Saturday, January 25, 2014

Waiting for the Storm to Pass

Yesterday, as I lay on Mae's mattress while she clutched my hand, holding perfectly still lest I make a sound that bring back the waves of tears that had finally stop after almost an hour, I found myself thinking about our diagnosis, and even right there in that painful moment I felt a wave of gratefulness that we were no longer adrift in a sea of wondering what on earth was going on with her.

The afternoon had been perfectly normal up to that point, but I've also been expecting tantrums lately because we started a probiotic a week ago and saw an instant increase in tantrums (from basically none to twice a day) as her little tummy has adjusted to this new addition to her supplements.  I've been clinging to my book which says that reactions to probiotics usually clear up after one to two weeks and we seem to be heading in that direction with each day being a little bit better than the last.

Still, I wasn't prepared for the intense sorrow of this tantrum.  She was so, so very sad.  Mae had fallen asleep on the floor and taken a nap while I was reading to the kids to pass the freezing cold afternoon.  She woke up in hysterics.

I scooped her up and tried to sit with her on the couch but she jumped up and grabbed my hand and took me over to the baby gate at the bottom of the stairs. So I opened the gate, thankful that Paul was there to watch the other two, and followed her the stairs.  When she got to the top she looked at her room and then turned and ran into my room.  I thought that maybe cuddling in the big bed would calm her down, but as she sat on my bed looking around she became steadily more upset.

"Do you want a bath?"  I asked her through the sobs, not expecting a response, just hoping that it would help.  We've started doing epsom salt baths in the afternoons and she loves pretending to be a mermaid in the tub.

She stopped crying for a moment to watch me pour the salts into the bath, but after about five minutes in the tub the sobbing and shaking took over and I carefully picked her up and took her into her room to get her dressed.

Once she was dressed I watched her for a moment, feeling helpless.  She pressed her face against the cool wall and wept and somehow, in that moment, I felt like it all was beginning to make sense.  Or at least, I hoped that the sense that I was attempting to wrestle from our afternoon of tears was actually true, because if it was I might, in some small way, be able to help.

I'd read two posts this past week and as I lay on her bare mattress next to her and she pulled her heavy down comforter up to her chin and tried to disappear in the crack between the bed and the wall, they came back to me.  The first post was on a new blog I just discovered called Autism Chick, and the blogger talks about her understanding of what a young man who's overwhelmed is going through while being forced to go into the gym at school (although that description falls so short of doing the post justice and I'd definitely suggest clicking on the link to read it).  The second post was by Jess at Diary of a Mom and her description of an experience with her daughter that she shared earlier this week came back to me as I lay there, trying to comfort Mae and do something, anything that might help.

Climbing!
"It's okay baby bunny.  Do you want your bear on?"  I turned on Oatmeal Bear's "womb sounds," which she usually loves and the crying increased.  I quickly snapped it off.  "I love you so much Mae."  The sobs intensified at the sound of my voice.

At some point, after almost compulsively trying to comfort her with words a half dozen times, I began to realize that any time I spoke, or moved, or made the tiniest sound the sobs would intensify.

She began to calm down, laying on her back looking at one of my hands, while clutching the other hand tightly.  I made my hand movement copy hers, since she loves it when I imitate her, and she almost smiled.  She made shapes with her hands and I copied them.  Then she touched the wall lightly.  I copied the movement but my big, clumsy had made a tiny patting sound and she looked at it, horrified, and began to sob again.

And so that was how I found myself laying there, attempting to be perfectly still, while she clung to my hand and I waited for the moment to pass and it was in that moment that I found myself grateful for her diagnosis.

You see, before I'd began reading everything I could find about autism, I would have been frustrated.  After an hour of screaming I would have been at wits end.  I would have wondered why she wasn't outgrowing tantrums.  I wouldn't have even begun to attempt to understand what was going on in her little overwhelmed body.  Instead I felt my heart breaking at her struggle, but I was also thankful that I could be there with her, even if the best support I could give her was my silent presence.  

In the beginning people asked me why I thought we needed a diagnosis.  They said that it was just a word that wouldn't change anything.  At first I disagreed on a basic level, because of the therapy options that became available the moment the test results came back.  But it's more than just therapy options.  By learning and reading and gaining a tiny picture of understanding of what she's experiencing I find myself in a position to be there that I'm not sure I would be in if we didn't have that one little word that "labels" my three year old.

Cuddles with Daddy.
Without the label I would have thought she was just a three year old angry about not getting to go outside and play in the -17 windchill.  With what I've learned from reading about autism I'm able to stop and try to see the way the downstairs and my room and even the sound of my voice, were all overwhelming her.  And I began to see her room in a new way.

She strips the sheets of her bed so it's a bare white mattress.  Everything is cleared away so it's just a mattress, the walls, her favorite two heavy blankets and a few of her favorite stuffed animals that sometimes make the cut and get to sleep with her.  Compared to Sadie's cheerfully pink half of the room it's bothered me in the past (especially the insisted upon bare mattress).  To my eyes it sometimes look dreary.  A part of me wants to brighten it and straighten it and make it fit my definition of a pretty little girls room.

