Friday, April 29, 2016

Mother's Day Invite

Andrew was excited to give me my invitation for a Mother's Day party at his preschool! I can't wait!!

Thursday, April 28, 2016

Why are you following me?

I posted a few weeks ago how Trenton said a sentence in the middle of his noises. Well today his coaches said he said a sentence again! He turned around to one of his coaches and said, "Why are you following me?"
Do you know how excited and proud I am?!?!?!?!?!?!?!?!?!?!!?!?!?!?
Many individuals with autism live their life and will say words intermittently their whole life. This is the second big thing he has said in one month!!!!!
Way to go T-man!


A Work in Progress

I am reading this book right now.
I have read numerous books about autism and how to help your child, etc. I have also read countless family stories about their life with autism. Each and every book that I have read has helped me in many ways.
This book, however, is the BEST educational  book on autism. The authors did a tremendous job in writing everything in layman's terms.  My degree is in special education which has help me tremendously with my own children. I believe I have had people doubt me...thinking that I was just exaggerating or overacting on the depth of help the boys need, especially Trenton.
I am certain I have had people judge me when I have said that it takes only one time to not follow through on a procedure with Trenton for it to totally mess him up and never "get" what I am working with him on. 
The importance of CONSISTENCY is beyond critical with kids on the spectrum!! Just one time....only once for someone else to do something different and the child  will not follow through on the procedure. I haven't always been consistent myself. It is hard living 24/7 with autism. However, this book was the boost that I needed to refresh my mind!

The reason why I love this book is it is everything that I have said since Trenton got diagnosed. EVERYTHING! So....I suggest this read to anyone that has ever questioned why I do what I do!!!
 I am only on page 57 and have lots more to read but that is just how truthful this book is! LOVE IT!

Since it is just me raising the boys now, I have changed a few things and it seems to really be working with the boys. I am only away from them a few hours a week when they are with their father. It is amazing the difference I have seen in the consistency every day. Hence, this is why parents need to be involved in therapies, etc. It all carries over to the home environment.

Now, I will soon begin a few new task. Trenton's potty training got all messed up in December. TOTALLY MESSED UP! I am still in the process of getting it all together with them and will be starting the new process at home soon!

The importance of consistency is really hitting hard lately. Trenton will be 6 this summer and his early intervention years are almost gone. The type of autism that he has requires 24/7 care. Many families have 24/7 hired care for their child with severe autism. Sadly, they can't have any down time because that is when errors creep in and you lose progress.
I am not wealthy enough to have the around the clock help with Trenton. It's sad that someone's life is at stake because of money but sadly that is what most autism families deal with. However, I give him all that I can and do my best to stay consistent with everything, especially now since it is just me at home.

The key to helping children like Trenton and Andrew is changing their behavior. The more we go on without changing their behavior, the harder it is to change a person's behavior. That is with everyone but is especially hard for kids on the spectrum which is why the early years before the age of six are so crucial.
I am starting to panic in many areas with Trenton. He is getting older and we have to get a handle on many things with him before it is too late.

I watched a really good Lifetime movie the other day about a family with a daughter with autism. This family didn't get their daughter help till she was four and the mother blamed herself because her daughter was low functioning, she reminded me of Trenton. I don't ever want to live with blaming myself....I know I won't because I am doing everything that I can. Would it be easier to sit on the couch and not stress myself out fighting him with potty training and fighting him with not climbing on top of the fridge and counter tops....and fighting him with not constantly turning on water from the sinks, etc.....oh heck yes. My life would be so much easier to just sit back and let him destroy the house with his out of control behavior. .......but how is that helping him. Sadly, parents can't relax and enjoy the fun things in life while raising kids on the spectrum, especially the lower functioning end. It is 24/7 work and no down time. When you are dealing with autism, you can't afford to take one hour break....it's not the normal family life. It's not the normal play with my kids kind of day....it is work and nothing but work!

Wednesday, April 27, 2016

The Hardest Part

Here is one of my latest articles on autismawareness.com

https://autismawareness.com/the-hardest-part/

The Importance of Early Intervention

I've been asked before if I think that there is truth in the fact that earlier the better  for an autism diagnosis. My answer is most definitely!! Do not wait parents! Trust your gut and find out what is going on because if it is autism, the earlier the better. In fact, it can mean the difference between a functional life and a life full of dependency on other people.
The earlier you intervene in your child's life, the more likely you can help your child in the area's of speech, behavior, social, and reduce all autism symptoms.

