talk, right. RIGHT?