Monday, August 31, 2015

Spiderman

Spiderman visited Harsha today! Andrew loved it! I heard all about it this evening at home. Then after Andrew was done telling me about it, he said, "Mommy, Spiderman was Terris. It wasn't the real Spiderman."



I know you are in there Trenton!

I picked Trenton up this morning from Harsha because he had diarrhea. I am not sure why he had diarrhea. He used to have it every day which can be fairly common with kids with autism. It is called "the leaky gut." So did he have it because he was feeling a little under the weather? I don't know. Did he have it due to an increase in his medicine? Again, I don't know. Was it something he ate or drank? Don't know! I don't know because Trenton can't tell me.

When Trenton and Andrew were babies, I hated the fact when they were sick because they couldn't tell me. Babies can't speak! I have heard many mothers say the same thing, " It's terrible when they are sick as babies because they can't tell me." I have heard that so many times. I agree! But what is worse is when your child is 5 years old and still can't tell you. A five year old is more aware than a baby and gets frustrated. What will be worse is when he is a teenager and a grown man and still can't tell me.

My mom and I read lots of books on autism. It better educates myself and prepares for what lies ahead. I just happen to be talking to my mom today and she was telling me about the book she is reading now. The book is about a non-verbal girl with autism. She was able to relay to her parents, much like Carly F. in Carly's Voice, about how difficult it was not being able to speak. This young woman spoke of how it was torture to hear everyone speaking around her and not being able to speak or express her thoughts. When my mom was telling me about this I had to work hard to not vomit. Not because I was sick but because how saddening it is to me how individuals with moderate to severe autism suffer and one of those is my own son. Then it further upsets me that there are so many people who are blessed beyond belief but have probably never thanked God for their blessings.

Trenton's doctor doubled his medication and we started that over the weekend. Trenton's body got use to the dose that he was on and it was not helping him anymore. Therefore, the new dosage seems to be helping so far. Trenton seems to be a lot calmer and more mellowed out. When Trenton has days where he seems to be more mellowed out, I can tell that he is more aware of his surroundings and seems to show more emotion

I was admiring Trenton for a few minutes tonight while he was watching one of his Baby Einstein dvds. I was thinking about how amazing he is and how I wish his life was different. I knelt down by him and said, "Trenton. I know you can understand me. I want you to know that I wish things were easier for you. I wish you could talk to me and tell me what you think all the time. If I could take it away, I would. I wish I could give you my voice. I wish it was me that had to suffer instead of you." Then, I noticed two tears drop from his eyes. His face started to quiver like he was going to break down in tears. His eyes kept on watering and I continued to talk to him crying, "Trenton, it's okay to cry. Mommy cries for you everyday. You are my hero. I am by your side each step of the way to help you. I know you are in there and I am doing my best to help you." Just then two more tears rolled down his face. Andrew walked in and said, "Mommy are you sad cause Trenton can't talk?" I looked at Andrew and said, "Yes. Mommy is sad."

In that moment, I know with all of my heart that Trenton knew what I was saying and he understood. He knows I help him fight his battle every day. This is an example without a doubt that we all have a soul deep inside and that our body is just our shell. Trenton's soul is locked inside his body due to his disability. His life will be very difficult here on earth but his soul will be free one day in eternity with the Lord!

It was an amazing moment with Trenton. His tears expressed how sad he was that his life is the way it is. His tears were his way of expressing to me how he felt. It was the first time ever with Trenton that I felt a deep connection. A very deep connection!



Sunday, August 30, 2015

Weekend

I had lunch with two autism parents the other day. One of them said, " I cry almost every day." Did I want to hear those words out of another autism moms mouth? No, but just that one sentence made me feel not so alone.  It is hard to live a life where the only people that "understand" are the people in the world raising a child with autism.

Rough doesn't even explain how it has been lately. When a body doesn't get the sleep that it needs, it is beyond rough. No word can explain how bad it truly is.  Nothing can explain how terrible it is to see your child suffer daily. I am the one that sees the tiredness in his eyes at 1 AM when he can't sleep. I am the one that sees his frustrations and how terrible his night time meltdowns are when he can't sleep. On 50 % of his sleepless nights he wants to sleep but his body won't let him.

After another night of my head not even hitting a pillow, I had to have help. I don't think it could have got any worse Friday night. Friday night might just be one of the worst nights I have went through and believe me, I have had my fair share of hellish nights. Both boys were up all night. Andrew was up every hour on the hour crying and Trenton was wound and not sleeping. Andrew was angry because Trenton was up and he was loud. I could not get Trenton to be quiet and it made Andrew more angry. Therefore, Andrew was not going to sleep until Trenton calmed down. That was the scene of my night the entire night on Friday. I knew by Saturday morning I needed much needed help to survive. Daddy was in Chicago over the weekend with some friends so I had Nana come spend the weekend with me. We survived the weekend. It was so nice to have someone go to church with me too! Since I was able to walk into church with another adult, Trenton was able to go to kids church. Our church experience today was the best it has been in Terre Haute for a few months. Sadly, it is getting impossible for me to take both boys to church by myself anymore. This has been very upsetting to me lately. VERY!

