Thursday, June 23, 2016

Loving the Improvements & Praying They Stay

I have said numerous times on here how autism is a rollercoaster ride. It is a constant up and down battle. Some days and some weeks are smooth and then the next few weeks could be a disaster. When one area seems to be in a "good" phase, sometimes it brings out the worst in other areas. It is part of the splintering affect with autism.

However, right now we are doing the best that we can.  I have had a really hard time with Trenton's hyperactivity and impulsive behavior a few months ago. It was so bad that it was dangerous. Trenton's psychiatrist saw him a few weeks ago and like always, Trenton destroyed her office within one minute of being in there. She said, "Is he still like this all the time even with the medicine I put him on?"
I said, "Oh this is good. He is good right now."
She said, "You have no idea what good really is. He is a severe kiddo that has so much going through his body that he can't even calm down for one minute."
I said, "Oh I know. Trust me. But he is in a good phase for us."
She just couldn't believe it. But, we have been through so much that what is good for us is normally "not-good" to others. It just depends on your story.....

Anyway, all in all, we are at a fantastic place right now and have been for a few months. Overall, Trenton has slept the best he has ever slept since December. Sure he still has his nights where he gets up at 2 AM for the day. His average wake up time in the morning is 4 AM but it is wonderful for us! WONDERFUL!  I will take a 2 or 4 AM start to our day over the H-E-L-L that I went through his first 5 years of his life.  ( Every night he would go sleep on average around 10 and be up at midnight and go back to sleep around 5 AM) Wow...I have no idea looking back how I did it....I literally went on 1-2 hours of sleep every single night and drove to Olney and Effingham daily for therapy. But, I didn't give myself a choice...I pushed through it for the boys. So, let's pray that the decent, best ever sleep that Trenton has done in his life still sticks around!! Seriously, I love my 4-5 hours that I am getting!! Now that I just said that, we will have a really bad night. LOL!

Another, area that has greatly improved is potty training. Potty training was going great around November last year. It started to take a nose dive in the wrong direction in December. It was TERRIBLE come January of this year.  Remind you, I have been potty training Trenton for 14 months now. I have my theories of what went wrong last December/January. Another role in his potty training that helped make it go wrong was the changes that happened in our house.

A neurotypical child who is potty training will regress during big changes in their life from what I have been told. This all happened around the time my ex-husband left. Even though I have always been the primary care taker of the boys, I believe this had a negative impact on Trenton and his potty training. Trenton's anxiety became at a new high during this time. Trenton would not let me out of his sight for the months to follow. He wanted me right by him all the time. He would cry if I just walked out of the room. Trenton would tell me to, "stay" while holding my hand. I seeked help to try to figure out the situation and the therapist agreed with my therapy that Trenton was having anxiety issues and afraid that I was leaving next. I am "his person". I am the one that he leans on and I know exactly what he wants by the slightest sound that he makes.  Much more on this but I won't discuss...long story short....I have literally sweat with actual sweat running down my body from January to April trying to potty train Trenton. I have cried from January to April with Trenton during his potty training problems and anxiety problems. It has been extremely hard. Words can't express how hard it has been while taking care of another child and their challenges.  But, I didn't give up. I kept researching, talking to his team at Harsha Cognitive Center, and we came up with a new idea with his potty training. It was pretty much the last resort.  I spent lots of money to make it happen and it worked!!!!!!!! So far anyway!!  I implemented it all in April...I believe I did a post back in April on this...and we are doing great at this point:)

Trenton is doing the best he has ever done with potty training for me at home consistently!!! Lets hope and pray that it continues. Potty training has been one of the hardest things for me to accomplish with Trenton and we are still  not close to accomplishing it. (Much more different steps to follow with a child with autism) However, we are making progress and I am beyond elated!!!

All in all, between sleep and potty training, we are at a really good place in our lives. We have many challenges daily and always will. However,  the strict, consistent night time routine that I do with the boys has had a huge impact on the way they sleep.  Since it is just me at home with the boys, I have implemented it daily and we are doing awesome!! Consistency is the key in helping children like my boys!!

Consistency is the key with autism!

Of course, things can change and Trenton's sleep could go south again. Autism is a mystery and his sleep has always been one of them. Potty training could go wrong too. The slightest bit of anything can throw Trenton off course....which is why I am very picky about what kind of stimulation, etc the boys receive. Just another reason why families like ours are trapped in our home...we do it for the sake of our kids and their progress. We have to!

