brooke order

I’ve been reminded an awful lot lately that autism is a developmental disorder. Yes, we all know that, but we know it as one blurry word, don’t we? Autismisadevelopmentaldisorder.

Sometimes we miss the most important part.

Autism is a developmental DIS-order. Development happens IN A DIFFERENT WAY than the typical order of business.

‘A’ does not necessarily lead to ‘B’. Sometimes, ‘A’ leads to ‘F’, then back through ‘C’ and ‘D’ long before ‘B’ shows up. Sometimes ‘B’ doesn’t show up at all, but ‘R’ does and turns out to be a doozy.

Our kids development is not delayed. It is disordered – differently ordered.

For me, this has been a HUGELY important distinction. I think we lose a lot waiting for our children to ‘catch up’ to their peers. One can’t catch up to someone who is walking on  a different road. It simply doesn’t work that way.

But God, our kids DO change and grow and learn and develop, don’t they? IN THEIR OWN WAY, IN THEIR OWN TIME, WHEN THEY ARE READY.

The following is from a post I’d written in August of 2009. It says it all. Which is good, because I’m out of time. :)

***

I walked around Brooke’s room tidying things up for bed. The musical instruments had quieted their songs for the night and were put back in their wooden crate one by one. The books promised to keep their stories to themselves and settled into their places side by side on the shelf. The room was bathed in the soft light of the bed-side lamp. All was quiet, but for the freshly scrubbed little girl chattering away on the bed.

“OK, friends,” said Pablo the blue penguin, “You would all line up for picture time.”

Slender little hands deftly moved the ‘friends’ into place. They lined up along the pillow and presumably smiled.

“OK now. You would all say, ‘Cheese’!”

She stretched Pablo’s little arm as far as she could up to his face. “Say ‘Cheese’!”

With a “Click!” the picture was taken.

“Good job, friends,” said Pablo. “You said Cheese!”

I tried to wrangle the Backyardigan friends for bed, but she wasn’t having it. “Oh, no. They would stay with me,” I was told in no uncertain terms. I settled onto my knees next to the bed as if in prayer and watched.

Uniqua was the first to go. She slid down the pillow with a “Wheee!” followed by an, “Uh oh! I bumped my head. It hurts me very much!” Her voice was deep, even slightly raspy, just like on TV.

Tyrone came quickly to the rescue, air-lifted into the scene by a tiny arm. “Oh no. Uniqua, are you OK?” A deeper voice, appropriately boyish. He leaned in to check on his friend.

“I am not OK,” replied Uniqua. “I bumped my head and it hurts me very much.”

“Oh no! I will give you a hug, Uniqua,” said a very concerned Tyrone.

Once they were securely intertwined, they were set aside – apparently to hug it out.

Tasha sprung into action from her place at the top of the pillow. She flew down with a flourish and a twist. “Ow!” she cried out. “I bumped my knee and it’s ba-leeeeding!”

Pablo swooped in. “Do you want me to take the blood out?” he asked.

“Yes, please,” she answered politely. Gotta love Tasha.

A pretend band-aid and a hug sent them on their way.

I don’t know how to describe everything going through my head or my heart while I watched this scene unfold.

“She came to us with absolutely no functional play skills.”

Her integrated preschool teacher. She had marveled at the fact that she did not know how to play AT ALL.

Those words haunted me for years. It seems they still do. I remember wondering .. Don’t children just play? Is playing a skill? Is it something you learn? I was flabbergasted. For the millionth time that year, I felt like I had dramatically failed my child when I heard those words. How could I have not noticed that she didn’t know how to play?

But damn it all, here was my kid playing. And playing BIG. This was elaborate, dramatic, pretend play. Characters interacting with one another as part of a grand scene. Voices! Different, distinct, appropriate voices for each character! A sentence ran through my head.

She’s catching up!

Followed by another one.

“This is a disorder, Jess. Not a delay.”

And another.

“Her development will not ‘catch up’, per se; it will simply happen in a different order.”

The first specialist we ever saw. The speech therapist who directed us to the autism clinic - Do not pass Go, she had said. Do not collect $200. Just get help. The one who spent twenty minutes with our baby and knew. Just knew. And she was right about so many things. Not a delay; a disorder. A different order.

