Spio

Today at therapy Jayen got to work with "the PT guru" to try to figure him out. We are really struggling trying to figure out what he is doing when he is walking. We are debating about getting smo's again or using an insert for his shoes. We also tried him wearing a Spio compression suit. Jayen muscles are constantly firing and his receptors are off. We are seeing if the compression helps give his joints the input he is needing.

 One of the things the PT noticed is that Jayen is not using his glutes. She showed me some stretches to do with him to work on strengthening them.

We'll try the Spio again and see if we noticed a difference. I'm willing to try anything!

Mommy's home and she brought NENE with her!

It was such a short trip home. I kept telling Matt he was so lucky that I was bringing Renee with me or I might not have gotten back on the plane. I wanted to stay in Nebraska for so much longer (forever would have been great)! The kids and Matt picked us up from the airport. Jayen was so excited to see, nope no me, the airplanes at the airport.

After dropping our bags off at the house, we quickly headed to the Surprise Recreational Center for the Kansas City Royals! We were so excited to have this little piece of home so close to us. In Nebraska we loved going to watch the Storm Chasers; the minor league team for the Royals. A few of the players we watched in Nebraska were now playing for the majors. Renee and her family are HUGE Royals fans. I was teasing her that she came to watch the Royals and I was the added bonus! When we got to the stadium we tried keeping up with her, but eventually gave up and knew she would find us back. She was getting autographs and making friends with the players.

 

 

Daddy and Jayen found a great spot in the outfield! It was a hot day outside but fun to be doing something we love together and with a great friend. This was an amazing family day!

Mommy's quick trip

Mommy left today to go back to Nebraska. Daddy sent her back with two coolers to bring us some good meat and corn. We'll miss her, but can't wait to get spoiled by dad!

 

 

 

The most amazing friends ever! They surprised me at the airport to say hi before I had to head North to surprise the family. We were only together for a few seconds, but I was blown away that they would do that for me. I miss them so much!

 

I tried taking a selfie with Allissa when I got to their house. It was dark and I couldn't see where I was pointing the camera. I wasn't allowed to take a picture of mom, but her reaction was priceless! I think one of the best surprises of my life! 

Global Epilepsy Awareness Day!

Today is Global Epilepsy Awareness day. We are all wearing our purple for Jayen and our other epilepsy warriors. These two sayings really got to me today.

 

 

Always praying for a cure!

Behavior

I just received an email from the STAR behavior coach that has been working with Jayen and the staff in his classroom all this week. I mentioned that I was excited we started the program, I'm glad he is doing so well on it so far (as reported by her), but was wondering how we could deal with the daily reports of hitting I am getting. Her response once again blew me away!

I am sorry to hear that he is hitting neither para or teacher have told me about him hitting, and I have not seen him hit. I would like to know more about this from the team when I am on campus next. 

I have not been invited to the IEP meeting on April 3rd. Typically I do not attend IEP's however if my schedule allows it I will be there.

What the heck? Is there any communication here? His behavior is why you are here correct? His hitting and aggression towards his peers is why we started this behavior program. How did you not know about his hitting? 

I don't even know where to go with any of this anymore. I have experienced why Arizona is ranked 47 in education. 

Parent teacher conferences

We met with Jayen's teacher tonight for parent teacher conferences. She sure didn't have a lot to tell us, so I took the opportunity to ask questions. I am still trying to deal with everything I learned. I'm so disappointed how his current year is going and how I fear his next year will go. Jayen is not receiving any one on one speech help during the day. The speech teacher is in the classroom, but does no extra support for my nonverbal child. In Nebraska he was working on the Kaufman Apraxia approach and was starting to say certain sounds, vocalizations, word approximations and even some words. If we don't continue to work with him he will regress in these skills and not make any gains. I also asked how she thought next year would look for him. How would he compare to some of the other placements she has seen? She thought he would be in a self contained classroom. Which I made a fuss about at our last IEP meeting that it was written on there that he would be in the general education classroom less than 70% of his day. This is probably what hurt the most. This is the reason I am seriously debating about splitting up our family and moving back to Nebraska. This is how they value special needs children? How is my very social, apathetic, nonverbal child going to learn from his peers if he isn't allowed to be near them?
We have a very big decision to make. Is it more detrimental to break up our family or keep our kids in this educational system?

