Being 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 the 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 and family,” says Chaikind McNulty, LCSW-C, a clinical social worker at Jonah Green and Associates, LLC, in Kensington, Maryland.
Chaikind McNulty says 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 sharing their struggles, Chaikind McNulty recommends making sure parents 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,” 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.”