Not Included Inclusion

Matt and I were invited to attend a Spirit & Pride assembly at school today. We were so excited to see both of our boys at school and show them how much we and the community are behind them! Dalan has figure it out as well, but when the parents get the invitation it means their child is being honored. Today, Dalan was awarded the "Be Proactive" award. The awards honors someone who has a "can do" attitude, always tries their best at everything they do, follows directions, does the right thing without being asked, chooses their best actions, attitudes and moods, and doesn't blame others for wrong doings. We are so proud of him and are so happy to celebrate his accomplishment. We really wish Jayen could have been there to witness it as well. 

For some reason, Jayen and the special education class were not there for the assembly. The para, who will be his one on one, was there to watch her son get an award. I asked why he wasn't there and she mentioned that some of the students in that classroom would not be able to handle it. But why would that disclude Jayen? He can handle it and should handle it. Not only would he be so proud to see his brother get an award, but to see all the positive role models today. He needs these role models. He should look up to them. He should feel the sense of community that this exact event is meant to provide. 

We have a meeting set up in a couple of weeks to discuss other topics. I will add this to the list. 

First NFL Game

We just happened to be in the right place at the right time wearing the right clothes! Yesterday, Dalan and I had server and EMHC training. Ms. Loida saw Dalan's Cardinals jersey and asked if we like football. The only thought running through my head was, "Is the Pope Catholic?". Well of course we do! She had extra tickets to the Cardinals game and asked if we would like to go. I never imagined what she was actually giving us. Not only did she give us five INCREDIBLE seats but also free parking pass. I told Dalan if he passed his test that Ms. Loida had a surprise for him. I thought the extra motivation would help him.

I was supposed to have a mommy morning with a group of friends, but was really hoping I could make all of it work. I ended up driving myself to Junk in the Trunk event and left a little early, but still had an amazing time. I met up with Matt and the kids right after Sunday school and we headed straight to the stadium. It took a little longer than we hoped to ride the shuttle, so by the time we got to our seats the game had already started.

I think we threw Jayen into the action a little too fast. The crowd was very excited and very loud. Jayen was screaming and crying and very upset. He kept asking to go home. Matt tried to console him but he just wanted to leave. I eventually switched and gave Brilyn to Matt and I took Jayen. I started by squeezing him tightly and giving him that input. I would ask him if he wanted to hold his ears or if he wanted me to. We started with mostly me holding them then slowly he was able to take control and hold his ears when it was too much. I was able to talk him through the plays and give him words to express what was going on. The announcer loved screaming "Thiiiiiiiiirrrrrrrd Down!" when the Cardinals were on defense. I was talking to Jayen and helped him put out three fingers then sign down when they were announcing it. He started to participate and get into the game. We discussed when it was time to kick the ball and Jayen watched intently. It may have taken us the whole first half, but by the end of the game he was screaming TOUCHDOWN and high fiving nearly everyone in our row and the row in front of us. The lady sitting in front of me even stopped to tell us her nephew has trouble with the sounds too. She was impressed that he stuck it out.

We had the most amazing time! It was so fun to experience our first NFL game as a family. It may have made us "a little bit" of Cardinals fans.  

Full Moon Frenzy

I'm blaming tonight on this thing. This thing must be pulling the earth and making my kids go crazy! This full moon must stop!

I've always felt like a chauffer and babysitter. My time and input are not valued and I could easily be replaced. Today didn't help to make me feel any less than what I always feel. I quite often am running from place to place, between children, shoving food down their throats in the car because there is no time to wait until we get home because when we get home it is bed time. Tonight was a bit too much for me. Tonight was the breaking point. After all the running around we did this morning, we ran home to get some food in Brilyn before I had to put her down for a nap. I was almost two hours late for nap time, which meant that she was not going to wake up in time for me to get the boys from school. Thankfully Matt was home and could stay this time. I ran to school to get Jayen, then ran back home to get his food ready for feeding therapy, then ran to feeding therapy leaving specific instructions for Matt and the other kids, ran from therapy to the grocery, ran to baseball, left baseball early to drop off Dalan at football, ran back to baseball to hopefully enjoy a few minutes sitting next to a friend I haven't talked to in too long, only to get back to baseball and find out Jayen decided to pee and poop his pants, so I had to grab him and Brilyn and run home to change his clothes, then run back to football to try to see some of Dalan's game before we have to run back home to finish homework (since Dad didn't help with it!) and get the kids to bed.

