Friday, May 30, 2014

We continue to survive!



This week has had its ups and downs like always.

Trenton had his last day of school this week. Therefore, we are adjusting to a new schedule which is very hard for him. Trenton spent a very large part of  Wednesday, Thursday, and today crying. His crying is getting much worse and his mood disorder is really getting worse. He can't communicate at all why he is crying to me. I can not even begin to express what it is like watching your almost 4 year old just walk around crying all the time. I have no idea why he is crying which is emotionally draining on me.  He could be crying because something hurts....or that he can't communicate to me and knows it.....or he is just processing something that happened earlier in the day that hurt his feelings....etc. etc. Last night he cried and fussed for consecutive hours!!! I had to give him two car rides yesterday and a car ride to calm him down at night to go to sleep.
He cried during one of his therapy sessions this week. He cried and made his upset noises all the way home from therapy almost every day this week. It is constant. It is very comparable to listening to a colic newborn baby.

However, he did do well in a lot of his therapy sessions this week. He is getting really good at repeating back " I want" during his sessions. He still continues to be good at repeating back "yes". Other than that, he is mute when it comes to verbal spontaneous speech. It takes lots and lots of prompting at home to get him to repeat back a word on most days. There are those random moments when you might hear a word and I love them when they happen!!

Andrew has definitely had some rough patches this week. I listened to one of his speech sessions and almost everything is just repeated words or phrases. He did not use to do this so much. His learned speech and repeat speech is really bad. It is really sad and disheartening to listen to him just walk around our house saying..."bye bye" when no one has left....or "all done home" when we haven't left....or " all done 4-wheeler ride" when he hasn't even taken a ride...his language is all learned phrases. He can not verbalize spontaneous speech.
With that said, it makes our days very chaotic when Trenton is completely non-verbal with very, very limited ways to communicate and Andrew is unable to express what he wants because all he knows is learned speech. Therefore, many moments are spent with two crying kids who are unable to calm down because their bodies won't let me. Of course I have good reason to pull my hair out each day:)

Here are the boys on Tuesday which was Trenton's last day of school.


 Here they are on the way home from therapy on Thursday. Thursday was our first attempt with only Mommy taking both of the boys by myself to therapy at the same time. We survived and did really well. The key is to get Andrew out first because he wants held, then I get Trenton out with a death grip on his hand.

The boys get a reward from Mommy for working hard in therapy each day. Andrew received his reward for working hard by eating a glazed doughnut. He loves glazed donuts and he TOTALLY expects one every day after therapy. In fact, he starts saying "doughnut" on the way to therapy because he knows that is his reward.

 

 Trenton's big item this week was some of his favorite DVDs. They went every where with him.  It's really sad if you think about. A child who likes to just carry around DVDs. His items of  the day or items of the week just make him feel more comfortable.
 We found a nice playground that is almost autism friendly in Effingham. I let him play on it some days after therapy for a few minutes before we head home.
 What I mean by autism friendly playgrounds is this.....if a nice big playground has open spots in it...Trenton and Andrew try to jump off or they would just simply walk off the piece of equipment and either hurt themselves or kill themselves. Going to a park and trusting your child on the play equipment is not even possible with autism. Autism knows no danger and their brain does not let them think about danger and what could hurt them.


Nana and Pop bought the boys a pool this summer. Trenton loves it and Andrew is not so sure of it yet. If he gets in the water, he wants held and will not get down by himself.

 I loved this moment... he was looking right at me smiling.


Tuesday, May 27, 2014

Carly's Voice

I have recommended the book, Carly's Voice numerous times on my blog. I just admire how this father portrays his family's story in this book. What this family went through is exactly what we go through every day. This book informs the reader of a great wife/husband relationship on how they stuck by each others side every minute of Carly's life, researched together, up during her sleepless nights together, and so forth.  In fact I am reading it for a second time right now. Carly reminds me so much of Trenton. I wanted to share a few short paragraph.

The first page he gives just one small example of his nights with Carly.



Monday, May 26, 2014

What is possible with autism?

