Sunday, August 31, 2014

Bookbag

Trenton is going to be EXTREMELY disappointed when he wakes up tomorrow, Labor Day, and we don't travel to Harsha. Tonight while he was pacing the house before bed, he wore his backpack smiling the entire time. He knows that the day after the day we go to church is Harsha day......He will not be happy tomorrow.

He even fell asleep with his backpack on in the middle of all of his animals.

Actually, tonight was the second night in row that he fell asleep in bed. Don't get me wrong, there was lots of fidgeting his fingers while he walked and paced the length of our entire house for who knows how long while we listened to one of his relaxing dvds....the poor child has to do it for countless minutes and hours to filter his day out. I can't imagine....its hard and gut wrenching just to watch him do it.

Here he is last night after his body gave up the fight...

Friday!

When I picked Trenton up from Harsha on Friday it was pouring! The rain was pounding down on the ground from the sky. The waiting area is all glass so when Trenton was brought out to me he couldn't wait to get outside. Trenton loves to walk in the rain. After I was done talking to his coaches, it was still pouring. I had two choices. First choice, to sit inside and wait til the rain let up to walk to the van. Or, second choice, to enjoy the moment and walk in the pouring down rain to the van knowing what joy it would bring to Trenton. Well.....what do you think I did????  Of course......I enjoyed the moment and we went out in the rain!!!!!!! I was drenched all the way down to my underwear for our ride home but it was well worth the huge smile and pure joy he had on his face the whole entire walk to our van! Loved that moment!!


Our selfie after the rain!

Trenton did a super awesome thing on Friday during his social play time at Harsha. From what I understand, another boy asked him to jump in the trampoline with him. Trenton did!!! He jumped in the trampoline with another boy and they "talked" and laughed the whole time. Hearing that melted my heart to say the least!

Friday, August 29, 2014

Hurricane 5.....Again!



It is really hard to explain Trenton's hyperactivity. To be honest, his so called hyperactivity goes to a completely different level than one can imagine. He does not have it everyday....... THANK GOODNESS! His hyperactivity is actually his body seeking some sensory input from his proprioceptive sensory.
 However, when it happens, the destruction he leaves behind is worse than a category 5 hurricane. The stress and anxiety it brings to Mommy would send most people on their feet running away from the situation and never looking back. As bad as it is to be Mommy and trying to meet his sensory needs that his body is craving...its WAY harder to be Trenton living in that body.

 Carly Fleischmann was able to describe what was going on in her body when she was like this and she described it as thousand of ants crawling on her body while her legs felt like they were on fire. Another boy described it almost the same way. He says his blood felt like it had millions of ants crawling in it. Therefore, they both said to get rid of the feeling they just had to keep on moving and destroying things. They simply couldn't sit still. They had to be a category 5 hurricane.  The constant motion and movement helped them with their sensory problems they were having.

This past Wednesday night was one of those nights for Trenton. I couldn't make him happy with anything and he was a hurricane in motion. With my back turned from him for only a few seconds, his autistic adrenaline had him on my kitchen counter standing in a matter of seconds. I got him down and he ran straight for our computer stand and got on top of it.....jumped down....and jumped up on the kitchen table....jumped down....ran across the couch and loveseat...jumped down....ran into the kitchen and pulled down the oven door which was warm and got a small burn that didn't phase him...ran and opened up our fridge and made his way climbing half way up our fridge before I could even get to him and I was only a few steps behind him! I got him down and off he went into his bedroom......jumping off his bed...standing in his window sill....running back into the kitchen....getting on the kitchen stove this time...running .....running...picking up toys....throwing them down....opening up closets and dumping out every toy tub he could find on himself....and then he was up running doing it all over again.

Mommy was chasing him every step of the way getting him down, redirecting him, saying "No Trenton." but when he is in a situation like he was on Friday with his sensory seeking problems.....nothing helps. It doesn't matter what I do. And we wonder why I am having health problems???? This particular night I battled a numb face the whole time....I wonder why? Oh and I didn't mention that while Trenton was a live hurricane....Andrew was part of the hurricane that got beat up repeatedly over and over and over....Mommy was trying to manage Andrew while doing the best I could to manage Trenton....NOT an easy task.

