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

Sunday, March 11, 2018

No Words



What does it feel like to have a non-verbal child with severe, classic autism?

I have tried to find the perfect way to describe what it feels like but there are simply no words. I have opened a dictionary and searched it up and down for the perfect word to describe the pain, but there isn't any words. It's indescribable.

Yes, I live in this world just like you. I lay my head down on a pillow each night. I open my eyes in the morning and thank the Lord for another day. I enjoy watching the latest TV shows (when I get a chance which is  slim to none.) I cook, clean, do laundry, mow the yard, gain a few pounds from time to time just like you. I pump gas in my car. I go grocery shopping. I do almost everything that a normal, American does.I am much like you.  BUT....I do it behind one of the worst pains in the world.

I would love for my son to look me in the eye and smile. I would do anything for him to communicate to me what he feels like and how much he loves me. I would love for him to acknowledge my existence in this world. But, after 7 1/2 years I still don't get any of it. I doubt I ever will.

I cry each and every day. I just want to know for ONE MINUTE what it feels like to share joint eye contact and love. I want simply for one time to feel a touch from him, his arms wrapped around my broken body....I want to hear him say, "I love you so much , Mom."

I have sacrificed everything since he entered this world. Our life has been turned upside down and then some...... and we aren't getting any close to one of the things that I want the most in life.

I want to lay my head down at night and to wake up each morning without the fear and anxiety of what his future holds. In reality, that will never happen. You see...when you love someone so much, it simply hurts to see them hurt. Yes, my son hurts. He hurts every single day. He cries every single day due to his challenges of classic autism. He cries. I cry.

When you love someone, you sacrifice and do whatever it takes for them. I will always do that for my T-man. No matter what kind of life we have to live, I will live it for him. That is what love does.

Hope, when you love someone you hold on to hope. I hope that one day, just one time, I can know what it feels like to have my son show me love. I want that natural, tight hug that loved ones give to each other. I want to have a conversation with him even if it is on his AAC device,.I long for a conversation so bad that it hurts. It breaks my heart more each and every single day.

But, until that happens, I will continue to live behind my broken heart and one of the worst pains known to a parent. I will continue to go about my daily life, doing what is best for the boys and myself. I will always greet you with a smile. I will always pretend that I am just fine.

We have learned to adjust to his special needs. However, I will never be fine with the fact that my own son lives in his own world and can't even acknowledge me, hug me, have a conversation with me, kiss me, smile at me with joint attention, etc etc etc. That I can never get used to..........One can never adjust fully to one of the worst pains that will never go away until you take your last breath......simply no words to describe.



Saturday, March 10, 2018

Potty Training Tips-Post 1

(Trenton on potty training with his ABA therapist in June 2015)

Potty training is not a simple task when it comes to autism in general, especially when it comes to non-verbal severe autism. I want to share a few tips that I learned and found important when I successfully trained Trenton, who has non-verbal severe autism.

1. The environment is crucial. Sometimes kids on the spectrum are very sensitive to the sound of a toilet flushing, bathroom fan,  temperature of the room as well as the temperature of the toilet seat, or simply the echo that a small room such as a bathroom has. If your child is sensitive to these, you will need to do what you can to make the room a little more pleasing to your child. Examples would be to not flush the toilet when your child is in the bathroom. Just make sure if you have a child sensitive to these that you make adjustments BEFORE you start the toilet training process.

2. You MUST have a good motivator to get your child into the bathroom. The motivator has to be something that is pleasing and motivating to your child. If your child really likes the a certain video on youtube, then use that. The key is that your child will only be allowed to have that while they are in the bathroom on the toilet.

I had a hard time coming up with something for Trenton because he was not into much when he started training. After I tried different things, I finally had success with a mini-laptop. I bought him a mini-kids laptop and he only got that when he was sitting on the toilet. When he was done, I put the laptop up where he could not get it. This was very motivating for Trenton!

After the first six months of training, Trenton got to where he did not want to go into the bathroom at all. He would go into a meltdown. Finally, after a few months of battling this, one day I completely changed my bathroom d├ęcor to Sesame Street. I bought a Sesame Street shower curtain, put sesame street stickers all over the walls. HE LOVED IT!! He only go to go into this certain bathroom when he was on the potty. I made him use the other bathroom for baths. HE LOVED his new Sesame Street bathroom. I'm not going to lie when I say I spent a lot of money in 18 months trying to get Trenton successfully trained!

3. When your child successfully goes in the toilet, give him immediate praise! Praise your child with whatever motivates them and what they like. Trenton love it when I verbally praised him and he loved M&M's. Therefore, he got both! He ONLY got M&M's when he went in the toilet. Again, this was a huge motivator for him because he loved M&M's but ONLY got them when he went to the bathroom. Eventually, it plays a huge role. It won't at first because it takes time as anything does with autism. However, over time he realized that he only got those when he went in the toilet.....He didn't realize it for a year or so but he finally did.

4. Have visuals displayed in the bathroom.  Children with autism thrive off of visuals. By my toilet I had all the steps to going to the bathroom right there for him to see at all times. I had this displayed in my bathroom before we even started the process. If your child likes social stories, find a good social story for them to watch on YouTube. USE VISUALS!!!

5. Use short sentences. Children on the spectrum has difficulty understanding verbal instruction. Keep on commands very precise and short. Use sentences such as , "potty time.", "sit on toilet", "pull pants down". Do not say a big sentence such as...."okay not it is time to go to the bathroom and try to potty." This is WAY to much for a child with autism to understand and comprehend. Everything needs to be short and precise.

I have many many more tips....stay tuned for more post on tips on how to train your child with non-verbal severe autism.

One of the most important things I can tell you as a parent is to be consistent and don't give up! It took me almost two years to get Trenton trained. I cried almost every day. IT WAS VERY DIFFICULT!!!!!! But, I stuck with it and Trenton finally got trained after two hard years!!!