Friday, October 9, 2015

Maritza's dream: Games that make therapy fun

By Megan Jones

It started with her brother. Maritza Basaran remembers sitting with him years ago, playing video games. Jaimie, who has autism, loved to hang out in the living room and fool around on his Nintendo. But without strong literacy and fine-motor skills, he couldn’t always play the games he wanted to. He couldn’t read the onscreen text, and sometimes wasn’t able to move fast enough to advance through the levels. So Maritza and her mother would plug in a second controller and play alongside him, doing most of the in-game work themselves.

The strategy worked for a while, but as Jaimie grew older, he caught on. Realizing that he wasn’t actually playing the game upset him, and he steadily lost interest in the activity.

“It was sad to see him give up on something that had once made him happy,” Maritza says.

Years later, in 2012, Maritza began work as a nanny for a toddler with cerebral palsy. She noticed the child tried to move and interact with the animated characters she saw onscreen while watching TV or movies. But, like Maritza’s sibling, it was hard to find media that she could fully engage with.

“She and my brother weren’t able to interact with the platforms the same way as other kids could,” Maritza says. “Not necessarily because of their disabilities, but because the media that was available didn’t suit their needs.”

Maritza knew the situation was avoidable, and began to think about how to make video games and other media that could be accessible for children with a wide range of abilities. “No kid should pick up a video game and think, ‘Oh, I have to work harder,’” she says. “No, you should have fun just like any other kid.”

Today, Maritza, 26, is applying her training in psychology and media design to a project at Holland Bloorview. Along with scientist Elaine Biddiss, Maritza, a research assistant and child media specialist, is working to develop a game that can double as physical therapy for children with CP.

Using the Kinect, a webcam-style add-on for Xbox, the game tracks players’ movements—that is, the motions they make in real life are reflected onscreen. The focus of the game will be on encouraging kids to perform therapy movements—such as reach and grasp—while completing different in-game tasks.

While the project is still in its early stages, some details are set. The game follows the story of Botley, a hapless but well-meaning painter robot who dreams of becoming an inventor. To help him with his painting, Botley invents a minion called a bootle. Happy with his creation, Botley tries to replicate his bootle. But when his plan goes awry, and he accidentally unleashes an army of minions, who begin to run amok, it’s up to the player to assist Botley in getting the bootle population under control.

“Our philosophy is that the kids are part of the show,” Maritza says. “You, as the player, are helping Botley. It’s kind of empowering.”

Gaming systems that use motion-tracking cameras for therapy purposes do already exist but they can be expensive and “kind of boring.” Maritza describes a typical therapy game where, for example, kids are instructed to follow an onscreen fish in a figure-eight motion in order to practice broad arm movements.

While the existing games might seem more appealing than floor exercises when a child is in clinic, they don’t pass muster at home. “The second it’s competing with television and other toys it’s rarely touched.”

By building plot, characters and reward-based incentives into the game—the things that make mainstream video games so much fun—the researchers hope to overcome some of these issues. 

And the games are designed to include players with different abilities.

“First, the actual navigation and controls of the game are much simpler to use,”  Maritza says. “We use a scanning system, so each menu option is highlighted one at a time and the child simply raises their hand or presses a single button to make a selection. Mainstream games often use navigation menus that require precise movements and targeting to make a selection and require several choices to continue with the game. Also, our menus and game instructions are seen in text and heard via narration so children can learn the rules even if they can't read.”

In addition, “the games are matched to the abilities of each player, making it much easier for kids like my brother to play. At the beginning there's a calibration where the system records how far the player can move their arms on the screen and how fast they can hit a target. For example, if a child can't reach the top right side of the screen, the system will record that and no in-game objects will appear in that location. And the difficulty settings, like speed of game objects, are adjusted to the ability of the player.”

In multiplayer games there will be a “skills match”  so that everyone is playing to the best of their ability with equal chances of winning.

