Thursday, September 28, 2017

Andrew

Andrew: "Moochies, you are the best ever."
Moochies: "Thank you Andrew. That is so sweet of you to say."
Andrew: "You are like a guy and a girl. You are like a mom and a dad."
Moochies: "What makes me like both?"
Andrew: "You like sports and help me with sports so your like a guy. You like the color blue and blue is a boy color but you're a girl. So you are like both."

LOL!! Lil A you are so funny!!

Wednesday, September 27, 2017

Andrew's Picture



Andrew drew me a picture the other day. He said it was a picture of him handing me flowers. He is a sweet little boy!! He gave it to me on one of the worst days we have had in a long time....he knew Mommy needed a smile!


Tuesday, September 26, 2017

Eye Dr.

When your child can't communicate, many things become guessing games. For awhile now Trenton has cried for no reason. During these episodes, he will say, "hurt", "eye hurt". This always left me thinking, "Does his eyes hurt?" Or "Is he saying, I hurt?" Or "Is this his way of saying he has a headache?" The questions....so many!
Long story short...his doctor referred him to a specialist in Indianapolis. Trenton had his appointment today to check out his eyes. Since no one has e...ver been able to perform a basic eye exam on him, he had to see a specialst....which is normal in our lives. Trenton sees many specialist as I am sure many of your children with classic autism do. Not many typical doctors are able to perform exams on non-verbal classic autism individuals.
Anyway, the appointment was two hours long. It was brutal but we survived. Trenton screamed at the top of his lungs in the waiting room. He cried. He ran. He paced. He hit. He kicked. He had an autism meltdown.....but...we survived only through the grace of God! It was the kind of appointment that left me in sweat everywhere!
Good news is that his eyes are great! So as of right now, I am guessing he is suffering from headaches during these episodes.
After today, I am really not sure how I will ever be able to manage these appointments as he gets older. It was much easier when he was smaller and not as strong. As a single mother, I have no choice and I am sure we will survive somehow.
Today was rough but hoping and praying for a better tomorrow!
Oh and while I was gone all day at his appointment....I came home to a freshly mowed yard!!! Woot Woot!!! My dad made the two hour trip to mow my yard!!! So thankful for my parents! The boys and I make it on our own but if I ever need them, I just need to call and they are here!

T-man wanted my glasses. He did not like getting his eyes dilated.
 Nana let him get a new stuffed animal after his appointment.
 We needed comfort food after our day

Sunday, September 24, 2017

Most Perfect Brother

"I have the most perfect brother in the world, Moochies." Andrew said Friday on our way home from Harsha Autism Center.

Andrew LOVES his brother!!! I instantly cried. I talk to him all the time about Trenton and Andrew is getting more and more understanding as he gets older.

Friday, September 22, 2017

I volunteer in Andrew's class. He loves when it's my day to be at his school!


Thursday, September 21, 2017

Classic Autism. It's Real. It's Out There

Autism. One word describing a thousand different stories.

How can one word describe so many different types? How can one word describe a kid that can speak and a kid that can't speak? How can one word describe a child that can sleep and a child that isn't able to sleep?

I am not going to lie! I HATE autism being one word to describe so many different people and let me tell you why.....

My son, Trenton, has classic autism. Some times it is called severe autism and now the technical way to describe it is level three autism.
My youngest son, Andrew, has a diagnosis of autism, too. Some times it is referred to as high functioning autism, formally known as Asperger's Syndrome. To many people, he is just the "different", "quirky" kid.

Andrew is in a regular classroom and can learn just like any other typical child. The only thing is he had mountains to climb when he was younger and he climbed them! However, he simply has a few unique things about him that he will battle with in life. He will manage those and will make it through life.

Trenton is a different story! Two boys with the same diagnosis but two TOTALLY different outcomes.

Personally, I enjoy watching the T.V shows these days that have individuals with autism on it. I was flattered when Sesame Street came out with their character with autism. However, where are the classic autism cases? Where is the media and TV shows displaying a mother wiping the bottoms of her teenage sons? Where are the shows showing a child playing and rubbing his feces everywhere?
They are few and far between compared to the high functioning autism that we see in the media.

