Friday, November 29, 2013

Mommy Therapy Video

Here is the video from last weekend of Trenton having "Mommy Therapy".


Awesome Day!!!!

Trenton has had two extremely good days in a row!!!! I LOVE IT!!!!!!!!

He has been adjusting to the past few days really well especially since we are off schedule.  We went to my cousin's house for one hour and a half on Thanksgiving and he handled that time well. In fact when he had enough of being around people, he took them by the hand and directed them where to go......cute but sad! So much better than a huge meltdown.

Today we had speech and occupational therapy and did phenomenal!! He requested items and said the words spontaneously!! He sat for 15 min in OT without being confined. This is amazing!!!!! He has made me so happy the last few days!  Plus, he came up to me tonight and said "hep me"!!!!!!!!!! WOW!!!!!!!!!!!!!! It's been awhile since he has done this. It melted my heart!!!!! I pray he can do this all the time! I can't even begin to explain how beautiful his voice is!

Falling asleep has been taking hours and hours but we are having good days.

Keep up the hard work Trenton!! It will pay off soon!! I love you Bubba!

He loves his animals!

 We have been doing some painting with a brush and not our fingers the past few days.


Wednesday, November 27, 2013

A Mother's Wish

A Mother's Wish
The world rejoices over a beautiful child,
Bright healthy, fun and free.
A mother's heart bursts with love,
For she can clearly see....

A growing babe learning many things,
Changing everyday.
Rejoicing in the world around,
Through music, word and play.

Sometimes the world is not so kind,
And a child may find it harder,
To conquer all those special skills,
That others seem to master.

A mother's heart still bursts with love,
And hope that they'll be free,
To enjoy their life in this world,
And be the best that they can be.


Lisa Driver 2004 

Tuesday was a better day!

We had a better day on Tuesday. No episodes like Monday night, thank goodness!!!

We did have two new things on our agenda yesterday. First, Andrew went to a babysitter yesterday morning. He will continue to go to a babysitter one day a week in the morning. This is to help Andrew with his social skills. Also, it will give him an opportunity to play with other toddlers his age. It is obvious that Trenton is not a role model in that area. He did good for the first time. Who knows, maybe we will work our way up to a few days a week! Secondly, I have hired a young high school student to come do structure play with Trenton on Tuesday after she gets out of school. I can not do structure play with Trenton every second of my life. I also have Andrew that I need to raise. If Trenton is not doing structure play he is fussy, throwing toys around, and destroying the house. Therefore, as long as this nice young lady wants to do this, she will come and play with Trenton for 30-60 minutes on Tuesdays. Yesterday was her first day and she did fantastic! I guided her on how to play with him and she did great. Remind you, it is not typical 3 year old play. He is sitting in his desk chair doing structure play. If I ever have time to get my video uploaded from Saturday, you will see what I am talking about.

Here are a few pictures to humor you...

I was trying to do laundry but Trenton thought my socks and his socks needs to be lined up on top of a blanket.


Andrew what in the world are you doing?

Trenton you will get stuck!
 Trenton does it, Andrew has to try too!
 He still loves the oven.






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Tuesday, November 26, 2013

In case you are wondering why I refer to Trenton's episodes as if he had ants,fire, and knives on his body. Well, a girl with severe autism described to her father that that is what it felt like. Her episodes were identical to Trenton's.

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Monday, November 25, 2013

From Great to Hell on Earth in less than 7 hours

I have no idea how this post is going to go so just bare with me. It might get ugly tonight. If you are easily offended then maybe you should stop reading after this line. My nerves are gone, my heart is about to pound out of my chest, I have been mentally abused for the last  3 1/2 hours, my body is beat up, I am on the verge of tears, and just the thought of the simplest holiday cheer is enough to make me VOMIT! Our day started off great after a bad weekend but the day ended up like we were living Hell on Earth.

This morning after school we went to see Jessica and Emily for some therapy at Olney. After his speech session with Jessica I was living on cloud nine! Trenton had the most amazing session with her AND...........he spontaneously said two words! He requested and said "want elephant"!!! He has never verbally said "want" and to put it with another word!!! THIS IS AMAZING!!!!!!!!!!!!!! It made my day and I think it made Jessica's too!

