Three and a half years ago my life changed — at the time the change seemed bad, frustrating and confusing. I sat crying in a meltdown thinking to myself, “Why me?” I wanted to know why I was having such a rough time.
My friends, family, therapists and teachers kept telling me it would get easier and that there was hope. I’m going to be totally honest by saying, there were times I doubted this. There were times I was starting to lose hope.
But I’m resilient, courageous and brave. I’d been hurt, and misunderstood. But this all lead me to wanting to advocate and help teach others about autism from my perspective. I wanted to help solve some of people’s misconceptions and ignorance related to autism. So I used my negative experience to do so.
Here are some important things to remember:
Sometimes things happen for a reason, even if you don’t know the reason at the time.
Sometimes it gets harder before it gets easier.
Changes don’t suddenly happen overnight; it takes time and patience.
Don’t try and force yourself to go through it alone. Everyone needs a shoulder to cry on and people who love them.
It’ll be OK, even at times when things are far from OK.
This morning, as my 5-year-old son trotted off happily with his two loving grandparents, I backed away quietly in the coffee shop, feeling anxious.
My son is nonverbal and has autism and epilepsy. While I love and trust my parents enormously, leaving him with people other than my husband generates a significant amount of anxiety. I wondered, “Will he be OK? Will he be loud and stimmy and make my parents anxious or uncomfortable? Will they remember to take him to the toilet? Will he reach out in frustration and hit someone to garner attention to his needs?”
I must have looked anxious as I crumpled down in the overstuffed leather chair. An elderly gentleman across the way smiled at me and tried to initiate a conversation. He kindly asked me, “Where does your son attend school or daycare?” I answered but felt a bit unnerved that this stranger was asking me questions. He smiled and relayed that the school was a good one and hopefully I felt my son was well supported there.
I rather tentatively told the man my son has a disability and we’d purposely chosen the school based on its reputation. He flatly said, “I know he does.”
Again, I felt mildly irritated and put off.
I mean, who did this guy think he was? Announcing he recognized my son has a disability perturbed me. I didn’t think my son was behaving in a way that would reveal his invisible disability, and somehow this man had found him out.
The man continued and explained that he was a former vice principal at a now defunct public school that once catered to children with Down syndrome. He went on to explain that he’d also been married to a woman who had a child with a disability and had experienced and supported her struggles to access supportive care, housing and other services for his stepchild.
Immediately, my defensiveness and suspicion melted into empathy and relief.
Empathy for someone who gets it, even though they don’t have a biological child with a disability, and relief that the latter suggested I was among a member of my “tribe.” My tribe is a group of people who have or will spend part of their lives in the interminable but absolutely worthy struggle of exhaustion and advocacy.
By the end of this conversation, I began to realize my initial reaction of other-ing this man’s kind outreach to me only subsided when I learned he was part of my tribe. Maybe, I thought, just maybe I should appreciate that this man didn’t join this tribe by genetic affiliation but by choice. He chose to pursue a career in support of children with special needs, and he chose to marry a woman who also was a strong advocate for her child with complex needs.
Maybe this tribe is bigger than I realize? Maybe it’s me who’s gatekeeping too strongly around who I choose to reach out to, to allow in and to share my struggles with? Because speaking to this lovely gentleman offered me new hope for a larger and enlarging circle of support for all our children with disabilities.
The Mighty is asking its readers the following: Describe the moment a stranger — or someone you don’t know very well — showed you or a loved one incredible love. No gesture is too small! If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.
Most of my grown up life already didn’t look anything like I expected it to. And then along came autism and our world really flipped upside down.
I’d heard so many different perspectives on autism from professionals and parents:
This is going to be so hard on your marriage.
You are the only person who will advocate for your child.
The world is full of judgment. People stare and comment on your parenting skills.
Over and over I heard these exact same statements, so I accepted them as truth. I was scared and depressed about how bleak the rest of our life clearly was going to be. I was frightened my sons would never know happiness. Scared my marriage would crumble from the stress. Scared of everything really.
But now that our own life has unfolded, I realize many of these truths do not have to apply to us. And the ones that do? It’s not where we put our focus. Life is hard, yes, but it is also too good and too short to miss out on all the blessings it holds.
Here are five good things people don’t tell you about raising a child with autism.
