Tuesday, November 30, 2010

The Girl Who Loved Wild Horses


It's only fair that I should tell you right up front, you should grab a sweet-salty snack and a cup of something thirst quenching...
For today, I am going to tell you a story. It is a true story that I have been working up to tell for some time. A story that started about 6 years ago, I reckon. It will take two whole posts to tell it. It's an odd kind of story because it only has a beginning, so far. There's no middle, or end, or tidy summary to bring it all back home.

It is a story about being a mama, a story about not 'hiding under a pile of coats' - but mostly, it is a story about a girl who loves wild horses.

Long ago, but not so long ago that I don't remember it perfectly... The Engineer and I, happily ensconced in our little green cottage, had a conversation and made a decision. We weren't going to "try" so to speak, we were going to just stop trying not to. Little did we know that someone had already got the memo a couple of weeks before us. I do think the engineer was a hoping there would be more 'work' involved in the getting there but, we were both thrilled.

It was a hard pregnancy. I was very tired and very sick. I couldn't even drink water, I had to have water with bubbles and lemon to get my recommended daily intake. There was one week where all I could get down were chocolate milk shakes, ok, that wasn't the worst week. It's all a bit of a blur now though, I mean, it's heavy work, I was making a person. That's how I thought of her from the beginning, as a person. Of course I imagined a baby, a bit of fluff and deliciousness; still, there was a person there, of us - but wholly herself.

The morning/afternoon/night/morning she finally made her debut, the most beautiful daughter in the entire world arrived. We held our breath until we got home.

It is probably best if we jump forward a bit, otherwise I could easily regale you with endless scrumptious baby stories, sleepless nights, how every time we went to market people would approach us and tell me what a remarkable child I had - 'Like a sunflower!' 'That one will change the world!' Oh, see how I managed to slip that in?

This fearless tree hugger, climber of slippery slopes, determined escaper of fortresses, super star unparalleled, rock n' roller, mover and shaker, leap before looking dynamo, full of gusto, stubborn ingenious wild child, laughing love bug, force to be reckoned with, complex little person ... was my kid!

When she bumped into walls and furniture, I attributed it to her leap before looking credo. When she ran into the street after many warnings against it, I thought her fearlessness was to blame. When she discovered how to unlock the door and make it a block away before I could catch up with her at 2 and a half years old, I was terrified and we installed a safety lock on the front door. Tenacious and determined, she was a child that needed constant vigilant supervision to keep her from tumbling down the rabbit hole or hopping a plane to Mexico.

She hated the vacuum cleaner as if it were a fire breathing dragon. Bright lights bothered her. She loved water like she was a fish. She could not ever resist dipping her hands in her dish of yogurt and rubbing it all around like lotion. To get her attention, I often had to hold her shoulders while I talked to her, even then she would have a hard time focusing on me. Looking back, I can see many things more clearly than I could at the time.

I started to notice that one of her eyes seemed to wander or not focus along with the other eye. When I brought this up to our new pediatrician, he told me not to worry about it, that everything seemed fine. Of course that is what a mother wants to hear but, 'Dr. Handsome's' cavalier attitude didn't quite sit right with me. When I brought up some other concerns, he told me not to overreact. Now, hold on a minute. I am not one to overreact, I don't rush her to the doctor when she has the sniffles, I don't freak out when she has a fever but, I had some real concerns here and I was being brushed off.

A couple of weeks later, I took her to a pediatric eye doctor to alleviate my niggling concern. Lo and behold, the child has astigmatism and needed glasses right away. That was not the end of it though. As I said, there were other concerns.

A huge debt of gratitude is owed to one preschool teacher extraordinaire. Due to her attention and vigilance, she had concerns of her own and very kindly talked with me about them. Because of her experience and her exceptional help, we found our way to the county's early childhood development team. An evaluation was done, along with heaps of paperwork, and the outcome was a diagnosis of Sensory Processing Disorder.

-From Wikipedia: Sensory processing disorder or SPD is a neurological disorder causing difficulties with taking in, processing and responding to sensory information about the environment and from within the own body (visual, auditory, tactile, olfaction, gustatory, vestibular and proprioception). For those with SPD, sensory information may be sensed and perceived in a way that is different from most other people. Unlike blindness or deafness, sensory information can be received by people with SPD, the difference is that information is often registered, interpreted and processed differently by the brain. The result can be unusual ways of responding or behaving, finding things harder to do. Difficulties may typically present as difficulties planning and organising, problems with doing the activities of everyday life (self care, work and leisure activities including work and play), and for some with extreme sensitivity to sensory input; sensory input may result in extreme avoidance of activities, agitation, distress, fear or confusion.-

But what does this mean really? And what is going to happen now? What do we do, where do we go, who do we talk to?

