Tuesday, April 29, 2014

Autism What We Know and What We Don't Know Yet- Video

http://www.ted.com/talks/wendy_chung_autism_what_we_know_and_what_we_don_t_know_yet

 A few people informed me of this video today. It is very interesting to hear what she has to say.

Autism & Genetics

The past few months I have researched and spent every free minute that I had on ensuring that I know the special education laws like the back of my own hand. Now, since I know my education in that area, I am going to spend my time researching the genetic side of autism. It is obvious that genetics plays a huge role in our situation. Two kids. Both boys. Both with autism.

Since Trenton's diagnosis, I have found out that if your first born has autism, your next child only has a 7% higher risk to develop autism compared to a child that is born into a family with no children with autism. If you second child developed autism, then your future children have a 20-30% more chance of having autism.

I have also found in my research that you are more than likely to have a child with autism if ADD, ADHD, OCD, and schizophrenia is in the family. It has been a while but I have posted all of this information before.

The doctor that diagnosed Andrew talked to us a lot about the role of genetics. He said that the X Chromosome from the male determines not only the sex but also the developmental factor of your child. Scientist and researchers are linking this to the genetic side of autism in come cases.

Moreover, the new information that I am finding is very interesting and educational.  From time to time, I will focus on educating you on the genetics side of autism as I gather and understand the information myself.

The following is some very common information that I keep on coming across.


A major finding to emerge is that many cases of autism are caused by rare genetic mutations, which can be recognized currently in 15-20 per cent of cases and this is likely to increase as more studies are completed.

Inherited mutations
Some of the time, these mutations are inherited from the parents, but in many cases they are associated with new mutations – ones that arose de novo (afresh) in the generation of sperm or egg cells.

These de novo mutations, which are not carried by the parents, can give rise to sporadic cases of autism, with a genetic cause but no family history. It is now possible to screen for many of these mutations and to advise people about recurrence risks.

This is hugely important to couples with a child with ASD who frequently overestimate their risk of having another child with ASD.

Often couples choose not to have more children but if a child has been affected by a de novo mutation, the risk of another child being affected is no higher than the general population.

It is also clear that some families carry very high genetic risks for ASD, due to inherited mutations. 

Another area of my research I will focus on is the area that autism is more common in boys. The following explains why very well.

 According to a team of geneticists in the U.S. and Switzerland, it all boils down to what’s called the “female protective model.” This suggests that girls have a higher tolerance for harmful genetic mutations and therefore require a larger number of them than boys to reach the diagnostic threshold of a developmental disorder. With identical genetic mutations, then, a boy could show symptoms of ASD while a girl could show none.
But because the female mutation threshold is higher, when girls are diagnosed with ASD, they tend to fall on the more severe end of the spectrum.
Researchers believe the same dynamic could explain why more boys are diagnosed with ADHD, intellectual disabilities and schizophrenia. The findings were published Thursday in the American Journal of Human Genetics.

All in the Genes

Geneticists analyzed DNA samples from 16,000 boys and girls with neurodevelopmental disorders. They found that, on average, females diagnosed with ASD had 1.3 to 3 times more harmful genetic alterations than males diagnosed with the disorder.

The findings suggest that as the male brain develops, smaller and more subtle genetic changes can trigger autism spectrum disorders. Female brains require a greater number or severity of mutations before showing symptoms, so their symptoms tend to be worse.


Monday, April 28, 2014

Until All the Pieces Fit


Trenton's music therapist made a beautiful song with pictures of children who suffer from autism. Trenton and Andrew's pictures are in this video. I have yet to watch it without crying like a baby.


https://www.youtube.com/watch?v=HelGY9y-qNc


Hunger Pains?

Here is just another small story of what Trenton and I go through....

