125 Grandparents: How You Can Help

Be Supportive:

You are in a unique role to both support your son or daughter (as well as your grandchildren). It is important that they know you support them as the experts with their child. You can show your support in many ways, such as helping to inform and guide their decisions, and letting them know they are not alone in this process. Your children may also need a lot of support with their children. Offer to spend time with all your grandchildren, but also allow individual time with each child; that will allow your children to spend individualized time with your grandchildren. Remember to be flexible as day to day plans may change at the last minute and last-minute support may be needed.

Create a loving, caring and safe environment for your family:

Allow your home to be a place where everyone is comfortable. There can be a lot of stress as families are working through their new lives and everyone will need a retreat. Think about your grandchildren and their needs as you imagine them coming to see you. What items need to be put away or out of reach? Is there anything that could possibly hurt them? What are things that they enjoy that should be out and available for them? Are there special places that they can call their own or special activities that only happen at grandma and grandpas?

Be honest with your feelings:

Allow yourself to go through the grieving process. This is a normal process and will be at a different sequence and pace for everyone. If comfortable, identify people with whom you can share various feelings, concerns, and questions.

Educate yourself:

Learn about the disability that is affecting your family. This can be at a pace helpful to you; it does not need to be all at once. Your children (i.e., the parents of your grandchildren) will welcome your wanting to learn more. They may have written or other information that they can share or know where to direct you to get it. Ask if you would be welcome at a doctor or specialist visit so that you can also have opportunity to ask questions. There are many internet and other resources, but these must be chosen carefully. You can start with those contained here.

Respect the routines and boundaries that are set by the parents:

Individuals with ASD have a tough time with unexpected change, so providing a sense of predictability and routine is very important. Consistency among caregivers can also be important, so maintaining bedtimes, eating schedules, similar foods, strategies, etc. that are set by the parents are important even when they are in your care or at your home.

Be understanding of possible sensory issues:

Some individuals with ASD may have sensory issues that may lead them to be overstimulated by some sensations and under-stimulated by others. These sensory issues can greatly impact their food preferences, play preferences, social responsivity, and so on. As such, it is important to learn the individual needs and challenges of your grandchild and not to take their behaviors or choices personally (e.g., if they do not like touch, eating your food, playing with new toys/activities you select for them).

Expect gains and enjoy the individuality of your grandchild:

Keep your expectations high for all your grandchildren. Support and challenge all of them in reaching their individualized potentials. With understanding, support, and love, you will be a key part in raising them.

Resources

Gray, D. (2002) Ten years on: A longitudinal study of families with autism. Journal of Intellectual and Developmental Disability, 27: 215-222

Hastings, R. (1997) Grandparents of children with disabilities: A Review. International Journal of Disability, Development and Education, 44: 329-340

Heller, T., & Hsieh, K., Rowitz, L. (2000). Grandparents as supports to mothers of persons with intellectual disability. Journal of Gerontological Social Work, Vol. 33(4) 2000

Hillman, J. (2007). Grandparents of children with autism: A review with recommendations for education, practice, and policy. Educational Gerontology, volume 33. 513-527.

Margetts, J. K., Le Couteur, A., & Croom, S. (2007). Families in a state of flux: the experience of grandparents in autism spectrum disorder. Child: Care, Health & Development, volume 32 (5), p565-574.

Trute, B., Worthington, C., & Hiebert-Murphy, D. (2008). Grandmother support for parents of children with disabilities: Gender differences in parenting stress. Families, Systems & Health, volume 26 (2), pages 145-146

Anyanwu, J. I., Onuigbo, L. N., Obiyo, N. O., Eze, U. N., Akaneme, I. N., Aye, E. N., … Adimora, E. D. (2019). Parenting Stress in Families of Children With Autism Spectrum Disorder: The Roles of the Extended Family. Global Journal of Health Science, 11(8), 51. https://doi.org/10.5539/gjhs.v11n8p51

Hillman, J. L., & Anderson, C. M. (2019). It’s a Battle and a Blessing: The Experience and Needs of Custodial Grandparents of Children with Autism Spectrum Disorder. Journal of Autism and Developmental Disorders, 49(1), 260–269. https://doi.org/10.1007/s10803-018-3761-0

Hillman, J. L., Wentzel, M. C., & Anderson, C. M. (2017). Grandparents’ Experience of Autism Spectrum Disorder: Identifying Primary Themes and Needs. Journal of Autism and Developmental Disorders, 47(10), 2957–2968. https://doi.org/10.1007/s10803-017-3211-4

Prendeville, P., & Kinsella, W. (2019). The Role of Grandparents in Supporting Families of Children with Autism Spectrum Disorders: A Family Systems Approach. Journal of Autism and Developmental Disorders, 49(2), 738–749. https://doi.org/10.1007/s10803-018-3753-0