Tuesday, September 30, 2014

Declining Behavior

I would like to give an update on Trenton's behavior. I know I have posted on some of his behavior lately, however, I would like to express the seriousness of his declining behavior. Yes, Trenton has accomplished many great things lately. For example, on Saturday while we were outside playing, he ran up to me, touched my legs and said, "Mom". On Sunday, while we were out side playing after church he randomly ran up to me and looked me in the eye and said, "I want Mommy." A few minutes later, Daddy came outside to see the boys for the day before he went to work, and Trenton said, "Daddy." This was great! I believe it is the first time he has ever said, "daddy". I have also gotten Trenton to repeat a few words lately such as, "Bye, Pop", and " love you", "love Nana", and  "love Mom". This is all wonderful!! To top it all off when I picked him up at Harsha last night he actually put his arm around me and hugged me!!!! God has truly blessed us with these moments!

However, his aggressive behavior, hyperactivity, and  impulsive behavior is all declining. In many ways he is regressing. This is very normal with autism. Autism is always a step forward in one area and numerous steps back in other areas. If Trenton is not in a structured setting such as Harsha, ST, OT, or ABA at home, his behavior gets very erratic. I can't control him and there is no way anyone can. For instance, not only is he running around the house nonstop, turning on faucets, jumping on my table, jumping on the computer stand, trying to stand on Andrew's bedpost, but he is also taking his hand and hitting everything off the countertops, taking food items and ripping them open and smearing it all over his body and empting his dresser drawers and throwing his clothes all over his room. I have to stay by his side every minute or we have a huge mess of some sort going on in our house......And we wonder why I have an irregular heartbeat and have to see a Cardiologist next week!?!?!?!

With that said, I can't be by his side every second of the day. I also have Andrew to take care of, lunch and supper to prepare, laundry to do, bills to pay, messes to clean up while another mess is occurring, etc. Our household is a Hurricane Trenton 24/7.  Trenton appears to be much calmer on Monday and Tuesday evening. Why?..  Well, he has had 7 hours of consecutive structured therapy.

I am very worried about Trenton's declining behavior when he is not in a structured setting. His brain is so very different than a neurotypical brain and he has to have structure 24/7.  I forget what a neurotypical child is like until I see one. Then it hits me and my emotions take over. A few days ago I spent a lot of time thinking about Trenton in a regular school setting such as Kindergarten. He is suppose to be in Kindergarten in less than two years. When I think about that......I think about how we aren't even close to being neurotypical...and probably never will......

I just hope that my blog not only helps other moms of severe autistic kids feel not so alone, but I hope it makes families of neurotypical normal kids realize how thankful and blessed they are! Really, we all have been blessed...we are just blessed in many different ways:)

Sunday, September 28, 2014

Pacing and Verbal Stimming

Here is a video of Trenton pacing our living room floor while verbally stimming before bed. This is what I wish every night was like. This video is from about two months ago. Since then, his behavior has declined and he is dangerously wild and destructive before bed. I would like to video a few minutes of his new bedtime routine but I have no time to video because I am constantly trying to keep him from getting hurt.





Friday, September 26, 2014

Dr. Twyman

Trenton had a doctor appointment today with Dr. Twyman. Unfortunately, that meant we did not have Harsha today. Instead, we drove west to Saint Louis.We discussed Trenton's highs and lows for about 45 minutes.  At the conclusion of the appointment, she decided to double Trenton's anxiety medicine which I think was a smart move.
Trenton's anxiety and sensory modulation disorder has been extreme again this week. His craving to chew on anything and everything that he can get his hands on has been bad the past three days. I have multiple chewies for him but he always wants something else to chew on. His body is craving deep, hard pressure a lot this week. Mommy is trying her best to keep him as comfortable as he can be while dealing with his battles. On Wednesday and Thursday this week, Trenton was a little more difficult in his therapies. He was either aggressive or very quiet.  Such a strange disorder isn't it?!?! We literally never know what one moment from the next will be like.

