Category Archives: School

Welcome Back, Team Braxton!

The past few years, I have been writing a letter to introduce Braxton to his new daycare and elementary school teachers. This year, we are fortunate to have our same team of teachers and therapists, so instead of an introduction letter, I’ve written more of an update letter to let them all know how wonderful Braxton has done over the summer. I must add that we are SUPER lucky because his teachers also follow our blog and Facebook page, so they’ve gotten to see some pretty amazing things all summer! I really couldn’t have asked for a better team. Without further ado, this is the letter I am sending to our teachers and school therapists.

——————————————————-

Welcome Back, Team Braxton!

The Summer sure feels like it has flown by! I hope that you all had a wonderful, much deserved break. We are so excited for school to start again and look forward to another amazing year together. 🙂

Braxton has had a great summer of growth and excitement! One of the fun things we did this summer was go up to Dallas to meet up with other families with children who have Rubinstein-Taybi Syndrome. It was really incredible to meet other children and see where they are and what we have to look forward to in the future. We know that every child is different, but we have such high hopes for Braxton now and a little bit better idea of what we might expect and goals to add to our list. With your continued support, I know we will help Braxton reach his full potential.

I am writing this letter to you to update you all on the progress we’ve made over the summer, in lieu of calling a staffing or new ARD. I am, of course, more than happy to meet to further discuss or make any changes to our IEP, if necessary.

Gross Motor Skills

Braxton’s walking has gotten MUCH better over the summer. He is walking quite well independently, but does still require handheld assistance in new or busy environments to keep him going in the right direction. As you know, he is still fascinated by doors and windows and  will wander in that direction if not holding on to someone. He is also doing well going upstairs with standby assist, if there is a railing. Coming down he does need to hold on to someone if he needs to walk downstairs. He can scoot down all by himself though! I have also noticed that his endurance has increased and he can walk longer distances without taking a break. Braxton has also done pretty well on uneven surfaces (grass, gravel, rocks). We have been working on jumping on the trampoline and I have seen Braxton try to initiate jumping on flat surfaces.  He hasn’t come off the ground yet, but he bounces up and down. He has recently also started propelling himself forward on riding toys! Intense plasma car races are in the near future. 🙂 He also really enjoys playing catch and throwing a ball overhead. We’re working on kicking and he can do it as long as he has some help keeping his balance. Over the summer Braxton graduated to once weekly private physical therapy instead of twice a week.

 

Fine Motor Skills

Fine motor is still a work in progress, but we ARE seeing progress! Braxton can now build a block tower up to 3 blocks on his own with minimal tactile cues. He can build up to 6 if he has some help keeping the other blocks together. We have really been targeting that pincer grasp as well and he is doing better, but does still try to grasp using his whole hand. When we cue him to hold his fingers back, his pincer is beautiful. We have also worked on chunky block puzzles and he is doing better with taking the pieces out and putting them back in to their correct place. Occupational therapy is still twice a week and we will also be starting Hippotherapy back up in September.

Speech and Communication

This is where things have been REALLY exciting for us this summer!! Braxton is doing so well with the full size iPad and Speak for Yourself. He is making 2-3 word utterances without assistance. His favorite thing right now is to ask for hugs and kisses. He very deliberately will say “Want hugs” or “want kisses” and expectantly turn to you for his hug or kiss. He also says “Give ___” where the blank is filled in with a toy he would like. The other day he also said “you, you, you, my, my, my, food.” after he threw his spoon, which I took to mean that he wanted me to feed him. Sure enough, he ate just fine after that. He also said “sleep, sleep, sleep” repeatedly just before climbing in to my lap and falling asleep. I’ve learned that when he appears to be stimming or fixated on a word, he is often actually trying to tell you something so you may need to help guide his hand to find what he wants to say. We are so excited to see his progress and have been actively trying to incorporate the use of the talker more in to his daily routine to express wants/needs, feelings, schedules, etc. Modeling is extremely important in helping him to interact with his peers and be an active participant in class, so I hope that we will be able to use it more throughout the school day.

Aside from using the talker, Braxton seems to be learning other ways of getting our attention and communicating with us instead of just whining or crying. He climbed in to the bathtub to ask for a bath, he pulled food out of the pantry and brought it to me (instead of just sitting in his chair and crying), and he’s taken my hand and led me to toy he wants.

