Tag Archives: communication

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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Filed under AAC, Kids and Family, 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.

 

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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.

 

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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!

 

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Filed under AAC, Family, Life, Special Needs Child

Forget What You Thought You Knew

Parenting: “You think you know, but you have NO idea!”

Forgive me for using a lame MTV catch phrase, but it is completely applicable here.  For those who have kids, remember BEFORE you had kids, when you were convinced that every other parent was doing it wrong and that your children would be angels because you were just THAT good and actually raised right?! If you don’t have kids and you think that…well, you will learn someday.

We ALL had it figured out once upon a time, and then we actually had kids and every parenting philosophy you thought was surefire just flew out the window.  If parenting has taught me anything, it’s that I knew nothing until my kids came along.  And let me tell you, it’s different with every. single. kid! After Aileen was born, I thought I had everything down pat.  She was a pretty “easy” baby and didn’t really give me a whole lot of problems…until she started school. Oy vey! I’m not so sure I even know what I’m doing anymore! Then, when I learned I was pregnant with Braxton, I was fully armed with all my tricks that had worked for Aileen, I knew what to do and what not to do since it didn’t work with Aileen….and then bam! I have a child with special needs.  What. the. heck am I supposed to do now!? I’ve absolutely been a parent before, but let me tell you, I’ve had to re-learn so many things that I actually feel like a first time parent most days.

I know how to feed a baby.  I had to learn how to use a feeding tube to feed my child.  I was determined not to let my 2nd child sleep in bed with me or even in the same room.  His crib was all set up in the other room.  Then we brought him home from the hospital and he HAD to be in the bassinet right next to me so I could make sure he was still breathing and change his feed every few hours.  I knew all these wonderful fun games to play with my child and couldn’t wait to get started.  He did absolutely nothing the first few months of his life, didn’t make much eye contact, no smiles, no laughs, and he rarely cried.  Yes, we still played and sang to him, but the interaction was missing.  I wasn’t prepared for that.  Every step of the way has been something new I’ve had to learn a different way of doing than I had originally planned/expected/assumed.  Obviously, all of the major tenets of care had to be re-examined and I had to learn the proper way to care for Braxton.  One thing I didn’t expect to have to learn was how to communicate with my child.

Good morning smiles

Good morning smiles

Just because a child doesn’t say words, doesn’t mean he doesn’t know how to communicate! It’s not that I thought he had no communication skills, I just didn’t know what to look for or how to understand the ways he was communicating.  I’m a Communications Major, but in his two years, I have learned so much more about communication than I ever did in school.  I took several courses in non-verbal communication and body language; and I’ve used some of that knowledge with Braxton, but he could write his own book.  As an infant (this goes for ANY infant), he communicated with his cries.  Infants cry when they are upset, need to be changed, need to be fed, are in pain or just want to be held.  Yes, there are different cries for each and as a parent, you learn to listen for each one.  This is a very early form of communication and essential in teaching skills that are needed later in life. NO, not to cry when you want something, but the importance of using your voice to indicate a need/want.  In toddlerhood, those cries are transformed in to pointing, grunting, and even words.  I can recall several instances where Aileen tried to just cry to get her way and I had to re-direct her and tell her to “use your words.” Braxton is in his toddler stages, but obviously, he has no words yet.  But he definitely has some communication skills.

Braxton still uses his cry as his primary form of communication.  He uses it more and more now to tell us when he is upset or doesn’t like something.  For example, if he is playing with a toy and we take it away, he will sit back and start to cry, well whine actually, but where most people would see a spoiled child, I see him telling me that he wasn’t done playing with that toy. After all, it’s his ONLY way to truly get his point across at this time.  His cry let’s me know that I did something that he didn’t like.   Sometimes, we can re-direct him and get his attention on another toy and he’s happy again.  The important thing is that he has an opinion and he’s learned to use his voice despite not having the words.  His cry is different than when he is truly upset or in pain.  We’ve had to learn how to tell the difference to address his needs.  And like any toddler, he’s used his cry to trick us in to letting him stay up a little longer or he especially gets his grandmas because they can’t stand to see him cry.  He absolutely knows this, so he will cry and undoubtedly he will get picked up and he starts laughing or has a goofy grin as if to say “haha I got her!” When he is happy, he smiles or laughs, of course.