Where are my freaking Bon Bons?

Today was a very hard day for this mommy. I found my breaking point. I knew having a special needs child would be challenging, but I don't know that anyone could have prepared me for what it is really like. Things with Jayen's school has always been below standard for my expectations but things today seemed to sink to an all time low. First day back from break and I received a text message from Jayen's teacher informing me that she forgot she had a dentist appointment the same day and time she scheduled Jayen's parent teacher conferences. I was a little confused since we scheduled it three weeks ago. After texting back that Matt was scheduling work around this conference she decided to call. I was taken back by all of this. Wasn't this my son's teacher? Isn't she supposed to be teaching my child right now? Who is supervising him? Who is teaching him? I appreciated the heads up but why when the kids were in the classroom?
I was on the phone nonstop with every facet of "help" that Jayen is receiving. I feel sometimes we need a little less "help". After the appointment with Dr. Melmed, I emailed school informing them that we will need to change Jayen's diagnosis for our previously scheduled IEP transition meeting. The school psychologist emailed me back today asking if I had the paperwork they gave me at our last meeting for his OHI diagnosis; the same paperwork I turned in over a month ago, told the teacher was in Jayen's backpack, came home two days in a row still in the backpack, then physically handed to the teacher and asked her to give them to the case manager. Nope I turned those in. She can't find them anywhere and is requiring me to have it filled out again. Sure, let me drag three kids to the base clinic once to drop it off and once to pick it up because you can't communicate or keep track of my paperwork. The psychologist, on her own volition, faxed the paperwork to Dr. Melmed's office. So when I received the call from his office telling me that since we didn't wait for the official paperwork they would have to charge $20 to fill it out, I refused. This was not my mistake and I should not have to pay for it. I will get the paperwork filled out by Dr. Easter again and drag the kids to the base; guess my bon bons will sit at the house and melt waiting for me!
After I spent the entire morning dealing with school, during Jayen's therapy I called the ABA company to see what the hold up was on getting Jayen services. We had a referral, a prescription from the doctor, and prior service so this should not take this long. The representative we had been talking to was out of the office for the week, so we were directed to another. She was willing to look into for us. As she was looking she wasn't sure if we were informed the center they were building close to us had decided to change its deliver model and would no longer be doing in home sessions. WHAT!?!?! For three hours a day, five days a week, you want me to bring Jayen to you. YES, yes, I have nothing else to do or other children to take care of. NO! How is that best for Jayen anyway? You are supposed to be looking at his behaviors in his environment and applying your scientific approach to changing these behaviors. How is trying to recreate those behaviors in an unknown environment with different antecedents and consequences the most appropriate environment for ABA therapy? When my bon bons are gone, I guess I'll start looking into new ABA therapies. The few I've called already have a four month waiting period.
By the time Jayen was done with therapy and we picked Dalan up from school, I was done with the day. I had to send a quick secure message to Dr. Easter informing him about the paperwork, so I asked the kids to go upstairs and go to the bathroom before naps. It took me a matter of minutes to log in, send the message and log out. But in that time Thing One and Thing Two decided that the laundry room looked so much nicer than the bathroom. Jayen crawled on top of the washer, dumped the laundry detergent everywhere, then proceeded to the bleach; his clothes are obviously ruined. When he tried getting down everything was too slippery due to the detergent and he fell leaving an amazing scratch and bruise on his side. I was furious and wasn't sure where to even start with this mess. I didn't know if the bleach was on their skin and burning them, on the carpet, where they had even dumped it. I called Matt in a panic. I just needed him to talk. I just needed someone to make this life go away. I'm not sure what I wanted or needed him to do, but I just couldn't handle anymore of this day. He could hear my desperation through the phone and left work. I just couldn't take anymore of this. I want to leave this place and go HOME! (add stomping foot and uncontrollable sobbing on the floor) Something has to give!

