the long and winding road

Apparently we weren't in deep enough after all. After two weeks of waiting for the phone call from Early Intervention to set up Garrett's IFSP meeting, I received a form letter in the mail essentially telling me that they'd changed their minds about Garrett's eligibility.

I know -- I know! What the heck, right?

Aside from the fact that I was confused and disappointed -- devastated, really -- about this sudden and unexplained change of heart, I was also angry, and, I think, justifiably so. In what way is it right for them to give their word and then go back on it? And why didn't they have the basic common courtesy to call me to share this news? They had to resort to a form letter?!

I called my service coordinator to try to find some answers. Unfortunately, she couldn't tell me much about the why this happened except to say that upon closer inspection of the numbers, Garrett wasn't actually eligible. (My only guess is that either there was a lack of funding, which is always a possibility with government-run services, or perhaps he is considered borderline, which is a tricky place to be, as children who are borderline are often the first to fall through the cracks.)

Two things, however, did come of our conversation: 1) She did tell me that this decision was not yet final. They are still waiting for a written statement from the evaluation provider detailing why they believe Garrett should receive services; and 2) She went ahead and put in a referral for Garrett to get the paperwork started for CPSE, the program run by the Board of Education that would allow him to get speech therapy through the public schools once he turns three. I am not extremely hopeful at this point that EI will come through, but at least I'm happy that they can point me in the right direction to get him help later this year.

To say that all of this upset me is to put it mildly. It's been a week since the punch was thrown, and I'm only now feeling calm enough to write about it. I think that what is troubling me the most now is not so much that Garrett will likely not be given help through EI, but that he'll have to wait a lot longer to start getting help of any kind. You can keep your comments of he'll be fine eventually and there's not much a speech therapist can do for him at this age anyway to yourself because even if both are the case, it doesn't change the fact that the next several years are going to be very difficult, not only for Blake and I as we advocate for and try to understand our son, but especially for Garrett, who will continue to struggle to communicate. His peers are starting to notice that he doesn't talk like they do, and it's only a matter of time before he starts getting teased and called a baby because he talks like one. That is hard for a parent to watch happen to their child, but it's even harder, I think, for the child. Sure children are resilient, and he'll learn to bounce back, but some childhood wounds scar and stay with you for a long time.

But enough fretting. What will come will come, and we'll take it as we get it. In the meantime, though, I thought I'd share a few things that Garrett is saying. His ability to communicate is progressing, albeit very slowly, and some of the things he does say are quite charming. For example:

• Thank you, Mom ("Dee-doo, Ma." This is said both to be polite and to express how desperately he wants something.)
• Ow, that hurt ("Ow, dah hur" -- usually said while clutching his head after he bumps into something.)
• I did it ("Ah di ih." I can't ever get from him what it is exactly that he did, but judging by the way he repeats it in succession, he sure seems proud.)
  
• Bird ("Bur-duh-duh." Our efforts to enunciate words so that he can hear and mimic them more clearly have backfired, a la Bambi and Thumper.)
• Sorry ("Dah-ree" -- spontaneously said when he's done something he knows he shouldn't have.)
• That's hot ("Da ha" -- usually said in reference to either the radiators or a dinner right out of the oven.)
• Wallace and Gromit and Woody ("Walla-la" and "Wee-wee." What can I say? He loves Wallace and Gromit and Toy Story.)
• Hot chocolate ("Ite." I think this word came from watching the flame from the gas stove under the kettle of boiling water. I've tried to have him slowly repeat back the words hot chocolate, but it comes out as "ha ite.")
• Airplane, Blanket, and Caleb/Baby ("Bee-bee." I can see how some of those words are related to his version, but airplane? I can't figure that one out.)
• Blessing/Prayer ("Beh" -- not to be, but unfortunately is, sometimes confused with the above.)
• Hello and Goodbye (which, surprisingly, both sound like a normal person says it. They are among the few words he has that are easily decipherable to an outsider.)
• Treat, Candy, and Cookie ("Twee," "Can-ee," and Cookie sounds normal, with perhaps more emphasis on the "oo" sound. He quickly discovered that from these words come very good things, so he uses them often, and is frequently disappointed when his requests do not always materialize.)
• Apple, Cracker, and Orange Juice ("Boppo," "Ca," and "Goro." It took us a good while to figure out that he was talking about orange juice.)

So no, we are certainly not sitting still, in either Garrett's efforts to talk more like a toddler his age, or in mine as I try to get him help to speed up the process. But it's a long road nonetheless. Long and winding. And bumpy. And it will be a good while before we reach the end of it.