We’re not supposed to complain. Special needs families, that is. The world calls you an ableist when you lament an ability or lack thereof. I’ve never felt this child of mine was lacking. He’s nothing short of amazing. How could someone so funny and clever and filled with light be anything besides perfection? But, boy, is he hard. Nearly seven years of eternal toddlerhood and a few words repeat themselves on the many pages of his complicated history. Developmental delay, genetic disorder, autism, anxiety, adhd. These are the tricky pieces…
Hello! My name is Eileen and I blog over at Autism with a Side of Fries. This is my 16 year old autistic son. He still very much likes to Trick Or Treat. He plans on once again being a Hot Dog for Halloween. (With the addition of a mask, of course.) Locals know to expect this Hot Dog (Three years running! We’re really getting our money’s worth from this costume.) to come flappy happy up the driveway. There is no age limit on enjoying a holiday. There is no age…
You must be sad… I’ve heard that phrase a few times over the past couple weeks. You must be sad your son rides the shorter bus… You must be sad he’s not in the gen ed room at school… And the zinger, the one I felt like a shot was fired and received, you must be sad you will never have a normal life… These statements, they don’t necessarily come from a place of hate or anger. They come from a place of misunderstanding. They simply don’t understand. I am…
Sawyer, I am writing down the stories of you so that someday, when you are older, we can look back together at them.———Sawyer, your brother Cooper started at your school last week. At first I didn’t know what you would think. Would you be nervous? Excited? Worried? Of course, you amazed me. Your response when I told you was….’now I can watch out for my brother, mama.’ You were so excited. I was a bit worried though. I want you to be a kid and not have to worry about…
Happy Sunday from this kid. We’ve had an interesting day. He asked me for a train guide from 2007. I told him I’d do my best but reminded him that he was most likely setting me up for failure. He asks me for the most obscure things. He had faith in me though. I know because he asked me well over 100 times. He also asked me to go shopping. And for Amazon. And paper. And Target. When the Amazon van drove by I knew we were in trouble. I…
Someone once said to me…’siblings to children with disabilities are not special. And they shouldn’t be treated as such.’ I’ll tell you this…in all my years of sharing on social media, very few statements have bothered me as much as that one. I adamantly disagree. This kid. His life is different. Not bad by any means. Wonderful if you ask me. But it’s different than most of his peers. He sees and hears and experiences things most people never will. And we choose to call that a blessing. We work…
I think a lot about the things that make this kid happy. And bring him joy. Because for a lot of years, the list was pretty small. It’s gotten bigger though, thankfully. If I was to build a world for him, one that was entirely for him…what would it look like? Well, it would be full of color. Bright reds and blues and yellows. Our clothes would all be bright too. Our houses and the objects inside as well. Music would always be playing. Happy, fun, LOUD music. We would…
Today our family went for a boat ride. When we finally docked after being on the water for a few hours, a sweet older gentleman walked by, saw our three adorable kids and said…’looks like you had a great time?!’ Jamie and I both looked at him and said unanimously…’oh no! It was awful.’ But we said it with a smile and a laugh and the man couldn’t help but laugh with us. See, it was 57 degrees, windy, cloudy and cold. I had thought it would be a beautiful…
I believe in honesty, transparency, and reality. So, I would be lying if I said I wasn’t scared about providing lifelong care to my son. And there are times when that fear can consume me. It will eat me up at 3 am if I let it. But I’m working on it. I’m working on managing my fears and worries. And I’m working even harder on teaching my son all that I can to help him achieve his greatest level of independence. I push. I pull. I teach. I hope.…
To the mama whose baby isn’t starting school today. To the parent who is wondering if they should take the picture. And wondering if they should celebrate just another day. To the dad whose sending some kids back to school but not the others. To the parent feeling a twinge of sadness today. Or a lot. I understand Your child doesn’t go to a typical school. They go to therapy. There are no grade levels. Just continuous time. Or maybe they do but they aren’t really in a grade. On…