Coyote Fans Now?

When Jayen became a Hope Kid we learned about a volunteer opportunity to help raise funds to support the organization. Matt volunteered himself which means he volunteered me to stay home with the kids. Smart huh? I think I need to start volunteering for more things. A few days before the event, Matt was offered tickets to the game. I was optimistic that I could handle three kids by myself in a crowd of thousands of people while rushing all three to the bathroom, concession stand, and a slue of other places by myself. Yeah ok, I just really needed out of the house and this was my only opportunity. 

We dropped Matt off at the volunteer check in and we headed towards the front. There was miniature hockey available which kept the kids busy for a little while. 

When the kids were done with that, we started walking and exploring what was around. Thankfully we had enough time and bumped into one of our favorite places to ear; Chipotle. We were able cool off, sit down, grab a bite, and waste another hour before we could go in the gates. It was a little crazy to be dressed in jeans and long sleeves for the hockey game but be sweating outside in the 80 plus degree heat. Something we still have to get used to.

When we were done eating we headed for the gates to go find our seats. The mascot for the Arizona Coyotes was outside. And YES Jayen freaked out. I kept trying to reassure him that he was nice and he didn't have to touch him. Brilyn had no fear and immediately ran up to him to give him high fives. I was so thankful the mascot could see the situation. He engaged Jayen from afar to howl like a coyote. Jayen finally understood and howled back at him. It was so great to see this interaction. Maybe a little bit of a breakthrough? 

The kids were holding up the certificates for coming to their first game and made an appearance on the jumbo-tron. I was trying to tell them the only way to get on it was to dance or kiss the person beside you. I think they liked that this worked too! Hockey was the perfect place for Jayen! He could be loud and scream whenever he wanted and no one looked at him different. Matt was able to join us for the third period and even experienced Jayen's howling! What a great night. So glad I was able to do it on my own. (ok with a little help from Dalan's friend's dad too! We had two extra tickets and were able to invite his friend and dad to join us. I really appreciated his help! And I think Brilyn has a new boyfriend now too.)

Special Day for Special Kids

After the craziness of yesterday, it was so nice to just have fun. Raising Special Kids, a program that provides support, training, and information for families of special need kids. They put on "A Special Day for Special Kids" event today at a railroad park. The kids couldn't wait to ride the train! We sent Matt to wait in line while Tami and I took the kids to explore some of the other activities. Dalan and Nolan found the rock wall and couldn't resist. 

They both did such a great job. Jayen was hesitant to try. He loves climbing the rock wall at therapy, but this looked a little too scary for him. He decided to stay in the stroller instead. We had a great day climbing, eating, riding, face painting, animal petting, and hanging out with our friends. We had to leave a little early to make it to an open house for a school we have been considering for Jayen. Wish we could have stayed longer!

The school looked nice but I have more questions than answers now. Still trying to figure out what is the best option for Jayen. We had to jump from the school to baseball. Saturday was a full day! But full of fun and friends.

Of Course!

