Wednesday, July 31, 2013

Elmo & Grover

At the end of one of Trenton's therapy sessions in our home, his therapist and I were working with "taking turns" with Trenton. Margaret had a ball and tossed it to Trenton. Trenton would then toss to me (with LOTS of prompting). I would toss the ball back to Trenton and then he tossed it back to Margaret. We did this several times. All of a sudden, Trenton takes off running to his room. He came walking back out with a small basketball and Elmo. He laid Elmo on the floor and placed the ball on him just like this...
 He ran back to his room and brought out Grover and another ball. He placed Grover next to Elmo.
I guess he thought Grover and Elmo needed to play too!

Overall, he did just okay in therapy today. He have several fussy moments in therapy but they never led to a meltdown! Trenton was very quiet in therapy with limited babbling today.

Throughout the day, Trenton was never content with what I gave him to eat. I know he had something in his mind all day that he wanted to eat but  I failed him at trying to figure it out. Several times today he took me by my hand into the kitchen and threw my hand to the cabinet that contains our plates and bowls. Every time I would get a plate or bowl down and place food on it but it was never what he wanted. This is torture for both Trenton and I. I can't even imagine being him and wanting something but not able to express it. There have been times I have made 5 meals a day just trying to figure out what he wants to eat. Today was one of those days. I can show Trenton pictures of food and I ask him if that is what he wants but he does not understand that yet. I pray I can figure it out tomorrow.

A week ago I was dealing with the same issue but that day I finally figured out what he wanted. The third thing I made that day was spaghetti. You should have seen the look on his face when he saw that it was spaghetti! It was priceless!!! It took three times but I figured it out that day.


A Letter From The Billingsley's about Miracle Treat Day



July 25,2013


We are writing to tell you about an exciting event we’re holding this summer: Miracle Treat Day, which will take place on Thursday, August 8. During this one day event, we’ll be donating $2 per Blizzard® Treat sold to Children’s Miracle Network (CMN) .  And we will donate an additional $2* to help a the family of a local child named Trenton Conrad.

Trenton is the son of Tim and Angie Conrad of Flora.   Trenton was diagnosed with Autism last year at the age of two.  His doctors have prescribed 40 hours of therapy a week which is critical to his development. His family must cover most of the cost of this expensive treatment and all travel and incidental costs.  Trenton's family is doing everything they can and it is difficult for them right now.  Anything we can do to help and show them support will be greatly appreciated.

As you may already know, CMN Hospitals is a non-profit organization dedicated to saving and improving the lives of children by raising funds for children’s hospitals across North America.  Each year the 170 CMN Hospitals provide the finest medical care, life-saving research and preventative education to help millions of kids overcome diseases and injuries of every kind.

I’m hoping that you will support our efforts to make a difference. Please mark your calendars for Miracle Treat Day 2013 on Thursday, August 8. If you would like to purchase Blizzard Treats for your employees and help us increase our donation, I’ve attached a preorder form so you can avoid any potential lines. Please fax or call in your order by 4pm on August 7th.

We are also selling Blizzard Treat coupons. Rather than picking up the product on Miracle Treat Day, you can hand the coupons out to your employees to redeem for a 12 oz.  or larger Blizzard Treat at a time and date that’s convenient to them, and of course, the contribution will go toward our Miracle Treat Day donation. This is a great option for larger orders.

Thank you in advance for helping to improve and save the lives of children in our community!

Sincerely,


David & Melissa Billingsley
Dairy Queen
201 W. North Ave.
Flora, IL.  62839
618-662-8547

Tuesday, July 30, 2013

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 realize
Our little angels will help us smile

A little better

Today was a little better. Trenton has still been very moody. However, he goes through phases with this too. He did not participate very well in his first session of therapy. Surprisingly, he did not do very good for Heather. He always does good for Heather. She actually quit a few minutes early due to his fussiness.

