Tuesday, March 31, 2015

Jesus

This morning Andrew was babbling and I could not understand him. The only word I could understand was "Jesus". Therefore, I said to him, "Are you talking about Jesus?"
Andrew replies, "Yes, Jesus at church."
Mommy says, "We go to church to learn about Jesus right?"
Andrew says, "Jesus at church."

At this point I thought I would talk to him a little bit about Jesus.

Mommy says, "Andrew where is Jesus at right now?"
Andrew says, "Jesus is at church. He lives there."
Mommy says, "Jesus does not live at church. He lives in heaven. Do you know where Heaven is?"

Andrew looks at me with a confused look. I pointed up to the sky and said, "Heaven is way up there and that is where Jesus lives."
Andrew says, "Jesus lives in Heaven."


This afternoon on our way home from Harsha Andrew randomly says, "Jesus lives in Heaven and it is way up there."


Praying hands

The boys and I pray together at least once if not twice a day. Andrew always participates and Trenton acts as if he is not paying attention to what is going on. Hint the keyword acts!!!!
Yesterday morning we did not have time to pray before we left the house. Therefore we prayed in the van.
I turned around  and faced the boys in the backseat. I put my hands together and said, "Lets do praying hands boys."
I look at Andrew and he does it with a huge grin. I look over at Trenton and I know my mouth hit the floor. I saw this...
I quickly grabbed my phone and got the above picture before he put his hands down. I was so excited!!!! Andrew was excited!!! We were all happy!! This is just another example that he lives in a body that does NOT allow him to do things and does NOT allow him to act like he is paying attention or listening but he is. He is taking everything in around him. I guarantee he knows more than we could ever imagine.


Colossians 3:15
And let the peace of Christ rule in your hearts, to which indeed you were called in one body. And be thankful.

Monday, March 30, 2015

Light It Up Blue

Don't forget to get your blue lights. People around the world are lighting it up blue during the month of April. All you need to do is buy a blue light bulb for your front porch and shine it during the month of April.
Image result for light it up blue

Toilet Training!

Andrew is doing really well in the toilet training. He still will not let me know when he needs to go. I constantly take him to the bathroom every 45 minutes. Almost every time he will go even if it is just a drop or two:)
I try to ask him every 15 minutes if he needs to go. Most of the time, he won't answer me but I at least try to ask him. I always check for dry pants at this time too.
All in all, I am very proud of him! He is doing great!

Sunday, March 29, 2015

Weekend

We had a good weekend! First, the boys had their picture taken with the Easter Bunny!! I was so HAPPY that Trenton cooperated for the picture. I would not have been able to do it if it wasn't for my niece, Grace. She helped me take the boys to the mall while Daddy and Uncle Sol worked hard on our new fence.

 I was so proud of Trenton. It broke my heart taking him into the mall because he was so scared. He fussed the whole time walking into the mall. He fussed and wanted to leave when we were waiting to get our picture with the bunny. He knew exactly what I wanted because he quit fussing and stood there for the picture. After the picture was taken he started fussing again and froze. He was scared and didn't want to move. He started crying. It is just devastating to see him so scared in unfamiliar places. I can't imagine being him. I held back but almost cried happy tears because he stood there for the picture but at the same time I wanted to cry heartbroken tears for him.

All in all, the picture turned out great! It is our first picture of the boys with the Easter Bunny. Trenton never would do it before this year!
Later in the day, we colored Easter eggs with Grace.


Today after a fabulous morning at church, we went outside for just a short amount of time. The boys loved their new swing set! Thank you to their Dad for putting it together.











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Friday, March 27, 2015

One of those days....

Today was one of those days where if I could have ran away, I would have. I would have ran away from the pain and heartache.
Today was one of those days that if I had magical powers, I would have freed Trenton of his autism and make his life so much easier.
Today was one of those days that I fought back tears all day. My heart was shattered from the hell that Trenton went through this morning. My eyes were in pain from watching him suffer.My body was broken and nothing could mend it back together.

