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.

Why Didn't Anyone Tell Me? Part One: Communicating with Enrichment Providers

Why Didn’t Anyone Tell Me?

“Why didn’t anyone tell me this child had an anxiety disorder? She started getting agitated whenever it was even a little cloudy, and would ask us over and over if it was safe to be outside. We didn’t know what to do.”

“I explained to the director that my son had autism. She said that was fine; she was used to children with autism.  Within two weeks, he had been asked to leave because of meltdowns at the end of recess."

One program leader did not know a child had an anxiety disorder. One knew a child had autism, but not how it tended to manifest, nor how to respond. What we have here is a failure to communicate.

While it is not the case that every child can have a positive experience in every summer or afterschool program, I do think the chances of success will be greatly improved if there is an open and trusting flow of information between parents and program leaders.

In this month’s blog post, I will be talking about communication from a parent’s perspective.  Next month, I will take off my parent hat, put on my provider’s hat, and go at the same issue from another perspective.

Part One:

Communicating with Enrichment Providers about Your Child’s Special Needs

A parent once told me, “I don’t tell providers my daughter has Asperger’s Syndrome.  She does fine.  And if I tell anyone, they won’t let her in.”

“She does fine.”

Really?  Or is Dad so accustomed to being with his child that he does not fully grasp how confusing and challenging her behaviors can actually be.   If the staff do not know a child has Asperger’s syndrome, what will their reactions be when she walks up to a volunteer and calmly tells him that he is too fat and should stop eating so much?   Will they understand why she is unwilling to participate in any activities that involve handling wet materials?  How long will it be before they realize she is an easy target for bullying?

If I tell anyone, they won’t let her in.

Let’s be clear about your rights and the provider’s responsibilities.  According to Title III of The Americans with Disabilities Act, “A public accommodation shall not impose or apply eligibility criteria that screen out or tend to screen out an individual with a disability or any class of individuals with disabilities from fully and equally enjoying any goods, services, facilities, privileges, advantages, or accommodations, unless such criteria can be shown to be necessary for the provision of the goods, services, facilities, privileges, advantages, or accommodations being offered.”   Although this law does not apply to clubs and religious institutions, most facilities, even if they are privately owned and operated, are subject to Title III. 

In other words, if it is not a private club or a religious institution, it is very unlikely that an enrichment program can exclude your child based on disability alone.  It is another matter if inclusion posses a threat to anyone or would alter the fundamental nature of the program.  If you believe your child is being excluded from a program based entirely upon a disability, I hope you will contact the Department of Justice or an attorney.  For more information, visit www.ada.gov.

Unless you know a program is exempt from the ADA, assume that your child’s disability is not in and of itself grounds for exclusion. When investigating a potential program, the question you need to explore is whether or not they can safely include your child without fundamentally altering the nature of their program, not whether they accept special needs children. 

She said that was fine; she was used to working with children with autism. 

There is an adage in the autism community, “If you’ve seen one child with autism, then you’ve seen one child with autism.”  Wouldn’t it be possible to swap out “autism” for “intellectual disability”, “cerebral palsy”, “a heart condition”, or frankly, most disabilities?

It has been my experience that some program providers are ready to make sweeping generalizations about a child based on their experiences with a small number of children who shared the same diagnosis.  But in order for the child to have a positive experience in a program, and for the program to have a positive experience with the child, program staff really need to understand how a disability plays out with this one child. 

In many cases, sharing this kind of detailed information may provide an opportunity for you to help the program staff develop a plan for providing reasonable accommodations for your child.  But if it is the case that the program truly cannot accommodate the child without either changing the fundamental nature of the program, or if any child’s safety is in jeopardy, would you not rather find this out before enrolling your child, so that you can look for a more suitable placement. And if you believe that the staff could, but would not, provide reasonable accommodations, well once again, I would urge you to contact an attorney or the Department of Justice.

Lead from strength.

