I find myself at a bit of a loss for words -- which is really saying something for me -- when it comes to talking about this book project, Poor Girl, Poor World, a story about a little girl on the spectrum.
I don’t consider myself a children’s writer, but I’m trying to respect the craft enough to go where creativity leads me.
I am but a vessel (and a rusty one at that) for the movement of ideas.
And the idea for Poor Girl, Poor World came to me in the shower -- as most good ones do -- on a rare occasion when I was not also being monitored my multiple tiny humans screaming at me or trying to eat toilet paper.
At first this was a poem for… and about my daughter, Maggie.
Who has transformed over the last year in so many profound ways. The most notable of which is her ability to communicate to us a little bit of how she sees the world.
And it’s certainly not how we see it.
I learn so much through her eyes.
I learn to look for the beautiful details, the patterns of movement and ground myself in the things I can feel.
I learn to be a more mindful, present person and I am forever indebted to her for it.
I hope a little bit of my girl shines through this story.
I hope others, children and adults alike, can relate to its message.
I hope it works as a mechanism for increasing inclusion for those who see the world a little differently from the norm.
I hope readers see how very rich those with neurological diversities are, and how poor a world we would be without them.
My girl is three today.
I am, admittedly, a bit of a disaster.
Teetering on a tightrope between relief as she becomes older and more self-sufficient, and a deep sense of fear for what this next stage of life will throw at her.
I felt guilty writing this. Like it was inappropriate, somehow, to not focus only on the positive milestones reached. But I'm just not in that headspace today.
THREE is a big number in the autism world.
It's the closing of the most influential early intervention window. It's when the conversation shifts from hopeful suppositions of "catching up" to a discussion of how to support a child with a disability long term.
I don't know who will read this, but part of me wishes that I could reach every other autism mom out there and just tell them it's okay to hurt, to feel this thing.
Autism parents seem to be fed two different messages: autism is either seen as something to be cured or as something to be passively accepted.
Parents are told we can "heal" our autistic children, which I personally feel is damaging and unsettling and frankly, in many cases, impossible.
We spent a year and a half chasing this philosophy for Maggie; we tapped into functional medicine, homeopathy and neuromovement on top of all the traditional therapies.
And I wouldn't change any of it, because we have helped her, but we can't fix this. We can't make it go away.
(To be clear, autistic presentations may be accompanied by or the result of other conditions, called "comorbidities," but in those cases, autism is not the primary culprit and addressing the primary condition can make it appear as if autism itself has been cured.)
For children like Maggie, autism is both a primary and pervasive condition.
It's here to stay and influences every aspect of her development.
I'll never forget the moment that this realization hit home, sitting in the car with my husband after a big neuro appointment that gave us absolutely nothing.
"What do I do now?" I asked him. "Who am I to her if I can't fix this?"
"Now... now you just be her mom."
What he said was simple, but coming to terms with it was not.
Finding a way to fix the problem had been my coping mechanism.
I'd spent so much time racing that under-age-three early intervention clock and delving into every possible solution... that I didn't know how to just be a mother to my daughter.
As parents, we're either being told that we need to cure something incurable OR that there's nothing wrong with our autistic children. That they are just pleasantly different.
That having an autistic child is like taking some scenic and unexpected trip.
But isn't this equally damaging? It invalidates our very human need to grieve and to process the heavy emotions that go along with being the parent of an autistic child.
People tell you to focus on joy and progress.
And like 99% of the time, yes, absolutely, those are things we should be doing.
And at first it even seems easy enough. You're new to the game, you're just starting to learn what autism means for your child.
You're focused on accessing and understanding therapies. And you have so much hope for these endeavours.
But then, somewhere along this route, you settle into the permanence of your child's situation. You realize that this is the reality for them, that the world is and will continue to be a noisy, torturous place.
Your heart learns that you can't save your child from this thing that so encumbers them.
Most of what I share on social media is positive. I take thousands of photos to get a few "good" shots... the ones where her eyes appear most open and her mouth isn't hanging slack from low muscle tone.
I share the videos of her dancing and laughing, not the ones of her falling or thrashing, screaming and taking swings at anybody around her or smacking herself in the face.
I've written dozens of posts just like this... and have kept them to myself or deleted them all together once they're done.
But I'm quickly coming to the realization that that isn't fair to other autism parents -- moms who may also be hunkering down on the floor with their dysregulated child who's lost to the world most nights of the week -- feeling utterly alone in that battle.
I want my daughter to be perceived for the best of what she is.
I want the world to see her in those clear moments, in all her sass and silliness.
