My Year in Fragments

It's the last Friday of the year.  And it's hard to believe that I've managed to keep this blog going this long.  Especially because AutismWonderland started out as a class assignment.  By this time last year, I recieved my grade for the course.  And there was no need to write another blog post ever again.  But I kept going.  


It's been a great year.  So I just wanted to share some of my favorite posts of the year in fragments.  So if you're new here or if you've been reading for a while and haven't had a chance to read everything - I would love for you to check out some of the posts below.  Maybe share it with a friend.  And as always - comments are always nice too :)


January A Very Merry Unbirthday: The Boy is great one on one.  A room full of kids - whether he likes them or not, is extremely difficult for him.  His birthday should be enjoyable - not stressful and definitely not an ABA session in socialization.

We never did take him to where I thought about going.  Maybe this year...

February Dear Dr. Oz:  An open letter to Dr. Oz in response to his show on Autism.  He got it all wrong.  Not only was it incredibly disappointing but it also made me angry.  My son has not been “robbed” of an emotional foundation...My son is not “broken” so let’s not try to “fix” him.

March The R-Word: If you are looking for a New Year resolution, look no furthur.  Take the PLEDGE.  "Retard" is one word we can do without in 2012.

I can't tell you how often I hear the word - retard.  By friends, family and even - surprisingly - many therapists and special education teachers.  Thrown out casually and often without any real offense.  It's become part of every day vocabulary, a slang term.  I never say anything when I hear the word.  I don't correct people, even though it offends me.  Consider this a warning.  I'm tired of hearing it.

April We'll Pass on The Cure:  Diseases need to be cured.  Autism needs to be understood.  We need to understand that life doesn't always run on an exact timeline. Not every achievement or milestone needs to happen for every person at the same time.  We need to understand that different is not always a bad thing.  Different doesn't need to be feared or cured. 

May My Mother as Abuela:  My mother and The Boy have a very special relationship.  As a grandmother, my mother treats The Boy completely different than how she treated us.
I often come home and find my mother reading to my son, in a quiet patient voice; a voice that I don’t recall hearing as a child.  There is a small part of me that feels jealous, almost slighted because my mother never read to me. 

June Questions are Welcome. Staring is Not: The Boy is at the age where autism is becoming more and more obvious.  It's not like when he was 2 or 3 or even 4 when it was easily disguised.  He's 5 1/2 and he's different and there's no calling it anything else.  He is my son and he goes where we go.  We shouldn't have to hide him from society, because his behaviors make others uncomfortable.

I wrote this post for parents of  "typical" kids after I attended a BBQ. Instead of staring or looking away - please try to include us.  I have a great one if you are unsure of what to say.

July Three Words I Don't Often Hear: The Boy doesn't say "I love you" often, but when he does - I savor that moment.  So many parents take those three words for granted.  Some parents, wrapped up in their own chaotic day to day, ignore these declarations of love.  Me? I have to cherish each and every time because I'll never know when, where or why I'll hear them next.

August Just one of those days: One of my many posts on lack of sleep bursting into tears for no reason other than sheer exhaustion.  And in spite of my crappy day - waking up late, missing trains and getting caught in a torrential downpour with no umbrella or boots - I still manage to find joy in the little things.  

September Building a Dream School:  There is not a single school in The Bronx dedicated for children like The Boy.  It has become my dream to create a non-profit organization and build one.  That's the 2012 goal.   

October Walking Up The Down Escalator:  It's tough to see our kids struggling to achieve the things that come so naturally to other children.  And there are moments where I wonder - will he ever get it?  And then I have to remind myself that all kids go at a different pace.

November Making Peace with Autism: The moment a parent hears: Your child has autism.  Your world will change.  And you can either let the diagnosis destroy you or you can make peace with it.  Making peace with autism doesn't come easily, it's a process.  But once you make peace with autism and accept your child as autistic everything else kind of just falls into place.   


December El Que Diran: The El Que Diran is the unspoken belief in Latin-American culture that every person’s actions in society are subject to the scrutiny and criticism of every person they know.  When you have a child with an invisable disability the critcism goes to a whole other level.  And friends, family and strangers will all have a say about your child and your parenting technique (or lack thereof).  In the years, since The Boy's diagnosis, I've heard so much. I've learned to ignore most of it.


