What Markel Can’t Ask For
“Trust me, though, the words were on their way, and when they arrived, Liesel would hold them in her hands like clouds, and she would wring them out like rain.”
Markel spreads his coloring book across the picnic table and pushes it closer to me. He gently wraps my fingers around a red marker and chooses the blue for himself. Together, we color an illustration of Spider-man web-slinging through NYC.
Markel and I have different lives, but we do have a few things in common. For instance, we both love Spider-man. We’re from the same neighborhood south of Boston. And of course, there’s the reason I was assigned to Markel’s session – when his social worker asked for someone who was “prepared to work with his limitations,” I was the first photographer they called.
That’s because Markel and I are both autistic.
It’s been over twenty years since I last visited this neighborhood. Back then, I rode a purple Huffy bike with pink streamers in the handles. I was raised around the corner. It was just two of us – me and my mom.
Working 80-hour weeks as a hairdresser, my mom made just enough to keep us stocked in Ramen, canned peas, and happy meals. I spent most of my early years in subsidized day-care, or camped out in the back of a salon because she couldn’t afford a sitter. We didn’t have a sitcom-perfect family, but she was dedicated, and it worked out. It would have been easier to raise me if she hadn’t had all of these obstacles in her way. Even so, I think I turned out okay.
What I’m saying is – you don’t have to be perfect, to raise a child – including a child on the autism spectrum.
Raising me must have been worth it – after I left for college, she decided to do it all over again, and adopted my little brother. He’s 12 now – the same age as Markel.
However – unlike me and my brother, Markel doesn’t have anyone, perfect or imperfect, to raise him.
Markel has lived in this current foster home – a residential program for kids with developmental delays, for two years. I don’t know where he lived before he came here. I don’t know what it feels like to yanked back and forth between homes – to adapt to a new place without notice, leaving behind the people he knew. I don’t know many times he’s been forced to learn a new routine all over again. I can ask him, but in the 30 minutes we have together, we can’t learn to speak in each other’s languages.
I do ask his clinician, Annette, about the type of family Markel would fit well into. She tells me that he’s so easy-going, he’d do just as well in a single-parent family as a two-parent family. He’d be fine as an only child, but he would adore older siblings – and judging by how popular he is here, they would adore him right back. Her smile is hopeful as she watches Markel run across the yard. She loves having him around, but knows a family could appreciate him even more.
A kid like this – he’s so easy to love.
Markel can ride a bike, but he needs training wheels. He has no parent to teach him how to ride without them.
If he can’t find a family to connect him to the rest of society, he will have no chance to make it out of group facilities. He will have no one to help fill out his first job application. When it comes time for his first interview, he won’t know how to look his interviewer in the eye. He hasn’t had years of social training to navigate a neurotypical world – the kind only a parent can provide.
No one will comfort him when the world gets too confusing and overwhelming. No one will offer him a safe harbor of unconditional love, no one will call to check up on him, no one will eat dinner with him on holidays. No one will anchor him, and teach him to navigate our non-autistic society – the way my mother did for me.
I’m getting ahead of myself.
Markel is not just another child facing the daunting statistics of unemployment and homelessness after aging out of foster care. According to his DCF file, he’s considered ‘highly autistic’ (that phrase is a misnomer, but you get the gist.) Aging out of the system won’t just increase his bad luck – it will guarantee it. He won’t stand a chance.
If he remains ‘autistic enough’ he might get to stay in a state-run group home through adulthood. If he learns to mainstream his behavior a bit, he might not be so lucky.
The thing about autism is – we’re all different. So we really don’t know what’s in store for Markel over the next decade, but we do know this:
If Markel doesn’t find a family soon, we may never learn to understand him.
That’s because Markel can’t speak in full sentences – he uses a tablet to communicate. For potential families, this is a turn-off. Most don’t understand that autistic communication is often eloquent and beautiful – it’s just that it’s no always verbal.
He can’t ask to join a family on his own, in the way most people are willing to listen. That’s why we need your help.
Talk To Me
Before our session, Markel’s clinician described Markel as non-verbal. That’s only partially true. His vocabulary is limited, but he expresses himself clearly and with gusto.
Markel can use sign-language and a program on his tablet to communicate, but during our session Markel speaks. Just not verbally.