In neurotypical children the early child development sets the foundation for lifelong learning, behavior, and health. The experiences children have in early childhood shape the brain and the child’s capacity to learn, to get along with others, and to respond to daily stresses and challenges. The same holds true to children with autism and even more so!

The most information learned occurs between birth and the age of three, during this time humans develop more quickly and rapidly than they would at any other point in their life. Love, affection, encouragement and mental stimulation aid in development. At this time in life, the brain is growing rapidly and it is easier for information to be absorbed; parts of the brain can nearly double in a year. During this stage, children need vital nutrients and personal interaction for their brain to grow properly. Children's brains will expand and become more developed in these early years. Therefore, a child with autism or any other special need, needs early intervention more than any other child.

I often think back to Andrew and when he was going through his regression stage around the age of  20 months to 26 months. I recall conversations with a few people and we were often worried that Andrew's severity would be just as bad as Trenton's.  However, Andrew started to blossom as soon as he started therapy. His brain really responded to the early intervention.  Trenton's brain had a harder time adjusting to the therapy. However, he has made great strides in his therapy. It is just different than Andrew's.

My point of this post is.....our brains do so much shaping in our early years.  The longer a child goes without interventions to help them, the harder it is to change the behavior.  If a child is severe, it is going to be extremely hard to change any behavior past the early intervention time but it can happen with hard work.
The earlier the diagnosis, the better. I believe in this so much. I have witnessed it with my own two eyes with my own boys.

I have more to post on this but it'll come later....I am one tired Mommy!

Monday, April 25, 2016

Autism Awareness Game

Over the weekend, we had our third annual autism awareness baseball game in my hometown of Flora, Illinois. I am so proud of my brother, the head coach, who started this three years ago. The boys threw out an honorary ball before the game started.
Trenton was unable to stay for the game. We lasted for the pre-game festivities and that is it. I barely got him to last for that. Until he improves in some areas, I am not sure we will even try it next year with him. He just can't handle situations like that.
Andrew, however, had a great time and enjoyed himself.

Trenton did hand the ball to the baseball player when it was his turn to throw the ball.

Loved seeing the boys in their autism shirts for the day.


 Andrew got his picture with the team. Trenton did not....we were walking to the van at this point.



Saturday, April 23, 2016

News Story

Two Brothers One Journey News story.

http://wthitv.com/2016/04/22/april-marks-autism-awareness-month-one-wabash-valley-mother-shares-her-journey-of-raising-two-autistic-children/


Luau Party


We keep busy throughout the whole year trying to participate in autism events. This weekend just so happens to be a busy one.
One thing we did on Friday was attend a Luau Party!!
As always, we never know how long Trenton will last even when it is in a familiar environment. Yesterday, Trenton lasted 45 minutes in a familiar environment and that was good for us!!
Andrew was disappointed to leave but that is the way it goes







Thursday, April 21, 2016

Hug & Words!

I have two amazing things I want to share on Trenton....

There is nothing sweeter in life than receiving something spontaneously from Trenton. It is few and far between when Trenton gives out anything spontaneously. However, when he does it, it melts my heart. It doesn't have to be to me....it just melts my heart when he does it to anyone.
When I picked Trenton up from Harsha Cognitive Center on Tuesday, I told Trenton to tell his lead coach, Annie bye. I always end our day with making him tell her and the other coaches bye.
Well, Trenton said bye and lend in and hugged her!!! It was so sweet!!! SO SWEET!!




I posted this on my FB page last night.
I love that because it is so true!!!!

For instance, one week ago Trenton was looking for one of his peekaboo animals. He was walking around the house making his upset noises while grabbing my hand and saying, "peekaboo."
I always talk to Trenton as if he can talk back to me. I said, "Where did you put it Trenton?"
Trenton starts making his noises and in the middle of his noises I hear, "I put it over here."
I stopped dead in my tracks and looked at him while he turned around and got his peekaboo animal from the couch. I am probably the only one that would have picked up on the sentence that he said because it didn't come out very plain, but he said it! I guarantee he talks to all of us all the time. Sadly, his brain wiring doesn't allow it to come out.


Trenton James- Keep up the hard work Bubba!! I know your words are going to come out more and more all the time through your hard work!!

