Subtle Changes and Big Transitions

Many of my friends and families will refer to "cognitive leaps" in describing the explosions of development they see in their children. I can't say that I have truly witnessed these sudden bursts of growth in Cyrus because development happens so slowly and subtly that I often don't notice any change at all. But occasionally, it will hit me and I will ask my husband - have you seen him do this? Is this new? I have to ask because I'm not completely certain the behavior is new or if I just didn't notice it before.

Cyrus just turned three last week, and as always, I find myself reflective and taking stock of what Cyrus has gained this year. Just recently, he seems to have become responsive to touch - and by that, I mean he likes it! You can ruffle his hair or touch his temple and he'll sometimes smile! Before he would turn away or make an irritated sound. He's gotten better at giving hugs - they seem more intentional in any case.

He has opinions! He will take that first big gulp of a baby food that we know he doesn't care for, but that we can get him to eat anyway, except now he'll make a face of disgust - like there's this whole "Ew!! I don't want this one!" and he'll still eat it, but he will take his sweet time with it in a way he didn't used to. He's gotten a lot better at avoiding taking his medicine, employing strategies such as gurgling to prevent him from swallowing it. Though I admit this is a talent, I'd have sooner wished he hadn't developed, it's still good to see him complain!

He vocalizes so much more often. Kyle recently said that Cyrus makes five distinct sounds and he knows what four of them mean. But in general, there's a more consistent call and response pattern that takes place so we can have "conversations"! And I am finally confident that he knows his own name because when someone says it he turns towards them for a second. He even knows some of his peers' and teachers names as he will look towards them when they're names are used as well.

As of his third birthday, Cyrus is 3 feet 3 inches tall and 30 lbs! Three is apparently Cyrus's magic number at the moment! And three is also an important birthday in the education world.

A few weeks past we attended our first IEP meeting to make the transition from early intervention services into the school system. Our first meeting was a very positive experience where our concerns and goals for Cyrus were heard, and as a bonus I got to learn about language assessment for young non verbal children. Cyrus has mastered all communication skills of about a 3 month old, and has scattered communication skills from 3-12 months old. And has demonstrated no verbal communication skills beyond that point. Cyrus was placed in a sheltered special needs school and he will have six classmates total. He will continue with OT and PT, and have Speech Therapy added into the mix. And he will spend his day on motor development and learning alternative communication strategies as before only now he will be spending multiple hours on it each day. Cyrus also qualifies for a 1:1 nurse who will accompany him on the bus, administer medication, feed him, change diapers, and of course watch for and respond appropriately to seizures while he is at school.

We have learned that agreeing what was needed was a lot easier than actually getting it all set up so he can start! Before Cyrus can start, we have to have reports and orders from all his specialists with instructions for his nurse. And while I am great at filling out paperwork in a timely fashion, getting other overworked pulmonologists and ophthalmologists to fill out their portion so that my child can go to school is a slow and frustrating process... Our neurologist was fantastic - she wrote out a seizure action plan within twelve hours of my request! The pulmonologist however feels unqualified to comment as Cyrus hasn't seen him in over a year and is completely booked for the next few months. Guess it's time to get a new one! Ophthalmology never responds to my voicemails, messages, or requests for an appointment. May need a new one of these as well. And we didn't even have an audiologist (but we fixed that! Turns out Cyrus can totally hear, but has excessive pressure in his left middle ear, that has probably been the source of his irritation for the past few months...). Oh! And the school needs to actually a hire the nurse, and who knows how long that will take.

Needless to say, it's been a slow process, but the school principal and especially the school nurse (she came to my school during my prep period when I couldn't meet with her at hers to answer all my questions!) have been absolutely phenomenal in offering guidance and support! So while it has been an overwhelming and daunting task, we're making progress and truly excited about Cyrus's new placement.

The only bittersweet part of our transition so far has been having to say good-bye to Cyrus's teachers. His Early Interventionist (EI), Linda, came for her last session the day before Cyrus turned three. She is the therapist that gave me hope again when Cyrus was only five months old by showing me that he could see and discovering what he could do, rather than everything he was missing. She was the best at reading him and being just endlessly patient with him. We are going to miss her so much! 

And today, Cyrus graduated from his non-verbal pre pre-school class. They did the adorable little ceremony (video linked here) where they gave him a graduation present, a graduation hat, and then sing their normal good-bye song except the normal lyrics of "We'll see you again next time," turns into "We'll see you again some day." And yes, that simple substitution is enough to make me cry. Nicole is his favorite teacher - she communicates with him. She asks him questions and lets him make choices. I have no doubt that he loves her so because he doesn't have to struggle quite so hard to tell her what he wants the way he has to with the rest of us. That around her he feels seen, heard, and understood. She is a difficult person in his life to say good bye to. And he has other aides and therapists here as well he's connected with - Jenny, Elizabeth, and Vicky who have played with him, found new ways to make him laugh and smile, and helped his develop that critical core strength and head control. It has been an amazing class for Cyrus, and I hope he finds as good of a niche in his new one.

We've been a little behind in his actual birthday celebration, but we plan to take him to the local Rockin' Jump Trampoline Park this weekend rather than throwing a party as we figure he will just love all that extra bouncing.