Anyway, Andrew spent the day with Nana. I took him to the van first this morning and he had a difficult time carrying all of his securities with him.

 He was happy when he made it to the van with them!
 Trenton brought his animals along for the ride too! After a bad night of sleep, he took a nice little nap on the way to STL.
 While we were at the doctor, he loved her stethoscope.
 He even practiced listening to Mommy's heart.
 After our appointment with Dr. Twyman, Trenton had to get blood drawn for Dr. Paruthi. That was a nightmare. We had to wait 25 minutes and that was terrible. Trenton was very hyper. Needless to say he was all over the place and I was left to chase him. Plus, I had this woman who was trying to speak to me all about how her 13 year daughter is in the phase of not wanting to go anywhere with her. She goes on and on  how awful that is. She continues to tell me about her 7 year old daughter who talks too much and gets in trouble for that at school. She said she can't take anything else. She literally said, "What else can go wrong with my life."
WOW! I did my best and bit my tongue and ignored her. What I really wanted to do was say..."Both of your children could have autism.Autism is not just talking like everyone seems to think. Its way more than that. Instead its like this...you are a prisoner in your own home, you fight daily battles, you get kicked at, hit at, screamed at, and if you aren't right there when they poop  you will be wiping it off of your walls, doors, and carpets because both kids LOVE to smear their poop, you never sleep, you spend all day at therapy, you go to countless doctor appointments trying to help your children, you never get one minute of peace and quiet, you will end up getting anxiety yourself and have hospital stays due to panic attacks, and do I really need to go on?  And by the way lady...be grateful your children are healthy and can talk. There is not one day that does not go by that I don't wish I had a little girl to help take care of my boys one day. So please, appreciate your life. It could be worse....just like mine could be worse."
But...I didn't say that. I bit my tongue, smiled, grabbed Trenton's hand and hid in the restroom for a while!
After, Trenton's name was finally called, he got his blood drawn which is always a sight for sore eyes. He cries for a very long time after. He would not use his arm for three hours afterward. He rode home like this....
He held his arm out looking at his "owee". Then, tonight before bed, he looked at his "owee" and had a meltdown until he cried himself to sleep. If I only knew what he was thinking? My guess is that he noticed his arm was starting to bruise from his "owee" and he had flashbacks from earlier today. It breaks my heart!

Wednesday, September 24, 2014

Hotel & Pictures!

It is usually an interesting experience every Monday night staying in a hotel with the boys. To much surprise, it is Andrew that has the more difficult time. We have been rather lucky that Trenton has handled the hotel stay fairly well. We have a certain routine when I pick them up from Harsha. We follow that routine til the next morning when they go to Harsha and Trenton does fairly well. Andrew usually brings a new problem each Monday night. This past Monday night, I am surprised that he didn't get us kicked out of the hotel.....I am just waiting for the time that we do get a call from the front desk asking what in the world is going on in our room.
Lately, Andrew can not control his anger when he gets angry. He has formed a bad habit of letting out blood curdling screams. When Andrew does this, you can see the adrenaline and pure anger in his whole body. Before you can do anything, he takes both hands and attacks Trenton.....which is not a good thing....Trenton then retaliates or he goes into complete meltdown and it's a long time before anyone stops screaming and crying.
With that said, Andrew screamed and screamed the majority of Monday evening. Between that and Trenton running around the room letting everything out of his system , we were nothing but quiet. Therefore, I am just waiting for the day with a knock on the door......

When Andrew finally quit screaming and settled down, he looked cute in his hotel bed.

Silly boys making hats out of deflated balls at Harsha.


