I am Nat's ghostwriter

This piece by Susan Senator (centre), author of Making Peace With Autism and the Autism Mom's Survival Guide (for Dad's too!) touched me. Susan always writes with great honesty and insight about raising her son Nat (left). Here she writes about her role in speaking for Nat, who has autism and limited speech. The truth of this line hit me: “I notice how the norm for most people in our family is to ignore Nat.” Susan describes how a child's inability to communicate will leave him isolated, even within the family, as an adult. And it's not because siblings and other family members are mean! I don't think parents of younger kids foresee this. I didn't. Much food for thought. Thanks Susan! Louise

By Susan Senator

Nat’s going home now. It’s always a blue-tinged moment for me when he leaves. I never fail to wonder if he is doing what he really wants in life. Is Self-Determination an attainable goal for someone like him? When Autistic Self-Advocacy Network (ASAN) says something like, “Nothing About Us Without Us!” can that include Nat? What if I am the person who speaks up for him the most? Am I then to be included in that “us?” I hope so.

I know I can speak for caregivers — the ones who really, truly care for and about their autistic loved ones, not the ones who phone it in or worse — when I say that we deserve a welcome at that table. And I do feel welcomed by the autistic self-advocates, and I think that’s how it should be. I wish their language could be amended to reflect the fact that people who have the challenges Nat faces really depend on others to speak for them. Some things about him have to happen without him. I wish it were not so, because I want him to be the author of his life. But he always has a ghostwriter, mostly me.

I don’t know how Nat feels about this reality. Is he used to not doing a lot of things for himself, by himself? Does this bother him? Or is he accepting of it? Maybe both. I guess everyone’s different in how much they accept of their inabilities. Anyway, I try so hard to talk to him, to include him in our conversations, but he still is talked about, talked over. Others are far worse than me in this regard. I’ve seen so many well-intentioned people ask me what he’d like to drink. To them, I am that intertwined with Nat’s presence. They think I know. This Christmas it was very natural for me to answer, “I don’t know, you’d have to ask him,” completely without anger. It came out naturally; I knew Nat would answer. How does he feel about these kinds of situations? I hope he’s proud that I just steer people to him, more than pissed off that I have to do that.

I notice how the norm for most people in our family is to ignore Nat. His brothers do not even think to include him in the simplest of activities, like looking at stuff on their laptops together. I wish it were different and yet this is how it has to be. Their lives, their decisions have to be their own. I know that if I were to ask them to include Nat they would, but would that be good for them? As it is they have had their lives changed greatly by having Nat with them — in good and bad ways. I cannot decide things for them without them. It feels like it is crossing a line to do that. Don Meyer, director of the Sibling Support Project, told me in an interview that you have to let the siblings have their own existences, let them do what they need, their lives are hard enough. That there are so many questions in their minds, fears for the future both named and unnamed, that they wrestle with in regard to Nat, that for me to then step into their consciousness and give them tasks, basically give them the message that the thing they are doing is not nice — would be an invasion of an important boundary. It’s not that they’re being mean. It’s that they are being themselves. I never let them be mean. But this is a gray area that now that they are 22 and 16 they must navigate themselves. They have to come to it themselves and the more they are allowed to be who they are, the more likely they are to come to Nat in the future and open their arms to him.

I try hard to let the three of them determine for themselves who they are and what they want to do with their lives. But they do need my guidance. They cannot be allowed to be mean. Is not including Nat mean, or is it merely what they do right now?

As for Nat, not being able to speak for himself much is one of Nat’s greatest challenges. He is frequently passive or unable to determine what he wants, and so it is a complete conundrum to help him in this regard. Helping him not be passive — the only way to do that is to sabotage things, make him so frustrated that he has to ask for them. It feels cruel and in the end, it doesn’t really help. It’s an ABA-ish solution, one where you may end up helping but the means of doing so are questionable.

You can’t force someone to move past their disability. You have to accept their limitations as much as they need to. You have to give help, and they have to accept it, but you also have to not help sometimes. Sometimes you also have to step back and let things go on in an unsatisfying, imperfect way. I don’t like that. And so, letting him go home Sunday evenings in this murky set of circumstances feels bad to me, like it does when people basically ignore Nat. In the end I have to hope that what we are doing or not doing for Nat is what he would want. Or at least what is okay with him.

Susan Senator is the mother of three sons, the oldest of whom has autism. She is an author and disability advocate and her published work can be found at http://susansenator.com.

Read More

This looks mesmerizing

Trailer for Stand Clear of the Closing Doors.

