Katie Feavel

October 02, 2017

0 comments

Posted in autism|Maggie


i will worry with you

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.

DSC_0771-2

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 her in her stroller (her safe zone,) with her ice water and Lullavibe and her favorite little doll to grasp and that weird, but oh-so-clutch, silicon banana toothbrush.

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.

DSC_0940-2

When she uses the tools at her disposal to get the sensory input she craves, we're winning.

DSC_0947

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.

DSC_0868

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.

“Don’t worry.”

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.

DSC_0861