ENCOURAGING FAMILIES TO SHARE INFORMATION ABOUT SPECIAL NEEDS
Second in the Series: Why Didn’t Anyone Tell Me?
Mary Anna Dunn
A friend of mine calls them Unidentified Flying Campers. I know of no enrichment provider who wouldn’t immediately understand what she means. Parents have enrolled a child in a program without raising any issues or concerns, but it very quickly becomes clear that the child is facing significant challenges. Program staff don’t know how to help the child, and they don’t understand why they were never told that the child had special needs. Why didn’t they tell you?
Maybe You Didn’t Ask
Not too long ago, a program director told me he sometimes has three children or more with unidentified special needs show up in one session. This particular program leader has experience in special education and wants to include these children. He said if only parents identified children with special needs in advance, he could make appropriate plans. He would like to be able to arrange optimal groups – not, for example, accidentally placing five children with ADHD in the same classroom. Because of his experience in special education, he could also clear his administrative schedule and provide direct support for children who need it. The steps he would like to take are simple, but do require a heads up.
I suggested he add a line on the registration form asking if
the child had any special needs requiring support and/or modifications. He did and was delighted with the results. Parents/guardians
of children with special needs were more forthcoming. As an additional bonus,
parents of children who did not have diagnosed disabilities, but did need a
little extra help with certain issues, also took advantage of this opportunity
to provide information that helped his staff serve them better.
Application Questions
Should Encourage, Not Discourage Openness
Take a moment to walk around in the families’ shoes. What
information would you want to share
with providers? Information that will help your children have a positive
experience in their programs. What
information would you NOT want to share?
Any personal information that is not relevant to the program. Any information that would unfairly prejudice
camp staff against your child.
Consider this question, taken from an application to a
summer camp:
It is not necessarily the case that a child’s work with a
clinical psychologist indicates a problem that impacts that child’s camp
experience. If not, you are putting parents in the position of choosing between
being dishonest or sharing information that they would prefer to keep to
themselves. Let’s take a hypothetical here:
There is stress in a couple’s marriage, and the entire family
is in counseling. The child is not
acting out, and the therapy is proving to be successful not only in helping her understand
that the problems are not about her, but also in improving the dynamics between
the parents. You don’t need to know
about any of this. You need to know if there is anything going on in the
child’s life that will impact her camp experience. Most parents, if they believe
you are interested in helping their children, can be trusted to know what
concerns you need to be alerted to.
In the table below are sets of items taken directly from registration
forms. These requests provide an opportunity for parents to share important
information. They do not pry, and I see nothing about these requests that
suggests the camp providers are attempting to screen out children with
disabilities. Note that these questions only ask for personal and medical
information that is pertinent to the child’s experience in the program. For
example, one provider asks about medications
that could affect a child’s behavior. She did not ask for information on
medications that parents do not consider
relevant:
Please describe any special educational
needs your child has. This information will be kept confidential and will
help our staff plan the best instruction necessary for each child.
Please describe any medical conditions or allergies which your child
has, or medications your child takes, which may affect their behavior at camp.
|
Please briefly
describe any medical or other issues the student has of which the
instructor(s) should be aware:
|
Does
your child have allergies?
Is
there anything your child cannot eat?
Are there any
health problems we should know about?
Is there anything
else you would like us to know about your child?
|
|
|
In the first example, the provider has promised the
information will be kept confidential.
Indeed, it must be, and this assurance should be added to every registration. Moreover all registrations should be kept in
a secured place with very limited staff access.
Based entirely on the anecdotal evidence of program leaders
I have worked with, the simple step of adding a question about special needs proves
to be a great help, but occasionally children still arrive in a program with needs for
support that were not indicated on the registration form. One provider who added questions about
special needs told me, “…yes, people do still show up with apparent special
needs that have not been disclosed (or diagnosed?). It is frustrating, as it
takes us a while to realize that there is something going on that is out of the
child's control - not bad behavior or belligerence. The difference in my
patience and understanding is great when I know what's going on.”
