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.

Full text. Please! Can't You Just Sit Still and Pay Attention?

         Please! Can’t You Just Sit Still and Pay Attention? 
                                                                                              Mary Anna Dunn, Ed.D.

Among the concerns I have heard raised by enrichment providers, problems with distractibility and impulsiveness are certainly among the most common. Though it may be tempting to assume children with these issues all have ADHD, not every child who has issues with distractibility and impulse control has ADHD. Some are simply on the high end of active for any number of possible reasons.

Given that the relationship between the enrichment provider and the child is often very short term, it may not be necessary to know whether or not the child has ADHD or is struggling because of other, possibly temporary issues (such as adjusting to the unfamiliar environment of your program). What is important is this: if a child’s distractibility or impulse control challenges are interfering with her own or her peers’ opportunities to thrive in your program, she needs your help.

Keep in mind that you are not going to “fix” this child. You are not going to eliminate all problems that come up due to his challenges. But there are modifications and accommodations that may significantly improve his chances of having a positive experience in your program.

There is no one-size-fits-all approach. Look these tips over and pick and choose from the suggestions that work best for each individual. Remember that the child’s parents or guardians are among the best resources you can have for understanding how to support their child. Ask them for suggestions. I will write about communicating with families in a subsequent blog.

TIPS FOR SUPPORTING IMPULSIVE AND DISTRACTIBLE CHILDREN

For the next week, I will post a tip each day under the distractibility/impulsiveness strand.

A note on gender: in order to avoid the awkwardness of “his or her,” I will alternate gender between sections.

Where examples are provided, care has been taken to disguise the identity of the child. The names are fictitious, and the child’s gender may or may not be the same as the actual child. Other details may also have been altered for the sake of anonymity.

1. Spend some time focusing not on the child’s challenges, but on her gifts. Often the very behaviors that are driving you crazy are also a window into her delightful mind.

Building this robot kept a highly active student on-task.

This summer, I was asked to observe a six year-old in a summer program who was having difficulty due to her distractibility and impulsiveness. When I arrived, the children were finishing breakfast. Within a few minutes of my arrival, she, like the others at her table, was beginning to clean up. She and her peers were gathering up napkins, placing forks in bowls, closing cereal boxes, and making all the other normal preparations for putting their snacks away. But as the other children continued with this unremarkable daily chore, I saw a gleam in our girl’s eye. Soon, she was building a tower of her breakfast articles. As the construction project rose perilously, the entire table began to shout, “Look what Georgia is doing!” Her behavior was problematic, but this child was a budding engineer, asking just the types of questions we want children to ask: What happens if I do this? How can I make this better?

Distractibility and impulsiveness are challenges. Flexibility and spontaneity are opportunities. Identify the ways your student demonstrates the latter, and help her develop these wonderful gifts.


2. Pay attention to seating arrangements.

• For group work, I prefer a learning environment in which children are seated in a circle. There are many reasons for this. For the sake of brevity, I will focus on those that affect the distractible/impulsive child: It keeps him in your line of vision and you in his; it leaves no one in the back of the room, where attention may more easily wander; it enables you to keep all distractible children near you, without seating them next to each other. 
• Pay attention to how children are grouped. Separate children who tend to get each other off-task. 
• Make note of potential distractions close to your student. An open window, a hall door, a colorful bulletin board, a pet, these are all things that some children can tune out and other’s cannot. An intervention may be nothing more complicated than quietly shutting the hall door as another group goes by, or rearranging the room so that circle time does not occur next to the salt water aquarium.  
• For small group and individual activities, it is important to make sure that a child who needs to focus is not seated next to a loud group. Sometimes noise is a symptom of engaged, meaningful learning, especially during the creative types of activities that happen during out-of-school time. The hubbub that can signal an engaged group can also be a distraction, but simple steps can improve the distractible child’s ability to concentrate. Try some of these ideas: 
•  place a table in a corner, with a chair facing a relatively bare wall and let her work there; 
• allow the child to work just outside of the main room, door open, child in plain view;  
• if they must be in the same room, place stations that are potentially noisy, such as board games, across the room from quite activities, such as drawing. 
• Consider providing soft, air filled cushions to place on a child’s seat if he is inclined to rock his chair. Not only is this safer, it is less irritating than the constant clang of chair legs on the floor. 

