1. Expect the unexpected – be prepared
With an autistic child, you never know when something will throw them into a major meltdown. It can happen when you least expect it. Case in point. My grandson is in vacation bible school this week. His mother was a little apprehensive, because it was a large group of over 300 children and a new setting for him. But he has done so well in kindergarten, she thought he could handle the new environment. At the end of the program, there were 300+ kids in the big church with a loud speaker leading the group in song. He had his hands up to his ears, which generally means there is too much noise or he is in unfamiliar territory. The leader said a prayer and then said Amen (Ahmen). He went into complete meltdown mode because he thought it should be pronounced Amen (long A). Tears and yelling. We have learned that anything that is out of “his” order can set him off. It can happen in the grocery store or anywhere. This is typical of children on the autism spectrum. So we roll with the flow as best we can, soothe him with the words and actions that work the best in the situation and generally get him out of that space. Redirecting can sometimes work. Humor and making it a game occasionally works. It’s best to have your “go to” bag of remedies ready in case an unexpected “crisis” develops.
2. Change what you can and let the rest go (a.k.a using the Serenity Prayer)
“God, grant me the serenity to accept the things I cannot change,
The courage to change the things I can,
And the wisdom to know the difference.”
This one has been major for me. There have been many times in the six years since my grandson was born that I have wanted to offer my opinion on everything from the food he is being offered, to the vitamins he is taking or not taking, to his bedtime habits to potty training. Most of the time I have kept my mouth shut, because ultimately, unless he is with my husband and me, I have no control over any of these things. Worrying about it all doesn’t do me any good, nor would it improve my relationship with my daughter, his mother. Yes, there are times when I gently offer my opinion or ask questions, and yes, my daughter gets impatient with me occasionally. But if I want a good relationship with his parents and want to keep spending time with my grandkids, I am very careful about offering my opinion. I concentrate on what I can do when he is with me. Trying different food offerings, encouraging him to stay in his own bed, and using my own ways of getting through to him are things I do have control over. My ultimate desire is to have a close and loving relationship with the parents and my grandchildren. So sometimes, you just have to let it go…
3. Savor the moments and make memories
My autistic grandson is not particularly affectionate. From the time he was a baby, we waited for kisses and hugs. There were moments when I could get him to come into my arms, but I had made it into a game. And kisses were scarce. But as time has gone on, he has gotten better about doing a half-hug and sometimes a kiss, but I usually have to ask. At some very special moments, he will get up into my lap or in my husband’s lap (he seems to gravitate towards him for sitting together) and do a good snuggle. It is all I can do to keep from giving him a huge squeeze when he gets in my lap, but if I did, he only would drift away. What I have learned is to stop, breathe and just take in the moment when he is snuggled, thank God for the moment, and consider it a memory I can cherish then and at a later time. His unstoppable giggling fits make me giggle, too. Another memory to be savored. An offhand quirky remark I am not expecting can be another memory. Jumping the waves with him in the ocean, his first kicks in the pool without his “swimmies”, funny games he wants to play. These are memories one can tuck away to be savored later, especially when he is having a bad day or is in melt-down mode. You can call upon these memories and remember the sweet little rascal he can be.
4. Learn to love the quirks, work with them and use them
My grandson loves elevators. He likes to know how they work, he likes the feeling of riding in them (especially the glass ones), and he loves to push the buttons. It doesn’t matter how many floors the building has, although the more, the better. He gets very excited. We have used this as an incentive when he balks at something that he needs to do, something we are trying to teach him (like potty training), and as a reward. I have even used it in a meltdown situation to change things up and get his mind off what has thrown him into a tizzy. It generally works like a charm. We have also used it as a method of teaching him his numbers. We don’t talk about elevators all the time and when it is time to re-direct to another topic, we do it that. In my experience, it is easier to work with the fixations, rather than forcibly try to ignore those quirks. I have even made an outing of it for him and a treasure hunt by going to mall and seeing how many elevators there were there. It was a lot of fun. We had cookie time at the end of the treasure hunt. A fun day with Nana.
5. Be reliable and available, when possible
It is important to be reliable and dependable for your own children and your grandchildren. Grandparents can play a key role in their grandchildren’s lives and relieve the stressed-out parents. Nothing brings home the reality of what it’s like to live with an autistic child than to spend time with them and it will give you a new appreciation for what the parents go through. It can be exhausting and stressful on a day-to-day basis and being a stable influence in your children’s and grandchildren’s lives will pay big dividends later. My own mother was only occasionally available to babysit my daughter, due to an addiction problem, and I know what my daughter missed. I was determined that I would help repair that brokenness in my own family – with my child and her children. I wanted my daughter and grandkids to know that I was there for them when they needed me. Be there with your wisdom, guidance and presence, if at all possible. It will mean so much to them. This does not mean, however, that you are at their beck and call. It is OK to have boundaries. Do not feel like you have to give up your own life to help them out. A grandparent who has his own interests and life is a happier grandparent. Your children will respect you for it and grandchildren will ultimately know that you offer them love, dependability and a soft, sweet place to fall.