ENCORE: Grandparent Challenges

(The following is a previously posted article that may be worth revisiting)

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 Books Written Specifically for Grandparents

There have been thousands of books written about autism. They include hundreds of books written by persons with autism, hundreds of books written for children, books on high functioning autism, picture books about autism, books for autism parents, books with autistic characters, books written from the perspective of a child with autism, and on and on. There are even websites that provide guidance on how to write books about autism.

But my aggressive search has found only seven books written for autism grandparents. I’ve now read all seven, and following are my brief comments. The seventh book is the best.

Autism & the Grandparent Connection, Practical Ways to Understand and Help Your Grandchild with Autism Spectrum Disorder, by Jennifer Krumins, Autism Aspirations, 2010, 235 pages

The author is knowledgeable, credentialed, and has first-person empathy, but the book reads like a long-day back-and-forth-between-topics discourse. Dip into the book anywhere and you’ll find good stuff, but you may also find information on the same topic 50 pages distant. The book has helpful charts and lists and personal stories and guidance, etc., but – and this is a nice way to say it – everything is abundantly flavored with the author’s heartfelt thoughts and feelings. The book is 8 ½ x 11 inches - the same size as standard paper. It looks like a manuscript fresh off the printer without benefit of a book designer, and thus is more cumbersome to read than if it were designed in a read-friendly manner. Also there are proofreading errors throughout.

Helping Grandparents Understand Autism, by Dr. Linda Barboa and Jan Luck, KIP Educational Materials, 2020, 23 pages

This slim book (with lots of white space) offers some very good basic tidbits about autism, all of which can be helpful for anyone who is just beginning to learn – but very little of which seems to be written specifically for grandparents. A full five pages are filled with a list of autism terms and acronyms and their meanings: “Auditory: The sense of hearing.” “Calming Skills: Persons with autism may need to be taught skills to calm themselves,” and so on.

REVOLUTIONARY GRANDPARENTS, GENERATIONS HEALING AUTISM WITH LOVE AND HOPE, collected by Helen Conroy and Lisa Joyce Goes, Skyhorse Publishing, 2016, 166 pages

The book’s Foreword states that vaccinations cause autism. The Introduction states that autism is a “disease” that can be cured. In the book’s first chapter the authors state their mistrust of the medical/science community. The book features “Nineteen Stories from Extraordinary Families.” The book is sincere and heartfelt but its challenge is in its dismissal of scientific research.

Your Special Grandchild, by Josie Santomauro, Jessica Kingsley Publishers, 2009, 48 pages

This little book is a poorly written hodgepodge of information, but it has its moments. For example, there is a good list of mannerisms that are common among persons with autism, some good information about the grief process that often follows an autism diagnosis, good comments from persons with autism, and a variety of good tips regarding autism.

GRANDPARENTS & Young Children with AUTISM, by Susan Louise Peterson, self-published, 2016, 35 pages

The value of this book is questionable. It briefly – very briefly - touches on some random aspects regarding autism, and does so with random organization. For example, the “section” on tantrums reads as follows (in total): “Tantrums: A tantrum can be a characteristic of autism as a grandchild resists a change of routine, but it can also be seen in a sick child. A grandchild who wants to go home may tantrum because he or she wants to rest or go to bed.”

What Does the Squirrel See? A Grandparent’s Guide to the Autistic Grandchild, by C.B. Brown, United Resource Books, 2018, 108 pages

My favorite thing about this book is the projects and activities that you can do with autistic children. They are sprinkled throughout and then there is a whole section at the end. The book contains lots of wonderful information – much of it directed specifically to grandparents - but it is not organized in a way that makes sense to me, and much of it, while appropriate for one child with autism, doesn’t adequately address the wide variety of autism. For example, the “Making New Friends” section begins with this: “When you go someplace with people he doesn’t know well, patiently reassure him. As you smile and say hello to a new friend or relative, encourage him to wave to the person.” The book also presents some checklists and lists of bullet points that, when taken as a whole are a bit much, but when carefully considered item by item can be instructive. Again, the very valuable part of this book is the projects and activities that it presents.

