I didn’t know why I had to be wrapped so tight in that blanket. It was an insatiable need to feel comfort, to be surrounded by something, and it had to be perfect. The pillows, the exact comforter, the perfect spot on the couch—it was time consuming, and the need was overwhelming. Eventually, I’d get it right. I’d have a brief moment of contentment, and within moments this horrible feeling of discomfort and desperation would overwhelm me. I had to move. All the work, exactness, and time was for a few, short minutes, sometimes seconds, of pleasure, and then it would be over. I would be off on my adventure. I spent my early years sensory seeking. Arms extended behind my back as I ran to and fro. I looked typical in a lot of ways. I spoke. I played. I interacted. I was shy. I was on the autism spectrum.
We talk about how much we love our kids, how amazing they are..
Autism is hard. It’s grueling, endless, emotional, stressful, relentless– and it’s always there. Sometimes it’s lurking in the backdrop of life, and sometimes it’s front and center controlling every aspect of life. Some days it takes everything just to hold on. There are always battles to be fought, places to be, things to consider, and behind you is this person waiting for you to clear a path for them.
I wish I could say it was just the sleepless nights, the tantrums, the meltdowns, the failed grocery attempts, the medicine dance, or the tales of poop.
That’s the day to day– always buzzing in the background are schools, insurance providers, doctors, specialist, psychologists– all playing a crucial role in life.
And then there’s the end of the day– looking in the mirror questioning every choice, decision, the heavy heart, the heartbreak, the quiet moments when you look over at their sweet faces and wonder, “Have I done enough? Am I doing enough? Will he ever understand how much I love him? How far I would go for him?”
I wish I could say autism was easy. It’s not. It’s life changing, and some days I don’t know if I have what it takes to be the parent this child needs. I guess the silver lining is he thinks I am the cats meow. He loves his mama. And, I love him. That has to be enough.
What would I say to eight year old me?
Maybe I would say you’re not different, you’re free.
I’d tell her to smile and not frown,
The sinking feeling is part of you, but you won’t drown.
You’re going to be fine, becoming in this madness takes time….
You don’t have to be like the rest,
Simply, do your best.
You have a gift, and you will use it well.
Don’t spend your time worrying—don’t dwell.
Your strengths are enough,
They’ll carry you when life’s rough.
Be kind to yourself, eight year old me.
Don’t spend all your time lost in your mind,
There’s a world out there, go see what you can find.
Step out of your box, and try something new.
You spend too much time feeling lonesome and blue.
The vaccine conversation has been a hot topic for years. There are a lot of reasons people either support or don’t support vaccinating their kiddos. As a new mom, I did a lot of research. Ultimately, I decided to vaccinate Liam using a vaccination schedule I was comfortable with– not the standard pediatrician schedule. We started vaccinating…
At 4 months, Liam experienced his first “regression”– hyposensitivity brought on by his 2 month vaccinations. I realized this while he was receiving his 4 month shots. He had screamed uncontrollably when he was given the two month vaccines, ran a fever for about 11 days. I was so bothered by it, at his four month shots, I made his dad come with me. I prepared him, “OK, he’s going to scream his little head off. It breaks my heart. You handle it.” The nurse gave him the shots, and he never flinched, moved a muscle, made a sound. It was like someone sucked the air out of the room. I knew we were on the wrong path. I continued with vaccinations. The next round was the DTAP, and this was the last immunization Liam received. He ran another high fever for days, lost all eye contact, screamed most of the time, and there was no more “happy baby.” He lost the first words he had developed, and lost all interest in interactive toys.
Do I think Liam had a predispostion for autism? Yes. Do I think he would have probably been on the spectrum had I of never vaccinated? Maybe. Do I think vaccines injured my son? Yes. Do I think vaccines are the cause of autism? No. I don’t place blame for my son’s autism. I don’t have to look far to see where he might have inherited some of his ausomeness. For us, it was the combination of genetics, environment, and toxins. How do I know all this? I’m not a doctor. I’m not a scientists, a geneticists, or Einstien. I’m a mom who watched her child regress after each injection. I’m a mom who removed and limited toxins, and watched him progress. I’m a note taker, observer, researcher, and I know what happened in my own home. I don’t think vaccines are evil, or a root cause for autism. In fact, I support vaccines. I also support an intelligent vaccination schedule, single dose vaccines, and genetic testing or a preliminary system that would identify children who may be at risk for vaccination injuries.
