Monday, June 20, 2011

Mom of an Autistic child...I don't want to get up!

Beep! beep! beep! why am I dreaming of my alarm? I roll over as the reality of morning hits. It's 6am and time to start the new day, a day that is full of potential and fresh. The sun is shinning, the birds are singing, I stretch and feel completely refreshed in my perfect Snow-white wake-up scene...lol! NOT!! Instead I try and hit the snooze button and miss, so I just lay there in bed, already anxious about what the morning will bring with its all-to-familiar but yet unpredictable challenges!

Ugh, do I have to get out of bed, can't I just hide from today and stay here buried under my safe, comforting covers? As I lay there still listening to the nagging sound of the alarm, scenarios of the day start to race through my head, preparing me for what may or may not come!

There really is no "thinking" about thinking of the "whats to come" and preparing on how to get through this day,  its completely automatic and is as natural as breathing in and out! Gone are the mornings of laying in bed excited about the day ahead, when the first thought that pops into your head are ones of the fun and joy to be had. I have come to learn that expectations and perfect scenarios are a setup for even more failure in an unpredictable, emotional day. I know, it sounds so pessimistic and I know what you are thinking...what does she expect if that is how she thinks? but again its all part of surviving and so much of this journey leaves you feeling like a failure, its hard to fail at something if you don't put it ALL out there to start with!

So instead my mind switches to strategising, "Optimistic Strategising" a plan on how to attack  work-with the intruder that steals the moments of joy from our everyday lives. In reality the moments are really quite simple, the thought of getting through the small task of putting socks on or eating breakfast, the act of saying goodbye or having to sit at the same table as your noisy brother (mind you he is only chewing his food, but to him its like a loud overwhelming fireworks show!) you know those small little moments that most people don't even think twice about or the moments that most mothers sit back and soak in, the simple moments of family joy. I wish, here in our home, every morning, it's these small little things that could be as huge as Mt Vesuvius erupting! The moments that drive this mama to tears and the longing for moments of joy and simple days.

OK, I guess the alarm has well and truly woken me up and my mind is awake predicting the morning ahead and planning for the impulsive, anxiety-driven tantrums to come. Is his blue shirt clean? Oh crap! It's Monday, he always has to wear it today, what was I thinking? OK, few its there! Will he have had a good nights sleep, that will help him to be more tolerable today? Will he lose it if I look at him or will he be in an affectionate type of mood? Should I be prepared to have breakfast thrown again today if he doesn't want it, but can't express it in words like yesterday? Will he want to be with his brother today or will he need space and reject all those around by yelling...go away, I hate you? OK (gulp) I'm going to wake him up! Quick little pep-rally....I can do it! I can do it!!! Beep! Beep! Beep! The snooze is going and it's 6:09 better get up.
I throw my hair in a ponytail and pull on my sweats foregoing the shower just to make sure I have enough time to get him off to school. Sometimes it's great and on a perfect day it will take 30mins to get him up and out the door. Let's just say it usually takes a little longer than that. And a perfect day...pffft, what is that!
"Good morning Harry! Time to get up!" I'll say in an easy-positive tone. Maybe I'll throw in a little pat on the back if I see he's not stirring? "Wake up" I'll whisper again, careful to not scare or startle him. "Ahhh I don't want to get up" comes the little groggy and somewhat grumpy voice from under the covers, all the while I'm thinking please be happy! Please be happy! Please have a good morning!!! Let's do this the easy way today, I think to myself! He slowly rises with complaint, (I understand I'm not a morning person either) but before I know it, kick right to the thigh...."agh, I don't want to!" he screams frustrated, anxious and clambering for his headboard! The day with Harry has begun! All I can think is how hiding under the covers this morning is sounding like a good idea and when is it my turn to scream "Agh, I don't want to!" either!

When people ask me what it is like being a mom of an Autistic child, I usually respond with a dumb-afied look, usually because I don't know how to answer it in less than hour long presentation or I have to really think and remind myself as its the only way I know (don't all moms go through this?)
I compare the mommy mind to a game of chess, I'll usually say. You always have to be at least 2 steps ahead of the game, anticipating the different scenarios, hoping for the best but prepared for the worst. Always ready with different strategies up your sleeve for when the play does not go according to plan. There is no cheat-guide here and definitely no easy way out, what worked one day may not work today and what didn't work yesterday maybe just what he needs today? It's the type of scenario where you are constantly blindsided and emotionally trampled, it would be nice to declare check-mate sometimes and just lay down and be defeated, that would be an easy and less painful way to end the game...ahhh, it actually sounds peaceful and honestly welcomed at the moment! But instead when game plan one, two and three haven't worked and there is nothing left after the mental and physical beating, no one wins! Only losers remain in this all to familiar scenario, a mom who is burnt-out and left feeling like she still doesn't know what she's doing and a gorgeous eight yr old boy who is innocently trapped and doesn't know how to control the outbursts or understand what his own little mind is telling and feeling! All for the sake of packing a school bag and a brain that works differently.

But we still have to keep going, us moms can't give up, we have to be that voice of reason for an impulsive mind, the peace and the calm for an anxiety driven action, the love and compassion when the hate and the hitting start...We are constant and unconditional with hearts as big as oceans and empathy as infinite as the universe.
The laundry can wait and those dishes are not going any where, our friends may take a back-seat and you become the "flaky" friend who can never commit. The needs of others always seem to outweigh the needs of your own, a shower...whats that? We all want a clean house and to be there for our friends, these are just some of our many daily "guilty feelings" We do what we can, just to get through a day without tears, maybe even living numb so it hurts less.

To all the mommies out there struggling with needs no matter how big or small! Know you are not alone, you have to make different choices, prioritize life differently, get through one day at a time! I pray that you have people in your life who support and not judge, love unconditionally and accept the what is!
Take joy out of those small victories and embrace the positives no matter how insignificant....life is now about searching through your day for a sign of hope and holding on through this crazy journey!




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Wednesday, June 8, 2011

Tide-pool exploring at Indian beach OR

Barnacles, hermit crabs and all you can eat mussels! What a wonderful way to spend the second mostly cloudy day-in to our vacation on the Oregon coast, but hey no rain!


The boys had a ball climbing rocks, playing with crabs and exploring the many rockpools. We also found huge starfish, sea-an-enemies, sea cucumbers and did I mention the millions of huge yummy mussels! So happy for a shellfish license, those Yummers are coming home with us!



Here are some of our discoveries in the tidepools....











Thomas really fearful of barnacles but still happy to try with daddies help!



Heading towards more tide pools!



Harry showing no fear as he scales the barnacle covered rocks, Thomas on the other hand has a fear of barnacles which made exploring for him a little more cautious, which as a mom I didn't mind.



Family portrait, yes we are all in this pick see....



Dave collecting mussels for a yummy feast! They were huge, up to 4in long.



Heading back along the beach with buckets full of mussels!



Back over the logs, Thomas did such a great job, he nearly lost his balance on the way over and was scared to do it on the way back, but he did great!



Back up to the car we head, the hike to and from the beach was beautiful too, lots of birds and native plants to appreciate.



Ok, not the best photo, but getting one of my two boys smiling and looking at the camera is just completely un-heard of. Time for snacks looking out over one amazing view! We love new adventures!!

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