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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Feeling judged as a parent? Read this

By Jessica Geboers

Canadian parenting expert Ann Douglas spoke with BLOOM about her new book Parenting Through the Storm—a collection of strategies for raising children with mental health, behaviour or learning challenges, and maintaining your own health and happiness in the process. It’s Ann's most personal book to date (see above with her husband and four children). Each of Ann’s children has struggled with something, including bipolar disorder, depression, anorexia, Asperger syndrome and ADHD.

BLOOM: What made you want to write this book, particularly at this point in your career?

Ann Douglas: I remember thinking at the time, when my kids were going through such a difficult time, how it seemed like a lot of mainstream parenting books just didn’t really speak to me. I used to get infuriated by magazine articles that would say something like: ‘Better behaviour from your child in 30 days.’ That kind of article would make me crazy because it felt, to me, like the ‘Thinner in 30 days thing;’ it was unrealistic and didn’t apply to everyone. It reminded me of the kind of advice that sometimes you'd get from a well-meaning friend or relative who’d say ‘Well, tell them how to behave.’ It's like ‘Well, honestly, you think we haven't tried that? They're having a really hard time. I think you're not understanding the extent [to which] we're struggling, and the fact that we've tried everything we can think of.’

I wanted to write a book that would help parents to feel a little less alone and a lot less judged. So that was sort of my goal. In terms of why I decided to write it now: back when we were struggling, I was going through such a hard time I could hardly write a grocery list. I was not in a position to be able to look at things analytically and to be able to go into the problem-solving mode, because I was feeling stressed and overwhelmed by the situation. I think I needed to have a bit of time so that I could see that my kids could come through the other side, they could make it through the storm, and that we could thrive as a family. Only then did I feel like I could sort of start to think through what was effective, what worked for us, and then do the research to find out what worked for other families, and what strategies research was identifying as helpful.

BLOOM: One of the key themes is that in order to support your child who is struggling, parents need to take care of themselves. Is this a new idea?

Ann Douglas: No, I don't think it is. But I think that it’s a message that parents can’t hear often enough. Because you’ll say, ‘yeah, yeah, yeah, I know I really should be getting sleep or exercising or whatever, and I will once my child is doing this better, or my child gets past this milestone.’ Then you keep postponing that time of self-care and you can't do that indefinitely or you become totally depleted and burned out. I say this from personal experience. One of the reasons I'm so passionate about this stuff now is because I really did sort of hit the wall: I wasn't sleeping well. I wasn't eating well. I gained about 100 pounds and I had to really work hard to lose that weight.

BLOOM: For parents who feel overwhelmed with the demands of their child, how can they start to care for their own mental and physical health?

Ann Douglas: Sometimes it’s just little wee tiny things, like if somebody offers to help in some way letting that person help as opposed to going ‘no, no, no, we're okay. Don't worry about it.’ People want to help, so accept those offers because they can only help to make your life easier. As long as it’s not a high-maintenance person that's going to come in and start making your life miserable. We’re talking about lovely friends and family who do everything from fold laundry, run errands for you, or stay at your house with your child while you go for a walk around the block if that's all you feel you can manage at first. Because it really is very, very stressful and, I think, it's the emotional toll: the fact that your brain is still working away at solving the problems and worrying about your child 24/7. [For example], if you wake up in the middle of the night it can be hard to get back to sleep because you're feeling so worried and overwhelmed.

Looking for little ways to inject some self-nurturing or some fun into your day [is also important]. Even if it's just, when you get a momentary lull, to flip through the pages of your favourite magazine, or having a cup of your favourite tea, and connecting with people who support you. Whether it’s firing off a quick text message to your best friend saying this wonderful thing happened today, or this incredibly frustrating thing happened today. Just having an outside connection that can say, ‘you know what, you're doing a great job and you just keep doing that.’

BLOOM: Why is it so hard for parents to take care of themselves?

Ann Douglas: I think a large piece of it is that you know your child so well, and you’re into such a groove or routine with your child, that you worry: if I have a child who has autism, for example, [who] doesn't respond well to changes in routines, if I go down the street to have coffee or lunch with my friend and somebody else is here they're going to do things a different way and my child is going to find that challenging. And yes, this is true, but if you look at the cost-benefit analysis, maybe having a parent who feels refreshed and can take on the day is worth a little bit of upset. Plus you want to encourage your child, over time, to work on flexibility, so that can be one way to do it.

