Grandparenting a Child with Autism: How to Be a Supportive Grandparent

Today’s video blog is all about grandparenting and some of the challenges and the unique role of being a grandparent of a child with autism.

Each week I provide you with some of my ideas about turning autism around, so if you haven’t subscribed to my YouTube channel, you can do that now and join the 20,000+ others who already have.

Today we are talking about grandparenting a child with autism. I recently interviewed a grandma, I call her gung ho, Grandma Diane, whose grandson Jude was diagnosed with autism in June of 2019. Prior to that, in February of 2019, she had a friend recommend my toddler online course and community. So Diane quickly fell into my world way before the diagnosis and some of the changes that she’s seen in Jude are amazing.  He had zero words and now he’s talking in sentences, using contractions, using no, just a bunch of great progress. He’s imitating, he’s matching, and he’s following directions. He is not eloping and just all kinds of wonderful things that Diane talked to us about on the podcast. So if you want to listen to that full podcast with Grandma Diane, you can go to marybarbera.com/37.

But for this video blog I wanted to share some of the statistics that I found about grandparenting from a great free guide that I downloaded from Autism Speaks called the Grandparents’ Guide to Autism.  You’ll have to go on their website to download your free copy.

  • About 30% of the time, grandparents were the first to notice that there was a problem in their grandchild’s development. I know that my mother-in-law mentioned to my husband pretty early on, before Lucas’s diagnosis, that she thought his development was off track. I was just in a big state of denial.
  • Also in this guide, 90% felt that the experience of facing their grandchild’s situation together had brought them and their adult child closer. I know with my parents, they’re both in their eighties now, and they have both been tremendously supportive for Lucas and for my family. They’ve been a big part of my life and I would say that our involvement with autism has probably brought us closer as well.
  • 72% of grandparents said they have some role in making treatment decisions for their grandchild.
  • More than 7% said they’d actually combined households to help.
  • 34% said they take care of their grandchild at least once a week.
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As part of this grandparenting guide, there are some suggestions too if you are not living near your grandchild with autism. So you definitely want to check out that guide if you are a grandparent and you want to learn some more information. I’m just giving you some highlights from this grandparenting guide. Some ways that you can support your child and your grandchild are:

  • To ask if you can babysit your grandchild for a few hours overnight so that your adult child can get a break.
  • If you live at a distance and are not comfortable babysitting your grandchild, you may want to offer to pay for some respite or pay for a babysitter.
  • You want to educate yourself and your extended family about autism. Diane found my online course to educate herself. We have several grandparents right within our courses. Actually all of them I believe are grandmothers versus grandfathers, but they’re a big part of our community and in many situations like Diane who I interviewed for the podcast, she’s retired, she was and still is an avid reader and she was able to really get ahead of what she needed to do to help her grandson. So education is just so key.
  • You want to, if possible, be active in your grandchild’s treatment and development. You are in a unique position to help fight the social stigmas by disclosing that you have a family member with autism. Also, you might be in a position where you’re on boards of hospitals or you can do public advocacy and meet with legislators to try to get autism awareness, acceptance, treatment, funding, or research to the next level.

This guide also says that grandparents have common reactions to grief when their grandchild is diagnosed. They can be in denial and thinking things like this cannot be happening to my family. Some might fear what will happen to their grandchild when they can no longer help. Some might be angry, saying things like this comes from my daughter’s spouse’s side of the family and blaming something or someone, however, there’s no actual way to tell where autism comes from. Some of the stages of grief are guilt like did I do something to cause this confusion? Being overwhelmed by all the information is just so common for both parents and grandparents. Some might feel powerlessness and disappointment, worrying about whether you’re going to be able to have a somewhat normal relationship with your grandchild. I’m sure there are other reactions too.

I know as Lucas got older and bigger, he had a period of time when he had some severe problem behaviors like aggression and my parents were worried that they would get injured. We want to acknowledge the role of grandparents, the grief response of grandparents, and what they can do to support the family and the grandchildren. So again, I would recommend going to Autism Speaks and downloading The Grandparents’ Guide to Autism.

If you liked this video/article and you know other grandparents who might benefit, I hope you will share this it, give me a thumbs up, or leave me a comment. If you would like more information about potentially joining my online courses and community, go to marybarbera.com/workshop. And I hope to see you right here next week.

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