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!

Financial Planning for Autism Grandparents

As a grandparent of an exceptional child, you have probably already experienced many emotions – ranging from denial to acceptance, fear to joy, disappointment to fulfillment, balancing a feeling of powerlessness versus a strong desire to help, and many more. First off, know that all of these feelings are completely normal! And completely okay.

Grandparents are usually not in a position of primary decision maker for their grandchildren. Many grandparents find this to be a relief but with an exceptional child this can increase your feelings of powerlessness and anxiety. You have little control over the situation and any outcomes.

One big way to help is through financial resources, and often grandparents have more financial resources than their children do to help. The question is, what is the best way to help? And how do you know how to navigate the complex system of exceptional planning without interfering with all of the hard work that your kids might have done?

Parents and children often have complex relationships, and transparency (especially financial transparency) is usually not there. But in the world of financial planning for grandparents, the most important thing is to start the conversation with your child. Come to the conversation without judgment or preconceived notions. Know that whether they have completed their own financial and estate plan, or have not started the process, they are facing their families’ challenges in the best way they know how.

Let your child and their spouse know that above all, you want to help. You might know some basic information – such as if they have the means to have a financial advisor, and if they have done any estate planning. Is your grandchild eligible for and receiving government benefits? Here are some basic questions that could help you start to develop a plan for how you can best help.

You may even share this article with them, to start the conversation. But first, and most importantly, start any conversation by telling them you want to help, asking them how you can help, and listen as they tell you what they need. Be a sounding board for them.

1. How can I help? What are you struggling with the most today? What is something you need but have been afraid to ask for?

• Listen to what your son or daughter has to say here. They may not be thinking long-term because they are drowning in the day to day. Do they have proper child-care? Are they able to get any time to themselves? Have they been able to go on a date or spend any time with their spouse?

• Wherever they are at, help them find a solution to their immediate need, first. Whether it is a short-term or a long-term concern, meet them where they are. The rest can come later.

• Most people assume this is money, but I have found this is usually not the case. It could be as simple as a listening ear, a morning of childcare, a referral to a counselor, or the ability to take a vacation away.

• Be sure to set clear boundaries for yourself, and then offer any help you are willing/able to give.

2. What type of care does your grandchild need on a daily/monthly/long-term basis?

• What type of support do you currently have set-up (therapists, government benefits, microboards, circles of support)?

• What type of care might he/she need in the future?

• What type of schooling/education do they have planned for her?

3. Have your son/daughter started a financial planning process?

• Have they discussed contingency plans/estate plans for guardianship?

• Set-up a will/ special needs trust?

• Looked into an ABLE account?

• An ABLE account is a 529-a that is set-up for an individual with a disability. It works similar to a traditional 529 and can be used for college expenses but can also be used for any other expenses related to the disability.

The world of financial planning for exceptional children and their families is intricate, detailed, and emotional. Both you and your children might feel overwhelmed by the process. Leaning on a professional financial planner to help you through can relieve some of the stress and pressure.

[Note from John Bryan, Coordinator of the Autism Grandparents Club: The author of this article, Kristin Carleton, heads a financial planning service – Eli’s Village (www.elisvillage.com) - in Richmond, Virginia where I live. I asked her to write this article. Richmond, like all metropolitan areas, has a lot of financial planning professionals, and many of them can advise their clients regarding special needs trusts and a variety of other vehicles to serve short- and long-term financial needs of “exceptional children” and their families. But Eli’s Village has an add-on that is not common among financial planning companies: a hands-on holistic approach that addresses ALL of the family’s challenges – not just the financial parts. Kristin’s expertise is in financial planning, unlike the expertise of her Co-Director, Dr. Kathy Matthews, whose education and 20-year professional expertise are focused on exceptional children. And Kathy and Kristin are both parents of exceptional children. If your grandchild’s family is a candidate for professional financial planning, hopefully their community has a company that has a first-hand understanding of the wide range of needs and challenges, and that is able to provide professional guidance well beyond the financial aspects.]

Where Do I Begin? A Grandparent’s Start-up List for Newly Recognized Autism

I remember when I first realized that my almost-two-year-old granddaughter (who, along with her mother, lived with JC and me) almost certainly had autism. Fortunately I knew two persons who were qualified to answer my question: “Where do I begin?”

Over two years have now passed since then and I know first-hand that other grandparents are continually asking, “Where do I begin?” Of course every child with autism is different and every family has its own unique dynamics, but following is my recommended 12-step answer to grandparents who ask, “Where do I begin?”

