Advice to a Parent Whose Child was Recently Diagnosed with Mental Illness: Part Two out of 100.

Truth What we learned from parents through our interviews for Behind The Wall is that parents and their child often have difficulty accepting a diagnosis of serious mental illness.

Sometimes the diagnosis comes with the mixed feelings of relief—for having a name for what it is that makes the ill person feel unwell, and also grief for what the illness portends. And because of the stigma of mental illness, even the most well-informed individual may choose to deny the diagnosis for a deep desire for it to be untrue. Most people understand to some degree that a mental illness diagnosis signifies a life with challenges, and for some, unnecessary shame.

But parents we interviewed can attest there is no shame in mental illness. A person with mental illness may have challenges but they are capable of living a full life, finding happiness, stability, and fulfillment. They are capable of meeting expectations, provided these are realistic.

How does one get there? As one mother put it, “As soon as I accepted it, my son’s life got better.” This is good advice for any parent.  In life, most of us have learned that an obstacle cannot be overcome without identifying what it is, exactly, to be overcome.

When a friend of mine learned her newborn was diagnosed with Down syndrome, she was filled with grief. She hadn’t expected to have a child who would have such profound challenges. But years later, she and her husband stood before his classroom on parent night and explained their son had a syndrome, and yes he looks different, and please explain it to your child because that will make it more comfortable for everyone. There is nothing to hide, nothing to be ashamed about. And what she has observed is that the children whose parents are open about the boy’s challenges are the ones who are most accepting and, well, friendly towards him.

Well, Down syndrome is not mental illness. And maybe the rest of society has a more difficult time understanding mental illness. But the example is apt in this regard: being honest and informed with your child and those in your child’s life can help him or her accept the illness and manage it better. Being honest with yourself, as a parent, can help you be more direct in finding the best treatments and solutions to the difficult day-to-day challenges. Bianca, a parent we interviewed told us that when someone asks her why her son is not attending college or a colleague asks about her son, she now just says, “He’s been diagnosed with schizophrenia.” She says, “Let them deal with it!”

What parents need, and often want when their child has been recently diagnosed with a serious mental illness —any illness– is honesty. Reality.

Since we couldn’t say it any better, here’s Kerri’s advice. She’s the parent of a young man in his late twenties who was first diagnosed with mental illness at the age of twelve.

To a parent whose child has been recently diagnosed I would never say, “Oh, it’s going to be fine, don’t worry.” I would be empathetic. I would say, “This is hard. I remember when Thomas…” I would draw upon when Thomas was first diagnosed. “I was devastated. It was hard. Take it one day at a time. Time will tell.”

I would give advice on what to do: “Make sure you have a good psychiatrist with whom you can communicate well, somebody you can trust. You need support. These are the things you should be doing. I hope you can come back to our support group next month. Do you have good friends there for you?”

I would give tangible advice on how to take care of himself or herself as a parent, make sure they have the information they need. If there is a good book for them, I would lend it. Websites, articles. I might even say, now that I know more about the medication piece, “Medication is really tricky…if you are ever concerned that your child is either over-medicated or on the wrong medication, you should watch for these signs…”

I would give concrete advice. I would never be like, “Oh, don’t worry. It’s all going to be great, wonderful. I’m sure your son or daughter will overcome this.”  I wouldn’t go there. I’d be in the here and now. I would never, ever say anything negative because I would never want to discourage a parent. I mean, there’s always hope and there are some people who do fine.

 

And what do parents of children diagnosed with serious mental illness want from the rest of us? To listen. To understand that parenting for them is different, poses more challenges than most parents have. They need us expect them to be late to things, not be able to show up sometimes. But most of all, they need people to be there for them.

More from our amazing super-parents to come…

 

As always, we are interested in your comments:

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