Sunday, September 30, 2018

When The "R" Word Hits Too Close To Home.

I remember the first time I heard the "R" word. I was a young, college student working towards my special education degree. My professor was  giving a lecture on residential treatment facilities.
My professor explained that this is the last option when there is nothing else left to do.

Residential Treatment.....The "R" word that really hurts.

As I sat there listening about residential treatments, my heart broke for all the parents who faced that decision. I never once judged the parent. Instead, I thought of the heartache and how horrible that had to be for the parents who had to face that in their life.

Little did I know then, my heart was breaking for parents like myself...…

"He will always live with me."
"I will do what I have to do to make sure he always lives with me."
"I won't place him in a group home."
These are statements I have said since I found out Trenton's autism was severe. Since the day I realized he will never be independent, my mindset was on making sure he got what he needed now to make sure he would be stable enough to live with me.

I use to drive two hours a day, stay in a hotel overnight just so my son could get therapy.
I moved to a different state...a state that provided so much more....just so my son had a chance of living with me and not a group home.

Trenton has made progress in many areas except for one. his behavior. Instead of making progress, as he gets older, he has regressed.
He is eight years old and can truly hurt me before I know it.
He bites, scratches, kicks, hits, and attacks himself and others. He has hurt others.
He head bangs. He elopes. He destroys and breaks anything he can. He has ran his hands through a glass window...not once...not twice...but three times!

I knew in my heart last spring, that we were head down a road that I didn't want.
I have cried to the point that I have no tears left.

Residential treatment was first mentioned last spring....that is when this started to become more real.
In fours months, he has had two inpatient stays in a behavioral hospital.
The school has exhausted all of their resources. Trenton will no longer be going to school as soon as paperwork is done.
Residential treatment was recommended.
It is recommended from everyone.....

This Momma's heart will never be the same.
I have worked so hard to make him the best he can be. I have changed my life...literally to help him. I would take a bullet for him. I would die for him. I would do anything for him and his brother. My children come first and always will.


I don't look at residential treatment as a failure. I look at it as another option.

Sadly, some individuals with special needs are so severe that they need the around the clock care.
It has become unsafe to keep him home without help. If I was married, then maybe he could stay home but when it is just a single mom, it is hard. It's not because I don't want to. I want nothing else in this life than to take care of my own son till the day I die....but when he is very mentally ill and has no control of his strength and behavior...what I want doesn't matter anymore. It becomes a huge safety issue.

Some days I feel like I am living in a nightmare and can't wake up.
How could this happen to my child? It is suppose to happen to others, not me....not my little boy that I gave birth to....not my  little boy that use to smile and dance to Sesame Street....
not my little boy that spelled his first words at 2.5 years old....not my little boy that I love more than life itself. How could my little boy have autism and DMDD so severe that it has taken over his life?!?

I swore by my statement of keeping him home for life. I had already started making plans for that.....but slowly as he regressed....our plans were changing before I knew it.

For now, I am keeping him home. I will keep him home as long as I can!! I will pray every day for a miracle. I will pray that my son's body and mind will change for the good over time.
I will not give up hope! I have to hold on to hope.....because hope is all I have left to hold on to.

I HOPE AND PRAY THAT TOGETHER TRENTON AND I CAN OVERCOME RESIDENTIAL TREATMENT AND BLOW EVERYONE AWAY WITH OUR HUGE TURNAROUND!! ITS ABOUT TIME WE SEE A MIRACLE COME OUR WAY!

Follow our story here and at https://m.facebook.com/twobrothersonejourney

Monday, September 24, 2018

Love


LOVE

Love is an incredibly powerful word. When you love someone, you want nothing more than for them to be truly happy no matter what it takes because their needs come before your own.
Love can make you do anything and sacrifice for what will be better in the end.
Love is when all you care about is their happiness, safety, and health.

Sometimes in our life love makes us make very difficult decisions.



Trenton, my oldest, is an eight year old boy that can have the happiest of times. When he is on a high, he is happy, laughing, giggling and having the best of times..... but when he is having a low time......he is very low. He can be very dangerous to himself and others. He is not safe to be around. It is simply bad.
What are you going to do? He is getting stronger each day.....I hear often.
We have to get a handle on this now because he puts others in danger when he snaps.....I have heard lately.
We don't know what to do, we are at a loss on how to help him....I hear often.

