Making progress!

We've been working with Jayen on his basketball skills and trying to teach him defense and how to protect the ball so the other team doesn't steal it from him. We've been going to the basketball courts on base and playing two on two as well as attending family time at the gym. (Which is an amazing sacrifice because that place is a sweat box of stink.) But I think it is all paying off. There are glimmers of hope when we watch him play now. He may be trying to steal the ball from his own teammate, but he was trying to steal the ball!!!!!

No matter how well he does, he smiles the entire time. He feels like part of the team. He's included and feels no different than his peers. That is what is most important to me!

We were handed his team and individual pictures today and I just can't get over how cute these turned out. What a little stud!

WrightsLaw Conference

This momma has had to be an advocate since day one when the doctors didn't even believe Jayen was having seizures. So it was time I learned a little more about his rights and my responsibilities. So thankful for AZANOW for giving me the opportunity to attend a Wrightslaw conference with Pete Wright, the special education law guru! The conference had some amazing information that I know I will use on a regular basis. They even sent us home with three of Mr. Wright's books. Now I have some reading to do. Anything to help me be the best advocate I could be and get my son everything he needs.

      

Joey Travolta Phoenix Suns

On January 31, 2017 I was contacted by a friend asking if I liked publicity. I knew this was a loaded question, because she had already put me on live television and I couldn't imagine what was next. But it was far beyond my wildest dreams. Karrie, my friend and founder of Arizona Autism Network of the West Valley, was contacted by Rachel Travolta. Rachel is the daughter of Joey Travolta and niece of John Travolta. Rachel was "looking to speak with someone about a local story about athletes with autism for a project we are doing with the Phoenix Suns. I'm contacting you to see if anyone in your network would be a good fit. Inclusion Films, a film workshop for folks with developmental disabilities, has been working with NBA teams to feature local stories about folks with special needs that are shown in game."
Rachel's father, Joey Travolta, is a special education teacher. He started inclusion films to help individuals with developmental disabilities learn critical job skills. As she mentioned, they were looking for someone to do a short story on for the Phoenix Suns autism night. Kerrie responded that she has "thee PERFECT kid for your story."

"His name is Jayen Hochstein. Jayen is 7 years old, has both autism and epilepsy and is non-verbal. His father is in the US Air Force and his amazing mom is on my AZANOW Board. Jayen LOVES basketball. He has been playing in an adaptive league with the City of Surprise for the last 2 years, but just last month, his mom took a chance and signed him up for a regular league. Jayen is doing awesome in his new league and new team. His teammates and coach have all welcomed him with open arms and he is having the time of his life. I think this young man would be perfect for what you are looking for. Jayen has also had multiple brain surgeries and is delayed in many areas, but he has made so much progress in so many ways. He is an inspiration to me, to my son (who also has autism) and many others every single day."

I was blown away by her words! Thank you Kerrie for suggesting Jayen and presenting him with this amazing opportunity.
That night I responded to Rachel's email and said we would be interested. The next morning she called and asked if I would share a little bit about him. I didn't know where to start! How do you talk about the whirlwind that has been the last 7 years of our life? I mentioned that he has epilepsy and was recently diagnosed with autism. (I knew her cousin, John Travolta's son, had autism but I didn't realize he died of a seizure.) I gave the brief story of how recently we knew Jayen wanted a little more than what Buddy Sports could offer and we were debating about putting him on one of the regular youth teams. How we took a huge leap of faith and put him on a team with neurotypical peers. We talked about how he screams when he hears our neighbor outside playing basketball and begs to go play with this adult man whom he feels equal with. I had so much I wanted to tell but couldn't get it all out and didn't want to waste all of  her time. She was very interested and wanted to share his story with her dad. I was so grateful for the opportunity just to talk with her and learn more about Inclusion Films. If they actually picked Jayen it would have been the cherry on the top.
The very next day, I received another email from Rachel asking if I had a video of Jayen playing basetball. My response, "That's a silly question. Of course I do!" with a youtube link to a couple videos.
A few more emails went back and forth for the next couple days. I sent some more pictures of Jayen playing basketball. I completely forgot about our times in the hospital and all we could get Jayen to do was play basketball from his hospital bed. I had never really stopped to think about how much he really does love basketball, but man do I see it now! I don't know that there were many times he hasn't had a basketball in his hands. There were even pictures of Jayen on our back deck in Nebraska with at least 6 inches of snow covering everything and he was still out there shooting hoops.
Last night, I received an email from Rachel asking me to call her when I got a chance. They had met with the Phoenix Suns and loved Jayen's story. They want to come film his last City of Surprise basketball game, interview both Matt and myself, as well as his coach. They would also like to invite Jayen to be the ball boy for the Phoenix Suns vs Boston Celtics game on March 5th. They would be there to film these events then it would all be played on their autism night game in April.
I couldn't stop smiling. I tried to hold my excitement and not sound like a giddy school girl, but this was so cool. So crazy. So surreal. I hope and pray Jayen will enjoy this. I hope the excitement isn't overwhelming for him. I pray that this is as magical as I feel this could be for him!

So if anyone wants to join us on March 5th for the Phoenix Suns vs. Boston Celtics, we think you might recognize the cutest ball boy you have ever seen!

Green means more sleep!

We have been at our wits end trying to figure out how to get some sleep. I feel like I have a newborn again. Jayen has never been a great sleeper, but things have really gotten out of hand lately. He's been waking consistently throughout the night then around 5 AM thinks it is time to wake EVERYONE. Matt has been working swing shift so he hasn't been getting home until midnight or later. I have been attempting to stay up and wait for him since it is the only alone time we seem to get. Well, needless to say, I don't manage to stay awake many nights as I am still exhausted from not getting any sleep the night before.
I had been doing a little research, while prying my eyes open, and came across some different night lights that have special stay in bed techniques. I posted on facebook asking other friends if they used any of them and for advice. My friend Meghan said she saw this one on clearance at Target. Who could resist trying it when it is 50% off?
We brought it home, set it up, and started training. That night I practiced with Jayen over and over and over and over and over and over! This had to work! I needed this to work! When the outer light turns green it is ok to get out of bed. I would stand by the clock and periodically turn it to green and watch him jump out of bed. After a couple attempts I felt he understood the concept! Everyone pray this works. We need some sleep in this house!

UPDATE 2/11/17: I am happy to announce that this thing is starting to work. There are still some mornings that I see the 5 o'clock hour but I can remind him that his clock is not green yet and he needs to go back to bed. The stomp of his feet on the way back to his room wake nearly everyone in the house, but he goes back and waits until the very second the light turns green then screams "een" so everyone knows it is time to wake!