Grandparent Challenges

What are your challenges as an autism grandparent? You of course have many in a wide variety of categories. Have you listed your challenges? Have you prioritized them? Do you know which ones are the most urgent? Which are the most important?

I wonder if my challenges as an autism grandparent are similar to those of other autism grandparents. I’ve been an autism grandparent for only three years as of this writing, and it will be interesting to see how my list changes during the coming years.

Here are five of my challenges:

1. A support group of other autism grandparents. Right now my list of autism grandparents who are my friends and live in my city is tiny. I need it to grow so I can have in-person commiseration and camaraderie.

2. Knowledge about autism. There is a ton of information on the Internet, but my challenge is knowing what’s good, what’s current, and what is best for me. I wonder if I can develop a system for sorting this out?

3. How to help my granddaughter’s progress. Should I select just one thing at a time – like teaching her to dress herself – and work on that one every time I’m with her? Or should I be open to a wide variety of things and work on them as opportunities arise?

4. Relating to my daughter. My daughter is a single mom, so there is just one parent of my autistic granddaughter. We have a great relationship, but this is something that I know I need to proactively work on. I assume that all grandparents believe that they know what’s best for their grandchildren, and I assume that all parents resent THEIR parents giving them advice on how to raise their children correctly. I’m gradually making a list of the best ways for me to continue to have a best-case relationship with my daughter.

5. Planning for my granddaughter’s long-term future. For folks on the autism spectrum, odds are that they will need financial and other types of support throughout their lives. What’s my role in this? And how do I make it happen?

What are YOUR challenges?

Autism Speaks

Would you like to reach an Autism Response Team that can connect you with resources to meet your needs? Do you want some basic autism knowledge such as how many boys (1/37) and how many girls (1/151) have autism? Or what percent of persons with autism remain nonverbal (33%)? If so, you’ll want to become familiar with Autism Speaks (autismspeaks.org) which is of course the nation’s most recognized organization in advancing advocacy, research, education, and services for autism. The organization has published “A Grandparent’s Guide to Autism” that can be downloaded at no charge. The publication’s sections include, “About Autism,” “Reactions to the Diagnosis,” “Your Role as a Grandparent,” “Support for Your Grandchild,” “Support for Your Child,” “Taking Care of Yourself,” “Tips for Long Distance Grandparenting,” and “A Letter to Grandparents of Children with Autism.”

This publication is not only helpful, but it also stimulates questions, comments, and avenues for conversation – all of which can be discussed within the Autism Grandparents Club. For example, the Grandparent’s Guide provides results of a survey of 2,600 autism grandparents – results such as “90% of grandparents feel that the experience of facing their grandchild’s situation together had brought them and their adult child closer.” The Guide offers long-distance grandparent tips such as: “Send a disposable camera and ask your grandchild to take pictures of herself, her family, friends . . .” Then when they mail the camera back the grandparent may want to make a little photo album to discuss when they next see each other. The Guide closes with a wonderful letter from an autism parent to autism grandparents that includes a whole list of thank-yous such as: “Thank you for keeping them overnight so we could sleep in; the respite was much needed.” Again, become engaged with Autism Speaks - autismspeaks.org – and read the Grandparent’s Guide.