Wednesday, July 30, 2014

Vestibular and Proprioceptive System

Trenton always has sensory problems. However, the last week it has been bad. Andrew has sensory problems too and his problems are becoming more evident as he gets older.
Trenton has had some major issues with his vestibular and proprioceptive systems the last week.
Here is some information on these....
 
Vestibular System: The vestibular system refers to structures within the inner ear (the semi-circular canals) that detect movement and changes in the position of the head. For example, the vestibular system tells you when your head is upright or tilted (even with your eyes closed). Dysfunction within this system may manifest itself in two different ways. Some children may be hypersensitive to vestibular stimulation and have fearful reactions to ordinary movement activities (e.g., swings, slides, ramps, inclines). They may also have trouble learning to climb or descend stairs or hills; and they may be apprehensive walking or crawling on uneven or unstable surfaces. As a result, they seem fearful in space. In general, these children appear clumsy. On the other extreme, the child may actively seek very intense sensory experiences such as excessive body whirling, jumping, and/or spinning. This type of child demonstrates signs of a hypo-reactive vestibular system; that is, they are trying continuously to stimulate their vestibular systems.

Proprioceptive System: The proprioceptive system refers to components of muscles, joints, and tendons that provide a person with a subconscious awareness of body position. When proprioception is functioning efficiently, an individual's body position is automatically adjusted in different situations; for example, the proprioceptive system is responsible for providing the body with the necessary signals to allow us to sit properly in a chair and to step off a curb smoothly. It also allows us to manipulate objects using fine motor movements, such as writing with a pencil, using a spoon to drink soup, and buttoning one's shirt. Some common signs of proprioceptive dysfunction are clumsiness,
a tendency to fall, a lack of awareness of body position in space, odd body posturing, minimal crawling when young, difficulty manipulating small objects (buttons, snaps), eating in a sloppy manner, and resistance to new motor movement activities.

Trenton seems to be hyposenstive and need a lot of pressure on his body...like I am talking weights! Unfortunately when he is having trouble feeling his body in space, he needs a lot of  input on his body. He tried to control it by running and jumping on furniture, hitting everything, swinging his body around, swinging his arms, shaking his head back and forth non stop, and having a lot of anxiety.

What I need to do is bounce him on his therapy ball, put pressure on his legs and body, put his compression garments on, make him lay down with his weighted blanket, swing him in his swing, and many many other things.Its constant non stop sensory input on these days and its been going on for a full week! UGH!
It has definitely interred in his therapies this week so far.
All I can say...its one crazy household..... I can't imagine not feeling my body.

Andrew, on the hand, is hypersensitive. His body is very sensitive. Andrew will cry at the drop of a hat. He can barely rub his elbow against a chair and he cries. However, to him it feels like a knife stabbing him. Hence, the reason why he feels very fearful at times.
Tonight was the first time in one week that Andrew let me bathe him. He has screamed at water touching his skin until today.

Both my boys have sensory issues and they are complete opposites as of right now. UGH!

With all of these issues, he also has major problems with his hearing. On some days he can't filter out all of the noise around him. He hears things that neurotypical people do not even hear. The other day when Daddy was mowing the yard, Trenton did not like the sound of the lawnmower from inside our house. To him, I am sure it sounded like 100 lawnmowers exploding only inches away from him. I was proud of him because he knew what he needed and he grabbed his headphones and wore them for awhile.

Monday, July 28, 2014

Pirate

The other morning while watching Elmo who was acting like a pirate, Trenton put on his sunglasses and had me take one side out. He kinda looked like a pirate who wore an eye patch to me!

Sunday, July 27, 2014

What being a special needs mom feels like

Click on the link to hear and read a few good words from a special needs mom!

http://www.autismspeaks.org/blog/2014/07/22/what-being-special-needs-mom-feels

Chuck E Cheese

The only thing I tried after our dentist appointment was Chuck E Cheese. IT WAS A DISASTER!!!!!!!!!!!!!!!!!!!!

Trenton was in sensory overload. Andrew didn't like it. I think he was in sensory overload as well....so we left rather quickly. Trenton ran from ride to ride going 100 mph. He would sit on a ride, put in the coin, ride the ride for ten seconds, and try to get off. Therefore, I was left trying to force him to stay on the ride until it stopped so he wouldn't get hurt or get him off the ride. Most of the time I took him off the ride and the second I put his feet on the ground, he we went running full speed ahead. There was no looking around at anything. Eyes had to be on him or he would have gotten away like he did on the 4th. It took two people to tag team Trenton while one person took care of Andrew. Andrew was not going to run away because he was a little scared.

I took a few pictures of Trenton on a few rides but the pictures give a totally different story.

 Trenton liked how the steam came out of this ride. However, he didn't stay on this ride any longer than the rest. Nevertheless, it was the only few seconds that I saw a smile!

 

 Andrew did not even make one complete turn on this small ride. He did NOT like Chuck E Cheese.

Once again, this experience was not relaxing or enjoyable. We were only in the place for a very short time. Its just a reminder of how our family can't do anything. I really really wonder what it would be like to relax and watch your children play and enjoy themselves???