Where are the stories of mothers fighting sleep deprivation because they are up all night?
Where are the stories of the single mothers who are left by themselves not able to work because of their child and left forever in poverty?

Where are the stories of meltdowns and behaviors?
Where are the stories of grown men in pull-ups? Or the individuals with self injurious behaviors?
We don't hear the noises....the groans and moans of a non-verbal child with classic autism!

We don't hear about stories of families living behind special  locks to keep their child in the house. Or the service dogs trained to protect them.
We don't hear the stories of people with classic autism escaping from their house and being killed.

We don't see or hear of the stories of mothers being kicked, hit, and abused from their child.
There isn't reality shows of families raising children and taking care of grown children with classic autism. If we did, it would open the eyes of many people!

For five years I have attended autism walks and participated in any type of autism event that I could. However, it just left me bitter. My son was always the one that couldn't handle it.....the one having the meltdown....the one that had to leave...I rarely saw the individuals like my son. You know why? Because they can't! Their bodies don't allow them to.

My son's autism isn't how the world portrays autism. It's not like 90% of the cases of autism that we hear about.

My son has the type of autism that leaves me with a forever baby....even when he is a thirty year old man, he will be like a baby. The only difference is instead of weighing ten pounds, he will probably weigh 200 pounds.

I listen to constant screams every single day. I listen to his upset noises that are often followed by aggressive behavior.  I clean up daily bowel movement messes. I watch him struggle and in agony over his anxiety and OCD that takes over his life.  I watch and handle his meltdowns every single day and sadly, he is getting so big I can barely handle him anymore.

Instead of wiping a little bottom, I will be wiping a grown man's bottom one day.
Instead of calming down a fifty pound meltdown, I will may be calming down a 200 pound meltdown.
Instead of a cute 7 year old taking his stuffed animals everywhere, he may be a 17 year old taking his stuffed animals with him one day.

Classic autism is 24/7 care from the time of their birth to their death. 
Who will be taking my place when I am gone one day?

Classic Autism. Severe Autism. Level Three Autism. Whatever you call it,  it is real.
Autism isn't just the "quirky" kid. Autism isn't just the kid that everyone calls "different". Autism isn't just the kid with OCD and anxiety.
All autism cases are challenging and come with struggles. I know! I am raising both ends of the spectrum. However, the difference from one end of the spectrum to the other is a totally different ballgame. They aren't even in the same playing field.










Tuesday, September 19, 2017

Happy Video


A link to a short video of Trenton's happy noises and giggles! It makes my heart so happy when he is like this!

https://www.youtube.com/watch?v=Guz1jREf-lU

The Questions

Are you the parent of a non-verbal child? Maybe the parent of a child who can only say a few words? I just want you to know, I understand you! I understand the questions, thoughts, and emotions that you have. It goes far beyond our child not being able to tell us what they want....WAY BEYOND THAT!

I wonder if he has a headache? Does he feel dizzy when he is sick? Is he queasy today?
Does he have body aches when he is sick?
Does his throat hurt? Does his ear hurt?
Does he have water in his ear after swimming?

When he is on medicine, I'm suppose to watch for side effects....How can I do that?!?! He can't tell me he has blurry vision, dizziness, upset tummy, etc.

Do you ever have an itch that you can't reach? Don't we all? Trenton can't tell me to help him with that.

I wonder if he is saying, "I love you too, mom." in his head after I say it to him?

I wonder what he dreams about? He can' t tell me if he does. I wonder if he has bad dreams and wants to tell me about them? Does he know a dream from reality?

Can he see okay? I wonder if his eyes are good or does he see things blurry? No one has been able to do an eye exam on him.

On the days that he is at home all day, I wonder if he ever wonders if he can go to Nana's house. I wonder if he wants to go to the park? Zoo?

I wonder what juice is his favorite? What kind of cake does he like best? White? Chocolate?
I wonder what his favorite episode of Sesame Street is? Will he ever be able to tell me?

