Friday, September 12, 2014

Dear Autism

Dear Autism,
(remind you I am talking to the most horrific disorder to man kind and not my boys. My boys are not autism.)
 I have been wanting to tell you a few things lately but time hasn't allowed me too. Nor have you really wanted me to. The things that would have flowed out of my mouth would have been nothing short of the most atrocious things that have ever heard.

I don't need to tell you how awful you have made my boys life do I? You already know. You are the master of sneaking into young toddlers and taking over their life. A toddler!?!?!?! Really? They are so young and innocent but you enter in like a thief in the night and leave the most precious children and their family with only the remains that you didn't want. I love everything that you left in both of my children. I wouldn't change them for the world but by gosh you have made their life and mine beyond hard. Its a kind of "hard" that only other autism families who have a child on the severe end know.

You made Trenton's life so extremely difficult this week. Why do you take away his ability to feel his body? WHY??? He has fought some huge, difficult battles the last few days because of you! He runs at full speed in hopes that the feeling in his legs will come back. His body has to be in constant movement because if it isn't he can't feel his floating body. I have watched him pace, run, fidget, and walk up and down the length of my house all week. Then the lack of feeling his body comes in full force and he takes off in a dead sprint running like a wild animal though my house tearing up and destroying everything in sight. He pulls himself up on our kitchen counter, pulls up on our stove, climbs into our fridge, runs across the kitchen table and jumps off and this repeats over and over and over for hours on end. I can't take my eyes off of him. Do you know that I tried for one hour today to put on my makeup. ONE HOUR!! It should have taken me 5 minutes. However, I was having to constantly run in the kitchen and pull him off the counter while turning the water facet off that he turned on in my kitchen.....I would walk to the bathroom and try it again and I would no longer step in to the bathroom and I would hear him on our computer stand jumping off.....or I would hear him tearing up my blinds in one of the rooms.....or I would hear water spilling all over the kitchen floor....or I would hear him pulling every item out of the closets and dumping it all over the house...or he would in the kitchen pantry getting everything out including cookies that he would just take and stomp on and crumble all over the house.....UGH!! I can't imagine having to move constantly like that in order to make my body feel normal. On top of trying to make his body feel normal he has been fighting off  that awful feeling in his whole entire body. He has just been trying to crawl out of his skin all week.  You sure do take a lot out of some little kids.

 One daily battle that is worse than any battle you can find in the history books is the Battle of Brushing Teeth. Due to the sensory problems you left Trenton he can't put a simple toothbrush in his mouth. If I want him to get the most basic brushing in, I have to lay on him and hold him down while he kicks, hits, screams, and cries until I stop. It doesn't stop then unfortunately.  Normally, he is left agitated for several minutes after...on some just simply puts him in an awful mood for the rest of the day

You not only steal a child's life......but you steal their whole life... and you steal a mother out of normal motherhood. I love being a mother more than anything.  The dream of living happily married in a white house with black shutters with a white picket fence didn't happen.  You know.....the picture perfect life that most Americans picture for themselves. I dreamed of being the mother who hosted family events......instead of dreading them because my severely autistic child destroys my house daily and is in no shape to host anyone.  I was going to be the mother who took her kids to sports events and practices...instead I take my kids to therapies...endless therapies. I was going to be the mother who had any and every friend that he wanted for a huge birthday party for him.....instead I will probably be having to beg every parent that I know with kids close to my children's age and pleading with them to bring their kids to my house for a party for my child. I was going to be the mom who had a tradition of eating out every Friday night where the kids wanted to.....instead we CAN"T eat out unless its in our van. As always, I could go on.

As being a former special education teacher, I totally believe in ending everything on a good note. With that said, if it wasn't for you Autism, I wouldn't cherish the beautiful sound of my children's voices when I hear them. They are so sweet and beautiful and nothing sounds better then their voice. Its few and far between when I hear Trenton's voice but when I do I am left speechless because its a beautiful sound. I am a lot more thankful for good mental and physical health then I ever would have been. I am appreciative beyond belief of the most basic simple things which are far too many to discuss. However, the simple things I am talking about is eye contact for a few seconds, a night with sleep, and a picture where I capture a smile!
Thank you Autism for what you left! I love everything about Trenton and Andrew. You sure do make our life much more difficult but  you sure didn't know what kind of Mom you were dealing with when you chose my boys! I am a fighter and we will gain back what you took from us!

A Warrior Mom

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