4th Tubie-versary!

Every year, it is hard to think about Braxton’s birth and how long he was in the hospital. In the grand scheme of things, he wasn’t in there very long, but every year the weeks roll by and I realize how much LIFE has happened in 3 weeks and remember just how long it felt then and still feels now. A lot can happen in 3 weeks. Four years ago today would mark 2 weeks that Braxton was in the hospital and it is also the day he had his first surgery to have his G-tube placed.

Seeing Braxton for the first time after surgery.

Seeing Braxton for the first time after surgery.

The day Braxton became a Super Tubie is seared into my mind and every year I see just how much progress has been made. Braxton’s tube was placed because he was aspirating liquid into his lungs and he had extremely poor muscle control. He also had trouble coordinating the suck-swallow-breathe reflex. Drinking meant he forgot to breathe and breathing meant he didn’t drink, or if he breathed while swallowing the liquid ended up in his lungs instead.

The day the G-tube was placed, we were terrified. I remember feeling helpless. I remember arriving to the NICU early so that I could hold him and tell him he was going to be okay (even if I wasn’t completely sure myself), only to be told that I wasn’t allowed to hold him because the anesthesia process had already begun. They wanted him tired and calm. The nurse told me I couldn’t stroke his head or hand. Only firm touches. We stayed with him until he was rolled away and couldn’t follow. I sat in the waiting room putting on a brave face as the fear and tears built up inside. The doctor came up and told us he did great and we would see him soon. The whole procedure was maybe 30 minutes, but it felt like so much longer. Everything in the beginning felt like forever. We finally went back and saw Braxton swaddled up tight and the crash course began.

Four years later, I wish I could go back to myself and let myself know that everything was truly going to be okay.

Anyone who meets Braxton now, would never know there was ever a time that Braxton wouldn’t or couldn’t eat. He eats about 16-20 ounces in less than 10 minutes! For comparison, it used to take 20 minutes to get him to eat 2-4 ounces. The process was v-e-r-y slow, but we stuck with it and our speech therapist helped us through it. Braxton will pretty much eat anything as long as it is pureed. Scratch that, he will eat any of the pre-packaged baby foods. I’ve offered pureed table food like beans and mashed potatoes and he is NOT a fan!

We are working on food chaining again which is how we got him to eat different baby foods. I am trying to add in a little bit of pureed table foods into his meals so that he is used to new tastes and new textures. He can always tell when there is something different about his food. His body tenses up, he shakes his arm and head, and makes a face like he’s just been betrayed. It’s actually really cute. He will get there eventually, and we will keep on working with him.

For now, we only use Braxton’s G-tube for liquids since he still cannot drink on his own. We have been successful in getting him to take a few sips from a straw and an open cup, but he’s not too consistent just yet. He get lots of water and milk via g-tube to keep him hydrated.

Sometimes it is hard for me to look back and sort through the emotions from the early days, but when it comes to his tube I laugh at myself a little because we were so scared for no reason at all. The tube was the absolute best decision we ever made. Braxton has thrived and grown so much. He is doing incredibly well now and hitting milestones left and right. Something that might not have happened if he didn’t have his G-tube.

Another year with the tube, and we aren’t a whole lot closer to having it removed. And we’re okay with that! It’s no longer scary (minus the occasional pulling out of the tube – that is still scary no matter what) or different. We use it in public without shame. We don’t try to hide it anymore. It’s just a normal part of our life. Once he starts drinking on his own and maintaining his weight, we can have that discussion, but for now it will still be a part of him.

I’m so grateful for modern medicine and Braxton’s G-tube! He wears it proudly. :) Happy Tubie-versary, Braxton!!

Braxton, the Super tubie. Strutting his tube proudly. (Photo by Grease Man Photography)

Braxton, the Super tubie. Strutting his tube proudly. (Photo by Grease Man Photography)

1 Comment

Filed under Kids and Family, Life, Special Needs Child

Finding Braxton’s Voice: Our AAC Journey

Braxton has Rubinstein-Taybi Syndrome (RTS).  RTS is a rare condition that affects multiple systems and has distinct facial characteristics. Individuals have mild to moderate intellectual disabilities. For Braxton, RTS affects his brain, heart, hearing, digestive system, and overall development. He just turned 4 years old and is developmentally closer to about 15-18 months old. Like many individuals with Rubinstein-Taybi Syndrome, Braxton does not have verbal speech. We did not know about Braxton’s RTS diagnosis until he was 2 years old, but even before that, we knew he would have trouble with communication.

Braxton Wearing his Hearing Aids

Braxton with his hearing Aids on. They are very small and hardly noticeable

He passed a newborn hearing screen, but at 9 months old we saw an Ear, Nose and Throat (ENT) specialist due to persistent ear infections. At that time, Braxton failed a booth hearing test so the doctor recommended a sedated hearing test. Just before Braxton was a year old we learned about the hearing loss and by 15 months old, he was fitted with hearing aids. He was diagnosed with mild to moderate mixed bilateral hearing loss. We hoped the hearing aids would bring his hearing to within normal range and help with speech development.

Communication is one of the very basic human needs and we very quickly realized that we would now have to find other ways to communicate with our son due to the hearing loss. That is exactly what Augmentative and Alternative Communication (AAC) is: any form of communication other than oral speech used to express various thoughts, wants, needs, and ideas. There are low tech forms of AAC (i.e., Picture cards, sign language) and high tech forms of AAC (i.e., dedicated speech devices, iPads using communication programs, eye gaze systems, etc).

This is our journey from low tech to high tech.