Wednesday, April 20, 2016

Andrew's Verbal Obsessions

A week or two ago I did a post about the boys obsessions or in other words, what they perseverate on. I failed to mention one way that Andrew displays his obsessions and that is through verbal communication.   Andrew is very verbal and has no filter. He says everything that is on his mind.  This has really been extremely bad the past few months since the divorce. Andrew is very confused by the whole situation and he lets everyone that he comes in contact know. Some days and weeks are much worse than others. I am receiving some help in this area on how to help Andrew with this issue.  I have narrowed it down to what brings about the worse days and weeks.

It is so heartbreaking to listen to him and what he says. Nonetheless, I can't even begin to imagine having something rule your life to where the thoughts interfere with absolutely everything.

It isn't just one topic or one situation that Andrew gets fixated on. He is fixated on more than one thing. For example, if Andrew is really into a certain toy or a certain game, that is also the center of his conversations to people.

All in all, a lot of Andrew's autism is explained through his verbal speech. His obsessions, what he perseverates on, his anxiety, his social anxiety, etc....I learn so much for Andrew daily. He has many mountains to climb due to his autism and he has his Mommy helping him everyday:)

Monday, April 18, 2016

Picture

I have received some great feedback from my pictures over the weekend. All I can say is , Thank you for all the nice comments. I received an email from a follower of my blog. I have never met this lady before but she is a big supporter of ours. One of the first things she said in her email was that a person could never tell from a picture of what the boys and I go through daily. She is so right! A picture is worth a thousand words and yet, it can hide so much at the same time.
For instance, this picture....
is amazing!!! I will not get Trenton to pose like this again for a very long time. I will treasure and cherish this picture always. However, this picture can fool many people. I'm sure pictures like this play a huge role in how people judge children with autism.  For example, if you could see their wheelchair on their brain, society would look at my boys with a softer heart.....I have no doubt!

Don't they both look so normal????? You could never tell from this picture that Trenton has MAJOR sensory problems and that he smears his poop. You can't tell that he spends a lot of his time battling meltdowns and tantrums due to not being able to communicate. You can't tell from this picture that Andrew has major anxiety and social problems. For instance, less than 24 hours after taking this picture Andrew freaked out because a child his age appeared at my mom's house and he didn't know him....therefore Andrew went into social anxiety meltdown and freaked out wanting the child his age to leave. Andrew started crying for me, biting his nails, and insisting that the child leave immediately. I saw his anxiety rise well above then norm in a matter of seconds.
This picture also doesn't tell the verbal obsessions that Andrew fights daily.....this picture doesn't show the rigidness in routine and the effect of the boys when their routine, schedule, and life gets turned upside down.
I could go on and on but you get my point.
So, yes I treasure each and every moment of "normalcy" when I can get it and when I get a picture like this, I treasure it like no other.  I see beyond the picture....I see the battles when I get an amazing picture like this...I see the joy that these two boys have brought to my life. I see so much!
Thank you for everything that you do daily boys. Mommy loves you so much!!!

A few more good pictures from the weekend!

 Trenton was really enjoying the sensory input from the movement of the 4-wheeler! Look at his smile! He was even smiles when I stopped for a picture:)

Sunday, April 17, 2016

Fishing & Gardening

I have a fisherman on my hands:)
Andrew has wanted to go fishing lately. He finally got the chance to go fishing this weekend. He had an outing with Pops and he loved it! It was the highlight of his day. I didn't know how long he would last fishing but he did really well. Sadly, he didn't catch a fish but we are hoping for one next time.






Andrew was also very intrigued by gardening. He wanted to help Pops and he did a great job planting sweet corn.






This is the best picture of the boys that I have ever taken!! Trenton actually posed for the picture and did amazing!!!!




Friday, April 15, 2016

Poop Smearing

Trenton develops new battles daily. A common battle of individuals on the severe end of the spectrum is playing in their feces. It has been 3 weeks now that Trenton has developed this behavior. Almost daily, he drops his pants when he starts to go and just starts playing in his poop and smearing it everywhere. Of course, I stop the behavior when I see it. However, I am not going to lie, I haven't been right by his side the second his starts to go. I'm starting to get lots of experience in cleaning up poop!!
I've heard horror stories from fellow parents of waking up in the middle of the night to their child smearing their feces all over their bedroom walls, etc.
I know....it is gross. It is hard to understand..... but if you are an autism parent that has this battle, you understand! It is just part of the disability....

