Snapshot Anxiety Syndrome ...

I have a confession to make.  I have developed some fairly serious anxiety regarding parties and holidays and family gatherings over the last few years.  Scooter has such a hard time at parties anyway and then the inevitable happens ... someone wants to take a picture.  Oh boy.  My tummy starts hurting and I start to sweat a little.  Maybe it will be okay.  Maybe it won't.  Chances are there is going to be rudeness and possibly tears.

It's always the same thing - at some point during a party, someone is going to want to take a group picture and there's a very good chance that in doing so the whole party is going to go down the drain.  At least for me it is, because I am going to be the mother of the kid who is screaming and crying like he is being physically harmed because you dared to try and take his picture.  I am going to feel guilty that my kid ruined your picture and I am going to feel frustrated that I will have to try and explain to some relative we see once a year in a few short words why he's acting this way.  I am going to feel like you are talking about me behind my back because I must be doing EVERYTHING wrong and my kid must be SPOILED ROTTEN since he can't just sit there and smile like everyone else.

To be fair - he's better than he used to be.  We can get him to actually get in a group photo here and there, now and then these days.  But most likely, he won't smile or look directly at the camera.  He puts on his 'mask' which looks like a blank stare and a pout combined into one bland look that he wears in so many pictures. So now maybe I will just feel guilty that my kid ruined your picture because he won't look at the camera or smile.  And maybe you will be talking behind my back because he's just ungrateful about getting stockings or eggs with candy and money and couldn't he just smile and look like he kind of enjoys being here just once?

I like to believe (and therefore talk myself into the idea, constantly) that no one we love would actually believe this stuff about us or would say any of it, but I constantly fear and dread it and worry about what people really think I am doing with my kid.  It is very, very difficult to change the dialogue in my head when Scooter is having a bad moment.  Of course, the more comfortable he is, the better he is going to do.  So when we go to the 'BIG' family gatherings where he sees relatives once or twice a year or when we go to Wisconsin every other year - those situations, the ones you really want to commemorate with big group/family photos - those are the hardest.  They are also the most chaotic with absolutely no sense of routine or pattern that my munchkin can discern and interpret and flow with.  He's usually a mess. 

For example, two years ago we went to Scott's aunts house for a small-ish graduation party for her son.  Scooter had no memories of her house, had no idea who would be there or what he would encounter.  It didn't matter how much we explained to him or how well we tried to prepare him, the child would NOT go in.  He sat on the front porch and refused to enter the house.  Granted, I think that was the third party that weekend, but yeah.  Fun Stuff!  Scott stayed with him out front and his brother came out to help coax him in.  Eventually Scott got him through the door and the house (as quickly as humanly possible) and out to the back porch.  He calmed down, he ate some chips and had a drink, he played with some cousins.  By the time we left he was having a ball running around the backyard with brothers and cousins and you would never have known there was a problem.  Then again, no one asked to take his picture that day.

About a month later, we were in Wisconsin on vacation.  I prepared for that trip with Scooter in mind.  I spaced events, prepared a social story, gave him lots of down time and transition opportunities. He did so very well, slowly warming to cousins he didn't remember and friends that he didn't know.  After a long afternoon picnic with some of our favorite people, we were gathering in groups for pictures.  People wanted snapshots of me with my family - and I tried.  I knew he wouldn't want his picture taken so I gambled and didn't tell him that was what we were doing.  BIG mistake.  HUGE.  When someone said 'say cheese' and he figured out why we were all clustered together across from someone he didn't know .... holding a camera .... well, let's just say the screaming might have been heard a mile away.  Lesson learned - don't try to 'trick' your child with autism who needs time to prepare for EVERYTHING!!!!!

I get it, I feel bad.  I wish when the grandmothers tried to get ALL their grandkids into one picture, kind of looking at the camera and seeming generally happy to be there - I wish that this would work!  I want those pictures too!  And if my niece or nephew is making a face or crying or looking the other way - it doesn't bother me a bit.  I'm able to shake that off and say 'yep, that's okay, get what you can get' because I know there will be a hundred more pictures of those kids that come out well.  No big deal.  But when it's my munchkin, again, oh I hate that feeling.

