Friday, July 3, 2015

Terre Haute Walk Now For Autism Speaks

Three months till the Terre Haute Walk Now for Autism Speaks!!!
If you would like to join our team or donate to Autism Speaks in support of the boys, you can do so in the link below.

http://www.walknowforautismspeaks.org/faf/search/searchTeamPart.asp?ievent=1139477&lis=1&kntae1139477=9C6ECADBCB4C4AA6838A1AEE52997D0C&team=6376003

I am having a great time being the Walk Chair for this years walk. I just LOVE advocating and raising awareness of autism!

Thursday, July 2, 2015

Harsha Pictures

Here are a few picture from Harsha this week. Trenton has spelled many words this week!









 Andrew showing his coach his Hulk muscles!

I love this picture from last week! He sure loves his ketchup!

We are watching and observing Trenton very close at home and at Harsha. His aggressive behavior just keeps on getting worse and worse. I have a feeling we might have a medicine change next week!


We are spelling lots at home too..

Wednesday, July 1, 2015

Fun Times with Andrew

After our dreadful morning that would have left most people shaking in their legs, Andrew and I had a good day. We made the most of it and enjoyed being "normal" for a few hours.

Story time at the library was a blast! As always, Andrew didn't pay attention to anything but its good to get him around other neurotypical kids.

The kids got to play with a parachute today! Andrew loved it!


I had to take a picture of his name tag. The teacher always has them put a sticker on their name at the end of class and Andrew always puts his sticker right on his name.  I guess when the teacher says, "Put your sticker on your name." he takes it literally.


He did good in his swim lessons today. His ADD is starting to show big time during his swim lessons. His coach is fantastic with him. He is very patient with Andrew and does everything that he can to get him to focus on what he is saying.
Today after Andrew and his coach got out of the water, Andrew looked at his coach and said, "Let's pray." Jesse looked at him and said, "ok".
Andrew folded his hands and said, "Dear Heavenly Father. Thank you for swimming. Amen"
Last week his coach said a prayer to him so today Andrew said the prayer. As we were leaving, Andrew said, " I like Jesse. He prays like me."

 Our new adventure today was taking a very short train ride in Deming Park! While we were on the train Andrew said, "It's like Percy, Mommy." Then he pointed to the conductor and said, "He is like Sir Topham Hatt."
If you watch Thomas and Friends who would understand what Andrew said:)

As always, I loved partaking in what Terre Haute has to offer with Andrew! I love Wednesday and Fridays when we can be somewhat "normal"

Just another battle....

Unless you are a solider preparing for combat, you can't imagine what he/she feels like. Unless you are laying on your death bed dying of a terrible disease, you can't imagine what that feels like. Unless you have been a victim of abuse and torture, you can't imagine what that would feel like, let alone how you would behave and act afterwards. Unless you are an autism parent, you have no idea what it feels like and you have no idea what the parent goes through!!!!

I know how amazing it has felt when individuals have reached out to me and helped me when I needed it. I know what it feels like to hear, "Hey, I am thinking about you and praying for you." Sometimes just a simple gesture can mean so much when you live a life of complete chaos and stress. You do know that it has been said by professionals that autism parents has stress levels comparable to that of soldiers in combat! I don't know if that is true or not because I have never been in combat but I would have to say that I am sure it is fairly close. I will show you a video tonight of why I think that is a comparable statement. I should also say that I don't think every autism parent has that comparable stress. For instance, the boys father has never once dealt with the issues that I have. I am not saying this to run him down, I am just simply stating that he does not partake in the 24/7 care that I do for the boys. He drives a distance and works outside the home.  I know in many households the fathers and mothers work as a team and both take turns with therapy, etc. However, many households are like ours where it is me.

The last two mornings have been HELL and that is putting it politely! Trenton has had OT and ST both mornings before Harsha. With that said, Tuesday and Wednesday mornings Mommy and boys were out the door by 7:30 AM. By 8:30 AM I felt like I had been beat to death by a stick! Both mornings I had a splitting headache by 9:00 AM and I could feel the thuds in my chest from my irregular heart beat....and I have not felt that in a long time!

Both mornings it took me a good 5 minutes to try to control Trenton so I could pick him up and just carry him out to the van after his therapy. He was screaming, jumping up and dropping to the floor, kicking and hitting his therapist and me. He would lay on the ground and roll over and over hitting and kicking.  We all would try to get a hold of him to take him out to my van but he was so strong and forceful, I thought he would break my nose if he kicked or hit it just right.

Finally, after about 5 minutes both mornings, I was able to pick him up and carry him out the clinic. I have no doubt we were the most talked about situation in that clinic all week...if not all year!  If someone didn't know who Trenton Conrad was that worked there before this week, well they know exactly who he is now. I am sure they all will just gringe when it is our morning to come in!

Andrew was really good this morning when me and two other women were trying to control Trenton and get him out of the building. However, on Tuesday morning, our disastrous situation could have even turned deadly. Andrew knew I was tied up with Trenton so he took off running out of the  building and ran straight through a busy parking lot not looking at his surroundings. He was just running! I was yelling ,"Andrew. Stop. There are cars around." Oh no, he didn't stop or pay attention to me. Just another example that it is dangerous for me to care for the boys by myself at times! Oh how we miss living next to Nana. She realized all of this and always helped us!