One of the wonderful things about being apart of the autism community is sharing information, stories, experiences, successes. Like any community, there are “hot topics,” issues, and “no-no” words. I’ve seen a lot of heated conversations about vaccines among other issues. I look at debates from a completely different standpoint. Your choices are your choices, and mine are mine. There is nothing to debate. At the end of the day, part of my responsibility as a parent, is to make the best decision for my child with the information I have and my experiences. I don’t need a group of people to agree or validate the choices I make for him. I am my son’s mother, and I make decisions based on our journey.
I knew something was different. Something about me was not like the others. I watched. I listened. I tried to listen. Why do they do that? Why? I don’t understand. Why are all little girls like that? Why am I not like them? Oh I’m tired of noticing.
My first “best, good friend” was a neighbor boy that no other child was allowed to play with– I was quiet and reserved. He was clearly, what would now be diagnosed as, ADHD. Needless to say, a lot of time was spent watching this vibrant, busy boy. The boy with blonde hair and blue eyes, who came to my door so many times, and I would let him in. There was a price to being friends with the neighborhood “bad” child, especially when you already have your own bag of awkward.
The cost? He was my only friend. I wasn’t invited to play, to spend the night, to the parties in the neighborhood. We would watch as kids would crowd into a house with their presents and balloons. All those bodies in such a small space, the smells, the noise, we were happier talking about not being amidst the chaos. But, secretly, we both hurt. Somewhere in there, it stung not to be included.
My family moved a lot. We owned our home, but my dad was a dreamer. He was a doer, and we were along for the ride. I’d wave bye to my best buddy, and feel guilty for leaving him in such a place.
They’re mean. They’ll hurt his feelings, and I….I won’t be there. My poor friend.
But…we’d come back. He’d be taller, bigger, never quieter. It was the circus friendship, anything was possible…
Finally, we moved for the last time. We never came back, and I never saw him again. Weston. His name was Weston.
Friendships became interchangeable for a long time. It comes with moving. It comes with poor understanding of social norms and expectations. Do you know every classroom has the tall girl, the chubby kid, the one freckled boy, the jock, the smarty pants, and the smelly kid? They all have it, and somehow, they all sort of look similar. I learned to study everyone around me. I was always looking for clues into their world.
Oh, I could talk. I could do all the things expected of a developing child. In fact, I was advanced in a lot of areas. I knew all the answers in class, blurting them out uncontrollably. I couldn’t help it! Wasn’t it obvious to everyone else in the room? If I didn’t know something, I learned it. I did it with speed. I stayed far away from things I couldn’t understand. There were things I could not comprehend.
So, I dribble, run, and then shoot? Wait. When? At what point? Can I just read? I’ll read the playbook. Yes. That’s what I’ll do.
I remember childhood being confusing, and everything impacted me deeply, honestly, and it hurt. I was happy. But, more than anything, I wanted to understand.
To do this blog justice, I feel like I should start at the beginning. What beginning? Mine? His? Ours? I’m not sure….and, because I don’t know, I stare at the page. I wonder which direction to go.
The beginning was so long ago, and it seems like so much is better left unsaid. But, somehow I need to say it. I need to scream it. I can’t. Who would I scream to? Who would listen? I’m not sure anyone would care. After all, it was long ago. Time has moved everyone on, propelled them forward, into their lives. But, for me, I am still there– a cold day, a broken heart, a time I remember and would love to retrace with my eyes closed….I want to feel them, touch them, tell them, “It’s ok. I’m ok. You are ok.” But the truth…..what is the truth? We survived, and we’re here.
It takes something deep inside the spirit to rise above. It takes a lot of love– love for yourself, love for others.
I will die believing all we needed was more understanding of the human condition– that we could have been everything we wanted to be had we of understood the true nature of humanity….
If I were to blog,
I would blog in a fog, a deep, dark smog of a fog, if I were to blog.
If I were to write, would it cause a silly fight?
Would I smile with delight?
Would the readers see my plight?
Blog. Blog in a fog, with a happy, smelly, dog. Blog.
“But, I can’t,” I chant.
I don’t have the time.
I don’t have the rhyme.
I don’t have the sparkle or the shine.
I’ll stick to what I know.
Into the fog, I won’t go.
Blog, smog, fog, dog.
I can’t do it. I can’t blog.
My ode to Dr. Seuss…..
Happy Birthday Dude.