Saints and survivors

We’ve all heard the statistics about the numbers of children who have mental health diagnoses, how they can lead to formidable problems in school as well as impact their relationships with friends and family. For some, the result can even be suicidal thoughts or acts.  It’s unsurprising that many parents can find these facts frightening and veer from disbelief to trying anything that might fix things.

I’ve known hundreds of families who attempted everything they could dream up to avoid having their child diagnosed with a significant mental health disorder.  Diane, a mom of four, had read that endorphins could counter depression.  So she went to Costco, bought a large trampoline and insisted her teen son work out on it every day.  He got fitter, but his depression got worse, endophins or no endorphins. Other parents have tried diets, herbal remedies and star charts hoping that a simple solution will fix an often complicated problem.

In the midst of dealing with all this upheaval around their child’s mental health needs, parents often find their marriage, financial health and ability to hold a job takes an enormous hit. While the data about children with mental health needs is sobering, the impact on their parents is equally appalling and very little attention is paid to it.  They face the steepest challenges of any group of parents, but get the least recognition and support.

This isn’t simply a result of stigma, though it certainly does play a part.    Parents of children with mental health needs have the highest divorce rate of any group of parents whose children have special needs.  A 2008 study reported that couples who have a child with ADHD are almost twice as likely to get divorced before their child is eight years old, compared to parents of kids without ADHD. In addition, among the two groups of couples studied who had divorced, the marriages with children diagnosed with ADHD were shorter than the marriages without children with ADHD. 

Other national surveys of children with special health care needs indicate that parents of children with mental health needs are more likely to lose their jobs or live in poverty. Up to 24 percent of families of children whose special needs had a major impact on their family reported that at least one parent had to stop working or cut work hours to care for their children.

Parents also report that their health insurance benefit is inadequate for their child’s mental health treatment and have to pay out of pocket for necessary services. PPAL’s 2010 report, Overcoming Barriers in Our Community, found that 32% of respondents said their child needed a treatment their insurance didn’t cover and 30% said that the copayment for therapy was difficult to afford.  In addition, almost 25% found it was difficult to pay for their child’s medications.

Many parents of “typical” children might find it overwhelming just to get up in the morning and face all this, let alone successfully navigate or manage it.  Parents of children with mental health needs ought to be seen as saints and survivors.  Our hats should be off to them.  Instead, they are often blamed and undervalued. 

While government and private foundations find money to invest in researching the causes of autism or childhood cancer (as they should) there is an assumption is that poor parenting choices, drug company conspiracies or shoddy diagnosis are some of the reasons for a child’s mental health needs. Parents of a child with a psychiatric diagnosis are more likely to be judged by others than parents of a child with developmental delays or chronic medical conditions.  They are also less likely to have the social supports and community connections that helps to support their family.

In spite of all this, parents whose children have mental health needs have created something amazing in this state and nationally.  There is strong family movement in children’s mental health led by those same parents who are trying to keep their marriages together, hold down jobs and be the best parent they know how to be.  It’s growing each day, one parent at a time.  Let’s give them the recognition they’ve earned.

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6 thoughts on “Saints and survivors

  1. So true and well put! I look forward to a day when the barriers to access care for our kids have come down and the understanding of there needs is there as a whole in the community.

  2. Thank you for this well written blog!!!!!!!
    As a parent, there is no greater fear than thinking you are failing to be a good parent. The schools, professionals, other parents, they are all are quick to place blame on the foundations of the child, mom and dad. And Mom and Dad are working harder than most highly paid CEO’s, spending thier time learning about the diagnosis, educating others to break the stigma, parenting thier other wonderful children, trying to schedule, manage and finance weekly visits to therapists, psychatrists, ect.. AND akk the while trying to LOVE and NUTURE their amazing child and lastly themselves. I often don’t know how many parents I meet do it all, but then I remember why I do it for my children and it all comes down to LOVE…Stay strong Mom and Dad!!

  3. Very true Lisa, I too hope that a day will come when the barriers are no longer and the next generation find it hard to believe that there ever were barriers to overcome.

  4. I have to disagree with Saint and in all honesty, Im barely surviving. There are a few things that I have said to my son while he was yelling, cursing, smashing, and destroying things and dodging out of the way of flying chairs, that I wish I could take back. If I was a saint, I would remain calm as the destruction happened all around me. Or if I just pulled over and calmly said “when you stop yelling at me and kicking my chair as It may cause an accident, and hitting the window of the car with threats to jump, isnt helping much either. But when you are calm, then I can proceed on home. but instead I yelled at him and fed into his issues.

    So no, I am far from a saint. But one thing is clear which I will take no responsible for, is I have not caused his mental health issues. He has severe mental health issues and that has nothing to do with me.

  5. The religious definition of Saint is one who produces three miracles…..I laugh at that sometimes because although my husband and I produced our own three miracles, it seems like many days we just barely survive with those three miracles. And then on other days, we not only survive, we Celebrate! We celebrate that there were no suicidal thoughts this week, we had a day without meltdowns, or another day when we didn’t have to wait on hold for 45 minutes for insurance representatives, or better yet, no trip to the pharmacy today! Mental Health wreaks havoc on families, emotionally and financially, and we never know what each day will bring. We are all survivors. We survive because we love our children and would do anything to help them. Saints? No, we all make mistakes. Survivors-most days, yes. And on the days when we are just barely surviving, it’s all about Love, hold onto that….

  6. I totally agree with what has been said. I would also stress the isolation that I, and probably others, feel because our children have different challenges. I feel isolated because people don’t understand what is going on in my family, and my kids are isolated because they go to different schools, have a hard time making friends their own age, and don’t fit in what other kids their age are doing. I feel the most significant support that is not available is respite. I have been involved with many different agencies in the last 12 years, and no one has been able to provide scheduled respite. I need a break from my kids and they need a break from me. I too have changed careers so that I can have flexible hours when I need them. In spite of all this, I continue to advocate for my kids and strive to give them the best life possible.

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