We had OT and ST today. I want to share what Andrew did in OT today.
The top line is hand over hand with his therapist, Jodi. The bottom line, which I got wet, was mostly done with a verbal cue. GOOD JOB ANDREW!!!
 This is his beautiful artwork. He practiced cutting and tearing properly. I thought this page was cute....Andrew clued all of his pieces on top of each other. This is very typical of Andrew....if he isn't lining up...he is putting everything on top of each other.
James 1:2-4
My brethren, count it all joy when ye fall into divers temptations; 3 Knowing this, that the trying of your faith worketh patience. 4 But let patience have her perfect work, that ye may be perfect and entire, wanting nothing .

Monday, September 22, 2014

Judgment

I get asked a lot about what is the hardest part of raising two children on the spectrum. I am not sure that there is one thing that is harder than another to be truthful.  Each and every component of autism is exhausting. Autism literally takes every ounce of energy and sucks it out of you. Yet, you still have to keep on going and going like the energizer bunny to keep up with your child. Therefore, there is not just one thing that is harder than another with autism. Nonetheless, if I could pick one thing that I wish parents of children with autism did not have to deal with, it would be judgment.

I came across this article today..
Another cause of emotional distress for parents is the judgment issued by others on their child, and on them as parents [3].  The lack of definitive, visible signs of autism causes outsiders to view autistic children as “normal”.  Thus when an outsider sees an autistic child throwing a tantrum in public they pass judgment on the child.  Since children are usually a reflection of the parents, this causes stress for the parents because they are being judged as possibly “bad” parents for not controlling their child or allowing them to throw tantrums in public [3]. The judgment of the parents’ job by others causes stress because not only can the parents not control how their child reacts, they also realize that their child cannot really control many of his or her own actions.”
 
The key thing in that short paragraph is the highlighted sentences....lack of visible signs. As I have said numerous times on this blog, people have to "see" the disability. Children with autism have a wheelchair too just like people who have to sit in a wheelchair. Trenton and Andrew have wheelchairs on their brain. One can not see their wheelchair so it is so easy to be passed off as something as simple as bad parenting.
As many of you know, I started blogging a long time ago on my first blog. I was not going to let people judge me. I was Trenton's advocate a long time before we got the official stamp of autism. Many people in this world lack being educated on autism and by gosh I am here to educate you! I refuse to let my family be judged and I refuse to let my boys be judged by others for their lack there of.
 
The one thing I knew that I always wanted to be in life was a mother. I looked forward to that day and I could taste it long before it happened. With that said, I refuse to have my one chance in life as a mother be judged by others because of their lack of knowledge. The unfortunate thing is that I have came across many people who have not the slightest clue what autism is really all about. I often get told that people think individuals with autism just don't talk. That is completely wrong. There is a large percentage that  do talk and communication is only one small area out of 12 that children with autism battle.  With that said, I will continue to blog and advocate for my boys and their hidden disability till the day I die. That is part of the reason I like blogging much better than Facebook. On my blog I explain and tell the story behind the pictures as well as educating.  Some pictures speak a thousand words and some pictures you don't know the real story until you hear it.


Here are some pictures of the boys from Harsha today! They look so happy in their pictures! They love Harsha  and all of their therapies at home! I can't express how much therapy has helped Trenton and Andrew over the years.
 In these pictures I see happy boys getting the help they need. I just love the way Trenton and Andrew looked and smiled for these pictures today!

Trenton and Lindsay
 Trenton and Natalie

 Andrew and Lindsay
 

Trenton and his coach, Missy, singing and dancing to "If you are happy and you know it" on Friday last week.
 

Sunday, September 21, 2014

Great Sunday!!

After a really bad night of sleeping ( and Trenton had done great for 5 nights before) we had a really good Sunday!!!

Andrew spent the night with Nana and Pop which is why he was missing in my picture with Trenton before church.
 I thought the picture turned out fantastic!!! Trenton was looking and smiling!













 The boys and Nana before church.
 


