Tag 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.

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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 🙂

 

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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. 🙂

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Filed under School, Special Needs Child

Dear PPCD Teacher…

It is still hard for me to fathom the reality that Braxton is going to start school on Monday, but whether I like it or not (or am ready or not!) it’s happening.  I have been working this week to update Braxton’s Care Notebook and writing a new letter to his new PPCD (Preschool program for children with disabilities) teacher.  His Care Notebook has his medical history, information about his feeding, how to feed him, how to administer medication if he needs it, and what to do in case his g-tube comes out or other emergency.  I have also prepared a spare G-tube kit with instructions. (I will write another post later with a little more on these).  I’ve tried to prepare as much as possible for Braxton’s teacher and hopefully we haven’t missed anything! As we did last year, I’m going to share Braxton’s letter with you. If you read the previous letter, you will really see just how far Braxton has come in a year. This little boy is truly amazing!!

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Dear PPCD Teacher,

BraxtonThis handsome little boy is our son Braxton (or Brax as we sometimes like to call him). We are so excited to see him take on this next chapter of his journey and look forward to working with you this year! We’d like to give you a little introduction to Braxton as he begins this school year.

Braxton is 3 years old and currently has a diagnosis of Rubinstein-Taybi Syndrome (RTS). Don’t feel bad if you don’t know what this is, because it is pretty rare. Rubinstein-Taybi Syndrome is characterized by distinct facial features such as a beaked nose, almond-shaped eyes, small head and jaw, broad thumbs, and a smile that causes the eyes to slant and almost completely close. Children with RTS also have a variety of medical issues that can affect the heart, brain, and digestive system. Braxton is followed closely by many specialists and is currently medically stable. We just followed up with all of our specialists this summer and they are all pleased with his progress and have no significant concerns. Children with RTS also have significant developmental delays but do attain all gross motor skills. Fine motor and speech will be Braxton’s biggest challenges.

Regardless of his diagnosis, you will quickly see that Braxton is just like most of his 3 year old peers in so many ways. He loves to be on the move and play with his favorite toys. He is determined and will work hard to get his way. His receptive language skills are growing every day and you will begin to see his understanding after a short time. He understands the word “no,” but like most 3 year olds, he is not happy with being told ‘no’. He will pout, whine, cry, and if he’s feeling especially dramatic, he will throw himself backward. This is also how he tells us he does not like something (be it an activity, doesn’t like that we stopped an activity, or took something away from him.) He can easily be redirected to calm him down. If that does not work, you can pick him up and swing him a little bit and he will start to laugh. Occasionally, he will shake his head to mean ‘no’ in response to a question or activity. He does also understand a few short phrases like “It’s time to eat,” “come here,” “time to go bye-bye,” “all done,” and “let’s read a book.”

Right now, Braxton does not say any words. He communicates with us using non-verbal cues, some gestures, and vocalizations. We communicate with him using Total Communication, which includes talking to him, Sign Language, Picture Cards, and Augmentative Communication Programs. He has not picked up any sign language at this time, but he understands the idea of the picture cards and Augmentative Communication Programs. He will accurately choose a toy or an activity on his iPad when given 4 choices about 75% of the time right now. Picture Cards or AAC opportunities should be given during instructional time as often as possible. Some opportunities might include, during circle time to choose the correct day of the week, to choose a song/activity, during center time to choose a center, or outside to choose which apparatus he would like to play on. We will work with the district Assistive Technology teacher, our speech therapist, and you to find a program that will grow with Braxton to use as his voice as the year progresses.

Braxton is currently working very hard to walk independently and is very close to doing so. He will walk very well with us if we are holding his hand, and often he merely holds on by one finger. He is gaining confidence to walk short distances without assistance and this should be encouraged as much as possible. When walking, you must only hold one of his hands. The moment you hold both of Braxton’s hands, his legs magically turn into wet noodles and he crumbles to the ground. It’s really quite amazing. He crawls really well and likes to “walk” in a tall-kneel position. He is currently using a combination of crawling, kneeling, cruising and walking to get around his environment. With a little bit of work, we really believe Braxton will be walking on his own very soon.