He also seems to be understanding more and following directions better. I can call Braxton from another room when it is time to change or eat and he will come when I call him. He understands what it means when I say it’s time to go somewhere and goes straight to the front door and gets excited. He also gets a little upset when we don’t leave right away. (We’re still working on that patience thing).

Feeding and G-Tube

Braxton can now feed himself!!  He is able to hold the spoon, scoop his food, bring the spoon to his mouth, and back to the bowl. He does need help when it comes to the last bit of food and scraping the bottom of the bowl. Also, a word of caution! He does still want you nearby. If we leave he gets upset and will throw his spoon or the whole bowl of food. He also likes to throw his spoon when he doesn’t want to feed himself, but instead wants YOU to feed him. So, I’d try to stay out of the line of fire, so to speak. 😉 He does still need his G-tube for liquids, so be sure to give him 2-4 ounces of water after lunch and/or after you come in from outside since it is still so hot out there. He has recently started making a sound like he is clearing his throat and we’re seeing multiple swallows, but he is eating normally and our therapists/doctors are not seeing anything to indicate that we need to stop oral feeds. We have a swallow study scheduled for the first week of school to be sure there are no changes.

Hearing and Vision

Braxton’s ear had some fluid build up in June and his right ear tube started leaking. After a couple weeks his ear tube came out but the drainage did not stop. We visited with the ENT who removed the other tube since it was out of the ear drum and just sitting in the canal. Since the right ear had been draining almost 3 weeks, the ENT cultured the ear and it turned out to have been a staph infection. We started some new ear drops, but within a week of finishing the drops the draining started again. After a trip to the doctor we learned his left ear was now infected and the right ear still had fluid. We began an oral antibiotic and resumed drops in the right ear. He seems to have cleared up, but we have not yet followed up to be sure. As a result of all of this, Braxton has not worn his hearing aids in over a month. 😦 He seems to be hearing well enough to understand and respond to directions and his communication device.

For vision, we did follow up with our ophthalmologist this summer and she said his vision still appears to be normal and again confirmed the CVI diagnosis. We have been working on identifying colors over the summer and he consistently finds the requested color when asked about 80% of the time. Sometimes when we hold up two blocks and ask him to pick a specific color, he looks right at it and grabs the other block while laughing or smiling, so we know he knows the colors and is playing with us. Our communication program also recently had an update that allows us to change the colors of background on the buttons as well as, the “desktop” screen. Instead of the black background, we can now change it to another color. I haven’t tried to change that yet to see if it helps with him finding his words, but it is an option we have now.

 

I’m sure there is something  I am missing, but I think I hit all the highlights. Overall, Braxton is making progress by leaps and bounds right now! It such an exciting time for us to see Braxton’s personality continue to emerge and be able to see him show us what he knows and comprehends. We’re really looking forward to this year working with all of you again and can’t wait to see what new things Braxton will learn. Thank you all so much for the work you do and the continued support you have given Braxton and our family. We really couldn’t ask for a better team! Please feel free to contact me if you have any questions or if there is anything you would like to discuss further.

 

All the best,

Braxton and his parents 🙂

 

Leave a comment

Filed under Kids and Family, School, Special Needs Child

Braxton Goes to School

Friends, I can hardly believe the words in front of my face: Braxton has been in SCHOOL for TWO MONTHS! 50 days…approximately. (Not that I’m counting or anything). We have had an incredibly amazing start to our special education journey. It’s no secret that I was VERY worried about putting Braxton in to school and scared that he would regress because he was no longer in a full time program. I’m happy to report that I was VERY wrong. The journey is different for everyone, but so far, ours has been a success.

First Day of School

Braxton and Aileen(Don’t worry, I promise not to do all fifty individually, it’s just logical to start at the beginning). I was an absolute MESS the first day of school. We attended “Meet the Teacher” night the week before and I felt some of the tension release when I finally met Braxton’s teacher. She seemed very nice and caring and despite the million questions I had, she never once rushed me away or made me feel like my questions were unimportant. She also mentioned that she had spent some time reading our blog and getting to know Braxton. Imagine my surprise! I can’t even get a doctor to read Braxton’s chart before they walk in the room for a scheduled appointment. But that’s another story for another time. Braxton explored the classroom without hesitation and we dropped off his school supplies.