Like I said - he's better.  He's very good these days with his immediate cousins.  We got a few gems like this at Christmas:

Of course - they were about to open presents a couple days early, so who wouldn't be happy, right?

And this weekend, we had a small egg hunt with the families in our cul de sac.  Sitting with the kids he plays with every day, his comfort level was at a very nice high and we captured a bunch of photos like this one:

Look at that smile!  See, he really does want to be there!

But, of course, it's still touch and go.  So, yesterday, when he was surrounded by cousins he sees once or twice a year and aunts and uncles he doesn't know well, it was tough.  The good news was that the party was at a home where he is quite comfortable.  And we were early, we've learned to just be early!  He does so much better if he's already out back playing as people arrive so he's not overwhelmed by walking into a large party in full swing.  And he played and played, perfectly.  Right up until we asked him to corral with all those cousins inside the house while eggs were hidden.  He wouldn't leave my side so I couldn't help.  And then we asked the kids to line up by age, just like always, but he couldn't do it and he couldn't do it very vocally.  I calmed him down, put him next to his brother and stood there with all the kids while the pictures were taken.

At least he was over the tears for the moment (they began again when we started the egg hunt).  He just put on his mask and let everyone snap away.  Becki made it in the picture too - but she was keeping a toddler in the line-up. Me, there I am, standing amongst all the kids making sure my 8 year old doesn't run away.  (Seriously, can they stop growing?  That group next to me are all 14 and on their last family egg hunt. And I am not even the tallest one in the group!)

I don't really know what went wrong.  I can only speculate and try to head off the problem the next time.  Before the hunt, I had taken the kids down a line of photos that Becki had displayed.  They were each of the 'group' photos of the kids at Easter over the last 8 years.  Oh my - they have all grown so much.  Scooter looked at each picture, asking me to point out where he was.  I thought maybe he would 'get it'.  We take the picture every year.  Every year we take the picture so we know who was here and we can see how you've grown.  Every year.  We take the picture.  And he tends to do better at the parties we do every year because he sort of knows the routine.  But no, not this time.

He had a small meltdown on Easter.  For us, it was small.  I'm sure it didn't look that way to others.  I don't really care anymore though.  I get so worried about making it work and trying to get him into and through parties and pictures that I can make myself crazy.  It's hard and if someone doesn't get that, it's okay.  I know they don't really get Scooter all the time either.  They see him in snapshots at occasional gatherings and they can't really know what's going on with this little boy that they love.  Those photos are not a very good sampling of what living with my baby every day is like.  And it's okay that this is all they see or know.  It's okay that they may look back and wonder why he never smiled.  They are only snapshots and they are not the full picture.  {On the flip side, people see him playing with his cousins outside and wondering if he really IS on spectrum.  Because lots of kids on spectrum can't do that.  They are all so different, and this is something he does very well, while pictures are something with which he struggles constantly. Everyone else's opinion of our diagnosis: A discussion for another day!}

Scooter will ham it up for me to take a picture, so it's not just the picture he has a problem with.  In recent years he's been able to vocalize that he doesn't like pictures to be taken by people he doesn't know, but I think there is more to it than that.  I think group photos and large gatherings put way too many faces in his field of vision and it's very hard for him to interpret even one, much less 10 or 15 at a time.  It's high stress for him and everything is unpredictable.  Unpredictable environments are hard work for him.

One of his older cousins was snapping photos yesterday too.  I saw a couple today on facebook and I wanted to share them with you.   This was after the hunt, after he calmed down and started to play again.

That's my munchkin.  That's the boy I live with most of the time.  And even that precious, happy face is just a snapshot.  It doesn't show our daily struggle with getting out of the car for school or the meltdowns we face when we are running late and I have to try to get him to do something out of order.  When you see these, you can't hear the sadness in his voice when he tells me 'Momma, I want to play soccer.  I just can't!' or the frustration in my own when I'm begging him to try putting a food in his mouth that isn't on one of his lists, PLEASE!!!!


We will keep going to parties and we will keep taking pictures. I'll keep getting a stomach ache worrying about it beforehand and sometimes I'll look like a bitch not very cooperative person when I call it quits and pull him out or even worse, don't make him pretend to try.