Maritza says her own experience with difference has informed her thinking while working on the Botley game. In addition to growing up alongside a brother with autism and caring for a toddler with CP, Maritza herself was born with a cleft lip and palate, and was teased as a child. She believes this has helped her to develop an empathetic approach to her projects. She also spent time as a camp counselor for children with autism and Down syndrome. Working with children with a variety of conditions has allowed her to see disability as something multi-faceted, and to better understand the range of needs each individual may have.

Ultimately, the researchers hope the gaming system will accomplish two main goals: first, they would like the software to function as a fun way for children with cerebral palsy to reap therapeutic benefits. The ideal would be to see evidence that the game actually improves children’s range of motion.

The second aim is to provide inclusive, social play. “I think back to my brother and the exclusion he felt not being able to participate,” Maritza says. “We probably all dream of children having the opportunity to compete with friends and family members on an equal playing field.”

Elaine and Maritza have begun working with kids and families through Holland Bloorview's Children’s advisory council to test the game and they hope to repeat the experience soon.

At the end of the day, Maritza and Elaine hope that kids will find the technology fun. “It’s funny, we’re trying to get kids addicted to video games,” Maritza says. “To us, they’re beneficial. Other people may feel video games are bad, but we think they’re great.”


Thursday, October 8, 2015

She shoots, Cam saves!

By Louise Kinross
Cam Jenkins is Holland Bloorview’s family support fund and accommodations administrator. But in his spare time, he’s a goalie with the Silver Streaks—a co-ed sledge-hockey team that’s part of Cruisers Sports for the Physically Disabled, which operates in Peel and Halton.

BLOOM: What is sledge hockey?

Cam Jenkins: You sit on a sled with two skate blades underneath your torso and a rudder at the front. You have two mini hockey-sticks with picks at the end of the stick, so you can propel yourself on the ice. We’re taught to shoot with our left hand and right hand.

BLOOM: When did you begin playing and what is your disability?

Cam Jenkins: I began at 16 years old and I have spina bifida.

BLOOM: How often do you play?

Cam Jenkins: Right now we have three practices a week, of about one-and-a-half to two hours each. Then as the season gets going we’ll have one practice and one game each week.

BLOOM: What position do you play?

Cam Jenkins: When I first started I played forward and defense. Then I went to a tournament in Ottawa and because I was one of the most mobile in my sledge, they stuck me in goal. I've been playing sledge hockey now for 15 years with a small sabbatical while I went away to college and also lived in Whistler, B.C. 

BLOOM: Why do you play?

Cam Jenkins: I like being able to play Canada’s favourite pastime and be part of a team and work as a team to reach a goal. I went to a high school that didn’t have a lot of people with challenges, so at that time it was definitely a way to meet people in my community who had the same challenges as myself.

BLOOM: What does it cost?

Cam Jenkins: It costs $450 a year to become a member, and that includes ice time.

BLOOM: What do you like the most about playing?

Cam Jenkins: I love being a goalie became I’m the last line of defense. I’m either the hero or the goat. If I let in a bad goal I look bad upon myself. But if I make a beautiful glove save and everyone’s cheering my name and congratulating me, there’s nothing like keeping your team in a game.

My favourite part is just being around my teammates and helping them out because I believe that every player can be a part of the team, no matter what their role. I always encourage people to do what they’re good at. That could be blocking shots or being a goal scorer. If you’re not a fast skater maybe your role is to stay in front of the net while the other defenseman runs around and tries to get the puck.

BLOOM: Do you have to be good at sledge hockey to play?

Cam Jenkins: We want everyone to be able to come out and participate, whether they’re doing it at a competitive level or doing it at a social, fun level. We have different kinds of teams based on what you want to get out of it.

BLOOM: What age are the participants?

Cam Jenkins: Our youngest is six and there’s no upper limit. There are 12 to 13 players on each team and each team has a coach, assistant coach and trainer.

BLOOM: Is there anything else you’d like to share?

Cam Jenkins: The Cruisers are all about making sure everyone is included and feels a part of the team. I want to get across the point that everyone has a part on the team.

