Tuesday, October 31, 2017

Some Days Are Harder Than Others

It's Every Single Day.

The battles are every single day but some days they are much harder to get through. It's always the days that most people enjoy the most.

It's thrown in our faces daily. I can't do anything without seeing people with such "easy" lives. My children can't go anywhere without seeing it as well. They may have autism but they are smart. They know they are different. They want to fit in but CAN'T.

It's Halloween. The time of the year that deep down I love but despise so much at the same time. For once I want to be able to do the Trunk or Treats or Trick or Treat nights without all the chaos, battles, and fights that come along with autism. Just for one time I want to be that parent that gets to walk the neighborhoods and relax while your child does exactly what they are suppose to do. Just for one minute I want to feel what that is like.

Instead,  I go through a two week prepping period where I get my boys ready for what we will do. Instead, we go to only three houses, if that, as a family before Trenton is pulling on me and making his noises to go home. Instead, I walk up to the house holding onto my child for dear life because he bolts faster than lightening coming from the sky. He pulls and tugs and I pull and tug back.
Instead of the smiles from some people I get the "what is wrong with him" look. Before I know it, we are back home watching Halloween happen from inside our homes.

Instead of enjoying it, it was just another battle of the autism wars. Instead of having a child come home and dumping his candy in the middle of the living room floor like I did as a kid, I have a kid that wants nothing but to take his costume off and try to release his anxiety and stress from the experience.
My other son loves the experience but it can't be done without a hundred questions and explanations.

What I feared the most happened!  Trying to trick or treat  in our neighborhood was just  enough damage to make him not sleep. He had just enough stimulation and "hiccups" to his routine that he didn't sleep.

So I ask myself, "Why did I even try?"

The pain is so real. It is with everything we do and can't do. It's a constant reminder that our life is not like our neighbors, family, and friends. Yes, I accept it but it doesn't mean that it doesn't hurt daily.

Deep down I am just a normal mom who wants what any mom wants. I accept my child doesn't like the normal traditions in this world but it hurts. I dreamed of these things while being pregnant and no matter how much  I accept my children for who they are, there is a part of me that is always in constant pain and grief. It's real. It's normal for families like ours. I grieve because I know deep down he wants to do it but can't.

So, instead we continue to try to fit in a world where we feel so left out of. We continue to be defeated each year with Halloween. I grieve and hold back the disappointment and smile behind my pain. What else can you do?
It's a real experience for us daily and for many other autism families.





Sunday, October 29, 2017

Thursday, October 26, 2017

Rocking

This little guy has been wanting me to rock him to sleep lately!!!💙💙💙💙

Wednesday, October 18, 2017

I Don't Know



I don't know!

I don't know what it is like anymore!

What are you talking about?..... you might ask...let me tell you!

I don't know what it is like to live a day without chronic stress.
I don't know what it is like to go to bed and sleep all night.
I don't know what it is like to have a day without ST,OT, ABA, and an IEP. Oh you don't know what those mean? Well, welcome to the world of special needs!
I don't know what it is like to smile without pain and grief.
I don't know what it is like to do anything for myself.
I don't know what it is like to put on a cute outfit and look good and feel good!
I don't know what it is like to enjoy a day, relaxing!
I don't know what it is like to laugh like I used too.
I don't know what it is like to cook a meal and have my family sit down at the table and eat...AT THE SAME TIME!
I don't know what it is like to be well rested and not sleep deprived.
I don't know what it is like to not feel isolated in this world.
I don't know what it is like to celebrate the holidays.
I don't know what it feels like to fit in with my friends.

I don't know what it is like to have my son tell me his wants and needs.
I don't know what it is like to let my guard down.
I don't know what it is like to have a Saturday fun day with my kids.
I don't know what it is like to make plans that are not revolved around classic autism.
I don't know what it is like to put my kids on a school bus and NOT WORRY. I am talking about TRUE WORRY! Not the ,"hope my kids have a good day"  kind of worry. I am talking about the, "hope they figure out what he wants today by that noise" kind of worry.
I don't know what it is like to eat at a restaurant without being ready and prepared for WWIII.
I don't know what it is like to not have a child pacing, running, pushing me, running into walls, making noises, or going into a complete meltdown.
I don't know what it is like to not fix my child the same meal for breakfast, lunch, and dinner.
I don't know what it is like to NOT walk on eggshells around my child.
I don't know what it is like to not have the fear of my own death cross my mind daily.
I don' know what it is like to have my child look me in the eye and speak to me.
I don't know what it is like to have my child being able to participate in the normal children activities.
I don't know what it is like to have my child invited to a birthday party or to the kids house down the street.
I don't know what it is like to buckle my child in his car seat and not worry about something being thrown at me or when the next sharp scream is going to come.
I don't know what it is like to NOT EXPLAIN MY CHILD TO THE WORLD!
I don't know what it is like to have my child with me and to NOT have people stare at us.
I don't know what it is like to NOT fight for him daily!