And someday when I look back at the years of photographic memories, I might wish he was in more of the group shots. Maybe I'll wish I had forced him to do more so that he could further develop that social skill.  Or maybe not.  Maybe I'll remember that it was more important to be his mom and not force him to do something that makes him so uncomfortable so that he could just have a happy Easter.  In the mean time, I'll just keep taking snapshots of him when I can get them and hope that more have a smile in them than the mask.

And I am learning to appreciate the mask as well.  I am learning to see it as his coping mechanism.  When there is too much chaos and too much to deal with, and someone (even his mom) wants to snap a picture, he puts on the mask and separates himself so he can manage.  Without a melt down and without stimming or chewing his shirt or anything else, he can just use the mask for a minute and make it through to the next thing.  Because the next thing is that he can't stand the smell of bread and every single person around him has a roll in their hand.  And someone may touch him before they wash their hands.  And that is a much harder thing to deal with at this party than my mom taking a picture of me looking rather dapper.

It kinda makes me wish that I had a mask of my own.  Anyway, next time we are gathered together friend, and my sweet boy doesn't want his picture taken and he yells 'NO' and it sounds kind of rude and then I don't step in and make him do it so that I look like either 'rude mom' or 'bad mom' ... now you know why.  And maybe you will just squeeze my hand so my tummy ache goes away and I know that you love us both anyway.

Thanks and God Bless...

Grief Steals a Voice . . .

My voice has been muted, silenced.  My voice has been gone, for months.

Once upon a time, it was a normal Friday in November.  I got up, got the kids to school and drove to work.  I talked to my parents on the phone while I settled into my desk and checked emails.  Then I got off the phone and got busy for the day.  Not even an hour later my dad called with news that set off events I still can't completely wrap my mind around.  One minute it was business as usual, the next found the world coming apart at the seams.

Grief is a powerful, living, moving and sinister thing.  It's also gentle, calming, healing and quiet.  Grief is a lot of things to a lot of people.  I've had my share.  I've mourned for family and friends that I still miss with heart aching clarity.  Some losses came so closely upon each other that at some point a few years ago I just stopped feeling the pain.  I shut it all out and closed down as much of myself as I could get away with for a very long time.  When the phone rang with more bad news, I would well up for a moment, cry for just a heartbeat and then push it all way, way down inside.  Then I'd fold another load of laundry.

Unfortunately, Grief can be put on hold but it can not be held at bay forever.  The only way to get through it is to feel it and if you avoid that it will seep into the crevices of your life and mess a lot of stuff up.  A whole lotta stuff, my friend.  Thanks to a very dear friend and counselor, I was given an opportunity a few years ago to go back and work through all that gunk.  It was not fun and it was definitely work.  Hard work.

I spent months working my way backwards through my losses.  Some of the ones that hurt the most were the most surprising, the ones that I thought weren't as close to me.  Some that I thought would be the hardest, were the simplest and just needed more tears. It wasn't just missing people and crying over their loss, there was a lot of anger there as well. And as I tore through layers of physical loss that I needed to grieve for, I found emotional and spiritual losses that I had glossed over as well: loss of innocence, loss of trust, hurt and anger over failed relationships and emotional abuse, even the loss of some life choices that were the result of making other beautiful ones, like being a mom to a baby by myself once upon a time.  It was all there and it was all raw and all of it was clogging up my ability to be a good wife and mother, sister, friend.

Through it all, I learned so much about myself, about my God and about the cycle of living and dying.  I learned how to communicate with my family better, how to set boundaries a little firmer, how to stop and feel what I needed to feel - even if it meant making my boys uncomfortable by sobbing all over them. I vowed to myself to let myself feel it all, even if it felt like I was going to fall apart and never be put back together, I had to feel.  And I learned that I had to use the tools God gave me, most specifically writing.  I wrote so many journal entries about hurt, anger, sadness and loss that I had to find a way to celebrate as well, that's why I started this blog.  I needed to write just as much about the things that brought me joy and laughter and even frustration over those things in life other than grief.

My family; my boys and my husband and my home - they are my life song.  They are my mission, my career, my life's work, my purpose.  They are what I was put here to do in this life.  And if they are my song, my melody, then the words I write are their accompaniment.  Whether anyone else ever reads them is not important.  Whether it's a journal entry about loss, a blog entry about how frustrating it is trying to keep a bathroom clean with all boys, or an email written to a friend, they are all a prayer to my creator.  The words are balm to my spirit, pleading to my maker, praise and thankfulness, shouting at injustice and laughter at the insanity of life.  You don't have to read them, but I have to write them.  They are my voice.

