Our Grandchildren in Public Places

Taking our grandchildren with autism to public places – grocery stores, restaurants, playgrounds, medical offices, etc. – can offer unpredictable challenges, especially since we usually don’t have nearly as much experience as autism parents do.

Public places are different from our grandchildren’s familiar comfort zones, and they can present a smorgasbord of sensory information that can produce significant stress. This can result in difficult and even dangerous behaviors. The general public usually doesn’t realize that “effective parenting techniques” often don’t apply to autism, and thus we and our grandchildren can be the focus of judgment from strangers.

One of my granddaughter’s regular outings is for healthcare appointments. She does great now, but there used to be significant problems. She usually screamed, always had to be forcibly held to be weighed and measured, fought blood pressure and temperature gauges, and on and on. And everything about dental appointments was just awful.

But the good thing about healthcare appointments is that folks have empathy and understanding - but that’s usually not the case with other public settings. So how can we prepare and what can we do?

Autism Speaks offers guidance that may be helpful: https://www.autismspeaks.org/expert-opinion/parents-child-autism-seek-help-public-meltdowns

Here are some of the suggestions:

Role Play – At home go through the motions of what the forthcoming public outing might be: entering the grocery store, getting the cart, selecting items for purchase, checking out, etc.

Start Small – The initial grocery outing might include simply parking and walking across the parking lot and entering – then immediately leaving and going home.

Involve – For example, get your grandchild to put the items in the cart.

Distract – Have a favorite toy ready if needed.

Teach Coping Strategies – Close eyes and count to 10, etc.

Reward – A favorite candy or use of the iPad.

Of course every autistic person is different and what works for some doesn’t work for others.

What about significant negative behaviors such as a full-blown meltdown? How can we prepare? What can we do? Following are some things to consider:

1. Teach and practice some basic things such as walking together and standing in line.

2. Scout out the location in advance – and/or call and ask questions.

3. If a bad situation does happen, stop everything and make your grandchild’s safety your priority. And stay calm.

4. Ask bystanders to help: “My grandson has autism; it will help if you can give us some space.” Or, “Can you please remove [dangerous object] from this area?” Or, “Please get the manager.” Or, “Please call 911.”

5. Some autism grandparents carry explanatory cards to give to nearby strangers: “My grandchild has autism. She is not misbehaving.” There are some excellent examples of cards on this site: https://www.pinterest.com/pin/468585536200210348/

6. Bad public outings will happen. But they don’t mean that we should quit trying.

An additional website that is helpful regarding public outings is: https://www.childrens-specialized.org/Content/Uploads/Childrens%20Specialized/KohlsAutism/Autism/Tip%20Sheets/Real-Life-Tips-for-Kids-with-Autism-Challenging-Behaviors-Public-Places.pdf

And this website has links to additional 9 additional sites that provide helpful information regarding managing challenging behaviors including meltdowns.

If you’re like me, you’re anxious regarding public outings with your grandchild. Will she “behave”? Will she do inappropriate things that involve other persons? What “rewards” should I have handy? And if you are like me, it’s so much easier to just stay at home and forego any public outings – but you realize that public outings are helpful to your grandchild’s continued progress in being able to relate to “normal” society.

Meals With Our Grandchildren

Stephen Mark Shore is a 58-year-old autistic professor at Adelphi University. He says this about how he processed food as a child:

“Brown or black food wouldn’t be eaten, as I insisted that they were poisonous. Canned asparagus was intolerable due to its slimy texture, and I didn’t eat tomatoes for a year after a cherry tomato had burst in my mouth while I was eating it. The sensory stimulation of having that small piece of fruit explode in my mouth was too much to bear and I was not going to take any chances of that happening again. Carrots in a green salad and celery in tuna fish salad are still intolerable to me because the contrast in texture between carrots or celery and salad or tuna fish is too great. However, I enjoy eating celery and baby carrots by themselves. Often as a child, and less now, I would eat things serially, finishing one item on the plate before going on to the next.” [From his book: Beyond the wall : personal experiences with autism and Asperger syndrome]

We autism grandparents frequently have occasion to eat with, and/or serve meals to, our grandchildren. And we often have trouble understanding why they won’t eat this, won’t try that, and won’t even taste the other. Even when we demonstrate how much WE like it. Even when we do time-proven tricks like flying the airplane into the hangar. And even when we offer rewards.

My granddaughter, now 4 and now mostly free of eating difficulties, had serious eating disorders (and a feeding tube) for a long time. It was a major accomplishment to get her to open her mouth for a tiny spoonful of food. We didn’t understand, we didn’t have solutions, we consulted specialists, and we tried all sorts of things. I have no idea whether it was any one thing or any certain therapy that “cured” her, but my guess is that in her case it was mostly a combination of persistence and time.

