Parents of developmentally disabled children suffer from a very difficult form of depression called chronic grief. The loss we have suffered cannot be relieved by the normal grieving process.
Why? Because it is ongoing; there is no closure. We may feel good most days, but we suffer constant triggers - IEP meetings that detail our child's limitations, seizure activity, judgment in public, isolation from family and friends, social media posts featuring children achieving milestones - and with each trigger, our loss is experienced over and over again as if it's new.
According to psychiatrists who specialize in chronic grief, the root cause is the gap between our reality and the expectations we had for our children and our experience as parents. We imagined something very different from what we've received. Our reality seems cruel and unfair for our children and for us.
This loss is even harder to accept because of the stigmas surrounding our ability to allow ourselves to feel the loss we've suffered as parents. We're told we must be grateful for what we have, so to grieve our loss feels selfish.
Most of my friends think I'm a pretty ballsy broad, but the truth is, I just have a wider comfort zone than most. I struggle with feelings of insecurity and self-doubt just like everybody else.
Today I did something bold I've never done before: colored my hair hot pink. In the age of mermaid hair, that probably doesn't seem like a big deal. However, as a GenXer rapidly approaching AARP eligibility, it was a huge step outside my comfort zone.
But it shouldn't have ever been that way.
When I was 13, I was obsessed with Michael Jackson. Thriller was, hands down, my favorite cassette tape of all time (still one of my favorites) and I spent long hours in my room memorizing every word and attempting all of MJ's famous dance moves.
Man, did I love his style. I loved it so much, I decided to copy it.
I convinced my mom to let me get the curliest perm available to a white kid living in rural Kansas, and confidently instructed my mom's stylist to cut it shorter on the sides like Michael's pompadour mullet. I was so excited to go to school and show off my new hairdo.
You all know how this story goes - it's a rite of passage most children experience at some point. Nobody thought I was cool. They made fun of me. Even the boy that I liked. Especially the boy that I liked.
That's when I learned a life lesson I've carried with me always. Everyone knows this one, too. We've all seen the meme:
'Shortly after the Great Hair Scandal of 83, a similar fashion incident occurred that involved bright, striped socks worn with matching culottes that I loved but nobody else did.
From that day forward, I vowed to temper my full personality. I had learned that once most people got to know me, they wouldn't like me.
Now, that doesn't mean I became a wallflower. Not at all. Instead, I found an 80s loophole that went something like this: Different is okay, as long as you're still sexy. It was the Madonna litmus test.
And to this day, that has been my personal style. Different, but not so different that boys didn't like me.
Regardless of your political opinion of the Brett Kavanaugh confirmation, if you attended high school in the 1980s, the stories that emerged from the hearing probably made you cringe. Boomers and millennials were stunned and offended, but we GenXers weren't. We went to those same parties every single weekend.
I've always been proud of the fact that as a GenX woman, I could choose any career I wanted, earn my own money, choose to marry and/or have children or not, and do a whole bunch of things my mother's generation couldn't do, but hoped their daughters would. And for the most part, we have.
But many of us were, and still are, caught somewhere in the middle between equality and compromising who we really are so the boys will like us. If we're not the sexy girl, we're the good wife.
It may seem like our millennial daughters and younger sisters have it better, but I'm not so sure. They heroically launched the #metoo movement, but they seem just as insecure and almost as willing to objectify themselves as we did.
I spend a lot of time doing everything I can to help Tosh become the best he can be, but for the past 18 months or so, I've spent more time focusing on myself than I ever have in my life. Not superficial self-improvement, but deep soul diving work. Ugly, Pandora's Box kind of stuff.
It's been the hardest but most rewarding work I've ever done. One lesson I've come to accept within the last couple of months is that I wish I hadn't felt embarrassed about my Michael Jackson hairdo. For almost two years I've wanted to color my hair something cool, like lavender or teal or magenta, but those memories of being laughed at in the lunch line always held me back.
That's why I took the plunge and colored my hair a color that boys my age don't generally like. (Although, a millennial woman I discussed this with today disagreed - "My mom does lots of things style-wise that I'm not brave enough to do, and she pulls plenty of dick," she said.)
I absolutely love my hair. And for the first time in 35 years, I don't give a fuck whether any boys do, too. Or any girls, for that matter. Some will. Some won't. The important thing here is that I no longer care.
As an autism parent, I'm 100% on board with accepting Tosh exactly the way he is. I want him to be able to pass freely through society and progress academically so he has options in life. But when it comes to hand flapping and playing with age inappropriate toys and everything that makes him different from neurotypicals, I couldn't care less.
