Thursday, February 27, 2014

This makes me sick to my stomach!

All I have to say is that if this EVER happens to Trenton or anything close to this...........the school system will be paying me forever! I WILL BE THEIR WORST NIGHTMARE!!!!

I watched this video and cried!! And cried some more. How in the world can anyone do this?????? It's a scary world for people with special needs. She will have to answer for what she did one day.

http://www.ksdk.com/story/news/nation/2014/02/26/nicole-mcvey-recorded-autistic-kid-stuck-in-chair/5831933/

Pictures

Here are some cute pictures I just had to post!!

He still loves looking at himself in front of the oven.

 Mommy was acting silly and Trenton thought it was hilarious!
 WOW.....look who decided to look at the camera and smile!! Way to go Andrew. Awful picture of me but I just wanted to show his smile.
 Trenton fell asleep last night holding on to his Toy Story balloon.

Autism Awareness Committee

The month of April is Autism Awareness Month. I am very excited to announce that there is an Autism Awareness Committee that has been formed in Clay County!! We have some great ideas for this community for the month of April. I hope and pray it all goes as good as we are hoping!
If you are interested in helping, please contact me at angelaconrad09@hotmail.com.
As of now, we are looking to get some people to donate old puzzles. If you have puzzles that you are currently not using and would love to donate to our group, I would greatly appreciate it. You can drop off your puzzles at the Health Department in Flora or contact me.

As I have said before on this blog, I promised Trenton I would devote my life to advocating for autism. Who knows, I might be making this promise to Andrew as well. Anyway, one of my goals was to make my own county, Clay County, a much more aware community of this life changing disorder. This dream is coming true!!!!

All 11 Stations & Stop!!!

Trenton continues to have a great week! Yesterday at school Trenton was teacher's helper. When it was time to choose where to play, he read and said "All 11 stations." WOW!!!

Today, he had the best ABA session with Heather that he has had in a long time. He was able to control his behavior, did not hit himself, and had a great work ethic! After we arrived home from therapy, I asked him to type for Nana and Pop. I gave him his iPad and he typed "cat". We all clapped and praised him. I told him to type us another word. He typed "stop", turned his body to look at me, and pushed the iPad away!! WOW!!!! Trenton James you are so smart!! I believe he will be a typist on his own term, just like Carly Fleischmann. I have recommended the book, Carly's Voice on my blog before. This is a terrific book wrote by Carly's father.  Carly is a non-verbal woman with autism who types to communicate. However, when she was younger, she typed on her terms only! Carly's father devoted every minute outside of his job to advocate for his daughter. He still does even though she is a grown woman now. This is a phenomenal book about one family's story and the amazing bond between a father and his daughter with autism.

Trenton continued to be very lovable today. He actually kissed and hugged me on his own terms. He kissed me on my lips!! He normally turns his head away and let's me kiss him. I must say....Trenton is having a fabulous week!!




Tuesday, February 25, 2014

Visit His World

Good Days!

Trenton is having a good week! His eye contact is phenomenal!! I am loving it!! Its amazing to have your child look you in your eye!! Seriously!! It is a blessing. When his eyes lock mine I feel his love!! I just love it!!!!!!!!!!!!!
He is participating very well in his therapies and he played great with our high school senior who comes by on Tuesdays.
He seems to be pacing a little less at night the past week. He has been more cuddly than normal lately.
I LOVE IT WHEN WE HAVE THESE AMAZING DAYS LIKE THIS!!!

He has officially typed the following words:
  • Trenton
  • Mom
  • Hi
  • Go
  • Stop
  • Red
  • Green
  • Blue
  • Cat
  • Dog
He repeated "Andrew" today. Ms. Jenny and Alicia thought that he tried to say their name yesterday. He sure is having some good times lately! Keep up the good work Trenton James!!!



