“Take my hand, we’re gonna go, where, we, can, shine!” Music has always been a way for me to heal. I don’t play, I don’t sing…I listen. There have been times in my life I feel as though I am being punished. Being punished…but for what? I am not quite sure? A dark cloud forms and rains down…. but why? I have racked my brain. I have asked tough questions. I have dug deep, deeper then I know others are even capable of going. I have blamed others. I have…
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Comedy star Amy Schumer is opening up about why she revealed her husband’s autism on her new Netflix special, saying the couple hopes this encourages people concerned about stigma to seek diagnosis. She said, “There are a lot of people with autism who go undiagnosed when I think their life could be better if they got those tools.” First, I think it’s amazing when autism makes the national news. And I don’t mean just CNN. I mean mainstream media. This story is all over the news and social media. I’ve…
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“He’s 6 years old, he should be able to walk the block without complaining or flopping.” “Trick-or-treating should be fun, not stressful.” “We should be able to walk through Target together and not have to put him in a too-small cart so he doesn’t get away from us” “Field trips should be such a fun day away from school….” These thoughts either go through my mind or they cross my lips far too often. Combine our lack of child rearing experience (prior to E), our expectations, our own childhood experiences,…
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You’re destroying him. You need to look at it from an outsider prospective!” Two weeks ago, Hudson’s entire therapy team was out for a collective group session. This included his TSS, his behavioral consultant, and their supervisor. We often enjoy these meetings because although it seems like extra people in our home, it is great for brainstorming and collaboration. Our therapy team is fantastic! They go above and beyond to meet our schedule and to meet Hudson exactly where he is at for the day. Even though they are primarily…
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I’ve never claimed to be an expert in child development. Or autism. Or anything related to it actually. But I do know my son. I know his quirks. His triggers. His joys and his fears. I know just where to tickle him to get the best laugh. And that if he sees exposed flesh, on a stranger or not, he will blow a raspberry on it. I know that he likes to sleep with five blankets, photos, mail, books and magazines. And that he won’t go to bed without his…
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Caleb and Ben, my sweet little boys, you both mean the world to me. You’ll never even know. You wake up each day with big smiley grins. Those smiles melt my heart, and I live for them. You both have fragile x syndrome; there’s no denying it runs our household. And although it’s been quite far our biggest challenge, it’s shown me the most amazing abilities you both hold within. When some say they’ve worked hard for everything in their life, they have no idea. You two have and will…
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I remember attending a speech therapy play session at the start of our autism journey. My son Freddie was 3 years old. He’d officially been diagnosed just over 6 months previous to this. I was excited and nervous. The autism world was all still fairly new. I didn’t really understand what or how severe autism was going to affect Freddie. I’d never heard of low functioning autism, and googling severe autism left me feeling hopeless. I reminded myself that Freddie was still so young. I was in denial. I thought…
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I’ve been feeling a lot lately like I need to get my words out, get my feelings out. It tends to happen when my husband is away at work, which is something that doesn’t happen often these days. We have gotten very used to him being here similar to how “normal” families operate. But when he is not here, I find that my weeks are filled with kids, work, and minimal adult conversations. And let’s face it, sometimes he does not want to listen to me babble! There is something…
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I was looking through pictures on my phone the other day and came across a picture that caused me to pause. The special picture is of Brian with his cute cousins Lilly and Leah. Brian, Lilly and Leah were born within the same year of each other. They live in the same community, attend the same schools and share the same last name. Life’s big moments I remember thinking how fun this could be as the kids grew older. I envisioned them having mutual friends, attending the same gatherings and…
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I get to see and hear the world through his eyes. We dance to our reflections in windows. We twirl to music. We lay on the ground just to feel the carpet on our cheeks. We laugh at a sneeze or a hiccup. Over and over again. We make funny noises. We run. We roll. We don’t care what anyone thinks. We laugh. Only his laugh is way better than mine. It’s the best noise I have ever heard. Deep from the belly. We eat cupcakes. But only the frosting.…
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