Anybody who is lucky enough to know him and love him will do so because of who he truly is, not who he thinks others want him to be.
From this day forward, I vow to apply those same standards of acceptance to myself, too.
I think Tosh might be a shaman.
No, seriously. Hear me out. Your kid might be one, too.
Even if you aren't into that kind of thing, you’ll look at their autism “symptoms” a little differently.
While flying home from our Labor Day vacay, I read a pretty convincing article in Autism Digest written by a shaman who is also autistic. Gonzalo Benard, a Tibetan Bonpo Shaman also known by his shaman name Gon.Sal, was nonverbal until age seven and even as an adult, rarely speaks.
If you’re unfamiliar with shamans, they were prevalent in many ancient tribal cultures around the world, including the native cultures of North America. They’re kind of a mix between a doctor and a priest, using both spiritual and medicinal healing. The internet and social media, along with a renewed interest in metaphysical phenomena and natural health, have raised the profiles of modern day shamans.
Some, like Shaman Durek (who I follow on Instagram and who did a short, remote reading on Tosh) are receiving mainstream media coverage.
Gon.Sal wrote that in many ancient cultures, children with autism were considered sacred and many became shamans. He explained that many of autism’s symptoms, which are considered problematic issues that must be addressed, are qualities that shamans, monks and other holy leaders use to practice spiritual rituals and heal people.
Take, for example, autism’s nonverbal symptom. Think of all the world religions that require their holy leaders to take vows of silence to strengthen their ability to communicate with their god. When you find your silence, you find your answers, he said. He added that speaking creates vibrations that drain energy from the speaker, and for autistic people, who have more sensitive nervous systems, that energy is instead needed to recharge their bodies in today’s over stimulating world.
Also consider how many autistic people hum and rock back and forth. Now think about all the religions that use rocking, humming and chanting to evoke a spiritual connection. Almost all of them, right? Gon.Sal said rocking, humming and even stimming are tools holy leaders use to calm, focus and connect to spirit.
Autistic people are also highly empathic. I know Tosh certainly is. He’s extremely sensitive to the moods and emotions of people around him, and he becomes concerned or upset if anyone is sad, hurt or angry. He becomes distressed if someone exhibits road rage while he’s in the car, and he hates political debate.
And he doesn't just exhibit empathy. Tosh wants to make it all better. He's a hugger (when he initiates it). He hugs people he loves and those who are upset. He also rubs, kisses and blows on any and all ouchies without prompting.
This ability to feel others in a deeper way is a gift shamans and other holy leaders possess. It provides a better way to heal and mindfully spread peace.
Gon.Sal also explained that this empathy also prevents autistic people from understanding today’s social structure, which is based on emotions, not empathy or even logic. That’s why our kids don’t understand emotional concepts like jealousy, greed, envy or justice.
For example, to someone with autism (and, I suspect, many parents reading this blog), why bother with jealousy? If not having something affects you so much, why not focus on improving yourself so you can have or feel the same? I must admit, that sure resonates with me. In fact, it's the underlying philosophy of Autism Oasis.
Our modern society is structured by neurotypical people who impose social behaviors connected to their emotions, rather than the pursuit of a higher consciousness. Neurotypical people are driven by ego. Autistic people are driven by spiritual alignment.
Perhaps the rate of autism is increasing because the world needs to change. After all, our world’s problems – war, poverty, climate change and the demise of our natural system – is all the result of ego-driven policies that use emotional manipulation to convince the masses to support destructive agendas that aren't in their best interests.
Perhaps the neurotypical population needs to start listening to autistic people, rather than change them. Perhaps our autistic children are here to open our eyes to our ego-driven follies, and to ultimately heal the world?
It’s pretty heady stuff, isn’t it? Very mystic and supernatural; and yet, there’s a lot of logical reasoning to support it.
What do you think? Might your child be a shaman? Might they be inter-dimensional protesters and healers, sent here to save humanity from ourselves? Please share your thoughts.
Tosh's dad and I separated more than three years ago. We've come a long way as friends and sometimes we still have our differences.
But when it comes to Tosh, we've always worked as a team.
According to the CDC National Center for Health Statistics, between 1970 and 1980 the number of divorces per year increased from 500,000 to almost 1,250,000. It averaged that number until the mid-1990s, and has since steadily fallen to a current rate of about 800,000.
Gen X was the first generation of children to experience widespread divorce rates, and the traumas we experienced still haunt us. I think that's why so many of us are good co-parents. We know first hand how divorce can affect children, and we are doing our best to use our experience to reduce the trauma for our own children.