I received that advice from my bridge playing mother, and though I never became much of a bridge player,  it has stood me in good stead when advocating for my son.

Begin your dialogue by focusing on strengths, both your child’s strength’s and the program’s strengths.  Move into the areas of concerns, offering an invitation to explore together whether and how your child can succeed in this program. 

“Troy loves drama, and he is such an expressive child. He has a phenomenal memory and is a natural on stage.  I am interested in having him do your improvisational theater program.  I just wanted to chat a little, because he is hearing impaired. He wears hearing aides, but he also needs to be able to read lips. How do you see that playing out on stage?”

“Deija is a budding engineer. She loves designing things and  is just great at programming.  I have heard you have a really exciting robotics program. I think she’d get a lot out of the program, and honestly, I think her skills at programming will be an asset to everyone, but I need you to know she has autism and often likes to work alone.  I understand that this is a team activity.  Can we explore ways she can be part of a team and still do some of her work independently?”

Express your sincere concern for the needs of the program as a whole.

Sincere being the operative word here.  I have trained numerous afterschool and summer providers in my community and have spoken to many others about their interest in inclusion.  The vast majority of enrichment providers I have spoken with genuinely want to welcome children with disabilities, but they may wonder how this will impact the rest of the program.

Their concerns are not without validity.  If a rocketry teacher has to repeatedly interrupt class to direct and then redirect one child, then the fundamental nature of the rocketry program has been altered. That does not mean the program will not work.  You and the program leader can put your cards on the table and explore together what to do if your child is losing focus.  

“I know that you can’t be constantly interrupting instruction to get Jesse organized.  It might help to know he responds very well to visual cues. If he looks confused, try pointing at something that will remind him of the next step.”

It should be reassuring to program leaders to know that you understand and support their need to balance their other students’ needs with the needs of your child.

Put the cart before the horse.

Realizing that sometimes people stop listening as soon as they have heard a negative, I recommend sharing the solution ahead of the problem.  If you open with, “My son has meltdowns when he has to make a transition,” the provider may never fully take in the clause “unless you give him an advance warning.”

Try this instead, “There are some simple things that we find help our son have a positive experience.  For example, when we give him advance warnings before he has to stop playing and come in, he does great.  It’s just when he doesn’t get any warning that he gets upset.”

Provide information about your child’s disability.

If a provider seems interested, share literature and websites with him.  Some parents write up a simple, one page sheet discussing their child’s disability and offering helpful accommodations.  Be mindful that these providers do not necessarily have the time to digest a lot of information, so do keep it as simple as possible.  Also, avoid acronyms and jargon, which may be bewildering to an enrichment provider with no background in education, medicine, or psychology. 

“My daughter’s IEP includes sensory breaks,” may not make a lot of sense.  “At school my daughter has a plan for going to a quiet spot when she is overwhelmed,” should make sense.

Listen

Sharing information is only a portion of communication.  Receiving and processing information shared by others is at least as important. Any conversation you have with enrichment staff, before, during, or after enrollment should include listening deeply to what they have to say.

These are some questions you might mull over as you listen:

Do I honestly believe my child’s inclusion will not alter the nature of the program or cause harm to my child or anyone else?

Do I believe this person understands my child’s condition? If not, does she want to?

Does this sound like a program that will benefit my child?

Are there any things going on in this program that could present problems for my child?

If the program leaders are resistant to inclusion of my child, what are their concerns?

Do these concerns strike me as valid or discriminatory?

If program leaders are interested including my child, do they sound prepared to do so in a way that will lead to a positive experience for everyone involved?

What are the needs of the program leaders and the other children participating?

What possibilities are there for making reasonable accommodations and modifications?

Be available for follow-up conversations once the program has started.

