Ten years ago, grandparents Bob and Suzanne Wright founded Autism Speaks, an organization that conducts awareness and outreach activities aimed at families, governments, and the public. Autism Speaks’ goal is to change the future for all who struggle with an autism spectrum disorder. They have been an inspiration to grandparents everywhere.
While a diagnosis of autism does not lessen or dilute the infinite love we feel for our children’s children, it could be a shock into a world that we may not be familiar with. What is worse, we see our own children struggle with the adjustments. The impairments in language, communication, behavior, and social relationships are often difficult to understand and accept. Usually first diagnosed in early childhood, these symptoms can range from the most severe form, called autistic disorder, to a much milder condition, Asperger’s syndrome.
What role do grandparents play? According to a 2010 study by the Interactive Autism Network, grandparents are often the first to suspect a child may have autism and play a major role for children once diagnosed. Many make major adjustments in their lifestyle and finances to become proactive in their grandchildren’s lives.
The following are tips from parents, grandparents, and caregivers for those living with children on the spectrum.
• Expected the unexpected—be prepared. With a child with autism, you never know when something will throw them into a major meltdown. So try to roll with the punches as best as possible. Use the words or actions that you know work the best in the situation and bring the child back. Try making it a game or injecting humor even when you feel like crying.
• Let it go. As with dealing with all grandchildren, it is not up to us to decide bedtime, rules, eating habits, what is good or not so good for them. If you want a good relationship with the children, respect their choices. If you must, gently offer an opinion but remember, you want to help not cause more stress. Respect boundaries as a grandparent and remember that you are not the child’s primary caregiver. Raising a child with special needs often demands strict adherence to structure and routines. Children with disabilities may have trouble coping with changes.
• 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.
• Cherish the cuddly moments; they may not come often but they will in their own way. Make new memories, even a simple walk around the neighborhood will be cherished. Don’t play therapist. Chances are that your grandchild already has a variety of therapists committed to addressing his various needs. Your grandchild should look forward to time spent with you. 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. Parents often forfeit their own relationships in order to respond to the full-time demands of raising a child with special needs.
• Learn to love the quirks. Work with them and use them. Remember to view the disability in perspective. Your grandchild’s diagnosis is only one facet– it does not define the whole child. Your grandchild has a unique personality and capabilities, gifts and weaknesses that are hers alone. Your ability to embrace and accept your grandchild will also do wonders for her self-esteem.
• Be reliable and available when possible; however, you do not have to be available 24/7. It is okay to have boundaries. Grandparents should have their own interests and life; it makes for happier and healthier seniors.
• Spending time with the rest of the grandchildren is equally important. So often, home life is so centered on the special needs child that siblings get lost in the shuffle.
• If it is all new to you, educate yourself. There are lectures and family groups that deal with autism. (Check siparent.com/resource.) Learn the lingo and follow the lead of the parents.
• Once a child is diagnosed, move forward. If the parents accept the diagnosis, questioning or doubting might be very stressful for them. Be supportive.
• Be careful about relaying information you have read on the Internet or have seen on television shows. A lot of information is controversial or unsound. Stick with respected websites for information.
• Never, say anything that could be construed as placing blame or responsibility on the parents.
• Don’t make rash promises about babysitting or financial support, if you are not in a good physical or financial state. Be accessible, be loving, and be realistic.
By Staten Islander Marianna Randazzo, author, educator, and a newly minted grandmother.