Developmental Abilities

My daughter has, on a few occasions, now deigned to open her mouth and accept nourishment. Don't get too excited: at most she's ingested over the past two weeks about two tablespoons of food. In TOTAL. But it's such a huge step forward from not allowing ANYTHING in her mouth that I'm pretty happy about it.

One of the recommendations from the pediatrician was to put a referral in to an occupational therapist so that we could, if needed, after 12 months is she still wasn't eating, address what might become an oral aversion, given she puts nothing in her mouth. We both felt this was unlikely, that she was much more likely to start soon, as she has done. We still have a long way to go, but it's looking more and more likely that she'll just figure it out on her own. Late. But fine.

I almost completely forgot about the referral, to be honest, and just expected a call from some therapist at some point in a couple months. I don't know how this works, luckily.

But what came through the mail today was a Package. A Package with a capital P. With probably a dozen different sheets and information and stuff to read, along with brochures and letters and ... I had no idea what it was to start with, until I finally read the letter about a referral with a cc to the pediatrician, and then I remembered.

I've read a couple blogs by parents of kids with varying disabilities, and the hoops and issues they deal with sound overwhelming. This package gave me an altogether new appreciation for this. I mean, not only is there a ton of information to go through before we even talk to them, but for the life of me I can't find -- anywhere -- any information whatsoever on when our appointment might be, or how to go about getting an appointment, or what I should do next. Nothing. Nada. Zip. I mean ... what? What should I do? There's nothing that even says "we will call you soon" or anything. Believe me. I checked. I'm tired and sick and worn out but I checked.

What if I were a concerned parent? What if I were a parent who already had so much on my mind like my baby isn't developing, I think something is really wrong? I don't think that about my baby, I don't have that stress, but I imagine if you did you really wouldn't want to sift through all that information only to find that the one thing you needed to know wasn't there.

To add insult to injury, there IS information on how to appeal a decision, and the various ways you can appeal. and how the appeal process works, and who it goes through first, second, third, and fourth. Which just makes me realize even more acutely how tough things are when your kids aren't healthy.

Gah.

Anyway. I shall call. I shall ask. I shall endeavour to keep feeding my child, so much as she will allow.

And I will continue to thank my lucky stars that it isn't anything more serious.