Thursday, April 30, 2015

Mommy

I received a fantastic video via text today from one of Trenton's ABA coaches!  Trenton kept on going to the window, pointing to the parking lot saying, "Mommy."
It melts my heart! These small but magnificent things that Trenton does give me my energy to keep me going. Just when I start questioning whether Trenton loves me because he can't show it, I get to hear something like this and it answers my question. The hurt and pain is unbearable at times but moments like this is the gas to my empty tank.

https://www.youtube.com/watch?v=P8RPOny_Pn4


The Attack of Death!

During the month of May, the library does not have the classes that I have been taking Andrew to. They take a break in order to prepare for the busy months of June and July. After Andrew's behavior there yesterday, it is a good thing we are not going back for a month!

Andrew is always the one child there that does not pay attention. He is the one child that pushed other kids and the only child to ever throw toys. Well, yesterday he sure left his stamp and it was not a stamp of approval.

For no reason what so ever, he attacked another girl. I am NOT exaggerating when I say that Andrew snapped! He was fine one second and the next second Andrew let out his blood curdling scream, had an evil look out of his eye and attacked a girl. The girl did absolutely nothing to him. Andrew took his arm and hit her in the face and kept on hitting her. All eyes went to Andrew and Mommy. The teacher was in complete shock! I handle the situation with all 20 eyes from the adults on me. I tried to get Andrew to apologize but he would not. As soon as I took my hands off of him, he turned around and attacked her again. Once again, all eyes on me and the room was as quiet as a morgue full of bodies.

Thank goodness, it was close to the end of the class! Andrew and I grabbed our items and left. I have to say the mother to the little girl was awesome about it all. She chased after me and said, "Don't worry about it. Keep on doing what you are doing and get him around normal kids and he will get better."
I appreciated her words more than I can express!

Wednesday, April 29, 2015

Sleeping Pictures

I love looking at pictures of them sleeping. Sleep is so hard for Trenton. He looks like a precious angel free of his trials when he is sleeping.
I tell myself when I am up with him in the night that I can do it! I spend the night up with him....its the least I could do for him to show him my support and love. After all, he is the one that fights the real battle.




 This picture was at 5:30 in the morning when he finally went to sleep after a sleepless night. I am sure you can tell by his face he snacked on Oreo cookies in the night.

Monday, April 27, 2015

Trenton's Dental Appointment



Trenton had a trip to the dentist today. Taking Trenton to the dentist and doctor is always a very traumatic experience for him. On days where Trenton has these appointments, I feel like a soldier getting ready for a huge battle. I think back to his past experiences of how it was and I get prepared for the worst. I have a plan of action for all of the things that could go wrong. I go into the appointments prepared to become a grizzly bear if I need to:)

However, today it all went well. From that I mean we had no meltdowns or tantrums!!! Trenton cried from the time we walked in to the time we left. Trenton has different kinds of cries just like he has different kinds of noises for certain situations. Today he had his sad cry. He cried his huge crocodile tears with a constant frown. He walked and paced the waiting room crying until we got called back.
I was very proud of him! It was the best he has done for the dentist. The dentist and I held him down and there were two assistants helping us on both sides of Trenton. The dentist was able to get a good look at his teeth. I am excited to report he has no cavities!!!

One of Trenton's ABA therapist came along with us to his appointment this morning. It was so nice to have her there with us.
He went on to Harsha this afternoon after his appointment and he had a good day!




Good job today Trenton! You make me so proud. Keep up the good fight Bubba!

Autsim Research Project

If you are an autism mom and want to help out in a study, then contact Catherine. Her information is in the picture below.

Sunday, April 26, 2015

Bust A Gut!

Andrew cracks me up! Seriously, I bust a gut daily because of him! Some of the things that he says is completely adorable. It is so cute now at his age but I can't help but think what it will be like when he is older and when it is not so cute and inappropriate. Hence, this is why he blends in now and some people have a hard time believing he has autism. However, I know from teaching and being around older kids with autism who have  the ability to talk, that it is not so cute when they are older. However, I won't get into that now. I will enjoy the moment and laugh at him because it is cute and acceptable now:)
People with autism always say what is on their mind. They do not lie. They repeat and use language that others say (we have found this out with Andrew in some bad ways and good ways). Language is very literal to individuals on the spectrum.

Here are some of the things Andrew has said lately.