Braxton is a very easy-going and happy little boy. He has a bright smile, an infections laugh, and he radiates so much joy. He LOVES music and lights. And he loves to listen to the different sounds things make when they hit the ground, so he will often pick toys up and drop them. His current favorite game is peek-a-boo. He initiates this game often by covering his eyes with his hands. If you say “Where’s Braxton?” he will uncover his eyes and wait for you to say “Peek-a-boo” and then he will give you the biggest smile and a high-five. He also loves windows and doors, so it would be good to not seat him directly next to a window or door because he will want to stand there. He is also very curious, so if he sees an open door, he is very likely to crawl out. Braxton also needs extra sensory input at times and will chew or hit his head to get that input. We redirect his chewing to something that is appropriate like a chewy tube or his pacifier. He will often chew on a plush toy so that he can focus on an activity in front of him. He does not head bang as often as he used to, but if he does, it should be redirected. He loves big movements like swinging, jumping and spinning. He loves being outside and feeling the breeze as he swings back on forth at the park.

Overall, Braxton is pretty easy to care for and is very interested in learning. With a little bit of time, his personality will begin to shine through and he’s sure to steal your heart. If you want to learn more about him, please feel free to ask us or browse his website at braxtonjoseph.com, where we regularly write about our journey and experiences. We strive to keep open communication with all of our teachers and providers, so please do not hesitate to contact us if you have any questions or issues. And please keep us updated on his progress; there is nothing too small! We are so glad to have you on Team Braxton and look forward to an incredible school year! Thank you for taking the time to read about Braxton and for your dedication to the PPCD program.

 

Thank you,

Vanessa and Joseph

 

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Filed under Family, Kids and Family, Life, Special Needs Child

Beginning Our Special Education Journey

Braxton has been enrolled in Early Childhood Intervention (ECI) services since he was discharged from NICU.  ECI has helped us to coordinate therapy and necessary interventions for Braxton.  Unfortunately, ECI only works with children until the age of 3.  Once a child turns 3, their local school district takes over and serves children through their Preschool Program for Children with Disabilities (PPCD) program.  I had no idea a 3 year old could be enrolled in public school!

As you can imagine, this new chapter in our journey has left us with a lot of learning to do and many questions.  For the first time in a couple years, I don’t know what to expect.  It’s actually a little frightening.  But, as usual, we are learning and adapting and Braxton is showing us the way. The transition in to school is different for every person, for every district, for every school. Here is just a little bit about our journey so far.

Transition Meeting

Braxton and Dad at our Transition Meeting

Braxton and Dad at our Transition Meeting

Back in March with met with the Special Education coordinator for our district and our ECI case manager for our “Transition Meeting.”  The Transition meeting is usually scheduled about 3-4 months before your child’s 3rd birthday.  At this meeting, we were able to discuss the process of transitioning from ECI into the PPCD system.  The coordinator explained the processes for the district and explained all of the different Special Education programs our district offers.  There are programs for children who only need a help with Speech, programs for Deaf/Hard of hearing children, programs for children with multiple disabilities, and a few others.  She wasn’t able to really tell us what placement Braxton would have until he had his initial evaluation. We were able to ask questions about the process and find out a little bit more about our next steps.  A lot of our questions could not fully be answered until after Braxton’s evaluations. The transition meeting was only to describe the process. They also sent me home with packets to fill out about Braxton’s skills and needs to bring to our parent interview.

 

Parent Interview & Child Observation

At the end of April, we went back to the Special Education Office in our District for Braxton’s evaluations.  Evaluations must take place within 30-days of the transition meeting.  The evaluation can look different for everyone, but it is usually a series of play based assessments and parent interviews.  Evaluators will “test” your child by playing with them and engaging them in activities to see where their skills are in each area. They will also speak with parents to get a better understanding of the child’s skills and needs.  For our evaluation, the team asked me to be the play facilitator.

