Thursday, September 10, 2015

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.


THANK YOU ALICIA for developing your heart and courage, for sharing your experiences to help others.

ANd thank you Louise for continuing to do your own heart/courage sharing.

I am a 58 yo autistic woman. And we are gathering critical mass in cocreating community which nurtures us all.

Your story resonates with me so much, Alicia. It is like stepping off the world, feeling alone and misunderstood and judged, especially by ourselves. And it's so important to work through. Thank you for writing this book! I am working on a similar one myself.