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:

Is the participant currently under the care of a physician or psychologist?  If yes, for what?

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?

Please describe disabilities or other challenges requiring assistance: What strategies do you find helpful?

Please briefly describe any medical or other issues the student has of which the instructor(s) should be aware:

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.