Tag Archives: back to school

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

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