Dance With Me!

Written by:  Bella’s Biggest Fan

Labels.

When my daughter Bella was born prematurely 14 years ago so did the labels begin.

Doctors see diagnosis conditions and limitations. First was, if she survives, she may not be able to ever walk, or talk with limited intelligence.

In the beginning the labels bothered and aggrieved me. As Bella got older, as a special needs super mom, I worked hard finding therapies and diets to diminish the labels given to her, such as autistic, verbal, cerebral palsy, brain injury, developmentally delayed.

When I stopped trying to fix what everyone was saying was wrong with my baby, I truly saw Bella was special, not because of her clinical labels but because she showed me what joy and living your best life really was.

When Bella was five, she hated the leg braces she had to wear in order to walk “ right”. The orthopedics Dr told us that she can’t run in it, but at least she can walk. She looked at him and smiled and laughed, as is her way about everything, but this time she stood up and danced. Every mouth in the room dropped to the floor, speechless at what we were witnessing. Soon everyone joined in her joy and laughter and started dancing too.

After that day, I knew mom and daughter would be fine!! She would guide me and I would be her biggest fan and protector, as she lives against the odds and unaware of the world’s labels and limitations placed on her.

At 14 she’s still dancing and laughing.. giving anyone near her a reason to want to smile and laugh along with her.

~BBF

Non-Verbal Communication

Hubby and I took Buddy to town with us last week and we decided to stop at Denny’s to get lunch.

I cannot tell you how much I love doing this.  Mostly because 7 years ago, doing something so basic as going to lunch with Buddy was something that would cause me major anxiety, and quite honestly, we just wouldn’t do it.

This is one of the goals that I have to credit his care giver for.  She has been phenomenal, I think it’s because she is a foodie and takes Buddy to all of her favorite restaurants. And now he is a foodie too!

Anyway,  we took Buddy to lunch at Denny’s and when we got there, we had a 5 minute wait.  I kept whispering to him, “You’re doing great” “We just have to wait a few minutes” “I am so proud of you”.

We get seated and I sit on the outside of the booth and he is on the inside.  As we order our food and wait, I have my arm around him and I keep telling him those same statements.   I also turned on Spotify, because as we all know, music can be magic to an autistic.

Our food comes and Buddy eats every bite and a few of mine too.  Then as we wait for the check, he puts his arms around me and pulls me so tight to him that my glasses almost fall off my face.  As he kisses my cheek, I hear it, not with my ears, but with my heart.

My non-verbal son, just said “Thank you Mom, I love when you take me to lunch, and I love you!”   as he held me and kissed me again, I felt him say “You’re doing great, I am so proud of you!”

As we drove home and I pondered this wonderful experience, it occurred to me he does this every time I take him to lunch.  I think we need to do it more often!

 

~ASM

 

Why I Carry My Son

As a parent of a child with special needs. I was expecting the stares, the avoidances and the reassuring.
Today, I was told “I would not be carrying him”. “He can walk.” “Oh my back.” They exclaimed.
Sure, the person meant well, but is it something that should be said? Sure, I explained my son has special needs (I kind of have to). But I could tell the person was still kind of eh.
I carry my son at the age of 4 to keep him safe. Sure, it hurts my back eventually. But my number one priority is to keep him safe. If I put him down he will run away faster then I can catch him.
If I try to make him hold my hand he will force himself away or drop to his legs to get away.
My son is a runner. So I carry him to keep him safe. Sure, at times he rides in a cart or stroller. But in this situation it was easier to just carry him.
~ AMB