After lunch, I felt brave and decided to take the boys to the park with Nana. It has been awhile since Trenton has been to a park for the mere reason that he just wants to run away. Today was no different. He played on the playground for 8 minutes and then he just took off running not even making sure anyone was with him. I took off running with him. The only thing he wanted to do was to run straight for the river. When I would not let him go to the river he had a meltdown throwing himself down on the ground...in the middle of the road...you name it...he was having a meltdown. Therefore, we had to go.

 Andrew was upset and did not want to leave the park so we promised him a banana split. Trenton lasted outside at a table for about 5-10 minutes at the Dairy Queen before he started having a tantrum. With that said, Trenton and I went to the van and waited for Andrew to finish his banana split.

Nana didn't have to come for the weekend but she knows how hard it is. We really appreciated the extra person around the house the last few days. Like I have said before, things would be easier for everyone if we got sleep at night!

1 Corinthians 16:13

 Be on your guard; stand firm in the faith; be men of courage; be strong.

Friday, August 28, 2015

Andrew

Today Andrew helped me pick up a few items in the store....


 He got treated to his favorite "ice cream" place but it is actually frozen yogurt.
 He went to try to find the ducks and geese along the river but we didn't see any.
 Therefore, he just played at the park.


Our selfie with Buzz

Sleep

I can't win for losing!! No joke! Trenton has slept great the last two nights but I have been up with Andrew. It has taken a very long time for Trenton to fall asleep. In fact for the last two weeks, it takes Trenton 3-4 hours of pacing around the house before he can fall asleep. While he paces he makes his "upset and tired" noises nonstop. The feeling I get once he falls asleep after the rough 3-4 hours is amazing! But yet again, the sensational feeling is short lived because I  live on edge never knowing when he is going to wake up. Nonetheless, once he went to sleep, he slept great! Unfortunately, Little A was up hollering my name every hour the last two night. Andrew normally sleeps better than this. However, he still has a little bit of his cold left over so I am hoping that was all it was.

Never knowing what my night brings, is very stressful! Please folks....Never take for granted the wonderful effects of a good nights sleep. Never!

In an autism house....it doesn't matter where you fall asleep or how you fall asleep.....that is how you are sleeping. I have moved kids too many times and it wakes them up and they are up for the rest of the night. I need my sleep so we sleep everywhere!


Thursday, August 27, 2015

Picky Eating with Autism

I thought I would talk about a few things tonight that I don't talk about a lot.  As always, there is always so much that I could speak about daily. It is a never ending learning experience raising children with special needs. One area that I seem to pass over is eating habits.

 Up to 70 percent of parents with children on the autism spectrum report problems with excessively narrow eating habits. Often, these tendencies continue into adolescence and adulthood.
Researchers are still trying to fully understand what causes picky eating in many of those with autism and how to intervene to expand food choices

I pack the exact same lunch for Trenton every day. Trenton will eat chicken nuggets from McDonalds only, Oreo cookies and sometimes chocolate chip cookies, goldfish, Little Debbie cakes, and fruit snacks. He goes in and out of periods where he will eat spaghetti, Cheese puffs,  crinkled cut fries only, mozzarella cheese sticks, and applesauce but the applesauce has to be a certain hand held kind only. His fruits snacks have to be Welch's only. He likes the multi-colored goldfish only.

I have to make sure that I have what he will eat in the house at all times. If I am running low on something, I go to the store and always buy his food in large quantities. On some days, he will eat only one thing and eat lots of it.

Every meal at home I always have to make something separate for Trenton. At supper time it is almost always crinkled cut fries or pizza.

When I tell this to some people I get the strangest look and then I am always asked, "What makes kids with autism eat so few things?" The answer is, I don't know and the scientist don't even know.


Andrew is a good eater. He does go through phases where he wants to eat something constantly and then he won't eat it for awhile. I think that is partly due to him having to have a routine and doesn't like to break it. Right now, he wants eggs and pancakes all the time.

Thank you

Trenton received an adorable Ninja Turtle sweatshirt jacket for his birthday in the mail. However, it did not say who it is from. So Thank you!!! We love it!!

Wednesday, August 26, 2015

Sleep Deprivation Video

Just another video of this Mom talking:)
It is in two parts because I accidently cut it off the first time.

