A pharmacist who burnt out has a new mission: mental health

By Louise Kinross

Amy Hu is a pharmacist at Holland Bloorview who became interested in children’s rehab after doing a student placement here. She’s been with us for seven years, was the clinical pharmacy coordinator, and is moving into a new role with our quality team. I know Amy from the weekly staff mindfulness sessions offered by social worker Anne-Marie Batelaan. Amy says it was her own experience with burnout that made her want to talk about the importance of staff mental health. ‘I’d like to make staff mental wellbeing a priority in our organization,” she says.

BLOOM: How did you get into this field?

Amy Hu: I fell into pharmacy because I wanted to do something with science that involved helping people. In second year I had a placement here and discovered this amazing place. I learned about the uniqueness of working in a rehab setting. Most people in pharmacy work in an acute-care or community setting, and pediatric rehab is such a niche. The unique part is how we get to follow clients for much longer than in acute-care. That means you really get to know not just the client but the whole family, and it’s very gratifying from that perspective.

I came here after the hospital moved into our new building. The natural light throughout the building, and the idea of bringing nature in, was so different from other older hospitals I’d been in. It's a healing environment.

The clients and families are resilient and courageous and inspire you every day, and the staff are incredible. The breadth of care we offer, and the amount of skill and passion people bring to their work, left a huge impression on my mind as a student. After my schooling and training, there was an opportunity here and I snatched it up.

BLOOM: What is a typical day like?

Amy Hu: There’s a lot of activity happening in the basement. That’s the control hub of medication management in this hospital.

The pharmacists could be rounding with the interprofessional team, reviewing medications with families, calling a community pharmacy to help transition a family back to the community, or helping to wean a client off of pain medicines.

Our technician team could be preparing medicines for our inpatients and adjusting them constantly as they change over time. We also sit on many hospital committees to ensure medication safety and do project work at a higher level. We mentor many students and end up hiring about half of them. So there’s a great variety of clinical and project and teaching work. We also support clinical trials at the hospital.

BLOOM: How many people work in pharmacy?

Amy Hu: There are 10 bodies overall and we have just under three full-time pharmacists.

BLOOM: How did you move from being a pharmacist to your coordinator role?

Amy Hu: I think it speaks to the increasing complexity and acuity we’re seeing in our population, which I feel started about five to six years ago. I realized that the clinical skills I learned in school weren’t enough to serve the clients here, whose needs were shifting. It required more collaboration and problem-solving at a higher level and more leadership skills. So I went back to school for a master’s of health administration while I was working here.

BLOOM: How did you do that?

Amy Hu: It was an incredible program at the University of Toronto that enabled me to take two days off every three weeks, and you carry close to a full-time work load and do courses back to back. It allowed me to bring real-world problems and issues into the classroom, and what I learned I could apply back here. I loved the program and use the skills I learned every day.

Now I’m about to move onto our quality team in a new role the organization has supported. The goal is to support front-line teams on projects related to quality or process improvement. It’s something I'm passionate about, and have done for the pharmacy team as a coordinator, but I haven’t had a chance to work with many other teams. This role will allow me to work with inpatient and outpatient teams across the hospital. I'm really looking forward to meeting and learning from our teams, understanding their work flow and hopefully bringing forth meaningful change.

BLOOM: What is the greatest joy of your work?

Amy Hu: Meeting the amazing people at our hospital. It takes special people to work here, to be a nurse or a social worker or a therapist or a therapeutic clown. It’s incredible to have everyone working together, and that includes the non-clinical staff from departments like information systems, teaching and learning, the research institute and our leadership team.

BLOOM: What is the greatest challenge?

Amy Hu: The greatest challenge is that there’s so much that can be done here and so many well intentioned people, that it’s easy to go overboard.

BLOOM: You mean in terms of staff?

Amy Hu: Yes. These days on the frontline I feel like it’s rare to bump into somebody who is coping really well. There can be a lot of stress and symptoms of burn out. That's concerning. It affects people’s capacity to do the work they love to do. Clinicians are put in positions where they have to say I would really like to do this, but I just physically can’t. How do I choose? That’s a tough place when you’re trained as caregivers to give.

BLOOM: What kind of emotions come with the job?

Amy Hu: All the myriad of human emotions. Like many other people, I have high expectations on myself and feel guilty when I feel like I should be doing more. There’s work stress, and then conflicts between team members can be challenging as well. A couple of years ago it really kicked in for me and I burnt out.

BLOOM: What happened?

Amy Hu: Work was really tough and I had a family crisis on the side. I remember one day sitting in front of my computer, double checking a medication order before it went to the unit, and the words were not registering. I thought to myself: ‘What am I doing here? This is not safe. I need to stop.’ With the support of our occupational health nurse, my physician and my team, I was on stress leave for almost two months.

BLOOM: What did you learn?

Amy Hu: As a clinician, you never intend to get to a point where you can’t work. I really learned my own limits. I’m human and I’m fallible and I need to take better care of myself. I needed to actually learn how to be kind to myself. While I was off, I took the mindful self-compassion course, and that was transformative for me.

BLOOM: That’s the course that our social workers Anna Marie and Dagmara offered to staff here recently.

Amy Hu: Yes. It's amazing that this program was offered here. I did it elsewhere. It helped me to get back to work stronger than I was before—to be more present, and to take time to reflect on what’s important to me, what I value, and how can I bring more of that into what I do. I acknowledged that I needed help from counsellors and mentors. It was a very humbling experience.

BLOOM: What do you do differently now?

Amy Hu: With practice, I can take micro pauses throughout the day and become more aware of my experience. I notice if I’m getting triggered, or if certain emotions are coming up, and I allow them to be there. By pausing, leaning in to the emotions, and befriending them, I find I can respond in a kinder way. 

In the past, I was relentless at pushing myself beyond my capacity. Now I say ‘Let’s take a breath.’ The self-awareness helps to regulate my emotions and I also find it helps me to be with the challenges that other people may be experiencing. Finding inner compassion helped me to be a more empathetic person and to better support the people around me.

BLOOM: I think many staff may feel burnt out, but are afraid to approach someone with what they’re going through.

Amy Hu: That’s why I want to share this story. I think there can be a lot of fear and shame and guilt around recognizing that you may need more support. And it’s not your fault.

The work is quite challenging: we go towards people’s suffering every day. There can be stigma around seeking support, and it’s so important to share the message that getting help is okay. In fact, it takes a lot of inner courage and kindness to go towards our own challenging experiences and emotions.

