What is MY autism???

It depends. It’s the highest highs, the lowest lows, and everything in between. And some days – or nights as this particular case is at the moment… it’s all three at the same time. I went to sleep ( or is the correct term “napped”?) in the mostly happy zone. Happy that my boy is actually excited about seeing his new school. Happy that I was able to move him there. Happy that I believe I finally found the right class situation for him.

And yet…
I had horrific nightmares all nap long. Nightmares that my baby who is seven years old who STILL can’t spell his last name,  still doesn’t know his phone number, still doesn’t know his address- nightmares that my baby will be seriously injured or worse if he is placed on a general education bus. The school district wants to put this child on a regular school bus instead of one with a matron who sees to it that my child will arrive safely to and from school.

I’m furious. With whom, you ask? With MYSELF. For NOT knowing that there is a section on the IEP specifically addressing special needs bussing and I didn’t push the issue at the IEP meeting because I JUST DIDN’T KNOW. I feel sick to my stomach. Again. My hands are shaking. Again. I am having palpitations. AGAIN.

I AM OPENING MY SON’S CASE. AGAIN.

fuck

Today….THAT is my autism.

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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/

Treading Water

I started today with hugs and kisses from my kids. A perfect cup of coffee appeared on my bedside table like magic (thanks hubby). It’s Friday. We have fun plans for this afternoon. It’s not snowing for a change and we can actually carry ON with our scheduled plans. Should be a GREAT day, right?

Then suddenly…I remembered.

I remembered that this is the day that my mother died.

 I remembered that the whole reason for the fun plans this afternoon is because BOTH of my kids are ostracized on the playground because they are “different” and I want and NEED them to have something  HAPPY to look forward to this afternoon instead of the usual ‘Friday Afternoon Letdown’ when they see their friends carted off for playdates that they aren’t included in.  I remembered that this is the last day that my little man will officially be a student in the school he attends with his sister and kind of really likes (on good days).  I remembered that I STILL HAVEN”T BEEN GIVEN A COPY OF MY SON’S IEP and the meeting is on MONDAY. How the hell did I forget that??? Is my head THAT FAR up my ass these days? Apparently it is.

SO…my perfect Friday morning has rapidly turned to crap as I sit here awaiting the return phone call from the school telling me to pick up the IEP (if they know what’s good for them,that call had better come before noon or they WILL see my face). As I sit here, my heart is racing, my whole body is shaking, I am crying out of sheer helplessness, and I can feel my pulse in my neck. again. The ONLY thing getting me through this is knowing that at the end of this school day I am going to put every goddamned thing aside and take my kids to the children’s museum for some fun. I need to hear them laugh like I need air in my lungs. I need to see them be happy kids if only for a little while.  Before we go back to the fighting because Nick is stimming and DRIVING NICOLE COMPLETELY INSANE. Before we go back to PDD-NOS land where I have to keep telling myself BIG PICTURE because I am about to rip away everything that is familiar to my son and toss him into a completely foreign environment and PRAY that I am doing the RIGHT thing. I am shaking with the enormity of what I am being faced with and paralyzed with the fear that I may be making the biggest mistake of all of our lives.
HOW THE HELL DO PEOPLE DO THIS SHIT!?!?!?!?!?

Some days I think life would be so damn perfect if only autism didn’t exist. How great it would be if our kids didn’t have to deal with all of the difficulties they face and the therapies that are so helpful but sometimes seem like godddamned torture to our babies. If we, as parents, didn’t have to deal with such life altering decisions that make the idea of climbing Mount Everest seems like an easy day hike. 

Most days I am truly a glass half full kind of person. Most days I search for that rainbow in the clouds. Today is not that day. Tomorrow may not be that day either.

To quote my dear friend B; ” Autism, please go fuck yourself”.

I agree completely.