Sunday, July 14, 2013

this world we live in...

I was eighteen years old when I moved to New York.  I was young.  I was naive.  I was white.  

I bounced around for several months until I settled into what would be my home for twelve months: A predominantly Hispanic neighborhood in Brooklyn - one many considered dangerous, one I felt lucky enough to afford… a little neighborhood called Williamsburg.  

My parents worried. 

I didn't realize it at the time, but I had the neighborhood to look out for me.  That's right.  As the only 'white' girl in the neighborhood, there seemed to be an unspoken rule - my neighbors kept an eye on me… they watched out for me.



I loved my time in Williamsburg… the people I met - the crazy artists living above me, my landlord (yes, my Hispanic landlord, who generously ran an extension to my apartment so I would have electricity), the squatters across the street -  eventually, as time and money permitted I moved one neighborhood over….

Twenty three years later, my daughter moved out of her tenth street dorm room in Manhattan and into a predominantly West Indies neighborhood of Brooklyn.  

I worried.  

And yet, I wonder why.  When I visited her, I experienced the same hospitality, the same welcoming arm I did twenty three years ago.  The neighborhood watches their own… regardless of race - regardless of skin color.  

But does it?

I am white.  My daughter - although half Brazilian, is white - 'whiter' than I am….

Would a 'white' neighborhood embrace a young black or Hispanic woman?  
Would a 'white' neighborhood watch out for a young black or Hispanic women?  



Sadly, I believe the answer is no.  

God forbid, a young black or Hispanic man moved into a 'white' neighborhood.

I don't understand the fear that race and skin color invoke… 

I do understand unease - however, the UNEASE of being the minority - NOT the majority.  As a WHITE person, have *you* ever thought about the black or Hispanic individual… being the ONLY black or Hispanic individual, in a sea of WHITE faces?

I am not perfect.   As I have gotten older, and have lived in less diverse neighborhoods (sadly my current neighborhood has been ranked one of the least diverse neighborhoods in the U.S.A.) I find myself looking to others with suspicious eyes…

However, I hope the day never comes where I grab a gun and talk myself into following someone who comes into my neighborhood because I don't like the look of their walk, the clothes they wear or the color of their skin - because god only knows, that could be me… that could be my daughter.



Thursday, May 2, 2013

the in crowd...

'I'm in with the in crowd
I go where the in crowd goes
I'm in with the in crowd
And I know what the in crowd knows...'

clique:  noun  \'klek, 'klik\
: a narrow exclusive circle or group of persons; especially: one held together by common interests, views, or purposes.
: a small, exclusive group of friends or associates.

I never really thought about 'cliques' when I was growing up.  I guess I was fairly oblivious - I figured people just hung out with who they hung out with - or at least, that's what I thought.


I entered high school when my brother was a senior.  He was a fairly good looking guy (or really, really good looking if you're a fan of Zoolander), loved by many and captain of the football team.  This played in my favor I suppose, because instead of having one big brother at school, I had approximately fifteen, who sheltered me from the social hierarchy of high school.  This also benefited me, because let's face it - I preferred to hang out in a barn, ride horses and play with kittens.



When I think back to social status... I don't really remember having one.  I don't know if that's a good thing or a bad thing.  I remember hanging out on the outskirts of many different groups, but never really fitting in to one particular one.  Yeah, I joined band, performed in plays, lettered in track, spoke a foreign language, tried out for cheerleading, lifted weights, rode horses, passed classes, failed classes, learned how to sew a dress, baked cookies and went to prom.  I also remember thinking a lot of my classmates were assholes and couldn't wait until the day came that I left the small town I grew up in.

At this point, I'm sure you're asking:  'WHY?'

Why is this important, and what does it have to do with Emma?

Well...


Today we are living in the same type of small community I grew up in - one Emma has been a part of since she was a baby.  It makes me wonder... what will the cliques be like - how will they impact her... will they impact her?  With Middle School on the horizon, I nervously bite my fingernails, and wonder... Should we watch 'Mean Girls' in preparation?





Cliques are groups of friends, but not all groups of friends are cliques.