It could be a brief check-in at pick-up, an e-mail, or a phone call, but you and the enrichment provider should make a plan for touching base to discuss your child’s progress.  Find out what is best for the provider.  Some may prefer short conversations at pick-up, while for others this is a distraction.  Likewise, let providers know the best time to reach out to you.  If you are rushing to pick-up another child at another program, you will be unable to give the provider the attention he needs if he is trying to communicate about something important with you. 

Please share your own experiences with us.

I have shared a few ideas based on my own experiences, but I am only one person.

Parents: what have you found to be helpful in communicating with out-of-school time program leaders about your child? Are there any books or websites that you have used to help them understand a particular disability?  Have you ever written anything up for providers that you might share with us? 

Providers: What do you most wish parents would share with you about their children? How would you like them to share it?

Next month's blog: Why Didn't Anyone Tell Me? Part Two: Opening Dialogue with Parents.

Paper Mill in a Mason Jar

Paper Mill in a Mason Jar 

Overview:

• Students will make their own paper using mason jars, small tubs, hand-held blenders and other materials that minimize “out-of-seat time” and “just-sit time.” 
• This session is suitable for most students, including typically developing students, intellectually disabled students, mobility impaired students, and students who have difficulty with focus and impulse control.

This lesson provides opportunities for students to:

• Create tactile works of art; 

• Understand that paper and fiber can be recycled. 

Materials Needed: 8”x10” screens, rolling pins; hand blenders; plastic food storage containers ( slightly smaller than screens); napkins, towels, tea towels, and reusable cleaning cloths; wide-mouthed one quart mason jars (1 per student); various papers from recycling and paper shredders (be sure to include varied colors and textures, such as construction paper and tissue); hot water; sponges; wooden spoons; iron and ironing board; plastic gloves.

Optional Materials: Drier lint and bits of fiber; sparkles; dried flowers; pine needles; dried leaves; essential oils.

You will need to have access to a counter or other flat surface on which all paper can be stored while drying.

Make sure all preparation and storage areas are protected, as water will probably soak through.

Procedure:
1. Provide each student with a wide-mouthed mason jar.

2. Have students tear scraps of paper into one inch squares and drop them in the mason jar until it is half full, lightly packed. Remind them to think about how colors will combine and blend, pointing out that two primary colors will create a new color, but adding multiple colors will turn the product brown or grey.
3. Fill the jar halfway with hot water. Cover and soak until paper softens.  (Although it is recommended that it soak over night, I have soaked it for as little as 10 minutes with good results.)
4. When the paper has soaked, use a hand blender to blend it into a pulp, covering the top of the jar with a napkin to minimize spilling. At this stage, a very small amount of glitter may be added. Too much will cause the pulp to form clots. Small amounts of leaves and flowers may also be added now or after blending; again large amounts may cause clotting. Adding flowers after blending will keep them whole. Essential oils may be added for scent.
5. Some students are sensitive to the tactile sensation of touching pasty substances. Calmly, matter-of-factly point out, “Some people don’t like to touch wet things, and there are plastic gloves available for anyone who wants them.”

                                                             

6. Students should place their screens on top of their plastic storage containers and pour the pulp over the screen as evenly as possible. Allow the pulp to drain into the plastic container. Using sponges or wooden spoons, spread the pulp out to even it more. Dried flowers may be added at this point.
7. When the pulp has drained, lift the screen and place it on a napkin, tea towel, or reusable cleaning cloth, leaving enough room to fold the cloth over the screen. The texture of the cloth will be transferred to the paper, so students should choose their cloths carefully.

8. Fold the cloth. While keeping the screen covered, flip it over.
9. Unfold the cloth, gently remove the screen, and cover the paper again.
10. Roll with a rolling pin.
11. Allow the paper to dry slightly overnight.
12. Carefully smooth the cloth to avoid transferring creases. With the paper covered by the cloth, iron.

13. Unfold the cloth, but do not remove the paper until it is completely dry.
14. Keep the paper as is, mark it with a straight edge and trim it, or cut it into shapes. .