There wasn't a single second I wasn't running! I'm going to start running the other direction when days start out like this again! I need some me time! I need to feel valued and appreciated and I feel exactly opposite!

Afternoon Observation

I'm so thankful I was given the opportunity to observe Jayen's school day again. Last week I was able to observe the morning so today I wanted to observe the afternoon. This is also when math and writing are on the schedule and I would love to see these core subjects.
I met up with Jayen and his class outside for recess after lunch. Jayen was playing near his peers but didn't really play with anyone. He was still all smiles and enjoying his time with his friends! When the whistle blew, Jayen followed the directions and sat on the bench with Mrs. Lake's class. They headed back into the special education classroom. According to the schedule we made as a team the day before school started, Jayen was supposed to be heading to re-start; a calendar time activity. During this time the teacher was reading a big book to the class, Jayen went to the bathroom and washed his hands so he didn't get a chance to listen to the book before it was time to meet back up with the general education class to go to specials with them. The para told him to grab his backpack and head to class. I didn't understand why he was to bring his backpack and was actually upset about it. What does he need in there? Do any of the other kids wear their backpacks to art? It wasn't because of his IPad, because once again it didn't come out of his backpack from beginning of the school day to the end. He was actually a little late meeting up with the class and they were gone by the time we got there. We met up with them just before they walked into the art room.
I was very impressed with the art teacher and the way she explained the activity to the kids. She asked each of them to put their name on the paper. At this time Jayen's para was writing in his communication binder, that was in his backpack and is possibly the only reason she had him bring it to art. Although Jayen is nearly independent with writing his name, he still needs assistance and the para was busy. The next direction from the art teacher was to turn the paper over and put your hands on your head. Jayen must have been tuned into that direction because every time the teacher tried gaining the class's attention by asking them to put their hands on their heads, Jayen was prompt and ready. The students were directed to use their imaginary pencils, i.e. their fingers, and draw a line from the top of their page to the bottom. Then from one side to the other side. After using their imaginary pencils they were allowed to repeat the directions with their real pencils. Jayen was able to do the first line, but it took him much longer than the rest of the class. They were on their third line before he was finished with his first. I could see that he was starting to get a little frustrated. It was too many steps at once for him to remember. I tried sitting on my hands and remembering I was only there for an observation. After a few more minutes of struggling, the para came over and tried to show Jayen what to do. After drawing three lines top to bottom and three lines side to side, there were abstract shapes all over the paper. The students were supposed to grab 5 crayons and color at least two shapes with each color until all the shapes were filled. Jayen took a crayon and drew one line in each. He struggles with coloring because it is very taxing on his muscles. The para left Jayen's side again to write in the notebook. I took this opportunity to talk to her about the skill that was being worked on. She mentioned that sometimes she lets Jayen just color one line. I talked about determining what the skill was that you are working on at the time. If you are working on counting objects and the directions are to color 7 shapes, then the skill is really to count and not to color. But when in art class, the goal is to work on coloring. This is when you should try to encourage him to fill in the entire shape. If all he can accomplish in his class time is one of the squares, then encourage him to fill it in until there is no white remaining. I also asked if she had ever heard of wikki stix. I think this would have been a great opportunity to use something like the wikki stix to create a boundary for the shapes that Jayen was to color. Jayen and the para worked on the project for a little longer until the art teacher asked the kids to start clean up. Jayen followed the directions the lined up with the class. He walked appropriately through the hallways all the way to the hallway that splits the general education classroom from the special education classroom. The class told Jayen goodbye and he headed towards the special education room.
Once back in the classroom he hung up his backpack then sat in his seat for math. The room was just as distracting as the day I observed in the morning. Mrs. Lake turned on the projector and displayed a worksheet on the board. I assumed the goal was learning addition problems, but it was never discussed in that manner. The problem displayed on the board were similar to this worksheet.