Our journey, is just one of many.

There is no one-size-fits-all system of communication for any child. I share our story just to offer another perspective of a family desperately trying to help their child find a voice to communicate their basic wants and needs. And also to share tips, resources, and things I wish I had known earlier.

Low Tech AAC

Sign Language 

We were very fortunate to have our local Early Childhood Intervention (ECI) state service plugged in early on. Once we learned about the hearing loss, our ECI coordinator helped us get in touch with our local school district to provide services. A teacher for the Auditorily Impaired (AI) came to our house once a week to help us learn basic sign language and how to adjust to having a hearing impaired child. Our AI teacher let us know about sign language classes being provided by our school district. The classes were for parents and professionals. We signed up right away with high hopes. We began learning Signed Exact English (SEE) with other parents and school teachers. I have to digress here to say just how awesome it was to see the teachers in this class who attended (without extra pay) to learn how to better communicate with their students. They were enthusiastic and very interested in learning and preparing their lesson plans. I was thrilled to see that these were the type of educators who would be working with my son when he went to school. I know this is not the case in a lot of districts, but I want parents to know these teachers ARE out there. But, that’s a story for another time.

We were fervent in our attempts to learn different signs and practiced regularly. Even big sister joined us in our learning and caught on quickly! To our dismay, Braxton blankly stared at us as we talked and signed to him. When introducing any form of communication, best practice says to start with things that are highly motivating (favorite toys, food, people, activities) – we tried, but there was no response. We didn’t give up right away, but OUR motivation to learn fizzled out when we realized Braxton had no interest. We continued learning and still sign today and Braxton is exposed to sign language at school as well.


Here is Aileen showing the signs she learned to introduce herself and her brother.

 

 

About 4 months ago (about 3 years after we first signed up for the SEE class), Braxton started signing “all done.” He very purposefully told us when he was done with an activity. Not too long after that, he began signing “more.” My interest in learning and teaching him sign language has sparked once again and we will keep trying to increase the ways he can communicate.

 

Picture Cards

There is an entire system based on the use of picture cards called the Picture Exchange Communication System (PECS), but what we used was a rough version of that system. Our AI teacher helped us create photos of some of Braxton’s favorite items. One of our initial goals with the picture cards was to help Braxton understand that the picture represented the real thing. We would show him the picture and item side-by-side. We then showed him how to touch the picture. When he touched the picture, we immediately presented the item so he could learn that if he wanted to “select” the item he had to touch the picture. We moved on gradually to presenting him with two pictures and having him select the one he wanted. We took pictures of various toys, people (mom, dad, sister, therapists), and activities (food, bath, sleeping).

Here is a picture of a stuffed toy Braxton was very fond of when we introduced this system.

Here is a picture of a stuffed toy Braxton was very fond of when we introduced this system.

It took some time, but Braxton did eventually learn that the pictures helped him get what he wanted. He began to select his preferred choice more and more often which helped us move to a beginning “high tech” solution.

We also introduced a picture schedule in this manner. We selected 4 key activities in his day to be represented. We had a folder which held the various parts and on the outside was a velcro strip. We took out the current activity and stuck it to the front of the folder. We worked on having Braxton select the activity so he could learn his daily schedule, this would be important for him when he finally entered school. We used a photo of him eating to indicate meal time, a photo of him in his car seat to indicate that it was time to go somewhere, a photo of him bathing to indicate bath time, and a photo of him sleeping to indicate bedtime. He was not too interested, but we did use the schedule for quite a while.

 

Moving to iPad Apps & High-tech AAC

Sounding Board

Click to buy in iTunes

Click to buy in iTunes

One of the first communication apps we used was called Sounding Board. Sounding Board is a FREE app that allows you to create your own communication boards with up to 20 options. It also comes with pre-loaded boards that can be used as well.

We used Sounding Board in a very similar manner to the picture cards. We started using the app when Braxton was around 18 months old. We started with two options when we introduced the app to Braxton. One choice was a toy that he really liked, and the other was one he didn’t really care for. We presented the app to him and sure enough, he reached out for the item he really liked. We immediately responded by given him the item he had selected. The key here was that immediate response so he began to associate the selection with getting what he requested. When he seemed to get that down, we changed to two items that he really liked. We also gradually increased his wait time so that he learned he might not always get what he wanted immediately. I personally liked that the app allowed us to use real pictures instead of just symbols. We did gradually move to symbols to help him prepare for a communication system. For example, we took a picture of a car he really liked and later we were able to replace that real car with a generic symbol of a car and Braxton understood that it still meant the car he wanted to play with.

After a few weeks of success with two choices, we moved up to 3 and then 4 choices. One of the biggest problems for us was Braxton’s accuracy. He used his whole hand to activate buttons on the iPad. He would often let his whole hand rest on the screen and accidentally select other pictures. This was one of the biggest reasons we felt like he wasn’t able to move up to a more robust communication system. (We know now that we could have introduced a robust system earlier with a variety of techniques, but more on that later.)

Overall, Sounding Board was a great stepping stone introduction into the high tech AAC world for us. We still use it today when we want to make a quick board for our environment (playground, favorite apps, current activities) – it can be used on an iPhone so it is very convenient when needed quickly. I personally feel that It isn’t really ideal for a complete communication system because you would have to create your own boards for every situation and then scroll through all of the boards when trying to say something.

