By Dr. Carlos Gonzalez
Medical Director at CCGC
On the day of your child’s diagnosis, remember:
It probably took a lot of courage and effort to get to this point. No parent is happy to even consider the possibility that their child needs more help than they can give. Many parents, even when faced with their child’s growing difficulties, hesitate to bring that to someone else’s attention. Many parents see their child’s behavior as a bad reflection on their own parenting skill, or effort, or motivation, or caring.
But somehow, you took the step and asked for help. You answered a lot of questions, your child was seen by strangers who are supposedly experts. Information was gathered from your child’s school or preschool. And a diagnosis has been made. On the one hand, it can be a relief to know that your suspicions were well-founded and that others agree that there is a problem. On the other hand, a diagnosis makes it all real, perhaps too real. Because it implies that now something must happen, something must be done, by you and others, to help the situation.
So what is a diagnosis?
At its simplest, it means a child has an actual, real problem that is interfering with their progress, getting in the way of the child’s attempts to develop into a happy, competent adult, one that is able to manage a work situation, a loving relationship, and to develop a network of friends and other social supports that will allow an individual to be part of society.
We also have to realize that diagnosing a child is a very difficult thing. Children mature at different rates. They are also maturing as we speak, so that their abilities, their likes, their fears, their ability to communicate, and even what they like to eat or the colors they prefer, literally change from month to month. This is why a diagnosis must be made carefully and must be made by someone with a fair amount of knowledge and experience with children. And even at this point, the diagnosis of a child has to be seen as a “working” diagnosis, as we are always working with a “moving landscape” and not with a still picture.
Nevertheless, such a “working diagnosis” is necessary, because a child, more than an adult, is indeed moving and developing, and any obstacle may result in the child’s veering from this path of development and taking a “detour” from the path we would like them to be on. So that the sooner we find a way to get rid of the obstacle, or help the child overcome or compensate for the problem, the better chance the child will have to continue along an easier and happier path to adulthood.
Learning about your child’s diagnosis is key
A parent must be active in this process, and not hesitate to ask about anything that comes to mind, no matter how stupid you think it may sound. Chances are that whoever you are talking with has heard the question before and may even anticipate your question. Many of us are parents ourselves and know what it’s like to speak with a doctor about our own child. What does this diagnosis mean? What will happen if we do nothing?
Once you’ve asked a question, don’t take jargon as an explanation. Jargon is a “shorthand” way that professionals in a particular field or discipline use to talk to each other. It should not be used when talking to a parent unless the parent knows in detail what the word is referring to. An experienced professional will know better than to use strange-sounding or technical terms to talk about a child. Press them to do that.
As a parent, you are part of the treatment team
Any treatment that is proposed, whether medication or therapy, can only be started by a therapist or psychiatrist, and a child’s time in the office is brief, compared to them spending the rest of the time in their family. So, a parent has to be “in with the program” and make sure that how they behave with their child or how they talk to their child about the diagnosis and the plan for treatment goes along with the recommendations or the therapy being offered. Ask about what you can do to make sure that you agree with the treatment, and then to make sure that you are doing what you can to allow the treatment a good chance to work.
Ask about the purpose of medications prescribed, and about side effects. If you disagree with any proposed treatment and you do not say this, chances are your child will detect this and not want to cooperate with the treatment. If you do express concerns about treatment, expect that these concerns will be taken seriously, and you will feel more at ease and better informed for having brought up the questions.
Take other people’s stories about medications with caution, because they do not pertain to your child, and people are all too willing to give you either glowing and unrealistic views on treatment, or to give you horror stories that will scare you unless you ask a professional about them.
Deciding to open the circle
Being well informed will help you as you decide how to (or if to) communicate with others about your child’s diagnosis and treatment. You should be well informed as to how much or how little information you give to others. The people treating your child need your permission to reveal any information to anyone else, whether this be the school, pediatrician, or other evaluators. Part of your consultation with your child’s treatment staff should include a discussion about what to disclose and to whom.
And finally, a parent needs to model for their child how to approach problems. Your child should see you working with treatment staff, bringing up questions, providing important information and concerns, and meeting difficult problems head-on and without any loss of composure or hope. This may be the most important part of what you do to help.