From the April 2015 issue

Parenting Your Child with Special Needs

10 things every parent should know to make life better for you and your child.

You know the list: Do the laundry, make dinner, help with homework … it’s enough to keep any parent on his or her toes. But when your child has special needs, the role of parent can be even tougher.

Between therapy sessions, behavior charts and IEP meetings, it can be easy to lose sight of the big picture. Dr. Angela Tzelepis of The Children’s Center, a clinical psychologist with nearly 30 years of experience, and Lisa Price, co-founder of Jack’s Place for Autism Foundation, have teamed up with UnitedHealthcare to offer these top 10 tips to help make life a little easier for you and your special child.

1. Accept the diagnosis. It’s important to recognize and accept when something is going on developmentally with your child, Price says. “It doesn’t hurt anyone, by any means, to have your child tested,” she says. “Early diagnosis is paramount.”

Price acknowledges that after getting a diagnosis many families feel their hopes for the future are dashed. “You have to put the pieces back together, redefine what the future will look like,” she says. “Once you receive a diagnosis, start educating yourself as a parent and get help.”

2. Build a support team. In addition to finding appropriate interventions and therapies, parents should seek out a support system including family, neighbors, teachers and physicians.

Also consider a counselor for yourself or for you and your spouse. “This is an issue that divides many families,” Price says. “The divorce rate is very high in the autism community.”

3. Get plenty of sleep. Make sure everyone in the family – you and your kids (special needs or not) are getting enough zzz’s. “People often don’t think about kids’ sleep,” says Tzelepis. “Particularly when you’re working with kids with challenges, the sleep is often disrupted. If you have a child getting insufficient sleep, it’s going to amplify the problems.” As a general rule, preschoolers need 12 hours of sleep, school-age children need 10 hours and adolescents need eight hours.

4. Document everything. “I encourage every family to do things through email, so there’s a paper trail for everything that’s occurring, especially when working with the school district,” says Price. “You should be keeping a binder that has all the information in it from the first written diagnosis, so you can refer to that at any time.”

5. Be consistent. Consistency is key, including providing consistent discipline and immediate consequences, Tzelepis says. “That consistency has to be across caregivers,” she says, pointing out that ideas about discipline often vary between mom, dad, grandparents and others involved. “That creates a lot of confusion for a child.” Resist the temptation to give in to nagging or a meltdown, Tzelepis recommends. “Your child needs that consistency in order to be able to function, learn the rules and learn to change behavior,” she says.

6. Don’t blame the child. Especially when it comes to behavioral challenges and emotional challenges, “people tend to blame the child,” Tzelepis says. Focus on understanding that your child has a disability that may not be visible and requires a special type of parenting, she says.

As challenging as it may be, staying calm is so important, Tzelepis says. “Calm down, stop and think before you react to the child,” she says – and pick their battles. “Not everything needs to be addressed. Prioritize the things that are of most concern.”

7. Don’t hide away. Forget about the possibility of judgmental stares and go as a family to that restaurant you’ve been wanting to try, Price advises.

“I was adamant that our son not be shut in the house and away from the world. People were going to have to accept him for who he was,” she says.

8. Take care of yourself. “That really is important,” Tzelepis says. “Maybe parents can’t take a weekend away. But at least once a month, they should get out. And when they’re alone, they should not be talking about the children.” For stay-at-home moms, Tzelepis suggests finding a caregiver for a few hours a week, so mom can go to yoga or the gym. “Not grocery shopping,” she says.

9. Focus on quality of life. Parents often come to Price with questions about autism “cures” they found online. “I feel like I’m always the bearer of bad tidings – people who come to me with hope because they see all of these things on the University of Google,” she says.

Her advice? “Let’s focus on quality of life: how much we can do for you as a family, how much we can do for your child, and let’s be hopeful that down the road there are some therapies or interventions that are going to improve the quality of life for our kids,” she says.

10. Show your love. Set aside time to share quality, positive moments with your child. “There’s so much focus on the problem, the negative behavior,” Tzelepis says. “Take time to really enjoy being with your child and spend positive time together. Kids with these kinds of needs hear so much negativity that parents can forget to shower them with love and affection and positive time.”

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