Thursday, December 2, 2010

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.

25 comments:

greenrabbitdesigns said...

I have read your last two posts with interest and one thing I know for sure is that your little girl is extremely fortunate in having you as a mother! Of course you wouldn't change a thing about her because that's what makes her who she is, the little girl you love and cherish.
Vivienne

lifeshighway said...

As a parent of a child who is bi-polar your story has stuck so many heart strings. We went through it all and more. One child was blessed by "normalcy" the other by a deep capacity to love, a brilliant mind and wild creative skills. Who is to say which is the luckiest.

Pony Girl is fortunate to have a supportive family and community. All will be need as she grows and eventually develops into a young woman. Your unconditional love will be her anchor.

God bless

june at noon said...

Having watched my friend with her son over the last year (his sensory "stuff" is in the autism spectrum), I have a real appreciation for what you're experiencing. It's very clear, even prior to your sharing of this story, that Pony Girl is a fantastic kid with a special mama--what could be wrong with that? I have no doubt you'll fly through this challenge with grace!

Itchin' Stitchin' said...

Thank you for sharing this! My husband and I always spend a lot of time with our children (we have 3) and never realized some of the characteristics of SPD, in fact we never heard of it until our oldest starting going to school.
During our first ever parent teacher conference it was brought to our attention that our son may have mild SPD. Like Pony Girl he had trouble in stores - especially crowds or loud noises (he would cup his hands around his face to block everything out), had a hard time focusing on the task at hand (I always thought it was just because he was social), and often ran his hands down the wall when he walked to and from class.
He is now in 2nd grade, and though he still has trouble focusing, we know how to help him. He has made huge accomplishments. This doesn't mean that we still don't have shaving cream parties in our tub (the people at the dollar store must think I am the hairiest woman alive). We often ask what we can do to help. I have asked if he would like me to make a weighted blanket for him but what he prefers when he is at school is to chew sugarless gum.
These posts really reached out to me. I felt ashamed that I didn't notice SPD sooner but when you love your child you don't notice anything is wrong, you just love them entirely. So thank you, thank you, thank you for sharing this personal story. Keep smiling because Pony Girl is destined for great things.

Flaming Nora said...

well, I have read and re read both this one and your last post. Trying to understand it all. And I have decided that Pony Girl gets that wonderful long list of personality traits from somewhere. All I can say poor old engineer I bet he doesn't get a moments peace and quite with the pair of you cooking up a storm! Lucky boy!

Wendy said...

Thank goodness Pony Girl has such wonderful parents. And, really, isn't that our job as parents--to accept our children as they are and help them learn how to use their strengths? Blessings to you all!

jus said...

Bloody hell... you and the delightful dancing bun keep getting me all teary at work... OK the obvious rejoinder is that I really shouldn't be blog surfing at work but I've been hanging out for part 2. Again, a pleasure! x

Colette said...

I have just read both of these posts and am filling up with emotion. It's clear that as parents you are both the best that Pony Girl could ask for.
Your passion, drive, spirit, and responsibility shines through in these posts, I'm overwhelmed.
I've not heard of SPD before and so pleased that you've been able to share this with all of us. This surely reminds us all that everyone is different, with different ways of dealing with things and approaching life.
With you behind her that girl will shine and thrive, she's lucky to have you both, and you to have such a wonderful girl.
Sending you all huge hugs, xx

Mom L said...

Alex, give my love to Pony Girl - your entire family is amazing. You are probably the only mother I've known who would pass motherhood with flying colors without a manual! We all struggled through various problems with our kids, but I sure didn't do it with the grace that you have.

Love and hugs,
Nancy in Iowa

Sherri B. said...

I think you probably know how fond we all are of Pony Girl. Her wonderful personality shines through every photo you share and brings a smile to my face everytime I see her. It is a blessing that so much has been learned about these different issues and ways to work with them...I must confess that I can relate with Pony Girl on a few things, like running off in stores and doing dangerous things ...I wasn't diagnosed with ADHD until about 10 yrs ago, which explained the really strange things I did as a child such as, jumping out of second story windows just to see if I could and sticking a charm bracelet into an electrical outlet on the kitchen stove (while wearing it). Even as an adult when things get boring in church, little Sherri wants to run down the isle screaming (I haven't done it yet).

You are a sweet and wonderful mama and you will always know what to do for your little girl.

We are all unique..what is normal anyway.

Thank you for thinking so much of us that you want to give us a better understanding of your life. Also thank you for this valuable information that some of us knew nothing about.

Hugs to you, The Engineer and Pony Girl.

Clara said...