1. You will realize just how good people can be. Our life is a journey, and we have met so many wonderful people along the way. Caring, kind, patient people with extra love to give. Those who have been affected by autism and those who haven’t but are willing to learn more. I’ve met so many teachers with so much passion they inspire me to want to change the world. Behavior therapists who have been hit and kicked and screamed at again and again, and yet they still show up for work the next day with a smile on their face. They’ve taught us skills we carry out at home that in turn have made my sons’ lives so much easier and happier. They rejoice over milestones and advocate for services right along side us.
If people do stare when my son is having a meltdown, I don’t pay any attention. I am more concerned with helping my son in those moments. I don’t focus on the people who just don’t get it. They are not worth any sacrifice of our precious happiness.
2. Failure doesn’t mean not doing it right– it means not even trying. I can’t tell you how many times I’ve sacrificed awesome in the quest for perfect. And then feeling like I failed because something didn’t go exactly as planned. I berate myself for the tiniest mistakes and the smallest flaws. Why did you say that? Why didn’t you do that? One day it hit me — what kind of message is this sending my sons? They are not perfect, yet I love them exactly for who they are. I love them even more for their human-ness. They get up every day and do so much out of their comfort zone. They try and try and keep trying, even when they aren’t able to get it right. That isn’t failure. That is inspiring and amazing and incredible. They have taught me perfection is overrated, and failure isn’t a lack of perfection — it’s a lack of trying. I now try to offer myself the same grace that I extend to my boys. I want the world to love and accept my sons, and to do that, I must practice by loving and accepting myself, exactly the way I am. Now, whenever I’m in unfamiliar territory and I don’t want to do something I think, “You can do this. If Greyson and Parker can move through this uncomfortable feeling, than so can you.”
3. Everyone is going through something. I try my hardest not to compare the “somethings,” because it’s a terrible waste of energy with no good outcome. What’s that? Oh, my life is harder? OK, I win or uh, lose then actually.
Comparison is a game with no winner.
Here’s the deal: life isn’t balanced or fair, and the sooner you accept that, the sooner you can move forward and seek happiness. Hard circumstance in life can open you up and make you softer to the world and to people suffering. Autism has grown my heart ten million times bigger. Now, when someone else is going through something hard in life, I try to reach out to him or her. I try not to be afraid to mention the word, whether it’s death or cancer, divorce or autism. I’ve found an empathy for mankind that never before existed to this degree. We are all in this human thing together. There are so many ways we can inspire, share and connect, regardless of circumstances. We must pave the paths for those who walk with us and after us. If you focus too much on what isn’t, you miss all the what is — and oftentimes, what is… is amazing.
4. Milestones feel like your own personal holiday. Like fireworks and Christmas and York Peppermint Patties and Disney Land and puppies and a million other good things rolled into one.
They have the ability to make your whole day, week, month and sometimes year. I still smile when I think of the first time my son Greyson pooped on the potty or was first able to make a “C” sound and say “car.” I realized early on our family’s milestones don’t look like others, but that doesn’t mean they aren’t amazing.
Sometimes I want to call them “ten-milestones” because they arrive so infrequently. But because of that, every inch forward is celebrated in this house. I might go so far as to say milestones are more amazing because they had to be fought for, earned and may have even taken forever.
5. Life doesn’t have to be perfect to be amazing. This unexpected life also holds so much beauty. There is no parallel universe where everything is good and perfect and easy. When you visit that land of fiction in your imagination, it blocks you from being able to live and accept today.
This is how your story goes: you have two choices, fight it or embrace it. I’ve done both, and fighting it takes too much energy. I’m going to screw up, I’m going to try things that don’t work. I’m going to do 99 things to find the one thing that just might possibly be the home run. That’s the path with autism, winding and weaving exactly how it is meant to be. My sons teach me to slow down. They help me notice so much beauty in the world.
They teach me the importance of hard work, taking breaks and never, ever giving up. They make me believe life can be amazing. Sometimes I still can’t believe God really gave them to me. I am so lucky.
When I meet new parents just starting out on their journey with autism, I tell them the good stuff. Because it exists. And I’m sure everyone else has already repeatedly told them the downsides, heartaches and difficulties. I just want to remind you your life can still be amazing too. In life, happiness isn’t a guarantee—but each one of us deserves to find it.
