Thursday, July 30, 2015

Sleep

I feel like I can do a happy dance every day!!! Trenton is sleeping!!!!!!!!!!!!!!!!!!!!  This is the best phase in is life!!!!!!!!!!!!!!!!!



Final Swim Lesson

Andrew had his final swim lesson yesterday! I am very proud of him. When we started swim lessons 8 weeks ago, he was afraid of water. Now, he is not afraid of water at all and loves to do his kicks. I have really enjoyed watching his swim lessons every Wednesday this summer. I feel so blessed that I have been able to take part in them. We had a really good swim coach this summer. I am sure we will do it again next summer:)


Hebrews 11:1
11 Now faith is the substance of things hoped for, the evidence of things not seen.
 

Tuesday, July 28, 2015

Advocating Video

I had a great day!!! Here is my video explaining why I had a great day:)

https://www.youtube.com/watch?v=KI7SQ7ETvMo

Harsha Cognitive Center

It is crazy to think that it has been almost one year since the boys started attending Harsha Cognitive Center. Wow! Where does the time go?!?!?  Thinking back, I can't believe that I drove to Terre Haute two days a week and stayed in a hotel one night a week from August-December before we moved. So much.....so much happened in that time. I just can't believe time goes so fast.

I am so grateful that the good Lord led us to Harsha. Each and every person that works there means so much to me and my boys. It is so comforting knowing that when I drop the boys off, they are in good hands:) Thank you Harsha Cognitive Center for everything that you do for my boys and all the other children and young adults with autism.

A few pictures from this week! I love seeing all the smiles:)








Monday, July 27, 2015

Troubled Times

There is nothing that hurts worse than seeing your child hurting. Andrew's eyes can speak a thousand words. Yes, Andrew can talk and he talks a lot but his strongest voice is his eyes.
Yesterday, when we were leaving Flora, Andrew had the saddest look in his eyes that I have ever seen. I have seen him cry multiple times because he got hurt or was mad at Trenton but nothing spoke stronger than what I saw yesterday from him. He had the saddest look that I have ever seen.
"No Mommy. I don't want to leave. I want to live in Flora." he cried over and over in the van as we were leaving. "Mommy I want to stay in Flora. I want to stay at Nanas house. No Terre Haute!"
The cries and the look in his eyes are still eating at me today. Unfortunately, that is not the only thing eating at me, its what I had to go through dropping him off this morning at Harsha.

Andrew starts worrying the night before when he knows he has Harsha the next morning. We battle through it at night and when morning comes he says, "Don't make me go to Harsha Mommy. I want to stay home with you."

He chews on his nails during the entire car ride to Harsha. This morning he screamed and refused to go in. Therefore, I took Trenton in first. After Trenton's coach got him, I went out to the van to try to help Andrew's coach get him out of the van. The look he had in his eyes, pulled at every heart string that I have. His anxiety was high and he could not bring himself to go in Harsha. We tried everything that we could. I finally carried him in crying and left him crying and hollering my name.

 Out I walked holding back my tears. I know every parent goes through this at one time or another with their children. However, it is knowing the problems that my boys have makes it worse. It eats at me all day long. Sometimes I wish I didn't know so much but if I didn't how would I be able to help my boys? I sure wouldn't be able to help them as much as I do now.

To make matters worse, Trenton has had a rough few days with controlling his anger. The past three days he is back to hitting me, jumping in the air and landing on his knees while making his upset noises. Then he gets up and hits me again. Also, he runs and hits at me while running into me. It has been one month since he has had this behavior and it has been back the past few days.

It is truly amazing how if I just take one behavior away, such as Trenton's meltdowns, how much smoother our days can go. It is astonishing how much easier things are when Trenton has good behavior without any meltdown or tantrums. ABSOLUTEY AMAZING!!!!
I can't express the feeling that I get when I know the behavior is back. My stomach does flips and flops and it is instant frustration deep inside me because just that one trait of autism makes a world of difference in our days.

