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Aren’t You the lady that came here dressed as…

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“Lighten up, just enjoy life, smile more, laugh more, and don’t get so worked up about things.” – Kenneth Branagh

Okay so that last bit is hard, I’ll admit. I get worked up quite a bit because well that’s my temperament and life in general especially when you have loved ones you care for with more challenging needs.

That being said, I definitely full on embrace the idea of lightening up, enjoying life, and smiling and laughing more.

So funny story that totally put my life into perspective and just how I’ve “coped” with being surrounded by constant stress.

I go to my local supermarket one day, just buying a bunch of stuff for yet another event I have with kiddos and their families for The Tommy Foundation, and all of a sudden I notice that my cashier can’t stop staring at me.

Me: “Is something wrong?”

Cashier 1: “Um, sorry I was just… um, aren’t you the lady that came in here once dressed as Hermoine from Harry Potter?”

Before I can answer…

Bagger: “No, no, she came in here dressed as Katniss”

Cashier 2 (next aisle over): “No, she was a minion!”

Me: “Okay, I’m going to save you all some time—they were ALL me.”

Confusion and stifled laughter…

Me: “I work with kids and adults that honestly can use a little joy in their life, so I feel that the more free and ridiculous I allow myself to be, the more freedom I give people to let go and not take things so seriously and maybe even embrace some childlike part of themselves.”

 

My words could very well have gone over the heads of the 3 “kids” helping me that day with my groceries. The oldest couldn’t have been over 20 and the concept of an older woman dressing up all the time and GASP! Not caring enough about what other’s thought of her probably left them reeling.

So why do I dress up?

Good question. In looking back at the 11 years since I’ve founded the non-profit I spend so much blood, sweat and tears on, I can recall times when I was more “professional” and blended in just a wee bit more to the community that has now been my home for over 20 years. It IS Amish country after all, I could do a better job blending in, I suppose.

Well first off, I like it. Yes, I’ll be honest, there is still a huge part of me that wants to play pretend and have fun and truly feels alive when I read books and watch films and then can somehow bring them to life. I wanted to be an actress in a former life, so there’s that too.

Two, it genuinely puts a smile on the faces of kids I work with to see me not only excited to see them and welcoming, but also being completely up to making an utter fool of myself for their amusement.

Three, it’s okay to take something that upsets you or that confuses you or that isn’t always happy and make the best of it.

There are days I don’t want to work.

There are days I don’t want to be “on”.

There are days I just want to stay in, cry and heck maybe even drink wine.

There are plenty of statistics and stories and even support pages and groups and social media updates that would condone me doing any of the things I already listed.

Studies Show…

One research study in The Journal of Autism and Developmental Disorders noted that moms of kids with autism have PTSD that is so high that it is similar to that of soldiers in active combat!

Excerpt from the New York Times on the study, states that:

“Researchers from the University of Wisconsin at Madison followed a group of mothers and their autistic children (adolescents and adults) for eight days. They were interviewed at the end of each day, and saliva samples were taken every four days.”

Among the findings:

  • The levels of chronic stress experienced by the mothers were similar to those of combat soldiers. The greater the child’s behavior problems, the worse the mothers’ stress.
  • Mothers of those with autism reportedly spend at least two hours more each day caring for those children than a comparative group of mothers whose children were not autistic.
  • The mothers of the autistic children were interrupted at work an average of once every four days. For the other mothers, the frequency was fewer than one interruption every 10 days.
  • The autism mothers were three times as likely to report a stressful event on any given day, and twice as likely to be tired.

There is probably at least a study a day that comes out with some reason why 1) we are to blame in some way for why our loved one has autism or 2) we should totally be miserable.

What’s the point lady?

The point I am trying to make is that life is too short to waste finding reasons to stay miserable.

I get it! I’ve read the studies.

I get it! I’ve been to the meetings and conferences and so on… our lives are crazy and some days we don’t want to adult. It’s hard.

 

You don’t have to dress up and act silly but find whatever version of your passion it is you have inside you—whatever part of self-expression you’ve lost throughout your years and bring it back into your work, your life and your children.

 Don’t Let Anyone Dull Your Sparkle!

 

Unexpected Uses of Snapchat with the “Differently Abled” – or anyone you want to actually connect with.

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How many times growing up did you hate it when an adult told you the phrase “these kids these days?” If you are like me you HATED it!
Well a few decades and my own child, quite a few nieces and nephews, cousins and friends’ kids later, and I find myself expressing or thinking the exact same thing.

