And Then There’s Nora…

When a local mama shared her son’s diagnosis with me, I jumped at the chance to meet up with her to share war- and warrior- stories about our special needs babes.

“Sometimes I get the feeling that people just don’t like him,” she said.

“Huh.  Yeah, I totally get that, but not with Lucy.  I actually feel that way with Nora.”  And it’s true.  I do feel that way.

The nice thing about Lucy is that nearly everyone she’s surrounded with understands the nature of her disability.  They are more prone to be forgiving with Lucy because they can recognize her behaviors which attributes to her Autism.  When Lucy’s beginning to get agitated or angry, they generally applaud her for simple things.  And by all means, yes!  Those are great accomplishments- continuing to work through hard tasks such as grocery shopping is exceptional!  We constantly celebrate her successes and growth- even when its baby steps.

And then there’s Nora.

People are noticeably less forgiving with Nora- and by all means I understand it.  It still doesn’t make it fair.  And unfortunately for her, life will fall like that.

It’s important to me to share my family’s stories with you because, like yours, my family is entirely unique.  I understand what it’s like as an outsider looking in and I can imagine people wondering, “What would it be like to have a child with both autism and gender dysphoria?”

It’s important to me to share my family’s stories with you because I believe when you are able to put a FACE and a NAME to our differences, people are SO.MUCH.MORE. prone to open their hearts and LISTEN.

So, at least that’s what I hope to be doing, pouring out all of my honesty and sharing my heart- as a voice of equality, change, acceptance and awareness.

I can write a million entries about Lucy and barely mention her sister’s name.  Not because Nora is unimportant or insignificant, but because she’s totally normal.

Well, as normal as Nora can be.

She didn’t ask to be born into our family, and certainly not as Lucy’s little sister.  She didn’t ask to have a sister with special needs.  She didn’t ask to follow her lead.

Like I said…. I can write a million stories about Lucy and barely mention Eleanor’s name, but it would be nearly impossible to write about Eleanor without mentioning Lucy.

You see… it’s so much of Lucy that makes Eleanor unique… her greatest characteristics are pronounced through the enormous love she has for her sister.

She is truly compassionate and empathetic.  She’s profoundly selfless for a four-year-old.  She’s fiercely independent and spirited.  She’s fair.  She’s everything you’d want in a sister; battles you like hell, but battles and conquers the world FOR you.  Without fail she’s on Lucy’s team, even when she’s the one in distress.

These are beautiful traits that I so admire in my sweet Eleanor and can often be unnoticeable underneath all of that sass.  (So unnoticeable that I even have to remind myself.)

Because she’s also really loud and obnoxious; wild, untamed and feral.  She goes a hundred miles an hour to Lucy’s one.  She’s greedy and demanding, high maintenance and particular.  She’s the “I’d rather have five Lucys over one Eleanor,” because she’s hard.

Believe me when I tell you it’s hard to parent someone with such a solid personality.  Someone who feels all the feels- the high highs and low lows.  Especially when SHE’S.JUST.LIKE.YOU.

And yes, I do feel like oftentimes people don’t ‘like’ Nora.  And I also understand she’s a LOT.  A LOT of everything.  But it’s impossible for me to forget that she’s also A LOT of wonderful, packed with love and energy and excitement for life.

This girl is going to change the world.  She is going to share her love of life in a BIG way.  She’s going to give so much to the world with her compassion and true empathy towards people.  And I think together they are going to teach the world about truly embracing our differences and loving one another.

This girl is going to change the world.  And I get to be her mother.

 

xoxo

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You Have No Idea

A simple question I had on a local FB Mama page made me feel all the feels today.

“Wondering if any local mamas have kids with gender dysphoria.”

Seems to me that if you were a local mama that had a child with gender dysphoria you’d be thrilled to find another: Yes! Me! I will message you!  {Or so I thought I would find…. turns out I was wrong.}

Seems to me if you were a local mama and you were not parenting a child with gender dysphoria you’d scroll on by- maybe send a cheesy heart emoji or write “praying for you,” Even though I’m confident your prayers are, ‘Thank God that’s not me’).