1. He randomly walked up to a lady at the library two weeks ago and said, "I go to church. I like church." The lady just looked at him and said, "Oh well that's nice."
2. While I was putting on my make-up last week, Andrew walks in on me and says, "Yes Mommy. You are pretty now."
3. I was in the bathroom with Andrew the other day. I had just finished my hair and put on my clothes. Andrew looks at me and says, "No Mommy. Not that hair."
I said, "OK. well should I pull it back?" I pulled my hair back and Andrew said, "Yes Mommy I like that hair with that shirt."
4. I was in his room this morning and picked out his outfit. I showed it to him and said, "This is what you are going to wear today to church."
Andrew wrinkled up is nose and said, "I am not handsome in that shirt."
5. When we were leaving church this morning, I asked Andrew if he had a good time in kids church.
Andrew replies, "I told everyone that I was handsome."
A few seconds later Andrew says, "Trenton is handsome too."
6. Andrew asked me something the other day and I can't remember what he even asked now. Anyway, my reply was, "Maybe one day Andrew."
Andrew said, "If we can't one day maybe two days? Or three days? Or four days?"

I just about lost it when he told me #5 today. He said that because every morning I tell him that he is handsome. I never fail to tell him and Trenton once I get them dressed that they are handsome.

Batman

Andrew had so much fun at his Superhero party on Friday night, he was still pretending to be Batman Saturday morning!

Here is Batman and Pepper!

Pepper is a very good cat! She lets Andrew torture her and she takes it like a trooper. Saturday evening Andrew walked into the living room carrying Pepper by her neck. He had both hands around her neck like he was strangling her. Pepper was scared to death. She was very grateful when I rescued her.

Saturday, April 25, 2015

No Sleep


This is really starting to become true again. Yet another total sleepless night. Trenton's sleep is back to being about as bad as it can get. He just got out of a really good three week period....I guess it is time to get totally use to NO sleep and I mean NO sleep. I'm back to just begging for three hours a night. Three hours...that is all I am asking for....just give me three hours Trenton!

...

Friday, April 24, 2015

Superhero Party!

Harsha Cognitive Center hosted a Superhero Party tonight! I am not sure who was more excited...the boys or Mommy! We were all excited because we actually had somewhere to go on a Friday evening where we would not get the crazy stares from people. I had somewhere to take Trenton where he could run and pace and do his thing at!! I had somewhere to take Trenton where he felt safe and where his anxiety would not get the best of him. It felt GREAT!! Thanks so much Harsha for hosting an awesome event for kids with special needs.

 Nana and Grandma Great was here for the day for a visit. They stayed through the evening so Nana could help me chase the boys at Harsha.

Andrew had a great time participating at all of the booths they had.
 He even made a picture frame out of puzzle pieces:)



 It can't be a party for kids with autism without bubbles!!

 Andrew enjoyed the sensory story time!




Thursday, April 23, 2015

Harsha Pictures

Trenton enjoying some smiles in the bathroom with his coach while washing his hands.
The boys had a great time celebrating another peer's birthday this week at Harsha!

 
Andrew enjoying some great one on one with his coach!






This is a great picture of these two. Andrew and his lead coach, Terris.

Funny things Andrew says!

On some nights when Trenton is up all night he is very calm. Other nights, he is very impulsive and wild which is tonight. I can only watch my child go crazy for so long until I have to do something else....which is why I keep posting tonight!

I was sitting here thinking about Andrew and some of the things he has said lately. He cracks me up!!! I just love it! He has such a special gift of being able to talk! It will never get old listening to him.

Today while we were at the library, he walks up to a random woman and said, " I go to church."
The lady flashed him a smile and said, "well good."
Andrew said in a very serious voice, " I go to church. I like church."

The other day when Andrew was having a bowel movement on the toilet, he looked in the toilet and said, "Mommy I made play doh."
Then, the following day when he was having a bowel movement he said, "Mommy I make snakes."
Ever since then if he needs to go to the bathroom and I catch him in time, he will say, "Let's go make snakes."

Andrew told me the other day, "I have two Mommy's"
I said, "No you don't. Who is your other Mommy."
Andrew says, "Mommy with no make up."


Love this! So it is not only Trenton...it must be an autism thing!
LOL

Wednesday, April 22, 2015

Dentist

Andrew had a dentist appointment today with our new dentist. The new dentist and staff made a great first impression.
Andrew did FANTASTIC!! I was so proud of him. Taking Andrew to the dentist and doctor is the complete opposite of Trenton. It is truly night and day!
I was really happy when the dentist reported no cavities! I was very worried because Andrew's baby teeth did not form right and he does not have enamel on them which is why he had to have extensive dental work done last August. However, we got a great report today!

