Becoming Karen

I remember when I decided that none of my children would ever get a perfect attendance award.

My oldest daughter was in second grade and the quads were in kindergarten. I went to the kids’ school about an hour into the school day and had them get my oldest out of class.  She came to the office with a very confused look on her face.  “Congratulations!” I said, “It’s your day!  You get to decide what we’re doing today and where we’re going to have lunch”.  She was beyond excited.   We spent the rest of the day together until we had to go pick up her siblings.  Thus, the special day was born.

Needless to say, she happily told her siblings all about her day.  They immediately wanted to know if they, too, would get special days.  I told them they would, they just didn’t know when it would happen.  So every year since then, I’ve taken them out of school for a special day.

It’s gotten a little more complicated as they’ve grown up.  Now I can’t just show up at school and surprise them.  We have to plan around tests and major assignments.  And their number one priority is sleeping in while the others go to school.

Over the years, we’ve played putt putt golf, painted pottery, seen movies, painted, done crafts, shopped, played video games and pinball machines, and gone bowling.  All the while talking and laughing.

I love special days.

With five kids in the house, there were few opportunities to have one on one time.  That was something I longed to have with each of my children.  So special days are my time to really connect.  I ask them about school and friends.  I ask about their dreams.  I ask about their struggles.  And I listen.  It’s my time to really hear what’s going on in their hearts and heads.  Or at least what they’re willing to share.  And mostly, they are willing.  I think it’s because they don’t have to worry about anyone else hearing or interrupting them and they have my undivided attention.

So when we go to the end of the year award ceremonies and other kids get perfect attendance awards, I clap and smile knowing my kids will never get one.  And I’m okay with that.   I’m willing to sacrifice that award for the great blessing I get from spending the day with each one of them.

I just finished this year’s round of special days.  I even got to have one with my oldest who was home for a week after finals and before heading to her summer job.

My husband said that next year will be my last year to do special days since the quads will graduate high school.  I hadn’t really thought about them coming to an end.

My hope is that they will continue.  I’m not sure what they will look like or how often we’ll have them.  I may not check them out of school, but maybe meet them at school.  Maybe our special days will become special weekends or special afternoons or special nights.  I just know I don’t want to lose that time to be with each one of them.

So while I think that showing up for school and work and other commitments is important; I think perfect attendance is overrated…..

That moment when you realize you are that family…..

You know them… They seem to fly by the seat of their pants.  They’re the ones who run ten minutes behind; sneaking into meetings and events trying not to be noticed.  But they are.  They’re the ones who bring store bought goodies and try to pass them off as homemade.  They’re the ones who miss parent teacher conferences because they put the notice somewhere they won’t forget, but somehow do.  They’re the ones saying sorry a lot for turning in parent signed forms late and only after the teacher called several times.  They’re the ones whose house has piles of stuff on various counters, shoes mounded in the corner, and crumbs on the floor.

The signs were all there, but the reality hit hard several nights ago at an awards ceremony for one of my sons.  After a hectic afternoon of appointments and errands, we headed to the ceremony.  We showed up just as they were about to begin and realized that all of us were very underdressed for the occasion.  We found our way to some seats in the back hoping no one would really notice.  But of course, that’s not how it went.  My son made his way to his spot next to other kids who were dressed in their Sunday best while he was wearing the same jeans and t-shirt he wore to school.   As we took our seats we began to chuckle knowing that we had somehow missed some important information.  That’s when my daughter said, ‘We are that family.’

As I thought about that statement in the days to follow, I was surprised by the sense of freedom I felt.  For years, I tried not to be that family.  Even with a lot of small children, I tried to make it to places on time, dressed appropriately with homemade baked goods in hand.  I thought that was the goal of being a good mom.  After all, that’s what everyone else seemed to be trying to achieve.   There were a lot of days that I failed, but I knew that just meant I needed to try harder and plan smarter.  There came a day when I realized that not only could I not keep it together, but I was tired of trying to live up to some standard that was unattainable.  I was making myself and my kids crazy.  So I decided to give myself some grace and some room to be messy.