The " I don't knows"...they are never ending!






Tuesday, October 17, 2017

Aggressive Behavior

Autism has many characteristics. It goes way beyond the three basic traits that most people think of such as  communication, socialization, and behavior. I hope to do a post and outline of all the traits of autism. However, in this particular post, I want to focus on aggressive behavior.
Behavior is a form of communication.  All behavior is communicating. Individuals with classic autism can have aggressive behavior? But, what exactly causes the behavior?

Sometimes behavioral responses are simply a reflex. Sometimes it is likely from a underlying biological process that results in behaviors that are out of the persons control.

Many behaviors are a response to a previous experience. They remember how they felt in a certain situation, therefore, they continue in that behavior. For example, if they were in a situation that left them with high anxiety, something that is not "normal" to their routine, they develop anxiety and maladaptive behaviors. The behavior is a result of their inner anxiety. Once that has taken over the individual with autism, it is hard to revert back to how there were without that anxiety and behavior. The individual learns to walk on eggshells and they are a bomb waiting to explode because they remember all too well the disruption in their routine or that situation that makes them feel that way so they live their life on edge, resulting in maladaptive behavior that is beyond their control.

If the individual is unable to communicate, it makes the possibility of the behavior being aggressive a likely possibility.

Research proves that an individual with autism shows aggressive behavior to their caregiver twenty percent more than to individuals they are not as comfortable with. Research also proves that if the child displayed aggressive behavior at a young age, it is likely to come back as the individual gets older.

This picture is from 2.5 years ago during one of Trenton's aggressive behavior moments. He intentionally ran through glass. I took a picture after the episode was over of the huge glass pieces.  He has done this three times. I have no doubt that he was not in control of his body and this was done out of his control. Trenton has lots of moments of aggressive behavior from his past which makes sense that he is regressing back to aggressive behavior.




Individuals with autism are 40 percent more likely to die from injury than a neurotypical person. I believe this to be true! I have to be on guard with him 24/7.
Trenton acts fine one second and the next second when you least expect it, he is engaging in aggressive, dangerous behavior. He can't be trusted.  Sadly, for the past two years I was able to  get to where I could trust him in a few situations. However, he has regressed and I can't now.

In a study of 1584 child with autism ages 2 to 17, shows some interesting information in this area.
This particular study shows that children who have had sleep challenges and severe sensory issues are much more likely to display aggressive behavior than children with autism without those challenges.
All of those studies makes perfect sense when it comes to Trenton.

So what is a parent to do?
Do the best you can to keep life strict and to a routine!!
Do your best to prevent over stimulation and anxiety.

People with autism often report that they find the world confusing and anxiety producing. Many of the successful supports for increasing appropriate behavior involve creating more predictability and safety.

From all the information I have read, studied, and the numerous parents I have spoke to, a lot of this information makes perfect sense.
There are key ages in an individual with autism where their bodies and brain waves are changing. Most of the time, it causes regression and aggressive behavior. Of course, puberty age is a huge one. However, another age where a lot of things happen in the autistic person body is around the age of  8-9. I often wonder if Trenton isn't starting his period early......



Wednesday, October 11, 2017

He Slept!

After that terrible day with uncontrollable behavior....he slept all night long!!!


Behavior

Incase you missed this post on Facebook.....

