Wednesday. Hump day as many refer to it. In our special needs world however, it is just like any other day. In fact, halfway to the weekend simply means that Saturday and Sunday are coming, which requires constant availability and engagement. There is no break. There is no time off. Anything that we plan is trumped by the question, “What about Kaydan?”
In previous blog posts I have shared insights of God’s grace and love in ways that help me put our special needs journey into perspective. And for those I am truly thankful. Today however, I want to give you a glimpse of a world that does not always have a silver lining, or some beautifully wrapped spiritual insight. I want to share with you reality as we experience it, and that reality happens on any given Wednesday, or Monday, or frankly any day, and at any time.
For many special needs children routine is the key to success. Ensuring consistency in the routine can help to gain compliance in transitions and mitigate what can otherwise result in gargantuan meltdowns. For Kaydan however, consistency is sometimes irrelevant. Despite our efforts to take the same steps and ensure the same elements of routine on a daily basis, he has a way of subverting those steps and seemingly inventing new requirements. For us, or so it would seem, consistent inconsistency is the norm! The truth is, we never know what will diverge Kaydan into a fit of rage or blood-curdling vocalizations that I am certain are heard well beyond our walls. Just last year we lost two televisions to moments that quickly went sideways with Kaydan. I should mention with the first television that he did manage to hurl a sippy cup with a well placed near center of mass shot!
This unpredictability is highlighted at school drop off. On any given day, Wednesday or otherwise, Kaydan will undo his seatbelt, put on his mask, grab his backpack, and almost with nonchalance hop out of the van. As a special education student, there is always an Applied Behavioral Analysis (ABA) Registered Behavioral Technician (RBT) awaiting him to assist in the transition, and oftentimes two. We also have a special drop off location that separates us somewhat from the typical students being dropped off. Inevitably however, and completely unpredictably, there are times when Kaydan refuses to get out of the vehicle, the reasons for which baffle us every time.
Keep in mind, Kaydan is currently eight years old and weighs almost 65 pounds. Physically removing him, which occasionally becomes necessary, is not an easy feat. On those occasions he becomes almost octopus-like, his limbs being able to create suction on anything and everything within reach. Furthermore, the RBT’s prefer us to let Kaydan make the decision on his own to get out of the van. There have been days that this process has taken more than 30 minutes. I have often wondered what this scene looks like for the other parents dropping their children off, most of which exit their vehicles without any problem, issue, or need for assistance. I have to admit there are many days I am jealous of the ease with which they seemingly, if not even mindlessly, do this process day after day without incident.
On any given Wednesday, there we sit. Waiting. Hoping. Praying. I wish I could tell you I am truly as patient as I am sometimes forced to appear. More often than not, my internal dialogue is one of angst, frustration, and even hopelessness at times. Lori and I both have stood on the curb watching as Kaydan barricades himself behind the second and third rows in the van. The RBT’s coax and bargain with him to no avail. They use toys. The magic box full of various trinkets and items. On more than one occasion, three or four of us dance together on the curb in an effort to invite Kaydan to join us. Nothing. And then all of a sudden, Kaydan decides it is time to get out of the van. On other days, if we can manage to nudge (truthfully muscle) him out of the van, one of us can restrain him while the other shuts the door.
Once out of the van, the battle is often not over yet. Kaydan often employs what is commonly referred to in the special needs world as the “flop and drop” behavior. By this point the RBT’s usually take while Lori and I retreat to the van and attempt to make our getaway. There is a callousness however, that is necessary to walk away. I am reminded of this every day as I watch the parents of typical children dropping their kids off. Moms and dads alike, wave as their student gets out of the vehicle. They then seem to linger watching to ensure that their child is safely headed in the right direction toward their class.
On any given day however, ours is more of an escape as Kaydan lays on the sidewalk crying as he sometimes pleads, “No, Mom mom, no!” Other days he screams angrily as the RBT’s try to calm him and eventually direct him to class. Somedays I simply drive away. Other days I am drawn to watch the ugly scene and wonder what that must be like for my son in that moment. What is he thinking? Does he feel like I/we abandoned him? Does he understand that this is the best thing for him? Does he know that we love him? But for us, this is just any given Wednesday.
Thanks for your continued support. I’ll be back on the 1st.
Brad