And then, one day in November, my voice was muted, silenced.  My voice was gone.

Grief is a powerful, living, moving and sinister thing.  It's also gentle, calming, healing and quiet.  I have felt it all this time around, there's no question.  I've had my share of losses, but this one has frayed my edges and cracked my center.  This one has melted through my family, down to my children who felt it more profoundly than ever before.  This one makes me want to scream at the Heavens "WHY???" and leaves me humbled at the vastness and mystery of the great design.

And I couldn't write.  Because I was already feeling way too much, so I couldn't do it.  I couldn't tap into those feelings even more.  I couldn't even journal, how was I supposed to write about birthday parties, and field trips, winning science fairs and how scary it is that we are facing high school in a few short months?  How could I explain to you how I barely made it through the day on Thanksgiving and turned into a total grump and wuss on New Years, but I found more peace and poignancy in Christmas?

I've begun at least a million times.  On paper, a keyboard, in my head - I sometimes know exactly what I want to say.  I want to recount for myself every moment I remember with her so I don't ever forget.  I want to try to reason through why I can't get over her toes - the toes I stroked while she was lying in that bed, perfectly painted and beautiful - and how trying to understand it means I postpone my pedicures as long as possible and then suck it up, walk through the door and pick yet another shade of purple for my own toes. I want to explain to you, or me, or someone how there's a big piece of sunshine missing from our lives that will never be filled.  I want to relive the last time she stood next to me in church, praising with me.  I want to tell you how scared I am to do VBS this year because she was such an integral part of my family's experience there that I don't know how I am going to do five whole days of it without her.  I need to figure out why just being at church these days is so hard, even though that's where so much of our support has come from - because she was there, everywhere! - and I still expect to see her there.

I've begun again and again, but I haven't been able to complete a thought, an idea.  It hasn't even been 5 months, but some days it feels like an eternity already since I saw her smile.  Other days it feels like just yesterday she was teasing Scotty about needing to dress to match me when we come to church and that flip flops were not cutting it.

There is joy and there is peace.  Some days are filled with lots and lots of laughter.  Some days are still filled with a flood of tears.  I don't expect that to change for a while. Every time we do something else without her for the first time, it reminds me that life moves on.  Sometimes that makes me very, very mad.  She was so very young and life should be moving on with her, not without.  But I also know that every step forward is also a step towards our eternal reunion.  With her.  With others. With Jesus.

I think lately I've put off writing because I was afraid I could never do her justice.  Or that I didn't have the right to miss her as much as others.  Stupid, insidious, useless thoughts.  And she'd be the first to tell me so, I think.  It's easy to deify those that are taken from us suddenly and too soon, and I try very hard not to do that.  However, I do think God always knew He was taking Veronica from us early on so he packed a whole lot into that sweet little frame.  Yes, she was silly and sassy and stubborn, but she also carried a faith and wisdom beyond her years which has taught me quite a bit.  She would simply say 'Believe' and to 'float on'.

When I mentioned that I was struggling with how to start to a new friend, she said I should just say why I was struggling.  So here it is - I'm hurting and sad and I can no longer separate the sad writing from the happy writing because it's all tied up together in who I am now as a woman and as a mom.  So if you are going to travel along with me you are probably going to get a good dose of all of it, either here or in email or on facebook or in person.  My joy at Scooter's wonderful transition to his new school is completely entwined with the bittersweet memories of Veronica sitting with him week after week in Kids Town on Sunday mornings.  My awe at Tyler's growth and maturity and his next venture is tempered by missing how he and Veronica used to tease each other.  I can't even think too much about her and Riley as a baby without getting all choked up.

I just miss her.  It's not every moment, but it colors most moments. 

I sure miss that smile.  I think I always will.

My voice has been muted, silenced.  My voice has been gone, for months.

But it's coming back.  It's time to start writing again, to use my voice.  It's the accompaniment of my life song.  You don't have to read it, but I have to write it.

Thanks and God Bless