Saturday, July 26, 2014

Andrews first trip to the dentist

Andrew had his first dental exam on Friday with our fabulous pediatric dentist. His first exam was going to be in October. Lately I had noticed that three of his back teeth were turning dark rather quickly. Therefore, I moved his appointment up and, unfortunately, we received bad news. Andrew has to have some surgery on his teeth in the next few weeks.  Andrew will have to go to the hospital and be put to sleep in order for the dentist to work on three of his teeth. These three teeth are so bad the doctor might have to do a crown on them. He mentioned one might need to be pulled out and another might just need a filling in. They are three teeth that he will have til around age 11 which is why he needs to have it taken care of.
Bad teeth and autism go hand in hand normally......ugh....we are finding out first hand how true that statement is.

Andrew did not do very well waiting for the dentist. In fact, he caused an awful scene in front of a lot of people. However, I am used to managing these scenes.

He is extremely fussy in the below picture waiting on the dentist.
 After the dentist he was worn completely out so he took a nap.

Genetics play a bigger role than environmental causes for autism

Great article on how genetics plays a bigger role than the environmental issues with autism.

http://thechart.blogs.cnn.com/2014/07/22/genetics-play-a-bigger-role-than-environmental-causes-for-autism/

Friday, July 25, 2014

Andrew is getting ABA!!!

I am very happy to inform you that Andrew had his first session of ABA in our home with Alicia this week! We just love Alicia and wish we could have her with us all the time. However, she is going to work with both boys from now on. She will work with Trenton for one hour and then Andrew for one hour!

Andrew also had his first solo session with Heather this week too! We love her too and I am very excited for Andrew to have his own session with her weekly too!

Andrew did excellent for both ladies this week!

Our therapy schedule is starting to get real crazy! Its a good thing! We have to prepare for their future and it has to start now!  Juggling and managing two boys with autism and their therapy schedule is about all that one special needs mom can do!    

Thursday, July 24, 2014

What it is like to have Aspergers

The video that I have attached at the bottom does an excellent job at describing what high functioning autism individuals, formerly known as Aspergers,can feel like. It's horrific! So just think what Trenton with severe autism feels like. Think what Andrew with his type of autism feels like. The doctor who diagnosed Andrew clarified that Andrew was not Aspergers, his autism was more complex.

 A lot of this video reminds me of both of my boys. The one that really stood out was how water feels on their skin. For one, Andrew hates water being splashed on his skin, especially his face! If it feels like hail hitting his body...wow! Sickens me as a parent. I will do everything to make sure he does not have to feel this.  In fact, this  past week he has cried a lot while being in the pool and sometimes his tears came from being squirted in the face with water. If it felt like hail, I don't blame him for crying.  Andrew's behaviors are changing for the worse lately. It makes my grief, sorrow, and stress magnified to a much higher level than it has been in a long time.
On some days I have had about all I can take of the people who think my kids just need to "toughen up". Many, including some close to us, think this of Andrew. I hope this video opens up your eyes a little.

As time ticks on, the boys are growing a much larger gap between children their age and themselves. It makes everything harder. It is easy for them to blend in while they are young. Trenton does not blend in anymore. Andrew still blends in but a year from now he won't unless he makes HUGE gains in the next year. I have seen a big difference between him and his cousin, Lincoln the past few weeks. Over all, Andrew is displaying much more difficult behavior than a year ago. It scares me! (Just a reminder that I don't "sugar coat" anything. I don't hide anything. I tell it like it is! This blog is all truthful facts of what life is like with these boys. )

I hope you take time to watch the video. Also, a reminder that if you have Netflix, take time to watch Sounding the Alarm. It will be an eye opener for many of you. Not for me...but for many of you.



http://blog.theautismsite.com/life-with-high-functioning-autism/?utm_source=social&utm_medium=autaware&utm_campaign=life-with-high-functioning-autism&utm_term=20140723


Wednesday, July 23, 2014

Thank you!

I owe someone a thank you and I don't know who it is. If you read this, you know who you are and what you did! I thank you from the bottom of my heart. When I heard the news on Tuesday, I was left in tears!! Many of thanks!

I don't doubt at all that my prayers are not being heard for the boys because they are. God tells us he hears the fervent prayers from the righteous and he answers them. It may not be how we thought or how we want him to answer but he answers them. My prayers are being answered through many of you!
God is good! HE is real good!




Grief



 Having children with autism is daily grief. That may be hard for most people to understand but live in my shoes and you will understand. I saw this pin today and it fits perfectly..






Ups and Downs

As always, the past few days have had its ups and downs. First, lets talk about the good!!!
I am so happy and proud of Trenton in the fact that he has ate fairly well the past three days!!!!!!!!!!!!!! Yes, that is one area that I fail at educating people one. For the last 6 months, Trenton has only ate pizza, pork roast, McDonald's chicken nuggets, cake, and ice cream. On Monday when given a choice between pizza or spaghetti, he picked spaghetti!!!!! He has ate one serving of spaghetti a day since! He has also ate scrambled eggs and french fries! He use to love both of these about a year ago but has not ate them for a very long time. A daily stress is always figuring out what Trenton will eat. I hate to admit that I have wasted a lot of food the past few years because of his picky eating.