I'm linking up in 2 amazing places today.  Go on over and say Hey :)  

Play along! Don't know how?  

Check out Mrs. 4444

at Half Past Kissin Time 

for more Friday Fragments.

This year in blog posts…choose a favorite post from each month of 2011 and share. 

One Doesn't Have To Be The Loneliest Number

(a recent conversation with my parents)

Dad: "When are you going to give Norrin a brother or sister?  You're not getting any younger."  

Me: "It's not that easy..."

Mom: "Ay please, at her age - she might as well forget it." 

Before The Boy was born, I had never given thought to having children. 

Seconds after The Boy was born, I was immediately asked, "So...when are you having another one?" 

And on the day The Boy's was diagnosed, the doctor warned me that I was more likely to have another child with autism.  But friends, family and therapists insisted that The Boy really needed a sibling more than ever.  

If it were up to The Husband, we'd have an apartment full of babies.  The Husband is 1 of 7.  And all of his siblings have 3 or more kids.  And some of those kids have kids.  (Clearly, I am the weakest link in the fertility department.) 

And after my miscarriage, it's been difficult.  And with every month that passes, the more accepting I become.  I will probably never have another child. 

Most days, I try not to think about it.  But it's pretty tough when I read other special needs parent blogs and the focus is sibling relationships. 

I always wonder - what kind of big brother would The Boy be?  How would a 2nd child change the dynamic of our family?  Is The Boy missing out on something?  Am I? 

And these 'what if' moments make me reflect on my own sibling relationships.  I'm 1 of 3 and we're not close. And as for The Husband's relationship with his siblings...let's just say that the holidays came and went without any phone calls. 

Sibling relationships can go either way - I have friends who consider their siblings their very best friend.  But I also know siblings who have gone years without speaking.

When you have more than one kid, you just never know what their relationship will be like.  You can try your best to make them close but it's a gamble, like anything else.  

This is what I tell myself whenever I feel guilty about The Boy being an only child.

While The Husband and I may not have the ideal sibling relationships, we are lucky to have formed friendships to fulfill the sibling role.    

I would love nothing more than to have another baby, to give The Boy the opportunity to develop a relationship with a sibling.  But if that doesn't happen, that's okay too. 

The Boy will be fine as an only child.  He doesn't need to have a brother or sister to be close to someone.  And The Boy will not have to be alone if he does not want to be. 

Just as the The Husband and I learned to form friendships and adopt them as our "brothers" and "sisters," The Boy can do the same.  We can teach The Boy pick a good friend and to be a good friend.  Even if it's just to one other person.  That's all The Boy needs. 

    

Feliz Navidad! Merry Christmas! Happy Holidays!

 Salud! 

The mad dash this morning!  

It's  great to see The Boy's excitement of Christmas morning... 

An attempt to take a family pic...oh well, next time!

So long as I get my Christmas kiss - I'm good!  

What's a Sunday like in your City?   
Unknown Mami wants to know!  
Go on over to Sundays In My City. 

Must Have Coffee [Friday Fragments]

I know it's Saturday morning.  Very early Saturday morning - 5:54 am, to be exact.  I haven't even had a sip of coffee.  BUT, I have put a 10 lb pernil in the oven and started a batch of cocoquito.  


Coquito is a Puerto Rican version of egg nog - only much much better.  It's creamy and  coconutty and can have quite a kick.  But it's a pain to make and I'm not even chopping a real coconut.  In the end, it's worth it. 


I suppose I should have taken a picture of these but I can only do so much before my first cup of coffee.


And don't you know - I finally just went to pour myself a cup of coffee and realized I'm out of cream...

* 

On mornings when I wake up at 6 am and The Boy's room looks like this (because The Boy was up and playing at 5)

12/2011

I wonder why I bought more Legos, more books, more trains for Christmas.  

Especially when The Boy's birthday is next month.

And even though it's the eve before the Christmas Eve - it still doesn't really feel like Christmas. 

The tree is up, The Boy's presents are waiting to be wrapped.  (Yes, still waiting.  I know.)

I have my pernil in the fridge oven seasoned with garlic and salt, oil and vinegar, a few pinches of oregano and pepper. 

I have opened the cans of evaporated milk, condensed milk, coconut milk and creme of coconut stacked on my counter.  It's already waiting to be blended together with Bacardi & sprinkled with cinnamon.

