A Thank You Letter to My Kids, the “Typical” Siblings I know having a sibling with special needs has not been easy on any of you. Autism is like a kaleidoscope. While it certainly brings a lot of color to our life, each piece is different from the rest. Every twist gives a different view, and the effect is different for everyone. Autism has not only altered your sister’s life but the lives of all of us who love her and walk beside her. It is overlooked how much the…
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My son Cooper has always reached for a hand to hold when we are in the community. But not just any hand. Typically only mom or dad. He likes the comfort of us walking alongside him. Usually we lead. Or we walk side-by-side. And as he’s gotten older, he’s even started to lead more. But he’s always only an arms length away. We are his safe spot. His translator. His buffer. His armor. We help him decipher. We explain. We protect. We walk. We often refer to him as a…
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‘Dad! Is everything alright?’ That’s what I said when ‘Dad Cell’ flashed on my phone. I half expected it to be someone else. A relative. A nurse. Someone telling me something happened. My stomach felt sick as I waited the few seconds for a voice to respond. ‘Katie. Did you catch the game today?’ I gasped. See my dad hasn’t called me in a really long time. He used to call me weekly and then he had a stroke and it changed him. It changed the way he walks and…
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This morning I was running around getting four kids ready to leave the house, even earlier than usual. We had a sensory friendly showing of Moana 2 to attend. Cooper was the most excited. He’s been counting down the days for weeks. See his two best friends we’re going too. Up and dressed and ready to go and saying…’DDD-EEE-X-TER’ every time I walked by. It was a bit chaotic to say the least. Packing a bag, a special snack and drink for Cooper, headphones, hats, coats, and gloves (it’s 4…
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Hope. Gosh I hear that word a lot. Have hope. Never give up hope. All we can do is hope. If we give up hope, than what do we have left. In the world of autism, hope is a hot topic. Because for some reason, people question if I’m hoping for the right things. Hope and I have had a rocky relationship over the last few years. For years I hoped nothing was wrong with my baby. Then I hoped my toddler would catch up. And then I hoped that…
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Progress over Perfection.That’s a phrase I think about a lot. In the most challenging years of our son’s life, post autism diagnosis, it felt like we were frozen in time.Or moving backwards even. But never forward.Our son was in pain, but we didn’t know why or what. He didn’t sleep or communicate. He hurt himself and us. He rarely smiled.For years it seemed like he wasn’t made for this big, confusing world. And to top it off, the world didn’t seem to want him either.But we didn’t give up on…
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To my son’s future caregiver… My son is 14 years old. When he was three he was diagnosed with severe nonverbal autism. We had no idea what the future held. And honestly, we weren’t told much good. When he was 8, I made the decision to walk away from the negativity. The sad predictions. And the people who didn’t believe in him. Or see his strengths. It was the best decision I’ve ever made. His favorite thing to do is to decorate for Christmas. He will help for a bit.…
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What keeps you up at night? That was the question asked during a presentation I was giving to the amazing folks who work with children and adults like my son. I fumbled a bit through my answer because I don’t like to speak of those things. I said keeping my son safe from the dangers of the world. As he gets older, bigger and bolder, I find it more worrisome. And who will care for him after I’m gone. Or if something happened to me and my husband now. I…
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Every year at Christmastime, my older two children either went to see Santa, or we talked all about Santa and wrote lists. I could see the excitement building inside them and the anticipation on their faces on Christmas Eve as they got ready for bed. They would wake up on Christmas morning and run into the living room, yelling out, “Santa came!” and dive into their gifts. Olivia, on the other hand, was nonspeaking, and although I still tried to tell her about Santa and presents, she seemed to have…
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Our elf on the shelf experience encapsulates a lot about my son Jesse’s journey with autism. When her was around four, my sister bought Jesse a boy Elf on the Shelf. She’d gotten one for my nephew and wanted to spread the magic to our family too. I wasn’t a big fan. I’ve always been of the snitches get stitches mindset when it comes to these little overpriced spies. But it was a thoughtful gesture, so I went along with it. It’s funny how the typical things you never even…
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