When Being His Voice Hurts

There was a lot of hand-over-hand help, but Braxton enjoyed coloring his project.

There was a lot of hand-over-hand help, but Braxton enjoyed coloring his project.

Braxton came home with an assignment this week- to fill out an “All About Me” Poster. I looked at it and thought how fun it would be to work with Braxton helping him color it in and gluing pictures to show his classmates. All the standard questions were there, My name is ___, I am __ years old, I live in ___, and then there is a space for Braxton’s picture, and finally I get to “I want to be a ___ when I grow up.” I mentally filled in the blanks for all of the other questions as I looked it over, but when I got to that last one I paused.

I don’t know what he wants to be when he grows up.


Questions like that make me sad for a number of reasons.

For one, I don’t even know what I would “make-up” as a realistic answer because I don’t know what he will be capable of in the future. Sure, parents tell their kids that they can be anything that want to be and we don’t ever want to crush their dreams, but as a parent of a child with special needs I feel a greater responsibility to make sure those dreams are realistic. I want to always set my son up for success and one of the ways I can do that is by giving him attainable goals. Even if they are out-of-reach they should still be attainable, meaning that if he really worked hard and everything fell in to place, it could be possible. Picking something out of the sky hardly seems fair.

Secondly, I think what hurts most is  when I realize that he lacks the ability to answer for himself when it comes to likes/dislikes, preferences, goals, dreams, etc. Even if what he wanted to be when he grows up is unattainable, he can’t even tell me what that dream might be. I don’t know if he wants to be fireman, a teacher, a doctor, the president of the United States, or any other profession. And I feel completely guilty when I have to pretend that I know what he would say.

There is a big difference in speaking up for him and speaking for him. I will always speak up for Braxton because I am his parent and advocate. I will be his voice to make sure his needs are met and to be certain that he is treated with kindness and equality. Speaking for Braxton diminishes him as an individual and inhibits his ability to think for himself. Just because he cannot tell me what he wants to be does not mean that he does not have a dream for his future. Speaking for him could eventually send him the message that what he has to say is unimportant and not only will he stop thinking for himself, but he will then lack all motivation to speak for himself. I don’t ever want Braxton to feel that way, which is why speaking for him, even in what seems like meaningless situations (like a class assignment), brings on so many mixed emotions.

Braxton has made incredible progress with his Augmentative Communication Device, but he is still not able to fully express himself like I would like to see. I know that he will get there eventually and I’m so glad that we have given him the tools he needs to be independent in his thoughts and expressions. But, until he gets there I struggle with how to handle speaking for him when it is called for and how it may or may not impede his ability to speak to us later on.

So, how did I end up answering the question?

While I have no clue what Braxton would like to be when he grows up, I think we can all agree that whatever it is he decides to be, he will be totally and completely AWESOME!

When I grow up

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The Swingset That Almost Wasn’t

Earlier this year, I learned that Braxton became eligible for programs provided by the Department of Assistive and Rehabilitative Services (DARS) Division of Blind Services (DBS). One of the DBS’ main goals is to help individuals get involved in their community and to help them do the same things as their peers. As part of this mission, DARS-DBS will cover the cost of camps, alternative therapy (music therapy, hippotherapy, aquatic therapy, etc), learning toys, therapeutic equipment, and much more.

At a recent meeting with our case manager, we mentioned looking into buying a trampoline or playground set for our backyard. A few days later I received a call that there was money in the budget for DARS-DBS to purchase a playground set for Braxton. I was shocked and elated! Braxton loves going to the playground to swing, and now he would be able to do it anytime he wanted. Not to mention how beneficial it would be for our in-home therapists to implement in their programs. We were thrilled and made plans to meet our case manager at the local Walmart to make the purchase.

The elation was short lived.