I think to realize that it is hard; it’s not as easy as just walking out the door. There’s so much more planning and worrying and thinking involved. But I know [that] so many parents, once they take that step, they say, ‘Why didn't I do this years ago?’ Because they really feel that it has made that much of a difference in their ability to cope and not to feel flattened and depleted all the time.

BLOOM: What do you think happens if parents don't make themselves or self-care a priority?

Ann Douglas: They get really burnt out and really depleted and their physical health can suffer. Their mental health can suffer. They can't be the kind of strong advocate for their child that they want to be. They could be really grumpy and unable to focus on big-picture parenting goals, but get caught up in the emotion of the moment because they [don’t] have any self-control resources left.

BLOOM: In the writing of this book you interviewed other parents and experts at length. How did you decide what to include?

Ann Douglas: Well first of all, whenever I write a book I tend to get a lot of input from parents. So I put out a call through all my usual channels asking if people would be willing to be interviewed over a period of months about their family's experiences. I had about 50 families step forward. I interviewed them via a series of eight questionnaires that were sent out over about two to three months. It was probably about eight hours’ worth of work per family answering my questionnaires. I'm hugely grateful for the time and effort they put into that because what I walked them through [was] all the different stages: What was it like for you when you didn't know what your child was dealing with? What was it like going through diagnosis and treatment? What are your hopes and dreams for your child? What is your child's life like now? So that I could write a book that would cover those different chapters in the family's journey.

In terms of the researchers and the experts, I did a huge amount of research. I read about a thousand different journal articles, about 40 books, and an awful lot of online research to find top Canadian researchers who would have something helpful to say to families. Luckily, almost everyone I asked for an interview managed to fit it in, including very, very busy people who were flying across the country to speak at conferences. I'd get them booked eight weeks in advance for 15 minutes on a Friday morning. But I managed to get a lot of really good information and to get them to sort of boil down in practical ways what this could mean to make life better for parents who have a child who’s struggling.

BLOOM: Were you surprised about how many families were willing to share their stories?

Ann Douglas: I was surprised at the depth and how much they trusted me. They told me very intimate and personal and painful times in their lives and they trusted me to portray their stories in a way that honoured themselves and their children and their struggles as opposed to judged. They made themselves vulnerable and that takes a lot of courage.

BLOOM: What do you hope parents take away from the book?

Ann Douglas: I hope that parents emerge with the feeling that they’re not alone and that they're doing the best they can in a really difficult situation. I think it's so important to remind parents to treat themselves with the same kindness they would extend to a friend who’s struggling. So in other words, we're talking about self-compassion. Because self-compassion is life changing and if I can just spark that idea in people's minds, of being a little kinder to themselves, they'll find it so much easier to deal with the day-to-day challenges of what they're facing in their families.

BLOOM: And professionals, what do you hope that they take away?

Ann Douglas: I hope professionals who read the book get a sense of how hard it is for parents and the fact that parents really are doing the best that they can. That way, professionals may be less inclined to judge or assume they know better and recognize that the parent is the true expert when it comes to their child and their family situation. If parents and professionals can work collaboratively, sharing the same goal of helping the child, amazing change can happen.

BLOOM: There are many families mentioned in the book, including your own, who have several children with mental health, behavioural and neurodevelopmental challenges. Is this common?

Ann Douglas: It is. Often a lot of things have some kind of genetic basis and we know that there’s usually a mix between genetics and the environment. So it’s not exclusively genetic, but you know there’s going to be a whole bunch of genes popping up in different family members, so it’s not unusual at all for there to be people that share the same diagnosis or have related diagnoses. Maybe one person has problems with anxiety, and somebody else with depression, and somebody else with ADHD, and so on.

BLOOM: Which can make it even more challenging?

