Wednesday, January 31, 2018

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.

11 comments:

The one thing that has truly saved me and has allowed me to get off medication is exercising EVERY.SINGLE.DAY....I always tell people that I exercise as much for my head as for the rest of my body....I can't stress enough how important it is for your peace of mind!

Hi Julie -- Thanks for posting. What kind of exercise do you do? Wondering how you fit it into your busy day. Thanks for sharing!

It is terribly difficult worrying about the future. I try to work towards it slowly and day by day. Doing something for yourself, no matter how small, helps me to keep moving forward.

I do stress out in thinking about my son's future, but I just prepare myself for the worst and hope for the best. I also keep myself busy, try to have a "normal life"... But my son's therapy, appointments, etc...Are my priority. I've also taken up exercising and it is helping. Staying positive has really helped me.

I would love to expand www.amothersrest.org to support you!

I think more of the world needs to know about PANDAS and PANS. When the link between infections/inflammation and and mental illness symptoms is missed in our children it sets them up for a lifetime of inadequate treatment and a very difficult childhood, often leading to the added stress of living with an illness other people do not understand. Strep can affect any child and families, our medical professionals and our communities need to be more aware. This condition affects the whole family. To learn more or to help create more awareness in Ontario visit www.pandaspansontario.org or find the organization on Facebook and Twitter.

Raising a disabled child is a lonely road to travel. I have three children and all three of them have been medically complex. My middle son has a genetic disorder that is destroying his arteries (Vascular Ehlers Danlos Syndrome) and every time he starts coughing up blood and having chest pain, I wonder how much longer he can keep strong before his body can’t keep going. My youngest son has a different range of problems, but is wheelchair bound. It’s kept him from feeling connected to his peers and even teachers sometimes forget that he is 13 and full of beauty and wonder. I have worked for years getting the right advocates and services in place, but I still get down. Sometimes it’s lonely and tiring and so hard to find support. I have VEDS like my older son and have had to undergo massive surgeries to stay alive. Sometimes I wonder what will happen to my disabled children when my own body gives out? I guess it’s late at night when the worst thoughts come out.

I do the same. I have 2 days a week with no kids at home, so after I drop them off, I head to the gym and I go again on the weekends when my husband is around. Otherwise, on the other days, I get up early and go for a 3-5km brisk walk. It doesn't fix anything, but definitely helps.

I am a pediatric nurse who works with children with complex needs and their families. People often ask me if it is hard to work with these kids or if it is too sad. What I can tell you from the bottom of my heart, is that I feel nothing but privilege to work with them. The children are amazingly resilient in so many ways and I have seen the unconditional love and devotion of so many parents and grandparents.I have also witnessed their fatigue and pain and stress. It is true that all families need support from their communities, respite for their children (which means neighbours or other family members may need to take training) and kindness towards the caregivers when they're having a bad day and the stress has made them a little less tolerant of others. Caregivers need care and fun to replenish themselves to take care of these children.My own child struggles with ADHD and we know first hand how advocating and dealing with other parents about friendships or behaviour can be isolating,painful
and exhausting for us. I also know that my experience does not begin to approach the experience of these families.Nursing, as well as other disciplines and community, need to be trained in and acknowledge that indeed some of these families are experiencing PTSD.This is an an area of research that needs to be followed up. Masters anyone?

Exercise, making time to just stop therapy and medical stuff and enjoy being a family for half hour, sleeping tablets once every couple months to get a night’s sleep and blogging about our sons journey. Nothing can ever stop the paralysing fear when I hear an ambulance siren (17 ambulances and critical care every time in the last 9 months), sleep deprivation is the worst form of torture and learning about how hard I have to fight every day just to get access to provisions that should be automatic for our child is exhausting but seeing a milestone met no matter how delayed makes it worthwhile. Having videos of my son laughing on my phone to cheer me up when the guilt at working (a necessity to pay for therapy) is essential. Having a safe place to vent when everyone calls you strong when inside all you want to do is go to sleep and not wake up or not wake up anymore in this nightmare but knowing you have to go on because your child needs you. Trying every day to push away the fear that he will die this week, this month, this year, not understanding how we can do that year on year - using exercise to run off the anger and fear.

The article's content is spot on and aligns with my own experience, as well as my research with other families. It's ABLEISM that is the problem. Ableism, like racism, has infiltrated every aspect of our lives and has made all of us believe that it is "just the way it is". No. We need to dismantle the ableist attitudes that keep devaluing our children's lives (if we are parents of someone with a disability) and your lives (if you are people who have disabilities). Ableism has trained society at large to think that an able body or mind is a BETTER than a disabled body or mind and because of this assumed superiority, the world has been structured accordingly. Does this sound like racism and white supremacy? It should, because they are linked. These are insidious power structures and have been and will continue to be very dangerous to real human lives. We need to keep fighting, it is exhausting and demoralizing and terrifying sometimes but so important that we keep it up in whatever ways we can. For my part, in part because my child's disability is relatively mild, and I have reaped the benefits of many unearned privileges by virtue of where I grew up and my race, I have chosen to both study and teach on the subject of inclusion and ableism. I wish you all the best and hope I can contribute in some meaningful way to the improvement of all of our and our children's lives.