A few weeks ago he woke up in the night crying. Obviously it is not unusual for him to wake up in the night but the way he was crying was different. It was not a meltdown. He was simply crying hard with huge tears rolling down his face while his smile stayed upside down. Instantly, I grab his iPad to try to figure out what was wrong. However, he had nothing to do with the iPad for communication. I was persistent and kept on trying to get him to tell me or show me on his iPad why he was crying. I showed him the word"hurt", "upset", "sick", "tired" to just try to get him to tell me at least one word on what was making him upset. I simply got nothing out of him except for more tears.

As the time went on, he was crying harder and his behavior was on the verge of turning into a meltdown. All of a sudden he put his hand on his stomach. Of course, I figured his stomach hurt and he was having gas pains. I showed him "stomach hurt" on his iPad and this seemed to make him more mad. After 50 minutes of this I got the brilliant idea of giving him a snack. My conclusion, since he put his hand on his stomach, was that maybe his stomach was growling  and he did not know what it was and how to make his stomach stop growling. Therefore, I gave him his favorite snack. He ate it and wanted more. I gave him more snacks and he seemed much better! MUCH BETTER!!! After he was done eating, he grabbed his blankets, grabbed my hand, and led me into his bedroom where he want to lay with me until he fell asleep.

I am sure we all have had our stomachs growl and hurt because we were hungry. Can you imagine having that feeling and not knowing what it was and why your stomach was feeling that way? I can not fathom it! It's very gut wrenching knowing your child's life is like this.

Favorite picture from first pitch

This is my favorite picture from the baseball game! Look at his arm! Way to go Andrew!!!!

The photographer from the local newspaper took the picture at the perfect time!!


Saturday, April 26, 2014

Autism Baseball Game & Walk

The first annual walk for autism in Flora was today. I believe it was a success but for Trenton and I it was nothing but more stress, more sensory overload, and more fuel to the fire. 80% of my whole day was managing Trenton's behavior.....like always.  However, the highlight of the day for us was the first annual autism baseball game this morning.

Coach Uncle Brian Tackitt had Trenton and Andrew throw out the first pitch. It will be one of my most amazing memories that I will carry with me during this life. It is a good thing I wore my sunglasses because behind my glasses was two eyes full of tears. They were tears of joy and tears of sorrow.
I was so ecstatic when they both walked out on the field, especially for Trenton! However, it was very humbling knowing that this might be the closest they ever get to playing sports. They have much bigger obstacles in their life. I am very blessed that their Uncle Brian wanted them to be a part of the autism game! Thanks Uncle Brian!


Uncle Brian showing and telling Andrew how to throw the ball.
 He did it!!! Good Job Andrew!!!!!!!!!!
 That was one good throw Little A!
 Now it is Trenton's turn!

 Instead of throwing, he walked the ball to the catcher. Good Job Trenton!!!!!!!!!!!!


 
 The boys with the whole team!


 Taking a wagon ride at the game.

 Trenton and Mommy had to leave the game early. Trenton lasted one hour and that was good enough!

In the afternoon, it was time for the walk! Of course, Trenton just wanted to wander away. Again, not one minute of the walk was relaxing and fun. In fact, Trenton and I did not even get to particpate in the actual walk around the park for autism. Trenton was having a meltdown. I watched the walk from a distance and left immediately after. Its a sad day when you can't even walk for autism because of your child.

Emily and I before the walk!  She is one of Mommy's special friends.
 The boys had fun in the bounce house.


 Trenton loved Blue Clue's!



 Watching the walk from a far because I was doing what I do best....managing a meltdown. Of course, Trenton had to be the worse behaved child with autism there... but I am getting use to it.
 I really wanted lots of pictures of all the family who came from several different counties to support us. That did not happen. Lots of things never happen due to autism.

Thanks so much to all of our family, church family, friends, and the community as a whole who came out today. It means more than you know! I barely got to speak to anyone because of Trenton's behaviors but just knowing you were there for my boys, means the world!

Thursday, April 24, 2014

Hurricane Trenton- Category 5

I am very surprised that I have not pulled out every strand of hair that I have on my head. This whole life makes me want to pull my hair out every single minute!
Trenton had a doctor appointment first thing this morning at Cardinal Glennon. I had two choices and they were to either get brave and stay the night at my brothers the night before or be on the road by 6 AM after a sleepless night. I chose to stay the night at my brother's house.  I have not done that since October. The last time I did it was a disaster because Trenton wanted to go home at night and do his normal routine.

