The Autism Photo Project: Capturing Owen

As part of my self-assigned autism photojournalism project, I am photographing other families who are also living with autism.  As I said in my post about my own son, our snowflake children are so very different from one another, and yet I’m finding that the collective experiences and daily emotions of running a household governed by autism are so very similar.

There’s something kind of reassuring and sad about this.  Yes, I can sit down with another “autism mom” over a latte and take comfort in the fact that she too had an embarrassing “I hope no one is watching me totally lose it” moment the other night with her son that makes me feel less guilty about my own less-than-stellar parenting moment.  At the same time, I wish that I could meet with one mom who has created a totally unique world for her autistic child that I could emulate as some sort of model solution for my own.  The fact is, there is no single set of therapies, drugs, schools, and diets that has been discovered as the guaranteed prescription to cure all autism-related ills.  So when I learn that another parent has struggled just like me and has not yet reached the promised land, while it’s nice to share laughs and tears, it’s also disappointing that I don’t have a cheat sheet to copy from.

That being said, I got the chance to meet a family a few weeks ago whose son Owen is doing quite well, from my camera’s point of view.  However, the years of work that this family has put in behind closed doors in order to build up to that successful little boy you see in my photos…those years pass by so slowly. The victories are so achingly incremental, and the details are always so much messier – to hear the family explain it – than what I was able to capture during these few hours in their home. While I look forward to the day my son can talk, interact, and function at a level like Owen’s, I recognize the hard years that this family has put in, and that – while their son looks a million miles ahead of my own son – his parents still feels like they have a long road to walk before they can rest.

We autism families never know whether our children will one day be able to live independently.  And if we are also lucky enough to also have a “neurotypical” child, we wonder how much of their autistic sibling’s burden they will have to carry as we grow old and less able.

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Because I believe it is important for families to have the chance to tell their own stories, I have included this family’s own words.

Here is our family, on a great day. Our oldest son Owen was diagnosed with autism spectrum disorder in the fall of 2009 when he was 3 ½ years old. As parents, my husband Kevin and I had already been through a journey of struggle and personal growth in starting our family. We had gone through the process of becoming parents and re-centering our lives around an energetic child. We had gone through the wonder and readjustment of a second son, Dylan, born in 2008 when Owen was 2. And we had gone through the onset of Owen’s epilepsy – 9 long months of multiple seizures a day until we found the right combination of medicines to keep his seizures under control. But with the autism diagnosis later that same year we began another journey. We came to recognize Owen’s autistic traits and challenges, and realize just how much work lay ahead of us. This new understanding of Owen started us on a journey away from other parents we knew, as well. We felt separated from parent-friends we had previously felt a strong kinship with, because their kids’ development was galloping ahead. Owen would make progress, but never enough to bridge the gap. He was growing in a different way, at a different pace.

Owen is almost 6 years old now. His main autistic attributes are difficulty with focusing, motivation, social communication and language, and engaging in social interactions. He gets scared and upset very easily. He has always been able to talk (part of why it feels like we were late getting him diagnosed), but isn’t sure how to have a conversation, or how to play with other kids. His delays make him socially much younger than his peers. I am not sure if I would call him “high functioning” – I am not sure what that means. I do know that there is so much of him that is normal. But each time we spend time with friends who have neurotypical children, there is this sickening whiplash effect, where we must face again that he is not normal. Not like other kids, not catching up fast enough despite constant work with special educators and multiple therapists.

The afternoon Maya came to take pictures at our house, Owen was firing on all cylinders. He was interacting with his brother and both of his parents. He was looking directly at Maya and the camera.

He was happy, talkative, and was even flexible on occasion. These are the days we live for, through the many days that are full of frustrations, tantrums, things he simply cannot do, and endless work. We were happy for Maya to be there and capture this true, happy portrait of Owen and his potential. He is a sweet, funny, wonderful kid, full of empathy for others. He wants to have friends just like everyone else, even if he doesn’t know how to do it.

A few months ago Owen and Dylan started getting into playing board games together [as a family]. Board games have turned out to be a great tool for our family, and getting them to play together is a huge accomplishment that has taken years.

Kids with autism can struggle to read social cues or play “with” other kids, and that is very true for Owen. He feels more comfortable and confident in situations where there are specific rules for play which he can learn and memorize, as opposed to make believe or playground play, in which it is hard him them to figure out what the social rules are.

