Monday, June 11, 2018

For The First Time In A Long Time

I often reflect back to the person I was before I became a mother to a child with severe autism. In many ways, I have changed for the better. I live each life appreciating the small things and thankful for almost everything that I took for granted before Trenton was born.

However, I have to admit, that I really miss some parts of my previous life. You know....the carefree part. I thought that I had worries before. Wow!! I was so wrong! The big things and the big deals are NOTHING compared to my life now.

As Trenton gets older, we are found trapped in our house even more than ever. He snaps and becomes very aggressive toward others and himself without any warnings. He is a flight risk. He doesn't understand danger. He can't express himself. He is very aggressive towards me, Andrew, and anyone else that gets in his way when he goes into a mental breakdown. The time and energy it takes to raise him sucks all the life out of me daily. 99% of my days I am hanging on by a thread.

I sit here and type out on my computer how awful it is to have your own child beat you, scratch you, pull your hair, attack you when you aren't paying attention, scream at the top of his lungs for hours, hit himself in the head over and over, hit his brother, break glass, break anything that he can get a hold of, scream because he has something to say but can't say it, watch your son be awake all night because his body won't let him sleep, etc, etc, etc......but it is just words. It doens't mean anything unless you are the one living it. One can't fathom it unless it happens to you.

I take care of my boys 24/7. It is a lot of pressure. It is a lot of stress. I simply can't put into words what it does to the caretaker. I can't have a life. I can't do anything. I don't even have enough time and energy for my children....let alone myself.....so there is really no time for friends, relationships, or to do anything to simply get away. To be frank....IT SUCKS! I miss having friends. I miss having relationships. I miss the old me! However, God gave me a different life now and I have to accept that and live how I need to.

Last Saturday I did something that I haven't done in a long time! I did something that I have a LOVE for! I did something that I haven't done since I had Trenton. I did something for myself and for my other son, Andrew. We went to a St. Louis Cardinal baseball game.
Deep down, I am a tomboy at heart. I love sports. One of my favorite things to do is to watch the Cardinals and to go to their games. Oh how I have missed going to baseball games! I used to go to at least one a year along with many other sporting events. That changed dramatically when Trenton was born....no time, energy, or money to do anything besides taking care of my child who needs 24/7 care.

So, for the first time since severe autism entered my world almost eight years ago, I treated myself to something I love.....I was a "normal" person for 12 hours and I ENJOYED EVERY MINUTE OF IT!! In that twelve hours, nothing changed. I came home and walked into my house to find Trenton in an aggressive meltdown......and I lost it! It was so nice for 12 hours to enjoy myself and to walk back into my house to my son hitting everyone, turning chairs over, and in a complete meltdown.....well....it was terrible. No words! It was just terrible!

I am not sure when I will ever play a normal person role again. I am not sure when I will ever do anything else for myself again...but I really enjoyed it! Believe it or not, I do NOT feel guilty. I believe I needed it more than most people. Andrew needed it more than most siblings. So we took advantage and had a fabulous day!!! To top it off, we watched our St. Louis Cardinals WIN!!!

A special thanks to my parents who watched Trenton so Andrew and I could escape life and be normal! We had a glimpse of my old life together, the life I dreamed about for my children.





Wednesday, June 6, 2018

Aggressive Autism

This is a picture of Trenton from August 2, 2012. The day he received an autism diagnosis. I will never forget that day.
I remember thinking going into his appointment that I wanted him dressed cute. I love my boys in polos and shorts. I am not sure why I wanted him to look extra cute that day....it is not like the cuteness would prevent a diagnosis. One way or the other, I made sure he looked cute for his big day at the doctor.

I never would have never thought then that I would find myself having to make some of the decisions I have been lately about Trenton. The doctor who diagnosed Trenton also told me on one of his visits, " I think he is going to be very high functioning." In six years we have went from high functioning to severe to very severe with a few other diagnosis added on.

YOU JUST NEVER KNOW HOW FAST YOUR LIFE CAN CHANGE!

I reported last Friday that Trenton was doing well on his medicines and it appeared that the hospitalization was one of the best decisions I had ever made.  Again, things can quickly change. I do believe Trenton is on ONE of the right medicines. However, he needs more. Trenton had about one good day and he keeps going downhill again. I have even started giving him CBD oils and they are doing nothing for him. If anything, he has regressed since giving them to him. (I have a brother who is a pharmacist and he said the oils should show signs of helping in two days if they are going to help.)

