Unlike parenting your own child, which tends to come with a healthy serving of self doubt, a mountain of responsibility, and the grind of the daily routine, grandparenting is usually a time of indulgence (for both the grandchild and the grandparent), harmless rule breaking, and general fun.
But what happens when your journey into grandparenthood includes an unexpected element in the form of an autism diagnosis?
Learning that your grandchild has autism can initially be a frightening and confusing experience. But, while autism cannot be cured, it does not mean that your grandchild won’t live a long and fulfilling life. There is a lot of excellent medical, therapeutic, and educational support for families of children with autism. This doesn’t mean things won’t sometimes be challenging, but it does mean that you don’t ever need to feel like you’re on your own.
Here are 9 tips to help you, as a grandparent, build a stronger bond with your grandchild, support your own child on his or her parenting journey, and create your own beautiful grandparenting experience.
1. Accept the new normal, be open in your conversations, and expect the unexpected.
Take a deep breath. In the initial stages of adapting to the reality of an autism diagnosis, there’s a lot to take in both intellectually and emotionally. Your first step to adjusting is to accept the situation, and — most importantly — accept your grandchild for who they are, not who you expected them to be.
As part of this acceptance, you want to practice being honest and open in your conversations about autism. It’s only through sharing the experience with those you love that you will be able to receive and give the support that’s needed.
Understand that there will almost certainly be days when things feel like they are spinning completely out of control. When a child has autism, especially in the early days before parents can establish routines, you’ll still be learning about things like what may be a trigger that can lead to a meltdown. Prepare yourself for this kind of experience, and try not to let it get the best of you.
While autism is a ubiquitous condition, most people know very little about it. Learning more about how people with autism experience the world and communicate can help you better understand your grandchild’s behavior while at the same time strengthening your bond with them.
Your education should focus on how autism affects social and other behavioral interactions, not on finding a cure. Focusing on a cure can be discouraging to a child’s parents, but focusing on how to connect more successfully with the child can help everyone involved.
There are many great organizations that provide a wealth of information about autism, including:
There are also some helpful books that can provide insight and education.
- Thinking in Pictures by Temple Grandin provides the dual perspectives of a scientist and an autistic person to give a report from “the country of autism.”
- There are also a few books written specifically for grandparents, including Grandparent’s Guide to Autism Spectrum Disorders: Making the Most of the Time at Nana’s House.
3. Be available. Be patient. Be a good listener.
An autism diagnosis affects the entire family across all generations. As a grandparent, you will worry about not only the welfare of your autistic grandchild, but also any other grandchildren as well as your own children. It’s important to find the right balance between offering help and just being there when you’re asked to help. Every family is unique, and every parent has their own way of doing things and of coping with challenges.
4. Steer clear of blame and judgment at all times.
Autism is a neurological disorder, not something that any parent caused through any action of their own. In the same vein, caring for a child with autism is a challenging journey that will have plenty of setbacks and wrong turns. There is no one right way to handle any situation, no one right kind of therapy or routine. Finding the right approach to day-to-day living is often a matter of trial and error. As your child navigates that path with your grandchild, do your best to refrain from expressing judgment or negative feedback. Instead, stay curious, offer encouragement, let everyone know they are doing a great job.
Even without an autism diagnosis, parenting is one of the hardest jobs in the world. Pay attention to what your child and their partner do and say that might give you hints to the best way to help. For some, having a home-cooked or takeout meal delivered will be a lifesaver. For others, getting some extra help around the house and/or just being there to spend time with the child can help alleviate stress. You can also gently nudge parents to get out of the house (while you watch the kids) by giving them gift certificates to restaurants, the movies, or a spa.
6. Make special time for all your grandchildren.
If you have more than one grandchild, you will want to make sure you’re carving out time to spend with each one, doing things they will really enjoy. Children with autism do best with regular routines, so you might consider finding a structured activity that you can share repeatedly.
And don’t forget to also make time for sibling grandchildren who might sometimes feel forgotten because family members put so much energy into their autistic sibling. As much as parents need a break from parenting, sometimes siblings need a break as well, and time and attention that’s just for them.
7. Respect parents’ boundaries, routines, and expectations.
It can be very difficult to keep your advice and opinions to yourself, or to adhere to your child’s parenting rules. After all, you raised them, so you have quite a bit of experience yourself. But raising a child with autism is a wholly different experience that typically requires careful and consistent attention to myriad details in order to ensure the child’s sense of peace and safety. Even the smallest change in a routine can cause an autistic child to feel and act on intense emotions. As a grandparent, the best thing you can do is pay close attention to any instructions your child may provide about engaging with or caring for your grandchild.
8. Be proactive about getting any support you need.
Though you may have all the best intentions about being there for your grandchild and your own child no matter what, there will likely be days when you feel overwhelmed, anxious, frustrated, or even angry. Learning how to connect with and care for a child with autism is a long-term commitment that is full of both amazing highs and heartbreaking lows.
While it’s healthy for you to be open and honest with other family members when discussing your grandchild’s diagnosis, it’s not always the best idea to lean on your own child or their partner when you’re struggling. Depending on the type of support you need, you might want to engage a therapist, or you may want to seek out a support group for family members of children with autism. There is even an organization called the Grandparent Autism Network, which is geared specifically toward grandparents.
9. Consider whether you might be able to provide some financial support.
Raising a child today requires a substantial financial commitment. While there are a number of financial resources available to families of autistic children (including some that are specific to Connecticut), they rarely are enough to cover even the most basic expenses.
The reality is that ensuring your grandchild’s comfort, wellbeing, and highest quality of life may require a wide range of therapies, programs, and other support services. Whether you are considering repurposing an existing educational savings account or interested in understanding what is possible with special needs planning, there are several ways that you may be able to help ensure your grandchild’s future security. (For instance, establishing a special needs trust may be an effective way to help.)
Take things one day at a time, and treasure the joys of being a grandparent.
As the grandparent of a child with autism, you have an important role to play. You can make a huge difference in your grandchild’s life simply by being there to offer love, acceptance, and support. You can also provide invaluable help to your own children as they navigate their parenting journey under unexpected circumstances.