Archive for October 2018
Angels on the Seas
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…
Read MoreLiving the Unique Autism Life
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’,…
Read MoreIt Wasn’t Just About Autism
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.…
Read MoreChanging Flight Plans to Holland
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…
Read MoreControlling What I Can Control
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…
Read MoreI am the Parent of a Child with Autism
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…
Read MoreSaying the Words Out Loud
“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,…
Read MoreWhy Being Mightier Can Help Your Child
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.…
Read MoreHow Do You Do It?
In the middle December of 2014, my husband, Yuki, and I were going to talk to my parents about the decision that we had made to go through an adoption agency to adopt a child. In March, earlier that year, we had found out that our baby had not made it. No real explanation really…it was the first trimester and the babies heart had stopped. “The good news is that we know you can get pregnant,” the doctor had said. The baby stayed inside of me until October. Yup, you…
Read MoreLove Needs No Words
“Don’t worry Sadie, you can hold your ears, I’ll always be here to help you.” These were the words I overheard my five year old Max say to Sadie as I was walking past the bathroom. She was holding her ears and needed help with her pants, without hesitation Max helped her and continued on giving her step by step instructions on how to wash her hands. He’s the brother that never wants to see her upset, he’ll step in to tickle her or make her laugh until she’s forgotten…
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