Posts Tagged ‘severe autism’
I am One Lucky Mama
A few days ago I had an ITP meeting for Cooper at his ABA Center. We talked about behaviors, evaluations, speech, and goals. We talked about how great Cooper is doing. His overall behaviors are down but the duration is up. We talked about holds, and kicking, how his favorite thing to work for his colored paper, and how his SDQ and CASII scores have improved. We chatted about emotional problems, hyperactivity, peer problems and so on. These meetings are required for him to maintain services. They are important. They…
Read MoreMy Most Important Lesson
I know two things to be true: My son has severe, debilitating anxiety. And, it’s not his fault. I want to say that to you again. So it sinks in. And while I do, I want you to picture our family. Jamie, me, the boys. Out in the community. Sawyer playing. The baby in his stroller. And one of us holding Cooper. Or chasing Cooper. It’s clear that he is struggling. It’s clear that we aren’t enjoying ourselves. Maybe we asked him to walk to the car. Or turn right…
Read MoreI Knew it would be Hard, Just not this Hard
When my son was diagnosed with autism five years ago, I knew we were in for a challenge. And I don’t just mean the fight for services or supports, I just knew my little guy was a pistol. At that time, he didn’t sleep. At all. He was up all night and started our day around 4 am. I also knew that he hated all foods. And refused to eat almost everything. I knew he couldn’t communicate. And refused to participate. I knew everything was a fight. He refused to…
Read MoreLife is about Perspective
Life is all about perspective. And how you look at it. Having a son with severe, nonverbal autism has changed everything for me. I’m learning as I go. I’m getting stronger while giving myself grace to accept and grow. Sawyer and I just got home from the store. He spent his birthday money on a Lego set. He was so excited to go, choose (that’s half the fun!), and pay. He’s been anticipating our trip for days. He even did a few chores around the house today to earn extra…
Read MoreThe Parts No One Talks About
There are parts of autism that the world simply doesn’t talk about. The ugly parts. The scary parts. And the sad parts. No one talks about physical aggressions or self injuring. Or fecal smearing. Or even what happens to nonverbal, severe kids when they grow up. And I don’t just mean age 20. I mean age 60, long after their parents are dead. Do they go into nursing homes? Who cares for them? Instead, we hear about the beautiful parts of autism. And the dramatic ones. The newsworthy ones. You…
Read MoreA Second Child Changed So Much
We’ve lived with autism for four years, some days it feels much longer. I’ve always wanted kids, wanted what you see on TV, in magazines and what your parents teach you. A boy and a girl. A perfect family. But what is perfect? Four years ago we had our first child, a gorgeous little boy that melted our hearts with his wonderful smile and infectious laugh. However, from a very young age things never felt right. He slept for an hour at the most at any one time, refused to…
Read MoreBrother, I don’t Understand Autism
I don’t understand you Cooper. And I really don’t understand autism. Do you know that I used to think autism was an actual thing. Like an object. Mom would say you have autism. And you’d get a cookie. Or get to have your Kindle at dinner. And I’d want autism too. Only, I didn’t have it. I was the different one. Mom and dad always say that they don’t have to worry about me. I guess because I don’t have autism. And I guess because I talked. And potty trained…
Read MoreHope Bubbles Up
Four years ago I sat across from a speech therapist, whom I loved very much. She looked at me and said, ‘Kate, you need to prepare yourself for nonverbal forever. You need to acknowledge a world where Cooper doesn’t speak.’ I remember I felt like my world ended. I learned after years of self growth that she said it to me with love. She knew I needed to hear it. We just left a speech evaluation. Probably our twentieth over the years. Only this one was different than all the…
Read MoreAutism Touches Every Part of Everything
I am not sure when the moment hit because I was so deep into autism, I did not even realize the epiphany I had. When Jayden was diagnosed just before age three I had so much hope, and do not get me wrong I am still filled with tons of hope for Jayden’s future. I just had some unrealistic expectations of life like ‘The Good Doctor type of autism’ instead of the autism that has a potty timer going off every thirty to forty-five minutes, depending on the day. Somewhere…
Read MoreI’m not Always Grateful
I sat there bouncing my baby on my knee. I was surrounded by people. I watched the group of children singing Jesus Loves Me. So casually. Standing in a line. The youngest was 4. The oldest was 8. A boy. Cooper’s age. I watched him specifically. He was wearing a tie. He was standing so still. Holding the microphone. Then he sang his name. Four words. ‘My name is Ben.’ He sounded like an angel. I realized in that moment I wasn’t breathing. I had stopped bouncing my baby. I…
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