Monday, December 10, 2018

One Week.....

It has been one week. One week without you at home. One week since my heart was broken like it has never been broken.

For over eights years my life revolved around you. It still does but in a different way.

When you slept, I slept. When you were awake, I was awake.
I laid awake in bed with you for countless hours each night and watched you struggle to fall asleep while we watched Baby Mozart.
I took that sigh of relief when you finally closed your eyes for the night, or should I say for the few hours that you slept.
"I wonder how long he will sleep tonight?"
"Will he awake and have a good day? Or will he awake  and have a day of aggressive behaviors?"

For over eight years I did your morning routine with you every single day.  Some mornings it went smoothly, some mornings were a little rough.
I brushed my teeth every single morning with you pulling on me. I ate my breakfast chasing you around the house. I would make coffee and it would stay in the pot, not touched because time barely allowed me one sip of coffee let alone a whole pot.

For over eight years, I have bathed you. I have showered you. I have helped you follow your bathroom routine. I made your visuals....I made your social stories....I did it all for you every single morning and night.

For over eight years, I heard your noises around the house every single day. This past week, I have caught myself every day doing what I did best and that was listening for your noises so I knew you were okay.....but I don't hear them anymore. I knew your noises better than anyone. I miss them. My heart breaks. I need to hear your noises.

For one week, I haven't heard the noise of the trampoline. Your swing has not been swung on. It still has your stuffed animals in it just like you left.

For one week, your room has been exactly how you left it. I can't bring myself to clean it or change a thing. Your computer sits there but you haven't been on it. I walk into your room and I stare at the crack across the screen of your computer and recall the day that you ripped the computer out of the wall and threw it across the room. I glance up and see the patched hole in the wall in your room from the night you threw a toy so hard it went through the wall. I look up at your ceiling fan and see the shattered fan. The fan that your broke in one of your many aggressive meltdowns. 

I walk downstairs and see the wax all over my dining room wall from the time you kicked my wax burners. I see the spots on the walls with my missing d├ęcor that you broke.  I see my new TV that I had to buy after you destroyed my other one. I see all the deadlocks on my doors....the alarms... the stop signs....everything was done by you and for you. I see it everywhere this past week. Even though I don't have to deadbolt myself in the house during the day, I still do out of habit. I don't have to set the alarm but I still do. I do it all because it was my life. A life that became our normal. A type of normal that most people don't live but it was our normal and now it is hard to let it go.

 I go to turn on the baby monitor each night...I turn it on even though you are not in your room. I wake up each night listening for you like I used to. I anticipate you opening your bedroom door each morning, running out of it like you always did, and coming to grab me and take me to your room...…but it doesn't happen now and it hasn't happened in a week.

I miss you more and more with each passing minute. I cry. I pray. I get sad. I get angry.
I find myself walking into your room at times so I can smell your smell. Oh how I miss you!

If I could change things, I would in a heartbeat.  If I could make your body better, I would. I would give you my mind and body if I could. I have tried my best to move mountains for you, to keep you home, to keep you safe, but autism just kept winning. I tried. I gave it my all. I sacrificed everything to help prevent this but I didn't win.
The pain is real. This pain hurts more than words can say.

I pray this is just a short chapter in our book. A small, chapter full of more heartache and grief as we are separated but a chapter that will put our family back together in the end.

For over eights years, we were never once separated. I tucked you in bed every single night. It hasn't been easy as a single mom, but we did every single day and night by ourselves.....every single day and night.

The hurt I felt when I had to turn my back and leave one week ago will be worth the joy when I get to bring you home again...the joy, happiness, and excitement for our life after residential treatment is what is helping me to get through each day without you now....until then I have to trust God and the bigger picture.

Always and Forever even when we are separated T-man.















Saturday, December 1, 2018

The Next Chapter

Special needs parenting is tough. By far the most difficult thing I have ever done in my life.
I remember shortly after Trenton was diagnosed,  I was told that autism parents often have to invest and do the things that most parents do after their child turns 18.

Unfortunately, many parents of special needs children go thousands upon thousands of dollars in debt each year trying to help their child. Often times, the child has to leave home to get the care they need and to live at a residential school. (Neurotypical kids leave and go to college and become thousands of dollars in debt after high school......not when they are a child)

Every human being, needs a chance to learn academics and social skills. The majority of the time, it is necessary to teach children with special needs the most basic life skills and self care in order for them to live a functional life.

