Tag Archives: speech

When All the Hard Work Pays Off

Braxton surprised us all today.

Braxton Using 2 IpadsUsing his talker, he told us he wanted to play his ABC Game. We gave him his dedicated play iPad with the app and had his talker next to him. The game showed the letter B and the animated image that goes along with it. Suddenly, Braxton reaches over to his talker, opens up the alphabet page and finds the letter B. We all halfway thought it was an accident but reinforced it anyway “Yea that is a B, good job, Braxton!” Then, the C comes across the screen and again Braxton goes to his talker and finds the C. Then Braxton skips ahead a few letters but goes back to his talker when he recognized a letter. We screamed and cheered like our favorite team had just won the championship.

Braxton got through the alphabet and correctly identified about 8 letters completely on his own, completely unprompted, and quite intentionally. We had him go through the alphabet a second time and I caught some of it on video, again he identified several letters. That was not what we were working on in speech or the current activity, but a HUGE milestone that we would have never reached if he only had a limited program with a few words or phrases available to him.

 

This taught me a few things and also reinforced some of our current ideas about AAC.

  1. He is paying attention when we teach.  We have been working on using the iPad not just for requests, but to talk about what is going on around us and what we see. Often, when Braxton is playing with a toy or an app on the iPad, I use his iPad to show him the object is also on his talker and he can tell me things about it, or just identify it. I just want him to know that he has that word to express. I show him the word, I guide his hand so that he has to push the button to speak the word. Sometimes he is interested and sometimes he looks the other direction with a big grin purposely defying mom or his speech therapist. But, today, he did exactly what we have showed him, but completely on his own. That’s Braxton for you, he will do things when he is good and ready to do them and not a second earlier.
  2. We need two iPads. I have seen a few recommendations to support the idea that beginning AAC users should have two devices. One should be solely dedicated to communication, so that the user understands that this is a communication tool and not just another game or object for entertainment. The other can be used for learning apps and games. We have a school provided iPad and one that was given to us through DARS. Braxton has his communication app on both iPads, but uses the school one primarily for communication. We use the 2nd iPad to model and have back-and-forth discussions with Braxton using his app. We also allow free-play and exploration with the play  iPad and Braxton will often exit out of his game to open his speech app to say something and then go back to his game. Having two iPads available at all times eliminates the need to exit the app to discuss it or to discuss an unrelated topic while still enjoying a game or movie.
  3. Early AAC Users NEED a Robust Communication System.  After today, I think back to the early programs we used and even the first school recommendation and I realize that Braxton would not have been able to do what he did today with any other communication system we have used. Even Speak for Yourself required some programming, BUT the key is that I had ABILITY to do this. Some people choose to use the internal iPad keyboard to learn letters and for a while, I did consider doing this. However, with Braxton’s limited fine motor skills, he kept opening the keyboard when he was trying to access a word, so I disabled the keyboard. I know that pre-literacy skills are important and that his class focused on a “letter of the week,” so I decided to create a page on the device specifically for the alphabet letters. Boy, am I glad I did! We wouldn’t have known otherwise that Braxton knew and recognized his letters! Thanks to the “Babble” feature in Speak for Yourself, Braxton has access to ALL of the words on his system and not just the few words we have open. In Babble, I have learned that Braxton knows more than we thought, as he finds new words and often uses them correctly. Again, not something that was possible using more limited communication apps. Having access to a robust vocabulary means that Braxton is able to show us what he knows.
  4. Let the AAC User lead. When I am working with Braxton alone or even in Speech therapy, we often get caught up in trying to MAKE Braxton pay attention to us and follow our lead, that we forget that allowing the student to direct the lesson can also be extremely beneficial. If Braxton were a speaking child, many of our lessons would cater to the things he likes and motivate him. i.e., kids that love ‘Thomas the Train’ often have lessons or activities about trains to motivate their speech and help them reach their goals. Sometimes we fail to remember that children who cannot speak also have likes and topics that motivate them. We had every intention of working on identifying Body Parts today and Braxton was having none of it. When he reluctantly cooperated, we rewarded him by letting him choose an activity. He chose the ABC game and consequently showed us that he recognizes letters and understands how to use his device properly. Had we made him stick to identifying body parts today, we wouldn’t have reached this milestone. It’s okay to sometimes let go of the plan and see where the user takes you; they just might surprise you!
  5. Re-inforce Communication as if it is Intentional, ALWAYS. I read something a while back that stuck with me. I follow so many blogs and pages about AAC that I am forgetting exactly where I saw this, but I’m pretty sure it was on Dana Neider’s Uncommon Sense Blog Page.  Someone had asked a question along the lines of  “How will my child know this app is their voice?” and Dana bluntly responded, “When you start treating it like one.” She wasn’t being rude or anything (at least that’s not how I took it), but at that moment I thought, “She’s absolutely right.” How else is a child supposed to learn that this is a tool to help them communicate? If we constantly say “Oh, that’s not what you meant” and direct the user to ‘say’ something else, or worse, if we ignore the user altogether. When a child is learning to speak and they babble “ma ma” or “da da,” what do we do? We immediately respond, “That’s right I AM momma” or “Are you looking for Daddy?” The child then learns that “ma ma” or “da da” will get your attention and that’s how they learn ‘mommy’ and ‘daddy.’ When an AAC user hits a button, we assign meaning and help them learn when we respond appropriately. Braxton ‘accidentally’ found hugs on his talker, and when I responded by saying “Oh, you want a hug” and gave him a big bear squeeze, he quickly learned what that button meant and that he liked it, so it’s now his favorite request. Even when Braxton is playing or accidentally opens Babble, I will talk to him about any word that he opens and his face lights up as he realizes I am listening and will either find the word again or say something else, like ask for a hug, once he has my attention. Avoid thinking your child is ‘accidentally’ saying something and always treat it as though he purposefully saying something so that you can help to assign meaning. THAT is how he learns it is his voice.

