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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!

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