I know most people have heard of seasonal depression. Most often seasonal depression hits in the winter time when you can't get outside to do anything because it is cold. Families raising children with autism, have seasonal depression every season because they can NEVER leave their house but it is more so this time of year.

 On Friday I spent a lot of time in deep thought about what it would be like to have neurotyical children and to have a normal family life. Many families welcomed summer this weekend having picnics at the park, picnics at the lake, weekend getaways,etc. This is only the beginning to memorable family times for normal families.
When I think back to my childhood it brings a smile but also some tears to my eyes. A few things that stick out in my memories are the times my mom and aunt loaded me, my brothers, and my cousins in a car and headed to Holiday World for a fun day......and the days that my family and our family friends headed to Carlye to the water slide for a day of family fun......riding my bike up the road to my aunts to swim all day with my cousins.....or the few family vacations my parents took us on.....all I have to say was...THOSE WERE THE DAYS!

None of that is possible right now with two boys with autism. Honestly, I am afraid those days will never  be possible for this family of four. We have been doing therapy for two years and yes we have made progress but we have a long way to go. A VERY LONG WAY TO GO with Trenton and if Andrew keeps up with how he has been progressing lately we have a very long way to go with him too.
My mother hood experience that I always dreamed about is NOTHING like I thought it was going to be. At least I had 30 years of a normal life where my boys have none.

Every day I daydream about normal family life. Lately I day dream about the small things such as packing up a cooler of sandwiches, chips, and juice boxes and taking it to the lake and sitting on a blanket while eating our lunch. Something that small is not possible with the boys. They would sit still for about 10 seconds and then Trenton would start running away without looking back. He would run right into traffic, right into the lake without even giving danger one thought. Andrew would either follow him or he would be stuck to my hip fussing and crying because he is so unsure of the world and scared at everything that he is unfamiliar with. Something so small is not even close to being visible to our family. It haunts me every second of my life that the boys can't enjoy even the smallest of pleasures about being a kid.

Instead of summer fun we will be found in our prison cell leaving our autism life. The sad thing is that is how I want it and how the boys want it. Nothing is fun, its all hard work. Getting out is more of a punishment because you see normal kids with their parents. I even hate getting groceries because I am slapped in the face with that sight every time. How can I expect anything to be fun when going out in my back yard takes major planning and is only possible with assistance from Nana. I simply can't take the boys out in my own yard!!!!!!!!!!!! If I do, Trenton runs one way and just keeps on running and Andrew is once again scared and attached to my hip. Running full speed with  thirty pounds on my hip chasing after Trenton who has the speed of an Olympic runner already is not possible without major strategic planning and assistance. So why in the world would I expect anything else, anywhere else when nothing is possible in my own back yard?

With that said, Nana and Pop made a picnic happen on Friday night. Andrew was great to sit at the picnic table and Trenton lasted maybe 60 seconds total. I once again.....like always....was left to chase an Olympic runner around the farm.

 Trenton has had a pretty awful weekend. One of the only things that could comfort him was this toy in the picture below
 Andrew has to always have something in his hands like the picture below.
 I tried and tried to get a few good pictures of Andrew. The only ones with a good smile are  the next two pictures. To get this smile with him looking at the camera was A LOT of hard work,

 We did have a few seconds of fun today and it was literally a few seconds....


 Since making trips to the zoo is impossible, Nana and Pop are bringing animals to my boys!!! The boys love the goats that we have now.




 We tried a picnic today again. Andrew sat and had fun with Lincoln but Trenton would not join. Mommy and Trenton were inside almost the entire day.