I just had to read this second part of your post. You are a top notch Mom with a top notch husband and a top notch little girl. Everything you do with pony girl is a spoke in the wheel of true love. You are helping yourselves and your daughter but too, the medical profession (who learns from this) and everyone else touched by your family. I have my own story of a child but it's tucked away for now since I've already dealt with it in my life and I can recognize the same determination and love and logic you have. Be brave and soldier on for pony girl. If ever you are able to find rest, please accept it with open arms so you can recharge your batteries for pony girl. Thank you for being such a wonderful person in this world.

Mare said...

Who wants to be normal? ALL of the earth shakers in the world down thru eternity have been...different...thank Goodness.. anything but "normal"... I'm glad you wrote about this. I just wanted to tell you that, and that i just love you and Pony Girl...Happy Holidays... love,your crazy, abnormal, eccentric friend, mare

Little Ted Canvas said...

I really don't know what 'normal' is, and like you I wouldn't want my boys to be anything other than who they are! Surely all parents would feel this way, it amazes me that someone would even say that to you. It sounds like you're doing a wonderful job, being a brilliant mum & I love your description of pony girls fabulous qualities, what a gem!

Ina-Mari said...

Wow, I sure wish I had a mom that believed in me, the way you do with your daughter. Your daughter sounds like a beautiful girl!

A Bun Can Dance said...

Dear Alex
This is so very touching and incredibly honest of you. I can imagine the looks and comments in the aisles of the supermarket. I can also imagine the suggestions and opinions given by family, friends and those who have no connection with you at all. Your recount so clearly shows that it is incredibly challenging, exhausting but also magical and heartlifting to live with a child's special needs 24 hours each day. When I was teaching there were families struggling and rejoicing with their special needs children and wanting so much to do the right thing for their child. You are doing so much, giving so much, creating so much to help Pony Girl to find her way in the world. And surely that is what all parenting is about - helping our children to find their OWN way in the world - a journey which is right for them and only them. You are an inspirational mother and I know I'll be asking for all kind of guidance from you when our adopted children arrive - they'll have their own unique needs. Take good care Alex, and thank you again for trusting us with your heartfelt words.
much love to you,
Denise x

Lindsay Jewell said...

Your daughter is a beautiful person. And so are you.

I'm glad you shared this.

Tas said...

There is so much I want to say and yet I am speechless. You are amazing. As is the Engineer. As is Pony Girl. :)

Michelle said...

Thank you for being so open about your life with your beautiful spirited child. From childhood, I suffered from anxiety to a great extent, but wasn't diagnosed until my early twenties. Although different from Pony Girl, I do understand what it is like to have challenges in coping with the stimuli in daily life.

You are to be commended on your attitude toward your daughters disorder, as her sparkling personality shines ever so bright through her photo's. I can see that she is not going to let life pass her by, but engage in it to fullness. What a joy that is to see!

And normal? What on earth is "normal?" Indeed, we have all been created unique, special and truly priceless. Continue to love on that sweet child, as all of us will continue to do out here in bloggerland also.

Blessings,
Michelle

diane said...

pony girl is one lucky little angel- and i can only hope i will be half the mom you are.

Serenata said...

I should have read this post as well, before I commented on the first as you re-iterated much more clearly what I was trying to say about ASD.

Fantastic positive post once again, and I oh so no that shopping ninja person!

Pia K said...

had no idea (of course)... this was a fantastic, heartbreaking, hopeful, honest, touching and a lot more read. it is good to write, to read, to share. so thank you! and with all the not-so-common-perhaps obstacles this comes with - i still so hate that word "normal". because who wants to be that... hugs and thoughts.

:o) mg said...

Wow. She was definitely born to just the right mother. God bless you!

Janee Lookerse said...

After reading this, I feel 1000x stronger about that email I sent you . And I'm not gonna lie, I had a good cry too. You are amazing my friend.

xoxo
Janee
yellowbirdyellowbeard.blogspot.com

Janee Lookerse said...

After reading this, I feel 1000x stronger about that email I sent you . And I'm not gonna lie, I had a good cry too. You are amazing my friend.

xoxo
Janee
yellowbirdyellowbeard.blogspot.com

Deb Robertson said...

Oh my goodness there is so much I want to say about this, and I'll come back and write some more I think, but I just wanted to say I TOTALLY GET YOUR ZEN MIND, that bit made me laugh out loud. I have been there, I can totally zone out everyone else while I manhandle my child here or there!!! Thanks so much for sending me the link to this, it's so liberating to read someone who actually understands. Also you made a wonderful job of writing this, I have found it exceedingly difficult to explain it on the blog.
Love and hugs
deb xxxx