Sunday, April 19, 2015

Autism Awareness Event

It has been a terrible 24 hours. Our Saturday started off great. We got up and headed to Flora for another autism awareness event. I am so proud of my hometown for everything that they offer in April in honor of autism. My small hometown does so much more than a lot of big towns.
Anyway, I wish I could say that I enjoyed this beautiful event. However, I was not able to relax and enjoy it. The only time Trenton was happy and not crying...and not having a meltdown was when he was in the bouncy house and doing the art tent. It was simply WAY too much for Trenton and he could not handle all the extra stimuli.

When we arrived I took him straight to the bouncy house. He enjoyed it. He tried to run off several times. He would not hold my hand. He was hitting at me and making his frustrated noises. I knew at this point it was going to get ugly.

He went to the art tent next. He enjoyed the paint. It was the perfect tactile sensory need that he needed at this point. After a few short minutes, we couldn't control him with the paint. All he wanted to do was dump all of the paint everywhere. He started to hit again. His frustrated noises were getting worse. He was making a huge mess and causing a scene.

I had to pull him away from the tent with him kicking, screaming, crying and hitting. At this time the music started on stage. Trenton went crazy. He got on stage and would not leave anything alone. He went crazy and I could not control him. Everyone at the event was watching the musical performance and I was right in the middle of the performers trying to control Trenton and get him off stage. All of the other families were able to watch with their child with autism except me. It is very sad and depressing when I am the only one who had an uncontrollable child there. This is where the difference in severe and milder forms of autism come into play.  Andrew was able to participate and enjoy the entire event including the walk, music, and other activities and especially playing with Lincoln and the other kids there.

I had to carry him off the stage kicking, crying, hitting, and screaming. When I put him down he took off on a dead run to the road and pond. I have never seen Pops run so fast to help me try to catch him. When we caught him, Pops took him back to their house. Trenton was in a full blown autistic meltdown at this point and I was unable to control him. Poor Pops dealt with Trenton's meltdown for the next two hours. I stayed at the park with Andrew and Nana and the rest of the people who came to show us support.

Later in the evening, Trenton had more meltdowns. I haven't seen meltdowns like this from Trenton that lasted hours in a year. Unfortunately, Trenton didn't sleep and has been up for the majority of the night.

I know there is no way these words can make a person understand the life that Trenton lives and the life that I live taking care of him. The past 24 hours have been HELL!  It is sad that some people just simply don't believe me. I, in no way, exaggerate any of this. I have many witnesses to what happened yesterday. In fact, I had a local photographer ask if she could take pictures and make a documentary of my life to let people know what I go through. She saw it and understood.

On days like this I can't help but worry what life is going to be like in a few more years when he is bigger and stronger. So many families have to send their child to a special place or home when they get too strong for their parents to handle. This is one of  my fears for Trenton.

For now, this is just another lesson of why we are prisoners in our own home.....why we can't go anywhere!

Art tent!





Walking the walk with Mason, our old neighbor.
Just a small portion of our family, friends, neighbors, and church family who came.
Andrew enjoying some music time!

Friday, April 17, 2015

Hard at Work!

After our class at the library, Andrew and I got busy working! I didn't get done with everything that I had planned but that is how it goes when I am trying to get some work done while watching Little A.



I love orange lilies! After Andrew and I planted these three that you see in the below picture, he had a huge tantrum. I am guessing he didn't like where I planted the last one....I am not sure but when I turned around from spreading mulch down, Andrew had the tulip in his hands tearing it to shreds while screaming. I am sure the neighbors enjoyed his little fit.
Although his tantrum in our front yard was bad, it wasn't half as bad as the one he had at the library today. Andrew hit two girls on purpose with a toy. One little girl left screaming holding her eye. The first mother was polite about it but the second mother was not. This was after he screamed at a little boy until he left him alone. Andrew's behavior's are getting worse at the library. He use to love to participate in the music makers class on Friday morning. However, for the past month, I can't get him to participate and he will not play appropriately with the other kids. I am positive the other mothers and fathers are starting to talk about Andrew and I.

Trenton saying his name!

I have heard Trenton say his name before but it is after we say it. Today was the first time I have heard him say his name after being asked!!! I am so thankful that Harsha got it on video for me!!
Kids with autism work for reinforcers. Trenton will work hard for things that he wants. Lately, Trenton has to have his dvds with him at all times. In the video he wants his dvds but he knows he won't get them until he does what his therapist is asking him. This is an example of ABA therapy. This is how kids with autism learn. It is how we can get them to communicate.
https://www.youtube.com/watch?v=xbVvrt_w4O8&feature=youtu.be

I am one proud Mommy today!! I had to post this once I got it to share my good news!!

He also said, "I want Mommy." today at Harsha!! I am on cloud nine! Keep up the good work T-man!!!!

Thursday, April 16, 2015

First Time for Everything

There is a first time for everything!