'The thing that makes a group a clique is that they leave some kids out on purpose.  Usually one or two popular kids control who gets to be in the clique and who gets left out.  Kids may act much differently than they did before they were part of the clique.  They may even act differently today from how they were yesterday.. it can be really confusing.' (KidsHealth)

As an adult, one would think the world of cliques would be left behind with middle school, high school - hell, with acne cream.  Yet I find that I'm surrounded by an entirely new set of cliques.  No, as adults we don't call them such anymore - after all, the word 'clique' has such negative connotations.  But, they're there if you look close enough:  our 'circle' or 'clan', our 'community', our 'klatch', our 'network' - heck... even our 'gang'.  Regardless of the synonym one comes up with, when you break it down our adult lives seem to be just as inundated with 'cliques' as our kids lives are.


  

I never realized my unconscious decision not to be a part of a clique as an adult would influence my children's social hierarchy.  Unfortunately for my girls, I am not the 'Captain of the Football Team' paving the way for their social acceptance... rather I'm the somewhat anti-social 'Artsy' girl.  

Again, it's the somewhat Utopian (oblivious) train of thought - I just figured moms hung out with who they hung out with.  


The Mommy Cliques.

Play Group Moms, Park Moms, PTA Moms, Den Moms, Volunteer Moms, Carpool Moms, Vicarious Moms, Sports Moms...



For better or for worse little girls grew up, became moms and new cliques were started - for some, it's as if middle school and high school never ended.  It makes my head spin, this range of cliques... even more so knowing each group has the potential to be lethal to one's psyche.  Not only do Mommy Cliques exclude other moms, the poor examples of socializing and tolerance being modeled can have the 'trickle down' effect and influence how their own children react and interact to other children in school.  

The idea of Emma navigating the waters of middle school cliques weighs heavily on my mind, as I know how difficult it is for me to form new relationships.  At an age when cliques continue to develop and strengthen, I wonder how my daughter will fair.  


The 'Right' Clothes

The 'Right' Haircut

The 'Right' Phone

The 'Right' Attitude

At times I look at her, and I see a confident young lady - one who knows what she likes and what she wants.  Her 'soft pants' and choices of spring attire (six shirts... all of them: pink.  seriously).  How she wants to grow her hair to the middle of her back like her sister's.  At the same time, I watch helplessly as she agonizes over her lack of friendships... she desperately wants them, but doesn't have the ability to foster them.  Her subtle *hints* about a phone... or taking her Ipod to school (everyone else has one or takes theirs to school).  As she has gotten older, she has become more silent - and again, I wonder.

Whether we want it or not, our daughters are going to encounter cliques at school and we are going to to encounter cliques as adults.   Although we cannot control or predict how members of any given clique are going to interact with us, we can control our own interactions.  Here's some advice I've always given my daughters:

1.  Play Nice:  It's the golden rule - treat people the way you want to be treated, so be nice.  That doesn't mean you have to let yourself be walked all over, but at the same time - don't fall into the trap of walking all over others either.
2.  Zip It:  Be kind with your words - nobody likes a gossip... a betrayer... or a double talker.  Although it may be tempting, gossip will only get you into trouble; betraying confidences will mark you as untrustworthy; and, talking behind backs will have your friends walking away quicker than you can blink.
3.  Give and Take:  It's okay to share your time, your talents, your advice... but make sure to listen to and respect your friend's time, talent and advice as well.  Each person wants to feel valued... when it becomes 'all about you', it's no longer a friendship based on equality, rather a hierarchy of personalities. 
4.  Walk Away:  A clique is an extension of yourself and of your friendships.  I've always questioned why one would remain friends with someone who doesn't make them feel good about themselves.  The same thing applies to a clique that becomes too overbearing or too critical... it's time to walk away. 



As for my school days...

In retrospect, I suppose the cliques were always there:  jocks, stoners, nerds, drama/band, cheerleaders, popular.  Some formed to belong, some out of common interests, some for necessity, and many were already categorized for us...  our own little breakfast club.  

'We're all pretty bizarre - some of us are just better at hiding it.' 
 -The Breakfast Club








Title Inspiration:

Dobie Gray:  'The In Crowd'

Wednesday, April 24, 2013

never grow up... (guest post)

never grow up...


'Oh darling, don't you ever grow up,
Don't you ever grow up, just stay this little.
Oh darling, don't you ever grow up,
Don't you ever grow up, it could stay this simple.
No one's ever burned you, nothing's ever left you scarred -
And even though you want to, just try to never grow up.'