Seems to me like a local Mama page would be filled with all kinds of mamas who are hoping to reassure others and strengthen our sisterhood with positive notes and love.

It would have been easy to simply scroll on by, like the other 99% of facebook feed you pass daily.  But instead you decided to be “encouraging,” by being ignorant, uneducated, and oblivious.

“I know this will not be very PC to say, but I would caution against labeling this.  I was a tomboy for my whole life- literally until I graduated from high school.  If I had been labeled gender dysphoric, that could have been very confusing for me.  I would recommend that you trust the process (and the Creator) and encourage your child that likes/preferences don’t change your biology….”

Hey there, lady!  Thank you for your extremely unwelcome and distasteful advice.

Do I think her words came out of hate? No. But I also think she has ZERO idea of what she’s talking about.  I think she has assumptions of what gender dysphoria is (or isn’t), and questions its validity.

Thanks to my sister and the exchange of some profanity, I was able to find some words after she reminded me to keep breathing.

“A tomboy is not someone with gender dysphoria. It’s comparing apples to corn dogs. It is not a social preference in a neurotypical brain. She has an actual cognitive and neural difference in her atypical brain. I appreciate your very specific experience, but this is not our circumstance.
Finding a community of like parents is important with children having any diagnosis, which is what my post was intended for.”

She went on to apologize, saying she didn’t mean to be offensive, but rather encouraging.  Though it’s still SUPER UNCLEAR TO ME  how your totally unrelated circumstance could be encouraging…

So I had all the feels.  Maybe a morsel of rage.  Some sadness and annoyance.  But more than anything I feel really frustrated.

I get it- I really do.  It’s a confusing and complicated topic.  But have you ever realized that maybe it’s confusing and complicated because you’ve never experienced this before?  Maybe it’s confusing and complicated because you have inaccurate assumptions.

I get that it can be political, that it can be a topic of religious beliefs.  I get that it can make you feel uncomfortable because you’re unsure which pronouns to use or you’re afraid of saying the wrong thing.

This is our life.  We live this every single day and, I’ll be honest, 90% of the time this is completely a non-issue.  Because Lucy is our child, because we love her with every fiber of our being, because we have no interest in changing who she is and who she will become.  I feel so blessed to live in a world where she’s allowed to be who she is, even though our road will be tough.

I didn’t choose this for my child.  I never hoped this is something we’d experience as parents.  But she’s certainly not ‘just a tomboy.’

We are surrounded by loving and accepting family and friends who love Lucy for who she is, even when it’s complicated.  We are beyond grateful for the love they give her- and us- by going with the flow.  Because, honestly, I don’t know WHAT THE HELL I am doing.  We are taking this day by day, never being sure of anything but our B-O-U-N-D-L-E-S-S LOVE for her.

So thanks, but no thanks, lady.  I’m just gonna keep lovin’ my kid and mom on.

 

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Take the Credit

I hadn’t slept, wasn’t eating well, and quickly I had found myself spiraling out of control, all stemming from a small mistake the county made almost 2 years ago.

In short, Lucy should have been able to receive Medical Assistance through TEFRA (state funded medical assistance for children with disabilities) the moment that the county deemed her “disabled.” But instead of leading us in that direction and completing the paperwork necessary for TEFRA, Lucy qualified for MA based on our income.  And now, two years later, since our income no longer qualifies under those guidelines, she will have- quite a lengthy- lapse in coverage until the paperwork can be completed and reviewed by SMRT (state medical review team).

Unfortunately for us, this goes so much more beyond basic medical insurance.  Lucy’s MA covers her twice-weekly visits with her PCA (an out-of-pocket expense of $30+/hour) and her upcoming visits to the Child and Family Psychology Center.

The moment I received that letter in the mail is when the world began crashing down, a whirl-wind of circumstances beyond my control that feels like elephants standing on my chest.  And of course, when it rains IT POURS.  The constant worry of “how am I going to pay for this?” among many other woes, I was completely ignored and hurt by someone who I held in such a high regard- a constant reminder of how inadequate and unworthy I am.  And the downward spiral of life continued.