I had to learn that getting support didn’t take away from my ability to perform—it enhances it in so many ways. I gained so much self-knowledge from this experience and that enabled me to bring a lot more depth and care into my work.

BLOOM: So when you came back from leave, were your hours staggered?

Amy Hu: Yes, it was a very gradual approach over many weeks, and I kept the counselling support on the side. My manager and teammates were very accommodating, and I'm grateful for their support.

BLOOM: Was it hard to find a therapist?

Amy Hu: I started with our Employee Assistance Program, and then they suggested I find someone I can work with over the long term. That has been incredibly helpful. 

As I transition into my new quality role and train my team members, sometimes they ask me ‘How do you do it all?’ I remind them that I continue to seek counselling support for my own wellbeing.

For another person, maybe it’s not a counsellor that makes the difference—maybe it’s a friend or a colleague that you trust who is able to be there for you. Through that relationship and self-reflection, you come to a deeper level of understanding yourself. There are people who care and can support you. No one has to do it alone.

BLOOM: What qualities are important on the pharmacy team?

Amy Hu: The medication safety process is so intricate that you need to be detail oriented. Collaboration is also crucial because it takes the whole team to deliver the right drug to the right person at the right time. One person can’t do it. You need a lot of problem-solving skills. And more and more, we need resilience to change.

BLOOM: You said there’s been a change in the type of clients who come through our doors.

Amy Hu: They’re coming in with more medications, and more acute medications that have higher risk profiles. Our clients are also younger, so they’re more vulnerable in general to side effects of medicines. We’re also seeing a psychosocial complexity with the families we’re working with.

BLOOM: What’s an example?

Amy Hu: We may be supporting families who are involved with children’s aid, or who are trying to cope with huge financial challenges. Finding them drug coverage is becoming more challenging. Our families are pulled in so many directions. Trying to figure out equipment, where will they live, how do they feed their child, and on top of that there’s the medication. It’s a lot for them to manage, and in a short period of time. We work with our social work colleagues and our whole team to try to problem solve.

BLOOM: How do you cope when, despite best efforts of everyone on the team, an error occurs? Because we know that every person in this building has made a mistake at one point or another.

Amy Hu: When medication incidents happen they can be very challenging. We have a good system from a problem-solving perspective. We have a clear process to disclose to the family. As a team, we come together to debrief about where the system could have gone wrong, what the contributing factors were, and what we can do to reduce risk moving forward. From this process perspective we’re very experienced.

The part I find more challenging—and I know other clinicians find challenging—is the emotional impact. It’s the guilt and self-judgment of ‘How could I have done that? How could we have failed?' It’s a tough burden.

No clinician wakes up with the intention to harm somebody. When the stress isn’t so high, these incidents don’t happen. They happen when the system is being stretched, often for a long time, and relies on humans to hold it together, and something eventually falls through the cracks.

These incidents stay with you, and they affect your sense of competence. There's not too much about this in the literature yet. I know from speaking with colleagues at other hospitals that this is something they struggle with.

BLOOM: I know that in the narrative group for inpatient nurses we ran, participants came into the intervention thinking that they were the only ones who struggled with guilt or regret when an error occurs.

Amy Hu: I agree. That’s why I believe we need to place more priority on debriefing, and foster psychological safety in these conversations, so clinicians aren’t living with the guilt and fear by themselves. If you can process as a group what happened, find support in each other and feel you’re not alone, it helps everyone to cope better. I think it takes time, and every person may be at a different stage of readiness for conversations like this.

BLOOM: If you could change one thing about our workplace, what would it be?

Amy Hu: It would be to make staff mental wellbeing a priority in our organization. That could be at multiple levels. We could support teams to have open conversations about challenging experiences that make clinicians feel vulnerable. It could be supporting more mindfulness programs at the hospital, so more staff have access to these tools.

It could also be at the individual level—for each of us to reflect on what wellbeing means to us, what matters to us, and what we can each do to support ourselves and each other. It takes a whole village to run this operation and care for our children and families. We need a cohesive approach to addressing this.

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Women with autism at higher risk for suicide, study finds

By Louise Kinross

Utah women with autism were over three times more likely to die by suicide than their peers without autism between 2013 and 2017, according to the first American population-based study on suicidality in autism. 

The study, published in Autism Research this month, used surveillance data in Utah from 1998 to 2017. The researchers broke the study into four periods of five years. During the first three periods, the risk of suicide between autistic and non-autistic people was similar. But from 2013 to 2017, death by suicide in the autism population was significantly higher than in the general population, and this increase was driven by suicide in females.

BLOOM interviewed lead author Anne Kirby, assistant professor in occupational and recreational therapies at the University of Utah.

BLOOM: Why was there a need for this study?

Anne Kirby: There's been a lot of talk lately that people with an autism diagnosis might be at higher risk for suicide, but most of the research has used clinical samples of people who have come in to a certain clinic, or convenience samples. We didn't have any good population-based research, except for one study done in Sweden a few years ago. 

The Swedish study looked at all causes of mortality in autism, and found people who had an autism diagnosis were more likely to die from suicide than others. We wanted to look at that, and expand that population-based research in the United States.

BLOOM: Were you surprised by your findings?

Anne Kirby: In general, yes. Because autism is less diagnosed in females, and suicide is known to be a less common cause of death for females, we wouldn't have had any reason to believe we would find the higher risk in women. It was consistent with what was seen in the Swedish study. 

BLOOM: I think it's important to emphasize that even though there was an increased risk, the actual number of deaths was small. From 2013 to 2017, seven women with autism died by suicide.

Anne Kirby: Suicide is a rare occurrence, so even though the risk is three times higher, it's still rare. The conventional wisdom is that females are much less likely to die from suicide, but with females with autism, we found that's not the case. 

One of the things that's interesting to me is that for a long time, even mental-health clinicians who worked with this population didn't think autistic people would consider suicide.

BLOOM: Why's that?

Anne Kirby: It's hard to say exactly, but it's possibly related to a general belief about suicide. It's often thought that there are social influences, but there's a long-held misconception that people on the autism spectrum aren't affected by their social surroundings. 

In the past, we weren't as worried about loneliness and the influence of bullying. Certainly, clinicians and the broader research community have really clued into the fact that those are real concerns autistic people have.

So they may face some of the same social influences as the general population, but there's an array of other reasons why they may experience suicidality—biological, neurological, genetic, social. Employment is something many adults with autism struggle with.

