Lunch Disaster

We started ABA therapy a couple weeks ago. After waiting over a year to get these services again, I was overjoyed to start. I've really been struggling trying to step back and stay out of the way so Jayen can build rapport with the new tutors and understand that he has to listen and do what is asked of him. Today was one of the most difficult days I think both Jayen and I have had. Lunch time didn't go so well the last time this therapist was here either. I really wanted to make sure they all understood his feeding issues and aversions. I guess I did not stress them enough. This feeding session had been going on for nearly 30-45 minutes before I even started recording the session. The tutor told Jayen he couldn't have mom, even though he was screaming for me, until he took a bite. After refusing again, he changed to not having mom until his food was all gone, then once again changed it to not having mom until his session was over at 2:30. In the meantime I was sitting on the other side of our counter crying and holding myself back. I wanted Jayen to understand that the tutor was in charge, but I was so disappointed in how the tutor was handling the situation.
I keep thinking about how he was imprisoned to the chair. He was forced to stay there against his will. I know I mentioned over and over again about his feeding issues and that he needed to be watched so he doesn't choke. There was no watching him. There was no way for him to know if Jayen was choking. He didn't care. I'm so upset that he took the food away from him but continued to shout at him to finish his food. I'm livid that he decided to take off my son's clothing without consulting me first. I'm beyond upset that this has to be his memory. The next time we try to eat he is going to be upset before we even start. The relationship between Jayen and his tutor is now non-existent and can't be repaired.
I have sent this video on to the tutor's boss and am waiting for her response.
After replaying this video and the moment in my head over and over again I am so disappointed I didn't stop this much sooner. I originally took the video to show to the BCBA to help us all figure out a better way to handle this. I just can't believe I let this happen. I will not be allowing this to happen again. I'm so sorry Jayen. I'm so sorry for sitting back in silence while you were screaming for me. I'm so sorry I allowed this to happen while I watched. I promise to step in immediately when I know that this shouldn't be happening.

Urology

I've kind of always said Jayen has had a problem with his boy parts. Every time he pees it comes out sideways. I tried to just chalk this up to the fact that he is a boy, but this was beyond an aim issues. I finally mentioned this to his pediatrician a month ago and he recommended we see a urologist. Today we finally had our appointment and met with the doctor. I was a little worried about how I was going to explain this appointment to Jayen (and Brilyn too since she had to come with me). I've told the kids since they were old enough to understand that NO ONE is supposed to touch their privates except mom or dad. Now I was taking him to a doctor that had to pull down his pants and look extensively at his privates. He wasn't so sure of this. He was very hesitant to let me pull his pants down. He didn't scream but told me no a couple of times. The doctor looked and noticed that Jayen has a very small opening causing him to spray all over and not completely empty his bladder. This is why he struggles to pee, why the pee goes everywhere and more than likely why he pees so much a night causing bedwetting issues. The doctor recommended an outpatient surgery called a meatoplasty. Jayen will go into the surgery center on April 12th to enlarge the opening of his penis and hopefully relieve some of his symptoms.
I feel like if there is something that can go wrong, it will go wrong with this child. What a crazy world we are part of with Jayen in our lives but I wouldn't trade him for the world!

6 year anniversary

6 years ago our lives changed and they haven't stopped spinning backwards since. 6 years ago Matt was gone for training to become an FTD instructor and I was home with our 2 year old and our newest little one. Jayen was 4 months old at the time. I had put Dalan down for a nap, fed Jayen and was attempting to take a nap myself. Shortly after falling asleep Jayen's arm started twitching and hitting me. Immediately I knew something was wrong. I tried talking myself in and out of going to the hospital so many times. I'm so thankful Michelle Joslin answered her phone that day. I think it was a Monday and she usually had Mondays off. She was so gracious and came over right away. I left Dalan and Michelle at the house to play and I took Jayen to the hospital. While at the hospital it happened two more times. The emergency room doctor decided to put him on phenobarbital and refer him to the neurology department. We were there for a few days so the doctors could watch him. We were finally released with a bunch of new appointments to see the neurologist. Thankfully daddy was able to come home and be with us.
In the last 6 years we have had so many more medications added and taken away from Jayen's daily regime. He's also had a diagnosis of Infantile Spasms, epilepsy, FoxG1, ADHD, and Autism. More therapy sessions than days he's been alive; including OT, PT, Speech, Feeding, ABA, and Habilitation.
No matter where we go or what life throws at us, we will make the best of it and help Jayen become the best he can be!

Cal Ripken then Mayberry's

The city of Surprise holds a Cal Ripken event for all the baseball players. Both Jayen and Dalan's baseball teams were invited to the game and on the field. We were excited to be able to go to a Royals game and cheer on our favorite team. Being on the field was a great experience too. Once the game started and we were back in our seats, we were so excited to see Alex Gordon in the outfield. We kept yelling "Go Huskers!" After a couple times he looked at us and gave us a thumbs up. It was a long, hot day in the sun but worth every second.