Tosh's dad and I have stumbled along the way, but there are three key things we have committed to doing in order to maintain a healthy co-parenting relationship.
1. We respect each other's strengths.
I'm a Type A personality, which means I'm good at making money, filling out paperwork and creating the consistent environment kids need. Tosh's dad is a personal trainer and high school basketball coach, and he's done an amazing job improving Tosh's gross motor skills. We're both into natural health and nutrition, but he's more disciplined when it comes to feeding Tosh a clean diet. He'll roast the chicken and steam the veggies when he's tired; I rely too much on my Grubhub app. He also does a good job with the manly stuff - he's the one who potty trained Tosh, taught him to get his hair cut at a barber and has helped him overcome his fear of dogs and cats.
At times we have focused too much on the other's weaknesses. But we always come around to appreciating the other person's strengths. The positive attitude is not only good for Tosh, it's good for the whole family.
2. We don't use Tosh as a weapon.
There have been times we've both attempted to disrupt the other person's custody schedule. We're only human, and humans get mad, get hurt, and lash out. But we've learned to call each other on our bullshit, and after a reasonable cooling off period, we have always realized the other person is right.
This is where the perspective of a child of divorce comes in handy. Kids don't care if one parent inconvenienced the other or the child support is late. All they know is they don't see their Mom or Dad when they want to. And being kids, they assume Mom or Dad doesn't want to see them. Tosh has enough challenges in life. Feeling unloved by a parent is a trauma he will never experience because we rise above our own egos to consider his feelings.
3. We spend time together as a family.
I usually throw Tosh a big birthday party, and include his Dad, Grandma and other relatives from Dad's side of the family each year. We have also both attended family get togethers on his Dad's side (my family doesn't live nearby). With the exception of this last Christmas, Dad also either spends the night or comes over early to be with Tosh when he wakes up and opens his presents.
Recently, we've started eating out together as a family every other week or so. I got this idea from a divorced friend who does the same thing for her son, who is roughly the same age as Tosh. She posted about it in her blog and emphasized that even though she and her ex are no longer married, to her son, they are still his family.
Just because the marriage failed doesn't mean the family has to fail, too. Because look at that happy face! He's worth the effort.
I just returned home from a dream vacation to Scotland, my first trip beyond North America. It was so empowering to travel such a great distance. To say I’ve expanded my horizons is an understatement.
Little did I know that expansion would continue when I returned home to find a river running through my garage. A pipe burst in a wall while I was gone, and I wrote most of this from a coffee shop because my water was shut off and a crew of seven ripped out walls, ceiling and a door. The photo above is me in my guest bathroom with the culprit, that bent copper pipe.
In the past, this would have been a catastrophic event. But I’m relatively unaffected. In fact, it’s kind of exciting.
I’ve been wanting to remodel my home for a couple of years, but I’ve never progressed beyond watching Flip or Flop reruns. I’ve been afraid because I’ve never worked with a contractor before.
Now I don’t have a choice. I have to work with a contractor. The universe has a way of forcing you to expand your horizons. Rather than bemoan my misfortune, I’m grateful for the opportunity to grow.
And the great part is, it’s covered by insurance. It's like contractor training wheels.
How did I manage to turn this situation around? The answer to that question begins with why you think we’re here. The meaning of life.
I believe our experiences in this life, on this planet, are designed to refine our souls. And don’t most spiritual belief systems support that idea? Whether you believe in a religion that includes end-of-life judgment, or a religion that includes reincarnation, or even quantum physics, there is one common thread: every day presents several opportunities to shape our destiny.
Here’s a story about the day I first made that realization. It was almost exactly 20 years ago, right after I bought my first new car. It was a gorgeous red Jetta, one of the special Wolfsburg models that were built in Germany.
One day, I was driving around LA and I tried to change lanes as someone else was trying to enter the same lane. I almost hit them. A loud voice in my head said, SLOW DOWN. It was weird, like the voice wasn’t my own thought, but a warning from somewhere or someone else. But, being in my 20s with a kick ass new car that was built to drive on the Autobahn, I didn’t listen.
Less than a mile later, as I was crossing an intersection, an old lady ran a red light and darted in front of me. I couldn’t stop in time and we collided. I had just wrecked my first new car, only four months after I had bought it.
Not long afterward, I realized that had I listened to that voice, I wouldn’t have been in a wreck. Maybe the lane changing incident earlier was a warning. Or maybe it was a test, and the wreck was my big fat cosmic F. Either way, I knew I had been given a warning, and I ignored it. It wasn’t a coincidence.
