Sunday, September 25, 2016

Pepper

We have the best cat ever!! Seriously, look what she let Andrew do to her yesterday. Pepper was part of his bridge for his cars. He thought it was so awesome that Pepper let him do that.
 It's been awhile since Trenton has laid down in his animals. Yes, he is in that picture just look closely.

Frustrations of a Spectrum

I have been thinking a lot lately on just how different every single person is with autism. Obviously, I know every person who lives on this planet we call Earth is different. But, seriously folks, autism is a disability where every single person is completely different and that plays a huge role of why it is so hard for people to understand. When we think about other disabilities, they are much more comparable to each other than individuals with autism. My two boys are just one fine example of how you can't compare two individuals with the same diagnosis.

I am involved right now on an autism acceptance committee and there is going to be an autism event in October in the town we live in. The event is going to consist of a lot of vendors for families, such as mine, to meet and get information on. A few of the vendors and sponsors of the event are planning games. GAMES?!?!? I'm glad there will be games for all the "typical" siblings there and for the kids with autism that can do that. But, it is not going to happen with Trenton but it may for Andrew. Trenton is unable to do anything like that. Andrew....he may be able to but he has a very hard time with following directions. If he gets it in his head that the game isn't going the right way, he is likely to go into a frenzy and cause quite the scene.  My mind can't fathom games. I know there are several kids with autism who have autism so high functioning that they can handle the games, especially if they are older. As of right now, anything that is close to what neurotypical children do....well....we can't even come close to doing it. That is one area why this disability is so beyond frustrating. BEYOND FRUSTRATING!!!!!!!!!!!!!!!!!!!!!!

With that said, being able to even take my child to an autism event is HARD work. I have every year since 2012 but he doesn't last long. While he is there, he will be pulling away to go home. He will make his upset noises. He will cry. He may go into a meltdown. He won't stand still, he will constantly pace...CONSTANTLY. He won't even look at anything. His body will be doing what we can't even fathom. So, why try?!?!? Why even put him through that?!?!? Well, I'm simply not. Life is going too good for our routine to put that stress on him. It might just be enough to get him out of his routine and yes it just takes one simple thing like that to totally mess up his sleep pattern, etc.
Yet again, this leads me to the questions, How do people take their child with severe autism to autism events?  I don't know. I am always involved in the events because I enjoy raising awareness for my boys disability but it is hard when your child can't even participate in the event.

I have came to the conclusion, that every person with autism at autism events are on the mild to moderate end of the spectrum. If they do have severe autism, they are not severe in their anxiety and/or sensory processing challenges. They simply can't be!!
Since I have been doing events the past fours years, last year was the first year that I saw an individual with autism pulling away from their parents, pacing, and doing exactly what Trenton does. This person was a grown man. I know this man and I wonder if that is the way Trenton will be when he is an adult?

I talk with a lot of parents of children with autism. I love it!! We learn from each other and share ideas, etc. Honestly, I have only met one family in the four years of talking to other autism parents that had a child with autism where they can't go places due to their child's severe anxiety and sensory challenges along with their autism.
I am very blessed in many ways. Both boys could be a lot worse. However, it doesn't make it better when your child falls into that very small place on the spectrum where you are literally stuck in your own house because their disability doesn't allow them to go places. It really stinks! I am sure if I challenged you to stay in your house every hour of the day except when you are at therapy and the grocery story for two weeks, you would get cabin fever! Guarantee! I am used to it, doesn't mean I like it but I am used to it. I have learned to accept it but it doesn't mean I don't hope for and pray for a huge breakthrough for Trenton one day where we can attend events and feel like a somewhat "normal" family even if it is just for one hour!
Every time I see a child or adult with autism that is out in public, my heart is so beyond happy for that family because there are many families who are forever stuck in their own little bubble because they can't go anywhere!




Friday, September 23, 2016

Apple Orchard

Andrew is like me and he loves fruit! We have been eating lots of apples lately. In fact, Andrew told me this week that apples grow on trees. Then he asked if the next time we bought apples if we could pick them. I loved his idea!! So we went to the apple orchard today and picked our own apples.


Andrew picked most of them! He LOVED it!!




Thursday, September 22, 2016

Bonding

Two straight days this week, Trenton has only wanted to do things with Andrew. My heart melts...SERIOUSLY!!!! Trenton goes up to Andrew and takes his hand and leads him to where he wants to go. Andrew doesn't know what Trenton is doing so I remind him that its Trenton's way of talking. Love these two boys and love how they are bonding in their own "special" way.