Here are some sample screenshots from the app:

 

Our brief Introduction to Speak for Yourself

Click to buy on iTunes

Click to buy on iTunes

After using Sounding Board for a while and doing further research, I really felt like Braxton was ready for something more, but with so many apps on the market I had no idea where to begin. By this time, I was following the blog of another mom with an Undiagnosed child also navigating the AAC waters. I admired her writing and her advocacy and loved how much she believed in her daughter and fought the system when necessary. Dana Nieder introduced me to Speak for Yourself. I had seen videos of her daughter, Maya, using the app and read posts about the success she was having and I remember repeatedly thinking, “Man, I wish Braxton could do that.” She wrote a post about why she felt Speak for Yourself was the best Communication App on the market. I was sold. But, 1. the app cost $200 2. We kept hearing that Braxton ‘wasn’t ready.’ 3. I truly believed he wasn’t ready because his fine motor skills were just too poor. I continued to follow their journey, but was reluctant to take that jump.

The app went on sale for 50% off for Undiagnosed Children’s Day and I just knew we had to have it. I convinced Joseph (and myself) that this is what we needed for Braxton and we purchased it in April of 2014. I played with the app and even joined the Facebook user group to talk to other parents using the app. But, I admit I had no idea where to start and was just overwhelmed. Our speech therapist wasn’t totally on board with this particular app just yet. She was definitely on board with AAC, but she wasn’t familiar with SFY and even though she knew of many other apps, she wasn’t quite sure which was the best fit for Braxton. So, I began the navigation on my own. I introduced the app to Braxton with only a few words open on the screen and focused on things like “more,” “eat,” and “want.” Again, best practice says to start with the highly motivating activities. So, we used it during meal times. Braxton was not interested in telling me he wanted more food, he simply opened his mouth and moved toward the spoon. I felt defeated.

We used the app off and on on our own, but without guidance it kind of fell by the wayside.

When we met with our school district for Braxton’s initial evaluation in May, I showed the evaluators how we were using Sounding Board and had introduced Speak for Yourself. They supported the idea that Braxton was not ready for SFY and even told me the app was no longer available. Regrettably, I allowed that to be the nail in the coffin.

 

Springboard

When Braxton started school, we were told he would be evaluated to see what AAC system would be a good fit for him. I was hopeful that we would find an app on the iPad that we could use at home and practice with him. When we met with the evaluators, they expressed some of the same concerns we had already faced: his fine motor ability made it really difficult for him to be successful with an iPad app because of the small size of the icons. They were also concerned that the volume of the apps were too low for him to be heard in a noisy classroom. They recommended starting with a Springboard. I was excited to have them on board our AAC journey, but disappointed that this is what they recommended. I decided to give it an actual shot and we were allowed to take the device home each day and practice. I was surprised to see that Braxton was in fact interested and showed promise.

After trying the device for a few weeks, I couldn’t shake the feeling that this was inadequate.  I felt like the device was heavy and not enough for him. I just knew that he was capable of more. The school therapist herself told us that the device was programmed with up to a 5 year old vocabulary. The icons were a bit larger than the SFY app and the school also provided a key guard which helped with Braxton’s accuracy.

Ultimately, I decided that I really wanted to make SFY work for us. I visited Dana’s blog again and this post made me realize that if this is what we wanted, we had to do this on our own. I spoke to our private speech therapist a little bit more and she was on board with helping us learn to use SFY. We tried it on our own for a few weeks before I went in and  spoke with the school therapist and technology professional to express my concerns. 1. I was worried that this system would not be able to grow with him. If it only had up to a 5 year old vocabulary, Braxton would only be able to use it a couple of years. I knew that cognitively he might not reach a 5 year old level for a while, but to me, that didn’t mean that I should hold him back. I still wanted him to have access to the vocabulary his peers would have regardless of where he was cognitively. 2. If he only used this for a couple years, that meant he would have to change and learn a whole new system with a bigger vocabulary. I felt like we would waste time having to learn a new system. That it would set back any progress we made. At the end of the meeting, we decided that we would try Speak For Yourself (October 2014). We would send our iPad mini to school each day and they would use that for communication purposes. Our private speech therapist was on board and excited to help us navigate the AAC waters.

 

Back to Speak for Yourself (for good) :) 

One of the “roadblocks” we faced was the evaluators telling us that Braxton wasn’t ready because he lacked the accuracy to target the very small icons. I remembered a genius idea I saw on Dana’s blog (are you noticing a trend here? Please see Dana’s blog for some truly excellent advice on AAC) about her using a glove to help her daughter with targeting and accuracy. We used it for Braxton and it worked like a charm! You take any old glove and cut off the index finger of the glove. An iPad only works when it is touched by your warm finger. If anything is blocking it (like a glove) it won’t work. The idea was that Braxton would learn that the device would only talk when he used his pointer finger. This also helped when he couldn’t tuck his fingers in so that he wasn’t accidentally hitting other buttons. To my surprise (and delight) he caught on very quickly. We also used the glove when Braxton was using other apps to really get him to understand how to use his pointer finger.

Here is Braxton with the glove telling me that he wants more food.

Here is Braxton with the glove telling me that he wants more food.

Within a few weeks of using the glove, Braxton didn’t need it anymore. I used my hand to prompt him to remind him to tuck his fingers and guided his hand from his wrist. I began to realize that Braxton was learning to press the buttons on his own and even moving his hand to what he wanted to say. One of the major tenets of the app is motor planning.

