Finding compassion in places you never want to go...

There is no structure to this post...just a venting session.  Read at your own risk.

Recently on social media, I was made to feel that sharing my pain was just a burden to others and that they didn't really want to hear my "pain" or "hardship".  How can I put this?  Sorry if reality is too hard for others but I sort of can't avoid my reality!!  But, for the sake of saving friendships I decided to blog about my experiences instead.  Whoever wants to read can...and the others can ignore them.  Doesn't matter to me!

Here goes my blog...

I could hear the laughter of my children flowing down the hallway as my husband was being "monster Daddy".  I should have felt a sweet lightness in my heart and possibly a tear should've appeared in my eye to live in that rare moment.  I should've felt something wonderful.  Instead, my body was holding up a countertop as I drearily stared into the room that used to have a dining table but is now a mix-match of loose toys, some broken, most orphaned and lonely but all sitting atop a dingy rug with holes.  Oh, the unsettled living area is not why I stared off into space, nor was it the mess that was calling my name to clean it up.  No, my glossy eyes and numb emotions go deeper than that.  I believe its a protection that happens to mothers like me.  But is it really protection?  Why can't I enjoy the laughter coming from the next room? A thought like that can make the tension worse, can make the reality worse.  I can't enjoy much to be honest.  Most of my day is spent under attack and as a 24hr surveillance team of one.  My adrenal glands are working overtime!


What I'm going through now is nothing new to what I've been facing for the last 5+ years.   3 kids with ASD.  Why am I saying it again?  Well, because I have to keep reminding myself that this is why life is so unbearable and sad most of the time.  I read an article that said roughly, "mothers of special needs kids have the same symptoms as soldiers suffering from PTSD".  I will never try and take the credit of something so honorable as a soldier, so please don't misunderstand.  I'm just drawing the association that most times I feel like a surge of anxiety, fear, sadness, visions of danger, grieving, anger and total brain meltdown flow through me multiple times a day.  I know other mothers that share the same emotional roller-coaster and we all agree, it makes us less available to take care of our very needy kids.  We are stripped of our decision making process because we always have to factor in the inevitable, crazy and absurd!!  I blog about these emotions because I can't understand them.  I raised a child already, with the same list of rules that you raise your kids.  You teach them to obey and how to be polite.  Stay where Mommy and Daddy told you to or we won't go "______" (fill in the blank).  Be nice to your sister or no "______" (fill in the blank).  Life had conditions and consequences.  Sure, kids disobey and don't follow the rules.  But as time goes on they start to learn and start obeying more and more frequently.  So why is this so hard for our kids to do???

I want to cry as I type this because this scenario isn't at all what is going on in our ASD home and it's like a foreign land.  There is no "obeying or following directions" and no teaching "respect" (no matter how hard we try), there is no "if you do this, then you can have this"....again, we try...but we are ignored. How do we carry on like this day to day for YEARS??? I'm baffled.  There is no answer.  Yet we still try and in the meanwhile I feel like a complete train wreck.  My back feels broken.  My feet feel broken.  My heart feels broken.  If my husband were writing he would say the same about himself.  So here we are 2 people leaning on each other to get through a lifetime of uncertainty. Wow.  Marital bliss.

 


I hear others moms talking about their struggles.  How to juggle ballet with soccer practice?  How can they get home in time to fix dinner?  I am not trying to dismiss that other people have stress.  I am just looking for some common ground in my new life.  I wish I worried about things that other people worried about so I could relate.  I have to think about the strangest most random things regarding our kids and it is exhausting!  For example: when we are trying make a decision about family vacation, we can't simply pick a place, save the money, buy our tickets and travel clothes etc.  We literally have to think about: how can our kids cope, will they throw up, will they escape the location, what could happen if they did, will they get over the noise, will the crowds be too much, can they wait in line, what if they hit or punch someone there, will they stay in a stroller, can my body handle the constant lifting or fight when they have a melt down, do we need to bring an extra person, will it be a waste of money, will they sleep at night, can they get out of the hotel room, is there a balcony, can they lock themselves in the bathroom, will they eat the food, will they sit in a dining room, can we manage diaper changes on kids too big for the diaper changing station, how will other people treat us??

Just plain planning becomes daunting.  Most of the time we give up.  We stop planning.  Yes, we do have successful outings but it is NEVER leisurely.  It is constant running and struggling.  I am not kidding.  We recently took a 2 week family "staycation" and did have successful trips to local amusement parks, the beach, the fair etc.  Again I have to say, the craziness has become our new reality.  We felt it was successful because we "survived" and we had a few laughs.  Others might observe and say, "what an absolute nightmare, I would never do that!".  Funny how your perspective changes.  We see every outing as an opportunity for them to succeed in a social or community setting.  When they succeed it builds their confidence.  The only way for them to feel success is if we make it back to the car without any major meltdowns and very little yelling...and it order to do that we have to limit the length of time we are out.  We've got it down to a science!



A few months ago, our friend and pastor at our church gave us this book.  The author is a Japanese boy with autism that is non-verbal but able to communicate with an alphabet system and eventually was able to answer questions about how it feels to have Autism.  It was earth-shattering stuff for us to read because we were able to finally hear our children's voices.  Not to say they don't talk or communicate because they do...but this book talks about feelings.  We don't get to hear how our children feel...but this book helps us do that.  We realized very quickly that they are trapped in a mind that does what it doesn't want to do, that acts on impulse (no matter the consequence) and they wish they could control themselves but they can't.  It gives me a compassion towards my children when they are lashing out and bashing things in their anger.  I feel their pain.  But I'm also their mother and I want to guide and direct but it looks so different than the methods I had used with my older son.  This compassion has come from a place I didn't want to go...I couldn't have gained it if I never traveled down this road called Autism.

As I wrap this up, I have 2 therapists in the other room working with my older daughter and I suddenly hear screaming so I come to see what had happened and the youngest had bit her really hard in the chest (over a toy).  I gave kisses to the older, a little swat on the younger and made her say sorry.  I keep hearing this will get better.  I can only hope.

Comments

  1. I always appreciate the honesty, candidness, and humor of your posts. I have the utmost respect and admiration for parents of special needs kiddos and for all you do for your kids. Please keep posting.

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  2. I feel your pain, and totally get it. Visiting family can be really stressful too when they don't understand your kiddos. "Can't you just teach him self control?" - I wish! Disneyland? we can't figure out how to make that work- the lines, the heat etc. If we were rested and not so stressed we could probably do better at this but we are never rested and the stress never stops. I have told my husband sometimes I feel like I have PTSD and of course the depression doesn't help either. I try to just deal with the moment I'm in and sometimes that means turning off the feelings and becoming desesitized to the screaming but what else can we do?

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