New Advances in Non-Verbal Communication
Once non-verbal people on the spectrum learn to communicate in ways most people can understand, they tell us that they have understood the world around them for years before they were able to communicate to the outside. They understood every word between doctors, teachers, and parents – who talked over them as if they were pets, incapable of comprehension.
As we gain new technology and therapies to help allistic (non-autistic) people understand autistic people, we’re learning that a diagnosis of autism isn’t the mark of incapability we once thought.
“The boy went to the Institute where the clinical psychologist, after studying him, told the parents that they and had ‘AUTISTIC’ son.”
“‘It is a state when the child is so withdrawn that he is unable to understand what is going on around him.'”
“‘I understand very well‘ said the spirit in the boy.”
During our session Markel understood everything we said. We are the ones having trouble understanding him.
Strengths & Challenges
When we first meet, I expect Markel to need some time before he relaxes around me and my camera. It turns out, Markel is easy to work with, right away. He doesn’t mind a disruption in his schedule, and he’s just happy to hang out and do whatever. Markel goes with the flow.
During our session, Annette and a counselor, Ambrose, bounce him quickly around from activity to activity. It makes me a little dizzy, but Markel handles the transitions easily. At Markel’s age, I would not have handled this so well. If someone pulled me away from my routine for a last-minute photo session, I’d be so dizzy it might take me hours to recover. I am not as easy-going as Markel.
We know oodles more about autism than we did when Markel was first diagnosed. As Rebecca Burgess explains in myth-busting comic explaining the autism spectrum, we each have different strengths and weaknesses. As I mentioned earlier, Markel has an ability to transition that, at twice his age, I still can’t match. I’m still learning.
Markel has the elastic potential to learn and grow – with the right support.
And he’s not going to find that support – that acceptance, love, and guidance, locked in an institution.
Markel may never learn to speak eloquently (or maybe he will), he may never be able to live on his own (or maybe he will)- these are fears that give potential adoptive parents pause.
We get hung up on these things because this is what ‘success’ for our families looks like in movies. To grow independent, rich, and powerful. But are those the things you want?
Or would you rather grow kinder, happier, and find more people to love, who love you back?
Because no child ever, regardless of ability, can guarantee you riches. But this child – Markel, he can guarantee a lifetime of love connection.
And he will make huge strides once he’s settled in a safe place and a steady routine with people who love him. I don’t know what those strides will look like – all of us are complex and contain multitudes. But I know they will be life-changing and beautiful.
I know this, because Markel showed me – clearly and unmistakably. He wouldn’t just benefit from the comfort and stability of a family – he desperately, deeply, wants to be loved, to connect with those around him, and to be understood and contribute to a family.
“Connection is why we’re here; it is what gives purpose and meaning to our lives.”
Markel is happy to be anywhere other people are. When he’s sitting on a bench, he asks Ambrose to sit next to him for company. When he colors, or plays with toys or puzzles, he will gently take your hand and invite you to join. When I lie on the grass to photograph him from the ground, he joins me, and rests his tablet next to my camera so we can play together. He wants to participate, and he wants to do it with us.
When he rides his bike slowly across the thick and bumpy grass, he shouts out, “Wheee!”
That wasn’t for him – it was for us. When I draw close with my camera, he leans in smiling, closer, and closer, and closer, until he’s too near to focus. “Cheese” he says, while I giggle, trying to keep his nose from touching my lens. He’s messing with me. All he wants to do is make us happy.
Really, all he wants – is to hang out. To stay close. To share those quiet moments that make up a good life. Imagine how much laughter he could bring to the right family – one who will open up and listen.
A parent’s hope
Markel has his own hurdles to overcome. He’s been in and out of foster care since he was three years old, which is traumatic enough for non-autistic kids. The cash-strapped foster care system does not have enough resources, attention, or expertise to give Markel the training, connection, and love he needs to thrive.
They can’t see Markel the way a parent can. To see like a parent – you need to love like a parent.
The people who care for Markel are kind, patient, and they adore Markel. But they can’t be there for him when he grows up. They can’t love him with the stubborn determination of a parent. They can’t wrap themselves in hopes for his future and absorb him into their hearts and souls the way his mother or father will.
It takes a manic, driven, absurd level of hope to raise a child. That hope is what gets us through the long, sleepless nights with a newborn. It’s what gets us through temper tantrums in the grocery store and arguments with our teens. If any parent can get through those common childhood obstacles, then any parent can get though something as easy as communicating via ipad.
