Posts Tagged ‘nonverbal autism’
Progress not Perfection
From the second our babies are born we are teaching them independence. The goal is to grow up…right? And thankfully, most skills are just learned through observation. They don’t need to be taught. Especially if you have an older sibling. They see it done a few times and before you know it your toddler is using a spoon or sitting on the toilet. With this amazing kid it was different. Skills didn’t come naturally. Anything new was resisted. There was no…’I’ll do it myself.’ No independence. At age 8 we…
Read MoreThe Right Amount of Hope
I’ve been thinking a lot about hope lately. And the right amount to have. Which is a funny thing to think about really. Because, how can one have the wrong amount of hope? My son has autism. And somehow, no matter where I am on the ‘hope for his future’ spectrum, I seem to have the wrong amount for some people. If I hope for words, I am told I should really be hoping for communication. If I hope for independent living, I am told that I’m not accepting reality.…
Read MoreEverything I Prayed For
I’ve been called negative. Depressing. Dark. I’ve been accused of not loving my child. Of being weak. Of being a bad mom. All for saying severe autism is hard. And scary at times. I’ve spoke up. Spoke out. And refused to give up. And I’m here to say it’s paying off. This kid. This amazing, funny, smart, kid. He’s thriving people. Anti-anxiety medication and an amazing ABA team have helped him more than I can even put into words. But I’ll try. Because that’s what I do. He’s so happy.…
Read MoreMy Son, You are Different
My son, you are different. Different in the most best possible way. I realized that today. You are not like the other kids. And there is absolutely nothing wrong with that. Not in anyway. You are the brave one. Because you have no fear about being exactly who you are. We were at the park. The cool one in the neighborhood. At least that’s what your brother says. We finally convinced you to walk over there. You were scared at first. We had to make some new turns. Go farther…
Read MorePraying for Communication
Yesterday, I walked into my living room on a mission. Which isn’t a rare occurrence. My hands were full. Dirty laundry. Photos. A bag of rocks. A few dozen Pokémon cards. I was in my own world. To be honest, I believe I was muttering something about how no in my house picks anything up. And then I heard… ‘M. O. M.’ It still stops me in my tracks. Cooper saying mom. Cooper saying anything. We have one word right now. After 8 long years. And it’s absolutely beautiful. Of…
Read MoreThe Forgotten Side of the Spectrum
Severe Autism… I did a brief radio interview recently explaining our version of autism. I discussed the isolation, the lack of help and support, and the lack of understanding and acceptance for severe autism. Tim Nicholls, who is the policy manager for the national autistic society, responded to my radio interview yesterday. I’ve listened to his response. I want to talk about this part that he said below… “It doesn’t need to be something that is always holding them back, with the right support, depending on their needs, children with…
Read MoreHow do I Change the World for my Son?
Lately, my son has been having some pretty huge wins. Ginormous actually. He went down his first waterslide. He laughed and flapped the whole way down. And then went five more times. He bowled. All ten frames. I had no idea he even knew what a bowling ball was! He went to an arcade for the first time. He’s never set foot in one before. He never melted down. Or bolted. He just wandered ‘closely’ by while his brother played games. It was amazing. He went to a sit-down restaurant.…
Read MoreSomewhere Along the Way it got Easier
Somewhere along the way it got easier. I can’t tell you exactly when it happened either. I sometimes try to figure out when we let the breath out that we’d been holding for so long. But I can’t pinpoint it. I remember it being hard. New baby hard. No sleep and nursing hard. And then toddler hard. And then really hard. Nonverbal autism hard. I remember trying to live our lives the way we always had. And failing. Everything was hard. And I mean everything. We couldn’t win. No matter…
Read MoreAutism Defeated Me Today
Autism you won. It was one of those days. A day you felt like a dump truck has repeatedly hit you over and over again. Tears that continue to flow. Nothing is stopping them. I am hurting. I am hurting because I can’t figure out what is making my son so frustrated. I can’t figure out what is causing his meltdowns. Autism is hard. There is no sugar coating it. It hit me extremely hard today. I just became so overwhelmed with emotions today. The feeling of my anxiety taking…
Read MoreThe Questions I Would Ask You
Sometimes, I let myself dream about you talking Cooper. I’ll be honest, it’s less and less lately. And not for sad reasons. Don’t think that for a second. But because you are communicating so well with your speech device. That’s our focus. As long as you can tell us if you are thirsty, or hungry, or if something hurts, then I am good. I care about your needs sweet boy. I need those met. I need to know that you lack for nothing. And I need you happy. Above all.…
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