And really, those are the moments I want to focus on. But I also don't want other autism moms to feel like they're on an island by themselves.
Being the parent of an autistic child is exceedingly lonely.
Seeing your five-year-old behave with an emotional maturity most adults lack because of what he's been through having an autistic sibling...
Realizing your two-month-old is more expressive, engaged and regulated than your daughter was at two years...
Feeling a strange, but profound gratitude and indebtedness to them both because you know there will be a time when you're gone and the torch of care will pass to these brothers...
Simultaneously mourning that future for your boys, and praying this experience manifests in them as resilience rather than resentment...
This is not a place where others will readily join you.
When somebody says they love your girl's low raspy voice and they chuckle, entertained...
But you know that it means she's dysregulated, that she can't control the strength of her own diaphragm...
How you wish they could hear that beautiful little sing-song birdie voice that's really hers and comes out every so often when she's having a good day.
But very few people will meet you in that conversation, so you don't even try.
The things you don't feel you can talk about, the harm your child causes to herself or others, the ugliness of the battles with hygiene and stimming...
So you keep it to yourself and you learn to exist in that space alone, except for the few angels in your life who selflessly trudge through the depths of that shit with you.
My child is beautiful, her mind and her heart are fascinating and wondrous.
Her autism is rarely any of those things.
I rejoice in her triumphs just as I mourn her losses. I hurt for her, as she experiences pain from simply existing in this world.
Autism is no pleasant detour. It's agonizing and pervasive.
Every moment of life is tinged by it, every step of progress laced with what is lacking. Every decision made is limited by this inescapable presence.
It reaches your friendships, your career path, your marriage, your other children, the very core of your identity. But if there's one thing I could communicate to other autism parents, it would be this:
It's okay to grieve this thing that hurts your child. Just don't let yourself stay in that place for too long.
Find joy where there is light, fight tirelessly for progress. You owe yourself and your child nothing less.
But know you're not wrong to hurt when they hurt.
One of the most impactful things we can do to help our autistic children is to empathize with them, to join them where they are.
Each morning before my husband leaves for work, he asks our son the same question…
"What are we going to do today?"
"Good work and be nice to people!" Sam repeats with pride.
Occasionally, "and listen to mama" gets added on for good measure.
Do good work and be nice to people.
It’s simple, straightforward, yet a message need not be complex to be profound, right?
Last week, I traveled with Maggie for some movement therapy that we can’t get locally and that she has made great improvements with.
It’s worth it, every added stress or inconvenience, and we’re infinitely blessed with the opportunity and help we receive to make it happen.
Last week, I watched my girl workto make strides in areas of awareness, communication and coordination.
Rare, fleeting moments of connectivity grew a little more frequent, a little more stable.
But, last week, she simultaneously struggled in the sensory and self-regulatory departments.
There was a lot more hitting, kicking, head-butting, pinching, yelling... to try to make sense of the noise in her head or fill the space around her, perhaps.
Sleep was terrible, calm was elusive and the end of the week found us camped out on an airport floor working through a harsh sensory meltdown.
And in the midst of the emotional roller coaster that was last week, I found myself wondering how our little family motto could apply to Maggie as she grows.
Will she ever fully understand the concepts of kindness, generosity, work ethic, resilience?
Will she find things in life that fulfill her, challenge her, make her feel whole?
Trying once again to qualify such intuitive concepts into concrete terms.
Maggie already understands all of these things.
She is the most resilient of us all.
She doesgood, hard, meaningful work.
She pushes herself out of the limits of her comfort zone to learn and grow.
She works diligently, purposefully for things that come naturally to the rest of us.
She is determined.
She is fierce.
Yet, she also gives of her emotional self generously, with smiles, high fives, hugs and nose scrunches, even when it is frequently uncomfortable for her to do so.
And that’s when I realized the beauty of this phrase.
In its simplicity is flexibility.
Do good work and be nice to people.
It’s equally applicable to all of us.
It can mean different things at varying phases of life.
It can simplify the aspects of interaction that we make overly complicated in our own minds.
Photo Credit: Nicki Laureanti Photography
So, this is what I’m left with, to BOTH my children…
Do good work.
Seek work that challenges you, that grows your capacity, and trust you will rise to meet it.
Seek to optimize the quality of your work — there is no room for “good enough.” When you know better, do better.
Seek out work that affects positive change for others.
Seek to understand your limitations, and refuse to settle there — be honest with yourself about your weaknesses.
Be nice to people.
Offer compassion without a need for understanding.