Hope is vital – but Markel doesn’t have someone to hope for him. Most people don’t even realize that autistic kids are loving, valuable members of society. Without parents to see the contribution kids like Markel make in our world, who will?
Arrested Development Is A Myth
When I tell Ambrose that I’m autistic, his eyes open wide, and he steps back in disbelief, as if a spaceship just landed in the parking lot. He pauses. “You…can’t tell.” He says.
That’s the common response. Many people outside the autism community don’t understand the breadth of the autism spectrum, or the effect experience, age, and environment has on our development. They don’t know about the many non-verbal children and adults who, once given the right tools, go on to write eloquent essays, publish books, and host talk-shows.
Markel needs more than kind, dedicated caregivers. He needs the tenacity and commitment of a parent. He needs the whole heart and faith of a mom or dad. He needs someone who will be there – every milestone, every year, through this stage of his development and the next. He needs someone who he can comfort him in frustration and celebrate with him in success.
That family – the group of people who will one day welcome him, they need him, too.
The air is hot, the my neck is itchy, the birds and engines of passing cars are noisy, and the sunlight is relentless. To cope with the barrage of sensory stimuli, I hide behind the view-finder of my camera, shutting out everything but the rectangle of shapes I can see through my lens.
Markel doesn’t have a camera – so he focuses on smaller things – the brake handle of a bike, the circular motion of pirate ships on his tablet, or the toys he presses into his lips to drown out the intense world outside.
“People see my body acting awkwardly. They mistake my body’s actions for evidence that my mind is dull. I believe many of my autistic peers have the same problem.”
“I have been lucky that my parents never made the mistake of giving up on finding a way for me to communicate.”
When Markel gets happy, he stims. He’ll tense his shoulders and fingers, squeezing the muscles in his face into a tight expression of excitement. He curls inward, and makes a vibrating sound in his throat. If you didn’t know better, you might think he’s upset, but he’s not – hes ecstatic. I’ve shared my white-balance cube with him and he’s over the-moon-happy with the geometric shapes and swinging lanyard. He plays with it and keeps it close for the rest of our session.
All of us stim – both non-autistic and autistic, just some of us do it conspicuously. If your knee is jiggling or you’re chewing your nails as you read this – that’s stimming. Maybe one day he will learn to tamp it down in certain situations, the way I do. Maybe he won’t. More and more people are growing to accept stimming as a natural, healthy thing to do – including many employers across the world. Stimming is normal and healthy. Everyone does it – some of us more than others.
“Let’s pretend you are like me. You can’t talk, but you have a well-functioning mind and can understand people. Imagine you answer everyone who says something to you, but only you can hear it. Others hear your voice saying things you don’t necessarily mean. They think that’s all you are capable of thinking. People see your repetitive flapping or tapping and they think it serves no purpose. They don’t understand that the minute you stop, the moment is flooded with lights that hum, loud sounds that echo, kids moving too fast for you to keep up with and people trying to engage with you. It is hard on me to put my stimming away, but I try.”
Every autistic person who contributes to the world, every autistic writer or speaker or song-writer who was once misunderstood and labeled as ‘locked-in’ – every single one of them has had one thing in common. Every child, autistic or not, who brought love and joy into a home in ways their parents couldn’t have expected, they all had that one thing, too.
It was an unyielding source of unconditional faith. It was an anchor to keep them centered when the world got too intense.
Every one of those people had one thing in common – a family.
They didn’t have perfect, super-hero TV-families. They had regular ones. Many of them had parents like just like mine – poor, single parents who didn’t have access to the best technologies or fancy specialty schools. They had parents who worked blue-collar jobs, parents without any experience, parents who did the best they could.
Just regular families. Like yours.
A family like yours could change Markel’s life forever.
“When we first started noticing communication problems I was terrified he wouldn’t be able to tell me if he was sick , that he wouldn’t make friends or enjoy life like we could. I ended up being really surprised with all the non verbal ways to communicate.”
“Picture boards were an amazing tool. We did some ASL and lots of work with great teams of speech therapists. And we started noticing all the ways that aren’t ‘communication.’ We watched Wally together and laughed together. We explore with our hands. He makes friends and is a generally happy little guy. Celebrating the little steps means you get to celebrate a lot.“
– Shannon M., mother of an autistic son
“She cares about everyone’s feelings and is always trying to cheer them up. I love my daughter. I wouldn’t change anything and I would do it all over again.”