Tuesday, June 21, 2016

When we know love we know how to give love

I John 4:7
Beloved, let us love one another, for love is from God, and whoever loves has been born of God and knows God

Deuteronomy 6:5-9  
          
You shall love the Lord your God with all your heart and with all your soul and with all your might. And these words that I command you today shall be on your heart. You shall teach them diligently to your children, and shall talk of them when you sit in your house, and when you walk by the way, and when you lie down, and when you rise. You shall bind them as a sign on your hand, and they shall be as frontlets between your eyes. You shall write them on the doorposts of your house and on your gates

Sunday, June 19, 2016

Autism & Vomiting

The other day someone asked me a few questions about the boys and I completely blew them away with my answers. This person had no clue of the things that the boys and I couldn't do because of their disabilities. I explained why and they were completely dumbfounded.

Sensory problems got brought up and I was trying to explain to this person about the severity of Trenton's autism and sensory problems....again...completely amazed. They had no clue.
The sad thing is, I talk about the issues on here occasionally but it is just a very short glimpse into the challenges that come along with an autism diagnosis.  Plus, I can't even come close to touching on the majority of the challenges that come with autism. This is just a short blog that I use to advocate and educate others on and finding the time to go in-depth is hard to find.....the boys come first!

With that said, I would like to raise awareness today of an issue that many people have no clue of that accompany an autism diagnosis. I have been battling a serious issue that can turn into a very serious problem with Trenton. Challenges come and go. Many challenges with autism don't occur till the child is older. Some challenges come and stay for while and then they leave. It is autism folks.....the best way to describe autism is ......the never ending, never changing unique disability.

A challenge that I have been battling for approximately the last 5 months with Trenton is vomit! Trenton vomits from time to time. No, he is not sick when he vomits. It is actually another challenge that comes with autism.


According to autismspeaks.com...Many parents report gastrointestinal (GI) problems in their children with autism. The exact prevalence of gastrointestinal problems such as gastritis, chronic constipation, colitis and esophagitis in individuals with autism is unknown. Surveys have suggested that between 46 and 85% of children with autism have problems such as chronic constipation or diarrhea. One study identified a history of gastrointestinal symptoms (such as abnormal pattern of bowel movements, frequent constipation, frequent vomiting and frequent abdominal pain) in 70% of the children with autism.

I battled chronic diarrhea with Trenton from the time he was born till about 4 years of age. I battled doctor appointments in STL with him....had his feces tested...did test after test to yet be told again..."It is just a part of autism. Many individuals battle this."

Around 4 1/2 years of age, Trenton went from diarrhea to constipation. It was day and night with Trenton and it was BAD. I battled him waking up in the night crying his cry that he does when he is in pain. Of course he can't tell me what is wrong....oh the battles of autism are just simply heartbreaking.  I have went through many laxatives, supplements, you name it, I tried it. I have seen this child cry for literally hours because he had a rock hard stool at the opening of his bottom and it wouldn't come out. He was in real pain folks. I have seen his bottom bleed from constipation. I have had to do things that only a mother would do to help my child through his constipation. As of now, that stage is gone......for now:) It can come back tomorrow, I just never know because it changes a lot.
I know it is easy for a neurotypical parent to read this and think, " all kids have diarrhea and get constipated." However, I am talking about an every day issue. Every. Single. Day. Every. Single. Hour.....it was weeks without having a bowel movement with chronic tears from the pain. It was changing 10 plus diapers a day with his chronic diarrhea. Nothing helped...NOTHING. Not medicine....no special diet...Nothing!

However, the next issue right now that I am handling with Trenton is his vomit. He will puke and it comes out of nowhere. Most of the time it is right after he eats or within an hour after eating. If he does not vomit, he gags a lot.

Vomiting is a very common issue among kids with autism and sensory processing disorder. The following website gave me great comfort in knowing my child wasn't the only one who has autism & SPD so severe that he vomits


As always when a problems arises, I do a lot of research to find out what is the best way to handle the situation. Sadly, sometimes there is nothing that can help...it is just simply part of the disability.



Friday, June 17, 2016

Pepper & Andrew

We have a really good routine around here.  After a certain time, it is quiet time around here. It has been hard but we are doing great! Just like everything with autism, it takes time, patience, and consistency. During quiet time, Pepper is always with Andrew:)


Thursday, June 16, 2016

Annie

It takes a lot of time and patience to build a strong bond with a person/child with autism.  So much more effort, time, and love has to be put into the relationship. A bond between a neurotypical child and a parent comes natural. A bond between a neurotypical child and another loved one or friend comes natural. It is simply built naturally. Nonetheless, a bond between a child with autism and a loved one, parent, friend, therapist, etc. does not come naturally. It takes a lot of hard work.

