Building a Real Support Network When Your Kid Has Special Needs

Sick of the general advice to "get support?" Here's an approach that works.

When you learn that your child has special needs, the first advice you may get is to "find social support." And it is not the last time you will hear that recommendation. When your child enters school and is getting an individualized education plan (IEP) to address his challenges and maximize his learning, it's likely that someone will suggest that you "get some social support." You've probably read a stack of books about raising kids with special needs, all of which encourage you to embrace this new reality and make sure that you "utilize social support."

The trouble is that, for many parents, and especially parents of children with special needs, this advice can seem like yet another task on the to do list – and one with a far lower priority than finishing that IEP application, figuring out which schools to apply to, or getting your child to OT appointments on time.

But the suggestion is rooted in the results from hundreds of studies indicating that emotionally sustaining social ties positively influence physical and mental health. Some researchers' findings also suggest that just as an emotionally supportive childhood has been linked to healthy development in children, social supports also affect adults' physical and emotional health. Specifically, adults who have high quality social ties have longer, healthier lives than adults who don't have them. 

But not all social support is the same. Social ties can be a positive influence – such as providing you with a safe space to talk about your emotions or encouraging you to engage in healthy physical activity – or be a negative influence, such as enabling overeating or heavy drinking. And researchers have found that when people have social ties that are emotionally strained or burdensome, their risk of heart disease and other physical illnesses increases. And, it is essential to note that science has shown that stressful or ineffective social ties can contribute to distress and isolation. 

So the generic recommendation that all parents of children with special needs get social support is both overly simplistic and potentially harmful. We know that parents of children with special needs who seek help often end up feeling emotionally isolated because the support doesn't meet their needs. In other cases, ineffective social support can heighten the risk of receiving insensitive comments from those who are well meaning but ill equipped to give the kind of support you need.

Finding the right kind of support for you
Grief specialist Ken Doka, PhD, came up with a model based on his research that recommends identifying people in your social circle by specific strengths. It works by recognizing your friends and family members as one of the three types of people. Think about how the people who are close to you typically help you. Ask yourself, "Who in my life is a doer, a listener, or a respite?

Doers help you get stuff done. When you are managing life as the parent of a child with special needs, a doer might be able to help you figure out how to complete tasks that feel too daunting to face alone. For example, you could ask an especially organized friend to sit down with you and help you create a weekly schedule that includes all therapy and service appointments as well as time for you to take a quick walk.

If you have a doer neighbor with a minivan, maybe she can pick up your other children when you need to be at therapy with one child. Know someone who loves to cook? It probably wouldn't be a big deal for him to package up an extra meal for your family once a week.

Listeners are people you can talk to without fear. A listener can listen in an open and nonjudgmental way without jumping in too early with advice or even criticism. He or she can be empathic and calm but not necessarily become reactive or angry on your behalf. Think about the people you've discussed challenging topics with in the past. Who was able to sit with you and really hear what you had to say? Often being listened to without trying to be "fixed" can be a huge relief.

A respite person is someone you can rely on for fun. With all the demands of parenthood, simply enjoying yourself can seem almost impossible. But laughter and enjoyment are an essential part of life. It might feel frivolous to take time out from scheduling assessments and getting to therapy appointments to have a little fun, but it is critical to your well-being and will help you be a much more effective parent and support for your child.

You will probably see elements of each of these in all of your close friends and family members, but one aspect usually dominates a person's style of support. Once you identify your list of support people, talk to them directly and let them know you value the kind of support they have offered in the past and are asking for more of it in the future. Then try scheduling an interaction with each one of the types weekly.

Inviting support into your life in this way builds on the strengths of those in your support network and enhances your feeling of being emotionally connected and taken care of. It also gets you over the hump of wanting help but not knowing what you need or how to ask for it – the place where so many parents get stuck. The bottom line is that most people will want to help. By figuring out how each person does this best, you can get the best kind of support you need.