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10 Ways to Make a Difference for Your Grandchild with Autism

By Jennifer Krumins

You are a grandparent! Nothing can compare with the boundless love that a grandparent feels for their grandchild. No longer limited by the need to juggle work, home, school and raising children into mature, self-reliant adulthood, the gift of grandchildren is one of life’s greatest blessings. But life doesn’t always deliver its blessings in the package we expect. The diagnosis of autism is for many a jolt into a new world; one that many have not even heard or at least have no knowledge of. Autism is a mysterious and heartbreaking neurological (occurring in the brain) disorder that occurs in 1 in 68 (CDC, 2015) children. It shows itself most prominently in impairments in language, communication, behavior and social relationships. For parents, the diagnosis tears at our hearts and brings the future crashing down, at least for a time.

This is where grandparents come in. You have awaited the news of your grandchild for months, maybe years and now the gut wrenching truth is almost too painful. Your children are suffering. What could be worse?

I know you want to help because you are reading this. You want to find a way to ease the pain. Your adult children need you. You cannot cure the autism or somehow make it disappear, even though you would love to. But you play a role that is critical and you have the power to make life more manageable for your children and your grandchild or you can undermine their challenges and exacerbate an already fragile situation.

Autism is not yet curable. But, time will show that it is not a “death sentence.” Life will find a “new kind of normal” and life will take on new meaning. There are therapies, education programs, and dietary considerations that will make life much more controllable for a person with autism.

So, you want to play a positive role in the life of your grandchild with autism? Here are a few tips that will certainly get you started on the right track:

1) Avoid judging or blaming anyone or anything for your grandchild’s diagnosis

When a negative experience befalls a person seemingly randomly, it is only natural for one to want to attribute the unfair event to a particular source or individual. In the broader picture of your grandchild’s emotional, physical and intellectual growth, however, negative energy is simply wasted energy. On the flipside, positive energy encourages one to learn about, understand and accept one’s reality, which can only help your grandchild to grow and thrive. Support your children in their efforts to come to terms with and negotiate this challenging path.

Listen, affirm and avoid offering quick judgments and /or solutions. What parents need most is to be supported and to feel affirmed that they are good parents and they will be able to cope; they are not alone.

2) Remember to view the disability in perspective

Your grandchild’s diagnosis is only one facet of her. True, it does impact the way that she learns, views the world and perceives herself in relation to others. But it does not define the whole child.

Your grandchild has a unique personality and abilities, strengths and weaknesses that are hers alone. Your ability not only to view your grandchild as a whole person but to validate her worthiness via your actions and relationship with her will also do wonders for her self-esteem, which is largely contingent on the reactions of others and the ways in which they relate to her.

3) Respect boundaries as a grandparent and remember that you are not the child’s primary caregiver

Support your children in their efforts to come to terms with and negotiate their challenges and offer an attentive ear. What your children need most is to feel encouraged and validated in their roles as parents. Accordingly, do not offer them unsolicited opinions, research or advice. Trying to convince your children to follow a certain therapy, forwarding links to various websites, or pointing out potential treatments for your grandchild’s condition may be interpreted as a lack of faith in their ability to raise their child and find the necessary resources and solutions that he needs. No matter how well-intentioned, offering unsolicited parenting advice will only undermine their authority and cause them to feel increasingly frustrated and insecure at a time when they are already quite vulnerable.

4) Adhere to the limits and schedules established by your children

While many grandparents are quick to throw routines out the window as a treat for the children in their care, raising a child with special needs often demands strict adherence to structure and routines which are essential for the proper functioning of both the child and family. Children with disabilities may have trouble coping with changes in schedules, food, sleeping arrangements and toileting, for example, particularly when they are away from home. Follow dietary restrictions, bedtimes, communication guidelines and other routines enforced by the parents, no matter how odd or tedious they may seem.

5) Don’t play therapist

While it is tempting to use the time spent with your grandchild to hone a specific skill or introduce a new intervention, your role in interacting with the child should be strictly that of grandparent. Chances are that your grandchild already has a variety of therapists committed to addressing her various needs. Trying to be both grandparent and therapist compromises your unconditional relationship and communicates to the child that you are not accepting her current reality. Your grandchild should look forward to time spent with you, rather than equate it with aversive feelings. Moreover, various physical therapies can pose potential injury risks if not performed by skilled professionals.

6) Encourage your grandchild’s independence

Help foster your grandchild’s self-esteem by providing opportunities for him to do things for himself, with your guidance. While the temptation is to want to facilitate everything for our children with special needs, being overly nurturing can sabotage a child’s chance to learn independence and feel the senses of accomplishment and pride inherent in mastering a goal on one’s own.

7) Provide your children with respite opportunities

Offer to watch your exceptional grandchild for a few hours in order to afford your children a chance to unwind and reconnect with each other and/or their other “typical” children. Your children may have unwittingly placed their marriage and mental health on the back-burner for a while in order to respond to the full-time demands of raising a child with special needs. Opportunities for relief contribute to the entire family’s well-being. A homemade meal or a house cleaning can also go a long way to ease stress and free up a bit more unscheduled time.

8) Offer financial assistance where possible, if you think it will be accepted graciously

The education savings plan that you may have begun for your grandchild may need to be used earlier than expected. You may wish to defray some of the exorbitant costs related to the child’s care, including therapies, programs, resources and respite care. Gift certificates for movies, dinner, spas, and fitness clubs are also a creative way to “force” parents to take time for themselves.

9) Spend time with the siblings of the exceptional child

So often, home life is centered on the child with special needs, causing siblings to get lost in the shuffle. Special days away or planned activities with you will give siblings the relief they need from a busy household and communicate the importance of taking time for oneself. Your undivided attention will also validate feelings of self-worth and highlight the fact that they are equally as special and loved as the exceptional child.

10) Communicate to the child with autism with short direct sentences and use written words or pictures when possible

If you want your grandchild to do something, it is best to state it specifically rather than ask a question. For example, instead of asking, “Do you want to rake the leaves with me?” it is more likely that you will get a positive response if you say, “Come rake the leaves with me. You can help me.” Avoid being loud, talking quickly and giving multiple steps. Your grandchild will most likely not be able to process all of your verbal instructions and they may ignore you or become very agitated. Pictures, lists and diagrams are often far more meaningful to most people with autism than are words. If your grandchild is upset or seems to lack understanding of something, it is useful to draw a picture/diagram, list the steps that will happen or use a picture schedule. For example, a list might say: 1) Play at park. 2) Snack. 3) Brush teeth. 4) Bedtime. OR even more specific: 1) Eat snack. 2) Brush teeth. 3) Read story. 4) Sleep.

While learning that your grandchild has special needs may initially evoke natural feelings of loss and helplessness, trust that you can have a deep and life-changing impact on your grandchild and his or her family, by offering the support that all need. You have the potential to make a huge difference whether you are physically near your children or not. Support, affirmation and love are what will get your child’s family through the challenge of raising a child with autism.

Jennifer Krumins is a parent, teacher and the author of three books:

Been There. Done That. Finally Getting it Right. A Guide to Educational Planning for Students with Autism: Lessons from a Mother and Teacher.

One Step at a Time: ABA and Autism in the Classroom; Practical Strategies for Implementing Applied Behaviour Analysis for Student with Autism

Autism and the Grandparent Connection: Practical Ways to Help and Understand your Grandchild with Autism

Please feel free to visit Jennifer’s website at www.autismaspirations.com or email her at krumins@autismaspirations.com.