observation

After a few emails and some gracious teachers and principal, I was able to do an observation at Jayen's school today. We went to the office as soon as we got there to get my official visitors badge then headed for the kindergarten gate as always. I kept telling Jayen that I was going to go with him today but I wasn't taking him home, he could stay. But as soon as the gates opened and kids were walking through, he pushed me away and said bye mom. I reminded him that I was coming to watch. He didn't like the idea so I stayed back a few minutes then walked through the gate. Jayen played independently but near his peers. He played on the jungle gym for a little bit then switched to the swings. Mrs. Mullins, his teacher, noticed he was swinging on his stomach instead of his bottom and convinced him to sit instead. She then asked Jayen if he needed a push. She invited another boy over and he pushed Jayen on the swings. The smile on his face and twinkle in his eye was so amazing! I was so thankful for this interaction!
After a few more minutes the bell rang and all of the children stopped playing, picked up their backpacks, and lined up behind their respective teachers. Jayen didn't miss a beat and kept right up with his peers. This is what I strive for! This is what I hope all of his day is like! This is my dream for him!
As they headed into their classroom the kids were greeted with a handshake, high five, or hug. I smiled and cried a little as this reminded me of one of the greatest teacher I know, Mrs. Renee Loftus. She did this same thing with her second graders when I taught with her. Only the greatest know how to reach their students!!!! After his high five, Jayen was told to head to Mrs. Lake's classroom. I was a little disappointed he didn't go into the classroom and drop off his backpack like the rest of the students. I was only their to observe though, so I took mental note and went on!
In Mrs. Lake's classroom Jayen hung up his backpack then sat down to do his morning worksheet. Mrs. Lake had just finished working with two other students and was able to teach one on one with Jayen. I was so happy with the attention she gave him. I feel this is what is going to help him learn the concepts. After the worksheet Jayen was supposed to get a book and sit back at his desk. I love that books are available to him, but I felt like this was wasted time. Jayen did not orient the book nor open it the entire time he was sitting there. The room was a very distracting place; the phone was ringing, kids were out of their seats, one child was physically upset and loudly displaying vocalisms, children were running out of the room.
At 8:40 the one on one para for Jayen finally arrived and a little while later the rest of the students arrived, a bus was late. Mrs. Lake turned the projector on and put on silly movement songs for the kids to get their sillies out and start their day. The other students were settled and Mrs. Lake was ready to start her reading lesson. She used the projector and displayed a worksheet on the board. Each child was given a set of 5 cards with a vowel printed on it. The worksheet had a picture above with letters below. The first one was a picture of what looked like a spider with the letters b_ g underneath. The children were supposed to hold up the vowel that corresponded with the sound that would complete the word. Although the room was extremely distracting, Jayen was able to follow along with maximum redirection. After the whole group lesson, the students were to grab workboxes and work independently while Mrs. Lake called them up one by one to assess their understanding of the concept taught. I really liked this! This is when data is taken! This is when you get to see teaching happen! I was really impressed, until... Jayen completed one workbox then was called up for his assessment. After his assessment he was allowed to grab more workboxes or a book. Once again he chose a book and sat without opening it. I really feel like this would be an amazing time for him to go back into the classroom. I would love to have her assess Jayen first then send him back to his general education classroom. I also felt like this would have been such a great opportunity for the para to write in Jayen's communication notebook. But not once did the notebook come out of his backpack and even worse, not once did the IPad come out either. His communication device did not go with him ANYWHERE.
After an incredibly long time of sitting idependently, it was time to transition back to the general education classroom. Jayen went to the bathroom before leaving the room but was not assisted or check on to remind him to wash his hands or flush the toilet. We are also keeping track of his outputs so without checking on him I'm not sure how they are writing down that he had went pee at 9:50. After he was finished in the bathroom we headed to the general education classroom and Jayen quickly joined his peers.
After walking in Jayen saw the kids were being dismissed to the rug and joined them. Mrs. Mullins was trying to introduce the kids to some new games that she was hoping to bring into rotations. Jayen sat quietly during the instructions and once was even recognized as a peer model. After instructions, the kids were dismissed back to their tables by table color. Jayen recognized when his table was called and got up off the rug and sat down in his chair at his respective table. He was able to participate with his table peers and completed an alphabet matching puzzle; some pieces independently.
When the kiddos finished their games, it was time for clean-up and dismissal for lunch. Jayen appropriately cleaned up and listened for the directions to be dismissed for the lunch line. I was able to follow him to the lunch room then shortly after was told bye numerous times. I politely accepted his request and left to pick up Brilyn from school. I had a great visit in the morning and was excited to come back to see the afternoon resource time.

