Tag: parenting

We’re Listening

Content note: this is a very emotional post and talks about some distressing things. 

I’m in several online autism-centered parent groups.
This is mainly so I can offer support and also learn – as I like learning about resources around to help advise families and friends.

Want to know a secret?
I hate it.

You know how sometimes people warm you to not read the comments?
It’s like that, but worse.

I understand that it’s venting, letting out some sort of pent-up rage into the void.

But – it’s very painful.

I see the posts about young children, and their parents calling them evil.

My blood pressure skyrockets and my chest hurts every time I have to read flyers shared that say “Talk About Curing Autism” or a fundraiser for the dreaded Autism Speaks. I worry as I read about how they use unsafe practices to “cure” the autism. The fad diets, the bleach and chelation, the intensive “quiet hands” ABA torture. A 40 hour work week is rough on most adults; why do it to a child?

I watch as an entire comment thread agrees together that autistic adults belong in group homes, that autistic children will never amount to anything, that autistic children should not be allowed to have an organ donation or that their deaths would “be a mercy.” I see people say that their child’s distress is “such an embarrassment” or that their child would be better off institutionalized and never allowed a voice.

I swallow my stress as I read post after post about how someone “can’t deal with this child anymore” and how “they just want to give them away.” As someone who grew up as a ward of the court, these comments sting too hard for me.

I cry because someone literally says they hate autism, and would rather have a dead child. Straight up posting “I would rather have a dead kid than this” and “I wish my kid was dead.”

Considering I just lost my autistic baby brother – don’t even try to pull that one on me.

Don’t you even dare.

 


I try to keep myself composed, because if I told people how I felt, I would definitely be banned. And even when I speak up politely, I often get shut down.

“You’re not really autistic.”

“You’re too high functioning.”

“You don’t know what it’s like!”

 

A few fun facts:

I am autistic.

I am not a functioning label.

I know exactly what it’s like, both inside and out.


 

I get told “you’ve never had a toy thrown at your head.”

I remember that I was given brain injury that has wreaked havoc on my nervous system and cognition. I have had many things thrown at my head, bitten, scratched, punched, and worse.
And yet, the worst abuse I have ever received was from neurotypicals. I have no anger nor bitterness toward a child who is struggling to comprehend and tame strong emotions.

I am lectured with “you don’t know what it’s like to worry about your child’s future.”

I remember crying alone hysterically the day my autistic brother went to preschool, because I was scared he would be bullied like I was.

I didn’t fear for me, because I figured I would die before I grew up anyway. Now that I’ve somehow survived, I am terrified.

I’m not sure what happens next. I don’t know where I will be living this time next year. I don’t know how I’m going to keep afloat. And you’ll find that most of us autistics are terrified, too.

I listen and read every comment.

“Autism is a disease. Autism is undignified. Autism is disgusting. We need to fight and destroy autism.”

I replace each instance of Autism with a name, whether it be my own or my loved ones. I would type it out, but I do not want to.

“My child is a disease. My child is undignified. My child is disgusting. We need to fight and destroy my child.”

How cruel does that sound?

I’m so used to being called worthless and broken. Our community hears this constantly in professional and parent circles.

 

Even in the conference I spoke at in April, I broke down crying as I listened to the more high-profile guests.

To them, we are a burden. We are missing pieces of ourselves and are too broken. We are deficits in society. Byproducts of genetic disease or environmental toxins, things I overheard constantly during the conference. Books on the counter about the “epidemic” and “problem children.”

All around me were puzzle pieces, anger, people all shouting about the horrible autism epidemic.

My meltdown I had when I got home had nothing to do with public speaking.

It had everything to do with the fact that I felt unwanted and unwelcome at an event that was all about my shared neurology. My friends, my brothers, my loved ones, my sweet fiancé – we are told so much that we are broken. We have no empathy or emotion. We are not wanted, not desired, not needed.

And people wonder why autistics have higher rates of trauma and mental illness?

I know autism is hard.

I am in that odd and awkward perspective, where I am the autistic person, love an autistic child, work with autistic people, and am trying to enter the professional word of special education.

I am not a stranger to the “negatives” of autism – not even the slightest. Yet, I don’t see a child with “deficits” or as a “side effect.”

I see a child who needs supports, love, acceptance, and encouragement. All people, regardless of ability, deserve kindness and to be respected as human beings.

But I can’t say that in these groups – and that’s the real shameful disgrace.

Autistic children, teens, adults – all of us are listening.

 

But are you listening to us?

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 brothers 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 amazing 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, and always facilitated the *best* floor meetings. I can tell you of people with schizophrenia who are the sweetest.

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 and intellectual disabilities that have addressed world governments and society’s stigma. I know people with cerebral palsy who are brilliant writers, witty souls, 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 play dates 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 one more 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.