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Wednesday, August 13, 2014

Lucky

I will be the first to admit this is not the life I thought I would have. I mean, come on. Who signs up for it?  Even teachers, therapists and other professionals that work with our kids clock out at the end of a shift.  Hell, half the reason I left the field after the Kiddo was born because autism was burning me out. HA! Autism Mafia was like "Oh no Girl.  Just when you think you're done with us, we pull you back in."

So yeah, some days are less than ideal.  I might not always show it online but trust me I am far from an Autism Pollyanna.  However despite the sleep, food and behavioral issues, I'm pretty lucky.  No really.  Let me break this down for you.

I"m lucky it's 2014.  We know so much more now.  Way more than even a generation before us did.  My kiddo wouldn't even be in my town's school district had this been like it was when I was his age.  More likely I would of been encouraged/pushed into sending him away to some facility where visits would be rare if at all and the care?  Let's not even think about that.   As much as I joke from time to time that the Kiddo is available for rent (Two night minimum) or that a band of kidnappers would probably return him after having him for a day, I really can't even wrap my head around this idea of him not living here.

I'm lucky for the Internet.  Again, this goes with the 2014 thing but when it's 1 AM and I can't sleep because I am too busy having insomnia over my Kiddo or he has decided it's a sleep optional night, another autism parent is up somewhere in the world.   Or there are blogs to read.  Or good quality crap TV to watch online.  The computer can be my lifeline and my mindless entertainment.  I can just lurk or pour my heart out onto the page like I am now.  Thank god for blogging.  I think I'm slightly less annoying to my family because I have somewhere to get this all out.  Or at least they see other people say "ME TOO!" and realize I'm not just making this stuff up.  I have seen a difference in them.  Maybe they're just afraid I'll put them in the blog.  I wield that like a sword then.  I can make ya a hero or a villain folks! ;-)

I'm lucky I have a husband that stayed around.  So many do not.  So many bail.  Not him.  He gets tired. He is never sure what kind of scene he's going to walk in on when he comes home from work.  (I suspect he checks in on Facebook before he heads home for the night.  I would.) Even when he's off work, he's just on another shift at another job.  This boss is far more demanding, the hours suck and this Daddying job won't even match a 401K.  He's here doing it with me though.  At least I have a co worker I get along with and I can say "WTF?" too.  Plus, he's kind of cute and I'm allowed to sexually harass him.  In fact, he encourages that.

I'm lucky my son's school district does not suck. He's been going since he was three.  Off the top of my head I can think of maybe three or four problems that needed addressing.  He's ten now.  That's a pretty good record when I think about it.  Before you get yourself in a twist thinking "Oh her kiddo must be much more high functioning and needs less.", nope, you couldn't be more wrong actually.   I am very grateful we live where we live.  We go without quite a bit in areas because being in this district means that much to us.  Yes, we go into IEP meetings prepared but I've never left one enraged.  We get to "a place of Yes" I guess you could say, both sides.

I'm lucky because this could be more complicated.  He could have several other health issues to boot.  I know several families who are dealing with autism and "Fill in the blank" medical challenge.  (Seizures, heart problems, diabetes, vision and hearing loss)  Again, he's ten.  ONE, ER visit.  Just the one.  I know right?  How the heck am I managing that?  Knock wood, I haven't a clue.  I"m just lucky I guess.

I'm lucky because it has been worse and it got better.  I'm lucky because I have gotten used to the way we live.  I'm lucky because my pity parties for one don't last as long as they used to back at the start of all this.  I'm lucky because I can find the humor now and then in this.

I'm lucky because even when it's a really crappy day I can go to a drive through window and get an order of fries and make my kiddo happy.  Whoever said money doesn't buy happiness clearly never saw the look on my son's face when given a side of fries.  Thank goodness it's fries he loves.  Foie  gras would of been a much more expensive food to obsess on. Sure wouldn't of worked as a blog title either.  :-)

11 comments:

  1. I'm grateful you are here to show me that I'm not the only one going through this and that it's okay to be stressed out and even crushed at times by autism. I have been a prisoner in my own home for several years by my two girls with autism. On a good day they can be manageable and only cry a few hours, but on a bad day my oldest will cry and kick from the second she wakes up to the second she falls asleep 16 hours later. We can't go in public, we can't go to friends' houses, and we can't have people over. It's a hard life and very isolating, with no breaks. Some days I can't even eat any meals because I have to spend every second of every day managaing a meltdown. It's that intense and neverending. My husband feels like I have no right to be sad and thinks if I feel depressed then I'm just not strong enough and need to learn to cope and not put my stress onto him by talking about it. I am completely alone in all this. Blogs like yours are what keep me going and help me realize the problem is not me. You are the only voice in my life telling me I'm not a bad person for feeling sad and that I'm not an awful mom, that I'm doing the best I can in a situation that would drain the life out of even the strongest person. Thank you from the bottom of my heart.

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    1. Charlotte, I'm so sorry you're having such a rough time. I hope you have some respite care available to you, even if only for a few hours at a time. No matter how broad your shoulders are, that's a big load to carry on your own. I doesn't make it any easier but please know that there are lots of us who get it and send you virtual support.

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    2. Dear Charlotte that is truly awful. I wish I could send a hug and some helping hands through the internet. My ex husband did the same to me and it ended. Its hard to have two enemies at once: your spouse and autism.

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    3. Charlotte, I am so glad that you come here for needed validation. You are in my thoughts.

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  2. LOVE THIS! I feel the same way. There are some days when it's hard and then there are days when I recognize how lucky I am.

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  3. I love your perspective. I have no doubt that you are struggling at times, yet you still find humor and are able to think positively, acknowledging the negative but not dwelling on it or setting up camp in the pits. Thank you for your honest perspective on life :)

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  4. Mama Fry I have known you for 26 years. I am every single day learning from you. While my girls are neurotypical, I use many of the concepts and ideas that I see to manage my family. I am overwhelmed by the success you have had with your Fry. I am not surprised at all. I am proud that this young woman that I knew 25+ years ago is such an amazing advocate for her family and for others. I just want to share how proud I am at how well you are addressing the outreachneeds of your family. You just make your appointments and continue on with Little Fry. You are an inspiration. Not just because of your autism outreach, but because you are balls to the wall making sure that you're kid get what he deserves. I want to believe that I would do the same for my girls in a similar situation but my girls tested typical so at this point. I will have to monitor closely. I am lucky enough that so far my girls are neurotypical and are doing well as they start full day Kindergarten for Joey and Full Day 4 year old PreK for Jordy

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  5. I feel so much the same way - even though I would not have asked for this, I feel so lucky in so many ways.

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  6. Brilliant. Love all of this, nail on the head stuff. All reasons which keep me happy for the most part too. The weekly trip to Ronald McDonald's place I could have done without, but hey, I'm lucky it's not daily right?! So glad I found your blog, you're definitely a happy inspiration :D

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  7. Thanks for remind me of how lucky I am, too. Sometimes, it's easy to forget.

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  8. Thank you for reposting this. My son is 4 and we were officially invited to "Club Autism" this past January, though we were eagerly awaiting our invite for about 2 - 2 1/2 years. I'm a stay at home autism dad and I'm grateful for being lucky in all the same areas (Sans sexually harassing your husband. That would just be weird. And wrong.) I'd also add I feel lucky my son has taught me everything I value, hold dear and love in this life, and here I thought I'd be doing that for him. He's also taught me the lines to nearly every Pixar and Dreamworks movie as well as hundreds of YouTube play doh surprise egg and toy review videos in existence as I must be ready to "run lines" with him with no notice. Which, I admit, is really a lot of fun. :-)

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