However, I am so thankful for the days when he does not display the unruly behavior. I am lucky to have breaks from it where he does not display it. I am sure there are people out whose child with autism has that behavior every single day. So yes, I can find the good in the bad...it is what I do!

As of right now, both boys are in bed and I am so thankful for this quiet time. Every time I get to sit and do a post in peace and quiet, it is a true blessing and miracle....especially how rough our last few days have been.....especially since I was not able to even take a five minute break today because the house was pure disgusting and needed some major cleaning. The little time that I get to do cleaning lately has been spent on trying to put a protectant on our fence. ( I am not able to clean, cook, or do ANYTHING when the boys are around or awake. Andrew is attached to my hip and Trenton always needs something.) So my time is precious and every single second counts. 

While I was working today and thinking about how rough the past few days have been, I really thought how nice it would be to be able to de-stress with my spouse. If I could change anything about my life it would not be the boys, it would be my marriage. Sadly, my spouse and I have went down two different roads since our journey of special needs started. We fall in the 80% category where the marriage falls apart. I went down the road of being actively involved with the boys and their special needs and my husband went down the road that separated himself from their special needs. I refrain from talking about that part of my life on this blog out of respect to some people. However, I can't help but spend time in deep thought of how easier our life could be if my husband still believed in God like I do and believed in his plan. I say it that way because if we believe then we "do the work" and there is much work to be done with our type of life. There is good and things to be thankful in every situation. Even the past few days with how awful they have been, there has been good.

Friday, July 24, 2015

I love Nana

This morning on our way to speech therapy, Andrew was asking me the normal questions, "Can we go to Nana's house today?" I went on to explain like I do every morning that Nana lives too far away to see her every day now since we moved.
I am assuming that Trenton was thinking about Nana since Andrew brought her up because after speech when I was dropping him off at Harsha Trenton spontaneously said, "I love Nana."

I was super excited!! I worked so hard for him to say what he did yesterday and he just says, " I love Nana." so easily! Very very proud of this boy!!


Sitting on the potty at Harsha
 This picture is from last week. I love how Harsha has worked with him on holding hands!!!
 While brother worked hard at Harsha, Andrew and I found some time for the pool! I made Andrew practice his kicks and he did really good. He practiced kicking for over an hour!

Trust

This year will be our 4th walk for Autism Speaks. I can't believe it is going to be our 4th! It seems like just yesterday I was walking up to my first walk. It was just two short months after his diagnosis and 6 short months after I knew for sure that Trenton had autism. I walked up with tears in my eyes and fought back tears the entire time. The second and third year we walked at STL for the walk I fought back tears. I think I will always fight back the tears on walk day. I'm not fighting back tears because I am sad....its tears of joy, happiness, sorrow, pride, hope, and courage.
I am so honored to say that after three years of this journey, I already have landed a lead role in the walk for autism in Terre Haute.
It is truly amazing how when we put our trust and faith in God that it all works out!

Right after Trenton's diagnosis I felt so helpless. I didn't know what to do or where to go. I went through the stages of grief and then some. Some people stay in certain stages for years upon years. I went through all the stages of grief within that year. It is like a whole new life when you enter into the acceptance stage. When I reached acceptance I also learned how to totally turn my worries over to the Lord. Now don't get me wrong, I still worry about the boys...that is human nature.  Nonetheless, when my cares were totally casted upon the Lord I reached acceptance and our life just took off for the better. One thing lead to another and another and here we are in Terre Haute.

I have done 99% of all the work for the boys therapies, IEP meetings, and everything else that goes into the crazy therapy schedule. My husband is the first to admit that he can't do it. Do I wish he could? Yes, because things would be so much easier and so much less stressful. However, I wasn't in it alone. God took care of me and him and I have fought the battles together and he lead us to Terre Haute where we needed to be! I have never once prayed for things that I wanted for myself since this journey but God knows. Once I reached acceptance I knew I wanted to be a powerhouse in the autism world. I wanted to be a strong voice for not only my sons but for all the precious individuals whose life was robbed from autism. I am fortunate to say that I have landed not only the lead role in the autism walk in Terre Haute but now I am taking part in an interview that will air on the local tv station about autism next week. I have wrote articles for Autism Speaks and The Mighty and I will just say that I have much more bigger hopes in the future.

