Thursday, April 23, 2015

"What's wrong with those kids?"

As I was walking the boys into school this morning, Gage covered in the soda he'd just spilled on himself and Gamble happily chewing on his right shoe, I heard a little voice above their vocal stims, "What's wrong with those kids?"

I couldn't just ignore it, the little girl had asked a question, and while it was certainly aimed at her daddy, I knew he had no clue. So, while still walking forward, I turned around and told her "They have autism, they don't talk yet - but they really like making noises, just like other kids like to talk and ask questions."

She accepted it without further question, and her dad accepted Gamble's offered hand, returning his smile, as he asked some more questions: Do they have any means of communicating yet? Sign language? (I'm very in tune with them, but no, they don't really have many communication skills just yet). Are they twins? How old? What are their names?

It was a nice conversation, I didn't feel like I needed to defend my boys, but I felt like I wanted to answer the little girl's question, just like I wanted to answer the boy at the dentist office's funny looks at Gage yesterday. He didn't ask, though, so I didn't offer.

This isn't something I only do in April - if anyone has questions about my boys, I'm always happy to answer them. The more people know, they more they accept what is, right?

I've noticed, though, that other children are noticing more and more that the boys aren't like them - they don't talk, they vocal stim like crazy, they jump and spin and walk on their tippy toes, they don't eat what typical kids eat and they live in 'their own little world' most of the time - but they're still kids, they still like to play with toys and watch movies and run around. So while it doesn't exactly feel nice to hear "What's wrong with those kids?", it moves me to make sure that becomes acceptance, rather than judgment.

If I can't advocate for my boys, whether the questions are directed at me or not, then who will?

Saturday, April 11, 2015

Reader Feature: Lyndsey J.

As part of ‪#‎Autism‬ Awareness/Acceptance Month I'm featuring readers who responded to my call for submissions earlier this month. Today's feature is Lyndsey J. - her mom, Amanda N. sent in answers to some questions, which I used to write up a little feature on Lyndsey. I hope you enjoy!


Lyndsey J., age 2, is a member of our fine autism community. Her mom, Amanda N., noticed early on that Lyndsey wasn't developing typically. Lyndsey was diagnosed before she turned 2, at Vanderbilt Medical Center.

“She wasn't making eye contact,” Amanda shared. “Not talking, not holding her cup, and [she] was VERY picky eating, with a lot of gagging problems. Also, she never responded to her name, at all.”

Early intervention, Amanda stated, is vital for children on the spectrum.

“I cannot stress enough the importance of early intervention,” Amanda commented. “I have seen my little girl progress to making eye contact, eating new foods, learning sign and being able to play with other children. All because of early intervention.”

Being on the spectrum has ups and downs, Amanda noted, but Lyndsey's giggle and love of being outside are just two of Lyndsey's many positive attributes. Lyndsey loves Mickey Mouse and Dora. She's also very loving and affectionate towards her mother, giving her hundreds of kisses a day, which Amanda has been told is “unusual for a child on the spectrum.”

“My heart breaks daily when I look at my beautiful little girl and see her struggling to do small things that others take for granted,” Amanda noted. “I know, though, that we are going to be okay! We are fighting and we won't give up! We are on this journey together and WON'T quit.”

However, Lyndsey doesn't yet understand the concepts of danger and boundaries, making family time outside stressful.

“It makes it very hard as a family to spend time outside...when you have to be on constant guard,” Amanda added.

The stresses and struggles of parenting a child (or children) on the spectrum can become overwhelming, Amanda hinted.

“...Remember that it's okay to make time for yourself,” she said. “It's very easy to 'lose yourself' in a sense, when you are raising a child with autism.

“Pray,” she continued. “Talk with your mate, talk with friends. Reach out for advice and let people help you. Also...cry! Get angry! It's okay. It's healthy, I think! It's all a journey. It's a daily struggle. It can be the most bittersweet adventure, ever! Don't give up...”

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Thanks for sharing your story, Amanda N.

If you'd like your family to be featured, just send me a message at https://www.facebook.com/chockfullasd.