I can remember thinking, “When she gets hungry enough she’ll eat!” But I am now finally aware that eating disorders are common among persons with autism. And the term “eating disorder” can refer to many different things ranging from simple aversions to, and preferences for, certain foods, to extremely harmful things like anorexia nervosa, pica (eating non-foods such as cigarettes, paper, dirt, etc.), rumination (regurgitating food and re-chewing it), rapid eating (including binging, and accompanied by the danger of aspiration or choking), and on and on.

Autism can be accompanied by a whole range of things that can have a negative effect on eating, including “abnormal” sensory experiences that relate to sight, taste, smell, and texture – any or all of which can cause an aversion to certain foods, and even a perception that certain foods are harmful or dangerous. I found one research site that says that 69% of children with autism are unwilling to try new foods, and that 46% have rituals regarding eating.

While there may be no obvious therapy for, or easy solution to, or simple understanding of, any eating disorder, those of us who are autism grandparents can be helpful in three fundamental ways:

1. We can realize that it’s probably not our cooking or our menu or our presentation that has resulted in a negative eating reaction from our grandchild. We can understand that it’s likely a manifestation of our grandchild’s unique type of autism. And we can act in a loving and understanding manner rather than the opposite.
   

2. We can make “eating” a priority topic for ongoing discussion with our grandchild’s parents: keeping them informed and welcoming their advice.
   

3. We can happily cheer and congratulate them each time there is even the slightest bit of “progress.”
   

Last week, for the first time, my granddaughter ate an apple by herself – not sliced, not peeled, not being held by us between bites. She did the whole thing by herself. And today she ate another one! One thing about being an autism grandparent is that you receive so much joy from so many things that other grandparents likely take for granted.

Autism Grandparents and Social Media

Are you like me in proudly posting images and information about your autistic grandchild on social media? Do you agree with me that social media is a great way to keep folks updated about your grandchild and her amazing doings?

And are you like me in never (until now) having developed a social media policy or set of guidelines regarding your grandchild?

And finally, are you like me in never (until now) having done much research regarding the dangers of social media?

I’ve now investigated five categories of bad stuff – most of which JC and I had never really thought about until now. After all, we raised our own children before there was social media.

1. BAD PEOPLE - There are dangerous folks out there. Photos of children are continually “borrowed” from Facebook and other social media outlets and then used for awful purposes such as on child porn sites and accompanied by awful captions and information. Other dangerous folks have involvements in custody battles and abuse situations, and they can determine where to find children by looking at location tags and landmarks in photos.

2. DIGITAL KIDNAPPING – I wasn’t aware of this until today. There are folks out there who “kidnap” photos and videos of children and give them a whole new identity for their own social media purposes. Research has found that some of these folks are childless persons who use social media to give the impression that they do have children.

3. POLITICS - I may think that posting a photo of my granddaughter holding a sign in favor of my favorite political candidate is important, but I haven’t (until now) considered that when she gets older she may resent it or may have incorrect assumptions made about by others because of the photo. I now realize that it’s not a good idea for me to post anything about Angelina that relates to politics.

4. BULLYING – Angelina is 4 years old now, but what if, when she is 24, one of her friends discovers that “cute” video that I posted of her trying to crack eggs for breakfast? And what if her friend shares it with her own friends and they share it with theirs and on and on? And what if Angelina is embarrassed by it? And what if everyone starts calling her a “cute” nickname that they came up with because of the eggs? You see where this is going . . . And much, much worse: the photo of her playing in the bubble bath, the video of her screaming, the story about her and the squirrel . . . What if a future potential employer discovers the old posts as he is evaluating her for possible employment. Whew!

5. OWNERSHIP – Who “owns” the rights to Angelina’s image and information? Up until now, I’ve operated as if I own those rights whenever I’m taking care of her. I now believe that I am wrong. I believe that she owns those rights and that when I’m caring for her I need to be her “advocate” and act only in her best interest. As soon as any child is able to have even an introductory understanding of this specific concept of ownership (research shows that this happens as early as age 5), our social media posts may cause the child to feel that they don’t have their deserved level of control over what gets posted about them on social media.

In spite of these bad things, I’m sure JC and I will continue to post photos and videos and information regarding Angelina, mainly because it’s a way to keep our friends and family updated and also to let them know how proud we are of Angelina and to be her grandparents.

But beginning now, JC and I will do the following things.

First, we will discuss with our daughter (Angelina’s mother) all of this information regarding social media and will adhere to whatever “rules” she offers.

Second, we will begin involving Angelina in the process of posting stuff about her on social media.

And third, we’ll develop a written set of guidelines for our social media postings about Angelina.

Angelina is a total joy and JC and I hope our use of social media enhances that joy for all of us – including Angelina – now and in the future.