With all of that said, it is amazing how beautiful you can make your life no matter what the circumstances are when you put your trust in the Lord. This life is nothing but a huge test for each and everyone of us. Some of us get a much bigger and harder test. But when you have the faith, it all works out!

Here is the link to sign up to walk on Two Brothers One Journey on October 3rd.

http://www.walknowforautismspeaks.org/faf/search/searchTeamPart.asp?ievent=1139477&lis=1&kntae1139477=08F1758E6B40485FBBC627CADC6A33DD&team=6376003

Thursday, July 23, 2015

Dvds

Each and every person is different in their own little way. Most  kids Trenton's age are into sports, cars, trucks, or any of your typical 5 year old toys. Trenton, however, is not into any of those. Nonetheless, there is nothing that brings a bigger smile to my face than the things that he loves and that is his dvds!!!


 His dvds going everywhere with him.
 I even find them on the toilet:)


Of course, he loves looking at his Brainy Baby books because they are very similar to his Brainy Baby dvds.


I love you Mommy

After much practice this morning, I got Trenton to say, "I love you Mommy." after me prompting him with saying, "I"
I was lucky enough to capture it on video!!!!!!!!!!!!

https://www.youtube.com/watch?v=NWdTXC0hb1Y

Wednesday, July 22, 2015

Asperger Syndrome

I am reading a book right now on Aspergers Syndrome. Doctors do not diagnose Aspergers Syndrome anymore. The symptoms of Aspergers gets the diagnosis of mild autism. The change happened last year in 2014. Anyway, as I am reading this book I can only think of one thing and that is Andrew! WOW....this book is totally preparing me for my future with Andrew.
The book gives numerous scenarios and I can picture Andrew doing every single one of them. I would like to share one small example from the book:

One mother told the story of thirteen year old Jamie's first meeting with her cousin's boyfriend. As the sixteen year old cousin introduced her boyfriend, Jamie looked closely at the young man. When it was her turn to greet him, Jamie blurted out, "Your face is covered with acne!"

While most thirteen year old girls would have noticed the young man's unfortunate case of acne, most would also have avoided comment. Even after the cousin and her boyfriend left, Jamie was unable to understand her mother's admonition against such remarks. "But, Mom." she said, "He does have acne. You always tell me not to lie."

Andrew tells me all the time that he doesn't like certain people and that he doesn't like _____ shirt. He also tells me all the time that he doesn't like _______ because she/he looks mean. He comments all the time when we are in stores if the person next to us looks nice or mean...he also tells me if the person is big or small. Andrew and his disability do not lie and tell exactly what is on his mind.

Here are a few of my conversations with Andrew the past week. (Please no one take offense to these comments. It is just Andrew.)

Andrew says, "Mommy, I don't want to be Daddy."
Mommy says, "What are you talking about. I don't understand."
Andrew says, " I don't want to be like Daddy."
Mommy says, "You can be however you want to be. If you don't want to be like Daddy, you don't have to be. You can just be like Andrew."
Andrew says, " I don't want to be a daddy. I just want to be a brother. I am a brother. I can't be a daddy."


Andrew says, "Is Lincoln my cousin?"
I say, "Yes he is your cousin."
Andrew says, "Is C.J. my cousin?"
I say, "Yes, C.J is your cousin."
Andrew says, " I don't want C.J to be my cousin. I already have one cousin and that is all I need."
I say, " Well, Lincoln is getting a baby brother really soon and he will be your cousin too."
Andrew says, "Lincoln is my only cousin Mommy."

Andrew says, "I don't like people."
I say, "Why? You should like everybody Andrew."
Andrew says, "I don't like the way people look at me."
I say, " Well, if someone is looking at you and you don't want them to can you try to ignore it?"
Andrew says, "No! I tell them I don't like them and to stop looking at me."