3. Use your environment to support the child’s regulation of attention and impulses. 

• Your goal needs to be to draw your student’s attention towards what you want her to attend, and away from what you don’t want her to attend. Teachers often do this by using brightly colored chalk or dry erase markers, sometimes changing colors to highlight key concepts. 
•  Conversely, it is nice to have an area of the room that is relatively free from distractions such as posters, mobiles, pets, diorama’s etc, where the student can go if he needs to focus (see above). 

4. Make sure “just sit time” is of an appropriate length and your distractible/impulsive students are well-supported. It can be frustrating to witness what happens when well-meaning adults ask children to sit or stand quietly for inappropriate lengths of time, either listening to instructions or waiting for something to happen. This “just sit time” provides ample opportunity for the mind and the body to wander and the fidgets to set in. Keep in mind that a child’s attention span is shorter than an adult’s.

This skating teacher has her students' focus.

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• Do your best to keep the amount of time you are talking and children are listening short. If possible, break instructions into small chunks. Not only does this take less time, it makes retention of information easier. As an example, if your group is about to learn a new ballgame, don’t keep them on the sidelines listening to the rules of the entire game. Give them one set of instructions, let them practice, then move on to the next set of instructions. 
•  As already described above, pay attention to where your distractible/impulsive child is placed during ‘‘just sit time.” If possible, seat an adult beside him. 
•  Use visual cues. Some people are just not auditory learners and are really going to struggle when instructions are presented verbally, yet that is often how they are presented, especially outside of the classroom. In addition to your spoken instructions, use written instructions and/or drawings. Simple stick figures are just fine; you don’t need to be an artist. Visual cues are important for two reasons: they provide a focal point and a child whose attention has wandered needs a visual cue to get his bearings again. Often out-of-school time activities do not take place in a regular classroom, so you may find it challenging to provide these visual cues. Consider having a small easel chart or dry erase board handy in non-classroom spaces. Or, if available, pass out written instructions as a reference for those who need them. 
•  Sometimes “just sit time” happens during transitions, for example, your group has finished archery and cannot go the pool yet. Be prepared to keep the children’s attention when they are waiting for the next thing to happen. Great classroom teachers have a stock of tricks, or “time sponges,” they use to soak up those minutes of down time such as telling or reading stories, playing word, rhythm or guessing games, or asking the children interesting questions about themselves. For examples of “time sponges” see http://www.teachercreated.com/blog/2009/03/sponge-activities/.
• Provide the child with a meaningful activity during “just sit time.” For example, passing out paint brushes. 
• Keep your activities varied and alternate the types of activities. Try especially to mix up activities that require quiet focusing with activities that engage the whole body.

5. Monitor your student closely, especially during times known to be problematic, such as transitions and “just sit time”. Notice symptoms of restlessness and use cues to redirect her.

Soft, simple "fidgets".

•  Making eye contact is often enough. 
•  Consider saying her name if you cannot make eye contact, but be mindful that by doing so, you are drawing everyone’s attention to her struggle.  
• Unless there are rules in your organization against it, a light touch on the arm or shoulder can be helpful.  
• Develop one or two simple hand signals so that you can communicate privately with a child who is struggling. As examples, a finger to lips when she is talking out of turn, a finger pointed down to remind her to sit. 
•  Some teachers use laminated charts with rules, sometimes pictorially expressed, and quietly point to the rule that has been transgressed. 
•  Quietly remove a distracting object, perhaps replacing it with a less annoying alternative. For example, if a child is banging a soda bottle on the table over and over again, move the bottle and pass her a soft fidget ball (nothing that bounces!). 
•  Keep “fidgets” on-hand. In addition to soft cloth balls, we keep coiled key chains, socks filled with beans, and other inexpensive, quiet items. I have seen one of our staff members support a child simply by handing him her own wrist band to play with.

6. Keep your behavioral toolbox well-stocked with a variety of excellent tools. If you are running a short program, maybe an art class that meets one hour a week for six weeks, you may not be interested in setting up more than a minimal set of guidelines, but an afterschool program or summer day camp that meets everyday for several hours and over an extended period of time is going to need a strong management program. If you are in one of these programs, such as a public school afterschool program or a private summer long day camp, you probably already have a system in place. Strategies and philosophies vary and in many cases are established through system-wide policies over which the individual provider has little control. In the space below I will discuss a few behavioral strategies. Consider how these could work in your programs.

