A Bountiful Website: Grandparent Autism Network

We autism grandparents can benefit greatly from the website of the Grandparent Autism Network (www.ganinfo.org) that is headquartered in Orange County, California. The organization’s in-person events take place locally, but its website information serves a global community.

“The Grandparent Autism Network informs grandparents about autism and the medical, educational, legal and social issues that affect their families, enabling them to share how they may improve the quality of life for their children and grandchildren.”

Founded in 2006 by Executive Director Bonnie Gillman a few years after her grandson was diagnosed with ASD, the Grandparent Autism Network provides a robust website that’s worthy of attention from autism grandparents.

New information and expertise is posted on a regular basis. For example, the following is one of today’s (10/17/2020) prominent articles:

Increasing Support For Your Children - and Grandchildren

“During this pandemic, our families are experiencing more stress than ever before. Tasks for caregivers have increased as professional autism support for families has decreased. Here are some ways you can help them now - and always: . . .”

And this article provides a list of things we grandparents can do to be supportive during COVID, such as, “Compliment everything your grandchildren's parents are doing to meet their increased responsibilities - and ask what you can do to help them.” And the article also suggests contents for a care package that we can send to our grandchildren if we can’t see them in person.

The website also provides instructions regarding how we grandparents can create a “Care Notebook” for our grandchildren’s parents:

“Families that have special needs children are typically overwhelmed with school, medical and therapy reports that need to be easily accessible when requested for Independent Education Planning sessions, progress evaluations and for filing insurance claims. Giving your family a Care Notebook, may be the best gift they will receive for years to come. It helps them to organize the huge amount of paperwork they have and relieves a lot of stress. It is easy to find the components at any office supply store and should cost approximately $25. Here’s how you can make one: . . .”

One of my favorite parts of the website is called “Tips and Suggestions” that can be found by clicking on RESOURCES and scrolling down. There are dozens of entries, such as, “Software for Speech Impaired People,” “Respite Care Options,” “30 Things Parents of Children on the Autism Spectrum Want You to Know,” and “Go Take a Hike With Your Special Needs Grandchild.”

And finally, GAN’s seasonal Newsletter always contains beneficial information. For example the most recent Summer Newsletter contains these topics, “Safe Outdoor Activities,” “Best Movies About Autism,” [The list includes my personal favorite: “The Boy Who Could Fly.], and “Best TV Shows About Autism.”

The Grandparent Autism Network is an important and highly beneficial organization, and we’re missing out if we aren’t regular visitors to the website.

Know Different

I recommend that autism grandparents visit and explore the website, www.knowdifferent.net.

KnowDifferent.net is a site for all special need families that have to do anything ‘KNOWdifferently.’ No matter what the diagnosis, our site will offer you a place to learn, a place to share and a place to feel KnowDifferent.

Virginian Carissa Garabedian, mother of a 17-year-old son with autism, originated and maintains this wonderful website that not only provides ongoing insights regarding her family’s challenges (such as the COVID-resulting virtual learning for her son), but also presents helpful articles and opportunities from other sources, such as virtual conferences on autism, all of which can help us autism grandparents be more knowledgeable and ever better equipped to provide support and understanding for our grandchildren and their families.

This website also has a link to MacaroniKid of Richmond – a local-info-added national website that provides activity guides and helpful information for families with children. For us grandparents who will have involvements with our grandchildren during Halloween season, there is a great article by Jennifer Hill, “10 Ideas for Halloween Fun in COVID Times!” One of the ideas is something I’ll do with my 4-year-old granddaughter: a Halloween candy hunt (like with Easter eggs). Another idea that we grandparents can initiate is a virtual (such as with ZOOM) Halloween costume contest or party.

One of the website’s current featured articles is entitled, “15 Simple Life Hacks We All Should Know,” and it provides a great tip that I will use for my granddaughter’s love of cheese toast: “Turn your toaster on its side and melt a piece of cheese on your toast!” We autism grandparents who do some of the caretaking for our grandchildren need all the “life hacks” we can get.