Grandparent’s Guide to Autism Spectrum Disorders, Making the Most of the Time at Nana’s House,by Nancy Mucklow, AAPC Publishing, 2012, 128 pages

This is the perfect book for autism grandparents. The author knows her stuff and she’s walked the walk. It can be helpful for all varieties of autism – which means that there are portions of the book that will be especially relevant and helpful to each specific autism grandparent. My advice is to read the book with a yellow highlighter handy to highlight the portions that apply to your situation. Following is a review that I published earlier:

I’ve read a bunch of books on autism, and a clear favorite has now emerged: the 128-page Grandparent’s Guide to Autism Spectrum Disorders by Nancy Mucklow. My thought is that everyone – autism families, autism friends, autism professionals, the general public – can benefit greatly from this easy-to-read, easy-to-apply-to-your-own-life guide.

I love the book’s upbeat, encouraging, hope-filled tone – a tone that permeates even the book’s attention to the most challenging and disheartening aspects of autism. And I love the book’s theme of practicality – the constant message that problems and challenges can’t always be solved right now: “Sometimes the right thing to do is to just let it go,” and “Some issues can wait for another day.”

Susan J. Moreno, CEO and founder, OASIS@MAAP says this: “This is a must-read for grandparents, their children, and all teachers, counselors and support staff who work with individuals on the autism spectrum. All levels of functioning and a cornucopia of circumstances are addressed.”

A challenge for any book on autism is how to organize it. Nancy Mucklow has organized this book in a wonderfully engaging and readable manner. There are nine chapters, but the book’s organizational brilliance is in its four categories of materials that are sprinkled throughout.

One category is short autism stories that illustrate certain areas. For example, the book’s first page tells how three-year-old Leisa’s grandparents reacted to Leisa’s diagnosis and began their interaction with her.

Another category is called “Quick Tips,” such as “Quick Tips for Dealing with a Meltdown.” I’ve found every Quick Tip in the book not only helpful, but also revealing of the author’s deep understanding and personal experience. (She’s an autism grandparent herself.)

A third category isn’t named, but I’ll call it “Boxed Information.” Sprinkled in appropriate places throughout the book are boxes containing special information with titles such as, “How to Respond to Friends who say ‘What’s Wrong with Him?’” or “What If You Don’t Agree With What the Parents Are Doing.” I love some of the guidance in this specific box, such as, “Remember that the parents are doing this for the first time too, so your support will be much appreciated,” and “Your job is to support their decisions and make the child’s life as calm and happy as possible.”

And the fourth category is one that I simply call “Charts.” For example, there is an annotated chart that lists all of the senses (taste, touch, vision, etc.) and lists the various ways that a child with ASD may either seek or avoid each sense. Another example is a chart that’s titled, “Common Communication Challenges In Children With ASD,” that lists and describes the causes and emanations of those challenges.

I’ve found a great way to enhance the book’s benefit to me. I’ve highlighted everything that relates to my situation. For example, Angelina doesn’t have depression or pessimism, so the part of the book that deals with that isn’t highlighted. But the book’s box entitled, “The Ten-Minute Tidy-Up,” is highlighted.

And finally, the book offers an analogy that can possibly be beneficial for everyone’s overall understanding of autism: autism is a cat living in a dog’s world. (At least for everyone who is familiar with the ways that dogs and cats see and relate to the world.)

I bought my copy on Amazon for $18.55.

Telling Our Grandchildren They Have Autism

When and how should children be told they have autism? And what roles can and should we grandparents play in telling them?

It will be helpful if you are able to watch this 5-minute video before you continue reading this article: https://www.youtube.com/watch?v=vhODPVkFJJE

Hopefully you’ve now watched the video, so now here are nine things that may be helpful to you and your family regarding telling your grandchild that she has autism.

1. Determine WHO is the best person to initiate and continue this conversation with your grandchild. It should be a person whom your grandchild feels comfortable with and trusts and respects. In some families this person might be a grandparent. Even if not, it is helpful for us grandparents to be knowledgeable about this topic.
   

