That’s what our families look like

Girl arguingLast week a mother was describing how differently her family was viewed by two very separate people — a clinician and a child welfare worker. She said, to a room of parents whose children have behavioral health needs, “You know how our families can look from the outside to other people?” Everyone nodded. We knew. The mother then went on to recount that when her child and family had in-home therapy, the clinician saw mental health problems. When DCF was asked to provide voluntary services, they came in looking for the ways the parents could have “caused” the mental health problems.

Many of us realize early on that having a diagnosis for our child can open doors. Insurance requires one for billing and special education plans usually do too (even though that is not supposed to be true). There is something to be said for that feeling when we can point to a diagnosis and say, “Aha! I knew it was something like this. I am not a bad, or incompetent, or seeing-things-that-aren’t-really there parent. What is going on has a name and a description and a set of treatments.” We feel relieved for a little while.

But then a new confusion sets in. The doctors and therapists and teachers and the in-home workers all have a diferent idea of what a diagnosis means. And they often have a different idea of how you should parent when your child has a certain diagnosis. Let’s say your child has been diagnosed with bipolar disorder. You run to the internet and get a descripition. A lot of it fits but some of it seems off the mark. You know your son or daughter has extreme moods but you wonder if not being able to focus is part of it. What about her defiance? What’s the best approach — setting limits, being flexible, a combination? And once you’ve figured all that out, how come what works on Saturday doesn’t do the trick on Monday? We can end up looking like inconsistent, ineffective and confused parents. From the outside looking in, that’s what people see.

Social attitutes and stigma about children’s mental health needs contribute to all this. Some people (okay more than some) blame parents for their child’s behavior, moods and inability to manage things better.

It’s not just the children or teen but the family as a whole who are often subjected to stigma. Parents may also experience increased stress, strain, and social isolation as they care for their child while attempting to buffer themselves and their child from the negative attitudes and perceptions of others (Mukolo, Heflinger, & Wallston, 2010). Some parents may stop taking their child to public places for fear that their child’s emotional or behavioral problems will be triggered and result in negative reactions and judgments. Others may feel they have to educate whoever is interested. Still others tough it out and let the chips fall where they may. But we are all aware of outside judgements and interpretations.

A few years ago, I took two parents with me to talk about our children and mental health issues on a local radio station. One was a dad from the north shore who had overheard a teacher talking about his child in a local grocery store. The teacher was describing his son’s problems and behavior which had included a psychiatric hospitalization. She saw it as a discipline problem. I had my own stories to tell as did the other parent. Afterward we spoke with the radio host, who herself had experienced depression. “I’m curious,” she said. “You all have your own experiences and I’d like to get your opinion.” She told us about her friend, who had an elementary school son with bipolar. She thought her friend would parent differently; instead she let a lot of things go at bedtime. She wasn’t stern, she negotiated, she was careful not to anger her son. The radio host couldn’t figure it out. From the outside, this looked like a tentative, unconfident parent. To her, it didn’t seem like “normal” parenting. The other parents and I looked at each other. “When you have a child like that,” we all said. “You do what works, which is often not what you thought you’d do.” We explained that you adjust and manuever constantly. You create a “new normal.”

Some of us worry that we play a part in our child’s problems. We blame themselves and feel that we should have “seen it sooner” or wonder if our child’s mental health problems are a result of our failure in some way. This leaves us feeling vulnerable. If that child welfare worker or clinician pokes at that vulnerability, we may look like a deer in headlights, frozen in our feelings.

This is what our families look like. We are constantly reinventing parenting. We rarely know what’s going to work before we try it and we are constantly looking for things that do work. We know that chaos is often right around the corner and we find things to fend it off. Whether it looks smart and creative or inconsistent and poorly planned depends on your point of view. It also depends on your training. What parents know is that it’s pretty unilikely that our children will learn by just absorbing the rules or make strides from rigid discipline. And what works one day or week, may not work the next.

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4 thoughts on “That’s what our families look like

  1. I appreciate reading your thoughts Lisa. It is very difficult to know what the right thing is to do and one has to choose where it’s most important to inflict some controls/behavioral request. I think that we all need to judge what works for ourselves and our families and let others sit with their judgments. I know personally, I am so beyond (at this point) worrying too much about what others think. The most important thing for me (now) is how my son is doing and trying to strengthen his interpersonal skills (for his benefit) and self-esteem.
    Be Well, T. Mckay

  2. Lisa, Your emphasis on the family, the struggle of parenting and the pervasive judgmental attitudes is much needed. Your blog should be required reading for those who work in any official capacity with children and families dealing with these issues. I am upset to hear that a teacher would be discussing a student in a public setting. Aren’t there standards regarding this behavior? In the health care field, even if the person is unnamed, but can be identified by the description, discussions such as these should not occur.
    Thank you for your blog,

  3. As both a parent of a young adult with a number of mental health diagnonsis’s
    as well as an Educational Advocate who specializes in helping students with a mental
    Illness on an IEP or amend it if not working.
    I remember when my son was young and every
    time I went to a meeting the school would say if you would just get him services from DMH everything would be fine. Well I did get services and one day was on the verge of a heart attack and
    needed respite ASAP. I pleaded with the private agency to find my son a place to go because my doctor gave me only minutes before he was admitting me to the ICU. The Program Director asked if I could wait to be hospitalized. Maybe a day or two. My response you don’t get it pending heart attack. I got a small bag packed for him and was hospitalized. As a single parent I did what I needed to do take care of myself so I would be around for my son. The next day I got a call from the school telling me that they were filing a 51-A. It was not against me but the agency my son got respite from. No one picked up his bag with his meds and the respite provider gave my son her meds. Of course when my son went into school the next day he told the school nurse. Our next meeting was “well if you never got those people involved he would be easier to work with”…… GRRR
    As an Educational Advocate I often get push back about how could a mental illness
    Impact education….. So my usual question is who requires an IEP more a child in a wheel chair or a student with a mental illness. More often than not I get the wheel chair. My time to stomp. I inquire why? I never said why the child is in a wheel chair. I say in this case the student broke their leg and it is easier to get to class on time. The child with a mental illness may be unable to learn because of all that is distracting their ability to focus or may need additional time to do their work.

    Spot on Lisa! Thanks for all you do.

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