During occupational therapy, he sat for Emily for approximately 10-12 minutes and worked for her!! He was not confined to a seat!! This is great!!! Trenton use to always have to be confined in a seat but lately he will work unconfined for awhile! Good Job Trenton!

Later in the day we have ABA with Alicia. Alicia tried to get him over and over to say "want goat." He simply could not do it this afternoon. He was very quiet and used very little sounds with her. Nonetheless, he said it this morning and we will take that!

Now, Hell on Earth entered into the house this evening. Trenton was trying to relax and go to sleep in his swing. In the matter of seconds he is out of his swing, screaming a scream I have never heard out of him. Nothing can remotely describe the sound of the scream coming from him. In the middle of the screams, he was making sounds I have never heard before. He was trying to talk. He was trying to talk!!! In his mind he was telling me something and he was wondering why I wasn't helping him. That enough was about to send me into cardiac arrest but what came next....well....can't believe I am still standing. Trenton just went nuts! I knew he was having some type of body feeling. More than likely, the ant or fire feeling. I picked him up and squeezed him as tight as I could. I touched one of his legs and his body stiffened up and the blood curdling scream continued forever.  He acted like my touch killed him. When I touched his legs, it probably felt like knives stabbing his body. I texted my mom, she came to my house to take care of Andrew. I picked Trenton up and put him in the car to see if that would help him. It was so bad, I didn't even take time to put on a jacket or shoes in the thirty degree weather.
Once in the car driving, the screams continued. About a half mile down the road Trenton takes his hand and fist and starts hitting himself in the face and the legs. I just kept driving in shock! The screams continued as well as the self injurious behavior. Finally after 20 minutes, it ceased.

I realize reading this does not even come close to living it. There is simply no way to describe the sound,the noises, and the scream that was coming from him. There is simply no way to describe to the majority of my readers what it feels like to witness your child in such severe pain. There is simply no way to describe what it feels like to watch your child suffer from a mental illness. There is simply no way to describe what it feels like to watch your child engage in self injurious behavior. There is no way we can come close to knowing what it is like to be Trenton. If you want to come close to knowing what it feels like to be Trenton and I then I suggest you buy a thousand ants and poor them over your loved ones body, take about 20 knives and stab them in the legs, light their legs on fire, turn on 20 different kinds of music on full blast, take away their ability to talk, and take away your ability to help them because the ants on their body are on there to stay for awhile, the knives aren't moving, the flames won't go out, the music won't turn off, and remember....they can't talk. What would you feel like? What would your loved one feel like?......told you this post might get ugly!...why wouldn't it......I spend my days living Hell on Earth sometimes....can't expect me to be so cheery all the time. This is life with autism. This is raising a child with a mental illness. This is suffering from guilt for bringing a child into this world that suffers. This is educating you on autism!!



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Saturday, November 23, 2013

Weekend off on the wrong foot.

This weekend got started off on the wrong foot! As soon as I brag about Trenton's good phase of sleeping, we entered into the dreaded bad phase. UGH!!

He was awake at 12:30 AM last night and did not go back to sleep til 4:40 AM. He was wide awake and ready to go at 12:30. For the first few hours he walked around the house moving small toys around like he normally does. The last few hours he tried to go to sleep but his body was not letting him. Or should I say his brain was not letting him. He got so frustrated. It is very difficult to watch your child scream and cry out because they are so tired but their body is going 110 mph with who knows what kind of feeling crawling all over their body. His body and mind finally gave up the fight at 4:40 but only to awake at 6:10 AM crying. Trenton continued to cry and have small tantrums and meltdowns until roughly 9:00 AM. He was tired but once again the mind and body would not let him sleep. During this whole ordeal he tried and tried to talk. He babbled very loudly with huge tears rolling down his face. He looked my way every once in awhile and his eyes spoke a thousand words when they glanced at me. I heard his eyes say, "Mom help me. Why can't I just fall asleep like most people? Mommy please do something? I don't want to feel like this anymore." Unfortunately, Mommy does everything she can but this is one issue I haven't found the solution to. It is 6:00 PM as I type this and he is asleep. He is back to sleeping whenever his body will let him. His history has proven that during this stage he will wake up between 11 &12 and if he is lucky, he will fall back to sleep around 4 AM and up for the day around 6 AM. Mommy normally gets to sleep from 10-11 and 4-6. What fun!