Cars

I had my first humiliating public appearance with Andrew on Monday.  I have always bragged about the fact that Andrew was my child I could take to the store and actually try to act like a normal mom. I found out first hand that if Andrew sees one of his fixated obsessions, the experience will go down hill rather quickly.  Andrew and I walked into Wal-mart on Monday after dropping Trenton off at school. I immediately spotted a big group of Cars balloons that was close to the doors once I entered the store. Once I saw them my heart skipped a beat and I was praying I could go faster than Lightening Mcqueen ever thought about and get around the balloons before he saw them. I was wrong. He spotted them and wanted one. I refused to give him one. However, after listening to him scream "CARS!!!" halfway through Wal-mart while kicking, hitting, and trying to get out of the cart. I gave in and let him have one.  After going back to the balloons and getting him one I thought I could grab my items in peace. I thought wrong. For every Car item we saw, he screamed and had what I call an autistic meltdown. If he does not have autism, then he sure can get the dilated pupils, panic stricken look on his face with  a heart beat that is out of this world. All the while, trying to catch his breath because he is in such a disturbed way. As my mom has said who has raised three normal children and baby sat many normal kids, "That is not a normal toddler tantrum and cry."
Eventually, I gave up on getting all of the items I wanted. He was making a scene and I had already sweated my makeup off and had sweat going down my back in the middle of winter. Just my luck, there was only one lane open to check out who had about ten cars balloons right next to the register. I thought about dodging the store and leaving my cart. However, it was clear everyone was looking at us. How many children have a meltdown in Wal-mart, screaming "cars" 200 times while holding on to the most gigantic balloon ever made! Instead, I stood in line and felt every stare that was glanced our way while he continued to scream. While we waited in line I had a very nice young man ask me if I needed help. He was looking at Andrew as if he had just seen a ghost. I really would have loved to know what was going through his head.
Anyway, I survived my first of many humiliating public appearance with Andrew. I thought I would only have these types of experiences with Trenton. Once again, I was wrong.

Later in the day, Andrew had another meltdown with  dilated pupils and uncontrollable screaming and crying. On a good note, he had a much better day today!

A picture of the gigantic balloon I had to buy.


Sleeping with Lincoln after his meltdown.

Sunday, February 23, 2014

Brotherly Love

The boys have been doing a lot of stuff side by side lately! It is what I call, Brotherly Love!





Trenton finally made me a line. He hasn't done any in a while.



Sleep Deprivation & Survival Mode

( The first part of this email was written in the middle of the night on Saturday night. The last half was finished Sunday evening.)

So here I am, it's 2;00 AM as I start to type this. I haven't slept for more than 45 minutes at a time, I went to bed at 7:30 PM, and it appears I am up for good for a while if not for the day. If it is not one child, it's the other child that is up in the night. Andrew was my baby at one time that I could count on falling asleep and sleeping til the rooster crowed at 6:00 AM. It is not like that anymore. Thank goodness he is not like Trenton though. When Trenton wakes up, 90% of the time he is up for four hours plus or he is just simply done sleeping for the night. Andrew, on the other hand, simply wakes up crying and needs to be snuggled or rocked back to sleep. This has been happening an average of six times a night.

What does an autism mom do? Well, I am a parent who has children with sleeping issues. So I go to bed knowing I am not in bed for long and that way I never go into a deep sleep so I can hear the boys and respond when I need to. I know all too well, and I have learned the hard way, you have to respond immediately or it can be very bad news. As I am sure, you autism moms and dads who are up in the night with your children that are reading this will agree!

Trenton's sleeping has improved tremendously the past year. It will more than likely never be normal but we have improved! There are several autism mom's blogs that I follow and many moms write about the same things I do. One of the issues they write about is the lack of sleep. One mom has a 9 year old daughter with autism and her sleeping just got bad around the age of 7. Another mom types about how her son sleeps good for several months and than he sleeps awful for several months at a time. I read these blogs and it prepares me for what might be ahead........and that is never sleeping through the night again!


Ok, now it is Sunday. Trenton didn't let me finish my post. That is no surprise. Normally, I have to be doing what he wants me to do. That normally consists of sitting in the middle of the floor while he paces around me or I have to pace with him. FUN FUN right? Anyway...... back to the sleeping issue.

On Saturday afternoon my mom asked me a question. My response was, "Mom I am so tired. I don't even feel human. I am suffering from sleep deprivation again." My mom responded with a concerned look, " I know. I just don't know why you had to be so lucky to have both of them with sleeping problems?' I'm not sure either!

Besides crying to the doctor last week, I haven't even had time to mourn much about Andrew. It is obvious we are witnessing him regress daily and the pain that puts on a parent is one of the worst pains one can endure in this life.  As my mom and I said, I am in survival mode. What is survival mode? It is taking action now. It is grabbing that bull by the horns and doing what you need to do to survive. I am eating, breathing, sleeping autism and it simply doesn't even give me time to really grasp what the heck is going on right now!!! My Andrew that I once knew is leaving me and he will never be back.