Soon I found myself truly wallowing each day, wearing my uncertainty, hurt, and sadness on my sleeve.  I was embarrassed by my sludgy attitude, but nothing seemed to help pull me out of the pit.  You see, that pit of anxiousness is where I fall, and instead of pulling myself out and breathing for air, I become totally encapsulated and I let darkness seep in.

One day I received a call from Lucy’s primary doctor.  An angel in disguise, who I’m convinced heard my hopelessness through the phone, asked how Lucy was doing in Kindergarten.

“Oh my gosh!  She’s doing amaaazing!!!!  She’s surpassing every expectation we’ve ever had.  I… well, her whole team, is constantly amazed at her growth this past year.  Her teacher said she’s running out of things for her to read, she’s getting little to no para support in her classroom.  She’s just… she’s just so unbelievable.  She’s the poster-child for early-intervention.  I think of where she would be without all the help along the way and…”

She was quick to cut me off.

“You know, we’ve talked about this before.  While that may be true, I urge you to give yourself some credit.  She wouldn’t be doing so well without you, without your husband.  Believe me when I tell you that this is not always the case.  You’ve worked really hard to get Lucy the things she needs and it’s always worked out.  That wouldn’t happen if you weren’t an exceptional mom.”

You’ve worked really hard to get Lucy the things she needs and it’s always worked out.  

My Type-A Personality often shines in the ugliest ways, while others have to endure my wrath when I am (or feeling like I am) not in control.  But it wasn’t until that phone call that I realized that’s the nature of the beast.

Paperwork, deadlines, phone calls, evaluations… the county, the state, the school district.  This shit wouldn’t get done without my obsession with, for lack of a better term, getting shit done.  

I think I fixate so much on how Lucy is changing my life… about the positive ways she’s impacted me.  I give her so much credit for living in a world that doesn’t always make sense to her, for working hard on tasks we often take for granted.  I give her so much credit for her infectious smile, love, and happiness that changes the way people view others with disabilities.

I fixate on her so much I often forget that I, too, have role in her success.  I play a big part in who she is and who she will become.  Which is a terrifying and beautiful honor all at the same time.

The truth is… it will all be fine in the end.  Will I worry myself into hives and sleep deprivation? Likely.  But that doesn’t take the fight out of me.  So rather than focusing on the unknown and the worry of what is to come… I’ll let the Beast take over and fight for what she needs and what she deserves.

I am Mama.  Hear me roar.

xoxo

This is Harder Than I Thought

I’m tired.

I’m angry.  I’m a little bitter. A lot lost. I’m feeling overwhelmed and totally inadequate.

I’m also Lucy and Eleanor’s mother.

Which is harder than I thought.

Late last week, I raved about Target and their gender neutral clothing line available in the Girl’s section.  While Lucy sat in the cart, I held up each shirt on the rack.

“This one?

“No.  It’s beautiful! But I don’t like beautiful.”

I showed her every option, even when I knew she wouldn’t choose it because 1) she sometime surprises me (anyone remember the panda pants!?) and 2) I like to keep all options open.

Clothes shopping is terrible for her; lights, sounds, textures… and, most of the time, only clothes that she’s not interested in.

(Side Note- this question gets asked of me a lot: If you’re so open to her wearing whatever she wants, why don’t you let her buy ‘boy’s clothes’? Lucy is built like a girl.  She is also very tall and thin.  Shirts from the boy’s section are typically too wide for her.)

And then there it is!  I picked up a dinosaur shirt and she screamed with absolute glee!

“Mom! Is that a boy’s shirt?”

“I dunno, Luc.  Maybe.” We specifically don’t use the terms ‘boy’s clothes and girl’s clothes’ with her because it’s becoming increasingly harder to keep those barriers open and allow her to simply be comfortable in whatever clothing feels right for her.

She came home with the shirt.  She kept among her most precious items for a few days before putting it away in the top of her dresser drawer.  This morning, Devin was helping Lucy get dressed.

“Lucy, do you want to wear your new dinosaur shirt?”

“No! I can only wear it in summer.  If I wear it to school, everyone will know I’m a boy.”

…..sigh.

Do you see what I mean? This is hard.  It makes me feel sick when I think about it.  I can feel my face becoming ghost-like and my heart tearing into little pieces.  We are doing the best we can, Devin and I.

