Amanda Lamb: Atypical

Recently, a follower of my weekly blog pointed out quite diplomatically that while parenting is challenging for everyone, it is especially challenging for parents of children who have special needs.

Heather Jolley is the mother of three daughters with specials needs. Her oldest daughter, Abigail, is 14 and has an autism diagnosis. Her second child, Audrey, is 13 and was born with cerebral palsy. Her youngest daughter, Allie, is 11 and has been diagnosed with autism and Retts Syndrome.

Jolley, who is nurse, is not able to work because the daily needs of her children are so time-consuming. She says she spends most of her days on “appointment management,” organizing and driving her children to various medical appointments for treatment and therapy.

Heather and her husband Jason moved to Ohio and have very little support because their family is still here in North Carolina. What she wants the parents of typical developing children to know is that it is full-time job to be the parent of special needs children. She can’t always do things that she would like to do like volunteer at school because she doesn’t have the time and her children can’t always handle stimulation.

“If we're somewhere with our children and we have to leave all of a sudden, it's most likely because of the behavior of one of the kids. Know that we don't get very much sleep. We're, you just going day-by-day,” Heather says.

Heather has friends with typically developing children, but sometimes it’s difficult for her to express what she needs from them.

“If you have a friend that has special needs children, you know, sometimes it's much harder than others. So, if you know, somebody is struggling during a hard time just to try to be supportive and help if you can," she said.

It’s also hard for Jolley not to compare her children to her friends’ children.

“When you have friends who have typical children and they are doing things your kids are never able to do, you want to celebrate your friends’ kids, but it kind of burns a little bit too because you know your child's not ever going to do that," she said. "So, it's a hard mix as a as a parent.”

What isn’t hard despite all the challenges the Jolleys face is loving their children for who they are, not worrying about who they are not.

“They teach you more than you ever teach them," Heather said. "I've learned so much from them. I mean, more than I would have ever learned had I gotten a special ed degree.”

And like all of us, they have dreams for their children. They hope Abigail will eventually be able to go to a day-program outside their home and have some independence once she finishes school. They expect Audrey to be able to attend college with some logistical help. And their youngest daughter—“Allie has a condition that could limit her life span and so with her we just want her to be as happy and healthy as long as she can be. So, we don't really look too far in the future with her.”

And so, while many of us plan the futures of our children based on the traditional paradigms of our culture—graduating from high school, attending college, getting a job—we should remember these paths are not available to everyone. And not every parent has the luxury of these expectations.

Thanks, Heather for giving me and hopefully others who read this blog a wakeup call. It's a reminder that parenting, like so many of the roles in life that we play, is not-one-size-fits-all. It can be a complicated and challenging journey that begins and ends with love.