BLOOM: What might be the factors that contribute to suicide in women with autism?

Anne Kirby: That's an area that needs a lot more research. There was one study that talked about how camouflaging, or masking or hiding, your symptoms, and trying to fit in, was more associated with suicidality. It also suggested that females might be more likely to camouflage, and to be better at it. So they may have added pressures around fitting in and identity.

The other thing I've been thinking about is how there's a growing awareness of autistic adults and self-advocates. But still, our stereotype is very male. So females may feel especially isolated, even from the autistic community.

BLOOM: Were any of the deaths of women with autism in Utah medically assisted deaths? I know a study in the Netherlands looked at cases of medically assisted suicide that included people with autism.

Anne Kirby: To my knowledge, no. It's illegal here in Utah.

BLOOM: Are there studies looking at the effectiveness of treatments for depression and anxiety, specifically in people with autism?

Anne Kirby: The research on mental health in conditions like autism right now is scant. Most of the research out there is descriptive, looking at the prevalence of conditions, and they're highly prevalent. To my knowledge, there's not much research looking specifically at interventions.

Before we even get to treatment, there's a lot of concern, and hopefully some research being done, on whether or not our evaluation tools are appropriate for identifying depression, suicidality and anxiety in people with autism. The measures we use haven't been validated for people on the spectrum.

I don't think we have a good sense of whether the interventions that have been shown to be successful with other groups are appropriate for this population, or if they need to be tailored. This is a huge priority area for many autistic adults. I hear, repeatedly, that adults with autism have trouble finding mental-health providers who are really familiar with autism.

BLOOM: What are the next steps for your research?

Anne Kirby: In the paper we just published, we had some demographic data about the group that had autism and died by suicide. We're hoping to get medical billing data, so we can have a sense of what co-occurring conditions they had, and what might be potential risk factors, or warning signs, from a co-occurring condition standpoint. We're eager to do that.

We're also eager to look at data on suicide attempts as well. To get a sense of whether people with autism are attempting suicide more often than their peers, or if the difference we saw is really in suicide deaths.

Read our BLOOM story about Sweden's 2016 population-based study on suicide in people with autism. 

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When Bay Luu isn't caring for her grandson, she's exercising

By Louise Kinross

On Friday I looked out my window at Holland Bloorview and saw Bay Luu, 73, pushing her grandson Nicholas, 17, in a wheelchair. A little later I glanced out and Bay was on her own, doing an aerobic step routine on the basketball court—minus the step. After that she did yoga poses and stretches, including sitting on the tarmac with her legs stretched out like a ballerina, and her head, chest and arms touching the ground. Bay has been sleeping here at Holland Bloorview with her grandson Nicholas, who has a brain anomaly called pachygyria, and is recovering from orthopedic surgery. I wanted to find out how Bay incorporates exercise into her days at the hospital, and how it helps her care for her grandson.

While talking to her, I learned Bay and her family spent a perilous 11 days in a fishing boat sailing from Saigon to Malaysia in 1976, after being stripped of their house, store and belongings during the 1975 Communist take-over of South Vietnam. Prior to their escape, Bay's husband Thanh was sent to a remote labour camp while she and her children lived for months with other families in a church and school. "If the Communists had caught us I would have pushed the children into the sea, then jumped myself," Bay told The Ottawa Citizen in a story about her family in 1978 (see photo at the bottom). The year before they arrived in Ottawa as refugees.

BLOOM: Tell us a bit about Nicholas?

Bay Luu: He doesn’t talk, but he walks a little. He understands everything. He will shake or nod his head if you ask him a question, or use sign language or facial expressions. At home he goes to school. I live with my daughter Hanh’s family, so that his parents can go to work during the day. Nicholas loves Thomas the Train. His dad has bought him the whole set. He likes to go to the computer and search for information on each of the characters. When he was diagnosed, the doctor said he was one in a million.

BLOOM: How long have you been living with Nicholas’s family?

Bay Luu: It will be 18 years in January. After we found out Nicholas would have special needs, we sold our house in Ottawa and I came here to help. My husband stayed near Perth, because he doesn’t like the city.

BLOOM: What is your routine at home?

Bay Luu: In the morning I wake Nicholas up at 6 o’clock and help him go to the washroom and brush his teeth and we go down for breakfast. I pack him a lunch. He likes little bits of French toast he can eat by himself, and two yogurt bottles. In the morning I make him oatmeal. At 7:30 the bus comes to pick him up. Then I go for a walk. I come back at around 12 or 1 and cook something. I cook his dinner for a long time so it’s chunky, but very soft. I chop the carrots and the chicken small, and cook them with rice and chicken broth. He comes home at 3:15. At 3:30 he does half an hour of exercise on the elliptical in our basement. That’s when I do my stretches. Then he has oatmeal and a bath and his dinner. We stretch his legs in braces for about an hour-and-a-half in the evening. He goes to sleep at 8:30 when he’s at school. He sleeps with me. 

BLOOM: Does he sleep through the night?

Bay Luu: Yes, he sleeps well.

BLOOM: I know children with his condition sometimes have seizures.

Bay Luu: We are very lucky and he’s had no seizures.

BLOOM: What is your exercise routine at Holland Bloorview?

Bay Luu: I get Nicholas ready in the morning and he goes to recreation at about 9:30. Then I go out to exercise. First I go upstairs to the 6th floor and I walk down to Level zero and up to 6 again, and then I go outside. I do step, stretches and yoga on the basketball court. I have about an hour and a half to exercise, so after that I may go for a walk in the ravine or walk to Metro. At 11:30 I get Nicholas and help him with his lunch. Then he relaxes on his bed with the TV or iPad. In the evening I do the stairs again. I walk up to the 6th floor, then down to level zero, and back to the third floor.

BLOOM: Why is your exercise important?

Bay Luu: I have to move, I can’t sit. I feel better and my knees are better. I used to take painkillers for arthritis, but when I exercise I don’t need to. I’m happier when I exercise. If I don’t walk for two days I feel sad. At home I walk five days a week. I also eat lots of vegetables and fruit and drink two litres of water every day. It helps me stay well and healthy, so I don’t have to take pills or be in the hospital. At my medical checkup this year I didn’t have any problems.

BLOOM: Did you have experience with disability before your grandson was born?

Bay Luu: No, no experience. No one taught me how to take care of Nicholas—by living with him you figure it out. I felt very sad, but if God gives this to you, we have to accept it. It doesn’t help to be sad or angry. I love Nicholas lots and that makes me happy.