Peekaboo Animals

The other morning Trenton sat all of his peekaboo animals on the couch. This made him so happy!! I just loved seeing his smile and happy noises while he clapped at his peekaboo animals:)

Wednesday, April 13, 2016

Conrad

I spent some time on Tuesday observing and watching Trenton at Harsha. I LOVE when I get to see him in action. LOVE IT! I only got tears in my eyes once....that is good for me:)
The tears come for various reasons when I am watching him. They are happy tears and sad tears. While I watch him work at therapy it is so obvious how his disability has stole so many things from him. It is heartbreaking.  Yet, I am so proud of him. He works as hard as he can. It is just a bittersweet time.
The highlight of my time there was getting to hear him say his last name!!!!!! His coach asked him, "What is your name?" Trenton said, "Conrad"
I about lost it!! It was the most amazing moment I have witnessed in awhile.


Here are a few pictures of the T-man in action at Harsha Cognitive Center.



Tuesday, April 12, 2016

Trenton & Spot

I am so grateful for the way I was raised. Every child is not fortunate enough to have such loving, Christian parents. My parents were a great example to me and my brothers and it has most definitely had an impact on my life.
The example we set for our children start the day they are born.As parents we have a duty to perform. A great passage can be found in Proverbs 22:6 which says, Train up a child in the way they should go, and when he is old he will not depart from it.

As parents we have a duty to make sure our children know God and his teachings. Some children may not depart from their parents due to their disability. However, if a child is able to depart as he/she gets older, if they are raised up knowing what to do, he/she will know the Lord and follow his example. Some turn away from the Lord as they get older. However, parents are called to perform a duty when they have children.

I pray with my boys daily. I make sure I tell them that they can talk to God any time of the day, anywhere they are. Yesterday morning when Andrew was praying, he prayed for God to help Trenton and Spot to talk. My heart melted!!!!!! Andrew pays attention to absolutely everything!!! What was even sweeter was that he prayed for Spot. If you haven't seen the movie, The Good Dinosaur, then you are wondering who in the world is Spot. Spot is a character in the movie and he is unable to talk......just like Trenton.

Monday, April 11, 2016

Eating Issues and Sensory Processing Disorder with Autism


Children with autism spectrum disorder (ASD) may have restrictive and ritualistic behaviors that affect their eating habits. Some of them limit what they eat, in some instances so severely that it results in nutritional deficiencies that lead to weight loss, malnutrition and inadequate growth. Reasons for eating problems may range from a need for food to look a certain way, to avoid certain textures of foods. For example, some children with autism have severe oral sensitivity and may not like the texture or consistency of certain foods.

Many children's eating problems are due to their sensory processing problems that accompany their autism. Trenton has modulation sensory problems so EVERYTHING comes and goes with him. I have noticed that when his sense of smell is very hyper, he gags at others people food. He has gagged at Andrew and I's food several times.

For the past 2 months he has ate pizza around the clock......before that it was salad....before that it was chicken nuggets for like 4 months and they had to be fresh from McDonalds....before that it was spaghetti.....before that it was pork roast.
Whatever his body allowed him to eat he ate it for breakfast, lunch, and supper. I had to make sure that I had his food available at all times or he refused to eat......yes I said that... HE WILL NOT EAT and NO HE WON'T GET SO HUNGRY THAT HE WILL GIVE IN AND EAT.

Sadly enough I have been told before to give Trenton food and he will eat it.....he won't starve they said. Yes in fact he will starve. Children with autism everyday end up in the hospital on feeding tubes because of their refusal to eat due to their disability. It is a very serious part of autism. In fact, when autism was first  an official diagnosis, eating problems was part of the definition.


Below is an article from iancommunity.org on the seriousness of autism and eating problems.

Picky eating or feeding disorder?


Peter Girolami, Ph.D., clinical director of Pediatric Feeding Disorders at Kennedy Krieger, said that typically-developing children may also have preferences, refuse some foods now and then, and throw an occasional tantrum, but in other instances, they try different foods. "Children with autism, however, take selective eating to another level," he said. "For example, a child may want this particular brand of French fry. If the parents don't give that to him, he may respond with a burst of tantrums."