Now to be perfectly honest, there are days I want to take this silly blog and erase it all. I totally mean that. Why? Well, it does not do justice what life is like with autism. For example, by just looking at the pictures on this post you might think that we are completely normal. If you read with an open mind, it says a completely different story. However, even words on this blog can not put into words what it is like. In between all the cute pictures is nothing but heartache, loneliness,worry, sadness...do I really need to put down any more adjectives than those? My list would be endless. Because between all the cute pictures is nothing but...............hearing non-stop screeching noises from Trenton...listening to nothing but learned repetitive language from Andrew and if he doesn't have any learned language for the situation that he is in he does nothing but scream and say "no" .........being up around clock and wondering when the next ten minutes of shut eye might be....its watching Trenton take his fist like he did last night and pound his skull over and over and over and over and over and over and over while I am constantly redirecting him while I listening to the awful sound that my child's fist makes on his own skull......its trying to teach my 2 1/2 year that we don't eat poop.......its trying to teach my 2 1/2 year old  how to hold a spoon and fork that he once knew how to do but he lost it when autism took over......its having the patience for Trenton's new "stim" which is watching only the first two minutes of his favorite 6 DVDs while I am the one who has to take the DVD out and put the new one in for two minutes while I then take that DVD out and put the next one in for two minutes and so forth....and so forth...........and so forth............so much more to add to this paragraph but I would be on here for the next three hours.
Therefore I will end with this......

On some days all I hear is "pops tractor" out of Andrews mouth. Well, he took a ride this weekend and loved it




 



I do nothing but chase Trenton and I let him just run for awhile this weekend and he loved it

 


Thursday, May 22, 2014

Updates from the week.

First and foremost, I want to announce that history was made last night at the Conrad household. Both boys slept!!! Can you believe it?!?!?!? I only had to get up one time to check on Andrew when I heard him crying and he ended up putting himself back to sleep. If only every night could be like that!! I will take it when I get it and I am very thankful for last night.

Trenton has had a rougher week than last. He has had several sad moments again this week. He will randomly start crying and can not stop for a very long time. He just keeps on crying. Children who have autism like Trenton does and who have the modulation problem like he does may have days where they process what happened 6 hours earlier...6 hours later. He may not have liked something that went on earlier but his body is just processing it hours later. Can you imagine? I can't! This explains why Trenton holds himself together in the mornings and then releases by mid-afternoon and evening. By mid-afternoon he is hitting himself in the head, hitting his legs, hitting anything he can gets his hands on, pacing up and down the length of our house, running all over the house and getting on top of every piece of furniture that he can, or crying until he can releases it all.

He has not tried to say as many words this week. However, at school he has verbalized what he wanted for breakfast after he was given two choices!

Three days this week he has shown me signs that he is happy to see me! On Monday when I picked him up from school he ran to me when he saw me. On Tuesday he gave me a happy look. On Thursdays Ms. Jenny brings him to me in the parking lot because I have Andrew with me and it would be nothing short of a pure disaster trying to manage Andrew while picking up Trenton. When Trenton noticed that I was not where I normally am to pick him up, he started crying. When he saw me in the parking lot, he was happy to see me!

I have mentioned numerous times how Trenton can not tolerate anything foreign on his skin. This past Sunday night was another reminder of how bad a situation can turn with Trenton when he can not comprehend what is going on and when foreign things appear on his skin. I wonder what would happen if something major happened to Trenton since he reacts like he did Sunday to a small cut. Needless to say early Sunday evening he cut his little finger. Of course I do what most moms do even though I know it won't go over well which is put a band aid on his finger. A band aid on his finger sent him over the edge. He ripped it off while screaming louder than any high pitched opera singer you can find. Once the band aid was off and he saw the blood coming from his finger it was all down hill from that point. He was in a panic stricken way for the next three hours until he fell asleep. I was in a no win situation......he couldn't handle the band aid and he couldn't handle seeing blood on his body. I tried my best to apply pressure and stop the bleeding but that is easier said than done when you are trying to man handle a very strong boy with autism that had adrenaline pumping through his body stronger than any adrenaline rush junkie you can find.  To go without saying, I was glad when he was asleep and the situation was over.


