Many friends, relatives, or caregivers may have concerns about a child’s development,
but are unsure of how to raise the issue with the parents. It is crucial to pursue
any concerns, to ensure early and appropriate interventions; however, it can
be difficult to do so.
Drawing on the experience of parents, this essay also provides a list of Do’s
and Don’ts, such as:
- Listen to the child’s parent, start with their observations or
concerns
- Always be supportive, never judgmental
- Avoid jargon, labels, and terminology
- Keep it positive; emphasize ‘ruling out’ anything serious
No parent wants to hear concerns about a child, particularly regarding a child’s
development. All parents naturally want to protect their child. But, if a child
isn’t meeting developmental milestones, or is exhibiting one of the absolute
indicators or “red flags,” it is crucial that the child be properly
screened. In order for this to happen, many friends, grandparents, and clinicians
find themselves in the unenviable role of having to discuss developmental screenings
with a parent.
Developmental delays and disorders are still poorly understood by much of our
society. Few people understand the range of developmental disorders, let alone
the opportunities for treatment and intervention. Many of us may recognize the
differences in the physical features of children with Cerebral Palsy or Down
Syndrome; however, we often aren’t aware of more subtle “hidden disorders”
such as autism and how they present themselves in babies
and toddlers.
The lack of knowledge about developmental disorders is further compounded
by stigma. Sadly, what is not understood is often feared. This fear may prevent
a parent from pursuing questions or concerns about a child’s development. This
fear may also prevent those close to the parent—caregivers, grandparents,
or friends—from sharing their concerns.
Some caregivers, and even clinicians, may have concern about “labeling” a
child. A diagnosis doesn’t have to be a “label” —an appropriate
diagnosis may describe a child’s challenges, but should never define a child.
If a child is experiencing developmental delays, the specific diagnosis enables
that child to have access to the most appropriate educational programs and therapies,
such as occupational, speech, and physical therapy.
Early identification and intervention complement the core values of parenting:
to seek to understand each child as a unique individual and to meet each child’s
distinct needs in order to prepare them for adulthood. A child, who is more fully
understood, with respect to his/her individual strengths and weaknesses, will
have a better quality of life. The goal is simply to help every child reach his
or her fullest potential.
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If you are concerned about a child’s development, and want to bring it to the
attention of the child’s parent, here are a few Do’s and Don’ts:
DO:
1. Set the stage for a successful conversation.
“My mother invited me to go for a long walk to tell me what was concerning her
about my child. It confirmed my own suspicions. After, we had a long cry for
ourselves over it.”
Choosing the right time and place for a conversation to share your concerns is
very important. Try to speak in person at a time when there will be no interruptions.
Arrange to meet in a private setting. Dedicate as much time as you need to have
a full conversation. Understand that emotions may be unpredictable. Be ready
to offer help.
2. Start with the observations, questions, or concerns of the child’s parent:
“It is critical to respect a parent’s perspective; begin with a clear understanding
of whether or not they may have concerns, and what those might be.”
It’s important to assess where a parent stands in relation to understanding
his/her child’s development before sharing your own concerns. The parent
may already sense a problem and just not have the words to articulate it. Gently
probe and ask questions that will allow a parent to share their own observations,
questions, or concerns first. Then share your own observations. By doing so,
you will open an exchange and may even validate a parent’s hidden concerns
and fears.
3. Put yourself in the parent’s shoes. Be supportive, not judgmental.
“If you want to talk to a parent, please say it in
a loving way. It might be good to begin by making a positive comment about
the child’s strengths and by reinforcing
the parent’s skills, love, and dedication to the child.”
Some of the most memorable conversations that parents of children with special
needs report are those that take place at the critical moment a first concern
is expressed. An empathetic approach goes much further in establishing trust
and understanding than a judgmental or emotionally-closed or -charged one. Your
tone and manner should be open and available. Whatever the outcome, in the long
run, the parent will remember and appreciate your discussion if it is framed
in a caring way.
4. Focus on milestones, absolute indicators, and the need to “rule out” anything
serious.
“It is such an emotional subject, with so little that made sense. Milestones made
sense to me.”
Give the parent something positive to read (see our developmental checklist of
hallmark milestones and red flags). The checklist gives parents something to
think about and consider, but never puts a label on it. It gets the conversation
started with the child’s physician and provides specific information about
strengths and areas of challenge.
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5. Refer parents and caregivers to other resources. Some parents need to
come to this understanding on their own.
“I remember seeing a Web site that seemed to describe many of my son’s unique
and, frankly, troubling behaviors. As much as I wanted it to be wrong, the more
I read the better I understood that something was going on.”