Something has been bothering Trenton off and on lately. In fact, he has had random moments like this for the past two weeks. (see previous post on pedaling.) Trenton is in a very "clear" stage at the moment. His sensory needs are lower at the present time, therefore it clears his mind up a little. Basically, he is more aware of things right now. Unfortunately, he is smart enough to know that he can't do some things and it upsets him.

First, Trenton was extremely difficult to get dressed this morning. He does not like changing clothes lately. However, the hard part is that he does not like to change his diaper. When I start to put a new diaper on him he hits at me and says, "no". This morning he walked around our house naked for one hour until I finally was able to put a diaper and clothes on him. The first 25 minutes he simply walked around the house naked, hitting at me every time I tried to put a diaper on him. After 25 minutes, he starts crying his big, crocodile tears. He had a huge frown on his face and he cried profusely. After a few minutes of that, he went into a meltdown on top of the stairs. Sometimes I think he realizes that he still has to be dressed and is not potty trained.

Honestly, I don't even know what to type on this blog post. Nothing I type can put into words how I felt watching my naked son with autism cry profusely while trying to say something. He was trying to communicate something to me. He knew exactly what he wanted but just could not communicate it to me. His frustrations grew stronger. His cries grew louder. My anxiety went sky rocket high. I was  from 7:02 AM to 7:58 AM trying to manage naked Trenton while Andrew was on my hip pretending to cry because Trenton was and wanting my undivided attention. Needless to say, I was broken mentally and physically from the start of our day, just like Trenton was.

I went on about my day and made the best of it with Andrew. However, my heart was with Trenton all day. Watching him battle his battles everyday motivates me more and more to be his best advocate. After all, as bad as I know I hurt, he hurts worse.

In the end, Trenton showed me tonight that we were going to be alright. He showed me love! He knows I am always there each step of the way with him. Tonight, God granted me the blessing of having Trenton curl up on me to go to sleep. I have posted the picture below. I know I look like one ugly, pale, tired Mom in this picture. I am! I think I need to post this picture outside and it would scare away any type of critter that would even think of sneaking into my house. The point is....I really don't care what I look like. The picture means the world to me because moments like this is so few and far between.
When Andrew sees this picture, I gaurantee he says, "I don't like this Mommy."
That is what he says when he sees me without makeup.

Thursday, March 26, 2015

Pedaling

I am so proud of Andrew. He does an outstanding job pedaling these days. He has worked so hard to achieve this big accomplishment. He is very proud of himself too! On the other hand, my heart breaks for Trenton who knows that he can't pedal. It hurt the other day to watch Trenton while he watched Andrew pedal. Trenton's eyes were so sad.  After a few minutes of watching Andrew, Trenton started fussing and had a tantrum.
Trenton realizes on some days what he can and can't do....



These pictures were from a week ago. I realized I never posted them. They are too cute to not post...
The boys couldn't watch Pops work by himself, they wanted to help.

Happy Tears Video!

Another video that brought tears to my eyes!

Here is a link to the video

https://www.youtube.com/watch?v=2cRjX1lEF8A&feature=youtu.be



Precious Video

Here is a phenomenal video of Trenton at Harsha yesterday! Trenton had an amazingly "clear" day yesterday. Words were coming out of his mouth. He was looking at his coaches and his family at home. He seemed more aware of his surroundings. He use to have days like this before but he has not in a long time. Autism is so strange how one can have days or weeks like this and then it disappears.

I have followed Carly Fleischmann's story since I read her fathers book, Carly's Voice. Carly's autism is similar to Trenton's autism. Carly would be able to type to her family and communicate on some days and then she would go through a long period where she couldn't. As of right now, Carly is a grown woman and is unable to communicate at this present time. At the time her father wrote his book, she was doing good and communicating through typing. Now she can't type. Autism is very difficult to understand. The hardest thing for me to come to grips is the individuals like Trenton who live with that brain and who are trapped in that body. 
I treasure the good days more than anyone could imagine!