I try to keep the piles and clutter under control so that we don’t end up on Hoarders, but I don’t obsess over them.  I try to make sure that we are dressed appropriately for any event we go to, but know that sometimes just being dressed is a big accomplishment!  I also try to bring homemade baked goods when asked because I like to bake, but I feel no shame when I need to use store bought goods instead.  I try to be on time for appointments and events because it’s important to me, but I don’t panic or come undone when I’m late.

I’m learning to let go of the shame and negative thoughts when I fall short.  I’m learning to apologize and ask for grace, accepting it when given.  I’m learning to laugh when things don’t go the way I had hoped or planned, realizing that life is messy.  And in the process, I find I give more grace and mercy to all those other families just trying to make it through the day.

So yes, we are that family.  We’re doing the best that we can.  Sometimes we hit the mark and sometimes we fall short.  I’m just glad we’re doing it together…

You should be happy that he’s verbal; it could be so much worse…..

The words stung as they hit my heart.  I had been sharing with a friend my frustration, weariness and grief dealing with my autistic son.  I was in need of some comfort and encouragement, instead, I was met with instructions to compare.

We are taught to compare.  We compare in order to make choices.  We compare prices to get the best deal. We compare different products to choose the one that works the best.  Comparing can be helpful when we need to make a choice, but now, comparing has somehow become a way we try to comfort one another.

It seems that the objective is to find some set of circumstances that is worse than the circumstances presented.  Upon finding said circumstances, we are to find ourselves instantly and magically feeling better about the difficult circumstances of our own lives.  How ridiculous!  Yet, we continue to do it.

We say it’s for perspective; things could be so much worse.  I’m all for keeping things in perspective and being thankful and content for what you have, but that doesn’t take away the pain or difficulty of any situation.  What it says to me is that my feelings aren’t valid.  That I’m wrong for feeling the way I do.  That I’m not thankful for what I have.   It’s not true, though.  I am thankful for what I have.  But life is hard.  There is pain and sorrow.  I get weary.

And all of this comparing leaves us separated from one another.  We don’t want to divulge our difficulties or hardships just to be told to be happy that things aren’t worse.  So we silently suffer by ourselves; not wanting to share our hearts.

And what about the person whose circumstances are worse?  Are they now supposed to find others in worse places?  What about those at the ‘bottom’?  What’s their solution?  Or does it become a case of sucks to be you?!

This comparison thing doesn’t offer any real solutions.  Even if thinking of worse circumstances makes you feel better, the relief is fleeting.  In a short period of time it goes away and you’re left with the hurt you began with.  There has got to be a better way.

What if we began to just listen?  What if we acknowledged the difficulties of life? What if friends began taking each other to God instead of other people?  What if we stopped comparing our circumstances with others’ and started comparing them to God; who He is, His power, His love?  Maybe we would reach out.  Maybe we would find comfort.  Maybe we would find encouragement.  Maybe we would find strength.  I think it’s worth a try…..

After my son’s diagnosis of autism, I became concerned for my other kids.   How would his diagnosis impact their lives?

I heard stories of siblings becoming resentful because everything revolved around the disability.  I didn’t want that for my kids, but the reality was that our world was profoundly impacted by my son’s disability.  There were the hours spent going to and from therapy and waiting in the waiting room.  There were the places we avoided going because he couldn’t handle the noise and other stimulation.  (This was particularly true for Chuck e Cheese….even I get sensory overloaded there!)  There were the embarrassing temper tantrums that happened in public with everyone staring at us.  There were the songs he would sing at the top of his lungs when we went out.  There were the odd behaviors that always drew attention to our already peculiar family.  (Having quadruplets can cause a commotion.  More on that another time.)  Life was filled with compromise, frustration, and embarrassment.

So how do my kids feel now about having a sibling with autism?  I asked them and this is what they had to say.

It’s embarrassing.  My son doesn’t always remember that singing as loudly as you can isn’t always welcome. (Think walking the aisles of Target or through the middle of the mall.)  Or that public is not where you ask private questions so loudly that others can hear.  And no one wants to be associated with the teenager who is playing with the stuffed animals and speaking in unusual voices.