The teacher had a student come up and count the first set of objects then write the number in the box. Then another student came up and counted the second set, if the first student didn't complete it. Then another student was to count them all. While the answer was correct, I didn't see the object of the lesson being taught. It was explained to the students that they were adding. That the symbol + meant to count them all. It simply was a counting exercise. This could have been the objective, but it didn't seem like the word problems matched the objective then. In all the class completed two horizontal addition problems and two vertical addition problems. I was waiting for the individual lessons like what I witness in the morning observation with reading. But nothing came after the lesson. The kids were instructed to grab their snacks. A Magic School Bus movie was turned on the projector then the teacher asked if the paras were ok then left the room. For the next 30 minutes the kids were to sit in their chairs, eat their snacks, and watch the movie. I WAS FURIOUS! What educational value was there in this? Could his time not be spent in the general education classroom learning with his peers? Jayen sat appropriately until his snack was all gone. He got out of his chair, put his lunchbox away, and tried to grab a book off the bookshelf. He looked at his para for permission and she looked back at him and shook her head no. AGAIN I WAS FURIOUS!!!! A little bit later another student was helped grabbing a center from the back of the room. Jayen noticed and quickly went to grab one as well. Jayen brought the box back to his seat, opened it, looked around at the contents then went to put the center back. He chose another center and returned to his seat. This center was bead stringing. Jayen pulled the beads off the string but didn't look at pattern card to restring. He once again did not complete the center and went to put it away. He then grabbed a nuts and bolts type center and played with one of the bolts on a wooden dowel just making it go up and down. This kept him busy until 130 when the teacher returned and his para left the classroom. The students were instructed to put their items away and get ready for recess. Even though they just had 30 minutes of down time, they were now heading outside for another 30 minutes of down time. Once outside Jayen found a yellow ball that he liked and climbed to the top of the playground to sit by the slide. He stayed there without going down until nearly 12 minutes later when the Kindergarten classes came out. When more friends arrived Jayen's attitude changed and he was in a much happier mood. He found a swing and played near friends until the whistle blew at 2 o'clock. Jayen followed directions as before and sat on the red bench while the special education teacher grabbed the rest of the students. They walked back to the special education classroom and were to work on writing.

Mrs. Lake introduced the lesson by reminding the students of the frog jump letters they have previously completed. She then showed them the new letter they were going to work on today; P. She modeled how to cut out the two pieces to make the letter. The students were then given a scissors, glue, the worksheet and a piece of construction paper. Mrs. Lake sat directing in front of Jayen, since his para was no longer there, and held the paper while he cut. I did step in and asked Jayen to show Mrs. Lake how we repeat, "slow down" while cutting to remind Jayen to slow down and look where he is going. I also offered the suggestion of using thicker paper for the cutting activities and to make the sheets smaller size. Jayen didn't like that I was telling Mrs. Lake suggestions and kept pushing me away. I had to inform him that I wasn't leaving until he told Mrs. Lake, "slow down". He said it quickly and quietly then pushed me away. I took the hint and went back to sit in my far off chair. The activity took about 20 minutes to complete then the students were directed, once again, to grab work boxes.

On Tuesdays, I have to pick Jayen up early to head to therapy so I felt like this was an appropriate time to just grab him and go.

I can't wait until our BCBA Melissa has to opportunity to observe.

Is he a REAL BOY yet?

Today, while waiting for the paraprofessional to pick Jayen up at the gate, we saw friend after friend tell their parents goodbye and walk through the gate and straight to the playground to play. Meanwhile, we were stuck on the outside looking in; waiting, just waiting. Waiting for the adult who is to supervise my child to finally peek his head out the door so Jayen could join his friends on the playground. And all that kept running through my head is Pinocchio saying, "I just want to be a real boy!" Obviously these are not Jayen's words, but they are mine. My words for him! My expression for how my heart feels for him. He doesn't get to rush through the gate as soon as it is opened like his friends. He doesn't get to race to the best swing or bigger slide to be the first one on it. He doesn't get the opportunity to do what all of his friends are doing. He has to wait; wait for the adult to finally decide he is ready to come out and supervise. After he finally came out, I kissed Jayen goodbye too many times to make him embarrassed like all the other kids then slowly walked home with a little tear in my eye. I have to be strong for him, but this stinks.