I love her so much.  I love her if she is a boy or a girl or a fricken chimpanzee.

“Lucy, do I love you if you’re wearing girl’s clothes? Or do I love you when you’re wearing boy’s clothes?” I asked.

“Ha! Both. You always love me.”

My situation isn’t that different than yours.  We all have the same objective as parents- to support, aid, comfort and love our children to help them find themselves. That’s all we want as parents!  We want to help our children become the absolute best they can be.  So believe me when I tell you, I am fighting.  I am praying.  I am hopeful I’m doing enough to ensure she is loved no matter who SHE decides who she is.

We do not get to decide.  Society does not get decide.  We are simply lucky to be living in this world beside her, as she teaches us about love and patience.  She teaches about human interaction, love without words, about believing in one another.

I don’t know how to do better at this point.  I don’t know how to tell her that she can be who she is, wherever she is.  She doesn’t have to pretend to be someone she’s not.  It’s a constant struggle and her unwillingness to be open with people is a constant reminder that I may not be doing enough.

There are people who think we make this up, by the way.  They really believe that she’s ‘just going through a stage’ or they tell me they’ve known girls who’ve ‘been real tom-boyish too.’  We’ve lost friends because of this.  And as much as I want to say “I don’t care what anyone else thinks”…. that’s only true to a point.  Because though I won’t let it affect my life and how I parent Lucy, it matters if Lucy feels supported or not.

Gender Dysphoria exists in children.  Gender Dysphoria in those with Autism is more common than you think.  Their minds are often very black and white while gender remains a strong gray area.  Society decides how boys feel, look, behave.  What boys like and don’t like.  Society tells us what girls will think, what she’ll be when she’s grown up, and how she should dress.  We have been so brainwashed into gender stereotypes.

I don’t know how to help Lucy feel confident in who she is and who she is becoming.  I don’t know how to live in a world that doesn’t accept her for who she is.  But I promise you that I am fighting for every opportunity to make sure she knows she is loved, that she is supported, and that she was meant to be Lucy.

If you have been supportive of Lucy, thank you.  We understand that it can be a hot-button issue to talk about, but I encourage you to be open.  Listen.

From my heart to yours.

xoxo

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We Are Not Alone

Autism is a neurological condition characterized by challenges with social skills, repetitive behaviors, speech and nonverbal communication, as well as by unique strengths and differences.

We aren’t doing this alone.

From the beginning we had people watching out for her, making subtle but sweet comments about our little Lucy.

“Oh! I can’t believe she’s not learned how to wave yet.”

“She really likes to bounce.  She’s very fidgety.”

“I never noticed how often she repeats your words.”

It was just a couple things at first: the bouncing- oh! the bouncing- her obsession with letters, her spacey stares.  Then came the echolalia.  Her totally awesome and odd ability to do shape sorters faster than most adults.

But we’d never done this parenting thing before… we didn’t think any more than our child was bright, funny and a little quirky.

When the evaluations and assessments began, things became a little more clear.  She never babbled as an infant.  She never pointed.  She never waved.  She could say all of her letters frontwards and backwards and sideways, but couldn’t say many words and phrases.  She was memorizing movies before she was two.

Then came her first teachers; Jen & Ginger, eager to teach Lucy some beautiful new skills.  Then came Mrs. Steele & Miss Laura at her first community preschool.  When it became too overwhelming for her, Miss Becky swooped in, stuck her in a classroom with a handful of other special needs kids, the most amazing paras and after a year- voila!- she headed to community preschool again.  Lucy spent almost two years with Miss Laura and Mrs. H, learning incredible new skills like writing and cutting, but more importantly- learning how to be in a group, participating, playing with friends, asking for help, advocating for herself.

I was terrified for Kindergarten.  But once again, Lucy is pulling in rock star status- with the help of Mrs. Davies and Mrs. Stenzel, learning and growing remarkably well (and fast)!

But see? I haven’t even mentioned the amount of people who continue to love her EVERYDAY for just being Lucy.  Her paras, her friends, her church, her community- WE ARE NOT DOING THIS ALONE.  And we are so grateful and so blessed to live among people who continue to support her and our family.

