Tuesday, March 25, 2014

The Swinging X

Having a child with Fragile X Syndrome who has a constant need for sensory input is quite an exhausting challenge.

Really exhausting for only one of us though.


Or whoever else is helping Baby through her day.

Baby doesn't get exhausted at all. It makes her feel SO much better. It's amazing to see how much input she needs physically to get through an entire day without biting, hitting, pinching or choking someone.


So, with the help I have been receiving for Sister and the "extra" time is has given me, I spend many hours of my day dedicated to her sensory input needs.

I've told you about them before. Recently, in fact. So I won't get into the details of the squishing, rolling, wrapping, jumping, swinging, pillow fighting, and cheek rubbing... but I will tell you that it was quite interesting having to "squish" her in the middle of the Primary room on Sunday at church. When we first walked into the door while all the other children, parents and teachers were filing in she immediately saw the crowd and grabbed my hand and said, "squishies."

At first I was hesitant to lay on top of her while wearing my dress and tights in the middle of the room with many of the adults and children watching.

Then, it hit me, "She knows that she is going to be a bit overstimulated in here and she knows she needs so sensory input to help her through it. AND! AND! And she told me what she needed!"

There was no way I was going to shun her request. Those were huge steps for my little Baby.

So as she, with a huge smile and twinkling eyes, laid on the floor at the back of the room by the entrance to the primary, I, as lady-like as possible got down to the floor and laid on her and squished and loved her and we both giggled. I'm not sure what anyone thought of that... it's not often you see a mom laying on top of her small child in church... hmmmmm. It sounds weird when I type it here too.

Ha! Ha!

We both giggled.

I was proud of her for the request.

I was proud of me for not worrying about what everyone else thought.

Later that day as she was still needing some sensory input, I couldn't swing her with Marc anymore because my back just couldn't do it anymore. So, Brother volunteered to help Daddy swing her.

I was so proud of him wanting to take care of her and totally understanding her needs.

I remembered to take a picture:

Every parent loves to see their children truly treating each other like family.

But, there's just something about watching the older Brother with Fragile X Syndrome taking care of his Baby sister who also has Fragile X Syndrome and to watch him smile as he completely understands the help he is giving her.

I love these kind of moments.

0 remarks: