Posts

Not the Life I Pictured

September 27, 2019

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

September 27, 2019

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

September 26, 2019

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

September 26, 2019

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

September 26, 2019

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

September 25, 2019

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

September 25, 2019

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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The Doctor who said, Your Child is the Least of my Concerns

September 24, 2019

My daughter is autistic and started having seizures at age 11. I remember the day I got the call from the school nurse that she had a seizure in class. I actually expected it at some point due to her neurological issues, so it didn’t take me completely by surprise, but it was terrifying nonetheless. We already had a neurologist so we had the 24 hour EEG right away which confirmed she was having partial complex seizures. The type where you just kind of stare off into space for as little…

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Show your Kids the World

September 24, 2019

When we bought a house in a neighborhood full of kids I told my husband we are either making the biggest mistake ever…or we are going to change Cooper’s life. At the time, Cooper paid no attention to kids. He hated noise and chaos. He didn’t like a full house. Overnight Sawyer made friends. In and out they came. So many kids Cooper’s age. Older and younger. Our living room and kitchen full of little voices asking for snacks. By the end of day one we found Cooper in the…

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Special Needs Parenting Changes Us Entirely

September 23, 2019

Special needs parenting changes us entirely. There is no denying that. Because the truth is — the first few years are going to pull you so far away from who you used to be that you won’t even recognize yourself anymore. You’ll find yourself looking in a mirror, bags under your eyes, either heavier, or skinnier, and not recognize yourself. It looks and feels like you’ve aged a hundred years. Or maybe you are standing in a crowded room, feeling entirely isolated and alone, and wonder if you are invisible.…

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