Motor planning is something we all use daily, disabled or not. Can you type without looking down at the keyboard? Can you deal cards for a poker game? Do you have a certain place in the kitchen for plates, utensils, dishes? Ever wonder how you did something or got somewhere without ever realizing it? That’s all motor planning. Once we learn a routine, we are able to do it without even thinking about it. This is very important to AAC users and an important piece to being able to use an app like this. The user depends on the location of the icon more than the category or any other organizational piece. Braxton began learning that to say “eat” he had to double tap. He began moving his hand from one area of the screen to the next word all on his own.

The app allows you to “hide” certain buttons and only leave “open” a few or many. We started slow with some key words open that would still allow Braxton to make complete requests. “Want eat,” “want read,” “more food,” etc. Starting with a few words made it all a little less overwhelming for me and for Braxton. We opened words that had to do with what he was learning in school so he could participate with his classmates. We also opened other words as we realized they were needed.

We made slow progress throughout the school year, but we made progress.

In January of 2015, I feel like everything started to come together. Braxton got a trampoline for Christmas. He loved it. He became obsessed with it. I opened the word on the talker and showed it to him. He began requesting the trampoline! He was doing really well using the app to tell me he wanted more food and I would give him another bite. One day during his meal he found the trampoline button. I promised it to him after we were done eating. As soon as we were done, he asked for the trampoline again and we took him over to it and at that moment I truly think he realized the power he had to tell us what he wanted.

 

I want the trampoline!

I want the trampoline!

We continued using his talker during very specific activities. Braxton learned how to ask for different toys and when he was done with a toy, he reached out for the talker to choose a different one. It was clear to us that he knew and understood the purpose.

By the end of the school year, I met with the speech therapist and the technology professional during Braxton’s final ARD. They recommended that we continue using Speak For Yourself, but move up to a full size iPad instead of the iPad mini. They allowed us to take it home over the summer, and boy, have we made some progress!! We are using the talker more and more throughout the day and I always make sure it is accessible even when not in use. It might be sitting on the coffee table in the living room or the couch. When Braxton needs it or just wants to explore he finds it.

Here he is on May 29th (just before school ended and only one week with the full size iPad vs. the mini) – Braxton was all about hugs and kisses during our speech session, so we decided to make him ask for them! He caught on immediately! I guided his hand, but slowly removed my support and you can see that he very purposefully sought out the buttons and asked for hugs and kisses.

 

One month later, Braxton is still all about the hugs and kisses, but he is also using the app more and more. I leave his iPad out for him and he can walk up to it while it is off, turn it on and start talking to me. He will request toys, but mostly he asks for hugs and kisses. Most importantly, he is doing it all by himself! I don’t even have to guide him as much! In this video, you can see him again requesting hugs and kisses, but he is navigating all on his own and even when he hits the wrong word, he keeps going until he finds the word he was looking for. (We have ordered a key guard that will help prevent mis-hits and give Braxton greater accuracy). And just look how happy he is to be able to communicate! He is telling me what he wants and he is understood! So amazing!!

 

Speak for Yourself also has a “Babble” feature. If you only have 10 words open, you can select “Babble” and it immediately opens ALL of the possible vocabulary. A user can then explore different words and “babble” much like a typically developing baby or toddler would. (Think of baby talk, ma ma, da da, ga ga, goo goo – babbling these sounds is how babies learn to talk. We hear “ma ma” and immediately respond “Oh, you want mama? I’m right here!” That’s how babies learn that the sound ma ma means I want my mom.) AAC users using the SFY app can have that same experience. Braxton will tap different buttons and depending on my response he will find that button again. Sometimes he just stims on the words and his intent is not to communicate, but just to listen to the words and explore. Much like a baby would when they are cooing and babbling just to hear their voice. Lately, the babble feature has been a favorite of Braxton’s. I’ve caught him multiple times, “babbling” himself to sleep.

Braxton 'babbling' himself to sleep

Braxton ‘babbling’ himself to sleep

 

 

 

We are still just at the beginning of this journey, but I am so very excited to see all of the progress we are making. One of the many myths about AAC is the idea that using a device will impede an individuals ability and will to learn to speak verbally, but that couldn’t be further from the truth. The device is just one more language model and actually helps individuals learn verbal language. In fact, we have heard Braxton using his voice to actually babble a little bit more every day (except during speech therapy, of course!) and it’s so wonderful to hear new sounds. I have felt like we were on the verge of a verbal breakthrough for quite some time, and I feel that more than ever now.

I am so glad that we took the plunge and decided to start using Speak for Yourself. Braxton is now able to interact with the world around him in a whole new way. He is learning more each and every day and continues to make progress. I am so excited for him to return to school with his new skills. There is no way anyone can tell us now that this is not a good fit for Braxton.

Braxton WANTS to talk, he WANTS to communicate with us. The words are there, he just can’t get them out…yet. Speak for Yourself is now giving him a way to get the words out! He is able to communicate and tell us what he wants. The sheer pride on his face when he hears what he wants is priceless. He has finally found his voice! I can’t wait to hear all of the things that have been going on in that sweet little head of his.

