Say What? – Six Months Later

April 9, 2018 apraxia of speech, Brandie, early intervention, Education, hearing aids, hearing loss, sign language, speech delay, speech therapy, undiagnosed SN, velopharyngeal Insufficiency 1 Comments

Six months ago, I shared about our journey with Caston through his surprise diagnosis of hearing loss and severe speech delay.

Six months! Half of a year. It seems like just yesterday that I sat down to write about our experience.

Since then, I’ve seen so many parents with questions and concerns relating to speech and language delays, and it feels like the right time to share our progress and challenges with you all.

In the past six months, we have continued to work diligently with our speech therapists and at home. Caston has since “aged out” of our county’s Early Intervention program, and he has transferred into the local school district for his therapies. Although he does not attend preschool right now, he does go to one of our local elementary schools once a week for speech and once a week for physical therapy. He also continues to attend weekly private speech therapy appointments at our children’s hospital.

To us, Caston has made some amazing progress in speech. To anyone outside our immediate family, it probably doesn’t appear that way. Six months ago, he was only able to produce a couple of vowel sounds, Ms, Ns, Ls, Hs, and Ys. He made no attempt at any other letters, and until very recently, he would simply shut down when he was pushed to repeat or reproduce sounds like B, P, or D.

Most of his communication was through sign, and he still relies on sign language a lot. However, he has become much more adept in combining the signs and word approximations. He has added lots of words to his sign language repertoire, including colors and other descriptors, signs for different family members, and many other words.

Although we are now facing a lot more tantrums and meltdowns because of his desire to communicate his ideas, we are encouraged even in the midst of our own frustration. We know that his tantrums mean that he both understands all of us, and he also has a strong desire to reciprocate communication. Tantrums mean that he is not satisfied with a lack of communication; therefore, he tries harder. In some ways, his frustration fuels his progress.

We are also encouraged because, most of the time, we are now able to shut down the tantrums quickly and prompt him to speak instead. We both sign and say, “Stop. Use your words. What do you want?” Then we model for him, “I want…” This acknowledges to him that we do hear him and know that he wants to tell us something, and it encourages him to calm down and use a three-plus word phrase to communicate his needs.

Today, for example, he tried to talk me through a series of sing-songy hums. Previously, we would have “counted” this as communication because that was the most he could give at the time. We would have guessed what he wanted by offering a plethora of snacks, books, or toys. Eventually, we would have either hit the jackpot and guessed the right thing, or he would have become bored and settled for something that we offered as opposed to what he actually wanted.

Today, though, the tantrum started ramping up when I didn’t understand him the first time. I immediately shut it down with my go-to phrase. “Stop. Use your words. What do you want?” Then he signed and said, “I yan uhhh eeee Meemah Mahhhhh.” Translation: “I want to read Mickey Mouse.” I almost cry writing this because this is such amazing progress for him.

Still, some days, it’s like a really bad game of charades as he grows older and has more ideas that he wants to express. We are approaching the two year anniversary of his adoption soon, and to be very honest, I did not think we would still be in this challenging place of somewhat limited communication.

Previously when I saw “speech delay” in a child’s advocacy post (which was not a need that was identified for him prior to adoption), I would have thought, “No big deal!” Well, honestly, it is a big deal. I really thought that if I just worked hard, it would all resolve quickly.

While I’d like to say that all Caston needed was love, time, and attention to overcome his speech issues, that has not been the case for us. He has made phenomenal strides, but we still have a long road ahead. Caston progresses in his own time, and no amount of my mental willpower on his behalf or my own silent mimicking of the speech therapist’s words as I sit in the back of the room has any effect on him during his speech sessions.

I can’t control it, and that’s a hard thing to admit.

He is still unable to reproduce any pressure consonants like P, B, D, T, K, and G. Now that he is attempting to say words with those sounds, though, (which is progress in itself) we are seeing that they all come out as sounding like Ns. “Daddy” is “Nanny.” “Bunny” is “Nunny.” At Target a few days ago, he shouted, “Eee-uhh ain,” excitedly when he saw some Easter eggs. Personally, I was thrilled with that, and I let everybody within three aisles of us know it. Three unique sounds and syllables combined!

Six months later, we still have not been able to perform the Multiview Video Fluoroscopy to determine the degree of his velopharyngeal insufficiency (the inability of the soft palate and throat to close the nasopharynx, allowing air to escape through the nose during speech). He is not consistently cooperative in reproducing letter sounds and words on command.

Parents of kiddos with speech delays, I get it. This is hard stuff. This is such a long road.

I understand the tiny pangs of jealousy when you hear another child who is also speech delayed speaking far more clearly than your own sweet baby. You know she has it in her, and it just hasn’t emerged yet.

I understand that feeling of your heart sinking when a stranger awkwardly ends a conversation after asking how old your child is. You know that your kiddo is super smart, kind, and funny, even if he doesn’t have the ability to convey it to others yet.

I understand that punch-in-the-gut feeling when your other kids finally have the realization that their sibling’s speech isn’t typical for her age.

I understand the fear of sending him to preschool, knowing you won’t be there to translate for him.

And, yes, I understand that mental groan you make when you pull out those apraxia flashcards, again, as your child wails in protest.

But I want to use this to encourage any of you mamas and babas out there who are struggling with your child’s speech delay. Even if you’re still in the midst of communication challenges, your really bad game of charades is still light years ahead of what he would have been doing without your intervention in his little life. Even though the progress is painfully slow, your kiddo’s communication is improving every single day. Then and Now are better measures than any milestone chart you can find.

I still marvel at where Caston is now versus two years ago.

Zero sounds or words then.
Multiple word phrases now.

No communication then.
Numerous signs and word approximations now.

One day this moment will be the Then. I can’t wait to see what he does to amaze and excite us all next.

One response to “Say What? – Six Months Later”

  1. Shawna Tunnell says:

    This is our daughter. 100%. My background is speech communication disorders…although I decided to be a stay-at-home mom instead and never used it…but I thought “speech delay” would be simple stuff. No. We have a long road ahead of us as well. Thank you for your story.

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