Another moment to celebrate was tonight. When  I came home from church, Trenton smiled and said "mom". It made my night!!

Like I said, we have had some not so good moments this week too.  I have no idea what sleep is this week. On Tuesday morning Trenton fell asleep on our first car ride. So I pull in my drive at 8 AM. I know he will wake up if I try to move him so I lay my seat back in hopes of getting some shut eye myself in my van in my driveway. Now that is an example of sleep deprivation!

Here he is sleeping in our driveway after a rough night.

 


Last night, Tuesday night, I battled a horrible meltdown from Andrew. He was tantruming all evening and it turned into a full blown autistic meltdown which lasted for over one hour. Thank goodness that Trenton was having a good night because Mommy's hands were completely tied with Andrew. Sometimes it is extremely difficult with just Mommy and two autistic boys when one is having a meltdown. Many children on the spectrum's behavior gets worse as they get older. Andrew's behavior is so up and down. His mood and personality can  change drastically in an instant, just like Trenton.

I was so mentally exhausted after batting the boys and  in particularly Andrew's meltdown on Tuesday evening . I was hoping for a good start to our Wednesday. Our morning was very rough. Mommy was lucky to get the boys fed, ready, and out the door by herself. However, we managed. As the day went on, it turned out to be a good day.

The boys did good in therapy. Ms. Jill let Trenton take home his favorite toy from speech which are these animals....



He had to hold the giraffe in his car seat the whole time.
I want to point out the new 5 point harness booster seat that I had to get Trenton. Last Wednesday on the way home from therapy, Trenton was getting out of his car seat and standing up in the van while I was driving. Not good!! Mommy had to pull over numerous upon numerous times. Andrew just kept on looking at Trenton saying, "Trenton!" I think Andrew knew that Trenton was not suppose to be getting out of his booster. It was a really bad car ride last Wednesday with the boys so I ordered him a new one! This one is much safer!
As many car rides as the boys and I go on...we need to be safe.
Speaking of car rides....the other morning at 7 AM we were on a car ride and we ran into Pops in his road grader. Andrew was very happy....can you tell????



Sunday, July 20, 2014

Sunday Pictures!

I love Sundays! Its a day to worship the Lord and a great day to spend with family and not worry about therapy.

We took a few pictures before church today. I was very impressed with Andrew! He actually looked at the camera and smiled!

The second the boys jumped off my lap, Trenton dropped the items he was holding. He got on my lap and said "cheese". He wanted a picture of just me and him!!!!!!!! I know he did!!!! However, he couldn't bring himself to look at the camera but he did the best he could!! I love it for the story it tells!




 Hebrews 11:1-3
1 Now faith is the substance of things hoped for, the evidence of things not seen.
For by it the elders obtained a good report.
Through faith we understand that the worlds were framed by the word of God, so that things which are seen were not made of things which do appear.

Faith is an amazing thing! Faith has made me the person I am today!


Short 8 minute video of our daily life

Here is a video from two months ago that I tried to post. I was having a difficult time getting the video to work. However, I uploaded it on youtube and wanted to share. The video is of Trenton, Andrew, and Mommy. I had been trying to calm Trenton down for 45 minutes before I decided to get the camera out and just try to video tape a few minutes so people can better understand what my daily life is like with the boys. In the video you will see Trenton hit Andrew which is very common. Trenton takes his anger out by hitting Andrew or himself. This short 8 minutes does not do it justice but I wanted to share what I go through daily trying to figure out what a non-verbal child with autism wants and/or needs at that particular moment.  As Trenton and Andrew gets older, our days get more difficult.

Click on the link below to see the video







Saturday, July 19, 2014

Yes/No & Pictures from the week

This past week in therapy, Andrew's therapist starting working on yes/no questions with him. Andrew would be asked, "Is this a __________?"  In the blank would be a picture of an item that he knew, such as a bird. Andrew would have to answer yes or no while he was shown the picture card for yes/no. From what I gathered, this was extremely difficult for Andrew. I don't believe he answered anything. Unfortunately, this is no surprise to me. I have noticed lately while working at home with him myself, that he had no real concept of what yes/no means. Andrew has a lot farther to go in understanding language that what it appears to most people.


All smiles Thursday morning going to therapy!
 When he goes to see Heather on Tuesdays with Trenton, he loves to play with the Despicable Me character.

Trenton and Andrew work well for Heather. I think Trenton loves the fact that Andrew is with him during his session.


Andrew loves his structure play time with Mommy too!


 One morning this week, Andrew curled up with me on the loveseat. I started humming the tune to "The Old Rugged Cross", he accidentally fell asleep for a few minutes.
 

 Trenton has spelled a lot this week. A new word for him this week was "bear". He was working on his alphabet puzzle and spelled bear:)
 


The poor guy has had an awful week sleeping. When he has such a hard time with his sleep, that is when I  love to take pictures of him when he is out of his misery and finally sleeping.








