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I caught myself staring at this picture of Cooper today. Look how small he was. It brings tears to my eyes every time I see it. The way he was holding my face. He was 18 months old. That tiny, angelic, little boy had turned my whole world completely upside down and inside out from day one. I was exhausted when this picture was taken. I hadn’t slept through the night in 18 months. I was at an all time low weight. I had huge dark circles under my eyes.…
I’m always amazed by typical development. Even after 14 years of being a mom. Three boys and a girl. Ages 14 down to four. Autism first. Then three neurotypical. The differences are not subtle. They are loud. They are noticeable. They’ve given me the gift of sight. I’m amazed how some kids just instinctually know to sit in a circle and walk in a line. And some don’t. Some talk. Some do not. Some grow almost effortlessly. Some stay frozen. Why, I often wonder. Why do some kids have it…
Back to school hits so differently when your child has a disability.I could pretend it doesn’t. I could trick myself but what’s the point. Who does that help? Honesty helps. Feeling helps.
He wanted to know if autism would go away. And how his brother got it. He wanted to know why he didn’t talk. And so on. The questions would come in those sleepy moments before falling asleep and once when he realized that his brother was different than his friend’s older brother.
I spend a lot of time thinking about the things you cannot tell me.There are little things. Like why you point to certain clouds or put your ear up to the wind and laugh.There are big things too. Like why you hit your head in frustration. Does it hurt? Do you hear something I cannot?
One of the hardest lessons I’ve learned as a mom to a child with autism is how to be comfortable in uncomfortablesituations. And how to laugh. And be okay with the stares. And be a shield for my boy.
The kind of autism that doesn’t fit neatly into their programs or their budgets.There is one school that might be a decent fit (at least compared to the others), but they have a waitlist for her grade.So for now, it’s me. And her. Again.
She had a kind look on her face and asked me if Zachary was my son and if he had autism. I answered yes and told her a little about him. She got teary-eyed and said she had noticed us in the waiting room
Lately, my autistic daughter, Kya, has had a growth of independence, and if I’m being honest, I wasn’t ready for it. Not even close. But it’s something remarkable to witness. It catches me off guard in the most ordinary moments, the ones that don’t seem like much to anyone else, but to me, they're everything.
I convinced myself, throwing myself into other forms of communication. But late at night, or at a park or a pool, I’d find myself almost begging for the longing to go away. Hating the sting I felt in my stomach when I heard another child singing a song or telling a never ending story.
I’ve learned something over the years that no one really talks about: being a caregiver makes friendship complicated. It’s not that you don’t want to be a good friend. You do. But most days, you’re just trying to survive.
I will always have a child who relies on me, and this isn’t a statement of despair—it's a simple reality.I’ve accepted this truth. But what I still grapple with is the lack of acceptance from the rest of society. A mass majority turn a blind eye.
I read that quote today. I saw it on Kate Hudson’s Instagram. When I read it I was actually hiding in the bathroom. It’s been a long couple of days and an even longer couple of months. A new book. Travel. A retreat for 260 amazing mamas.
Autism Awareness Month has come to an end. I, however, am aware of autism every day, every week, every month of the year. It rustles up a lot of opinions, especially this year. Everyone who has autism in their life, and especially those who have a child diagnosed, has the right to their own thoughts, feelings, and beliefs. These thoughts will change over time and certainly change with your child. For some of us, the prognosis is dire. It’s not your child may be a little quirky, or have some…
Everyone’s accepting of autism until you see my boy on the floor, mid-meltdown, and blame my parenting. The whispers and the stares as you walked past were not unnoticed, but my child needed me more than you needed my reaction.Everyone’s accepting of autism until his stimming doesn’t quite fit in your little box and you feel like he’s too old to behave that way.
Autism is in the news right now. And I keep thinking… There has to be an in-between space right now. If you are anything like me, this polar extremism makes me want to hide. And stay silent. I’m scared to comment. I’m scared to share. Like it’s a minefield and I don’t want to misstep. My son Cooper is 14 years old. Eleven years ago, we heard the words… Severe Nonverbal Autism. Boy, it about broke me. And yes, for anyone wondering, we knew it was coming. He had no…
Individuals with severe/profound autism and their caregivers/families are so often left out of the conversation and robbed of a seat at the table. We are isolated and forgotten, even though 27% of individuals with ASD are severe/profound.The Authentic Awareness Assembly event, put on by the National Council on Severe Autism (NCSA), gave families like ours a platform to advocate directly to legislators.
Every April, Autism Acceptance Month rolls around, and with it, I find myself hoping—hoping that this year, maybe things will be different. That maybe, just maybe, people will take a moment to listen, to learn, to be kind. That maybe we can combine awareness and genuine acceptance.
They were seeing autism. They were seeing our son. I’m sure most of them had questions, but no one asked.I forget sometimes. I forget that our world is so colorful and loud and intense and joyful because it’s the only world that I know.
Why you may ask?Because it was the first thing in my life that I couldn’t necessarily make better or easier or even change.See, I am a fixer. And I am a hard worker. Two traits that I pride myself on.
When we are out in public, I don’t worry about how my autistic son will act.I don’t worry about his mannerisms. Or his uniqueness.Because I know exactly who he is and how he is going to behave. And that he is learning and growing.
My youngest daughter is 16 years old and a sophomore in high school. She is autistic and is also diagnosed with sensory processing disorder and anxiety.I keep getting all the exciting emails from my daughter's high school that it's "time for":
He grew up autism adjacent. A boy born into advocacy.He knows no other life. But he is also a little boy. Who still wonders and worries. He gets angry sometimes. And he cries too. And there are so many parts that he doesn’t understand.
No one ever talks about autistic children growing up.In fact, when I used to worry and wonder about it, I would be almost scolded. Told to take it day by day, hour by hour.If I could do it over again, the beginning of our autism diagnosis, I wish I could have seen a glimpse of my boy.
They don’t meet milestones on time. They don’t follow the norm. They don’t do what every other kid is seemingly doing.My son Cooper is that way.Some people call him a free spirit. Some call him stubborn, even challenging. Autistic, disabled, special needs…all words thrown in. It’s hard sometimes. I won’t lie about that.
Everything was hard. Getting both kids dressed, getting in the car, getting out of the car safely. I was constantly on edge, trying to keep my son regulated while also pushing him—gently—to experience new things and just the regular things. I had to strike this impossible balance of not overwhelming him but also not shielding him too much.
I used to think the end game was speech. That was the goal and the dream for my nonverbal son.Words. Never ending questions. Conversations about trains and trucks.Of course I thought that.
My sweet boy,We just got back from a car ride. We do that sometimes. You and me. We used to ride around to help you calm down. A much needed break for both of us to reset.
Until you have had to hold your child’s hands to stop them from hurting themselves, your heart breaking, wishing you could take that pain away.Until you have watched your child go from five safe foods to two and prayed every night that it doesn’t go down to zero.
A letter to my little brother… Hey brother, I’m hoping that someday I can say this all to you. But there is a chance that I might never be able to…I’m hoping that when you are older you will read this and understand. I know my autism confuses you sometimes. I’m so loud. I flap my arms. I don’t notice toys. Or play sports. Or like to leave our house. I don’t play like you. I have never ridden a bike like you, and I don’t care at all about…
Nonverbal autism was one thing when he was 2 and 3. Now he's as tall as me and wears bigger shoes than I do. It's different now.The world isn't as kind. The stakes feel a bit higher. The pressure a bit heavier.I am raising a man now.