Tag Archives: nonverbal

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 Being His Voice Hurts

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

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

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

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

 

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

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

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

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

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

So, how did I end up answering the question?

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

When I grow up

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Recovery Road

Today is Day 4 of recovery.  If you’ve been following us on Facebook, you will know that it’s been a rough couple of days.

Sleepy BabyWe got home on Wednesday just after 10 am and Braxton played for a little bit and then settled in next to momma on the couch for a nap.  He was extremely sleepy most of the day, but he was also very restless.  He would sleep for about 15-20 minutes at a time, wake up, try to get comfortable and then drift off to sleep again.  Thankfully, he slept alright through the night only waking twice in pain.

Yesterday, I thought he was starting to look better.  He ate a little bit of Yogurt and Applesauce which I’m sure helped his throat.  He even played a little bit more than Wednesday, but he was still very sluggish and lethargic at times.  I decided to stop giving him the narcotic the doctor gave us and just try to manage his pain with regular Tylenol and Ibuprofen.  I felt like the narcotic was making him so sleepy even though he has had no issue with it when given after other surgeries.  I didn’t see an immediate improvement, but I gave it some time to get out of his system completely.  He had another good night Thursday and even slept late today!

SleepyWhile today has certainly been his best day, I’m still concerned about his low points.  He will play and then just lay down wherever he is and try to fall asleep.  I will move him next to me on the couch and he sleeps for a little while and then he wakes up like he doesn’t know where he is.  He looks very out of it and hasn’t even had the narcotic in over 24 hours at this point.  I have placed him on my chest and he will just sit there for quite some time without even falling asleep.  Occasionally, he does sleep and I just hold him until he wakes up. I’ve never seen him like this.

 

Our ENT’s office called earlier today to check in on him and I told them that he seemed pretty lethargic and asked if it was out of the ordinary.  The nurse didn’t seem to worry since he hasn’t had a fever and is having sufficient wet diapers.  She also warned that days 5-7 are the worst for recovery as the surgery site begins to heal and scab over.  So, it looks like we are in for a fun weekend.  The nurse said it’s not uncommon for children to complain of ear pain, neck pain, and just generally feel uncomfortable.  This is the point where it is frustrating for me to know that Braxton cannot express this pain and discomfort.  He has been so sluggish and I am fearful of keeping him on the narcotic only to make him more tired and out of it.  There are times when I can tell he is hurting by the face he makes so I give him extra cuddles and medicine if it’s time.  So, I’m thankful to have *some* clue, but I really wish it wasn’t a guessing game and he could tell me exactly what is going on.  Poor baby. 😦

This evening, Braxton is looking more like himself and playing and even laughing more which makes me very happy.  Braxton ate 8 ounces of applesauce today…yayyy!! It’s so nice to see a smile on his handsome face again.  I’m hoping the next few days won’t be so bad, but I’m preparing for the worst.  This is definitely the toughest recovery period of all the surgeries he’s had.  Even his hand surgery wasn’t this bad.  Keep praying for my sweet boy.

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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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