This week has been a little hard on Andrew as well. He is adjusting to ST and OT on Wednesdays and Thursday for the most part. He made a very ugly scene at therapy on Wednesday. A scene that I am quite use to having with Trenton. Andrew is harder than Trenton to transition and on some days it is very difficult for him to relax after a situation has upset him.  He simply can't let a situation go. He got upset in OT and caused a scene that left a lot to be desired. He was on the ground squirming his body, resisting everything that Emily and I were doing to help, crying, yelling, and hitting. At one point during the autistic tantrum he took his car and threw it harder than I have ever seen him throw anything. He missed hitting a gentleman in the head by what seemed like only centimeters away. Of course I got the look from him that said, "Can't you control your child lady?" I gave my normal, "I am so sorry sir." sentence while flashing him my nervous smile. What I really wanted to say was, "Don't you dare give me that look sir and don't you dare say a word to me.  I do not live any type of normal life raising my two children so needless to say my fuse is short these days. I know you are thinking that I have an unruly child that I need to discipline more but let me ask you one thing. Would you ever give that look to a child in a wheelchair or his/her mother? No probably not! My child has no control of his brain because it has been taken over by autism. AUTISM! He has no control on how his brain lets him handle situations. A simply spanking or time out does not work. If it did work then my child wouldn't have autism!"
Instead of saying that, I quickly left carrying out a child in the middle of an uncontrollable autistic tantrum.

Andrew has quoted a lot of learned speech this week. Actually, I think his learned speech has been worse than normal. I think sometimes he is verbally stimming. For instance randomly tonight he said, "Mommy, Daddy, Lincoln, Uncle Brian, Aunt Mindy, Nana house." I tried to ask him why he was naming off people and I received no response and no look from him.
He will randomly walk around the house saying, "all done 4 wheeler ride. Pop's tractor." He has not seen Pops on his tractor in a long time and no 4 wheeler ride but he has learned to say this so he just says it.
This morning on the way to therapy he started saying, "time to work." This is what Jill tells him during therapy when he gets off track. He knew he was going to therapy so he started saying what he is told in therapy.

Emily, the OT, confirmed that Andrew has some sensory problems that are similar to Trenton's. I was afraid of this. I knew in my gut he did but I was trying to deny them until I was told. All I can say is...my poor babies!


Andrew has done a lot of lining up things lately. Trenton is out of that phase for the moment. It always comes back but right now it is just Andrew.






So cute sleeping!








Wednesday, May 21, 2014

Wendy

One of the best things about my journey into the special needs world is that I have met people that I never would have met if it wasn't for the boys.
Shortly after Trenton's diagnosis I was starving to talk to someone who was living what I was living. Someone who understood what living with autism was about. Someone to talk to. I needed someone before I slipped into a bad depression.
I signed up on an autism website for parents. A website you can talk to other parents and feel some support from. One mother that I immediately started talking to was Wendy. We talked every week and some weeks we talked a few times a week sending each other messages on the computer. Her little boy with autism is only one month older than Trenton. Over time we developed a great friendship. A friendship that will last a lifetime!
I am excited to say that I finally met Wendy face to face today!!!!!!!!!
Wendy and her husband are traveling from their home in Alabama to Chicago to attend an autism conference. On their trip to Chicago, they went completely out of their way, so we could meet face to face! I had been wanting to meet her for a very long time and we met today!
I am so blessed to be traveling this journey with an amazing mother like her.


Sunday, May 18, 2014

Tired boy

One day last week Andrew got evaluated for OT before he had ST. He was one tired little boy on the way home.
 The OT therapist wants to see him twice a week starting this week.

Andrew also had his 2 1/2 year check up last week with his pediatrician. He is getting to be a big boy! He weighs 33 pounds and is 3 ft 1/2 inch tall. What happened to my baby?
When Andrew is in a new or unfamiliar environment, he is a lot easier to handle than Trenton. Actually, they don't even compare. Andrew copes with the unfamiliar environment by lining his toys up over and over and over just like this...

Object of the day

I never know what the object of the day will be. It is always something different. Lately, it has been this.....


Watering Mommy's Flowers

These picture are from about two weeks ago. I simply do not have the time to post like I want to. Raising two kids with special needs take every ounce out of me. However, even though it is two weeks late, these are  cute pictures of Trenton watering Mommy's flowers.