Offer smiles prodigiously, especially to those whose faces seem to have not worn one in years.
Offer patience to those who do not afford you the same.
Offer understanding and a listening ear free of judgement, though this may be one of the most difficult tenets to manage.
Above all, be generous of your time, gifts and resources, without any expectation of reciprocity.
You will fail in all of these daily.
You will learn how to do them better.Photo Credit: Nicki Laureanti Photography
*Special thanks to Nicki Laureanti for your amazing captures of our family
In the days and weeks after Maggie’s regression, as the words “autism” and “on the spectrum” became part of our every day vocabulary, I spent a lot of time reworking my expectations.
I expected our priorities would need to shift.
I expected to worry for Maggie in all sorts of new ways.
I expected that we would get our heads wrapped around it all and things would, eventually, feel a little less raw.
But one thing I did not expect is how much I worry about Sam within this new context.Shirt - River Babe Threads
What does this mean for him?
How do we meet Maggie's needs without compromising his?
How do we find a balance for him.
We don’t want Sam to feel burdened by what Maggie goes through, but we also want to instill in him a sense of responsibility to help her navigate the world.
We try to find his balance... we fail in so many ways, but we try.
We make time separate for him.
We involve him in her therapy when he indicates interest, which he frequently does.
And we make damn sure he knows he’s a necessary part of her progress, that none of us could do this without him.Shirt & Joggers - River Babe Threads
A couple months ago he came home from school, where he and his friends had been talking about their "babies."
"My friend's baby is one year old,” Sam said. "How old is my baby?"
"Maggie is one-and-a-half," I told him.
"My friend's baby says hi, bye, mama, dada, and doggy! Why doesn’t my baby say these things anymore?"
"Because Maggie has a hard time with words,” I said. “She will say all those things again eventually.”
That was the first time Sam seemed to notice his sister’s difference.Maggie's shirt - River Babe Threads; Sam's beanie - NoxxAZ
Now, Sam has recently picked up translating Maggie's needs.
I’m not quite sure how to explain the pride I feel watching these one-sided conversations where he asks her preference and somehow magically knows what she wants even when I don’t.
Over the last couple of weeks Maggie has started saying the word "see."
It canmean see, or it can also mean this, shoe, sing, sissy, sit, swing...
As I made lunch yesterday, I held up half a dozen different food options for Maggie and she got frustrated, waving her hand and yelling "nah" or “dah” at each choice.
I held up a cup of mandarin oranges and she waved at it and yelled "see!"
I wrote it off as yet another denial and went to put the oranges back in the fridge.... meltdown commenced.
Sam came running over, "but Mom! She said 'yes,' see is yes sometimes!"
He was right.
The girl just wanted some oranges.
And it was a good opportunity for me to reinforce for Sam that whole I couldn’t do this without himthing.
Shortly after that, the two of them were having a really sweet moment.
Sam was playing peek-a-boo around the side of the couch with Maggie and she was totally locked in and giggling each time he popped out yelling, "I love you, Maggie!"
Sam suddenly stopped and looked at me...
"Mom," he began with a frown, "why doesn't Maggie say 'I love you too'?"
"Maggie tells us she loves us with her hugs," I told him, my chest tightening a little. "She'll say it in words someday."
"Maybe when she's four like me," he said and the smile returned to his face.
“I hope so, buddy,” I replied.
He is so good, this boy. So patient. So loving.
I hope he can see that she loves him so deeply in return, even if she can’t say it, that she saves the best smiles and giggles for him, that she watches every move he makes and looks to him to ground herself in uncertain situations.
I hope he can feelit from her, the way I can, even if we don’t hear it in words.
Finally, last night as I tucked Sam into bed, he said his prayers. He thanked God for all his favorite people and his home. And then this exchange happened...
“Thank you for my family,” he said. “The light that shines in the darkness.”
“Oh, Sam,” I said, absolutely stunned. “That’s beautiful. Our family really does shine...”
“No mom,” he interrupted. “I mean the light... right there on the ceiling. I like it when it’s on.”
He didn't quite understand what made me laugh so hard then.
This son of mine...
He’s so observant and patient and kind.
He is resilient, and this life with his “Sissy,” this is hisnormal and he isn't worried in the least what that means compared to anybody else.
Sometimes he wonders about his sister.
Sometimes he does worry about things that are too big for him.
Sometimes he is the comedian or interpreter that holds us all together.
And sometimes, he’s just a silly four-year-old who’s thankful for a ceiling light.
How did you know?