Right now, Trenton sees the top doctor in this area.I speak with him almost weekly lately.
Over the past fours years I have tried almost every med on almost every dosage and I have tried no medication on Trenton. Trenton is a mystery on how to help.
I've been to numerous doctors....I am researching other options. Time is running out....I am a single mom with a son with severe, aggressive autism and as his doctor said..."probably other psychos but we have no way of finding out due to his autism.".....Time is running out.

Today, I made the difficult decision to admit him into Harsha Behavioral Center again to try a new medication that has to be closely monitored for awhile.
Yes, it is breaking my heart......
He is my heart and I am his voice......but today the heart and voice had to be separated and has to be separated all week so we can take this chance of a better future.
If his future has the possibility of being better with this one medication then I will separate us for the week for the chance of a better tomorrow.

LOVE
Love does whatever it takes to better the life of the one you love so deeply....if I could give him my body and mind, I would!!! LOVE DOES WHATEVER IT NEEDS TO DO.
Love is putting the one you love before yourself.
Love is sacrifice.

Over the course of the past few months, Trenton has randomly said, "doctor."
I have often wondered if he wants me to get him help. One day he went into the garage, sat in my van and said, "doctor". Trenton doesn't want to feel this way. He wants help.

Today, when I told him where he was going and that Mommy couldn't be around because they were helping him, he leaned into me and wanted a kiss. So I kissed him. A few minutes later , I told him again and he leaned in and hugged me. This was the reassurance that I needed that I made the right decision today.
He is a smart boy. He wants to feel better and I have a lot of high hopes that we are on the right track this time.

Please pray for us this week as we continue down our difficult journey with autism.

Sunday, September 9, 2018

Who We Are

I have many new followers so it is time for a introduction to tell you who we are!!



I am a 37 year old single mother to two boys on the autism spectrum. I have done a lot to help my sons.....even moved to a different state away from family so Trenton, my oldest, could get ABA services. I am a special education teacher at Harsha Autism Center (where my son goes). I am also a freelance writer and published author. My book can be found here....

https://www.amazon.com/Two-Brothers-One-Journey-Struggles/dp/1861516231/ref=sr_1_1?ie=UTF8&qid=1468978526&sr=8-1&keywords=Two+Brothers+One+Journey

I don't have one single minute to myself...hardly ever! I have to work full time while raising two boys with autism.....that gives me NO time......it is so exhausting.

I advocate a lot to bring awareness to autism when I can. Autism has totally changed my life. I used to do a lot of things. I enjoyed life to the fullest but since my oldest son's diagnosis, many things have been taken away. The life I knew does not exist anymore because it can't and let me tell you why it can't......

My oldest son, Trenton, is eight years old. He is mostly, non-verbal with severe, level 3 autism. He also has Disruptive Mood Dysregulation Disorder.  He was diagnosed with autism two weeks before his second birthday. His autism is SEVERE. He is so affected by autism that he can't go into stores....you know the whole running errands with your kids things......I don't know what that is like......it doesn't exist with me. He has high anxiety and aggressive behavior so when I try.....I just set myself up for more stress. I don't know when he is going to snap and attack other people. He will scream, hit items off the shelves if he can't do exactly what he wants to do in stores. He can't wait in a grocery store line. He goes into a meltdown.
He has severe sensory problems. He swings alot and jumps on a trampoline. He is a pacer and has to be constantly moving....and when I say moving...he moves!!!!! He doesn't sit still longer than two or three minutes. He walks and paces into a different room every few minutes at home. ...IT IS EXHAUSTING!

He does not know danger. He is an eloper and that is getting worse as he gets older. I recently enrolled him in Project Lifesaver and that is going well so far!

Some nights he sleeps during the night and some nights he doesn't.

He does a lot of vocal stimming. He doesn't play with toys very often. He normally gets fixated on items and that rules his day. If we leave the house without something that comes to his mind he will go into a meltdown and the rest of his day is ruined. He will scream, hit, kick, and cause destruction the rest of the day. His aggressive behaviors have got better since he started taking a certain medication. However, he still has them. Weekly, and sometimes it is two and three times a week, he is put in a CPI hold  at school due to his behaviors.

Trenton has a service dog, Gracie. We LOVE Gracie!!!!!!

He has an AAC device  but is unable to communicate daily needs on there. He likes to type his fixations on there. He fixates a lot on animals and Sesame Street figures so he will type their names out on the device but as far as telling me if he feels good or what else he wants, he can't. Again, this goes back to his fixations and OCD on the items he is obsessed about. However, he is unable to tell me how he feels or what he wants on his device. I hope and pray we get to that point one day.