Tuesday, October 6, 2015

How to run parent-to-parent support

By Louise Kinross
Parenting a child with a complex, life-threatening medical condition and disabilities is stressful and isolating.
Some of the best support comes from other parents—whether it’s families sharing practical or emotional support on a hospital unit or a formal program that brings parents together.
Holland Bloorview’s Peer Support Best Practice Toolkit combines firsthand parent stories, peer-support models, case studies of Ontario programs, FAQs (and answers!) and a review of the research for parents and professionals wanting to start a group.
“Through case studies and talking to families we shed light on the very unique experience of families with very complex children,” says Julia Schippke, a knowledge broker on the Evidence To Care team at Holland Bloorview.
The toolkit was funded by the Ontario Ministry of Health and Long-Term Care. You can download it at the link. Section one of four gives a good overview of the project.

Monday, October 5, 2015

Inventive, accessible? That's what Spiral Garden is all about

By Louise Kinross

Many of you are familiar with Spiral Garden, Holland Bloorview's artist-run garden that brings children with and without disabilities together under a canopy of trees to tend an accessible garden, sculpt clay, work wood, make puppets and tell stories.

This past summer staff designed and built this innovative, accessible wash-up station for children to use to prepare food and clean up after cooking.

"In this solution, there's a plexi-glass shield to deflect water off the legs of those who use wheelchairs or who are standing," says Shannon Crossman, creative coordinator. "The length of the pipe allows for many children to use it at the same time. A course of split bamboo troughs transports the water to a rocky area for drainage."

Isn't that cool?


Wednesday, September 30, 2015

A radical idea: Be friends, make movies, respect disability

By Louise Kinross

Zeno Mountain Farm in Vermont has an unusual mission: create lifelong friendships by bringing together diverse people to make films and plays or do sports or music.

Last week 30 of these friends were in New York City for the premiere of their new film: Becoming Bulletproof.

It’s a documentary about the remaking of a 1920 Western, with a twist: its actors include people with Down syndrome and cerebral palsy as well as those without disabilities. The director and producer are award-winning filmmakers, but no one is paid to work here. And no one pays to attend. Participants come back every year. “The goal is to have these friendships last forever,” it says on the Zeno Mountain website.

I interviewed Peter Halby, one of two brothers who founded the program. What Peter has created is so radical, and so foreign to mainstream ideas about art, human value and disability, that it made me cry.

BLOOM: Why did you create the farm?

Peter Halby: We did it for our love of community and wanting to build something bigger than ourselves that would bring in a lot of the people we’ve met over the years.

I taught adaptive sports in the Boston area, my wife is an occupational therapist, and my brother is a special-education teacher. We’d worked at camps in the disability community and loved doing this kind of thing and bringing people back year after year.

We started Zeno in 2007 and said ‘Let’s take this to the next level and build a dream facility and create a lifelong network of friends that love getting together each year and having fun.’

Through my work I met wonderful people who happen to have disabilities. What was lacking in a lot of their lives was this sort of community that would be with people through their lives.

We also realized a lot of the creative stuff we all love, like making movies and sports, is enhanced with a diverse cast. It’s more fun and creatively interesting. At its core it’s friends coming back year after year doing fun, interesting things. No one is paid to do it.

Everyone is there for the same reason. We don’t have any hierarchy in our camps—we don’t even like the word ‘camp.’ It’s all about everyone contributing to the highest level of their abilities and being really honest with what people can and can’t do. But there’s no staff and no clients.

BLOOM: Do you have a background in film?

Peter Halby: We’d done musical theatre at other camps and then my brother moved out to Los Angeles, the land of movie making, so we thought we should make a film.

That first year we made a soap opera and pieced together friends in the area who would help with the film and shooting and lighting. It was a creative project we used to bring the gang together. Over the years we got better and better at it—the acting and production. For the last film we did, BulletProof, we got all the costumes from Universal Studies.

Over the years we’ve met friends who are connected with film, sound, costumes, scenes, sets, locations. When we have our movie camp in the spring, we call up everyone we know and say ‘We’re coming in, who has a connection that has a Western set? Or who knows where we can shoot a scene?’

