Tuesday, July 12, 2011

High-needs parenting: It takes a mental toll

I recently posted about a study of dads of young adults with autism who had high rates of clinical depression and were pessimistic about their child's future: Dads and depression. I was surprised that we didn't get a single comment.

Last night I was reading some blogs I follow and was struck by these two parents who recount the psychological toll of parenting a child (or children) with complex needs:

I've lived in fear for the past 3 years (this is an amazing blog by one of Holland Bloorview's family leaders, Cheryl Peters).

It seems that depression and anxiety are part of the package of raising a child with complex disabilities. One study of moms of youth with autism likened their stress level to that of combat soldiers.

I think the mental-health impact of raising children with disabilities in our culture is a bit taboo and minimized.

What do you think? Louise


I agree completely. Raising children with disabilities is indeed stressful. In fact, I was just in to see my doctor because I've been depressed. My son is turning thirty next week and I'm having a difficult time with it. While other parents my age are becoming empty nesters, I am still dealing with a "child" who is completely dependent on me.

This is the thing I find interesting... Over the years, my husband and I have talked to other parents of children with disabilities in hospitals, schools, etc., and almost everyone agrees that if given a choice to keep their own challenges or trade with another, they would choose our own every time.

First of all, thank you for your wonderful blog. I've been a reader for awhile, but have never commented before.

There are ongoing studies looking at the mental health toll of being a special needs parent. I actually went to a conference at UCSF a couple of months ago and one of the keynote speakers gave a talk on telomere length and care giving. The basic gist is that the longer your telomeres, the more likely you are to live longer and remain healthy. Mothers who were care givers for autistic children on average had shorter telomeres and greater responses to simple stressors, as do those with chronic depression and other mental health issues. The study is being led by Nobel laureate Elizabeth Blackburn, although I just searched pubmed and I don't think the paper has come out yet.

As likely one of only a few parents of a special needs child in the audience that day, I was speechless. I realized then that things had to change and I had to start looking for the good in my life instead of concentrating on the difficult/cumbersome things that can often overwhelm daily life.

I once listened to a presentation by an esteemed mental health professional about the effects of epilepsy on families. Of nearly all the chronic disabilities, the rates of maternal depression were highest and the rates of suicide in male siblings as well. The uncertainty and particular stresses of seizures, coupled with the still prevailing stigma contribute to these abysmal numbers. When I heard it, I felt strangely relieved. I think there's a tendency to think one is not coping well when you have a child with a chronic illness and it goes on and on for years. In fact, it's very difficult to cope "well," having that affirmed was important to me -- made me accept that I was doing a good job and that it was appropriate to feel down and depressed periodically.

Cheryl is an amazing woman and mother. Her girls are so lucky to have her! And Bloorview is lucky to have her, too!

I often wonder if there would be so much depression if people had proper help. And by proper I mean well paid and appropriately trained help, daily or at least several times a week. I am very lucky here in that we have been able to swing it for the most part. I think parents get so burned out by the high level of care needed...and the fact that it can be really quite tedious...that it's THAT that causes the problem, not so much disability, you know what I mean? In any case, I still think folks who deal with severe behavioural issues have it the worst...violent, or self-abusive, repetitive behaviour...those are brutal and I am especially amazed at parents who deal with this every day.

Hi --

DeeAnn -- thank you so much for writing! I can certainly imagine some of the feelings you are having. My son, 17, is not going off to university like his nieces and sometimes I feel that while I want him to have the best possible life, I also want a life too! I think balancing those two is really challenging. I hope you got some good support or treatment from your doctor. Keep us posted and let us know how the birthday goes! xo

Hi Beth -- Welcome to BLOOM!

I have heard of the study you mention. I've even thought -- would I want to know whether my telomeres were shorten than normal if I could be tested?! I'm not sure I would.

What have have you started to do to shift your focus to the good in life, as you mention?

I dropped by your blog and your son is adorable. Perhaps you can write a guest blog for us?

Cheers, Louise

Thanks for sharing the info re parenting kids with seizures, Elizabeth.

It is important to acknowledge how stressful our lives are and how we are more susceptible to depression/anxiety.

Too often I think we feel we "should" be coping better, when, as you say, we are coping very well given the magnitude of the situation! xo

Hi Claire -- I agree. We have all of this research evidence about the psychological stress of high-needs parenting but we don't seem to see it translating into any practical interventions!!!!

It would be so interesting to see how much could be mitigated by better support. Thanks for writing!

Since Owen's passing, I have often said I feel like I've just finished a tour of duty. A life of high stress and extreme vigilance was all I knew for a long time - now that the structure is gone, my duty over, there is an ongoing recalibration and a re-entering into civilization. Living the life I had was like living in a parallel universe.

I agree with Claire - disability itself is not a problem. It's the management and care that is grueling, especially without outside support. Add to that the worry and the fear. Plus the systemic encouragement and expectation of continual improvement... It's enough to send anyone over the edge.

Louise- Thank you SO much for the shout out. Reading the other comments here makes me quite glad (kind of?) that I'm not alone, when I FEEL alone wandering this special needs parenting journey. No matter how affected our children are (with whatever special needs we face), it's nice to know that we're not alone.

Hi Louise!

Sorry it took me so long to get back here and respond. I just thought I would drop by again to see what other people had written.

And yes, I agree. I would not want to know if my telomeres were shortened. It would definitely add to the anxiety associated with the what-happens-after-I'm-gone scenario, even if that is a long way off.

To reduce stress I try to focus on laughing. It turns out that my kid is hilarious. He thinks I'm hilarious too so I guess it's mutual. Either way there's a lot of laughing to be done. Sounds corny, I know, but it works for us.

There is also a visualization and breathing technique that has been shown to slow the heart rate in seconds, but it is a little long to be describing here.

Anyway, I'd be happy to write something for you guys if you still want. Just let me know details. I really haven't a clue what a guest blog involves...sonshinechronicle [at] gmail.com.