Owen loves elevators [as illustrated with our kitchen magnets in the images above]. We could even say he is obsessed with them. An obsession like this – with something mechanical or repetitive – is common for someone with autism, and Owen developed his at 18 months, well before his autism diagnosis. He has memorized the numbers or names of floors on elevator rides all over the DC region, from the Metro rail stations, to parking garages, to the Baltimore Washington Airport. His most frequent play is to make elevators out of anything. Even when we try to remove all the toys with elevators or things he could make elevators with (to encourage expanding his horizons to more generalized play that might someday include a playmate), he just does it with his hands. We have seen him make elevators out of books, blocks, even magazine reply cards – anything flat and slightly rectangular.

Now that he is more confident with his speech, he frequently asks strangers what level they parked on, what level they are going to, so that we are often explaining to other people his elevator obsession as we hurry past, slightly embarrassed. I often think people will recognize us on the street as that family that loves elevators. For fun outings, especially on cold or rain afternoon, I sometimes take the boys to places just to ride the elevator. Know anyone else that goes to Union Station for that? Luckily, our younger son Dylan seems to enjoy the ride. We don’t know why he chose elevators as his obsession. Perhaps it is the feeling of movement, or the numbers, or the magic of a door closing in one place then moments later opening in another. Sometimes we prompt him to move on, so he doesn’t get stuck mentally in one place midway through an activity, but not always. His enjoyment is genuine; we just try to keep it within reasonable bounds.

In the [following] pictures, you can see Owen with his hands over his ears. Noise sensitivity has always been a part of life with Owen. It has very gradually gotten much better. But even as a baby, we couldn’t eat bowls of cereal in the floor below where he was sleeping — the sound of the spoon in the bowl would wake him up, even from upstairs. He still has major meltdowns in public restrooms if people turned on the hand dryers. He would cry at everyone’s birthday party when people would start singing Happy Birthday, so we were always running out of the room so as not to upset the other kids at the party. In fact just last year at his 5th birthday party we were able to sing it to him (quietly and with no clapping after) for the first time without having him get upset. Now you can see that when things are too loud or exciting he sometimes covers or hits/pats his ears.

Owen echoes speech and behavior from others, which can be common for those with autism. My husband and I often joke that half of everything Owen says he learned from one show on television, Caillou. In this picture [below], Owen is repeating a scene from the Caillou Christmas movie, where Caillou’s little sister Rosie misunderstands the present concept and wraps up the family’s existing favorite things, then hides the presents until Christmas morning. Since watching that movie a bunch around the holidays, now he takes things and wraps them up in napkins or whatever and “gives” them to you. It is so charming when he does it. We try to be charmed that he has learned something — has figured out the value of imitating something– and not give in to a sense of sadness that it isn’t an original idea.

As parents of an autistic child, we feel absolutely compelled to view everything Owen does – even simple board games – as an opportunity to increase his language or interaction skills. Everything is work to lead to progress. Along with Owen’s therapists, we use the games to work on turn taking and verbal skills. We always have a project. We always have something we are working on getting him to do. Sometimes that makes us feel like great, active parents. But most days it just makes life feel like drudgery – there is ALWAYS work. There is ALWAYS more he has to learn. We have to think of everything as a tool, and always be planning out what is the next, best skill to teach him.

In addition to always thinking about Owen, we are always thinking about the impact of autism on his neurotypical sibling, Dylan, who is 2 years younger. Dylan is very social, and loves to talk. He is a burst of energy, inquisitiveness, and determination. We worry about what impact it has on Dylan to have a brother who doesn’t always respond to his eager conversation, questions, and jokes. As a mom, I know I often have a shorter fuse for Dylan, having used up what little patience I do have on Owen. Also, I worry that I see both of my children only through the framework of autism, and not as individuals. For Dylan, when he has a milestone accomplishment, I sometimes can’t even enjoy that accomplishment with him or for him. I only focus on how much easier it was for Dylan to learn that skill than it was for Owen. For example it took months of work for Owen to learn to say “yes” as a positive response to a question and Dylan picked it up in a matter of days. Or when Dylan accomplishes something, I think about how it will feel to both of them when Dylan eclipses Owen, who is supposed to be his older brother. I know that I am supposed to unequivocally believe that Dylan will grow up to be more compassionate, patient, and understanding for having a brother with special needs. But of course I also worry that Dylan will grow up feeling neglected, uncelebrated, or less important in our family. Dylan is a great best friend to Owen, and draws him out by demanding social engagement.

I am so proud of both our sons.