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,