We arrived at Uncle Brent's house around 4:00 PM and the evening went fairly well for Trenton, Nana, Andrew, and myself. Andrew was extremely timid going into Brent's house. He had a moment at one time in the evening where he got scared and stood in the corner for a few minutes. Trenton was perfectly happy until he got tired. He fussed a lot and grabbed my hand repeatedly and took me to the front door. This is his way of telling me he wanted to go home. However, we battled through it and finally went to sleep and actually slept!!

The next morning is when everything went down hill rather quickly and turned into a day that I wished never happened. While Trenton and I went to the doctor, Nana, Brent, and Andrew went to the zoo. Trenton was very well behaved in the waiting room. While in the waiting room, I was thinking that our day just might happen to be a good one. Trenton's name was called back. I grabbed his hand and smiled at the nurse. She smiled at Trenton and said with a cheerful voice, "Hi Trenton. How are you?".
To no surprise, Trenton ignores her and keeps on looking at the ground. The nurse said again, "Hi Trenton."
Again, no response. The nurse looks at me and had the audacity to say, "He isn't even looking at me and appears to be ignoring me."

My blood started boiling while my blood pressure went sky rocket high at this point.
I looked at her with one eye brow raised and said in a stern motherly voice, "He has autism."

Before I could say anything else she starts going on and on how well behaved he was for having autism. Just like a light switch, she no more than said that when Trenton started going ballistic. Trenton continued to scream and have a meltdown for the whole entire next hour. It was impossible for Trenton's doctor and I to have a conversation. Trenton was in a full blown autistic meltdown.( If you want to know what he does during these kinds of meltdowns, watch my meltdown post video.)

Approximately every ten minutes the doctor kept saying, "This is so sad. He is so upset. Will he stop soon?"

The whole appointment felt rushed and I probably only heard half the information that she told me. Nonetheless, we survived and eventually found ourselves walking back to the car.

I once again tried to be a normal mom and thought I would try the zoo just to see how Trenton would do since we had to meet Nana and Andrew there anyway. I managed to walk up to the zoo with Trenton in a normal fashion. Before I knew what was taking place, Tropical Storm Trenton was about to become a category 5 hurricane in a matter of minutes. I managed to meet up with my family but they were stressed beyond the imaginable with Andrew. Andrew was totally oblivious to everything around him and only wanted to run away. We soon took shelter in the children's zoo where it is a closed in area with goats and roosters. Once again, Andrew paid no attention to the animals. Trenton admired the goats for a few minutes and then all he wanted to do was try to climb over the gate and into places that he was not allowed. Every time I pulled him down, he kicked me and cried bloody murder. He would fall to the ground crying. I would pick him up and ask him over and over to please work with me but he went straight into meltdown mode.
I look at Nana who is doing nothing but battling Andrew over and over.  Our only hope was to leave the children's zoo and see if we could find something else to capture their attention. Regrettable, nothing captured Trenton's attention because he was too far gone into an autistic meltdown once again.

Before I knew what was taking place, he ran up to a stand that sells nothing but stuffed animals. Of course, Trenton wanted each and every one of the them.We bought one hoping it would satisfy him but it didn't. Here I was in the middle of the zoo, trying to calm him down with everyone walking by staring at us in disbelief. Nana and Brent tried to take Andrew to ride the train. I was doing nothing but trying to hold a child that was kicking me, screaming, crying, dropping to the ground, hitting himself in the head, and trying to run away. I had enough at this point. I picked him up kicking, screaming, hitting me, while trying to carry my diaper bag and started our long walk out of the zoo and to our car. We had to walk past the stuffed animals again..... and before I knew it I found myself throwing money at the lady working and telling her to hurry up and give me an elephant. Trenton gets free from my arms, stuffed animals are flying in the air, every passerby is standing there in dismay at what they are watching and I have sweat beads dripping from my body in 70 degree weather.
I calming but sternly say, "Hurry please." She hands us the elephant and the meltdown gets worse. With tears in my eyes I pick him up again, carrying out my precious child in a full blown meltdown, and headed to the car. No words can describe how I felt walking to the car. We had made a scene that was a true example of autism.

