Today's video blog is all about grandparenting and some of the challenges and unique role
of being a grandparent of a child with autism.
Hi, I'm Dr. Mary Barbera, autism mom board certified behavior analyst and bestselling
author of the verbal behavior approach.
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 should do that now.
Today we are talking about grandparenting a child with autism.
And I recently interviewed a grandma, I call her gung ho, Grandma Diane, who, uh, whose
grandson Jude was diagnosed with autism in June of 2019.
But prior to that, in February of 2019 she had a friend recommended my toddler online
course and community.
So Diane, uh, quickly fell into my world way before the diagnosis and some of the changes
that she’s seen in Jude, he, he had zero words.
Now he's talking, he's actually talking in sentences using contractions using no, you
know, just a bunch of great progress.
He's imitating, he's matching, 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
that's the podcast episode.
But this video blog I wanted to share some of the statistics that I found about grandparents
from a great free guide that I downloaded from autism speaks called The Grandparents'
Guide to Autism and it is by autism speaks.
You'll have to go on their website to download your free copy, but it is free.
In about 30% of the time, grandparents were the first to notice that there was a problem
in their grandchild's development.
And 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.
Um, so but my husband was the first one to notice it.
I just got into a big state of denial.
Also in this guide 90% felt that the experience, so facing their child, grandchild 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, uh, for Lucas and for my family.
And um, 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 some role in making treatment decisions for their grandchild.
More than 7% said they'd actually combined households to help and 34% said they take
care of their grandchild at least once a week.
There are, uh, as part of this 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.
I think if, um, you are a grandparent and in any way you want to learn some more information,
I'm just giving you some highlights from this grandparent guide.
Some ways that you can support your child and your grandchild, um, ask if you can babysit
your grandchild for a few hours over night so that your adult child can get a break.
Um, 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.
She took it.
We have several grandparents right within our, our courses.
Um, actually all of them I believe are grandmothers versus grandfathers, but um, they're a big
part of our community and um, in many situations like Diane who I interviewed for the podcast,
she's retired, she, um, 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, is just so key.
You want to, if possible, be active in your grandchild's treatment and development.
Um, you are in a unique position to help, uh, fight the social stigmas, um, disclosing
that you have a family member with autism.
And also you might be in a position where you're on boards of hospitals or something
or you can do public advocacy and meet with legislators, um, to, to try to get autism
awareness, acceptance, treatment, funding, research to the next level.
So, um, this guide also says that, uh, grandparents have common reactions to grief, uh, grief
when their grandchild is diagnosed.
They can be in denial.
Uh, like I was saying, things like this cannot be happening to my family.
Fear, what will happen to my grandchild when I can no longer help.
Anger, this comes from my daughter's side, spouse's side of the family, you know, blaming
on something.
Um, there's no way to tell where this came from.
So in terms of these are some of the stages of grief, um, guilt, did I do something, um,
to, to cause this confusion.
Being overwhelmed by all the information is, it's just so common for both parents and grandparents.
Powerlessness and disappointment, worrying about whether you're going to have to be able
to have a somewhat normal relationship with your grandchild.
So I'm sure there's other reactions too.
I know as Lucas got older and bigger and he had a period of time when he had some severe
problem behaviors like aggression, you know, my parents were worried that they would get
injured.
And so we want to acknowledge the role of grandparents, the grief response of grandparents,
the um, what they can do to support the family and the grandchildren.
So again, I would recommend going to autism speaks, uh, downloading, googling The Grandparents'
Guide to Autism.
Check out that podcast with grandma Diane at, uh, episode number 37.
And if you liked this video and you know other grandparents who might benefit, I hope you
will share this video.
Give me a thumbs up, leave me a comment.
And 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.