When I have wanted to just relax for 5 minutes while Trenton was being good, I knew that 5 minutes could be the chance that I could get some eye contact or some natural touch.....and in return...it could make a huge impact on my relationship with him. Therefore, I almost always never chose the 5 minutes break, I chose him instead.

All the extra effort has paid off in many ways. Trenton and I have a very special relationship.
However, another relationship that has blossomed over the past few months is Trenton's relationship with his lead coach, Annie. I have never seen Trenton do such lovable gestures all on his own before with anyone besides me.  Trenton is with Annie about 50-75% of his days at Harsha Cognitive Center. That one on one time between the two of them has most certainly paid off. Trenton greets her every morning with a love pat on her shirt, great smile and great eye contact. That is his way of greeting her. Recently, Trenton won't leave Harsha Cognitive Center without giving her a kiss or a hug spontaneously! T-man sure does love his Annie! To top it off today, Trenton said, "I love you" three times to Annie today:) This kid has one huge crush:) But, most importantly, Trenton is a very smart kid. He spends a lot of time with her and he enjoys the structured one on one attention that she gives him and he thrives off of it.  I always thought that Trenton had a very strong intuition. I know that from day one he has picked up on Annie's genuine, loving, caring attitude. I have been told that everyone at Harsha Cognitive Center is jealous of their relationship.  Annie is one lucky girl and Trenton is one lucky boy to have such an amazing lead coach! Thank you Annie for helping Trenton. You are doing more than I can ever repay you for!


Wednesday, June 15, 2016

A whole new world


As a kid, I could not have asked for a better life.  I loved living in the small town on a farm. I even liked the smell of pig manure. I know…crazy! I guess that is just how much of a country girl I was. In fact, I was a tomboy who loved to get dirty, sweat, play sports, keep up with my brothers, take care of my animals, and participate in any other good old fashion activity you can name. I would have even drove a tractor if my dad would have let meL

Then came my high school years and they were full of sports, dances, small town Friday nights of dragging main street, and so forth. I was that girl that was student body president, Sweetheart queen, one of the top athletes of my class, yet the girl that was nice to everyone and made sure everyone was nice to everyone.

After high school came my college and young adult days. They were mostly care-free days but I had my fair share of challenges and health problems. I learned along the way, dated a few of the wrong guys, took advantage of living life with no worries yet I remained grounded in my faith and always carried my strength through God. Before you knew it, I was walking down the aisle in a white dress marrying someone who I thought was committing himself to me for the rest of my life. Little did I know that it was the beginning of a whole new chapter in my life.

After chugging along in my new chapter in life that brought me two children with special needs and a divorce, I have learned more the last seven years than the whole previous twenty eight years before.

To be perfectly honest, the list of what I learned could go on forever. However, the one thing that could sum it all up in nutshell is the pure fact that my new chapter opened up my eyes. In my pre-autism days I thought I was a thoughtful person and I was but my compassion and empathy for others are looked at on a whole different level now.  I don’t think one can be on that level unless they go through some life changing heartaches in life. The true act of appreciation is measured beyond words for me now. I see things differently and always will. I know what it is like to live a life and then to have that life taken away by a life changing disability.  I know what it is like to raise kids who fight the hardest of battles daily. When you walk in those shoes, you are a changed person yet a much better person who is the definition of appreciation.

I am physically the same person before my new chapter started.  In my pre-autism days I didn’t have two dependent children with special needs that needed me 24/7. Now I do. With that said, my priorities are different. I have been forced to change for my two little blessings that call me mom.

I wonder what I would have said if someone told me then what I would have went through and still go through daily now. Would I have believed them? I don’t know.

Deep down I am still the small town, country girl. I still have that loud, boisterous laugh.  I just don’t have an opportunity right now to be that person. Will I ever be that person again who gets to sit at a baseball stadium and watch my favorite team without the worries that I have now? That is a question that is yet to be answered. However, what I do know is that I have my world in the palm of my hands and it is all I need. Their names are Trenton and Andrew. Yes, they have special needs. Yes, it is a whole different life than I had before. However, God knew what I needed and what I could handle.  He led me to this life and it is my decision to embrace it and see what good we can make out of it or run from it.  I am embracing it and going above and beyond daily for the boys.

  My whole world is my boys, their autism challenges, and a life spent on helping them to be the best that they can be.

It is a whole new world that’s for sure! I am bound and determined to make our new world the best that I can. It comes with daily tears, struggles, and heartache. But it is ours and I am proud of it!


I was pregnant with Trenton in this picture. Little did I know then that I was carrying the beginning of my new world inside me:)