In most cases these needs are met through public and/or private schools. However, in some cases, the need for access to care, therapy and consistency of interventions during all waking hours is necessary.

Some special needs, such as autism, can affect all aspects of a person's life, far beyond the classroom.  Vocational skills, life skills, self-care, relationships, and much more must  be addressed.

When Trenton was a toddler, I knew not only from my background of special education but because I did so much research, that all interventions had to be put in place in order to make him the best he can be in life. The severe end of the spectrum can have very severe challenges and I knew time and therapy was crucial!

For the past four years and four months, Trenton has been at Harsha Autism Center receiving ABA.  I moved to another state in order for him to receive this.
Over this time, Trenton has made some progress but overall, his behaviors are getting worse as he gets older. His aggression is getting scary and dangerous.
He is getting bigger and stronger and I have to look at the future.
I won't always be here to help him. I am a single mom and can barley control him now. What will it be like in a few years if he is still like this? Will he hurt me badly? Will he hurt his brother? himself? His behaviors are so severe he could accidently kill himself.

In the back of my mind, I have been so scared for a year now. It has been brutal. Honestly, I don't even feel like describing his behaviors....no one can even fathom what I have been through unless you live it yourself.

Trenton only went to public school for three hours a day and then he went to Harsha Autism Center for the rest of the day. Trenton's day was from 8-5.....school from 8-10:40 and ABA from 11-5.....and this was still not enough help. Trenton's needs are just too severe.

The school district exhausted all of their options....Trenton had a personal educational assistant..then they tried 2-3 staff on him to help him...nothing helped! He was still being aggressive, attacking and hurting others and destroying things. The school exhausted all their resources and they found him unfit for public school. Therefore, he was moved to Harsha Autism Center where the school funded him. However, Trenton already had four years at this place and still no  huge gains....again his needs are just too severe. With that said, the school's final option is residential school.

Applying for residential schools are normally several months to year(s) process. It took less than a month for Trenton after I agreed to look into it. I have prayed hard....I have prayed and prayed... and I fully believe that God opened the door for this opportunity.
With that said, Trenton will be starting at a residential school on Monday. I can't even put into words how broken my heart is.

This is the final box for me to check off my list... the final option to help him. I have to try this to see if it will help him. Trenton needs more than just 7-8 hours of one on one help. He needs around the clock help. I can't provide that. I have tried and looked into everything ….I wanted so badly to hire a PT caregiver for him when he was at home but I couldn't afford it. It is to the point that it is dangerous to keep him at home...for the safety of him and Andrew, I have to try this final step.
Trenton will be attending a full school day at his residential school and then having a structured schedule in the evening and at night. I hope and pray that through this, he can overcome some of his behaviors and return home ASAP!

I have heard several success stories where a child has went to a residential school for a few years and returned home and was so much better! I hope and pray that this is our outcome too! I have no option...I have to try this before it is too late......before he is too big and dangerous. I have to try and help him to get better now!

I will post more details about how our journey came to this point. For now, this is all I can write. I am tired and exhausted.
I am prepared for some to not understand and judge....but I could care less. I know what I have lived 24/7 for over 8 years.... I know how crucial it is to try and help him now before it is too late....I am educated and if you judge, you are clearly not educated in severe autism.

No parent wants to be faced with the decision I have had to make. No parent wants to hear the R word and I have for a year now. My heart is broken. My heart is in pieces and I am not sure it will ever be put back correctly. I am a mother of a child with severe special needs and it just plain sucks to tell you the truth! I hurt but if it will help him, then my pain is worth every second of it.

I am a woman of great faith and I will survive and get through this. I have learned to live with daily grief and to keep on smiling....I will get through this and the Lord will help me.

Here is Trenton jumping with one of his therapist yesterday at Harsha Autism Center.

There are much more details on how we got to this chapter in our life...so stay tuned for more.

Wednesday, November 21, 2018

Grandpa

November 8th, 2018
My alarm went off as usual at 5 AM EST. I get up and walk straight to the bathroom. I immediately hear my phone notify me of an incoming text.
"Who is texting me at 5 AM?" I thought.