The cute little boy in the picture above simply snaps and gets so physically aggressive that I can barely protect myself and Andrew anymore. His therapist have seen it and still continue to deal with it on a daily basis. There is no antecedent which means it is simply the "DMDD" diagnosis or childhood bipolar that is making him do this.

I have had more glass broke in my house the past four days....scissors thrown at me.....mugs full of hot coffee thrown at my head, bit, scratched, attacked, hair pulled out, picture frames broken, running into walls, running head into walls, kicking everything over, throwing computer down, hitting and attacking Andrew, not sleeping...the list goes on and on.
No one could ever begin to imagine what we live like. We have no choice......we have no choice!

It's so bad that the words no one wants to hear..."residential facility treatment center" may be in his future if we can't get this behavior under control. It is simply because no one can keep him safe. No one can keep others around him safe and he is only going to get bigger. Sadly, some individuals with severe autism have severe aggression....it appears my son is one of them and this is around the age it normally begins.

We have a doctor appointment next week. Until then, Andrew and I continue to live on eggshells trapped in our own house because it is simply too dangerous to take Trenton out in public. We have  a rough rocky future ahead of us and no one needs prayers more than T-man!
I know in my heart he can't help what he is doing. His brain needs some major help!!! God please answer our prayers!


Sunday, June 3, 2018

Andrew- My Glass Baby

Have you ever heard of a glass child?

A glass child is a child growing up in a home where the another child takes up the majority of the parents time and energy.
Many siblings who grow up with a sibling with special needs are called glass children. There is absolutely no way around it. When you have a child with severe classic autism, it is common sense that that child is going to take up a huge amount of your time.

Andrew has high functioning autism but he is also a glass child.

I often get asked, "How is Andrew handling Trenton these days?" That is a common and fair question to ask.
I simply answer, "Not very good."

When Trenton has his aggressive attacks and goes into an uncontrollable meltdown, they can last for a very long time. Some times it is two full hours. So for two full hours, Andrew is forced to either go to his bedroom so he doesn't witness Trenton and to get away from Trenton trying to hurt him, or to hide and get out of the way. Sometimes he goes to his room. Sometimes he is so scared he wants me. That leaves me trying to console and protect Andrew, while trying to keep Trenton safe. It is very hard!

I try to teach Andrew and inform him about Trenton but it is very difficult for him to get a good understanding of why Trenton does what he does.

 Andrew needs a lot of attention, especially after Trenton's episodes. Trenton needs a lot of attention 24/7. What am I suppose to do?
I have often said, " I feel like I am picking between my children."
Single parenting special needs is a very difficult role in life. Sadly, it often leaves Andrew feeling more like a glass child.

However, I try my best to make it up with Andrew. I can only do so much.

I know in the future, Andrew will be a stronger grown man for what he has had to endure in his life with growing up with a sibling like Trenton. I try to tell him that now but that is hard for him to understand. I do believe he will end up being a more kind hearted person who will end up having a lot of compassion for people like his brother. However, right now it is hard to see things that way when I, unfortunately, see the tears that roll down Andrew's face daily because of his brother. I see the fear and anxiety in his eyes when Trenton is having a meltdown or one of his "bipolar" moments.
I hear Andrew crying "Moochies tell him to stop." and it pulls at my heart strings even more. I have one child who is very aggressive, hitting me, breaking things, and my other child that is screaming for his life because he is very scared.

It is hard. Our life is hard. Trenton's life is just unimaginable to most on how hard it is. Andrew's life is beyond hard due to Trenton. However, at the end of the day, we are a family of three who are just doing what we need to do to survive in this world. Our life is totally different from most. We may not like what we had to do but we have no choice. That is one thing I am teaching Andrew from the get go..... I tell him that God gave us his brother and in the end it will only make us stronger. I tell him to not give himself a choice and do what you have to do.


Some times I have to act like a kid simply because he doesn't have brother that will play with him like a typical brother would.

 Andrew is so smart!!! He won the math award for his class this year! This kid does amazing math!!!!! It blows my mind!