Andrew, my younger son, is 6 1/2. He has a diagnosis of high functioning autism. He was diagnosed at 2 1/2 years old. Andrew was in therapy for a few years but does not get any at this time. He is very verbal and very smart. He has anxiety problems. It is a huge battle to get him to go to school every day. He does NOT like being around all the kids at school. He can often be found with his hands in his mouth on the verge of a meltdown or tears.  He is the kid that is often picked on and made fun of .......which breaks my heart. It is all I can do each day is to put him on the bus. However, I am a single mom who needs to make a living so I am unable to home-school or put him in a smaller private school.
He does not like change in his schedule. He is a kid of routine and does not like when it is changed. I don't change it unless I have to because it helps him cope with his challenges when he has the same routine weekly.
When Andrew was younger, he was a social butterfly....but he has went spiraling downhill as he got older and his doctor said it is anxiety taking over.

He has a hard time understanding his brother's problems which makes it very hard.

Andrew is a huge follower. He will latch on to someone or something and do exactly what they are doing....or he thinks he needs to do exactly what they are doing and he will fixate on it until he can do it. This has caused a lot of problems lately.

Overall, we are a family of three that is barely surviving the world of autism.
Before Trenton got aggressive behaviors, I was able to take the boys to places by myself. It was not easy.......NOT EASY AT ALL!! However, we managed some outings to McDonald's or a pizza restaurant. I worked so hard for years to get the boys to the point where we were able to do that, especially Trenton. Sadly, when we entered into 2018, Trenton started changing and aggressive behaviors took over. We have been trapped in our home ever since. Trenton has attacked others in public and it is very unsafe to take him. He is getting bigger and stronger each day.....which makes it harder to handle two boys with autism by myself.
So, when I say we are prisoners in our home...we really are.
When you have a child who elopes, who has aggressive behaviors, and who is being raised by single mom.....your options are very limited. I have very few people who are comfortable around Trenton due to his behaviors.

It sucks!! I want nothing more than to live a life instead of working and being trapped in our house but we don't have options. I can't have friends. I can't have a relationship. I can't be the mom I wanted to be. I can't be a good neighbor. I can't be a good daughter, granddaughter, aunt, sister....you name it.....I can't be it.
That is what SEVERE AGGRESSIVE AUTISM does.....it makes life beyond hard.

I follow many blogs and know many other parents who have non-verbal severe children as well. They are able to do much more than us.....but...when you add AGGRESSIVE, VIOLENT behaviors.....it is a totally different story! TOTALLY DIFFERENT!

There is so much more to our story. I am scared to look into the future. It scares me to death. The pain and heartache that I have ahead of me is unbearable for me to think about. One day I will leave this world and leave behind two men with challenges....one whom will be living in a group home. This life sure does have trials and tribulations.
I wouldn't trade my boys for the world. I love them so much...words can't even begin to express the love I have for them. They have made me a better person. I would give up my life to make their challenges go away but life doesn't work like that.
We do share a lot of joy but the pain and heartache of raising special needs children is a pain I would not wish on anyone. No one can ever begin to understand unless you live it yourself.

So, that is a just a small glimpse in our world at Two Brothers One Journey.


Gracie
 Trenton will sit for a few minutes and play with his animals.
 Andrew always loves to act silly with me. He always tells me he wishes I didn't have to work so I can help him more...breaks my heart.
 Andrew met Goofy:)


Wednesday, September 5, 2018

So much more

 To the world you are
.... the little boy that can't speak......
.... who has noises coming from his mouth....
....who flaps his hands and dangles objects in front of his face....
.....the boy that never looks at you.....
.....who never smiles or shows any emotions......
.....the one that screams, hits, pinches, bites, and scratches.....
.....that paces and never stops.....
.....the boy that rides the "special school bus".....
.....wears headphones, swings, and jumps on a trampoline to meet his needs......
.....that has to walk holding the hand of his teacher......
.....the one that doesn't have friends.....
.....the one that is never invited to parties......
....the one that elopes for no reason......
.....a boy who can't leave his house without his special toys....
.....the one who is "different".......

However, to me, your Mommy, you are my world and I see so much more!

 The world may not see it but to me you speak every day. It may not be through your voice, but I see it in your eyes. I see your strength and courage you have each day as you get on that "special bus". I see your strength as you walk the hallways that scare you because of your anxiety and sensory challenges. 