And I even saw The Boy perform at his very first Christmas recital.  He sang!  The Boy actually sang.  With three other classes!  In front of other grades and parents and teachers in an auditorium!  He clapped when he was supposed and did everything the other kids were doing.

I hate when I underestimate him.  I was so nervous it would be a repeat of this day.  And it wasn't!  The Boy did good.  (He only cried when I left...and that made me feel guilty and sort of crappy.)

And for 5 whole minutes, I was like every other mom in the room.  Not a special needs mom, just a mom - watching their child perform.

At the end, when all crazy proud parents swarmed in the children to take pictures, The Boy actually smiled and wasn't phased in the least. 

Holiday 12/2011

But still...it still doesn't feel like Christmas.     

Maybe it's because it's been in the 50s for the last few days.  And I'm still stomping the streets in ballet flats and a light jacket.  I think I've worn a hat once - maybe twice - so far.

It's colder this morning - Christmas biting cold.  And I'm not thrilled about going outside to buy cream but I just can't go through the motions of this crazy day without it.  

Play along! Don't know how?  

Check out Mrs. 4444

at Half Past Kissin Time 

for more Friday Fragments.

Gentle Christmas - a "Just a LiL Blog" Post

photo courtesy of www.BloggingLily.blogspot.com

"Gentle Christmas" is part of the Through the Looking Glass series (guest post)

I discovered Jim's blog,  "Just a Lil Blog," a few months ago and from the first post I read - I was hooked.  Jim has made me laugh and cry, his voice is honest and poignant. 