The video I have posted in this post is an example of what my car rides are like with the boys. Only a mother or father of two boys on the autism spectrum can understand what I go through. This is a short one minute video but our whole 20 minute car ride after therapy was like this. Unfortunately, I am used to our car rides being like this. When we lived in Flora this is what I went through for two hours out of the day taking these boys to therapy. EVERY TIME IT WAS LIKE THIS!!!!!
I had to manage this type of behavior while driving while trying to watch for other traffic while trying to keep my own sanity while trying to keep the boys safe.

 What would you do if you have dealt with this kind of behavior for a few years by yourself on the road all the time? And in the house all the time....And during the wee hours in the morning...and the list goes on and on and on and on.  What would you do?

I know the video is the wrong way but just turn your head a little, it won't hurt you. I am too tired to turn the video around. Plus, I have a nice little spot in the van that I put my phone in to record so I guess my phone videos may start being this way from now on.

As always, I post videos  and blog to educate and raise awareness! If my blog can help just one family, then it is worth it

https://www.youtube.com/watch?v=_aw6FkdAf90

Monday, June 29, 2015

Sunglasses

 The TV was too bright for him so he put on his sunglasses and watched television until he fell asleep.
 This kid cracks me up!!

Mommy Video-2

Ok, so I really liked talking the other night! Last night was atrocious! I didn't think I was going to survive. Trenton had some big problems falling asleep. He was wide awake and wild. I couldn't control him. Andrew was waking up and having problems. I really didn't know if I was going to survive last night. Therefore, I needed to talk this morning!

https://www.youtube.com/watch?v=dguKL-eFRyM

Autism: Where Hope and Courage Springs Eternal

I was excited last week when I was contacted to read a book written by an autism mom and to write a review on it when I am finished.   Below is a guest post written by the author, Pamela Bryson-Weaver.


Autism: Where Hope and Courage Springs Eternal

 

By Pamela Bryson-Weaver

Author of the book Living Autism Day by Day:

Daily Reflections and Strategies to Give You Hope and Courage

 

 Autism! That one word shook my whole world. Not that I am new to being a special needs Mom (my eldest son has Tourette’s) but, quite simply because autism was not yet that “popular” 17 years ago. When Johnny was diagnosed in (2000), my husband and I felt that we were facing a blank wall. I, on the other hand, wallowed in confusion and despondency and, yes, self-pity, too for several weeks. Truth be told, my dreams for my son died on that day and I blamed myself for that.

 Looking back, I had a hard time accepting that John, my sweet little boy whose smile and laughter can light a whole village, is not going to grow up in the same way I see neurotypical boys.  That he will have a hard time pursuing his dreams, that is, if he will even have dreams later on. I was also afraid of him being ostracized in school and be labeled something abhorrent. I dread the thought of him struggling to be accepted in a thriving life where normalcy only meant being neurotypical.
 
Each day back then, I woke up feeling miserable and hopeless. Accepting autism is never easy. I almost reached my breaking point but, I am lucky enough to have the constant love and support of my family. My husband never ceases to remind me that we should be happy, we were BLESSED twice—Tourette’s with Joshua and Autism with John. This is the best thing about having a friend for a life partner. You talk. You argue.  You even yell at each other but always, always ensuring that you both came out as better persons, better parents thereafter.


Another growing fear for me was that of growing old. It felt like a revering kind of fear. The enormity of the demand was staring straight at me and I was caught empty-handed. It was hard to accept that he may need me every waking moment of everyday, that he might never grow up to be  a responsible adult, and what if I died early. It was nerve-wracking! The weight of my fear almost robbed me off my sanity.

One good thing though is that I kept a journal to write down everything that came into mind. My journals eventually became the inspiration for my book, Living Autism Day by Day: Daily Reflections and Strategies to Give You Hope and Courage. My journey of this topsy-turvy world called “autism” is fraught with negativity but my journals helped me cope. It became my outlet for venting out pent-up emotions, and to note down whatever progress we had over the course of his therapies. It became my extension, my shadow in chronicling the events in our lives. 

 My journals are what kept me grounded so I would never lose hope and to always have twice the courage when facing difficulties along the way. It also serves as a simple reminder that amid all the difficulties, there is always another blank page to begin with. Life, with or without autism, should be like that—lived one day at a time. So, that’s what Johnny and I as well as the whole family do. We leaf through each page of our lives with hope and courage, braving whatever autism throws at us. 

 
Pamela Bryson-Weaver is the author of Living Autism Day by Day: Daily Reflections and Strategies to Give You Hope and Courage, a multi-awarded and bestselling book on Amazon. A staunch advocate for autism, she is also the mind behind the powerful website—www.livingautismnow.com—an online portal for parents, caregivers, individuals with ASD, service providers, and experts to interact with each other, to raise awareness, and locate the best possible services for them. Bryson-Weaver is uniquely qualified to speak on Autism as she is the past president of the Autism Society in New Brunswick, and has promoted a resolution on autism that was presented locally, provincially and nationally, and was passed nationally in Canada in 2004. To date, all children diagnosed with Autism Spectrum Disorder in her province receive $20k per year for treatment. Married with 3 children, the main driving force in this advocacy is her youngest son, John, who has autism.




Personal Website: http://livingautismnow.com/