Monday, August 27, 2012

Birthdays and benders...

My daughter had her birthday on Friday.  I mention that because it went pear shaped before she even got out of bed.  Alex beat her to it.  That was problem number one.

Problem number two was that it was not his birthday.  

Before Lizzy even got out of bed, I was hearing, "I hate streamers!  When it's my birthday I don't want any streamers!" He was running through the house tearing down pink and white streamers my mom had stayed up late the night before to put up.  She put up all the decorations at night so when Lizzy woke up, she'd be met with garland and streamers and balloons.

Didn't happen.

Alex was taking them down faster than anything.  Ripping them off the fireplace, trying to pop balloons, smash things, rip streamers and tear the house apart.

I was furious.

"Stop it, stop that right now!  Stop pulling those things down right now!"

"NO, I hate streamers.  When it's my birthday I DON'T WANT ANY STREAMERS!"  He was still running around ripping things down.  We had several more negotiations which were to no avail.  He was not listening, not comprehending.

The abbreviated version...

"Go to your room right now.  NOW!"  Stomping up each and every step, I drug him up.  Furious.  He was furious, I was furious, he was still mumbling under his breath, "I hate streamers.  Hate them.  It's not fair.  I don't like streamers.  I hate you."

By that time, Lizzy was up.  Decorations were down and Alex was stomping around upstairs.

And then nothing was going to go right for him.  He didn't like his socks.  His pants itched.  His food tasted funny.  His fingers felt weird.  And then his shoes.  Oh my fucking God, his shoes.  He couldn't find the right pair and he couldn't possible wear a different pair of the exact same kind of shoe.  Oh no.  He had to have that exact pair, the pair we couldn't find.  Never mind we have replicas of the shoes so this doesn't happen but ohhhh noooo, not today.  Today, this was the hill he was going to die on.

I tired to help him, smacked my elbow on the cabinet so hard I saw stars.  I was furious.  I lashed out and yelled at him, "Now what?  WHAT?  Am I going to have to find your shoes every day?  Huh???  What happens when you're twenty?  What happens then, am I going to have to find your shoes then?  Huh???  Get to the car right now.  NOW.  I've had it."

I was seething.  Furious.  All morning he'd been pushing buttons and I'd had it.  That was the hill I died on.

This was not how Lizzy's birthday was supposed to go.

And then it hit me.  Hit me like a thousand bricks.  This is the way it's going to be with us.  This is how it is.  Autism's in our lives and it's in every part of it, like a nebulous vine, its worked its way into every crack and crevice of our lives.  Every part.  It's just not Alex who has Autism.  It's our whole family.  It affects each and every one of us and it affects us all differently.

And for some reason that bothered me.  Bothered me to the core.  Bothered me that my daughter didn't have a birthday without being affected.  Bothered me that for twenty God-damned minutes in the morning I was trying to redo something it took him less than a few seconds to undo.  Bothered my that he was so bothered.  And most of all?   I was bothered that as a mom, I snapped.

You guys know me, you know I try to put a positive spin on things and for the most part I meet our struggles head on with a good laugh.  I have to.  It's the only way I know to survive.  But.

This has me in a place I don't want to be.  Mad that I lost my shit and mad that I lost it in front of the kids.  Mad that a day I wanted perfect for my little girl, went up in smoke before she was even out of her pajamas.

This is the part of Autism that most people don't talk about, the part where we struggle, where we cry, get angry or we just need a break.  Where, as a parent, I can say it never ends.  I wouldn't be telling the truth if I only shared the good.  Well, this is it, this is the side that makes me want to scream for the hills and scream a slew of cuss words so loud they could hear me in hell and be afraid.

I know he's struggling and I know he's upset.  I know this is the start of school and we're all maxed-out.  I know that, I get it.  But there are days where it all gets to be too much and I don't like it.

This was one of those days.

I only wanted one day.  One damn day.


Note: I'm still in a funk and I'm working my way out of it.  Please know, I love my son, I do.  There are times when I don't love everything that comes with Autism, not to admit that would be a lie.  I'm not trying to devalue anyone who is one the Spectrum or who has Autism, I'm simply saying that there are days when this is hard, really really hard.  




55 comments:

  1. I know exactly how you feel. You don't need to apologize for being a human being. We are not perfect and we have feelings and once in a while just absolutely hate the world. I have yelled at my son with autism when I haven't had sleep in forever because he doesn't sleep through the night - he's six. It's tough. I absolutely appreciate you being honest in this post. This is the other side of autism that sometimes just bites the big one. What is great is you recognize that although you had a rough day you still love your son and this is not your "normal" way of handling stuff. I always say that tomorrow is the clean slate.

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    1. Thank you. I was so ready to put that day to bed at 8:00AM. But, but...it was her birthday. I ran out and bought him some Lego's and let him do those while the rest of us celebrated. It's what he wanted to do so we went with it.

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  2. Thank you for telling the truth, telling me I am not the only one that sometimes melts down beside my son when it gets to be too much.

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  3. You are not alone.

