Kiah’s Speech Update

I’ve had this post sitting in my blog drafts for nearly a year now. I’ve never felt like I have the right words at the right time, and then by the time I think through what I want to say, the circumstances have changed and the update isn’t even accurate anymore.

For those of you who need a little backstory, you can read these blog posts:

Shouldn’t He Be Talking By Now?

3 Things

Hezekiah James is TWO

Just before Kiah turned two, we had him evaluated for developmental delays. An entire team of people came to our house and played with Kiah for the evaluation. He was (and is) a shy child, but this didn’t overwhelm him too much because they brought a lot of fun things to do! After his evaluation, they showed us his scores. He was well ahead of his average age group in both fine motor and gross motor skills. He was right on track in his communication ability, but he was 11 months behind in his speech and language. Because of this, he qualified for services from a local group called Help me Grow. Their services were completely free until he turned 3. We had the most wonderful developmental therapist who would come to our house 2-3 times a month to work with Kiah. Honestly, she worked more with me than with Kiah! Ha! She would play with Kiah, observe him and his progress and then give me lots of tips and tricks of how I could be helping him along in his speech and language development. We ALL loved Ms. Angela.

After Kiah had been in the program for a few months, he had a second evaluation to track progress and update his action plan. At that meeting, the speech and language pathologist brought up Childhood Apraxia of Speech. The issue with Kiah’s speech and language was that he couldn’t seem to SAY the words, even though he knew them in his head. CAS (Childhood Apraxia of Speech) is a speech delay that is defined as the inability to speak despite having the desire and physical ability to carry it out.

For example, Kiah could say “dog”. We had heard him say “dog” many times. But then suddenly, he wouldn’t be able to say “dog”. He would stumble and stutter over the word and have a complete inability to get the word out of his mouth. This happened with almost every word in his vocabulary, whether it was common/simple or not. He wasn’t LOSING words or vocabulary, because the very next day he would be able to say the word again. But in the moment, he was stuck and could not say the word that he wanted to say.

He was tested for his hearing, for his responsiveness and several other things. The conclusion was that nothing was diagnosable wrong, but something was not right. Everything seemed to point to CAS. One of the difficulties of CAS is that it is rarely diagnosed before age 4. Oftentimes, a child will “outgrow” it, or will simply find their stride and never receive that diagnosis. Many children have to work hard and eventually are able to control their speech despite having a CAS diagnosis. And many children are never able to speak. KNowing all this made it hard for us to know how to proceed. It was hard to define how serious Kiah’s case might be and when or if he would be able to work through it. There were several months that we felt that Kiah would never speak.

I have described CAS to others as a “brain stutter”. If you know someone who stutters, you know how hard it is for them to say the word that is literally on the tip of their tongue. In Kiah’s case, he does not have a stutter, but if you watch him try to say a word, it is as if he is stuttering with no sound. His brain knows the word, and his mouth has said the word before, but there seems to be a disconnect between the brain and the mouth. His mouth struggles to form the shape of the word and his tongue just cannot get it right. This happens most frequently when he is excited or frustrated.

Kiah remained in the Help Me Grow program with Ms. Angela for a little over a year. Once he turned 3, he aged out. Just before he aged out of the program, he tested for preschool. In our area, if a child qualifies for an IEP, they can attend preschool for free.

Over the months that he was in the program, he began making great strides. He started to be able to say more words, and the words seemed to flow more easily from him. I remember the little moments of joy I would have when Kiah would shout a word or a phrase – we are SO proud of him!

Even though Theo and I felt like Kiah had made so much progress, he did qualify for an IEP and was able to attend preschool for free. During that time (October 2019), however, was when we were facing so much upheaval with moving and we never ended up enrolling him or sending him.

He is now 3.5 and speaks in FULL sentences….all the time. He has made so much progress and I know that it has not all come easily to him, as it may with a typically developing kiddo. We do not know if he ever did have CAS or if he does still have a mild case. He is still slightly behind in his speech and language, but if you didn’t know his history you would never now from interacting with him. He is attending preschool at CHESS when I am teaching, and he is loving the time that he gets to spend with his teacher and peers in a classroom setting (he doesn’t ever want to be dropped off, though!). He still sometimes has the “brain stutter” that I mentioned above- the words are in his mind, and his mouth is just not able to keep up with them. But this happens far more rarely than it used to.

I guess this blog post will come to a conclusion now. I don’t have anything profound or crazy to report. For about a year, we were very concerned and knew we might have a serious diagnosis on his hand. There was no miracle cure or change that we pursued, but Kiah did work incredibly hard to say the words that he wanted to say. We are now not as concerned, but so thankful for (almost) every word that Kiah says!

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