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Helpless, Part 2

8 Bullshit-Free Ways You Can Help

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Welcome back. If you're just joining us, you may consider starting back at Part 1.

So my gr8ful friend Erica wants action steps on how she can help me, the parent of an Autistic child with a boatload of needs, and very little support. I'm still struggling with how to answer her question because I've been in this helpless hole for so long, it's so deep, I'm not sure how we'll ever get out.

Good news is, I'm not alone. There are thousands of parents just like me struggling to get anyone to understand what we are going through. May these Cre8tive Notes valid8te the feelings of parents everywhere, especially those with Autistic children. More importantly, may they cre8te more awareness & understanding for the gr8ful ones who love and want to help them.

So you wanna help a Parent of an Autistic child?

Here are 8 bullshit-free ways to start.

1 - Release us from your TYPICAL expectations.

We are not a typical family. We don't live in a typical way. Typical lifestyles, traditions, and activities don't typically work for us. 2020 living was all the practice & permission we needed to live life in our own way, on our own timeline to survive & thrive. We are never {like ever} going back to how it used to be. Shaming, guilting, or bullying us for not achieving your perceived expectations isn't helpful.

Me & Erica have boys the same age and there is zero Mama Drama between us. #enoughsaid

2 - Respect our boundaries.

They are there for a very good reason: SURVIVAL. We are not capable of over-extending ourselves or our children {to please others} because we're already incredulously over-extended. Parents like me are Protectors of Gr8 Peace, and we're honored to be the villain in other's stories because it means we're doing what's best for our family.

No, No Thank You, and that doesn't work for us - MEANS NO

Erica just gets it. Access to each others lives is a privilege. Over the years we've both given each other pep-talks on how to handle boundaries with work, family, and other parents.

info graphic showing dismissive listening vs. Empathetic listening

3 - Become a WAY better listener.

All humans feel unheard and misunderstood at times. Autistics {and the people who care for them} are blatantly being ignored even by humans who call themselves "loved ones". It's as if our needs, feelings, & thoughts simply don't matter.

If you want to be a HELPFUL part of our lives, you need to become a more empathetic listener, and you need to stop with the Toxic Positivity - it's hazardous to our mental & emotional health.

This takes practice. All of us need friendly reminders before entering a conversation.

You guessed it, Erica is gr8 at listening too. I always feel like I've talked way too much when we're together but it's fun and she makes me feel good about it. Don't be jealous, it's in her DNA. She should teach classes.

4 - ENOUGH ALREADY with the social media!?

If there is one topic me & Erica do NOT agree on, it's social media. I can't w8 to learn what she has to say about these notes.

Lots of HELPFUL SOCIAL MEDIA PSA's to unpack here, let me break it down ...

PSA #1: For the love of GOD! PLEASE STOP telling us to join FB groups

Not only are these groups putting targets on already vulnerable audiences, they are breeding grounds for trolls, bullies, cannibals, predators, and scammers. These are not safe spaces for burnt out parents. And hey, while we're here, let's please stop giving awards to people who make Facebook Groups. Why is this ceremony of social sacrifice being celebrated? 

You know what would be award-winning?  A safe & secure online community website not driven by advertisers, with accurate up-to-date & vetted content, and a privacy policy that doesn't sell our data to the highest bidder. *If you want to fund this project, I know a gal ;)

PSA #2: Respect Our Child's Privacy When we say/share/or put in-writing that we don't want you sharing photos or recording videos of our kids for your social media, WE MEANT IT. This rule applies to everyone - especially you Boomers in the back pretending not to hear. It's a privilege to be a part of someone's life, not a right.

PSA #3: No Disinformation Dumping Without Consent  We don't care that you just read about a new CURE for Autism. Keep it to yourself. And get consent before you share something you think is interesting or helpful online. We're incredibly overwhelmed and have zero patience for your "interesting article on vaccines".

You may be clueless about Autism but we AWARE & ALERT Parent Advocates. We subscribe to all things and set Google Alerts for all information that relates to our child's unique needs and diagnosis. If you read something you really think I need to know about and believe I haven't already seen it, ask me first.  

PSA #4: Social Media is NOT real life. So much of what you see online related to Autism families is heavily funded propaganda, misinformation, and cosplay. Families with influenced agendas, pretending to make it all work, while never disclosing the truth. Just because you see 1 family online that has an in-home support staff, or speech therapy, a sensory play room, or ability to travel with & without their autistic children... this is NOT the norm.