Ever since then, I’ve looked at delays and unexpected events differently. It’s okay to feel a little disappointment or even anger when things don’t go as planned, but it’s important to let it go and look at the situation from a positive perspective. Whether it’s a red light when you’re running late, a burst pipe while you’re on vacation or a disabled child, there is always a positive perspective.
I don’t know why it’s positive for Tosh that he has autism, but I can say without a doubt that his disability is the best thing that’s ever happened to me. Before he was born, I should have developed better organizational skills, the courage to pursue self employment and the patience of an adult. But I didn’t. So, the universe shoved me into the deep end of the skills pool.
Learn this shit, the universe lovingly said. You need it.
So I did. In the process, I’ve become the person I’ve always dreamed I could be. Am I am so thankful!
Changing the way you think isn’t easy, but it gets easier with practice. If you’ve ever successfully changed a habit – like if you've quit smoking or learned to count to 10 before losing your temper – you’re already halfway there. Become aware of your negativity, catch yourself and turn it around.
Here are some positive mindset strategies that have helped me:
You didn’t think you were the kind of person who cared what people thought about you.
And then your kid was diagnosed with autism.
You’re not ashamed of your child – you’re truly not – and yet, when you’re out in public and people stare or say ignorant, rude things, your cheeks flush and tears well up in your eyes.
Recently I read that fear of judgment is rooted in guilt and shame. That statement really hit home for me because over the past year, my sensitivity to people who judge Tosh and me in public has decreased significantly.
Reading that statement made me realize why. It happened right after I became aware of some traumas I had experienced that related to his autism.
Judging from the feedback I’ve received from this week’s IGTV episode on this subject, my experience is common among parents of autistic children. Maybe it will resonate with you and help you tune out others so you can better enjoy your public family time.
Trauma #1: I blamed myself for Tosh’s autism
The more I talk about this with other parents, the more I realize we all do this. You know what I’m talking about, that ONE AWFUL THING you did that caused your child’s autism. No matter how many times doctors, friends and family or even research tells you that you’re not to blame, you just can’t shake the feeling it’s your fault. You made a stupid, horrific mistake that harmed the person you love most in the world. It’s no wonder I felt shame whenever someone noticed Tosh’s autism. I believed it was my fault.
Trauma #2: I was ashamed of my spectrum behaviors
I say this all the time – autism is genetic, and chances are pretty good that at least one parent has some sensory issues, social impairments, repetitive or restrictive behaviors and/or challenges with executive functioning.
And chances are pretty good that back when you were a kid, nobody knew anything about ASD or the fact that these symptoms were physical, and not the result of bad behavior.
I remember being scolded for what I now know are spectrum behaviors. I was overly sensitive, immature, forgetful and had sensitivities to texture, smell and sound. But it was the 70s and 80s, and my parents had no idea about autism. It’s not like they could read blogs on the topic or order books off Amazon. My mom worked as an aide in special education, and I don’t remember her ever saying one word about autism. Heck, hyperactivity was a brand new concept back then.
But even though it’s not my parents’ fault, it was still traumatic. I was shamed for behaviors I couldn’t control.
Everyone experiences childhood trauma. Because mine was rooted in feeling ashamed of my spectrum behaviors, it triggered emotional reactions whenever anyone directed the same at Tosh.
Then there are the traumas everyone has: experiences that made you feel like you weren’t good enough. We carry those traumas everywhere we go and judge everything we do through them, including parenting. You know this one applies to you if you assume that your child’s behavior makes everyone around you think you’re a bad parent.
So what can you do about it? My favorite release method is to write down everything I’m feeling. Don’t worry about spelling or grammar or even if it makes sense. Just get those feelings out of your body and onto paper.
When you’re done, take it outside and burn that muphuka.
Take a deep breath as you watch your pain turn into smoke and float away. You’ll feel better right away, but you may not be completely healed. Releasing trauma is a process. Feel free to repeat this exercise as often as needed, or find your own way to acknowledge and release your buried feelings.
It also helps to remind yourself that not everyone who stares is judging you. All animals turn to look at anything that makes a loud, sudden noise. It’s a survival instinct. Other people might have an autistic family member and are scanning your child to see if you’re a member of their tribe. Once I released my shame and raised my head proudly when I took Tosh out, I realized a lot of people weren’t judging us. They were smiling!
As they should. After all, he is pretty damn cute. 😁
Flying with an autistic family member can be stressful enough. But these days, it seems like every week there’s a news story about an airline that kicked a passenger off an airplane for no good reason. Too often, it seems like a case of discrimination.
As the parent of a child who screeches, kicks seats and has meltdowns, you can’t help but wonder if you might be the next national headline, like the Beegle family after they were escorted off a United flight by police in 2015.
