Parents offer advice on how to be supportive

Carol Spencer of Exeter Township listens as her son, Peter, 11, reads a book about animals. Peter has autism.
Editor's note: Second of two parts

Carol Spencer is trying to teach her 11-year-old son Peter, who has autism, not to steal food off other people's plates.

But when she scolds him for grabbing a roll from someone at a dinner party, the person typically responds, "Oh, it's OK."

"They're trying to be nice, but it's not OK," said the Exeter Township mom, 42. "I'm trying to teach him appropriate public behavior."

Spencer said most people have good intentions, but don't know how to help parents of children with intellectual disabilities.

Here are ways Spencer and other local parents whose children have special needs say others can support them:

1. Trust our judgment

People sometimes interfere when Michael and Donna Wolf, Spring Township, try to discipline their 15-year-old son Kyle, who has Down syndrome.

"Sometimes people will say: 'Oh, but he has Down syndrome. You don't have to give him a timeout," said Donna, 48. "Oh, yes I do! He knows right from wrong. But people look at the physical features and expect a little less."

Elizabeth Hemmings, whose 13-year-old daughter Jazmine also has Down syndrome, said people underestimate how much her daughter understands.

"I treat her like all my other kids," said the 39-year-old Wyomissing mother of five. "If she's gonna be grounded, she's gonna be grounded.

2. Stop using the "R" word and other demeaning language

Nothing burns Ontelaunee Township mother Jessica Jones' ears like the word "retarded."

When she hears that offensive word or sees it on Facebook, it's usually not directed toward someone with an intellectual disability.

More likely, it's used as a synonym for stupid or annoying in sentences like, "My boss is being retarded."

But the word gets to the 35-year-old, whose son Mathyas, 7, has autism.

"It's sad, but a lot of parents use that word and set the example for their children," Jones said.

Some insensitive language is less obvious, having more to do with phrasing than the words themselves.

For example, Donna doesn't like when people refer to Kyle as her "Down syndrome child."

"It's 'child with Down syndrome,' " she said.

Someone who refers to a child as a special-needs, disabled, Down syndrome or autistic kid defines that child by the disability, Donna said.

Saying someone has a disability, on the other hand, recognizes the person first.

3. Be gracious at the grocery store

Fleetwood mom Charlene Schlegel said strangers are merciless when her 10-year-old son Andrew, who has autism, acts out in public.

"It's either parenting advice or evil stares," said Schlegel, 29.

People are quick to judge when they have no idea why a child with a disability is upset, said Ned Kauffman, whose son Brian, 5, also has autism.

"People give you dirty looks and say, 'Learn how to control your child,' " said the Sinking Spring dad, 45. "Other people just look the other way."

A little compassion means the world to Sinking Spring mom Luci Schaeffer, 36, whose 11-year-old son Adam has autism.

"Someone reached out to us recently and said, 'I understand.' That just means so much," Schaeffer said.

When people react negatively to Ruth Butler's 5-year-old son Liam, who has Fragile X syndrome - the world's leading cause of inherited mental impairment - she hands them cards with information about the disorder.

"It's easier for me to do that then try to explain tons of info myself," said the Shillington mom, 41.

Schlegel said she's heard that concept works well for some families, but feels people should be nonjudgmental enough not to require explanations.

"I don't want to put a T-shirt on my son," she said. "I don't want to hand out cards every time I go out."

4. Include our children in activities and conversations

In the 13 years of her life, Abigail Henry, an Exeter Township teen who has Down syndrome, has been to two sleepovers.

Abigail's mother, Nancy Henry, 45, said she understands it might be difficult for families to host her daughter overnight.

But Abigail sees her older sister go to slumber parties all the time and wishes she could be included, Henry said.

"Birthday party invitations don't come that frequently either," she said. "I just think kids with disabilities should be included in everything."

Hemmings said she'd like to see more people engage her daughter in conversation.

People often ask Hemmings questions in front of Jazmine that Jazmine could answer herself.

"Sometimes people ask me, 'Oh, how's she doing?' She can answer you how she's doing," Hemmings said.

5. Offer assistance

Carol McCullough doesn't like to ask, but she appreciates when people insist on helping her out.

One of the best ways they can help the Mount Penn mom is by offering to watch her son Patrick, who has Down syndrome.

When McCullough's oldest son, Joseph, comes home from college, he often tells his parents to let him watch Patrick so they can leave the house.

But when Joseph's not home, McCullough doesn't know who to call.

"Since Patrick's 17, I don't want to ask a teen who's 13 to baby sit him - that would be inappropriate," said McCullough, 45. "So it's kind of difficult because we have to find an adult."

People can also help in smaller ways when they notice a child with a disability is having a hard time, said Sinking Spring mom Thaeda Franz, 42, whose son Tad, 19, has autism.

"Maybe if you're in line at the grocery store, you could let that parent and child go first," she said.

6. Be sensitive when talking about your kids

Donna understands that all parents become frustrated with their kids sometimes.

But some complaints are hard to hear from a parent whose child doesn't have a disability, she said.

"They say, 'Oh, I have to drive him around everywhere,' " she said. "But one day, their kid will have their driver's license. I doubt Kyle will at 16."

Parents' gripes about their children's perceived shortcomings can also be upsetting.

"Sometimes someone might say, 'Oh, she didn't make the cheerleading camp,' and I think, 'Oh, my gosh, I was so happy when my son read a new word this week,' " Donna said.

Contact Beth Anne Heesen: 610-371-5084 or

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