The other day I was chatting with a friend, and the subject of 'Who influenced you to go into blogging' came up.  After a brief hesitation, I replied:

'In all honesty, I started out blogging because I couldn't find what I was looking for.  Information on pre-adolescent/adolescent girls and autism.'

Let's face it - I'm an artist... I'm not a writer... I agonize over everything I write, often wondering if I am getting my point across.  'Good design' is equally as important to me as 'good content'.  But 'this' (adolescence and autism) was something I felt passionate about...  something that was clawing at my very soul.

You see, I had just 'come off' adolescence with my oldest daughter, Isabella  - and let me tell you... it wasn't pretty.  I was terrified of what adolescence was going to bring for Emma.  I wanted to try and find a group of mamas (and papas) to connect with - to share things with.  And, let's face it - there are no two ways around it:  Adolescent girls can be mean!  The problem was - nobody was talking about pre-teen girls, adolescence and autism....

Now, more and more girls are speaking up... rather their parents are... you are starting to hear some of their voices... however, I still don't feel the voice of the pre-teen girl is well represented yet.

No, I'm not a pre-teen girl... I'm not autistic...  I don't presume to know what my daughter is thinking, not being on the spectrum and all... I can only do what I do best... be her parent.  But I do know girls... and, I do know something about adolescent girls (having just raised one daughter through it AND, having taught a whole boat load of others).  Quite frankly, adolescence scares me - even more so today then it did a few short years ago.

If you haven't raised a girl through adolescence before, I don't think moms and dads realize how truly difficult - and at times - cruel this stage can be.  

You have a wonderful girl.  A super, kind and loving girl... and within a day, hour, minute - she can be completely demolished by her peers or so-called friends.  NT, ASD - it really doesn't matter.  With the addition of social media... it just brings the ball game to a whole new playing level.  Unfortunately, I watched as it evolved - almost in the blink of an eye.

Flashback 10 years ago.  

Isabella would have been in middle school.  Computers weren't as abundant as they were now.  (Smart Phones?  Facebook?  Twitter?)  More or less each household had a computer, but it was 'the family computer'.  As parents, my husband and I monitored Isabella's activity constantly, much to her chagrin.  There was absolutely no 'surfing the net' without us being in the same room.  I remember her being 'furious' that we wouldn't allow her to have a computer in her room.  'MySpace' was the fad, and she like many of her friends, had an account (my husband and I called it SpySpace, as we knew the password, and would look to make sure there were no 'MySpace' shenanigans happening).  

So, one would think - one. would. THINK. - that even with constant monitoring, as parents, we would be able to keep the shit out... the bad things... the bullying.  But you can't.  Because it happens.  In the blink of an eye.  

Hidden behind the safety of a computer screen, never having to hear a voice, or see a face, a child can type something so hideous and so ugly... and press send... close a screen and go to bed.  Never knowing the consequence on the other end.  Why do I know this?  Because I've seen firsthand how a child... how a girl can be devastated by a message sent callously.  By a cruel remark meant only to hurt.  That was ten years ago.  Ten years ago.  One computer.  Monitoring.

Now there is WiFi.  Children have laptops... iPads... smartphones... unsupervised access to the internet.   Students are indignant if you ask them to put a phone away in school... they update their status, they tweet, they snapchat... how is one to contain such a plethora of social media access?  If something happens, it's sent to everyone's phone within seconds... heck - they have a better 'phone chain' than any parent group will ever have. 

At the beginning of the current school year, there was a girl in a neighboring city who committed suicide - she was bullied via social media.  She was a beautiful girl... she had her entire life ahead of her.   Yet, her classmates somehow deemed her unacceptable... they sent her messages via Facebook and Twitter demeaning her... so much so, that took her own life.  

Technology is great - as adolescents, children aren't always.  Decision making and cognitive skills are at the height of growth in their developing young brains.  Adolescents are developing personal identities... they're trying to figure out where they fit within their peer group.  Mistakes are made, awkwardness ensues.  Unfortunately, in this digital age every humiliation is documented and circulated for the 'enjoyment' of others.  There seems to be no sense of accountability anymore.  No personal interaction.  Half the things I have seen written, I would NEVER have the nerve to say to someones face. 

