Friday, July 13, 2018

Behavior Overview

I have had a lot of questions lately about Trenton's behavior and when did it get worse. I thought I would do a post explaining his behaviors from birth to present.

Ever since he entered into this world, he has had very difficult behavior. No surprise because one of autism's traits is behavior challenges. Trenton has for the most part always had maladaptive behavior. Even as a baby, if I tried to take him into a store, restaurant, church, another family members house, anything like that, he immediately cried, fussed, and didn't stop. I was the mom who had a baby that I wanted to show off to the world but I couldn't. He was NEVER happy. Even at home he was crying, screaming, and fussing most of his days. I would come home from work and could hear his screams from the parking lot and we lived on the second floor of a condo unit at the time.

He got a little happier when he could start moving and especially when he started walking. He started walking at 9 1/2 months and was running by 10 months and that is NO EXAGGERATION!!! He was a happier child at 10 months but he was so active, hyper, I couldn't get him to STOP moving, much like he is now at almost 8 years old. I still couldn't take him into restaurants and stores at this age. He still went into a meltdown every time we tried.

He never slept. Even as a baby. He screamed most of the night and this only got worse. Most nights he roamed the house, ran wild or was screaming, crying, and having very erratic behavior in the nights. He was uncontrollable. From around 18 months to almost 3 1/2 years old I spent almost every night driving the roads from midnight to 4 AM trying to get him to calm down and to stop his meltdown.
He was miserable and I was miserable.

His behavior slowly got better around 4 when he started full time ABA. His sleep gradually got better but nothing was perfect. In fact, he was four when he first let his behavior get destructive.  One day he ran through glass and shattered the glass in my parents china cabinet because he was in the middle of a meltdown and could not settle down and control himself. So, as you can see, his behavior got better but he still had moments of destructive behavior. It just happened a lot less!

Around 6 six years old,  restaurants finally became better. We could finally get through a quick ten to fifteen minute McDonalds' stop. Around this time he was able to finally walk into stores. However, it was on his terms. He would walk around the store going up and down each aisle and do what he wanted. Once you pushed his buttons and put demands on him he would go into a meltdown.

His behavior at home got better around six years as well. From age 2-6 he was known to have meltdowns at home but he started to take  a turn in the right direction and have fewer meltdowns and behavior problems around age 6.

When Trenton turned seven, he started to decline. It was shortly after he started school and his schedule changed. A few months into his first year of school and he started screaming all the time. Screaming was the first big behavior change. After screaming came along, next was the body slams into the walls, dropping down to the ground, hitting himself, and then he started attacking me and his brother....that eventually led to attacking other people......then he started to be destructive to property...pinching....biting ....and so forth.

So for us, it was seven when his behaviors took on a new level.
In the early years of our journey, I had many autism parents tell me that it would get better around 6 or 7. Well it did but then it quickly declined. I wish Trenton was one that got better and stayed better but that is not how our story goes.

So, as you can see, the signs were always there. Trenton was always a very difficult child with his behavior. His behavior always made things difficult, challenging, or impossible. We have always had to live behind locked doors and a schedule that met his needs. We still do all of this now....however his behaviors are getting worse as he gets older.
 Maybe they are worse because he is getting bigger and stronger. Maybe they are worse because his body is changing. Maybe they are worse because he is tired of being trapped in his body.
Many children on the spectrum can get worse when puberty hits....so maybe his is hitting early. I don't know. I just know that the signs and maladaptive behavior was always there.

Trenton was NEVER the calm child that let me do anything. I have never been able to get groceries with him or enjoy any type of outing in public...still not to this day.  I had to always be following him or he would be escaping the house, climbing on the counters, and doing no telling what else.

I hope and pray that he slowly gets better. With the DMDD diagnosis on top of severe level 3 autism, it doesn't appear to be very likely that it will get much better.