 

——————————————————————–

Some Tips:

  • It’s never too early to introduce AAC.
  • No child is “too delayed,” “too young,” “too complex,” “too anything!” to learn an AAC system. My speech therapist repeatedly tells me stories of a patient she has who is completely BLIND who uses an iPad and an app to communicate. Motor planning is an amazing tool!
  • Research, ask questions, join the user groups – Jump in to discussions and ask questions. That’s how you learn!
  • DON’T GIVE UP! Don’t let the gatekeepers keep you from following your gut and helping your child find their voice
  • Don’t let anyone discourage you!!
  • PRESUME COMPETENCE – Instead of assuming your child can’t do it, give them the benefit of the doubt. Believe in them! They just might surprise you.
  • Try different programs! Again, there is no one-size-fits-all solution. What works for me, might not work for you, and that’s okay! Many programs offer a “lite” version or a trial period that allows you to try the app before you introduce it to your child.
  • Practice!!! We had the app for 6 months before we really started using it. Dive in and practice, practice, practice. You can’t teach the app if you don’t know it yourself! Don’t be afraid to explore.
  • BACK UP YOUR VOCABULARY! Many apps give you the option of saving your vocabulary (much like you back up your computer to a hard drive) which is a life saver when the inevitable happens. I’ve read lots of stories of iOS updates gone wrong, kids accidentally deleting the app, devices being lost or dropped in water – any number of things can happen. If you have a backup, you can easily restore your vocabulary and set up should anything happen to your program or device.

 

——————————————————————–

Some Resources: 

Uncommon Sense Blog – I mentioned Dana Neider several times throughout this post. She is a mother of a child with complex communication needs and also studying to become a Speech Pathologist. Her blog chronicles their journey with Augmentative Communication and she has some really excellent posts about their journey, resources, tips for advocating for your child, and how to get started with AAC. I highly, highly, recommend parents exploring AAC go and visit her blog.

Speak for Yourself – SFY was developed by two speech pathologists and their website is extremely informative. Their Facebook page and the Facebook user groups are very active and the app creators are very accessible and even respond to questions. I think that is one thing that I love most about this app. The creators are extremely active in the user community and even take user feedback constantly to improve the app.

PrAACtical AAC – This Facebook page offers some general information about Augmentative Communication that can be implemented regardless of what communication program or device you are using. They put out some really great resources and are also a very active page.

– There are SO, SO many resources out there and no list that I could put together would do this field justice. Search Facebook and twitter hashtags to find other users and resources. Visit family blogs (like this one) to learn what others are doing and the programs they are using. If anyone has any resources you’ve found particularly helpful, please feel free to link them below!

 

Leave a comment

Filed under AAC, Family, Life, Special Needs Child

I Can’t Believe Where We Are

FullSizeRender-3My sister sent me this today. It’s a photo of Braxton just 5 days old in NICU with a nasogastric tube, laying on a bilirubin blanket because he had jaundice. On top of a condition that doctors could not explain to us. It is crazy to think about where we were 4 years ago compared to where we are now. Every year since we left the NICU I think about the progress we’ve made and complete lack of hope we had in those early days.

 

4 years ago, we didn’t know what was going on with Braxton, and all the doctors led us to believe he was fighting for his life.

4 years ago, I watched my daughter’s face frown in sadness and confusion when we told her she couldn’t meet her baby brother. And every day when I left to sit with him in the hospital.

4 years ago, I sat in a cold hospital room surrounded by a number of other babies holding back tears and praying to take my baby home.

4 years ago, I couldn’t stop crying when I was alone because I wanted nothing more than to have my sweet boy with me at home, where he belonged.

4 years ago, I didn’t want to hear any “success” stories because instead of giving me hope, it made me feel like more of a failure.

4 years ago, I was lonely, sad, depressed, and desperately trying to hold myself together.

 

Today?

Today, we know that Braxton’s condition, while lifelong, is not terminal. It is not something that can be cured, but we embrace it as part of who he is and love him more than anything. We know that Braxton is full of life and spirit and joy.

Braxton

Today, Braxton’s sister is his biggest supporter and the bond they share is something incredible. The looks full of love and embraces mean the world to me.

Aileen and Braxton

Today, Braxton is at home walking and doing things toddlers do. Making messes, getting in to things he isn’t supposed to, taking all of the dishes out of the cabinets and drawers, climbing the stairs, crying when he doesn’t get his way, and so much more.

 

Braxton, doing typical toddler things, like climbing on the oven. (It wasn't on and it's now locked and secured)

Braxton, doing typical toddler things, like climbing on the oven. (It wasn’t on and it’s now locked and secured)

Today, I only cry on the hard days. The days when Braxton won’t stop crying and I can’t figure out why because he doesn’t have the words to tell me.

Okay, I take that back.

I still cry a lot, but there are more happy tears than sad. Especially when things finally come together and Braxton makes progress. Like when he recently learned how to use his Communication App (Speak for Yourself) to request hugs and kisses and in a matter of a few weeks it’s expanded to requesting other favorite toys and activities.

Today, believe it or not, I share OUR success story with others. I’ve shared our story through our blog, on tv, on radio shows, in newspapers (take a look here to see!), and I’ve even given presentations at conferences. I even have a pending webinar where I will talk to professionals about the family perspective and tips for making the experience better for families in those early stages.

Our first visit to KXAN for Feeding Tube Awareness Week.

Our first visit to KXAN for Feeding Tube Awareness Week.

Today, our family is not alone, we are happier, stronger, and full of life, love and laughter. What a difference from 4 years ago.

family-4

Our little family <3 (Photo by Grease Man Photography)

 

4 years ago, I would not have believed we could be where we are now.

Today, I still don’t have all the answers to what the future holds, but I’m no longer scared and look forward to the adventures that are still to come. Some days I don’t have it all together, but we make it through the day and try again the next. We take it a day at a time, choosing joy every step of the way.

Leave a comment

Filed under Family, Life, Special Needs Child

A love/hate ode to Rubinstein-Taybi Syndrome

This month, The Mighty is asking bloggers to write a letter to their child’s diagnosis. Here is our love/hate ode to Rubinstein-Taybi Syndrome a la 10 Things I Hate About You (I might have read too many Buzzfeed nostalgia pieces recently).