Our kids have literally no attention span—or so it seems. If we are honest about it, neither do we, but that’s a story for another day, I think.

Technology has been an amazing advancement but at the same time it has made it so difficult for our kids to focus or stay on task.

That’s not my tale though for today!

Surprisingly, I’ve found an incredibly useful function of one social media technology tool in particular—Snapchat.

For those that know me, I am the mom of an older child with learning differences and I co-founded and am President of a non-profit for Autism, The Tommy Foundation, for individuals with Autism and Related Conditions.

Well in my world, ability to stay focused is usually an issue for sure and many times there are so many distractions in the environment that can set off our loved ones.

We can feel bombarded by noises, smells, sounds, visual input and so forth that can make seemingly simple or even fun activities—like say bowling- a real chore.

ENTER SNAPCHAT!!!!

In the last year or so of my daily life and my work with kids, I’ve found that a little snapchat sprinkled in to the lives of the kids—and even their parents—really goes A LONG WAY.

1. Work Story

When I see a child approaching anxiety or frustration mode, rather than assume the worst, I take a deep breath and offer up my phone and some filters so that the child can refocus on something else for a bit.

The results are incredible. 9 times out of 10, if you catch it before it turns into a meltdown, the child or individual will completely forget why they were starting to get upset and will want to take picture after picture.

How is this useful?

Well, when you are in a public place where you need to take turns, all of a sudden you now have a tool that allows your child to actually relax and wait without resorting to having to yell at them or be physically restrictive with them—which can cause some embarrassment that might make an experience that was supposed to be fun, much less so.

 

 

2. Personal Story

Over the weekend, my husband and I worked with a dear friend on a new communication system for our son. Our friend, Julie, has known our son and worked on and off with him with a variety of therapies throughout the years.

This time though we were learning something that allows us to have our son find a new way to open up with us and let us understand more about what he’s actually taken in all these years.

The specifics of that are something for another day, but for now, I will say that the process of learning how to “letterboard” – using alphabet boards to point and communicate with us is something that can be rewarding and super frustrating for everyone involved.

It will take years and a lot of commitment for him to become “fluent” but it’s a task we are more than willing to take on and which requires a lot of us and our boy.

BRING IT ON!

In the meantime though, the moments of frustration and stress can really be killers to the mood needed to move on and really push through to help him be successful in communicating and for us to be successful as his voice.

Again, Enter Snapchat – a non-food based motivation that won’t make you create bad eating habits (common complaint among parents and caretakers of other motivators used) that can help someone stay focused and on task or which can be offered as a reward.

Our goal each day is to make it through two, 20-25 minute, session on a lesson we do. Well today that 20-25 minutes took over an hour and half because of his body not wanting to cooperate and his frustration.

At the end though we were still buds and he was happy with me, cause we did some snap-chatting and it helped us push through and end the lesson on a great note.

A few silly videos and pics later and my boy forgot all about his frustration. He rocked his lesson in the end and we spent just as much time having fun as we did practicing something that made him work harder than he ever has before.

So stinking proud of my kid. He’s truly a rockstar!

 

 

 

 

3. Make it About Bonding

I live in the world of the “differently abled”.

It’s something I was thrust into as a mom and then choose voluntarily as a co-founder of a non-profit that deals with the issue.

I am full in, I was drafted and I accepted fully.

Now, it doesn’t ALWAYS have to be hard. You are allowed to have fun. You are allowed to make things playful and enjoyable and silly.

So many of our social media tools can be isolating—despite their intent to bring us together. One of the values I’ve found with any child really, but especially with ones that are more visual thinkers, is to have a tool that allows you to use filters and sounds to help you express ourselves, to see ourselves in a different light, and share a moment with a loved one.

Some of my favorite bonding moments lately have involved this tool.

I’m not at all embarrassed to use it as a tool to help me bond with these kids that I love and I want to connect with.

For me, it’s all about connecting with them at a human level and modeling love, joy and togetherness.

What about you?
What tools do you use to connect and create joy with your loved ones?

Sound off in the comments and to update a “classic” from when my kiddo was a Disney-channel-holic in the past from “Kim Possible” : “email, snap me, if you want to reach me, if you want to facebook me it’s okay. Whenever you need me baby, email, snap me if you want to reach me.”
My Snap and Instagram Name is: Miss Sugey