Trenton's Story

 August 2, 2012, the day that TOTALLY changed our lives forever. That was the day that I walked out of a St. Louis developmental pediatrician's office with a piece of paper. The kind of paper that no parents ever wants to hold. The paper that said my first born son had autism. One thin piece of black and white paper simply stated what  my son needed to have the best functional life possible...

I remember it all so clearly. I remember the team of doctors and therapist that filled that small doctors office. I remember exactly where I sat, where Trenton's dad sat, where the doctors and therapist stood, and I remember exactly what Trenton did during that appointment and what he had on. I remember the room spinning seconds after Dr. Twyman said he had autism.  I remember the long walk to our car afterwards, the long drive back home, and silence that filled the car.

Why is the world still going on??? I kept thinking.

Why is everyone else going about their life?? I kept asking.

Why does my world stop? Why does my son have autism? Why is life going on as if nothing happened? I kept shouting in my head.

I remember the walk into my parents house to pick up Andrew after we got back. I remember where my parents were sitting as I walked in. I remember everything about the looks on their faces. It is as if it was all slow motion.

August 2, 2021, a day I will NEVER forget.

Fast forward to where my precious first born is now.....well as many of you know...he is in a residential treatment center. I tried so hard to not have to take that step. For six years after his diagnosis, I researched and got him into therapies...we moved to another state for better help...I quit working and focused on helping him and being involved in his therapies while I was barely holding on in life. I was simply hanging by one small thread for six years. I clung to that thread for dear life because I could see and I knew exactly where we could potentially head to if we were not careful....

He made some huge gains in those six years between his diagnosis and the day I placed him in residential but the gains he made were soon hidden by his extreme aggression and self injurious behaviors that over took his body. Research often claims that around the age of seven, one with autism can generally get better or they can get much worse. Our brains go through a big developmental stage around this age. Unfortunately, Trenton's brain couldn't handle things and he started to regress even more.

Not every diagnosis of autism is like the character, " Young Sheldon". My son can not even be compared to him. 

Trenton's life has been nothing but therapy. Speech therapy. Occupational therapy. Developmental therapy. ABA therapy. He didn't have a childhood....his childhood was in therapy 40 hours a week. Time was precious....we had to live in therapy in order to help him be able to live a functional life. We didn't have a day to spare. Even though we worked HARD for YEARS, we still couldn't fight past the worst of autism...he still ended up in residential at the age of eight.

Trenton's autism is non-verbal and non-communicable. He can not tell anyone how he is feeling. He can not tell anyone where he hurts. He can not tell anyone when he is hungry. HE CAN NOT TELL  ANYONE WHAT HE WANTS OR WHAT IS WRONG! His brain does not allow him to.

Trenton's autism is aggression and self-injurious behaviors. He hits. He kicks. He bites. He punches himself in the head. He slaps himself in the head. He throws himself into walls and on to floors. He will do this to himself and will do it to other people. Trenton elopes. Trenton is unsafe to be around and unsafe to keep at home. Sure, he could be kept at home if I had a rotating door of help 24/7 with several people  at all times...

Trenton's autism has left holes in my walls, broken TV's, broken glass doors, and much much more. He has left himself with a bruised body. He has left me with a bloodshot eye, bites all over my body, bruises, and cuts. 

Trenton's autonomic nervous system is in flight or fight response 24/7. His body does not give him a break. Within his autonomic nervous system is the sympathetic division which is how our bodies prepare us for stress and this is where he is in flight or fight 24/7 because his body can not handle anything......which is why we have so many behaviors.  Just think of a time where you were in flight or fight....a time where you had no control...Trenton is in this every single minute of his life.

Trenton's autism is sleepless nights. His body does not sleep well. For years, I did not sleep with him. I didn't start getting sleep until he went to residential. For eight years I functioned on 2-3 hours of sleep in a 24 hour period.

Trenton's autism doesn't know danger. He will run away and not look behind him or in front of him.

Trenton's autism has severe sensory challenges and that brings big issues. He can't brush his teeth. So he has to be put to sleep about once a year for major dental work.

Trenton's autism has left me helpless, full of guilt, full of grief, depressed, and feeling hopeless. However, I have most definitely became a fighter for him. I not only am his mother but I am his advocate. Who will advocate for him if I don't? 

For years I have cried myself to sleep. One of the worst pains in life is not being able to help your child..one of the worst pains in life is watching your child suffer each day and knowing he will suffer each day of his life. One of the worst pains in life is not being able to keep your child home with you because he simply can't live with you because of his high needs. A mother is suppose to raise her children under her roof and care for them, nurture them, teach them...but I can't. Trenton was robbed of a functional life. 

Between now and the moment I take my last breath, I will always fight for him. I will always advocate for him. I will walk by his side doing WHATEVER I can to help him. I will constantly try to find something to help his life be more meaningful and more functional.

I know he will never live on his own. I know he will never talk. I know he will always have dangerous and unsafe behaviors. I know he will never have what most people take for granted....a life free of trials and suffering.

So how did we get here? I often ask. How did this happen? We worked so hard. I read up on applied behavior therapy before I even got my masters in it and trained people myself to come into my home to work with him. I used to drive two hours one way for therapy. I did everything that was possible but we still ended up with one of the severe cases of autism.

Trenton will be 11 this summer.  I had no idea eleven years ago how my life was really about to change.  Because of Trenton, I am a better person. I appreciate life so much more and most importantly I appreciate a healthy body and healthy mind. It is something that I took for granted for 29 years before God gave me Trenton.

I often torture myself and wonder what it would be like to have a conversation with Trenton. I wonder if he knows "love" and knows what it means when I say, I love you. I wonder what he thinks about. I wonder if he knows how much I have done for him and how hard I tried my best to prevent residential. I wonder so much.

I will never watch Trenton graduate and go on to college or get a job. I will never watch him drive away in a car for the first time. I will never hear  him talking about his first girlfriend or have friends over.  I will never watch him get married or watch him have kids of his own. 

Instead, I will always be fighting the system. I will always be begging for group homes to take him and worrying if he is being treated properly by staff. I will always be wiping his bottom after he goes to the bathroom. I will always wonder what he is crying about. I will always hurt when he is hurting himself. I will always watch him play his baby toys even when he is a grown man. I will have to pay a lawyer to get guardianship over him when he is 18. I have a forever child.

As hard as it is on me, I know it is even harder on him. He is one tough little guy. I am so proud of him and so proud to be his mom. I am so blessed God gave him to me.

So, as the world thinks about autism during Autism Awareness Month, I think about autism every second of my life. I don't raise awareness just for one month or one day, I do it every day of my life. We never escape it. IT IS OUR LIFE. HIS LIFE IS MY LIFE.

Trenton James, I LOVE YOU SO MUCH!!! I am here by your side helping you every single day of our time on this Earth. Keep working hard Trenton! I am beyond proud of you and so proud to call you my son!