What's his favorite color? Do certain people annoy him? Does he have a favorite therapist?  I wonder if I am annoying him in the van while I am singing out loud?

I wonder how long he has been holding his urine? I often find myself wondering after I notice his potty dance when we are out in public?

Often times you ask the people in your vehicle if they are warm or cold. I wonder if he is cool enough? I often ask myself in the summer time. I wonder if he is warm enough now?, I ask myself in the winter?

He loves animals! I wonder what his favorite animal is?

Does he wish he had friends? I wonder if he likes someone at school or at Harsha Autism Center and want to have them over? I know he doesn't play with other kids but deep down I know he likes to be around them.

Does he know he is different? Does he wonder what it is like to be me?

I find myself sad on some days. I know he wants to talk but can't. I long for the day for him to walk up to me spontaneously telling me that I am the best mom ever!! Doesn't every mom want to hear that from their child?!

He can't me he doesn't feel good....or that he just simply feels BLAH!
He can't me those type of things! Will he ever? Or will he forever live trapped in a body?





Monday, September 18, 2017

Sleep

This is T-man this morning. He fell asleep ten minutes before the bus comes. I was begging and praying for him to go back to sleep at 3,4,5 AM but he couldn't. Instead he ran circles around my house, squealing, and doing his thing non-stop at 100 mph. He doesn't stay put in one spot for more than 2 minutes. IT IS EXHAUSTING BECAUSE HE IS 24/7 CARE AND HAS TO BE WATCHED ALL THE TIME! When he moves from room to room every two minutes at 3 AM.....IT"S NOT FUN!
Autism is a struggle folks! ONE. BIG. STRUGGLE.
His sleep challenges are NOTHING like they used to be so I will take what he does now in a heartbeat over what we have been through. However, I live my life in fear every single day and night because I am so afraid he will go back to literally not sleeping at all. Right now, he wakes up for the day any time between 2 and 330 AM and we are up for the day. UGH! I hope this will pass soon.

I never know what each day will bring with severe autism. NEVER KNOW! I just live for the day and take what it brings and hope and pray for a better day the next day.


Sunday, September 17, 2017

Wednesday, September 13, 2017

What Would Jesus Do?

John 15:13
Greater love hath no man than this, that a man lay down his life for his friends

I am left in goosebumps every time I think about Jesus dying for me....for you....for all of us! The above verse is a very inspirational verse....there is nothing that can describe a love so strong that you would die for that person....that you would give up your life! Amazing!

I don't know if I will ever give up my life for anyone. I guess we will have to see how life plays out for me. I have most definitely died to my Earthly life that I dreamed about.  I have died to a life of ever making a choice for myself.  God blessed me with a little boy who has autism so severe that if I want him to be the best he can be in his life, I have to make every choice for him...not me!

I was scared to death when I picked up and moved to Indiana with the boys. I didn't know one soul! I was by myself. I wanted so badly to stay in Illinois where my life was. Our only family and friends were there. But, God made it possible for me to move to Indiana to give Trenton what he can't get in Illinois. So I did it! I died to the life I wanted.

What would Jesus do if he were me? Would he stay or would he go the land that would help his child? Jesus makes it clear in the Bible what he would have done and that is exactly what I did.

Various prophets in the Bible are called to go to places. Most of them were scared and had no idea what God was doing for them. God called and told me, through other people, to pick up and go to Indiana. I still don't know why God has done the things in my life he has done. I probably won't ever find out. But, it is what it is. We are called to live our life for God and to live like Jesus. He gives us our life but leaves us with our own free will in order to find out our true character and heart.

Some people are given more obvious trials in their life such as autism. Other people are given lesser trials. However, we are all placed with situations in our life that God uses as a test. A test of our character to see if we really have Him living in us. Some peoples test are more direct, such as their child or a loved one. Others test are more indirect. It could be a stranger that crosses your path, a neighbor from down the street, an acquaintance, etc. In one way or the other, we all face circumstances that define our character and who we really are.

If Jesus living in you? Are you making your free will choices in life to please him? Is your choice what Jesus would do?




