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Helpless, Part 1: 8 Truths You Need to Know from a Parent of an Autistic Child

{sb}

Whenever I am blessed with an opportunity to see my gr8ful friend Erica, she always, without fail, asks, "How can I help you?"


It blows my mind. She herself is an only parent, having lost her husband to cancer, with a demanding full-time job that requires frequent travel, plus a side hustle the size of most people's dream careers. How could she possibly help me? How does she even have the energy, time, or ability?


Hi! If you're new here, I'm {sb}, one of the 1 in every 36 parents who is raising an autistic child in America. Despite there being so many of us, we live in voluntary isolation, doing our best to survive each day with joy and love, and with any luck, progress and hope.


You know us, but you know nothing about us. You have no idea how heavy the load is, how deeply we struggle, or how we live each day haunted by the paralyzing fear of what will happen to our children when we can no longer care, advocate, and fight for them.


Erica's question, "How can I help?" is a gr8 question many parents like me struggle to answer. The answer is never that simple. We've gone without help for so long, I'm not sure where or how to even start.


*And that's the story of how Erica inspired me to start writing Cre8tive Notes.

 

Let's start by addressing everyone's first question:


If I'm so helpless,

Why don't I ask for help?



For starters, I'm a GenX. The “It’s 10 o’clock, do you know where your children are?” generation. You may also remember us as the “Thirsty? Get a drink from the hose.” generation. Gen X was raised to figure shit out on our own. To never {like ever} be a burden to ANYONE unless you were missing a limb or the house was on fire, and even then, that was questionable. Asking for help was something we were never taught or encouraged to do.


I’m gr8ful for the hyper-independent Gen X cards I’ve been dealt because they have served me very well for this lifetime. These forced high-function muscles help me stay in the game of parenting a child with disabilities in a world that's not designed for his survival. As I evolve as a parent, I’m re-learning that asking for help is a sign of strength, not weakness. But...


Society says me & my disabled child are not worthy of help. I’ve been advocating for my son since he received his diagnosis at 18 months old. Even with an early diagnosis, he sits on an erroneous waiver waitlist {year after year} for the services he needs right now. He will likely age out of eligibility before he ever gets a chance at access to the appropriate services he needs for a healthy, independent life.


info graphic about awareness


When I advocate for the help my child needs, the people who are in {paid for with your tax dollars} positions to provide access to help tell me I’m:


  • "Privileged"

  • "Ableist"

  • "Ungrateful"

And my personal fav,

  • "Too Put Together"


for my profoundly disabled child to receive the help or services he needs.


If I mention my child’s American Citizen Rights, I’m a Karen.If I mention my tax dollars, I’m an Extremist. {Really?}If I mention my own mental health, I’m a dehydrated, ungrateful ableist.And if I prioritize my self-care, show up to the appointment prepared with notes and clean hair, I’m shamed for being “too put together.”


Why is there so much name-calling in realms specifically designed to provide help and services? Why are we teaching our kids to ask for help when this is the response they’re going to get?


IMPORTANT NOTE: I would not be doing my job as an advocate if I didn’t mention... Even those who are deemed worthy of help by society or the state are NOT getting the help they need. Makes you wonder, where are all the tax dollars going?


Autism doesn't discriminate, help for Autistics shouldn't either.



screen shot of a tweet

Lastly, the "help" that's out there ISN'T HELPFUL, it's harmful. The majority of what’s considered "help" in education, social services, government laws, and healthcare is 100% NOT HELPFUL for Autistic humans or the parents who care for them.


Much of the "help" was developed in the past for other types of disabilities, and Autism got roped in with no consideration for what the real needs are. Worse, this "help" was developed by non-Autistic humans who are in it for the money & power → helping Autistic humans thrive isn't on their agenda.


Parents like me are not willing to subject our children and families to "help" that forces us to give up our rights, our safety, or causes lifelong pain, suffering, and unrepairable trauma.



We're cautiously & optimistically winging it. Doing our best to keep up with needs that are more than parents alone can sustain.



Why is it like this?


Autism is an invisible disability.

If non-disabled people don’t "see it," it doesn’t exist. If my child were in a wheelchair, no one would question why he needs assistance in the bathroom. Yet here we are.

Infographic about invisible disablities



Autism Spectrum Color Chart

To make matters worse, Autism’s vast & unique differences are defined by a SPECTRUM, which for a neurotypical / allistic mind looks like spaghetti thrown on a wall.


Now add in what a horrible job Hollywood is doing depicting Autism in everyday life. No Autistic person is like The Good Doctor, EVER.