BLOOM: How many camps do you run?

Peter Halby: We have nine camps a year and they run a week to a month long, so that’s over 100 days a year. The film camp is 2 ½ weeks. This year there were 45 of us there.

BLOOM: Can you describe the farm?

Peter Halby: Our home base is in Lincoln, Vermont. It’s a mountaintop farm with acres and acres of trees. But you can also see the Adirondacks and the green mountains of Vermont. There are six cabins in the woods. Four of them are accessible treehouse cabins. We have a big theatre barn—an ’1850s barn that we deconstructed and put back up.

The whole idea when we built the place was to make a magical place where people would want to come back year after year. The way we raised money to do our projects was through our movie premieres. People who loved what we do said whenever you get a facility, let us know and we want to help put it together.

Each cabin was donated by an individual or a foundation. We don’t get any government funding, but we do have a network of 4,000 friends of Zeno and close to 1,000 donors.

BLOOM: What’s the age range of participants?

Peter Halby: The age range is from eight to someone in his 70s. We’re open to any ability, although we don’t have anyone right now who is medically fragile. We have people with cerebral palsy, Down syndrome, autism, traumatic brain injury survivors. The mix of abilities leads to a more interesting dynamic.

BLOOM: Do you have participants who don’t speak?

Peter Halby: Yes, we have people who use assistive devices. One communicates ‘yes’ and ‘no’ with his eyes, and some smile for communication.

We have some people who need two people for their direct care and others who are pretty independent.

BLOOM: Do participants bring support workers?

Peter Halby: No, we would never have anyone bring a paid aid. It would break our philosophy of not paying anyone to come—which applies down to the cooks and nurses. People may come with a sibling, but the sibling wouldn’t necessarily work with the brother or sister or support them.

BLOOM: Where do participants come from?

Peter Halby: All over the country. We meet people through friends of friends. Part of the challenge of getting new people in is that we want to support people for life. They come back year after year. So it’s not open enrollment. We have a wait list and we can maybe have one or two new people at a camp. When someone says they want to come we say ‘We want to meet you.’ It’s a very intimate community. We want to learn about their interests and abilities and passions.

BLOOM: How do you manage to organize nine camps when you need people with very specific skills and everyone volunteers? How is that doable?

Peter Halby: That’s not the hardest part. In fact getting people to come and support us is not what I worry about. We have a huge network and people love it and in the end everyone comes for the same reason across disability: It’s community and family and friendship and fun. We’re on tour right now and there are about 30 of us, a mixed ability group, representing the new movie and we’re having a blast. We had a movie premiere last night in New York and then all went out to dinner. We’re off to LA next week.

BLOOM: What you’re doing is radical. Many youth with disabilities, especially in the high school years, are excluded and isolated.

Peter Halby: It is a radical idea. It’s a human right and a civil rights movement—the last great one in a way. And it’s so simple. It’s sad that it doesn’t exist on a major level. We hope this movie will bring awareness and understanding and acceptance to a higher level in the world.

BLOOM: What impact does your farm have on people?

Peter Halby: It’s life-changing. It’s the biggest community and family in a lot of people’s lives. It changes careers. People get married within the camp community. As an able-bodied person I take for granted the freedoms and liberties I have, and the ways I can keep connected with high school friends or any social network. I can just go out and do it. A lot of the people with disabilities that come here don’t have that human right.

BLOOM: How have your perceptions of disability changed over the years?

Peter Halby: I started working in the field when I was 15 and I’m almost 40 now, so I’ve been in it a long time. I don’t know how I’ve changed. I’ve always been in it and loved it and I love having a really diverse network of friends. I enjoy the different ways it challenges me personally—the ways I communicate with people or the different ways I connect with people. And the physical care that is involved—I enjoy all of that at this friendship level. I’ve been a teacher and I’ve been an aid. When you’re paid you can never get to this level of multi-beneficial communication and relationship. I was ‘the staff’ and that is a wall.

