Telephone

Lately I've been feeling deja vu multiple times a day. I think it has something to do with the day in Kindergarten we learned about the game of telephone. I remember it being so much fun and how each time someone whispered in my ear I was convinced that go around we'd get it correct and prove our teacher wrong...we never did. The game of telephone isn't fun when it is no longer a game and you're dealing with adults who are completely inept at their jobs. But the result...exactly the same, a jumbled mess of meaningless information that is loosely based on the original message/intent....and it never gets to the person it should, when it should, and why it should. It is very frustrating.

The frustration a special needs parent feels on a weekly basis just trying to coordinate therapies and services for her child and figure out how needs to be paid what and when is unreal. Imagine having to wait in line at the registry everyday. Each time you make it to the counter with all your paperwork nicely filled out, you're told you have the wrong form, please exit the line, take this correct form and start the process again, just wait for hours, get back in line and to get to the counter and to be told yet again that you filled out the wrong form, please exit the line, fill out this form and so on and so forth....for months. But in our case it has been going on since Asher was 15 months old. Can you imagine over a year and a half or waiting in line at the registry? Over year and a half waiting on hold on the phone. You get the picture. And it is frustrating

So Asher starts preschool soon. A huge transition for him, for us, for life as we know it. We have just now really gotten used to the plan we have in place, begun to build a life around the complicated schedule of a child with Autism. It isn't easy, but we've done it because honestly, that is how much we love him and it has become the only way we can truly say without words that we love him that much, that life, our life, his life, that the Cole family, will make sacrifices that most families cannot imagine making, for one beautiful, sweet, loving, and broken little boy.

So I've been living on the phone. Living. Every second not spent driving in the car to therapy, participating in therapy, or the hours I'm at work (and sometimes even those) is spent playing telephone between service providers and my health insurance, service providers and the public school, public school and Early Intervention, I'm exhausted. I'm frustrated. I can see why some parents just give up. Of course I won't. I can't. I wouldn't be able to look my little boy in the face if I did. But I can see how it would be too much for some people.

I need a translator. My own personal translator that can sit on three way calling and translate every single conversation and provide me with an accurate transcript including original message, the intent, and next steps. Which is all really silly, because in what seems like another lifetime, although not terribly long ago, I used to be that translator for other families. Why is it that I can't translate effectively for myself. Good Lord, it must be that not only are the lenses of my glasses tinted with emotion, but my ears and the ear piece on my phone is as well.

Or it is just that I am dealing with inept people who work for a broken ineffective system. I don't know. What I do know is that my heart goes out to all the Mamas that have to do this without the support of a husband or loving extended family, for the women who don't have my amazing sister, or live in a state like we do that actually offers services, even if they are complicated to set up, for the women who don't work in the field that have to learn the code from scratch. For all my special needs Mama friends who look to me, as lost as I am, for answers....you guys are my heroes and the absolute best of what the world has to offer.

So tonight I'm putting down the telephone. I've allowed it to take over too much of my week already and it is alas still just Monday. And I think tonight I'll shut the phone off. So if you're looking for me, it might prove to be tricky, that is unless you know what to listen for. The very best baby/toddler belly laugh around. Follow that sound, you'll find me chasing my little boy, tickling his feet, building towers and knocking them down, maybe even playing one of our epic two hour hide and seek games. Sounds glorious.