Children with autism who have feeding problems fear new foods.  "We often see that they develop inappropriate behaviors to avoid them—for example, they don't want to use a certain utensil or sit at the table. And the parents naturally let the kids have their way because they just want to get them to eat," she said.
Isaiah Stevens, a non-verbal child with autism, struggled with a severely restrictive diet until he was five. His mother, Audrey Stevens, said he preferred crunchy, yellow foods like goldfish crackers, waffles and toast. However, Isaiah was allergic to gluten (a protein found in wheat) and casein (a milk protein). Since the foods he preferred contained these allergens, Isaiah often had wheezing, asthma and constipation when he ate them.
"I eventually found an organic waffle recipe that was basically rice flour, honey and almond oil. I would make 30 of these a day and Isaiah would eat this throughout the day," Audrey Stevens explained. "He would also eat crunchy, salty bacon and drink almond milk, but nothing else besides these foods."
Children with autism who are picky eaters limit themselves to five foods or fewer in some extreme cases. "Typical children get fussy but they never restrict themselves to so few foods," she explained.
Like Isaiah, some children with autism may be selective with the color of the food, eating only yellow or white foods such as rice, potatoes and pasta. Others may prefer a particular texture—some may like smooth foods while others may eat only crunchy foods3.
"A lot of children with autism tend to prefer foods that are high in carbs, high in calories and low in fiber. This interferes with their gut function and leads to constipation," Dr. Levey said.
Dr. Girolami and Dr. Olive said that children with autism tend to go days without eating when they do not get the foods that they want.
Audrey Stevens said several health care professionals initially suggested not feeding Isaiah the foods he ate, and change his diet to include whole foods, with different drinks like coconut water or rice milk, for three days.
"They told me, 'He will starve, but after three days, he'll have no choice but to eat,'" she said. "Well, that just landed him in the ER [Emergency Room] dehydrated and so pale. His mouth was sticky. Even then, when I offered him some coconut milk in the hospital, he would move his head and have a meltdown." Audrey Stevens said after that plan to improve Isaiah's feeding habits failed, she and Isaiah's medical team felt that there was no other option but to put him in an intensive feeding clinic.


Below is a great article about the issue of food with kids on the spectrum.



As of right now, I am celebrating in this house! Trenton is eating a combination of chicken nuggets, salad, spaghetti, and crackers!!!!!!!!!!!!!!!!! WHOOOHOOOO. I feel like I have won the lottery:)

Saturday, April 9, 2016

The First Four Years of Therapy

Time goes by so fast, doesn't it?!?!?  I often think back to all the sleepless nights I have endured since Trenton was born. Those nights seemed so long. I never thought they would end...I never thought he would close his eyes and go to sleep. Yet, as a whole, life is just flying by and going fast.
After Trenton was diagnosed I remember thinking that he is only 2 and I was  holding on to hope as to the kind of progress that we would be making before he would be Kindergarten age.
He has made amazing progress in 4 years of therapy. April marks exactly 4 years of therapy for Trenton.  4 years! It seems just like yesterday but at the same time it seems like a life time ago.

I am overjoyed at his progress for a child with severe autism. Yet, our milestones are so much smaller than a typical child's. One of the first questions that I asked almost every parent who has a child with autism was....what age was he potty trained and when he did he start talking and communicating. The magic number that I heard most of the time was 6. Trenton will be 6 this summer...we are no where close to being potty trained and no where close to speaking/communicating  other than saying juice and my name.

He has made huge strides the past 4 years. Yet at the same time, we are so far away from the most simplest things in life.

I am not a sugar coater. I know in another 6 years things will probably be about like what they are now. Trenton's autism is very severe and I know that and I have accepted that. Trenton will keep on getting bigger physically in his body but he will not be developing mentally. He will be aging but once again not growing in the simplest, easiest of life skills. I hear often from others that it will get better when he gets older. But the truth is, it really won't. Hopefully, he will be potty trained in another 6 years so hopefully that will be easier but once again, Trenton won't be growing in other areas.  The likelihood is very slim and that is given from his history of the past 4 years and how he has progressed.

Puberty brings huge issues for kids on the spectrum. Many issues and seizures is one of them. As Trenton grows up and as Andrew grows up my prayers change for them as we are getting closer and closer to the age levels that bring on many other difficulties with their disabilities.

Whatever lies ahead of us, I know I will be just fine. I keep my faith and only grow stronger in that daily.
Deuteronomy 6:5 tells us to love the Lord our God with all of our heart and all of our soul and with all of our strength. As I have said before, it is amazing how God loves us back and how he provides for us when we are his children.  I don't for one minute blame God for the life given to me and my boys. It was given to us for a reason....for many reasons....I am pretty sure i know some of the reasons already. God sure does know exactly what people need. He sure does know how to "test" people to find his true children.

