ENCORE: 5 Articles Helpful to Autism Grandparents

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

Following are five articles that provide information that can be both instructive and helpful for autism grandparents. Each article has a different theme, and each is on a different website. I’ve included an excerpt from each article.

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Being a Grandparent to a Child with Autism

– Marcus Center for Autism

Here’s an excerpt:

“While a parent takes your grandchild with autism to a therapy appointment or attends a school meeting, you may want to offer to stay with any siblings. You can provide sibling support by helping with homework, attending recitals, or going to school programs and after school activities with your typical grandchildren to give them special recognition and time when mom or dad aren’t available.”

Read the full article here.

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30 Things Parents of Children on the Autism Spectrum Want You to Know

- Grandparent Autism Network (an organization that serves Orange County, California)

Here’s an excerpt:

Please let my child play with your child. There is no need to tag us in every Facebook article about autism. We can’t just “get a babysitter.” I’m not an autism expert.

Read the full article here.

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10 Ways to Make a Difference for Your Autistic Grandchild”

- Autism Awareness Centre, Inc.

Here’s an excerpt:

Gift certificates for movies, dinner, spa, and fitness clubs are a way to “force” a parent to take time for him or her self.

Read the full article here.

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Grandparents Have Feelings Too!

- Center for Autism Research

Here’s an excerpt:

Grandparents my struggle to understand information presented to them about their precious grandchildren. Many times grandparents, in an effort to be positive and lighten the mood, or wish this all away, will make remarks such as: “She doesn’t look autistic,” or “I don’t know what you are talking about – she is just like you were when you were her age.” Remarks of this nature can be very painful to the adult children raising their recently diagnosed child. It makes the parents feel isolated and alone in their journey, without the support of their parents.

Read the full article here.

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5 Ways to Connect With an Autistic Child When You’re Apart”

- Every Star Is Different

Here’s an excerpt:

At first Sunshine really struggled with phone conversations with us. She’s never liked talking on the phone and hadn’t had much practice before residential. Thankfully I came up with a schedule of sorts for our conversations a couple weeks ago. Understanding the sequence of the conversation, when they begin and when they end is incredibly helpful for autistic kiddos. Turn taking is also a great way to help with difficulties with communication. 1. We say our nightly hellos. Usually Sunshine has something she wants to tell me right away. 2. I ask Sunshine three questions. 3. Sunshine asks me three questions. 4. We blow loud kisses over the phone and say “I love you.” 5. My husband then reads Sunshine a scripture story and bedtime story over the phone.

Read the full article here.

ENCORE: “Curing” PGD

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

Are you like me? Do you have PGD? (I have an intense case of it.)

Dr. Temple Grandin continually says how valuable it was for her that her parents “pushed” her to do things for herself – difficult things. Dr. Grandin recommends that this is generally good for persons on the autism spectrum.

Dr. Grandin has never been a grandparent.

I have PGD: Permissive Grandparent Disorder. It’s a term that I coined to describe something that I suspect is common among grandparents. We have a tendency to “spoil” our grandchildren, grant every wish, make things easy for them, and of course to never make them do anything they don’t want to do.

Angelina is now 4 years old, and I realize that my PGD does not contribute to her progress. For example, I’ll put her clothes on for her even though my daughter tells me that Angelina dresses herself at home. For example, I’ll lift Angelina and put her into her car seat even though my daughter tells me that Angelina can climb in by herself. For example, when I’m keeping Angelina I’ll be attentive to her every second even though my daughter tells me that Angelina can spend a lot of time (30 minutes or more) playing by herself. There is a long list of similar “even though's.”

I have now sought advice from a variety of sources, and the following is my new list of things I’m trying to put into practice.

1. I recognize that I have PGD and I commit to “curing” it.

2. I will “push” Angelina on things that are in her short- and long-term best interest.

3. I realize that successfully doing something difficult will give Angelina a feeling of accomplishment and confidence.

4. I will sometimes offer Angelina a time limit for trying something difficult: “Let’s pick up toys for one minute and then you can stop.”