He loved the dental office! He received a football for being a first time guest.

 He also went with me to Wal-Mart. He spotted a Cars umbrella right away....guess who had to have it?

Tuesday, April 21, 2015

Mommy & Pictures

Even though its been mentally and physically rough lately, Trenton made it all better tonight. Once again he reminded me the reasons for why I do what I do...the reasons for why I am awake around the clock with the boys helping them 24/7. He reminded me of why being an autism mom is really special.
Tonight while I was laying in bed with Andrew, Trenton spontaneously ran out of his room and said, "Mommy."
I can't remember the last time I have heard him spontaneously say my name. It was music to my ears!!! Hearing just that one word is such a blessing! God is good! God knew I needed that. We celebrate the small things in our household and our small things are really HUGE!!

Here are a few Fantastic pictures that I have taken lately.

The other day Trenton loved looking at the camera in my phone .While he was looking, I decided to snap a few pictures. Do you like his oreo cookie around his face:)



Love this boy! He has taught me so much about life!
 Before I knew what was taking place, he dumped all of his Oreo cookies on the deck. Then, he made this lovely design.

He really likes all of his Sesame Street friends lately!

Nana made Autism Speaks

I am very proud of my mother. Autism Speaks loved her article and posted it. I am so lucky to have her as my mother and the boys' Nana! She is an amazing advocate for her grandsons and stops at nothing to advocate for them.


https://www.autismspeaks.org/blog/2015/04/21/nanas-love

Sorry

Have you ever got a song stuck in your head and you can't get it out? It drive you nuts, right?
Well, I can't get the image of Trenton out of my head from Saturday. Not the meltdown at the park but the meltdown before he went to bed Saturday evening. It is haunting me and will not go away.

His meltdown was so disturbing. Sad to watch. Gut wrenching. It left me feeling as nauseated as some pregnant women get....only my nauseated feeling was from torment.

What is the most heartbreaking of all, was that in the middle of his meltdown he shouted, "sorry" three times. He was aware of what he was doing but had no control to stop his body. Can you imagine? Can you imagine being trapped in a body where you could not communicate? Try it...I dare you! Try going one whole day without talking and see what you feel like.

Trenton's body was not letting him relax and he was so mad that his body wasn't relaxing because he was so tired. He was beyond frustrated so his only way of communicating his frustrations was through a meltdown.....which is crying, screaming, hitting himself, hitting others, kicking others, kicking anything that is in his way. He had no control of his actions.

Carly Fleischmann described that feeling as ants crawling all over her body with her legs on fire. This is what she says it would feel like to us. Can you imagine? Just picture yourself with millions of ants crawling on you and they wont' get off while your legs are on fire. How would you feel? Would you get frustrated? Would you cry? Would you scream? Would you hit?

Now picture your child having that feeling? What would you do? You would have the instant parental instinct of wanting to help your child, am I right? You would brush all the ants off. You would put out the fire. Then you would hug and kiss your child and let them know that it is going to be ok.

Well, I can't do that. I can't make that feeling go away for Trenton. I can't hug him because he won't let me.  He may let me kiss him but its nothing like a neurotypical child kiss because he pushed me away right away.

I have a child with such severe sensory needs that I can't help him. It is one of the most painful things to go through. No one wants to feel helpless when it comes to their children. I and many other parents of children with severe autism feel helpless. It doesn't matter if we have accepted our child's life and our new life, we still feel helpless and alone. We are tortured with pain everyday but we become real good at hiding our pain to others.

Monday, April 20, 2015

Nana's Love

(Many of my readers are grandmothers. This is a guest post from my mother, the boys' Nana.)

My daughter asked me to write an article for  her blog in honor of Autism Awareness Month.   My perspective is going to be from a "Nana's view". 

Anyone that knows me knows how much I have always looked forward to being a grandma!  All my kids said they actually felt sorry for the first one of them that made me one.  I was the one that was always grabbing the babies at church, work, wherever I was when I spotted a baby I was there! I went to garage sales and had a room full of clothes, toys, and all the "necessities" it takes these days to care for an infant before one was even a glimmer in their parent's eyes! I remember a former boss of mine saying once, "If there is a baby within 10 feet of Aleta she will have it in her arms in a heartbeat." Yes, you could say I love babies!!!!