Ann Douglas: It can, especially if the parents also share the diagnosis. Maybe [you] have ADHD and are trying to parent kids with ADHD and at first it can feel like ‘oh wow, this isn't going to work very well’ but then realize that you've gained a lot of wisdom and insight living your life and figuring out how to manage your particular challenge so you can share some of those insights with your child. You can also be more understanding because you know that these challenges are for real, they're not something made up and it’s not just a child trying to be difficult or act up for the sake of acting up. There’s a reason for the behaviour.

BLOOM: Was there anything that you learned while working on the book that was particularly new, interesting or surprising given your experience?

Ann Douglas: The information about self-regulation was something I hadn't done a lot of reading about until I started doing the research for the book. The idea that we can both boost our positive emotion and reduce our negative emotion just by making choices in our daily life; that was mind blowing for me. Just learning how taking a couple of walks a day can help me to manage my anxiety. Also, the piece about self-compassion: that it’s so important to change from the self-critical channel in your head where you hear mean things being said to yourself about yourself, to a much more self-compassionate kind of stance where you remind yourself that you're doing the best you can in a difficult situation. Then trying to think what you can do to make life better.

BLOOM: How did you decide what language to use to describe conditions?

Ann Douglas: I want to be as inclusive as possible so that everybody can sort of see himself or herself in the book. I also believe when we say someone has a mental health disorder it sounds, to me, so negative and so judgmental. I picked up on the language about calling things ‘a challenge’ from attending a mental health conference last year that was hosted by the Institute of Families for Child and Youth Mental Health. They asked the young people themselves ‘What language do you prefer when people are talking about your mental health problems/difficulties/challenge?’ And they said they would very much prefer the idea of using the word ‘challenge’ because that left the door open to possibility and hope, because if it's a challenge you can just keep working at it. Whereas if it’s a disorder, it sounds a lot more definitive and that there's not quite as much room to grow.

BLOOM: You repeat full names and diagnosis quite often. Is the book meant to be read from start to finish? Or can you kind of skip around?

Ann Douglas: You can dive in to whatever you need most today. If your child is having a hard time at school you might dive into the advocacy section and if you’re preparing for that first meeting to get a diagnosis, you might start there in the book. If you just want to know what it’s like for other families, you might read the stuff on how it is for other people and their families. That’s why it has a really good table of contents and comprehensive index—so that whatever your issue is today when you kind of feel like you're hitting the wall, then flip open the book and look for the appropriate section. You might be inspired to read other sections around it, but at least if you have a burning question or issue today, then you know where to go.

BLOOM: What kind of feedback have you had? What are you hearing from parents and professional groups?

Ann Douglas: They’re really grateful that there is a book like this now so that they don't feel quite so alone. They are just in awe of the braveness of the families who decided to share their stories in an effort to try and help other parents. I share that feeling of appreciation because if other families hadn’t been willing to share their stories there wouldn’t have been a book.

BLOOM: Was it challenging to write candidly about your own experiences?

Ann Douglas: I had to think hard about what I was prepared to share and what I wasn’t prepared to share, and I also needed to check things out with the kids because it’s not just my life, it’s their life too. So I made a lot of really conscious and deliberate choices about what I was going to write about. A couple of years ago, I sent out a tweet on Bell Let's Talk day saying that I lived with bipolar disorder and I thought it’s really important for people to know people out there who are dealing with a particular challenge or disability or whatever. Because if we don't have some sort of role models out there then nobody will ever understand that it’s possible to have a diagnosis and an amazing life. I think that I feel a real responsibility as somebody who, yes has bipolar disorder, but also, yes, has a pretty great life; that I should say I’m not going to be afraid to tell people I live with this.

BLOOM: Was it difficult to choose what you were going to include?

Ann Douglas: I think I just wanted to be as honest as I could and talk about different experiences that my kids had had and that we’d had because, again, not wanting other parents to feel like they were doing it wrong if their child was having a hard time at school or if they were having a hard time navigating the children’s services or mental health care systems. The systems are complicated and schools don’t always have the resources they need to be able to respond to the needs of children. I think that if we all talk about these challenges then that’s the first step to getting these various systems funded enough that every child gets their needs met sooner rather than later.

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Custody or services?