The teacher asked me to come in before school started to talk about Braxton’s feeding routine and wanted to make sure they were prepared. When I arrived, I learned that the Speech Therapist had given them a crash course on Blenderized Diet and how to puree food, so the teacher’s thought THEY would have to blend his food for him! I’m sure there was a collective sigh of relief when I let them know I would provide Braxton’s food already prepared daily. They were able to watch Braxton eat and I gave them some tips and talked about some of the things we watch for when he’s eating. I was a little worried that a new place and new people might make Braxton a little anxious and make him not want to eat the first day, so I asked if I could at least stay that first day through lunch to help mitigate any issues.

First Day of School!

First Day of School!

Despite having attended the back-to-school night and meeting the teacher a few days later, I was still quite scared for his first day. I don’t think there is anything quite heartbreaking and exciting for a parent as sending a child to school for the first time. I dressed Braxton in some new “big boy” clothes, prepared his lunch, and put everything in his cute little backpack. I felt the tears well up. When we got to school, I walked Braxton to class and got to sit through their welcome routine. To my surprise, Braxton sat still on the carpet with his class and paid attention to his teacher as they sang and welcomed everyone to school. When I sat in on the class last year, I remember thinking “yea, there is NO way Braxton is going to sit for all of this.” Well, he sure showed me! (As he often does). The classroom aide was wonderful with Braxton and his other classmate who is not very mobile. She helped them clap and move and stand, and it was just awesome to see. We went to lunch, and Braxton decided that he did not want to walk so we had to carry him. At this point, we discussed the use of a wagon at school for long distances. I was pretty adamant that I did not want Braxton using a walker, but I was okay with a wagon as long as they did try to walk with him first. When we got to the cafeteria, I let the teacher feed him so that I could see if he would have any anxiety about the noise in the cafeteria and a new person feeding him. Braxton had gotten used to different people feeding him in daycare, BUT he would get upset if someone started feeding him and then  a new person came in mid-feeding. I was also worried all the new people and sounds would keep him from wanting to eat. Again, he made mom look a liar! He ate like a champ. The school speech therapist was also present to evaluate his eating and make sure they took all the necessary precautions. Everyone was on board and pleased with Braxton’s eating skills. It’s amazing how far he’s come. If you spent any time with him now, you would NEVER guess that there was ever a time when I couldn’t even get the spoon near his mouth. I left the school confident that Braxton was in good hands, but I did cry on the way home.

The first few days were a little bit tough on me, but Braxton did wonderfully. The teachers reported that he was doing well for them in class and adjusting to the routine quite nicely. He was also eating quite well for them at lunch. Braxton relied on the wagon quite a bit in the beginning, but the teachers assured me they were walking with him in class a little more each day. I was confident that Braxton would adjust to the schedule and slowly be more tolerant of walking a little bit further every day. When we met for our first ARD in June, I asked that we have a new one when school started so that I could meet the therapists who would be working with him and also provide updates because I knew he would grow so much over the summer. We also had to adjust his IEP to allow for the school to feed him based on the recommendations of his doctor and a Modified Barium Swallow Study that told them it was safe for him to eat by mouth and bypass his g-tube. After the first week, I contacted his teacher to go ahead and schedule the ARD.

Back to School ARD (IEP Meeting)

For Braxton’s first ARD of the school year his teacher, school PT/OT/ST, Assistive Technology Rep, Hearing and Vision teachers  and ARD facilitator were present. I provided the committee with a copy of a report I had typed up for Braxton’s pediatrician. We had spent the summer visiting all of Braxton’s specialists and getting updates on his health and seeing tremendous growth from Braxton as well, so I wanted to be sure everyone had the most current information about him. I talked to them a little bit about the new things we were seeing like his endurance for walking longer distance with moderate assistance, babbling and vocalizations, and of course eating like there was no tomorrow. We reviewed Braxton’s goals and I told them a little bit more about my goals for him at the end of the school year. My two biggest concerns were communication and mobility. I wanted Braxton to start using a communication device from home and I wanted him to walk independently without the use of a walker because he was already very close to doing so. The school speech therapist and assistive technology rep both said they wanted to talk with me further about an AT evaluation, and we decided to set that up separately from the ARD. It was a short, sweet, and productive meeting for everyone and after all the horror stories I’ve heard, it was nice to leave the meeting with a sense that everyone was aboard “Team Braxton.”