His blog header says it all: The true life adventures of a little girl with autism, and her struggles raising her two parents with only a big sister to help her.  

~~~~

Lily sees “Rockin’ Santa” on the hearth the morning after we decorated the Family Room.  She wanders over to pick him up, saying, “Santa Claus”, clearly. 

We smile and I ask her, “Do you want me to turn him on?”

Maybe we’ve learned our lesson from all of Lily’s adventures with other animatronic decorations.  She’ll be fascinated with him, no, obsessed with him, for a day or two before losing interest.  I thumb the switch on and adjust the potentiometer dial to a higher volume.  “Rockin’ Around the Christmas Tree,” starts to play.  It’s been twelve months since I’ve heard it.  It doesn’t make me cringe yet.  It will.  Santa begins to sway to the music, cuttin’ a rug to Brenda Lee’s musical stylings.  Lily gets excited and carries Santa too far from the power strip.  The chord pulls taut then the lead pops out from the back of Santa’s boot where it trails across the carpet to the plug-in and he goes silent, his Achilles heel pierced by an unseen arrow, or unpierced I suppose.  Lily stumbles a bit at the unexpected release and looks around in slight confusion.

“You have to stand still with Santa.  Be gentle,” we admonish her, carrying Santa (and her) back to the hearth and plugging him back in.  The music starts over.  This time I do cringe a little.  This process repeats itself a few times before the lesson sinks in and Lily contents herself with standing or sitting next to the power strip with Santa, or as far as he’ll reach without pulling from the socket, a trip wire of Christmas spirit waiting to snare the unwary (her big sister, Emma, most likely).

photo courtesy of www.BloggingLily.blogspot.com

The Christmas tree is up and decorated.  Burgundy velvet ribbons weave in and out of pine boughs.  Limbs drip with sparkling glass and shining brass ornaments, reflecting and refracting the glint from hundreds of white lights.  Lily investigates it periodically.  Once she leans in very close.  The ‘needles’ (it’s an artificial tree) are beaded with ‘ice’.  She opens her mouth widely and says, “I bite tree”.  I watch her from my chair, wondering where this is headed, but she leaves after a few minutes, the tree unbitten.  This threat seems to have been more to see whether I’d let her bite the tree than for any gratification tree biting might have offered her.

Later she stands next to the tree watching me intently, taking blind swipes at it without taking her eyes from mine, an attention getting device of some kind, though my attention is fixed firmly on her.

“Be gentle with the tree, Lily,” I tell her, for the tenth time.  She hits it this time.  The bows sway slightly and a faint jingle of ornaments shifting and swaying can be heard.

“If you hit the tree again, Lily, you’re going to have to sit in timeout.”  She hits the tree again.  She sits in timeout. 

She leaves the tree alone then, at least for a while.

An advent calendar sits in the hallway.  It’s a big one, not one of the paper cut-out kinds with the flaps.  It is shaped like a house with 24 doors.  Behind each numbered door is candy, or a tiny ornament.  When the doors open “Santa Claus is coming to Town” chimes, and a shuttered window like a cuckoo clock door opens revealing a child in winter clothes opening a Christmas stocking full of presents.  Below the door, a scene animates; little townsfolk skate in circles around a tiny town that lights.

Lily ignores it, which is a blessing.  Her sister, Emma, opens the doors daily for them both.  Lily doesn’t really eat the candy behind the door, and the ornaments for Emma’s tiny tree are too fragile to be entrusted to her tender care, so really it’s just for Emma.  I dread the day she decides it’s no longer beneath her notice.

photo courtesy of www.BloggingLily.blogspot.com

On the main floor a large posterboard cutout of Santa Claus’ head smiles benignly from the powder room door.  It’s a remnant from some past Christmas party, and Emma loves it, so we keep it, tacking it to the powder room door. 

Lily walks past the door and pulls it off the tack.  The tack clatters to the floor, skittering across the tile before scribing slow rocking quarter circles across the tile and coming to rest.  I scramble to pick it up before she steps on it in her stocking feet. 

“Lily, be gentle with Santa.  Don’t pull,” I tell her.  I tack the fallen head back onto the powder room door and guide Lily back into the ‘safer’ environs of the Family Room. 

Santa sits ensconced in velvet.  A human-sized elf stands to his right with a clipboard.  We have a number so that we don’t have to wait in line for our turn.  Lily is allowed to play at the mall playground or investigate the Christmas train while we kill time.  All the children waiting to see Santa are like Lily.  And all of the children waiting in line are different than Lily.  But you know what I mean.  When it is Lily’s turn the elf standing guard over Santa’s person hands us a form to fill out.  Both of us are there so one of use rides herd over Lily while the other fills out the form.  It occurs to me that if I were a single parent, I’d have to fill out the form at the same time as I was watching Lily.  I shake my head that an event designed to minimize stress for autistic kids and their parents could triumph so magnificently overall but stumble at the finish line over such an obvious issue.  I again thank god that I’m not a single parent and that my wife is always there to support me.

