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.

As Luck Would have it.

Throughout your life, people will tell you a lot that you are lucky. As a child you use the term positively "You are so lucky!". It took me a long time in my life to realize that there are two types of luck. Good luck. Bad Luck. When people say "You're so lucky!" They could be in fact commenting on the fact that everything bad happens to you. This is the way of my life. And it isn't me having a bad day, feeling awful for myself, it is just the facts. I look at luck through this lense. I was born to a poor family, I lived in the worst, most dangerous part of inner city Boston. They write books about the projects I grew up in. By age six I was being bounced back and forth between family members, and age 8 it was off to foster care. That was the start of my luck. I could mention that if an accident is going to happen...it will. I've been hit by a car, fire cracker back fired...exploded in my face, as a baby I fell three stories out a window. Hell lets starts with the fact that I was born at 27 weeks gestation. I've been in multiple car accidents. And if an illness is rare, I'll probably get it. If the side effects of medication are uncommon, I'll expect to see those too. It is just how it is. If I were a glass half full type of girl, I would say that my real luck in life is that I've managed to survive at all. Maybe.

All that aside I've been thinking a lot lately about the expectations I've had for my life. I certainly didn't forsee it going down this way. When I was a child, in the middle of a crappy childhood, I promised myself that as an adult, when I gained all control, that I would make all the right choices and that my life would be better. I promised myself that if I did anything right at all, I would make sure that my children were happy, had the best childhood, it wouldn't matter what sacrifices had to be made. Stupid promises. Of course I made them, so I am trying to realize them, but how naive was I? Seriously. As a child I knew nothing of things like Autism, the statistics, the effect it would have on our lives. If you had said oh 1 in 88 which means it probably won't happen to you, maybe I would have been smart enough to say "Well, crap, it probably will happen to me then, because everything happens to me" Historically speaking, its just how its been.

So of course, because the Flu can be gotten, we got it. I should have expected it you know? I feel silly that I didn't. When will I learn? But we got the flu, it happened. It was awful. I wonder for a few days there if we would even survive it. But then maybe that is the flip side of my luck...it drags me through hell and back but somehow allows me to survive. But we were very sick...bed ridden sick. Then Bam! Have some Pneumonia. Just for kicks and good measure. I mean why not? So its been two weeks of struggling to breathe. Pure exhaustion. Broken sleep. And I'm wasted from it. Asher hasn't seen one of his therapists in two weeks. He hasn't gone to school. Hasn't gone to gymnastics. Hasn't seen his Mimi or Grammy. He tells me he misses Emmy, and Zoe, and Mimi, and Deb, and Grammy. He cries in the middle of the day to call Daddy at work. Just to call Phill crying, saying "Miss you daddy, a love you" and make Phill feel guilty for going to work. This is how our two weeks have been.

And he has regressed. Sometimes his speech is barely intelligible. Meaning I can barely understand him. He is back to jargoning (think of hearing sentences that sounds like tigga tigga tigga right mama?". It is sad to watch and a sad realization that as luck would have it, Asher would be a child that experiences substantial regression in short periods of time without therapy. Awesome. Although really, whose fault is it that I didn't see it coming? My own. That dissapointment....it is my own fault. I let it smack me in the face, when I knew in the back of my head it was coming.

Last night Asher woke up for the fifth time, coughing and wheezing, saying he was scared. So I brought my baby to bed, I cuddled him close, I stroked his hair. And somewhere in my cloudy brain the Taylor Swift Song "Ronan" began to play in my head. If you haven't heard it, it is about a gorgeous 3 year old boy who died of cancer. Ronan's story has been close to my heart for a long time now. I often have to put away my thoughts of Ronan, because it makes me too sad. But last night, I thought of Ronan's Mom Maya while I held my almost three year old and couldn't help but think about my luck again. Really luck is in the eye of the beholder I guess. For all my bad luck. For all the crap that has happened to us. I was there, holding my little boy. Something I know Maya would give anything for. So I hugged him close and I fell asleep.

Last night I dreamed in painful detail of the car accident I had when I was 20 weeks pregnant with Asher. It was so real, like it was happening all over again. I could feel the panic. And that thought that played in slow motion as my car spun out of control, "there is no way my baby will survive this". Painful detail. I woke up with a start, sweaty and gross. And I lean down and kiss a fuzzy little head that is laying against my chest. As luck would have it, my baby has survived a lot. Even before he was born, he survived a lot. His luck it seems, looks a little like mine. Bad shit finds us, but we survive. I don't know if that is good luck or bad luck, or if it is just what it is supposed to be. But last night I hugged a baby I thought I'd never have. And for a small amount of time, I forgot about his Autism, his regression, his immuno problems, his allergies, I forgot about everything that makes him different, everything that has lead to a huge deviation from the life I thought I'd be able to give him. I hugged my lucky little boy. And just for a few precious moments I thought to myself. "You are so lucky"