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.