Thursday, September 3, 2015

Park

A few mornings ago I was in the park waiting for Andrew to get out of preschool. There is a really nice park close to his school and since his school is bit of a drive from our house, I use that two hours to exercise and/or do volunteer work for the Autism Speaks Walk. It just so happened the other day when I was in the park that I spotted a young man that I would predict was in his early twenties. I just had to take one look at him and I knew he had autism. He was with a woman that I would say was my age. I would guess that they weren't related and that she was a respite worker for his parents. I admired him from a distance. I sat and watched him with tears of sadness and empathy. It is so saddening to me that there are so many people that suffer from autism. While I was watching him I couldn't help but think how amazing and beautiful he was! As many people in our society would look down upon him and run from the "strange" grown man but I looked at him with an open heart and saw the beauty that lied in his unique life.

After I was done admiring and crying it was time for me to leave the park. I got in my van and as I drove out of the park I saw a van unloading disabled people in the park. The van was from a facility in town that housed disabled people. The two grown men that stuck out to me were walking in circles, flapping their hands, and one was wearing a helmet. Again, I knew they had autism. The one that I could not take my eyes off of was a man in his thirties with dirty blonde hair.  I felt as if I was seeing a glimpse into my future. I literally spoke the words out loud, " It looks like a grown Trenton." I instantly started crying and needless to say I could not watch him for very long. I felt like I was watching my future with him. Sometimes I think God gives us glimpses to what our life ahead has in store for us.

I keep thinking back to that morning. Our life is rough now. Trenton's life is very rough but these are the good times! As they get older comes more worries and more heartache dealing with legal guardianship of your disabled children, etc. Then comes the worry even more then that I am older and one day closer to my own death. Who is going to take care of my children when I am gone? Trenton will always need to be taken care of......who is going to do that when I am 6 feet under? To often the homes for adults with disabilities do not have the most loving and passionate workers working for them. Will someone abuse him knowing that he is disabled and can't express what happened? Do I really need to go in more detail of what mothers like me worry about?!?!? I find comfort in other special needs parents because they admit this too.

Here are some of the many sleeping positions of Trenton the past week.



Tuesday, September 1, 2015

Preschool

Andrew had his first day at Memorial Preschool! I was more excited than him I think! I just love being a Mommy and I am so blessed and thankful that I had the opportunity to be a part of his first day of school ever!
The parking lot to the school was packed with moms, dads, and grandparents seeing their children off for their first big day. I enjoyed every minute of it!



 Walking up to his school! So proud of this little boy!
After I picked him up, he told me that he stood in line behind the line leader. He also told me that he had raisins as a snack and didn't like them. Then he said, "Did you know raisins were grapes, Mom!"
He told me he played on the playground and rode a tricycle. I think we had an excellent first day!

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!