Saturday, September 9, 2017

Zebra

He normally takes some items with him. However, he wanted his big zebra on Friday.



T-man on Google

I went to google something the other day. I guess Trenton had just been on Google earlier. LOL!!! At least he wrote my name in there:)


Thursday, September 7, 2017

Faith-Doubt-Fear-Anxiety

Hebrews 11:1
 Now faith is the substance of things hoped for, the evidence of things not seen

Faith. It is hard to hold on to on some days, especially everything I have gone through. 
Have you ever harbored doubts about your faith? It is okay to admit it. In fact, many of the great heroes from the Bible had doubts at some point in their life. 
I have full faith that God has a plan for my life and that he is working through me to reach others. However, when hope leaves you at times that the dreams you want may never come true, it leaves you with doubt.

Abraham and his wife Sarah are two of the most important figures in the Old Testament. Both followed God faithfully through a lifetime of challenges and trials. But they couldn’t quite bring themselves to believe one promise God made to them: that they would give birth to a son in their old age. In fact, they both laughed at the prospect. Once their son Isaac was born, however, Abraham’s trust in God had grown so great that he was willing even to sacrifice that promised son if God asked.

We live in different times than the Bible era. We don't hear a voice from the heavens like they did. I sure wish I did. I wish I could physically hear God's voice. 

Whenever I am going through a time of difficulty, when it seems that God is ignoring my prayers, its the time to be on guard. It was in the middle of enduring fiery trials that Peter wrote, Be sober, be vigilant; because your adversary the devil, as a roaring lion, walketh about, seeking whom he may devour” Then he added, Whom resist stedfast in the faith, knowing that the same afflictions are accomplished in your brethren that are in the world. But the God of all grace, who hath called us unto his eternal glory by Christ Jesus, after that ye have suffered a while, make you perfect, stablish, strengthen, settle you. (1 Pet. 5:8-10).

Our trials do not mean that God does not exist or that He has lost control as the Sovereign of the universe. We have to hang on by faith, knowing that He will use our trials to strengthen and establish us. As Peter tells us, “Humble yourself under the mighty hand of God … casting all your anxiety upon Him, because He cares for you.” Don’t doubt God’s sovereignty or His love when you go through extended trials.

It's hard not to doubt. It's hard! Really hard! Just like you I want to shout, "WHY", "Aren't I strong enough, Lord? What more do I need?" 

I want to shout that every single day. However, I don't shout it. I just talk to him about it. It's hard to cast all that anxiety to him. Really hard. On most days I probably bend God's ear talking to him more than anyone. I search for meaning of my life. I have made lots of mistakes in my life. I am not perfect. The only one perfect human was Jesus Christ. The rest of us are nothing but sinners. In reality, I don't deserve what I want in life. I've been blessed with more than enough.
However, I am human so I have struggles with casting all my anxiety and doubts away to the Lord. I let it weigh on me daily. Some days, I let it control my life. Am I wrong by doing that? Yes. But, I find comfort that many of the great prophets from the Bible struggled with doubt, fear, and many of the issues that we struggle with.

When life really gets me down, God blessed me with my one true amazing angel from heaven and that is Trenton. He sure is my daily reminder that I am blessed. I am a fighter because of him. Because of him I know God better and have a much better daily walk. So in the middle of my anxiety, doubts and fear.....I have learned that I am one lucky woman!

Death-Leaving Behind a Dependent Child/Adult



There is one thing in life that is a guarantee that we all will do and that is die. We all have to face death. There is no escaping it. Once we all realize in life that we will eventually die, we hope that we and our loved ones follow the natural cycle of life. Our parents raise us and take care of us and then when our parents are in their final days, we take care of them until they take their last breath. In most cases, you get the return by your children who take care of you in your final days on Earth.
That is what we say is the natural cycle of life and death. We all hope for a peaceful death for our loved ones and ourselves.

What about families raising children who will always be dependent?