Our team included the Special Education Coordinator, Licensed School Psychologist, Physical Therapist, Occupational Therapist, Speech Therapist, Assistive Technology Specialist, Auditory Impairment Specialist, Visual Impairment Specialist, and Orientation & Mobility Specialist.   I played with Braxton while each member of our team watched and took notes about how Braxton played, what skills he had, how he interacted with me, how he reacted to the new environment and new toys.

For us, the entire session was videotaped so the evaluators could go back and watch for things they might have missed.  As Braxton and I played, the team asked questions about Braxton’s medical history, current therapy programs and goals, and upcoming medical visits.  They asked to show them certain tasks to see if Braxton could complete them.  Things like manipulating a pop-up toy; pushing a button, flipping a switch, turning a knob, sliding a button to make a toy pop up and pushing it down to do it all over again.  These tasks show Braxton’s fine motor skills and are important in an educational setting.  We did things to show Braxton’s gross motor skills by having him crawl and walk and move around the room.  I set up Braxton’s iPad to show them how he is able to use it to make choices.  Braxton, much like any child being asked to do things, decided not to cooperate for some tasks. For instance, he refused to show them he could walk on his own.  He didn’t even want to walk holding our hand.  Thankfully, I had videos on my phone of him doing these things and was able to show them to the evaluators.  For children who do not do well in unfamiliar environments (and those who are stubborn 2-yr olds!), video evidence is excellent in helping the team see all of the things your child can do.  It helps with the planning and setting of goals.  The team then convened to meet and discuss their preliminary thoughts about placement, support, and additional information they needed privately.  They came back to discuss some of their observations, concerns and additional questions.  A few of the evaluators requested that we come back for a secondary evaluation so that they could test a few specific things they did not see in our play based assessment.    I was also given a few assessments to take home that delved further in to Braxton’s social and emotional state for evaluation.

Secondary Evaluations

The Visual Impairment Specialist, Orientation & Mobility Specialist, and Occupational Therapist each asked for us to return for a secondary evaluation.  Two weeks later, we returned at their request.  The Vision Teacher wanted to see more of Braxton’s visual tracking abilities and what his functional vision looked like.  Sitting in a classroom, Braxton would need visual support due to his eye abnormality and the Vision Specialist wanted to get a better idea of exactly what he would need.  The O&M specialist wanted to see if there were any concerns about moving in different environments and safety issues due to his vision impairment.  Sometimes kids with visual impairments have O&M issues such as stopping when tile meets carpet thinking the two surfaces are uneven, phantom steps when climbing stairs, and difficulty stabilizing gait on uneven surfaces (such as rock playground, backyard, etc). The Occupational Therapist wanted to see more of Braxton’s fine motor skills like his ability to turn pages in a book, use of a pincer grasp, use of selective pointing, and other skills we have been working on.  This evaluation was much shorter and everyone got what they needed.

Admission, Review and Dismissal (ARD) Meeting

So, the rest of the country calls this an Individualized Education Program (IEP) Meeting, but Texas calls it an Admission, Review and Dismissal (ARD) Meeting.  They do this because at this meeting, you are either admitting a student, reviewing a service plan, or dismissing a student from services.  The ARD must be scheduled before the child’s 3rd birthday. Since Braxton’s birthday is in the summer, his entire process had to start a little bit early so that it would all be completed before the end of the school year.  For students with birthdays in the middle of the year, they can actually start the day after their 3rd birthday, so right in the middle of the school year!

For Braxton’s ARD, only part of the evaluation team was present.  We had the Licensed School Psychologist/Early Childhood Specialist, Speech Therapist, Vision Impairment Specialist, Auditory Impairment Specialist, Orientation & Mobility Specialist, and our ECI coordinator.  ECI is usually present to make sure the transition is completed and so they can close out the file with ECI.  Each team member presented the results of their evaluations and gave their recommendations. I had a chance to ask questions about the reports and the recommendations being made. We discussed the therapies being recommended, how they would be implemented and the frequency with which they would be offered.  We also discussed Braxton’s official placement in a class and school.  Finally, we went over the goals each team member had in mind.