As the boys and I continue on our journey in this life, we will still continue to worry and fight the battles. Our battles will be getting worse and changing as they get older. However, we are a family of three that loves the Lord with all of our heart and all of our soul and with all of our strength so I know he will make sure that we are okay:)


I tell the boys all the time that God knew what he was doing when he put us together! Love them so much....just look how cute they are:)




Thursday, April 7, 2016

Obsessions

I want to elaborate a little more on my post from a few nights ago about "obsessions" when it comes to the boys. One of Trenton's obsessions right now is his black bag.

Andrew most definitely has many obsessions as well. Andrew can get fixated on something really quick and it is a huge obsession with him. Whatever the obsession is he goes to bed with it on his mind and it is the first thing he wants in the morning when he wakes up. Most of the time, it will be the first thing out of his mouth when greeting someone.  Most neurotypical people greet a person by saying something along the lines as, "Hi. How are you?" Instead of that, Andrew immediately starts talking about his obsession. He continues to talk about his obsession 24/7 and his whole day revolves around it. Simply put, he can't get it out of his head.

It is the intensity and duration of a person's interest in a particular topic, object or collection that marks it out as an obsession. People will often learn a lot about a thing they are obsessed with, be intensely interested in it for a long time, and feel strongly about it. It becomes a huge problem with people on the autism spectrum when their obsessions take over their lives. Both of my boys have this problem really bad.

Have you ever heard a song that you really like and then you find yourself singing it non-stop. You may get aggravated because you can't get it out of your head. Well, for an individual on the spectrum that is exactly what it is but it is magnified greatly and last for many more days and months. If you are like me, I may have the song in my head for one day......not for months.


We all have hobbies and interests and – generally – a strong preference for routine. Here are five questions that can help us distinguish between hobbies and interests, and obsessive behavior.
  • Does the person appear distressed when engaging in the behavior or does the person give signs that they are trying to resist the behavior?
  • Can the person stop the behavior independently?
  • Is the behavior impacting on the person's learning?
  • Is the behavior limiting the person's social opportunities?
  • Is the behavior causing significant disruption to other people?
Currently, Andrew is obsessed around a certain iPad game.  At other times he has been obsessed with certain TV shows or movies and certain toys.
Trenton's obsession continues to be the black bag;)


Tuesday, April 5, 2016

The Black Bag

This is the big, black bag that goes every where with us. Trenton will not leave the house without it. In fact, it goes every where in our house with him too. When he is in the kitchen, the bag is in the kitchen. When he is in bathroom, the bag is in the bathroom. If he is outside jumping in the trampoline, the bag is with him in the trampoline.
 It used to contain about 15 dvds and all of his peekaboo animals. However, he has down sized to just his peekaboo animals the past few weeks.



Many people with autism become attached to certain items.

People with autism may develop obsessions for several reasons, including:
  • obsessions may provide structure, order and predictability, and help people cope with the uncertainties of daily life
  • people who find social interaction difficult might use their special interests as a way to start conversations and feel more self-assured in social situations
  • obsessions may help people to relax and feel happy
  • people can get a lot of enjoyment from learning about a particular subject or gathering together items of interest.



Communication

One of the big parts of autism is a deficit in communication. Communication is both verbal and non-verbal. A child can communicate and be on the autism spectrum.
Trenton is my 5 1/2 year old non-verbal child. Trenton has the ability to say a few words. For example, I never thought a year ago that he would be saying my name daily but he does! I hear it numerous times a day and I can't tell you how amazing it is to hear daily. He almost says it non-stop!  While in his ABA setting he will use a few words. If he wants juice he will tell me, "juice". If he wants pizza, he will say, "pizza". If he is watching a video and wants to watch Elmo, he will say, "elmo." However, as far as being able to communicate anything else to me, it is very slim. If he is hurting or doesn't feel good, he can't express anything. If he wants to go somewhere, he can't tell me. He can't tell me anything past what he wants to drink or eat.

Many individuals on the spectrum are able to use a communication device. As of right now, this is very limited for Trenton. He is unable to use it. On random days, he has been able to communicate and press a button on it. However, over all, his communication on a device is extremely limited as well.

I will never give up hope that he will be able to communicate one day. I don't focus and pray for speech, but I pray for communication. I hope and pray that his life can be eased a little with the ability of communicating on a device one day.  If he is able to speak and use words verbally than of course I will be overjoyed and happy. However, I just want him to communicate. I don't care how, I just want him to communicate.