Perhaps the best thing about KnowDifferent is Carissa Garabedian’s ongoing series of “Dear KNOWDifferent Families” letters. Ms. Garabedian candidly shares her personal joys and challenges associated with caring for her special needs son – joys and challenges that we grandparents experience too. It helps us to read the words of someone else who is experiencing some of what our own family is experiencing. Here is one passage from the October 2020 letter: “We are in week 4 of virtual school at our home and it has been HARD! It is mentally exhausting to be on the computer and to be so disconnected. I am talking about what it is like for me. I can only imagine how difficult it is for my son. I can see his struggles, I can feel his anxiety and I cannot do anything about it except continue to support him. I know the teachers are also struggling, it is not easy for anyone. Many have asked me what my days are like and I thought I would share a little with you all, it may confirm that for those of us doing this - we are not alone.” This is followed by a chronicle of her daily schedule: beginning with waking up at 6am and ending with going to bed by 9pm, “to get ready to do it all over.”

This website is helpful to me and my wife as we participate a lot in the caretaking for our granddaughter, and I suspect that many other autism grandparents can also benefit from it.

What to Say and What Not to Say – a Guide for Autism Grandparents

There are all sorts of things that you should NOT say to autistic persons and to autism families. And there are also things that are wonderful to say.

We autism grandparents can be helpful to our families by not only saying the right things and not saying the wrong things, but also by knowing about this and helping to inform our family and friends.

Following is list of sixteen fundamental things – in no particular order – to say and not to say:

1. Don’t ask about or mention vaccinations. Although debunked over and over again by numerous scientific studies, many persons hold the firm belief that vaccinations cause autism. This is a very contentious issue on both sides.
   

2. Don’t mention Temple Grandin or Rain Man or Sheldon Cooper. Almost everyone who is involved with autism knows who these folks are and they resent those three stereotypes being heralded as any sort of norm for the autism spectrum.

3. Don’t question the diagnosis: “Perhaps it was a misdiagnosis,” “He seems so normal; I bet next time he won’t receive that diagnosis,” “Are you sure he really has autism?” etc. The diagnosis is personal and is something that the family is already dealing with in their own way in consultation with specialists.

4. Don’t ask the parents “How is [child with autism]?” without also asking about the other siblings. DO ask about all siblings at the same time.

5. Don’t offer autism expertise: “I’ve heard that . . .” DO, if you want, offer this: “If you need any research done on resources or anything, I’d be glad to help. And I’m really interested in learning more.”

6. Don’t mention the family’s genetics: “Did either side of the family have autism in it?” This implies blame.

7. Don’t say, “I think I’m a little autistic at times,” or “I have sensory issues too,” or “I also feel like I don’t fit in.” This confirms your ignorance of autism and also confirms your insensitivity to the autism family.

8. Don’t ask whether the person with autism takes medication. This implies that you think there are negative things for which he should take medication.

9. When you learn that someone has autism, DO say things like, “Well that explains a lot about [person with autism and/or that person’s actions]. Thanks so much for sharing this with me.”

10. It’s fine to say, “Tell me about autism,” rather than pretending to know.
    

11. DO say things like, “Would you like to come play with us?” or “Let’s schedule a time for us to get together.” or “Come join us!”

12. Don’t say, “He’s not at all like [another person you know with autism].”

13. Don’t say things like, “I don’t know how you do it,” or “Life doesn’t give us anything we can’t handle.” The person/family likely already feels the load without you confirming it. They would rather hear things like, “Pick a day next week for me to babysit.”

14. Don’t say things like, “I wish he/you would calm down,” “I wish he/you would just look me in the eyes,” “I wish he/you would stop that [repetitive motion]” etc. Persons with autism are compelled to display a variety of behaviors that are not “normal” and that often bother or concern other persons. But often such behaviors have a beneficial function for the person with autism.
    

15. Don’t say, “He/you must have high-functioning autism.” The term “high-functioning” is a label and is dismissive of the fact that everyone is different.

16. Do say, “He’s lucky to have you as a parent!”

We grandparents can incorporate this knowledge with not only what we say ourselves, but as we educate our family and friends. They will greatly appreciate and benefit from this guidance from us.