Stacey Berton of Kitchener, Ont. is a single parent raising Wesley, 9 (above), who has autism and symptoms of bipolar disorder. This past spring, Wesley's aggression increased to the point that he was hurting himself and others. "The school couldn't manage it and I was covered in bruises and there was no help," Stacey says. Twice in June, Wesley was hospitalized in the child psychiatric ward at Grand River Hospital. Stacey looked for a specialized day program that would meet his needs but none existed. She was told her only alternative was to sign over temporary custody of Wesley to Child and Family Services so that he could be fast-tracked into Kidslink, a residential program for children with mental-health issues. A week after being admitted, Stacey learned Wesley would have to be moved because Kidslink couldn’t maintain the one-to-one support he needed.
BLOOM: Tell us about Wesley.

Stacey Berton: Wesley is verbal and bright and eccentric. He knows every make and model and colour of vehicles. He loves riding bikes and colouring and has a great sense of humour. He also has terrible anxiety and doesn’t under social concepts. He’s afraid of many things: that his Mom might be taken, or our van might be taken, or our home might be taken.

BLOOM: When was Wesley diagnosed and what kind of intervention has he had?

Stacey Berton: He was diagnosed with autism at the age of three. I quickly discovered that early intervention was necessary, but the therapies were inaccessible due to their high cost and limited government funding. Like many parents, I gave up work to try to become adept at what would help my son. I worked with Wesley and I drove him from one therapy to another. Our family fell apart with the financial strain. I moved with Wesley from a rural area to Kitchener where I thought we would have more access to support. But I’m living in poverty and still navigating the red tape.

BLOOM: What precipitated the current crisis you are in with Wesley?

Stacey Berton: He was very functional at school and plans were being made for him to be fully integrated in a regular classroom without an aid next year. Then in the spring, he became very aggressive. He had rages and mood swings and acted out violently. I love my son fiercely but I couldn’t stop him. He’s very strong and I started to have bruises on my body. Then he began hitting other kids and teachers and the strategies we had in place at school weren’t working. On two occasions in June I had to take him to the child psychiatric ward at the hospital. I met with Developmental Access Services to try to find a day program where Wesley’s needs could be met and he could come home at night to me and sleep in his own bed. I was told that these programs don’t exist. The only option to get him into a residential placement – because of the wait lists – was to sign over temporary custody to Child and Family Services.

BLOOM: How did you feel about signing over temporary custody?

Stacey Berton: It’s the most painful thing I’ve ever had to do. I did it because I believed that it would put Wesley in the hands of organizations, alongside me, and we would all have a responsibility to getting Wesley the care he needs. They found him a place at Kidslink, which is a residential program for kids with mental-health issues. The child psychiatrist at the hospital supported this placement. Wesley had gone there once a month for respite days so was familiar with it. They have a water park, a place to ride bikes, a gymnasium and a classroom program with a small teacher-student ratio.

BLOOM: What has happened since Wesley went to Kidslink two weeks ago?

Stacey Berton: I brought him to stay with his father for the weekend and both his father and I noticed a decrease in aggression and he was asking to go back to Kidslink. Then I had a call from Kidslink to let me know that that he was getting worse and they were planning to move him to a group home for children with autism. They had been discussing this with Child and Family Services the week before but hadn’t notified me.

BLOOM: Why do they feel that Wesley needs to be moved?

Stacey Berton: They say they don’t have the funds to continue to provide Wesley with a one-on-one worker. It’s not an issue of Wesley’s aggression, it’s money. I was told that in other cases they’ve had parents pay for the one-on-one worker. And they say they can’t meet his needs based on autism, but they put him in knowing what his needs were. Moving a child to another place would be hard on any child but Wesley is very fragile and anxious. The group homes don’t have any more resources or access to funding than Kidslink, but they just want to move him along. Bouncing Wesley from one place to another will be very traumatic for him.

BLOOM: I know you’ve started a Facebook group called Please Help Wesley. What do you hope to achieve through this group?

Stacey Berton: My goal is to advocate for a day program where we can have our children’s needs met and they can go home to their families at night. It needs to be a year-round program and to offer therapies and schooling onsite. I’ve already made contact with four families who have situations very similar to ours. We’re hoping to meet and find ways to fundraise for this kind of program.

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