This has been the most common question I’ve gotten since opening up about Maggie’s recent autism diagnosis.
And I’m so grateful for it, because it shows a genuine interest and desire to understand.
Maggie’s relatively quick diagnosis can be attributed to some pretty glaring "red flags" and a vigilant pediatrician.
And research supports early intervention for these kiddos to improve long term outcomes and quality of life, so we don’t intend to waste any of that window of opportunity.
So, how did we know?
The short answer is that we didn't all at once. Our understanding of how Maggie does life has and continues to come slowly.
Maggie had a number of sensory and developmental issues through infancy, but always just barely passed that low bar of what was considered "normal" range.
We attributed her "stoic" demeanor to discomfort from constant issues with reflux, anemia, eczema, food allergies and aversions, and sleep disturbances.
Shortly after her first birthday, she quite suddenly stopped speaking, stopped making sounds other than “dadada,” stopped signing, withdrew from us and became increasingly fussy/upset.
Her efforts at walking ceased and continue to be precarious at times.
She went from being a poor sleeper to struggling to sleep at all.
She spent hours sitting in a corner repeatedly and systematically putting markers into a little zipper bag and pulling them out.
I could hardly bathe her.
She gagged on pretty much anything we tried to feed her.
And she would cry until she made herself physically ill.
Then came her 15-month well-check.
I had gotten there early to nurse her in the car before the onslaught of social interaction that was to come.
And had typed up a list of concerns so that I wouldn’t have to relay them over her crying.
Our pediatrician looked over this list first thing when we got into the exam room.
Then she looked Maggie in the eyes and calmly said, “Hi Magdalena.”
That was it. Maggie came undone. Total meltdown.
I bounced, shushed, patted, but she only screamed harder and began pulling at her own hair and hitting herself on the back of her head.
I tried to nurse her to help her calm, but she was so worked up that she gagged and milk came out her nose.
Our doctor quickly turned the lights down as I got Maggie cleaned up, put Frozen on the iPad, faced her in a corner in her stroller with all her safety items, the canopy pulled down around her, and held my breath till the screaming thankfully, quickly turned to whimpering and subsided.
And then our beautiful, God-sent pediatrician -- with whom we'd had an average patient/doctor relationship till that point -- leaned in and whispered across the room,
“Katie... your daughter is on the autism spectrum.”
Through tears (damn emotions), I whispered back, “I know.”
“But I’m in this with you,” she continued. “And we’re going to get to work.”
I was completely caught off guard. I had expected to have to advocate for help, to fight tooth and nail to get so much as an initial OT evaluation.
The fight became necessary in the months that followed, in other stages of this process.
But, in that moment, I found complete reassurance and validation.
After the appointment, the care coordinator slipped into the room to introduce herself and hand me a binder of information.
Before she left, she whispered to me, "I'm not going to tell you not to worry. You're going to worry. Our job is to worry with you."
I have a number of takeaways from this relatively new experience of parenting a special needs child, and since I feel like they could apply to just about anything that pushes our limits as parents, I'd like to end by sharing a few of them with all of you.
1. The fight is beyond worth it and progress is everything.
Whatever hurdle we are navigating for our children, the fight is worth it.
There is no final win or lose outcome here. The winning takes place over time, in each little piece of progress.
When I see Maggie take a minute to herself when she knows she needs it, we're winning.
When she uses the tools at her disposal to get the sensory input she craves, we're winning.
And when she joyfully and spontaneous opens her arms to hug her brother after a week of intensive Neuromovement work, we're totally freakin' winning.
2. I will never again tell a parent not to worry.
All parents worry.
As I compare parenting Maggie to parenting Sam, I would say that the worry of a special needs parent is, indeed, "greater"... in the way that I imagine a parent whose child is suffering a life-threatening illness experiences a worry with which I am, gratefully, unfamiliar.
There's a tangible, physical element of fear and uncertainty I have for Maggie that I do not carry so closely with me for Sam.
And yet, that in no way devalues the concerns and desires I do have for my son, nor those of any other parent for their own child.
There is no contest for whose worry is greatest. We are all operating at our own max capacity, with full heads and hearts of worry for our children, regardless of the particular details.
While I believe this sentiment usually comes from a desire to help, to console, telling a mom not to worry invalidates the very thing that consumes her.
3. I will also avoid “I understand."
As parents, we share a number of similar experiences: late nights, messy diaper changes, tantruming toddlers, and kids saying the darnedest things... in public... at the tops of their lungs.
And while no two parenting experiences are alike, it is incredibly tempting to think we understand the emotional journey of all other parents.