I walked in my house and sat down on my couch at 1:30 PM this afternoon holding back tears. I was so emotionally and mentally drained from what I had just went through at ST & OT with Trenton that I simply felt nothing! My body was numb to everything. The stress of this life had took over and left me numb!
Trenton's behavior has declined the past month and a half and seems to be getting worse. He got fixated on an object during ST this morning and was not able to move past it... which led to very aggressive, dangerous behavior. I won't go into detail but it was very severe aggressive, dangerous behavior to the point that he put others around him in danger. He put himself in danger. I was afraid to walk out of the building to our van afterwards because it is on a busy street and he was so aggressive if he got away from me, he would of ran right into the busy street. He does not know danger. (He keeps getting bigger and stronger. What am I going to do when he becomes a teenager????)
After ST & OT, I had to walk him into Harsha Autism Center without a shirt on because he ripped it off of himself in the van. (I found out today that it is time to get "autism proof" seatbelts and all the good stuff to make driving with him safe)
Needless to say when I got home at 1:30 and finally had one hour to myself before Andrew got home, I just sat on the couch, replaying the entire morning....drained! Then I got a call from Harsha Autism Center informing me that they had to do three physical restraint holds on Trenton so far today because his behavior was dangerous, aggressive, and put others around him in danger. UGH!!!! Life with classic autism is so hard!!!
I had some people tell me right after Trenton was diagnosed that it gets better....well...it doesn't actually get better for some people. To some families it does! To some, it doesn't! Some areas gets better and then regression comes in one area but it makes everything else impossible.
To those who understand the aggressive behavior side of autism...it is a huge stress and worry. I know you understand what I am talking about.
I was just thinking last night about what his life is going to be like if he keeps on regressing like this.....of course that led to "what will happen to him when I die."....that led to another thought......UGH! It NEVER gets easier!
If you are having a day......a month...two months like we are.....you are not alone! I am living like this and we know many other families are too! So, hang in there! I will keep you in my prayers!

Sunday, October 8, 2017

Family

We had some visitors on Saturday!! Andrew was beyond excited to play with Lincoln for the day.
We played around the house and ventured out to a few places. Trenton as always was included but was not able to handle it. Therefore, like every family outing is, Trenton spent some time in the van while everyone else enjoyed the event. Family outings and life in general will never be normal. However, we adjust and thanks to my family, we are able to do some things.


I don't get to see this little guy enough. (my nephew)
 I told boys to give a thumbs up or a thumbs down to the Cubs. LOL! Andrew made sure he gave them a thumbs down:)
 Love my family! Uncle Brent from STL made the trip over for the day!

 Trenton in the van.....it seems to be the normal lately. I pray and hope he gets back to where he was at places in public.
Ephesians 5:20 - Giving thanks always for all things unto God and the Father in the name of our Lord Jesus Christ.

Like I mentioned earlier, we will never be the typical, normal family and we will never do things like most families do. Yes, it hurts and gets me sad when Trenton can't do things. But, we are beyond blessed! God has been very good to us. We are so thankful for what we have!!


All the boys were all about Uncle Brent!


Friday, October 6, 2017

Mommy Miss You

If you follow and have seen all of my post, you know Trenton has been struggling in many areas lately. When he is in a hard phase, I struggle with the emotions of autism more than usual. However, T-man really does show me daily that he loves me and appreciates me! You can read my post below to see how ...he shows me this:)
What he did yesterday is not in my previous post because I wrote it yesterday. But, it is the icing on the cake to the attached post!
He did his normal phone call to me when he was upset at Harsha Autism Center. (I explained this process in my attachment.) He calmed down after hearing my voice like he usually does. However, what made it even more special today at pick up time was not just his smile that lit up the room when he saw me but it is what he said!!!! Yes....it's what he said! In the middle of all of his happy noises when he ran up to me he said, "Mommy miss you." I AM NOT KIDDING!!!!!! I know it is exactly what he said!!!! In fact, he clapped his hands all the way home and said it a handful of other times, too!
Trenton really does feel secure with me. I am the one that knows exactly what he wants all the time. I know what his noises mean. I know what his sounds mean. I know him way better than anyone else. I can't imagine being him and not able to communicate and express things in this world. Therefore, I can't imagine his anxiety that he has when his security, which is me, is not around.
When I was walking him from the building to our van, he looked at me and said, "Mommy, Trenton, Andrew." Andrew was in the van waiting on us and when I told him Trenton said his name, he was the happiest little boy ever!!!!! Andrew loves his brother so much!!!
I never would have dreamed a year ago that Trenton's body would let him have such a clear moment to express this! It may never happen again. However, I will always cherish that moment, forever!