Overall, the meeting went well.  I had a few questions about the report which was provided to me the day before the meeting.  Last night, I went through the report with a highlighter and wrote down several questions about the recommendations, goals, and my concerns.  The team listened carefully to my concerns and answered all of my questions.  Initially, they recommended that Braxton be in the morning session, but I requested Braxton be in the afternoon class so that we could have his private therapies in the morning before school.  Afternoon spots are always a little bit harder to come by, so I wanted to accommodate their schedule as well.  I’m glad everyone was receptive to my questions and was pleased with the outcomes.

Recommendations/Placement/Plan

So, what did we decide and how did it all turn out? Well, we are going to enroll Braxton in school for the 2014-2015 school year.  I am sad to pull him out of his daycare, but I think this can be a successful program for him.

The ARD Committee recommended their PALS class that is offered at the same school Braxton’s sister attends.  The PALS class is intended for students who need help with pre-school academics, language, and social skills.  For our school district, this class is only 3 hours each day and Braxton will attend in the afternoon from 11 am to 2pm.

Braxton was recommended for all therapies offered in school.  He will have school based Physical Therapy and Occupational Therapy.  School therapy differs from private therapy in that the goal of school therapy is to help the child be successful and promote learning.  The school PT and OT will come in and work with the class as a group and help the teacher with seating, placement, equipment and incorporating goals in to the class curriculum.  They will only be working with Braxton 60 -75 minutes per 9-weeks.  I was told these are minimums and that the school therapists typically spent much more time than this in the classroom.  The school PT goal was that Braxton would be walking with an assistive device 75% on his own by this time next year.  This is the only goal that I disagreed with.  Unfortunately, the PT was not there, but my concern was put in writing and we will reconvene to address it.  I told the team that by this time next year, I wanted Braxton walking completely on his own.  The PT had recommended an assistive device for long distances such as walking to the lunch room, library, outside, etc, and while I can understand the need, I don’t want to encourage the use of a walker when Braxton is so close to walking independently.

Braxton also qualified for Speech on a more intensive basis. Speech will provided at 60 minutes each week, so he will have speech support almost daily.  His speech therapist will also work with the Assistive Technology specialist to implement a communication device system at school.  They are aware of what we have been using at home and so far have been supportive of continuing to use that system.

He will continue with Vision and Hearing therapy on a consult basis only.  This means the AI and VI teachers will come in to the class to ensure the teacher has the tools she needs to help Braxton learn in class.  The VI teacher recommended that Braxton use a visual schedule, picture cards, and use of a black background to help with visually complex items.  I also asked about the use of an FM system with Braxton’s hearing aids.  An FM system allows a receiver to be attached to Braxton’s hearing aids and the teacher would wear a microphone.  This would make it as though the teacher is speaking directly to Braxton and he would hear her the same way we hear music in headphones.  This is typically used in later grades, but I think it would be helpful for Braxton because he does get easily distracted and needs voices to be in short range to pay attention to them.  The team said they would trial an FM system, but wanted to see how he performed without one first.

The whole team agreed that “Total Communication” is best for Braxton.  Total Communication is the use of many different methods of communication to work with Braxton.  So, we will be using sign language, picture cards, AAC, voice, and gestures. This will help promote language and encourages the use of many systems so Braxton can decide which is best for him to communicate with his teachers.

It has been a long, arduous process, but I am, so far, pleased with the outcome and look forward to the fall session. We will be meeting again before school starts because we are waiting on a couple physician reports from our summer follow-ups and will need to take those reports in to consideration before school starts.  And to think, this is only the BEGINNING of our Special Education Journey.