Tonight both boys fell asleep in their beds!!!!! Plus, they both did it without wanting me right by their side!!!!

It's not unusual for Trenton to fall asleep by himself. He has been falling asleep in his bed about 50% of the time.
What is unusual is Andrew falling asleep by himself and not crying for me to be right by his side. Just the past two weeks Andrew has been falling asleep in his bed. Up until this time, he has wanted to be cuddled and rocked to sleep. It has been a comfort to Andrew at the end of the day to rock in a rocking chair. Now, I think he is too big to get comfortable on my lap so he is starting to go to sleep in bed with me laying in bed with him.



Wednesday, April 15, 2015

Sorry

Tuesday morning was a very rough morning. Both boys were in terrible moods. They kept on fighting over everything!
 Trenton was giving me a horrible time trying to change his clothes. I showed him pictures on his schedule and I talked to him and told him that we had to get our clothes on for Harsha. But, he was not having it. He kept on hitting me to go away. This went on for close to a half hour. Finally, it was time that he had to be changed so we could leave. As I was forcing clothes on him, he started to kick and hit me hard. After a few seconds, he stopped and said, "sorry." My jaw hit the floor! I have never heard Trenton spontaneously say, "sorry" before! Only a mother of a non-verbal child could be as happy as I was at that moment! I could have cared less that he was hitting me and kicking me. HE SAID SORRY!!!!!
We battled getting clothes on for the next few minutes. He kept on hitting and kicking me and two more times it sounded like he said, "sorry."

Very proud of him!! Words are very hard for him and of all things he said, "sorry." It is just another reminder that he lives in a body that does not allow him to act like he is paying attention to our world but he sure is.
I am so proud to call him my son!

Tuesday, April 14, 2015

Autism Speaks Article

I am honored that Autism Speaks published my article!!!

https://www.autismspeaks.org/blog/2015/04/14/how-autism-baseball-game-made-world-difference-my-family

One Year Later


It has been one year today since Andrew’s diagnosis of autism. One year ago today, Tim and I traveled home with the devastating news. Did it come as a shock? No. To many it did because Andrew’s autism is completely opposite of Trenton’s. However, it was not a shock to me. A mother knows when something is not right.

I think back to where Andrew was one year ago today and it is AMAZING to think about his progress. A year ago he mainly repeated back what we said to him or spoke lines that he had memorized from shows or things that we had said to him. Andrew would take the words right out of my mouth at the same time every day because he knew what I was going to say. He had memorized what I said. However, functional communication was very low a year ago. After one year of hard work, Andrew is talking well! He can communicate amazingly well! He will look at me and ask me a question. He has been blessed with the ability to communicate! It did not come easy to him. He worked hard to get where he is today with his speech. We have spent lots of money to get his communication where it is today.

A year ago Andrew enjoyed lining up his toys. Today, I can’t even remember the last time he did this! Once again, he has worked hard to overcome some receptive behaviors that he had and that was one that is very minimal these days.
Here are a few of my favorite lines that Andrew did one year ago.




 The below picture was the day that I knew in my heart that Andrew had autism. My mom sent me this picture in a text. I was on my way to Effingham with Trenton to therapy. I pulled over to the side of the road and cried. I have always been told that it is okay if kids make lines with cars and trucks if they also are pretending to play with them. But, it is not okay if a child makes a line out of everything. The below picture has trucks, hammer, random toys, a block, etc.




Andrew was such a normal developing child for a very long time. He slowly started to withdraw from us around 20 months old. Andrew went through a terrible period when he was 20 months to 29 months old. He woke up screaming in the night and was inconsolable. He stopped greeting us when we came home. He only wanted Mommy for a majority of this time. He was okay with Daddy and Nana at times but it had to be on his terms. Andrew was starting to fall into the world of autism. Family members that he once loved, he started to withdraw from. He noticed kids but didn’t know how to play with them. He was afraid of bathrooms. He was afraid of certain places. During this period, he really started to get his obsession and preservations. They soon dictated his day. He started to have meltdowns that were very similar to Trenton’s. The type of meltdown that you only see in a child who has a problem, not a neurotypical child.

Thankfully, we got him diagnosed early enough and started therapies. Andrew is where he is today because of his hard work. It has not been easy. He has sacrificed and so has many others. He has had the best of the best working with him. Andrew has a long way to go on his social/adaptive behaviors but we will continue to work on this for many years to come. A lot of things may never come easy to Andrew but he has proven that he is a fighter.

He has brought so much joy to my life. He, along with his brother, have really taught me what is important in life. I can’t thank him enough for that.  Andrew has shown me a complete opposite  type of autism than his brother. I am by no means an expert on autism but when you are raising two boys on opposite ends of the spectrum…you sure do get educated.
I will remain Andrew's strongest advocate for mild autism. I look forward to looking back one year from now and to see the progress that he has made in another year!
Keep up the good fight Andrew. Autism picked the wrong family to mess with:)
Love you Little A!!


My cute little angel sleeping:)