Tag Archives: speech delay

The Sweetest Word

For 6 years I have waited.

I have prayed.

I have dreamed.

In my dreams, I hear your precious voice. I feel the joy in my soul and pride in my heart with every spoken word. But, sadly, I awaken to see you sleeping and I know that it was just a dream. Sometimes, I  wipe the hot tears of sadness from my face as I squeeze you tightly and wish one more time, that one day, I will awaken to the sound of your voice.

Last night was different. As I lay next to you knowingly wide awake, the two of us, I heard it. The first word. It was just 3 little letters in a brief, fleeting moment. It was slow and deliberate. I quickly pulled out my camera and asked you to say it again. You spoke the word, beamed with pride, reached out for a hug, and then slowly drifted off to sleep.

As the video replayed, my heart leapt from my chest and I felt the familiar feeling of hot tears rolling down my face, but this time…this time, they were tears of joy. Never has the word “Mom” sounded so sweet and meant so much. This time, I cried myself to sleep happier than ever.

Lest I think it was a fluke, today, I have asked you time and time again, and every time I hear you say “Mom”, my heart melts.

You have had many sounds for so long, but today was the first time they held meaning. The first time you looked directly in to my eyes and said what I have been longing to hear. The first time they were more than a button on your iPad. As I listened to your baby sister coo and babble, my heart hurt thinking she would reach this milestone before you. You have worked so hard for so long, and today, that hurt was replaced with a renewed hope that soon, we will hear all of the words you have been waiting to speak. All the words we have been waiting to hear.

 

[The following is compilation of videos I have taken from last night and today. The first video is from last night, when Braxton first said “Mom.” The other clips are from throughout the day and include us talking and making other sounds so you can see the differentiation between his sounds and the very deliberate, “Mom.”] ❤

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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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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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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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