The Very Real Burden
ofof Invisible
Disabilities B
eing a parent of a child with any
disability, physical or emotional,
comes with its challenges. When
out in public, most parents would
hope that a stranger will stop to open the door
for a child in a wheelchair or have patience
when talking with a teenager who has a speech
impediment. But what if the challenge isn’t
so obvious by looking at or starting a friendly
conversation with a child?
I am a mother to a son diagnosed on the
autism spectrum disorder (ASD) and with
attention deficit hyperactivity disorder
(ADHD). They are neurological differences.

When my child is next to you in the swimming
pool, you may have no idea. Why do I feel the
need to cower or grab my children and run out
of the pool when my 9-year-old is throwing a
toddler-like tantrum in the water?
Defining ‘invisible disability’
While invisible disability is not a clinical term,
it often refers to a child’s needs, diagnoses or
disabilities that aren’t immediately obvious
by looking at a person. This invisibility
can create extra challenges for a child and
families, since the symptoms may be judged
or misunderstood by friends and family due to
a lack of understanding.

Laurie Chaikind McNulty specializes in
helping children and families find tools that
work for their needs.

“This may require greater focus on social-
emotional development depending on the child
20 Washington FAMILY JULY 2022
and family,” says Chaikind McNulty, LCSW-C,
a clinical social worker at Jonah Green and
Associates, LLC in Kensington, Maryland.

Chaikind McNulty says that numerous
struggles exist for the parents of patients
diagnosed with invisible disabilities such as
ASD and ADHD. For example, parents often
express feelings of isolation from other
families; disappointment, which comes from
changing expectations and hopes and dreams
they had for their child; exhaustion from
constant management of care; confusion with
managing expensive and complex health care
systems; variability in therapeutic progress
and hard feelings due to challenging behaviors.

“Additionally, there is often tremendous
worry for their child, both now and in the
future, as well as the impact on the family
overall,” Chaikind McNulty says.

She often counsels these parents on the
personal decision of when and how they
might share with friends and family about the
struggles they face with their child. Before
making any moves to share your struggles,
Chaikind McNulty recommends making
sure you feel safe and supported and have an
established trust with these individuals, or at
least feel fairly certain that these confidants
will respond in a helpful way.

“Sharing vulnerable details with others,
when in a compassionate safe relationship,
can be a powerful way to reduce shame,
gain support and build community and
understanding,” she says.

As a parent of a child with an invisible
disability, I can confirm the feeling of
hesitation that comes with public outings as
your child’s behavior is so unknown. Maybe it
will be a good day and your child will embrace
being at the park and participate in tag with
his siblings and other children. On the other
hand, what if another child pushes him by
accident or doesn’t play by the rules? Will
your child scream? The best way to prepare
for what could happen is to make a plan before
leaving the house.

This process may involve thinking ahead
about only going to a place that gets crowded
at certain times of the day to avoid your
child getting overstimulated or trying to
avoid places that historically have behavioral
triggers for your child. For example, if loud
noises set off your child, avoid a movie theater
or an arcade.

Also, think about packing tools for
distraction and soothing in case your child
gets upset, says Chaikind McNulty. Another
suggestion is to plan the outing with another
supportive adult who can jump in if you need
an extra pair of hands.

An exercise in self-compassion
If your child engages in a behavior that is
embarrassing, take a deep breath and engage
in self-compassion. You will get through this
tough moment.

“It is critical to create a team that can help
guide you, support you and rally around you,”
SKYNESHER/E+/GETTY IMAGES
BY JACQUELINE RENFROW



says Chaikind McNulty. “Even if you don’t immediately find those
you trust, keep searching because you and your family deserve a
community through this journey. Also, engage in self-compassion.

This journey will be full of wonderful loving moments and very,
very challenging ones. All that will be enhanced and helped with
self-compassion.” Marie Wei of Rockville is a mother to 7-year-old Parker, a
child with ASD.

“The hardest part is the fact that it truly is an invisible disability
until it’s not,” says Wei. “People often think that a child’s behavior
is acting out or misbehaving. In reality, autism is a disability that
causes the child the inability to control certain behaviors.”
And Wei stresses that beyond a parent’s difficulty to cope
with embarrassment, a mom or dad also has to worry about a
child’s feelings.

“Just because my son doesn’t talk or play with your children the
same way, it doesn’t mean that he doesn’t want to have friends,”
Wei says. Like many other parents, Wei hopes that once adults
gain an understanding of children with invisible special needs, they
can pass on this understanding, compassion and empathy to their
children as well.

“Will you please teach your children to have extra compassion
to include children with special needs? Will you please teach your
children to learn what my child likes so they can gain his trust,
respect and desire to play with them?” Wei asks.

But Wei does try to take time to appreciate the positive attributes
and accomplishments of her son.

“Be patient. Look at the growth your child has made. Try not to
compare him or her to others, but be proud of where your child is
now,” Wei says. “You have an amazing kid who is so special.” n
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Parenting a Child with an
Invisible Disability
We asked several mothers to express the emotions and
thoughts that come to mind as parents of a child with an
invisible disability. Below is some feedback they shared:
• Judged.

• Isolated and left out.

• Feeling of a lack of empathy from others.

• Not in control.

• Always tired.

• Constantly advocating.

• Fear of failure.

• Always on edge.

• Fear of my child being labeled.

• Always working harder behind the scenes than
other parents.

• Wondering if my child will ever truly fit in.

• Struggling to see my child’s positive attributes.

• Fearing failure without school and professional supports.

• Saddened that no one may get to know my child beyond
his or her diagnosis.

• Wondering if my child will hold a job or become
capable of functioning independently.

• Missing out on the typical childhood experiences.

• Struggling with when to disclose the disability for
support versus staying silent.

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