I’ve come to dislike disorder. I prefer Brooke-order. She shows us time and again that she will come to it, whatever ‘it’ is when she is good and ready. I guess our humble job is simply to make sure she’s armed and ready when that time comes.

Apparently she can take it from there.

Ed note: There was a great conversation in the comments on that post. I’ve copied it in part in the comment section below.

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25 thoughts on “brooke order

  1. Wow. Truly amazing. Things most parents don’t know to marvel at and cherish.

    Comment by deb — August 13, 2009 @ 6:50 am |Edit This|Reply

    You’re absolutely spot on. Brooke will take it from there. We’re seeing that more each and every day. She’s Brooke and she’s amazing. She’s been giving you especially wonderful gifts leading up to your birthday (I had to sneak that one in). Happy Birthday, Jess!

    Love,
    Mom

    Comment by Mom — August 13, 2009 @ 6:30 am |Edit This|Reply

    I’m hoping she’ll write a self-help book one of these days. One entitled: “I Would Give You Tips Please.”

    Subtitled: “Oh yeah.”

    It’s so nice reading these descriptions, she’s clearly experiencing some major changes.

    Comment by M — August 13, 2009 @ 7:50 am |Edit This|Reply

    That’s awesome! Forget that, thats HUGE!

    I love the title of the book M, very clever!

    Comment by Lisa63 — August 13, 2009 @ 8:09 am |Edit This|Reply

    M – lol!! that’s too good.

    god, i’d love to read that book

    Comment by jess — August 13, 2009 @ 7:53 am |Edit This|Reply

    What a post! It’s really vert awesome! Sounds like she is growing up and growing into her own!

    It is funny how there are things we don’t notice about our own children. I was shocked to learn not only did my child have Autism, but that he couldn’t learn from a teacher. What had I been doing for the last 2 years? If he couldn’t learn, how did he get to where he is??? Then I was introduced to the word disorder. Not only did he have one, he was disordered and disorganized. I never noticced. Never.

    BTW… hearing the stories of older kids (older than T, anyhoo) and their successes gives me hope and gives me strength.

    Comment by Nicole — August 13, 2009 @ 9:31 am |Edit This|Reply

    Gawd can I relate to this? I felt horrible when I realized Charlotte didn’t know how to play! Obviously I had just ignored my child otherwise why would she have NO idea how to play? Oh I beat myself up something terrible over that.

    I even wrote a blog post about it a long time ago. http://goodfountain.wordpress.com/2008/07/04/lets-pretend/

    So I know just how you feel about sitting back and watching Brooke in amazement. It’s just awesome, isn’t it?

    Comment by Good Fountain — August 13, 2009 @ 8:34 am |Edit This|Reply

    Brookeorder. Yes.

    love.

    Comment by pixiemama — August 13, 2009 @ 9:50 am |Edit This|Reply

    OMG.
    OH MY GOD.
    No really, OMG. no one’s presented this to me as a DIS-order, in the sense that mine’ll do things out of order. That kind of makes my brain hurt when i add in the regressions we’ve gone through, but its extremely comforting as a concept. Because implied in Disorder is that even tho its happening out of order, its all going to happen. They’ll still get to the finish line, right? Just in a different order

    Comment by joy — August 13, 2009 @ 10:53 am |Edit This|Reply

    I love brooke-order, too. and the book title.

    and the play. love the play.

    Comment by karla — August 13, 2009 @ 9:58 am |Edit This|Reply

    Huh.

    I wish someone had explained things to me. It sort of makes me feel better knowing that our kids get stuff in a different order.

    I was working with “delay” all these years, and boy, was that frustrating.

    I like that Brooke has her own plan going. And her imaginative play sounds perfect.

    Comment by drama mama — August 13, 2009 @ 10:43 am |Edit This|Reply

    you know, this whole idea of breaking apart the ‘delay’ model meant a much bigger paradigm shift for me. when those words sunk in (they were in response to my ignorant question, ‘so when will her speech catch up’?’) they changed the whole visual for me. they did away with the entire idea of linear development. so, to my mind – there is no finish line. there are no lines at all.

    people often ask me which ‘end of the spectrum’ brooke is on. i try to explain that to me, the spectrum is more of a three dimensional sphere. some people have skills a thru d and challenges f thru l. some have strengths m,j and q and some have deficits p, r and v. it’s round, it’s malleable, it’s unpredictable. and so it is with development.