Here is part one video.

https://www.youtube.com/watch?v=SPSKrKV5hDE

Part two video.

https://www.youtube.com/watch?v=llbVNL5KOw0

Tuesday, August 25, 2015

Memorial Preschool

Andrew and Mommy attended his preschool orientation tonight. I tried to get Andrew accepted into the public preschool program. However, the public schools start at the age of 4 in Indiana by August 1st.  However, I researched a lot of preschools in the area and found one that I thought would be the best for him. Andrew will start attending Memorial United Methodist Preschool next week. He is in the 3 year old class. I am very excited and nervous about this. Like I mentioned earlier, I attended the orientation tonight and took Andrew with me. While the parents got a brief orientation, the kids met their teachers and did a few activities with them. Andrew's teacher noticed his anxiety and restlessness right away. She said he was hard to engage with and did not want to participate like the other children. Obviously, I told her about his medical diagnosis of mild autism. Andrew did nothing but chew on his hands and fingers the entire time we were there. Andrew is completely different in a one on one setting like he has at Harsha compared to group settings like this.

I believe this is going to be great for Andrew to get him around neurotypical children. However, it is going to be hard. I predict many rough mornings....MANY! I think we are going to give this preschool an eye opening experience!


He was sure happy after his pep talk from Mommy before going tonight!
 In his preschool classroom!

Nap!

Another night with no sleep last night. Trenton slept 2 hours out of a 24 hour period.
He did take a short nap at Harsha today.
 His coach woke him up when I got there to pick him up but he was so tired he stayed asleep and slept all the way home.

Andrew returned to Harsha today after being sick on Monday.

Monday, August 24, 2015

Terrible Sleep Pattern

It is a good thing that I have had Trenton's birthday to focus on lately because it has been very rough!!!!!! There is no guarantee that Trenton will sleep at night. For the past 2 1/2 weeks, it  has just been brutal! Every night was sleepless for Trenton's first 3 1/2 years of his life. HOW IN THE WORLD DID I DO IT?!?!?!? For the past year Trenton goes through phases where he will sleep good and then sleeps terrible.  When he is in his terrible phase, I ask myself how I did it every night with no breaks for 3.5 years.

It all came crashing down last Friday. Thank goodness Andrew was at my parents because after a total sleepless night on Thursday, I was not worth a plugged nickel. It was not just the one sleepless night but it was two weeks of getting 1-2 hours a night every night before the sleepless night on Thursday.

After I took Trenton to Harsha, I went to bed. When I woke up I had a pounding headache and moved at the pace of a turtle. I didn't even feel like I was alive. I didn't feel human. I felt like I was in a daze...I was lightheaded and my body was sweating profusely. I couldn't remember what I just did the minute before. I looked like death warmed over and I sure felt like crap!

Sadly, I felt like that every day of my life before I moved to Terre Haute. I felt like that while having to drive over two hours daily just to get my children a few hours of therapy.

To tell you the truth, I have no tolerance for people who complain about being tired. No tolerance at all!! If you want to know what tired is like come live in my shoes, or another mother who has a child with severe autism who does not sleep, and you will find out what tired really feels like.

Thankfully, Trenton slept well the last two nights! Who knows what tonight brings!

T-shirts

One week left to order your Two Brothers One Journey t-shirt! They are $10! I have had several family and friends sign up for the walk and/or donated to Autism Speaks in support of the boys. Thank you!
These are the shirts we will be wearing this year. One week left to put in your order. This is not a fundraiser. These are just our t-shirts to wear on walk day:) You are only paying for the cost of the t-shirt.


Sunday, August 23, 2015

Sugar

Andrew loves Sugar! He has his cowboy hat but now I think we need some cowboy boots:)





Saturday, August 22, 2015

Birthday Party

We had a great birthday party for Trenton today! Thank you to everyone who came out today. It was a very special 5th birthday!





Ryker even made it all the way from Mt.Carmel!















Thursday, August 20, 2015

Happy Birthday T-man!

We had a great day celebrating Trenton's birthday! I even got a picture of the boys together looking happy!!!!!!!!!!!!!!!!!!!!!!!!!!!




Mommy went in to his party at Harsha! Everyone had a blast celebrating with T-man!



 

 He got a huge smile on his face when we sang, "Happy Birthday" to him. He looked down smiling during most of the song as if he was embarrassed. It was so cute!

He is smiling!!!
 After Harsha, we picked up Amanda and went out for pizza! Nana and Grandma Great was with us too. They came up to pick up Andrew to take him to Flora.
Trenton did great in the restaurant until the very end. Of course it was an "eat your food and run" experience but overall he was great!  He even ate salad!!!
 Then we went home for presents.

 He fell asleep with his new dvds on his chest and his new puzzle in the bed with him.


What an amazing birthday this kid had today! Can't wait to celebrate with the Tackitt's this weekend. Happy Birthday T-man! Mommy loves you! Always and Forever!