PSA #5: Improve Your Autism Awareness On Your Own Time It's not our job as already exhausted caregiving parents to educated you on your ignorance. If you want to HELP, gain a much deeper understanding of what we're up against. Listen and learn from Autistic Humans, not the heavily funded lies the ABA Monopoly wants you to believe.

PSA #6: STOP Supporting Harm Causing Organizations Supporting, donating, sharing, following, advertising, and {cringe} quoting Harm Causing Organizations like Autism Speaks. Here's a more complete list with reason's why.

START listening & learning from Actually Autistic Humans. These are a few of my favorites...

5 - Gentle Reminder: I'm not just a caregiver parent, I'm also a whole person with feelings.

The most annoying thing everyone does {because they're just trying to be nice} is ask, "How's Jake?" 

You don't know that I just got off a 72 hour shift of high-anxiety behaviors with zero breaks that included a rubber gloves & Clorox shit storm, and Peppa Pig Crying ON FULL VOLUME on the ipad over and over and over non-stop.

Just be prepared for a very sassy, "I'm gr8 thanks."

Even my Gynecologists asked about my child before me at my annual appointment, and I get it, it's because she cares, but Geez Louise is it deeply humbling in the most thankless way. We love our kids and are committed to caring for their needs for a lifetime - and - we're also our own person beyond that role as a caregiver parent.

Ask me how I'm doing first, please & thank you.

Me & Erica have limitless amounts of topics to catch-up on when we connect. I'm not saying our kids don't come up, I'm saying we put ourselves first - always.

6 - Nourish Us

Sacrificing our own needs to care for our children (and get to work at our other full time jobs) is a fact of life FOR ALL PARENTS. A surprise cup of soup or breakfast sandwich would never be turned away. Who doesn't love UberEats gift cards?

UberEats is the best thing to happen to parents since childcare existed back in 2019.

But it's not just food you can feed us with...

Nourish us with understanding Invite us over and tell us not to bring anything {unless we want to} because you understand how difficult it is for us, how we have to move mountains just to get out of the house for a few hours and we will most likely be returning to a disaster for the small privilege of personal freedom. A little understanding goes a long way.

Feed us with encouragement We spend our day encouraging our kids every step. We need cheerleaders sometimes too. Being a parent of a disabled child is a life full of name-calling, shaming & judgement. We need to hear we're doing a gr8 job, because every day we feel like we can't do enough.

7 - Be willing to meet us where we're at

Many of us are 24/7 caregiver parents of children with profound needs who will never "grow out of them". It's a life of service. We get a break when our child is in school. That's it. Most of us work full time jobs during those "break" hours. You want our time & attention? Consider of our lifestyle, emotional tolerance, and cognitive bandwidth. If you ask me to hang out and I say, "I'm available school hours", I'm not being difficult, I'm just being honest. If I say, "no thank you" to your 8pm invite, it's not personal, that's bedtime. If I'm not inviting you over, it's because we can't handle, nor do we want guests.

Erica is like me, on the Mom Shift. I appreciate our meetups & calls during school hours. I also appreciate that she knows I go to bed early. Most of all, I appreciate how much she understands how sometimes even responding to a text messages can be too much. It might take me a few days, but I'll get to it.

8 - Ask Questions & Speak Up

The path to a better more inclusive world starts with you. We need your help to amplify Autistic voices and make positive change for our families. An Autistic seat at every table starts at YOUR TABLE.

Erica is always asking gr8 questions that shows me she wants to understand. I appreciate that she never gets offended by the answers or judges me for my perspective. She speaks up for me & other families who aren't in the room in every part of her day at work, on social media, and out in the community.

And she's still waiting for her action steps.

I hope this post helps her realize that she is already being such a HUGE help to me.

What will you start (or stop) doing to be more helpful to the parent of an Autistic child in your life?

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Brand Photography by: YCP STUDIO

Hi. I'm {sb}, owner of {sb}Cre8tive, an American dreamer entrepreneur, and a passionate Autism advocate. These are my Cre8tive Notes, an unfiltered account of life's Cre8tive Journey.

Join me in exploring the realms of cre8tivity, self-employment, and Autism parenting—a space where truths are unveiled, experiences are shared, and lessons are learned.

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