I will tell you that death for a mother raising a child who will NEVER be independent is a scary thought. It weighs on us daily. We do our best to not think about it but it is always in the back of our mind. There is a laughing joke in our autism world how we want to die the day after our child or how we want to live to be 120 years old so we have taken care of our dependent child during their entire life. I've seen the memes on the Internet that says these things. They aren't made for no reason at all. They are made because it is a real issue! It is real thoughts that parents like I have.

No parent should ever have their natural cycle of life interrupted by burying a child. Whether it is a baby, teenager, or young adult...no parent should bury a child. I have no doubt that is one of the worst pains a parent can go through.

Another pain that no parent should have to go through is the pain of closing their eyes in death knowing they are leaving behind a child, who is a grown strong man, but who is a dependent. Every mother dreams of having a healthy baby that will grow up to be a healthy, independent person. What happens when the natural cycle of life is broken?

Who is going to take care of them? Will he end up in a facility where they are mean to him?
Will he wonder where I am for the rest of his life? Do you think he just thinks I walked out of his life? Who will manage his Social Security? Will people take advantage of him and steal, abuse him?

The questions. I could go on forever.

So do you understand now why a special needs parent of a dependent child fears their own death?

My decisions in life aren't made for myself. They are all based on a little boy who has a disability so severe that it will never allow him to be an independent man. Instead, he will always be dependent on me, his Mom! I have a child for the rest of my life!!!

Every thought that goes through my mind.....every decision I make is for him. Will it better him when I am dead? What can I do now to make him just a fraction better for when he is on this Earth without me?
For example, could I put him in a full time special education program and save money on less therapy? Sure I could. But is it what is best for him? NO! What is best for him is the intensive one on one ABA therapy that is scientifically proven to make a difference in kids like Trenton. I have witnessed what full time ABA has done the past three years for him and it is amazing!

Will I forever live in poverty just to make sure he can get the therapy he needs while it is accessible to him,  while he is still in the early intervention part of his life? You betcha!

It's sad. It's a life I wouldn't wish on anyone. But, a single special needs mother lives daily with one of the most dreaded, worst pain that any parent will endure and that is closing their eyes in death leaving behind a dependent child/man.

In a way we all dread our death. No one wants to leave behind loved ones even if we did live a long, healthy life with healthy independent children with their own families. Even when life is perfect with no barriers, no one is ready to leave their loved ones and no is ready to say good-bye to their loved ones.  So you can only imagine what it is like for parents like me. You can only imagine what it will be like for individuals like Trenton.

I think about it daily. There is rarely a day that goes by where the question, "What will happen to Trenton when I am gone?" doesn't cross my mind.

Here is a link to an article that I was asked to write a few years ago on this topic.

https://autismawareness.com/what-happens-to-my-children-when-i-am-gone/



Friday, September 1, 2017

Behavior Chart


He is very proud of his good behavior chart!!!! Keep it up Lil A. Moochies is proud of you!

I See Our Story

As most of you know, I share my story! I believe in people talking about their life and sharing their story to others. You never know who you are going to inspire or who you might help. After all, people have always shared their stories. The Bible is full of stories about people's lives.

I took the above picture before school one morning this week. I love this picture for many reasons. Most people would glance at the picture and see a loving mother surrounded by her two children. I am always surrounded by my boys. Were one goes, we all go!
But, if you came across this picture somewhere and didn't know us, you would have no idea how strong the three of us really are. One would have no idea of the perseverance we walk through daily. You wouldn't know how courageous my boys are.  It is so easy to see a picture somewhere of a happy family, like mine above, and go on to the next picture you come across on Facebook or wherever you see the picture at. Although, I believe a picture can speak many words, a picture also doesn't tell the other details.

Maybe it is the kind of week I've had......or maybe it is a post I read on another woman's' blog who inspired me to do this post...I'm not sure but I want to talk specifically about what you don't see in this picture.

I look at this picture and I smile, just like you:) But, I also see the tired look in my eyes. I see a mother who  has thrown her hair up in a ponytail good enough to look decent enough to rush out the door to put her two boys on the school bus. 

I see a mother who hasn't done one thing for herself in life since she has had these two little boys. Before she thinks about herself, she always makes the decisions on what is best for her sons.

