Posts Tagged ‘special needs mama’
Bucket List
Have I told you all that I made a bucket list for our family? For 9 1/2 years we were mostly homebound. And in those 9 years we worked on things like safety, waiting, sitting, standing and communicating. The progress felt painfully slow at times. But his hard work, ours too, is starting to pay off. Last week we visited a zoo! The week before that it was a pool. Today, it was an aquarium. A real aquarium with sharks and sea turtles and string rays. The place was deserted…
Read More30 Reasons I’m Grateful I Get to Parent a Child with a Disability
* Because there’s a fierceness in my heart that wasn’t there before. * They’ve taught me what relentless love looks like. * They’ve introduced me to an amazing community of moms and dads who are tender fighters. * They rescued me from a pointless path to pursuing perfection. * They’ve taught me speed isn’t everything. * They’ve taught me to speak up. * Because they give the best hugs. * Through them, I’ve experienced what pure joy is. * They’ve shown me the value in being different. * Because of…
Read MoreStates Look to Put Label on Driver’s License for Autism
My son Johnny was almost five years old when he was diagnosed with Autism Spectrum Disorder. That was almost one year ago. Although we were told by experts they were unsure, I could have pushed to have him diagnosed sooner. To be completely honest, I think I was afraid of the label. I did not want people to hear he was autistic and assume so many preconceived ideas about him. I did not want them to expect the worst from him, or love him less. I worried teachers would dislike…
Read MoreDon’t Count Our Kids Out
Who needs some joy today? This kid had his first school conference in three years yesterday. He’s a big fourth grader now. And like I’ve known all along…he’s amazing. He’s joyful. Happy. Cuddly. Loves giving hugs. So smart. He knows so many sight words and is amazing on his speech device. The goal for me is typing words. I can’t wait until we can have a typed conversation. His bus driver and aide love him. His driver told me he hits the bumps for him because it makes him so…
Read MoreBecoming the Mom I Silently Judged
There’s a story I’ve been wanting to tell for awhile, but it’s hidden in shame. The shame is a silent one, as most are. We often hide our dark thoughts because shining a light on them would mean shining a light on all the things we silently do or say or think that reminds us that as humans we are flawed. That’s the thing about shame, in our minds it outweighs our goodness. Even when the scales tip in favor of our goodness, the bricks of judgement and self righteousness…
Read MoreAre You Aware?
Autism awareness needs to change. People need to understand what awareness is all about. It’s NOT looking at a kid who has autism and treating them like they’re neurotypical. It’s NOT saying, “oh, I’m sure that’s hard for any kid” when a parent says what they’re struggling with. You seeing my daughter’s autism and ignoring it is NOT awareness and acceptance. Be aware of the differences. Be aware of the struggles. We know you see the meltdowns and the rigid routine. We know you see that she’s not quite like…
Read MoreLove Needs No Words
Here is my blue-eyed, blonde hair, sweet boy looking at me. He shows his love through his eyes. He may be unable to tell me he loves me verbally, but he shows me in his unique way. Thinking back three years ago, life was a lot different. It was the start of our autism journey. It was the start that our life would change forever. He was not making any form of eye contact. He would not interact with peers. He would always want to be left alone. It was…
Read MoreThe Brave Ones
What is bravery? I’ve been thinking about that question lately. The definition is the quality or state of having or showing mental or moral strength to face danger, fear, or difficulty. It goes onto give examples of a brave firefighter. A brave nurse. A brave athlete. And no doubt, yes, they are brave. They face burning buildings and medical tragedies and catch the winning pass. They do things I could never do. They are brave. But I think about bravery in another way too. Imagine going out into a world…
Read MoreOur Biggest Day
Lately, I’ve been sharing a lot of firsts for my son Cooper. Tonight, was the biggest one yet. He and I sat and watched an hour long flag football game together. He sat. He watched the timer. (Two 25 minute half’s is a long time!) He waved at his brother who was playing. He held my hand. He asked my 486 times for trains. And we were present. Together. A family of five. This wasn’t just any first. This was a first we have worked towards every day of his…
Read MoreWe 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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