On July 29th 2013, my world changed, it possibly began…….again. Preston my son with severe autism was placed into a residential treatment facility for children with severe and aggressive autism. I was relieved, scared, and emotionally and physically depleted. Autism had drained my soul to the darkest of places. I felt alone, empty, numb, and quite honestly, I was over our life that had slowly crept up into the region of Hell.
Fast forward to March 11th 2015— 20 months and 10 days……
I just got back from a vacation. A vacation mostly free from worries on whether or not my son was okay with my mom and his grandparents. I have NEVER gone away for a weekend without getting utterly drunk and bawling while sobbing and trying my best to explain to whoever would listen about my horrible life. The despair, the challenges, the negative prospects of the future. The incoherent babblings of my feelings of doom. Yet i went away for FIVE WHOLE DAYS and I didn’t cry, not once. I got teary eyed when I noticed a special needs girl in the ocean. She fell and the family laughed and so did she. At that very moment I wished I had the capacity to have my son with me, but I didn’t cry. I prayed. I prayed that the family had a wonderful day and enjoyed the time they were having. I prayed for the girl to have a safe and healthy life, for her to enjoy whatever it was that made her happy and that the family had the least amount of stress possible. I prayed that at that moment my son was happy, enjoying whatever it was that makes him happy. I prayed for my guilt to please go away for enjoying such a wonderful trip. I prayed for all of my “extreme friends” who still struggle daily, for a multitude of reasons with their severely affected children. I prayed for Kelli, and her family and that they are adjusting okay to the life that they have had to accept. I asked God to help me realise and accept that I deserved the beautiful vacation. I guess it worked because I enjoyed the sun, the family,and the friends that I was surrounded by.
It is hard at times to recall how awful my life was. Just yesterday I was stopped by the same train tracks that I had thought so many times I wanted to run Preston and I into. It seems like a lifetime ago, and yet some days it seems like yesterday.
I miss my son. I have cried most of today with a plethora of mixed emotions. They run deep and they are hard to get a grip on at times. Today is one of those days. Maybe its the sun. The first glimmer of spring were good days for us. I miss having the bike ready when Preston would get off the bus. I miss his smell, his laugh, his sound. I miss Chad too, but it’s weird how I have accepted his passing and feel mostly at peace with it. However, with Preston it is so different. I still, however awful as this may sound, feel that if he had passed away it would be easier. The constant worrying over him is tough. I will never fully accept my son’s condition. I will die with a broken heart and a fractured soul. I do pray that God takes Preston before me. I can’t fathom his living without me to do my best to protect him. These are the thoughts that make the tears flow and my nights into horrific recurring nightmares that no therapist could ever fix. No amount of drugs, no amount of wine will ever take these haunting thoughts that plague my racing mind away. They are there. Some days I can tuck them away some days I can’t. I’ve been struggling lately and I don’t know why. I think it is the change of seasons. As I stated he loves the warm weather.
So Here I am posting my happy photos on social media. I no longer complain about the exhaustion, fatigue, and constant struggles associated with living with a child who is impaired and beats the shit out of you. The pictures aren’t fake. I am content, safe, happy, and mostly healthy. I just turned 40 and for the first time in as long as I can recall, I’m the most stable i’ve ever been, so is Preston. I have a bf who treats me well. He has two children that I am falling in love with as much as I am with him. I am blessed beyond words with the friends and family and supporters that I have. However, underneath the smiles, there lies a former abused mom who misses her son so bad that it literally kills her. Every single day. I want him in my daily life.
I just got off the phone from the supervisor of his home and care. Here is the skinny:
December January February
Physical Aggression 43% 11% 6%
Property Destruction 45% 4% 6%
PICA 17% 6% 6%
Disrobing 20% 23% 0%
Fecal Smearing 4% 4% 0%
These are the percentages of incidences that he has had since he was placed at the new facility in November. Not only does he go on community outings, but he is no longer abused by other clients. He earns an allowance and his favorite place to shop is at 5 below. His favorite outings are anything to do with water activities and when he is at his “home”, he enjoys getting tickled by staff and making them act like various animals. He still enjoys making me act like a monkey and a chicken, particularly in public. I suppose some things will never change… ;) I have been told that as of right now, his placement is the perfect environment for him. He should not be placed in any more of a least restrictive environment than where he is presently. He should also not be confined to a more restrictive environment. Preston is thriving in every aspect of his life, from what can be measured. Of course only God knows his psychological and emotional state from all of the trauma, but from what I can tell as his momma…. my “baby” is doing pretty damn good. I couldn’t be more proud of my booty boy.
I do not know when or if he will ever be able to come home. I try my best to bury those questions and just live day to day and enjoy the freedom that I have. I enjoy the freedom from being abused by Preston, and the freedom of the stress and trauma. I like posting my food on social media and posting my check in’s like “Joe Schmo”. It’s so cool that a friend can call and say hey wanna meet for dinner, and I hesitate (although not as much as i did at first) and I think, “hmmmm do i feel like going to dinner”? It is still a tad crazy to me that i have the option to say yes or no. It’s InSain that I am no longer a prisoner of autism. It feels good. So as many times as I cry myself to sleep at night…..I just continue to carry on. I pray and thank God for leading me into the life that he has given me. I am moving on to the next phase of my life. I am almost done with school and can finally decide what I will be when I grow up, besides my son’s punching bag, rest area, and monkey robot chicken impersonating mom.
I always say I couldn’t have done this without you. It is true. Whether we are strangers, friends, frenemies, family, acquaintances, or neighbors….I needed you. For one reason or another, and I thank you. My son thanks you. We are stable. happy. healthy. Life
God bless you all and thank you for helping me in this journey. All my love and sincerest blessings to you and yours. No matter the struggles and challenges you face. We all have them. You and only YOU can work really hard to get to where you need to be. Do what makes you happy. You deserve it…… we all do. :)
Lisa and Preston InSain but thriving….:)