Autism Speaks has prepared a document, available free on their website (www.autismspeaks.org), entitled, “100 Day Kit for Families of Young Children Newly Diagnosed with Autism.” It’s a 21-page document for guidance immediately after diagnosis, “to help you make the best possible use of the next 100 days in the life of your child.”
I don’t recommend the kit as a first-100-day guide. It is great at providing a lot of good information but is short on recommending an actual day-to-day to-do list. Plus, it offers far more than can be accomplished in 100 days. And the document is especially lacking in that it has no recommendations regarding talking with or involving grandparents.
Following is my suggestion for a “First-100-Days-After-Diagnosis List for Grandparents.”
This is a list specifically for grandparents. The 8 items are listed in priority order – and, if schedule allows, in the order they might be accomplished. And it is reasonable to expect that all can be accomplished in 100 days.
ONE – Resolve your issues regarding denial and blame. Denying an accurate diagnosis will be counterproductive for your grandchild because denial will result in delayed therapies. Accepting an autism diagnosis that may later prove to be wrong won’t do any harm at all. Even if therapies begin, they will be equally helpful to a child who is later found not to have autism. It’s useless to assign blame for autism, because nobody yet knows what causes autism. The one thing that is known is that genetics very likely play a role.
TWO – Have a talk with your grandchild’s parents about the following three things.
Lifetime Responsibility of Time and Energy – Discuss with the parents how much you can participate regarding your time and energies.
Lifetime Financial Responsibility – Discuss with the parents how much you can participate regarding money.
Lifetime Social Needs – Discuss with the parents how much you’re willing to participate trying to gather friends and persons who will love your grandchild through activities with others (faith organizations, sports teams, support groups, etc.).
THREE – Offer ways that you are willing to help beginning NOW – such as providing money for specific needs, providing caregiving as per your specific availabilities, doing online research (finding therapy providers, learning “solutions” for specific symptoms such as meltdowns, investigating schools, etc.)
FOUR – Start telling friends. Our friends regularly ask us grandparents about our grandchildren. Immediately after the diagnosis is the time to begin saying, “She has recently been diagnosed on the autism spectrum, and we are so grateful for the diagnosis. That explains some of her challenges and we can now start engaging appropriate therapies to help.”
FIVE – Join your local nonprofit autism organization (if there is one) and plan to get involved by volunteering for something. You’ll meet good folks and learn good things!
SIX – Join the following autism grandparents support group on Facebook: Grandparents of Children on the Autism Spectrum. It’s well run, informative, and has Zoom meetings that are helpful and supportive.
SEVEN – Order and read Nancy Mucklow’s book, Grandparent’s Guide to Autism Spectrum Disorders.
EIGHT – Familiarize yourself with the website of Autism Speaks: www.autismspeaks.org. It’s the BIG national autism organization and the website has information on just about everything.
The longer we grandparents wait on accomplishing this list, the more difficult it can be. Our involvement can provide significant benefits for our grandchildren – the sooner the better!