Read More

Happy holidays!

Read More

Wanted: friends

By Nathalie Wendling

I think having friends is the most important thing in life. No matter how bad my day is going, having a friend around seems to make it better.

Finding friends for my 14-year-old daughter Melanie (above right), who has Cornelia de Lange syndrome, has been an endless, exhausting and sometimes devastating, struggle.

In nursery school, the whole class was invited to a birthday party—except Melanie! In Grade 2, Melanie was invited to a party, but bullied when she got there. Girls took turns pulling down her pants and laughing. There were so many difficult moments and painful realities that I didn’t want to see.

In elementary school I figured out one-on-one play dates didn’t make sense. Melanie couldn’t communicate properly and had no idea how to socialize. So I'd invite a bunch of girls over at the same time. Over the years, these girls learned how to communicate with Melanie, understand her differences and even help with some issues like toileting. The girls were comfortable with all of it. They loved Melanie and loved coming over as a group. The hardest part was accepting that Melanie could never bond with the girls as well as they’d bond with each other.

By Grade 5, our local school couldn’t meet Melanie's needs. So we placed her in a special program 45 minutes away. The program was designed for children with special needs. We were excited and curious to see if Melanie would bond with other children with disabilities. 

Within two years, Melanie made a friend at this school. But she lived far away. We tried a few play dates but the distance to get together was absurd. We'd drive three hours for a two-hour play date. Melanie would cry. She wanted to see more of her friend. The two girls were very comfortable with each other. They'd spend hours on the phone, which was amazing because Melanie can’t really talk.  

Melanie seemed more at ease and confident in her new classroom as well, which was a program for 10 children with special needs (as opposed to the full integration with an assistant she’d had in our local school).  

Then, in Grade 8, Melanie had numerous health problems. She was absent from school for almost six months. It was awful, lonely and depressing. No phone calls, no visits, no cards and no friends nearby. Her new friend lived too far away. Melanie was alone all the time. She seemed depressed for the first time in her life. It was heartbreaking. 

“This is not a life,” I said to my husband and son Tommy. “Something has to change. Friends are so important. We need to figure something out. We need to find friends! We live in a small neighbourhood. Where is everyone? Everybody deserves at least one good friend!”

So we discussed some options. We decided:
-Melanie needs to attend a school with a special-needs program with some integration that is much closer to home (one exists in our neighbourhood for Grade 9) 
-Melanie needs to find friends, maybe peers with special needs, close by.
-Melanie needs to get out of the house to an activity in our neighborhood—not downtown where most of the activities are offered
-As a family, we need to find a common activity that isn’t TV! We can't ski, skate or go swimming together, so what else can we do? 
-As a community, we need something for everyone: children with and without disabilities, teens, adults and seniors. We need inclusiveness and integration. Melanie enjoys being around people of all ages. 

After months of thinking and intense discussions, we had a plan.

Last spring we started a hand drum circle in our basement with two other families—moms, dads and siblings. We found a teacher and bought some hand drums.

After six months, we moved the drum circle to the Legion in our neighbourhood. And the circle keeps growing. By February, more than 50 people will join: old, young, teenagers, those with and without special needs. Everyone in our community is invited.

The drum circles are a blast of energy and super social! We never imagined they would be this fun! Melanie and her brother Tommy have made new friends. My husband and I have made new friends (we needed some too!).

Melanie was able to reconnect with her elementary school friends from the community. Last week, we invited the group of girls who used to come to our house when Melanie was younger to the drum circle. Melanie was ecstatic to see them!

Melanie also gets to make new friends. One is Rob, who is 31 and has cerebral palsy (above centre). He attends the drum circles on a regular basis. He also comes over to our house for dinner and watches Tommy (above left) play hockey at the arena.

Melanie, Tommy and Rob have become good friends. They laugh so hard together that they can’t breathe! And that makes them laugh even harder.

Nathalie Wendling is happy to answer questions about her drum circle at nats.wendling@gmail.com. You can follow the family at 2 Pet Rats, the website they created when Nathalie and her son Tommy wrote Melanie and Tommy Have Two Pet Rats and One Syndrome.

Read More

For some parents, the 'empty nest' is a fiction

By Ijeoma Ross

Unexpectedly we have found ourselves in the midst of a transformation. It’s not our transformation, but one that is taking place around us.

Many parents we know are undergoing a major transition within their families. It seems that suddenly their children are old enough to leave alone for brief outings or older siblings can be pressed into 'babysitting service' for a spontaneous night out. The hassle of finding constant care for offspring is evaporating.