Andrew, " I don't want to go to Harsha?"
I say, "Why don't you want to go to Harsha Bubba? You like Harsha."
Andrew says, " I don't like Harsha anymore. Its hard to play with people."


Andrew has changed a lot lately. He has made huge gains in some areas but he is still way behind in other areas. I remember posting on my first blog how much I felt like I missed out on Andrew's life because Trenton wanted only me at all times. Wow, things have sure changed! Andrew and Trenton have switched roles! I am the only person that can do anything with Andrew. I have to be by him at all times or he is looking for me. If he doesn't find me, he starts panicking.  If I try to sneak out on Wednesday nights and take a walk, about 75% of the time I come back to Andrew crying or upset because I had left him. I am the only person that can help soothe him to sleep. He occasionally lets my mom but that is about it.

If I am taking a shower, he has to sit in the bathroom with me. If I a putting on my make-up or doing my hair, he is right there with me. If I am making his breakfast, he has to be on my hip. It simply doesn't matter, I have to be within eye shot of Andrew about 85% of the time. The only exception to all of this is if little kids, like his cousins are around. Then he gets in a zone and I am okay to be away from him.

I never thought I would say that Trenton is much easier to take care of these days than Andrew but he is!! Trenton was home with diarrhea again today and I was not able to interact with Trenton one time today. I had to be with Andrew at all times. If I wasn't, he was looking for me and making sure I was right there.

Now, I know a lot of kids enjoy being by their parents at all times but the child is normally okay with either parent and the child is younger. Andrew will be 4 this fall. He can't play by himself. His play with toys is very limited or it is all "learned play". He can't come up with anything on his own.

Like I mentioned before in a post not too long ago, Andrew chews on his fingers like crazy when we are out in public. I have noticed when people talk to him when we are out in public,  he either says something totally random to them or he tells them to not talk to him.

Our life is always an adventure!!! Yes, it is hard but totally rewarding at the same time. It is a totally different parenting style and totally different life than most but I would not trade my angels for anything in the world!!

So much more I could say on Andrew but it is getting late....I never know if I am going to get sleep or not so can't stay up too late:)

Mommy video

Mommy video. In this video I talk about a few of what I consider the "hardest" things about raising a child with autism.

https://www.youtube.com/watch?v=I8nkn_I4YcM


Monday, July 20, 2015

Trenton

Trenton had diarrhea this morning at Harsha so he came home and spent the day with Mommy! It was nice to enjoy time with Trenton alone. He loved looking at the camera on my phone. He would say "picture" and touch my phone to let me know that he wanted to take pictures. I love the first picture. I love the grin on his face!


 Once he discovered that you can put my camera on a very dark setting, that is how he wanted it.
 He wanted me to take lots of pictures of him and his dvds.

I don't get much time alone with Trenton these days. It was very nice to have that today. I love to just watch him and wonder what he is thinking as he does his thing. I can't believe in one month he will be 5 years old. It does not seem possible. In the last 5 years I feel like I have aged 20 years due to autism. The progress we have made is so small and slow. The worry of the future is always there. I have casted my cares to the good Lord but it is natural to think about your child's future. It is natural to hurt for your child when you know what their future holds. It is a hurt that I wouldn't wish upon anyone.

Sunday, July 19, 2015

Fair

Saturday was such a bitter-sweet day. It was a day full of great times hidden behind a broken heart.

One never gets over the loss of a child. When a parent buries a child, that parent mourns for the rest of their life. Do you put a time limit on a parent to mourn? I don't think so. It is the same for parents with special needs children. A parent never gets over the loss of a healthy neuroptyical child without disabilities. I have heard many professionals say that if a parent claims to not be mourning for the rest of their life then there is something obviously wrong with the parent such as denial. I couldn't agree more. It is human nature to mourn the loss of your child and it is human nature to mourn for your child with special needs for the rest of your life.