 

To my child’s rare diagnosis:

I hate that no one’s ever heard of you, and that you’ll always be around.

I hate the way that blue tag in my car hangs down.

I hate the way you make others stare.

I hate when my child hurts and I can’t read his mind.

Braxton and Dad

I hate that so much it makes me sick, it even makes me rhyme.

I hate the ways he’ll always be delayed,

I hate it when you make me cry.

I hate that you stole my child’s voice, even worse that I have to fight to get him a device.

I hate it when his basic needs aren’t met, and the fact that my answer to all developmental questions is “not yet.”

Mostly, I hate the way I don’t hate you,

Not even close…

Not even a little bit…

Not even at all.

 

You see, you’ve made me change my perspective, and

I see that there is so much life to be lived.

Braxton at the beach

That smile we’ve come to love is one of your many hallmark traits,

And that infectious laugh warms the heart and soul of all acquaintances he makes.

I appreciate the way you make me take a closer look

And celebrate the inchstones not found in any baby book.

We say that you don’t define him, but the him we know and love?

Well, without you that him he would not have become.

We’ve made peace with your existence and we know this path will be met with resistance.

Armed with faith, hope, and love this, too, we shall overcome.

They told us not to expect much, but they didn’t know his spirit.

The nevers became maybes, the maybes became soon, the soon became now and now we know he has no limit.

We have the courage to dream again without fear of the unknown,

Because now we have a community of support, and my how it has grown!

The people in our life we might not otherwise have known, had we not started on this journey feeling so alone.

Every challenge faced has made us stronger and now it’s more clear than ever, a hold you have on us no longer.

Braxton and Mom

Leave a comment

Filed under Family, Life, Special Needs Child

You Shouldn’t Wait for it to Offend You Before You Take a Stand

Today is the official day of awareness for the Spread the Word to End the Word campaign.

Per usual, I have been reading posts from various bloggers who I often read, and today a particular post struck a nerve with me – not in a bad way. The author wrote You’re not offended until it affects you as a response to someone who simply does not understand why the word “retard” can cause one to get so “worked up.”

I paused for a moment and let out a not-so-silent Amen! to myself. And then, I paused once more as I thought about my experience and how true that was for me personally. Which then led to me to think, “Wow, it’s such a shame that it took disability directly impacting my life before I changed my mindset.” Finally, I realized how true this is for MOST people.

So many people vehemently defend their “right” to say the r-word by citing their right to free speech among other erroneous excuses (see the article linked above), but what all those excuses boil down to is the fact that they likely have zero experience with people who have intellectual disabilities so they don’t understand the “big deal”.

They don’t know what it’s like to see a loved one struggle with the most basic of tasks, to wonder if their child will ever speak, to wonder if their child will ever walk without a limp, to wonder if their child will ever walk at all. They don’t know the fear in our hearts when we send our child to school for the first time and HOPE that he will be accepted by his peers. Will they tease him because he doesn’t walk fast enough? Or because her speech is slow and difficult to understand? Will they point and laugh because he rides the “short bus”? Will they simply call her a “retard” and walk away?

If these thoughts have never crossed your mind, you’ve probably never second-guessed your “right” to say the r-word either, but that still doesn’t make it okay for you to use the word. When we (parents of children with disabilities) correct you or bring it to your attention, it’s not to embarrass you or chastise you – it’s to educate you because we know you might not have had a clue how that word affects us and our children. We know because we’ve been you.

So many of us grew up using the r-word and never gave it a second thought. But then we grew up and had a child with a disability and “retarded” became part of our child’s diagnosis.  Suddenly, the word lost all of it’s hilarity. I was ashamed and embarrassed that I ever used that word so frivolously. Suddenly, the word had real meaning and it did NOT mean stupid, pathetic, loser, less than, ridiculous or any other word the r-word often replaces. With a single word, our dreams changed, our world turned upside down, and our instinct to protect our child from ever hearing the word kicked in. Suddenly, it became a very “big deal” and it was no longer “just a word.”

You’re not offended until it affects you.

Why should disability have to affect any of us at all before we are offended by the r-word?  I love my child unconditionally with no end, but I would not wish any of the struggles we have had on anyone, simply so that they understand the true significance of a word. Don’t wait until it is too late. 1 in 10 Americans are affected by a Rare Disease. 1 in 68 children have been diagnosed with Autism. The prevalence of other disabilities is just as great. Chances are, you DO know someone with a disability. They may not be YOUR child or YOUR family, but they are human and they have feelings and they deserve your respect. The r-word hurts an entire population of people, just as racial epithets do. It does not belong in our vocabulary and should no longer have a place in our culture. Find the compassion in your heart and hear my words. I don’t want you to know the hurt I have before this issue matters to you. Take a stand NOW. If one day, you learn your child has an intellectual disability you will be spared the shame and embarrassment I faced when that word became more than “just a word.”

 

Take the pledge now and Spread the Word to End the Word.

spread-the-word-to-end-the-word-2015

Leave a comment

Filed under Life, Special Needs Child

The Moments When Disability Becomes ‘Real’

So I’m sitting here waiting for a representative from the DARS Division of Blind Services (DBS) to arrive for our scheduled assessment. I received the call a few weeks ago and the representative briefly told me about all of the wonderful services and programs the DBS offers. There were many that I thought would be very beneficial for our family. She performed a quick “screening” to see if we would be eligible for services, but it was a mere formality, “With that CVI diagnosis, you’re sure to qualify.” I was excited to schedule the appointment and couldn’t wait to learn more.