5. I will sometimes use a play-based approach when encouraging Angelina to do something difficult: “Let’s sing the happy song about the toys going to their homes.”

6. I will recognize that even though it’s easier and quicker for me to pick up Angelina’s toys for her, brush her teeth for her, put her clothes on for her, etc. etc., I’ll work hard to remember that it’s better to get Angelina to try to do those things by herself.

7. I will understand that Angelina is best motivated to do something difficult when she has lots of energy and has no stress or tension. And that the opposite is also true.

8. I will make difficult goals small enough that they are attainable.

9. I will reduce long-term goals into a series of small, short-term goals: “Our goal now is to learn to draw the first letter of the alphabet.”

10. I will sometimes use things that Angelina enjoys as rewards for doing/trying difficult things.

11. I will always, always, always shower Angelina with smiling praise when she accomplishes something difficult.

12. I will always remember that autism is different for everyone and that the most important thing is for me to “know” Angelina. And also that what works for Angelina works for Angelina.

ENCORE: Don’t “Should” on Yourself

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

We all accept that having a child with autism is challenging. It is challenging because we often do not grow up knowing much about disabilities or how to be supportive, unless you grew up knowing someone. Parents have to learn how to not only understand the autism, which means lots of conversations with experts and the introduction of a whole new vocabulary, but it also means they have to learn to make decisions on behalf of their child. Decisions that they have never made before. So we can all agree, this life is challenging for families impacted by autism. Also, of course, very rewarding. 

Now, for grandparents, they get an extra layer of hard! You are in the role of being supportive to not only your child, but also the grandchild with autism. That was foreign territory for your child and my guess is that in most cases, it is new territory for you too. Adding to that, you are likely in a position where you provide care to the grandchild, have him/her over, and are working to develop that special grandparent-grandchild relationship. It is all a tall order! Yet, it is also an extremely rewarding and positive experience when there is help and guidance along the way. Here, I’d like to talk about how to support the activities and interests of a child with autism. No doubt many grandparents love to visit or have their grandchildren visit the home. This is great! However, grandparents may notice that the grandchild with autism seems, in some cases, a bit particular about what he/she wants to do with their time. This can be challenging to know how to navigate but my one quick tip is to try your best not to “should” on yourself at these times. 

We all have things that we should do like eating healthy, exercising, and managing stress. We strive to be at our best but know that at times, we will make mistakes and fall below our own expectations. Families and children impacted by autism have these same aspirations. 

However, for children with autism, these activities may not come as easily. This is for several reasons. First, one of the key diagnostic features of autism is a child’s limited and restricted interests. What this means is that many children with autism have a limited number of activities or preferences. This is why you may see a child with autism who likes to mostly play with string, or seems to only like to play with trains, or who watches the same videos repeatedly. This may look like an “obsession” to some but it is part of the autism spectrum. What therapists, teachers, and many parents work hard to do is to expand the interests of their child through programs at school and in the community. However, it is a significant challenge to overcome. Imagine for yourself being asked to stop liking football so much and watch hockey instead. You might think hockey is fine, but you really prefer football. If someone kept trying to switch the channel from football to hockey or kept wanting to take you to hockey games rather than football, you can see how this might be distressing. The difference between you and the kiddo with autism is that likely you have numerous activities you enjoy…so just imagine if the ONLY activity was football. How hard would that be to leave the one thing you really like and learn to try to like something new? Hard! 

This issue is also related to the language issues inherent in autism. It is not as easy as saying, “you should try out some art classes” to a child with autism in an attempt to suggest other activities the child could get engaged in. In fact, saying something like that to a parent of a child with autism can make them feel like you don’t think they are doing enough or it can make them feel isolated because so many do not understand how challenging it can be to get a child with autism to acquire new interests. It can be done and in most cases and there will be people in the child’s life trying to help them to do so, but keep in mind how hard it must be. 

So all that to say, as we interact around parents of children with autism, we may be thinking that there are a lot of “shoulds” that need to happen. We should like different foods, or we should get the child to exercise more, or we should give them different toys, but as stated earlier, should is a great concept, but a longer process.