Recently I found myself in that that spring cleaning mode—the place where I wanted to purge, and organize, and simplify all the things. But as I took a step back to take inventory of our lives I was quickly overwhelmed by what I found. There were so many things that had been left un-done for so long. As I thought about why, the reality of our life came flooding in around me. It all comes down to survival mode. When you come home from the hospital with a newborn in…
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A first child turning 18 is an exciting time in a parent’s life, right? A time when the child you grew within you reaches the age of legal adulthood. It seems like those 18 years went by in a blink of an eye. A child you raised, guided, and encouraged throughout their childhood actually turned out pretty darn awesome. Your role in their life is different now. The little birdie is getting ready to leave the nest. They are preparing to go out on their own and conquer the world.…
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If you ask any special needs parent about their greatest fear surrounding their disabled child, I promise you it will always be the same. Who will care for my child after I am gone? That thought has haunted me many times. And it’s a complicated question as well. My son will need lifelong care. He will be a man, not a small child. I don’t know where he will be cognitively. Or if he’ll be able to bathe himself. Or buckle his own seatbelt. I don’t know if he will…
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What is the measure of success in development? For most it’s acing a test or moving onto the next grade level. In our world, the special needs world, it’s different. Some days it’s simply trying. Or being present. It’s touching a food to your lips or only self injuring 50 times instead of a hundred. It’s waving to people or making a sound to communicate. It’s sleeping past 3 AM or tolerating a haircut. And sometimes, it’s an open door. This door. Our home has felt like a prison for…
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This morning my son used a fork to eat his breakfast. I didn’t ask him to use a fork. Honestly, I don’t even know if I gave him a fork. He must have grabbed it off of the counter. See, he was eating waffles and sausage. And in our house, when you have a child that struggles with fine motor, waffles and sausage can be a finger food. I wasn’t motivating him to use a fork. I didn’t do hand over hand either. I didn’t remind him after every bite.…
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When I received a private message today from a sweet autism mama, my heart sank. She was leaving her support group because of drama between her and some moms in the group who had been her best friends. I knew this decision didn’t come lightly. I knew her eyes were bloodshot from nights wasted worrying about the right thing to do, wondering how this situation got so far out of control, and feeling betrayed by the very people who were her lifelines for so many years in early autism. Her…
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I’m the mom without a bestfriend. I’m the mom without a tribe. I’m the mom without a village. I’m the mom who doesn’t get invited to birthdays, baby showers, weddings, mom’s night out. I’m the mom that doesn’t have a person. I’m the mom who spends weeks at a time never seeing another human being besides her kids and husband. I’m the mom that doesn’t get included. I’m the mom that doesn’t have someone to make sure I’m still hanging on. I’m the mom on the outside looking in. I’m…
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A few years ago I decided to start a Facebook page for my blog, Finding Cooper’s Voice. I started it so I could have a place to share all of my autism related posts, and not overwhelm my friends. In less than two years, I have nearly 500,000 followers. It’s amazing. Some days I’m still surprised by the amazing response. I’ve built a community that I am proud of and love. But, with hope and support comes negativity and bullying. I guess that is the nature of social media. So,…
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I often think people assume that my husband and I dwell on the hard parts of autism because we choose to share them publicly. I’ve been asked if our life is sad. Or been told that I clearly need therapy. That I’m depressed and need medication. Or my favorite…that I’m negative. That one makes me giggle. A little secret for you. We don’t dwell. We aren’t sad. We don’t wallow in pity. But we do acknowledge the hard. The very real hard parts of raising a child with a lifelong…
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You. What would I do without you? The father of my children who goes the extra mile. We have an extra mile child. He has extra needs. We are learning together. Learning how to best parent our sweet boy. Together. We have our bumpy times walking this extra mile. We may not agree, we may not yet understand, we both are sleep deprived. We keep going. When our son was diagnosed I know how hard it was for you. You were in Afghanistan when I was on the phone telling…
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