When I was asked to write this article, it brought back wonderful memories of the help that my mom and dad gave me, my husband and my daughter over the first 24 years of our daughter’s life. My parents passed away prior to Jen’s 25th birthday. The help they provided, especially in the first 10 years of Jen’s life, was invaluable. I don’t know how my husband and I could have raised Jennifer as well as we did without the help and guidance of my parents.
Jennifer, who is now 52 years old, was born with Tuberous Sclerosis (TS). TS is a genetic condition that results in seizures, heart and kidney complications, and in some cases developmental delay. Jennifer, unfortunately, had all the adverse health conditions associated with TS as well as a moderate to severe developmental delay. When Jen was around 4 years old, she was also diagnosed as having Autism. My husband and I, as young parents, were, on occasion, overwhelmed by Jen’s health and educational needs.
My parents, from the very start, were always there for us. They were not wealthy, so they were limited in helping us financially, but they were always there for us in other ways. They were always there to lend a sympathetic ear, laugh with us, cry with us, offer us relief from the day to day responsibilities of raising a child with special needs and advocating for Jen when needed. Their time, love and attention that they showered on Jennifer were precious gifts.
I credit my parents’ help with the fact that my husband and I survived this challenge as a couple and with our becoming the kind of parents Jen needed in her life. As a former social worker and currently in my position as an attorney, I see similar situations among my clients where having supportive grandparents has made all the difference in making one’s life experiences in raising a special child a positive one. Having the love, acceptance and support of one’s parents, makes it easier to raise a child with special needs.
I’ve gleaned the following DO’s and DON’Ts list based on my own experience and that of my clients.
- Accept your grandchild for who they are.
- Be understanding of your grandchild’s behavior.
- Support your child’s parenting decisions.
- Become as knowledgeable as you can about your grandchild’s condition.
- If distance permits, spend time with your grandchild.
- Provide respite for your adult child by offering to sit for your grandchild when possible.
- Offer to take your grandchild to appointments or offer to accompany your child and grandchild to doctor’s visits, school meetings, etc.
- For long distance grandparents, stay in touch via telephone calls, letters, send cards of encouragement and humor and/or send gift cards for housekeeping help, massage, dinner out or other luxury that your adult child may not be able to afford.
- Offer financial assistance when able to do so. Grandparents can pay for any amount of medical or education services when paid directly to the provider for services without incurring gift tax consequences.
- Get financial advice from a financial planner who is familiar with special needs financial planning and plan early for your grandchild’s future.
- Change your wills or living trust documents so that any share of your inheritance that may be distributed to your grandchild with special needs will be distributed to a properly written SPECIAL NEEDS TRUST.
- Consider a “2nd to Die/Survivorship” life insurance policy to fund a special needs trust to maximize resources in a special needs trust. This type of policy is little known but is ideal for funding a special needs trust.
- Consider signing a POA that protects some or all of your assets for the benefit of a special needs child or grandchild if long-term nursing home care is needed.
- Don’t deny your grandchild’s condition – denying it exists doesn’t make it less real.
- Don’t judge your child’s parenting skills. Parents who have children with hyperactive or behavior disorders need your support to help them cope with the stresses their child’s behavior creates. It is demoralizing to be judged by those closest to them.
- Don’t place blame for your grandchild’s condition on your child. If your child abused drugs or alcohol while pregnant, intervention may be needed if there is another pregnancy. In most cases blaming your adult child often escalates feelings of guilt.
- Don’t place blame for your grandchild’s condition on his or her teacher or other helping professionals. Blaming the messenger for informing parents of their child’s special needs is counter-productive.
- Don’t purchase U.S. Savings Bonds or fund a Uniform Transfers to Minor’s Account in your grandchild’s name. These assets may jeopardize your grandchild’s eligibility for needs-based government benefits for which s/he may qualify as a result of his or her disability. Even if your grandchild doesn’t qualify for needs based benefits, if his or her disability is a behavior or conduct disorder disability, s/he will have access to these funds when s/he turns 18 or 21. If your grandchild lacks maturity or is behaviorally challenged, these assets could be at risk.