I was at the zoo for one hour and nothing was enjoyable. Once again it was only added stress. I give up!  Not only am I done with holidays but I am done trying to do something small like what I tried today. Trenton simply could not handle anything today.

It left me only more depressed to watch the other children that were my boys age there having fun, looking around at their environment, communicating with their parents, walking alongside their parents, etc,etc,etc. Everything that we can't do and will not be able to do for many many years. Therefore, I AM DONE! DONE! No longer am I trying anything. I have an obligation to try to participate in a walk for autism this Saturday but as soon as Trenton and Andrew have had enough, I am leaving. It is not worth it! Not worth putting them through it and not worth the stress.

On the way home today I told my mom, "I am content to stay home in my prison cell and only getting out for church and  therapy. I don't have to watch "normal" life if I stay in my prison cell. The boys don't have to be tortured if we stay in our prison cell. It's sad when you look forward to therapy because those are the times your children are the happiest and I am surrounded by people who care and understand."

I took a few pictures Wednesday of the boys playing outside in the yard. They were so happy. I love it when they are happy.




 The few calm moments we had, I took a few snapshots.
 Uncle Brent trying to get Andrew to pet the goat.


 After a morning of nothing but meltdowns, he slept on the way home.
 Andrew ate on the way home.

Tuesday, April 22, 2014

Compression Garments

This is week two of Trenton wearing his new compression garments. These garments fit closely to the body, it delivers a “portable hug” called deep pressure touch stimulation (DPTS).   For many patients this type of therapy product helps them stay calm and focused by stimulating their muscles and joints though deep pressure.
Numerous times throughout the day, Trenton needs deep pressure and deep pressure hugs. The garments will also help him "feel his body" which he has a difficult time feeling his body due to his sensory issues. When Trenton is having a hard time feeling his body, he becomes very anxious, hyper, and won't stop pacing back and forth. Again, having the tight fitting clothes will help him with this issue. 
So far, he loves the garments. I'm not sure it is going to help him stay calm but I think it will help him feel more secure. As long as it helps him in any way, I will buy them! 
The down side to this is the fact that it is summer and he has to wear this under his clothes.

Here is the cutie showing off his new compression garments.

 

Monday, April 21, 2014

Motor Delays

Motor deficits are not listed as part of the diagnostic criteria for ASD, individuals with these disorders tend to exhibit motor skill deficiencies as well as differences in motor development. Infants with ASD may exhibit hypotonia. In addition, delays may exist in the acquisition of motor milestones and fundamental motor skills. Differences in skills such as gait and manual dexterity persist into childhood.
 With that said, my boys differed greatly with their motor deficits. Trenton was not delayed in his motor skills at first. Trenton was walking at 10 months and running at 10 1/2 months. He learned to jump before he was a year old. Andrew, on the other hand, is a few weeks away from being 2 1/2 years old and still can not jump. We have been working with this for a long time. Neither boy can pedal. Sad to say, I am not sure if they will be able to do this anytime soon. At one point, Trenton was not delayed on his motor skills but he is now. Andrew has always been delayed.

Daddy had Andrew outside trying to practice the other day but it is just very difficult for him.


Sunday, April 20, 2014

An Autism Easter

It's 6 AM and you wake up on the couch with your body hanging half off of it and your precious 3 1/2 year old with five blankets, a sippy cup, and a few stuffed animals around him is on the couch with you. You have no idea what time it was when you child's body let him go back to sleep after another distasteful night. When he finally closed his precious, beautiful eyes to rest for a few hours, you simply don't have the strength to turn and see what time it is. Instead, you close your eyes and are asleep instantly.

