By Susan Cosgrove
If you see us on the bus, I guarantee you’ll hear us too. You’ll want to look up from your phone or book or newspaper and watch the activity.
Because the fact is that we are a commotion—everywhere and anywhere we go. I probably look an awful lot like I’m okay with that, but sometimes my vulnerability is hard to hide. If you look a little closer you’ll understand why.
If you watch us, you can tell that I’m the mom. In fact, I’m a single mom to three very special kids. The big, noisy man-child is Liam. He’s 12 and has autism; he’s barging his way into adolescence at an awkwardly astounding pace that scares me, and confuses his delicate sense of self.
He’s the one who gets the funny looks because he loves to sing “The Wheels on the Bus,” ask the same questions over and over, and tell anyone who will listen why the Autobots can’t be friends with the Decepticons.
Liam understands very well that he is autistic and is often angry about that.
If you see him on a good day you might just turn the volume on your music a little louder and tune him out. But if you see him on a bad day, you may hit pause and watch. You may even chat with your fellow passengers about the big boy who’s crying because he forgot his iPad at home, or growling at a stranger who accidently bumped into him.
If you pass us in the aisle, you’ll wonder why I brought a big, bulky stroller that’s not at all appropriate for public transit. I may give you an apologetic look as you squeeze by.
Phoenix, my toddler, is the reason I take it everywhere. Phoenix is two, and, just like his big brother, he has autism. He is smart and cute and generally overwhelmed by the outside world.
You may hear him recite the bus number or even read some words from the signs and buttons on the bus. You’ll probably want to smile at him and maybe even try to touch his blond curls. But if you do, you’ll understand why I drag a great, big stroller wherever I go.
Chances are he’ll react to you with fear, screaming and banging his head repeatedly on the headrest of his stroller. Phoenix's habit of self-injury when he's overwhelmed is probably the hardest thing I've ever dealt with as a parent.
I will smile at you and let you know that you’ve done nothing wrong, but he has autism and it’s really best if you leave him alone. My hand will remain close to his sweet head, as a barrier between himself and his instinct for self-harm.
If you sit back and listen, without touching Phoenix, you may hear him say and do some pretty extraordinary things. And he probably won’t notice if you smile at me to let me know that you can see he’s kind of awesome (I wholeheartedly agree).
If you watch my family ride the bus, you’ll see how exciting life can be.
You may notice Kaya, their bright, eccentric 10-year-old sister. She’s the one with the funky haircut and metallic pink Doc Martins. Kaya is the middle child and the only one who doesn’t have autism. She does have a diagnosis that includes being gifted and having ADHD and a learning disability. When she grows up she wants to be a labour and delivery nurse or open a drag queen hair and esthetics salon. Either one is fine with me.
On the bus, Kaya’s probably chatting at a rapid pace, telling anyone who will listen about Minecraft and music.
But if we’re having a bad day, you may get a chance to see her as a young caregiver in action. How easily she forgets that she is 10, and slips into the role of helping me help the boys through our commute. She may be reading the toddler a book, or offering Liam her phone to play with in the hopes that he’ll settle down.
In her eyes you will see that she understands why her brothers draw so much attention and how much she loves and protects them. What you may not see is how many of the normal things in life she has sacrificed for her brothers and me, how often she ends up playing the caregiving role, and how graciously she accepts it.
If you watch how I interact with them, you may think that I look calm. That's because my demeanour can have an impact on the success or failure of our trip. We may be heading to the movies or to an appointment, but my goal is always just to arrive. You’ll notice how quiet I keep my voice in the hope that they will pick up on my signals and join me with some quiet of their own.
You’ll see me constantly glancing around and sending out smiles to my fellow passengers. Smiles that say “I know you’re looking at me and I understand why. I know you wanted a quiet ride, but today it won’t happen.”
By smiling I am asking you to take a moment and put yourself in my shoes. Riding the bus with these amazing kids is a journey that requires planning, and our success can be affected by our fellow travellers. And it’s not just the bus ride. Everywhere we go and everything we do is planned according to the needs of the boys. Spontaneity is not part of our lifestyle.
If you see us on the bus (or at the store, in the park, at the doctor’s office), you’ll know that we are a special family. There are many ways that you can honour our unique journey. Share a smile or a story with us, let us know you understand. If a quiet commute is what you prefer, we don't mind if you politely switch seats and distance yourself from our chaos.
Just remember that although he may be different, Liam is learning to understand himself.
So if he asks you “Please don’t touch me/talk to me/laugh at me because I’m autistic,” please respect that. Self-advocacy is a skill that he’s working hard to learn and I’ve taught him that if he’s honest with people, they’ll respect his difference. On a good day he may ask or tell you something a few times. Please feel free to chat with him. You may learn something new about the world.
If I see you on the bus and I can tell that your journey is like mine, that maybe we are travelling the same path, I promise I will smile. I will send you vibes of understanding, and just maybe, if our little ones are having a good day, we can even have a chat.
If I see you on the bus I promise to respect your journey, whatever that may be.
Susan Cosgrove is a family leader on Holland Bloorview's Research Family Engagement Committee.
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.
Posts