On Saturday, Nana, Pops, Uncle Brian, Aunt Mindy, and Lincoln came for a visit. We all went to the fair. I have to say that the fair here is a very nice fair! In the afternoon, Nana and I took Andrew to ride some rides. He had looked forward to the rides the entire week. It was so much fun to walk hand in hand with him and watch him ride the rides. His smile was priceless! I cherished every minute that God gave me with him. I am very thankful and blessed that Andrew was able to enjoy the fair. It is not an easy experience with him by no means due to his mild autism, but to a mother of a child with severe autism, it is very easy.

After we rode some rides, we met the rest of the gang at our house and then we headed back in the evening to watch the demolition derby. Andrew tolerated the derby for one hour and then I had to leave with him. He was more interested in the rides.

All in all, it was a great experience!! I am beyond blessed that I have one child that I can experience this with. I am very thankful for the time that I had with Andrew. On the other hand, my heart hurts for Trenton. I wish his little body would let him do something so simple as going to the county fair. My heart not only breaks for Trenton but it breaks for Andrew. Andrew loved every minute of the fair with Lincoln, his cousin. I have to wonder what it would be like if Andrew could experience that with his brother. I can just picture Andrew's face now smiling and laughing with Trenton.
Sadly, the other morning Andrew asked me why Trenton never told him bye when we drop him off at Harsha on Tuesday and Fridays. I had a nice long talk with Andrew but not sure how much he actually took in.
Trenton had a nice quiet afternoon and evening just like he likes at home:) He was very cuddly this weekend and Nana and Pops loved every minute of it:) He even cuddled with them at church this morning.


Andrew's favorite ride was the motorcycles.



He doesn't look happy here but this was one of his favorite parts from the whole day. He rode a pony twice and asked me at least 5 other times if he could ride them again. If it didn't cost 5 bucks every time I would have let him ride all the day long. Andrew loves horses! My goal in life is to get him a horse!


Having fun waiting for the derby.


The three of us rode the scrambler. I haven't laughed so hard in a long time....what happened on the scrambler....stays on the scrambler!

Waiting for Mommy  and Nana....Pops got some cuddle time.

Friday, July 17, 2015

Sleep

It has been two weeks of this little man sleeping well!!!
Plus, he falls asleep with his dvds every night!



Thursday, July 16, 2015

An Autism Fair Experience

As summer time in the U.S. is underway, so is county fairs. As a child, I loved fair week! I loved going to the fair and getting a corn dog, riding the rides, looking at the animals, and watching the fair queen pageant. I wish I would have realized then that such a simple task was such a blessing to be able to do.

I suppose I will learn my lesson one of these days and stop trying but it is hard to stop. It doesn't matter if I get beat to the curb, I still try. I still try to take Trenton places. This afternoon after I picked the boys and Amanda up, we went straight to the fair so Trenton could see the animals.

I was so proud of the way Trenton held my hand and Amanda's hand. He walked with us and did not try to run away. I have to thank Harsha Cognitive Center for all the hard work and practice that they have completed with Trenton on this task. One year ago, he would not have been able to hold my hand and walk in public. However, he did it tonight and I was so proud. Unfortunately, once we arrived where the animals were, Trenton wanted nothing to do with them. He just wanted to keep on walking. So that is pretty much what we did.

Andrew spotted that some rides were open so while Trenton was still being good, I bought some tickets for some rides. Amanda had Andrew and I had Trenton. Every thing is still great at this point. Trenton spotted an elephant ride so I took him to that ride. There was no line...yay! We got on the ride and he immediately wanted off as soon as it moved. I fought Trenton the whole time to keep him in the ride. If he was by himself, he would have jumped out and either got hurt or killed.

As the ride stopped, he was crying. At this point, I knew my good times were done. Next, he spotted one of those games where you play and win a stuffed animal. This is where the bad turned ugly.

Trenton immediately went into a meltdown. He was saying, "Tiger." over and over and over. I tried to explain that they weren't to buy. The lady at the stand asked me if I wanted to play. I responded, "No but I want to buy that tiger."
"Oh those aren't for sale." she says.
"I know but I want to buy it. If I can't where can I buy one?" I asked.
We don't sell any animals here you have to win them." She said.