Sunday, May 20, 2018

Update on Trenton

Last week was one of the most difficult weeks I have had in a long time. No words can describe the feeling I had when I had to leave Trenton at the Harsha Behavioral Hospital. It took every ounce of strength that God provided me that day to walk out without my baby. I knew it was what he needed. At times, parents have to make decisions that they may not want to make. I have had to make a lot of those for Trenton. I knew in my heart it was the best decision. Whether I wanted to or not, I had to let him go so he could get better.

Trenton stayed in the hospital Monday through Friday. I was told I would get a 24 hour notice before he was released. I was struggling big time Friday at work. I cried....actually I cried everywhere last week. If you saw me, I am sure I cried to you. Anyway, I was struggling bad Friday. To much of my surprise, I got a call in the middle of a meeting and it was the hospital saying that I could come get him! I didn't need 24 hour notice because Trenton was already in ABA therapy five days a week and he already saw a psych regularly....so when they decided to release him, I didn't need the 24 hours to make doctor and therapy appointments.....THANK GOODNESS!!!! I could not get out of work fast enough that day!

When Trenton walked out of the hospital, he grabbed my hand and said, "I want home." and then he started smiling and he hasn't stopped smiling since!!!

For the past several months, Trenton hasn't been happy. He has been walking on egg-shells which makes me walk on egg shells because I never knew when he was going to snap and explode. When he exploded he went into a rage where he was trying to hurt himself and everyone around him.  Over the past several months many people have said, "Something isn't right. He can't be happy like this." and I agreed with them. He needed something that he wasn't getting.

I was in the process of working with one of his doctors in trying to change and get Trenton on the right medicines.  It is very hard to find the right medication because at an outpatient doctor appointment, the doctor can only observe the patient for so long, they don't witness the episodes, and then if the medicine didn't work you have to wait a few months until you can get back into the doctor. In some cases, such as Trenton's, it ended up requiring a hospitalization because he was getting to be too dangerous to himself and others.  Through the hospitalization, the doctors are able to observe the patient over a much longer period of time. Trenton's episodes would happen a few times out of the day but you never knew when it was going to happen. You couldn't be around him for a few hours at a time....one needs to be with him for a few days so they can witness the reality of what was going on.
During his length of stay at the hospital, they most definitely saw what I was talking about. The doctor diagnosed Trenton with having Disruptive mood dysregulation dissorder. (DMDD) Disruptive mood dysregulation disorder is a childhood condition of extreme irritability, anger, and frequent, intense temper outbursts. DMDD symptoms go beyond  being a “moody” child—children with DMDD experience severe impairment that requires clinical attention.

One of Trenton's very first therapist told me...."Trenton's autism is very severe. Don't be surprised if he is later diagnosed with some mood disorders and other disorders that often go along with severe autism." She was right. She said this because she had witnessed some episodes. Trenton has always had these episodes but they were much fewer and farther between when he was a younger.

Nonetheless, he came home on some medication changes and adjustments and he has been one happy boy the past 48 hours!!! I haven't seen this in him for months!
The past several months we were trapped in our house worse than ever...we literally never stepped out unless it was school or work or therapy. I had one too many episodes of him attacking people in stores .....so we  became prisoners in our own home....worse than ever!

I hope and pray that this medicine keeps on helping and working for Trenton. He is an amazing little boy! He has to many challenges from his severe classic autism, severe sensory processing disorder, severe ADHD, and now DMDD.  I just want to do what is best for him to make him have the best life that he can possibly have.

Last week was Hell on Earth. I felt naked without him. Everywhere Trenton is....I am. I honestly felt that I wasn't whole....I wasn't me.  I am only away from him on Sunday afternoons when he visits his Dad. It wasn't right...it didn't feel right not being with him. A mental hospital is much different than a regular hospital. One can't sit in a room with their loved one all day....it is way different. I went five days without seeing.......I was a lost mother. However, if he keeps the smiles up and the amazing attitude that he has had the past two days....then those five days in Hell on Earth was worth every second!

He got a treat and we went swimming at our neighbors yesterday.

We have stayed home all weekend trying to keep things low key and normal. We did go out into Burger King. Gracie missed Trenton and they needed to work together again.
Later in the day, Trenton grabbed my hand and said, "I want McDonald's fries." WOW!!! That is some good talking from him!!! I hope his great use of words keep it up on this medicine too!
This was Trenton's face the second he walked in home. He was so happy to be home!!
This was us walking out of the hospital on Friday as a family of three....finally!!!!