I was invited to watch the resource teacher working with a few first graders. She currently doesn't have a pull out group for kindergarten. Mrs. Hodge was a very polite and introduced herself immediately. She gave me a place to sit and told me that her paraprofessional went to get the kiddos and would be back soon. The para works with the first graders under her supervision. The para did an appropriate job with the students. After they left I was able to sneak a couple more minutes with Mrs. Hodge and learned that she is currently the long term substitute and would only be there until December. Her husband has some health issues and she can't commit to any more time than that. Well ... I guess I learned that I don't feel this would be the best solution for Jayen. I'm glad I was able to observe and see exactly what this option looked like.

Overall it was an extremely helpful visit. I would really love to come back and see the afternoon since I didn't get to see a lot of the core learning. I hope they will allow me another visit.

Jayen, JAYEN, Bye Jayen

This morning when dropping Jayen off at school, I had to hug the mom of a little boy whom independently walked up to Jayen and told him hi. The little boy lives two houses down from us and has played with Jayen a couple of times, but to go out of his way to say hi made my heart smile!!! But after school today, four different kids made it a point to walk away from their parents to tell him bye. He has FRIENDS!!!!! This is everything I pray for. I pray that they will understand him. I pray that they will accept him. I pray that they are not scared of him.
My prayers are being answered!

Rough Day

I hate to make so much of Jayen's struggles about me. I hate that I feel this way. I don't ever want him to feel like a burden, but I can't keep doing this. I can't keep draining everything I have to make sure he is getting everything he needs. Today was too much! After dropping the boys off at school, we rushed home to grab our stuff for the gym. I've been trying to make it a routine to take better care of myself. We rushed home after the gym to get lunch before rushing to get gas before Matt left for work, then rushed home to shower, put Brilyn down for a nap, get ready for the rest of the day, rush to pick Jayen up from school, rush to therapy, rush home to get Dalan, rush to school for curriculum night, rush from one teacher's room to the next, rush to get to the last buddy bowling, rush home to finish homework, rush to get kids in bed. I'm so exhausted. My head is spinning.
I hate that I felt like I couldn't give my best to anything because I was stretched so thin. I lost my patience with the kids on numerous occasions. I couldn't give any attention to friends I haven't talked to in a while. I couldn't do anything but try to survive and get through all of it. I failed today. I failed and I can't even say that tomorrow is another day and will be better, because tomorrow starts the rat race all over again. Rush to school, rush to drop Brilyn off, rush to the gym, rush to pick Brilyn up, rush to get her lunch, rush to put her in bed, rush to pick up Jayen, rush to therapy, rush home, etc.
I can't balance it all.

Fuming, Fuming, Fuming

I try to be patient. I try to put myself in their shoes. I try to be understanding. But this has gone too far. Jayen was absent for school on Monday because of his neurosurgeon appointment. Tuesday when he came back for school there was no para waiting for Jayen at the gate as we had previously planned. Mrs. Mullins, the kindergarten teacher, was able to locate Mrs. Lake, the special education teacher, to see if someone was available. She didn't have anyone for Jayen so he was forced to leave the playground and go sit in Mrs. Lake's classroom until a para was available. He lost out on such an important time building friendships with his peers. I left upset and went to the front office to talk to Mr. Frazier, the principal. He was at a principal meeting and wasn't available so we waited around to talk to Mrs. McKnight, the vice-principal. She said she would head there right away and be with him. This didn't really solve the problem, but I was confident enough that if she was stuck with him that they would have to find someone to relieve her at least. I went home and tried to wait patiently until lunch time when I would go in and be able to see if someone was with him. Thankfully there was someone with him and she was actually pretty good. She is a social butterfly, so keeping her focused on Jayen will be a bit of a challenge. She is also one of the crossing guards, so I knew she would have to leave him early. I was going to let it play out and see what they figured out.