The boys with their Pops tonight. All three had Illinois shirts on. The picture like always, speaks many words with neither boy looking at the camera...


Friday, July 18, 2014

Sounding The Alarm

http://www.autismspeaks.org/sounding-the-alarm

A shot...again

It's been a busy day. Busy days are more difficult after really bad nights like last night. However, we survived our full day of therapy. However, Trenton's day did not stop after therapy. He had a doctor appointment for a rash. It turned out he has a yeast infection and an ear infection. As always, it makes my stomach turn...how long has he had an ear infection and I didn't know?!?!?!? I can't even begin to describe how difficult it is to try to figure out what is wrong every minute of your child's life when they can't communicate. A good friend of mine came and spent some time with me on Monday. Her eyes were open to what life is like all day with two boys on the spectrum. Right before she left, she shook her head and asked, "How do you do this everyday?"

  Anyway, all of  this meant we had to go to the hospital for a shot. Trenton already cried for 50 minutes straight at the doctor office. ( Watching an almost 4 year old stand and cry for that long is very disheartening.) It was brutal. He cried for so long he had red blotches all over his face. Sadly, it didn't stop at the doctor office because we had to go to the hospital. To say the least, he did a lot of crying there too. In spite of that, we had the best nurse ever. Seriously! Right before they were ready to give Trenton his shot, the lady giving the shot asked very politely, "Am I going to need a lot of people to hold him down?"
I said with a sigh, "Normally, everyone makes me hold him and someone else helps me while the other person does the shot or exam."
At the same time I said this, a nurse walked in and greeted me with the most heartwarming smile I had received in a long time.
"Oh no." She says. "You are not holding your own child down. He needs you to be his comfort when it is done. I am not going to let you help. I will hold him down, I am strong enough."
I just smiled and teared up.
The nurses got to it and gave him his shot. Trenton ran to me for comfort. I looked at the nurse with tears in my eyes and said, "No one has ever been that nice to us. Everyone is afraid of him so they have me hold him down with assistance from others. We have been in and out of hospitals from here to Saint Louis and no one has ever been that nice to us.'
The nurse was totally shocked when I told her this. In fact I made her cry.
Sadly, it is true. Every time I have just wanted to be his comfort when it was over and not the person holding him down with the most force. This nurse, whom ever she was, was the nicest anyone has ever treated me and most importantly, Trenton.

The mirror can normally make him stop crying for awhile....that didn't even work today.
He cried in front of it while holding his Kindle.
There have been several times when I have been up for 24 plus hours at a time. I hate to say.....but tonight is one of those nights. I have been up since 1:15 AM this morning and it is 11:15 PM and Trenton has already been to bed and up by 9:30. It appears he is not going to be anytime soon either...UGH!
Around 9:30 this evening it was an ugly scene....two boys with autism having tantrums and both wanting Mommy. Needless to say, I needed help.....Andrew is sleeping at Nanas again tonight.


Tuesday, July 15, 2014

God Is Good!

God is good!

After a night that left me tired and physically exhausted...Trenton and I embraced in an amazing music therapy session! Trenton, Mommy, and Stacey all had joint attention for 30 minutes! Trenton and I danced, smiled, laughed, and had the most amazing eye contact during his session today. It was perfect!!! PERFECT!!! It was definitely  30 minutes that I will never forget and hold on to forever!

1 Chronicles 16:34

Oh, give thanks to the Lord, for He is good!
For His mercy endures forever.[

Monday, July 14, 2014

Words!!!

I can not be more thrilled to share with you everything that Trenton has done today!!!!
Trenton had an amazing day!!!!

 He said "owl" when looking for his owl blanket.
He said "ganket" for blanket when looking for his blanket.
 He walked up to me and Nana and said "hug" and he leaned in for a hug!!!!
He looked me right in the eye and said "cheese puffs".
He looked me right in the eye and said "cake"
When he was playing with some of his alphabet letters he brought me the letter "T" and said "toes".
He also brought me the letter "f" and said "feet".
He also brought me the letter "h" and said "hair".
He brought me the letter "q" and said "quiet"
He brought me the letter "j" and said "jump"

I received several hugs and kisses throughout the whole day. It was AMAZING!!!  AMAZING!! I pray this continues!

We are fighting major battles in other areas, but we had some words today!! God is Good!

 Psalm 100:5
For the LORD is good; his mercy is everlasting; and his truth endureth to all generations.

Sunday, July 13, 2014

Full Moon

I am a firm believer that the moon affects autistic behaviors. I have believed this for some time now. I have taken notes on Trenton and even Andrew  now and all the note taking proves one thing....full moon is not good for autism!

 There was a supersized moon last night. One of the biggest full moons of the year — a so-called "supermoon" — lit the night sky on Saturday but is only the first in a lunar triple-play this summer. During this weekend's supermoon, the July full moon will appear about 30 percent brighter and 14 percent closer than a typical full moon. Last year, the full moon of June made headlines with its super luminosity. In 2014, skywatchers will see three supermoons this summer, one each during the back-to-back full moons in July, August and September.