On our way to church, Trenton fell asleep which did not surprise me after our bad night.
Trenton did great in church today. I was very proud of him. It was the best behavior that he has had during church in a long time. Therefore, we decided to go to the pumpkin patch this afternoon. It is always better when there are three adults to do anything in public. If we make an appearance in public it has to be short, sweet, and to the point!
 Nana and Pop went with us. It takes two adults for Trenton and one for Andrew. We survived and had a good time! I wish I could have "relaxed" more but you have to always be on high alert with Trenton. Yes, I had to chase him several times but he did hold my hand for a short time. Thankfully, when we arrived no one was in the mazes. We had it to ourselves...and that helped A LOT!!

 Trenton loved the ostrich.

We walked thru the corn maze!
 The boys and their Nana!





 And we bought a few pumpkins!

Saturday, September 20, 2014

Great Saturday!


The boys had a great time this morning riding a horse! Of course our experience was much different than the norm. An autism experience goes like this.....
Mommy takes Andrew to the horse while Daddy and Trenton sit in van.
 Andrew enjoys the horse.
 I take Andrew to Daddy and Mommy grabs Trenton from van.
I walk Trenton to the horses and use everything I have to distract him from all the extra stimuli that was around.
Trenton rides the horse (thank goodness there was no line or we would not have been able to do it). Mommy takes Trenton to the van and we leave immediately.

I would have rather walked up to the horses and enjoyed it as a family but Trenton is unable to "wait" and would have been distracted by everything else going on.





When Trenton got on the horse he tried to say, "Yee Haw". It was so cute!! SO CUTE!! Good Job Trenton!!



Later that morning Grandma and Grandpa came by for a short visit!


Friday, September 19, 2014

Dear Autism

Dear Autism

As you know, raising children with autism is extremely challenging. It simply can not be put into words what it is really like. I couldn't help but notice the beautiful drive today on my way to Harsha. It was beautiful! It was one of those drives that I just wanted to burst out singing...."It's a Great Day To Be Alive" by Travis Tritt. What else could I ask for....a beautiful morning....my health is better.....Trenton was smiling in the backseat....life was great! I was driving down the road and singing the song in my head with a little shoulder dance to add. Then just like the blink of an eye, Trenton was upset. Very upset!! He was crying, kicking, screaming, and swinging his arms. He started waving his hand at me. When he waves I know something is wrong. He wanted to tell me something and couldn't get the words out. Oh how I just out right despise you Autism. We were doing great and you ruined our moment so quickly. It is not easy trying to managing an autistic meltdown that is happening in a car seat while driving 70 mph next to semi truck after semi truck. However, I did my best to figure out what was making him crawl out of his skin. Guess what it was?????? A little tiny piece of a nail was hanging off of his nail bed. I mean this was the tiniest piece of nail. It wasn't a hangnail just a small piece that was lifted off the nail. Oh man was it driving him nuts!

I can't simply say, "Trenton, Mommy will get it when we stop." Oh no....he can't understand that and due to his disability he can't wait. This is just one of those small incidences that would not have drove a neurotypical child to the extreme like it did Trenton. Seriously Autism what else??? How dare you make my child's like so difficult. While we are talking about nails....have I reminded you lately how difficult it is to trim his nails? Ha...he won't. Its worse than the Battle of Brushing Teeth. Its far worse. When I start walking to him with a pair of nail clippers the fear takes over. His outstanding strength takes over and there is nothing for Mommy to do other than lay on top of him. However, if I get it just right I can trim the nails while he is asleep. I know when he is in a good sleep and when he isn't. Mommy always knows. I just have to judge.

I simply just wanted to remind you Autism of two small things that should be so simple but aren't for us. Trenton can't handle looking at a small piece of nail coming off his nail bed and he can't handle getting his nails trimmed. Its just not the big things that you take away and make so very difficult...its the small things too.

However, we are standing strong against you. We will conquer you...you just wait! As I have said before...you don't know who you are messing with!

