Babble is partnering with PACER Center to help parents better understand and navigate the needs of children with mental health and behavior issues. This month, we’re talking about how parents can cope when their child has an ‘invisible’ disability.
Summer is that magical time when the kids are out of school, the days are more relaxed, and there are often opportunities to take a special family vacation. But for families with children who have less obvious disabilities — a mental health or emotional or behavioral disorder, for example — a trip can spell disaster, particularly if there is an airport involved.
Jade’s 7-year-old son Anthony has autism, and he functions best when there is plenty of structure built into his day. During the school year, the regular routine makes things easier, but unstructured time during the summer is always challenging for Anthony.
Last July Jade decided to go to Colorado to visit her sister. Even though Anthony was excited to see his cousins, Jade knew it could be a challenging situation. She did her best to prepare him for the journey and packed a few of his favorite foods and toys in her carry-on bag. They arrived at the airport early and made it through security without a hitch, but when they reached the crowded gate area, Jade could see her son was struggling to stay calm.
At first glance, it’s difficult to imagine that this little blonde-haired boy with the deep blue eyes could be anything other than angelic. While Anthony does display certain tell-tale signs of autism — the way he flexes his hands awkwardly when excited, the rigid posture, the darting eyes that never quite look at you — in a crowd he looks quite “normal.” The other passengers waiting for the flight to Denver had no idea that Anthony could erupt at a moment’s notice.
After a long delay, the announcement finally came: “Attention in the gate area. We are now ready to board all passengers with disabilities and anyone needing extra time or special assistance.”
This was Jade’s cue. But just as she was about to hand the gate agent their boarding passes, Jade suddenly heard a very loud voice coming from behind her.
“Look at that mother up there with that little blond kid,” barked the middle-aged woman in the red dress. “Who does she think she is? There isn’t a thing wrong with that child!”
Jade was mortified. It felt like every eye at the gate was on her. As much as she wanted to offer the woman a few choice words, Jade turned away and quietly walked down the jet way with Anthony. As the parent of a child with an invisible disability, Jade was accustomed to being judged for her parenting skills and her child’s often unruly behavior.
If you are the parent of a child with an invisible disability, here are some ideas to help you cope in situations like this.
If a situation is likely to be sensory overload for your child, plan ahead to help him or her cope. Smart phones, iPads and other electronic devices can work well as a distraction, especially if the child uses earbuds to block out other noise. Games, music and movies can keep your child busy and minimize potential triggers.
Have a Plan B
Just because a particular technique helped keep your child calm last week doesn’t mean it will work today. Despite careful planning, children with disabilities can surprise us with unexpected behavior so a Plan B is important. Some families use a technique called ‘instant amnesia’ where the parent offers the child an unexpected and welcome surprise — a special snack for example — that quickly redirects the child’s attention.
Don’t let embarrassment get in the way
Parents are sometimes embarrassed by their child’s behavior but you can’t let that impact his or her safety. Be prepared and develop a crisis plan. It might be a ‘hold’ or hug for your child, or perhaps a quick escape into a quiet bathroom. Having a plan can prevent an over-reaction on your part and help you slip away from onlookers.
Always be positive
Yes, it’s not easy in the heat of the moment but many parents find that being positive makes a big difference in helping to diffuse difficult situations and calm their child. Praise and rewards work well with children.
Practice your “just in case” speech
There are many things Jade could have said to the woman in the airport — who wouldn’t like to offer a snappy comeback? — but it probably would have escalated the situation instead of defusing it.
Most parents ignore the critics, but it helps to have a ready response just in case: “Our child is wonderful,” you could say, “but as a result of his disability he has a lot of needs that aren’t always obvious. Thanks for your patience.”
If you are a bystander waiting in a crowded airport and a scene like this unfolds in the vicinity, please don’t jump to conclusions. Appearances can be deceiving and just because a child looks “normal” doesn’t mean that is always the case.
Support and compassion go a long way in helping children and families who may be facing challenges the rest of us know nothing about.
Do you have a child with an invisible disability? Based on your personal experiences, are there words of advice you could give parents or bystanders? Please share your stories and offer ideas that might help.