So now, as I have two girls 'up to bat' in the game of adolescence,  I can't imagine how things are going to be for Emma.

Each day, I ask her how her day was...  I ask her who she played with at recess and I want to cry, because she tells me the same thing everyday:  There were children playing everywhere and none of them wanted to play with her.  With the exception of her sister, she spends her day virtually friendless.  

Tell me though - how soon will it be before they aren't talking to her, and they start picking on her?

If only we could tuck them away and protect them forever...



isabella....


emma...



fran...


'Your little hand's wrapped around my finger, 
And it's so quiet in the world tonight.
Your little eyelids flutter cause you're dreaming, 
So I tuck you in, turn on your favorite night light.
To you everything's funny, you got nothing to regret.
I'd give all I have, honey - 
If you could stay like that.'




Title Inspiration:
Taylor Swift:  Never Grow Up






Tuesday, April 9, 2013

return to sender...


'Return to sender...
Return to sender, address unknown.
No such person, no such zone.'


It's the only thing that was going through my head last week...

Not:  'Yeah - it's spring break!'

Not: 'Woot, woot - eight days with the girls!'

'Return to sender…

Return to sender, address unknown.
No such person, no such zone.'

Why, WHY, your probably asking yourself am I singing an Elvis song. 

Last week we received the one thing we didn't want at this house.  The monthly bill.  

...The *first* monthly bill...

And you know, if I could - I would just. send. it. back!

'Return to sender… address unknown.'


So there you have it.  The lousy euphemism…. the elephant in the room.
Why am I writing about it, this intimate crossroads of childhood to adulthood?
Because, I think it's the one thing we are all somewhat terrified about.  

I know I was.  

How will our daughter's handle it? (how will *we* handle it?)  Believe it or not, it wasn't as terrifying as I anticipated, because we were prepared… we had talked about it.  She knew what to expect.  I think *I* still needed to be prepared, but she was cool… as a matter of fact, she was better then cool. She was amazing.  Without going into too much detail about our experience, let me share some practical advice to help smooth the way for you and your daughter. 


~ The Talk:  Start talking-to your daughter about what to expect.  No, eight is *not* too young to start bringing up the subject.  Get a book -a friendly book.  Read it with her.  Look through it with her.  Leave it with her - she will look through it on her own.  However you feel comfortable… just make sure she has access to a book about her body.  There are a LOT of books out there.  Good books.  Bad books.  I suggest before you grab book and leave it with her, look at it.  Don't just flip through the pages, really look at it - read it - make sure it is appropriate for your daughter.  The book I had gotten for my oldest daughter wasn't necessarily the best book for Emma… the pictures (although drawn) I felt were just too graphic.  After looking at many more books, I found 'Just For Girls - A Book About Growing Up'.  This is a sweet book about growing up, with cute illustrations describing what will happen in an easy to understand way.  


Just for Girls - a book about growing up.

~  The Name Game:  Don't use silly phrases, i.e. 'your monthly bill'.  Call it what it is.  Menstruation.  Period.  Whatever your comfortable with - although I do have to admit, Fran and Emma are calling it 'The P.'  Fine.  When I was writing this, out of curiosity I decided to google slang for menstruation, and I have to tell you - it seems as if there is a never ending supply of slang terms for a woman's monthly functions.  Yeah, let's keep that out of our daughter's vocabulary.  The less embarrassed you are to talk about the natural functions of your daughters body (your body) the less embarrassed she will be about them.  Talk openly to her.  Encourage her to ask questions, and don't shy away from the answers.  A note to the wise - it is important to let her know this is a *private* function, one that is not to be shared with the entire world (yes, I do see the irony here).  Just make sure to let her know it is not necessary to inform the store clerk about her period... or visiting guests... the postman... the next caller... well - I think you get the point.  Some things are meant to be - private.  

~  The Products:  Get ahead of the game... go on out and grab some products now - it's okay.  Have them on hand.  I didn't have any.  I thought I *still* had time!  When Emma approached me, I was at a loss.  Even though Isabella had been through this twelve short years earlier, it's as if that never happened.  Suddenly I was transported back to the 1970's, and all I could think of was a belt and 1" thick pads!  Thankfully for Emma, a few quick emails to a friend set me straight.  

