Autism......and my marriage

We use to be fun.......fun, fun, fun.  I don't think our fun disappeared because of the Autism, I think it was more the whole becoming parents thing.  We never fought, we always had money and we were always partners in crime.  Now its a struggle to stay on the same page, my husbands inability to realize that our son wont be "cured" and the fact that we have nothing in the bank that is making it our lives a Roller Coaster Ride.

I don't believe the statistic about 90% of Autism families end up in divorce blah blah blah, I believe those people would have ended up divorced anyway.  I feel like its some inflated number to scare the crap out of people.  Is it harder, yes, but does i mean I walk away from my marriage because we aren't on the same page about discipline....NO.

I might ruffle some feathers with the next thought on my mind....but that's ok.  Sometimes I think we are so obsessed with the idea of Autism that we completely forget about our spouse.  Do I think everything in my marriage is my fault, no, but I don't help things.  Since my son got diagnosed all i do is read and do research.  I talk and talk and talk about ASD to everyone.  I blog, I comment, i video tape.  I concentrate so much on my son, that i forget my daughter, I forget God and I forget my husband.  Then all the reading makes me grumpy and I'm a huge bitch.  I yell at everyone, i freak out over nothing and i slip into the stupid depression I am pre-disposed to (thanks family history).

So no, its not the Autism itself, its the parents grasping and clawing their way through it, trying to help their kids communicate, make them feel better, to calm their children's nerves......you end up loosing yourself, how can you not loose each other?

I use to be funny......I use to do funny dances and stick straws up my nose, I had fun stories, I had friends, i use to put on make up and do my hair, I sung in my car, I had a great collection of big sunglasses, I use to give a shit what my house looked like, I use to be optimistic, I use to dream,.........and stupidly I lost all that because I'm so self absorbed in a damn disorder that I cant win against.  I watched my neighbor throw tens of thousands of dollars in the garbage on EVERYTHING......and her son still wont say a word......he wont look at us.  She says I'm so lucky, I'm so lucky he looks at me, that he says he loves me.

Listen, I'm not saying I'm giving up, or that I'm not going to to my damn best to help my son, but I think for the sake of our marriages and our sanity some of us need to step back.  I wish i was like my husband, hes so "well I had the same issues and I turned out fine, I don't know why your shoving fish oil down his throat"  I got annoyed, but he had a point.  I've also left him out of it all, i go about my business dealing with things, doing new things and I don't even tell my husband what I'm doing......its like I forgot he existed.  Sucks, i feel like a great mother and a crappy wife.  I hope I can balance this out some how

CSPSE.......

CPSE = Committee for Pre-School Special Education.....I'm not sure how things go in other states since I'm new to all this but I can explain NY for you.  Between the ages of Birth - 3 your child falls under the care of Early Intervention which is run by your county (mine being Nassau).  Lucky for us, we live in the 3rd most expensive County in the country, we have the highest taxes and because of this kids in our area can get amazing services between the ages of 0-3.  When your child turns 2.6 years old its time to start the transition into the school district so that by the time they are 3, the county is no longer paying, but the district is.  Once again I am blessed to be renting in a town with high taxes :)  Before your child's 3rd birthday you must have a CPSE meeting to determine what services the district is willing to provide for your child.

Today was my CPSE meeting.  Now, because I know I was in a decent district and my son had preformed pretty bad on some of his new evaluations I was walking in trying to be laid back.  I knew what I wanted, full day pre-school with at least 5 hours of ABA at home.  I was warned that they probably would say no to home therapy, but I could ask.  I thought the hardest part would be arguing for home service, but no, the hardest part was being read the findings of my sons evaluations.  I knew he didn't do his best, I had read them over and over myself and absorbed it.  It wasn't until a complete stranger read every weakness my son had out loud, page after page that I literally felt like I was having an out of body experience.

When LP was born I knew I would be his biggest fan, but when people told me I would have to be his advocate I really didn't think this was for me.  Somehow during my Out of Body Experience , out came this person I didn't know.  Truth is, I am awkward and I hate to talk in public around people I don't really know about something I don't know everything about.  Today though, I looked up at a bulletin board, saw a  lady bug push pin (lady bugs have always been a God Wink for me), opened my mouth and out came everything I had to say without an ounce of shakiness to my voice.  Somehow I got through it, sounding intelligent and persistent and in turn got full day pre-school with the possibility of home ABA.  The possibility is huge, because they didn't say no.....they didn't say yes....but they didn't say No.


My advice for those parents going through this is to know that its stressful, but in times of stress, the spirit can do amazing things.  You never doubt your child, so never doubt yourself.  You are your child's voice and if you love that child, I promise the words will come out.  Fight forever and never back down.