This one small issue of sleep is just ONE minor example and reason why we can't do anything, why we can't travel, why we have no energy for the holidays, why we live day by day and never get to do anything or plan anything. Sleep is crucial folks! Watching your child suffer every minute of the day sucks every ounce of life out of you! I appreciate those of you who realize our struggles and support of us everyday. We wouldn't have the energy to live this life if it wasn't for your support.

On the contrary, we did have an excellent 4 hours today. That is when I got out the camera to document a few photos.

First, Mommy had a small art project ready to go for the boys. We painted some Thanksgiving pictures. Trenton loves this! It is a good sensory break too! Andrew hated it.



 Trenton's pictures.

 
 Andrew's picture.
 
Trenton had a great therapy session with Mommy! The best we have ever had. I hope to post a quick video on our session.




 We used our chart. He chose to work for Skittles today.
 Daddy hung a mirror in his bedroom so he can look at himself in the mirror and play. HE LOVES IT!
 I wish I knew what he was thinking when he was playing.
This was his audience. He lined them up and kept on glancing at them for approval during his play. It was very cute.



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Friday, November 22, 2013

Therapy

Trenton has had a great week in therapy. He was excited to be back at Olney with  Emily and Jill. We haven't been there for over a week due to illness and they had to cancel on Monday. Jill said he did great participating and naming objects. In fact, he did not want to leave Jill's room when therapy was done. Her and I were talking and he ran  back to her room. He loves his therapy.

Ms. Jenny said he cried at school today. Makes Mommy sad hearing that. However, when he was working one on one with his teacher, he named his animals and other objects and symbols as well. It appears he had a good day trying to use his words! Way to go Trenton!!!

I am very thankful to have such a wonderful, amazing group of therapist and an amazing educational team working with Trenton! Trenton is a very lucky boy! Thanks to each and every one of you for loving and caring for Trenton. I know our hard work will pay off in the long run.



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Don't Forget...




Autism

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Quick Update

Quick Update-Trenton sleeping has been perfect for almost two weeks now! Yes, he had  one bad night last week but for almost two weeks he has been sleeping through the night!!!!!! We are in a good phase of sleeping. THANKS GOODNESS!!!! I just wish I knew how long it will last!

Nana and I took Trenton and Andrew to see Babaloo on Thursday. Babaloo is a one man musical comedy act for kids. Trenton was able to watch him during school on Thursday and Ms. Jenny said he loved it. I decided to take him back that night. When Babaloo started Trenton reached for his headphones. He looked around and put them down. I think he noticed that the other kids didn't have any so he didn't want them. He sat on my lap fairly well for 20 min. After 20 min, he reached down and put his headphones on. He was a big boy for 20 min and I was very proud of him!!! After a few minutes with the headphones on he turned and made his "noise" that tells me he has had enough. It's a noise that speaks a thousand words. It says, "Get me out of here Mommy before my body goes in a complete meltdown because I have had enough sensory overload." Mommy got up with him and we left. However, he made it through the first half hour and I am very very proud of him!


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Wednesday, November 20, 2013

Bah Humbug

Trenton is feeling much better. His sad moments have started up again. At first, I didn't think we were going to make it therapy on time today between his cries and screams that were coming from him. He gets so frustrated not understanding this world!

 I am just about at my wit's end folks! Everywhere I look I see Christmas decorations, Thanksgiving decorations, holiday music everywhere...UGH! I hate to be a bah humbug but I am! I admit it!!!!  Trenton has his first Christmas program in a few weeks and his class has been practicing their Christmas songs. It breaks my heart.....HE CAN'T TALK!!!!!!! My child's class is singing songs and he can't talk. Poor Trenton! I'd give ANYTHING if he could get up there with his class and sing!

