Advice for Special Grandparents

Helen, her husband Stuart, and all of their grandkids!

With the holiday season upon us, I can feel the tension and anxiety building all around me.  What is everyone worried about?  They are dreading visting family. 

One of the biggest complaints from those I speak with, is that their extended family doesn't understand the needs of their child.  From sensory issues, to need for routine, predictability, table manners, food choices, and a thousand other things, the holiday season is hard on our kids.  And what do us parents want more than anything?  Understanding and Support. 

Here is my amazing mom's advice for all of the grandparents (or aunts, uncles, great-grandparents...) out there who struggle to understand what our special kids (and WE as adult children) need from them:

There but for the Grace of Gabe
By Helen Nickelson, proud Grandma of Gabriel, Nicholas and Matthew.

I often wonder what kind of a grandparent I would be if Gabriel wasn’t in my life. Would I be the “perfect” grandparent? Meaning the one who had a preconceived idea of how everything would be. “Perfect” vacations, birthdays, holidays…you know, the ones where the kids, parents, grandparents did whatever they wished, all of the time happy, able to enjoy the adventure of changes in schedules, habits, foods, all the while dressed perfectly, with perfect manners and smiling faces? 

Luckily (and I mean that) I’ll never know. Because of Gabriel’s challenges – and now Mathew’s, we are a family affected by SPD, autism and a few other diagnoses. But, my life with my child and her children IS “perfect”; at least perfect by my new definition.

Perfect now means we are together whenever and wherever we can be, doing nothing, or anything that allows us all to be comfortable, calm and happy. That doesn’t always look like what I had imagined. Instead, it may mean not visiting some places or participating in some activities because it would be too chaotic. It may mean on holidays some of the children may be at the table barefoot, wearing sweats, or standing instead of sitting, or walking away if needed. It may also mean one or more children may forgo the turkey in favor of a PB sandwich (on white bread with no crust, of course). It may mean no candles, because of fear of fire or any number of other “oddities”, but it will always mean spending time & sharing memories with the most wonderful children in the world….MY “perfect” grandchildren.

When I was asked if I would give some advice to other grandparents of special needs kids it came easily to me. Most of it is simply common sense and remembering the age old “putting your child’s best interest above your own.”

Advice for Grandparents of special kids:

Believe your child. Firstly and most importantly, believe your daughter or son when they tell you what challenges their child(ren) face and what accommodations they need. Seriously, they KNOW what’s going on. They are not making this stuff up. I realize it’s difficult because you don’t see it. You’re not there every day and most kids can “keep it together” for short periods…like when they are with their grandparents.

Educate yourself. Learn everything you can about your grandchild’s diagnosis. As they say, knowledge is power and if you have a better understanding of what your family is dealing with you will be able to be more supportive.

Realize your child isn’t choosing this. You do realize she wants to make you happy, almost as much as she wants to protect her child, right? Let her know you understand, as best you can, that her life is difficult and that she can count on you. And MEAN IT.

Grandparents of special needs kids need to be understanding and supportive.

Understand that your child and her family may not be able to come to your home for holidays because the trip would be nearly impossible for your grandchild. The change in routine, the lack of structure may be too much. Understand, too, that when you come to visit, you may need to stay in a hotel, because the disruption could be too much. There are many things we need to understand. The list is long and may include many “no” things; no staying up late, no HFCS, no artificial colors or flavorings, no rough house after dinner, and many “must” things; must have a certain amount of heavy work, must read three books before bedtime, not one, nor two, but THREE, must follow routine whether it be morning, lunch &/or bedtime. Just understand these are important for your grandchild to remain calm & organized, so BE understanding.

Understand when her child has a meltdown, that it is much different than a “fit” and is NOT the result of bad parenting or lack of discipline. And it shouldn’t be embarrassing to anyone other than the judgmental bystander. You know, the one who shakes her head or rolls her eyes. One day, you won’t even notice that person. That will be, as Oprah would say, an “aha moment” for you. I hope it comes quickly for you. It is a wonderful feeling.

Support your child. If possible, take the kids for an afternoon, a night, weekend or longer so your daughter or son can get away, relax, recharge. It must be nearly impossible to be on “high alert” all the time. The parents need to just be; be a person, a couple, if only for a short period. It will allow them to be better parents. And it will allow you to get to know your grandchild better.

Remember, this is not your problem to solve. Your child is fully capable and the best person to know what needs to be done. Your job is to listen, to actually hear what she is saying, to be there for her, both emotionally and physically. Understand when she tells you they cannot do something, or go somewhere, you desperately wanted the whole family to do, that she isn’t trying to punish you; that she is only doing what’s needed to keep her child calm & regulated. Don’t show your disappointment, it only makes her feel worse.

Acceptance. Finally, accept that life is what it is. Just because it’s different than what you imagined or experienced as a child or parent, doesn’t make it less than. If your grandchild is comfortable, calm and regulated, any experience will be enjoyable for him and that will make it enjoyable for his parents -- and THAT should make it enjoyable for you.

Actually, that will make it perfect, for your perfect family.

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Many thanks to my mom, a 'sensational' mother and grandmother for contributing her ideas, thoughts and hopes for all of us.  Family is what the holidays are about -- I here is my true hope that each and everyone of us remembers what is important this holiday season!