BLOOM: For some people with disabilities their only friends are paid.

Peter Halby: That is so prevalent in this community.

BLOOM: It seems unusual that you started this with your brother and your wives, and you all have the same passion.

Peter Halby: I met my wife at a camp similar to ours, so we came into it from outside. Will, my brother, brought his girlfriend in to the community and they fell in love with it. All of my best friends are involved.

For more than 100 days a year we’re living in the community. It’s not day trips. It’s living together 24/7. You can’t help but get really close and form really strong bonds.

When we’re making a film it’s a full-on creative project with all hands on deck. We run the camps on the premise that there is no wasted time. The one rule is you can’t do nothing. You have to take advantage of this moment, that’s the beauty of what a camp is all about. It’s focused time and energy on whatever the project is and it’s different than regular life.

BLOOM: There must be some challenges.

Peter Halby: As a director I’m constantly worried about people’s safety and making sure people feel supported and feel happy and healthy. And the logistical organizing of what we’re going to do and how we’re going to do it. Who’s going to cook? Who’s going to organize the meds? There’s so much we organize. Someone may get sick and you worry about that. But these are the smaller things compared to the bigger thing of this community.

BLOOM: In some ways our culture is becoming even less accepting of differences. How do you change people’s minds about friendship and disability?

Peter Halby: I think awareness. I think this film will help a lot. It shows everything we’re talking about in a really beautiful, incredibly well-made documentary.

The outside world has a misunderstanding of what disability is. It’s so vast and diverse and no two people are the same, just like in the able-bodied community. But people have an idea of what it is and that it’s a ‘thing’ that needs to be changed.

Even in mainstream media less than 1 per cent of disability is represented, and when you do see it it’s typically an able-bodied person playing somebody. I want a more open world. I want to see people having more diverse friends.

When you give people the time and understanding to get to know people there are ways we can all contribute and matter. That’s what happens at Zeno. Society needs to do more of that: giving people a chance to be respected and matter and have a purpose.

BLOOM: I think our readers will find this fascinating.

Peter Halby: The problem with Zeno is that we’re not an open camp. We want everyone to know about it, but it’s hard when so many people write to say they’d love to send their kid. Our mission is to support the core we have.

Ultimately, I want more camps like Zeno. We need more of these and we want nothing more than to help people start them. We would love to share everything we know and have these pop up.

Tuesday, September 29, 2015

'I'm ashamed to be jealous:' A special-needs dad

Yesterday this candid piece about being a special-needs dad on LinkedIn blew me away. It's such a rich account of the many emotions experienced by parents of children who don't meet conventional milestones. Author Mike Cook, a manager of Enterprise Services at Dell, Inc. in Oklahama City, said we could reprint it here. Enjoy! Louise

By Mike Cook

I have been blessed with an amazing family, starting with my wife (my rock). She is truly superwoman, and I don’t know how she does what she does, but I thank God for her every second of every day.

Between the two of us, we have four amazing boys.

Our oldest is 22 years old, recently married, and is in Air Force Intelligence. Our 20-year-old graduated valedictorian and was on the dean’s list in college. Our 12-year-old is in all-honours and read the Harry Potter series before he was five.

And last but not least is our youngest, Matthew, who will be three soon and is the happiest little man in the world. I wanted to share about all of our boys so that you realize how blessed we have been with some very bright young men.

At first glance, you would never be able to tell that Matthew is any different from other toddlers his age. No matter where we go, complete strangers always make the same comment: “That’s the happiest little boy I have ever seen.” Matthew always has a smile on his face.

What they don’t realize is that Matthew has major delays in his motor, speech, cognitive, and social skills. The doctors call it global developmental delay (GDD). In layman’s terms and what I tell everyone is: He doesn’t walk or talk yet. Doctors haven’t been able to determine what’s causing the delays yet, but for the last two years, our precious little boy has had to see more specialists than you can ever imagine.