 The pain can not be put into words. In fact I tell the good Lord every day that I am ready. Please I am ready, let's send your son down to this Earth and go home! Home where I can watch my precious babies be free of their trials. However, until that time comes, I am devoted to my boys every minute of the day. I try my best to read some scripture daily to help me get through this. I can not imagine going through this daily without my Lord and Savior!

One of my scriptures this past week was this......
2Timothy 4:7-8I have fought the good fight, I have finished the race, I have kept the faith. Finally, there is laid up for me the crown of righteousness, which the Lord, the righteous Judge, will give to me on that Day, and not to me only but also to all who have loved His appearing
There are days I want to have a pity party but when I read a scripture like this, it gives me a boost to get through  the day. I am fighting the fight and I know I will get my reward for everything I am doing for my children and, of course, the fact I live the Christian life. My boys are innocent and we will have the best time in Glory Land free of what we endure on this Earth.



Friday, February 21, 2014

Trenton is 3 1/2 Years Old

Trenton is officially 3 1/2 years old. I was watching a home video the other night when Trenton was 2 and Andrew was 1. I can barley watch our videos without crying. Raising a toddler with autism is extremely hard but it just might be the best years of our life. The toddler grows up to be a teenager with autism and then a grown man with autism and we all know the decisions that we will cross during those years. I am not looking forward to that time at all.
However, he is 3 1/2 now and he is simply my hero in this life! Let's talk about what Trenton loves and dislikes right now.

Trenton loves:
  • His stuffed animals
  • His animal & Little People figurines
  • To paint & color
  • Puzzles
  • To watch Baby Einstein, Blue's Clues, The Wiggles,  Elmo, and any video that has anything to do with the alphabet.
  • To Run, run, run, & run some more!
  • To eat McDonald's or Burger King's chicken nuggets. His eating habits change about every 4 months. Right now he won't eat a french fry and he use to live off of those. However, he will start eating them again soon!
  • To eat pork roast.
  • Cheez Its. However, don't you dare buy the ones that can come with letters on them. This sends him into a frenzy every time. Letter do not belong on his cheez its! He also loves to eat cheese stix, cake, and ice cream.
  • To take a bath. Wow, we have came a long way in this department!
  • The alphabet and numbers.
  • His Grandma Great blanket's.
  • Animals, especially horses
  • Mailboxes
  • The color green and yellow
Trenton dislikes:
  • When his routine is off schedule.
  • When Andrew is around and taking Mommy away from him when he wants Mommy.
  • Too much free time.
  • The sound of the microwave
  • Lights on in the house. Yes we are still living in the dark.
  • When his lines are messed up.
  • Holidays. It is way too many people around and way too much stimulation.
  • Milk and many other food items.
  • Wearing a winter coat
  • Tags on his shirts.
  • Button down shirts. It is a huge battle to get them on him on Sundays.
There are lots of other likes and dislikes but these are the ones that just came to me.

Trenton has had a great week! He has only tried to eat paper once. He peed on the potty one time. He spelled his name for Jill, his speech therapist, and he spelled mom for her today!!  His behavior has been much calmer this week. I love weeks when he is not as wild.
His sleep has been great lately! Now I hope I just did not jinx myself.....that is usually what happens when I mention sleep on this blog.

What a beautiful Angel in Disguise, right?

Thursday, February 20, 2014

Sensational ABA Session!

Trenton had a sensational ABA session yesterday. Wow! He left his in home ABA therapist, Alicia, speechless. When she ended her session with Trenton and came out of the room to speak to me, she had tears in her eyes and was literally speechless. When she was able to talk, she told me that Trenton read for her.
What happened was she has flash cards with animals, shapes, colors, and  household items on the card. On the back of the card has the name of the picture. She was showing Trenton the pictures and he kept on motioning for her to turn the card around and lay only the word side up on his desk. Well, not thinking that he would be able to read to her, she did what he wanted and never showed him the picture, and he said the word each time. Trenton said the word for all the basic shapes, animals, and colors with only looking at the word. I think what shocked her the most, is that he was able to try to say the long words such as rectangle. Mommy is extremely proud of him!! I just hope one day he can turn his therapy words into functional speech!
Trenton has seen the way to spell all of these words numerous times while watching Baby Einstein and during all of his therapy sessions since he was 18 months old. He just needed to see the picture and the word together once to know! Way to go Trenton!!