 

Moments like today show me that what we are doing is working and it was the right path for us. It is easy to get caught up in the work and feel like you are not making progress, but when the day comes that everything falls together just right, there is no greater reward.  I am so proud and so amazed at the progress Braxton is making with his Communication App, Speak for Yourself. I will openly admit that some days we are not the best at using the app, modeling, and following through, but no matter how often we use it, it’s available and Braxton now understands it’s purpose. I love seeing him figure things out and using the skills we have worked so hard to achieve.

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The Gift of Speech

I’ve often heard, “You spend your child’s first year teaching them to walk and talk, and the rest of their lives telling them to shut up and sit down.” – and yes, I thought to myself that is SO true! Until…I had a child who at almost 2 years old still cannot walk or talk.  Having a child with special needs causes you to completely re-evaluate everything and learn to appreciate all that is so magical about life.  Your child won’t stop gabbing about their favorite toy? Keeps demanding their favorite movie? Won’t stop climbing the furniture? Keeps you in shape by making you chase after him? I ENVY YOU! I WISH my child would say ANYTHING at all that is coherent.  I WISH my child could run and explore his little world.  I try not to dwell, but I do have days where I hold Braxton while he is sleeping and just cry thinking about all the things he should be doing but isn’t.  Or cry thinking of how far he has come.  Of all the things I wish he could do, I wish he could speak.  This poem beautifully captures that sentiment:

Sometimes when he's sleeping....

Sometimes when he’s sleeping….

 

Wishes in the Dark (for Abby) ~ copyright 1999 by Lisa Esmond
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Sometimes when she’s sleeping
I can see in my mind’s eye
the little girl I thought I had,
the one who said good-bye.

Sometimes when she’s sleeping
hands folded by her cheek
I close my eyes and see before me
a child who can speak.

Sometimes when she’s sleeping
she seems so whole and well
I can’t believe she won’t awaken
with dreams of which to tell.

Sometimes when she’s sleeping
and the tears in my eyes overflow,
I steal what kisses I can in the dark
and wonder what joys she will know.

Sometimes when she’s sleeping
and my eyes ache with tears unshed,
I pray she’ll always be full of peace
as she slumbers in her bed.

Sometimes when she’s sleeping
I can almost hear her say
“I love you, Mom, with my heart
and my soul, each and every day”.

But always when she’s sleeping
I am full of pride
at the miracle that is my daughter
and the perfection that is inside.

