November 27, 2023

Listen, Learn, & Support For grandparents

Written By: Victoria Safdieh, Founder of CARE

The birth of a grandchild with special needs, may also be the death of a dream of the perfect grandchild.

Before you recoil in horror at these words, think of the parents who eagerly count their newborns fingers and toes only to be dealt the blow that their children are anything but normal. Think of the average person bragging “my son the doctor” or “my granddaughter the singer.” We pray for healthy children, but that’s not always the reality, and it’s the new reality that parents and grandparents must learn how to adjust to. For these parents, grandparents, aunts, uncles, and other family members to grasp the joys and difficulties of raising a child with special needs, they must let go of their subconscious or conscious plans for the child’s life. It is normal to feel sad or angry, as we are filled with love for this tiny baby. Acknowledging one’s feelings, and grieving for the loss of that dream, may make it easier to cope with the reality of being the extended family of a child with special needs.

Grandparents, aunts and uncles should be there to support the baby’s parents in every way. Learn—one of the most important things that family members can do is learn about the child’s disability, or special needs. The Internet is a great source of information, as well as misinformation, so be careful, because it may not be as accurate as you think. Begin with sources like hospitals, doctors, and advocacy organizations such as C.A.R.E. for Special Children. Go with the child to his/her doctors’ appointments, and listen carefully to what the doctor says, and ask questions. You and the parents are now learning a very specialized language. The more you know, the easier it will be to converse. Learning is important for emotional health as well, the more you know, the more confident you will feel in your ability to help. Listen—even the most discreet family members sometimes find it difficult to keep from offering unsolicited opinions and advice, but therapists and social workers agree that listening to your children, the child’s parents, and validating what they feel is more important than offering advice.

Grandparents and well-meaning family members need to take their cues from the child’s parents. You may not always agree. Grandparents anticipate the arrival of grandchildren, and to a lesser extent, aunts and uncles look forward to the arrival of nieces and nephews. Perhaps for that reason, a special needs diagnosis can be devastating in their decisions, but they are theirs to make. Support from grandparents and other family’s members is crucial for helping the parents cope. By listening and ascertaining the needs of the child, the grandparents can learn where to place themselves in the care/decision making and discussions. Family members who want to be involved in the child’s care and life, can and should make the effort, by offering non-judgmental assistance, or by not saying or doing anything at all, but just being there for the child and parents.

While there is no “how to” list for grandparents or parents, there are several tried and true approaches. They have the potential to add positively to the parents and special child’s life. Spend time with the child. If the baby needs special care, ask how to help. As the parents feel comfortable, try to care for this child the same way that you would care for your other grandchildren, nieces, and nephews. Offer to babysit or take care of the child. Parents need time for themselves. Once you are comfortable and your children are comfortable with your care for the child, offer to help out. Just offering will make them happy, knowing that they aren’t alone to deal with this challenge.

Do something special with the child. Every child benefits from special time with grandparents and others who love them. Maybe this will be the young person who loves to bake with you or go shopping.

If you can, offer to help financially. Even if your children have financial means, a little extra cash or financial help in this situation can be greatly appreciated. Copays and other expenses add up quickly. It doesn’t have to be a lot, but every little bit helps. Offer to buy takeout dinner for your children’s family or pay a babysitter so the parents can go out themselves and get a break. Whatever it is, it will also help them feel supported.

Consult with an attorney or advocacy organization before putting money in the child’s name. Some children will need expensive care for their entire lives. Before putting money in the child’s name, consult with someone who understands the financial and legal implications of providing significant amounts of money for the child’s care.

While you may be trying to do a good thing, you might jeopardize his/her benefits. Offer specific help. Daily routines are much more complex for a child with special needs. Maybe you can alleviate some of the burden the parents feel by picking up the child’s siblings after school, or simply making dinner once a week. Again, every gesture is a big help.

Finally, no matter how difficult the situation, try not to give into despair. Whatever you are feeling, the child’s parents are feeling much more intensely. Let go of the things you can’t control, and focus on what you can do.


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