What is Joubert Syndrome?

.summer adaptations.

I am a summer girl. 

I love the long days. The hot days and warm nights. The tans. The food. Just everything!

In a dream world, I would send the boys outside to play- ride bikes with the neighbors, run around barefoot, swim in the pool, run through the sprinkler, eat popsicles, etc. And I wouldn't worry about them coming inside until it was time for baths. This was my childhood and pretty much what I had envisioned for my boys.

As you can imagine, the reality of what our summers look like is drastically different from what I imagined. As much as I love summer, It complicates things for me and can be a lot to handle sometimes.

Reality looks more like- pushing one or both of the boys in the wagon, patching bloody knees from Parker crawling on the cement, finding "bikes" or mobility toys that the boys can use, tending to tantrums from one to the other about carrying them somewhere else or getting them something different to play with, and taking them to the pool is almost a nearly impossible task by myself.

Usually by the end of the summer day I am hot and sticky and exhausted from trying to meet their needs, make their summer days as fun as possible, but also know and keep things within their limitations. It's a tough balance and I find myself just wishing and dreaming of the days when they can walk and run free and imagine how much easier it will be. It's hard not to go there.

But in the meantime, I have found a few things that have given them some independence and allowed us both to have a more enjoyable summer as well as some great memories we have created so far.

It may not be what I had imagined, but there is always a way to find the positive and the good and we are harvesting the good this summer!

Lots of practice walking in the walker! This helps us avoid scraped and bloody knees.


 Finding local parks and playgrounds with adaptable equipment. We found a big hill full of sand that the boys loved!

Parker is obsessed with riding his plasma car. This has been a lifesaver as he can be out and about with the neighbors and have his independence. HIGHLY recommend this toy!

 Practice walking with toys- shopping carts, lawn mowers, etc.

Instead of going to the pool, inviting the neighbors over for a "pool party" in the backyard can be just as fun!

 My boys LOVE chalk and "painting" with water. Just fill a bucket and give them paint brushes and it looks like they are painting the cement.

A lot of picnics in the yard!! Breakfast, lunch, and dinner become super fun if you eat them on a blanket outside :)

Hours and hours spent in the sandbox. Lane still tries to eat the sand sometimes so this can be a little difficult with him!

And one of their favorite things to do is "help" daddy with yardwork. A shovel and some dirt and my boys are in heaven!


2 comments:

Adrienne said...

You are amazing!! I am a summer girl too, we should do summer girl things together!! :)) I don't really know what that means, but it could be fun. :-p

sallyo said...

I am so glad our kiddos get to do summer things together! You amaze me with your creativity and are truly a blessing to your family.