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....

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 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 know the whole running errands with your kids things......I don't know what that is 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, name it.....I can't be it.
That is what SEVERE AGGRESSIVE AUTISM 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 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 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.

 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.


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!!!!
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 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 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 learn how to deal with his severe sensory processing challenges, to learn how to cope with his 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 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 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.

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!!


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 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.