Wednesday, October 4, 2017

How They Show Me Love

Actions speak louder than words. I have always said this and it speaks volumes to me now, especially with having a child who is able to communicate very little.

Trenton often request for me throughout his day. Almost every day I hear from either his teacher or therapist that Trenton was saying my name verbally and on his AAC device. I can't tell you how much this means to me. I used to pray and beg God to hear his voice and to hear my name roll off his tongue. Now I do daily and it is simply the best feeling ever!!

It is not uncommon, especially for the past 5 weeks, for Trenton to get upset and cry during his day. He sometimes request, while at therapy, to call me or his therapist ask him if he wants to call me. Therefore, Trenton with the help of his therapist, calls me. It makes my day to hear his sweet noises on the other end. It hurts to hear his cries and to hear him crying and saying my name. However, he normally calms down after he calls me!! To have a child whom you can't have a conversation with.....and who can't express or show love..... to experience something as little as him calling me with his therapist so he can hear my voice to calm down....wow! I can't even describe how it makes me feel! It definitely is a reminder that I am his person and he REALLY does LOVE ME! I am so proud of him that on some days he has the ability to calm his emotions after hearing my voice on the phone. It is just simply ONE of the best feelings in the world to me! It is one of those things that some parents take for granted but parents, like me, know how special and big this really is!

Another amazing reminder that he loves me is every time I pick him up, I get the most amazing smile from him. He doesn't show emotion most of the time which is common with severe autism. Sure, I know when he is happy and when he is upset from his noises and actions but he doesn't just come up to me and hug me or kiss me. But, he NEVER fails to greet me with the most amazing smile! It is the highlight of my day! Every. Single. Time!

Trenton is only away from me three different times. Those times are a few hours on Monday-Friday when he is at school, a few hours Monday-Friday when he is at Harsha Autism Center, and Sunday afternoon when he is at his dad's house. Every time I pick him up at all three places he couldn't smile bigger and is ready to come home to me. Honestly, I am not sure what is better....hearing my name daily, crying for me and me being able to comfort him, or that big beautiful smile?!?!?! It's all pretty amazing!! The words and actions of a child with classic autism is all simply amazing! AMAZING! This is the times that help me get through all the rough times we go through!

And...by the way....two nights ago I said to Trenton, "Oh Trenton. I love you so much. I sure hope you know what love means. Do you love Mommy?"
He shouted, "YES!"

Oh yeah....God is good!!! We have had a lot of rough times the past month but I still see my blessings in those rough times!


Here is a picture of Trenton on the phone with me!!

Andrew, on the other hand, is all about telling me how much he loves me all the time.

"Moochies, you are the best." "Moochies you take such good care of me." are some of the examples I hear from him.

He says many other things daily. The way he expresses his love is in a totally different way. Andrew hugs. Andrew kisses me. He does it spontaneously and when I ask him. His emotions are like a typical person. Andrew draws me pictures and tells me he did it cause he loves me. Andrew thanks me for things.
In many ways, I do get the best of both worlds. I experience normalcy with Andrew and I get the special, unique ways with T-man!



Monday, October 2, 2017

Every Day-Not Just Today

James 1:2-3King James Version (KJV)
 My brethren, count it all joy when ye fall into divers temptations;
 Knowing this, that the trying of your faith worketh patience.

As the nation comes together to pray for the Las Vegas victims and their families, I can't help but ask myself how many people may say a prayer today and then wake up tomorrow and not pray again until the next hard time in life?

How many people may turn to God today and by next week they are back to their life and they don't think they need God?

We all need to remember that God is the creator of this world! Our life is not our life! It is God's life. God picked you for the role that you live. He gave you a Bible to know what to do. Then, he gives you free will.

God tells us many things in the Bible and sadly, many people don't do them. Look at how many people do not follow God's word. It is all around us! God wants LOVE! God wants people to think of  others before themselves. We all know how selfish the world is....do you really think God is happy with the world he created? 

Do you think a coach is happy with his players if the coach provides them all the details on how to run the play and then they don't do it right?
Do you think a movie director is happy with his actors after he gives them the script on what to do and then come show time, they don't do it?

No, not at all!

Do you think God is happy with the world he created?

No, not at all!

This is why we are told in Bible to be grateful of hard times. But why you might ask?