Today when we went to drop him off, once again there was no one waiting. I knew this wasn't going to end well so Matt took him back to see if someone was waiting near the playground. There was no para nor his safety backpack in sight. Mrs. Mullins tried to knock on Mrs. Lake door and there was no answer. Matt was forced to stay with Jayen until someone became available. He stayed on the playground then had to follow the class inside as there was still no one nor his safety backpack around. On the way into the classroom Mrs. Mullins sent Jayen to Mrs. Lake's classroom and Matt had to follow. In Mrs. Lake classroom, Matt said there was still no one available for Jayen. He was impressed with Jayen sitting down and working amid the chaos in the classroom. The learning environment is not an adequate place for Jayen to learn. Students were running all around the classroom and even running out of the room. Matt looked at the teacher to see what she was going to do. Was she going to run after him? Was she going to call the office for assistance? He looked at her and she said, "Someone will get him." Since no one was doing anything, Matt volunteered to go after the student. While looking for the missing student, Matt ran into Mrs. McKnight. After returning to the classroom with the missing student and Mrs. McKnight, Mrs. McKnight sat with Jayen. Eventually, the para that was with him yesterday arrived and took over. At this point Matt finally left the school. 

I just keep thinking that I need to call an IEP meeting and request a different placement. I've sent an email to the principal asking what other placements are available. I haven't heard back from him yet. I hope we can work together to figure this out.

He has a screw loose

We've been noticing a bump on Jayen's front temple for quite a while now. It has really started sticking out more and more, enough that we are scared when he gets a hair cut that the clippers could catch on it. Since brain surgery, we've noticed this screw. But it has slowly started sticking out more and more. We mentioned it to Dr. Easter and he put in a referral to a neurosurgeon.
Today we met with Dr. Adelson at Phoenix Children's Hospital. He confirmed what we have been joking about for a while now; Jayen has a screw loose! Somehow one of his screws holding the titanium plates in place came out and it floating around under his skin.
The doctor gave us the option of leaving it alone or doing surgery. If we leave it alone we could risk infection. After talking about it alone, Matt and I hesitantly decided that it would be best to remove the screw. Surgery has been scheduled for September 9, 2016. I'm not prepared to put him back under again. I'm not prepared for them to cut open his head again. This is going to suck!

How does he see himself

Dalan is such a good big brother and is always trying to teach Jayen new things. I don't know that I was thrilled with his newest teaching though. Jayen saw Dalan trying to look up videos on YouTube Kids by pressing the microphone button and speaking what he was looking for. Jayen liked that and wanted to try it too. Dalan showed him where the microphone button was and Jayen tried telling the IPad what he wanted to watch. He kept yelling at it, just like big brother does when he can't get it to recognize what he is requesting. It was so amazing to watch. And as I peeked around the corner not to draw attention to myself, I secretly prayed that the darn thing would recognize what he was saying. Of course, Jayen's speech isn't recognizable yet. He continues to try day after day but with no success. It really made me wonder how he sees himself. Does he think he is any different than his peers? Does he understand that his speech isn't like theirs? I love that he is always so happy, go lucky! I love that not much bothers him or keeps him down. But I just wonder what he thinks of himself. And right now I have to think he thinks pretty highly!

lunch disaster

Fuming right now and don't know how to stop it. So many things happened! I tried staying away and giving the staff some room. I'm not sure that was a good idea. I went to pick up Jayen and he was no where to be found. He wasn't with his class and that is where he is supposed to be. After Mrs. Mullins saw me and saw the look on my face, she mentioned he was waiting in the office. I'm not sure why, but we headed towards the office. We were caught half way there by Mr. Frazier, the principal. He was coming to find us since Jayen was in the office for so long. I would really like Jayen to be dismissed with his class. Last year he did so good announcing to his teacher "I see mom!'. I don't think this should be a problem, but I will talk to Mrs. Lake and see what we can do.