Matthew currently has speech therapy, occupational therapy and physical therapy multiple times each week, and I must admit that raising a child with any type of delay, disability, disorder, condition, or special need is both a blessing and a challenge.

It’s a challenge for the obvious reasons. But it’s a blessing too: You can’t imagine the depths of victory and joy you experience when you see your child's reaction to overcoming his own challenges.

It’s the simplest things, like seeing his eyes light up waiting for you to acknowledge what he did when he puts his cup down softly instead of throwing it; the smile on his face when he climbs off furniture without any help, the clapping of his hands after he uses sign language to say “thank you,” or my favourite—the high-pitched dolphin-like sound he makes when he scoots over and hugs me to say “I love you!” Those moments are when I realize how blessed I am and what life is truly about.

People know me as a very open person who can usually talk to anyone. But what many don’t know is that after Matthew’s issues arose, I rarely express my deepest feelings. Instead, I internalize the problems we deal with and swallow them whole, because that’s what a strong father, husband—a strong man—is supposed to do.

I don’t want anyone to know how terrified I have been at times because I don’t want them to feel pity for me or think that I don’t love my son with all that I am. So, I want to share a few things about raising a child who has special needs in hopes of bringing a little understanding to those who don’t know what it’s like.

It’s tiring

As all parents can attest, parenting is already an exhausting endeavour. But parenting a child with special needs pushes us to an entirely new level of fatigue.

Even if I get a good night's sleep or have had time off, a level of emotional and physical exhaustion is always there, from the weight of tending to his needs.

Hospital and doctors' visits are not just a few times a year. They are typically a few times a month. Therapy sessions are multiple times each week. Paperwork and bills stack up, and spare time is spent catching up on cleaning, working with him on trying to crawl or walk, searching the Web in hopes of finding similar cases with cures to help him learn, or advocating for him in the medical and educational systems.

The emotional stress of raising a child with special needs has peaks and valleys that seem so much more extreme than those encountered in regular life. I am always so appreciative of my employer, Dell, Inc., for helping make life easier—from arranging schedules around Matthew’s appointments so I can work from home if needed, to understanding the last-minute fill-ins if my wife may not be able to make a therapy session or doctor’s visit.

It’s scary

I often worry: Am I helping him too much? Am I not helping him enough? What if I’ve missed something—a treatment or a diagnosis, and that window of time to treat it? What about his future?

Will he ever drive a car? Will he ever get married? Will he ever be able to live independently? I fear thinking of the hurts he will experience if he doesn’t catch up and is tagged as 
different by other kids in this harsh world. I am scared about finances. Finally, I fear what will happen to Matthew if anything were to happen to my wife or me.

In a way, I feel ostracized

I feel we are now outsiders due to a fear that something could happen to Matthew because he can’t protect himself the way a “normal” child can. I worry that he can’t say “stop” or “don’t” or that he won’t realize he should have said it until it’s too late. I worry that people simply won’t understand him. I’ve seen the sideways glances and rolled eyes from strangers when he throws food or does something they consider rude or disrespectful, which makes going out to restaurants even more difficult.

When my wife and I go to parties, we end up by ourselves, whether or not we have our little boy with us. If he’s with us, then we’re constantly watching him to make sure he’s okay. We don’t make our rounds and say “hi” to everyone. We simply can’t for the reasons I’ve mentioned above.

If he’s not with us, then we’re worried that something will happen to him away from us. We don’t go out with our friends the way we used to because it’s too frightening to leave him with someone who might not understand what he’s trying to say or sign. Sometimes it’s even too hard to get your own family to understand just how stressed out you are.

I’m ashamed to be jealous

Even with the beautiful family and blessings I have, I can’t help but feel a tiny pang of jealousy at times when a child younger than Matthew runs past me or calls out to his or her parent the way I want to see my son Matthew do.

What’s even worse is that this envy makes me feel as guilty as can be, because I am so proud of everything Matthew has accomplished. This little boy has worked harder than any of our other boys to accomplish everything he has been able to do, but I wish it hadn’t been so hard for him.