According to an article in Scientific American there is a  theory that that the full moon’s ­supposed effects on behavior arise from its influence on water. The human body, after all, is about 80 percent water, so perhaps the moon works its mischievous magic by somehow disrupting the alignment of water molecules in the nervous system. But the article also goes on to say that "the gravitational effects of the moon are far too minuscule to generate any meaningful effects on brain activity, let alone behavior."  So what gives?  This seems to be in direct opposition to the many, MANY folks who say their ASD kiddos act crazy and out of control  during a full moon.  I have read theories, some plausible, some ridiculous, but even though "Full Moon Madness" has been supposedly debunked- it is apparent that those doing the "de-bunking" weren't raising or caring for someone on the spectrum.  Or heard the mountain of  anecdotal evidence from law enforcement, labor and delivery nurses, or doctors working in  psychiatric facilities.
  

 Countless parents document what life is like with autism during a full moon. If the theory is not true...then why do so many autism parents dread the full moon?? Google it please and you will find lots of information about this.
I do believe the supersized full moon led Trenton to have the kind of behavior that he did last night. Unfortunately, I am afraid we are in for it again tonight....
 

Night

Some people have light at the end of the tunnel for their sorrows and tragedy in life. I am starting to think there is no light for Trenton and I. His sleeping and autistic behaviors are about as bad as it can get. I try not to blog about every night but sometimes there are nights that really need to be posted so the world can be educated. Unfortunately, due to no physical disability...autism families are judged.
 Last night was one of those nights that need to be posted. My total hours of sleep was two. TWO! It doesn't matter if I get 10 hours...autism is mentally and physically draining but when your total is only two...nothing can describe what my body feels like now  and what it will feel like at the end of this day. But that's not the focus of this post. The focus is what I saw my own child do last night. WOW! I wish I had it videotaped and there would be many jaws dropping at what autism is really like.

I have never done drugs. Therefore I have no idea what a drug addict goes through when their body is craving it. I have heard stories. That is about the closest that I can get to describing what Trenton's body was like all night last night. He was shaking.....he was running...he was pacing....he was verballing stimming non-stop...he was hitting himself in the head....he was tossing toys and stuffed animals all over the house....it was as if he had no control over his body until his body got what it wanted. However, in Trenton's case, there was no drug to give him to calm him down. It was simply autism. His body was out of control and he couldn't feel his body which leads to his crazy, out of control acts. The adrenaline that was running through his body was out of this world. He was trying to catch his breath all night....he simply couldn't breathe right because of his adrenaline and non-stop moving. He was vomiting liquids all over house. His body was going 500 mph and his body could not handle it so he was vomiting non-stop because he couldn't just stop and relax. So what does your body do then....vomits!

I thought for sure by 1:30 AM he would be asleep by 4:00. No....its 8:00 AM and he is still wired beyond belief. Thank goodness Andrew spent the night with Nana and Pops because there was no way he could have slept through it. I have no idea how Tim did. Trenton was running full force into the walls and into every bedroom door.I wish I would have never seen what I did last night. I am just thankful Andrew was in good hands at Nana's house.

Saturday, July 12, 2014

Swing

I'm not sure what we would do without our swing. Its the biggest help with Trenton. However, Andrew has been falling asleep in it lately.
What am I going to do when they are too big for Mommy to pick up and put in bed?????? I just cherish each moment of our time now. One day I will look back and wish they were this small again.





Out to eat!

Wow!! The boys went out to eat tonight!!! This does not happen very often! Of course, it was a very quick stop but we succeeded without any huge problems!  Was it hard work for Trenton? You betcha! He made his noises that he does when he is verballing stimming. He made his body movements he does when he is trying to filter the environment out. However, we made it through!!!! It took three adults but we did it!
I am so proud of you boys!!



Going into a restaurant is one of the things that most people take for granted! For us...its a rare occasion and we embrace it when it happens!

Thursday, July 10, 2014

Trenton's Assessment from Harsha

We are slowly getting closer to our start date at Harsha Cognitive Center. Unfortunately, the process is taking so long because of insurance. Insurance dictates everything. .....which is such a shame! Anyway, I did receive Trenton's treatment plan along with their summary from Trenton's evaluation.

A prelininary VB-MAPP (Verbal Behavior- Milestone Assessment and Placement Program) was completed on Trenton.  On the milestones assessment Trenton had an overall score of 26.5. This means he is primarily a level one learner with some skills in level 2 and 3. Level one is for 0-18 months old......depressing! DEPRESSING!!!

Trenton demonstrated strong skills in level 1 with tact, visual perception, and independent play. He was able to say letters, colors, and games with some prompting. He was noted to have several prompted words. While these skills were strong, he did not demonstrate any skills in level 1 listener response or imitation. When attempts were made to assess these areas, Trenton would not respond to the speaker or would walk away. Trenton demonstrated emerging tact, play and linguistic skills in level 2 and independent play and reading skills in level 3.

Trenton scored 61/72 on the VB-MAPP barriers assessment indicating he still has substantial barriers to being able to communicate and interact with others effectively. The score that Trenton needed to score was a 0. Again....DEPRESSING!