• Have a written set of rules visible in your primary workspace. Classroom teachers often develop these rules collaboratively with their students. Review the rules frequently and refer to them, or ask the child to refer to them himself, when he is struggling. 
• If you use a reward system, keep it simple and use it sparingly. Be aware that the use of rewards is highly controversial. I am a moderate on this topic. I believe that some difficult behaviors respond well to reward systems, but children who are rewarded throughout the day may become jaded by the rewards and in addition, loose their sense of internal (or intrinsic) motivation. It is my own belief that rewards should be used only to target a small number of specific behaviors, and that rewards and the systems of delivering them should be changed occasionally. If reward systems are used, I like to see them incorporated into a multi-dimensioned approach to discipline that includes creating a supportive, positive climate and emphasizes internal motivation. Finally, I would urge program leaders who would like to implement reward and punishment systems to do so thoughtfully, after thoroughly researching the most effective systems, rather than as a knee jerk reaction. A poorly implemented reward system may potentially do more harm than good. 
• Take note of positive behaviors. If you are trying to help a child refocus, you may be spending a lot of time calling her attention (and often everyone else’s attention) to her negative behaviors. If all you ever notice is disruptive behavior, eventually the child and her peers are only going to think of her as a disruptive child. Please take the time to notice what she does well and provide her opportunities to do it in an appropriate setting. Remember the child who built a tower out of her breakfast items? While I sure don’t recommend reinforcing this experiment, it would be great to later on make note of her building skills and provide her with construction materials. Make it a point to call the other children’s attention to her accomplishment (of course, you want to do this with the rest of the children as well). 
•  Do not take away active time as a punishment. Remember, these are children who need to move. Restricting their movements by keeping them in for recess or making them miss horseback riding is not going to help them succeed. I am not saying I am opposed to imposing consequences—just not consequences that are going to make success even less likely.

7. Adapt your direct instruction methods. Even though this is not an academic setting, there will be instructional time. Children need to be told how to play golf, make a pizza, build a shelter, paint a mural, or participate in whatever activities your program is carrying out. I have already discussed incorporating visual cues. There are other ways you can make sure your instructional time is successful. The steps that make this easier for struggling students will surely be appreciated by the rest of your group, as they simply make your program more interesting and accessible to everyone.

• Introduce a topic by connecting it with something the children already know and have some interest in. For example, instead of starting a mask-making activity by talking about African ceremonial masks, ask the children when they have worn masks and why. Use their comments to segue into your explanation, referring back to their comments when possible. “Shanna said she wore a dog mask for Halloween. Well, African ceremonial masks are often animal masks, but aren’t used for trick-or-treating. I wonder if anyone has an idea what they are for.”
• Don’t do all the talking. Give your students a chance to talk about what they know, as well as to raise questions. 
• Break tasks down into small, manageable components and allow frequent breaks. 

I hope that some of these hints will prove to be helpful in assisting the child who shows signs of distractibility and/or impulsiveness. At the same time, I would like to ask that the enrichment provider remember this: the fact that a child’s behavior is different does not necessarily mean it is a problem. Recently, a staff member shared this story with me. He was assisting a child with special needs in a tennis lesson. The child was constantly in motion and seemed to be looking at anything BUT the instructor. His mentor did not think he was following the lesson. However, when the tennis instructor later asked him what he was supposed to do, the child was able to repeat back the precise instructions. Thank goodness the mentor waited to see if the child understood before he intervened. Not only was his activity not preventing him from learning, it is entirely possible it was a form of self-stimulation that was helping him attend.

Some behaviors are problematic for others, even if they are not for the child, but often with a child who is really different than the pack, we, and not the child, are the ones who need some adjustments. This discussion is far from exhaustive. I have tried to focus only on those strategies that will help in enrichment programs that take place outside of the regular school day.

I have chosen a few websites that may provide more comprehensive discussions for those who wish to read more. While these sites do specifically focus on attention deficit hyperactivity disorder, I wish to re-emphasize that not every highly active or impulsive child has ADHD. I do think that the strategies that are successful with these children are applicable to children whose challenges stem from other sources. For further reading I suggest the following websites:

http://www.additudemag.com http://www.chadd.org/
http://www.helpguide.org/mental/adhd_add_teaching_strategies
htm http://www.drhallowell.com/add-adhd/adhd-for-teachers/
http://special-ism.com/creating-visuals-on-the-fly-for-unpredictable-activities/

Our November Blog will present a one hour lesson plan: A Paper Mill in a Mason Jar.