Monday, January 30, 2017

Introduction time!

I have so many new followers! Thank you so much! I like to introduce myself from time to time so all my new followers know exactly who I am. Tonight, I want to do that while I give you a little history on myself:)

I am a soon to be 36 year old autism mom to two amazing boys. I love to write about autism and to share my knowledge of IEPs and special education. I have my bachelors in special education. Very ironic! It has definitely helped me on my journey with the boys! I no longer teach. I am just a single momma who takes care of the boys and their therapies.  I published a book last year that you can find here....


 I grew up in Southern Illinois in a small town on a farm. I LOVED the small town life and farm. I loved my animals and everything about my life! I had amazing parents who raised me up knowing God and that has greatly impacted my life!
I was an athlete. I played three sports my whole life. I was on my way to furthering my basketball career after high school until my health had other plans. I faced some big health issues when I was 18 and never ended up playing college ball.

Life took me in all different directions. In my twenties I met the boys father and we got married.  In our short marriage we had a miscarriage and two boys who were diagnosed with autism. We moved from Illinois to Indiana in December of 2015 in order to get better help for the boys. Not even a full year later, my husband left and I was divorced a year ago.

I have had my trials in life
  • health issues in late teens
  • miscarriage
  • two boys with autism
  • divorce
  • health issues now in my 30s
Even though I have had my trials, I have been greatly blessed in life. My life didn't lead me to where I wanted to be. However, God knew better and had other plans. I face each day and get through each day through my strength that the good Lord provides. If it wasn't for my faith, I am not sure where I would be.

My oldest, Trenton, is 6 1/2 years old. He receives ABA full time and speech and occupational therapy. He has a lot of sensory problems. He has to be constantly moving and jumping.  He is mostly non-verbal but can say a few words when prompted a lot. We recently achieved potty training! YAY!!! He doesn't make eye contact. He does not do anything age appropriately and probably never will. His autism is severe. I could speak all day about his challenges. However, if you follow my blog, you will eventually learn.
He loves his stuffed animals and youtube videos!

Andrew is 5 years old and has a diagnosis of high functioning autism. As he gets older his autism becomes more evident. He is verbal and takes language very literal which causes issues. He has a lot of OCD problems as well as anxiety. One of his biggest challenges is how to socialize properly. His anxiety takes over in situations and he becomes very socially awkward.
He easily gets fixated on something and can't get it off his mind and won't move on. Again, I could speak a long time on his trials but you will learn as you follow our blog.

It is not easy watching your child live their one life with such trials and difficulties. It is hard to live a life with autism. The one disability that no one can really understand. The one disability that gets judged so often. Therefore, I decided I wanted to do as much advocating and educating that I can in order to help my boys!

Both boys have taught me so much about the important things in life. They have made me understand many things from the Bible much better.

I have my days where I get down and lonely just like you. It is very common among autism and special needs parents. It was difficult in the beginning of my autism journey to understand a lot of why questions. However, I have learned to look at the positive and try to find out what God is trying to tell me. I have learned to make the most of a difficult journey. I give all glory to God and will praise him always and forever!

Thank you so much for being a follower and a supporter! You help me just as much as I help you!!!







Sunday, January 29, 2017

Faith. Hope.Love

I Corinthians 13:13
And now these three remain: faith, hope and love. But the greatest of these is love

The boys and I have all three! We live on our faith...hold on to our hope each day....and have nothing but love for each other and others!

Hug

This is a picture of Andrew and I hugging. However, I live on nothing but HOPE and I can't wait for the day that I get a long, tight hug from Trenton!!!!!! I know it will happen one day! Gotta have that hope!



Thursday, January 26, 2017

2 AM

Trenton's new time to start our day is 2 AM. I really want our 4 AM back especially when Andrew doesn't go to bed until after ten thirty! This Momma is getting tired these days.
Here he is today taking a nap before therapy.