I pick up my phone and it is from my mom.
"R U Up?"
My heart dropped immediately. My mom never texts me at 4 AM her time, 5 AM my time. Her texts are never like that. I knew it was not good news.
"Yes" I replied and she called.

For the first several seconds all I heard was her crying. I knew something happened to someone. Finally, I was able to gather from her that it was Grandpa. He was life-flighted to Champaign Carle Hospital and he was not going to be here much longer. I gathered something about him falling and blood on his brain.
I got off the phone and dropped to my knees in tears. The man who was my hero was about to leave this Earth and I was not ready for it.

Andrew woke up and knew something wasn't right. I told him that Grandpa-Great's time was almost up on Earth. Andrew had just wrote a Veterans's Day letter about Grandpa. Andrew was turning in his letter to his teacher that day and reading it to his class on the exact same day Grandpa was being called to his eternal home.


I held it together and got the boys off to school and I headed straight to Champaign, Illinois. I had an hour and 45 minute drive to get there. I cried. I prayed. I just wanted to make it in time.

As I walked into his hospital room, the first person I saw was my younger brother and then my mom. I scanned the room, hugged and cried on my mom and sat by his bed.

The man who I always looked up to had only minutes left with us. I held his hand and watched him breathe. I held the same hand of the man who served his Lord, that served his country and state, and his family. The hand of one of the most incredible men I will ever know.



As I sat at his bedside holding his hand, flashbacks went to the last time I saw him which was October 27th and 28th. My boys and I traveled back to Illinois to visit my parents and grandparents. I have not been able to go back and visit as much lately due to Trenton's needs but I am so glad I made that weekend visit possible.

Grandpa was nearly blind in his final days and he was going in for an eye surgery the following week. The last words Grandpa spoke to me was, "I'm going to tell my surgeon he needs to do a good job on my eye because I have an angel on this Earth and I need to see her face again."
My last words were, "You will see me again, Grandpa. I just know it."
I hugged him and said I love you. That was our last moments together.
I never imagined in that moment, the next time I would see him would be his final moments on Earth.



My grandfather was an incredible man. He was a man full of wisdom and he was always willing to share what he had learned during his life. There wasn't one time that I have sat down with him through the years and not listened to one of his WWII stories, state trooper stories, or a Bible story. He loved to tell stories and had the best memory of any 90 year old person.



My childhood memories consisted of going camping with him and Grandma to Bluegrass festivals. If I had a sporting event, you can bet him and Grandma were there cheering me on. Anything I did or any of their grandchildren and family did, he was right there supporting, offering advice, and sharing the moment.



The best memory I have with him was the day he baptized me. I was thirteen years old. It doesn't get any better than being baptized by the man who led his family all to the Lord.

I will never forget when I was 19 years old and had to have a very risky 7 hour surgery to help correct my Thoracic Outlet Syndrome. I just woke up from surgery, I could barley breath with my collapsed lung, couldn't move the right side of my body, and one of the first people to walk into my room was Grandpa. Our eyes met and he busted out in tears.He held it together and talked to me for a few minutes and then he had to walk out. He couldn't stand to see me in so much pain



In my college days and in my twenties where ever I moved to, Grandpa was calling the church to make sure someone would make me feel welcomed at my new church. He wanted the elders and the preacher to know that his granddaughter was there and needed to be taken care of. He always took care of me.

 It was when I became a mother, that I built a deeper connection with him. I leaned on him in ways that I never thought I would have to.
Trenton was the first person in my family that had special needs. Trenton not only opened my eyes but he also opened the eyes to many of our loved ones and Grandpa was one of them. I will never forget the joy in his eyes on the day Trenton was born. I had lost a baby before Trenton and Grandpa and Grandma wanted to come to make sure everything was going to be alright this time. They made the two hour trip to see my new bundle of joy..the joy that would change our entire family.



The last eight years of Grandpas life, he spent every day praying for Trenton, Andrew, and myself. Grandpa and I had numerous conversations about God and autism. Grandpa supported me in everything I did and helped me in so many ways. When I didn't have a car because all of my money went to therapy for Trenton, my grandparents and parents made sure I got one. Grandpa made sure I was taken care of along with my sons.

"I know you question prayer Angie but keep on praying." He told me one day. 