But now?  Now it's beginning to make sense.  It's a refuge when the rest of the world is overwhelming.  She flees to its simplicity and it helps calm her.

After an hour I stretched my leg a tiny bit and it brushed her Pinkie Pie doll that was laying at the end of the bed.  The doll began to say "I'm Pinkie Pie!" in a voice that filled the room.  I winced.  She sprang up and grabbed the doll.  She stared at it for a long moment, her face serious.  The moment stretched on.  I waited for the tears. She pressed the button again and I found myself pondering her love of all thing's Pinkie Pie lately, and how Pinkie Pie with her love of parties and meeting new people is about as far from the part of the spectrum that we're hanging around on as one can possibly be.

Then she stood up and smiled and started to bounce.

Finally asleep cuddled up to our sister.
It was over.  The storm had passed

We went downstairs and had dinner.  She climbed on Daddy's chair and hugged him around the neck.  She raced around the house with Patrick.  She fell asleep holding her big sister's hand on the couch, the tears seeming already like a distant memory.  But the feeling of thankfulness stayed with me.

I am thankful that I was able to be there, helpless to do anything though I was, while she clung to my fingers and processed whatever it was that was overwhelming her.

I find myself realizing more and more these days that just being there is sometimes far more important than anything I could do to try to make things better.  I may not be able to fix everything, but I can simply stay by her side and wait for the storm to pass.

16 comments:

Chrissy S said...

You are such a good mom. Mae is lucky to have you:) Understanding a problem is 50 percent of the solution. Mae is so beautiful. God bless.

Anonymous said...

I think you could send this into the "Lives" column in the New York Times Sunday magazine (possibly shorter). People hear about autism, but they don't know how it "works," what children are feeling and why, and how parents cope.

Lucy

JoAnna Wahlund said...

I agree with Lucy. Beautiful piece.

Amelia@One Catholic Mama said...

This is a beautitful piece! And you are such an amazing mom for being so patient and gentle with her.

Anonymous said...

Agreed! This is excellent. I work with some kids at my elementary school that are on the spectrum. I love these kids. But such a good reminder for me as I tend to talk too much to help solve problems. Thanks. (Michelle)

Anonymous said...

Hey Shorty, Dad here.

Each second we live is a new and unique moment. A moment that never was before and never will be again... the moments spent with a child are the most important of all the other moments. We would all love to be so wise and so patient as you, but we can't you have 2 very special gifts from God. One is Maggie the other is putting her in your care. I love you,
Dad

Anonymous said...

Do you think she had a bad dream? Do you think going into a dark closet with her have helped (to eliminate the visual and audio stimulus)? Does going under the bed help for her (the cool floor, the confined space)?
This must be so hard, because you can't comfort her in ways you are comforted, but must rely on others to help you know what is going on. So hard. I'm praying for you.
God Bless. ~ Bonnie

melody said...

Love this post, Cammie.

Anonymous said...

Why would anyone say not to seek a diagnosis? Any mom would want/need to know why her child wasn't developing typically and what she could do about it. You're a good mom! Hang in there!

Heather said...

So beautifully stated. When my son was that age, we didn't have the diagnosis. We didn't know what was going on. You're right, it is a gift to know, to be able to learn and to understand. Thank you for writing this.

Anonymous said...

I was thinking about how Mae has taken the sheets off the bed. I was wondering if she would like a satin or satin- like sheet and pillow case. (I know there are other fabrics that are smooth and cool like satin, but I can't think of the names of them just now.) Just a thought.
God Bless. ~ Bonnie

Jacqueline said...

Awww, my eyes are tearing up for your poor Mae! I am learning so much about autism by reading your blog. I never knew it was such a complicated syndrome. (Is syndrome the right word?)

You are SUCH a good mama - she is so very blessed to have you. I know what you mean about feeling lost, at your wits end, and guilty, but you never give up and *that* is what matters.

Hafsa said...

It is so hard figuring out what works and what doesn't with raising an autistic child. We have had many days and nights like this. And the only thing I've found that works is letting my daughter go through it. I have to give her her space and it is so hard as her mother to not be able to comfort her like I can do with the other children. I'm happy to have the diagnosis as well. I'm not sure why anyone would want to just keep things the way they are. This is such a true and honest post.

Ann Seeton said...

This is beautiful. Think Asian design for her space. Clean, simple but lovely in the stark simplicity. So peaceful. Like the serenity of a stone garden.

will kenderdine said...

There's a great post from Wendy in the Savette.com website,
she shares how items like Cuddleuppets can give sensory comfort to autistic
kids. You can see more about these soft and snuggly comforters and the joy they
can bring to kids at http://handi-dandi-crafts.com.

will kenderdine said...

Sensory comfort for autistic kids can come from fun options
like the Cuddleuppets, and Wendy shares more great insights at her Savette.com
website. You can sneak a peek at these soft & snuggly comforters at http://handi-dandi-crafts.com.