Kotex 'U' for Tweens

Kotex has a new product line branded towards tweens called 'U'.  They are smaller and more comfortable, and made to fit a younger body - the best thing about them?  They come in awesome, brightly wrapped packages, making it fun to choose the color of the hour - seriously... it was fun to decide which color to choose!  On a side note - the Kotex 'U' line also has tampons if your daughter is ready for those.

Looking for for the 'all in one' kit?  Dot Girl First Period Kit is everything a girl needs for her first period.  It's sweet, and comes with a little booklet, a few pads, carrying case - well everything a girl needs for her first period.  Practicality wise - I don't think my girl... or any girl will use the carrying case, because who want to announce to the world that you have your period by carrying your pads around in a case that says 'Dot Girls'.  And, the pads are in boring old white wrappers.  However, it is not without its merits... it's a fun little kit for first timers to go through.  My bet is with the Kotex line though - go shopping for a nice little bag to put her pads in.  (Emma has a furry leopard one.)
 
~  The Mess:  There's no two ways around it, if your daughter is using pads - even tampons - her period is going to be messy.  You will more than likely have to sit with her the first couple of days to assist her, so she knows where to place her pads (often times once will not be enough).  Stress Cleanliness!  Explain to her that there can be an odor associated with her period, and it is paramount to keep herself clean.  I suggest investing in flushable wipes.  If you are still working on hygiene issues, remind her to *always* wash her hands.  If these things are explained to her clearly, she will be on board.  To help your daughter when you are not there, you may need to go back to a temporary visual chart that she can refer to - this is all dependent on her age and abilities.  

Dot Girls First Period Kit

~  The Schedule:  Help her learn how to keep a schedule.  Not only is she going to need to learn how to track when she first started her period and when it ended, she is going to  need to know when to change her pad.  Knowing when to change her pad is something that doesn't come naturally.  If she has an iPod or phone, set an alarm to go off every two hours.  If she has a watch, set that.  Make sure you are also keeping track of the time, so you can remind her/take her to the bathroom - she is going to need help with this!  When she goes to school, make sure an adult at school knows what is going on.  If she has an aide, inform the aide.  If she feels more comfortable, request that she uses the restroom in the nurses office (you can even request that she keep her supplies there).  Again, in the beginning, she may need an adult at school to give her a reminder.  This of course depends on the age and ability of your daughter… this may or may not be necessary - just know that these are options available.

~  A Pair and A Spare:  In the beginning - heck, at anytime, it's always good to have a spare pair of underwear and jeans tucked away in your daughter's locker just in case.  There isn't anything more horrifying than to have an 'accident' at school and not be able to anything about it.  This doesn't just happen to girls on the spectrum - this can happen to anyone, and is just practical advice.

All the practical stuff aside - your daughter will get through her period... better than you think.  As capable as I think Emma is, I didn't give her enough credit.  That's my bad.  I kept thinking to myself:  'How is she going to do this?'  Maybe I should have been asking myself, 'How am *I* going to do this?'  Emma is at the cross roads of childhood and adulthood....   just last week I watched in wonder as Em nonchalantly told her younger sister:  'Fran, it's not a big deal - I'm growing up.', and then ran upstairs to play stuffed animals with her for two hours!




I have not read this book, but looks good:



The Period Book

some helpful links from kotex:



*Please note, prior to writing this post I spoke with Emma - I wanted to make sure I would not be breaching her privacy in any way.  The majority of the information is provided from my viewpoint and does not all pertain to her.  Some of these strategies have been culled from current and previous experiences, as well as conversations with our special ed advisor.  I have not been paid, nor have I received any of the products referred to in this post.  These are all products that we have either have, used or researched.



Title Inspiration:  
Elvis Presley:  Return To Sender

Tuesday, February 12, 2013

blue ba da dee...

'I have a blue house, with a blue window.
Blue is the color of all that I wear.
Blue are the streets and all the trees too.'


On the evening of April 2nd, 2010 I turned on my porch light - it lit up a beautiful blue.  As I looked up and down the street, I saw how it stood out - how beautifully it shined amongst all the white lights that dotted my street.  That blue light... that singular, beautiful blue light encompassed all that I felt for my daughter.  My pride in who she is.