Tuesday, January 24, 2017

Focus On The Blessings In The Road Less Traveled




It’s 2:20 AM. I am woke up to Trenton’s noises.  The noises that I am accustom to hearing from Trenton. It’s the kind of noises that people make who are unable to talk.

“Oh, Trenton. Already?” I say half awake and half asleep. It is the middle of the night to most people but it’s the average time that we start our day.

“Juice.” He says. I know that I better get his juice for him as soon as I can before he gets to loud and wakes up Andrew.  For several years I managed two boys with autism up in the night. For months upon months I dealt with their cries, tantrums, meltdowns, and all the other challenges that autism brings in the middle of the night. I do whatever I can to make sure that when Trenton wakes up we do our best to not wake up Andrew.

I give him his juice and he drinks it all in a matter of seconds.

“More juice.” He says demanding. Again, I get him another sippy of juice.

It’s been about two minutes since he woke up and now he is off and running around the house and he doesn’t stop until we leave for therapy five hours after waking up.

He runs in circles, bounces on his trampoline, runs up and down the stairs, back on the trampoline, back to running laps around the living room, kitchen, and dining room, and the cycle continues for hours.

I have my first pot of coffee drank by 5 AM and I finally start feeling like I am ready for my day.

By 7:00 AM I wake up Andrew and my stress and issues are doubled now. Two boys, both with autism awake now. Both boys with different challenges and both need one on one help.

Andrew is verbal…very verbal to say the least. It helps but it brings about another set of challenges. He talks about everything. He has to know every detail of what he wants to know about and he doesn’t drop the subject. I get asked about the same questions over and over and I have to repeat exactly what he wants to hear, exactly the way he wants to hear it. If I don’t, he won’t move to what I need him to do such as getting ready so we can leave for therapy and school. He questions everything.

Andrew has to have a certain amount of time in the morning to spend with his fixated objects and right now it is Angry Birds. He has to have time with his Angry Bird toys before we leave. If not, he isn’t leaving and/or it dictates his mood for the rest of the day.

Andrew takes a long time to do the smallest command. It takes awhile for it to process what I just asked him. He then questions it over and over. He goes into great detail of why he is questioning what I asked him to do. If he doesn’t like what I asked, he will argue or get very defiant.

While I spend a complete hour trying to get Andrew to transition to getting dressed, brushing teeth, and whatever else we need to do to get ready while battling his OCD issues, Trenton continues to do his obstacle course through the house.



I can go in more detail of our days and routine but does it matter? It doesn't compare to doing it and living it every single minute of your day
Everything in our life takes strategic planning! I have to be prepared for everything that comes our way and it is mentally exhausting.

Each and every single day is a battle of many challenges against autism. Nothing comes easy. It is all hard work. We don’t know what “down” time is nor will we ever know what it is.

Behind all the hard work, we still have time to laugh and smile. However, behind those laughs and smiles is sadness and heartache. The kind that NEVER goes away. It is the kind of sadness and heartache that no parent should ever have to go through.  It is the kind that sticks around until you take your last breath. I have learned how to deal with the sadness and heartache through my savior and Lord.

No one can understand the type of sadness and heartache that I am talking about. Not even the ones you feel the closest to.  Therefore, through the strength that I find through God, I carry about my day smiling behind the pain and loneliness that comes with being a single special needs parent.

I do my best to block out all the pitiful things that people whine about. It is obvious that some people don’t know true pain, heartache, or even real stress and worry for that matter. The judging, negative remarks about others are so displeasing.  If they only lived a day in my shoes, would they still be like that?

I know how easy it is to focus on what you don’t have in this world and especially what your children don’t have. It would be easier to not think about it if you were never around what you didn’t have. However, it is impossible to avoid what you don’t have in this world when it is all around you.