Emma asks if we think people will think she’s autistic if she sits on Santa’s lap with Lily.  Part of me feels sad at this.  I ask her if it matters to her whether people think she’s autistic or not.  I think a part of her feels ashamed at having asked the question, as if asking the question means that on some level she’s not proud of Lily.  She thinks for a moment, then shakes her head no.  This brightens me, and appears to brighten her as well.  We ask her if she still wants to sit on Santa’s lap.  She nods and says, “For Lily.” 

When the paper work is filled out, Lily sits on Santa’s lap.  She occupies his right knee, while Emma sits atop his left.  She is calmer when Emma is with her.  Nevertheless a stranger with a white beard is holding her on his lap.  She suffers this curiously for 5 – 10 seconds.  She doesn’t yank his beard, but seems to find brief fascination in the tuft of fur dangling from Santa’s hat.  We furiously thumb shutter buttons and pray for quick focus on digital cameras.  She squirms a bit and escapes to a safe distance to watch as Emma relays both of their Christmas wishes.  Lily’s are guesses.  She never really asks for anything except McDonald’s.  Santa will definitely be getting her a gift card there, if he wants any cookies this year.

When we visit our families’ houses there are lots of decorations everywhere.  It’s beautiful, but dangerous for Lily.  She wanders from “no” to “no”, generally wreaking havoc on everyone’s’ houses without really understanding what all the hub-bub is about.  The family is gathered together.  There are more people than usual in each house, more “nos”, more music and laughter and expectations. 

We try to keep her entertained and minimize the destruction and still visit with the family, but it’s stressful.  Every holiday visit is stressful.

Lily knows who Santa is without really registering what he’s supposed to represent.  Lily knows how to say “Merry Christmas” (when prompted) without really understanding what that represents either.  We put the gifts in front of Lily on Christmas morning, and sometimes she rips the wrapping paper, and sometimes she ignores it completely.  She doesn’t look forward to Christmas, or get excited Christmas Eve for the jolly fat man’s impending housebreaking.  Christmas for Lily has all the stress it has for me, but none of the magical payoff.

I’m doing my best to try to see the world from Lily’s point of view.  I feel like I’ll be better equipped to help her if I try to see things the way she does.  I feel like I’ll better understand what she needs and wants.

Christmas is like magic to me.  But Christmas is like magical holiday torture to Lily.  Lily’s sister, Emma, loves it.  We all want Lily to love it too.  But she doesn’t.   And that’s okay.  We’ll still fight the good fight.  We’ll still try to make it special for her without removing those things that also make it special for her sister.

Some things we can’t (or won’t) change.  The decorations will still go up.  The music will still play.  We’ll still visit family.  And Santa will still be the jolly prowler, sneaking into our home when we sleep to distribute presents.  Even once Emma “knows”, that probably won’t change.

The biggest change and gift we can give Lily for Christmas is to adapt our expectations of what she’ll get out of the experience to something more ‘reasonable’ given what we know about what Lily tolerates/likes/loves.  She still loves the music.  She’ll get presents she’ll enjoy (probably).  But Christmas is NOT magic for her.  Maybe it will be someday, but for now it’s stress layered on top of stress.  It’s noise and crowds and intriguing fragile ornaments and decorations that invite, no demand, inspection but that cannot be touched.  Our expectations for Lily need to be filtered through Lily’s point of view. 

We need to understand that Lily will want to hear “Rockin’ Around the Christmas Tree” dozens and dozens of times.  We need to understand and be patient with her when she investigates the tree, or pulls Santa off the door, or opens the advent calendar out of order, or breaks Christmas bulbs at her grandparents’ houses.

Lily is a happy little girl.  And it seems ironic that we’d take that happy little girl and make her miserable in an attempt to get her Christmas experience to line up with our expectations of what her Christmas experience should be. 

Lily will have a merry Christmas, though Christmas day might not be any merrier than any other day of the week; December may be no jollier than any other month of the year.  But if we’re patient with her, and try to see things a little bit through her big brown eyes.  Maybe it won’t have to be less merry, less jolly.  And relaxing our own expectations might make our holidays a little happier too.

It’s not reasonable to take a child whose entire life and comfort is bound so rigidly to structure and routine, insert ten times the number of restrictions and expectations for one month, and expect perfect compliance, or even anything approaching perfect compliance. 

So to the extent that the holiday stresses will allow us to relax, we’ll relax around Lily during the holidays, and if not ignore her occasional forays into forbidden realms outright, at least understand them and be patient and understanding with them, remembering to gently tell her to “be gentle.”

Words With: Bobbi Sheahan

Name:  Bobbi Sheahan

Website: http://www.bobbisheahan.com/

Twitter: @BobbiSheahan

# of children/diagnosis: I have four kids, one of whom has autism.

Introduction in Bobbi’s words:

Thank you so much for having me!  My name is Bobbi Sheahan, and my husband, Ben, and I have four children.  Our first two children, Lucy and Grace, are barely a year apart.  My daughter Grace has autism. 

“Of course it isn’t autism,”  I’d say.  “She’s affectionate.  Plus, she’s a girl – what are the odds?” (More than 80 percent of those diagnosed with autism are male.)  A near-tragedy finally moved us to discover Grace’s autism. As I read everything that I could get my hands on, I was shocked to realize that a book like What I Wish I’d Known About Raising a Child With Autism didn’t already exist.   I suggested to Dr. DeOrnellas that we write this book to spare other parents some agony, some confusion, and perhaps some lost time and resources.  What I Wish I'd Known About Raising a Child With Autism is my third book.  My first two books, published by Texas Lawyer Press (a division of American Lawyer Media), are reference books for attorneys.  When I left my law practice to turn my full attention to my family and my writing,  little did I know where that path would lead.  For two decades, I used my writing to persuade courts and educate lawyers, but it was in becoming a mother that I  truly found my voice, my inspiration, and my life’s work.   My book is not only the story of my family’s journey of discovery, but my love letter to my daughter and my message of hope for parents.

 AW: What was your first reaction to your child’s diagnosis? 

Bobbi: By the time we had an official diagnosis, we were just relieved to have confirmation of what we had already deduced through three and a half hard years of trial and error.  Grace was very different from the very beginning.  Her behavior ranged from quirky to baffling -- and sometimes frightening.  She didn’t make eye contact, she walked very early, she seemed insensitive to risk and pain but had a whole boatload of sensory sensitivities, she was a late talker, and then, when she did talk, it was not typical.  When we were told that Grace had autism, it was a confirmation of what we’d already pretty much figured out, and it was a means for us to begin to connect with the autism communities and get some meaningful help. 

When I describe what we were observing, you’ll see why the diagnosis was a bit of a relief – at last, we had some understanding of our beautiful daughter and some idea of what she needed!  When Grace was an infant, she was quiet.  So quiet that we began to notice that she didn’t babble or make many sounds at all.   She didn’t cry when you’d expect a baby to cry:  not when she got her shots, and not even when she was hurt.  Not ever.  Not even stitches-to-the face hurt (twice).    She didn’t nap, and, as time went by, she made no moves towards speaking or potty training.  Frightened by Grace’s fearlessness, her ability to defeat childproofing, and her propensity to injure herself, more than one babysitter refused to come back. 

Around the age of three, Grace began to speak in precocious bursts:  the entire script of a cartoon, complete with voices; her favorite book; all twelve days of Christmas; the whole 23rd Psalm.  She didn’t make eye contact, and she patrolled the perimeter of the playground instead of playing with other kids.  She loved the swings, and she seemed not to understand when she injured other people.    Her senses seemed to be completely miscalibrated; her hearing was acute, yet she took an inordinate amount of time to process the speech of others who spoke to her.  The not-feeling-pain thing persisted too; I still cringe at the story of the time that Grace grabbed a hot light bulb and didn’t respond to the burn, but did cry and cover her ears at my shriek as I pulled her hand from the lamp.  Believe it or not, that wasn’t the worst light bulb incident; when she was three, Grace ate a light bulb.  Well, part of a light bulb.  She began eating other things, too, including my anniversary roses.  We wanted so desperately to understand and we felt that we couldn’t reach her.

AW: What was your defining moment of acceptance? 

Bobbi: I don’t know if I can pick just one.  When Grace ate that light bulb, it was a light-bulb moment all right; we knew that we had to find some answers.  Shortly after that, she tackled a smaller child at the top of our stairs; we later understood that she was acting out a scene from the Lion King.  The Moment of Truth for me came several months after diagnosis, and I call it my Duh moment.  After applying myself as diligently as I could, I finally accepted the truth: I could read every book, talk to every doctor, and create every therapeutic tool in the world and it wasn’t going to change the fundamental structure of my baby’s brain that made her act the way that she did. I may be Mommy, but there is no “all better” here. It doesn’t work that way. Whether you want to use the word "normal," or "neurotypical" (NT for short), my kid ain't that. Accepting that was sad and freeing at the same time.  Accepting this truth helped a great deal.  It also helped for us to understand that my sweet husband is also on the spectrum (which we discovered after our daughter’s diagnosis) and that I am either on it or adjacent to it (someday I’ll find out for sure). 

What inspired you to start your website? Your book?  It was because of the three years of “trial and error” that I teamed up with Grace’s psychologist, Kathy DeOrnellas, Ph.D., to write What I Wish I'd Known About Raising a Child With Autism:  A Mom and a Psychologist Offer Heartfelt Advice for the First Five Years (Future Horizons, April 2011).  Let’s face it:  nobody should be as clueless as I was, and they no longer have to be.  We hope to spare other parents some of the pain, discouragement, and confusion that can accompany the early years of parenting a child who has or may have autism.   The book doesn’t just tell my story; it contains wisdom and stories from two dozen autism parents all over the world, as well as Dr. DeOrnellas’ sound wisdom and advice about every issue discussed in the book.