Clonidine failed us last night. Trenton had his worst night of sleeping since on the medicine.  Andrew continued to sleep awful. At one point in the night I hear Andrew saying in the monitor, "All done". This was at midnight. I guess he was ALL DONE with sleeping at midnight. I told him he is reminding me of his brother. I am praying both boys sleep good tonight!

Monday, July 29, 2013

Did today really happen??

We all like to wake up to a good day right?? We like to wake up to things going our way. Would you like to wake up and really want something and have no way of communicating it?? There might be something in your head that you recall one time and you REALLY want that but how do you express that to the person you trust the most whether that is you mom, spouse, etc? So things might not be going your way but you find peace stepping out on your front porch enjoying the birds chirping or watching the sun rise over a cup of coffee. That will put you in a better mood right!

What does a child do that does not understand anything? What do they do if they really want something, can't communicate it, and only has the capability of understanding the very smallest minute things in this life????  What does a child do with autism???? I have the answer. They cry for hours upon hours. They scream for hours upon hours. They damage items, kick, hit others away for hours upon hours.

This morning, Trenton had his first tears within five minutes of waking up. Andrew had his first tears, due to Trenton, within minutes of waking up. Mommy had her first tears by 8:00 AM. Mommy had a pounding headache by 8:15 AM. What was the reason??? Wish I knew? If Trenton could tell me, everything would have been better.

Today was the most frightened I have ever seen Andrew. He was deathly afraid of his brother. Andrew could not even come close to Trenton or Trenton was coming after him ready for a fight. If Mommy even touched Andrew, Trenton screams became even more louder. The screams and tears from today has left me numb.

We survived the very early morning hours and traveled to therapy. His speech therapist said he participated but had some very moody patches. No surprise! No spontaneous words but he participated. His occupational therapist said today was the best he has done for her yet! Awesome!! She swears he read the word "ice cream" today. She would not be surprised and I would not either. This is one of those freakishly smart traits of children with autism.

I left Olney in high hopes that the rest of our day would be good. I was wrong. Alicia, ABA therapist, came to our house at noon. Listening to this session left me feeling complete anger! Angry at AUTISM!! I was left feeling a state of shock. Did that session really just happen??? I listened to my baby not only cry and scream but the tone in his cry and screams is enough to take the hairs right off your arms. I would not wish it upon my worst enemy.

ABA is a very forceful therapy and she has started to push Trenton very hard. Trenton knows he can't do it so he has a full blown meltdown in a strapped chair and he is not allowed out until after the session and after he tries to complete the task for the whole time she is working with him.  I can't watch this. I have to remove myself from the room and listening close by.  The task that pushed me over my edge today was over a "crab". Trenton had to identify the crab out of a group of sea animals. Trenton identified this. Next, she asked him to say "crab". Through his tears, through his screams, through his kicks he said the "C" sound. Of course she wanted more than just the "C" sound. She kept asking him to say the word. Once again.....through the tears, screams, kicks, he babbled " I DI". I know in my heart, he was trying to say " I did".  Nothing could have prepared me for that moment. It was enough to do me in for the day. Can you imagine!!! Can you imagine having someone in your face asking you to do something that you either can't do or you think you have already done it. ( they say sometimes children with autism babble, they truly believe they are talking.) Can you imagine??? In your head you said Crab but what came out was "c" and that was  not good enough!!!! Unfortunately, this is tough love therapy and he has to have this therapy.

I guess since I was already living in "hell" today I thought I would torture myself even more. I asked her what she thought of Trenton's prognosis in life and where he was on the spectrum. I did not get the response I wanted to hear.


She is an amazing therapist! She always leaves me with some great information. She has many years of experience with children with autism and I take what she says to heart and really trust her. We have only worked with her for two months but she is AMAZING!!

After she left, I grabbed Trenton, and we had a long talk with God. Like always, after I talked to him, I feel better!

After a day like this, and I could tell even more details but this post would be long enough for its own book, it would be nice to sit down and relax and talk to your partner about the day. However, when a tragedy hits a family like it has ours, it either makes you stronger or pulls your apart. You can't talk about the tragedy or you are left taking everything out on the person you share your life with. One spouse handles things one way and the other handles things the complete opposite. All of this does not help the situation.  What do you do????? Put all of your cares to the good Lord!! He will help in all areas!

