I’ve wanted to write this for weeks now but haven’t really known what exactly to say or even how to share. This is all so new for me that I’m not even entirely sure how to word it all, so bear with me. Hopefully I can explain in a way that makes sense.

Quayd had his speech evaluation in July, after many months of waiting to have an evaluation done. I had done just a tad bit of research on speech and language delays during the wait and had stumbled across a fairly uncommon speech disorder (not a delay) that sounded just bang on exactly like what we were observing with Quayd. Obviously with no previous experience with speech delays/disorders, I had to wait to see what the professionals would say, but I kept the name in the back of my mind. So thankfully it wasn’t too shocking at the end of his evaluation when the SLP said she was leaning toward this particular diagnosis, but that the official diagnosis couldn’t be made until we had multiple sessions under our belts. We are at the point now, 3 months later, where the diagnosis is official. Importantly, Quayd does not have any delays with language – meaning, he understands everything we say, can follow directions precisely, he knows exactly what he wants to say to us – the only barrier to communicating freely is an inability to produce clear speech.

Therapy happened to begin on Quayd’s 3rd birthday and he has gone mostly 2-3 times weekly ever since. Currently he has 2 appointments a week, one is virtual and the other is in person. The outcome for this speech disorder varies from person to person, therefore it is unknown what to expect for Quayd’s expressive speech over time. Nobody can say whether he will be able to speak clearly someday or how long it could take to see real measurable progress. Currently Quayd has very few words that we recognize and even then, they are distorted and rare. He HAS successfully said Mommy a few times now and it was absolute heaven to hear it!! Finally!! I was so overjoyed! It requires a lot of effort for him to say it, and therefore he has settled on calling me “Ma-ee”, which is still absolutely beautiful. It’s been a little over a month and I’m still getting used to hearing him address me by name. It’s amazing! He also has approximations recently for no, daddy (dah-ee), yeah, I, hurt (ur), fish (bur), more (bo), nose (bo), pee and a few others. I would say that without context, we understand maybe as much as 1% of what he is saying. With context, we can make out a little more of what he is trying to communicate. Maybe 5% and mostly in the form of approximations.

We have begun to implement “aided language boards”, which are laminated pages with common words and items that he can point to in order to tell us what he wants to eat, play with, how he feels emotionally, and what areas of his body hurt, what color he wants of an item etc. He LOVES his boards. We have a whole binder of them, and we add to them constantly. He’s started taking them with him when we go places. They have really helped him feel empowered and he gets upset a lot less now. He is also learning sign language. He is a very fast learner and picks up on signs with only a couple demonstrations. Quayd is desperately eager to be understood! (I’ve noticed at his appointments that how he communicates depends on who is doing the therapy. One of his SLPs does a lot of sign language with him and he primarily talks to her with sign. If he’s not sure that someone understands sign, he grabs his boards.) Next week he has an appointment to trial an “augmentative and alternative communication device”, which is to say, a tablet that he can use to speak with. If he does well with it, which his SLPs are very confident that he will, he will Lord-willing have his own device in the next few months, after training and insurance processes.

I could go on a ramble about my emotions regarding watching my child struggle and work so hard just to talk, but I won’t. I do let myself feel the feels for a bit here and there but I’m most beneficial to Quayd’s support when I am in positive focus mode. The emotions for me often center largely around worries about Quayd’s feelings concerning this difficulty, and his inability to share those feelings with me yet. We see him feeling sad and frustrated at times, and he is increasingly aware that people don’t understand his speech, to the point that he doesn’t attempt to talk to anyone outside of immediate family very often anymore. This is heartbreaking to watch. I am grateful for advances in technology, like the AAC talker. And I’m thankful for good old fashioned aided language boards and for sign language. Any form of communication is a blessing, and while the end goal is clear expressive speech, as long as Quayd is able to communicate with ease, I am happy and thankful and relieved!

I do have immense hope, moving forward. There ARE success stories in abundance, we’ve started therapy at a good age, Quayd has shown huge progress with the aided language boards and sign language. I believe he will learn and adjust quickly to using the AAC talker and maybe once the pressure is off, he can work more on his expressive speech. Having the successes of him saying “Mommy” and “no” and “uh-oh”, while being just minimal progress, it shows that he is working very hard and giving 100% to developing his speech. As he gets older it will likely get much easier to work with him, vs how it is now, trying to keep the attention of a 3 year old for an hour speech session. Yes, I do believe he will progress well. He has the full support of his family and brothers who love him so much and are above and beyond wonderful at helping Quayd communicate well. Whether they run to bring him his binder of words, or practice sign language, or play with playdoh together while making long vowel sounds, these boys have stepped up to the plate to make this journey a whole family support effort. I am so blessed to watch these loving brothers in action. Sweethearts, all of them. God is good!

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