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.”

– MARKUS ZUSAK, ‘THE BOOK THIEF’

An autistic boy hoping to be adoptedCooperation

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.

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Markel colors spidermanA Bright Future

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 – even 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 in foster care.

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’t ask him – he can’t answer me.

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 that – he’s easy to love.

 

Markel plays on the swings line break

Training Wheels

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 eye-contact training – 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 yet. He can’t ask to join a family on his own. That’s why we need your help.

 

The brake handle on his bike draws an autistic boy Divider line

Talk To Me

Before our session, Markel’s clinician described Markel as non-verbal. That’s not quite true. There is a vast divide between those of us completely incapable of speech, and those of us who can communicate, but haven’t yet figured out how to do it clearly.

Markel can use sign-language and a program on his tablet to communicate, but during our session Markel speaks. He has what it takes to connect verbal sounds and meaning. He speaks in one-word sentences, about as well as my 2-year-old, Nikolai. Just like Nikolai, he will get better at talking. Unlike my neurotypical son, he won’t pick it up on his own – he’s going to need our help.

New Advances in Non-Verbal Communication

Once non-verbal people on the spectrum learn to communicate effectively, 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 non-verbal people express themselves, 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.”

– Tito Rajarshi Mukhopadhyay, non-verbal autistic author

During our session Markel understood everything we said. We are the ones having trouble understanding him.

 

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A non-verbal boy signs for

Markel asks for ‘water’ using sign-language.

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 her easy-to-understand 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.

As Dr. Temple Grandin explains, the traits we were born with are not set in stone. We all have the elastic potential to learn and grow – with the right support.

“I am much less autistic now, compared to when I was young. I remember some behaviors like picking carpet fuzz and watching spinning plates for hours. I didn’t want to be touched. I couldn’t shut out background noise. I didn’t talk until I was about 4 years old. I screamed. I hummed. But as I grew up, I improved.”
I had people in my life who didn’t give up on me: my mother, my aunt, my science teacher.”
– Dr. Temple Grandin

dashed_line_2pt Markel joins me on the grass with his tabelt

Seeking Connection

I’m not a blind idealist. Markel may be one of the few autistic kids who never learns to speak, he may never be able to live on his own. But it’s more likely than not that he will make huge strides once he’s settled in a safe place and a steady routine with people who love him. 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.

“Connection is why we’re here; it is what gives purpose and meaning to our lives.”

Brené Brown, ‘Daring Greatly’

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. He wants to make me laugh.

Really, all he wants – is to hang out. To stay close. To share a happy moment. Imagine how much laughter he could bring to the right family – one who will open up and listen.

Markel says

Markel goofs around, forcing me to laugh so hard I can’t take his picture.

 

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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 push the way a parent can. To push like a parent – you need to hope 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. Hope is vital – but Markel doesn’t have someone to hope for him. Most people don’t even realize that autistic kids can grow up to become functioning members of society. Without parents to hope for Markel, who will?

“It is never too late to expand the mind of a person on the autism spectrum”

– Dr. Temple Grandin

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 training, age, and environment has on our development. They don’t know about the many non-verbal autistic 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. Only then can he break out of his shell and connect with the outside world.

That family – the group of people who will one day welcome him, they need him, too.

 

An autistic boy plays with a stim toy

dashed_line_2ptWhy We Stim

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.”

– Philip Reyes, Non-Verbal Autistic Writer

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. All kids do it – some more than others.

Markel inspects my light balance cube

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“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.”

– Philip Reyes, Non-Verbal Autistic Writer

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An autistic boy stims iwth happinessWhat We Need To Survive

Every individual on the spectrum who has gone on to do more despite early limitations, every autistic adult who contributes to the world, every autistic writer or speaker or song-writer who was once labeled as non-verbal – 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 – regular people 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

 

Markel spells his name with plastic letters

Hesitations

“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.”

Jill Rodriguez, author of ‘Proud Mom of an Autistic Child’

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, females, racial minorities, LGBQT and Deaf members 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 special 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.

Click here to fill out an Information Request Form & learn more about adopting Markel

 

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

 

Update 09/12/16:

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.

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An autistic boy plays with a stim toyOther Ways To Help

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!]
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 Small Ways To Help

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.

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Stay in the loop – get updates about Markel’s journey and more


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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.

Leave a comment to encourage more readers to share & help!

 

 

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