I know he has many struggle to face in life and this is just a drop in the bucket. I'm also really struggling with this school situation of being in two different classrooms. He is technically on the special education teacher's roster, but is still part of a general education class. So he is and isn't part of both classrooms. Most of the time I feel like he isn't part of either. That no one claims him.
Dalan's class has been travelling to Jayen's general education classroom to buddy up with some of the students to help them with their letters and reading. Every time Dalan goes, he doesn't see Jayen. These are the moments I miss. In Nebraska, Dalan would come home and be so proud of the days he got to see Jayen in the lunchroom or at recess. The smile on both of their faces when they told me where they saw each other melted my heart. But for some reason, they never see each other. Even when Dalan travels to Jayen's room. After the fourth or fifth time of Dalan being disappointed he didn't see Jayen, I sent an email to the two teachers asking if there was any way that Jayen could be included in such a fun activity. I hope the two of them will work together to figure out Jayen's schedule. I truly think it would be inspirational for both of them!
And today I received an email from the general education teacher about a permission slip she previously sent home for an upcoming field trip. I didn't receive a permission slip. Is he not invited? Is he not part of the class that is going?

I just want him to feel included. I don't want him left out.

Screw Out!

We've noticed a bump on the side of Jayen's head for an incredibly long time, pretty much since the day it was put in. But it kept getting bigger and bigger to the point where we were scared it would catch on hair clippers the next time he got his hair cut. After meeting with a neurosurgeon here, we decided it would be best for the screw to be removed. Well, today is that day!

This morning we woke up long before the rooster would even think about crowing! We had to be at the hospital by 5:30 in the morning and it is nearly a 40 minute drive from our house to the hospital. We had been talking to Jayen to prepare him for what was going to happen today. We are really trying to let him take an active role in his medical journey. We told him that they were taking the screw out today. He repeated, "screw out?". Yep buddy, today they are taking the screw out.

Jayen was a little too chipper for that early in the morning, but I was just glad he wasn't upset or fighting us about it yet. After checking in and getting lost trying to find the right floor, we sat down to do a little homework before we were called back.

When they finally called us back, we changed Jayen into his scrubs and were able to talk to the doctors before the procedure. The neurosurgeon fellow came in to talk to us and asked if we had any questions. I rattled off as many as my brain could articulate. When I came to the question of where and how she was going to cut, I wasn't prepared for her answer. She told us she was going to re-open his previously incision so she wouldn't loose any more blood flow to that area. Ummmm....WAIT, you are going to re-open the entire right side of his skull to get to this screw? Will there be the same swelling as the first time? Will you look to see if the others screws are still intact while you have him that open? What will recovery be like if you are opening that whole area again? I couldn't keep my mind from remembering what it was like the first time. I couldn't keep the tears from rolling down my face. I wasn't prepared for this.

After I couldn't think of any more questions to ask, she left the room. Right behind her was a nice gentleman from Child Life. Whomever invented this position and made it a necessity in the children's hospitals is a genius. We really loved the Child Life specialists in Minnesota. They helped us explain situations to Jayen in a way he would understand and gave him the opportunity to get comfortable with some of the equipment. This gentleman brought in two different masks that would be used for anesthesia. In the past these masks have caused Jayen incredible agony. We have even tried putting smelly chapstick inside to make him want to put it over his mouth and nose, but every time they go to put it on him he refuses and turns into the Hulk. For some reason, this time, playing with the masks and putting them on mom and dad and picking out which one he wanted to use really helped.