All the while I am talking to her, Trenton is pulling away from me trying to climb over the game. He is knocking stuffed animals down. I tried over and over to pick him up but he just kept kicking me and screaming. People were looking to see what the scene was. At this point I an not sure if my blood was boiling from all the gawkers or the brutally hot sun.

I managed to find Amanda and Andrew, I told her what as going on. I took Trenton to the car. The whole way to the car he was crying, screaming, and yelling "Tiger. I want Tiger." I have no doubt that he said that almost 100 times. He kept on throwing himself down on the ground. I would force him up to only get hit at again. I had never heard him use his words repeatedly like that!

Finally we made it to the van. I could not take it anymore. My ears could not hear him say, "I want tiger." anymore. My heart was broken for him. He wanted a tiger so bad and couldn't understand why he couldn't have it. I was desperate so I took him to Toys R Us for a tiger. Now, you have to know that I was desperate to take him to a store when he is already having a meltdown. Trenton can not handle stores but I wanted to get him a tiger so bad that I would do anything to make that happen.

I carried him into Toys R Us crying and yes he was still saying, " I want tiger." I took him straight to the stuffed animal section and the tears stopped instantly. He smiled and said, "Tiger" and grabbed it!!!!!!!!! Mommy's heart was happy! Trenton was happy! We even walked out of the store without crying!

 Yes, he even got a parrot.
 He went to bed tonight with his tiger!!!
 So thankful that Amanda took a picture of Andrew enjoying a ride for me:)

Wednesday, July 15, 2015

The good & bad parts of our day

I am very pleased to report that the boys and I had a smooth time today going to and from speech therapy. Today was the first time since Trenton started with his speech therapist that he did not hit her and cooperated very well! It was the first time that he walked out to the van after his session and not me carrying him kicking and screaming. Do you know how exciting this is!!!!!!!!!!!!!!!!! So sad but true! I felt like I was on top of the world leaving speech therapy today!

Andrew on the other hand, showed his bad side again today. He did not want to go to story time at the library but I finally got him to walk in. He walked in chewing on his fingers. I have noticed that he does this when he is nervous and when his anxiety starts rising. I kept on talking to him and trying my best to put him at ease. We walk into the class just in time to get started. We sat down and 30 seconds later he stands up screaming. He was screaming so hard he could have shattered glass. He starts yelling, " No library. I'm going." I tried to calm him down but that was not going to happen. All 25 sets of eyes were on us and I am sure they were thinking, "What in the world just overcame that kid."

I just scooped him up and we ran out of the library turning every head in the building as if we were someone famous. I don't think I ever had so many people looking to see what the commotion was going from the bottom floor to the top floor and then all the way to the parking lot. Needless to say......I won't be making an appearance there any time soon.

Andrew gives me a difficult time every morning not wanting to go to Harsha too. I am starting to put two and two together here. I believe things are more difficult for Andrew than we realize. I think he fights anxiety more than we realize. I think he knows that other kids his age can do things that he can't. I think he wants to have friends but does not know how to make them. Therefore, he doesn't want to go to the places that make all of this worse. We really have a long haul ahead of us with Andrew too!



After our disastrous experience at the library, we were off to swimming lessons. I am so thankful he has a patient swim coach. Andrew can not focus and do what he says at all. Then, when his coach finally got him to focus, Andrew is too scared to do it. For instance, his coach was trying to have Andrew jump in the pool today. His coach was trying to stand him up on the edge but Andrew was sticking his legs out as stiff as a dead mouse so he could not stand him on the edge. Unfortunately, he never got him to relax his legs and jump in. Andrew kept on crying, "Mommy. I want Mommy." Swim lessons were not enjoyable for Andrew today and I am afraid they won't be either for a long time.
He only wanted to go to swim lessons in the first place because of his new goggles.



After our crazy morning, Andrew and I met Grandma, Aunt Chris, C.J., and Daddy at the fair. We had a great time eating fair food and looking at the tractors!




 Andrew enjoyed the rabbits but he got really scared at all the other animals.
 He did let me take a picture of him with the sheep but refused to get down and pet them.