I believe a lot of the reason why he can't communicate on a device just yet is partly because of his sensory processing disorder. It is just simply too much to look at a screen and see options. His brain does not take in the information like a neurotypical person's brain does. We can look at a communication device and see each button. Trenton looks at it and sees a bowl of vegetable soup where everything is all jumbled up together and his brain is unable to let him focus on the device.  It takes something very small to get Trenton's brain over stimulated and then he can't focus at all nor can he filter out anything which just leads to more communication breakdowns.

Nonetheless, I will always devote every ounce of sweat I have to help him in life and this is one area where he focus a lot on.

Andrew, on the other hand, can communicate.  He had echolalia really bad when he was 2 and 3 years old. However, through his hard work in therapies he has overcame that. Andrew still has many breakdowns in communication.

Andrew can get over stimulated and he is unable to express himself during these times. He will tell me that he is unable to use his words or that his mouth can't talk. When he says something like that, I make sure he is in a quiet environment, such as his bedroom, and I let him calm down from his over-stimulated state.

Andrew's communication has a breakdown at times when he is in a bigger crowd or unfamiliar place. During these times, he will regress to just repeating or using some echolalia.  I know during these times that his brain isn't clear and often referred to as a "foggy" state.

If Andrew is overloaded with a lot of verbal information , he can't process it all. He will stay focused on the first thing that he heard and miss everything else. This can often be recognized because he is repeating the first or the last part that he processed.

Andrew takes in information much better if it is broken down into small increments for him.

Andrew takes language very literal. If someone uses language and Andrew doesn't understand the meaning of it, he will focus or become obsessed with it and tune everything else out while he focuses on the "literal" language that took him for a loop. Sometimes the whole rest of his day is focused on what he heard earlier that he didn't understand. I have learned this the hard way a few times:)

As you can see both of my boys have autism, yet both are totally opposites in the area of communication and every other area of autism.
I am so proud of both of them and how hard they work every day. They are truly my heroes in this life. I am so blessed to be their Mom!!

Monday, April 4, 2016

Sleep

Research has identified that 90% of individuals on the autism spectrum have methylation impairments. The methylation cycle is the cycle in the body that governs development, regulation of brain chemicals like serotonin and dopamine, managing inflammation and removing environmental toxins.  Serotonin is a much needed neurotransmitter when it comes to sleep.

Children with ASD are more likely to have circadian rhythm (natural wake/sleep cycles) disturbances and may have abnormal melatonin regulation. Melatonin is a hormone that regulates the wake/sleep cycle. In addition, children with autism may be more anxious about the bedtime routine and may have difficulty with the social cues that signal bedtime. They are also more sensitive to sensory experiences such as light, touch or sound.

Many children with ASD have also reported being woke up in the night due to a noise. Unfortunately,  when individuals with ASD wake up in the night, they are unable to go back to sleep due to their brain chemicals.

A strict, normal routine helps with the methylation cycle. I follow the same routine 7 days a week and once the boys are asleep, I have no TV on.....nothing that will make a noise . Sleep is way too important and I truly believe this is helping Trenton with his sleep problems. 

Trenton has had extreme sleep problems since he was born. Trenton and I have functioned on less sleep than I ever thought was possible. Trenton's sleep is still bad and I fear that it will always be a huge issue with him. However, even though it is still bad, he has been in the best period of sleep that he has ever been in. I still can not count on him sleeping through the night but he is doing great  since December. Like I mentioned earlier, I believe the same, strict routine and quiet house once he is asleep is helping his sleep.

For years I was used to 2 hours of sleep in a 24 hour period. I was used to trying to calm Trenton's meltdowns in the middle of the night. I saw things and witnessed things that only another autism parent, who had a child like Trenton, would believe. I have drove the roads for countless hours in the night trying to put Trenton to sleep. I have been so sleep deprived that I have literally laid down in vomit and feces and slept because Trenton just closed his eyes and the cleaning of the huge mess from his GI issues could wait till he opened his eyes because I needed my sleep. I have drove to and from therapy on 2 hours of sleep daily. I know what sleep deprivation feels like. I know what it is like to push yourself through pure exhaustion and sleep deprivation. So....even though his sleep isn't perfect and it could be better, I will gladly take what I have been getting since December!!!! GLADLY:)

Autism presents itself so differently in each and every child. Some children have no sleep issues and some have very severe sleep issues. I am not sure that we will ever understand every little piece of autism. I would love for the boys to be able to explain how they feel one day.