 Below is a link to the video!

video

Wednesday, March 25, 2015

Family

We had a really good day!
First, Andrew and Mommy went to the library. After story time today the teacher had the students paint. Andrew loved it!



All afternoon we had fun with our family from the St. Louis area and Florida!

 Andrew had an awesome time playing with his cousins!



 When Trenton got home from Harsha, he joined in on the action.
 Daddy with his siblings.

I can't wait to tell you about Trenton's day in the next post! He had a fantastic day at Harsha!!!!!!!!!!!!!

One Sentence

It only takes one sentence to make EVERYTHING all better. Only one sentence to make the daily battles we face all worth it. Only one!
Yesterday, while at Harsha, Andrew said one sentence to his coach that made my eyes fill up with instant tears. Andrew crawled up on his coaches lap, looked her in the eye with a serious face and said, "My Mommy takes care of me."
When his coach told me that, it was instant happy tears! It is all I needed to hear to remind me that all of those sleepless nights are more than worth it...all those battles with insurance companies...all those stares.....all those judgements....IT IS ALL WORTH IT!

Monday, March 23, 2015

Bubbles-Swing-Shaving Cream

Trenton loves bubbles! I love to see how happy he gets when we get the bubbles out at home!



Trenton still loves to swing. Swinging is a must for his sensory needs. Of course, Andrew always wants in the same swing that Trenton is in. Trenton was excellent to let him swing with him the other night.

We have been playing in shaving cream around our house lately. This is another cheap sensory activity that I can do with them. Playing with shaving cream allows them to develop their sensory skills while making them more comfortable with different textures.


The boys loved it when  I wrote the alphabet in it!

Toilet Training Update!

Toilet training is very frustrating!! It is hard enough for neurotypical kids so you can only imagine how hard it is with autism. All I can say is that I believe we will be many days doing the potty training schedule.As of right now, I am doing a pant check every 15 minutes. We go to the bathroom every 30 minutes. Andrew makes a sticker chart when he has dry pants at his checks! He gets nice small chocalate treat if he potty's in the toilet.
 Andrew's behavior problems have got in the way at times. The smallest things will distract him and a few times this past weekend he screamed in the bathroom and refused to get on toilet. However, we did have a lot of successful trips! He peed on the potty a lot. On several occasions he really tried to go but he just couldn't. He even looked at me with sad eyes and said, "Mommy help me." when I was making him sit on the toilet.
All in all, we have a long way to go. Andrew and I will be seeing lots of the bathroom for many, many days ahead.
He had a very successful day at Harsha with potty training today! He had no accidents!! We had no accidents at home today as well!!! Day 3 was a success! I was excited about today. He loves and adores his coaches and I just knew he would be successful there!
 I am so happy that he did not have any accidents today. I do believe it will a while before he is at the point of telling us when he needs to potty on his own which is why I am doing a pant check every 15 minutes and bathroom every 30 minutes right now.


Friday, March 20, 2015

Toilet Training

We have a huge weekend ahead of us. This little man starts toileting training on Saturday. I am excited and nervous!
I will be following the same protocol that Harsha will follow on his days there. It will not be an easy task but like always, I am up for the challenge. Starting tomorrow, we will live in the bathroom for a few days:)

Special, Extended Family


A Very Special, Extended Family
Since my oldest son’s diagnosis of severe autism, I have quickly realized that I became a part of a very special extended family. There are some people who end up meaning the world to you and your family. You will find yourself wondering what you would do without them. I learned after my oldest son’s diagnosis that there are a few people that soon become your adopted family once you are a part of the autism world.

In most cases, the people who understand and care the most are the ones who live it too.  After all, they, too, are up all night battling sensory problems with their child. They are the ones who can’t take their child out in public. They are the ones who know what it feels like to have a child who can’t speak or communicate. They know all too well what it is like to manage meltdowns. They know the pain that you know. They know what it feels like to have a child that is different.