    i picture skills and tools and milestones all mixed together inside the globe. when they’re ready, armed with whatever tools we can give them from the outside our kids will grab them and make them their own. by definition, though, the globe has no ‘end’ – no finish line as it were. but i think in some ways, that’s the way it should be. hell, i’d hate to think that any of us was ‘done’ developing. i’m sure not and i’m 28. (or not)

    Comment by jess — August 13, 2009 @ 11:17 am |Edit This|Reply

    (responding to your latest comment) Thank you for accurately representing the paradigm shift. Different (motor) development is more true for those diagnosed with CP than ‘delayed’. I’ve explained this to more than a few over the years – parents who were annually beaten-up by the evals that said their school-age-child’s developmental level was 6 months. Gah! So.wrong. to contextualize children in that linear fashion when more is known.

    Yes, I’m still meeting people I want to be like when I grow up. (lol)

    Re: Play – lots written on this….but want to share this concept – play is behavior representing cognition with many distinct ‘towers’ on the 3-dimensional spectrum (excellent visual).

    Comment by Barbara — August 13, 2009 @ 1:42 pm |Edit This|Reply

    It’s so great to read these posts, Jess. I feel so emotional about all of it. I’m reliving the realization – the wonder – that Nigel was evolving, that he was somehow starting to cope with his sensory issues, that he was learning to play, to talk, that it was starting to come together. I’m so there with you. Love.

    Comment by Tanya @ TeenAutism — August 13, 2009 @ 2:05 pm |Edit This|Reply

    I much prefer “different order” to “disorder.” Let’s not diss on the order, people!

    Comment by Carrie Link — August 13, 2009 @ 2:52 pm |Edit This|Reply

    Thanks Jess for being such a special person. Your skills with words and your keen observations put to those words give so much comfort to so many others. As I read the comments I am brought to tears for the parents who respond to you and find solace in your writing.
    You are so special and so unique.
    Happy Birthday my little girl(all grown up).
    Love you,
    Dad

    Comment by Dad — August 13, 2009 @ 4:56 pm |Edit This|Reply

    Oh the JOY! My heart is full for you Jess and Brooke. I’m seeing similar things here and it just takes my breath away. Thank you also for reframing the “delay” into a “disorder” for me. ZING!I like this way thinking much better!

    Comment by pdxagray — August 13, 2009 @ 4:07 pm |Edit This|Reply

    Wow, that’s some pretty intricate pretend play Brooke had going on!

    There are so many different thoughts that ran through my mind as I read through all the comments. Mostly, though, I just want to say thanks for the paradigm shift away from “delay.” I don’t think I even realized how much I’ve been holding on to the expectation of linear development (skill A begets skill B begets skill C…) and age-equivalents. I *know* that Nik will be fine and that he, like Brooke, will come to things in his own time. Still, it’s been a really painful week around here and I SO needed to read your post today. Thanks! xo

    Comment by niksmom — August 13, 2009 @ 4:37 pm |Edit This|Reply

    I don’t like disorder either. And I don’t like dis-ease. And I’m not fond of syndrome.

    I do like Brooke’s Backyardigan scene. I LOVE it.

    And what? Is it your birthday?

    Happy Birthday to the owner of one of the best smiles I have ever seen on a human face.

    Love.

    Comment by Michelle O’Neil — August 13, 2009 @ 5:09 pm |Edit This|Reply

    Intellectually, I think about the different order. I like it. I understand it. The sphere thing is brilliant. Then, I’m watching JBear do something new. I gasp and think, He’s doing it! Followed immediately by, He’s catching up! It’s my emotional reaction. I can rationalize it away, but I’ll (we’ll) never take milestones for granted. Especially those elusive social emotional ones. I hope to one day replace it with, Yes, I knew he would do it!

    P.S. Happy Birthday, fellow lion. I would have chocolate, please. And, yes, new shoes.

    Comment by Brenda — August 13, 2009 @ 9:18 pm |Edit This|Reply

    I got kind of upset when I was told, quite recently, that I’m emotionally/socially “pre-adolescent”… something like 8-12 years old. My baby sister (shutup, she is my baby!) is 8, and if I’m completely honest… yes, I can see that she and her little friends are starting to surpass me, sometimes. It’s really, really hard to explain what it’s like to be in charge of groups of little ones and still, socially, feel lost. It’s okay, it’s just hard to explain. I’m not 8, though. I’m 21, and I have lots of other 21-year-old skills that those 8-year-olds don’t have, so how can you really compare?