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Filed under Family, Kids and Family, Life, Special Needs Child

Dear Teachers, Meet Our Son

Yesterday, we visited the new daycare Braxton will be attending, starting on Monday. I’ve been very sad about leaving our old daycare as Braxton has been there since he was 2 months old, but visiting the new one yesterday gave me so much to look forward to.

When we were walking to the office, one of his new teachers saw us and followed us in excitedly. She asked if this was Braxton and when we said yes, she was SOO excited to finally meet him. One of our therapists stopped by recently and filled her in on Braxton so she knew all about him. She even asked questions about the Care Notebook I left when I enrolled him. She assured me that she read it several times and even repeated some of it back to me word for word. Pretty impressive! Mom is sold. I know he will be very well taken care of here.

We visited the classroom and let Braxton explore a little bit to make sure he would be okay when we dropped him off on Monday. He took off right away straight to a window and played with some of the toys. His class is all boys who are full of energy and all over the place. I’m predicting he is going to pick up on wanting to walk just so he can keep up! I can’t wait to see his progress.

Before we left, his teachers also asked us to write some things down about what he likes and doesn’t like to help them out when he starts next week. I decided I would write a nice little introduction letter instead of simply listing things out. I also decided to share it with all of you as you get ready to send your little ones off to school. Feel free to modify this to introduce your little one to his/her new teacher as well!

And on Monday, join me on Facebook for a hold hands and cry it out session, as I’m sure I will be a mess! Are you sending little ones off to school, too? I’m sending big sister to 2nd grade and Braxton to a new daycare all on the same day…someone pass the tissue!

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Braxton Joseph <3

Braxton Joseph ❤

Dear Teachers,

This is the joy of our life, Braxton Joseph and he is 2 years old.  We have had so many wonderful people come in to our life and we’re so excited to be able to add you to that list.  While it would be near impossible to tell you everything about our son, we’d like to give you a little introduction and then let you have fun getting to know him all on your own!  I have to warn you, that it’s going to be hard NOT to fall in love with him.  He has that kind of effect on people. 😉 We strive to keep open communication with all of the teachers, therapists, and doctors in our lives, so if at any time you have any questions or issues, please don’t hesitate to ask!

First, our son, Braxton (or Brax as we sometimes like to call him), was recently diagnosed with Rubinstein-Taybi Syndrome (RTS) after quite the diagnostic journey.  Since RTS is one of the lesser known syndromes, here is a brief explanation.  Much like Down Syndrome, children with RTS all have very similar facial characteristics, medical issues and a variety of cognitive and developmental delays.  Children with RTS usually have a small head, beaked nose, broad thumbs, and a smile that lights up the room and causes their eyes to almost completely close and slant downward.  Medical issues vary for each child, but typically affect things like their heart, brain, and gastrointestinal system.  Braxton is monitored closely by many specialists, and at this time there is no major cause for concern.

Developmentally, these children will attain most of the major milestones, but usually just a little later than children of typical development.  Brax is about 10 – 11 months old developmentally, but we really expect to see that take off very soon.  He is crawling very well and can get across the room faster than you can turn around.  He is cruising a lot more these days and every once in a while gets brave enough to let go and transition between two surfaces.  His first steps are not far away, and I can guarantee when that happens he will be quite the handful, just like any other 2 year old boy! The biggest challenge for Braxton and his RTS family will be speech.  Many children are nonverbal, but they do learn to sign or use a communication device very well.  We are learning sign language and try to use it as much as we can around him.  He has not yet picked up any signs, but we know that the mere exposure will help him to learn in his own time.  When he is ready, our speech therapist will work on using communication devices, but right now we are just getting him familiar with an iPad, so he will use one in therapy often.    He does babble and make sounds, but there are no words just yet.  We are hopeful that Brax will have some language so we talk and sing to him often, which leads me to things he likes.

