This morning we were running around getting three kids ready to leave the house. Back to school day! Cooper was the most excited. Up and dressed and ready to go and saying…’SSS-OOO- LLL’ every time I walked by. It was a bit chaotic to say the least. Packing lunches, finding school iPads, headphones and chargers, gathering snow gear…it was a lot. We are definitely out of practice. Jamie noticed that Coops put his shoes on the wrong feet. It happens quite frequently but we are also so proud of him…
The silent battle in raising a child with special needs. The fuel that makes our stomachs churn and our hearts break. We know our babies more than anyone else. We know how they smelled as a newborn; what their sloppy toddler kisses felt like. We know how their infant body felt warm pressed against ours at all hours of the night. We know the joy in their eyes on Christmas morning. We simply know every corner of our children. So why can’t others see it? Ever since my son was…
“Come back to me…come back to me…” I mutter as I hold my daughter who is once again slipping into the unknown. The only words that come to my mind as I rock my beautiful little angel in my arms. You see there is a tantrum, and then there is a meltdown. Since the months of Avery’s diagnoses they occur less often, but when they do it is as if my soul is ripped out of my body, chasing into the battlefield after her. There is simply no other way…
Did you fear the word autism the first time you heard it in relation to your child? This morning, I was asked why I feared the word autism in the beginning. The question came from an autistic gentleman in a completely non-judgmental way. I’m thankful he asked. It’s one of those questions that pushes me out of my comfort zone. One that prompts me to look inside myself. Look back. Be honest. And learn. When I heard the word autism for the first time in relation to Cooper, I was…
An excerpt from chapter 9 of Forever Boy: When the professionals first told me about autism, they described it to me as a spectrum. I immediately thought of a spectrum of light, like a rainbow through a prism. But it wasn’t that kind of spectrum. Or at least the experts didn’t explain it that way. They described it as a long line, with one end being the most severely affected and the other end being less affected. They threw terms at me like high-functioning, low-functioning, severe, moderate, and mild, even…
A beautiful moment to share with you… This morning, when I came out of my bedroom, far earlier than I would have liked, I knew my Cooper was waiting on the stairs for me. For one I could hear train whistles and happy music. And secondly, lately, he’s been waiting for me more. Near, but far. Not close enough to touch, but easily heard and seen if I peek around a corner or under a table. He gasped as he usuallly does when it’s been a period of time since…
Back when my son was diagnosed with autism, what now feels like a lifetime ago, I used to hyper fixate on certain things. Things I hoped he would do. Things I was scared would never happen. Goals. Dreams. Fears. I used to be so scared I’d never get grandchildren. Crazy right? I mean he was 4 years old and I was thinking about being a grandma. Or his graduation. Would we have one? Would he ever drive? Go to prom? Have a first kiss? Heartbreak? All I can say is…
Parent: I wish my autistic child could talk to me. Parent: I wish my child with autism could communicate with me. Parent: I wish I knew what my nonverbal child was thinking. Parent: I wish I knew what my child loved. Child: Listen and I will show you in the most mysterious ways. Be prepared to wait. And to listen to more than just words. My son Cooper takes photos with his iPad. Hundreds and hundreds a day. I know because the iPad is linked to my iPhone and every…
‘Dad! Is everything alright?’ That’s what I said when ‘Dad Cell’ flashed on my phone this afternoon. I half expected it to be someone else. A relative. A nurse. Someone telling me something happened. My stomach felt sick as I waited the few seconds for a voice to respond. ‘Katie. Did you catch the game yesterday?’ I gasped. See my dad hasn’t called me in a really long time. He used to call me weekly and then he had a stroke and it changed him. It changed the way he…
A few days ago I was driving myself and my three sons home from my mom’s house in Wisconsin. We had just celebrated Christmas and my SUV was packed to the brim with toys, leftovers, and love. The sky was dark as I navigated the backroads I’ve driven home for 30-some years. I remember being a little girl and dozing as my parent’s car bounced over the same bumpy roads. Only this time I was the parent, and I had two sleeping boys in the seat behind me, and one…
