The girl who loved wild horses - continued

Hello, I was away from my computer yesterday so, I'm back to continue my story today.
Thank you all for the thoughtful and lovely comments you left, they made my heart feel so full.

Note:I realized as I read over the first part of my story, that I wasn't very clear about when we received the Sensory Processing Disorder diagnosis for Pony Girl. For the sake of clarity and to help with consistency, Pony Girl was diagnosed a little over a year ago.
So, what does it all mean... this diagnosis, this brave new world, this grand adventure? To us, it means finding out all we can and always trying new ways to engage. SPD is a broad diagnosis and can mean something different for every person affected by it. It has often been misdiagnosed as ADD or ADHD. Some children with SPD are on the Autism spectrum. While that is not the case with Pony Girl, (or so they tell me) I do have a family member with Asperger Syndrome and I think that background helped me when Pony Girl was diagnosed.

What does it look like? Speaking only about my personal observations with my daughter; it can look like a rainbow on some days, and like a hurricane on others. My daughter has trouble filtering information and stimulus. She receives it all and seems to need to make sense of it all at once. Young children have poor impulse control generally, for Pony Girl that is exaggerated. Sometimes it seems as if she is absolutely compelled to touch, move, run away, throw, feel, and get into everything in a 20 foot radius. It often means that she is unaware of personal danger and safety can be be a real issue.

In places of great sensory stimulus, say for instance the grocery market, she is overwhelmed with all the lights, colors, sounds, and movement. Shopping is hard, I'm just gonna say it. I have had to learn to become a sort of shopping Ninja when at the store with my girl. She's a runner, and I have learned to leap carts in a single bound, to navigate crowded aisles with the swiftness of a cheetah, I have honed my tackling skills to an art and I have gained an almost steel like resolve in the toy department, almost. I have also discovered my zen mind when my little screaming mimi draws the stares of the locals. Yup, that's me on the floor of the market physically restraining my kicking 5 year old (who has the strength of Hercules by the way), you may move along now. It isn't always that severe by a long shot but, it does happen.

Along with being easily over stimulated by sensory input, she can suffer from a lack of sensory input as well. Sometimes I have to remember that she needs to engage in "hard body work", pushing and pulling heavy things, wrap her up tight like a burrito in a blanket, squish her, wrestle her, have marathon dance parties. Her need for tactile engagement is significant, which usually means making a mess. Playing with flour and water, smearing anything goopy, rolling in the mud, shaving cream in the bathtub, etc. it's all good stuff.

Her gross motor skills are significantly affected, I mentioned before about the bumping into walls and furniture. We had a physical therapist for a while who worked with her. Now, she has just been assigned adaptive P.E. and I am grateful for that.

Our transition into Kindergarten was another eye opener. The first few weeks of school were very challenging. She was a galloping horse in the classroom, neighing and snorting while all the other kids were doing their work. She tried to walk out of the school on her own a couple of times. The cafeteria was too big, too noisy, too bright...she would eat her lunch under the table and then run away. Her learning delays were made very apparent.

To be honest, it was a difficult time for me. I had some very down days and felt a little helpless and sad. Then, I picked myself up, dusted myself off, and went to work on how I could help. As a family we brain stormed and I renewed my fierce mama ways. I was a mama on a mission! Fortunately, I was not alone. We are very lucky to have a school that is working with us. The special education team is doing their best despite underfunding and large case loads. We have all come up with ways to communicate and improve the school experience. As a result, Pony Girl is thriving. At our recent parent teacher conference, it became clear just how much Pony Girl has accomplished, how far she has come, and how much hope and excitement there is for the future. It is very clear that Pony Girl is adored, all the other kids in her class have taken her under their wing and help her in any way they can. That just makes my heart sing!

Why am I writing about this now? It is a very personal story and while I am protective of my family's privacy, it is a big part of our everyday life - I am constantly talking about it to teachers, doctors, therapists, other parents etc. and it felt a little strange to leave it out completely from this part of my life. Not that I was hiding it but rather, it felt like something was missing. It isn't what this blog is about but, I didn't want it to be something I couldn't talk about either.

I struggled for a while with my decision to share this, my hesitation was understandable. I did not want my readers to think, "Oh, poor girl." for she is hardly that! Recently someone said to me, "I bet you sometimes wish that she was just normal." The comment broke my heart a little bit; for what is normal? I have never wished for one second that my child be anything other than herself. I want her to know that who she is, is more than enough. I want to help her succeed and provide her with all I can to help her make her way. I don't want to change her and I will fight to make sure she doesn't feel less than, and I never ever want her to lose her spark.

I believe that her...
tenacious determination
bombastic enthusiasm
boundless energy
wild imagination
gusto for life
insatiable curiosity
crazy humor
weaving ways
alarming cleverness
fearless exploration
left of center view
and blessedly happy nature
are gifts she was given, what she was meant to have. Qualities that will serve her well through her life and will guide her to success. It is simply who she is and she is wonderful! It is my job to help her know this.

As parents, we are our child's first teachers, we are their voice and their champions. We know our children best and it is up to us to not be swayed by doctors, relatives, or well intentioned passers-by. Learn all you can, get a second opinion, be a bother, make phone calls, keep digging, ask for help. Just keep going, one day...one moment at a time. Treasure each gift and know how lucky we are.

Thank you all for coming along on this journey and letting me share a part of our life with you.

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.