Many Autistics have profound disabilities that require support and modifications for every aspect of their lives. They will never have the opportunity to live on their own, attend higher education, or have a job. Even though many would be exceptionally purposeful in the workforce if they had the right help, support, and modifications.



REALITY: The help we need does not exist. {yet}


When I shared a draft of these notes with Erica, she did what all my cre8tive friends do, and she provided me with feedback I didn’t want to hear. Touché!


She said it wasn’t good enough, and she wanted at least 3 action steps on how she could help me. If I had ONE WISH for help, what would that be?


All I kept coming back to was awareness. Maybe if other parents, colleagues, and community leaders heard the truth, took the time to understand more about the types of help we need and why, maybe we might not be so helpless.


So here goes nothing!

 



8 Truths You Need to Know

From a Parent of an Autistic Child


We need access to Autism-Appropriate support services

Access for ALL Autism families, especially those with children under the age of 18. I’m talking real access. NOT: “Here’s the number to DDS, apply for a grant.” Unrestricted access to non-abusive and Autism-approved, appropriate services provided by vetted, trained, and certified professionals.

A meme about advocating

Appropriate Support Services

include but are not limited to:

  • Speech Therapy

  • Assistive Communication/Technology Assistance

  • Occupational Therapy

  • Home Safety Modification Assistance

  • Sensory Therapies

  • Physical Therapy

  • Mental & Behavioral Health Services

  • Community Support Assistance


And yes,

  • Respite Care: Because every parent is worthy & deserving of a break. We can't ask just anyone to watch our kids. They have unique needs that require trained & experienced individuals..



Our kids are on an erroneous AUTISM WAIVER WAITLIST to nowhere Connecticut is making billions off legalized weed & gambling, while thousands of American citizen children with an Autism diagnosis sit on an erroneous waitlist for services for life—BECAUSE THERE'S NO MONEY??? You will never convince me that non-citizen children's healthcare needs come before the needs of American citizen children with health insurance & tax-paying parents.




We need iPads, on-repeat

They don't have to be new iPads. They just need to work and not have a cracked screen. Our kids literally can't live without them. iPads are how they communicate and get through the day. Unfortunately, a case that helps protect iPads from the challenges of Autism doesn’t exist yet either.


If you or your business are getting rid of old iPads or would like to donate, please email me. I will ensure they get to Autism families who need them.


Also, if anyone knows someone at OtterBox, I have A LOT of suggestions for an Autism-proof case. Teen8do would be happy to assist their Quality Assurance team with product & safety testing.



We need Doctors who treat Autistic Humans

BEYOND THE DIAGNOSIS, we need doctors who understand the developmental and health commonalities of Autism. While Autism may be a spectrum of different neurological identifiers, the health issues among Autistic humans are something they all have in common. Sensory, stomach, and skin issues are very common with Autism, yet every pediatrician treats them like a mystery..

Info graphic about common conditions

WE NEED SLEEP! Sleep disorders alone are paralyzing Autism families, and all doctors can say is, "There's nothing we can do."


We need doctors who specialize in treating these non-typical patients with typical symptoms who may not be able to articulate how they are feeling. And, if I'm not asking too much, it would be gr8 if these doctors took appointments after-school hours, evenings, and weekends.


The last time I asked my pediatrician for a referral to a doctor who specializes in Autism Adolescence, she laughed in my face and said, "Good luck." She's just being honest: in the entire YALE MEDICINE DIRECTORY, there's not one.



We also need Autism Health Insurance Billing Codes - STAT!

Non-typical kids don't go to the doctor or the dentist in typical ways. Our kids require shorter & more frequent visits to build trust, communication, & connection so the doctors and dentists can do their jobs. The alternative is sedating our kids in a hospital twice a year, and it's no good for anyone—not to mention FAR MORE COSTLY. Currently, some insurance companies will allow for one extra "behavioral" visit. I'm saying we need 6-12.



We need Accessible Bathrooms

a screen shot of a tweet about accessible bathrooms

Especially in special education schools. DUH!


Our children are stripped of their dignity before they even get a chance to understand what's happening in their bodies. Ask any parent of a disabled child, and they will tell you NIGHTMARE stories of how their child was "assisted" in the bathroom and what that bathroom looked like—in a public building—that is supposed to be ADA compliant.


It's shameful that in 2024, parents are being arrested for advocating for the basic bathroom rights of their child. You should know, Autism parents will continue to advocate from jail, even from the grave. Nothing, not even arrest, will stop us.