I see a mother who stays up late working on her son's AAC device to make sure it is where it needs to be,  working and preparing for a service dog, and all the other things that come with a child with severe autism.

I see a lady whose ex-husband left her and her children in the middle of one of the hardest times in their life. However, I see the hard work the mother has done in two years since that day and the progress is remarkable!

I see a mother who has worked very hard to get the sons to overcome their fears and regression from the divorce.  I see the two little fighters in them!

I see a mother who has man-handled autistic meltdowns, public humiliation, sleep deprivation, isolation, loneliness, social communication meltdowns, anxiety meltdowns, two full years of intensive potty training. I have been pooped on...peed on....hit at, kicked at, scratched at....muscles torn and a body full of aches from handling the behavior issues of autism all by herself.

I see a lady who has made phone call after phone call to insurance companies, therapy offices, state offices, school systems, and about any other organization that has anything to do with autism in a 500 mile radius, fighting for her children.

I see a mother who stays up late researching autism to find out exactly what she needs to do in any kind of situation that might arise with her children.

I see a lady who does all the work of preparing and prepping for their life!

I see two little boys with a lot of sensory problems. I see a little boy who has a hard time making friends. I see the other little boy who lives in his own world daily.

I see a little boy who keeps getting bigger and bigger who doesn't know danger.
I see two little boys who get overstimulated easily and can't control their behaviors due to it.

I see all the tears shed from the lack of being able to communicate.
I see their quirky and unique behaviors.
I see their strengths, their weaknesses, and their love.

I SEE OUR STORY!

Yes, I love this picture! It is a beautiful picture of what my life looks like.....two little boys who are always by my side! It shows our adorable family of three and how we can look so normal in pictures and fool the whole world. However, what goes on behind the scenes is what really matters in life. It's the fight behind the pictures. It's the actions in your daily walk that a picture can't show.

Even though I may feel tired daily and wish I could make one decision for myself in life, there is nothing  I would rather do than to raise these two boys up in life! The love we share is unstoppable! We have our little family traditions and cute sayings we do for each other. Deep down we are a family, just like yours. We do things much differently. We toot to our own horn. It all has became our normal!
Our life is definitely not the white picket  fence American dream life. The three of us battles trials after trials daily. However it is one amazing life and I wouldn't trade it for the world!

So what is your story behind that happy, loving picture of yours? Don't be shy. If God granted you the ability to be able to share you story, share it! Help others!

God has blessed me in many ways. I am one very lucky autism mom!


Paul

Sometimes it just appears that every one else gets the things they want and you are left by yourself on a journey far from what you ever thought you would live. Often it leaves you feeling alone, sad, and thirsty for just a small portion of the dream you want. However, I know I am not the only one and I have a lot to be thankful for even if I never get just a portion of normalcy.

 Paul, an apostle of Christ, suffered many trials in his life. Yet, he remained faithful to the Lord. Paul found himself leaning more on the Lord through his trials His suffering and heartache motivated him even more. I often find myself much like Paul. The more and more things just fall apart and get hard, the more and more I lean on the Lord to guide me and help me through this life.

Paul maintained his faith while in prison.  During his imprisonment, Paul wrote four letters that survive in our New Testament. They are Ephesians, Philippians, Colossians and Philemon.We are the beneficiaries of Paul’s spiritual wisdom forged in the crucible of personal suffering. These four letters are among the most hopeful and encouraging letters that he wrote. They help us understand how we can find joy in our trials and peace in our suffering.

Paul went through his trials and sufferings to help us! There is always a reason behind your trial and your suffering.  I often think that my life turned out like it did because the Lord knew I had the determination to use my life to help spread His word, His Love, and to help others find the joy and to become content with their life.  Paul learned to be content with his life, and so should we. Paul is a great example from the Bible to learn from.


Paul pleads with the Philippians while in prison: “Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God."
At one of his lowest points in his life, he is writing some of my favorite verses in the Bible. Thank you Paul for suffering you trials in order to help me and others like myself!