BLOOM: How has this experience changed you?

Bay Luu: Before Nicholas was born I was busy at work. I worked for 23 years at a fast-food submarine place. Now my children are grown up and they’re okay, so I’m happy and thank God. I try to help the kids with special needs more than before. If I can help, I want to help.

That’s why I don’t go on vacation by myself. Last year I went to Singapore for one-and-a-half months and brought Nicholas.

BLOOM: By yourself?

Bay Luu: Yes. We stayed with his dad’s family who can help us. A few years ago I went to Vietnam for two months and brought Nicholas. I have a family in Vietnam. It’s hard, but I can’t leave him. I would worry about how he was and whether he’s eating the right food. I will live with him till the last day of my life.

Below Bay Luu (centre) with her husband and three of their children, who arrived as refugees in Ottawa in 1976. The photo is from a 1978 article in The Ottawa Citizen. It notes that at the time of their escape from South Vietnam, Bay's fourth child, a 20-month-old son, had a fever and was left in the care of his grandparents.

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'The people that have the voice are too tired to raise their voice'

This family! If you haven't watched the film Caring for Tor that aired on CBC The National, you must. It fits perfectly with Mental Health Week as it relates to families caring for young adults with complex disabilities and medical needs. 

Caring for Tor is told from the perspective of Stephane Alexis, 24, who has put his life on hold to care for his younger brother Torence. "He's non verbal, he doesn't really have any balance, he's completely dependent," Stephane says.

"A year ago, when Tor turned 21, he graduated from high school, and all the services stopped. So when that happened, we didn't have any support during the day and all of the work kind of fell to my dad."  

With his mother working full-time, Stephane became one of Tor's caregivers. He describes caring for Tor with his parents as being like a member of a finely coordinated orchestra.

The love and dedication in this family is boundless. But the demands are constant, round the clock, and Stephane worries about the future.

"Any kind of long, continuous strain has an impact on you mentally," Stephane says, noting that his friends are focused on their careers and chasing their dreams. 

"I can't do this forever...What will happen if I'm not there to kind of relieve the pressure? Everyone's getting older and the needs are going up and it's kind of breaking the balance. It's easy ignoring these people cause there's no voice. Because the people that have the voice are too tired to raise their voice."

The Centre for Mental Health and Addiction has an excellent campaign designed to remove stigma about mental health, and it certainly applies to the needs of this family: 'My mental health is as important as my physical health.'

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'Take care of yourself first:' A parent's recipe for mental health

By Louise Kinross

Studies show elevated rates of depression and anxiety in parents of children with disabilities. They even show our cells age faster due to high stress.

This week is Mental Health Week in Canada. The Canadian Mental Health Association is running a great campaign called '#GetLoud about what mental health really is.' It includes descriptors like 'It's about feeling good about who you are, having balance in your life, and managing life's highs and lows.'

The Centre for Mental Health and Addiction also has an excellent campaign. It's designed to remove stigma: 'My mental health is as important as my physical health.'

BLOOM is talking to parents to learn about what they do to care for their mental health.

First up is Laura Meffen. Laura’s daughter Emily Kerr, 19, has NGLY1—a neurological condition in which people lack an enzyme that helps the body remove proteins that aren’t working properly. She has complex disabilities and health needs. 

Back in 2003, when Emily was five, Laura wrote a BLOOM piece about walking into a hospital emergency, suicidal, and being admitted for a major depression. At the time, she wrote, she felt she ‘had to live up to that super-mother image…My self-worth was tied to maintaining that image of perfection and doing everything myself.’

This year Emily, almost 20, moved into a full-time residence called Participation House. Here’s what Laura says she’d tell another parent of a child with complex needs about mental health:

“You need to put your family first, as opposed to one child. A lot of anxiety comes from wanting to do everything possible for our child with disabilities. We get wrapped up in physical therapy, occupational therapy, speech therapy, and then we hear about a parent who’s doing this other therapy, and another parent who's doing something different. You want to do everything, but you can’t. It’s impossible. And it’s okay to not do everything. It isn’t healthy, as a parent, to be focused on one child 24-7.

“I’m a big advocate of respite—no matter how you get it. When Emily was younger I hired a mother’s helper. At first, she would play with Emily and care for her while I was still in the house. Then, when I got confident with her, I might leave them and run out to the grocery store. But most often, I went upstairs to have a nap.

“I put Emily in respite at Safehaven when she was 13. It was hard dropping her off, because she would cry. I had to do it in small steps and stages—baby steps. The first time we just visited. The next time we came and dropped her off at dinner time, because her favourite thing was eating. Then we came back to get her in two hours. The next time she stayed over a night. After that she would go for weekends. And then finally we were able to leave her for one week.

“Emily is a homebody and she doesn’t like to leave, so when she recognized we were going to Safehaven, she would often start to cry. But I would call after I dropped her off and the staff would hold up the phone so I could hear her interacting. And I could hear she was having fun.

“Now, Emily is in full-time residence at Participation House, and it was because of our experience with respite that when she turned 18, we found out about Participation House.

“Until she moved, I didn’t realize how stressed I was having Emily in the house. It’s hard not having her here, but it is for my mental and physical health, and for my family. I had to look at what was best for the whole family, including Emily’s brother Tyler.

“It was when the mother of another boy Emily went to school with passed away that I realized I had to take care of myself and I had to take care of the whole family.

“A long time ago, another person told me ‘You need to take care of yourself first. And then, when you’re good, that will take care of your relationship with your spouse. And if that is good, it will trickle down to your children.’ As opposed to what we usually do—which is put our children first, then our spouse, and then ourselves.

“Because we had put Emily in respite since she was 13, when we moved into the adult system, we sought out respite and she went to Participation House. On the Developmental Services Ontario form, I filled out that my vision was that Emily would live in a full-time residence. We were very lucky when a spot became available. They already knew Emily well, so they didn’t even have to go through all of the interviews.

“Respite is very important. It gives you some time with your family, so that you’re not feeling overwhelmed all the time.

“Sometimes, when Emily was younger, we would put her in respite and we’d come home and just crash. Then we could spend more time with Emily’s brother Tyler. We got used to the idea that she was comfortable there. We did our due diligence and looked into these places. It wasn’t always the best thing for Emily, but using respite was the best thing for our family.