It’s frustrating.  My son does not like change and compromising is difficult for him.  So even choosing a restaurant to go to can be challenging unless you get him on board from the beginning.  If it’s not where he wants to go, he can be very unpleasant.  He also doesn’t share well, especially if it’s something on which he is very focused.  Which is very frustrating when it involves the computer and the other kids need it for homework.  He gives it up, but he is not enjoyable to be around for awhile.

It’s brought out a protective instinct.  A couple of my kids are protective by nature, but having a sibling who is seen as different has brought out that characteristic in powerful ways.  Not only are they protective of their brother, but they are very sensitive to others who may be left out or feel unwelcome.  They become angry and quick to action when they see someone who is being mistreated.

It’s normal.  His differences are just who he is so they become normal.  They only become aware of the difference when they look at other families or when we are out in public and he does something unusual.  They are used to their brother’s peculiar behaviors so they think of him as just another sibling.

I know it’s been hard for my kids.  There have been many tears of frustration shed as they’ve had to learn to adjust and accept their brother and all that encompasses.  But they also love him and embrace him for who he is.  He’s brought a lot of joy to all of our lives.  He has a surprising sense of humor which keeps us laughing.  He can be very sweet and compassionate.  He has a desire to please and make others happy.  He’s taught all of us to be more patient and tolerant of others.  He’s taught us to be gracious and forgiving.  He’s taught us to celebrate accomplishments large and small.

And I’ve learned that a diagnosis of autism does not have to breed resentment.  Talking to my kids and letting them express their true, raw feelings has allowed them to process the journey.    As a result, they love their brother for who he is and accept the compromises that need to be made.  It makes a momma proud!

My husband and I knew from early on that our son was different.

As our other quadruplets progressed, he seemed to lag behind.  And then there was the spinning.  We had a wooden riding airplane with a propeller.  He would sit in front of it for long periods of time just spinning it.  We suspected autism; it was confirmed soon after his third birthday.

Even though we knew in our hearts what the diagnosis would be, it was difficult to hear. I was handed a large manila envelope with brochures about therapies, agencies, organizations, and support groups.  I was also totally overwhelmed.  I remember going home and sifting through all the information.  The more I read, the heavier my heart got.

How far would he be able to progress?  Would he ever speak?  Would he ever stop throwing tantrums?   Would he be able to go to school with his siblings?  Would he make friends?  Would he be able to hold a job?  Would he be able to live on his own?  Would someone want to marry him?

Some of those questions are yet to be answered.   They linger in the back of my mind, coming out from time to time creating anxiety and stirring up grief.

I know I’m not alone, though.  There are many of us out there with more added everyday; people caring for and loving those on the spectrum.

So during this month of autism awareness I’m going to share some of our adventures with autism.  And I invite you to share your stories with me here.  My hope is that we can encourage and strengthen each other as we walk this path.

Today I was brave.  I went for my annual exam, which alone is an act of bravery, and I left my underwear on top of my clothes.

Now, you may be asking how is that an act of bravery?

I recently read a post about women hiding their underwear in their clothes when going to the doctor.  I laughed as I realized that I do that all the time.  As if they don’t know that I came in wearing it.  (And no, this is not the time to debate going commando.) 

But why do I hide it? 

I think it’s because it represents such an intimate part of me.  It’s something I wear close to my body.  It’s something that only a few people see.   And it can say a lot about my mood.  Granny panties mean I’m feeling blah.  Cute, colorful panties mean I’m feeling good and confident.  You get the idea.

And just like my underwear, I sometimes want to cover myself and not let people see the real me.  I want to be hidden, not seen.  I want to be safe.  But I’ve decided that change is in order.  I want to be seen.  I want to be known.  I want to be brave.

So, I left my underwear on top of my clothes.  I don’t know if the doctor even saw them, but I knew they were there.  It made me feel confident.  It made me feel strong.  It made me feel brave. 

I’m not sure what’s next for me, but I know that I want to push myself to be more honest, authentic, and brave as I live my life.  I’m excited about the possibilities…

P.S.  The next time you’re at the doctor’s office, leave your underwear on top. I dare you!