I hate when that little pang of jealousy hits me—this so-called “normal” child in front of me didn’t ask for my little boy to have a learning disability. This child doesn’t realize that when he calls out “Daddy,” for a split second, I think, “Why? Why did this happen to my son, and why can’t I hear him say 'Daddy'?" Then I push that thought as far away as possible because these questions are not fair to that child or to my little boy.

If Matthew ever reads this in the future, I want him to know that I have never regretted a second with him. Matthew, you have made me a better parent and a better person. You amaze me every day with every single accomplishment you achieve and the way you are always happy. I only wish I had known what I know now when your brothers were your age, for I would have spent more time with them.

I love talking about my son

My son is awe-inspiring. Some days I want to shout from the rooftop how funny and cute he is or how he accomplished something. Other times, when I'm having a rough day due to being made aware that Matthew is sick yet again, I might not say much.

I don't often share with others, even close friends and family, the depths of what I go through when it comes to Matthew. I feel as if something is always going on, and I don’t want to be a burden or seem negative. I do appreciate when people ask me about my son, but if I'm not sharing, please don't think that there isn't a lot going on underneath, or that I don't want to let you in.

Raising a child with special needs has changed my view on life. Nothing breaks this “lens” more than having a sweet, innocent child who was born with impairments that make ordinary living and normal “performance” difficult or even impossible.

My life with Matthew has helped me understand that true love is meeting someone exactly where they are—no matter how they stack up against what the world thinks they “should” be. Raising a child who has special needs shatters all the expectations that we build our lives around and pushes something else to the core: love and understanding.

I’m human

So, to our friends and family, future friends we haven’t had the pleasure of meeting yet, or strangers who know and love a special needs family somewhere in this vast world of ours:

What can you do?

Strive to include. Work to understand. Go out of your way on occasion to help a family who has a child with special needs. Realize that the stress and strain take their toll. We’re just trying our best to survive. If we seem secluded or if we’ve offended you with our words or our actions, we apologize for our moments of weakness. Hopefully, someday we can move forward together.

We do our best to make our family life look normal and to act like everything’s fine. And yet, we wish people might see through that facade every once in a while and understand that we truly appreciate the slightest effort to make us feel...special, just as our son is special.

Monday, September 28, 2015

It's hard to tell when special-needs parents are 'drowning'

By Tina Szymczak

In 2010, our darkest times as a family, I began to use the analogy of a swimming pool to describe the difficult parts of our adoption and disability journey. I hope the analogy will strike a chord with other people who struggle to care for another family member, young or old.

When my husband and I decided to pursue adoption, we never expected it to be easy. However, there was no way to know how very hard it would be, until we’d experienced it ourselves. Throughout the adoption process we were told again and again that to bring an older child into our home from the foster care system would be a huge leap of faith.

I now picture the adoption process as a huge leap into a swimming pool. In the adoption classes everyone stands around the pool. During the home study process and disclosure you get your feet wet. If you want to adopt after that, you better be willing to jump into that pool with your child, whether you know how to swim or not.

When we were given information about our son we did what we thought was due diligence. We asked all the right questions. We jumped in the pool knowing that our son couldn’t swim, but convinced he would learn, with us there with him. We were na├»ve and thought that if we needed services we’d just advocate for and get them (try not to laugh at me—I’d been working in early intervention for years and should have known better).

After a while we grew tired of holding our son up. We had to face the reality that he wasn’t learning to swim, no matter what we did. We called in more experts. They blew us out of the water when they told us he’d never learn. We grieved and reeled from this new information, but refused to give up.

We called for back-up, but what we got was a bunch of people standing around the pool. They wouldn’t get in with us. Some would sit on the edge and get their feet wet and give us helpful suggestions. That would buoy us for a little while. Most refused to sit. They’d stand in the distance and judge us and occasionally ask us if we were ready to give up and give him back.

People would come and go. Occasionally we were left with no one. A few times some amazing soul would come along and, when no one was looking, jump in the pool and hold up part of my son. Then their boss would come along, or it’d be the end of their work day, and they’d have to get out.