Who the heck cares about holiday time when autism took my child away from me! I suffer that pain every day. That pain does not get any better especially when you spend your WHOLE day fighting the huge battle against autism.  The battle of trying to talk and learn receptive language. The battle of trying to control uncontrollable behavior. The battle of trying to fight off sensory processing issues every minute. Do I need to say more???? The list of battles with autism goes on and on and on and on and on and on and on and on..............
Trenton's battles are at the list of my worries, not the holidays!

This bah humbug can't wait til the holiday season is OVER!!!!!!!





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On That Day



 On That Day

Angels may be distant
On the day that it begun
The day you find your child
Is different to everyone
At first it all seems hopeless
You haven't got a clue
What is it God has sent your way?
What ever did you do?
Your life is shattered endlessly
There's blame and there is fear
There's denial and there is bitterness
That will last for years and years
Some of us, we make it
Some of us, we fall apart
And there are no words of comfort
To heal our wounded hearts
But for this we have been chosen
To nurture our special child
And soon we come to realise
Our little angels will help us smile



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Swing & Per

Andrew thought he needed to swing to relax before bed tonight.


 Andrew is officially broke of his "per" (pacifier) during the day!!! A week or so ago Andrew was wanting his per after breakfast. Mommy got down on the floor with Andrew and asked, "Andrew do you need that per? Look at Trenton. He does not have a per. Does Andrew need a per?"
Andrew looked over at Trenton, looked at me. He took his per out of his mouth and handed it to me!!!
We only get per at nap time and bed time now!

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Tuesday, November 19, 2013

Oven

One of Trenton's favorite things to do lately is play in front of the oven. He loves to look at his reflection in the oven! I love to watch him do it!! Makes me smile to see him so happy.










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Not 100% Yet

Trenton's stomach flu is over. However, he still does not feel like his usual self. His energy level is very low. As we all know this is very unlike Trenton. He will  get spurts where he will do puzzles and walk around the house like a lost puppy. The next minute he is laying on the floor or couch. He has not thrown up or had temperature since Saturday.

On Monday morning I am trying to figure out if he feels like going to school. I am asking him if he feels good or if something hurts. I am doing the sign language for "hurt". In spite of all that, nothing is registering with him. So here I am with a nonverbal child trying to take a guess if he feels like school or not. I take out his iPad and show him a few choices that is on his schedule. I show him a picture of our house, a picture of Nana's house. I ask him if he wants to stay home and play or if he wants to go to Nana's and play. Trenton takes the iPad and scrolls down on his choices and hits the picture of Ms. Jenny! Ms. Jenny is the paraprofessional in Trenton's classroom. She meets me at the door every morning when I drop Trenton off and she walks him to their class.  So he hits her picture and looks at me and walks to the front door!!!!!!  This is a huge accomplishment for us!!!! This told me that he wanted to go to school and see Ms. Jenny!! Praise the Lord!!! Unfortunately, we were not successful on the iPad the rest of the day nor this morning. However, every once in a while we are successful and I rejoice in those moments! This moment also told me how much Trenton loves his educational team at school!!!! That is extremely important to me!


Trenton did not feel like school on Monday and he did not feel like it this morning. In spite of not feeling good, that is his routine and Trenton has to stick with it. His mind does not think like ours. He does not know how to just relax when he does not feel good. He has to follow his routine! The mind of person with autism is a mystery. Their routine is their routine every day and once it is disturbed, it is very very hard on them!!! EXTREMELY HARD!!!!!!!!! Another way to describe their mind is this....Those with autism are very literal thinkers. While ordinary people seem to love using idioms, metaphors and figurative speech, whether to aid communication or simply to make life more interesting, for people with autism they simply make no sense.
Sometimes children with autism can take things very seriously and have trouble accepting that a phrase may say one thing yet mean something completely different. For example, if you say "It's raining cats and dogs.". They think it seriously is. Routine and speech has to be straight forward, simple, and never disturbed!


Even though he has low energy, he still wants some "Mommy Therapy"

 So did Andrew.
 We played at the table too.
 He fell asleep on the couch!! He has not struggled to fall asleep the past few nights....Thank Goodness!!





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