I know how you feel. I feel it too. It can be exhausting caring for your child with special needs. Every mom feels worn down, but this “tired” feeling you and I feel is much greater. This word “tired” for us means way more than the lack of sleep. Every minute of every day there is worry. Worry that your child’s school might call you again. We worry about when the next meltdown will occur and what set it off. We worry about how our child is feeling because they…
Before my daughter was diagnosed the world of special needs was unknown to me. When I dreamed of motherhood being a special needs parent never crossed my mind. Suddenly I joined a club I never thought I would be a part of. Special needs terrified me. Just those two words sent chills down my spine. It was a world I knew nothing about. And then a picture will come across my memories newsfeed and it suddenly pulls me back to the days prior to being a special needs parent. I…
I wish I could feel things the way you do, my sweet boy. I want to understand. I didn’t know sound could physically, deeply hurt until you showed me. I see you fold your precious ears in on themselves, an attempt to mute the overwhelming world. That doesn’t usually work though. So, you quietly, nervously, moan. This slowly grows in intensity and frequency until your shrieking blocks out the unwanted sound or it’s removed. Whichever comes first. I want to explain to others how you feel inside during these moments.…
Mama, what is a family? A family? Well, my child A family is at once The easiest And the hardest Thing to build Think of it as a garden Maybe you expected rows and rows of neat tulips Standing straight and tall in their church pews Eating organic apples and placing the cores neatly in the trash can Instead, you have a field full of wildflowers Colorful, shrieking wildflowers Who eat your leftovers with their fingers And leave gum wrappers all over the house It was not supposed to be…
I look into his blue eyes and tried to find some common sense, some meaning in them. Some hidden reason why he was hitting his head with his hands, over and over. Some deep psychology as to why he was screaming. Some reason why, why did he do this. But instead I find silence. There is no panic in this boy’s eyes. No desperate urges. No curiosity. No hint that he is conscious and knows what is going on. At all. Many people say to me, after finding out about…
Imagine not being being able to tell someone what’s on your mind. Imagine not being able to tell someone if you’re having a hard day. Imagine not being able to tell someone that your tummy hurts. Imagine not being able to tell someone that you’re upset. Imagine not being able to tell someone that you’re feeling down and why. Imagine not being able to tell someone why you can’t sleep. Imagine not being able to tell someone that you’re happy. Imagine not being able to communicate. Imagine being a mother…
January 16, 2017 It’s been 4 years since my son Stalen was diagnosed on the autism spectrum. He was 21 months old. I remember he was wild in the room as we waited for the doctor to come in and speak with us. He was throwing toys and picking crumbs from the carpet. He was pulling single plastic gloves from a box hanging on the wall. I was trying to hold myself together with strict composure but could feel the lump in my throat and the anxiety deep in the…
One of the questions I am most commonly asked about as Cooper’s mom is about tummy troubles. Did he have them when he was younger? Does he now? The answer was yes. And now thankfully, no. Many children have constipation. Children with autism might have more problems with constipation than other children. And difficulty with things like sitting on the toilet and eating different foods can make treating constipation challenging. Our son was no stranger to this. Since he was unable to communicate pain or discomfort, it took us some…
I never gave much thought to social norms before I had my son Cooper. Although I do remember a college professor speaking about them and advising each of us to stand backwards in an elevator and watch people squirm. Besides that though, I guess I have just always done them so they rarely cross my mind. That is until autism. My sweet boy is 10. He has blonde hair that is coarse like straw and ruddy cheeks, and he is entirely himself in every way. He doesn’t know how to…
There is 8 years between these two. 10 and 2. The little brother and the big brother. I know the facts. The little ones spoken language passed up Cooper’s months ago. He has a hundred words. He uses full sentences. When the younger one leaves home, Cooper will be 26 years old. A grown man. The baby doesn’t know what autism is. Or even that on paper his older brother is nonverbal. They have never, not once, played a game together. Not in a traditional way. And their Dad and…
