Grandparenting Special Needs Children

Coping With Challenges Is a Family Affair

special needs grandchild
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Some children are clearly special needs children from their birth, sometimes with conditions that were known before birth. Other conditions only manifest themselves as the child becomes older. In both cases, grandparents face the challenge of coming to terms with the fact that their loved and longed-for grandchild has special needs.

Stages Grandparents May Go Through

Grandparents who learn that their grandchild has special needs often experience a series of reactions.

These stages can be emotionally harrowing, but they can eventually lead to a place of peace. 

  • Shock: A grandparent's initial reaction is often a mixture of shock and disbelief. Although grandparents often worry about something going wrong, it's still a shock when it actually happens.
  • Blame: A second reaction is often to try to figure out why the problem occurred. This step can be destructive to family harmony. Many conditions have no known causative factors. So while you may wonder in private whether something a parent did something to trigger the condition, it's best not to speak those thoughts aloud. Grandparents being the creatures they are, they sometimes blame themselves, for not being more involved and vigilant. That's an exercise in futility, too.
  • Sadness: Another emotion that grandparents naturally feel is sadness. They mourn for the grandchild that they anticipated having, one without major health issues. Sadness is a natural reaction, but a grandparent's sadness can become a depression that interferes with daily life. In that case, counseling may be necessary. Many medical facilities offer social services. Even a single visit with a counselor, social worker or member of the clergy can sometimes do wonders.
  • Acceptance: Every individual is different, but many grandparents find that acceptance comes fairly quickly. If you are geographically close to your grandchild and able to be involved in day-to-day care and decisions, you may accept the "new normal" more quickly than if you are a long-distance grandparent
  • Coping: Many special needs grandchildren require special accommodations or medical procedures. Grandparents can be invaluable resources to parents. Besides helping with the special needs child, grandparents can care for siblings in the family. Grandparents can provide a variety of practical services for the family, such as grocery shopping, laundry and errand running.
  • Joy: Grandparents can find joy in the times they spend with special needs grandchildren. The triumphs that they will share with a special needs grandchild may not be the ones they were expecting, but they can be joyful moments just the same. A special needs grandchild can help a grandparent experience both the giving and receiving of unconditional love.

Every grandparent will experience these stages differently. It's important that grandparents negotiate the first three stages as briefly and as privately as possible, so that they can move on to the more positive stages. 

Working With the Whole Family

Your grandchild was born into a family unit.

It's important that family members work together to create the best possible outcomes for the special needs child without ignoring the needs of other family members. 

First, it is important for grandparents to follow the lead of the parents. The advent of a special needs child requires some adjustment on everyone’s part. If the parents are open and sharing about their situation, the grandparents can be also. Some parents prefer to keep their struggles private, initially at least. Grandparents must respect their wishes.

Second, grandparents must inform themselves.  Find out everything that you can about your grandchild’s condition. Use the Internet, by all means, but stick to sites that are clearly authoritative. Don’t get caught up in a lot of personal accounts and blogs; you don’t need that kind of personal narrative at this point. Do check the library or bookstore. Grandparenting a Child With Special Needs is one title to consider.

If possible, make learning about your grandchild’s condition a family affair. If feasible, attend a conference with other members of your family, or volunteer to babysit so that other members of the family can attend. However you end up working it out, you are sending the message that the whole family is in this situation together.

Never suggest that something that the parents did or did not do might have caused your grandchild's condition. The parents have already had these thoughts and do not need any additional guilt. If the mother used alcohol or abused drugs during her pregnancy, someone needs to intervene before her next pregnancy. In other cases, do not speculate about what might have caused your grandchild’s condition. You will only cause pain.

In other ways, it's a good idea to cut family members a little extra slack. Realize that the stresses of dealing with a special needs child may cause family members to be more volatile or more sensitive than they would otherwise be.

Moving Forward

The best thing you can do for yourself is to spend time with your grandchild. You may have some hesitancy about caring for and interacting with a special needs child, but the best remedy for that is to jump right in. Follow all instructions that are given by the child’s parents or doctors, but don’t be intimidated. Your special needs child needs you and the love you have to offer.

Once you have gotten to know your grandchild, you can offer the parents a respite from their duties. Try to get them to spend some time together. A special needs child benefits most from two parents who are committed to the marriage and to the child.

Long-Range Strategies

Those who are involved in the care of a special needs child often get stuck in fire-fighting mode. They are so focused on everyday challenges that they find it hard to take the long view. If you are the grandparent of a special needs grandchild, you are in for a long haul. You need a long-range plan.

First, you must take care of you. ​Letting yourself become physically rundown or emotionally strung-out won’t help anyone. Let the housework go or opt out of volunteer work, but don’t give up those activities that keep you strong and well-balanced. If you have a fitness regimen, be certain to keep up the routine. You will need to be at the top of your form to meet the challenges ahead. If you are a sociable person, keep up your contacts with your friends. They will help keep you sane.

Second, be smart with financial assistance. If you have money and a special needs grandchild, it's tempting to throw all your financial resources into an effort to help. Don't do that before checking out other sources of assistance. And get advice that will help you maximize whatever financial assistance you are able to give.

If you have a special needs grandchild who will qualify for disability when he or she turns 18, you must be careful not to do anything to disqualify your grandchild. A disabled person can receive Supplemental Security Income and Medicaid upon turning 18, but currently cannot have more than $2,000 in assets. Special needs trusts can be set up that do not disqualify the grandchild from governmental assistance. The bottom line is, if you have the ability to financially assist your special needs grandchild, be sure to consult an attorney who specializes in disability law before you actually give away any of your money.

In Summary

Remember that the key word is special. The challenges may be especially difficult, but many grandparents who have experienced grandparenting a special needs grandchild report that the rewards are truly special.