Wednesday, January 26, 2011

Meanwhile....Back in the airport

So, we are in the throngs of negotiating the waters surrounding the island known as the Preschool Program for Children with Disabilities. The very term makes me wince. I am not sure that I have really come to grips with the term "special needs" or disabilities. I'm thinking the entire thing needs a new name, like "Preschool Program for really adorable children with parent's stuck in an Amsterdam airport." Yes, it's long but makes a lot more sense.

I have spent days doing paperwork. For every question they asked, I attached a separate sheet explaining my answer. For every milestone listed, I checked "delayed." For every health problem listed, I checked "yes."

I attached 5 extra pages of data, not including more pages and a booklet on 7q11.23 duplication, and prayed someone would actually read all the data provided. (Thanks to my Dup Group buddies for helping with that!)

In the midst of doing the paperwork, I have returned to the airport and the aisle of grief. Once again I am mourning. Once again I am struggling with denial, struggling with change, struggling with wanting to have a "normal" life for my child all the while struggling with the need for professional intervention to get him where he needs to be for kindergarten. (The more I hear about kindergarten, the more worried I become.)

I was brought almost to tears one day as we played Legos in the floor for the very first time. We spent two hours building bridges, roads, and stairs for his animals and trains. I was brought to tears by the thought that our spare time was once again being whittled away. You see school won't be in place of therapy two days a week but in addition to therapy. Selfishly, I want a day each week that we can spend together as a family, and selfishly, I want a day each week where Snugglebug and I can crash, relax, and unwind. You do the math. There aren't that many days in the week or hours in the day.

I love our quiet down-times when we sit playing (a.k.a working on OT and speech homework). I have come to grips with so much of this adventure, yet just as I find bit of balance, a new ball is thrown into the mix, and I must find balance juggling even more than before. I can't even really put my emotions into words. I want things to stay the same, yet I want to embrace change. I want to accept once and for all that life for us is going to be full of challenges such as this, but it seems acceptance is outside my reach.

I'm peering at the daffodils outside the airport. I'm glad there are at least windows here, and I seem to have located a payphone to call friends and family for a shoulder to cry on and an ear to listen.

If you are clueless as to what I am referring to, I advise you to read: Amsterdam International.


Jennie said...

You have every right to feel apprehensive, worried about the future, sad that things are changing and that life isn't "typical". It is all part of the ride. :) I remember being so worried about putting Jackson on the bus the first day. Ryan rode with him just to "make sure". But.... he LOVED it. He was smiles the whole way. Even though I wasn't ready to let go, he was ready. I also knew he was getting the services he needed. But... as a momma, you'll always have to fight for those. You are an excellent advocate for G and I KNOW you will always see to it that he gets the best. You are wonderful. Yes.... I totally know what you mean about the therapy / school dilemma. You'll just have to go with the flow and figure out what will be the best balance for your family. For years, I was hard core. But this year, as Jackson has gained more ability and comfort, we've actually taken a break for two months and it has been wonderful. We start again in February. So.... moral of the story, you can switch things up if it isn't working. That's what's so great about being a mom to a "special". You KNOW what they and you need. Good luck. You will be great!

Susan said...

Hey there! Reading your post brought me back to where we were at this time with Livi. You are right in the time when I had what I call my 'mini-mental breakdown' :). I felt overwhelmed by everything that I needed to do to get Livi ready for Kindergarten, almost quit my job, cancelled the Disney family vacation we had planned (because of her behavior problems at the time), dropped out of school and spent most of my day crying. If that's not the airport, i don't know what is! The good news is we took a step back, made some adjustments, and did the best we could. I was able to stop crying every day and realized that in the big scheme of things, more often than not, doing your best IS good enough. Sure, I would love to have Livi in a reg classroom, honor roll, tearing up a basketball court, etc. What I want most though, is for her to be happy. I realize that the things that seem so important when they are little really aren't going to be quite as important after school days are done. So, right now, I am able to be happy with the progress she makes. I'm sure there will be times that I return to the airport in the future--probably several times and I do not look forward to those days. My dream is that she is independent after she grows up. My primary goal is that she can be responsible and happy and that we can support her when we need to. I know what you mean about time. We finally made choices to feel okay about not doing specialize therapy for everything but instead substituting activities that were more typical (and more fun). Give me a call if you need someone to talk to. Susan