Trenton did have a moment where he had lots of fun with his stuffed animals.




Sunday, July 28, 2013

The below post is some very simple basic information on Autism. I know I have several new readers and wanted to share some basic information that might give you an insight that you can understand.


Autism
A
utism spectrum disorder (ASD) is a range of complex neurodevelopment disorders, characterized by social impairments, communication difficulties, and restricted, repetitive, and stereotyped patterns of behavior. May children and adults with autism suffer from sensory processing disorder.
Please visit www.autismspeaks.org and www.autism-society.org for more information


Social Impairments

  •   Fail to respond to their names and often avoid eye contact with other people
  •     Difficulty interpreting what others are thinking or feeling because they can’t understand social cues, such as tone of voice or facial expressions, and don’t watch other people’s faces for clues about appropriate behavior
  •     Lack empathy 
  •     Do not engage in play with other children, prefer to be by themselves

Communication Difficulties

  •       Severe receptive and expressive language delay
  •   Most remain nonverbal but some learn to speak
  •    Most may use speech in unusual ways. Some have difficulty combining words into meaningful sentences. They may speak only single words or repeat the same phrase over and over.
  •     Inability to understand body language, tone of voice and expressions that aren’t meant to be taken literally
  •    May not exhibit typical body language. Facial expressions, movements and gestures may not match what they are saying. Their tone of voice may fail to reflect their feelings. Some use a high-pitched sing-song or a flat, robot-like voice.
  •     Unable to tell parent if he/she is hungry/ thirsty/ tired



Restrictive & Repetitive Behaviors

  •    Common repetitive behaviors include hand-flapping, rocking, jumping and twirling, arranging and rearranging objects, and repeating sounds, words, or phrases
  •   Many children and adults with autism need and demand extreme consistency in their environment and daily routine. Slight changes can be extremely stressful and lead to outbursts

Sensory Processing Problems

  •    May over-respond to sensation and find clothing, physical contact, light, sound, food, or other sensory input to be unbearable. Another might under-respond and show little or no reaction to stimulation, even pain or extreme hot and cold
  •    Many do not feel their body in space 
  •    Unable to bathe due to sensory issue with water
  •       Unable to eat due to issue with the way food feels in their mouth
  •    Many have to wear special weighted clothing in order to function

Behavior

  •    Often only able to sleep for short periods at a time
  • Child will cry, kick, scream, hit, and bite if needs are not met. Child does not understand or know how  to stop this behavior and will continue for

Andrew Update

Update on Andrew

He has been a HORRIBLE sleeper the past week. I have no idea what is wrong with him. He has been very fussy the past two weeks. Mommy lost her patience with him a few times. I told him the other day that I knew he was a "glass child" but he had to be good because I can't handle anything else. He looked at me the whole time I was getting on to him and says..."ok"

He talks up a storm and it is so cute! I love to hear that precious gift from God......speech!!!
When he wants his pacifier and can't find it he walks around the house saying "per???" When he finds his pacifier he gets very excited! He starts running in place shouting "PER!!!!"

When he watches Barney he wants Elmo on. When he watches Elmo, he wants Barney on. He is a hard man to please already!!

If he does not want something he will tell you No 100 times until you give in and don't do whatever it is that he is saying No to.

When Trenton was lining up his little people figurines the other day, Andrew grabs the Sesame Street figurines and starts lining them up. When Trenton lays on the floor to "stim", Andrew lays on the floor and pretends to "stim". He LOVES his big brother and wants to be just like him!!!!!!!!!!!!

Quick Update On Trenton

The past three days have been a whirlwind of emotions with Trenton. He will be great for awhile and then in the snap of a finger, he is very upset. He will be upset for awhile and then in the snap of another finger he is fine again. Trenton has been known to have many days like this.