My daughter is autistic.  

She was diagnosed with PDD-NOS when she was four years old.  As with most parents, my husband and I realized some of the same connections weren't being made... connections that her younger sister was already making.  After repeated trips to the pediatrician, psychologist and neurologist, Emma's diagnosis was confirmed.  

Autism Spectrum Disorder (ASD).

From the time my husband and I received her diagnosis, we have been her biggest advocates - we embrace and cherish her for who she is.  Everyday I fight to ensure she receives the best accommodations, to assist her in being the best she can be, to educate others in understanding and accepting her for who she is.

'Lighting It Up Blue' during the month of April is one of the ways I celebrate my daughter and educate others in my community about autism.  That first year, while my porch light shined, I felt as if our family belonged to some 'secret club'.  As I drove throughout my neighborhood, my heart would beat a bit quicker each time I would catch a glimpse of another 'member'.

The following year, I invited my neighbors to 'Light It Up Blue' (46 houses), asking them to join me in celebration of my daughter - thus creating 'The Blue-evard'!  Imagine seeing 46 homes bathed in blue on the night of April 2nd, 2011.


The 'Blue-evard'

Last year, a former neighbor who happened to move 4 streets over, asked if he could get involved. The response from my neighbors was overwhelming!  With a little planning, and a LOT of footwork, four connecting streets participated in LIUB - over 200 consecutive homes 'Lighting It Up Blue' for Autism!  I had also contacted our Mayor to 'Light Up' our City Hall, and worked with our schools to 'Light It Up Blue' as well. The impact our little community of blue lights made when one drove past was incredible!  Parents from neighboring cities drove their children to see our lights... telling them:  'This is for you!'



The Original 'Blue-evard'

No. 2

No. 3

No. 4

City Hall

I am truly humbled by community.  During the month of April, neighbors from other streets contacted me - wanting to know how they could participate the following year.  This year, I am hoping to have seven connecting streets, with over 350 consecutive houses 'Lighting It Up Blue'.

People have asked in the past, how did so many in my neighborhood participate in 'Light It Up Blue'... did I send out emails... ask through facebook?  It's been old fashioned footwork, knocking on doors and talking to my neighbors.  Talking about Emma, about who she is, her interests, what she likes to do... her hopes for the future.  


On the 'Blue-evard'

I also talk about autism.  

Lately I've been reading about Autism Awareness vs. Autism Acceptance.  There are still so many outside the autism community who have no idea what autism is.  It's important to inform, while not losing identity.  This is the Autism I want my community to know - My daughter is not a diagnosis, she is an individual.  With awareness comes understanding, with understanding comes acceptance.  It all starts with a conversation, one I invite you to have with your friends, your neighbors.  For me, Autism Awareness/Autism Acceptance doesn't start in April - it starts now.  They say 'It takes a village' -I'm creating my village - Emma's village.  Street by street... door by door... family by family.

This is how I celebrate Emma... this is how I 'Light It Up Blue'.


Our Village


'I'm blue, da ba de, da de die

Da ba de, da ba die
Da ba de, da ba die
Da ba de, da ba die
Da ba de, da ba die
Da ba de, da ba die
Da ba de, da ba die

I have a blue house...'

Title Inspiration:
Eiffel 65:  Blue Da Ba Dee

Friday, January 18, 2013

the rainbow connection...

'Rainbows are visions,
but only illusions -
rainbows have nothing to hide...'

Rainbows.

What are they exactly?  I mean, we can all look up the meaning of the word 'rainbow' in the dictionary, and come up with the following:

Rainbow:  noun
     1.  a bow or arc of prismatic colors appearing in the heavens opposite the sun and caused by the refraction and reflection of the sun's rays in drops of rain.
     2.  any brightly multicolored arrangement or display.

When I was in art school, we talked a lot about color and color theory... what makes up color (light) - how to create color.  Additive, subtractive... there's more to color theory than one thinks!  At this point, you may be asking yourself - what does this have to do with anything?  Well, whenever I think of rainbows I think of lovely, magical things:  unicorns, fields of daisies, and cures for all my blues.


baby unicorn fixing my day with rainbows


The word spectrum conjures up a different image for me:  Pink Floyd's 'Dark Side of the Moon'.


album cover:  pink floyd, 'dark side of the moon'

What does this all boil down to?