But after I hung up the phone, a strange feeling swept over me. On the one hand, I was excited about the additional services, but on the other I realized that my child was now classified as “so disabled” that he qualified for all of these extra services. “With that CVI diagnosis, you’re sure to qualify.”

Not too long before this call, I received a notice that Braxton had reached the top of waiting list for the Deafblind with Multiple Disabilities (DBMD) Medicaid Waiver. If eligible for this waiver, Braxton could qualify for Medicaid on his own without taking in to account his parent’s income, which could disqualify him from receiving services. Again, excitement for the new services and opportunities, but sadness because of the “classification.”

BraxtonWhen I look at Braxton, I don’t see “disabled.” And I’m sure it is the same for nearly all other parents of children with special needs.

I see a tenacious young boy learning to exercise his independence and autonomy. A little boy who defies me when I tell him not to chew on his sister’s shoe by clamping down tighter or throwing the shoe across the room. Or even more developmentally appropriate, when he refuses to put it down until I walk up to him and he sets it down and tries to act like he never had it in the first place.

I see wide eyes and a bright smile that fill my heart with so much joy I could burst.

I see a wobbly walking toddler through tears of joy because ‘they’ told me he might not ever walk.

I see a child full of love who walks as fast as he can just to get a hug. Little hands that pull me back and squeeze ever so tightly because you can’t just get one hug.

I see wonderful every time I look at him, but every once in a while, that ugly feeling washes over me when his disability becomes real and unavoidable due to our circumstances.

When I watch him wobble across the room while a friend’s 2-year-old is running around, jumping on furniture, “are you SURE you want a ‘normal’ 3-year-old?” runs through my head.

When I finally gave in and asked our pediatrician to fill out the forms for a handicap placard; And not the temporary red one, the permanent blue one.

All the way back to the NICU when the doctor told us he would need a feeding tube and he might not ever eat on his own. Agreeing to the tube meant he was going to be different for the rest of his life. The tube meant he would not ever be ‘normal.’ What would people say? Would he ever be able to do things like a ‘regular’ kid?

Answering developmental questionnaires and marking “no” for all the things he can’t do.

When sitting in his first school ARD and there was no “fight” for services, because there was no denying that he needed them. Only, I didn’t recognize there was no fight until my ‘typical’ daughter needed help and it didn’t go near as smoothly because her disability didn’t affect her enough.

The day I finally parked in a handicap accessible space only to fear that someone would question me and therefore make me tell them, show them, “Look, look how disabled he is! The placard is for him.”

Perhaps it’s not that his disability is any more real in these moments than it is at any given time, but more so the fact that I have to accept it and recognize the ways in which it permeates our lives that hurts me so.

In three years, I feel like we have all come so far and we are in a good place, a place of acceptance and adjusted to what is ‘normal’ for us, so when these feelings intrude, it always surprises me. But, I recognize that grief is cyclical in nature. We are constantly moving through the stages of grief, sometimes staying in one stage for very long periods of times, which lulls us into a false sense of security until something jolts us back in to active grief.

I also realize that we are still very early in our journey and this feeling is only going to continue as the years pass. With every birthday, every milestone, every IEP Meeting, as I watch him walk next to his peers, as I dream about hearing his voice and awake only to find that he still has no words for me.

But then, there is that smile; the smile that brings me up from the depths of my sadness and self-pity.

That sweet, charismatic, wonderful smile as he turns his head like a bird to make sure I’m looking right in his eyes as I lay in bed and then he comes in for a hug and lays his head so sweetly on my shoulder and squeezes me tight. It is in those moments that the labels and services and countless appointments no longer matter. When wonderful returns and if only for a moment, disability disappears.

 

And with that there is a knock at the door. I squeeze my boy one more time and take a deep breath.

IMG_8832

 

 

2 Comments

Filed under Life, Special Needs Child

We Are So Thankful

The season of thanks is upon us once again and we have so much to be thankful for this year. Along the journey, we have learned to be thankful for everyday and grateful for all of the little moments throughout the year. As we reflect upon the last year, one thing stands out most; progress. We are so thankful for progress. Braxton has accomplished so much in a year and what once was very slow progress, is now exploding in so many ways.

This time last year, Braxton took his first unassisted steps and at most walked about 10 steps on his own. He was eating 2-4 ounces per day. He had no words and minimal sounds. Though progress was slow, there was, in fact, progress. Braxton can now walk unassisted, albeit a bit wobbly, an entire city block.

He’s on his feet more than he crawls around. He eats nearly 16 ounces every meal and you’d never guess there was ever a time he couldn’t or didn’t want to eat. He still has no words, but he is so much more vocal these days. Thanks to technology, he now has a voice through the Augmentative and Alternative Communication (AAC) app, Speak For Yourself on the iPad. He’s learning everyday how to use the app to communicate with us.

Braxton pointing and telling me he wants to eat on SFY.

Braxton pointing and telling me he wants to eat on SFY.

His dexterity, focus, and fine motor skills are still slow to come, but he is so much farther along this year.

Braxton learning to string beads

Braxton learning to string beads

These are huge accomplishments for Braxton, but there are also so many little things we are thankful for this year.

 

 

We’re thankful for the coos and babbles that wake us before the sun, because it means we’ve been granted another day.

We’re thankful for the extra minutes of rest we can steal when Braxton will snuggle in bed with us.

We’re thankful for the sweet smile and not-so-gentle pat on the back that says, “Wake up, guys!”

We’re thankful for the sweet way Braxton pulls you close for a hug and rests his head on your shoulder.

