Posts Tagged ‘severe autism’
I Don’t Understand Why
I’ve numbed myself now for quite some time. I went from my daughter getting a diagnosis to my son having autism too. When I realized he was on the spectrum it really hurt because I thought he would be the typical child that would help with his sister and that I would be able to relate to on a level I feared my daughter might not be able to. When he began his aggressive behaviors- this beautiful boy I love- that is when it became too much. The whole process:…
Read MoreAutistic Teen left with nowhere to live after his Grandmother Dies
If you ask any special needs parent about their greatest fear surrounding their disabled child, I promise you it will always be the same. Who will care for my child after I am gone? That thought has haunted me many times. And it’s a complicated question as well. My son will need lifelong care. He will be a man, not a small child. I don’t know where he will be cognitively. Or if he’ll be able to bathe himself. Or buckle his own seatbelt. I don’t know if he will…
Read MoreAn Open Door
What is the measure of success in development? For most it’s acing a test or moving onto the next grade level. In our world, the special needs world, it’s different. Some days it’s simply trying. Or being present. It’s touching a food to your lips or only self injuring 50 times instead of a hundred. It’s waving to people or making a sound to communicate. It’s sleeping past 3 AM or tolerating a haircut. And sometimes, it’s an open door. This door. Our home has felt like a prison for…
Read MoreUsing a Fork has Never been a Priority
This morning my son used a fork to eat his breakfast. I didn’t ask him to use a fork. Honestly, I don’t even know if I gave him a fork. He must have grabbed it off of the counter. See, he was eating waffles and sausage. And in our house, when you have a child that struggles with fine motor, waffles and sausage can be a finger food. I wasn’t motivating him to use a fork. I didn’t do hand over hand either. I didn’t remind him after every bite.…
Read MoreWe Don’t Dwell on the Hard, but we do Acknowledge it
I often think people assume that my husband and I dwell on the hard parts of autism because we choose to share them publicly. I’ve been asked if our life is sad. Or been told that I clearly need therapy. That I’m depressed and need medication. Or my favorite…that I’m negative. That one makes me giggle. A little secret for you. We don’t dwell. We aren’t sad. We don’t wallow in pity. But we do acknowledge the hard. The very real hard parts of raising a child with a lifelong…
Read MoreA Dad’s Letter to his Nonverbal Son
Dear Cooper, I remember the moment it truly hit me that your autism was forever. And not just a word. Or a thing that other people’s kids had. It wasn’t when your mom told me that something seemed off. Or when she did the checklists late at night. I remember I got so mad at her. I defended you. I listened to her say things like nonverbal and delayed and I refused to believe that was you. I couldn’t figure out why she was looking for something that simply wasn’t…
Read MoreIs he Happy Mama?
We were driving home from the birthday party. I glanced in my rearview mirror at Sawyer. He was red cheeked with messy hair. I saw leftover pizza and frosting on his face. He was clutching his giftbag. And I was hoping there wasn’t a whistle inside. I hate whistles. He was talking to his baby brother who was in the carseat next to him. ‘Did you see me jump buddy? I almost touched the sky! You saw me climb the rocks. I was scared though. I don’t like to be…
Read MoreLetting him Experience Life without Me
This one. This one right here. He was the little for almost six years. Now he’s the middle. In a way he’s always been the oldest. He knows that. I know that. It used to be unspoken about. Until one day he asked me. He said, ‘I’m the older brother, aren’t I mom?’ I smiled. I cried. I hugged him. He knew. He loves fishing, riding bike, playing baseball and hockey. He loves being away from home. Being gone. Doing stuff. Socializing. He has no time for movies or iPads.…
Read MoreWhat’s Best for Jack? A Silent Graduation.
When Jack Higgins’ high school graduation approached, his parents, Barbara and Patrick Higgins, wanted him to attend. Like my son Cooper, Jack, 21, has severe autism. His parents worried that he’d struggle at a loud, crowded event. But, the Higgins dreamed of seeing their son walk across the stage and receive his high school diploma. I have this same exact dream. And while my son is only 8, in many ways I’ve accepted the possibility it may never happen. “When you have a severe disability, like Jack does, you miss…
Read MoreYou Must Love Him Differently
‘You must love him differently,’ she said. I looked at her curiously when she said that. ‘Why?’ I asked. ‘Because he needs you so much more than the other two. Because of the autism.’ I didn’t know what to say at first. She went there. Without fear. Without hesitation. I smiled and said, ‘I love him because he’s mine. I don’t love him any more or less or any different than his brothers. Autism has never changed a thing with my love for him.’ I love him because he made…
Read More