Braxton isn’t really pointing, but he will crawl up to me and pat me to get my attention.  It’s usually when I’m cooking and he will come up behind me, pat my legs, and when I turn around he looks up at me with a big smile and lifts his arms up to me.  As I scoop him up he laughs and will nuzzle his head in to my neck or put his lips on my cheek.  It is the sweetest moment ever!  In that one moment, he speaks so much louder than his words ever could.  I feel so much love and happiness.  When I arrive at daycare to pick him up and he spots me from across the room, he crawls as fast as his little legs will go and comes right up to me and does the same.  So he knows how to get your attention and make you feel loved.

He is even waving goodbye! When I pick him up from daycare he lifts his little hand and gives a quick wave to his friends. It’s so interesting because he will not do it on command and he will usually do it just the one time.  But, it’s always at the appropriate time.  I’ve noticed it as we leave other places as well, so it’s clear that he understand what he’s doing, but just doesn’t have the ‘command’ down yet.

We have been very active in learning sign language, and I definitely know more than I think I do. It’s still a little difficult to practice, because we don’t need to use it regularly just yet.  Braxton has yet to pick up any signs, but we try to sign with him to give him at least the exposure.  We are making more of an effort to commit many of the signs to memory and have done pretty well.  Aileen has surely been the best.  She loves to learn new signs and is often asking for the sign to different objects.  It’s awesome to see her take to it and see the pride she has when she uses a sign correctly.  I’m certain Braxton will learn soon too, but until then, we are working very hard to learn and understand the ways in which he is communicating with us NOW.

There are days where I just have no idea what’s going on.  It’s frustrating for us and for him. He will just cry about everything and we offer his favorite toy, change him, feed him, try to cuddle, try to put him to sleep, and just nothing works.  Braxton is usually very happy, but just like any other kid, he has days where he is just a grump.   Just imagine not being able to express yourself or get your need addressed.  I had laryngitis pretty bad a while back and absolutely could not speak for about 3 days.  I was miserable.  Miserable after only THREE days! Couldn’t imagine being without words every day of my life! It’s a tough road ahead, but I know we will get through it.  Braxton has taught us so much and continues to do so each and every day.  He definitely reminds me to keep an open mind when it comes to new milestones and new methods of teaching him.  Just because “I’ve done this before,” or read a book once, does NOT at ALL mean I know what I’m doing.  We learn something new every day.  I notice new ways that Braxton communicates with us all the time.

If you are a new parent, new to parenting a child with special needs, or just having a day where you don’t understand your child, take a deep breath and relax! Allow them to teach you! If you just sit back and watch, you will see their communication skills come out in ways you never imagined.  They will show you exactly what they need if you give them a little time.  If it’s just a grumpy day, it’s ok to leave the room for a few moments, you can both use the space to clear your head.  Just forget what you thought you knew before you had kids, all that matters is what they are going to teach you every day for the rest of your life.

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Whatever It Takes

At the beginning of the year, I really started worrying about communicating with Braxton.  At 18 months he had zero words and really no way of communicating with us.  I decided then that I really wanted us to learn sign language because we weren’t certain if Braxton would always be non-verbal.  I took a class in high school and I did baby sign language with Aileen and watched “Signing Time,” but unfortunately a lot of it didn’t stick with me since we were also speaking and didn’t really NEED to sign.  I began talking to our Auditory (AI) therapist who sees us in home a few times a month.  Then, we met with our early intervention coordinator and ended up increasing our monthly visits with AI so she now comes once a week to meet with us.  She mostly plays with Braxton to help us learn how he is communicating and she signs constantly while they are playing, so we asked her to help us learn.

