At times, dealing with autism feels like fighting a war. As we try to gain ground, we are sometimes pushed back by the enemy or even forced to retreat. We think we are making progress, and then anxiety or sensory issues or some other aspect of autism takes us back and makes us feel our efforts have been futile. Recently, the reappearance of Alex’s anxiety attacks have made us feel that we have been living in a minefield, where we must tread carefully so as not to do anything that might set off his explosive behavior. During these difficult times, we need our allies most, even though it’s often tempting to shut out the world and try to deal with the problems on our own. Sometimes this self-imposed isolation occurs because we are embarrassed by our children’s behavior, even though they can’t help the way they are acting, and at other times we are so overwhelmed we don’t know how to reach out to others and explain our situations.
I must admit, I’m not good about asking for help. Part of my need for independence is pride and thinking that I can handle things on my own, and part of my unwillingness to seek assistance from others lies in my never wanting to be a burden to others. When people ask, “Is there anything I can do to help?” or say things such as, “If there’s anything I can do to help, let me know,” we often think they’re just being nice and don’t really mean it. However, I have been blessed with special people in my life who mean what they say, genuinely willing to help, so long as I am willing to take them up on their kind offers. I described some of these special people and how they have supported us in various ways in a previous blog entry, “Support,” which can be accessed by clicking here. They have set wonderful examples of how friends and family members can help parents of children who are dealing with autism, especially during the trying times when they need support most.
Thanks to the examples set by the allies in our life, I would like to offer the following suggestions for anyone who wants to help families dealing with autism.
1. Listen—Sometimes we just need to talk about our situation. Verbalizing our fears and frustrations makes them more manageable than leaving them racing around in our minds. We don’t expect you to understand everything we’re experiencing, but your sympathetic ear helps us deal with problems in a constructive way. I keep waiting for my mom to send me a bill for all the “therapy sessions” she does with me over the phone, allowing me to vent, brainstorm, and just talk about Alex and his issues.
2. Compliment—When things are going wrong, we often wonder if we are doing the right things. By reassuring us with kind words that we are good parents, you strengthen our confidence and boost our spirits. A friend told me this week, “Alex is so lucky to have you and Ed as parents,” which was what I needed to hear when we’ve been struggling to help him deal with his anxiety.
3. Write—Send parents of children with autism e-mails and notes from time to time to let them know that you’re thinking of them and that you care. We can’t always visit or talk on the phone because we’re dealing with the demands of our high-maintenance kids, but we can read your words when we have free time and savor the kindness behind them. I have saved thoughtful notes friends have sent at various times and will pull them out and re-read them when I need encouragement. One day this week when Alex was having an especially bad day (which, of course, also affects Ed and me), one of my close friends, who didn’t even know how frustrated I was at the time, sent me an e-mail to let me know she was thinking of me and hoping that Alex gets better for my sake as well as his. By touching base through writing, family and friends can help share concerns and offer support.
4. Pray—If you don’t know how to help, the best thing you can do is to pray. Pray for the parents to have strength, courage, patience, and wisdom so that they can help their children to overcome the obstacles of autism. Pray for the children to overcome their fears, sensitivities, health issues, and developmental delays. Pray for a cure for autism so that these children don’t have to suffer and their parents don’t have to struggle to help them. Let the parents know that you keep them in your prayers. Those who pray for us bless us with their thoughtfulness, reassure us that we’re not alone, and remind us that as we walk through the battlefield, God is always on our side. With our allies beside us, we walk toward the victory. As the Apostle Paul wrote in Romans 8:31, “If God is for us, who can ever be against us?”
“You and all your allies—a vast and awesome army—will roll down on them like a storm and cover the land like a cloud.” Ezekiel 38:9