Confession: I love social media groups.
They be incredibly helpful when I need immediate advice from other parents who are in similar situations. Whether it’s a question about a strange rash, asking about the best potty-training method, or seeking an easy vegetarian dinner recipe, groups allow parents to lend a helping hand from anywhere in the world.
But for every pro in these groups, there are several cons. And some of these cons aren’t simply downsides or drawbacks. They can be downright dangerous.
Reportedly, in some social media groups aimed at parents of children with special needs, parents are urged to administer to their kids a potential cure for autism.
That cure? Bleach.
Yes, you read that correctly. The keep-out-of-children’s-reach chemical is touted as autism’s remedy.
Parents are advised to give their children bleach via mouth, enema, or bath. And if you think that’s bad, there’s more. Turpentine and the child’s own urine are other suggested cures. You don’t have to be a doctor to know this is terrible advice.
Autism is becoming an increasingly common diagnosis. In the United States, approximately one in every 59 children has an ASD (Autism Spectrum Disorder) diagnosis. It has no proven cause. And thus, it doesn’t have a cure.
Society makes parenting a child with special needs really damn difficult. Kids who are perceived as different, which is a synonym for bad, are often viewed as the product of poor parenting. This perception, paired with the day-to-day demands of raising a child with special needs, can prompt some parents to believe that their child needs to be cured. ASAP. By any means necessary.
Autism isn’t like strep throat or influenza. And the reality is, kids with special needs don’t need to be cured. They need to be accepted. Yet, for some parents, that’s a tough pill to swallow, so they hop online and attempt to fix their kids with pseudo-science prescribed on the Internet. Desperate times can tempt parents to take desperate measures.
Now I’m not throwing parents of children with special needs under the proverbial bus. As a special needs parent myself and a friend to many parents who have children with special needs, I empathize with parents’ desire to do whatever is necessary to help their child.
Parenting a child with special needs is incredibly challenging. The emotional, mental, and physical toll it takes on caregivers is ruthless.
Special needs parenting is financially demanding, too, between the therapy and doctor’s appointments, special equipment, and medications. Some parents can’t afford to work, while others can’t afford not to work. But then there’s the unique challenge of finding someone they can trust to care for their child.
Special needs can also take a toll on the parents’ relationships. For example, one study found that parents of children with autism have a 10% higher risk of divorcing than parents whose children do not have special needs.
The stakes are high, every day, and in every way. And like all parents, those who have children with special needs want their kids to be safe, healthy, and happy.
I am not going to tell other parents how to feel or react to the news of their children’s diagnoses. Parenting a kid with special needs is deeply personal. It’s also isolating, confusing, frustrating, and exhausting.
I want a cure for all sorts of diseases, just as much as the next person. I live with a relentless disease, type 1 diabetes. It’s categorized as a chronic, autoimmune, invisible illness that has no known cause or cure. But despite the science, I’ve been pitched some supposed miracles.
If I would just see a chiropractor and eat a no-carb diet, I wouldn’t be sick anymore. MLM company reps have offered me green shakes that look like grass clippings blended with mud and supplements supposedly containing bark from a rare tree in Brazil.
Maybe if I diffuse the right combination of essential oils, my pancreas would start working again? Have I considered drinking donor breast milk? Perhaps healing is simply mind over matter. I need to meditate multiple times, every day, for six months.
I have received equally as ridiculous suggestions for my child with Sensory Processing Disorder, ADHD, and speech delays. The best thing I can do, according to the Internet “experts,” is stop vaccinating, rub CBD oil on the child’s wrists three times a day, teach the child yoga, and make sure there’s absolutely no gluten, sugar, or dairy in my home.
My question is, why do so many make it their life goal to “cure” special needs? Why do we feel that there is something wrong with being different and that we must relentlessly seek the unobtainable?
As a person living with a chronic disease and a mom of a child with special needs, I’ve embraced acceptance. In fact, my position is that a diagnosis is a gift. Finding out what we had was half the battle. The second half of the battle is living day-to-day.
I refuse to live my life scouring the Internet for terrible advice that will certainly leave me disappointed. And I’m not going to even think about pulling some sort of dangerous shit and praying it cures us. No. JUST NO.
I fully understand a parent’s need to do something, to take some sort of action. This is particularly true when the child is suffering. When no one shows up to the child’s birthday party, when the child is humiliated in front of classmates, or when a child is treated unjustly, our collective hearts break.
In moments of desperation, we do Google searches and post questions to social media groups, hoping to find something that will help us, a glimmer of hope. We’re furiously digging in search of the proverbial needle in the haystack. The reality is, we may never stop waiting, yearning, and praying.
But what we cannot do is put on blinders and latch on to false hope. Especially not when that hope could permanently harm or kill a child.
Yes, contemplating the child’s future can be daunting. But as cliché as it sounds, parents need to take one day at a time by seeking support and relishing in the victories, no matter how small.
Sometimes, that’s all we can do. And for now, that has to be enough.