I see the love you have for your therapist, teachers, and loved ones when you glance at them. 
I hear your "happy" noises. I hear your giggles. I see your smile.

I see you look at others your age. I know you want to be like them. I know you try. I see and watch your determination every single day. 

I see your frustration with your body but what stands out the most is your strength and courage to keep on pushing through it. I see your determination. 

The perseverance you have is amazing. You came into this world with trials and you don't let it stop you.

I see the most fascinating little soul that I have ever met.
I see someone that doesn't judge others....who doesn't hold grudges. His soul is not capable of being mean on purpose. He is an innocent, pure, amazing soul.

He is BEAUTIFUL.

I see SO much more than the definition of autism. 

Sunday, August 26, 2018

Roller coaster

One can often hear autism being referred to a "roller coaster" ride for the family and individual.
So what does that exactly mean??!?!?
Well, let me explain.....

I found myself smiling at Trenton's play. I watched him laugh and smile as he was arranging and rearranging our kitchen chairs and placing his Sesame Street friends on the chairs.
Once he finished he would clap and make his happy noises. He was SO happy and in his own little world.
I found myself smiling and laughing with him. Happy tears rolling down my face because it has been so nice to see him smile and happy for the past 5 weeks since starting a mood stabilizer medication. I was taking it all in...moment by moment embracing my child for his differences and who he is.



The good times can't last very long with autism.....well with severe aggressive autism anyway.
The laughs and smiles soon faded away and I found myself in the middle of a war zone. It had been five weeks since he has been extremely aggressive. I spent 43 minutes fighting off my son as he went to attack me by scratching, head butting, hitting, and biting. Something was "off" with him. As I tried my best to keep him safe and his brother safe, I kept thinking and crying, " WE WERE JUST SO HAPPY. " We have been so happy for five weeks!!!!
NO!!!!
I can't do this again!!

I was left with multiple wounds on my body from his bites and scratches but what hurts the most is the heartache in my heart. The scar that I hide everyday from people. The helplessness feeling where you have a child that is so mentally ill that there is not much you can do for him. That is what hurts the most. It was well over an hour after his episode ended when I finally noticed the throbbing pain in my left hip from where he bit me so hard it went through my skin and bled.

I have spent countless hours looking for the right help for my son. Where is it?!?!?!? I have looked in other states...yes there is some but I am not a wealthy person and can't afford the out of state help.

Where is the correct help for children like my son?!?!?!? I HAVEN'T FOUND IT YET.
Our country is really lacking in mental health.
My son is eight years old and getting a doctor that will accept him because of his behaviors is difficult. I ask for a MRI...I ask for a CAT SCAN....I ask for this....I ask for that.....but we are tossed to the side and told..."It is just autism." Ok that is fine....but come on America....we need more mental health facilities...we need more places to help individuals suffering from severe mental health challenges.

So. Frustrating.

As parents all we want in life is to help our children but when we can't and when there is a lack of help.....it is so frustrating. Words can't describe how frustrating.

So, yes. Autism is a roller coaster ride!

Our roller coaster ride is full of smiles and laughs when we are on top of it but when we dip down to the bottom we are full of lots of aggression and helplessness.

Our computer that we just bought.....as in I still haven't got the credit card bill yet for it, was broke today in his mental breakdown.



Like always, I will keep on fighting......
I will keep on smiling behind my heartache....
I will keep on fighting for HELP for my son and all the other individuals who are SEVERELY affected by autism.

Sunday, August 19, 2018

Eight Years

August 20, 2010 at 5:45 AM my water broke. I was on my way to deliver my first born child into this world. I had no idea at the time how my baby was going to change my life.....FOREVER.

At 10:43 PM my hero was born.

As  the hours were going by and as the labor continued, I, like most moms, were preparing myself for a typical baby. You know the baby that meets their milestones on time...the baby who eventually would play t-ball and have friends over, the one who would grow up and get a license at 16, attend his prom, graduate from high school, get a career and a family of his own.

When I gave that final push and when he was placed on my chest was a moment I will never forget. I had waited my whole life to be a mom. All I ever wanted to be in life was a wife and mom!!!! I was finally holding my firstborn son. I still had no idea, as  the tears were rolling down my face and as I was counting his little toes and fingers how my life was about to change.

It has been eight years since that moment. Trenton James came into this world and has forever made his mark in a way that I never dreamed of.

The first nights home from the hospital were a challenge. I had a baby who didn't like to sleep. Instead he cried and fussed all the time. The days turned into weeks....the weeks turned into months and he still was not sleeping and still was never happy.
His doctor didn't have much to say other than, "You have a difficult baby."