He has done some amazing things the past three days. For example, at Grandma Greats on Friday he said "Fi" when he saw her fiddle magnet on her fridge. Then he said "tel" when he saw her magnet of a telephone.

He ran and gave me a hug and a spontaneous kiss today! I loved it!!!!

On Saturday he had some issues with needing some weight on his body. This comes and goes with Trenton. At this particular time in his life, he does not like the weighted vest. Instead, he thrives with weight around his neck, stomach, and legs. Saturday afternoon, he knew he needed the weight on his legs so he laid on the couch, pulled a blanket on him, and motioned for me to bring him his weighted lap pad. I was very proud of him for realizing he needed the weight. Therefore, we used this time as his Kindle Fire time.
 Later in the day, he did the exact same thing. This time Andrew had to join in on the Kindle Fire time and laying on the couch. Trenton actually tolerated him for a few minutes.
When we went outside Saturday afternoon, Trenton needed to have a sensory break with weight again. Trenton even covered his own legs up outside with his blankets! Good job Trenton!
While Trenton had a sensory break, Andrew mowed the lawn for us!
Today in Sunday School Trenton had a rough day. However, he had a great moment. They always get their attendance charts in the beginning of class and lick their sticker to put on their attendance chart. Today, for the first time, Trenton licked his sticker!!!!!!!!!!!!!!!!!! Who would have thought that something so simple as licking a sticker can make a mother so happy!

Today was day 9 on Clonodine. So far his sleeping is overall better as of now. He is MUCH calmer during the day still. So far.......So good!!!


Thursday, July 25, 2013

Toilet Paper

So what do you do when both boys have been fussy and irritable all day and you are trying to manage therapies, meltdowns, and doctor calls???? You let them roll toilet paper around themselves so you can take a breather for one minute.



Even though Trenton had a bad day, he participated very well in his therapies.  One of his therapist voiced her concern that she thinks Trenton might have a tendency to always label items just by their color. (Trenton is huge into colors). She says once this starts, it is very hard to break. She is working with him on this.
For example, when a therapist points to a car and it is blue. The therapist ask, "What object is this?" If Trenton responds, he responds with "blue". She will say, " Blue Car"

Good Smaritan

Trenton and I had a Good Samaritan help us today. It could have been a terrible situation that would have left Trenton and I stressed out to the max!

Mommy needed gas in the car. Once we arrived in Effingham we had 15 minutes til Trenton's appointment with Heather. I decided to go ahead and get gas. I pull up to the pump, got out of my car, pumped gas, and got back in the car. I turned the key and nothing happened! The car was DEAD! We have ten minutes now til his appointment. What in the world do I do??? ?Of course, I pumped the gas at the pump farthest away from the station. Trenton is content in his car seat ( He has had an extremely fussy, irritable day). No way am I taking a chance and getting him out of his car seat to find us help. I walk up to the station with my eye on the car the whole time. I walk in right behind a middle aged man. I walk in blurting  "I need help. Does a man work here? My car is dead and I need someone to try to jump my car." The attendant looks at me and asked, " Is your car in park? Sometimes that can be the problem."  "My car is in park trust me!!!!"

The guy who I was watching out of the corner of my eye stops in his tracks, walks towards me, and motions for me to follow him. He says I can look at your car and jump it if it needs it! Thank goodness!! I immediately start thanking him, explaining that my son has autism and if I have to wait for my mom to get here it is going to be a terrible situation. I could tell he knew NOTHING on autism but that didn't matter! This was a man who stopped what he was doing to help Trenton and I!  He got my car started!! I thanked him over and over. I wanted to stop and ask him for his address but we were running late for therapy and I figured he would think I was a nut. I don't think he knew how much it meant to me that he stopped to help us. I could not imagine trying to wait with Trenton at a gas station for 45 minutes until my mom arrived. I will never forget this man and what he did for us!!

Meanwhile, while we are in Effingham for therapy a horse walks up to my parents back door. Yes a horse!!  It took a while for my parents to find the owners. Therefore, the horse was still there when we got home so Trenton and I got to pet the horse!!