Earlier in the day we were in Effingham and had an ABA session with Heather. Trenton did a great job coloring the exact part of the picture he was suppose to with the color that Heather told him to pick up.
 She told him to make the letter T. He did a great job!

 She told him to make the letter R and the letter O. He did a great job making the letter O.

Wednesday, February 19, 2014

The Long Wait Starts Again

The long, dreaded, frightful wait starts all over again. A wait that no parent wants to be a part of. Yesterday, Andrew had a check up with our pediatrician. After Andrew was examined, the doctor asked about his milestones and this is where my eyes filled with tears and the doctor's face dropped a thousand looks of concern in a matter of seconds. As I was talking about Andrew, the tears rolled down as I tried to keep my composure. We talked for a long time and our visit ended with Andrew being referred to a specialist. The pediatrician said, as of now, it appeared that Andrew was on the autism spectrum but on the mild end. A lot can happen between 2 and 3 years of age so we pray that Andrew does not regress anymore.

I know Andrew is very different than Trenton. Trenton is a classic, severe case of autism with many other issues such as sensory processing disorder, anxiety, ADHD, and possibly a mood personality disorder.
There is a saying that goes like this........."If you have met one child with autism, you have met one child with autism." They are all different.  It's why it is a spectrum.

For so long we thought Andrew was 100% neuro-typical. Unfortunately,  it appears autism came in and took away some of him. We were so thankful that we were going to have at least one normal child. Now it appears that dream is ending and instead of a mom to one child with special needs, I am becoming a mother to two.  I'm not sure how I woke up to this living nightmare but I did. My words of advice to anyone who has not lived through a life changing tragedy is this...........Appreciate every minute of your normal life because it can change before you least expect it.

John 16:33

These things I have spoken unto you, that in me ye might have peace. In the world ye shall have tribulation: but be of good cheer; I have overcome the world.

 Romans 12:19
Dearly beloved, avenge not yourselves, but rather give place unto wrath: for it is written, Vengeance is mine; I will repay, saith the Lord.

Monday, February 17, 2014

He spelled his name!!!!!

My little typist is getting really good!!! Today when I asked him to spell his name, HE DID!!!
It was adorable to watch. At first he typed in "Tref". Once he typed in the "f", he stopped, looked up in the air, erased the "f" and finished his name correctly!!! I am so proud of you Trenton!!!!

Of course, I had to take a picture of the first time he spelled his name!

Objects of the day!

Like I have said before many of times,  I have no idea what the "objects of the day" will be. These are his securities for the day and he will not leave home without them. They go everywhere with him, which means they go to school, therapy, church, and Nana's house. One day last week, it was two of his small stuffed animals. Once we walked into therapy, he sat them in a chair outside his ABA room.
 A few days last week, it was some of his letters. Once we arrived at therapy, he lined them up outside his ABA room.
 Sunday and today, it was his whale, dolphin, and seal. They even took a bath with him last night.
 Today, he added a monkey into the mix. Once we arrived at therapy today, he lined up the three below and held the whale.

A quote I came across today.....

“We could never learn to be brave and patient, if there were only joy in the world

Sunday, February 16, 2014

Sensory Overload Simulation

http://blog.theautismsite.com/sensory-overload-simulation/

I am very thankful there are videos out there like this to help educate. However, once I watch something like this I want to run to the bathroom and vomit. Just thinking of Trenton having to live his life like this sets me over the edge. Like I have said before....shame on me for ever having a self pity party. I had 30 normal years where Trenton will never have any.

Saturday

Trenton did great using his iPad to communicate with me on Saturday. The Proloquo app is not all the way set up yet but I do have some things on there. For example, this is what his "toys" folder looks like.

First, when I asked him what he wanted to do, he hit the "play doh" button. Therefore, the boys and I played with play doh.
 Next, Trenton hit the "color" button.
 Then, he hit the "shape sorter" button.

Good Job Trenton!!!!

He wanted some free play after all of that so we took the boys outside. We have had an abundance of snow and sub zero temperatures this winter. Trenton was not interested in the snow at the beginning of winter, however he showed some interest in the snow after our small snow fall on Friday. Trenton actually wore gloves on Saturday too!!! YAY!!!
The boys loved the snow!

 Oh No...they fell off!
 Did you notice the ice cream on the sled? That was Trenton's objects he had to take outside with him.
 Look at that smile!! He loved running in the snow. When you see a picture like that, its almost unimaginable to think that he has autism. Autism is such a hidden disorder.

