When a child is conceived, parents begin to fantasize and envision the child’s life. However, the diagnosis of a disability violates these narratives in powerful and passionate ways. Previous dreams become irrelevant. Expectations are turned upside down. The life stories that parents envision for themselves and their child are destroyed. While a great deal of information is written specifically for parents coping with the diagnosis of a child, there is not much advice published for friends and family trying to help these parents cope with their grief. Consequently, they feel helpless.
What can you do to offer a helping hand? How can you understand the complicated emotions of these parents? How can you support these families in times of crisis? Use the following advice to help you understand the grief of parents and to help comfort and support them.
- constantly offer to help
- be patient
- acknowledge the siblings
- completely accept the child with special needs
- give lots of love and compassion to parents
- avoid talking about the child
- tell parents how they should or shouldn’t feel
- tell parents, “God only gives us as much as we can handle”
- say, “I admire you” or “You are so noble”
Offer to babysit the child so the parents can take a much-needed break. Cook a meal, buy groceries, walk the dog or help clean the house. Offer to take the siblings out for pizza or ice cream. Tell them that you are just a phone call away if they need anything — and then call them often to check on them.
It can be extremely difficult for parents to work through their grief. In the beginning, all they can see are the things that their child can’t or will not be able to do. If they have always been independent or overachievers, it may be hard for them to accept your help right away. Persevere, and eventually, they will be ready to accept your help.
In the aftermath of a diagnosis, siblings tend to get lost in the turmoil. They typically receive decreased parental support and attention; experience increased stress at home; feel guilt about being angry with their sibling; and have concerns about future embarrassment and teasing. If you visit, take something special for the brother or sister. Pull them aside and ask how they are doing. Carve out some one-on-one time with them.
Unconditional love and acceptance is vital. Remember that no matter what kind of special needs the child has, he or she is still a child who wants to be loved and accepted. He or she deserves to be happy and to belong, and needs constant hugs, laughter, music, and friends.
At times, parents feel very alone, isolated and different. Be sure to touch them and to touch their child. A hug, a squeeze, a look into their eyes or holding their hand lets them know that you care. This makes them feel happy, sane and loved.
Be sure to consistently ask the parents how their son or daughter is doing. They may not answer in the beginning — or they may spill their guts. Either way, they remember those who asked and can’t seem to forget those who didn’t.
Parents feel what they feel. In the early days and months, they typically struggle with raw emotion that lies near the surface. As time goes on, their coping mechanisms get stronger and their initial feelings of shock and despair begin to dissipate. Telling parents how they should be feeling and reacting will only hurt your relationship.
Parents are just trying to survive from one day to the next, especially in the beginning. Telling them that they should be able to handle their child’s diagnosis is an additional load to put on someone, who often doesn’t feel like he or she is handling anything well at all.
Unless parents set out to adopt a child with special needs, they didn’t want this to happen. Plain and simple. They don’t feel noble. At times, they even feel trapped and devastated. Showering them with compliments of admiration will only make them feel more isolated and lonely.
If a child doesn’t look typical or acts differently, parents are very aware of this. In fact, that’s all parents can see at first. Find something positive to say. For example, something as simple as, “What beautiful eyes” or “What a gentle soul” can be music to their ears.
Parents raising a child with special needs must work to rebuild their dreams to accommodate the reality of their child’s disability and limitations. They must re-imagine the life their child will lead. What they cannot do is spend a lifetime mourning what might have been. Rather, they must look at loss as an opportunity for discovering something very different, but perhaps equally wonderful. As a supportive and caring friend or family member, you can help these parents change their perception from the tragedy of having a child with disabilities to redefining their understanding of what a perfect child actually is–while at the same time, helping them cope and giving them someone to lean on.