The months went by and soon he was a year old.....still not sleeping and still not happy.

My baby was being slowly taken away to regressive autism. Before I knew it, he never looked at me, didn't want held, cried and panicked when people came to our house. He wasn't speaking, he was in his own world and never paid attention to what was going on around him.

While trying my best to be the best mother to him, we soon were given the autism diagnosis. My dreams of play dates, friends, sports, and a child who slept was taken over by therapy...more doctors... and more therapy. My baby who I gave birth to was in a fight to learn how to talk...to learn how to deal with his severe sensory processing challenges, to learn how to cope with his body...to learn how to live in a world that is not always accepting of his challenges.

It has officially been EIGHT years. Eight years. The tears are flowing down my checks as I type this. I remember the hopes and dreams I had when he was two, three, four, and five years old. Hopes and dreams that he will be able to communicate. Hopes and dreams that he will get better.....and better....and better.

As my own flesh and blood turns eight tomorrow, this has been the roughest year to date. Since his last birthday we have experienced a hospitalization to a behavioral mental hospital. We have experienced aggressive autism at its worst. We have experienced eloping at its worst.  It has been a rough year.

Eight. Eights years and we aren't getting better. Eights years of a fight. Although our autism story may not be one where we reach many goals......our autism story sure knows LOVE!
There are no words to explain the LOVE I have for my sons. I look at them and I just burst with LOVE. Trenton can't help how his autism makes him behave. He can't help that most people in this world are neurotypicals. He can't help the way he is.
To me, his is AMAZING, BEAUTIFUL, FUNNY, SMART, UNIQUE, and all the other fancy words that describes how awesome he is.

He is a FIGHTER! For eight years I have been by his side...day and night. I have slept in his vomit. I have slept in his poop...I have watched him partake in self injurious behavior, I have been attacked by my own son, I have watched the tears roll down his face when he is so upset that he can't tell me what he wants....I have seen and been through the unimaginable with him for eight years now.
For eights years I have watched him FIGHT to communicate. I have watched him FIGHT his body when it is in sensory overload. I have watched him FIGHT against his anxiety, ocd, and aggressive behavior...yes he fights to NOT be like that and I know this when he is screaming "sorry" when he acts out.

I will continue to watch him FIGHT all of his challenges till my last breath.

For eights years my heart has been broken like I never wanted to know.  It is broken because it hurts to watch your child's life be taken away from autism. Not all autism stories are like this....but when there is no other option for my son other than to stay at home with mom and hope to move to a residential facility one day when Mom can no longer take care of him....yes that breaks my heart. We all want dependent children but when you have a forever baby, it is heartbreaking.

So as we reach eight years of age, I am so thankful and blessed by him. He has really taught me so much about life and what the true meaning of this world is. Eight years ago before I gave birth to Trenton what I considered blessings then is not what I consider blessings now....thanks to my baby boy. Each day we can live, breathe, talk, communicate, have a normal functioning body is a BLESSING and that is all we really need in this life.

Eight years!

Eight years.......

Words can't describe what it all feels like.

I am just being real and honest. If I could give him my body and mind, I would. If I could take it all away, I would in a heartbeat. I would exchange my life for him to have a better body and mind. But I can't. That is not how life works. Instead, I can sacrifice and that is exactly what I do every single day. I sacrifice so much for him. It isn't his fault.....so I can at least be there every minute for him....I can research and make all the decisions that are best for him....may not be what I want but it is what he needs and that is what needs to be done.

So, as we approach his eighth year on this Earth, to all who know my son, you have been blessed. I have one heck of a FIGHTER and TEACHER on my hands. If you haven't let him touch your heart, then it is your loss. He shows such amazing strength each and every day as he tries to live in this world.


Trenton,
Keep up the fight. I know it has been a rough year, but you are doing amazing things lately. I am so proud of you. The way you work so hard each day through your battles and trials is beyond me. When I cry because it is hard on me, I just tell myself that it is so much worse for you. So thank you for keeping me in check!
I am so honored and blessed to be your mom! God really did know what he was doing when he paired us up together. I wouldn't change being your mom for the world!
I will hold your hand, I will be right there fighting with you till the end. I promise!!!
I will NEVER give up hope!! You deserve the best and we will just keep on fighting for our best.
I love you T-man!!!!
Always and Forever!!

Mom

















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!!!!