Sunday, 10:45 a.m., Hawaii time. Most families, or at least those that attend church, are there. I’m at home. Kaydan is upstairs playing with his Registered Behavioral Technician (RBT), Ms. J. For several months now, my wife and I have employed a “Sunday on/Sunday off” course of action, whereas if I go to chapel (Army church), she stays home with Kaydan. Then the next Sunday we switch. The truth is Kaydan’s behavior became so disruptive that we had to do something, thus the only real option was to utilize Sunday on/Sunday off. We even tried having his RBT join us at chapel but even that didn’t go well. One Sunday, when it came time to leave the playground at Ms. J’s behest, Kaydan did not want to leave and seemed to think that by taking off all of his clothes that would merit him staying! On another Sunday, he darted toward the front of chapel and wound up in the baptistery. Thankfully, it was dry! Getting him out however, was both challenging and embarrassing.
With that, it’s my Sunday off and so I begin my Blog–finally and officially! I’ve wanted to add a Blog to the website for a long time. Ironically, now that I have one it’s taken me more than a month to actually write a post. I have had so many things in my head that I wanted to write about but I blanked, for an entire month. I suppose in the attempt to tell our story my struggle is to be truthful and transparent and yet not seem like I am complaining or whining. Beyond that, I want to be encouraging. Frankly, some of the truths of being a special needs parent are not encouraging. Even today is not encouraging if I truly start with transparency. As the day began, I came downstairs to the sounds of clanking metal and Kaydan screaming and growling at his mother–my wife, Lori. She’s a beautiful woman, inside and out but more about her later. I could already feel the tension and frustration from both Kaydan and Lori. Kaydan was insistent that he play with Play-Dough and he apparently wanted mom to play with him. She however, was trying to make the usual Sunday fare of cinnamon rolls for breakfast. Nowhere near 100% awake, I sat down and seemingly calmed Kaydan’s energy as we made a Play-Dough pizza. Of course, the momentary tranquility was threatened as Kaydan insisted on putting the pizza in the oven with the cinnamon rolls that were now baking. I suggested that mom briefly place the pizza in the oven, make a ding sound, and take it out hopefully pacifying his wishes. It worked. The pizza came out beautifully. We cut it into slices and I finally found my way to the first cup of coffee.
The momentary peace did not last long however, as Kaydan moved on to the next thing and began his protest for participation and assistance. That was barely after 7:00 a.m. Being transparent, I’m not sure how many episodes happened between then and when Lori and our other two sons finally left for chapel, but there were several. And frankly, there usually are. Lori seemed to sum up the frustration and anxiety of the morning as she looked at me and asked, as she has many times, “Does he really not understand how to control his behavior and outbursts?” The frustration and desperation in her voice was not new. I’ve heard it over and over, and although the answer is obvious, it is always the same, and yet we hope that it will someday change. There are times that it seems that maybe there is a slight shift, but reality usually shows up sooner than later and we face the truth that we live with everyday.
I suppose I should pause for a bit of introduction and background. My name is Brad Lee, and I’ve been an Army Chaplain for over 22 years. More importantly, I’ve been married to my wife Lori, for 30 years. We have six beautiful children, Tara (and her husband Nathan), Shayna (and her husband Stephen), Marissa, Kavan, Kaydan, and Grayson. We are currently stationed in Hawaii, otherwise known as the Land of Aloha.
Our first four children are typical and up until Kaydan’s birth, we jokingly referred to ourselves as the perfect Alaska Chaplain family, which is where we were stationed and lived at the time of his birth. To say that Kaydan changed everything is truly an understatement. Don’t get me wrong, there are some wonderful things that have happened, but as I often say, he is as challenging as he is lovable.
Kaydan was born on a cold Alaska night, 27 January 2013. I should also mention that he was born in the car on the way to the hospital too–but you’ll have to read about that in the book! 😉 But in true Kaydan fashion, his birth was as dramatic as he often is. Lori and I had no idea he would be born with Down syndrome, nor did we know the world into which his diagnosis would thrust us. Almost 18 months ago, we also received a dual-diagnosis of autism. Sometimes it’s hard to know where Down syndrome ends and autism takes over, or where they simply overlap and look the same. At the end of the day however, Kaydan is simply my boy, and I love him dearly.
Thanks for reading and for your support on this journey. In true Army fashion the plan is to post blogs on the 1st and 15th. With that, I’ll be back on the 15th!
Brad