We arrived to Walmart and ran into issues making the purchase. The cashier did not know how to process the transaction using the DARS-DBS state credit account, so he called a customer service rep. The rep (who was in no hurry at all to help) finally arrived and completed the transaction. As we waited for help to load the swing set into our truck, the rep frantically came back and told us there was a problem. He said that this type of transaction was not allowed and we could not take the set with us. Our case manager tried to explain the process to the young man and let him know that the program makes purchases like this throughout Texas and have never had an issue. As the rep repeatedly huffed, puffed, and rolled his eyes he continued to insist that this wasn’t allowed per his manager. He was reluctant to help and refused to call the 1-800 number on the voucher for further instructions. When we asked to speak to the manager, he made some calls, and then simply turned around and said “Yea, my manager said we can’t do this.” After demanding to speak face-to-face to a manger, one finally arrived. We explained the situation again, pointed them to a 1-800 number on the voucher and asked that they please call that number to verify the purchase rules and how to go about processing this for us. After some time, the manager and customer service rep returned to say that hotline was closed so they could not get through to anyone who could verify this type of purchase. This all happened over the course of about 2 hours.

At this point, the manager was at least somewhat apologetic about the situation, but adamant that this type of purchase was not allowed at their store. He even brought out the Asset Protection Manager who tried to tell us keying in the account number was absolutely against company policy. He stated that he would attempt to call the number the next morning to try and get it resolved. Our case manager made plans with us to meet again the next day.

The next day arrived and our case manager called before we all headed up to the store again. The manager said he had not yet called, but would call ‘within the hour.’ Over an hour passed with no word, so our case manager called him and he said that he had been trying “all morning” but the line would just ring and ring with no answer. The case manager called the number herself and got right through. She obtained some further information about the Walmart Corporate office to give to the store manager to hopefully resolve everything. After several phone calls and several hours, everything was finally resolved and the manager gave the okay for us to make the purchase. We returned to the store and again the cashier did not know what to do and called a customer service rep. We told them which manager we spoke to and asked that they please call him to verify that the purchase could be made. Finally, the purchase was completed and we got the swing set home.

The entire situation was so poorly handled by nearly every employee involved. Having worked in retail, I can certainly understand the frustration something like this brings, but I do not at all understand the pure lack of empathy and poor attitude by the entire staff. Not one person was willing to go above and beyond “what they’re paid for” to help a customer.

There are several things that could have been done to help us out from the beginning. For one, the customer service rep should have brought the manager over immediately instead of making us feel like a burden for making him do his job. Secondly, he should have called the hotline when we arrived and the office would have been open. Instead, his reluctance dragged the time on which made us miss the people who could have helped everything. Thirdly, when our case manager brought it to their attention that she has personally made these purchases at nearby Walmart locations, the manager could have offered to call one of the other stores to speak to a manager who has done this before, but that never crossed his mind. Lastly, once the manager finally learned that this type of purchase was allowed, he should have personally gone over to the garden center and/or Customer service to let them know we would be returning to make this purchase. None of this was done. In fact, absolutely nothing was done or said to help rectify the situation.

The really unfortunate thing is that we are not the only family in this area served by DARS-DBS, and now because of this experience it would be difficult for our case manager to take another family there only to be turned away. If the manager did not prepare his staff for our arrival the day he learned of this program, it is highly unlikely there will be any storewide training and every family who enters will be made to face this kind of treatment, which is absolutely unacceptable. They have lost business simply because of their unwillingness to learn, adapt, and go above and beyond their pay grade.

Braxton on his swing set

We finally put that swing set together this week. The pure and simple joy on my son’s face, made the hassle worthwhile, but it reminded me of the fight we face all too often with the “gatekeepers.” The gatekeepers who keep us from making appointments in a timely manner, the gatekeepers who keep us from services that could greatly help my son’s quality of life, the gatekeepers who show no emotion and no empathy for the very people they are supposed to help. Everything in our life has been a struggle. Getting a swing set to help my son be like other 4 year olds frolicking in their backyard wasn’t supposed to be so difficult. There was a time I didn’t know if he would ever be able to swing or slide down a slide at the playground, much less one in our backyard. Thanks to DARS-DBS he can now have that experience just like other kids his age.


Swingset Therapy

The set is also now a huge part of our therapy plan. Our Physical Therapist has already had Braxton outside working with him to climb the stairs so he can slide down all on his own. I stood by and watched as they worked together. I saw Braxton’s foot go up to the next rung unprompted and thought of all the hard work it took for him to gain that skill. For now, he needs help, but one day (soon) he will be able to maneuver the playscape with little to no help. What a shame it would have been had we allowed yet another gatekeeper to keep us from having this experience.