Seeing developmental disorders described in writing, whether through literature or on the
Web, allows a parent to make the match with his/her own child’s behaviors
and needs. It provides an objective description of common features and allows
the parent to come into recognizing developmental concerns at their own pace.
6. Emphasize the importance of early identification and intervention.
“Early intervention is the key. Tell the parent that the earlier you catch a child,
the easier it is to help the child...if you let it go too long, it just takes
that much longer for the child to gain ground.”
One way to look at developmental concerns is that if a child had signs of a serious
and persistent physical illness, like asthma, you would want to get it checked
out as soon as possible to rule it out. If there really were a problem, it would
only make it worse by not doing so. Developmental delays are no different. By
not receiving timely interventions for concerns around language, behavior, and
social connectedness, the problems will not go away, but will worsen over time.
And what’s most hopeful is that early intervention works, improving life
in the long and short term for both the child and the family. So life will get
better once interventions are underway.
7. Be confident that sharing your concerns is always the right thing to do. The
hardest part is finding the right words and getting started.
“When my son was 18 months old with no language, a friend said that I should march
him right down to the pediatrician’s office. I have to admit I was a bit
offended but when I found out her advice was right, I thanked her. Most people
would just sit back on their hands and not say anything. Her delivery lacked
some tact, but she got me going.”
Try role playing what you will say first. Express what you have observed that
gives you concern in a caring, supportive way. By doing so, it may lower your
own anxiety and give you the confidence to have a heart-to-heart with a positive
outcome.
8. By sharing your concerns, you may help to validate what a parent is afraid
or unable to express.
“I felt comfortable in my denial. I just thought ‘oh, this too shall pass.’ But
when my sister expressed her concern, it articulated what I was too afraid to
say. Every now and then I need someone to shake me out of my comfort zone and
get me moving.”
Often a parent may have a nagging and persistent subliminal fear that something
is indeed wrong developmentally, but they may be afraid to say it out loud. All
they may need is to hear the same concern from someone else to confirm their
suspicions. These outcomes are usually described by parents as bringing them
relief. Now they don’t feel so alone. It provides the impetus to take the
next step for their child.
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DON’T:
1. Don’t dismiss a parent’s concerns.
“Just listen and observe. Take the time to listen to the parent and observe
the child before you do, or say, anything.”
If a parent shares concerns with you directly, you have a unique opportunity
to help them. Listening is often all that is needed to help parents channel
their concerns into words and actions.
2. Don’t compare one child to another. Each is unique.
“I’ve heard the story about how a child had no language and then one day,
started to speak in volumes, almost miraculously. I’ve heard about Einstein
being a late talker as another way to comfort me. Although well-meaning tales,
they did nothing to help me move forward to help my child. They only prolonged
my self-doubt.”
Often family and friends will share a story meant to give comfort to a parent
that gives an anecdote of someone else who struggled with early developmental
concerns, only to outgrow them in a dramatic or famous way. Instead of having
the intended effect of providing comfort and ruling out concerns, parents often
sense that they do not address their child’s unique concerns and dismiss
them. Or they may provide more insecurity to a first time parent who is already
experiencing self-doubt. Either way, anecdotes are not useful. It is more important
to think about the particular child in question.
3. Don’t use labels, technical jargon, or loaded terminology.
“When the teacher at my son’s preschool said that he ‘needed Special Education,’
I thought she meant that she thought he was mentally retarded; I just shut
down. Similarly, when my doctor told me she’d ‘Seen kids like him before’,
I stopped listening.”
It’s probably too scary to mention a specific disorder to a parent right
out of the gate. Many disorders are misunderstood and just the mention of them
can bring up great fear in parents
who may shut down. Sometimes giving a parent an article or book to read is
enough to make the connection.
4. Don’t scare a parent: keep it positive.
“I told my doctor that my daughter’s daycare provider
had some concerns about her, but I disagreed. ‘Wasn’t it OK for a child to
be a little bit different?
Why label?’ I’ll never forget my doctor’s simple, steady words: ‘Just get it
checked out, just rule it out. You have nothing to lose.’ She was right. If
it hadn’t been for the extra help my son got by being identified at such a
young age, he—actually, WE—would never be doing as well today.”
If a parent is encouraged to see their pediatrician with developmental concerns
about their child, there will be one of two outcomes, but each will have its
positive aspects. If concerns are ruled out, parents can rest easy. If there
are indeed confirmed concerns, seeking help through evaluation and referral
will eventually get the family back on a healthy developmental path.
No harm can be done by checking out concerns. Things can only get better.
This is a positive message that family and friends can share with parents to
encourage them to seek help.
See Physician to Parent for more guidance about sharing concerns.
See Next Steps for advice on how to support a loved one whose child has been
recently diagnosed.
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