AW: What has been the most rewarding aspect of being special needs parent/writer/advocate?

Bobbi: I love that question!  I actually want to break it down to the three roles because there’s so much there. 

I’ll start with being a special needs parent.  I love my husband and kids, and they bring me great joy.  I don’t want to make it sound easy: the struggles are real and not typical, and there are days that are just hard.  Watching my daughter grow and blossom and defy expectations is a joy for me.

Which brings me to the second part of your question:  being a writer.  Being a writer has been a dream of mine since I was small.  I never realized I’d have something to write about that would keep me up at night and mean so much to me and other people.  What a blessing that is. 

As for being a special needs advocate, it’s an honor to be considered one!  I’ve always been a bit of an oddball and a nerd, and I’ve always found people so interesting – our imperfections, our differences, the things that others don’t accept – and being a part of a community, both locally and through media, is amazing and life-changing.  One recent example is the #youmaybeanautismparentif hashtag on Twitter.  Less than a month ago, my friends Jenny Herman and Elise Ronan started this hashtag (a searchable term starting with the # symbol) on Twitter, and there have been over a million Tweets and ReTweets, and it’s still going strong.  I encourage all of your readers to join in the fun!

AW: What advice would you offer parents of recently diagnosed children? 

Bobbi: You are not alone. You may have already realized that autism isn’t always pretty, but sometimes it’s beautiful.  We worried about so many things, and I wish we hadn’t.  As parents, we tend to worry about stuff that never really materializes and sometimes miss the real concerns anyway.  With autism, that is definitely the case.  For example, I worried that my daughter wouldn’t have wonderful people in her life because we had encountered so many frustrating situations with people who didn’t understand autism.  Since her diagnosis, we have met the most wonderful people – many of whom we might never have met if it hadn’t been for special needs. 

I would also advise parents to really give themselves a break:  take some deep breaths, gather their families close, and really take their time to understand.  There is a temptation to panic and to listen to a lot of noise in the media about autism, and what you really need is peace, support, and solid information.  You are the parents.  You will figure this out, and this is a marathon, not a sprint.  I wish that someone had told me not to panic early on, that it would really be ok. 

AW: Feelings on diagnosis in 6 words or less

Bobbi: (okay, I took 7, but some of them are really short words :D):

Not always pretty, but sometimes it’s beautiful.

Dear Santa (My almost Impossible Wish List)

"All I want is what I... I have coming to me. All I want is my fair share." 

~ Sally Brown

Dear Santa,


It's been a while.  The last time I wrote to you,  I asked for a Holly Hobbie Easy Bake Oven.  


Which, I actually got.  Thanks :)


But now I'm an adult and I'll be damned if I'm going to ask for something like an oven...someone may expect me to use it.  


Anyway - now that I know you make good on your word.  I thought I'd put together a little list.  Just in case you're wondering what a busy working mom wants.  I've given this list great consideration.  These aren't your run of the mill items like a pair of slippers or earrings.  These can't be found at your local Lord & Taylor or Target.  These are custom made gifts that only Santa Claus can provide.

• The perfect pair of jeans:  Kind of like those Traveling Pants jeans but they are just for me. Dark denim, only.  3 pairs: skinny, modern trouser & bootcut - I like variety. I want jeans that are perfect; they will always fit, even after a weekend of eating cake and fried chicken.  I can go out to eat in them and not need to unbutton after I'm done with my meal.  AND - I want them right at the waist - I am too old to do crack.  Especially while at the playground.  (bonus: If I can wear my highest heels or flattest flats - the length will always be right.) 
• Speaking of high heels:  I want a pair of sexy high heel shoes and/or boots that I can parade around all day long in and still dance in all night (because you know, I go out dancing all the time).  And I want them to feel as warm and cozy comfortable as a pair of Uggs.  No color preference. Surprise me! 
• A Magic Washer/Dryer:  The washer will be able to wash all different clothes at once without any damage.  All stains come out - without some kind of extra spray.  And I want a dryer that dries clothes without a single wrinkle.  Collars - no problem?  Pant pleats - of course.  A pleated skirt - that's the specialty!  And wouldn't it be fantastic, if all the socks came out perfectly matched.  
• My Waist: From 1999 - I was 24.  I don't think further explanation is necessary.  Though, I guess, I could work on this myself if I absolutely had to.  
• No Maintenance Eyebrows:  I've been plucking, waxing, tweezing those bad boys for almost 2 decades - I'm tired.  I just want thick, clean, perfectly arched brows with absolutely no maintenance.  No wax, no tweezers, no brow powder to fill in the gaps.     