The results also showed that Trenton has huge deficits that require mastery for functional living. A few examples are tolerating situations related to safety and health, following directions for safety, completing daily living skills such as potty training, etc.

This tells me that he needs WAY more help than he is getting. Unfortunately, it means a lot more money is going to have to go out our pocket for Trenton. How can we afford it? We can't! But how can we not afford it when it means his future?? Many families who have a child like Trenton end up taking out a second mortgage...one way or the other...we will afford it! He will be 4 years old in August but has the mind capacity of a 0-18 month old....but has the speed of an Olympic runner...... and is getting harder to handle by the week because he needs a lot more help than he has been receiving. We will afford it! As Trenton gets older, a lot of things are getting harder. Just stop and think about how your 0-18 month old child is? They can't do hardly anything for themselves. That is Trenton but as he gets older, his body is growing and getting stronger but his mind is not.

I wish every school district in every town across America could offer children with autism what Harsha is going to offer Trenton. How can any child with autism get anything out of school if they are a level 1 learner? One has to start at the bottom and work up. Sometimes it takes many years of working at the bottom. With or without disabilities everyone learns at their own pace.

In a CPDU class that I took on autism one time, the speaker said, "Unless you achieve mastering joint attention with an autistic person...then you are not helping the child at all." So true! Trenton's assessment says it all....a level 1 learner does not display joint attention. We have to achieve this before a regualar school district classroom is possible. I pray in the next two years, Trenton can master achieving joint attention along with many other areas, so he can be successful in school.

I have a good feeling about Harsha and I think it  will the best thing for Trenton by far!

Wednesday, July 9, 2014

Nap

After a bad night and a 3:45 AM start to the day, Trenton took a nap in between therapies in the car!

Tuesday, July 8, 2014

Missing Autistic Boy Found Dead

Like I said a few post ago....there is always a weekly child in the news with autism that is missing from wandering off. Here is the link to this weeks story

http://www.kctv5.com/story/25967440/boy-with-autism-wanders-away-from-home

http://fox4kc.com/2014/07/08/boy-with-autism-missing-in-cass-county/

Unfortunately, this family did not have a good ending. Let's all be thankful our Trenton was found safe and sound. Let's say a little prayer for this family tonight..they will need lots of prayers for strength to get through this time and the rest of their lives.

Autsim & Wandering

AUTISM & WANDERING
Similar to wandering behaviors in the Alzheimer’s community, wandering and elopement behaviors in children and adults with autism have led to countless tragedies across the country.
In 2011, a study conducted by the Interactive Autism Network through the Kennedy Krieger Institute found that roughly half, or 49%, of children with autism attempt to elope from a safe environment, a rate nearly four times higher than their unaffected siblings. 

It also found that more than one third of children with autism who wander/elope are never or rarely able to communicate their name, address, or phone number. Two in three parents of elopers reported their missing children had a “close call” with a traffic injury. Thirty-two percent of parents reported a “close call” with a possible drowning. Wandering was also ranked among the most stressful autism behaviors by 58% of parents of elopers. Half of families with elopers report they had never received advice or guidance about elopement from a professional.

According to the National Autism Association, in 2009, 2010, and 2011, accidental drowning accounted for 91% total U.S. deaths reported in children with autism ages 14 and younger subsequent to wandering/elopement. Sixty-eight percent of these deaths happened in a nearby pond, lake, creek or river. 

There are various reasons someone with autism may wander. More often than not, he/she will wander to something of interest, especially water, or away from something that is bothersome, such as uncomfortable noise or bright lights. 

Outdoor gatherings present a unique challenge since it is often assumed there are more eyes on the child or adult with autism. However, heavy distractions coupled with an over-stimulating setting can lead to a child or adult wandering off without notice. 

Children and adults with autism wander from all types of settings, such as educational, therapeutic, residential, camp programs, outdoor, public places, and home settings, including relatives and babysitters’ homes. 

Wandering and elopement tend to increase in warmer months, especially in mid-section areas of the US where home layouts and routines are adapted to accommodate changing weather. Persons with autism are also more likely to play outside or attend summer or day camps during this time. 


It's no wonder that more than half of parents reported that wandering is the most (or among the most) stressful ASD behavior, ahead of self-injury, rigidity, aggression, and meltdowns. Meanwhile, 62 percent said fear of their child eloping stopped them from attending or enjoying activities outside the home, increasing their social isolation; not surprisingly, 40 percent of these already exhausted parents said they lost sleep while worrying about a potential "escape" during the night.

So why do ASD children wander? While researchers still aren't sure, parents ranked these as their child's top five possible motivations:

1. He/she simply enjoys running and exploring (54 percent)
2. He/she is heading to a favorite place he enjoys such as a park (36 percent)
3. He/she is trying to escape an anxious situation like demands at school (33 percent)
4. He/she is pursuing a special topic of interest, i.e. when a child fascinated by trains heads for the train tracks (31 percent)
5. He/she is trying to escape uncomfortable sensory stimuli such as loud noise (27 percent)

http://www.childmind.org/en/posts/articles/2013-5-20-three-autistic-childrens-drownings-wandering 

Monday, July 7, 2014

Andrew's Issues & Trenton's Triumphs!