In difficult times, you see people coming together. You see "The Good Samaritans" coming out. You see people turning to Him. You see people taking care of the weak, the hurt, the injured, etc. You see people living like God has instructed us to live. So....sadly.....God allows things to happen to wake up the world! People need a test from time to time. Many people are handed test every day but they refuse. Sometimes real big bad things have to happen for God to test people even more.

Until everyone starts living like God designed, we will always see unfortunate events like Las Vegas, all the terrorist attacks, church shootings, etc.

As I have said before, Trenton was one of my test. Divorce was one of my test. 
I believe I have responded how God wanted me to. Before autism, I didn't pray like I do now. I have a much deeper appreciation of a healthy body. I have a deeper appreciation how life can change before you know it. I have a deeper appreciation of needing my amazing God. I have a deeper appreciation of what it means to put others first....etc....etc....etc.

God wants us to all have that deep understanding. He wants everyone to do what he says.

Romans 8: 28
And we know that all things work together for good to them that love God, to them who are the called according to his purpose.

God says that ALL things work together for those that love him. If you are under a tragic event.....if you just got life changing information.....if you are taking care of a forever baby for the rest of your life....battling cancer.....sudden loss of a loved one.....it will be ok. God works for us as long as we are working for him. So take that "test" and do good! 
Yes you will always be affected and may never be the same again....but you are being tested by God.....you need that test!

Romans 8:18
For I reckon that the sufferings of this present time are not worthy to be compared with the glory which shall be revealed in us.

This world isn't ours! We live the role that God gave us, remember? So lie your role...accept your trials....read your Bible....follow God's word....and focus on the life that really matters, our eternal life.

Let's not need God just during your hard time....NEED GOD EVERY DAY LIKE HE SAYS!

Sunday, October 1, 2017

Picture

Trenton kept putting his arm around me Saturday afternoon and he would say, "picture."

Seven

Seven.

Seven days a week, I am with my son. (Minus the few hours at therapy and the few hours he is with his dad on Sunday afternoon.)
Seven nights a week I fight the battle of sleep and autism. I fight it alone with Trenton. No one to help.
Seven days a week, I lay my head down on my pillow at night fearing what the night might bring.
Seven days a week, I sleep with my son in the same bed due to his disability.
Seven days a week we are locked in our house all day.
Seven days a week we battle sensory challenges and follow a sensory diet.
Seven days a week, I clean up urine and feces.
Seven days a week, I fix him the same food for breakfast, lunch, and dinner.
Seven days a week, I have to drive thru McDonalds.
Seven days a week, my guard is always up.
Seven days a week, I am with my son.
Seven days a week, I make every decision on what is best for my disabled son.
Seven days a week, I fear my death and what will happen to him.
Seven days a week, I battle all the battles of autism. I'm fighting for my son in school, therapy, insurance, waivers, and the state paperwork.

Seven days a week, I am taking care of a forever baby.
Seven days a week, my son depends on me. I am his person. I am his security. I am the one person he trust.
Seven days a week I have question after question that floats around in my head.
Seven days a week, I have chronic stress.
Seven days a week, I have extreme exhaustion that comes with parenting a special needs child.
Seven days a week, I am reviewing ST,OT, ABA, and school notes.
Seven days a week, I am documenting notes on his ABC chart.
Seven days a week, I am protecting my child who does not know danger.

BUT

Seven days a week, I see the face of an angel.
Seven days a week, I get to smile from my sons.
Seven days a week, I see beauty and innocence.
Seven days a week, I am very blessed.
Seven days a week, I see hope.
Seven days a week, I see joy.
Seven days a week, he makes me laugh.
Seven days a week, I realize how much better he makes me.
Seven days a week, I see love and show love to my boys.
Seven days a week, I walk a hard battle but an amazing battle
Seven days a week, I see strength I never knew I had.
Seven days a week, I witness a fighter in my own son.
Seven days a week, I live in the most special, amazing bond that can not be described to anyone. A bond only a mother and a non-verbal child can experience.
Seven days a week, I am part of an amazing group of "Autism Parents"
Seven days a week, I get joy from helping my child with severe autism and high functioning autism.
Seven days a week, I am given a task and I accept it.
Seven days a week, we celebrate a tiny success.
Seven days a week, I am loved more than anyone can imagine!
Seven days a week, I am reminded how blessed I really am.

I wouldn't have it any other way!