As soon as we got home I quickly opened Jayen's communication notebook to see how his day went. We had to pack a meal for feeding therapy and get on the road so it was just a quick glance. But once again I was floored. I grabbed the notebook, some food for therapy, threw the kids in the car and headed out the door. I shared the notebook with the feeding therapist. Holy crap. Are they serious? All he ate all day were pears? He loves tater tots. Why did he not eat tater tots? Was he offered the hamburger? I sent along a gogurt and pediasure too. The pediasure was all sent home so it wasn't touched either. 

I don't know what to do other than continue to come for lunch and personally make sure that he is eating more. I can try to train the paraprofessional working with him, but entire they hire a full time person I will be training someone new everyday. I have to do what is best for Jayen. I know he doesn't want me there, but I need to make sure he is eating more. He's at such a crucial stage with his weight that I'm so scared he is going to fall below the threshold and we will have to look at surgical options for him. I need the schools help. I need him to eat as much as possible at school.

Where has time gone?

Where has the time gone? I know everyone says that. I know where the time has gone. I've spent so much of that time sitting in waiting rooms at hospitals and therapy centers, in conference rooms at schools and at our dining room table doing ABA therapy. We've spent so many days, months, and years preparing him for moments like this! I know exactly where the time has gone. But of course, I wish it would slow down too! Every time this little man leaves my sight I am entrusting another adult with his life. Every time he leaves, I pray that the adult will treat him with respect and help him learn and grow so one day I can be miserable because he has finally left the house. I know he is only 6 and I know this is only Kindergarten, but every day and every therapy and every doctor is going to help get him to a place of independence. Every day is a rat race to get him to some therapy, appointment, or social activity. But I know in the end it will all be worth it! I know that some day I will kick my baby out of the nest and his beautiful wings will open and he will fly further than any of us ever thought.

Since moving to Arizona it has been a struggle with school. This year we are back to our home school with both boys attending. I've always dreamed of them being in the same school. From our time in Bellevue when Dalan would come home excited because he saw Jayen on the playground or at lunch and gave him a hug, I've dreamed that they could have that same interaction here. I hope this year is great for both of them. I also hope this will give mommy some much needed time to relax or do something for me and also some great bonding time with my last baby at home. One more year and all of them will be out of the house. Wow, yes, where has time gone?

Before School Meeting

I couldn't have been more scared for this meeting. After the meet the teacher night last night and seeing the schedule they currently had in place for Jayen I was so nervous. I want him to have friends. I want him to have ownership of a teacher and classroom. I want him included! I grabbed every paper I could find that would help me. But the best piece of evidence I could have asked for was thankfully written on a very legal binding IEP! It specifically stated that Jayen would be in his classroom for everything except reading, writing, and math.