    For example, maybe my ability to understand others’ emotions is no more developed that most 8 year-olds. But, my vocabulary for emotions is certainly more developed than theirs. Then, my ability to delay gratification (i.e., we need to turn off the T.V. now, girls, because we have to clean up by the time Mom and Dad are home) is at least closer to age appropriate. And I’m definitely more responsible than Kaylee and her little friends are. So, although I’m undoubtedly delayed in some areas, and those areas are pretty obvious, I’m also less delayed in other areas and not at all in others yet. And any given situation includes more than one skill set.

    Brooke sure has driven that one home… and as all of her other skill sets continue to develop, those play skills are going to come right along

    Comment by Lydia — August 13, 2009 @ 9:57 pm |Edit This|Reply

    lydia ~ thank you so much for that perspective. no doubt it’s tough to hear the comparisons, but you are thankfully obviously aware of how useless some of those comparisons can be!

    and if we’re being honest here, my eight year old often strikes me as far more emotionally mature than me! the other day i prompted her to gently chide a friend of mine – silly stuff. her response? ‘mama, i’m not comfortable saying that. it would be very disrespectful’. yup, she wins.

    Comment by jess — August 13, 2009 @ 10:27 pm |Edit This|Reply

    I love the Backyardigans pretend play! Wonderful, I enjoyed reading it so much. I like your thinking on the spectrum and development within it — it really is less linear and more of a sphere, a great way to look at it. My boys definitely have different strengths and their acquisition has been anything but linear. I also really appreciated Lydia’s perspective…

    Comment by KAL — August 14, 2009 @ 8:34 am |Edit This|Reply

    What a wonderful series of WOW moments you’ve been having lately! Not that I’m surprised, because you are the embodiment of WOW yourself, Mama Jess.

    Comment by mama edge — August 14, 2009 @ 10:18 am |Edit This|Reply

    Hi Jess, I am catching up on your posts in a “disorderly” fashion, but I just want to thank you for sharing this. First of all, Brooke’s play skills really are impressive. I can’t stop grinning because I know what a triumph that is for her (and you!). Also, I LOVE the concepts of “different order” vs. delay and the sphere vs. the spectrum. Parents I work with are always asking me whether their children are “high functioning” or “low functioning,” (terms which I’m not really comfortable with anyway). It’s always so hard to know what to tell them. Each child has a unique combination of strengths and challenges (just like neurotypical kids), so it would be wonderful if we could change the language we use in describing development. Thanks, Jess!

    Comment by Marie — August 31, 2009 @ 8:10 am |Edit This|Reply

  2. I love this post. Even though it seems like we’ve been living with autism forever, my daughter is not even 3, and we’ve just barely started. I know that this is a DISorder like you said, but sometimes I need reminding…thank you for that. We have delay along with the disorder as well…it’s complicated. I have a complicated little girl, but she doesn’t know that. She’s just Sam, and she will do things as she is meant to do them. Thank you so much for this reminder. :)

  3. Thank you for this! Just yesterday, I was explaining to someone how O could read and spell, but not really speak – that his brain was wired to do things in its own order, not in the order laid forth by Dr. Spock and the What to Expect lady. Just yesterday, he was acting out Wallace and Gromit as he watched it.

    Some days, I would fix it all – I would take away the delay and the disorder. But then I stop and think to myself of how much I would actually lose. Just like Christine said, he doesn’t know that he is complicated – he only knows that he is O, and that he is loved.

  4. DOAM, for me, the biggest message from this post is that they can do things that are “neurotypical” and “expected” of children, they just do it in their time. Nothing about this disorder is easy, not a thing. You get it all to well, I hear it in your voice/posts. You cherish the moments that are unexpectedly welcomed, the pretend play, when there wasn’t any. The sibling play, when there wasn’t any of that either. You get it, and I get you. Much love to you, xo:)

    • and some things they may never do – and that’s ok too. while they may skip B, they may very well master R, which many people never, ever achieve. long as the alphabet soup ultimately spells HAPPY.