“Often, parents like us are so stressed out that we don’t exercise, we don’t eat right, and we don’t sleep. That can make us more susceptible to some diseases.

“I reduced the amount of volunteering I was doing, even though it makes me feel good. I stopped doing things that I felt I had to, and only did things I wanted to do.

“Right now I’m able to go to yoga, and I have the energy to actually do it.”

Laura says that putting her mental health first has changed her life and made her whole family happier. What strategies do you use?

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Raising a disabled child in an abled world takes a toll

By Louise Kinross

Today is Bell Let’s Talk day and we want to join the dialogue by talking about mental health and parenting children with disabilities.

Over the last decade, studies show that parents of children with a range of disabilities like cerebral palsy, autism and Down syndrome have higher rates of depression and stress than other parents.

This 2013 Australian report provides a good overview of our unique mental health challenges: Enhancing support for the mental health of parents and carers of children with disability.

Consider some of these contributing factors. 

Parenting a child who is devalued and marginalized in our culture can be heartbreaking.

Parents of children with disabilities often have to fight to have their children included in everyday activities and regular school programs. Advocacy is time-consuming and emotionally exhausting. It's sad when your child struggles to make friends.

Parents may not be able to get the therapies their child needs covered publicly. Raising a child with a disability costs more. Often times, one parent needs to be at home.

Some parents have experienced many traumatic, life-and-death situations with their child. Others have been with their child through dozens of painful surgeries and gruelling months of rehabilitation.

Lack of home-care nursing and the need to care for a child around the clock can be physically exhausting. See Parents of ventilated kids risk own health due to sleep loss.

It’s sad when many people don’t delight in your child the way you do, and see their beauty, value and wholeness.

Recently, we’ve seen some exciting studies about interventions that can reduce stress and depression in parents like us. For example, in the last year we’ve written about three CAMH studies showing the benefits of mindfulness, self-compassion and acceptance and commitment therapy. The most recent: Accepting emotions reduces depression and stress in parents and Self-compassion may fuel parent resiliency. In 2014 there was this Pediatrics study: Peer-led groups treat distress in parents of kids with autism.

Holland Bloorview's Dear Everybody campaign aims to help the public understand the experiences of disabled children and their families, and to reduce stigma.

In light of Bell Let's Talk, I asked parents on our BLOOM Facebook page this question: “What would you like the world to know about mental illness and parenting children with disabilities?”

Here are some of the responses (edited for space).

Post-traumatic stress disorder is now recognized in first responders. Living through repeated life-and-death situations with your own child takes a toll.

The world should know that we worry constantly and that it can be exhausting. I love our daughter to death and she brings us so much joy, but the stress and worry about her future can be debilitating. Except—it actually can’t be, because you just carry on. You have no choice. I worry that this reality takes a toll.

Hopes, dreams and fulfillment for our children are waylaid for doctor appointments, constant phone calls about denied necessities, hospitalizations, Emergency visits, sleepless nights, loneliness, lack of freedom, but most of all guilt. Did we do enough? What did we forget? Are we paying enough attention? The list is endless, but at the top of that list should be FEAR. Who will be there to carry on for our child when we can’t?

I have never gotten over the trauma of our daughter’s early birth and the subsequent turn she took after birth that led to her disability.

We may always look like we have it together, but placating us with ‘You seem to be very strong’ pushes us further into the dark and away from help. We need proper assessment.

Don’t leave it till we fall off the rails. Studies show that parents like us have higher rates of depression and anxiety than other parents.

I took a physical for insurance and was asked ‘Why are you on an anti-depressant?’ I simply stated: ‘I’m a special-needs parent and I’m always advocating, praying, teaching, learning, and I must cope somehow.’

There is the everyday worry I have for her health and wellbeing, both physical and mental. I constantly worry about what happens to her in the future. Will I be well enough to take care of her, or will she be able to live a somewhat independent life? Oh, and let’s not forget the worries of possible abuse of my girl—physical, mental and sexual. Our lives are mentally exhausting!

Please leave a comment about your experiences with depression and anxiety and strategies you use to help yourself stay healthy.

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Share your mental health story on Bell Let's Talk day

By Louise Kinross

With Bell Let's Talk day coming up Jan. 31, I'm gathering comments from parents that BLOOM can post anonymously on social media that day.

What would you like the world to know about how raising a child with a disability in our culture affects your mental health?

More than a decade of research shows parents of children with a variety of disabilities have higher rates of depression and anxiety than other parents.

What are your mental health needs, struggles, hopes?

I'm looking for short comments that we can post anonymously on BLOOM and its social channels on January 31.

Leave a comment here or e-mail me at lkinross@hollandbloorview.ca. Thanks!

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Accepting emotions reduces depression, stress in parents

By Louise Kinross

Mothers of children with autism reported significant drops in depression and stress and improvements in physical health after participating in acceptance and commitment therapy (ACT), according to a study published in the journal Mindfulness today.

Twenty-nine Toronto mothers filled out questionnaires before and after the workshops where they learned to accept—rather than avoid—difficult parenting emotions, think more flexibly and commit to their values. 

The falls in depression and stress and gains in physical health seen four weeks after the first two parts of a three-session workshop were maintained at a follow-up eight weeks after the program ended.

The mothers had children with autism aged three to 22, and one-third had more than one child with autism.

More than a decade of research shows parents of kids with disabilities like autism have higher rates of stress and depression and more physical problems than other parents. But few studies have looked at interventions to help parents.

The new study was conducted by clinicians and parents from the Centre for Addiction and Mental Health, University Health Network, Surrey Place and Extend-A-Family.

The team concludes that ACT may be effective in improving mental and physical health in mothers of children with autism.

The groups were facilitated by one father and two mothers of children with autism who were trained to lead the intervention. BLOOM interviewed Lee Steel, who ran the groups with Kelly Bryce and Dr. Kenneth Fung.

BLOOM: What is ACT?

Lee Steel: It’s different from anything I’ve ever done, and I’ve been doing workshops for 22 years. Usually the focus is to get you to be a better parent by giving you another skill set. But ACT puts the focus on me, as a parent, and my own wellbeing. It’s about caring for the caregiver. It gives me a set of tools to go home and help me look after myself better.

At the core is the idea of psychological flexibility—so that as parents, you create a small gap between reacting and thinking about something in a more flexible way.

My son Eric is 26 now. I was feeling quite exhausted from years of advocacy. I was burning out, and reacting in ways I didn’t want to. ACT’s idea of putting the oxygen mask on myself first—rather than my child—was really applicable to me.