I do have to say this week, he only spent one time in the calm down room at Harsha Autism Center. It was today and his meltdown last 50 minutes. THAT IS A HUGE IMPROVMENT!!!!!!!! HUGE!!!!!!!! He was spending a lot of time in there daily! So, I think we are getting closer to a good medicine combination for him!

This picture was taken of Trenton at 2 AM when he was three years old. Honestly, if he wasn't lining up the entire house, he was screaming and crying back then.

He is four in this picture. This was a typical picture of him falling asleep ....anywhere his body let him go to sleep, he did......we still have some nights like this.
This picture is of Trenton sleeping in the van in the early hours of the morning after being up the entire night. It was one of those nights/mornings where I had to drive and drive to get him to calm down from hour long meltdowns and I was so tired I just stayed in the van and slept with him.

Saturday, July 7, 2018

Pictures from Internet of his favorite things


One of his obsessions these days is finding pictures from the internet and printing them off.  I have so many pictures all over my house.

Monday, July 2, 2018

Sick little boy

Guess who called into work from Harsha today and guess who didn't make his therapy?!?!
I have a sick T-man.

Saturday, June 30, 2018

Update

I have been getting lots of messages wanting to know how Trenton is doing. Here is a very brief  update.....

Its been a whirlwind lately. Lots of doctor appointments and blood draws, etc.

First things first, he went to the doctor again this past Tuesday. Trenton snapped and went into one of his mental breakdowns at the doctor office. It lasted the entire one hour when we were there. My mom who drove over two hours to help me was left bleeding after the appointment. Trenton was aggressive, dangerous, hitting, scratching, biting, pulling hair, destructive, etc etc etc. The doctor was left SPEECHLESS! He was in shock of Trenton's behavior. He is very worried about Trenton.  At the end of the doctor appointment, his doctor asked me if I would consider getting on Prozac and seeing a therapist. He said this life isn't healthy for one person to manage. Oh how well do I know! But, I manage it and smile at the same time because I have no choice!

Sadly, Trenton's history of being on medicine and not being on medicine is the exact same. Trenton has tried almost every mood stabilizer there is except for one. Therefore, his history gives me no other choice than to try this mood stabilizer, the very last one we haven't tried. So that is where we are at. The doctor said I better hope that this works because if not, there is nothing left to try to help him and he is very unstable. The future doesn't look good for him if this medicine doesn't help.
This week has been the same. He has had lots of bad moments but lots of good moments too. Everything has to be perfect. The slightest bit of thing can make him snap and when he does it can be a very bad situation really fast.

Trenton's bloodwork came back negative for any type of infection and negative for PANDAS. So, like the doctor said, it is unfortunate but it is just Trenton's autism and biopolar that is making these behaviors.
I am in the works of getting him into a neurologist too.
It is NOT easy handling all the doctor appointments, phone calls, etc while working. I have sole legal custody of the boys so everything is on me....and it is so hard. I am one heck of a good multi-tasker these days. LOL!

I lost the battle for FT ABA for his insurnace....they only approved 16 hours a week. I am disappointed...I am mad...I am sad...I am everything! But, what can I do?!?!??1 I am one person. I can only do so much. His therapist and I put up a good fight and we only won 16 hours.


Next, a lot of people ask me if I do respite. Yes, I have respite but that is for the evening and weekends. I work almost 40 hours a week. I have one respite girl that is awesome!! The others haven't lasted here. Today for example, I had to come back one hour later because the girl was afraid of Trenton because he was having a moment. Respite isn't always available when I can do it.
We do have one babysitter that I pay out of pocket too that is awesome! She is wonderful but it is hard to make ends meet as it is. My life is paying for a babysitter just to get groceries.....how sad is that!

I get a lot of questions about if I have supportive family. Yes, I have my parents but they live two hours away. I don't have any family or friends in my town.
Do the boys see their dad? This is another question. The boys see their Dad on Sunday afternoons for about six hours. This next week is a bit different, their Dad is off of work so instead of going to day camp, Andrew is going to his house. They normally get a week in the summer time where he is off of work where they spend some time with him. Other than that, it is normally Sunday afternoon when they visit him.