Some Parents Don’t
Believe Programs Would Accept Their Children if They Shared Information About
Their Disabilities
If you want to encourage
disclosure, your materials should be sending a message that you are open to
inclusion. Do pictures in your
brochures, on your website, etc, depict children with visible disabilities? Is
there a statement anywhere that you are interested in inclusion? Please note, I said interested. Don’t promise
more than you can deliver. Your
backcountry hiking camp may really not be able to accommodate children in
wheelchairs, as much as you wish that it could.
One program’s promotional materials offered this message: We are interested in making reasonable accommodations for
children with special needs and typically include special needs children in our
activities.
We’ve Done All We Can to Encourage Openness, Yet
Some Parents Still Are Not Telling Us Their Children Have Special Needs. Why
Not?
Well, one obvious
reason comes to my mind: they don’t know. Some providers are very surprised to
hear this, but there are actually numerous reasons that a parent simply may not
know:
§
The child’s behavior is dramatically
different outside of the familiar home environment. Away from the family, confused and frightened by
unfamiliar settings and routines, anxiety kicks in and a child exhibits bizarre
behaviors the parents have never seen.
This is more likely to occur with a very young child.
§
The
parents may be from a community that does not acknowledge the existence of
certain developmental or psychiatric disabilities. They may be completely unaware that these
conditions exist, or they may believe psychiatric issues are the manifestation
of “weak faith”. Sadly, they may well believe that they are bad parents and
that someone else would have more success managing their children.
§
Parents are not the only people who are
sometimes blamed for children’s challenges.
Numerous books and articles blame
the schools for problematic behaviors, especially for ADHD. If only the
schools provided a more stimulating environment, more active learning, more
physical activities… If there wasn’t the pressure of standards and assessments. While I agree whole heartily that our schools
should be more engaging and less obsessed with standards, I fear that blaming
classrooms for ADHD behaviors may be setting expectations much too high for
enrichment programs. A parent who
believes his child’s ADHD symptoms arise from a deficit of physical activity in
school may send this child to rock climbing classes without her medication…a
potentially dangerous decision if the child’s ADHD symptoms continue to
present!
§
The
family may not be aware of a child’s issues because it is the norm for their
family. I once knew an entire family with numerous characteristics
associated with high functioning autism, parents included. I suspect the
parents’ families of origin may also have shared these traits. The parents
seemed unaware of just how different their children seemed compared to other
children in our program or of how much they were struggling. Given that these characteristics were the
norm in their family, and given that people with autism are not known for their
sensitivity to social conventions, it does not seem strange to me that they were
unaware of concerns that seemed obvious to the rest of us.
§
Some
families have adapted to the children’s behaviors and don’t realize just how
intense they actually are. Parents adapt, often barely conscious that they
are doing so. Maybe they never serve food this child cannot tolerate. Maybe
they keep the radio and TV off or the volume down and don’t expect him to
handle wet or moist art supplies.
Meltdowns don’t occur with the frequency they do in an unprepared
environment. Moreover, when they do happen, the parents are so accustomed to
them that they have lost sight of how different their situation actually
is.
§
The child
doesn’t actually have a disability. Don’t rule out this last possible explanation
for the parents’ failure to disclose. You may think this child has a
disability, but you probably are not a physician, a psychologist, a special
education teacher, or other professional qualified to diagnose this child, and
even if you are…no one asked you to. Not
every difference is a disability and not every child who needs extra help has a
disability. You have noticed that this
child is struggling to an extent that is not typical of other children in your
program, and that is important Your job is to help this student and all the
other students in the program have a positive experience in your program. Your real question is “How do I do that?”
not, “What’s this child’s label?”
As you see, there are multiple
possible reasons that a parent or guardian will enroll a child without
disclosing a disability, in spite of all your best efforts to encourage
openness. When the Unidentified Flying
Camper shows up, you need to be able to be understanding, recognizing that as
hard as this situation proved to be for you and the child, it was certainly not
the parents’ intention to put their son or daughter in a painful and
potentially dangerous situation. This
understanding should frame the conversation that needs to happen next. And even if parents are forthcoming at
registration, there will probably need to be at least one conversation between
providers and families in order to help the child have the best possible
experience with the program.
In our next blog we will discuss ways to encourage an
open and fruitful dialogue.