If this makes it back to our local Walmart, I want you to look at the joy on this little boy’s face, and I want you to know that YOU helped put that smile on his face. Yes, you made it quite difficult for us, but at the end of the day it doesn’t matter whether you apologized or admitted you were wrong (although that would be nice), what matters is this sweet face and the fact that YOU have the potential to help other kids like him with much less hassle. I hope that you learned something from having us in your store. I hope that you share what you learned with others so that this wonderful state agency can continue serving children in our area. All of our children deserve a chance to just be children. Not children with disabilities, just children. Children who want to play and be free and be loved. Please don’t take that away from our sons and daughters.


Braxton on the slide

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An Unexpected Setback

Braxton had a follow-up Swallow Study today and we got some unexpected news.

A few weeks ago we followed up with our Sleep Doctor/ Pulmonologist and I mentioned to the PA that Braxton had recently started making a strange noise while he was eating, like he was clearing his throat and then swallowing his food. I didn’t think much of it until we were at the appointment and something told me I should tell the doctor about it, considering Braxton’s history of aspiration (swallowing liquid into his lungs). The PA was concerned enough to talk to our main pulmonologist who decided we should order a new swallow study. She also listened to his lungs to make sure they were clear, and they were.

Here is a video of what we were seeing:


We didn’t make any feeding changes and I made sure to talk to our Speech and Occupational Therapists, we were all stumped. Our Speech Therapist thought it could have something to do with all the ear trouble we have been having this summer since the ear and throat are all connected. It would certainly make sense if swallowing was hurting his ears and he was trying to relieve the pressure or whatever it is he was feeling. He still seemed to be swallowing normally and wasn’t showing any signs of aspiration, so we continued with our current feeding regimen.

IMG_2347Today we finally had the swallow study. I went in not expecting much of anything, but we may have a new issue to worry about.

During the test the speech therapist and the tech kept saying they saw Braxton regurgitating the food which is part of the reason we are seeing multiple swallows and the throat clearing. There were also a couple instances where it appeared he *might* be aspirating again. He was surprisingly calm and cooperative the entire time, so aside from the Barium not being so tasty, he did exactly what we would see at home. Once completed, we sat in the waiting room while the speech therapist and tech reviewed the recording to discuss their findings and recommendations with us. It took much longer than it has in the past.


The speech therapist finally came out and let us know that while she is not able to give us an official diagnosis, what she was seeing appeared to be an esophageal dysfunction. When you eat, your esophageal sphincter opens to allow the food to pass and then it closes so that air does not enter. Braxton’s upper esophageal sphincter is sometimes opening properly and other times it is opening and closing before his food gets to the esophagus. And there are times that the esophagus regurgitates the food which gives him trouble with swallowing. She also noted that even when everything works properly he is taking two or more swallows per bite.

So, now we need to figure out what exactly is going on with his esophagus. We’re looking at some kind of structural anomaly that we haven’t seen before. The speech therapist said she’s never seen what she saw today with Braxton. She also called in another radiologist who also said she’d never seen this. (Of course! Braxton has always been quite the medical mystery).  The plan for now is continue with oral feeds, but she was insistent that we proceed with caution since we don’t know what is really happening. We will need to cut back on his food and give him smaller bites since he did seem to tolerate that better than the larger bites. She will also be making a recommendation for us to get back in to the Aerodigestive Clinic so that our ENT, GI, Pulmonologist and a Speech Therapist will all be able to see him at the same time so we can all discuss what’s going on and formulate a plan.

I’m really not sure where we go from here, but obviously, this was not the news we were expecting. This could explain why we have had some difficulty getting Braxton to move up to thicker foods and different textures. Cutting back on feeds will certainly be a setback we didn’t expect. But, like all things, I know we will make it through.  I hope we can get some answers and clarity very soon. And to think I almost didn’t even bring it up to the doctor!

I am doing my best to stay away from Dr. Google today and patiently waiting for a follow-up with our doctors. Braxton and I enjoyed some time outside this afternoon on his new swingset. His sweet smiles and laughter filled my heart, and for a moment all was right in the world.



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Welcome Back, Team Braxton!

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


Welcome Back, Team Braxton!