And I’ve tried to be honest about it all, about how funny it is and how terrible it can be.  The ups and downs feel like mountains some days and others we wade in calm water.  She can’t go into Aldi because the “lights are too loud.”  Getting a haircut is physically painful for her.  She lines up her toys several times a day and will be completely frazzled until each item goes back in its spot.  She can get physically aggressive over absolutely nothing.  She could lay awake for hours in bed if we didn’t give her a melatonin.  Going somewhere out of routine not only takes serious bribing, but coaching, repeating and going through each step of the process.  Over and over and over.  And she’s still pissed about it.

It was always my hope that by being so vocal about Lucy and about our family that it would allow people to better understand the ins and outs, the good and bad of living with a child with autism.  It was always my hope that by giving you a little window into our life it could change how you see others- how you teach your children about differences… how you react to a little boy in a sensory overloaded store while his mom is trying desperately to get him out… how you interact with adults who don’t look you in the eye or who may be a bit “off”.

Autism is confusing.  It’s overwhelming, frustrating, and different.  But it is also brave and bright.  It’s colorful, hilarious.  It’s up and down and all over.  It is teaching and learning.  It is a journey.

It is not a puzzle piece waiting to fit in a puzzle.  It is its own puzzle.

Please keep talking about it.  Tell your friends, tell your children.  There are wonderful resources out there to educate yourselves and your loved ones.  Open your hearts to people who are different than you.  Look for their strengths rather than focus on their weaknesses.

It may be World Autism Day, but every day is Autism Day in our house!
We stim. We laugh. We line things up. We push and encourage. We try new things. We repeat. We learn. We flap. We have routines. We conquer. We teach. We hope. We inspire. We support. We accept differences. We advocate. AND WE LOVE.

 

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Saying Goodbye to 20

I remember at 17-years-old, feeling possibly the lowest of my lows, being told by an adult that I had a “strong personality.”

I was mortified, offended, embarrassed, devastated.  I was trying to cope with the loss of a friend, after months of fighting- as only teenage girls do- and realizing that reconciling had lost its chance.  I came to this adult completely empty, desperately needing my tears to heal my broken heart and instead of making me feel better,  she brought me down a thousand steps.

Looking back, of course I know now that she was honestly trying to help me find myself, even though it took (and will take) many more years of self-discovery.

At 17, I knew I was obnoxious, loud, and even annoying- but I had no idea how to positively channel that “strong personality” energy.  It left me so weak and so insecure.  During elementary conferences, my mom was told I was “a social butterfly.”  In Junior High I was “chatty” and Senior High, the inevitable, “disruptive.”

By the time I reached my first semester of college, I received an email from my professor telling me that I needed to speak up in class if I wanted participation points.  Little did he know I was miserable, digging my fingernails into the palms of my hands, desperate to start new.  Quiet, respectful, introverted.

WHY DIDN’T ANYONE EVER TELL ME THAT YOU CAN’T CHANGE YOUR PERSONALITY TRAITS? Well, I am sure they did… I just didn’t want to hear it.

Years later I was asked to complete a Myers- Briggs assessment at a synod CYF (Children Youth & Family) meeting.  No surprise.  ENFJ- Extraverted iNtuitive Feeling Judging.  I raised my hand to the dear presenter, “So… how do you change what you are?” Everyone quietly chuckled.  “No, I am serious.  Like… can you train yourself into being something else? I want other traits.  I want other skills!”

“You use them for good.  You don’t change them.  You use your gifts in ministry and then you thank God for them.”

Well, shit.  That’s not what I wanted to hear and I’m certainly not thanking God for this mess He created.

And still, more fingernails into the palms.  ‘Do not speak unless it can be a positive contribution to the conversation.’

I found myself teaching a lesson to my Middle Schoolers a few years ago about gifts- about  God uniquely creating each of us, and in my heart I was screaming:

“You alone created my inner being. You knitted me together inside my mother,”

“You made me; you created me,”

“We are the clay, you are the potter; we are all the work of your hand,”

“And the very hairs on your head are all numbered. So don’t be afraid; you are more valuable to God than a whole flock of sparrows,”

“For we are his workmanship,”

“All of you together are Christ’s body, and each of you is a part of it.”