• An Answered Question:  I want to come home from work and ask The Boy about his day.  And I'd like him to answer.  This is the one thing that seems the most attainable.  I know this will eventually happen, I'm just not sure when.  I'm not sure if you could help out with this - but it's worth a shot.  I wouldn't need anything else ever if you could make this happen sooner rather than later.      

I realize some of things may be out of the realm of possibility - especially the first 3.  So if any of these items puzzle you - ask Mrs. Claus.  I am sure she'll know what to do.  


Thanks Big Guy...


Your Friend for Life, 
Lisa 

What's on YOUR Impossible Wish List?

*post inspired by the Unknown Mami - Have a Chicano Christmas 

El Qué Dirán or What They Will Say (about Autism)

Even though I grew up in a bilingual home, I was raised speaking English only.  So Spanish became a way to keep me out of adult conversation.  And when the conversation lapsed into Spanish it usually meant: 

(A) I was in trouble;
(B) My mother was pissed;
(C) There was some serious bochinche; or
(D) All of the above   



At a young age I realized it would be in my best interest to understand key words and phrases.  "El Qué Dirán" being one of them.  The El Qué Dirán were whispers among women, rarely were the words said to your face.     


For those unfamiliar with El Qué Dirán, Urban Dictionary* defines it as: 

The unspoken belief in Latin-American culture that every person’s actions in society are subject to the scrutiny and criticism of every person they know. El Que Dirán is a way to regulate the behaviors of the fringes of Latin America, by concentrating the disapproval of their parents and friends through gossip.

Well, when you have a child with autism or any other invisible disability, the  El Qué Dirán goes to a whole other level.  You and your child become the target, the source of gossip and judgement by friends, family, strangers and educators.  And the things people think suddenly become okay to say.  Well, it's not really okay...but you know what I mean.

When you tell other parents that your child has autism they will say:

• "Really, but he looks so normal.  Are you sure he has autism?"
• And you start to wonder -what is normal anyway? 
• "He has autism?  I don't understand, he's so smart, he can talk..."
• Because they assume autism impairs intellect and/or the ability to speak
• "Oh, autism is no big deal.  That's the diagnosis of the moment."
• Even though they have no idea what it's like to parent a child with special needs
• "He just needs a sibling - when are you going to have another baby?"
• But they don't know, you've tried. You are trying. It just hasn't happened.
• "He probably only acts like that around you."
• Oh, I see...my parenting skills are the problem. 

And when you talk to those other parents about how your child reacts in certain situations like being scared of Santa Claus, or understanding certain concepts or adjusting to new situations (like school or parties) or potty training they will almost always say:

• "Oh autism has nothing to do with it, that's all kids."
• Except you know autism has everything to do with it and that it's not all kids.      

When you are sitting in  IEP/school meetings, fighting for services and appropriate placement for your child, the DOE folks will say:

• "You are killing your kid with services.  When does he get to play?"
• Except your child doesn't know how to play.  That's why the services are needed.
• "Are you one of those moms who doesn't let their kid drink milk or eat bread?"
• Because even though they say they understand autism, they really don't have a clue.
• "Just because you bombard your child with services, it doesn't mean you'll get the outcome you want."
• Because they don't get paid to believe in your child.
• "As a parent, I understand..."
• And you wonder if they really understand because they didn't say "as a parent of a special needs child..."

And don't even get me started on some of the things family has said to me about autism.  That's a blog post in itself.
Then there are the things unsaid - the stares, the eye rolls, the shaking of the head while your child has a public meltdown.  All they see is bad behavior and even worse parenting.  They don't see autism.  How could they?  Your child looks so normal!

But it's not so bad.  Because sometimes they will say:

• "Are you in Special Education? You work really well with him."
•  No, but I've taken a few crash courses.
• "He's lucky to have you."
•  I'm the lucky one. 
• "He's come such a long way."
• He has!  And he has so much further to go.
• "I honestly don't know much about autism.  Tell me more."
• One of the very best things someone can say, I only wish I heard it more often.  

In the years since The Boy's diagnosis, I've learned to hold my head a little bit higher.  My skin's gotten a little bit thicker.  I've learned when to speak up.  And when to keep quiet. 

Because I know it's not about what other people say, it's what I do that matters.  


* This post has been sitting in draft for over a month, reading Tessa's (Apple and Autobots) post - Straight From The 'Fridge--Er, The Incubator  prompted me to finish it.  Head on over there, you'll never believe some of things she's heard.
And for more on the El Qué Dirán in Latina culture check out these 2 posts:

• Unknown Mami's post ~ "El Que Diran" - *I swiped the urban diction definition from her
• The Rules of Growing Up Latina on the Tiki Tiki