What I would give to have Braxton look up at me and call me “Mama” or walk up to me just to say “I love you.” I don’t know if that will ever happen.  I believe in my heart and hope with every fiber of my being that he will, but at this point I just don’t know.  He is babbling and making lots of sounds, but despite all my efforts, none of those wonderful sounds will form in to the magical words I’m longing to hear.  I know he loves me, without a doubt.  But there is really something special about hearing those three little words.  What happens when your child doesn’t have the words to say what you want to hear? You have to learn to read their signals instead.  The eyes can truly say so much.  There are times I play with Braxton, or catch his attention and he makes eye contact with me and his little eyes light up and a smile flashes across his face and my heart melts.  There it is.  That’s my “I love you” and it is ever so special to me even though he can’t yet say the words. I can feel it.  I feel it deep within my heart.  One day, he WILL say those special words, and that day I may not be able to hold back the tears or ever forget that moment.  That is one moment I will hold on to for all eternity.

Until that moment comes, we cherish every day and learn to communicate by taking our cues from Braxton.  We are open to the possibility of Braxton needing an assistive technology device to speak to us.  We are also taking sign language classes so we’ll have a definite method of communication should Braxton not learn to speak, or should his communication device not work if we take that route.  Communication is fundamental and it’s important to us to be able to communicate with Braxton by any means necessary so I’m very excited to be taking sign language classes and hope with all my heart Braxton learns to speak or sign very soon.

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Nothing Like a Father’s Love

Is that not the sweetest?

“I aint gonna lie..seeing that my son actually hears me when I talk is better than anything else I have experienced. He turns right away to me and smiles all big :)” – Dad (Joseph)

If that doesn’t melt your heart, then what’s wrong with you?!?! Haha just kidding. But really though, I love the bond Joseph and Braxton have with one another. There is truly nothing sweeter than seeing a father and son have a love like they do.  Joseph is gone every other week, and when Brax was first born he would tell me that he was worried Braxton would forget him or not know who he was.  Let me tell you, this little boy KNOWS who his daddy is!! The second Joseph walks in the door Braxton’s face lights up. When he’s right in front of daddy he’s constantly reaching out to his face trying to kiss him or eat his face! haha

Braxton got his hearing aids on Monday afternoon while Joseph was at work.  Joseph came home Tuesday night and so Wednesday was Joseph’s first full day with Braxton. 🙂 When he’s home from work he keeps Braxton at home instead of sending him to daycare. [What a great dad!] Joseph said he really noticed a difference in Braxton and his hearing.  He was much more aware of his surroundings and would actually turn in the direction of where sounds were coming from.  Before, we’d make a sound on his left side and he might hear it but he wouldn’t turn left, he’d just look around trying to figure out what it was and where it came from. Now he turns directly toward the sound. Yayyy!! Progress!  While I’m at work, I see this status update from Joseph: “I aint gonna lie..seeing that my son actually hears me when I talk is better than anything else I have experienced. He turns right away to me and smiles all big :)” and it made my heart smile.  He got to fall in love with his son all over again.  It’s a whole new world for Braxton, and there is so much for him to experience.  I’m glad he can finally hear the man he absolutely adores.

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A Step Back

Well, the saying goes…”2 steps forward, and 1 step back.” That’s been the case with Braxton since the beginning.  He accomplishes something great or we get good news, and then all of a sudden something isn’t right. =/

In the week or so before we ended up in the hospital with pneumonia, we noticed a decline in Braxton’s appetite.  Just so you know where he’s fallen from. Braxton was on breastmilk for 10 months (yes, I pumped all that time for him) and then on Similac Advance Formula for the last 2 months of his first year.  He was up to taking 6 ounces, 5 times a day.  He has the G-Tube, but we offer him a full bottle and let him drink what he will, then we put the rest through his tube.  He was drinking anywhere from 4-the full 6 ounce bottle ANNNDDD even eating a FULL jar of pureed baby food 3 times a day…no you know where all his rolls came from! Hehe Well at his 1-year birthday his GI doctor switched him over to Pediasure instead of whole milk.  Since Braxton was not eating a “normal” diet for a one year old the Dr did not want him to become malnourished and start losing weight. Pediasure would give him all the calories he needed plus all the vitamins and nutrients he needs. Anything we gave him above that would just be extra and useful in preparing him to learn to eat on his own.

At first, Braxton was throwing up EVERY feed as soon as we switched over to Pediasure.  Turns out with the higher calorie content of Pediasure, it was like we were overfeeding him compared to the formula he was on previously.  Basically it was like we had jumped from 6 ounces to 8 ounces of formula. Well naturally that would cause him to throw up….but I’m afraid from this point on the damage was done.