While there are different concerns about leaving teenagers unattended, this is the first step toward the joys and adjustments of an empty nest, when, after years of dedicating time and energy to their children, couples are free to do what they want. They can eat out, travel and generally rearrange their schedules at will.

It sounds nice.

For parents with severely disabled children, it also sounds like fiction.

Despite his age, we cannot leave our son Deane alone and I can’t imagine a time when that would be possible.

His younger sister, who understands Deane’s needs completely, can look after him for a brief period of TV watching, but cannot lift or reposition him. We also feel strongly that she has her own life to live.

It’s not that we are without a social life. Our friends are very accommodating about doing spontaneous dinners and events at our house. They are also more than willing to put their backs into lifting Deane’s wheelchair into inaccessible houses. But now that they are increasingly free to enjoy short-notice activities and meals without kids, we just can’t adapt to that kind of schedule.

In the short-term, a full-time nanny or a robust roster of capable babysitters could provide some flexibility. But, with the exception of a couple of families who have had nannies since their children were young, I know few who have managed to make either arrangement work.

As children get older, bigger and heavier, many nannies cannot do the lifting, repositioning and other physical care. Babysitters grow up, move on to real jobs and to real lives.

I have spent much time working on a solution for our immediate needs. Finding someone reliable usually buys me a few months, but then something comes up and I am forced to start again.

The long-term issue is so depressing that I have ignored it—although I recognize that is no longer a responsible option.

So, as I listen to our friends and acquaintances talk about their increasingly free lives, I get that isolated feeling I used to get when parents talked about their children learning to walk, talk and pass other milestones. It’s another reminder that no matter how much we try, we live a very different reality.

Ijeoma Ross is a freelance writer in Toronto who blogs at Disabled Families.

Read More

Former client helps youth gain independence

By Louise Kinross

Gabriella Carafa is a social worker in our LIFEspan program with a long history at Holland Bloorview. Since she was a preschooler she's been a client in our neuromuscular clinic. As a teen she volunteered on our youth advisory and as a mentor and more recently she worked at our university-based Independence Program as a youth facilitator, mentor and social worker. BLOOM talked to Gabriella about how she got interested in working in children’s rehab.

BLOOM: What are your memories of Holland Bloorview as a child?

Gabriella Carafa: I always enjoyed coming here because it was such a welcoming place, even though the clinics were long and we’d sometimes spend the entire day (or what felt like the entire day for a child!). I didn’t come here often—once a year for my clinic appointment. I also went to the dentist here and had my orthotics made here.

BLOOM: What was the greatest challenge for you growing up with a disability and using a wheelchair?

Gabriella Carafa: There weren’t any challenges until I became a teenager. Then I started to realize my life will look different from my friends, who don’t have disabilities. They’re going to backpack around Europe and if I need to do that I have to bring someone with me—like my mom or an attendant. At that point I didn’t know how to manage being away from home for more than one night. I needed to learn skills to live independently and that’s why I went to The Independence Program (TIP) at Holland Bloorview.

BLOOM: What was the most important thing you got out TIP?

Gabriella Carafa: I learned that independence doesn’t mean doing everything for yourself. It means making decisions for yourself. So I could have an attendant come and help me with my morning routine so that it didn’t take three hours, but only one hour.

A lot of youth feel they have to do everything themselves and that if they don’t do it themselves, it doesn’t count. Once you go to college or university or are working or volunteering, you’re not going to want to spend three hours getting ready in the morning. At TIP they said: ‘Yes, you can do this now, but when you have a job and kids and are married, what time are you planning on waking up?’

BLOOM: What other things did you learn there?

Gabriella Carafa: I realized how much stuff I didn’t know. I was 18 and I didn’t know how to make a grilled-cheese sandwich. At home I was like ‘Okay, I want grilled cheese’ and my mom would make it. At TIP they said ‘Okay, so how do you make grilled cheese?’ It was a lot of practical things. The bigger thing was realizing I could still reach all my goals. My life would look different, but everyone’s life looks different. No one has exactly the same life as anyone else. I’ve still managed to accomplish great things.

BLOOM: How did you decide to become a social worker?

Gabriella Carafa: I chose social work because I wanted to be able to work one-on-one with clients and families, but also to tackle larger macro policy issues through advocacy. I’ve always wanted to work with individuals with disabilities and working here was great because it’s my way of giving back to the organization. Not only am I a social worker, I’m someone with a disability and someone who got services here. I feel I have a different understanding.

BLOOM: How does your firsthand experience aid you?