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

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

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

Gross Motor Skills

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


Fine Motor Skills

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

Speech and Communication

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

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

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

Feeding and G-Tube

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

Hearing and Vision

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

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


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


All the best,

Braxton and his parents :)


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So will he ever speak?

When Braxton first got his G-tube at 2 weeks old, inevitably the first question I was asked after explaining his tube to family, friends, and strangers was, “So will he ever be able to eat by mouth?” For the longest time my response was, “I don’t know,” and we genuinely did not know. Once we started working with a Speech Therapist and making progress, that “I don’t know,” turned into “Yea, more than likely he will be able to eat like you and me, but he’s still learning.” Nearly 3 years later and you would never know there was a time he couldn’t eat. He still uses his tube for liquids, but he eats all of his meals by mouth. He still only eats purees, and we continue to work toward table food, but he IS eating.

Our journey to communication has been similarly riddled with questions and uncertainty. When we learned of his hearing loss, we quickly began learning sign language. Family and friends asked “Do we need to learn sign language, too?” I don’t know. Braxton did not pick up sign language as quickly as we had hoped and it seemed almost pointless to make our family learn, too. Instead, we encouraged them to continue speaking to Braxton just as they would any other child. That constant exposure to language was still just as critical. We hoped for verbal language, but were never sure if it would come.

When we finally received the diagnosis of Rubinstein-Taybi Syndrome  (RTS), we learned from other families that many of the children are non-verbal and use sign language or a communication device to speak. There are many who have at least some words and a few who are very verbal. Where would Braxton fall on that spectrum? I don’t know.

By that time, we had already started on the path to high tech Augmentative and Alternative Communication (AAC), and the diagnosis confirmed this was the path we needed to pursue, always holding on to the hope of verbal speech. We saw little progress at first, but we saw enough to keep hope alive and to continue this path. The dream has always been (and will always be) verbal speech, but the goal is communication. Communication using whatever means necessary.

As we have worked on using Speak for Yourself, a communication app on the iPad, quite heavily in the past year, the inevitable question has become “So, will he ever speak?” I don’t know.

I don’t know if he will ever speak.

I don’t know if we will ever hear his precious little voice.

I don’t know if I will ever have the chance to tell him to stop talking. (I don’t know that I would ever want to say that after waiting so long to hear him).

I don’t know what the future holds. We simply hope for the best.


Here’s what I DO know…

I know that by pursuing AAC we are giving him a way to communicate with us NOW.

I know that AAC is giving him his best chance to succeed.

I know exactly when he wants hugs and kisses, because now he can tell me with his talker.


I know exactly which toy he wants to play with.


I know that he likes to read.

I know that he likes to be outside.

How do I know? Because he can ask for it himself using his communication app.


To see this explosion of communicative skills grow right before my very eyes is nothing short of a miracle. Today, he was roaming around the living room with a slight whine and I tried so hard to find out what was wrong. He had just eaten not long ago, he had a fresh diaper, and he was playing with his toys. I looked around to see if a toy was broken or not working as intended, but nothing. I sat down and rhetorically asked what was wrong. Braxton saw his talker and walked right over to it, turned it on and hit “sleep” repeatedly. Then he climbed on to the couch where I sat watching him, laid himself down in my lap, pulled my arm around him and closed his little eyes.

Braxton Asking to Go to Sleep


The dream is verbal speech, but the goal is communication. Braxton just purposefully and successfully communicated to me that he was ready to go to sleep. Because of AAC, we can check that goal off our list.

Braxton now has a way to communicate and interact with the world around him. He can tell me what he wants, he can tell me what he likes, he can tell me that he loves me, he can tell me anything he wants, because we have provided a means to do so. Speak for Yourself has given Braxton a voice. A voice he is learning to use quite well!

So, will he ever speak? I don’t know. I haven’t given up on verbal speech. I would still LOVE to hear his voice, but I LOVE that I now have a way to know what’s going on inside his beautiful mind even more. One day, maybe he will verbally talk to us, but for now, he’s communicating and I couldn’t ask for anything more than that.


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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)


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.



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!



Filed under Life, Family, Special Needs Child, AAC

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, 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.


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.


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.

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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

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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.


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