Sunday, May 13, 2018

Toughest Decision To Date

Today, on Mother's Day, I had to make a decision that I never thought I would ever have to make when I became a mother. A decision that no mother should have to make.
Instead of Mother Day celebrations, this weekend I have been restraining my own child repeatedly. I've been watching my first born son destroy my house, hurt me, hurt his brother, and it is hard to stop him. I've been left in tears numerous times the past 24 hours. He has a rage of anger that takes over him and one can't stop him until it is over and then he crashes for a while until it starts up again.
I've been in communication with his BCBA this weekend and there  was no other choice than to call the hospital. His 70 pound body has the strength of a 150 pound young man.
Tomorrow Trenton is going to be admitted to a behavioral health hospital.

I remember when Trenton was a toddler and I heard stories of families having to do what I am forced to do. It seemed so far off....I didn't think my son would grow up to be an aggressive one. Sadly, he has.
This life isn't easy. It is full of trials. Instead of celebrating my amazing mom today...instead of celebrating Mother's Day I am in constant thought about leaving my baby in a hospital tomorrow and being forced to leave him. Why does life have to be so hard?!?!?

No matter how much he hurts me physically. No matter how many things I have to do that I DON"T WANT TO DO  but I know it is for his own good, he will always be my baby! Today, as I am getting prepared for this whole new chapter in our autism life, one that I never thought would enter our life, I am remembering the happy baby times of the little boy who first made me a mommy.






When I have to leave him tomorrow, I am not leaving my out of control seven year old non verbal son with autism who has dangerously aggressive behaviors...I am not thinking about any of that.... Instead I am in pure hell because I am leaving my baby!

Thursday, April 19, 2018

Introduction


It is time for an introduction.
Thank you so much for following our story. I started blogging years ago but only started my Facebook page three years ago. 

I am a single mom to two little boys. I was just your average woman living life to the fullest until my life changed dramatically one day. I gave birth to my oldest son, Trenton. By the age of 15-18 months there was no doubt he had autism. He received the official diagnosis two weeks before his second birthday.  He vocal stims a lot. He is a severe, classic autism case. He is non-verbal and unable to communicate. Therefore, he has many meltdowns and trantrums.   He will never be independent. He rarely makes eye contact and he lives in his own world. Trenton attends school a few hours each day and then he goes to Harsha Autism Center the rest of his day. 
His life is hard. Our life is hard. If you really want to know more about our life, follow our story! I share it all!!!

My other son, Andrew, is 6 1/2. He was diagnosed with high functioning autism at the age of 2 1/2. He attends Kindergarten. He has an amazing memory. He has issues with anxiety and always has to be told what to do. He rarely can figure things out without being explained what to do.

I was forced to go back to work a few months ago. I am a teacher and have my bachelors in special education. For five years I was highly involved in Trenton's therapy. However, after my ex husband left a few years ago, being able to stay home and being actively involved in helping Trenton soon became impossible. I had to go back to work. Needless to say, I am BUSY! I have two little boys to support....therapy appointments to make....needs of a severely disabled child to make.....needs of my youngest son to make....needs of a homeowner....dr appointments...caseworker appointments.....need I say more?!!? I AM BUSY!!!

On most days I pass myself coming and going and barely have time to catch my own breath. However, I have two little boys who depend on me and need me daily.

I am also a freelance writer and published author. My book can be found here

I write on life with severe autism. I write on ABA therapy, toilet training, and anything else that happens in our crazy autism world.  I write on all the emotions that we as parents face on this journey. I write on just about everything and I hold NOTHING back. This life isn't easy and I am here to let others know they aren't alone. We all know as fellow autism parents that this journey is a lonely one. I know I can't get through this life without you all!

Trenton just got a service dog a few weeks ago. Gracie is her name and we are slowly adjusting to life with her!





Thanks again for following our story! I am honored to have 5800 likes. I don't promote my page. I don't do anything to try to get likes. I just simply share a very small fraction of our life and hope you can either relate or learn something for us.
Thanks for following and thanks for sharing our stories, post, and page.

Saturday, March 31, 2018