Advocacy, Special Needs, Special Needs Parenting

Exhaustion Does Not do it Justice

A day in the life of Kaydence is simply exhausting. To say the least.

Her energy levels are that of the Energizer bunny. ( I know, I know, Every parent compares their kid to the energizer bunny right?) Well, let me just say, my analogy is legitimate, and don’t worry. I will tell you why.

My child can run on little to no sleep, and when she is sleep deprived the intensity of her energy, and behaviors amplify. At times, it is terrifying. She becomes physically aggressive towards others and herself. Her body will simply not stop. She is on a concoction of medications to help manage this, but there are times that it is just not enough.

As she surpassed the age of one, it was clear that she was showing autistic behaviors, but at the time I just chalked it all up to her diagnosis of Cornelia de Lange Syndrome. There are in fact a lot of similarities when it comes to sensory issues, and speech and language delay etc…

By the age of three, I was begging for answers….and help. My child was too exhausting for me to keep up with. She was literally all over the place and was not able to communicate in the least bit. Her frustrations were growing, her behaviors were increasing in duration and intensity. I was at a loss. And then, finally, a doctor mentioned Autism and said that she believed that Kaydence fell within the spectrum. At first it was a hard pill to swallow. Another Diagnosis? Another test?

I went home feeling defeated. But, I started doing my research. I started reading into the diagnosis, and different therapies that were effective. Ways that these kids were implementing functional communication.

She was tested and rather quickly and was diagnosed on the ”low functioning” end of the spectrum. Another low blow. But I left that appointment feeling ready. Ready to do my research, ready to joint online forums and facebook groups, and ready to educate myself. It gave me hope. I started reading into ABA therapy, looking into every possible sensory toy on the market, and all of the private schools for kids on the spectrum.

This is when it clicked. Another diagnosis was a blessing in disguise. It has opened the doors to, and maintained access to all of the services that Kaydence needs. She is excelling at her new full time ABA therapy center. She is leaning to functionally communicate. She is coming into her own. Things I never thought possible are current goals! Using PECS to communicate, and even potty training!!!

The last 7 years of my life have been dedicated to researching, and educating myself of my child’s diagnosis’s, and let me tell you, her diagnosis list goes on…and on…and….you get the point. But, I knew this is what I needed to do to be the BEST advocate I could possibly be for her. I needed to do this so that I could help educate other that are going though what we have been through. I had to become the expert on my child’s diagnosis’.

It led me to a life of opening my heart and soul to the special needs community. I work in ABA therapy as a Person Centered coach, I am an adult foster care provider and have an adult on the spectrum who lives with us full time, and I am a special education advocate. I used to tell everything as Kaydence’s story, but this is my story too. It is OUR story.

This may be Kaydence, but his is our story. This is our Journey. This video includes her using her PECS, and shows the wild child within. This is a good day. 💜 She was definitely all over the place but her engagement in behaviors was on the low end today. Enjoy

Join 172 other subscribers

Leave a Reply