Nonetheless, I strive my best to be a woman and mother of grace and wisdom.  After I have my moments daily, and yes they happen daily, where I secretly cry and wish for things that I don’t have, I get back on track of being thankful for what I do have. I pray and put my faith in the Lord and he guides me daily. He guides me on this road less traveled. A road that is full of the most amazing things that the majority of people never get to experience. God’s plan wasn’t for us to have the typical American dream. Instead, his plan is much more amazing. It may be full of pain and heartache but it can be very amazing and beautiful....and focusing on the blessings is what we have to do!







Thursday, January 19, 2017

My Babies!

I pray for my babies daily...multiple times a day. Even though my prayers aren't answered like I would like, I know the good Lord knows best and I thank him for that. I don't know why He does things the way He does but we just have to accept it and thank God for being there for us through this hard life.
1 Thessalonians 5:17-18
 pray continually, give thanks in all circumstances; for this is God’s will for you in Christ Jesus.

Animals

Trenton loves all of his animals lately...stuffed and paper.
The other night some of his friends watched a video on the ipad with him:)
 Then he tucked them in bed with him!

He loves some of his paper animals that he came home from therapy with last week. He loves them so much he hangs them up all over the house. LOL! 



Sunday, January 15, 2017

Behavior on the spectrum-High Functioning

Parenting is a whole different ballgame when you are raising kids on the spectrum, mild to severe. The typical parenting "rules" don't exist in an autism house which his why autism parents are the most judged people.

For example, behavior problems is one of the areas of autism. Most often people think that a person/child with autism that is misbehaving is doing it just simply because they want to or cause they can get away with it. WRONG!

Maladaptive behavior or misbehavior is done in order to simply survive in our scary world. Our world for any person on the spectrum can be confusing and difficult. Things come at them differently. They hear things, see things much differently than we do. They don't interpret language like we do or it takes them much longer to process it.

High functioning kids often get overlooked which can lead to depression as they get older or other issues.  Life is hard for them so they react to it by misbehaving. It is hard for them to behave properly when all of a sudden their schedule has changed because they depend on the consistency in their schedule. They may display maladaptive behavior because they are stressed from school because they can't make friends.

Often these behaviors are displayed because they don't understand what is being asked from them because they depend a lot on being within inches from a person face in order to be able to understand what is being said to them. When they are sitting in a class the teacher can't always be right there to explain things much slower and much more precise than the other students require.

Kids on the spectrum interpret language different than typical people which plays a huge role in their behavior. Often times they are asked to do something but the person used the word "to" and in their mind they are thinking of the number 2 and they are stuck on trying to figure it out and they never get to what they were told to do because they can't get their mind off of the "to"....and it escalates from there because the person who asked them to do something is now getting mad and reprimanding the child with autism for not doing what they were told but in their mind they are still trying to understand what was being asked while using a word "to" "two".....does that make sense? That is just one scenario but I think you can get what I am trying to say.

Below are a few article to explain a little on high functioning autism.

https://www.med.or.jp/english/journal/pdf/2012_04/303_306.pdf


https://www.iidc.indiana.edu/pages/Tips-for-Teaching-High-Functioning-People-with-Autism

Andrew is changing all the time. On some days he can handle things a little better than other days. Maladaptive behaviors are coming out more and more all the time and I am confident that it is the stress of school. He tells me often that everyone his age has friends except him....and it breaks my heart to hear him say this. When Andrew is uncomfortable he closes the world around him down and he keeps to himself. He shuts everything else out which is why he will appear to be quieter around others and most of the time he won't talk much. He is simply trying to shut the world around him down. When he gets home in the environment that he is most loved in and is comfortable in, his body releases what he has been overstimulated from earlier. Again, this is VERY common among kids with autism.  We as typical people do this all the time. You may get home from work and release from your day by sitting on the couch and relaxing....or reading...or having a cup of coffee...smoke....whatever you do to release and feel better. Kids with autism do the exact same thing, it is just they do it in a much different way because of their behavior challenges.