Braxton really enjoys music.  He will stop what he’s doing to listen when music is playing.  Dad can play a few instruments, so when Braxton starts to get a little fussy, dad will play a little piano or soft drum beat and Braxton will usually calm right down.  Brax really enjoys playing catch with his big sister or pretending to knock her over because he is so strong.  I’m sure he will love being around other kiddos his age.  He also needs some extra sensory input in the form of chewing and some head banging.  At this point, Brax will put EVERYTHING in to his mouth, except food! (More on that in a bit). We do try to discourage chewing on things that are inappropriate like tables, wood, and floor surfaces, but he always manages to find them.  Don’t feel bad if you don’t get to our little woodchuck right away and he’s gnawed at a table for a couple of minutes.  We also try to discourage his blatant head banging against the wall or door.  He will sometimes grab a toy and hit it against his chin or head, and as long as it’s not something that will hurt him, it’s usually okay.  He will only do it a few times and then toss it and chase after it. Prolonged head banging should be stopped and redirected. Braxton also LOVES windows and being outside.  He enjoys sitting at our patio door and staring outside.  When outside, he likes to feel the wind and look up at the sky.  Braxton has an infectious laugh and will sometimes amuse himself and laugh at picking up and dropping toys.  If you are having one of those days where you can’t seem to get out of a funk, tickle him right under his arm or play a game of peek-a-boo and his laugh is sure to cheer you up.  Oh, and he thinks diaper changes are hilarious. (Especially ones where he has a little surprise for you) Typical boy, huh?

Our little man has a pretty easy going attitude, and will usually go along with everything, but he will definitely let you know if he is unhappy.  He will start to cry or whine when something he likes is taken away or if he needs something like a diaper change or just to be loved on a little.  Like any normal 2 year old, he doesn’t like to be told “no,” but he does understand the word.  He will test you a little on it though, as expected.  He will pause for a moment and then try to go back to the activity he was supposed to stop, so sometimes he will need some redirection.  He also does not like very loud noises or high pitched voices/sounds.  At his last daycare, he would take his hearing aids out when all the babies started crying at the same time (smart kid, right!?).  If he hears a sound that startles him or that he doesn’t like, he will start to cry and it will take a moment to settle him down.  If you just pick him up, give him his pacifier, love on him, and let him know everything is ok he will calm down.  If not, it is okay to take his hearing aids out for a little while until the sound is gone or he calms down.

And that brings us to medical equipment.  Braxton has hearing aids and a G-Tube for feeding.  He is pretty good about keeping his hearing aids in and does not mess with them often, unless there is a sound he doesn’t like.  He should have them in all day at all times, unless as explained above there is an unpleasant sound and he cannot calm down.  There is no need to remove them during nap time.  He just recently really discovered his G-tube and extension and is just now starting to play with it or chew on the end.  We usually have him in a onesie so that he can’t get to the button and play with it and it also helps keep the extension tucked in to his shirt.  His extension can be removed between feedings if you are comfortable detaching and reattaching it when necessary; otherwise we just tuck it in.  I’ll have a detailed instruction guide to help with feedings, but I promise it’s very easy and you will learn quickly. We are working on getting Braxton to eat more by mouth, but he’s developed a severe oral aversion and his progress is very slow.  We encourage you to try feeding him by mouth, but ask you to take your cues from him.  Some days he will open his mouth right up and eat an ounce or more, and other days he might only take a few bites and push you away or fall asleep.  Just be patient with him and together we will get him to learn that eating is a wonderful thing!

Overall, Braxton is pretty easy to take care of and if you give him a little time, his personality will definitely come through and you will love him as much as we do.  If you want to learn more about him, please feel free to ask us or browse his website at braxtonjoseph.com, we write about everything and I’m sure you will also star in a few posts yourself, so be sure to check it out and definitely let me know if you don’t want your picture used or anything like that.  We are so looking forward to this next chapter and getting to know you all.  Thank you for taking the time to read about our son and for caring for our child and so many others.  You are appreciated more than you could ever know.

 

Thank you,

Vanessa and Joseph, Parents to the happiest little boy in the world 🙂

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Filed under Family, Kids and Family, Life, Special Needs Child