  5. “One can’t catch up to someone who is walking on a different road. It simply doesn’t work that way.”
    Thank you for sharing this Jess, once again you have made me cry, I hope you are happy, lol. My daughter is 6, and we have yet to get an actual diagnosis. The specialist we brought her to tested her and said she is just developmentally delayed. But her teacher, and the director of special ed herself both think she is probably PDD.My daughter never really knew how to play either; by herself and especially with other children. But in the last year, she has blossomed in SO many ways. Her speech has taken off, and she pretends so much.My daughter uses distinct voices when pretending; reading about your daughter playing made me smile. I watch my daughter in wonder quite alot ; she is a mystery, a wonderful, beautiful mystery. Heartbreakingly wonderful, but I wouldn’t have her any other way.

  6. I think the disorder part really slapped us when Joey’s first spoken word was “scissors”, but he didn’t say things like “cat.” I’m still trying get the school folks to “get it.” They are all confused that Joey can do fourth and fifth grade math, but not third grade math. :P

  7. I was literally just toying with the very same notion that you wrote about. I too sometimes see these little glimmers of appropriately “ordered” behaviors and play in my 3 year old. And then, I’m brought back to Q instead of C. A different order. A Jonas order. I like that. I really do. The sentence, “One can’t catch up to someone who is walking on a different road. It simply doesn’t work that way,” really rings with me. It leaves me longing that others in my life could internalize the very notion of that in the same simple way that it reads. Thank you for sharing.

  8. “One can’t catch up to someone who is walking on  a different road. It simply doesn’t work that way.” I really liked this…I do hope that our roads are leading to the same place though…love you!

    • perhaps we can find a convergence in the middle. i’m guessing we will forge a new path together that will wind up leading us to somewhere all together more fulfilling.

      (love you too, babe.)

  9. Oy. My comment from the original post rings especially true for me today. Now that Nik’s in school, the differently ordered-ness of things is so jarring. Combined with some other stuff cropping up, it makes for lots of leaky-eye syndrome for this mama. Thanks for the reminder. We’re on a different road.

  10. I still say that you Autism Moms are the true Super Moms. You never cease to amaze me as your children never cease to amaze you.

    Jess’ Mom

  11. Yet another great post! Just got back from the Bahamas and am getting caught up so got to read your last few posts now.
    You know, the concept of a paradigm shift and of being ordered as in a different sort of way like Brooke order is so true.
    Children on the spectrum who are differently ordered…but the key is for everyone to be respectful of how they are plodding their own course…sometimes, so much of the time, it is in uncharted waters.
    There are also children with special medical needs who also have to chart their own course and we are on those waters.
    Since we have started to homeschool out of necessity due to crappy schools in our area, we have come across so many children who have their own order…they beat to their own drums, so to speak.

    In the world of homeschooling, children are not as rigidly grouped…from our experiences so far with homeschooling, the children tend to be much more accepting and kind to those who are doing things in their own order rather than something pre-scripted as developmental norms.
    My sons are in a mixed ability, mixed age co-op that has children on the spectrum as well as children who are developmentally the “norm” for their age,as well as children who are considered to be profoundly gifted…but they all learn so much from each other.
    So many times when you share about Brooke and how she loves to sing and play with her stuffed animals, and how she laughs and loves different colorful characters like the Backyardigans, Yo Gabba Gabba, and Godspell, it makes me wish that you lived closer to us and that she could get the chance to interact with the boys and girls in our co-op, as am pretty sure that she would have a great time and so would Katie.
    I also reflect upon how ill prepared I was as a new teacher to effectively work with children who have their own order…
    even though I had had loads of course work and internships, it was only brief little stints that children who were on the spectrum were in my class…I really wish that there would be a 101 class of sorts that would be mandatory for all soon-to-be-teachers to learn from your and to interact with your family so that they can see how important it is to follow the child, work at helping them to develop their interests and abilities, and to be the child’s best advocate, as you have done so well for Brooke (and for Katie, too, as all children need parents who are in their corner and are as caring as you are towards your children).

    Have a happy week and hope that life on Brooke Blvd. will continue to be a long and interesting, happy, and healthy journey.

    She just sounds like she has made so many advances in her own way and that is awesome!!!