Trying to advocate for my son while also attempting to raise autism awareness can be a tricky business because my personal experience with autism is limited to one person: Mareto. Yes, I know other children with autism (which wasn’t the case a few years ago), but I don’t know them or have experience with them like I do with my son. So, when I share about autism and parenting a child with autism, it’s from the perspective of Mareto’s mommy. And sharing can be frustrating because often I get responses like the comments above.
What do you say to someone who doesn’t think your child looks autistic? Does autism have a look? Yes, I suppose it does. It looks like beautiful brown eyes that sparkle in the light. It looks like a wide smile and a face that lights up with joy over the sight of a train. It also can look frightened and confused and bothered by loud noises. Autism can look like blue eyes or green eyes, blond hair or black hair or brown hair or red hair. Autism can look like eyes that never quite meet your gaze or eyes that have learned to make contact except when overwhelmed or frightened. Autism can look like diapers at 5 or potty trained by 3. Autism can look like flapping and spinning or sitting quietly with an iPad. Have you caught on yet? There is no one look to autism.
Did my son seem “normal” to you in the ten minutes you spent with him? Well, that’s nice because he is normal. He’s a sweet, normal, beautiful boy with autism. If you’re trying to tell me that you didn’t notice any signs of autism in your limited experience with him, that’s OK, too. But please keep in mind that Mareto has good days and bad days, and sometimes he has good hours and bad hours. But if what you’re really trying to tell me is that you don’t think he has autism, then please consider how hurtful that might be to us, his parents. Please consider how that might invalidate all our efforts, all our battles and all our triumphs. What you’re really implying is that we’ve wasted all our time for the last two and a half years because he’s just “normal.”
Or what about the little girl down the street? The one who doesn’t look or act like my Mareto. Her parents are concerned and have been referred to a specialist to evaluate her for autism. But she couldn’t have autism because she’s so different from my son. She doesn’t share the same struggles or act the same way. She eats just fine, and maybe she’s even potty trained. But she has her own list of quirks, and maybe it is something… but surely not autism. In comparing her to Mareto we make a common mistake. We forget that autism is a spectrum — a wide spectrum of incredible people with varying gifts, interests, looks and struggles.
There’s no one look to autism, and there’s no one face of autism. My friend’s son loves fruit, but my son is repelled by it. They both have autism. Her son is a blue-eyed, blond-haired little boy and mine is a brown-eyed, brown-skinned little boy. They both have autism. Sometimes my son makes eye contact, and other days he struggles to meet my gaze. He still has autism in each moment. Sometimes my son will play enthusiastically with other children, and other days he hides in the pantry to escape all the noise and interaction. In each scenario, he still has autism.
My son is not the face of autism.
But he is one of the many beautiful faces of autism.
Dealing with insurance companies is the worst. Getting on the phone to discuss your coverage can be like embarking on an epic saga filled with disappointment, confusion, stress and maybe a threat (or two).
Here are 27 thoughts everyone has while on the phone with the insurance company:
“OK, I can do this. How bad can it be?”
“Annnnnd, I’m on hold.”
“All right, it’s taking a while, but I’m sure I’m next…”
“This is officially taking FOREVER.”
“Is there even a person on the other end?!”
“How has this phone call not even started?”
“I wonder if I could just doze off a little while I wait…”
“Oh yeah? My call is important to you, is it?!”
“Somebody… help… me…”
“Oh, oh, oh! A human voice!”
“Nope. Just the voice recording again.”
“This crappy elevator music is rotting my brain!”
“Yessssss, a human voice. For real this time!”
“Now, let the battle begin.”
“I’ll ask you questions all day long if I have to. Consider this a warning.”
“Please, please, please say we’re covered.”
“Oh, I’ll show YOU what ‘medical necessity’ looks like… “
“I wonder if I can bribe this person… ?”
“I’ve spoken to five different people and received five different answers!”
“You will NOT put me back on hold.”
“Wait, who is this? Do you even work at this insurance company?”
“OK, I can do this. Hang in there.”
“Do not start crying. DO NOT start crying.”
“Maybe we don’t need insurance. I could just sell a kidney…”
“I’ve wasted so many hours of my life on this phone call… “