God was using me in ways I couldn’t admit.  Using me as a teaching tool.  If you’ve seen me teach my middle schoolers (or even if you haven’t), you know I get really passionate.  My arms flail around, my voice gets loud and shaky, I say things like, “THIS IS SO AMAZING! ISN’T THIS AMAZING?! ISN’T GOD’S LOVE SO AMAZING?!”

“Okay, God.  I hear you.” And after twenty-some years of loathing these pieces of me, I understood the point.  In time Anxiety, OCD and Depression diagnoses would come, which came more understanding of the way my brain worked, the way I felt, and the ways in which I could find peace.

“You have a voice I wish I had,” a friend once said to me after reading an entry about Lucy.  And it wasn’t until then that I realized…

I did not lose myself in motherhood, unlike many woman.  I have found myself in more ways than I ever could imagine.  Before motherhood, I didn’t know WHY I had some of these gifts; only to have it be revealed to me that it was out of PRIVILEGE that I am able to be God’s hands and feet.  It is out of PRIVILEGE that I can teach people about Autism, about my story, about our story.  That I can use what I’ve learned in motherhood to help others in their struggles.

I have been lost before and it wasn’t until I had this amazing, all-encompassing love for two tiny humans that I’ve found out who I am and what I want to be.  I’ve never had this drive to be better, to love more, to use my gifts.

I am not going to promise you that at 30 years old I am going to have it figured out.  I am not going to promise you that at 30 I am going to love every piece of me.  But I do think that 20 is hard.  I think 20 is learning how to “adult.”  My 20’s was fast-paced– college, marriage, graduation, babies, buying houses, more babies, living, loving and learning (SO MUCH LEARNING.)  My 30’s won’t be boring or slow, but I do believe this part of my journey- this right here- feels good. I feel determined to know myself and continue to find myself in the midst of this crazy life.  I feel empowered to use these gifts I once hated, to speak up for those who are unable.  To be raw and honest, knowing that we each have so much to share with one another.  To continue to learn and grow, to be a role-model for my children. To believe and trust in myself.

 

“This isn’t something that you only struggle with at 13-14 years old.  Adults struggle with it.  I struggle with it.  But I think it’s kind of a good thing- life would be boring if our journey was simple.   We can choose to not use our gifts, but that’s being lazy.  That’s being complacent.  That’s belittling God.  Telling him that His work- YOU- isn’t good enough.  Or we can choose to use our gifts, boldly and proudly.  Understanding that we make mistakes.  Understanding that we’re not perfect.  Knowing that we are an unfinished masterpiece, while our Artist continues to work on us, we’ll become more beautiful as our picture becomes clear.  Our journey doesn’t end as adults.  We are in for a life-time of self-discovery.  What a gift!”

xoxo


ENFJs are natural-born leaders, full of passion and charisma. Forming around two percent of the population, they are oftentimes our politicians, our coaches and our teachers, reaching out and inspiring others to achieve and to do good in the world. With a natural confidence that begets influence, ENFJs take a great deal of pride and joy in guiding others to work together to improve themselves and their community.
People are drawn to strong personalities, and ENFJs radiate authenticity, concern and altruism, unafraid to stand up and speak when they feel something needs to be said. They find it natural and easy to communicate with others, especially in person, and their Intuitive (N) trait helps people with the ENFJ personality type to reach every mind, be it through facts and logic or raw emotion. ENFJs easily see people’s motivations and seemingly disconnected events, and are able to bring these ideas together and communicate them as a common goal with an eloquence that is nothing short of mesmerizing.
The interest ENFJs have in others is genuine, almost to a fault – when they believe in someone, they can become too involved in the other person’s problems, place too much trust in them. Luckily, this trust tends to be a self-fulfilling prophecy, as ENFJs’ altruism and authenticity inspire those they care about to become better themselves. But if they aren’t careful, they can overextend their optimism, sometimes pushing others further than they’re ready or willing to go.
ENFJs are vulnerable to another snare as well: they have a tremendous capacity for reflecting on and analyzing their own feelings, but if they get too caught up in another person’s plight, they can develop a sort of emotional hypochondria, seeing other people’s problems in themselves, trying to fix something in themselves that isn’t wrong. If they get to a point where they are held back by limitations someone else is experiencing, it can hinder ENFJs’ ability to see past the dilemma and be of any help at all. When this happens, it’s important for ENFJs to pull back and use that self-reflection to distinguish between what they really feel, and what is a separate issue that needs to be looked at from another perspective.