Jayen's ABA tutor, Ms. Mayra, was able to meet us at school. It was so great to have her there. This was also her last day with Jayen. We had to switch our schedule around to accommodate a full school day and that meant loosing her. We are so sad to see her go. She knows she is always welcome in our home and can stop by any time! Thank you for all the support you have given him. He is where he is because of you! You will be missed Mayra!
When we arrived at the conference room, we set up Jayen and Ms. Mayra in the corner where they could still continue their work but be within eye sight if the teachers would have liked to see him or ask questions. I laid out all of my notebooks, binders, and information I had prepared. I sort of took charge of the meeting at that point. I knew there were so many things I wanted to cover and not enough time. I had overheard the assistant principal the day before that there was another meeting an hour and a half after ours. We better get started!
We were able to talk about Jayen's medical needs in quite length with the school nurse while the team was present. A new plan will have to be made and put in place for Jayen's seizure protocol. Team members will have to be assigned a role. We were given a bunch of forms to fill out for everything from carrying the medicine with him to a chronic illness form to get him out of school early twice a week. I was able to leave the backpack with the nurse and was assured it would be with the para in the morning. Although a new one on one has not been hired for Jayen, we were assured that they would pull someone to fulfill that position until one could be hired. We also discussed his feeding issues and tried to convey the need for someone to watch him closely. I'm not sure they understood the extend of his feeding needs, but I will make sure to explain this more.
Most of the meeting time was spent on Jayen's schedule and what we would like to see for next year. We were so thankful that everyone was willing to work together to make sure that Jayen received the support he needs while also joining his peers. We were so lucky that Mrs. Lake took so much time to line her schedule up with the elementary schedule. Jayen will still be able to participate in the general education classroom while also receiving individual support for the areas of Math, Reading, and Writing. I hope this can be the best of both worlds. Ideally I would love to see full inclusion, but I'm dealing with it and can't wait to see the progress he will make. Today truly was a great meeting. We were all able to come together to figure out what is best for Jayen. I am really looking forward to this year! I know there will be hiccups, but I am hopeful that we can work them out as a team!
We left the meeting with presents for each of the members. They were each given a copy of Jayen's portfolio and a snack to help them get through the first day of school!

My School

Tonight was Meet the Teacher night at school for the boys. We met in the gymnasium to listen to the principal before being dismissed to find their new teachers and classrooms. While sitting in the gym, Jayen looked around then turned towards us and in perfect clarity said, "My school!". I was so proud! Proud that he said a sentence! Proud that he said it with such clarity! Proud that he knew it was his school! Proud that he was proud!

He said it a couple more times before Mr. Frasier was done with his speech. Then we were all able to find the new teachers. We stayed behind and talked to the new P.E. teacher, Mrs. Taylor. The kids are going to have a hard time calling her that since they know her a Ms. Lori, our next door neighbor. I'm hopeful that Jayen will be in her class. I also tried to show him the lunch line but he wanted nothing to do with it. Hopefully he remembers from summer school. After the gym cleared out we made our way inside to find out who the new teachers will be. I had a sigh of relief when we saw Dalan was assigned to Mrs. Scaife's classroom. I've heard such great things about her and I just really needed a good teacher this year! Dalan spent some time in her classroom last year and remembered her, she remembered him too and said she was very excited when she found out he was on her class list.
After finding out teachers for some friends who were out of town, we headed towards the kindergarten hall. My nerves started building. I knew our options were Mrs. Scott, she was Jayen's teacher last year, or Mrs. Mullins, she was Dalan's first grade teacher when we moved here. I wasn't sure which would be better. Mrs. Scoot at the end of last year, seemed distant and not interested. It made me feel like she didn't want Jayen again. That is not how I would want her to feel. Although having someone that already knows Jayen would have been nice. Mrs. Mullins was good with Dalan and I think she really cares for the students. The wait was over and we were assigned to Mrs. Mullins classroom. After walking into her classroom we were surprised to see Eli, our next door neighbor. Eli and Jayen play basketball outside sometimes. It was exciting to know that he will have someone he knows and sees outside of school in his classroom. He also has a friend from preschool in his class.

We weren't sure if the special education teacher would be there or not, but we stopped by her classroom to check. Mrs. Lake was in her room and helped Jayen find his desk, his cubby for his backpack, his drawer of supplies, and his schedule. This all seemed a little much for just a pull-out kid. We were under the impression that he was only supposed to be pulled out for Math, Reading, and Writing. But his schedule had him in the classroom for the entire day. We overheard Mrs. Lake telling another parent that the kids would eat lunch with the first graders. So he wouldn't even be able to eat lunch with his class? I didn't get it and the more time I spent there the hotter I got. I think she could see my frustration. After mentioning that Jayen was only supposed to be pulled out for those core subject, Mrs. Lake said we can work it out. I politely asked if she would be at the meeting I scheduled with Mr. Frasier tomorrow. She was aware of it and promised to be there.

I didn't leave with the warm fuzzies I was hoping for. I was very worried and scared for what Jayen's year in Kindergarten was going to be again.