I will never forget the day he told me I was an angel. Grandpa took my hand and started crying, he looked at me and pointed at me with his other hand, "I believe in angels and you are one of them. You are my angel. Everything you do for Trenton. You are my hero." He told me that almost every time I saw him the last few years of his life.
Grandpa believed in me. A Godly man full of wisdom who had fought in war, seen the most horrific situations in his state trooper days, grew up in a time of hardship, but nothing had opened his eyes and gave him a different perspective on life than my son, Trenton. 

The last eight years, every time I saw Grandpa, our connection and love grew deeper and deeper. He saw the road I was traveling with autism, he knew the trials God gave me but he also saw my strength and perseverance. He told me all the time how brave and strong I was but I never told him I got my strength from him.I get a lot of my strong personality, strength, and love from the most incredible man I will ever know. 

So, as I stood over him while he took his last breath on this Earth, a little piece of my heart went to heaven in that moment. 
"I will see you again." The last words I spoke to him. Well, they were actually true words. He might not have seen me anymore on Earth but he will see me again in heaven when we both have no more trials and heartache. Most of all, I look forward to the day Grandpa sees Trenton in heaven....no autism...no tears....just joy!

 Our last four generation picture. This was August 2017.
October 2017 The boys always loved to trick or treat at Grandpa Great's house.
 We had a big 90th birthday celebration for him last year on his birthday. It was his last one.
 Grandpa and I at his 90th birthday party.
 My last picture with Grandpa. This was June of this year.


Trenton and Grandpa's last picture taken. This was June 2018 as well.

2 Timothy 4:7-8
I have fought the good fight, I have finished the race, I have kept the faith. Now there is in store for me the crown of righteousness, which the Lord, the righteous Judge, will award to me on that day—and not only to me, but also to all who have longed for his appearing.

He had the most beautiful funeral I have ever been too. State troopers on guard at his casket, full military rights....it was beautiful.


Sunday, November 18, 2018

Trenton Update

How is Trenton?

I apologize that I have not had an update lately. Life has been chaotic and as most of you know, blogging comes last.

This year in general has been a very rough year for Trenton. He has declined a lot in many areas but has made some gains in other areas.
His big decline is in his behavior. The last week in October he quit going to public school. I only had him going to public school for 2.5 hours each morning anyway. However, after lots of data to support the fact that Trenton is not a public school kid, the school system started funding him to go to Harsha Autism Center. He already had been going to Harsha the last four years as an insurance kid. However, Harsha Autism Center is the next step which is considered an alternative placement for kids with severe needs.

So, how is he doing with just going to Harsha all day?

He is about the same. There is no progress in his behaviors but I expected this. He has been at Harsha for four years. Trenton is making progress with his ability to produce words at times but not with his behaviors. It is like his doctor said....he is at a difficult age where he can't get any stronger medicine until he is older. Therefore, we just have to battle through this. However, it is difficult.
Again, this week he broke a computer at home. He continues to display aggressive behavior.
He does have some good days....some bad days....some days where he is good most of the day and he might just have one aggressive outburst....he has days where he has no aggression but is extremely hyper and impulsive...you just never know with Trenton. Even on his hyper and impulsive days he is very dangerous because he isn't aware of danger and gets out of control.

I wake up and I never know what I am going to get. Am I going to get attacked before work? (attack is hitting, scratching, clawing, pulling hair, biting, kicking) Is he going to attack Andrew while I am trying to get ready for work? Is he going to attack us after work/school? What is he going to break today? Will he try to escape again?....the questions are endless... the stress is endless....it is never ending 24/7stress and chaos. He needs someone with him 24/7 and I can't do that nor can I afford that.

My heart breaks daily for Trenton. Living with this daily grief is hard. Watching him so distressed every single day is hard. He struggles. He can't control himself. I would do anything to make his life better.
I love the days where he can smile. Yes, a simple smile can mean the world to me. I know in that moment he is feeling good. He isn't fighting the chaos in his brain....he isn't struggle...he is happy. When he smiles...he has a smile that can light up the world!

So, for now he continues to go to Harsha Autism Center. He continues to work on his ABA program there while also working with me, his special education teacher there.
Its amazing how smart he is academically. He can read words that most first and seconds graders can't read.......but he has no control over his bipolar outburst that makes his autism very challenging.
So, for now we continue to live and do what we need to  in order to survive and get through the day.

In the picture below he is working at Harsha Autism Center.