Honors Breakfast

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This is the face of someone who “enjoyed” Honors Breakfast.  And by enjoyed I mean… it went terribly.

When I opened Lucy’s backpack on Monday afternoon and read the letter my jaw dropped to the floor.

“Are you sure?” I asked her teacher.  “Like, it’s not every kid? She was actually chosen to be January Student of the Month?”

Sure enough, she was.  For showing kindness, leadership, and great worth ethic, my daughter, was chosen.  And of course, then I felt like a terrible mom for thinking it may be a mistake- maybe an oversight.

She may never make friends.  She may never be reading or writing at grade-level.  She may never win these stupid awards for normal kids because she’s.not.normal.  I had to tell myself these things.  I had to prepare myself.

My eyes welled with tears and I screamed.  “Lucy! Do you know what this means?”

“Yeah! I had a good day!” She was beaming- so proud of herself.

We talked about it for two whole days.  We held hands and jumped up and down on our kitchen floor.  We danced around the counter island and had celebratory peanut butter cookies.

What do you think you’ll eat for breakfast? Chocolate cake.

How many other kids do you think there will be? 100.

Do you think you’ll get a certificate? I hope I get chocolate cake.

Seriously.  She was so proud of herself.  She wanted to tell everyone.  She knew how hard she’s been working and knew this breakfast would be all about honoring her.

And then morning came and in those first few moments, Devin and I knew that it wouldn’t be a good morning.  She fought everything- getting dressed, brushing her teeth, wearing socks.  I finally had to carry her out into the garage, begging her to remember how excited she was for this.

I barely got her through the school doors.  She sat down at her spot (with a princess place mat ugh, she hates princesses) while I got her breakfast and tried coaxing her into eating something.

“There’s no chocolate cake.”

The other parents were kind when I saw them eyeing her frustration, “Hard day for her,” I whisper.  “Different kinds of days are hard.”  And I stare at the other kids instead of my own.  Smiling and laughing… actually eating breakfast.  And then I wonder if the other parents know.  Or do they just think she’s a bratty kid who hates mornings? I wonder what they’re thinking when we exchange tiny smiles.

While the principal was trying to give an inspiring message to the students, Lucy was talking.  To herself… to me… I’m not really sure.  She kept talking about peanut butter.  And chocolate cake, of course.  “I want to leave.  I’m gonna leave now.” Shhh, Lucy.  Listen, please.  She stood up, sat back down, stood up, etc.

It feels like a slap in the face, a slap of reality.  Because there are some moments I simply forget.  We go on living our “normal” lives just as you all do because this IS normal for us.  This is our everyday. But then this happens and it’s like getting slapped with an Autism stick and it’s a sudden reminder that she’s not normal.

Let the record show that I don’t give a shit about being normal or labeling anyone as “normal.”  But that doesn’t take away the fact that here I am, standing next to these proud parents who are watching their kids behave appropriately, while I’m over here convincing my kid to stay seated at the table.  It doesn’t take away the fact that she still struggles.  It doesn’t take away the fact that she was SO DAMN excited about this breakfast, but her anxiety got the best of her and she couldn’t overcome how out of routine this was.

She did stand up to accept her certificate.  She did stand underneath the banner for the photo, of course, with a gnarly pirate face.  Those things I’m proud of.  She didn’t freak out when the principal tried to pat her on the back.  She was happy to go into class.

She was happy to go into class.

And.  She was chosen.

Her everyday is so much better than we expected.  So much better than anyone expected.  So much better than anyone had prepared us for.

She’s killin’ it, folks.  She’s learning and loving.

And she’s teaching other people.  Oh, she has so much to teach us.

xoxo

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