  At home we are doing a sticker chart and it helps him to remember to make good choices. Constant praise is crucial for kids on the spectrum. They really do respond to good praises and it helps to prevent maladaptive behaviors! Andrew loves being praised and getting stickers for good choices:) Doing what you need to do to prevent the misbehavior is what we need to do. Once the maladaptive behavior happens, it can be difficult to get the good behavior back in the same day.


Friday, January 13, 2017

Pictures

Two of my favorite pictures this week.

Right after we took this picture, Andrew said, "Moochies you are so pretty in that orange shirt." Andrew is seriously the sweetest little boy I know. I don't tell him to do this stuff, he just does it. He has such a good heart. I love it!

What this picture doesn't show is the anxiety meltdown he had about 20 minutes after this picture. His white body was blanketed with red spots all over him. This picture also doesn't show the aggressive behavior that came out after he was overstimulated. I will discuss later in a post of some of these issues we are having lately.
 My new favorite picture of Trenton and I. This picture speaks volumes to me!

Article

An article of mine that was published on this website:)

https://autismawareness.com/the-day-my-child-accomplished-potty-training/

Tuesday, January 10, 2017

ABA & NET

There are a few different types of therapies and ways to help your child with autism. For my boys, Applied Behavior Therapy (ABA) has proven to be the best for them. I am a 100% believer in this type of therapy.

Behavior analysis focuses on the principles that explain how learning takes place. ABA is simply the application of behavioral principles, to everyday situations, that will, over time, increase or decrease targeted behaviors. ABA has been used to help individuals acquire many different skills, such as language skills, self-help skills, and play skills; in addition, these principles can help to decrease maladaptive behaviors such as aggression, self-stimulatory behaviors, and self-injury

When a behavior is followed by some sort of reward, the behavior is more likely to be repeated and this is called positive reinforcement. Through decades of research, the field of behavior analysis has developed many techniques for increasing useful behaviors and reducing those that may cause harm or interfere with learning.
ABA is the use of these techniques and principles to bring about meaningful and positive change in behavior. ABA is widely recognized as an effective therapy for individuals on the autism spectrum.

ABA uses Natural Environment teaching (NET) which is basically teaching the child and performing ABA in a natural setting. It is not sitting behind a school desk all day like typical children learning. Instead it is simply teaching the child during play. Natural environment teaching leads to an individual being able to learn skills in one environment and generalize them to other environments. It focuses on an individual’s specific needs and embeds them within the child's interests.

If I could give any bit of advice to new parents facing an autism diagnosis.....get your child in a good ABA program that utilizes NET as soon as you can if it is possible!!

Parents play a CRUCIAL role in their child's ABA program and how they respond. This is what one website said...

What is the role of the parent in an ABA program?

Parents are indispensable in the child’s program. They play a necessary and critical role.  Studies show that children whose parents are actively engaged in the process make measurable gains (4). First, no one knows the child better than the parent; the parent’s provide critical and insightful information that will help guide the ABA program. Second, parents are able to continue to prompt and reinforce the child through his and her various daily activities - an essential component to generalizing skills. Finally, parents are in a position to be able to record and track ABC data in the home and community setting. This information is vital in hypothesizing the function (the “why”) of specific behaviors as well as for determining what conditions encourage behaviors to occur.

Trenton goes to Harsha Autism Center and we just love our team there! Lately, Trenton has been going out in the community. He goes to certain stores and he even goes to a restaurant and works on his goals!!! I am so thrilled about this part of his training. I have worked so hard the past few years implementing this myself and now we are doing some training with this through Harsha Autism Center. I am one excited Mom!!



Sunday, January 8, 2017

Trenton's Play

A few pictures I wanted to share of how Trenton "plays".
Last week at speech, Trenton thought each of his books needed their own chair:)
 On Saturday, he played a lot with some of my canned goods. Then he placed one of his animals on each one. I guess his animals were hungry:)
This is the small things that make me smile:)
LOVE LOVE LOVE IT!!!