Sincerely,
A Warrior Mom

Book Signing

BARB TACKITT BOOK SIGNING AT LIBRARY
(09/19/14)rp
The Flora Public Library has announced that Barb Tackitt will be at the Flora Public Library tomorrow afternoon, from 2:00-4:00pm for a book signing of her new book, “Movin’ On.”  The book was beautifully illustrated by local artist Denise Plumlee-Tadlock.  Copies of the hardback book, which was published by Mascot Books, will be available for $15.00 each.
“Movin’ On” is a collection of stories that illustrate the idea that the most important things in life are not what we teach, but what we learn. Working nearly three decades as a traveling, country nurse, Barb encountered more than a few surprises along the way. The book is about her 30-year journey at the health department and it showcases 32 unique patient experiences.  Each story is an account of a true event that changed her life and helped shape who she is as a wife, mother, and person. Some are funny, some are poignant, but all are entertaining and enlightening.   
Proceeds from the book are going to help Barb’s niece, Angie Tackitt Conrad, and her two sons who both have autism.  
Anyone that misses the book signing may purchase “Movin’ On” from Mascot Books at www.mascotbooks.com.
For more information, call the library at (618) 662-6553 or visit the website at www.florapubliclibrary.org.

news picture 2

Thursday, September 18, 2014

Yellow-Blue-Purple-Red

Trenton has been fixated on colors lately. He has enjoyed watching The Wiggles the past two weeks and I think that is why he likes colors. The Wiggles dress in yellow, purple, blue, and red. Trenton likes to take turns wearing the four colors. He wants me to put him in a yellow shirt and he will walk around with that on for a few minutes. Next, he wants a red shirt and so forth. It is rather cute to watch. However, its rather sad and depressing what he also does. If he sees a red toy then he has to make sure he puts a blue, purple, and yellow item with the red toy. For instance, the other day he had an item that was blue, purple, and red. The only color that was missing was yellow. He could not find a yellow item. Therefore, he said, "yellow egg." I knew instantly he wanted me to make a scrambled egg. Therefore, I made a scrambled egg, put it on a plate, and he was happy. He placed his yellow egg next to his blue toy, purple toy, and red toy....He is one smart boy!!

You can see in the below picture that Trenton has containers that are yellow, blue, red, and green. The only color missing was purple. What did Trenton do? He took the lid off of his purple play doh and carried a purple lid with the containers so the four colors plus green were together. These were his objects of the day.
If you look at Andrew you see that he is carrying his objects of the week...Larry Boy and Larry Boy's car from Veggie Tales. My boys like to take objects with them. It is their securities and it helps them transition and feel comfortable in this world.

Amen to this!!!

same with being a teacher of severely autistic students!

Tuesday, September 16, 2014

Harsha!

We had a fantastic two days in Terre Haute! The boys had great days and worked hard all day long. I can't speak highly enough of every staff member at Harsha. I highly recommend it folks!!


Here is Andrew with two of his coaches.

 Here is Trenton enjoying some time in the swing with one of his coaches.

The highlight of my trip the past two days was talking to another mother. The first time I saw this mom she was dropping off her son at Harsha. Her son is a teenager and is very low functioning. The first morning that I saw them, I got in my van and cried. I cried for this mother and her son because I knew that pain. I cried for Trenton and myself. I cried wondering if that was my future with Trenton.
I have since seen this mother weekly. Thankfully, we had the opportunity to talk today and it was amazing! It is always nice to talk to someone who walks in your shoes and UNDERSTANDS!

We are so blessed with all the wonderful therapist Trenton and Andrew have had over the past two years, all of our new coaches at Harsha, teachers, aides, parents, and families that we have met since we have been on this journey. God is good!! He led us to the right people who can help us!

Psalm 34:8
O taste and see that the LORD is good: blessed is the man that trusteth in him

Monday, September 15, 2014

Wild Behavior

We had an overnight guest on Saturday night. Chloe, my parents dog, stayed the night with us. Chloe saw things that she had never seen before nor even thought was possible. If dogs could talk she would tell you how exceptional and different the Conrad household is. For instance, Trenton went to bed at eight o'clock that night. I was elated that I actually had time to take a shower, check my email, and start picking up the house before ten or eleven o'clock at night. It felt so good to do those tasks and crawl in bed at a decent time and then BAM! Trenton is up....and the rest is down hill.....