Not too long after, we learned that one of the other Auditory therapists was planning on teaching a sign language class and it would be open to parents and other educators. [She was also going to be doing this completely VOLUNTARILY! I’m always thrilled when I learn people are so willing to give of themselves for something they are so passionate about regardless of compensation.  I’m so grateful to the woman teaching and the educators going the extra mile to come to class – after all, they are the ones who will be working with Braxton when he goes to school. This is great for a mom to see! It’s scary to think about putting Braxton in public school at 3 years old, but when I see that the people who will be working with him are genuinely invested in the kids, it puts my mind at ease.] Anywho…We started the class in Mid-March and we only have a few classes left now.  I have learned so much and am truly surprised by the amount I have retained.  Now that we know Braxton will most likely NEED sign language, I’m glad my mommy intuition made me want to learn and that we asked for more visits and resources. Aileen is even learning with us! She thinks it’s very cool to learn and is always excited to show off her skills.  Here is a video after our first class of Aileen:

She’s gotten a lot better and actively asks questions and tries to fingerspell which is fantastic! She’s truly the best big sister ever!

Through the class, we are learning Signing Exact English (SEE).  SEE differs from American Sign Language (ASL) in that it is an exact representation of the English language, so there are signs for different tenses and different pre- & suf- fixes.  It was explained to us that SEE is beneficial to a child because when they learn to read and write they will be able to read/write the exact way they have been signing because they have a grasp on grammar and syntax of spoken English.  ASL is a language in and of itself, and it has it’s own rules about grammar and syntax so when it is written out, it doesn’t translate exactly, which can confuse students.

Our hope is that Braxton does learn to have some verbal language, but if he doesn’t, we want him to be able to express himself.  We are also open to him using Alternative and Augmentative Communication (AAC) which is communicating through a technological device.  This can be an iPad or some other “talker” device. There are so many options and apps out there today, so it is no easy choice.  We are working very closely with our Speech Therapist and when Braxton is ready, we will try out different apps and devices to find what works best for him. For now, we are using an iPad with him just so he is familiar with it.  He is getting a lot better at handling it and actually touching the screen with his hand instead of using his head or trying to eat the iPad instead! A few of his therapists even use them with him during their sessions.

We are willing to do whatever it takes to help Braxton be successful.  Sign language, picture cards, Communication devices, anything and everything available.  Braxton is definitely finding ways to communicate with us now, and while he still doesn’t have any words, we are learning his cues. We have learned so much already on this journey, not just about all of Braxton’s medical issues, but also more about ourselves.  We’ve learned how strong we can be and how to be better parents for Braxton.  We look forward to the road ahead – Braxton is going to continue to surprise us all.

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Braxton and Mommy Day

BIG Smile for momma :)

BIG Smile for momma 🙂

It’s been a while since Braxton and I had a day to ourselves. Aileen is with her dad this weekend and Joseph is gone for business, so it was just Brax and me. We had a pretty laid back day, but I noticed so many new things today and in the past week or so.

Braxton is really starting to recognize us and show emotion when does. In the past few weeks, every time I go to pick him up from his crib I stand over him and when he looks up and notices me, he flashes a huge smile. When I put my hands out and motion “come here” he gets noticeably excited and immediately rolls over, pushes himself up to his knees, looks right up at me and puts his hands out as if to say “pick me up, mommy!” Sometimes he will pull himself to a stand and kind of bounce in excitement. If I have to be up early, that is certainly what I want to wake up to. This is a picture my sister took when she saw him, but this is pretty much exactly what he does when I stand over his crib in the morning.

I see you!

I see you!

We came downstairs so I could feed him and I also tried to give him some applesauce by mouth. Surprisingly, he actually ate a good amount for me! Braxton ate about an ounce at breakfast and just over an ounce at lunch and dinner…yayyy!! It may not seem like much, but this is HUGE for him! He hasn’t been eating much of anything for us. It’s so funny because he puts everything, and I do mean EVERYTHING (that isn’t food) directly into his mouth and tries to chew on it. But if he even sees anything at all food related, he purses his lips, turns his head, and even puts his hand out to push me away – and sometimes screams and cries if I continue trying. I’ve tried everything from baby food, cookies, crackers, cheetos, french fries, pudding, yogurt…and every one of them as soon as they get anywhere near his face he refuses. So, getting even a few bites in is a big deal, an entire ounce is a HUGE deal, indeed! Our Speech Therapist is still very diligently working with Braxton, too. I got this photo the other day…apparently eating is also pretty hard work! He fell asleep today, too, after I fed him.

