There is an Exhaustion in Forever

It’s 12:49 pm here. I just crawled into his bed and wrapped my arms tightly around him as he sleeps. A much needed nap. I feel his deep breaths go in and out against my chest. His course hair tickling my chin. The smell of syrup still on his cheeks, now covered in salt from crying. The smell of sweat. He is drenched. I let my breath out. The one I’ve been holding for over an hour now. We are home. Everyone is safe. We survived. On this beautiful Saturday…

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When Babies Don’t Sleep

My name is Kate and my beautiful baby doesn’t sleep through the night and there is nothing wrong with him. I feel a relief just saying that out loud! There is this weird stigma around babies who sleep. Or don’t sleep. Like some moms get good babies and some get bad babies. Or babies who don’t sleep through the night have something wrong with them. Or the parents are doing something wrong because their baby wakes up to eat or snuggle or have a dance party at 3 am. It’s…

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My Son, You Have Always Been You

My son I have a confession to make. Back when you were little, I used to dream about a you without autism. I was lost, and sad. Worried and confused. And I thought that there was a you, deep inside, that didn’t have autism. I would search for him. I would think, once I find that you, this will be all better. I just have to try harder. I was going to do everything in my power to get to that you. The you who talked. Who played. Who made…

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Not the Life I Pictured

Some kids go to hockey practice and baseball games. Or theater or an art show. Play dates and birthday parties. That’s what a parent imagines. Cooper and I used to have nothing like that. No outings. No games. Oh how I longed for something. Anything. A place that we could go to together. Now we go to speech together. We go to grocery stores and Target too. We visit places in our community. We visit parking lots just to learn about cars and strangers and practice waving. We always seem to…

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I Saw You Judge Us

I saw you. We got in line behind you at one of the snack stands. You had three kids and another adult with you. Your kids were calm. Patient. Quiet. Speaking politely. I saw you. I saw the look on your face change from smiles to annoyance as my three year old began to get very active…trying to run. I saw you. I saw you roll your eyes as his meltdown started. I saw the nasty look you shot our way before muttering something to your companion. I saw the…

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I Wonder About the End

I wonder about the end. The end of autism. And I don’t like that thing (of me) that creeps up through the night as I think. Staring into that corner by the closet where it sits. No matter how I try the thought it crawls on me. “When are you going to stop hiding? To stop running from me?” It whispers. “You know the truth: that Autism will only ever end when you accept it. When you invite it in.” At the beginning I’d always end up in front of…

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I had Plans for us Kid

I had plans as a mother. Big plans. Plans that I can admit didn’t include autism. Even today, after 8 years, sometimes I still find myself wondering how my plans got so derailed. How we got here. I’ll be giving my son a bath, washing his feet, and I’ll look up at him eating bubbles, throwing his head back, smiling, squealing, and I’ll wonder how this happened. Or he’ll be having a meltdown, self injuring, and screaming over turning left, a walk to the park or a crinkle in his…

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A Letter to my Autistic Husband

Dear David, I’m writing this letter to you in a public forum for two reasons. First, I want to shout from the rooftops just how amazing, wonderful, loving, kind and funny a husband I have.  Second, because some people have a very narrow view of what autism is, and I’d like to correct a few misconceptions. You came into my life 18 years ago and immediately won my heart by making me laugh so hard I nearly fell out of my chair!  I knew you were different from the first…

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It Isn’t Really Something to Fix

Kids are complicated. And everyone has an opinion. I mean every kind hearted, well-intentioned family member, friend, nurse, doctor, therapist and sometimes stranger has an opinion on your child. Some of them are good opinions, some misguided, and a few of them probably make you want to throw something at them.  Doctors. Therapists. Visits and appointments. Scheduling and shuffling. Integrating multiple therapeutic strategies into your home on a daily basis, all while balancing all the normal day to day things. Parents and teachers of special needs, I know you get…

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When It’s Time to Get Healthy

All my life I’ve been in relatively good shape. My weight would fluctuate ten pounds or so but always manageable. A low calorie and exercise worked for me. Even after my first two babies were born. But everything seemed to change after the birth of my third baby. I am 36, tired and I know I need to lose weight. But part of me is too exhausted to care. I can’t seem to find any energy. Three boys, severe autism, stress, and not sleeping through the night is working against…

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