Dr. Adelson, the neurosurgeon, came in right before surgery and asked if we had any questions. Once again I wanted to confirm that he wasn't going to have the same amount of swelling as the first surgery. Dr. Adelson told us that he was only going to make a little incision about the screw and recovery would be minimal. Jayen wouldn't be allowed to remove the bandage for three days and wouldn't be able to submerge his head underwater for two weeks. But otherwise would be fine within a couple hours of the surgery. Well, I liked that approach much better. That was more of what I had prepared for. What the heck was the previous heart attack for then? Ummm you might want to discuss your approach with your fellow!!!!!

The nurse came in and quickly whisked Jayen off to the operating room and sent us out to the waiting area. I couldn't sit there and wait. So we headed down to the cafeteria to grab something. While there we were able to meet up with a mommy I had met at Jayen's therapy center. Their daughter was there for some testing and they happened to run to the cafeteria for a quick second too. It was so nice to see her and her husband and share a quick hug and laugh. But it literally was a quick second because just a short time later we got a call from the nurse asking to meet the doctor in the consult room. We rushed back upstairs and waited for Dr. Adelson.

In the consult room, Dr. Adelson informed us that everything went well and Jayen would be in the recovery room shortly. He even told us that Jayen didn't fight the anesthesia mask at all! What a champ! Being able to play with it ahead of time really helped! Jayen has really become such an integral part of his own medical team. I need to remember to value his input and feelings more.
We had asked to keep the screw; for some crazy sentimental reason! The hospital was so nice and obliged, but their policy is that it had to go through a sterile processing first.
We met back up with Jayen in the recovery room and realized that while he was still under general anesthesia we should clip his toe nails. It is literally like trying to tie down a pissed off rattle snake if he knows what you are doing. There were no clippers on the recovery floor, but one super nice nurse ran to another floor and grabbed one for us. But Jayen was already waking from the anesthesia when she arrived back with the clippers. Matt did the best he could to clip away while I tried to soothe Jayen. Even while still half drugged the kid wanted nothing to do with his toe nails being clipped.
We eventually got through all ten toenails, but it came with lots of tears and screams. Jayen was rewarded with a clear pop. Which, at the time, I thought would be a reward. After a huge burp from the bubbles in the pop, I was rewarded with toes covered in pop filled vomit. The bubbles must have been too much for him because twice he decided that my sandals needed a little extra paint! We took the pop away and tried to just sit and wait patiently for the screw to come back from the cleaners. I was pretty jealous of dad and the amazing snuggles he was getting from our usually ever constant moving child. After nearly an hour, our screw arrived in a sealed container with Jayen's hospital information attached. We were ready to hit the road and head to our next appointment.

Yeah, mommy didn't want to take Jayen out of school another day, so I scheduled an appointment with our pediatrician for the same day just later in the morning. This appointment was just a formality to make sure Jayen could continue to get ABA services. We literally just had to show up and mention the word ABA and the doctor could put in the referral for us. What a joke! Well at least we could check that one off the list and not have to miss another day of school for it.

When we got home, Jayen was showered with hugs from sister and rewarded with a requested game of wii bowling. Whatever you want little man. I love you and am so proud of you!

Camping with the Mayberrys

We just had the most amazing Labor Day weekend with the Mayberry family! Matt and Christian have been planning this weekend for months. And I'm so glad they did! It was a weekend full of laughs, memories, bonfires, incredibly loud mariachi music, air horns, BB guns, makeshift swings, cards, peeing in the woods, and lots and lots of TAG!

first birthday invite

Jayen came home from school today with a little white envelope. I immediately knew what it was and was probably a little more excited than Jayen was. Jayen received his first invitation to a classmates birthday party. This is his second year of kindergarten, he had three years of preschool, but this is the first time he has been invited to a classmates birthday. I was so excited for him, but then started worrying about how we were going to make it work. The party was at the movie theater. Parents were allowed to stay (they even offered to pay for one parent to attend) but didn't have to. I think Jayen would have loved to go with his classmates to the movies, but we had our second game of buddy baseball, Dalan had server training for church, mom had to go to a parent meeting for CCD classes, and Jayen was scheduled to have ABA therapy until 1. There were too many things happening all at the same time. Hopefully there will be more to come. I love that Jayen has friends; friends that think of him as normal and want to be around him!