We also need higher standards for community bathrooms. Putting lattice work around a couple of porta johns does not make our beautiful Branford Town Green more accessible for ANYONE—from families with young children to the elderly and everyone able-bodied or not in-between. Change starts right here in our hometowns.



Video Cameras = Accountability

We need video cameras in ALL special education schools. Especially those schools that have been found in violation by authorities for abuse, mistreatment, and neglect. We need cameras in every classroom, therapy cubicle, bathroom, and outdoor spaces too.


Child abuse in special education schools is rampant, and no one is being held accountable.

40% of our kids are non-verbal and can't tell us with words. Teachers' unions, school officials, and the lawyers on both sides are using their inability to speak to their advantage to protect the abusers. Worse, they are fully invested in bullying and threatening parents who speak up. Parents can't so much as write a Google review to warn other parents without the threat of lawsuits or having our children taken away.


a graphic warning parents

The Special Education System is the most corrupt organized crime happening right out in the open for all to see.


The lies, the cover-ups, the backdoor deals, and the intimidation of paraprofessionals & witnesses. Ask any parent with a child in a special education school, and they will share terrifying accounts that include a brutal battle to save their child from repeated abuse, with a painful loss of thousands of dollars spent on lawyers who were "unable" to help. The lawyers that pop up first in your Google search are never going to help your child. They are ALL in on it together.


Video Cameras = Accountability.

If schools have nothing to hide, they shouldn't be fighting so hard to keep the cameras out. No one but the authorities needs to see what these cameras capture. Schools are using their own misinterpretation of FERPA laws against the families it was designed to protect.


We have a human rights scandal in education.

Our children have been waiting years for legislative protection.



ABA Therapy is abuse

We need your help to OUTLAW ABA: abusive therapy, restraints, and traumatic isolations in our schools and therapy facilities. The ABA community is made up of non-Autistic individuals who are making BILLIONS, and currently, their voice is louder. Yet, ask any actually Autistic person, and they will share with you in full detail how ABA destroyed their lives beyond repair.


ABA professionals will try to tell you that "their ABA" is different and not abusive. They'll rebrand their websites with calming colors, diverse stock photography, and tell you it's "what your child needs." It's still abuse.


Allowing ABA professionals to repeatedly say their therapy is "different" or "not abuse" is no different than allowing a serial rapist to say their actions aren't violating, that the child needs to be traumatized to learn how to be compliant and "available for learning." ABA is also compared to Gay Conversion Therapy. It's forcing the Autistic person to be something they are not in a painful and dehumanizing way.


GUESS WHAT!? Physical restraints are also ABUSE.

Traumatic isolations & padded rooms? Yup, still ABUSE. #removetheroom


Institutional abuse is thriving in our schools under the guise of reasonable force. Children are being conditioned with reactive violence to exert a position of submissive behavior and control.


Autistic children are being viciously abused in broad daylight at school every day, and nobody cares. Our children are being taken advantage of in front of adults who should be protecting them. Kids with disabilities are being intentionally pushed beyond their ability to cope while everyone sits back and collects a paycheck (funded with your tax dollars).


a screenshot of a tweet

THE SOLUTION IS COMMUNICATION NOT COMPLIANCE 40% of Autistic children are non-verbal. The focus needs to be on speech therapy, ASL, assistive communication devices, compassion, and understanding. Not cruel and unusual punishment, abuse, restraints, and isolation that leave a lifetime of unrepairable damage.





There needs to be an Autistic Seat at every table.

It's time for everyone, including our government, education, and healthcare systems, to start listening to actual Autistic individuals. Not the heavily funded lobbyists for agenda-based abusers and their organizations committed to torturing or "curing" Autistics.


It starts with YOU! Pull up a chair and cre8te an Autistic seat where you live, where you play, where you work, where you vote. Everywhere there is a table, Autism needs to be recognized, represented, and respected.


Are you feeling more aware?


As you might imagine, Erica is still waiting for her action steps. If you're like Erica, and you'd like to learn more tangible ways you can help, stay tuned for Part 2.



sb meditating on a bench with sunglasses on
Brand Photography by: YCP STUDIO

Hi, I’m {sb}, owner of {sb}Cre8tive Branding & Content Cre8tion, an American 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.


For inquiries, please email: sb@sbcre8tive.com


2 Comments


Megan McIvor
Megan McIvor
May 12, 2024

This is a wonderful blog SB ❤️

Like

Lisa Davenport
Lisa Davenport
May 10, 2024

I love you ... and I'm so proud of you ... xox


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