We played with the volume a little bit and gradually worked him back up to the 6 ounces 5 times a day. But, he stopped taking the bottle and stopped eating the pureed foods. 😦 We got him up to drinking about 3 ounces but still he would only take about half a jar of baby food as opposed to the full one he was getting before.

Well before the hospital stay, he pretty much stopped eating altogether.  We had to put his entire feed through his G-Tube and he wanted nothing to do with the pureed foods.  Working with our speech therapist, we decided that because of all the vomiting he had done that his throat was probably sore and it was actually hurting him to eat. As he began to associate the hurting in throat or nausea with feeding, he just decided to stop eating.  We will eventually stop doing something that causes us discomfort or pain, and that is what Braxton did.  Then he ended up in the hospital and didn’t eat for 3 days [he was on IV fluids getting the fluids and electrolytes he needed, but no food].  Now, Speech therapist says that in that short time it could be that his stomach shrunk so the 6 ounces we are giving has again become too much for him. Blah. So we’re back down to 5 ounces and gradually working back up to 6.  Thankfully the 5 ounces is staying down, but he seriously just wants absolutely NOTHING to do with the bottle or food.  We’ve only been able to get him to take mayyybe an ounce of his bottle, usually half an ounce and only like 4 bites of food.  This is a HUGE regression and not a good thing at all.  😦 He’s also been teething for what seems like FOR-EV-ER! He had a corner of tooth poking out, but it’s gone back into the gum. His gums do like a bit swollen and he’s gnawing on everything he can get his hands on, so this could also be contributing to his lack of appetite, but we don’t know for sure.  So many variables here.

Between us and the speech therapist, we are at a loss.  Pretty much out of ideas to work him back up to eating like he was before.  Called his GI doctor today, but haven’t heard back.  He would be the one to give us other suggestions or make some kind of change.  We see him next Monday anyway, but I thought this was enough of a concern for him to address sooner rather than later…he must not think so or he would have called back. UGH.

Uber frustrated.

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Braxton gets his Hearing Aids

Today was the day!! I have to admit, I was hoping that as soon as we put the aids on his little eyes would light up and he’d just start talking away…unfortunately that didn’t happen.  The Audiologist explained everything to me as best she could, but I’m more of a hands-on person. Experience is the best teacher, so it’s going to take some time for us to get the hang of it all.  Hey, I figured out his G-Tube, I’m pretty sure I can handle this too.

So, the entire time we were there waiting Braxton was just as wiggly as he could be! He was sitting in my lap just rocking back and forth and smiling like crazy.  As soon as the audiologist put the aids in, he just stopped.  He could obviously tell something was different, but he didn’t quite know how to react. Luckily, it wasn’t to just start shrieking and crying uncontrollably *whew*  He started looking around and just taking everything in.  Thankfully, he did not immediately grab for his ears and try to pull them out.  I really don’t foresee that being a problem with him, but only time will tell.  We stayed with the audiologist for a little while to make sure I had all my questions answered.  The entire time, Brax was just as wide-eyed as he could be.  Big sister came with us to help take photos and video, but  turns out a 6 year old isn’t the best photographer! There are more pics of herself than Brax on my phone! You can see her handy work below 😉

After the appointment, I had to go back in to work and took him with me to wrap up the day.  He was pretty calm there, just continued to look at his surroundings and really just take everything in.  He even took a little nap and didn’t really startle awake with normal office noise.

Anyway, this is a VERY exciting time for us all! This is the first step in really advancing Braxton’s speech.  Hopefully the aids bring him up to “normal” hearing and we start getting some meaningful words out of him…I can’t waitttt!!! He’s going to be talking up a storm in no time…I’m sure of it!

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“Little man with his hearing aids! I’ll update more later, but we finally got them and he immediately just started looking around. You can def tell he is hearing things he hasn’t heard before and is more aware of his surroundings. I’m super excited for him!! :)”

Here is Braxton and his aids, which are surprisingly much smaller than I thought they would be!

Braxton with hearing aids

Braxton wearing his new Phonak NioS H20 Hearing Aids

A few more pics…mostly taken by a 6 year old haha

For more detailed information on the hearing aids, see this post.

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