Donna Furon is the grandmother of twin boys, who were diagnosed with autism in 1998. The boys will be 18 this year. She and her husband, Marc, are active in their lives, spending most Saturdays with the boys and helping in other ways. Donna has been involved with GAN for several years, and helps with the FANInfo site. She worked for 24 years for The California State University System, and retired from her last position as the Project Director of data warehousing, and then worked for several years as a consultant.
My twin grandsons were diagnosed as autistic at 25 months. My husband and I found out the day before we were leaving on vacation. One grandson is graduating from high school this year and is “high-functioning.” The other is verbal and lower-functioning, and will be in a transition service and get a “certificate” eventually.
Labor Day, 1998
“What did the doctor say? I was waiting for your call and didn’t hear from you.”
“Well, Mom, we were going to wait until you were back from vacation …”
“Tell me now.”
“The doctor said the boys are autistic.”
Autistic. Rainman. Can’t be … Why them? Why us? What should we do?
Hours of searching on the Internet and a flight to catch in the AM to start … a VACATION?
ABA .. behavioral diagnosis .. diet … vaccines .. sleepless night.
From my blog, http://gpautism.blogspot.com
What to say, what to do, where to start – oh my! Frantic – that’s how I’d describe those first days. Maybe a little denial. A lot of “there must be something we can do.” There are many things you can do – but as of now, nothing will change the diagnosis. There is no cure. You, your adult child, and your grandchild are starting on a journey.
Your expectations will change. That child, whom you secretly thought could become President someday – well, maybe he (and 4 out of 5 are boys) will; but you will find that achieving a communication link with your grandchild will be your new expectation – and you will celebrate it like no other celebration you ever observed.
Actually, let’s change the start of that last paragraph to “Everything will change.”
There is a very high divorce rate among parents of autistic kids. I don’t know if there is a statistical analysis, but my anecdotal observation is that one parent gets in a race car and makes the child the focus of his/her attention, and the other parent is left in the dust. And that does not make a good marriage partnership. Autism is extremely hard on parents – so the first thing you can do is support the parents.
What is “supporting the parents”? It can be many things. You need to decide what you can do, based on your own status (physically, mentally and fiscally). I’ll ask you to do something very hard – think long-term. Don’t use all your energy and/or money up in a short period of time. Here are some obvious things you can consider doing, based on your own circumstances:
- Don’t take sides. Be on your grandchild’s side.
- Give time. Are there other kids? Take them for special outings or just for time with you. They are likely to get so much less of their parents’ time now. Find some books and/or online resources that help them understand – to the extent they are able – what is happening.
- Learn all you can about autism – but more importantly, learn all you can about your grandson or granddaughter. There is no set treatment for autism. There are some behavioral techniques that are usually successful (e.g., ABA) – but how successful depends on the child.
- Offer information if you learn something new, and accept – as you must with all your grandchildren – that their parents are the decision makers. Support their decisions.
- Take on some tasks. Right now for example, I am helping get information about disabled student services community colleges, so my daughter-in-law can focus on conservancies and other matters. You can be a valuable resource to your grandchild’s parents.
- Get to know your autistic grandchild. Learn what his triggers are. Learn what you can do to help him. Learn how to deal with behaviors. Learn what works. Don’t be afraid to try something you think of – and if it works, share it! Learn from the ABA specialists and the parent the best ways to interact with your child.
- Accept that you may do as much as you can, and then twice more – and your grandchild may never say, “Thank you” or acknowledge you in any way.
- Give money if you can. If you have more than a little money that you think you would like to use to help, consult a financial advisor as to the best way to provide support and still protect your own position.
- Don’t take things personally, from your own adult child or your grandchild. They are under enormous stress and pressure, and may say things because they are exhausted and frustrated.
- It would be lovely if we could all be perfect and work in harmony towards the same goals and share the burden equally. It won’t happen. And we can and should just try our best.
You are on a journey. You worked hard and planned well, bought tickets and negotiated hotel rates. You did it all right. And in spite of that, the destination just changed. You are going somewhere else. You can’t rewind and start over. There is great sorrow and also great joy ahead. Pace yourself. Stay strong. Stay involved. Love all your grandchildren. Love yourself. Cut yourself some slack. That is my best advice.