Sunday, October 11, 2015

The 2 am wake up call...

Its not a big secret that caregivers who have loved ones with special needs don't always get the best night's sleep and most of the time we are the ones who look like extras from the Walking Dead. We try to ramble through our day with our head still in the game, thanks in part to large quantities of caffeine. Its no wonder that most of us are either on some sort of anti depressant and or sleep aid just to get those precious moments of a snoozefest.

For me, I have a child, that thanks to a seizure disorder related to everything else that is going on with him, doesn't sleep a full night. The medication that we are currently trying out, I think amps him up to this level of hyperactivity that rivals the Energizer Bunny in the very early morning hours. As we are still in the infancy of this disorder and the medications that work and ones that don't, the lack of sleep is just one more thing to be added. Before we started on this new journey, his sleep was still very erratic, thanks to those seizures he was having in his sleep,but now we have reached a whole new level of middle of the night hyperactivity.

Maybe because I am so tired and the thought of me trying to drag myself to work barely conscious, my 2 am wake up call made me a little melancholy. I sat at the edge of my son's bed, watching flap away and vibrate, it made me realize just how much this little person has going on in his life and here I am worried about me and my lack of sleep. Don't get me wrong, my well being is just as important, but as an adult, I can handle and navigate what is going to be thrown at me, while he can't.

He can't for so many reasons other than being a child. Most children are able to communicate what is bothering them, what makes them happy or sad, angry or upset, but a non verbal child, who's senses are on overload cannot. In my tired haze, I become more aware of just want all of this means for this child, at this current moment in time. He is a child that can't relax. He can't tell his brain to start preparing his body for shut down mode, as his mind is preoccupied with other things, like his sensory issues. In a way its like a radio or TV that is stuck on the same channel and sometimes there is a break in the signal(seizures) and we go back to our regularly scheduled program of verbal and physical stimming.

Sadly a 2 am wake up call is a wake call for so many things. Just as I am physically exhausted. my mind as well is thinking about things. Important things. Revelations about how my child's life actually is and the sad part is, is there are very people out there, who will ever have the pleasure of what these 2 am wake up calls are actually like. Just as I am thinking about him, I am also thinking about everything I have to do as a parent to make sure this child gets the proper services he needs in order to help him deal with all of these aspects of his life. That worry that maybe I will not succeed in my job as  parent to get all of those things.

I type this as I am finishing up my 5th cup of Coffee, trying desperately to get my thoughts down. as I know I am not the only parent that has sat in this chair and drank that much coffee having the same feelings I am expressing. I know this will not be the only 2 am wake up call I am going to have, there will be others. And those will too will come in a haze of exhaustion and copious amounts of coffee. Its called being a parent. Being a parent of a special needs child.

For now, I must go and make my 6th cup of coffee, drown my eyeballs in it, take all that I have  discussed and try to get to work.