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

Advertisements
Advocacy, Special Needs, Special Needs Parenting

What Kind of Parent Medicates Their Child?!

Whoop whoop!!! Right here, this mom! Now, I know that this is a controversial topic to many but, I have no shame, and here is why.

Of course we have to back it up a bit because there was a point in time when Kaydence was between two and three where I felt a great deal of guilt for even considering medicating my child. She was so young. It started out with sleep. Kaydence was only sleeping on average two to three hours per night. At the time, she was connected to a feeding pump close to 24 hours a day. So, if she was up. I was up. I went months, constantly getting up in the middle of the night. (Not to mention I had a new baby on my hands in the midst of this) She would tangle her tubing all around her body/neck. It was a constant battle keeping her safe. This led to extreme anxiety for me. I felt like I had to be constantly watching the video monitor.

And then. My breaking point. We went in for her check up at the Department of Developmental and Behavioral Pediatrics. They did a new evaluation to test where Kaydence was cognitively. I knew what was coming but it was still hard to hear, she had made no progress, and actually regressed over the last 8 months. I thought, how could this be?! She was in intense therapies, seeing 6 therapists a week! Her doctor explained that it was probably directly linked with her lack of sleep and intense ADHD. Her body never stopped. Even in her sleep. Even when she was exhausted her body was in a manic state. I cried and begged for help. We started some doses of medication to help with sleep at night time. First we tried melatonin, which I did not feel so bad about. But when that failed we had to move on to Clonidine, and eventually down the line added Trazodone.

Finally! Her sleep was under control and this momma was able to get the sleep I had been longing for! But of course, one thing leads to another and It became time to address her ADHD we started a dose of tenex, and this was a game changer. She was able to sit still for the first time in 2 years! And then, over the years we added Risperidone for aggression and behaviors, and Lexapro for anxiety, and even more recently a Clonidine patch to further assist with behaviors.

I lived feeling shameful for a long time. I was that mom, the mom who could not handle her kid. The mom that was not strong enough or tough enough to get through it without medication. I felt like I should of tried harder, I should of tried every possible natural supplement.

But! I am here to tell you, you should NEVER feel that way. Do not let the stigmas around medication and mental health bring you down! Stand strong and be confident in the fact that you and only you know your child best. You are and always will be your child’s best advocate. If I sat here and took everyone’s opinion to heart, I would be suffering, but most of all, my child would be suffering. She deserves the best, and while some will say that medicating her is not the best I beg to differ. Without her medication she will not sleep but maybe two hours. She would be unable to control her body, her emotions, and behaviors. Her behaviors include self injury. So, I will stand tall and shout to the mountain tops. I am NOT ashamed. I am NOT a bad mother. I will NOT let others opinions bring me down. I will stand strong and continue to advocate for my child.

Love,

A relatively well rested special needs momma!

-Brooke