 Crazy hat day at school yesterday. He was too nervous and anxious to look at the camera and he only put on a fake smile. Poor child just hates going to school.....its a chore every morning to get ready to go but we are making progress!

Sunday, September 18, 2016

Baby Steps Are Happening!

Every single day I wake up and think, "Oh please Trenton let's just keep our good phase and baby steps going." I know all too well how he can go from a good phase to an extremely bad phase in the snap of a finger. I will never understand it but as I always say , "It is what it is." I can't do anything about it other than adjust to the day and do what our day needs.
The baby steps that Trenton is making these days is phenomenal. I do think one thing that has contributed is the consistency that I display with the boys.  It is just me and the boys. I know what is best for them and I do it every single day even if I don't want to. The rigidness in the routine is so monotonous. There are some days that I just want to scream because I am so tired of doing the exact same thing all the time. But, look at the progress we are making!!! I am pushing myself through it because I know it is the best for the boys. It is really amazing when I look back on my daily notes and see how both boys behaviors change when we go out of our consistent schedule.

One area that I spoke about in my book is church and how it has been so brutally hard. Where many parents gave up, I didn't. I pushed through the hard times because I knew if I ever wanted Trenton to attend church I had to push through the hard times. If I gave in and quit, he would know exactly  what to do to get his way. (A lot of information on this that I hope to post about soon to help parents understand the behaviors to give in to and not to give in to.) We have made numerous scenes in church. In fact we have totally disrupted church I don't know how many times. Trenton has ran on the stage with the preacher and song leader....which led to me running down the isles to get him.  I recall leaving church a few times crying uncontrollably because I couldn't control Trenton. He has thrown food and toys at people a few rows ahead of us and there is nothing to do other than just give a nice nod to the person we just hit in the head. You name it, it has happened. But now, six years after the battle, we are finally going to church and it is going better than I ever thought was possible! Never in my wildest dreams did I think that Trenton would be doing as good as he does in church as he does now. I have a fantastic church that has went above and beyond to make it happen for us. They are amazing and I can't thank God enough for leading us to them.

The boys know the routine of holding hands that I have been consistently displaying with them the past year when we are out in the community. Today we got out of our van to walk up to church  and without me giving them any prompts, Trenton took my hand and then he reached for Andrew's hand. I have taught the boys that Mommy holds Trenton's hand and Andrew is my helper and holds his other hand. It works fantastic!!! My heart melted when Trenton reached for Andrew's hand without me even telling him!! The bond they are building is nothing like neurotypical children but it is precious. Andrew really does help me look out for Trenton and Trenton really is showing Andrew love these days. I am so blessed!!!!!

All of this hasn't came naturally to us. Nothing does! When I say it is hard work, I mean it is hard work. Like I said, the majority of parents would have gave up. I have gave myself health problems because I was so determined to NOT give up because I knew I couldn't and I knew we would never achieve these small goals if I gave up.

So, to the parents  out there wanting to give up...DON'T! I speak first hand telling you that I know what it feels like to be up around the clock and never sleep. I know what it feels like to push through the physical and mental exhaustion. I know what it feels like to walk in church with the fear and wondering what will happen today....or asking yourself "Wonder how long we will last today?" I KNOW!!! I know the heartache of having a child who you think will never get potty trained. I know exactly how hard it is!! But, please don't give up.  If baby steps are starting to happen for Trenton then I know they can for your child because I have been through H-E-L-L and that is no exaggeration!!! Autism is diagnosed on a 1-3 scale with 1 being mild, 2 moderate, and 3 severe.  Trenton falls in the 3 category in every trait. His needs are severe. If we can do this, I know you can too. It will just consume every minute of your life and I know how much that plain stinks! However, it is the life you have been handed. Nothing was ever guaranteed to us so just do what you have to do to get by and make progress! One day you will start seeing the light  that you have so hoped for and it will be simply beautiful!


I continue to work with Trenton and going to public places. We still have a very limited number of places we go. I don't want to introduce a new place to him yet because we haven't mastered the ones we are working on. However, we are still doing great!

 He holds my hand like big boy:)

 This picture is from church. Most of the time Trenton stands up during church and sways back and forth while he claps his hands and makes his happy noises. Today he sat down a lot! So unusual for him. I was so happy, I had to take a quick pic:)
 
There are two elephants in town so we stopped to see them after church. Trenton took one look and said, "elephant."