Yesterday Emma and I had 'The Talk'. 

No, not that talk... the birds and the bees talk - (spare me that one a few more months, please). But 'The Talk'.  The Autism Talk.  

Emma's eleven years old.  Up until yesterday she has never really known she is autistic.  It's not that we've hidden her diagnosis from her - we've always talked about autism.  We've just never made a big deal out of it.  It is what it is.

Emma is who she is.

I suppose I always thought the day would come when Emma would start asking questions... when she would want to know why.  Why she didn't have as many playmates as her sister, or why some things were challenging for her.  However, the closer I look, these are the questions I was expecting Emma to ask.  You see, Emma has always seen herself as the 'big sister'.  She has never seen herself as being different or having 'deficits'.  She has always seen herself as Fran's role model, just as Isabella has been hers.

I digress.

Emma is starting a medication monitoring program next week to help with her ADD.  It's important to her father and I that she understand why she will be taking medicine.  So, yesterday after school we sat down, (Emma, Fran and myself) and talked about ADD.  Attention Deficit Disorder.  I told them it's basically what keeps one from completing a task, homework or even a thought (in Emma's case, we fondly call it the 'Bob Effect' - Bob being our cat - but that's a story for a different time). 

I explain to Emma she has ADD, and let Fran know the reason we call her 'The Night Crawler' when we put her to bed is because she has ADHD - Attention Deficit-Hyperactivity Disorder.  As Emma soaks up this information, Fran of course, starts popping in her chair like a bag of popcorn!

'Calm down Night Crawler - it's no big deal.'

Both of them giggle... all is good - they're cool.  No problem.

Next on the list is Dyslexia.  Since the time we learned of it, Fran has known she is Dyslexic.  But, I want them to understand... how ADD and ADHD is a part of who they are, like Dyslexia is a part of who Fran is.  It doesn't make them different, it just creates challenges when it comes to certain aspects of learning.

With the groundwork set, it's time to about Autism.

Round 1 (ask a question):

'Baby,' I ask her - 'you've heard your dad and I talk about Autism before.... do you know what Autism is?'  I look at Emma expectantly, as if she's going to give me the low-down on autism.

She gives me the look.  You know, the 'What are you talking about, lady?' look.

Hmmm.  Okay - I'm not good at this... I never have been.  When it came time to give Isabella 'The Talk' (yes, the birds and the bees talk), my husband and I did it while we had her trapped in the car for a three hour drive.  Side note - BEST TIME EVER to give your kid 'The Talk'!
A.)  They can't go anywhere
B.)  You don't have to look them in the eye
C.)  Everyone's trapped!

Round 2 (let's be logical):

 'What is Autism?' I ask.  Simplifying things, I continue:  'Well, Emma - like ADD, ADHD and Dyslexia, Autism is a disorder - a disorder where you processes things differently than others.  Just like Fran is Dyslexic and it's a part of who she is, you're Autistic and it's a part of who you are.'  This is met with some growing anxiety and blinking of the eyes.

...You process things differently...'  Think mama!  We are a family of visual learners... why not give a visual example?


Round 3 (rainbows):

'Babe, - do you like rainbows?'

Her eyes light up... are you kidding me?  She LOVES rainbows!  (I mean, like her mother she thinks rainbows are magical and solve all your problems... see above)  When Emma thinks 'rainbows', she goes all out and thinks of all her favorite things:  Ponies AND rainbows - what could be better?


rainbow dash

AND, with her new found love of 'Adventuretime' - princesses get added into the mix as well.


lady rainicorn

The point is - rainbows are cool.  Rainbow Dash and Lady Rainicorn are pretty darn awesome!

So, I start again, this time explaining:  


'Do you know another word to describe a 'rainbow' is 'spectrum'?  Well, Autism is part of a spectrum (insert rainbow)... a spectrum where people on it have strengths and challenges.  Strengths may be in writing, mathematics, memorization or even art... or, challenges with communication, processing information, socializing.  You my dear have strengths, but you also have some challenges - you process things differently, so this gives you a place on the spectrum - or on the rainbow.'