Trenton is wild......WILD...UNCONTROLLABLE from ten thirty to almost 4 in the morning. Andrew wakes up crying at 11. I have both boys awake in the night at the same time  for two and a half hours. At one point I looked at the clock and it was midnight and I was just fighting back tears. FIGHTING BACK TEARS!!! Trenton's sleep overall is vile lately. His behavior is declining and keeps getting worse. I was beyond stressed and sleep deprived and both boys are non-stop moving. Have you ever seen a class of Kindergarten children who are all excited? Well if you haven't...the noise level is unbearable....a class full of children playing with excitement can be very loud. My two boys were making enough noise for twenty Kindergarten children. Nothing I could do was calming to them or making them stop.
Andrew fell asleep around 2:30, Trenton at 3:50, and Mommy at 3:51.

Chloe was a good girl through it all. I am sure if you asked her if she would want to stay the night again, she would say NO.


Trenton has made such huge gains lately with the ability to say, "I want_______". However, his behavior is declining. Autism is like this....you take two steps forward but those steps forward are always associated with ten steps back.

When I say I can't take my eyes off of him that is NOT an exaggeration. I don't have to explain again how wild he can be and what he does when he is wild. I just spoke about that a few posts ago. However, on Sunday he was doing all of those wild behaviors and more. What I am trying to say is this.....Trenton wants eggs. I make him scrambled eggs and try to get him to sit in his chair. He doesn't want in his chair. I place his plate of eggs on the table. I make Trenton sit down. I hear Andrew crying so I go and check on him. I help Andrew who was in his bedroom. I walk back out in my kitchen and living room area to find Trenton jumping on my couch smearing scrambled eggs all over his face and body.  I HAVE SCRAMBLED EGGS EVERYWHERE!! I get Trenton off the couch and start picking up the mess. Trenton runs into the kitchen and starts climbing up the fridge. I run in the kitchen and get him out of the fridge. He knocks cereal boxes off the top of the fridge. I pick up the cereal boxes. I walk back in the living room to find that he grabbed one box and dumped its contents all over my carpet. I start cleaning up the cereal mess while Trenton is grabbing hand fulls of cereal and throwing down my vents.  Now I have eggs and cereal all over my living room and down my vents. While I am trying to clean up the mess I hear the water running in the kitchen. I run in the kitchen to find Trenton standing in my kitchen sink with the water running. I get him down. He runs into the bathroom and does the same thing. All the while I have not even had time to see what Andrew is up to. Want to know what he was doing???? He had taken off his pants and clothes and pooped all over my carpet. Andrew was having a day yesterday where he did not want clothes on. When he has these days I have to fight him all day long....I mean ALL DAY LONG!  NEVER A DULL MOMENT OR JUST A SECOND TO CATCH MY BREATH!

That was just a very short ten minute period of what my whole Sunday was like. If you think that ten minutes sounds exhausting  and crazy...well...I should tell you about my whole day. It would send most people running in their tracks and never looking back.
It's been awhile since I have had to leave church early and yesterday was one of those days. Trenton was not manageable in church even.

 If you can picture everything in your house destroyed with food, toys, broken toys, clothes thrown all over house from dressers and closets, shoes thrown everywhere, etc...then that is my house. I am not sure why we even have toys for Trenton.  He does not play with them. Instead,  what is fun to him is simply making messes and stringing everything everywhere.

Here he is in the middle of his cereal mess. One of these days I will get the courage to take pictures of the destruction that two boys with autism can do to a house. As of right now, I am too embarrassed to take those photos and share.


Andrew fell asleep during one of his 4 wheeler rides this weekend with Pops. So precious!




Andrew loved riding in the very back of the van on the way to church on Sunday. He was singing, "Jesus Loves Me" with Pops.