I should have taken pictures of our whole entire house but I was too embarrassed to. Instead, I took a picture of Trenton's room.....and his room was one of the cleanest rooms in the house after Hurricane Trenton went through. As you can tell, his closet door is open with all of his toys dumped out.





On to a few other things.....

Andrew had a line of cars, slippers, and stuffed animals last night. I could not touch his line. He just wanted his line in front of him while he played on his kindle fire.
Trenton's shoe fetish continues. Some days he does not want them lined up, he just wants them out of his closet where he can see them.


The boys have had a thing lately of wanting to wear Mommy's tshirts. When Andrew put one on the other day he looked at me with the biggest smile and said, "like Barbie."
He isn't smiling in the picture but he looks cute to me in my tshirt holding his favorite stuffed animals.

Thursday, August 28, 2014

Movin' On

I have mentioned before  several times how blessed we are with some amazing family! I want to talk about one particular aunt tonight. My Aunt Barbara Tackitt is a wonderful person. She has helped us out in so many ways since being on our journey of autism. She was a traveling nurse for thirty years in our rural part of Illinois. She is close to retiring and has written a book titled, Movin' On about 32 unique patients she has seen in her career. I am half way through her book and I can honestly say that her book is fantastic and a little on the funny side too! What is extra special about her book is the fact that she is donating the profit to my boys so we can continue to give them everything they need to improve the quality of their life. Wow! How blessed we are to have her as our aunt!

She is doing a great job advertising her book. Barbara wants so badly for my boys to get as much profit from the book as they can. I can't tell you how much that means to me!! However, lets' put that aside for now. I want to encourage everyone to buy the book to support my aunt! She is a great writer and was blessed with a wonderful career. Her book displays a funny, unique side to some simple life lessons!
And if you buy the book....don't forget to check out the back cover....there is a nice picture of Trenton, Andrew, and Mommy:)

Thanks Aunt Barbara!!


Here is a link to purchase her book!
http://mascotbooks.com/mascot-marketplace/buy-books/bios-and-memoirs/movin-memoirs-traveling-country-nurse/


Amen!

A ruff journey indeed

Superhero

When we picked up Trenton and Andrew from Harsha on Tuesday, Trenton had an adorable cape on. He loved it!! He wore it all the way home. He looked like a superhero....which he is!


Tuesday, August 26, 2014

Asleep

So what happens when your body does not allow you to just lay in bed until you fall asleep because your body is going 100 mph and won't stop pacing...and you have to walk and walk and walk until you filter out everything from the day????

 You simply fall asleep anywhere and anyhow the second its all out of your system!


HE LOVES HAPPY BIRTHDAY

On Sunday, we had a very short celebration for Trenton. He still had a few presents to receive from Nana, Pops, Uncle Brian, Aunt Mindy, and Lincoln.
It was a very short last minute party. Our heart was with Pops who was in the hospital battling some health issues.
However, we pulled it off and Trenton loved it!!! When we started singing "Happy Birthday" he was SO excited! He smiled the whole time. Mommy was so excited I cried and couldn't even sing. This was the first year he has liked being sang to. Do you know how amazing that is?!?!?!? Its beyond amazing! He loved it and to see his smile and emotions made it worth the wait!

Just look at his expressions!!! How could I not collapse and cry with joy?!?!?




Lincoln enjoyed the cupcakes too!
The big 4 year old received a few more presents!!

The boys love this gift!!! Thank you Wendy!! We can't wait till the weather is under 100 so we can take it outside!


