An Open Letter to Parents and Caregivers

To the parents of kids with disabilities:
Take it easy.

Take a breath.

Be gentle on yourselves.

More importantly, be gentle on your kiddos.

Parenting is difficult, no matter how typical your child is (or isn’t).

It’s tough, especially when you have to worry about things that other parents don’t. Those late nights where no one can sleep, stressing over IEP meetings, the seven cups of coffee just to survive until noon, all the doctor appointments… it can feel like too much.

When you’re surrounded by so much negativity, it’s so easy to become overwhelmed and distressed. The world will list out all the things your kid will never do, and all the limitations that come with it. You’re hearing from every angle that disability is a horrid experience and people telling you how much less their lives are worth. You become convinced that your kid won’t ever have a normal life, and you have so many fears of what the future is going to hold. I feared this for my brother so much. I fear it for myself.

Take a breath.

Go easy.

Listen for a moment.

Let me introduce you to my community.

As an autistic adult who has several co-occuring disabilities, the disability community is a lifeline for me.

I know of some really great people in my community who do amazing things – with their disability, not in spite of it.

I can name several nonverbal autistic people who blog and educate.  I know some people from online support groups that are in group homes or under guardianship, because they can’t live alone safely. They’re the people who are often considered “most like your child” or “low functioning,” yet they all prove over and over that they are not machines you can classify. They are human beings with their own values, opinions, and autonomy- and deserve to be treated with respect. All of us autistics do.

(Reminder of my intense loathing of functioning labels here).

Some of them have published books. Some sing. A few knit, paint, or do other types of art. Many are kind and are the first to offer sympathy in hard times. All share their stories; each are unique and beautiful in their own right. They’ve made marvelous strides in positivity and accessibility, by pushing for acceptance, understanding, and respect.

I can tell you of people with physical and mental disabilities who are really great people. Comedians, lawyers, activists, teachers… the list goes on. I know people with feeding tubes who run businesses, people with diabetes who make some of the best nurses out there. I know fantastic people who rely on screen readers and get things done, graduating with honors. I can tell you about my college dorm Resident Advisor who was Deaf, ans always facilitated the *best* floor meetings. I can tell you of people with schizophrenia who are the sweetest and very clever. I know children fighting against conditions that are deadly and bleak, and the adults that those children become – brave, insightful, and possess the best humor. I know of people with Down syndrome that have addressed governments and society’s stigma. I know people with cerebral palsy who are amazing writers and wonderful friends. I know people with POTS who can make the absolute best cheesecake and desserts.

People with disabilities can still live wonderful and happy lives. Sometimes, you don’t even know they have a disability; it’s okay to be disabled. Disability is natural.

We don’t have to be famous or savants to be full of worth and loved. We don’t have to work high paying jobs or get a PhD in order for our voices to be heard, either. Your child’s worth is not determined by how much money they can make or how well they can pass. Striving for “normality” or passing as “normal” isn’t the goal for us. We know we’re not part of the ‘typical’ crowd – and that’s okay.

Don’t mourn for us. Celebrate and stand with us instead. We don’t want pity; we need acceptance and accessibility.

Right now, the world seems like a scary place. Your kid might not be a savant or amazingly talented at one or two skills. They might have difficulty with certain things that you don’t think they’ll ever be able to do – and that does happen sometimes. But not always.

One day though, your kid will grow up. Autistic kids tend to become autistic adults, a fact that you know often goes unnoticed. You may be terrified for their future, and that’s understandable. You may worry about future employment, future family life, what will happen to them.

That’s okay.

Take a breath.

Meet up with a therapist. Join a group that celebrates the positives, not just dwells on the negatives. Don’t fall into that trap of despair and negativity. Society tells us enough that we’re burdens; trust me, the last thing your kid needs is to hear it from you too. Your child is precious and loved, and they need you to be their safety net who will love them unconditionally.

Look after your mental health; that’s something all parents need to do, not just when you have a child with a disability. If you’re struggling, reach out. There’s no shame in asking for help. It’s better for you – and for your child. Your kid needs you, and they need safety and stability.

Let your kid take a breath.

They’re kids. Take them to playdates with other children. Find peer support groups. Help them find ways to adapt to a world that might not be accessible enough for them.