Our Answers

I am sure the majority of you have heard about the four people in the Chicago area that did what they did to the man with a disability. As a parent of two children with special needs, stories like these make my stomach turn. It hurts to hear what happened. It infuriates me to say the least. 

I know it made the special needs community upset as every story similar to that one does.

I am not sure why situations like this happen in the world. I simply don't know. But, it has happened from the beginning of time. I often hear people talk about how the world is getting worse and worse. Yes, it feels like it is. However, it has been like this since the beginning of time.

The first murder was Cain killing Able and that can be found in the very first book of the Bible!  Slavery happened in the beginning of the Bible. So many accounts are right there. The horrible stuff that is going on in our world has been going on since the beginning of time.

On the other side, bravery and courage has been happening since the beginning of time, too. There are numerous accounts of the horrible things in the Bible but there are also wonderful, amazing stories of courage, bravery, wisdom, and so forth.

It is all right there for us to read and to find the answers to our life. It is all right there as a guide for us. The Bible, the most amazing book that anyone can pick up and read.

So when you think you don't deserve what is going on in your life, just know that God never told anyone that they deserve the picture perfect life. God never said life was going to be easy. He clearly made his point  from the beginning that life was hard and had it's hard times.

It is so easy to say bad things about the people who do the cruel things in this world. But, what we are really suppose to be doing is praying for them. Those people need the prayers of this world.

Luke 6:27-31
But to you who are listening I say: Love your enemies, do good to those who hate you, 28 bless those who curse you, pray for those who mistreat you. 29 If someone slaps you on one cheek, turn to them the other also. If someone takes your coat, do not withhold your shirt from them. 30 Give to everyone who asks you, and if anyone takes what belongs to you, do not demand it back. 31 Do to others as you would have them do to you

I hope and pray that a situation like what that man went through never happens to either of my boys. It is one of my fears and always will be. As a parent we want to protect our children. We don't want them to suffer from the cruelty of the world. When you have a child/ren with special needs, it is a huge worry because they can't care for themselves and are going to be much more susceptible to bullying and hate crimes.

When I have my moments where I want to get so mad that stuff like this happens in the world, I remind myself how I need to be praying for the enemy. But, what I remind myself the most of is no matter how hard this world is to live in, we are not here forever. We are only here for a little while and we can get through the pain and the hurt of the world because our eternal life is what matters. The pain and hurt that I go through raising children with special needs, going through a divorce, health problems, and so forth...it simply doesn't compare to the pain and hurt that Christ went through on the cross in order for me to live. He could have saved himself but he didn't. That is all I need on some days to keep on going through this scary world.

Therefore, I will keep letting God lead me on my journey in life while reading His word and finding the answers to everything in life. It is all right there for us to read. All of our answers are right there! I'm not telling you they are the answers you want, but they are our answers.

Friday, January 6, 2017

Lil' A

Fun times with Lil' A! He just loves to be silly.....like his Momma!


 He finally smiled right!

Thursday, January 5, 2017

Visual Schedule

A visual schedule simply informs us of what is going to take place.Visual schedules often use images, symbols and photos to better communicate a task or activity   Most neurotypical people do not follow a visual schedule because we do not simply need to. We can adjust and manage our time without schedules. However, individuals with autism have greater difficulties coping with unstructured time than neurotypical people and benefit from increased structure in their lives. 

There has been a lot of research on autism in the past years. Children and adults with autism have a great need for structure and safety. Sudden changes can seem threatening and cause stress and behavioral problems.