BLOOM: The paper lists one of the principles as acceptance.

Lee Steel: Yes, this is about being able to hold the emotions we’re feeling—including painful emotions—instead of avoiding them, pushing them down or saying ‘I shouldn’t feel this way.” It’s about holding everything with compassion. It’s accepting the way that I am, and the way that I’m feeling.

Sometimes it may be holding two emotions at the same time. Perhaps I want Eric to be independent and accepted and appreciated, but I feel really sad that it’s so hard to find services in the adult world, and to find employment that builds on his strengths.

So I simultaneously desire his independence and hold the thought that it doesn’t come easily, and I’m really sad about that. I don’t run away from those painful feelings.

I don’t do what I did when he was younger—which is to tell myself ‘I just need to apply myself more, work harder, make more calls, do more.’”

BLOOM: I can certainly relate to that feeling that somehow I can never do enough. That the world is telling me that my child is not enough, and that I’m not enough.

Lee Steel: The idea of acceptance is not only about my thoughts and emotions. It’s also about accepting my child the way he or she is. I don’t know what it’s like with other disabilities, but in the autism community, you can get a mixed message that if you work really, really hard, you can change the outcome of your child’s life. That’s an incredible burden.

I have grief now about how I can’t get all of those earlier years with my son back. Instead of slowing down and enjoying the moment, my focus then was on doing more and more and more, and working harder and harder and harder.

BLOOM: I think those ideas of ‘fixing’ disability run through our culture, which is very focused on self-improvement.

Lee Steel:  Parents get into comparing their child to this fantasy outcome that isn’t even real. And that negates who my child is and who I am. ACT gets you to look at 'Whose value is this?' It may be a value that's really strong in our culture, but would this be my value?

In ACT, we ask ‘Are we treating ourselves as a problem to be solved, or as a process to be lived and appreciated?’ One slide we show asks ‘Are we a math equation or are we a sunset?”

BLOOM: Another part of ACT is called cognitive defusion.

Lee Steel: That involves separating ourselves from our thoughts. I know in my experience as a parent, I often made a thought into a fact. In ACT, we learn techniques to help us hold our thoughts more lightly, instead of holding them as the truth.

ACT encourages us to see ourselves as an observer of our experience. The way Dr. Fung explains it is he holds one hand open, palm up, and puts the other hand inside of it. ‘We’re the holder, we’re not the content,’ he says. ‘Our experiences can come and go and change, but we’re the flexible holding self, rather than fusing with the contents.’

So instead of beating myself up because I wasn’t as patient as I would have liked, I can say: ‘Okay, I'm having that thought again. I’m tired. What do I need? Maybe I can go to bed earlier. Maybe I need to have a walk. Instead of judging and hurting myself more, I can be kind and compassionate with myself. If I’m compassionate with myself, that will ripple through to my child and to seeing everyone as doing the best they can.

Before ACT, when I was so hard on myself, it just made me more brittle towards other people.

BLOOM: I love that idea of being the container of our thoughts, not the thoughts themselves. How do values factor into this therapy?

Lee Steel: We do an exercise where each parent chooses four values that are important to them. Then they look at their values to see whether their actions are aligned with them. As a parent, this helped me reflect on aspects of my life that I’ve put on a shelf or forgotten about.

For example, let’s say one of my values is self-care. But I’m not doing anything about that. I’m putting everyone else first, I’m not getting enough sleep and I’m not eating right. ACT invites us to think of an action that would move us closer to that value.

We think of a value as being like a north star that can direct you. It’s not about goal setting. It’s about reflecting and asking, ‘If these are my values, are my actions moving me towards them, or away from them?’

BLOOM: Why was it important to have parents of children with autism lead the workshops?

Lee Steel: It gave us a 'short-hand' early on. We didn’t have to create safety because parents knew that I got what they were talking about. You’re not talking about a script, you live it, too.

BLOOM: It's an instant credibility. The study is about parents of children with autism, but I imagine parents of kids with any kind of disability could benefit?

Lee Steel: Yes, the overlapping struggles are the same, no matter what the diagnosis. The last group we did was a mixture of parents with children with different disabilities. My hope is that this work can influence parents at a much younger age than me. I wish I’d had it much earlier on.

To learn more about acceptance and commitment therapy, watch this excellent video or contact Dr. Yona Lunsky at Yona.Lunsky@camh.ca. 

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Self-compassion may fuel parent resiliency

By Louise Kinross

Greater self-compassion was related to less stress and depression in parents of adults with developmental disabilities, according to a study in the Journal of Applied Research in Intellectual Disabilities.

The findings are based on self-report measures of 56 Toronto parents who attended one of two six-week groups as their children waited for services after leaving high school. One was a mindfulness group where they were taught to pay attention to their feelings and thoughts in an accepting, non-judgmental way. The other was a group providing information and support on getting services, many of which are wait-listed. One-quarter of the adult children didn't have anything to do weekdays.

The paper defines self-compassion as “being touched by and open to one’s own suffering, not avoiding or disconnecting from it,” and “generating the desire to alleviate one’s suffering and to heal oneself with kindness.”

The two parent groups didn’t focus specifically on self-compassion, but the mindfulness group included learning how to do a loving kindness meditation that begins with a focus on the self.

The current study found self-compassion was negatively correlated with depression and stress—even after controlling for parents’ perceived caregiving burden; for parents of children with autism, who sometimes have more stress and depression than parents of children with other developmental disabilities; and for neighbourhood income.

“Self-compassion is something that matters and that we need to pay more attention to,” says investigator Dr. Yona Lunsky, a senior scientist at CAMH who partnered with Developmental Services Ontario and Community Living Toronto to run the groups. “Parents are very compassionate when it comes to their own kids, but do they have that same compassion for themselves?

“Often, these parents feel inadequate. Why do they feel inadequate? Because of all of the things they’re supposed to be doing to make sure their child is okay. Sometimes those things work, and sometimes they don’t, and sometimes that’s hard on parents. They may experience inner psychic pain, or the pain of the child or spouse or other siblings.”

Parents’ first reaction may be to dismiss that discomfort. “We don’t have time and we’re scared to look at what’s going on in ourselves—that we are suffering. We think ‘If I’m going to be strong, I won’t pay attention to that, and I’ll keep going.’ But if we’re disconnecting and pretending it’s not there, we’ll never relieve that suffering, and our approach will eventually be harmful.”

