What can I do to ensure he is protected today, tomorrow and beyond my life?
Today you can love him and reach out to his parents to let them know they have your full support. One in 88 children born in the US or 1 in 54 boys has an autism spectrum disorder or ASD. i These children have special needs, but also have a wide range of abilities. At first and along the way these needs can be quite overwhelming. ii Dramatic improvement can come with early intensive behavior intervention. Therapy and intervention later in life can further decrease symptoms.
I remember shortly after our second grandson was born, his older brother was diagnosed at age four. Our daughter immediately announced they were moving back to South Carolina because they needed help – more hands, understanding hearts, and sincere emotional support. Unaccepted at preschool and then kindergarten our daughter and son-in-law started to home school their son. Loud noises and crying babies would set off the holding of ears and a tantrum, so they avoided public places and tried to always have someone ready to hold the baby. Eventually our grandson was able to attend public school with an adult shadow, but his parents were called almost daily over some behavior incident, many that required sensitive discipline and special in school training. But I want you to know our grandson has a unique perspective on the world and we have laughed far more than we wanted to cry. One year I gave my grandson a John Deere video. Like many high functioning ASD children he obsessed over objects, but quickly learned and had an amazing recall of minute details. One day he wandered away from his mother when she was at Lowes. Knowing of his inability to interact with strangers, she was relieved to find him caressing a green riding lawn mower and reciting the model numbers and details of the antique tractors he had memorized from the video as several elderly gentlemen nodded approvingly nearby. After some moments he signed, placed his head lovingly on the hood and said, “a John Deere.” You will still have treasured moments and successes to celebrate.
Today our grandson is doing well in school and is even able to ride the school bus, sing in his church choir, perform small roles in plays and run distance races with his dad. Along the way we’ve helped with care, transportation, backup, being a sounding board and sometimes money. Like most grandparents of ASD children, our family is undoubtedly closer and more caring because this grandson required all our efforts and so deeply touched our hearts.
While all parents should designate guardians for their children in a will, this is especially important for parents of special needs children. A gift card for legal services may be unusual, but a sensitive and wise birthday present for your child. Additionally, parents need to create a written plan to pass on key information to an alternate caregiver in the event of the parent’s disability, incapacity or untimely death.
Most ASD children would benefit greatly by a grandparent creating a special needs trust to ensure the child’s future. A trust can be created now and funded with an annual gift tax exclusion, currently up to $14,000 per year could be gifted with no tax implications. If your income and assets are more modest, a special needs trust can be created in a will and funded with life insurance. Leaving monies in a will without a trust could jeopardize the ASD child’s public benefits and some adults with special needs are not able to manage funds or would be easy prey to the dishonest. The old idea of just leaving the special needs child’s share outright to a sibling is fraught with problems because siblings can get divorced, get sued, misuse the funds, become incompetent, or simply fail to carry out their responsibilities. A well-meaning relative can sabotage a well-crafted legal plan so be sure to let your family know of your trust so they can coordinate donations or bequeaths into the trust.
Take a deep breath and know your life will be different because of this grandson. Both your life and his will be meaningful and rich as you embrace his unique journey. And thank you for reminding me to tell my readers about WADD, World Autism Disorder Day on April 2 nd. There are wonderful resources online and support groups to help your family.
Disclaimer: Information contained in this column is meant to be of general information on frequently asked questions concerning disability, elder law, estate planning and probate law, and does not contain specific legal advice to a client. No attorney-client relationship is created by reading this column.
i Autism Speaks website 3/13/2013.
ii Id. Go online to access the free 100 day Autism Kit or the Asperger Syndrome and High Functioning Autism Kit or call 1-888- AUTISM2 (888-288-4762) to have a hard copy shipped for pick up to a local FedEx.