We found out on Wednesday that the developmental pediatrician at the Melmed center had an opening this Friday with Dr. Melmed himself. We were ecstatic but quickly had to make arrangements for the other kids and make sure insurance had everything squared away. OF COURSE, they didn't and it was a nightmare of phone calls late last night into the early morning today. Close call! I called insurance on Wednesday to make sure everything was good to go, only to find out they put in one of the codes wrong; it was off by one number. The office on base was closed for training and the nurse that originally put the referral in was out of town until next week, of course! The only option I could think of was to call the insurance company 800 number and see if they could help me. I was informed that they had put the changes in the system and I just had to wait for the approval. I called Thursday to make sure everything was still on track and was told I just had to wait, of course! I called one more time Thursday evening and was in tears when I was told the way the representative put it in the system would not work, of course! I was frantic. Our appointment was in less than twelve hours and now for a second time the referral was put in incorrectly. I was not willing to accept that everyone else's fault was going to stop my son from getting his appointment. I was finally put in touch with a manager who assured me he would look into it and get back to me before he left for the night. I impatiently waited an hour and a half for his return call. He was able to get the codes switched for me and gave me the referral code over the phone. I went to bed still worked up over the days events and nervous about the actual appointment. I wasn't sure what the developmental pediatrician was going to tell us. Were we going to get more diagnoses we weren't prepared for?
Our friend Tami was so good to us and came to the house to play with Brilyn and pick up Dalan when he was done with soccer then take them both to her house. I'm so thankful to have help here in Arizona. Matt was able to come with us since this was such an important visit. Dr. Melmed was very nice. I love how you could see he was playing and interacting with Jayen to do his assessment rather than a very sterile, rigorous testing. We don't have the official report back yet, but it sounds like Jayen has a few more issues/diagnoses than we thought, of course! But most of all I love how Dr. Melmed told us that there was only one diagnosis we had to worry about; Jayen syndrome! He has Jayen syndrome and that is all we need to treat. I think that helped put things into perspective for me. We are going to treat Jayen for Jayen and not treating him for Autism, Anxiety, Behavior, Development Delay, Oppositional Defiant, Seizures, and Sleep Disturbance.

Happy St. Patty's Day!

Happy St. Patrick's Day from our little Leprechauns! They woke up this morning to chocolate gold coins hidden all over the house. They were able to hunt them all down then mom made them green eggs and ham for breakfast. After breakfast I started the crockpot so the corned beef and cabbage would be ready for dinner. I love sharing these fun and special days with the kids. So glad they had spring break so we could play and be silly all day!

White Tank Hike

We were a little worried how Jayen and Brilyn would handle hiking the mountains, so we started with a very easy trail and brought the stroller along. I couldn't have imagined how well they would do! There were a few options for the length of the hike. We were just going to go until we thought the kids wouldn't be able to go anymore. We passed the sign for the shortest trail and convinced the kids that we could keep going. When we got to the next option for turning back there was another sign convincing us to go another way to the waterfall. Once again we were able to convince the kids to go just a little further. It was absolutely worth every step; although I was a little disappointed that the waterfall in the desert is obviously not flowing with water. I think we all decided we can't wait to do this again. Hoping we can make this a family activity weekly!

 

Uncle Bob came to visit

Uncle Bob flew into Phoenix to stay with us for a couple days before heading to Las Vegas to visit cousins Kristin and Michelle. We were so excited to have a house guest! Brilyn gave up her room without a fuss, mainly because she got to sleep in Dalan's room as a special treat. It is so hard to move Jayen and to mess up his routine. We had told the kids when we moved in that Brilyn got the bigger room because she was going to have to share when visitors came. It probably would have been a better idea to put Jayen closer to us, but we knew that changing his routine with visitors would rock his world so he gets the smaller room but doesn't have to share.

Uncle Bob, of course, had to stock the fridge with cookies! We had to teach him how to use our KitchenAid mixer; he was scared he was going to burn the motor out. We all loved the cookies and the time we got to spend with him. Thanks Bob for the great memories and for helping my kids still know and love you! 

Starting a new Medicine

Today we met with Dr. Easter, Jayen's new pediatrician. After talking about our concerns about his behavior and attention we decided to try Jayen on Concerta instead of the Ritalin. We are kind of desperate. Just praying this doesn't change his sleep (or if it does for the better at least)!

CBD Hearing-Sharing Jayen's story

The Judiciary Hearing for two CBD bills were today. I was able to watch the hearing live on Nebraska Educational Television! (But around the same time had to be streaming the Wynot girls' basketball playoff game.) I was so happy to be part of this hearing and support those that could be there physically. It was funny getting the play by play and chatting with those in attendance through a facebook support group I belong to. I was so proud of the ones who were able to speak and share their stories. I had to leave to pick up Dalan from school so I was unable to watch for about an hour. I learned that during that time Senator Crawford introduced her bill AND shared Jayen's story. Twice now she has read his story and I didn't get to see or hear it. I'm continually praying for this to be an option for those who are honestly out of option. Praying Nebraska makes this possible!