Gabriella Carafa: In social work we have something called ‘use of self’ where the therapist can bring parts of themselves into the equation. So if you have a good therapeutic ‘use of self’ you know when to share things, when it will help build a stronger therapeutic relationship, and when not to, so you don’t make it about you. People tend to feel like they can ask me questions.

BLOOM: What do you do in the LIFEspan clinic?

Gabriella Carafa: I see clients and their parents, often together. They’re coping emotionally with the transition to adult services. Most of the families feel like Holland Bloorview is their home and a lot of services are centralized here, or at SickKids, as opposed to in the adult system where services are scattered at different hospitals. Some of my work involves equipping clients and families with advocacy skills to navigate the adult system.

A lot of it is about funding, about connecting with the Ontario Disability Support Program or Developmental Services Ontario. They want to know what’s possible with housing options, relationships, sexuality.

I strongly encourage clients to go to our life-skills programs because I find youth often don’t know what they don’t know. Our life-skills programs can help them see what their strengths are and what they need support with as well as what their life may look like in the future.

BLOOM: Who do you work with?

Gabriella Carafa: I work with a youth facilitator, a life-skills facilitator and a nurse practitioner. We all work together as a team.

BLOOM: What’s the most challenging part of your job?

Gabriella Carafa: That I can’t change everything and increase the resources out there. In general I find that services are lacking and I wish there was more I could say or do. It’s hard when families say: ‘It’s not enough, what are we going to do?’ They’ll say ‘How does anyone live on the money you get from the Ontario Disability Support Program?’

I find families and clients want to be heard, they want to feel listened to. I focus on client and family strengths. Families are incredibly resilient. It’s not about empowering families—they already have it inside them. They just have to figure out how to use the skills they already have. They’re already powerful.

BLOOM: What do you like best about your job?

Gabriella Carafa: Being able to see a client and family at their first appointment and then over the next three years watch them become more comfortable with transitioning and building their skills. Sometimes clients will start coming in with their parents and then later they come in alone and if they’re able to do that, that’s what we want. In adult services they need to be able to manage appointments and problem-solve. I’m part of that journey with them.

Read More

BLOOM media roundup

Happy Monday!

Looking for a read that will make you think? Check out the disability and parenting stories we've collected recently. Let us know if we missed a good one! Louise

Forget what you know about disability Channel 4 video

Singer Viktoria Modesta is part of British Channel 4's Born Risky campaign, aimed at challenging viewer stereotypes. She wears 'artistic' prosthetic limbs made at The Alternative Limb Project.

This amazing father created his own school for his injured daughter Viral Nova

When his newborn suffers a severe brain injury after being shaken by a nurse, this father opens a school in New York for kids with brain injuries.

Silence wrapped in eloquent cocoons The New York Times

After spending 35 years in an institution, Judith Scott, who had Down syndrome, was rescued by her twin sister and went on to become a world-famous fibre artist whose work is showing in the Brooklyn Museum.

A teenager with big dreams CTV video

A boy with a rare disease that leaves his skin as vulnerable as a butterfly's wings and in constant pain raises $80,000 to grant wishes for others with his condition. 

And the beat goes on Cincinnati Children's Hospital blog

A music therapist records the heartbeats of dying kids and incorporates them into songs that parents can keep.

The day some of my son's class snubbed his birthday Chicago Tribune

'When my son with autism turned six, only one kid from his class came to his party.'

My son is black. With autism. And I'm scared of what the police will do to him
Medium

'Yes, less than an hour after hearing my son has autism, I took into consideration what it means when he interacts with a cop.'

How to hear voices that are seldom heard Video

Researcher Sara Ryan speaks at the Transforming Patient and Staff Experience Conference at Oxford University in November. Her son Connor, who had autism and an intellectual disability, drowned in a bath unsupervised after having a seizure in a special unit in a British hospital.

North Korea's disappeared: Regime 'performs experiments on disabled people before leaving them to die' The Telegraph

North Korea is 'cleansing' its population by leaving disabled infants to die and sending people with disabilities to a remote village or using them for medical experiments, a defector says.

Why is Reginald Latson being denied the support he needs? 
The Washington Post

A police officer questioned a youth with autism who was sitting outside a library, waiting for it to open. A scuffle ensued. The young man was convicted of assaulting a police officer and is languishing in solitary confinement.

Oversold prenatal tests leading to abortions Boston Globe

Companies are overselling the accuracy of a new generation of prenatal tests and doing little to educate expecting parents or doctors about the significant risks of false alarms.

Read More