How do you do it? I get asked this a lot. It is not easy! I am up by 5 every day so I am ready for work by 6 and the next hour I spend getting the boys up and their items packed for the day. We leave the house by 730 so I can drive Andrew up to the north side of town so he can go to camp while I work. Trenton and I are done at 430, we drive back to the north side of town, pick up Andrew and we finally make it home at 530. I do not sit down once. I am up meeting Trenton's needs till he finally goes to bed which is anywhere from 10-2 AM....we do this five days a week. While doing all of the that lately I have been in constant communication with the doctors, medicaid, insurance,......IT IS SO MUCH!!!! But, I love the boys and would never give up on the battles!

I am not able to have much of a life. It totally stinks but what can I do! I am the only one there for them 24/7 and they need me more than ever!



Wednesday, June 27, 2018

Dvd

Trenton wanted to watch a certain DVD but he didn't have it. He broke it in a meltdown. Therefore, he printed a picture off from the computer of the DVD he wanted to watch, cut it out, and gave it to me and said "watch".


Gracie

Gracie sleeps like a cat!!!!!




T. V.

I'm not sure when I'll be brave enough to buy another T.V. 
T-man did it Sunday morning having one of his aggressive meltdowns. Needless to say, we didn't make it to church Sunday.



Saturday, June 23, 2018

Aggressive Autism

For those who don't follow my facebook page, here is a post I posted on there last Friday......

Everyone says they like my honesty..so here we go with this post. This is a hard one for me to post and I post because I don't want another mom to go through what I did yesterday. I had twenty plus people just look at me and no-one offer help. So, after you read this and you see a mom struggling with her child...please offer help. Don't judge her child, offer help.
Yesterday Trenton had a rough day at the autism center. At one time he was in the empty calm room for almost 2 hours cause he couldnt calm himself down and just wanted to be violent and aggressive. Long story short, after work Trenton and I have to pick up Andrew at camp. Trenton got out of his seatbelt lock and started attacking me while I was driving. Once we arrived to get Andrew, I was his target and he would not calm down. I tried to hold his hand and he would just bite my hand, pull my hair, run away....I would get ahold of him again and he would bite me...he ripped my shirt....he was screaming....kicking....hitting and kicking at others who got close to him. I am in a dead sweat trying to pick my other son up from camp and I clearly can't and no-one tried to help me. I obviously needed help bad and I don't blame anyone.
I just want the world aware of aggressive autism. It's not talked about in the media....its hidden.
I could say more but I can't. This post is hard to post. I will post one picture of a bite and I have five others on my body like that. My left eye is bloodshot from him digging at my eye when he was on top of me attacking and numerous bruises and scraps from falling in the parking lot....
For those that want to know, CBD oil is not helping us! Things have only got worse since adding it.

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

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!!!

Sunday, March 4, 2018

Swing

Swinging is great for kids with autism. It helps them stay focused.  The boys love this swing.

Friday, February 23, 2018

Grief



Are there certain rules to follow on grieving? Is a parent only allowed to grieve for a certain amount of time?

I hope no one ever tells you when and how long you are allowed to grieve because we are allowed to grieve our entire lives.
It's been six years since I have known that something was different with Trenton. Six years of knowing my child's life was going to be much harder than mine. Six years of knowing my life has been forever changed. Six years and I am still grieving every single day.

It is not easy waking up each day and living the trials of severe autism. I think numerous times a day, "If it is this hard on me, what is it like for him?" It is in fact much harder.
I watched my son suffer big time the other night. He has lots of "days" and "moments" that I don't talk about and keep to myself.
Also, he often has nights where he gets what Clary Fleischmann explained as, "ants crawling on her body with fire." He screamed and cried for hours. He paced the house crying. He slams his body down on the ground. He hits and attacks. He can't tell me what is wrong so he gets frustrated. His behaviors escalate quickly and Andrew and  I are usually his targets.