But parenthood is not an experience through which empathy alone is an adequate lens.
So, to all my fellow moms: if you share with me, if you let me in on whatever current worries wreak havoc on your mama hearts, I won't tell you not to worry, and I won't tell you that I understand, (unless we're talking about coffee, then you know I got you.)
But I will hear you.
I will root for you.
I will count the wins with you.
I will worry withyou...
as I will always worry for her.
Whenever we sit down to a meal, Sam asks us this question, word-for-word, same cadence and inflection, without fail.
"How was your day, can you tell me about it?"
I love that this interest in others is being cultivated by his wonderful teachers at school... and hopefully substantially reinforced at home. Beanie - NoxxAZ; Scarf - Moots Clothing; Shirt - Evergreen Goods; Joggers - River Babe Threads
At breakfast, when it seems that "nothing" has yet been accomplished, one is not exempt.
If you've ever been to dinner at our house, you've been required to answer. Even Maggie and the salt n' pepper shakers have to field the question. Beanie - NoxxAZ; Scarf - Moots Clothing; Shirt - Evergreen Goods; Joggers - River Babe Threads
Nobody is off the hook and Sam has a meticulous eye.
But one of the things I find most interesting is that he doesn't want to hear what went wrong -- or even right -- that day or about anybody else's actions outside our own. He wants straight-forward play-by-play.
What did you DO today?
And somewhere in the process of listing off actions objectively, self-judgement is removed and the day is suddenly so much more... simple, straightforward.
It becomes easier to realize the amount of purpose that went into the day and take note of the seemingly small accomplishments. Beanie - NoxxAZ; Scarf - Moots Clothing; Shirt - Evergreen Goods; Joggers - River Babe Threads
How was your day, can you tell me about it?
No matter the rest of the answer, the first line Sam requires is "I woke up..."
He won't let you continue on until you've said it.
Every day begins with one thing... waking up.
How simple and yet utterly profound to remember at the end of the day to be grateful for and acknowledge its beginning. Ah, through the eyes of a child...
Today, I woke up... It was 4:30. I kissed my husband as he left for a run and bible study, got the monitor on the babies, made my coffee, stretched, checked my email and now I'm writing.
So, friends... how was your day, can you tell me about it?
I would say I'm neither the least nor the most open person on social media.
I share snippets of our days on a regular basis, though I think I try to focus mostly on the positive. Nobody needs to see a video of my four-year-old throwing his tenth tantrum of the day, right?
It's not about keeping up appearances, it's about putting out into the world that which you wish to manifest. Positivity breeds positivity.
And while there are certainly things I choose not to share, I am relatively transparent when I feel an experience might be helpful or relatable to someone else. Especially with my fellow mamas.
Another's openness can help us feel a little less alone in this inherently isolating phase of life, and in this day and age, our village is at least partially formed online. But this one...
This new thing we've got going on... I'm not sure where to start. Do I put it out there at all?
Well, if I follow my own standards of relatability, then the answer is a definite yes. I believe it pays to be generously open with your life experiences, however intimidating that prospect may sometimes be. But how? Where? When?
To take the advice I constantly give my son, when you don't know where to start, just start where you are. So here's where we are...
Maggie is autistic. But how do I even write about this thing when I'm still trying to learn to navigate the in-person conversations?
How do I give it the gravity I feel it's due without my words weighing down others?
How do I speak honestly about the challenges involved without it coming across as asking for pity or sympathy?
I feel very strongly that this is not a situation that calls for pity, for this incredible little girl we've been blessed with is the absolute light of our world -- along with her big brother, whose patience and understanding humble us on a daily basis.
We might be raising Maggie, but this girl has grown us. We see in her a profound drive and determination to overcome the challenges she faces, a sense of purpose that most successful adults spend a lifetime trying to manufacture within themselves. Shirt by Honey Bee True Co
She is a wonder and a delight.
But there are valid challenges... challenges with shredding, chewing, biting, hitting, pinching, feeding, sleeping, bathing, communicating, leaving our house, inviting people into our house.
Challenges with balancing the other needs of our family with the particular needs of our daughter.
Challenges with outlook, understanding, perspective, guilt, grief. But the weight of these challenges generates an equally profound joy in triumph. And in the intersection of trial and success lies an opportunity, an open door for good conversation.
And maybe all I can do is try. So... I will try.
I will do my best to speak honestly and openly about both the challenges and the wins involved in our own particular journey -- with no presumption of anybody else's experience and at times when I feel I am able -- and open the door for whomever may want to enter and chat.