The advantages to using a visual schedule with individuals with ASD include (Mesibov et al., 2005):
  • It utilizes the individual’s visual strengths and therefore provides a receptive communication system to increase understanding;
  • It helps the individual to learn new things and broaden their interests;
  • It provides tools that allow the individual to use skills in a variety of settings;
  • It can increase the individual’s flexibility;
  • It helps the individual remain calm and reduces inappropriate behaviors; and
  • It helps the individual to develop independence and resulting self-esteem.
Making visual schedules is very time consuming! VERY! However, it can really help children on the spectrum. I saw it personally when I worked as a special education teacher and I see it with both my boys. Andrew uses one at home. I used to use one with Trenton but he refused to use it and only tore it up repeatedly at home. However, he is at a different stage in his life right now so we are back to using a schedule. Tonight was the first night that we used it and he loved it! Let's keep out fingers crossed that it continues:)
His schedule is on his door to his room. I also have a First/Then chart right below it in case we need it!
      

Tuesday, January 3, 2017

If I Could



If I could only go back and have one more holiday season where I went to a family gathering and actually ate a full plate of food while sitting and enjoying a conversation with others.

If I could only go back and have one more holiday season where I enjoyed watching loved ones open presents.

If I could only go back and enjoy the family gatherings where we would sit and play cards all afternoon and listen to nothing but laughter from loved ones.

If I could only have one more night where I could lay my head down on my pillow without any worry of how much sleep my child will let me get that night.

If I could have one more day where I didn't feel isolated from the world that I once knew.

If I could just have one day without the loneliness feeling that autism has brought to my family.

If I could have just one more day without the dreaded thought of "what if something happens to me."

If I could have just one more day without the constant stress from raising a child with autism.

If I could have just one more day where routine and schedule didn't matter.

If I could have one more day of walking into a restaurant or store without the stress that we have now.

If I could have one more day without the worry of when the meltdown will hit or when the sensory overload will hit.

If I could have one more day where I was never judged for my actions.

If I could have one more day where I was able to sit on the couch and actually watch TV or my favorite sports team play.

If I could have one more time where I was able to attend a public outing without the worries that I have now.

If I could have one more day where I could step outside of my house and enjoy the neighborhood that I live in and mingle with my neighbors.

If I could have one more day to walk around my house without being locked in it like a prisoner.

If I could have one more day where I didn't know the trials of autism.

If I could have one more day of the carefree life that I once had.

If I could....I would never take for granted what I did in my life before autism. I can think of many "If I could" moments in my life. However, the life I have now is better....much more stressful but much more meaningful than it was before.



Monday, January 2, 2017

Tomorrow

Tomorrow, January 3rd, is the day I have been looking forward to since Christmas! We are finally back to normal and got our normal routine and schedule back! Thank goodness!
The rigidness of routine, schedule, and consistency are very crucial to almost every aspect for Trenton.

For a child with autism, the world can feel like an unpredictable place – and since children with autism tend to be anxious, unpredictable equals frightening. In our life, the unpredictable is not following routine and schedule. How can we help this? To try to make things as predictable as possible. I need to try to control the environment to make sure that no new situations come along that make everything frightening again which means our routine and sameness is very important.

Since it has been different the last two weeks, maladaptive behaviors and hyperactivity have been on the rise with both boys but more so with Trenton. Trenton has been over stimulated and the older he gets the longer it takes for him to "come down" from over stimulation. The sad thing is that we really didn't do much this year. We were in Flora and around my family for one night and that is normal for the boys. They have been there since the day they were born. The boys were with their dad and some of their family one day. However, both days involved presents and people talking, etc and that is where the over stimulation occurs in Trenton. We never do extended family and probably never will.

We have to have a nice, quiet house at all times every single day. Yes, I hate it but its what I have to do for him. It's almost two weeks with a different schedule.
All in all, I am just thankful to get back to normal. I wonder how long it will take me to get the routine back?!?!? UGH...............

One good thing did happen over break and that was that I got to spend some time with two of my best friends. These girls and I have been friends for years! They have been great supporters of mine. We live in all opposite directions and I can't remember the last time the three of us were together.
Below is one of our first selfies that the three of us took approximately 18 years ago. (We are in different spots. Can you figure out which one I am?) Sometimes I look back on old pictures and the carefree person that I was and I am just in awe. I had no idea back then what my life had in store for me. NO IDEA!