Posts Tagged ‘severe autism’
Cooper is Eight
Eight years ago my world was turned upside down with the arrival of my first born son. My Super Cooper. The one who made me a mom. As I sat down to type this post I let myself think back over the last eight years. And I thought about all of the words I could type. The stories I could share. The highs and the lows. The amazing joy he has brought me. And of course autism. I’m struggling finding the words right now. Birthdays are hard. They are a…
Read MoreThank You to the Best Aunt and Uncle
After our son Emmett’s official Fragile X diagnosis we told all our family members about it and posted about it on social media. Everyone told us or wrote to us telling us how much they care and how it will be OK and if we needed anything to let them know. But after the Fragile X diagnosis their was a quiet pause from these individuals. No one says anything or asks us about Emmett. They don’t ask about the multiple diagnosis’ he received after the Fragile X diagnosis. I have often…
Read MoreAt Least He’s Not Dying
“My coworker says to me “Well at least he’s not dying.” She meant it with good intentions I’m sure. But it stung. I was in fact mourning the loss of the life I thought my son would have. Would he ever talk to me? Would he ever go to preschool? Would he ever make it to high school? Would he drive? Fall in love? Have a family of his own? “At least he’s not dying” it still burns. Maybe I’m being selfish. Maybe I am being ungrateful. My son is…
Read MoreOnce Again, I Go Numb
A few days ago I received some validation. Validation I didn’t want to receive. And as I processed it, I realized how numb I must really be to all the emotions that go into special needs parenting. Every time I chat with a 7 year old boy or listen to a 2 year old speak in full sentences. Or watch my 5 year old growing up, achieving every milestone and becoming more independent. Or when my autistic son yells at me and melts down repeatedly. I must be numb. And…
Read MoreWe’d Become What I Was Most Afraid Of….
When my son was diagnosed with autism over four years ago, I remember not being able to picture him as a teen. And not one person in my life, not doctors, not therapists, could tell me what the future held. The unknown is very, very hard. I think it’s harder than knowing. I so badly needed a glimpse of the future. I needed to know what nonverbal looked like at age 15. Or 20. But I was scared too. I am big enough to admit that I wasn’t ready to…
Read MoreControlling the Hoarding
A few days ago, Jamie and I spent the day, 10 hours to be exact, going through our son’s hoarding piles. We were absolutely shocked by the amount of stuff we found. Honestly, we had no idea it had gotten so out of control. We found piles under every bed, in every closet, under dressers, couches, bookshelves, entertainment centers and even the fridge. Almost every item was damaged and couldn’t be salvaged. By the time we were done we had thrown four garbage bags. In this video I touch on…
Read MoreAutism and Showing Affection
Super Cooper just kissed his baby brother. He smiled at me, walked up to him, touched his head and then kissed him. I almost fell out of my chair. I took this video a second later when I asked him to do it again. Showing affection to anyone besides me has never came easy for Cooper. It’s not natural for him. He doesn’t willingly give hugs or kisses. Or ask for snuggles. So this pretty much made my whole entire year. He never ceases to amaze me. I’ve never seen…
Read MoreEvolving as a Special Needs Parent
When my son was first diagnosed with autism I struggled to even say it out loud. I felt awful saying the words, ‘my son has autism.’ When I said them, I felt like I was betraying him. Or making it real. Then, once I was ready to talk about it, I quite literally had no one to talk with. None of the other parents in my group had autistic children. They would be talking about sports and education while my life was therapy, doctors and sleep deprivation. I realized quickly…
Read MoreCooper’s Eighth Birthday Party
I know so many of you are wondering how Cooper’s birthday party went. Well, honestly, it went fantastic. And I was nervous. Heck, I’m always nervous. Prior to this year Cooper has never cared about birthdays. The song scared him to death. Presents didn’t make sense. He didn’t care about friends or family really. He hated crowds and expectations. So around age four we stopped having them. We would celebrate the day with just our family. And that was fine. But this year was different. With the help of ABA…
Read MoreThe Parts of Autism Only We See
I’m writing this at 10 minutes to midnight. I’m lying in my bed with one arm trapped under my 16 kg, 3 year old son, his eyes have finally closed again but his breathing is still jumpy and uneven after his wake up. It is a regular occurrence for my son to wake up screaming and inconsolable. He wakes up so heartbreakingly confused and will often repeat the same phases which make no sense to me but it’s something that must be going over and over in his mind as…
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