As I have said, I am not a person that often overreacts but, on the rare occasion, I have been known to 'hide under the coats'. I was torn between the two for a minute. I had to think... what did this change about my child? Nothing. What did this change about me being a mama? I didn't know yet but, I figured I had better find out and do the best that I could. So, now I just needed to figure out the first step.

First things first, we say sayonara to 'Dr. Handsome', and say hello to a whole team of doctors, therapists, teachers and other mostly helpful folks. Read a lot, ask a lot of questions, try to understand the paperwork, have meetings, filter information, go with your gut, laugh, cry and generally put one foot in front of the other. And still, it's a bit like stumbling around in the dark.

The Engineer and I kept wondering to ourselves, what is it like through her eyes? If we could for just a moment, be her and understand...then maybe we could help ourselves be better parents to this amazing girl.

Stanley Greenspan, the author of "The Challenging Child", has an interesting analogy to help imagine what having SPD might feel like.
"Imagine driving a car that isn't working well. When you step on the gas the car sometimes lurches forward and sometimes doesn't respond. When you blow the horn it sounds blaring. The brakes sometimes slow the car, but not always. The blinkers work occasionally, the steering is erratic, and the speedometer is inaccurate. You are engaged in a constant struggle to keep the car on the road, and it is difficult to concentrate on anything else."

Everyday I am learning new things about this disorder, and how it manifests in my daughter. I can't speak for what it means to any other child, parent, or family. I wont get into any controversy that surrounds this disorder. I can only tell you what it means to me, what I feel and experience as a mama.

This feels like a good place to pause and take a deep breath. You have been so kind and I thank you for staying with me up to this part. The story will be continued in my next post, in which I tell you how going to the market has turned me into a Ninja.

P.S. The title of this post was taken from Pony Girl's favorite book "The Girl Who Loved Wild Horses" by Paul Goble. I highly recommend it.

21 comments:

Clara said...

You brave soul for speaking about this so openly and sharing it with us. I am understanding your situation because of the preciseness of your explanation of the disorder. I look forward to your next post to further learn about it. I think this is important too to make you feel better in what you are doing as a Mom. Have a wonderful day.

Sherri B. said...

There is a lump in my throat and my eyes are smarting..I hardly know what to say..I do know that you are a wonderful, loving mother and you will learn all that needs to be known about your very precious little girl. You will always have a support group with us, your readers, and I thank you that you felt safe sharing something so huge in your life. We will be here at every step that you must take and will never grow weary of your words.

I am sure you probably have a support group of other parents facing the same issues and they will no doubt be a wealth of information.

You all will stay in my ongoing prayers..the prayers that never cease.

One foot in front of the other, day by day.

lifeshighway said...

Your bravery for sharing this story is astounding. Perhaps somewhere a struggling Mom will read this and get strength from it. I believe you could turn this into an article for a health magazine. Give is some thought.

june at noon said...

Alex, I have a good friend whose son has sensory issues. It's sort of undiagnosable in his case, but a challenge all the same. (On the flip side, he has many special qualities that come with it too.) They are seeing great progress with the neurodevelopmental approach, but I know from observation how much work goes into it. Bless you for being a loving, involved mama to your sweet girl! (Are you familiar with Amalah? Her son has more severe sensory problems and often blogs about it.)

Cath @ chunkychooky said...

Oooh, I am crying at this beautiful post. I know it has been hard to write and I think by telling us all maybe we can have a better understanding of SPD. It is hard to share something so personal about Pony girl but your motives are true and real and I am giving you the biggest hug from over here for being so brave in writing this and helping us to understand. xxx

beck said...

Thanks for this beautiful post. I haven't heard of SND before, well done for persevering. Your writing is so heartfelt, thank you for sharing this part of your life with us. I bet Pony Girl is an amazing person, like her mum xo

Flaming Nora said...