After each and every long, sleepless night that I endure with having two boys on the spectrum with sleep problems; I longed to see and speak to someone who is living like my family. Each and every morning I would be about to break from the lack of sleep. After all, what I witnessed and battled all night long would make most people run away and not look back.  On most mornings my body and mind is craving to see and speak to someone who cares and is understanding.

Therefore, these families become a part of your very special, extended family. It doesn’t matter if you are friends with them or if you simply see a family like yours in a store, you share a special bond. I know I can spot a family like mine when I see them and I always make sure I flash a smile or give them a nod letting them know that I understand.


My boys have had some of the most amazing therapists and coaches since our journey. My family moved from Illinois to Indiana in order for my boys to have the best therapy to meet their needs.  Harsha Cognitive Center, where my boys receive their therapy, is the ying to our yang! I know on most days I am about to break mentally. I am a sleep deprived, autism mom who is doing my best to assure that my boys have the best outcome in life. Therefore, finding my boys the best therapists and coaches is one of the most crucial decisions I can make. I can’t be more satisfied with the ones that I have chosen to have a significant impact on my boys.

On several occasions I would be about to collapse each morning. I would need sleep and a break from autism, even if it was just for a few hours. With that said, knowing that I was leaving my boys with people who care and who want to help them succeed in life means more than words can express. I will never be able to express enough how much Harsha Cognitive Center means to us.

The autism world is made up of families, therapists, and coaches.  We become a part of a special family. No one has more of an impact on their child besides the parents than their coaches and therapists.  The special bond that my boys have with their coaches and therapists is beautiful! We love each and every one of our special, extended family members and we always will! I will always be forever grateful to them for their hard work and dedication that they have to my boys. We were so blessed to welcome our therapist and coaches into our family.
Harsha always gets great pictures of Trenton.



Thursday, March 19, 2015

Beautiful!

I love to take his picture when he is sleeping. He is free of his trials and so beautiful!

Wednesday, March 18, 2015

Library

Andrew wanted to take a selfie at the library today. He thought it was so much fun that we were playing a game together with headphones on.

I absolutely love our Story Time at the library on Wednesdays.
Today Andrew told two kids that he didn't like them for no reason. The kids weren't bothering him. He simply pointed at them and said, " I don't like this boy"

During the free play time at the end, Andrew made sure I was right there by him. I tried to encourage him to play with the other children but Mommy had to be right by his side.

Outside

We went outside to play the other day. The boys love being outside!


Trenton wants to be able to pedal. It breaks my heart to see him try. I hope one day we will jump with joy watching him pedal across the yard.

Tuesday, March 17, 2015

Tucking in his Sesame Street friends!

Andrew tucked in his Sesame Street friends the other night and gave them kisses! It was so cute:)


Monday, March 16, 2015

Why I sleep in Trenton's room


Almost every night I climb into bed with Trenton. I rarely sleep in the normal position in bed because by the time I crawl in bed he is taking up the entire bed. With that said, I most likely crawl up at the foot of the bed and sleep in an awkward position. Sometimes I wake up to my legs cramping because I have no room so I will move to the floor or to the couch.

I am sure you are asking yourself, "Why does she do that?"It is hard for people to understand why I sleep in Trenton's room every night. If just reading my blog from time to time can't explain enough for you then let me tell you what happened last night.

I didn't get much sleep last week. I had four of the roughest nights in a row. My total amount of sleep last week equals what an average person should get in one night. It is truly amazing what I can do on two hours of sleep daily. With that said, sleep deprivation is taking over again. I am very thankful that Trenton slept for some consecutive hours last night! However, I was up with Andrew a lot last night. What happened last night will haunt me forever because it could have been a very bad situation.......
I remember looking at my phone and the time was 4 AM when I was crawling back in bed with Trenton after getting Andrew back to sleep. The next thing I know I hear crying but I am in Andrew's room. My knees were on the floor because I was kneeling over Andrew's bed....my hand was on Andrew's back....my face was nose first in Andrew's bed. I obviously heard Andrew crying and went to his room to soothe him back to sleep. I went back  in Trenton's room because I thought that was where he was crying and he was not there. I immediately went downstairs to find Trenton standing in the house fussing, crying, and in a state of panic.

