Three “Simple” Words

I love you. Three simple words. Most of us throw them around loosely. Take them for granted. We say them when we hang up the phone. When a loved one leaves the house. When we kiss our little ones good night. Sometimes out of habit. It’s something a mother hears a million times.. over a lifetime. That is unless your child is… NONVERBAL. Then you might never hear it. One of those things that most don’t even think about. I have told my daughter “I Love You” everyday, multiple times…

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This Is Independence

Two weeks ago, this kid asked me to ride the bus. Sorta out of the blue. He verbalized it…’H-U-SSS.’ (B’s are hard for him.) He showed me busses on YouTube. He showed me busses in books. He pointed them out in the community. And me, being the mom I am, smiled, cheered, and thought…no way. I’m too scared. He’s too vulnerable. I can’t do it. Nope. But his dad, well he reminded me how I preach about independence. Nonstop. I want my son to make his own choices. I want…

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We Are More

You must be sad… I’ve heard that phrase a few times over the past couple weeks. You must be sad your son rides the shorter bus… You must be sad he’s not in the gen ed room at school… And the zinger, the one I felt like a shot was fired and received, you must be sad you will never have a normal life… These statements, they don’t necessarily come from a place of hate or anger. They come from a place of misunderstanding. They simply don’t understand. I am…

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The Stories We Share

We are just a few weeks away from celebrating the 6th anniversary Henry’s autism diagnosis.  We celebrate now, but back then it was a different story. Six years ago, I was nervous and confused.  I can admit it now, but I knew nothing about autism before his diagnosis. It’s hard to believe because autism is now my life and my work.  But yes, at that point, I knew nothing more about it besides a few characters in TV and movies. Henry had a lot of the textbook signs back then:…

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Five Things I Wish I Knew Before An Autism Diagnosis

If you are new to this autism journey and are wondering how to process all the information out there, here are some things I wish I had known while going through the process. All autism characteristics do not all fit into a checklist.  Many of the early signs of autism we recognized later in our son as he got older did not fit into the standard website search.  Our son, at an early age, loved anything round.  He carried around balls, round fruit, played with practically anything in the form…

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Look For the Silver Lining

So many things could be said about the lack of “sunshine” surrounding a diagnosis such as Autism Spectrum Disorder. It’s labeled as rigid. And scary. And lonely. And most people (including us early on) are uneducated about ASD. Simply because it is thought to be almost “taboo”. In our case, we went through all the stages of grief (denial, anger, bargaining… all of them). Then you do yourself a favor, and you arm yourself with knowledge. Suddenly, the sky clears up, and you come around to the “acceptance” stage. I…

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Do You Ever Wonder?

“Do you ever still wonder what he would be like if he didn’t have Down syndrome?” She asked. It was an honest question from a new friend. She is several years behind me in this journey of parenting a child with Down syndrome. I vividly remember being where she is now. I remember feeling like the odd one out amongst family and friends- I was the 20-something who had a child with a disability. I watched as their children hit the milestones at the appointed time on that now dreaded…

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Our Secret World

Happy Sunday from this kid. We’ve had an interesting day. He asked me for a train guide from 2007. I told him I’d do my best but reminded him that he was most likely setting me up for failure. He asks me for the most obscure things. He had faith in me though. I know because he asked me well over 100 times. He also asked me to go shopping. And for amazon. And paper. And Target. When the Amazon van drove by I knew we were in trouble. I…

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“Looks Like You Had A Great Time”

Today our family went for a boat ride. When we finally docked after being on the water for a few hours, a sweet older gentleman walked by, saw our three adorable kids and said…’looks like you had a great time?!’ Jamie and I both looked at him and said unanimously…’oh no! It was awful.’ But we said it with a smile and a laugh and the man couldn’t help but laugh with us. See, it was 57 degrees, windy, cloudy and cold. I had thought it would be a beautiful…

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To Any Special Needs Parent Who’s Having One Of Those Days

Dear Special Needs Parent, I know some days are tough. You are beaten down. Your child is having a meltdown. Your teenager is having challenges at school and your young adult is desperately trying to be placed in a job or find somewhere to live. No matter what the obstacle is, we’ve all been there, special need parent or not. We want to run away at times because we wonder to ourselves “Will it get better? CAN it get better?” Your son can’t be bathed because of the texture of…

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