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Sometimes it’s the Little Things that can Make the Biggest Difference

Sometimes it’s the Little Things that can Make the Biggest Difference

Participation has always been a tricky issue for our family. When our kids were really young, most of our family excursions ended in frustration and tears (sometimes mine).

I would feel like a total failure when I would see pictures of friends on social media doing things that included the whole family.

Pictures where the kids were actually smiling, no one was having a meltdown, and it looked like everyone was having a good time. I feared that we would never get to that point.

In time, I began to realize that every family situation is unique, and each journey is different. Sometimes you just have to think outside the box and do what works for you.

Although the excursions have gotten more manageable as the kids have grown older,  there are still a few things that two of our kids can not physically do, but we have found ways to work around them.

I have also found as far as participation goes, it’s the little things that can mean a lot.

Our daughter Lilly has had a feeding tube her entire life. She is now at the point where she can drink liquids, but can not eat anything more solid than baby food.

Despite this, she has always had a place at our dining table so she can join us at meals. Whenever we get treats for the boys (cookies or a little candy), she gets one as well.

She may not be able to eat it, but she  gets as excited as her brothers because she is able to be part of the fun.

When she started her last new school, there was an issue at lunchtime; she was having a meltdown, and no one could figure out why she was so upset.

It turns out that the new staff saw her feeding tube and assumed she would not need a lunch tray because she couldn’t eat anything on it anyway.

They were 100% correct, but Lilly was still upset because she wanted to be like the rest of her class. She felt out, and her feelings were totally justified.

After brainstorming a solution with the school staff, she now gets to select a couple of items to put on a tray at lunch so she can feel included. It’s a simple resolution that works for everyone!

Our youngest son Chance has a tracheostomy tube which puts a limit on family activities we are able to do.

He can’t go in water deeper than a couple of inches, so classic summer activities such as going to the lake or into a swimming pool are out of the question.

We did take the kids to a beach last winter so they could see the ocean, but (luckily) he was content to dig in the sand and showed little interest in the water.

At home, he loves the sprinklers and his water table for cooling off in the 100+ degree heat that is typical of summers here in Northern California.

It’s a small compromise that brings a lot of joy and hours of fun for him and his siblings.

Chance also has chronic lung disease, which puts him at high risk for respiratory infections during cold and flu season.

When he was a baby, it was easy to keep him isolated in the winter. Now that he is an active seven year old- not so much.

It’s hard to find a balance sometimes, but now we take it on a case by case basis and  weigh the risks and benefits of taking him out somewhere.

If it’s not worth the risk, we divide and conquer so one of us can stay home with him.

It tends to be quite rainy here in the winter so we do a lot of indoor activities with the kids where everyone can join in; board games, arts and crafts, and cookie decorating.

Lilly may not be able to eat the cookies, but she has no problem licking the frosting off the spoon!

It’s been said that we can find joy in simple things and as far as finding ways for our kids to participate in some fun activities, we have found this to be absolutely true.

Sometimes it’s just a matter of coming up with creative alternatives, but the end result is definitely worth the effort.

Firefly Blog

Real life stories, issues and experiences of day to day life by special needs parents and
healthcare professionals.

Jennifer Arnold

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I’m passionate about raising awareness about disability issues through education and outreach. When I’m not wearing my writer hat, I’m usually trying to control the beautiful chaos in my home.

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