We’re thankful for the way Braxton pulls our arm back around him when the hug wasn’t quite long enough.

We’re thankful for the look Braxton gives when he recognizes you and the way his eyes light up and his beautiful smile crosses his face.

We’re thankful for the way his whole body tenses up and he shakes with excitement, or kicks his little legs.

Big Smiles

We’re thankful for silent way Braxton says “I love you.”

We’re thankful for the incredible sibling bond he shares with his amazing big sister.

A sibling love that cannot be broken.

A sibling love that cannot be broken.

We’re thankful for the messes Braxton makes, because it means he’s mobile and independent.

We’re thankful for the countless hours of therapy that have helped Braxton along the way.

We’re thankful that we are down to seeing our specialists once a year.

We’re thankful for Braxton’s good health as of late.

We’re thankful for the sweet moments in parenting that melt away bad days and tell us we must be doing an alright job.

Sleeping

We’re thankful for therapists who have been in our home since Braxton was 8 weeks old. Their tireless work with Braxton goes far beyond therapy. They love and care for our sweet boy and share in our pride when Braxton reaches a goal. Braxton is not just a patient or a paycheck to them. We have been extremely blessed.

We’re thankful for wonderful teachers who have joined our team this year and have already fallen in love with Braxton. They have such a love for all of their students and we’ve seen such progress since Braxton started with them in August.

Braxton walking with his teachers

Braxton walking with his teachers

We’re thankful for the tantrums Braxton throws when he gets told “no” or has a toy taken away, because it shows he has the cognitive ability to understand and a way to communicate when something is unpleasant. It’s also a “normal” toddler reaction, so it’s a nice reminder that not everything in our life is atypical.

Braxton Upset

 

We’re thankful for the times Braxton gets himself in trouble by opening the oven door, swinging the lid on the trashcan, opening the cabinets and banging pots and pans, or unraveling an entire roll of toilet paper, because do you know what cognitive and motor skills it takes to do any of these things!? Although it can be frustrating and we get upset with Braxton, inside we are elated because this shows so much progress!

We are thankful for the sweet laughter that fills our home daily.

 

We’re thankful for family that loves and supports us in so many ways.

We’re thankful for friends who care and share in our joys.

We’re thankful for people who read our blog and share our Facebook posts and have fallen in love with a little boy they have never met.

We are thankful every day for so very much in our lives. We remain positive in our journey because positivity has so much more power and love than focusing on the negative. We have bad days, but they don’t last long because we allow positivity to permeate every aspect of our life.

We wish the same for you. Look for opportunities to be thankful. Live every day with gratitude and positivity. Let your thanks extend beyond today and this season. From our family to yours, we wish you a very Happy Thanksgiving.

 

Leave a comment

Filed under Kids and Family, Life, 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

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!!

——————————————————————-

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

 

Leave a comment

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

Happy Tubie-versary!

Today marks 3 years since Braxton’s very first surgery, which was to place his G-tube.  Braxton was just 2 weeks old and still in NICU when it was placed.  You can read all about the Day Braxton Became a Super Tubie from last year’s post.

We have come a very long way in 3 years.  I still remember everything about the day we were told he would need a tube and the day of surgery. When his button was first placed, we honestly had no idea how long Braxton would need his tube and the doctors could not provide anything other telling us he would need to have it “long-term.” We have had many struggles with eating over the past few years and we are very grateful that Braxton has had his tube all this time.  His tube has allowed us to feed him even when he is sick, give him medicine when needed, and make sure he gets the nutrition he needs to gain weight in a healthy manner.

Braxton climbing in to his chair getting ready to eat!

Braxton climbing in to his chair getting ready to eat!

Braxton is finally eating by mouth, something we weren’t sure if he’d ever really be able to do.  He is eating about 30-40 ounces of pureed foods every day! He gets about 1100-1300 calories per day and we supplement with a multi-vitamin to make sure he is getting everything he needs nutrition wise.  We haven’t had to use his tube for food in quite some time, which is a magnificent feat! Braxton even tells us when he is hungry now, which is HUGE for a tube-fed child! Because children with feeding tubes are usually kept on such a strict schedule, they do not know or understand what it means to be hungry.  Braxton still does not speak, but he will “tell us” he is hungry by going over to his feeding chair, climbing in, and he will sit there until we notice him. If it’s not quite fast enough for him he will start to whine/cry to let us know “hey! I’m really hungry over here!” He’s eating every 2-3 hours right now and his schedule was every 4 hours before, so he is really understanding what food is and what it means to be hungry. He truly enjoys eating now, and that is fantastic!

We still use Braxton’s tube for fluids because he isn’t quite drinking anything by mouth yet.  We have been working on straw drinking in therapy and he has drank up to an ounce! We’re working on different flavors and increasing that volume.

So, we truly know now that Braxton will not need his tube forever, but it’s still not going to be taken out soon.  We want Braxton to be fully drinking on his own and eating “table food” before we remove his tube.  We are making significant strides in the right direction.

Braxton, Super Tubie!

Braxton, Super Tubie!

The other day, I saw a post on the Feeding Tube Awareness Foundation’s website about an interview with siblings of children who are tube-fed and found their perspective very interesting! Since special needs and things like tube-feeding really effect the whole family, the FTA group brought in this sibling perspective.  This inspired me to talk to Aileen about her brother’s tube and see what she knew and what she thought about his g-tube.  I recorded the conversation and thought it would be great to share in honor of his tubie-versary!

Enjoy!

 

 

 

 

 

 

2 Comments

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