The Waiting Game

Caption this photo! We stayed in a cabin for a few days and the boys were absolutely fascinated and intrigued by this contraption. Also, the real reason I’m sharing this photo is to brag on this kid. Waiting is one of the most fundamentally important skills we learn as we age. Waiting is a skill that has never come naturally to Coops. Sitting. Standing still. All so important. For us, from the day Cooper could walk, he was running. He ran into streets. He ran out doors. He ran towards…

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Spring Break in Minnesota

People who follow me make a lot of assumptions about our family and these boys. It’s interesting, funny, even upsetting to read them. People assume that Cooper, and ultimately autism, is a hardship. People assume the younger two are neglected because they see Cooper get attention in a 4 minute video. I could go on and on. We are on a spring break two night vacation. Because flying isn’t an option for us we went to northern Minnesota. The day before we left it was 65 degrees. The day we…

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Autism Representation – Daniel Tiger to Introduce New Character

I can vividly remember taking my autistic son, Johnny to the park when he was four years old. As I pushed the double stroller with him and his baby sister through the park entrance my heart sank as our usually pretty empty park was full of children and parents.  Johnny was excited, and there was no turning back. I had to let him play for at least a little while. As he darted off to play I quickly strapped the baby to me and followed him like a shadow. Sometimes…

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It’s Not That I’m Not Happy For You

I need to be real for a minute. It’s not that I don’t want to be around you. It’s not that I don’t like your kids. It’s not that I don’t love watching your kids grow up from afar. It’s not that I’m not happy for you. It’s just too hard. It’s too hard to see your children developing at a normal rate. There’s no speech and language delay. There is no vocal stimming. There are no show stopping meltdowns. You have kids who have a typical path to follow.…

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Autism is Not Always to Blame

From as far back as I can remember, Skyler has always expressed himself by using his hands. The most common of his ‘gestures’ is open hand smacking of walls, cupboards, doors, counters, people, etc. Basically, if he could reach it, he would hit it. Hair pulling was his second favorite method of contact. Oddly enough, it often wasn’t done to gain the attention of the person on the receiving end of his torture, but simply because he liked the texture of the strands of hair between his fingers. What began…

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Erase The Word

There are many things that you start to realize when becoming a mother to special needs children. You learn all in the ins and outs of your child. You learn how to survive from day to day. You learn all the official terms and acronyms…..IEP, BCBA, PCA, TSS, OT, PT, self-contained, inclusion, etc. You start to realize some things that were not even thought twice about, earlier in life. I started to see really quick how the world views people in the special needs community. I see how the world…

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Bittersweet Birthdays

My son’s birthday is this week and I am planning a party for him. He will be 14 years old and we are having a Sesame Street themed party with an Oscar the Grouch cake. The party guest will be me, his dad, his younger sister, and his grandmother. That is his limit. More than four very familiar people will overwhelm him. This is what birthdays with severe autism and developmental delay look like for us. When my son was born, I had several friends who had baby boys around the…

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The World Deserves to Know Him

When we are out in public, I don’t worry about how my son will act. I don’t worry about his struggles or 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. I know he will flap his arms in pure joy. I know he will run. And sit. And maybe feel the cool of the cement with his cheek. I know he will squeal. And hum. And laugh. I know he will wave to…

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Where are the Trophies for Kids Like Him?

The first time I explained my son Jack had autism, we were at the Bronx Zoo. He was about eighteen months old.  I was pregnant. The zoo was crowded. And he took every opportunity to run away from me.  When he wasn’t running into throngs of people with their own little kids, he was trying to grab half-eaten pretzels from the garbage cans, or snatch napkins off the hotdog carts. He was terrified of the animals—all of them, the doe-eyed deer in their green valleys, the multicolored birds peering down…

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Will This be Our Forever?

My son, I’m waiting to read you your nightly story, like I do every night, like I have for years. You still play with Thomas The Train and watch childlike videos. You still need to be bathed just like a young child. I wonder if I’ll do this forever or if one day you’ll grow up. You see, you are actually all grown up physically. You’re a grown up 20-year old man but cognitively…well, that’s a different story. I know some things will change, but what I don’t know is…

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