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Support from Long-Distance Autism Grandparents

Some autism grandparents live so far away that in-person visits and in-person caregiving and in-person transportation and all of the other in-person supportive activities are impossible.

But long-distance autism grandparents can still provide wonderfully helpful support for their grandchildren and their families. Following are 10 specific ways they can be supportive.

  1. We long-distance autism grandparents can be loving and supportive of our grandchildren’s parents. The parents are confronted with an almost unimaginable group of physical, financial, and emotional challenges, and unconditional loving support from us can be truly helpful. We can refrain from criticism, bury any unresolved hatchets, and confirm our sincere approval of their actions and decisions. We can assure them that we are “on their team.”

  2. We can continually learn more and more about autism. A primary source of knowledge is the Internet. Websites of Autism Speaks and the Autism Society of America are great places to start. Our grandchildren’s parents are often so busy with daily challenges that they don’t have time for such research. The world of autism contains continual information about new therapies, new research, and new life experiences – all of which is available for us to share with our grandchildren’s parents as appropriate.

  3. We can offer to do research for our grandchildren’s parents – but in a non-forceful manner and only when appropriate. For example, if our grandchildren’s parents share that our grandchild is having problems with aggressive behavior, we can say, “If you like, I can do some research about that and let you know what I find.” Or the parents might say something like, “All of the local developmental pediatricians have multi-month waiting lists.” And we can reply with, “If you want, I can do an Internet search of developmental pediatricians in your area and then start calling them. And I could let you know if I find one that doesn’t have a long waiting list.” You get the idea. And above all, don’t be pushy.

  4. We can become involved with an autism group. Just about every community has some sort of organization or group that serves the autism community. It may be a local affiliate of the Autism Society of America, it may be an arm of our local government, or it may simply be a volunteer community group. An Internet search can usually find such groups. And if not, a telephone call to our local school system can help locate such groups. Our involvement will help us learn more about autism, enable us to experience first-person examples of autism, and provide us with a support group of persons who can be sources of information and knowledge that can be helpful to our grandchildren.

  5. We can send snail mail to our grandchildren. Everyone enjoys receiving personal snail mail, and snail mail can be a real source of joy and even education for our grandchildren. Every grandchild is different, but here are three general tips that can result in enjoyment. First, make the envelope visually interesting. If our grandchild likes animals, we can glue photos of animals on the envelope. If our grandchild likes Halloween, we can give the envelope a Halloween theme. Or the envelope can feature a rainbow, etc. etc. Second, make the letter a one-pager (or even only one or two sentences) that includes at least one picture. And third, make the letter interactive – that is, the letter should provide an opportunity for a response. “Can you name this farm animal? What sound does he make?” Or, “Today’s emotion is happiness. Do you know how to smile?” Or, “I am told that you can name all of the presidents. Can you name the three that are pictured here?” You may want to put your letters on notebook paper that can fit in a 3-ring binder, and that way your grandchild can collect them in a way that he can continually enjoy.

  6. We can do Facetime or Zoom or Skype or any other type of electronic visual communication. Following is an excerpt from Dr. Kathy Matthews’ previously published Blog: “First, let’s identify what you are going to talk about as we want to avoid the uncomfortable interview that can happen. Again, keep in mind that random conversations are harder for children with autism. Instead, it is best to have an interaction that is familiar, easy, and with clear expectations. To do that, think of an activity-based call. Does the child like books? Like pictures? Like videos? Think about something the child really likes and center your call around that. It will help the child (and you) to have a targeted goal for the conversation and to work to meet that goal. Also, keep in mind that this call is going to be short. The first few calls should focus on having a successful, meaningful interaction. I say QUALITY over QUANTITY when it comes to thinking about how long the call should be. I can share an example of a grandmother “Nana” talking to her grandson. In this example, she made a Facetime call to read a favorite story. She already knew that this story was his favorite and she took time at the beginning of the call to explain her plan to read it. He shared his excitement to hear the book. The call was short and sweet! They connected, had a good interaction, and both left feeling positive about the experience. Next time Nana wants to call, she can think about expanding her interaction even more!”

  7. We can, on a regular basis, send care packages and gifts to our grandchildren and our grandchildren’s parents. This means from us – not from Amazon. Everyone likes receiving a home-wrapped package that contains personally selected contents. The key is to put some thought into it. A personally packaged and sent gift sends a different message from an Amazon-delivered gift that resulted from pressing a few computer keys (although an Amazon gift can also be very positive). We can ask our grandchildren’s parents what sorts of gifts are appropriate. And we’ll have to figure out for ourselves what sorts of gifts are best for our grandchildren’s parents. Something as seemingly simple as a Bob Ross talking Bobblehead (inexpensive and it says wonderfully peaceful and calming things) can be perfect. It’s the thought that counts, not the amount of money spent.

  8. We can provide financial support if we are able. Almost every autism family needs more money than it has – if not for current expenses, then for establishing a fund for lifetime care. This can be a delicate area, but a good way to approach it is to be direct: “Tell us about your financial needs; we want to be as supportive as we can. We live too far away to provide in-person support, but one of the things we can do is help with money.” (And of course we want to give the financial support with no strings attached and without our parental control.)

  9. We can listen and commiserate. Just about everyone who has challenges needs someone to unload on – to tell details about the challenges, to go on and on and on all about their challenges. Our grandchildren’s parents need this. We can be wonderful listeners, and, when there is a pause, we can say simply, “I understand.” Thus we can be an amazing relief valve for all sorts of mental and emotional stress that our grandchildren’s parents are experiencing.

  10. And finally, we can be understanding when our grandchildren’s parents forget OUR birthday, when they are not appropriately concerned about OUR life, when they don’t thank us for something we do for them, when they forget to do something they said they’d do for US, and on and on. We can understand that “it’s” all about them, not about us. Once we are comfortable with this overall attitude, it will make their lives and our life so much better.

THE WHOLE POINT – Our grandchildren and their parents face a lifetime of challenges. And even we grandparents who live too far away for in-person involvement can provide wonderfully meaningful assistance and support!

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