Posts Tagged ‘special needs parenting blog’
We Made A Bucket List
I have a bucket list. I used to think such things were cliche and cheesy and what does it really do anyway? And then, at 24, I became a mom. I really wanted to be a mom. In high school, on career day, I dreamt about lots of careers but in the back of my mind I always thought, but I’m gonna be a stay-at-home mom so I never really took those dreams very seriously. One cold January day, my dream came true! The little baby boy I had prayed…
Read MoreAn Open Letter to the Parent of a Child with a Disability
Dear Parent of a Child with a Disability, I saw you today at the local children’s hospital. Your body looked worn from the long days of countless appointments, multiple doctor visits, and always being on watch for another possible seizure stealing your child away. Your hair was pulled up in a ponytail, enabling you to always be able to react to any needed circumstances. Your little one lay her head quietly on your lap, she, herself so worn from the past 75-hour hospital stay. Yet, you smiled kindly on her,…
Read MoreThe Fear of Wandering
Last night, I saw my sweet boy for the first time as a grown young man. My dream was so real. Until now, I really hadn’t been able to picture him outside of toddlerhood. I kind of blame that on autism. Maybe it’s the language barrier between us, or the discomfort of not knowing exactly what his future looks like. For some reason I just couldn’t picture him, or didn’t allow myself to try. He was big, taller than me. Happy and gentle. And strong. He clung tightly to my…
Read MoreMy Son, You Have Always Been You
My son I have a confession to make. Back when you were little, I used to dream about a you without autism. I was lost, and sad. Worried and confused. And I thought that there was a you, deep inside, that didn’t have autism. I would search for him. I would think, once I find that you, this will be all better. I just have to try harder. I was going to do everything in my power to get to that you. The you who talked. Who played. Who made…
Read MoreThe Doctor who said, Your Child is the Least of my Concerns
My daughter is autistic and started having seizures at age 11. I remember the day I got the call from the school nurse that she had a seizure in class. I actually expected it at some point due to her neurological issues, so it didn’t take me completely by surprise, but it was terrifying nonetheless. We already had a neurologist so we had the 24 hour EEG right away which confirmed she was having partial complex seizures. The type where you just kind of stare off into space for as little…
Read MoreSpecial Needs Parenting Changes Us Entirely
Special needs parenting changes us entirely. There is no denying that. Because the truth is — the first few years are going to pull you so far away from who you used to be that you won’t even recognize yourself anymore. You’ll find yourself looking in a mirror, bags under your eyes, either heavier, or skinnier, and not recognize yourself. It looks and feels like you’ve aged a hundred years. Or maybe you are standing in a crowded room, feeling entirely isolated and alone, and wonder if you are invisible.…
Read MoreYou Can Feel Sad and Love Simultaneously
You can feel sad about your child’s diagnosis and still love them with every fiber of your being. If you do, I want you to know that you’re not alone in your feelings. It doesn’t make you a bad parent. You may feel powerless, frustrated, and depressed. I know I’ve felt all this and more. I’d kept these feelings to myself for a while because I was ashamed. I was afraid to admit them. I love my son Charlie, so the sadness that engulfed me was confusing. For a long…
Read MoreThe Seventh Year
In church we sing, Let the King of my heart Be the wind inside my sailsThe anchor in my waves…‘Cause You are good You are good, oh oh Oh, He is my song…You’re never gonna letYou’re never gonna let me down – Bethel Music My son, tonight I held you as you stood on a chair in our church. I sang this song to you and you smiled at me. I wondered if you understood that I was worshiping and thanking God for trusting me to be your mom. This song resonates with me…
Read MoreA Letter to the Siblings of Kids with Special Needs
My son said to me today, “ I want home to be fun”. So, I wrote both of my boys a letter. It’s long, but my heart was heavy. A letter to my boys ( and other siblings) of newly diagnosed kids with special needs: No one told you your path in this world would take a sudden turn. It would get bumpy and rocky and sometimes you’d be hanging on for dear life to the edge of mom’s last ounce of patience before it would straighten out for a…
Read MoreYou are Amazing Kid
My son has never ran inside to show me something. He has never rushed home from school to tell me about his day. He’s never told me a story. Or even asked me a question. There is no school work to look at. No homework to do at night. No report cards. His artwork is not hanging on the fridge either. We said goodbye to all of that possibility in kindergarten. We said goodbye to typical education. We shifted our focus. We picked the things that really mattered. Safety. Awareness.…
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