I am not sure I would want to be in your head, even for a day. I am sure it is as if you are riding a roller coaster and you have moments, days, weeks, where the ride is nice and smooth and you don't even have to really hang on and can enjoy yourself. But then, all of the sudden we have the ups and downs. You climb slowly, over a period of a few days where we start to see changes in sleep patterns, inability to concentrate, struggle to use your language (in any form), and difficulties with transitions. There are other signs such as you forgetting how to use the bathroom but the list would be way to long to put here for you so these are the main symptoms that signal to others something is just not right.
These signs are your only form a communication and the hard part is that you have no control over them. You are unable to coherently express any of these emotions as they continue to build and your body fights hard against them. You want to be good, you want to make others happy, you want to succeed, but there is something inside of you fighting back and making your life a living hell, and plain and simple wearing you down to the point of exhaustion. Then, come on the final day (the peak of the uphill climb that a roller coaster must take), you emotional just break down. I can see the circles around your eyes and you can no longer fight what is happening internally with how you want to act externally. There is unexplained crying, falling to the floor, more crying, some sobbing, running around like a chicken with your head cut off, noncompliance, self-injurious behavior, fear, anger, and just a rush of emotions and adrenaline that you have absolutely no control over. Following this going on for a few hours, you then sleep for three to four hours.
After this long nap though you wake up as if nothing has happened the last few days. It is like the roller coaster comes to an end, you get off the ride, maybe one day will talk about it a little, but otherwise its as if it is no big deal. How do you do this? How do you then wake up, smile, and suddenly become my happy child again? What is even more amazing then you bouncing back and continuing on with your life is that you make up for all your lost time. You are extremely happy and find that giggle deep within you that lights up the room. How are you such a resilient little boy?
Many of those close to us know that you have many diagnosis which include (but most likely not limited to) Early Onset Childhood Bipolar Disorder, Mood Disorder, Severe speech and language delay, Apraxia, Gross and fine motor development delays, ADHD, Meth exposure, PDD, and recently we added to the list a chromosome abnormality - you seem to have an extra piece on your 1st chromosome so you technically have a genetic disorder for what its worth.
With all this though, you are one KICK ASS KID. The cycling I described above is a fact of life and something we are learning to work through. With your balance of medication and the great psychiatrist we have in Virginia, not to mention a wonderful support system, the cycles happen further apart and you recover much faster afterwards. None of the labels listed above matter, none of them describe who you are, what you live for, and who you will be in the future. None of those labels describe your laugher, the spark in your eyes, your manipulation, or your sense of empathy and compassion. Not a single label can describe your smile, your passion for music, or your ability to light up a room - trust me, I have searched for all of these characteristics as symptoms and they just don't exist! They are simply who you are, your personality, and your sense of self. The make you the unique and special boy that you are today and help shape the young man you will be tomorrow.
I cannot stop the roller coaster once it starts but I can ride in the seat next to you. And let me tell you a little secret, I hate roller coasters! I have always been scared to death to let my feet leave the ground but I can't imagine your fear to go through it alone. So, We will buckle up because it will be a bumpy ride but we will make it and we will both grow, develop, and survive. We will both survive! And to tell you the truth, there may just be better things on the other side of the hill.
We just came through one of these rides. It ended on Monday night with night terrors numerous times, and lots of wake up calls for me from your bedroom (the power of your device for communication). But when you woke up on Tuesday morning you greeted me with a smile and and a laugh as you bounced around on your bed saying "Monkey." We fell right into our routine and you haven't missed a beat since. You have had an amazing week at school, wonderful ice skating and speech sessions, and are looking forward to a great weekend.
I am so very proud of you and cannot wait to see what your future holds.
Keep on Truckin
Love
Mom
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