Loving on Aunt Mindy

Mommy is not keeping secrets.... and I am not ashamed to say that I am still having what I think are severe panic attacks.  The rates are alarming high with autism parents who raise children on the severe end. I hope with some right medication, my attacks will stop. A huge thanks to Aunt Mindy who came to my house Sunday night to help me because Tim was at work. Uncle Brian was with Mom at the hospital with Dad. Thanks to Grandma Great who came and sat with me on Monday in case I had another attack. We are blessed with amazing family that live close that is helping us get through our journey!
A big thanks to our church family who has helped us alot the past few weeks by bringing us food and assisting with the boys!

Saturday, August 23, 2014

Shoes!

Trenton has a fetish with shoes lately. He takes one shoe from each pair of shoes that he has and lines them up. The shoes also have to go everywhere we go. For instance, they went with us to therapy on Thursday, Terre Haute on Friday, and everywhere else in between.

 Andrew added his shoes in this line.
 Andrew's lovely line of Cars and Planes figures.
 This little guy fought going to sleep last night. He missed his Mommy I think. In fact on Friday afternoon he was telling Nana, "see Mommy."  He finally fell asleep on the couch next to me.



Friday, August 22, 2014

Dear Autism

Dear Autism

As I sit here spending my day in Terre Haute, I really do a lot of thinking about you. ( I am talking about the disorder not my boys.) My boys aren't autism. They are two beautiful boys who were perfectly normal until you crept in so slowly and took that away.

Thanks to you, Trenton is primarily non-verbal and Andrew's speech is very limited. Therefore, I spend many hours of my day racking my brain trying to figure out what Trenton wants. Do you know how awful that would be to know what you want but have no way of expressing it?

Thanks to you,  their brains don't allow them "wait" or have "patience" which leads to unwanted stares from people who think I just don't know how to discipline. In hindsight, if I can't figure out what Trenton is trying to communicate to me then the meltdowns begin.

Yes, thanks to you, I deal with a lot of tantrums and meltdowns. You took away their ability to control their behavior.....HOW DARE YOU!  Do you know what that does to a person????? Do you know the impact that kind of stress and anxiety does to a parent over time when they spend day in and day out with their children who have no control over their actions and are unable to communicate?!?!?!?!?

Thanks to you, Trenton can't feel his body in space, has supersensitive hearing and smell.

Thanks to you, Andrew has a very difficult time transitioning off of his normal schedule on some days.

Thanks to you, Andrew's life is focused on "objects" that he is obsessed with. I just want to hear Andrew say, "Mommy" first thing in the morning instead of  "bear and dinosaur" or "planes", or "cars".

Thanks to you, I can never lay my head down on my pillow at night and have full confidence that the boys and I will sleep till morning.

Thanks to you, Trenton is 4 and we are no where near being potty trained. Do you know how difficult it is to change a big 4 year old boy in a public restroom????  Public restrooms are not equipped for 4 year olds who are not potty trained. Andrew will soon be 3 and the act of trying to potty train him sends him into a frenzy...you see going on the potty is "different" and Andrew has a hard time of accepting "different".

Thanks to you I can't simply put either boy in their bed at night and tell them good night. It takes MAJOR time and patience to get the boys in the bed.....which is Trenton pacing up and down our house for several hours until he has settled his body down. If Trenton's not pacing, he is swinging for hours on end and Andrew is rocking with Mommy.

Thanks to you, Trenton is unable to sit and control himself in a restaurant. He can't filter out his surroundings that are so ever loud to him. With that said, we have never had a  family dinner out. Do you know how that takes a toll on a family?

Thanks to you Trenton can't even look at his mother in the eye. Do you know how hard that is on a mother?!?!?!?

My list could go on and on of my sarcastic "thank yous" to you Autism. However, I do have a lot to be grateful because of you Autism.

You have made me realize what is really important in life.
You have made me a much better child of God.
You have made me celebrate milestones that I would have never celebrated before.
You have introduced to me to some of the most fantastic autism and special needs moms. I never would have met them without you.
You have made me a much more caring person.
You have made me a super patient person.
You have taught me what "love" is all about.
You have taught me the true meaning of being a parent and the depths a parent will go and do for their children.
You taught me the true meaning of "empathy".
You sure have taught me a lot about the neurotypical mankind.