Our son’s diagnoses kept piling up—first Tourette syndrome, ADHD and obsessive compulsive disorder. Then later, autism and sensory-processing disorder. Then the biggest one: bipolar disorder.

After many years our son got bigger and he grew frustrated by his lack of progress.

We no longer cared if he ever swam on his own. We just wanted him to enjoy being in the water again. We knew we needed help to find other ways to accommodate him in the pool.

We looked around. We yelled for help. People came back to the side of the pool, shaking their heads and questioning how we’d ever managed to keep him afloat for so long. We politely but firmly asked for help. They asked if we wanted to give him up, send him back. They wanted us to admit defeat and get out of the pool, leaving him there. That was the only way the system could help us, they said.

We refused. We began splashing and making all kinds of noise. We blew whistles and got the attention of the people in charge. All the while though, I was beginning to drown. All those years of holding my son up had taken their toll: my body was failing.

Some wonderful people jumped in and lovingly took our son, but I was drowning. I couldn’t even begin to tell others what was happening. I later wondered how so many good, well-intentioned people never recognized what was happening to me.

Then I read an article called
Drowning Doesn’t Look Like Drowning.

“The Instinctive Drowning Response—so named by Francesco A. Pia, Ph.D., is what people do to avoid actual or perceived suffocation in the water. And it does not look like most people expect. There is very little splashing, no waving, and no yelling or calls for help of any kind.”

Drowning, from the surface, is quiet and undramatic.

Isn't it like that for us as parents? People look at us and see the “together” image we’re trying so hard to portray. We hide our weakness and fear—often times because we know people won’t take us seriously or our child won’t receive something—an intervention or placement—they need. Even as we’re unravelling, sobbing or screaming on the inside, we dress nice, fix our hair, arrive early and sometimes even bring cookies.

We keep on top of referrals that need to be made, reports that need to be sent and IEPs that need to be revised. We deal with meltdowns, illness and messes at home. We cry at night when our children are in bed because during the day we need to hold it together. If we don’t do it, no one will. We find the strength to call for help for our children. But we can’t do the same for ourselves.

We drown silently.

It wasn't until my son went into a therapeutic residential placement that I finally had time to take a step back and sort out what was my need and what his was. I realized that I needed to go back to therapy and I needed to reconnect with my friends that I'd let fall by the wayside. I also needed to take care of myself. I had cancelled and rescheduled appointments for dental, eye care and physicals so many times I'd lost track. Probably the biggest thing I did to stop drowning was to lay it on the table for my spouse so we could figure out who would be responsible for what. He turned out to be a great supporter and partner.

I don’t want to imply that our whole journey has been horrible (I’d jump in the pool again for our son, without hesitation). There have been many more loving, touching, heart-warming times. But I’m writing about the periods that are very difficult. As my friend and fellow parent wrote: “Yes there’s an idealistic tropical paradise pool and there is also a shark scenario, but reality is somewhere inbetween.”

As I assist other families and work in our community to change services, I’ve tried to pinpoint common “drowning” signs in families like ours.

If the parent is avoiding social events, holing up in their house or crying all the time, then you need to gently step in. Listen to them. Be non-judgmental and ask questions, so we know you're listening and interested.

It can be hard to know how people are doing if they don’t share their struggles, but you can always do the following:

Make meals or give gift cards to order food. Don't ask if you can do it. Just do it.

Offer to take the other children when parents have to take their child with a disability to appointments.

See if your employer will let you donate vacation or sick days to your coworker. We tend to use up a lot of days for sick kids, or when our kids are kicked out of school.

Come over and do a couple of loads of laundry.

Drop a card or quick note to let us know you’re thinking of us.

Let us vent about our kid or a particular situation that’s developed. Don't judge us.

Remind us that no one expects us to do it all alone

In addition to teaching people what to look for in parents who are barely treading water, perhaps we could adapt the pool and hire trained lifeguards to get in with us.

You can follow Tina Szymczak at
Spirited Blessings.