It was all I could do to not vomit. I was sick to my stomach. I was so sleep deprived that I accidentally fell asleep while soothing Andrew back to sleep. When I go to take care of Andrew in the night I always leave his door wide open just in case Trenton wakes up so I can see and hear him. Sometimes Trenton wakes up and is very noisy but sometimes he wakes up and is as quiet as a mouse.

Trenton could have been walking around the house and crying for one hour. I have no idea how long. I'm guessing he wasn't crying long since I heard him and woke up. We are just lucky that he wasn't in a destructive mood.  He could have hurt himself...he could have escaped from the house ....its scary to think what could have happened. I think what disturbs me the most is the fact that he didn't know to go upstairs and see if I was in Andrew's room. He didn't know to go upstairs and open the door to where Daddy was sleeping. He can't yell, "Mom where are you?" He can't say, "I am awake for the day mom." He can't spontaneous talk and protect himself!!!!!!!!!! All he knew to do was cry like a tiny baby. On some nights Trenton would not have cared and he would have went wild destroying the house and hurting himself. We were just lucky that Trenton was in a calm mood and crying. Thank goodness I have good ears and heard him crying all the way upstairs from downstairs.

This is why I sleep in Trenton's room or on the couch. Trenton always wakes up and heads downstairs when he is ready to leave his room. If I am asleep on the couch I hear him. To parent a child like Trenton there can absolutely be no letting your guard down. I can't go to bed like I used to. I have to prepare and be on guard in my sleep to prevent a tragedy from happening to him. Sadly, it's almost weekly that a child with autism escapes from their parent's house. Too often than not, they are found dead.  I refuse to let that happen to my children which is why I take every precautionary measure that I can humanly do even if it means that I never sleep the right way in bed or sleep half my time on the couch or the floor.

Sunday, March 15, 2015

Music Makers

Friday morning I took Andrew to his class at the library. The class is called, Music Makers. After story time the kids get to sing and make music. Right before it was time to leave, the teacher got a parachute out. The kids loved it!
(I was happy on Friday morning because it was the first time he has let me put that shirt on him since he saw his cousin wear one just like it.)

Burger King

Nana and I took the boys to Burger King after church today. Andrew was excited! Andrew loves Burger King. It was the perfect place to take Trenton and see how he would do since he is unable to handle restaurants because very few people were in there today. Trenton  had a great time playing in the kid area. Andrew never went down the slide, even with Trenton there. Andrew was more concerned making sure this particular gentleman knew his name. Andrew kept looking at him saying, "My name is Andrew." It would not surprise me if Andrew told him that ten times.




 Trenton did great at church! I was very proud of him. I was nervous to say the least since he had been up since 2 AM but he did fantastic today!


After Burger King we thought we would be brave and try a small store. It didn't go so well. Trenton went wild and started taking things off the wall and trying to open items up. He was getting irate when I wouldn't let him destroy everything. After four minutes I was trying to take him back out to my van. Trenton was going into a meltdown throwing himself on the floor, crying and screaming. Almost everyone's eyes were on us and that is no joke. I couldn't control Trenton. Sadly, I received the rudest look that I have ever received today. Trust me, I have received some awful looks from people when I have had Trenton in the public before but nothing like today. Honestly, I thought the lady was going to break her neck from the awkward position she was getting herself into to make sure I knew she was looking at me.
I know the pain of what it feels like to have your whole life judged. Hence that is one reason I blog. If my life can help educate just one person and save just one person from the evil stares that autism moms receive, then its well worth it!

Joshua 1:9 Have I not commanded you? Be strong and courageous. Do not be frightened, and do not be dismayed, for the Lord your God is with you wherever you go.

2 Corinthians 12:9 And he said unto me, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me.