I went next door with the speech therapist and AT rep to discuss communication options. Braxton’s teacher popped in as well and was very interested in learning more about our plans for Braxton. I was beyond thrilled when I learned that our district would provide Braxton with ANY communication device/program necessary until he graduated from the district! I was flabbergasted. I’ve talked to SO many parents who have fought tooth and nail to get the district on board with bringing a device FROM HOME, that it was nice to hear them say they would provide what he needed and we would be able to take it home daily and over the school breaks. We talked about different iPad programs and options and the ST and AT told me they would begin evaluations with Braxton’s the next week. Braxton’s teacher was also quite excited to start working with a device with Braxton, so again, it was such a huge relief to have everyone on board and not have to put up a fight for anything at all.

Adjusting to School

School is exhausting!

School is exhausting!

After the ARD, things seemed to continue going well. As Braxton adjusted to his new schedule, he was coming home quite exhausted! Over the summer, he didn’t really nap a whole lot, so it seemed as though he was growing out of the need for a daily nap. He slept for an hour at most each day. Once school started, he had therapy every morning and then school from 11 am to 2pm. When he got home at 2 pm, he fell asleep almost immediately and slept 2-3 hours every day!! He’s adjusted quite well now and doesn’t fall asleep until bedtime. Sometimes, we will put him down around 4 pm because he starts to get a little cranky.

Color time!

Color time!

Within a couple of weeks, I started to notice Braxton making some changes at home. He was standing a lot more and walking between us and cruising all over the house. We put a crayon in Braxton’s hand and he colored for the first time ever! The teachers continued to tell us that Braxton was making progress and doing well in school. They told me that he was starting to walk more for them as well once he got used to the schedule. Our school is really great about having family events and getting everyone involved, so I really saw his progress when we attended these events. He walked from the parking lot in to the school and around the school with no problem, colored, played, and smiled the entire time. His teachers fell in love with him pretty quickly and vice versa. There have been mornings where Braxton is very cranky and won’t cooperate with me at all, but the second we pull in to the school parking lot I hear him laughing and babbling in the back seat. As I get him out of the car, his little hands go up in the air and his whole body begins to shake as a huge smile comes across his face. I can tell that he is excited. He walks with me over to his teachers and his face just lights up. He walks to his aide and gives her a big hug every single morning. And his teachers are always happy to see the kiddos. They greet everyone and acknowledge the kids and always seem to genuinely be in a good mood. I know that Braxton is in really good hands and his teachers have a sincere vested interest in the kids’ success.

Braxton walking with his teacher and classroom aide.

Braxton walking with his teacher and classroom aide.

Now, two months in to school Braxton is transforming right before our eyes. He is closer than ever before to walking independently. He will now walk by himself at home and in the classroom. He walks from the living room over to the playroom, or just from his feeding chair over to a nearby toy. He’s even stood up in the middle of the floor and kept walking completely on his own. It’s mind-boggling to look up and just see Braxton walking right by me to get to a toy in the other room. It’s been a long hard road, but it’s paying off BIG! Braxton’s gross motor skills are taking off. His fine motor still needs a lot of work, but we’re seeing progress. He is starting to babble and vocalize much more as well, which is certainly promising for us. I truly feel that we will have a verbal breakthrough soon and Braxton will have some speech. I know that using his communication device is going to help his language develop as well, so I’m really excited to see how he does. I will write more on our AAC journey as well. (Soon! I promise!!) Lots of exciting things happening there!

Overall, I have been quite pleased with our start to school. It’s still hard to believe that our little guy is actually in school, but it has been wonderful for everyone. He attends Aileen’s elementary school, and she is elated that he goes to the same school as she does. She is SO proud of him and having him in school has even helped her! She worked out an incentive with her teacher and Braxton’s teacher that allows her to go in to his class and read to them every so often. She loves being able to go in to class with him and I’m sure Braxton likes seeing her as well.  I love that everyone is working together for Braxton and am so glad to see him flourishing. My sweet boy is growing every single day and we are full of so much hope for the future.

Here are some other great photos from his first couple of months at school. There are also a lot more over on Facebook page, so hop over there and give us a “like.” You know you could use a little bit more Braxton in your life. 🙂

2 Comments

Filed under School, Special Needs Child