I have cried a lot lately. Maybe it is a combination that I am working now and unable to meet his needs like I have been able to? Maybe it is because this journey never gets better because he suffers a lot each and every day. Yes, he suffers. He cries because he is locked in his body and is unable to communicate .He knows what he wants but his brain doesn't allow him to communicate it nor does it allow him to use his AAC device.  His body does not allow him to sleep without certain medicines and sometimes his body chemistry gets totally out of whack that medicine doesn't even help.....so he walks around suffering because he is so tired but his body wont go to sleep. I know first hand how hard that is! He suffers from GI issues and has severe stomach pains daily. He lives in chronic stress which leaves him with severe headaches.....again I know first hand how much chronic stress can give a person a chronic headache and it is no fun! He can't feel his body at times and needs weights...he hears sounds that we don't even hear and sees things differently than we do. His sensory needs are severe. If I had time to meet his needs like I should be, he should be getting sensory breaks every half hour to a hour every day but I can't exactly provide that.

So, yes I still grieve all these years down the road. Someone once told me that I haven't accepted my child's life if I am still grieving. That could not be further from the truth. I honestly just laugh at that remark. Grief never goes away if you truly love someone because it makes you sad to see how they suffer. Living with the grief becomes easier but deep down you are still allowed to grieve and mourn for your loved one.
As we both get older and as the world keeps getting more cruel, I fear for his life on this Earth. It is not an easy world to live in without disabilities......so just think how hard it is to live in with a major, severe disability that leaves you permanently dependent on others your entire life.

So to all the other parents of severe kids with disabilities....it is okay to grieve your entire life! We are allowed to!!! In fact, if you are like me, if you let yourself have a good cry, you will feel much better for awhile.

Wednesday, February 21, 2018

Football plays

 Andrew loves to write football plays!!! He always wants me to give them to coach Uncle Brian.



Saturday, February 17, 2018

Boys

Continued prayers for these two little boys. Andrew still having issues in Kindergarten and trying to adjust to me working.

 Trenton continues to have the hardest life of anyone I know.  He needs an active mommy in his therapies and I  can't be now that I have been forced to work.....makes me sooooooooo sad.  For the first time ever this week, I wasn't able to stick up for him when I should have but I simply can't do it all.

Saturday, February 3, 2018

T-man is getting it back!



Restaurants used to be impossible with Trenton. I have worked and worked with him since he was a toddler on trying to make it through a pleasant restaurant experience with him. I have went through a lot with him on trying to achieve this step. Many experiences lasted no longer than two minutes. Over the years we have slowly worked our way up to ten minutes then fifteen, etc.

The thing that helped the most was consistency and always going to the same restaurant. Once he was able to achieve a successful experience in that restaurant then I would add one new one and work on that place while also going back to the familiar one too.

Trenton got really good at restaurants about  a year ago. However, this past August/September he declined big time. Trenton went into a regression. His normal routine was thrown off a few times, school was added into his schedule, etc. Therefore, everything went downhill. One of the things that declined was his behavior in public, such as a restaurant experience. Even though he went through a very difficult phase, I was still very brave and tried restaurants. We didn't last very long on some days. He would sit down at the booth and scream repeatedly. He would go into a meltdown, hit, and try to escape, etc. Therefore, for a many weeks I stopped taking him out in public. He needed to get his routine and behavior under control before we could master our public restaurant experience.

Slowly over time  his schedule got back on track, he got used to school and his new schedule. Therefore, I slowly introduced his familiar restaurants to him. He started achieving them again! FINALLY!!!

Today, he went to a new place and loved it! I had a birthday this past week so my parents came up today to take us out to eat. I had Andrew pick my birthday lunch and he picked IHOP. As always, I am so proud of him. Every thing is baby steps with us and sometimes we are forced into regression due to life happening but we slowly make our way back to where we were! I am happy to report that T-man is doing well in restaurants, again! (FYI......well for us would probably be bad to most people. He vocally stims and is impulsive, and fidgets but we make it through!)