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.