Friday, May 16, 2014

Amazing Week for Trenton!

Trenton is in an amazing phase right now! He has had an awesome week!!!!! I love when he is in his good phase!! He has slept great for 9 days now!!!! He still has had difficulty falling asleep and has done a lot of crying but once he fell asleep...he slept like an angel!!

His speech this week has been priceless! Wow...he has said several words! I literally pinched myself to make sure I wasn't dreaming a few times. Most of the time he had to be prompted but that does not matter...the words came out!!! There has been many beautiful moments in this house this week. His voice is sooooo precious! Needless to say, I have heard "Mommy" this week!!!

He has also read several words to me, Nana, and Jill his ST.
He read all of his colors to me. I also heard him read cake, frog, bike, nana, and star. He read kangaroo and hippopotamus for Jill! Seriously? Kangaroo??? Hippopotamus??? Those are some big words!!! But at the same time it doesn't surprise me. He loves his animals and he has a photographic memory.
I would have to say overall he has had the best week in therapy in a long time. On Tuesday he worked with his ABA therapist for one hour without even trying to get out of his seat.

When asked by Emily, his OT, to draw a square...he did it! She showed it to me and it was beautiful. The most beautiful square I have ever laid eyes on. I instantly started crying! These are the moments that we work so hard for and they come as quickly as they leave us but when they happen...I cherish them and thank God for them. It's the things that most people take for granted but families like us, celebrate them. I sat in the waiting room and could not quit crying. I think my emotions was magnified by a little two year old girl who was in the waiting room talking in  full sentences to me, asking me questions, and she had just turned two! I was taken back to see what a neurotypical two year can do. Wow! The whole time I was in awe over her speech I couldn't help to think how adorable she was. I am often drawn to cute little girls. I would do anything if I had a little girl that was neurotypical who would be able to watch over the boys when I depart this world.....Anyway,  needless to say when Emily showed me the precious square Trenton drew, the tears came gushing down my face faster than any type VI rapid you can find in any river.

When we left therapy today I asked Trenton, "Do you want chicken nuggets?"
Trenton responded, "yes."
AMAZING!!!! Wow.....amazing! He answered me!!!!! I pray this phase continues. They come and go. Every time this phase comes I cherish it but I so hope and pray this phase sticks around for a while!

Here are some of the many ways Trenton has fallen asleep lately.







I love pictures of him sleeping. When he is asleep, he is away from his trials and tribulations from this world.

Mark 12:30

30 And thou shalt love the Lord thy God with all thy heart, and with all thy soul, and with all thy mind, and with all thy strength: this is the first commandment.

I have lots more updates this week, especially on Andrew. However, it has been an extremely busy week and I am tired!

Monday, May 12, 2014

Andrew is 2 1/2

Andrew turned 2 1/2 yesterday. Where does time go? When he was 18 months old I thought I would have it made by the time he turned 2 years old. Then he turned two and it was obvious something was going on but I had hopes it was just a bad phase and he would by okay by 2 1/2. Now we are at 2 1/2 and he has mild autism. Life sure can take a wrong turn in the wrong direction fast.

At 2 1/2 years old Andrew loves:
  • The movie Cars...No he is obsessed and it controls his life!
  • He enjoys the movies Toy Story, Planes, Monster University
  • He loves to eat scrambled eggs, yogurt, strawberries, hamburgers, potato soup
  • His favorite snack is fruit roll ups, any kind of fruit, fruit snacks
  • He loves suckers!
  • He enjoys playing with all of his Cars figures and Planes figures.
  • He enjoys playing with his trucks and tractors
  • He loves this time of year because he can watch tractors in the field from our house!!!
  • He LOVES to take 4-wheeler rides. I think he would ride on one all day if he could.

I was trying to get Andrew to look at the camera and the pictures turned out like this.

 In order to get good pictures of the boys, I have to do something that captures their undivided attention. Something extremely silly....and if I do that...I can get cute pictures like these.....




 Here is Trenton at 2 1/2. I think they resemble each other!