Needless to say, when my daughter announced she was pregnant I was on Cloud 9!!  I prayed that my first grandchild would be healthy, of course, but NEVER once, did I even think about autism! I was thinking along the lines of a heart defect, cancer, etc...physical things.  I don't remember even thinking about having a disabled grandchild.  Was it because I thought I was immune from something like that happening to my family?  I would like to think not, I just didn't think about it at all!!!  That is to my shame.

The day Trenton made his appearance in the world, I was just about as happy as anyone could be on this earth! My heart was full! A lot has transpired for my family since that time, which I won't get into, because if you are reading this, of course, you already know how things turned out.. you already know the "rest of the story".  I have thought back many times to those prayers that were lifted up. I have even tortured myself with thoughts that God was trying to teach me a lesson. Of course, I know this isn't the case. But I have learned a lot about prayer since Trenton's birth. As a matter of fact, I have learned a lot of things about life in general.....how our life, as we know it, can change in the twinkling of an eye..how fragile life really is...and that this life is full of laughter and tears, joy and pain, and in the midst of pain you can always..always find things to be thankful for!  God never promised this life wouldn't have storms, only that He would be there in the midst of them to help us weather them!

I still remember the day Trenton received his diagnosis.  I was keeping Andrew so I didn't get to go with her and Tim for support. I got the "news" via a phone call. Her words still haunt me...."Mom, Trenton received the diagnosis of autism today." Her words were few, her voice was flat, and I can still hear those words in my brain!!!   I dropped to my knees and sobbed. I remember Brian was there with me that day and he said, "Mom, we already knew it." I did............ but  hearing those words changed my whole world and it has NEVER been the same. I didn't stop crying for at least a month..every single day..the tears came..sometimes while I was simply folding laundry........in the middle of the night....while cooking.......while rocking Trenton, Andrew, or Lincoln to sleep during the day.  I began a whole new relationship with God.  My prayers were no longer just breathed out at night to Him before falling asleep.  Most of the time, in the beginning, I asked God..WHY?? 

One day during this time I had a dr appointment.  It was just a recheck, but when I went in and the nurse took my blood pressure...wellllll, let's just say it wasn't good!  It was through the roof.....When the nurse practitioner came in she retook it and told me I could not have blood pressure that high and something had to be changed to get it down.  I told her it was simply due to stress, and unfortunately, that was one thing even she couldn't do anything about.  I remember telling her about the turn of events in my life, Trenton's recent diagnosis, etc. Of course, I started crying so much I couldn't talk. I'm sure when I left that office that day those in the waiting room probably thought I had received a "death sentence".  In a way, I felt I had already received it.   She put me on an anti-depressant and told me I simply had to get things under control. I went home, put those pills in the bathroom cabinet, prayed about things, thought about my daughter and how strong she was, and figured if God and me couldn't do this without pills, then something was definitely not right in my life! I threw them away!!!!!
 
  I began to avoid going to Wal-Mart or the grocery store because I was afraid of running into someone that would ask me about Trenton. This happened one day and I stood in the middle of Wal-Mart talking to a friend and I started talking and crying so much I had to leave.  But, probably the one place that really affected me the most was when I went to church. Yes, church!  Of all places, why did going to church services bring me to tears.  Our poor preacher probably stared to think I hated going to church so much I cried!!!!  Did I expect the Lord should have carried me through the rest of my life unscathed while others around me were suffering trials? I hope not.  I still don't know why I always cried while at church. Maybe it is the one place I felt the love of God the most; and desired that "peace that passeth all understanding" and I wasn't feeling it.  I just don't know.  I still seek that peace. I am not sure I will ever receive it in this life. I hope so. HOPE..it really is the "anchor of the soul."  It keeps me getting up in the morning. 

I often think over the blessings I have enjoyed in my life.  Things I didn't really even think about being "blessings" at the time. Thus, I probably didn't thank God enough for them if I didn't recognize them as blessings at the time.  I would like to think I was thankful for things like health, healthy children, a warm home, enough food to eat,... you get the picture.... the "things" we often breathe out our thankfulness for to God.  Autism has taught me that there are many, many more things we should thank God for that I, admittedly, didn't even think about until autism knocked on our door! 

Simple things like......taking my kids for an "outing". I remember one time when my kids were small picking them up from school with bags packed in the car and we headed to Indianapolis for the weekend to the Children's Museum. We had kept it a secret and they were so surprised and happy!!!  Did I even consider this a blessing?  Probably not!  This is impossible for my daughter and her family. Trenton could not tolerate being in a museum. Let's just say it would be a nightmare to attempt this. 
Simple things like......going to McDonalds!  How many consider this a blessing?  I know I didn't because I was always trying to get my kids to eat somewhere else..some place perhaps a little more  healthy!!!
 