    Colleen:)

    • there’s so much to comment on here that is utterly wonderful. how about i just say thank you and i wish we could come and play too :)

  12. Awesome, awesome, awesome. That is sooo good. I MUST remember that. I was just wondering if my son will ever develop pretend play skills (he will mostly just immitate what we show him). But I need to remember even if he did, he’s not “catching” up. He’s on a different road. I love that.

  13. Let’s start a movement to change the word disorder to difference. At the school within a school we’re working on for Rojo, they are already pushing for the term, “Learning Differences.” NECBM of the difference.

  14. comments from diary’s Facebook page ..

    FM ~ Thank you! After reading this,it changed my whole way of looking at this…I was also stuck on the Delay part and always wondered when Alex would catch up.It’s been a year since Alex was diagnosed and I still have a hard time understanding this disorder…
    ·
    KKB ~ again, wonderful! Thank you for posting this! I have always preferred “delay” versus “disorder”, although I very rarely use either, maybe (read probably) because a part of me is still in denial but also because “disorder” says to me that something is “wrong” with my son. Henry is different on many levels in many ways, but he is not wrong…he is just right for Henry! Whether we prefer “delay” or “disorder” or “insert child’s name-order” (which I LOVE btw!), our children are very RIGHT for us and we should feel NO SHAME in whatever we choose to use! So, for our family we will continue to use the description that Henry has “challenges of the Autism Spectrum”.

    HJ ~ I don’t really care what it is called. As long as you have strategies in place to teach the child to become independent all is well.

    WR ~ I really needed to read this today. It was God’s timing :) Thanks for posting!

    MHP ~ Great post Jess! Had to share with my friends! :)

    KKR ~ Hmm. A new concept to try & wrap my brain around.
    ·
    WD ~Thank you, Jess. I never, ever, ever thought of it this way. Once again, you’re my teacher.

    Diary of a Mom i’m so glad i could offer a new way to look at things. i will always be grateful to that first speech therapist who told me so simply that it wasn’t a delay but a disorder – it’s made a huge difference for me. and hannah, of course .. everything we do is with the ultimate goal of fostering as much independence as possible and above all allowing our children to live a happy and fulfilling life.

    CO ~ I was recently directed to your blog from a very special Special Ed teacher. I am struggling with my son’s recent diagnosis, though I’ve “known” for years. It’s been a very long, isolating road with moments I felt I was going to shatter into a million pieces. Thank you for writing this. I am only at the very beginning of this journey and am not anywhere the level of acceptance you are at, but I strive to get there. Thank you for giving me the smallest glimmer of hope in a situation even my closest friends don’t understand.

    My son is no less of a wonder today than he was the day before the label was given. I only hope now that the world can begin to understand him and see him in the way I do – as a quirky, special, lovable little boy struggling to make it through the day.
    10 hours ago · Like · 1 person ·

    Diary of a Mom ‎@CO ~ – if you haven’t already, I’d urge you to read this post – http://adiaryofamom.wordpress.com/2009/05/01/welcome-to-the-club/ – it says it all. And welcome, I’m glad you found us here. As isolating as it can all feel, I promise that you’ll see that you’re far from alone. – J

    KF ~ Reading this gave me a whole new sense of direction, and a lightbulb above my head just went off. Thank you! You’ve made sense to a word that I’ve struggled with since my son’s diagnosis, 2 years ago. His struggle with pretend play and being around kids in general was never as frustrating to me as it has been to others. I think he just skipped the kid phase and went straight to being an adult (he’s 4). Now it seems that he may have actually done that…and just may turn out to be a kid yet!!! :) You are amazing, thank you!

  15. After reading everything on this site it occurred to me that these words would be very helpful to mom’s who don’t speak English well if they were translated into Spanish, French, German, etc. just wondering if that could be done for them? I pray for all the mom’s with more challenges than I have had. Everyone learns at a different pace and in different directions therefore very difficult to teach in many different ways to try to get through to all the children in a class, even a class of one….. God blessed us all with unique little people, now we have to figure out how to teach and love them to the best of our ability which is difficult with any child. I love that you are sharing your life stories with all of us. Thank you. I would also hope that these words are being printed in several languages in a book, or books to help those who are not on FB. GOD BLESS, I admire the amount of time you take to share and reply along with raising your children. I hope you get some sleep and take care of yourself, too!!!!😃💝😍

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