Saturday, July 28, 2012

Facebook, marriage and autism, NOT ALWAYS THE BEST MIX!

Since my husband thinks I bitch and complain on Facebook and then erase it so he can't see it, I'm going to bitch and complain and hope he sees it on here and possibly on my blog, of course he would have to look at my blog, without me asking, and he only checks Facebook when he thinks he I'm bitching about him, but whatever, semantics!

So he posted today on Facebook for everyone to see, that everyone should know that from "4 pm until 2 am every day he has Austin."

Two people who have a close understanding of autism, but are male, 'liked" the post. 

So I thought I set the record straight. It is now past 3 am and I am still awake with Austin.

Which leads me to address Ed's complaints about time frames and how many hours a day Ed is watching Austin.

If you do not know Austin is an almost 11 year old with autism. When he was 2 he slept 2 hours a day. Since we met TACA and GFCfEF things have gotten better, but some how summer brings out the worst in Austin and Ed. Oh wait I see a common thread here, for both it is summer vacation. Ed is a high school teacher and Austin, well he is a student, one with autism. Both are not at school (Austin is at ESY but it is not the same) and out of their normal routine. For the mom/wife that still has to maintain a normal, stable life for both, it's never fun! It is summer and both are out of their routine and I must entertain them both and keep my sanity.  Is it football yet?  (Remind me of this subject mid October, when Ed is at football 24/7)

During the school year this is a stretch, and now both of you want me to do it 24/7? With neither at school?

Something has to give.

I guess it did today, when Ed posted and I was asleep until 2 am ( I did not go to asleep at 4 pm, but I guess since I did not get home from the National Autism Society of America Conference of America until 8 pm, Ed took some liberties is writing his "story". )

So lets start with Ed's issue, that not just yesterday, but most days when Austin is up until 2 am, Ed is watching him. I agree and give Ed huge props. When we dated we both stayed up late and partied hard. After having small children, under 3, that changed. Ed took the late shift and me the early one. Then the kids got big and we could both stay up late and the kids would play quietly until we got up.

Unfortunately we made the mistake of having a second set of kids and things did not turn out so well. We went through the baby stage and not sleeping and then we hit the toddler stage of less sleep, which at that time we did not know meant autism.

Things have gotten better, a lot better, since then, but with everything we go through it cycles and I'm pretty sure when Austin wakes up at 4 am, or like today still awake at this moment at 3:43 am that now I'm the one awake.

While my husband decided to take to Facebook to bash me on Facebook I'm going to point out that parenting a child is not the same as parenting a child with autism. Most parents cycle their kids into sleep habits, most parents of children with autism don't get that luxury and become snarky with their spouses.

When you see mine or Ed's snarky Facebook posts remember that we are not your average parent. We are parents living and dealing with life and autism.

Friday, July 27, 2012

I am thankful!!

A great life lesson: It is always good to say "thank you", you never know what the impact will have.

I had a mom come up to me today at the national ASA conference today and thank me for my posts on the yahoo groups, which I have not done since November 2008, and Facebook.  She wanted to let me know that my child, Austin, and his journey made a difference in her life and for her child.

I am very appreciative, because I it reminded me of 8 years ago, when I was  alone and doing this on my own with a search engine, and I found Dana's View. I stalked that poor woman, via yahoo groups (8) including GFCF Kids, an enzyme group and many others, until she brought me HOME, to Talk About Curing Autism NOW where I found, where I belonged.

If I ever meet Dana's View, I will thank her from the bottom of my heart, not just for Austin, but for the person who thanked me.  Dana's life changed my life, my kid's life and Andrea's family's life, we are all better people thanks to Dana putting herself out there.  I hope I can repay the debt I owe her, a debt she would never even think I owe.

I have said it a 1000 times, I do not have a recovered kid, but I have a completely different kid thanks to TACA and  the other TACA mom's and  the Dana's of the world who were brave enough to bring their stories forward or tell parents about organizations like TACA.  They were not held back by worry about their kids being PUNISHED or losing services, they were not be held back by fear, that if you told another parent about a service that a your school district gave you, they may take back that service or rescind it.  (And yes, I had a parent tell me that)  They stuck their necks' out and they said, (fu) I am going to get other kids services, it is not just about my kid!  The world I live in today is much better place because of TACA and Dana's View, I know many parents who are like me and pay it forward.

Life lesson, if you put yourself out there, you do make a difference, even if no one tells you it.  Someone is where you are today and needs to hear what you say.  You can change the world, it  starts with one person at a time!!!