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!!!!!