Imagine being Maxwell, unable to speak…or communicate, unable to tell your family you hurt, unable to sign, unable to point. Your head aches with the constant headbanging you do in frustration. Your hand hurts from biting it nonstop. You develop gut ulcers in your frustration. You are stuck. Stuck inside yourself. No matter how many therapists and tests and doctor offices you go to, no one can seem to help you. You grow stronger every day and your parents feel your aggression and self injury is becoming so dangerous to both yourself and the family. Everyday you pray someone will help you. Fix you.
Now imagine being a parent of Maxwell, fighting until you feel like you have no fight left. Finally after years of fighting, getting the help your son needs, round the clock intensive behavior group home. Imagine taking your 8 year old son to a place 2 and a half hours away and bargaining with God, to make a change, fix him, help him, make him better so that you do not have to be away from this precious child you brought into the world. I am exhausted. I have literally fought for years with insurance companies to help me get my son help. People thought I was nuts. What do you mean you can’t go to dinner with your family?? Take your kid to a store… take them on various autism outings in the area? Why not? Well if you’d met Max, you’d understand. You see, its not as simple as OT 3x a week and Speech 5 days a week …ABA all the time ..and bam, its magic, he is better. My son is not rainman, my son is not an aspie, my son is severely autistic and injures himself all day. This has taken away alot from my other children….2 of the other 3 are also on the spectrum. I hurt, I am very sad. As a parent, what you want is your children to be happy and safe and thriving..none of which he is. When you are faced with a decision, you question is it right? Will he be safe? Who will hug him? Who will kiss his freckles? Who will have the patience I have with him? In every therapist that has ever worked with Max, the majority have never worked with anyone as severe as Max. Their words not mine. By making this difficult decision, I am giving my other children a chance to grow and for Max to get round the clock reinforcement that as his mother, I am unable to provide. I am still his momma, and will always be his momma. My heart is aching bad today. He leaves Saturday.
Climbing the rock wall of life, barefoot with baby oil…
Praying for chalk as not to slip.