You shouldn’t let this fear stop you from traveling. But it’s important to know your rights.
The Department of Transportation has specific regulations governing air travelers with developmental disabilities. The DOT defines an individual with a disability as anyone who has a physical or mental impairment that substantially limits one or more major life acitvities, has a record of such an impairment, or is regarded as having such an impairment.
The regulation also specifically states that individuals on the autism spectrum are covered under the regulation.
The DOT’s website has a very helpful guide that you can access here. The following is a summary of helpful tips.
Contact the airline ahead of time
Let the airline know if you will need to board early, if your family must be seated together, if your child travels with a service animal or if your child must bring any medically-approved liquids aboard.
The TSA has an excellent video on its YouTube account that specifically addresses autism. Passengers with developmental disabilities, including autism, have the right to be screened without being separated from their traveling companions. If a pat down is required, remember you can request a private screening. The TSA also offers an online Disability Notification Card you can fill out and print to show to officers at security checkpoints. The TSA also suggests bringing medical documentation that describes your child’s condition.
Many airports offer programs that allow people with developmental or intellectual disabilities to practice entering the airport, obtain boarding passes, go through security and board the plane. Sponsored by The Arc, a nonprofit organization that supports people with disabilities, the program involves airport, airline and TSA personnel, and serves to educate them about the needs of travelers with autism and other disabilities. Click here to learn more about this program.
Bulkhead seats are in the front row, and don’t have a seat in front of them. They can be helpful in accommodating an autistic passenger who struggles to sit still or kicks the seat in front of them. However, keep in mind bulkhead seats don’t provide for any bag stowage within reach, so purses and backpacks must be stowed in overhead bins during takeoff and landing, as well as during turbulence. However, your child can probably keep their iPad or AAC device on their lap during takeoff and landing.
Airlines are required by law to give bulkhead seats to individuals traveling with a service animal or with a leg that is fused or immobilized. Seating for these passengers will take priority over your child. However, if you contact the airline in advance and are prepared to explain why your child needs a bulkhead seat, you’ll increase your odds of getting one. For example, the extra room could provide space for soothing techniques during flight. A letter from a doctor confirming this need would be helpful.
Keep in mind that if you’re flying on an airline that has a business or first class cabin, you may not have access to bulkhead seating in economy class. The airline is not required to upgrade disabled passengers to accommodate this need.
You are also protected from being separated from your child if seating is reshuffled, according to the DOT, because you are needed to perform functions not required of airline personnel, such as feeding. Also, if your child would not be able to comply with evacuation orders, you must be seated together.
To show that you are traveling with a service animal, you must provide credible verbal assurance, harness or tags, or an animal identification card. A service animal must be well behaved, including training that keeps it from relieving itself in the cabin or gate area. It must also not obstruct an aisle or other area, so it must fit on your lap or at your feet.
If traveling with an emotional support animal, airlines may require a letter from your doctor. It must be on professional letterhead from a licensed mental health professional or medical doctor and include specific information regarding the fact that the traveler has a recognized condition, that the animal is needed as an accommodation, and other licensing information.
Learn more about specific requirements for service animals and emotional support animals here.
Do you have any tips for air travel with autism? Please comment below and share your knowledge with the rest of our Autism Oasis tribe!
For a kid with severe autism, Tosh is pretty photogenic. His school photos aren’t Hollywood headshot quality, but overall, he takes great school pictures.
Except this Spring. As you can see above, to the untrained eye, his Spring school photo was pretty bad.
But for this autism mom, that picture is my very favorite.
He’s standing up straight and still, with his arms down to his sides. If you’re intimately familiar with autism, you know that alone is an achievement. As Tosh’s mom, I see even more.
Last week, on Tosh’s 7th birthday, I took him to Disney’s California Adventure. Although he does relatively well in highly stimulating environments like Chuck E. Cheese’s, and he’s been to smaller theme parks like Legoland, Disney takes things up a notch. I shouldn’t have worried. Disneyland parks are very accommodating to special needs children and it made all the difference.
Happy Easter! I hope your family is celebrating today in its own unique way.
We are enjoying our Easter rituals, which conclude today with an Easter basket, egg hunt (with real eggs we colored instead of plastic eggs – a first this year!)
Heather Anderson is a natural health educator, writer, blissfully happy autism mom, fintech marketer and lover of life in Southern California.
Please join me on this autism journey. Let’s create a positive, supportive community in which we can learn, grow and prosper. Where the focus isn’t just on your autistic child, but on your own personal growth as well.