Nap after a full belly

Nap after a full belly

 

Braxton and I played a whole lot today! He is so much more interactive now and playing with purpose!! He actually mouthed his toys a lot less today than he normally does. He stood up at his little piano and played using his hands instead of his mouth. He even leaned over to find the buttons on the back and played with those. We made silly sounds back and forth to each other and when he made me laugh, hearing me laugh made him also laugh..it was so cute. We read a few books and it’s evident that Braxton actually likes being read to. He will sit still in my lap as I read to him (ok, point out pictures and describe what we see, but still) and is turning the page all by himself! [Thanks to our great Occupational Therapist, he’s doing soooo great with that….little bit less cheating today by reaching over with his left hand haha smart kid.] He even made some great transfers from our couch to the coffee table and cruised around the table!! Pretty impressive, little man! Showing off all the things he’s been working so hard to accomplish with each of his therapists. He of course sat at his patio window and I sat with him and pointed out the trees and the birds as they came in to the yard. Nice to just sit and be still.

We also went to the grocery store today, and Brax was so funny. He was making all kinds of sounds as we walked around the store. Also, as I was waiting to check out, I had my hands on the grocery cart (like I always do) and Braxton kept reaching out to me. So I turned my hands over so he could pat them like he often does, but he started clasping his hands around them and trying to pull them toward him. Each time I moved my hands like I was moving toward him he smiled and got really excited. Then, he finally grabbed my hands and pulled them to his side, and I finally realized what he was doing…he wanted me to pick him up AND he was telling me!!! This is the 2nd time he’s done this to me at the store. I tickled him and gave him a big hug and kiss since it was my turn in line and I had to put the groceries on the belt and check out. It was so awesome to see this kind of communication though. This is SO much more than he’s ever done before. Around the house, he does crawl up to us and look up and raise his hands until we pick him up, and if we walk away he cries big ol’ crocodile tears! haha Seeing him do something similar while we were out and about though, was a whole new level.

Not too long ago, I arrived at Aileen’s school to pick her up and I got Braxton out of the car, as we walked in the school, he put his little face right up to me and I felt his lips on my cheek. He caught me by surprise and when I turned to look at him he flashed me his big smile. It was the sweetest and most heart melting non-verbal “I love you” ever. Seems like ever since I wrote the post about wanting Braxton to talk, he’s been doing more things to communicate with me. Kids can usually pick up on feelings and always seem to find a way to comfort you as if you told them exactly what was going on. Or perhaps, God is working through Braxton to remind me that everything is going to be ok. To just trust in Him and the plans He has for our life. Just because things aren’t exactly how I imagined they would be, doesn’t mean that things aren’t exactly as they should be. I know that everything happens for a reason, and although waiting for that reason to become apparent is often very difficult, I am reminded that the important thing is to cherish the moments now, to live in the present and let God take care of our future.

Today has been such a great day with Braxton. I see all of the great things Braxton is doing and my heart is just so overwhelmed with joy. The simplest things, like turning a page in a book, I now understand exactly how much work went in to that and how things like that we take for granted each and every day. Days like today make me hold Braxton as he falls asleep, and when he finally does I watch him and tears just stream down my face. Not tears of sadness, but tears of joy, so much joy, as I think about where he was and where he is today. To see him do all of the things so many led me to believe he would never do, is such a miracle. To realize that he IS in fact developing communication skills and learning to communicate with us is such an indescribable feeling. This little boy never ceases to amaze me, and I can’t wait to see what happens next.

Sweet little boy asleep in momma's arms <3

Sweet little boy asleep in momma’s arms ❤

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