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  4. Thank you so much for posting this, I have those days where I don't know how I can possibly cope anymore, then I feel guilty because I love my daughter and I know it is not her fault, but any human only has so much patience, in the end we can all be ground down until there is nothing left. I hope that being able to share that experience has helped you. Sending you hugs xxxxxxx

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    1. Yeah, I just usually write about all the funny and OMG stuff but this happens as well. To not write about what else we go through would be a lie. And thanks for the hugs. :)

      xxoo

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  5. I totally completely absolutely know how you feel.
    We are having one of those mornings right now.
    I love you. Know that it's okay to lose your stuffing in front of the kids. It happens.

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    1. Love you right back. And thanks, I know you get it and to know that means the world.

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  6. Oh no I'm sorry that happened. Try not to beat yourself up though. We're all human and humans have tolerance levels. Alex and you passed your tolerance level. Youre such a good mom. One bad day does not a bad mom make. Xo

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  7. (((Hug)))) I would send you a crate of wine if all the liquor stores weren't closed right now. I think that it is frustrating sometimes to be a parent, anyway, never mind when you have 'extra' like autism. You love your son, and you get upset when he is upset, and that is okay. You are doing the best that you can, period. If anyone has a problem with that, I will punch them right in the face.

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    1. Thanks, and the thought that you would hold someone down for me? Priceless. Probably good we live far apart. :)

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  8. My wife feels the same way you do Liz, only worse sometimes. It's nearly impossible to control every aspect of a child's life, especially one with an ASD. All you can do is roll with the punches, which is something that you're already good at.

    And you're right in saying that autism is like a nebulous vine. (note to self: look up meaning of nebulous) But the good thing is, that a vine like that helps hold everyone together. Which is hard for families to do this day in age.

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    1. Haha!! Thank you for helping me see the flip side of things.

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  9. You lost one battle, Lizbeth -- but not the war. Everyone... EVERYONE looses battles sometimes. And you know what? That sucks.

    But the important part is what you do AFTER that battle. I've been reading your blog for a long time now and I'm pretty sure I know what kind of person you are -- you are the kind of person who cleans up the mess, puts it all back together, and then manages to pull of amazing stuff like taking three children on a week-long vacation to Sanibel.

    Hang in there. It was a rough battle -- I know (we all know) -- we've all been there. And hugs.

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    1. You said this so well, so I'm just going to second this!

      Hugs, Lizbeth. So many hugs.

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    2. Couldn't have said it better than Karla did. You told the truth, Lizbeth. It might hurt, but it's still the truth. And sometimes, it needs to be acknowledged so we can move on. Thanks for helping all of us move on this morning. Sending some extra love your way.

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    3. thanks you guy. sniff, sniff. I say screw taking the family to sanibel and we all meet up there instead. Like the Oxygen Project on the beach....

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  10. Please don't be hard on yourself. You are only human and nobody ended up in the hospital. It's all okay! I totally understand. I lost it almost every single morning for almost twelve years trying to get my son to school on time. Forget about me getting to work on time! Never happened!
    xoxo

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  11. Your feelings as a parent are just as valid as Alex's feelings. Yes, it was a very rough day, and a horrible way to start the day. And yes, you wanted your daughter to have a special day, and that didn't happen. You are allowed to feel angry about that, and no one should tell you otherwise, because if they do, they're asshats.

    And yes, it does affect the whole family,and that's hard to accept sometimes. BUT, I know you. When the funk is over, and the sadness wanes, you will get busy. Busy writing that social story about birthdays. Hell, maybe even a social story about fucking crepe paper. But you will. And next year...will be different.

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    1. Exactly!!! i've been working with Tommy for over a year with... it's ok to be mad. its ok to hate something and be pissed off. It's not ok to destroy property and/or beat the shit out of people/property. Teaching when to draw the line.. is so difficult.

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  12. I'm so sorry that things went so badly. Finding the balance between siblings is very, very hard.

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    1. I know. And I know you know this all too well as well. I bet you do it better though. :)

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  13. You are describing almost every holiday, birthday, special event that has happened in our family for the last 12 years. At some point during the day my son is upset and acts out because he is not the center of attention. I have lost it before, and felt terrible about it, I will feel just as bad the next time it happens, and it will. Thank you for your candor in your post, we all need to know we are not alone in this. It is part of the daily life with autism and you are right, when one person in the family is on the spectrum...the whole family is, in one way or another. Hang in there!

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  14. been there, done that. You are not the only one. Thanks for sharing.

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  15. You say it as it is. I see myself there but I know also that it is the getting back on track that matters not an occasional meltdown. Be kind to yourself.
    Sending you warm thoughts from afar.

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  16. Thank you, really, thank you. Your honesty is what this is all about. We are flawed humans that act emotively and say bad words. No judgement. Now, go have some cake.

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    1. I will be the first to tell you I ate half the damn cake after the kids went to bed!!!

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    2. HAHAHAHAA I would have done the SAMEEEEE THING!!!!!!!!!!!!!

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  17. Oh, I have been there. So many hugs coming your way. I could ditto the majority of the comments above. I hope that the funk doesn't last too long. Remember, we're human..we have limits...we are going to lose our shtuff once in a while....