After telling her this, she want to know where...  Where is she on the rainbow?      

Of course she does.

So, we create a make believe rainbow and find her place on the spectrum.  As we do so, we talk about her strengths... her challenges.  We talk about her love of animals - horses especially... her unequivalent empathy to all living creatures...  her artistic abilities... her beautiful spirit and soul.  We move on to some of her challenges:  her struggles with communication... her self-proclaimed 'shyness' with people... her difficulty with processing information.

Later that evening as we all sat at the dinner table, my husband and I are discussing the upcoming medication trial.  Fran starts hopping and popping - basically vibrating out of her chair...

'Guess what, guess what...' she exclaims 'i'm ADDDDDD hyperrrr!' -Oh yeah, 'The Night Crawler' has made an early appearance tonight.  *sigh*

Emma pipes up with: 'I'm a RAINBOW!'


'Who said that ev'ry wish
would be heard and answered
when wished on the morning star?
Somebody thought of that, 
and someone believed it.
Look what it's done so far.
What's so amazing
that keeps us star-gazing?
And what do we think we might see?
Someday we'll find it -
the rainbow connection.
The lovers, the dreamers and me.

All of us under it's spell, 
we know that it's probably magic.


Title Inspiration:
Kermit the Frog:  'Rainbow Connection'

Friday, January 11, 2013

mr(s). cellophane...


"A human being's made of more than air

With all that bulk, you're bound to see him there
Unless that human bein' next to you
Is unimpressive, undistinguished

You know who..."

Have you ever had those days, the ones that regardless what you've said... how you've said it... it seems as if it no one hears what you've said?  Or worse yet - your 'audience' hears it, but glances over it as if what you said isn't consequential at all.

C'est la vie - Such is life.

Or should it be?



The other day I attended Emma's IEP review.  They tend to be rather lengthy, with all sides interjecting and adding to the conversation.  This one even more so, as we needed to discuss the results of her evaluations and her upcoming medication trial.  However, as we came to the part about socialization in Emma's IEP, soon I was a voice standing on my own.  I knew I hadn't broad-sided the team with my requests or inquiries, as my IEP input form clearly stated:

"There have been so many strides taken towards academic accommodations for Emma - for this I am truly appreciative.  Year after year however, I feel like a broken record.  Socially - yes, socially - Emma is missing a very large component.  Only part of the child is being educated.  She is completely lacking in any type of social contact with her peers.  Someone once told me:  'Being friendly and being a friend are two completely different things.'  Emma needs a friend!

Imagine going to an event where you know everyone, yet no one talks to you with the exception of the polite hello or chit chat.  This is everyday for her.  

Peer mentoring is such a valid form of education - for both a special needs and a NT child.  It doesn't hamper either's education, rather enriches it.  I just feel that there are situations where peer mentoring would be beneficial, and would allow other students to get to know her better... to foster some relationships.  She really just wants to be a little girl."

Yes, after a few shaky starts, discussions began - but I don't know if anyone really 'heard' what I had requested.  No, you cannot 'force' children to create friendships, but you can create opportunities for children to work together.  Instead of always pairing the children with a disability together (is it easier?) - shuffle the deck... pair them with their 'typical' friends... allow them opportunity to form new friendships.  One isn't exercising 'inclusion', if at every turn one is drawing invisible lines of 'exclusion'.

It's frustrating.

As a 'neuro-typical' adult, I'm supposed to be able to handle situations where I'm misunderstood or not heard at all.  Let's just say, it's hard... I don't.  Over the years, I have developed a much thicker skin, and have tried to adopt the theory of the duck:  Let it roll off.  But, it's hard - it's really hard when you want to contribute to a group... when you want to have your voice heard, and it falls on deaf ears.  Why?  How quickly one can be transported back to the cliches and insecurities of middle school and high school.

So, I look at my girl, and I think - if I have such a difficult time with this... how must it be for her?  So often she doesn't speak up.  So often she doesn't share her feelings.  How can I help her be the duck when sometimes I find it difficult myself.




"Cellophane

Mister Cellophane
Shoulda been my name
Mister Cellophane
'Cause you can look right through me
Walk right by me
And never know I'm there..."



Title Inspiration:
Chicago:  Mr. Cellophane