How to Support Special Needs Families

Someone you know is shocked, confused and hurting. They received a diagnosis indicating their child has medical problems. Whether teacher, health professional, friend or relative, you want to help.

Besides giving them the comfort of your presence, what can you say?

"It's like being in a foreign country,: said Judy Perry, a marriage counselor at the Atlanta Relationship Center. "The parents are trying to assimilate the diagnosis and they are throwing 13 syllable words at them."

Often the parents can't even articulate what they are feeling, said Perry, whose son has autism. As part of her work, Perry conducts therapeutic puppetry and play therapy sessions.

To support the special needs families emotionally, first determine their needs, Perry explained. Then offer some of the following, she suggested:

¨ Affirmation

¨ Reflective listening

¨ Validation

¨ Emotional support

¨ Household support: errands, meals babysitting

They don't need:

¨ Advice, medical or otherwise

¨ Blame

¨ Condemnation

¨ What ifs

¨ Doubting their decisions

¨ Criticism

What to say

Sometimes just acknowledging the positive job of parents of special needs children are doing is plenty, said Rachael Wittenberg of Atlanta. Wittenberg's daughter, Liam, 5, has traumatic brain injury and uses a power wheelchair.

Experts say that using some of the following phrases can be helpful:

¨ "You're doing the best you can in a very difficult situation."

¨ "He appreciates all you do for him."

¨ "You're doing a great job."

¨ "We love you."

¨ "You're the best parent for her."

This simple acknowledgement can be affirming and comforting, Wittenberg said.

"Since doctors are not in our homes living with these things, you may not get support from professionals," she said.

Diagnosis-specific groups and parent-support networks like FOCUS and Parent to Parent are good sources of emotional sustenance, she explained.

"Special needs families tend to isolate and freeze emotionally as a form of survival," said Debra McElhaney, a licensed marriage and family therapist in Atlanta for 25 years. "I think what people need to understand is that it is ongoing, they are going through chronic grief."

Give permission to grieve, be angry

You can make comments and gently pose questions such as these:

¨ Does it feel unfair?

¨ It's ok to grieve.

¨ It makes sense to me that you must be hurting right now.

¨ You're allowed to grieve the loss of your dreams of a healthy child.

Allow the family to express their grief, McElhaney said. Anger is part of grieving. It is a normal response and can be a great catalyst, she explained.

Giving permission for anger with statements including the following can be helpful, she suggested:

"It's ok to be angry."

"Do you every get angry with God?"

"It's all right to cry."

"This must make you angry sometimes."

Although offering emotional support for families with children experiencing ongoing medical problems can be awkward, experts said it is worth trying because in most cases, it helps people cope.