Growing up autistic in a world made for non-autistic minds is difficult. Then again, so is growing up lefty in a world made for righties.
It’s not better or worse – just different. Families with lefties, women, people of color, LGBQT, and kids with disabilities love each other exactly as they are and wouldn’t trade them for a child who has an easier path ahead. Raising a child on the autism spectrum has it’s challenges, but so does raising any child. All of us will have our obstacles.
If you’ve gotten this far, and you’re thinking “I’d love to adopt a kid like Markel – but I’m not ____ enough”
I have some good news.
Remember that mother of mine – who raised me by herself? She’s ADHD. She’s dyslexic. She dropped out of school when she was eleven years old to care for her younger siblings – and she was enough.
Even without the adoption subsides that buffer the cost of care for children adopted from the foster system, even without the improved medicine, advances in technology, and inclusive education in public schools that have developed over the last twenty years – She was enough. She had enough. She did enough.
Odds are – you are enough too. If any tiny part of you recognizes your son in these pictures, don’t let your these tiny hesitations stop you from reaching out to see if you’re the family he’s been waiting for.
“Markel is legally freed and there are no geographic restrictions. That being said, I do think that it would be wise to find a family that is committed to building a relationship with him over time, which would include visiting him at his current placement in Eastern Massachusetts. Markel will need to have time to get to know his new family.”
– Kaylea, Markel’s DCF social worker
I’ve gotten a message from Markel’s uncle, who is caring for Markel’s brother. Unfortunately, they didn’t have the resources to adopt Markel, but they do wish for him to be safe and happy. I told you how easy he is to be loved – and it’s true.
That doesn’t change the fact that Markel needs a home with the resources and abilities to care for him, to love him and celebrate who he is. But we can do something even more wonderful. We can keep them in contact with each other.
If you are in the Massachusetts area and thinking about adopting, this could be your chance to adopt an amazing son while giving him everything he could ever want. If that’s you – only you can keep Markel connected to his brother. Markel is available for adoption anywhere in the country, but it wouldn’t sit right with me to not mention that if he is adopted nearby, by a family who truly wants the best for him, everyone could find peace and Markel’s brother can still be a part of his life. DCF will select the best family for Markel – but I urge you to share this with a family who is both the best and able to keep those he loves within reach.
“I really thank you for trying to help. I was in his life a lot when he was with my sister and I am the only person who he said ‘I love you’ to. I really just love him a lot and miss him, especially his brother, who lives with me now.”
– Markel’s Uncle.
Send Markel Some Love
If you’re not ready to adopt, but you’d like to show Markel he’s not alone, head over to Stimtastic.co and send him an inexpensive stim toy.
Markel doesn’t have his own stim toys – and has to work with the group home toys and random objects (like the cube I lent him), but he’d love something like this Chewable Soundbite Necklace ($6.50).
Order any item from Stimtastic as a gift and make a note in your order “FOR MARKEL.” They’ll ship it directly to Markel (extras will be sent to other kids in foster care), and donate 10% of the proceeds back to the autism community. I use Stimtastic jewelry myself. I can’t tell you what a huge difference it makes to have this to fidget with in stressful situations.
Click here to donate a stim toy to kids in foster care. For less than $10, you can give kids in foster care a tangible daily reminder that they are not alone in the world – because you care.
[Please make sure to note ‘FOR MARKEL’ in your order so our friends at Stimtastic know where to send it!]
In addition to spreading Markel’s story, you can find more ways to help youth in foster care that won’t stress your wallet or your budget. Everyone can do something – even if all you have is five minutes.
Click here to find more ways to help if you’re not ready to foster or adopt.
This post is the second in the ‘Somewhere Out There‘ series sharing the experiences of kids in foster care. Names and locations of minors may have been changed to protect privacy. Ashia Ray Photography does not receive any goods or services in exchange for endorsing Stimtastic (it’s just an awesome company). This post may contain Amazon affiliate links (all the profits fund this series). If you’d like to support do-goodery and the ‘Somewhere Out There’ series, find out how on Patreon.
Spread the word – Markel is counting on you to share this so he can connect with his future family.