Posts

Call Out: I’m Thankful For You This November

October 24, 2018

This November, I will honor the therapists, teachers, doctors, friends, children, spouses, therapy centers, and family members that make a difference in your family’s life. This could range from the friend who sat with your child while you showered (for the first time in weeks!) to the doctor who finally listened to you. Or, the grandparent that took your other child to the park so they could get a break from their sibling’s disability to the therapist who puts in hour after hour teaching, modeling and praising your child. It…

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I Thought I Heard my Nonverbal Son Call for Mommy

October 23, 2018

I can count on one hand all the times that I have dreamt of Zachary talking in my dreams. You would think since my son is four years old and has nonverbal autism that I would be constantly dreaming of his little voice. At this point I think I subconsciously put a wall up in that area. Those dreams are so vivid, so beautiful, and feel so real. As I start to wake up from those dreams I sense myself being so unbelievably happy, and then I become fully awake…

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Angels on the Seas

October 22, 2018

On a chilly, blustery day somewhere in the Gulf of Mexico, I sat on the deck of a cruise ship watching two young women in orange T-shirts lift a wheelchair-bound teenager out of his seat, carry him up a flight of stairs, and slide down a water slide with him.  I watched as his face reflected pure glee at the bottom of the slide.  The ladies lifted him out of the water and carefully placed him back in his wheelchair.  Then they did the whole thing again. All to give…

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Living the Unique Autism Life

October 20, 2018

It is really scary for me to share my experiences with Autism.  I have been living this ‘unique Autism life’ for over 18 years; and I’ve received everything from pity, to criticism, to compassion, to hatred because of my children. I really don’t want any of those feelings. I just want people to enjoy my children for who they are, and see the imperfect blessings they bring. So, it’s with trepidation that I put this out there…to share my little piece of what it’s like. Not just the physical ‘alone’,…

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It Wasn’t Just About Autism

October 19, 2018

This was our view while we waited for fireworks on Independence Day. It was a lovely sight with the flag hanging in the street and kids laughing and playing together. Some were doing cartwheels. Some were playing catch. Some were shooting hoops. They were all ages from toddler to teenager. It felt like summer. It felt like freedom. It felt like community. Until it didn’t. My son is 7. He’s sweet and funny. He’s creative. He loves peanut butter and books and Lego person heads. He has beautiful blue eyes.…

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Changing Flight Plans to Holland

October 18, 2018

Mission Control has changed our course…again. Some of you may know the poem “Welcome to Holland.” For those of you who do not, allow me to explain. Or, if you prefer, you can follow this link to the poem. Welcome to Holland “Welcome to Holland,” is a poem written by Emily Kingsley about how it feels to have a child with special needs when you had already prepared for a typical child…like planning a trip to Italy. However, when that day arrives the plane changes its flight plan and lands…

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Controlling What I Can Control

October 17, 2018

On day three of Harbor’s life, he cried all day. He nursed and fussed. Nursed and fussed. He didn’t sleep for nearly six hours. At 3 pm, I broke down. Not because of exhaustion. Not because of the stress of nursing. Solely out of fear. I said the words aloud that I feared the most, ‘Jamie, he’s autistic. I know it.’ Jamie, the one who is always calm, always level headed, never emotional, said, ‘no he’s not.’ But I could see the fear in his eyes. At 5 pm, Jamie…

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I am the Parent of a Child with Autism

October 16, 2018

If you see me about and I look like I’ve had no sleep, know that you are not wrong. The last thing I want to do most days is plaster myself in makeup. I’m clean and I’m showered. My hair is slapped back and that’s enough. I bump into people I know and maybe some who I haven’t spoke to in a while and I know people mean well but I just need to explain something about autism. If you’ve met one person with autism you’ve only met one person…

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Saying the Words Out Loud

October 15, 2018

“I pray she’s okay…that she doesn’t face the same challenges as Leo,” I expressed to my Mom, a couple of months ago, as we were driving. Pausing for a moment, silence palpable as I bit my lip, hesitant to continue on…Afraid to allow my thought a voice… “And if she is okay,” I said, my words already cemented in guilt… “If she’s okay…maybe she can take care of her brother when they are older.” “I know,” my Mom responded quietly. “I know.” My sister, Victoria, has special needs. Growing up,…

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Why Being Mightier Can Help Your Child

October 15, 2018

Mightier, a program developed out of Boston Children’s Hospital, helps kids build emotional strength through video games. It helps all kids, regardless of current emotional regulation ability. It does this because it meets them where they are, letting them take the skills they already have, and turn them into regulation skill that works for them. It let’s kids face down the challenges in their life with grace and find their best self. Why be Mightier? Kids with emotional regulation find success. They do better at school. They form better relationships.…

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