Yona likens it to an athlete who continues running on an injured knee. “You have to notice what’s going on when you’re in pain, so you can treat it with gentleness and love and care.”

Parents often feel an automatic sense of compassion for their child, but don’t extend the same kindness to themselves. “Maybe instead of berating yourself because you did something wrong, you can forgive yourself, or notice how you’re experiencing it, or just be gentle. It’s about gentleness.”

Yona notes that there’s a body of literature on self-compassion in the general population, but work looking at its role in parenting children with disabilities is early and emerging.

“We had a sense of self-compassion's importance for parents from past research, but this is the first study to demonstrate its association with mental health for parents of adults with developmental disabilities," says Suzanne Robinson, a graduate student at York University who was lead author and analyzed the data for the study. Suzanne is doing her PhD in clinical developmental psychology and worked as a summer research student at Holland Bloorview in 2010.

Yona says future research could look at understanding why some parents of children with disabilities are more self-compassionate than others, and how to foster self-compassion in this population.

You can contact Yona at Yona.Lunsky@camh.ca.

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Assisted suicide study questions its use for depression, autism

By Louise Kinross

A study published yesterday about doctor-assisted suicide in the Netherlands for patients with depression and other conditions, including autism, raises alarming questions.

The JAMA Psychiatry study looked at 66 cases between 2011 to 2014, including two involving people with autism. Depression was the most common diagnosis.

The practice of helping patients to die was initially limited to those with terminal illness who were mentally competent and had intractable suffering. In the Netherlands and Belgium it's been expanded to include psychiatric patients.

The researchers raise several red flags about their findings. 

In one-quarter of the cases, doctors disagreed about whether criteria in the areas of 'unbearable suffering,' competency and futility had been met, but the deaths proceeded.

Most patients were women (70 per cent) and in over half, doctors cite loneliness as a factor. For example, "The patient indicated that she had had a life without love and therefore had no right to exist" and "The patient was an utterly lonely man whose life had been a failure."

Distorted, all-or-nothing thinking is common in depression, but these statements appear to have been accepted as fact.

In 56 per cent of cases, patients refused at least some recommended treatment, calling into question whether the condition was in fact intractable. 

In more than a quarter of the cases, patients sought help from a doctor who wasn't a psychiatrist and hadn't been involved with their care. Typically, this was a physician with a mobile clinic funded by a local euthanasia advocacy group.

The scientists conclude that the granting of requests for assisted death "involve considerable physician judgment, usually involving multiple physicians who do not always agree, but the euthanasia review committees generally defer to the judgments of the physicians performing" assisted death.

In their discussion, the authors note that in a recent study of 100 people requesting assisted death from a Belgian psychiatrist, 19 per cent had autism.

A JAMA Psychiatry editorial that runs alongside the Netherlands study finds the results troubling.

"Will psychiatrists conclude from the legalization of assisted death that it is acceptable to give up on treating some patients?" Dr. Paul Appelbaum of the New York State Psychiatric Institute asks.

"There is also understandable anxiety about the secondary consequences of an assisted death option for people with mental disorders, including inducing hopelessness among other individuals with similar conditions and removing pressure for an improvement in psychiatric and social services."

Indeed, given that loneliness was a common theme, Dr. Appelbaum questions whether assisted death "served as a substitute for effective psychosocial intervention and support."

The study authors note that requests for assisted death to relieve suffering from depression and other psychiatric conditions require special scrutiny, given that these conditions "contribute to suicides, can sometimes impair decision-making, and are stigmatized."

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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 naïve 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.

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Think other special-needs parents have it 'together?' Think again

By Louise Kinross

When Autism Comes To Roost: A Family’s Journey From Denial to Acceptance is a new parent memoir out next week.

Canadian psychologist Alicia Hendley writes candidly about her son Max’s diagnosis of autism and how it caused “the ground [to shift] under me. Suddenly unable to juggle the roles of therapist, wife and mother of four with anything resembling grace, I stumbled head-first into a major depressive episode, which was quickly followed by a diagnosis of bipolar disorder.”

BLOOM interviewed Alicia to find out how being a psychologist influenced her response to her son's diagnosis. This is the perfect interview for any parent who assumes that every other parent of a kid with a disability has it "all together."

BLOOM: The title of your book includes 'from denial to acceptance.' How did you respond when you learned Max had autism?

Alicia Hendley: My initial response was complete denial. The daycare filled out questionnaires on development at 16 and 24 months and both were very clear that Max was behind in every area. As a psychologist I told my husband that the surveys weren’t valid because they were supposed to be parent-completed questionnaires and not based on teacher feedback. ‘They don’t know what they’re talking about,’ I said. ‘He’s just this interesting kid and he’s very sensitive.’

I did one of those questionnaires over in red pen and changed all the answers. It wasn’t until my youngest son started catching up with Max that it became more clear, around Max’s third birthday.

What jumpstarted the need for an evaluation was his absolute need for routine and ritual. We had to do the same route home from daycare and if I changed the route or if I said ‘that’s the fire house’ instead of ‘that’s the fire station’ he’d have a meltdown and take off his shoes and throw them at my head.

When I heard the word ‘autism’ from a child psychologist it was absolutely devastating. It was like I’d known but I didn’t know. And my view of that word is different now, but at the time it was devastating.

BLOOM: In a short span of time Max receives a diagnosis of autism and you receive a diagnosis of severe clinical depression.

Alicia Hendley: During that period I was working full time and I also had two older children and a baby. I counselled students at the University of Waterloo, so I was dealing with people who had their own distress and needed my help and that took a lot of emotional energy.

Max wasn’t in the child services system yet and there were wait lists. Nothing was happening and I didn’t know who to call. I’d leave each morning and he’d be screaming and refusing to put any clothes on and hitting himself. I’d cry driving all the way from Guelph to Waterloo. So my mood was steadily going down.

At first I tried to ignore that I was getting depressed. I wasn’t sleeping and I was losing weight. At lunch time I’d be crying in my office. But it wasn’t until one day when I opened a professional e-mail and realized I couldn’t read it—it was like a different language—that I called the doctor. I couldn’t even speak. 

They had me come in that day and placed me on leave. The book is about my journey trying to get help for Max at the same time I was trying to get help for myself and trying to be a mom and a wife. Writing was an outlet for me and I initially began journaling.

BLOOM: What was it about Max's autism that contributed to your depression?