First Baseball Practice with the new League

We had done some research before moving to Arizona and found another special needs baseball league in Surprise. I think that was one of reasons we were drawn to the city. Tonight was the first night of buddy baseball! And once again, daddy was convinced to be coach! Daddy was also able to convince our friend Eric to be a buddy!
We arrived at the park a little early and were able to walk around and sight see. We discovered a replacement for "Halleck Park". We loved taking the kids to the duck pond in Papillion and I think we might have just found something similar. The ducks were hungry and swarmed to get a couple bites of the cereal we could smuggle away from Brilyn. There's fishing at the pond too! Can't wait to come back and have a picnic and go fishing. Maybe on Saturday before the next baseball game.
Things are run a little different here than what we are used to. It was only a problem for one member of our family. The buddies in this program are required to be at least 12 years old. Jayen's buddy and dad's ball boy is not 12 years old. Dalan was so upset he wasn't able to help. He was kind of rudely escorted off the field and told he couldn't help. I'm a little disappointed as well. I'm not sure why they would every shoo away volunteers. I also think some of the best volunteers would be the people who spend the most time with the kids.
The first game/practice was fun; Eric definitely got a work out following Jayen around, Matt made quite an impression on some of the kids, and Jayen smiled nearly the entire time. Can't wait to play again on Saturday!

New Training Wheels?

Tonight we got the bikes out and were getting ready to go for a ride. I have been pulling Brilyn and Jayen in the bike trailer to school for the last week and they have been fighting nearly every day. Matt and I must have been talking telepathically because he hooked up the trail a bike to see if it would work for Jayen. I was wondering if he would be capable to doing it too. I couldn't have prepared myself for his reaction. Jayen was not only able to balance enough to ride but would help pedal. He was giggling and smiling the entire time. He felt like such a big kid. I think we might have to do this more often!

-Y; We've been working on this for a while!

Contrary to my sister's belief, this has no additional meaning. Tonight we sat down with the kids to watch a movie. Matt chose "Baby's Day Out", a movie I have seen numerous times and couldn't wait to share with the kids. Halfway through the movie Jayen shouted the word baby with perfect enunciation. Matt and I looked at each other to make sure we both heard right. We asked Jayen to repeat it again and with no difficulty he was able to say the word. So we went a little further to see if he could finally pronounce two words we have repeatedly worked on. Once again, Matt and I looked at each other and smiled. Jayen was able to say mommy, daddy, and baby! Something finally clicked for him! We've been trying to smoosh those syllables together for months. He had been able to pronounce them in isolated syllables, but NEVER before in one word. I love this little man and know that he will continue to make progress. I am still waiting patiently for the day I hear, "I love you mommy!"

 

 

Three emails and finally a response

I had to send another email today since I still hadn't heard back from our case manager.

 

Ms. Miller,

I have sent you two communications and have not heard a response from either. 

I would also like to ask when Jayen will be starting the behavior program Ms. Rose mentioned, I believe it was called the STAR program.

Thanks

Nicole Hochstein

 

A response was finally received around 3pm.

 

Hello,
I apologize for the delayed response.
When a team member who has been assigned to Jayen is absent, a different staff member from the room will take over those responsibilities. The campus will then go through the list of possibilities for pulling in an additional staff member for the day just to support the room. However, someone will always be assigned to Jayen.
I have been in contact with our behavior coach regarding the STAR program. It is not specifically for behavior, but will teach him functional routines and communication skills. This, in turn, may help with any behavior concerns because it should reduce his frustrations. She and I will meet on Thursday and will hopefully get that started by Monday.
I definitely appreciate your continued open communication and apologize that you feel let down. Please know that we also want to make sure we are providing the best possible care for your son.
Respectfully,
Brandy Miller

 

I am worried about the response. So when one para is absent you are going to take the only other para in the classroom and assign them specifically to Jayen so there is not support for the other kids. Why do I feel that is only going to cause more issues if it is truly what happens anyway. And if that is the protocol then why did it not happen the last two days of school? Hoping and praying that some day we will have this all figured out!