dear parent.
At the close of every year, like most, I find myself recounting the past and envisioning the future. What did last year bring? What will next year bring? 2020 brought… hell? Elliott (and Cal) lost school for 6 months, lost all her therapy, lost all her anything. Logical or not, I regularly feel like I’m failing as her mom. This year really rammed that thought down my subconscious throat as Elliott regressed substantially. In fact, she’s only just now showing glimmers of her pre-pandemic self. And those glimmers are because of school restarting, socialization, and one therapy - none of which came from me rather just our bank account and/or insurance.
The old saying goes “It takes a village to raise a child”; I say it takes a country to raise a child with special needs. We lost our country this year. It will all come back; I know this. I just don’t know when.
Along with the personal hardships everyone faced, and are likely still facing, to some extent in 2020; the state of our world is atrocious. Division is at its peak. The future state of the world my daughter will dwell within and how that will impact her, and everyone, keeps me up at night. And while I have zero influence over macro topics like the economy, climate change, and healthcare… I can hone in on something closer to home - being a parent.
Parenting style is like a snowflake. No two styles are the same. Parenting is personal and intimate and a faith. Parents stick to their style and they believe in their style as if their style were the only style in which one can correctly parent.
Offering feedback to someone’s parenting style can go one of two ways:
Way 1 - Parent B listens, absorbs and contemplates the feedback from Parent A. Parent B expresses gratitude then walks away contemplating ways to improve.
Way 2 - Parent B listens, absorbs and contemplates feedback from Parent A; Parent B then punches her in the boob (I can only assume it’s a Mom who is brazen enough. RESPECT.)… walks away, head held high, confident the response to feedback was appropriate.
Of course I have critiques about other parenting styles but unless a child is being harmed, I keep my mouth shut. It’s not my place. It’s not my snowflake. We’re all doing the best we can for our kids.
Only recently have I realized that pretty soon I’ll have a snowflake Venn diagram on my hands. One where parenting styles will inevitably intersect and if I don’t express feedback, guidance and perspective - my daughter’s image of herself will be altered. Negatively.
So, I’ve written a letter to any parent who will listen. Here’s to hoping I don’t get punched in the boob.
Dear Parent of a typically developing child -
Hi there. You don’t know me, but your choices impact me. Your choices impact my child and her self-worth. So I’d like you to get to know me a little, if you’re open to it?
My daughter didn’t start walking until she was 3.5 years old… frankly, she still doesn’t walk sometimes without coaxing and she recently turned 4.
She isn’t potty trained and likely won’t be for a couple years.
She doesn’t speak verbally, except for “mama” which is said in the most angelic, magical, miraculous voice anyone has ever heard. I dare you not to tear up when you hear it. I’m not sure if she’ll ever say more than “mama” so I drown myself in sign language hoping my eventual fluency allows me the ability to teach her. Teach her so that one day, maybe, she can express herself - her thoughts, feelings, ideas, beliefs - express herself in a way all humans deserve.
She gets sick a lot - as in had pneumonia twice last flu and RSV season. Twice. Both requiring hospital visits. We do respiratory treatments for her at least once a day, bump that to four+ times a day when it’s cold season. We have enough medical equipment to start a small hospital.
She won’t be CEO of a company nor will she be an astronaut.
She may attend a school that focuses on life skills rather than a public school that focuses on algebra. We don’t know yet. But it’s fine; I still haven’t used algebra - have you?
Now that you know a little about me, I’d like to share the little I know about you.
Your child likely learned to walk, without twice weekly physical therapy sessions or wearing two different types of leg/ankle braces.
Your child was potty trained with relative ease and you never worried they might grow a size bigger than the diapers manufactured for retail stores. Your child cheerily picked out superhero or princess underwear instead of you needing to contact all medical supply companies to find out the largest size diaper they sell.
You practiced “da-da” and “ba-ba” that seamlessly progressed to “daddy” and “baby” in a matter of months. With new vocab words spewing regularly from your child’s mouth in all the months and years following.
But, and most important of all, what I don’t know about you is how you will speak about my child to your child.
And that, that right there, is the most consuming thought I’ve ever held.
What will you say? How will you explain her struggling to walk? Or not yet using the potty? Or not speaking?
How you parent your child about my child impacts the world. Literally. We are creating the next generation of humanity and while my daughter may not be a CEO…yours might. Will s/he lead with an embracing heart of those who are differently-abled? Or will s/he use the “R” word freely, inconsiderate and ignorant of the impact?
I hope you will not teach your child to feel sorry for Elliott, as I certainly will not teach her to feel that about herself. There is nothing to be sorry about with regards to Down syndrome - rather, there is a recognition of Down syndrome. Understanding that the extra chromosome makes her extra unique. I hope you will ask your child, what makes him/her extra unique? Is it his red hair, her freckles, his uncanny ability to perform well at all sports or is it her extra chromosome? I hope you will teach your child to be helpful with Elliott, not out of pity but out of sheer comprehension that she will likely need more help and that your child can likely offer it. I hope you will teach your child to include Elliott - her not speaking is not an indication of not having fun, or not wanting to participate. I hope you will teach your child that every living thing is different, no two of anything are the same. This doesn’t make one style right and one style wrong - rather it allows us to view (and ideally embrace) those differences. To open our minds and hearts to new ways of communicating, interacting, loving, playing, expressing ourselves and recognizing the beauty in those differences. Isn’t that what life is really all about?
I hope you will teach your child to teach other children whose parents were not as mindful as you - not as mindful to leave our world better than we found it as we groom the next generation.
With all of my heart,
Aubrey (Proud parent to a child with Down syndrome)
I remember giving a presentation about GiGi’s Playhouse, Down syndrome achievement centers, at my office. Several Folks came up to talk to me afterwards with varying degrees of impact that they wanted to share. Mostly positive, “woke”, and driven to shift their mentalities on people with disabilities. One mom missed the mark and while I wish I didn’t remember this, I do. She has one son and said “I definitely want <name> to volunteer at GiGi’s, he needs to know how fortunate he is”…
…
…
I looked at her with muted shock and horror, as did the two other women in this conversation, and she looked back with blankness. Zero recognition that what she just said was terribly offensive and terribly misguided.
I was far too early in my ‘parent of a child who is differently-abled’ (I really need to come up with an acronym or something more concise) journey to respond appropriately - so I didn’t. I say my look of shock was “muted” because I was at work and didn’t want to be unprofessional - I should’ve been. It was a missed opportunity. That lady will likely not have another Aubrey in her life and her son… well, her son will be the type of human I fear the most - lacking compassion and awareness. The kind of human that doesn’t make our world a better place, but keeps it the same.
The same isn’t where I want to live, and certainly not where I want my daughter to live.
Maybe I should give her a copy of my letter.
Until the nexT21,
Aubrey