Oh what a moving post. You are so brave. Brave to write about it, brave to fight for the right diagnosis. Doctors can be fairly complacent. The over reacting mother routine flows a little to glibly from their mouths. My brother was born with a form of club foot. And from the moment he was born my mother mentioned it to every medical person who would listen. After about 5 doctors one, who incidentally walked with a limp, actually listened to her. A year of operations later and he was ok.
And you are especially brave to not let it halt you and continue being a fab mum to a beautiful little girl. Much love to you all. xxx

Little Ted Canvas said...

Firstly, you sound like a pretty awesome mama the way you are finding your way through this. It sounds like you have a pretty good bunch of people around you to help & guide you through the unknown. Listen to your heart & your gut, a mamas intuition is always right! You daughter sounds pretty amazing herself, hugs to you x

Kate said...

Phew, what a crazy, full on post to write!
What a crazy thing that you had to fight to get to your truth.
She's your kid and that makes me certain that you'll all get through this well and find your special way to deal with it and deal with the world.
She is so very lucky to have come to have such wonderful, insightful, adoring parents and I have no doubt what so ever that the three of you together can conquer the world. XX

mamas collection said...

Your followers support you in your endeavor to embrace Pony Girl's view of this world... may we all learn grand lessons from her perspective...Blessings on all of you....

jus said...

Perception is everything isn't it. Getting to know you is a real pleasure, as is Pony Girl's 'over it' face from the previous post, x

Aussie-waffler said...

Goodness Alex, thank-you so much for sharing your story in such an insightful and comprehensible way. I too had never heard of SND but I think that Pony Girl is a very lucky girl to have parents who are trying to see the world as she experiences it, not an easy task I would imagine. I'm looking forward to reading the second installment. x

Tas said...

Thank you for sharing such a personal story.
Bless you and your family.

A Bun Can Dance said...

Dear Alex
I want to cry and give you a big hug. I want to take all three of you and give you an enormous hug altogether. This is such a heartfelt post you've written and you've been so incredibly trusting and brave to tell us all this. Thank you for putting your trust in us. You know I am here for you and all your readers will be too. It is an unknown land you journey through, and as the quote says, for Pony Girl the world and being part of the world is not how any of us can imagine. How can we begin to imagine what her experience is? I keep thinking of one part of your post, where you say you are following your gut instinct - this is all we can do, and I hope that your intuition, your inner guidance shouts loud and clear to guide you on your way.
Take care,
Denise x

diane said...

great- i have been too busy/tired/full of excuses to catch up in blogland for months now- and the minute i sit down to check out my favorite lola site i get all teary eyed again!

my love to pony girl and my heart is with you.

looking forward to part 2.

xoxoxoxo

Floss said...

Thanks so much for this. Son 1 has a number of difficulties - I think you and I have emailed about a few of our struggles before, but I have to tell you that I've found this post so moving and helpful, as both a mum and as a Special Needs teacher. When I can, I'm going to post something about Son 1, but at the moment everything is a bit too much for a post like that. Still, I'm really glad you have shared this and be assured I'm thinking of you and your super daughter, as always.

Bobo Bun said...

Your love for your daughter and for being a mum shine through in this post. I found it very interesting to read about something I knew nothing of and thank you for being able to write and share it so eloquently.

Lisa x

Mom L said...

What an incredible, loving, and yet informative post. Like most of your other readers, I was unfamiliar with SPD. This makes Pony Girl all the more awesome to me, and puts you right up on the pedastal with the wonderful moms working with special needs of any kind. I admire you strength and courage, but above all I understand the love you and the Engineer pour into your family.

Grandma Nancy in Iowa

Michelle said...

Dear Alex...
All I can say is
"thank you for sharing"...
I know how hard it is to get something that is so important in your lives and actually share it with everyone...
Pony Girl is a treasure...
A very big part of your wonderful life...
I know she is everything and so much more to you and your husband and family...
And I know Pony Girl is thrilled you are her Mama...

m.e (Cathie) said...

such a wonderful & personal post, it gave me goosebumps.
thank you for sharing & allowing us to get to know a little more about your little one.
Pony girl is one lucky girl to have such a great mum.
many hugs to you ♥

Serenata said...

Wonderful heartfelt post. Was it hyperemesis you had while you were pregnant? I ask because I was terribly ill throughout mine and couldn't keep anything down, not even water!

I too have a child with difficulties with how they perceive the world, he has autism - I think SPD is on a similar spectrum. Certainly some of things you describe sound so familiar.

{{hugs}} She is very lucky to have you as her mum and hay (meant to spell it that way) anyone who loves horses has got to be great!