Therefore, if you would ask me Autism if I would take you away from my children, my answer would be yes. I'm not sure what parent wouldn't take away their children's disability if they could. However, my boys are pretty special angels that were sent to me. I love them just the way they are! So if anything, I really do have a lot to be truly grateful because of you Autism.

Much Love,
A really tired autism Mommy


Psalm 21:6
For thou hast made him most blessed for ever: thou hast made him exceeding glad with thy countenance

Wednesday, August 20, 2014

Birthday!!

Aunt Liz and Matthew are in Illinois for a few days. They, along with Grandma, came to see us in between therapies today.
Trenton had a good birthday. He opened some cards he got in the mail and had a few presents to unwrap as well! Of course, Andrew helped him open almost everything:)





 









Trenton's Birthday Letter from Mommy

Happy 4th Birthday Trenton!

I can't believe you are 4!! Then again, it seems like I have known you forever. I can't imagine life without you. Two and a half years ago we  entered into the world of therapy. Slowly over time Mommy has added a full load of therapy to your schedule. You are happiest when you are in a structured therapy setting. I LOVE to see you happy!!!

You have made tremendous progress over the years. I think back to the days when you literally did not sleep. Ninety percent of our nights were spent awake. If there was a video camera in our house recording what you and I went through...it would be a sight for sore eyes. Those were the days when you would fall asleep anywhere. You and I spent many of nights sleeping in the middle of the kitchen floor because I was so sleep deprived that when you finally closed your eyes for sleep, I collapsed on the floor by you. We not only slept in the kitchen floor but almost every floor of every room in our house. That was also the period I spent a good majority of our nights cruising the country roads trying to calm you down because all you could do was cry. WOW...look at you now!!! We no longer have to drive in the middle of the night for hours on end!!! You have not went through a period of not sleeping at all for a long time. Yes you still have a lot of sleep problems but they are NOTHING to what it use to be like for you!

I am so proud of you!  You have made HUGE strides. Our successes are not like neurotypical kids but that is ok! We celebrate the small things and appreciate the very minute things in life.

I could not be more proud to walk this journey with you. In fact, I think we have a pretty awesome unique life. I know you want to be like other kids and I would do ANYTHING if I could make you be like them. You and I don't have to speak words....we just know don't we Trenton? I see your occasional glance at kids and family members. I see you looking at them from the corner of your eye just anticipating when they will engage with you. You speak many words without speaking.....Mommy knows!

It's so hard not to think what you would be like if autism didn't take over. The past few weeks have been so very hard on me. This should be your first year of Pre-K. I want you to go to school this year so badly!! I think of it almost every day. You loved your ECE classroom last year. I wish your life was so easy that you could just be a normal kid with a normal childhood. I pray deep, fervent prayers almost hourly for you Bubba. They are being heard...we just wait and see what God says.Although you aren't going back to your ECE class, you love Harsha! I am very excited to see what we gain the next year by attending there.


I know through your hard work and through your amazing work ethic we will continue to make huge gains! I anticipate  the day you will walk up to me and look into my eyes and say, " I love you mom." Oh my goodness just thinking about it brings me to tears! We will get there Bubba!!!! WE will!! I promise!!
I know you will.....just like I know one day you will be able to manage your body and communicate your needs to us. Oh Trenton, those will be such glorious days.

The battles you fight daily will pay off....we just have to keep on going and let God manage it! God has done some TREMENDOUS things for us. We have been truly blessed!!

What I want you to know most on your 4th birthday is how amazing you are!! You are not only amazing, you are strong. You are by far the strongest 4 year old that I know and I have the pleasure to be your MOMMY!!!! God is good......he put us together!
I wouldn't trade all my sleepless nights, stressful days for anything!!! You are my one and only Trenton!!!
I love you Bubba!!!
Always and Forever!!!

A few pictures of Trenton's journey in this life so far...


























You are growing up fast Bubba!!! Makes Mommy sad....but we sure do have some good times in all of those hard times.