I’ve envisioned this moment many times over the years. What it would feel like to experience the high school graduation of my youngest child, Kendall, having not had the opportunity to enjoy this same moment with her older brother, Skyler two years earlier. Would I be overly emotional at the ceremony? Proud and elated for Kendall but at the same time sad knowing that Skyler will never walk across a stage to receive his diploma. I thought maybe I should hold back a little of my outward expressions of excitement…
My son Cooper is 12 years old. He said his first word at age 8. It was mom. Only he said it slowly, each letter drawn out as if he was plucking them down from the sky. M. AW. M. It was the most beautiful word I had ever heard. Today he has 20 or so words. Mom. Dad. Cooper. Sawyer. Harbor. Sister. Help. More. Eat. Juice. Water. Milk. Chicken. He doesn’t say them unprompted very often. And when he does say them most people can’t understand them. But that’s…
‘I feel like a fraud.’ That’s how I started my presentation to a wonderful group of teachers and staff today. ‘I feel like a fraud because I have no idea where my son fits into the world of education. And I’m scared to say it might be nowhere.’ My name is Kate and I have four children. They are 12, 10, 4, and 2. My oldest has a diagnosis of severe, nonverbal, level 3 autism. His name is Cooper. Nothing with him is typical. It’s always been a battle to…
Although it’s now changed when I first started my blog, I named it “Johnny’s Spirit” after my son’s nickname. While Johnny is his nickname, I want to explain the “spirit” part. As a parent of an autistic child, one of my biggest concerns is protecting my son’s spirit. His being, his essence, the part of him that you can’t describe but only feel. It’s what makes him who he is. The world we live in was not built for him. People may try to push him into a mold that…
My son went out in his pajamas today. It was 3pm in the afternoon. It wasn’t because I’m a bad mum. It wasn’t because I am a lazy git. It wasn’t because I don’t care. In fact it was the total opposite. My son refused to leave the house. I held out four pairs of shorts and a selection of t-shirts – each one was rejected! It was not because he is a bad kid, and it is not because I don’t know how to discipline my son. It is…
Today I want to talk about inclusion and what it really means. Inclusion is not just about being allowed into the building, there’s no point being given the key to a door if you don’t know how to turn it. Inclusion will look different for everyone, it’s not a one size fits all approach. Every single person has different needs, things that make their life “work”. With Charlie it’s a lot of things, it’s complicated and you need to want to understand. It’s not about mere supervision, it’s about understanding.…
That dark place… I wasn’t even going to write this because it hurts too much, but I feel I should. Reading and hearing all these stories about adults with learning difficulties being hurt, abused, neglected, and killed, it’s too much. I don’t share everything I read because if I’m honest, I find it too hard to face. You see, my mind has a dark place in it, and I go there when fear for my perfect boy kicks in. It doesn’t happen when we’re having a bad day when he…
My son, Today is the first day of summer vacation for you. You are 10 and yesterday was your last day of fourth grade. On the walk to the car after your day, not one minute into summer, you said, I’m a fifth grader now. You have always wanted to be older. Bigger. Faster. You have never had time for little kid stuff. I’ve noticed as we’ve entered these in-between years, parenting is getting a bit more confusing. I find myself questioning myself a lot. Wondering if I’m going the…
Last night I was just a mom. That reads funny, I know. I mean, I have four kids. I’m always ‘just’ a mom. I pack lunches and wash blankets. I kiss owies and scrub grass stains out of baseball pants. I give baths and hold hands and know all the passwords and how to fix the wifi when it stops working. With my oldest, Cooper, it’s a bit different. At age three he was diagnosed with severe nonverbal autism. And well, the game changed a bit. Suddenly I became more…
Two years ago we were in the fight of our life. I remember sobbing on the floor of our playroom because I understood for the first time in Jackson’s life how it was safer for some children to live away from home. I was terrified. Heartbroken. And scared to death we would never make it through as a family of four. And two years later we are finally letting out the huge breath we’ve been holding for two years. We can finally breathe again. I am sharing the truth with…