2. Start the conversation as SOON as possible – hopefully very soon after the diagnosis. The content of the initial conversations will depend on your grandchild’s age and cognitive abilities. For example, if your grandchild has been diagnosed at two years old and isn’t yet verbal and isn’t likely to understand words and sentences, you can still begin. Just as you say things such as “I love you,” you can also say things like, “I love you, and one of the reasons you are so special to me is that you have autism, and that means that you see the world differently from typical children. I am so excited to watch you grow and to learn things from you.” Again, even though a two-year-old isn’t likely to comprehend any of this, if you say it on a continual basis and gradually expand over the weeks and months and years, it won’t be a sudden surprise to your grandchild as his cognitive abilities get stronger. Always talk about autism in an upbeat way, and regardless of the age of your grandchild, the conversation should be ongoing rather than a single, major, two-hour session.
   

3. Start these conversations with your grandchild only after you are COMFORTABLE with his autism diagnosis and have worked through your own fears and doubts and anxieties.
   

4. You don’t want your grandchild to FIND OUT BY ACCIDENT that she has autism: overhearing a teacher, being told by a playmate, seeing a television show about someone like her, etc. Your grandchild’s healthcare workers, therapists, teachers, playmates’ parents, and many others will need to know that she has autism – and it’s not helpful for that knowledge to be hidden from her. If she starts asking questions such as, “Why do people say I’m weird?” or “Is there something wrong with me?” or “What is autism?” then you’re overdue in telling her that she has autism. But it’s great that you can now begin!
   

5. Initiate the autism conversation and have ongoing conversations only when your grandchild is calm and in a good mental and emotional state – not, for example, after a meltdown.
   

6. A good way to start is by discussing the fact that some persons are the SAME IN SOME WAYS AND DIFFERENT IN OTHER WAYS. For example, Grandmother wears glasses but Grandfather doesn’t. But Grandmother and Grandfather both like pancakes. Then, for example, “You and [playmate] are the same because you both like Peppa Pig. But you and [playmate] are different because purple is your favorite color and yellow is her favorite color.” Then let her know that all people are the same in some ways: everyone has times whey they are happy and also times when they are sad, etc. Then move on to the fact that everyone is good at some things but struggle with other things. Then, for example, “You are very good at dancing, but you sometimes need help going down a flight of stairs.”
   

7. Then proceed to talk about your grandchild’s STRENGTHS AND CHALLENGES. Be specific and emphasize the strengths: “You are so good at smiling at people. It makes people feel good when you smile at them.” Be less emphatic about challenges: “Have you noticed that you sometimes try to run away from us?” Let your grandchild know that you will help with challenges: “Running away can be dangerous, but I will always be here to help you with this. Everyone has challenges and things that they are not good at, and it is wonderful when there are people who can help.”
   

8. When OLDER CHILDREN first learn that they have autism, it is often a relief. They now know why they feel different, why they are treated differently, and why they may have difficulty making friends. Learning that they have autism can help eliminate their feelings of failure, of inadequacy and guilt, and of low self-esteem. And it can eliminate their wrong ideas such as having a terminal disease or being from another planet. The knowledge allows them to become more self-aware and able to understand their identity.
   

9. Let your grandchild know that every person with autism is different from all the others, and that the autism community is big. You may be able to name other persons whom she knows or knows of who have autism.

BOTTOM LINE – The sooner and calmer and more upbeat you can start talking to your grandchild about her having autism, the better. Sometimes grandparents – because parents often have more hectic and time-consuming challenges - are the ideal persons to lead these conversations, but even if not, grandparents can be empowered by their grandchildren’s parents to participate in meaningful ways.

P.S. – As we all know, every person with autism is different. You and your grandchild’s family are the persons who know her best and who can determine how best to have these conversations.

P.P.S. – A helpful project for many children is creating an ongoing artwork/poster entitled “All About Me.” There may be a photo or drawing of your grandchild surrounded by appropriate words and images.

And finally, I recommend watching the first ten minutes of this video: https://www.youtube.com/watch?v=x9heXsxLSHU&t=9s