Let them play, laugh, and make mistakes. Let them be themselves. They’ll grow in their own way, at their own pace.

Advocate for your kid, love them unconditionally, and help them establish self-determination – even if at first it’s just choosing which clothes they want to wear that day.

And always, always presume competence. Your child will always understand more than you think.

And finally, take a deep breath.

It’s getting better.

The future is slowly getting brighter, thanks to the people with disabilities and allies who are breaking down barriers every single day. From the ADA to the IDEA and accessibility laws – the disability community is pushing through and tearing down the walls that have kept them out.

Your child is in good company.

And know that you’re not fighting alone. We’re on the front lines too, for both us and people with disabilities who will come after us.

Just like you, we’re not giving up any time soon either.

Hope Defeats Fear, Every Time

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[The words ‘Hope defeats fear, every time’ on a beautiful night sky background.]

It’s that time of the year again.

The semester begins to drag itself to an end, the weather chills and bites, and the Christmas music plays on a continuous rotation in every store.

For many, the Christmas season is a time of excitement and joy. Adults and children both delight in the trimming of the Christmas tree. The shimmering lights go up. The smell of sweet sugar cookies wafts across the kitchen.

For others, this month is hard.

Perhaps, this is the first Christmas without a loved one at their side. The chair is empty this year. It’s a bleak reminder that they will soon be facing a new year – without them.

Maybe, they are alone this Christmas. Alone in the streets. Alone in the hospital. Alone in their apartment. They may even be surrounded by many, but still have hearts and minds placed in solitary confinement – not by choice. Some may simply be too overwhelmed, and their mind is far too deep into the sensations that surround the holidays.

Possibly, the trauma resurfaces for them. Past Christmas memories are not warm and fuzzy. There isn’t hot chocolate, cheesy movies, or an Elf on the Shelf making mischief. Instead, screaming. Arguments, traumatic flashbacks, and the smell of something they would much rather forget. Strong emotions, but they are far stronger – and they don’t even know.

There’s even a chance that they don’t know why it’s so hard. Brains are a bit quirky that way. Sometimes there is no reason to feel sad, but human emotions rarely stand to rationality.

For a season of hope and joy, there’s not always enough to go around. In today’s climate, our worlds become dominated in fear.
The news gets bleaker, the days are colder in a plethora of ways, and there has to be a little light shining somewhere. A little ray of hope to shine into the fear. Something to make it more bearable.

A little hope won’t cure chronic depression or trauma; I’ve tried. I’ve begged. I’ve cried.
Little by little, though, hope shines through. A trembling torch in a swirling vortex.
It’s not a cure. A candle isn’t necessarily going to illuminate the entirety of the void.

For that brief moment, however, a corner is bright. That spark of hope is enough.

It reminds me of the candlelight vigil we held when I was in high school, a dark moment of loss. The autumn air was bitter, and the wind reveled in blowing out our candles – a bleak reminder of how each candle is extinguished so easily.
Most teenagers consider themselves invincible. I waited in fear, even as a child, expecting to be plunged in my own darkness at any time. The loss of close friends, family, and so much more catches up quickly. Candles begin to represent human lives, hope, or perhaps even something more. The problem is that they never last long enough.

But, when it comes to hope, there is a marvelous thing about them.

Something magical happens as someone else lights a candle.
Two candles together may create more light to illuminate the void, but the joy comes in more than merely the brightness.

As a candle is extinguished, its flame is rekindled when in contact with another still lit.

This is how a candlelight vigil begins. One small flame ignites another, and it spreads. From hand to hand, the warmth is gently passed on.

This is how a revolution begins. Just a spark.

In the midst of the heartbreak, the loneliness, the fear – hope is slowly passed from one hand to another’s. It may not brighten the entire universe we inhabit, but it makes a world of a difference for the person holding the candle.

This holiday season, in every season, pass the candlelight on.

Reach out to those in mourning. Be a companion to the lonely. Support those in recovery. Extend compassion and support to others who might be struggling.

Even the smallest spark of hope can be enough. A little hope goes a long way.

And over the past twenty years, I’ve made one singular observation that has not yet failed me:

Hope defeats fear, every time.

 

 

– Courtney