You awake and it is Easter Sunday. Another time where normal families do the fun, relaxing traditions of coloring eggs and egg hunts. You want more than anything for your children to experience those kind of normal traditions that you got to experience as a child. However, you know the chances of having a relaxing holiday is non-existent in the autism world. Instead, they become the days you dread the most.

I have heard numerous time that it is harder on the parents when you have disabled children. I believe this to be true on some days.  When my sleep deprived body woke up, I had hopes of having a good day. My hopes went down the drain very quickly.

Today was the first day in a long time that Trenton was unable to attend church. He had a great morning. It was all going smoothly until he dropped one of his new animal figurines that he got in his Easter basket in the car right when we pulled up to church. If Trenton drops an object while in his car seat, it sends him into a frenzy.  It doesn't matter if you are driving, you have to pull over, get out of your car, and pick up his object that he dropped or it is a huge meltdown. Today, it was a huge meltdown. He got so upset when he dropped his new animal and he could not calm down for almost an hour later. Nana took Trenton home because he was not calming down at church. Mommy stayed behind with Andrew because I can rarely attend night church due to the boys.

At the end of church when Andrew and Mommy was walking out to the car, Andrew saw a lawn mower. Andrew calls a lawnmower a tractor.  He starts screaming, "tractor" over and over and over!!! Well, if Andrew has something on his mind, he has to complete the task that is in his mind or it is a huge tantrum that will continue for over an hour. Andrew wanted to ride the lawnmower that he saw but we obviously could not. Therefore, his tantrum started. He kicked me, hit me, and threw his body around where I could not get him into his car seat. He stiffened his body in a rage of madness. Its behavior that is becoming to norm to me......unfortunately. He had the same autistic meltdown look through his eyes that Trenton has when he is having one. For the majority of neurotypical children, they would clam down and listen to their mother trying to tell them that he could not ride that lawnmower but after lunch you can ride the 4-wheeler. However, if you have an autistic brain......there is NOTHING that will calm the child down. Andrew cried all the way home and until he got his 4-wheeler ride.

After lunch, I tried to have an Easter egg hunt. The egg hunt left a lot to be desired let me tell you. Andrew was oblivious to any eggs. I tried to show him over and over what to do but he was simply in his own world. The egg could have been 1 inch from him but he just stood there. Trenton ran and grabbed a few but he was just obsessed with opening the egg up and not putting the egg in his basket. After Trenton opened up a few eggs, he was in his own world. What remained in our world was a depressed special needs mother in tears asking herself over and over, "why do I even try?"

On Saturday, Nana and I tried to color eggs with the boys. Coloring eggs with the boys was nothing but disappointing. The boys would drop an egg in with guidance. However, they immediately wanted to get the egg out of the dye and smash the egg. They both have sensory issues where they crave to squish food items between their fingers. Squishing food between their fingers meets a tactile sensory problem that they both have. I boiled 13 eggs and I think 5 survived.

No one was in a good mood all day and that was including Mommy! I cried more today than I have in  awhile. I cried for Andrew...I cried for Trenton....I cried for my family....I cried for the normal life that I want my boys to so desperately have.
So yes....on some days it is harder emotionally on the parents than the children. I think these small holidays are going to be like the big holidays where we refuse to participate in anything that is normal!

Andrew rarely looks and smiles at the camera anymore. He was so cute dressed in his cars hat and tshirt but he would not smile at the camera....only a blank look.


 He loves his 4-wheelers!
Coloring eggs


 I wanted to try to get some good Easter pictures today. The below picture says a thousand words. Seriously...look at the boys!!! They are in their own world!!!! We took numerous pictures today and they are all the same...
 This 4 generation picture turned out the best. This picture captures Andrew looking at the camera.

 Trenton received a gift that was too big for his basket.....a mailbox! Trenton loves mailboxes.
 Inside the mailbox was a..........
 Chicken! The boys got chickens for Easter!
 The boys loved the chicken!


 He has to have his fixated obsession objects in his hands at all times.