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    1. Thanks, no the kids found the Big Bang Theory and have been watching non-stop. It seems to have gotten me out of my funk!!!

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  18. Oh my gosh, Lizbeth! Every one of us has lost our sh!& at some point. Alex, you, me Toots, and everyone here. It just sucks that Lizzy did not get to see the streamers but I'm betting that once Alex got the Legos and you all celebrated, it was okay again. And I'm with Flan on the scoial story. I'm so sorry it was like this. Unfortunately, we'll all be subject to reruns of the same sort - I still have hope that someday this too will pass and a new - less dramatic way to cope - will take its palce. xoxo

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  19. Sorry, Lizbeth. Reality sucks at times. :(

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  20. "I snapped"

    And you didn't use the opportunity to tie him to a chair and put streamers on him? You were in the zone. You could have gotten away with it this one time and then had a memory to go back to for all the times that are still to come. Oh well. Just create a false memory of doing that.

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  21. Lizbeth, sending you warm hugs!! You are a human being, girl. Human. We all lose it and want desperately to take it back. I don't have kids but I am twenty years older than my youngest brother and had to babysit all the time cause my mom Was a single mother. I can still remember a couple of times I lost it with him Even 25 years later.
    I am sure all the parents who read your blog appreciate your unfailing honesty. I started reading your blog because I love the way you write. You find the humor in the ho-hum. But I admire you even more for the honesty and the hope that you give to everyone who has an autistic child. Every battle that you turn into a positive inspires each of us. As well as the times you are not perfect.
    Love ya girl. Xoxo

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  22. Yep, I hear ya.....it effects the whole bunch! You're not alone.

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  23. Oh, BTDT. And of course it happened on a day that you wanted to be special for your daughter. (((hugs))) and happy birthday wishes to your special girl.

    As for Mr. Alex, deep breaths (I know, easy to say and doing so makes one an excellent candidate for target practice, but I digress). The flip side of our son being diagnosed with ASD and me having to leave my job is that I had more TIME for my daughter, with whom I fought every ding-dong morning over shoes, sock threads, and the dreaded TAGS on clothing.

    I wonder if they have social stories for how to behave for a sibling / family member / friend's birthday? Hmmmm... and - tomorrow is another day. I hope it's a calmer one.

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  24. I don't think it's realistic to sugar coat everything or not admit that some days are really hard. It sucks sometimes. Not one of us would doubt that you love your son. I hope you work your way through the funk soon. You have a whole bunch of people here who totally understand and support you and wish you well. Happy Birthday to Lizzy.

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  25. Yes, I've had days like that too. And I find it really hurts when its one of your other kids who is affected - my son with aspergers still does not even know about his sisters Debs last year as I sent him to his Dad's for the day as I knew he would not be able to cope with all the attention being on her. And he didn't like her very much at that point either ((hugs))

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  26. I'm crying because this is where we are right now and it hurts so bad and it hurts me to know that someone else is having to deal with the same thing. I feel like my family is falling apart and there isn't a damn thing I can do about it. Hopefully the rest of your day got better and her birthday turned out to be a good one.

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  27. Oh yes. Been there too. Birthdays where nothing goes right if they're not allowed to pretend it's theirs too. All very unfair on the sibling, and I've got to that snapping point too - sometimes though they just need to see how angry you are, to understand what matters most, and then a little bit of that does go in if you can talk about it calmly another time (ha). Part of you is probably bothered because you know that if you had approached it a little differently - given him a special present for when he woke up, distracted him with a balloon (?!) or something else, then it may not have turned out quite so bad. But we just can't think and prepare for everything and have that foresight ALL the time, it's really impossible. I bet you do 95% of the time though. And boy it's tiring, huh?!

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  28. I snap more often than I would like to admit. Nail on the head with this one, missy. I hope you get to feeling better.

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  29. i'm not reading all of the comments because i've only got a few minutes here. That feeling.. of "omg this is it. this is how it's going to be".. that comes in waves here. The older he gets, the more it hits me. And snapping.. thats hard. I battle so much STILL with trying to make Brianna's life as normal as POSSIBLE while having to cater to Tommy's abilities to cope. You're human my friend. This isn't an easy journey.. so if you don't snap and let some some of that steam sweetie you'll explode. Maybe it's good that he got to see that even YOU have a breaking point.

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  30. THANK YOU! I was thinking I was the only one who completely flipped shit on my kid. I did it today, in fact. I only have one. I can't imagine three. Doesn't help that my husband's being an ass. However, I digress. Thank you for sharing this, it validates my feelings and I'm sure the feelings of a lot of others out there.

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  31. You are not alone for sure! I have these days often with my son (also named Alex) and then I do get just as mad at myself. I love him dearly and wouldn't change him for the world, but I don't always love the Autism package. From what I've read on this blog so far, your struggles are so similar to mine! Usually (but not always) when I do snap he realizes mommy has hit a breaking point and will snap out of it and come hug me. He's finally gotten to that point where he realizes it is possible to push mommy's buttons too far. I pray someday you get there too!

    www.facebook.com/AutismMomDiaries

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Comments make me all squishy but remember to be nice. If you're not nice then what you said goes *poof.* There's your warning.