June 23, 2015

Another Ryan update...

This fall Ryan will most likely start 3-year-old preschool with an Individualized Education Plan (IEP) because of his "severe communication delay."  A few weeks ago he was tested again, and although he scored very well on cognitive and social skills, his communication score fell well below the normal range for a child his age.

He talks. A lot. Mostly with vowel sounds. Or, he leaves out entire portions of a word, usually either the beginning or the ending, but sometimes both. For example:

Milk: ilk
Book: uk
Shoes: ooz
Cup: uk
Popcorn: uk-or
Daddy: addy
Blue: ue
Cookie: uk-e
Car: r
Blanket: a-e (blankie)
Thank you: a-oo
Yea!: A!

But, he can say some words very clearly. Like:
mama, OK, no, uh-oh, mine, bye, cow

Some things that children his age should be able to say, or have a word for, he has yet to attempt. Such as:
Grandpa, grandma, Rachel (his sister), dog or puppy, (for any animal but cow, he just says the sound they make), outside, up, down, yes 

When Ryan gets really excited, he sounds like a chipmunk. On crack. Often when he tries to ask for something or tell us a story all we can do is shake our heads in confusion because we have no idea what he is trying to say. 

Even with almost nine months of therapy, we know that Ryan (still) struggles with communication. However, we are confident that with continued intervention, he will one day overcome this set-back. What we don't know, or are not yet willing/able to categorize or define, is why. It's all very technical and confusing and tedious.  This article summarizes what he could be up against. If you take the time to read it, you will see why this entire experience is a bit....exhausting. 

This is also still hard to explain. And I continue to hear from well-meaning friends and relatives who tell me all about how child Y or son Z didn't talk until they were X years old. And honestly, I would probably be preaching from that choir too if I wasn't on this side of the fence. I knew nothing. Zero. Zilch. Nadda about childhood development until about nine months ago. And after numerous tests and hours of research, the only thing I really know for sure is that I'm thankful for three things...

1. Ryan's primary care doctor, high risk specialist, developmental disorders specialist, speech therapist, and Area Education Agency (AEA) team all tell us the same things. They don't give us conflicting information or disagree about his ability level or care plan. Can you even grasp how amazing that is? All of these people, with various backgrounds, agendas, and training, agree on the direction this ship is headed. That is no small act of God.

2. We are so very lucky to live where we live. We have easy access to amazing medical professionals and live in a nationally recognized school district. I mean....wow. Just...wow. I cannot imagine facing this battle without the support we have from both of these resources. The educators and care givers that we get to work with are greatly appreciated.

3. As frustrating as this is at times, I have to remind myself that we are truly blessed. Ryan has had a tough few years but, thankfully, each obstacle has been one that we could overcome. He is a happy, healthy, silly little guy. His giggle lights up a room. He is curious and smart and wants to learn. His eyes sparkle and his run (belly first) makes us love him even more. He likes cars and trains and puzzles, and he loves to snuggle with his mommy and his giraffe. 

So, the saga continues. In late July we will know if Ryan is eligible for an IEP. If so, our special little guy will be off to school...at the tender young age of 3. 

Do they even make backpacks that small?


  1. Sometimes it takes a village. I am incredibly blessed to be part of the village to support Ryan. He is very intelligent. We just have to figure out a way for him to communicate effectively so that all of us know how intelligent he really is! What a wonderful advocate Ryan has in his insightful mommy!

  2. Thanks Bill! You're one of the people that I was referring to. I'm so very thankful to have you as an advocate and supporter of Ryan's education.