Simple things like.....a T-ball game, Little League, basketball....all the extra-curricular activities neurotypical,  healthy kids get to enjoy!
 
Simple things like...just a simple "hug" from your grandchild. .. any gesture of love from them. If you never know what it is like to be hit by your grandchild and pushed away when you try to show them affection and love, then you are fortunate!
 
Simple things like....going to church!  Yes, that's right.....going to church!  Yes, perhaps we all get an "A" for considering this a blessing. But, my daughter sometimes can't even go to church. Sometimes it may be because she has been up all night with Trenton, or he is having an exceptionally bad day with his sensories and he can't tolerate the people, noise, etc. Thus, she has to scoop him up screaming and leave early.
One day after this happening I cried all the way home and said to my husband, "Why would God give a child to someone that keeps them from worshiping Him, the Creator?
and this thought.........I want and have prayed many times that all my children and grandchildren will "walk in faith" and how can Trenton do this and know God if  he can't even speak, or understand this world he lives in; let alone a Higher being, that there is a Heaven to be gained. I do know this....my grandchild's life and purpose on this earth is NO less than that of any other childs.  He will be whole one day and walk and talk with Jesus and he can run all over that place and No one...No one will be tugging on his arm to stay with them. He will be FREE at last!  
Until that time, we must pray for wisdom and understanding on how to best meet Trenton's ever demanding needs. He is a precious gift from God and I love him unconditionally!!! 

I have never considered myself to be a jealous person.  I have always felt we should be content with what we have...bloom where we are planted....you get my drift.  I have to admit that I AM A JEALOUS person anymore.  I want what I see others having....Normal grandchildren they can enjoy being with. I envy their trips, vacations, and  yes, even taking them to McDonalds!!!! I see children Trenton's age everywhere and they are playing T-ball, registering for Kindergarten, talking to their "Nana".  Recently, I saw a friend and she grabbed me by the arm and tugged me in the direction of her granddaughter to "show her off"!  and yes, I was jealous of her!!  Before we left  her granddaughter (who is a darling, cutie patootie by the way)  said, "Bye, Grandma..I love you!"  Oh my gosh!  I almost lost it!!!!  I would move heaven and earth to hear this from Trenton, spontaneously!!  Will I ever?  I don't know. But I have HOPE!!!  I am working on the jealousy issue. Perhaps it isn't real jealousy. I would like to think it is just reminders of what I am and will miss in the future with my precious grandchild.
 .........

This was the scene in my living room last Saturday night. Angie and the boys had stayed with us over the weekend for the Walk for Autism in our hometown.  Trenton was having an exceptionally bad day. It was about eight o'clock that evening and he was beyond tired, but his body was simply not letting him "settle down" for sleep.  This becomes frustrating for him and when he has had enough he gets very upset and begins to meltdown....Jim, myself, Angie and Andrew were all in the room. Right in the middle of his extreme "meltdown", he stopped for a few seconds, and said..."sorry..sorry".. (plain as anyone could say it) and then proceeded to scream, hit himself,and cry!!  He FINALLY went to sleep about 30 minutes later.  It was hellish to witness!  He is getting old enough to understand more things. He knows his behavior is unacceptable, but he can not  help it!!!  I know this may be hard for the reader to understand if you haven't read the many books, or articles on autism that my daughter and I have.  This writer is simply not good enough to bring across to the reader the pain and anguish this brings!  It is nothing short of torture!  I told Trenton Sunday morning that I wish Nana was the one that was living in his body, but then, if that were the case, he wouldn't even be here!!!! 

I don't know what the future holds for Trenton, or any of my grandchildren for that matter. No one does but God! If you have healthy, normal grandchildren, please hold them tight, thank God for them, and keep our family in your prayers!  I don't see Trenton with my eyes..I see him with my heart and my love for him is as much as anyone could have for theirs.  I once expressed to a good friend that I just couldn't get people to understand what "autism" was like. I said, "no one gets it!".  I will never forget his reply, "Aleta, would you want them to?"  The answer is NO..absolutely not!!!  I would never wish autism and the grief it brings to families on anyone!!!!  (this individual, by the way, also has an autistic son)  There are a lot of things in this life that one has to experience themselves to understand. Autism is one of them.

Nana and Trenton when he was one day old.

Nana and Trenton now

 Nana and Andrew when he was one day old.
 Nana and Andrew now








    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!