Childrearing isn’t easy for any of us. But when you have kids with special needs, the difficulty factor multiplies exponentially. Simple tasks that the rest of us take for granted are anything but easy. Mealtime, getting out of the house, keeping track of medical or therapy appointments, advocating for a child’s education – it’s all just a fraction of what these parents navigate on a daily basis.
What gets them through? We asked parents of kids with special needs about their challenges and how they work around them to focus more on enjoying their children.
For Ilana Achildiyev, a mother of three in Canton, the toughest time of day is mealtime. Her 8-year-old son Jacob has a rare, severe brain disability that has resulted in speech delays, coordination problems and behavioral issues. Achildiyev needs to spoon-feed him or he won't eat. And mealtime itself needs to be “super quiet,” she says. “If there’s too much noise, he’ll have a full-out temper tantrum.”
When things are more chaotic and Jacob becomes distressed, Achildiyev relies on a proven distraction: Jacob loves electronics, such as her cell phone or a tablet. “Right now it seems like there’s an electronic in his possession all the time. It keeps things quiet and it keeps things moving,” she says.
Rich Robison, executive director of the Boston-based Federation for Children With Special Needs, has a son, Jason, 28, who is very sensitive to the noise of overhead public address systems. Robison and his wife have learned that one person needs to stay in the car with Jason while the other goes into a store.
Families of kids with special needs often encounter a negative reaction in public. Robison recounts a time when his older daughter approached some kids who were staring at Jason. “She walked up to them and said, ‘This is my brother, Jason. Would you like to meet him? He’s a really cool kid,’” Robison says. “Someone else might have a different response and flee. She engaged them.”
Other advice from families of children with special needs:
• Make checklists of items you need to bring with you when heading out with your child: equipment, medicine, toys or gadgets to calm or distract the child.
• Join a support group with parents in similar circumstances.
• Take each day one at a time and celebrate small successes.
Deirdre Wilson is senior editor of the Boston Parents Paper.