Revisiting the past/Reinventing the future

It’s been quite the past couple of weeks. I  had Nick’s IEP meeting and all of the related prep and anxiety before it happened. Some of that prep work included several visits to the developmental pediatric neurologist’s office for additional documentation. It’s a very different experience when I go with my son and when I go solo. Instead of the usual business of needing to keep my eyes pinned on Captain Chaos every second, I had a chance to look, REALLY look around at the other people in the waiting room, What I saw broke my heart. I saw parents with little babies all under 18 months old. I saw fear. I saw hopelessness. I saw heartbreak. What I saw reflected in the eyes of each parent there was myself, all those years ago.  I KNEW in my bones that something was definitely not right with my son despite being told repeatedly by every so-called expert that I was the one who was wrong. (The ONE fricken time I really wanted to be proven wrong, dammit). I sat in that same office with the same  defeated look in my eyes. I wanted to tell those parents to fight like they were on fire for their darling child. I wanted to tell them that with the help of early intervention, things WOULD get better. I wanted to tell them to believe, REALLY BELIEVE that while it would be a long and difficult journey, it would be one worth taking. I wanted to tell them that along the way, if they looked hard enough, they really would find some of the true gifts that autism could bring into their lives. It isn’t a curse. It isn’t a tragic ending. It’s a journey. One that changes from day to day, sometimes from minute to minute, but one that if they paid attention it could yield some beautiful experiences. I wanted to give every one of them a hug and tell them that they arent alone. There are a lot of us out there who have walked through the fire before them, and we understand. Society dictates that adults who hug random strangers who are holding children get a one way pass to jail so I refrained. But I wanted to. I so wanted to tell them that one day, they will sit where I was and look back with pride at all that their child has accomplished and how far they have come. I wanted to tell them that one day they will be able to smile and revel in the laughter of their own child and that they will learn to enjoy their angel baby for exactly who they are. I wanted to tell them that if they have faith in themselves and belief in their child and learn to fight the fight of their life, they will get their child every bit of help that is available out there. I know it – because I live it. Every single day. And I walk this path with some truly amazing people who helped to pave the way before me.

So I have decided something. I have long known that I have a big mouth. Wait, let me rephrase that. I have A BIIIIIGGGGGG MOUTH!!!!! So I am going to use that big mouth of mine to speak for parents like the ones I saw in the office that day who haven’t yet leaned how to fight. There are some parents who just don’t have the language skills or the resources to know how to fight to help their child. Does that mean that their children won’t get the services that they need and deserve? Sadly, from what I have seen, yes. It does. The districts aren’t looking to provide adequate services for children who cannot speak, or sit up, or hold a pencil. They are looking to save money. At the expense of our children – completely short sighting what the long term expense will be for kids who don’t receive adequate early intervention and school based support services.  So I’m going to use my powers for good now. Instead of just bitching about how bad the system is, I’m going to fight it. For my son. For parents who don’t know how to fight it. For all of our kids and their futures. Because I can. I was given this big mouth for a reason and I think I finally know what that reason is. I need a big mouth because I need to make a lot of people listen – because so many just don’t want to hear what amazing people our kids with autism truly are. People with autism can have unlimited potential if they receive the right teachers and therapists early enough to make a huge difference. Yes, some are more profoundly affected by autism than others, but they are still valuable people and need to be treated as that. I want to advocate for those who need  help advocating for themselves or their children. Sort of a ‘pay it forward’ if you will for all those who have helped me.

In the meantime, World Autism Awareness day is coming up on April 2nd. Please help us spark a conversation, increase awareness, or just show support by replacing your regular porch light with a blue light bulb. Tell President Obama that you want him to change HIS porch light bulbs to blue too. Sersiously. You can do that. Probably would be wise to say please, but still. Go for it. You don’t even need a big mouth . All you need is a finger or two and internet access. But please, find YOUR voice and let it be heard for the sake of everyone who fights the fight for autism.

http://lightthewhitehouseblue.wordpress.com/2011/03/16/this-is-my-autism/

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3 responses to “Revisiting the past/Reinventing the future

  1. Wonderful, CeeCeC!!! You WILL make a difference for those parents… in so many ways, you already have. In turn, there will be children who benefit from REAL help, and that is a gift to us all.
    xo

  2. Dear ms dragon slayer
    As one who has seen you at your best, your worst (and still looking quite fetching I might add) and all points in-between I can say I know you quite well. And I can say that the woman I married on that most precious day has been reborn before my eyes. Like the phoenix rising from it’s ashes you have found a calling within you that will not just help our young boy…but help all those who battle this behemoth. And i, your loyal and loving husband can say….I cannot be more proud if I tried. I see the hard work and dedication and tenacious spirit all wraped in one amazing woman who just got our son in a new school. And I bask in the idea that you could help all those who need your help…to help fight for their kids who don’t have a voice.
    Jb

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