As always, autism is two steps forward and five back. Andrew has taken a few steps back the past few days. Just when I was starting to feel a little better about him he went spiraling downhill. He has recently started to dart away while outside. He was fairly good to stay close by but he has proven that if he gets something on his mind and can't get it off...he will just take off. He doesn't care if no one is by him either. For example, this morning while playing outside with his cousin, Lincoln, he didn't pay attention to Lincoln at all. All Andrew had on his mind was to run away. In general, Andrew's focus on other children seems to be less than it was 6 months ago.

Andrew also had a very difficult Sunday morning. Andrew has always had a harder time than Trenton with transitioning off of the normal schedule. This past Sunday, Andrew's Sunday School class was combined with Trenton's class. I am the Sunday School teacher for Trenton's age. Therefore, I had both of my kids in class. Let's just say that Andrew did not like being in a different class. He cried, screamed and could not get off of his mind the fact that he was in a different class. He did not pay attention to any of the kids in the classroom. He had the autistic meltdown look going on in his eyes that I have seen in Trenton countless times.  My mom stepped into the class because everyone in the whole building could hear Andrew's meltdown. Trenton could not filter out Andrew's cries, therefore, he got upset and wanted away from Andrew. My parents took both boys out of the class for me and they battled their issues while I finished the class. When Sunday School was over it was time for worship and Andrew could not calm down. He simply had a bad day. Therefore, we left church early...no other choice.

It did not surprise me that Andrew could not calm down on Sunday. The last few days his OCD has been bad and he has not been able to "let go" of issues very easily.

Andrew has been extremely sensitive to water again. He will sit in the bathtub but screams if water splashes on his skin. He screams if I try to wash him. He will stand in the pool but does not like it if water is splashed on him in the pool. He is getting to where he wants to be held all the time again and won't walk on his own unless something is on his mind and then he will just take off in a dead run.

Andrew has to be constantly engaged with or he has no clue what to do....just like Trenton.

On the flip side, Trenton is still having some fantastic eye contact. It's been great for over a week now. I would estimate him looking me in the eye around ten times a day lately. AND I SEE HIM!!!  It's not a blank look...I SEE TRENTON!!!! AND IT FEELS AMAZING!!!!!!!!!!!!!!!!
We have been practicing I LOVE YOU again. Sometimes I will say "I Love" and Trenton will look right at me, grin, and say "You". Nothing...nothing can tell you how great that feels!
I am fairly confident I heard him spontaneously say, "Mommy" the other night. I know he did. I heard his steps behind me and a quiet voice say something that sounded like "Mommy". I just pray his good phase keeps up because I am loving it and I know Trenton is too!!!!!!!!

Trenton's best accomplishment the past few days happened today. When given three choices for breakfast on his choice board which looked like this..

He looked at me and said "waffle." I fixed him a waffle and he ate the whole thing!!! Way to go Trenton!!

Saturday, July 5, 2014

Pictures from the 4th

Here are a few pictures before my life turned upside down for 10 plus minutes at the park. This is the bounce house where he was found at. The pictures are before the episode occurred.








Here are a few pictures of the boys that I tried to take before we left for the park.



 I have well over 30 pictures of Trenton and they all look like the following picture. It is so difficult for him to look at a camera.


Friday, July 4, 2014

A 4th I Will Never Forget

This was a 4th of July that I WILL NEVER FORGET!

A HUGE concern of parents of autistic children that are similar to Trenton is the fact that they wander away. I am always thinking 10 steps ahead of Trenton. I truly do believe that I was born to be an autism mom. To begin with the past two days have been a huge indicator of how much my parents sacrifice for Tim, Trenton, Andrew, and myself. All of my family is out of town at Uncle Brent's house.  The last two days I have had more of a realization of what it would be like to not live by my family that helps and it is impossible! An autism family has to live by family that will bend over backwards.

Today, Tim and I took the boys to the park. There was a lot more people than I imagined but things were going fairly smooth for the first 20 minutes. The boys had fun on a bounce house and their smiles were priceless. Andrew wanted something different. Tim took him over to the blow up maze. The blow up maze was the size of a small house, but not as tall. When Trenton was ready to move on to the next thing, I took him where Daddy and Andrew were.

 Tim was standing on the north side of the maze where you enter in. Trenton wanted to go in so I let him. However, I immediately got uneasy when I realized that it was impossible to see him the whole time. Tim stayed on the north end of the maze while I walked the maze over and over while I constantly said Trenton's name. I immediately realized that the maze was not "autism proof". I ran over to Tim and said that this maze was toddler proof but not autism proof. I think he thought I was crazy but I am around Trenton way more than Daddy is and have done far more research to know what is safe for him at his severity level and what is not.

The maze was set up where  a child like Trenton could lift up the bottom even though it would have been difficult and get out. Many normal kids would not think of that because the maze would be extremely fun to them. Anyway, I made my rounds walking around the maze constantly. I was constantly yelling up at Tim on the north side asking if he saw him. All the other parents were standing on the north end by Tim but, of course, that is what parents of normal kids do.....they relax and just watch. There can not be that with Trenton.

