Story contributed by a grandparent of a child with autism
My name is Linda and I have been a volunteer at Easterseals Crossroads since 2009 with both the autism support group and the Guild. My oldest grandson Nathan was diagnosed with autism in 2004 when he was around eighteen months old. Nathan was nonverbal until the age of four, but did communicate with sign language and an augmentative communication device. I’m proud to say that after years of intense therapies, Nathan is now an honor roll student in high school. Several years of ABA (applied behavioral analysis) therapy along with many other services helped Nathan become a fun and outgoing individual. Yes, he still has autism and always will, but his disability is overshadowed by his good traits and quirky personality.
I’m sure most grandparents would agree that becoming a grandparent is one of the most wonderful and rewarding experiences imaginable. All grandparents desire a loving and gratifying relationship filled with special bonding and friendship, but what if a grandchild has special needs? As a grandmother of a child with special needs, I was devastated hearing the diagnosis of autism. I grieved for that beautiful toddler, and especially his parents, but life happens, so self-pity was put aside, and work began.
Throughout the years, I learned Nathan could navigate a large hospital setting, guiding me to his therapy offices without uttering a word. I learned he was fascinated by traffic lights, green arrows made him laugh, and elevators were the best thing ever, especially the talking ones at Easterseals Crossroads. Nathan has grown and matured since his early therapy days and enjoys school, his friends, and family. He is an advocate for autism awareness and acceptance, and willing to educate others about his disability. He enjoys playing video games and traveling. Nathan also loves sports, which is his favorite topic of endless conversation, so I make sure my homework is up to date on his favorite teams. We both love Butler University Basketball, and it’s not unusual for Nathan to call me late at night to report the latest team stats. I love those phone calls!
My grandson’s disability is a part of Nathan, and I choose to focus on his abilities and positive attributes. My family is blessed with four grandchildren, all with different personalities and skills; however, autism will always be a segment of my family. It hasn’t been easy, as behavioral issues and meltdowns were numerous and overwhelming, and sometimes difficult for me to understand.
If I were to share anything about my experiences as a grandparent of a child with autism, it would be the following:
- Educate yourself. Educate yourself about the disability! Share information with extended family and friends. Take advantage of workshops and seminars. The Autism Family Resource Center at Easterseals Crossroads was a lifesaver for me. I checked out, free of charge, countless books and DVDs. I wanted to learn everything I could about autism and how to help my grandson. I learned a multitude of valuable information from reading, from other parents and grandparents, from Nathan, and lots of trial and error.
- Do not blame anyone. Parents often feel guilty after a special needs diagnosis, and second guess themselves with lots of what-ifs. Autism is a neurological disorder, so no one is to blame for the disability. Stay positive, encourage one another and always be a good listener.
- Support your adult children emotionally – with time and if possible, financially. Be available for after school pick-up, transportation to activities, weekend babysitting or fund a summer camp or an extra therapy.
- Give a heads-up. Routines and schedules are important for kids on the autism spectrum. Allow time to transition to a new activity or setting. Nathan’s meltdowns were improved as I learned to use timers and social stories for transitioning.
- Simplify holiday celebrations and family gatherings. As a toddler, Nathan wasn’t interested in unwrapping Christmas or birthday gifts, so my son suggested removing the toys from the packaging and using gift bags instead. Sensory issues are often exaggerated at family gatherings, creating an uncomfortable situation. Help eliminate anxiety by providing a designated spot for some quiet time if needed. Nathan still retreats to Gran and Papaw’s office if he needs alone time.
- Spend time with the child’s sibling. Life at home is often focused on the child with special needs, and the neurotypical child sometimes feels overwhelmed and neglected. Schedule one-on-one time with the sibling, plan a favorite outing, have a weekend sleepover and allow the sibling to vent if needed. Nathan’s twenty-one year old sister loves her brother very much, but sometimes still needs her “just me time.”
- Teach your grandchild to be independent and encourage responsibility. People sometimes think kids with special needs are totally dependent on their parents, grandparents or caregivers. Though this is true for some kids, many are able to share family responsibilities. I once asked Nathan what chores he did at home, and he responded “I don’t do chores, I do the computer.” Needless to say, several days later he was on trash detail and now has a list of household jobs.
- Most importantly, please accept what you can’t change about your grandchild with special needs. Love and enjoy that unique individual for the person he/she is becoming!