After the Royals baseball game and Jayen's buddy baseball, we cooled off with some drinks and games at the neighbors house. I bought cookies and frosting for the kids to decorate. Jayen was slightly interested in it. He pulled up a chair and sat at the table with the rest of the kids. After two cookies and more than a pound of frosting the game pie face was brought out. Jayen stayed at the table and was watching as it was being put together. The spinner was spun and the first face was put in the hole but as soon as it went off Jayen started screaming. He ran out the door and couldn't handle it. It took at least another 20 minutes to get him to come back. I sat with him on the couch and held him tight each time it went off. After getting more comfortable just watching, I brought him closer to the table to sit on my lap. He was still having a really hard time with it. Matt decided to play and let Jayen wipe it off of his face. We even put some on his finger and let him lick it off. He wanted nothing to do with the game but really liked the whipped cream. I am glad we got this opportunity. I was really thinking about getting the game for our house. I know to wait a little longer now!

Last day of Spring Break and decided to give back!

We stopped by the local fire-station to drop off cupcakes and they gave us a tour. What an amazing facility. I think my dad would be jealous! I haven't needed them yet, but I know someday we will. It was so good talking to them and being prepared for the inevitable.

St. Patty's

The leprechaun found his way to our house again! Gold coins were hidden all over the house and the food turned green. Jayen was even excited to turn his hair green! After green eggs and ham for breakfast we headed on base to prank Matt since he wasn't home to enjoy the festivities. We bought green crepe paper and were putting it around daddy's truck when the horn started honking. I knew we had been had. The horn was not the alarm but the locking and unlocking. We were caught. So Matt started taking it off his truck and putting it on my vehicle. We realized we were fighting the same battle and instead put it on his boss' vehicle. 

When his boss found out who did it he put the paper through the shredder, added a little more, then dumped it all over the floor in Matt's office. I think our pranking turned out just fine!

While at therapy I found out I won two tickets to the hockey game tonight. The tickets included parking and the BMW lounge. At first I thought I would send Matt and one of the kids, but then I found out the lounge included free food and drinks. We scrambled to find a sitter. In the nick of time we were out the door and enjoying our green beers. I honestly can't remember the last time I went out for St. Patrick's day. 

Sorry kids, we can eat the corned beef and cabbage tomorrow night! Have fun with the sitter!

Texas rangers clinic

About a month ago I received an email from one of the staff with the city of Surprise informing me of a baseball clinic put on by the Texas Rangers; their spring training is held here at the Surprise stadium. I wasn't sure if this would be too advanced for Jayen but thought he would enjoy it anyway. I was able to RSVP before all the spots filled up. They were limited to 45 kids. Today when we showed up for the event I was blown away! There were players and coaches outside welcoming everyone into Dream Catcher Park (this is where we play buddy ball), on the fence behind home plate was a jersey stitched with each of the kids' names, colored wrist bands were given to indicate what group the kids belong to, and stations were set up with baseball skills but based on ability of the group that was at the station. This truly was a magical experience. We can't thank the recreation department, the Texas Rangers and all the volunteers who made this such an amazing experience. 

Let Spring Break Begin!

Bonnie sent me a text today letting me know they were thinking about going to the roller skating rink later in the evening and wanted to know if we could join them. I was a little excited and thought the kids would be too. Dalan begged over and over to go skating at the rink by our old house but didn't get to go before we moved. So I was a little disappointed when he got his skates off and was immediately ready to take them back off. Mr. Confidence was out of his element and didn't like it. He really struggled staying upright. Brilyn loved her skates she got for Christmas from Tom and Tanya and used them to follow Chloe around everywhere. We quickly realized she and Jayen needed a little extra help and we rented the walker to help out. Once she got this she was unstoppable. Jayen had a little harder time. I don't think the skating part bothered him near as much as the flashing lights and extremely loud music. When I took him out on the skate floor he was doing ok until we got close to the speaker. He immediately started screaming and couldn't handle himself. It was like trying to put a cat in a bathtub. He was crawling all over me trying to get away from it. I felt so bad for him! He eventually found token games and convinced Kurt to share his coin stash with him. What a great night. Thanks again for the invite! We had a blast. 

NOOOOOOO!

I don't want her to go. So much has happened this week and I just don't want to give her back. I think I need to convince her to move here!

Sunday Funday

After church, Sunday school, lunch, and naps we were excited to try something new. The rain was trying to keep us away but we weren't letting it stop us! A few dirt road and we found our way to an orchard to pick some citrus. I've been wanting to do this for a while but decided to wait until Allissa came so we could all do it together. I didn't realize there were this many different kinds of oranges. 

We left with more oranges than we know what to do with for around $10. But the time together was worth so much more!