 I was constantly doing everything I could to make sure I could see him while I was pacing around the maze. There went several seconds and I could not see Trenton. I was yelling at Tim asking if he was at the north side with him but he didn't hear me. I ran up to Tim and said, "I don't see Trenton... you have to help me look." Andrew came running out of the maze but, no Trenton. I started yelling his name and asking the kids in the maze if there was a little blonde haired boy with a red and blue stripe shirt on in the maze. No child could answer me. I ran in the maze tearing it up in a state of panic. I never realized that ones mouth could go from normal to straight cottonmouth in a matter of seconds. My mouth was so dry I couldn't even talk right right. I soon realized I couldn't breathe. I tore up the maze in a state of panic! The second I realized that Trenton was not in it I yelled at Tim to go... run... and look. Tim took off running to the west end. I was running up to every person I knew telling them that Trenton was missing. I was yelling at strangers. I kept saying, "My son is missing! He has autism. Help me." I didn't know whether to run to the pond that was so close by or  to run to every ride in the park. I kept scanning the whole crowd yelling as I was running up to the various bounce houses.  I needed someone with a huge intercom getting everyone in the park on alert. After ten minutes of hell and right as I was turning to run to the pond, I saw Trenton being carried across the park with Tim. I immediately dropped in tears. I will NEVER forget what it felt like to look at him for the first time after he went missing. The good Lord heard the most fervent thankful prayer that second that He has ever heard!
I am very thankful that he did not run to the pond which was very close by but instead ran clear across to the opposite end of the park area to the original bounce house. Although I spoke to a person who ran to this bounce house before Tim and he did not see Trenton. This leads me to believe that Trenton went somewhere first before he went to the original bounce house which is very scary.

I took Trenton's hand and went to the van.

If you Google autism news weekly, it is almost a guarantee you see a new case of a missing child with autism. It happens often with these children and it is scary. I live in fear for this.
The following is from an ABC article



Nearly half of all children with autism will run away and potentially go missing at least once before their 17th birthday, according to a study by the American Academy of Pediatrics. Of those who run away, what clinicians call "eloping," many will be found dead. 


The numbers alone present a challenge for law enforcement authorities, who regularly rank searches for missing children among the most difficult work they do. 

But finding children with autism -- who shirk when their names are called out, who run away at the sound of police sirens, who are afraid of the dogs sent to find them, and who naturally are comforted by burrowing and hiding -- makes a hard job even harder, investigators say. 

One in 50 children is diagnosed annually with autism, a spectrum of neurodevelopment disorders marked by problems with social interaction and communication, according to data from the Centers for Disease Control and Prevention in Atlanta. As the number of children who are diagnosed increases, so too does the number of kids who run off, leaving rescuers to learn quickly how best to handle a unique set of challenges. 

 On the one hand, autistic children are more likely to run away than unaffected children. When they do runaway, they are more likely to die than unaffected children. And more often than not, 91 percent of the time, those deaths are a result of drowning


Trenton either got out one of two ways. He either lifted up the bottom of the maze and crawled out with his enormous amount of strength he has for a 4 year old when I was pacing the other side......Or he ran out of the front entrance where Daddy was when Daddy was looking around and not looking at the maze. Now, Trenton is super fast...like way fast when he has his mind on something. Trenton did not have dirt on his hands, knees, or clothes which makes me think he could have ran out the front entrance following other kids. If he was in the maze and suddenly remembered the fun he was having on the first bounce house then he is faster than anything you have ever seen. I have seen this way too many times!!  Another theory is that he was in the maze and didn't like it. Therefore he wanted out and he can't say "mom" or he can't say "help" because he is non-verbal so he lifted the side up when I was on the other side and ran. 

Either way it happened does not matter. What matters is he wandered off and we had a happy ending this time.

I don't care what I look like when I am out with Trenton. I may look like a stressed out mother but everyone has to be like this or situations like we had today will start happening. Next time we might not have a happy ending. What happened today justifies what I said a week or two ago in a post about how it takes 3 plus people to take Trenton and Andrew out in public. Trenton needs at least two people who are always ten steps ahead  at all times!  There is no relaxed-down time with our kids. Nothing is fun....nothing is relaxing...ITS ALL ABOUT STRESS AND BEING ON HIGH ALERT!!

I guarantee I don't sleep a wink tonight. I have not thought about anything else today.....

Thursday, July 3, 2014

Jamie

Trenton and I managed to meet up with Jamie Weaver, her son Logan, who has autism, and Jamie's parents for a very short time yesterday. Jamie is another fantastic autism mom!! Jamie grew up in the same town I did and graduated high school with my brother, Brian. Her mom was my hair stylist growing up. I would have never dreamed way back then that our lives would bring us back together through autism.


Trenton thought it was funny that Logan was walking around bouncing a ball. They even tried to play catch for a few seconds. These two boys interacted well for a few minutes and I loved it!!