Sunday, April 3, 2016

Video


Click on the link to see an Autism Awareness video I made. The video consist of the beauty of autism.

http://www.photoshow.com/watch/aN4Ux8Zv

Saturday, April 2, 2016

Friday, April 1, 2016

Early Diagnosis is the Key!

We are officially in autism awareness month. However, we all know that I like to raise awareness every day. The importance of raising awareness is crucial for many reasons. One of the reasons why it is so important to raise awareness is for early diagnosis. Early diagnosis is CRUCIAL folks! I truly believe that it can make a huge impact on your child no matter where they fall on the spectrum.

No big smiles or other warm, joyful expressions by six months or thereafter
  • No back-and-forth sharing of sounds, smiles or other facial expressions by nine months
  • No babbling by 12 months
  • No back-and-forth gestures such as pointing, showing, reaching or waving by 12 months
  • No words by 16 months
  • No meaningful, two-word phrases (not including imitating or repeating) by 24 months
  • Any loss of speech, babbling or social skills at any age
  • Doesn’t make eye contact (e.g. look at you when being fed)
  • Doesn't smile when smiled at
  • Doesn't respond to his or her name, or to the sound of a familiar voice
  • Doesn’t follow objects visually
  • Doesn't point or wave goodbye, or use other gestures to communicate
  • Doesn’t follow the gesture when you point things out
  • Doesn’t make noises to get your attention
  • Doesn’t initiate or respond to cuddling
  • Doesn’t imitate your movements and facial expressions
  • Doesn’t reach out to be picked up
  • Doesn’t play with other people or share interest and enjoyment
  • Doesn’t ask for help or make other basic requests
  • Appears disinterested or unaware of other people or what’s going on around them
  • Doesn’t know how to connect with others, play, or make friends
  • Prefers not to be touched, held, or cuddled
  • Doesn’t play "pretend" games, engage in group games, imitate others, or use toys in creative ways
  • Has trouble understanding or talking about feelings
  • Doesn’t seem to hear when others talk to him or her
  • Doesn't share interests or achievements with others (drawings, toys)
  • Follows a rigid routine (e.g. insists on taking a specific route to school)
  • Has difficulty adapting to any changes in schedule or environment (e.g. throws a tantrum if the furniture is rearranged or bedtime is at a different time than usual)
  • Unusual attachments to toys or strange objects
  • Obsessively lines things up or arranges them in a certain order
  • Preoccupation with a narrow topic of interest, often involving numbers or symbols (e.g. memorizing and reciting facts about maps, train schedules, or sports statistics)
  • Spends long periods of time arranging toys in specific ways, watching moving objects such as a ceiling fan, or focusing on one specific part of an object such as the wheels of a toy car
  • Repeats the same actions or movements over and over again, such as flapping hands, rocking, or twirling (known as self-stimulatory behavior, or “stimming”). Some researchers and clinicians believe that these behaviors may soothe children with autism more than stimulate them.


  • There are other signs, these are not the only signs. Other areas go into autism too such as sleep problems, sensory problems, etc. However, what I would love people to understand is that a child does not have to have every single one of these symptoms to have autism.  For example, Andrew has many or had many of these symptoms such as
    • Has trouble understanding or talking about feelings
    • Doesn’t know how to connect with others, play, or make friends
    • Preoccupation with a narrow topic of interest
    • Lines things up and arranges in certain order
    • follow rigid routine
    However, Andrew is great on eye contact, smiling, enjoys being touched and held. There are many symptoms that Andrew is great in and many that he is not. Not every child has to display every symptom like Trenton.
    Thankfully both boys were diagnosed early.  Andrew has shown incredible improvements the last two years since he has been in therapy. For instance, he doesn't line items up anymore. Instead he actually plays with toys appropriately almost every day!!

    So, yes awareness needs to be spread daily. I have had several people thank me for helping them get their loved one diagnosed just because of my blog.  There is a lot that defines autism. Much, much more than just this one small little post. For example, a child can be like Andrew and be "too" social. Many people think that you have to be like Trenton and have no socialization skills in order to have autism.  Every symptoms can go either way...hypo or hyper. Trenton is hypo and Andrew is hyper.

    Please, don't miss the signs! If you are the littlest bit worried, talk to your doctor. The earliest your child or loved one can get help, the better. I feel very confident saying that if I would not have got Andrew diagnosed so early, I don't think he would be as mild as he is.