Mom, Dad, You have not Failed

I had the honor of meeting with a doctor today. A very important doctor. I was telling him all about my Cooper. What we’ve been through. I started at the beginning. He didn’t sleep. Not ever. Everyone told me it would get better. They said I was exaggerating. Only I knew I wasn’t. I told him it took Cooper six years to sleep through the night. And even today, it’s still a struggle. I told him about the burst ear drums. One after another. How no doctor would get close…

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Dare to Believe Mom and Dad

When my son was five years old, we had no good days. We had bad days and okay days. I am scared to admit that because I know someone reading this will judge me. They will say I am a bad mom. Or say I am weak for admitting that. But, if our story helps one person, gives one mom or dad hope, than it’s worth it. When my son was five, he was unable to communicate. He couldn’t tell us if he was in pain, or if his socks…

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A Magical World

I often say we live in a magical world. My son and I. A world where we communicate with our hearts instead of our mouths. A world full of color and trains. Sometimes it’s upside down, backwards, even inside out in our world. Some days we move forward. Some days we stand still. We celebrate the craziest, oddest things. Things that everyone else takes for granted. Some days I swear we are the lucky ones. Some days I pray for it to get easier. I pray for simple. I pray…

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We won’t be Silenced

Severe autism, level 3 was my son’s first diagnosis. But I’m not supposed to talk about it.  Severe learning/intellectual disability was my son’s second diagnosis, I’m allowed to talk about this one.  Most children with this level of autism have very complex issues and learning disabilities. You can talk freely about most disabilities and special needs without being shamed. Autism is not one of them. Some severely autistic children will live at home forever, or in a residential home.  Some severely autistic children will still need help with all of…

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The Forgotten Side of the Spectrum

Severe Autism… I did a brief radio interview recently explaining our version of autism. I discussed the isolation, the lack of help and support, and the lack of understanding and acceptance for severe autism. Tim Nicholls, who is the policy manager for the national autistic society, responded to my radio interview yesterday. I’ve listened to his response. I want to talk about this part that he said below… “It doesn’t need to be something that is always holding them back, with the right support, depending on their needs, children with…

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Grieving Over Two Very Different Things

In December 2012, I had a baby girl but she ended up passing away to SIDS three days after my husband came home from a deployment. We were devastated and broken. Our whole family was. It was some dark times. One month later we found out we were expecting again. I said this time I’m going to do everything different. I ate better. I cloth diapered. I made organic baby food. I wanted to breastfeed. I was so scared of SIDS happening. I just didn’t want to ever go through…

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The First Day of Autism

The first day I realized my baby boy was autistic is one of those days that will forever be etched in my memory. Like the day my husband and I found out in the ultrasound room that our baby was a boy, or the night we walked together on our favorite trail while I was in labor with him. My husband sang to my stomach to let Johnny know he was loved, and that we were waiting for him on the other side of the dark. I remember it like…

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