      

"For all these things the nations of the world eagerly seek; but your Father knows that you need these things

Friday, September 16, 2016

Andrew' Challenges becoming more obvious

The average age for a diagnosis of high functioning autism is between the age of 6-8 years old. I am very fortunate that I got Andrew diagnosed at the early age that he was. I often wonder since I was  proactive and didn't live in denial if it saved Andrew in a few areas.  Nonetheless, Andrew's diagnosis of high functioning autism is getting very noticeable as he gets older. Sadly, it is harder to find the correct therapies for him because he isn't severe enough for one on one ABA therapy yet he needs supports in so many ways.

Ever since Andrew has started school, there has been a decline in areas that he shouldn't be regressing in. His repetitive behavior is getting worse and I believe it is his way of dealing with his anxiety and his challenges. He wants to lock himself into his "obsession" so he doesn't have to deal with his challenges because he is smart enough to know that he has challenges.

 The main difficulty with Andrew is with social interactions. Naturally, this may not be obvious at young ages when social settings are simple. Think about how preschoolers play together – say, running around pretending to be superheroes. Now consider a group of 8 year olds – or teenagers! As the “rules” of social behavior get more complex, problems with social interaction become more obvious. I already see this becoming more obvious with Andrew now and he is almost five. A year ago at 3K preschool Andrew blended in much more than he is this year. Andrew wants to be social but he doesn't know how to and his challenges such as repetitive behavior, OCD, and his obsessions take over while he is trying to play with the other kids and it simply ruins the situation for him. If it is this much more noticeable this year what will it be like next year?!?!?

The other day at a play place here in our town, Andrew was attempting to play with two other kids. They were 3 and 4 yeas old so it was perfect. Andrew's challenges took over and the situation was soon ruined for Andrew and he withdrew from the two children and became upset.

The kids kept on going down a bounce house with three slides on it. Andrew went down the slide farthest on the right side the first times while the other two kids went down the other slides all at the same time. All the slides were right by each other. The kids loved it and they kept on wanting to go down the slides. Andrew was fixated on the slide he went down first. However, the other 2 kids kept on wanting to change up and take turns. Andrew wanted nothing to do with the other slides. He wanted the one he went down first and that one only. When the other kids went down "Andrews slide" he became very upset and soon he simply couldn't even talk nor play. He was done. His body couldn't adjust to what happened other than shutting down, so he just shut down and stopped playing with the other kids. He cried and cried. His day was ruined and he had a very bad rest of the day. He couldn't get past what happened. Therefore, he did what comforted him for the rest of the day and it was his repetitive behaviors.

This is just one example and sadly, situations like this happen daily for Andrew which is why he isn't a fan of school.
Andrew is like many kids who are high functioning where he has a difficult time talking to his peers but can get along with adults much better. In fact, I had a lady yesterday say, "He acts and talks like he is a 30 year old." Yes he does which is not funny to me. He needs to act and talk like a 5 year old but that just doesn't come naturally or easy for Andrew.
To recognize high functioning kids social difficulties, one may need to observe how they interact with their peers. Too often people judge or say they don't think anything is wrong because they don't see the child with their peers and that is the key to seeing their challenges.

All in all, I am very fortunate for the early diagnosis because if Andrew still didn't have the diagnosis like many kids with high functioning don't at his age, then we would have many more problems than what we have already. However, the older he gets the more challenges Andrew has and the more I realize the very long, tough road that Andrew and I have ahead of us. However, he has a Mommy that won't stop. We will just keep on looking for social therapies and other ways to help his OCD and repetitive behaviors because the more and more that he is out of his comfort zone ( in school setting with peers), the more and more these behaviors get worse.


Below is from a website that I came across today and I thought it explained things very well.

How Much Support Does a "High Functioning" Individual Need?

While few people with "high functioning" autism need help with toileting or basic hygiene, they may very well need a good deal of support in other settings.  For example, a very bright individual with severe sensory issues, anxiety, and perseveration might actually have a MORE difficult time in the workplace than a less intelligent individual with less anxiety and fewer sensory issues.

What's more, a "lower functioning" individual might spend most of their day in a supported setting where the possibility of dangerous interactions is almost zero. Meanwhile, the individual with "high functioning" autism may need to navigate a world of complex and hazardous situations. Who needs more support under those circumstances?






Yuck!

Never thought the word "yuck" would be so beautiful! Just one little word can put such a huge smile on this Momma's face:)
Trenton said "yuck" to his cold chicken nugget at Harsha Autism Center this week and I was elated when I heard that he did this and so were they!!
Such a small little thing but so huge for us!!!
So blessed by the word yuck right now:)