October 27, 2014

Time for an update on Ryan...

Okay, so some of you have been seeing little snippets of comments I've made on facebook about Ryan and some of the things we're going through with him right now. Maybe it's time I finally fill you all in a bit more. Don't worry, his health is fine but we're just gearing up for yet another bump in his road.

A bit of background and reminders:
1. Ryan was born about 6 weeks early and spent two weeks in the NICU.

2. Before he turned 1 Ryan; was treated for a textbook-worthy case of eczema that pretty much made his life miserable, took medication for a horrible struggle with acid reflux, was hospitalized with RSV, and was not able to sleep for more than about 45-90 minutes at a time (day and night). So, basically he was in "survival" mode (and so where we).

3. At 14-months Ryan had his tonsils removed because we found out they were causing sleep apnea and making it really hard for him to eat (and sleep!).

4. Last November, things finally seemed to be looking up for him. He was healthy and happy and turned into a little sponge so he could take in everything around him.

5. Over the winter and early spring he started talking. His speech was fairly normal- understandable mostly to his caregivers. However, the number of words he attempted to say was right on target with where we expected him to be (a hair bit behind, which was all explainable and still on the "normal" curve).

When we took Ryan in for his 18-month appointment last March with the Pediatric Specialty clinic he scored a bit low on a few of his developmental tests, but we weren't worried. But, when we took him back in September he scored extremely low in communication, and a few other areas, and we became a bit more alarmed. His hearing was tested and he failed the first test but passed a few weeks later (hallelujah!).

Let's stop here for a second so I can address the comments that I know some of you are itching to make...

"My so-and-so didn't talk until he was three and he turned out fine."
Why I'm not interested in hearing this comment:
1. Ryan talks. In fact, he's got lots to say. But, he pretty much sticks to vowel sounds and very rarely, if ever, says anything that would be expected at this age, like ma'ma or milk or cup or puppy or cookie, etc.
2. Ryan used to say all kinds of things. Granted, they weren't always pronounced perfectly but it's been several months since we've heard many of the"first words" that he said last spring.
3. Children learn their animal sounds at a very early age, and Ryan was no exception...until now. All of his animal sounds pretty much sound the same, which wasn't the case 9 months ago.

"I'm sure he's fine. After all, "normal" has such a large range."
Why I'm not interested in hearing this comment:
1. Yes, he's healthy and that's good (and "fine"), but once your child scores at the bottom of a scale that measures "normal" (and he used to be in the middle) you can no longer sit around and wait to see if he'll "grow out of it."
2. Yes, the range of "normal" is large, but no, it isn't normal to stop making progress, or in some cases regress, in any area of development.

"But he can communicate. It's not like we can't understand anything he says."
Why I'm not interested in hearing this comment:
1. That's the thing though...we often can't understand him. We have no idea what he's asking for unless he can point to it. He has no way of asking us for things he can't see. For example, he used to go to the fridge when he was thirsty or open/dig through our pantry when he was hungry. He doesn't do those things anymore so we have to anticipate his needs and try to meet them since he can't ask us for help.
2. Ryan can comprehend much more than he can actually communicate. Put yourself in those shoes...wouldn't that be terribly frustrating for you?
3. Speech isn't the only area he scored low in. At this point, we're assuming he scored low in those other areas because of the speech barrier that he's up against.

"But he's such a happy, playful little guy. It's not like anything serious is going on."
Why I'm not interested in hearing this comment:
1. Yes! He IS happy and healthy. He loves to laugh and play and interact with people. He makes good eye contact, is social, and has no problems with his motor skills. What a blessing!
2. A word of advice...never insinuate that something bad, like scary, is or is not wrong with someone else's child. Just don't go there.
3. Some of Ryan's behavior is a bit questionable at this point. But, all of it can be explained by the fact that he's still got some catching up to do and, of course, that he's two. I won't go into details here so if you're wondering what those behaviors are you're free to contact me and ask.

So, what's the current plan?
Can I just say that I have learned a lot over the past few weeks. Ryan has had several assessments by various different offices and they've all been conducting their tests in a very similar way. I knew that children's brains are very different from adults, but I had no idea that what we often perceive to be "meaningless play" is actually an entire web of developmental motions, emotions, and actions. I can't explain what I've seen or learned but it is really quite interesting.

And dangerous...I know just enough about early childhood development to be dangerous to myself and others.

Anyway, the plan so far is this...
1. Ryan was approved for regular speech therapy sessions, which he will begin soon.

2. We just finished a round of testing with our local Area Education Agency and are waiting to schedule a meeting to go over the results so we can form an official plan (it even has an official name since this is a "state funded thing" but I can't remember what that name is). Once the plan is finalized, he will be in the state's Early Access Program until he's three. Once he turns three they will reassess him to see if he is done with the "official state funded plan thing" or if he needs to continue on in a different "state funded plan thing" for kids his age.

3. We are also waiting for him to have some additional developmental testing at the hospital in December. We're hoping that as the appointment gets closer we'll realize that it is completely unnecessary so we can cancel it. That appointment kind of scares me so I would rather not have it looming on the horizon.

The buzz word as of today is wait. I hate that word. I hate it because, of course, who likes to wait? Plus, when you're waiting that means you're not "doing" and when you're not "doing" you also aren't making any progress or learning anything new.

So, there you have it. An update on where we're at right now with Ryan. Just another bump in the road that seems a bit daunting at the moment, but will look a whole lot smaller once we can turn around and see it from the other side.

Ryan and Dan...

Our daycare provider Jane, and her husband Dan, have become like family to us. Jane has been right there, front and center, for over four years, facing our struggles with us and celebrating our joys. And when Dan comes home from work the kids run to meet him, just as they do when they see their Grandpa Nelson.

Jane sent me these pictures that another daycare parent took of Ryan and Dan playing in the leaves, and I just had to share them. These two are such good buds.

Ryan looks so teeny, tiny in that big pile of leaves.

Our little Bubby Bear. 

This picture almost put tears in my eyes.
I can hear their laughter as they have all kinds of fun together.