 We also had Lincoln's 2nd birthday party. Trenton loves balloons! He gathered them all up and had a good look at the snow outside.
 The boys enjoyed his cake.

 Trenton enjoyed Lincoln's football helmet.
 He is in this bed somewhere. He wanted all of his animals on top of him to help him fall asleep on Saturday night.


Ecclesiastes 7: 13-14

Consider the work of God: for who can make that straight, which he hath made crooked
In the day of prosperity be joyful, but in the day of adversity consider: God also hath set the one over against the other, to the end that man should find nothing after him.

Friday, February 14, 2014

Valentine's Day

I have always got the boys a Valentine present. Normally, the presents are left over Christmas gifts that I never gave them because they received too many gifts from relatives. They loved their presents this year! After Andrew opened his, he said "more present."


  Mommy attended Trenton's Valentine Day party at his school! I love attending his parties.
 After school and therapy, Trenton did the unthinkable!! He helped Mommy eat her salad. WOW!!!! The only thing healthy I have ever been able to get him to eat before today was applesauce and green beans.
 After Andrew came home from Nana's house, the boys enjoyed their gifts and cards from Nana and Pops.


If you didn't notice, Trenton has had his hat glued on him for the past 24 hours. It was a big hit at therapy. Everyone love it!!

Thursday, February 13, 2014

Woody

I'm not sure which boy did this..............
but it sure lifted my spirits on a bad day!

I have a typist!!!

I am reintroducing the Proloquo2go communication app to Trenton. We started off using the Go Talk app but I think he is ready for the Proloquo. The reason I want to start using the Proloquo app is because it has a keyboard. I read a book, Carly's Voice, and that little girl with autism was non-verbal but able to spell words to her parents. Anyway, I showed Trenton the keyboard and I spelled his name to show him what to do. Next, I gave it to him.
Mommy said, "Spell dog."
With a huge smile Trenton spelled dog immediately. I praised him over and over. Of course, I ran and grabbed the camera.
Next, I said, "Spell cat."
Again with a huge smile on his face, he spelled cat.

Mommy was very impressed and proud of him!!!!! Of course, this is all memorization. A large group of individuals with autism learn from their photographic memory and I have no doubt he has one. He may never be able to spell by phonics but if he sees a word  and hears it, you can betcha he will spell it!!
He has recognized his name for several months now and it was a year ago that he saw the words, "ice cream" and tried to say it. He only needs to see it once and he knows it!

I can't wait to show it to him tomorrow. I think I will ask him to spell fish and car.

ABA App

While Andrew was at Nana's, and he has been there every day and night this week, Trenton and I worked on an ABA app. Trenton had to pick which one was different.



He Loves Me!

There is no way I can put in words what it feels like to raise a special needs child, especially one with autism. Autism moms are desperate for some type of emotion from their child that shows them that the child they are raising does care about them. On most days we get kicked, punched, hit, and hear nothing but tears and screams throughout our days. Yesterday I had two different occasions that told me that Trenton does love me and cares about me.

The first occasion is one that happens almost every day now. When I drop him off of school with Ms. Jenny, he fusses a little and watches me walk out the door before he will turn and walk to his class with Ms. Jenny. This really struck me yesterday. I walked out of the school with tears in my eyes but they were happy tears. That little gesture of watching me leave while he fusses was pure joy to me.

The second occasion happened in his ABA session with Heather. After working with her for 20 minutes, Trenton starts doing the sign for "mom" while saying "mom". Heather kept on redirecting him to a new task but he did it straight for 35 minutes. With that said, she decided she needed to reward him for using his words and communicating. Therefore, he had a short session with Heather but I was ecstatic that he was saying "mom". This put the biggest smile on my face that I have had in a long time!!!!




Wednesday, February 12, 2014

Pica

Trenton is going through a phase of pica eating. Three days in the past week, his body is craving paper and he wants to eat paper. This is very common in autism. Like one of Trenton's therapist told me...."Trenton has it all with autism." Unfortunately, he does. It all just varies due to his Sensory Processing Disorder. One day last week during one of his OT sessions, he tried to eat items that were not edible too. I pray this phase goes away fast.

However, he is sleeping good this week so far!!
The other night he fell asleep on the floor of his bedroom.
 Last night he fell asleep on the couch with his hat on after countless hours of pacing.