Alicia Hendley: I was in denial about Max but I never felt shame about him. I got depressed because I had no idea what to do or how to help him. I don’t worry about whether he’ll go to university or fall in love or not. I worry about any type of future where people could potentially hurt him and that family and close friends wouldn’t be there to buffer that. Will there be people in his life when he’s older that accept him for the person that he becomes? That keeps me up at night thinking about when I’m gone or my husband is gone.

BLOOM: How did being a psychologist influence your response to Max’s diagnosis?

Alicia Hendley: While I didn’t feel ashamed about Max or his autism, I did feel ashamed about my depression. I was a psychologist: ‘I know what to do. How come I can’t fix myself?’ I hid my psychological problems from anyone outside my immediate family. My expectations for myself were so high that they slowed my path to recovery. Even though I would never feel that a client of mine was weak in any way, I thought I was weak. I was taking medication and it was hard and I was doing therapy and it was hard. There was shame about me being depressed and ‘why can’t I hold it together?’

BLOOM: How did you cope with your own issues and Max’s?

Alicia Hendley: Once we were hooked into the system there was a lot to be offered. We went to KidsAbility and they had a lot of services before school started. Emotional regulation is Max’s biggest difficulty. When Max was in a meltdown it felt like a storm. And when he was littler if he would hit himself that was something I could hardly bear to see.

The occupational therapist had me stay in the room so she could teach me ways of helping calm him down. I learned a deep pressure hold I could do and that was huge. It didn't help my mood—once I got in that depression I was in it—but I did start to feel more hopeful that there were ways to help him. We did a number of rounds of ABA, but here that just means a couple of hours a week. We never got into morning-to-night services. He still got to be a kid.

BLOOM: Did anything help your mood?

Alicia Hendley: We did a program called Stay and Play where children with disabilities were paired with typical kids of the same age to play, while their moms received education in another room. Every week they had a topic for parents, but it quickly became clear that the mothers were most interested in talking with each other.

We were all isolated and we wanted to connect. We would complain about things. We would commiserate. We would laugh and talk about our lives in general. We all ‘got it’ when a mom said that if she hadn’t packed her child’s orange spoon there would be hell to pay. We got that this wasn’t a bratty kid, but a kid for whom the world seems very unpredictable and having an orange spoon makes it less scary. I felt a huge sense of relief in that group and that maybe I could be the mom I wanted to be.

BLOOM: What advice would you give a parent who’s struggling with their child’s diagnosis?

Alicia Hendley: I needed to have a professional outside the family to talk with, a good solid therapist who was familiar with working with families with kids with disabilities. The sooner parents do that, the better. My husband and doctor pushed me to see a social worker and I thought 'What's she going to do that I don't know?' But she was so beneficial and helped me so much.

The first thing I would tell new parents is 'let yourself feel whatever you feel and it's okay to grieve. It doesn't mean you love your child any less or are a bad mother.' I don't believe there are any bad feelings. If you instantly try to be happy or accepting it may be artificial. I needed medication. Not everyone needs medication. 

One of the best things is physical activity. It's been shown that walking every day is as good as certain types of medication for mild depression. You need support from family and friends. Maybe they don't understand about your child's special needs, but perhaps they can support you to have some time to yourself.

Journaling helped me. I work really hard on taking care of myself now. Once my little boys are in bed, I collapse for a few hours. I read, spend time with my husband or watch mindless TV to recharge. I used to try to fill all of those hours with things that needed to be done. Self-care is important: taking that bath, having that scented lotion or special snack or listening to beautiful music.

BLOOM: Was there any kind of therapy that your social worker did that was helpful?

Alicia Hendley: She'd let me vent and then she would frame things in a slightly different way and it was really about self-acceptance. She was accepting of me and none of my feelings were 'bad' and I wasn't a ‘bad’ mother or person. 

She helped me see things in a less extreme way and to catastrophize less. She talked a lot about caring for yourself and being gentle with yourself. She asked 'What are the moments that you love with Max?' I'd be wanting to talk about a horrible meltdown, and we would talk about it. But then she'd say 'What about the next morning?' and I'd remember that Max and I woke up at the same time and snuggled on the couch.

BLOOM: What helped you accept autism?

Alicia Hendley: Reading more of what autistic adults have to say about their experience. Initially I read up on Autism Speaks but it didn't help me in terms of acceptance. The message was 'Oh no, this is a tragedy.' I see my son, and when he's not struggling with a meltdown, he's not a tragedy. I acknowledge that yes, he needs supports in different areas. I don’t pretend he doesn’t.

I started getting asked a question that many parents get asked: 'If there was a magic pill that would take away the autism, would you give it to Max?' I really thought about that question. I read these heated debates on Twitter about a child hidden beneath the autism, but my experience is no, Max wouldn't be Max if he wasn't autistic. There's an autistic boy in front of me and it's part of the wiring of his brain and it's who he was, I believe, inside of me. If I took away the autism I wouldn't have this child and that would be a tragedy.

As I began to read more from adults writing about autism it helped me toward acceptance that this is a difference. There are challenges because whenever you're a minority, in terms of being different, there are challenges. If stimulation can be that overwhelming it can be a disability and you need to learn ways to cope.

BLOOM: Did you ever consider not sharing your journey with depression in your writing?

Alicia Hendley: I remember the first time on my blog when I wrote that I had a mood disorder and pressed 'send' I felt like I wanted to take it back. I felt horrible that people would know that I wasn't just this great mom trying to help her son, but that I have struggles too.

The initial draft of the book was all about Max, but it felt like so much was missing. Not including any of that felt false and it also felt too much like 'Look at me, I'm this great mom.' But I definitely didn't have it all together. And many parents don't. They grieve, they second guess themselves, they make mistakes.

BLOOM: Why did you decide to write the book?

Alicia Hendley: I was working as a psychologist when Max was diagnosed, and had years of training, and yet I felt completely lost and didn't know what to do. That made me wonder about other parents and how isolated they must feel. On my blog, parents wrote about feeling like they’d stepped off the world: people didn’t understand, family didn’t understand. I hoped the book could be helpful to other parents, especially the not-so-positive parts in the beginning where I was clueless and helpless.

BLOOM: Did you return to your job?

Alicia Hendley: No. I know that I invest too emotionally in my clients and that would put me at risk for getting depressed again. It’s still a bit hard for me when people ask ‘Oh, how come you’re not back at being a psychologist?’ It’s taken a long time and I don’t think I’m completely over the shame. But I’m getting there. I’m still working on self-acceptance.

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