1. Decide to prioritize being fully supportive, understanding, and loving to your grandchild’s parents. When autism enters a family it always comes with a full range of unpredictable challenges including with interpersonal relationships. Our grandchildren’s parents don’t need us grandparents to add to those challenges.
   

2. Be supportive and encouraging for your grandchild to be professionally evaluated for autism – the sooner the better! A valid diagnosis will open the door to a wide range of things that will be helpful to your grandchild and your grandchild’s family.

3. Start learning – and continue learning always - about autism. We grandparents can take the lead on continually learning about autism. Often our grandchildren’s parents are so consumed with challenges that they simply don’t have time to read about autism, to search the Internet for information, and to join support groups. We grandparents can begin the learning process by simply searching the Internet: “What is autism?” The first thing that we will learn is that autism is different in everyone. The stereotypes depicted on television and in movies are not what our grandchildren are like.
   

4. Take an interest in, and become involved with, your grandchild’s medical/health issues – if, of course, your grandchild’s parents welcome such involvement. It is common for children with autism to have health concerns, and we grandparents can not only be knowledgeable, but we can also help identify local health practitioners.
   

5. Take an interest in, and become involved with, your grandchild’s needs for a variety of therapies – if, of course, your grandchild’s parents welcome such involvement. Children with autism often need specialized therapies for speech, eating, normal physical activities, etc. We grandparents can help identify such needs and can help identify local sources of therapy.

6. Help with the process of identifying available public services and resources and then navigating the sometimes difficult bureaucratic process of acquiring them for your grandchild. Every community’s range of public services is different, and we grandparents can start by doing some local research and contacting persons or organizations that may be able to get us started. If our community has a nonprofit autism organization, that’s a good place to start.
   

7. Give a lot of thought and planning regarding details about how you will relate to your grandchild’s parents. Start by giving thought on how you can share your opinions and suggestions and information in a loving manner without being overbearing or judgmental. Determine how much of your time and resources you can give to be helpful: transportation, independent caregiving, etc. We grandparents can be vital helpers for our grandchildren’s families!

8. Determine how your physical home can be transformed into an appropriate place for your grandchild to visit for short- and long-term occasions. Do you need safety mechanisms to keep doors closed, to make stairways safe, to make furniture corners safe, to guard the stove or oven? Do you need to create spaces for toys, for clothes, for sleep? We can ask our grandchild’s parents for their advice on all of this. The point is that we grandparents can transform our home into a safe, comfortable, and enjoyable place for our grandchildren to visit.
   

9. Determine how much money you can provide to help with your grandchild’s needs. When autism enters a family, it comes with a wide variety of financial needs. The most expensive needs are for health, therapies, and schooling. And of course the HUGE financial need is for lifetime support – such as a special needs trust. We grandparents can determine at what level we can help financially. We can consider sacrificing our own financial plans – such as for vacations, luxury items, hobbies, etc. – so that we can help our grandchild’s family. If we’re retired, we can consider going back to work. We can mortgage our homes, etc. etc. etc. The point is that our grandchild is going to need a lot of financial help, and early on we should consider how much we are willing and able to provide.
   

10. Begin telling relatives and friends about your grandchild. Autism is not something to be secretive about. We grandparents will be doing a service for our friends and relatives by telling them about our grandchild; they will appreciate being educated not only about autism, but about our own family. The most recent research (2020) has determined that autism is now diagnosed in 1 in 54 children. We grandparents can and should be a source of education for our personal networks.

11. Join autism organizations and support groups. Often autism parents just don’t have time to be actively involved with autism groups, but we grandparents often do have time. We can determine what groups are available in our local community and then become involved. We will not only gain knowledge and information that can be helpful to our grandchild, but we will also gain a network of persons with whom we can commiserate.
    

12. Recognize that autism will be a major component of the rest of your life. Autism is not something that will go away or be “cured.” Our grandchild will always have autism and will always be faced with challenges. We grandparents can determine that for the rest of our lives we will provide understanding and support and love for our grandchildren and their families. And we can adjust our plans for the future accordingly.

FINALLY – I know from experience that it seems overwhelming when first confronted with autism. But we grandparents have an opportunity to be wonderfully helpful and supportive. One benefit for us is to be needed and wanted and appreciated! And another benefit is the ongoing feeling of pride and joy each time our grandchild shows even a hint of “progress” – even when it’s something that other families might dismiss, such as looking us in the eyes and returning a smile!