Please don’t be sad mom & dad

Spilling your guts on the internet feels weird. Spilling your guts on the internet, knowing your parents are reading it, makes me want to throw up.

People feel bad for me. People pray for me. People encourage me. People praise me. But I would venture to say that no one sees an autistic child and says “yeah, yeah, but what about the grandparents’ feelings?”

I suppose it’s a triaged thought process and people think kid, parents, and tap out there. There are not any podcasts, books, and support groups directed at grandparents. Almost, seems like a behind the scenes grunt kind of worker, who is never thought of.

I know what it feels like to be a parent to an autistic child. But I can’t imagine being a grandparent trying to figure out how to help my child and their child. Sounds, like double the feelings and problems.

I often feel bad for all of Max’s grandparents. My heart twinges when he doesn’t want to be hugged, he won’t call them by their titles, doesn’t want to sit with them, or even be left alone with them. I can’t imagine what it feels like to have days where your grandchild is avoiding you, like you’re the boogey man.

I worry my parents are getting the short end of the stick with grandchildren. Don’t get me wrong, max is the love of my life, but his life looks different. Max is their only grandchild. What if they never see him score the winning homerun, speak clearly, spend the night at their house, graduate high school, move out, and get married?

Let me be clear, none of Max’s relatives have ever even so much as thrown a disappointed look his way. I have to reckon that some of my conceptions about the way my parents think are true. My other conceptions are a probably, just a mix of projections, attempts at mind reading, and fears running wild.

My knee jerk reaction sometimes is still to protect my family from Max’s tantrums, lack of affection, and disinterest in communication. Like many, I live my life trying to shield my family from painful moments. Unfortunately, I am a lousy actor, and my parents always see through my facades.

Olympic-level mental gymnastics are needed some days to reframe my thoughts into something positive or even bearable. Other days, my mind is at peace, and all is well with my soul. Those are the days that I realize what my parents do get to experience: seeing him running full speed from room to room, hysterically laughing while being tickled or chased, digging in the dirt, flapping his arms and doing the worm to show his excitement, pushing his head up to your mouth so you can kiss it, being dragged around by the hand to communicate what he needs your help with, watching the funny scenes of Curious George, and cutting up ice cream sandwiches while Max is impatiently doing the sign for please.

There is beauty in autism. It’s hard to see and it’s not a superpower or whatever weird narrative some people are shilling but there is beauty. The beauty can look like him finding joy in something most wouldn’t appreciate, saying a new word and recognizing we understand him, or finally agreeing to taste a new food and loving it.

Giving up on the facades of attempting to seem happy when I’m not, not exhausted when I’ve had three hours of sleep, or brave when I am scared is so freeing and restorative. Uncomfortable vulnerability and confiding in my parents renews my strength, encourages my spirit, and helps me realize that things aren’t always as heavy as they seem.

They love me, they love Max, and they don’t need my protection.

In the long run, Max will be watching birds with my mom and yelling at the dawgs with my dad.

Responses

  1. drjanet770 Avatar

    Rachel,

    WELL said! It was always difficult for my parents to understand my son. They loved him in whatever way he would let them. They didn’t do much to understand Autism when he was first diagnosed and their “tips on disciplining” were very mis-informed and useless. When he was happy and lovable it was easy. They always kept trying to be close to him and do fun activities, which was more common than not! When poor behaviors and meltdowns would happen though: Mostly they just steered clear… Usually- when they’d visit, as often his behaviors would be way worse since routines were thrown. So many challenges with interactions with his siblings and grandparents made it a real challenge. My X-husband’s Mom (before we divorced) was the only one who knew how to go with the flow and handle Mclain for overnights 2-3 times in his childhood. It wasn’t easy. It would’ve been so much easier for Grandparents had they lived closed and had a routine relationship with him and his sisters and our network fam. I’m sad for how little they knew my Mom before she died. I was thankful for caring for my Dad as he lived his last year and a half with us (trading between my twin and I). That gave my teenage son a reason to stay in control a little better at home. This was the time he started caring a little more about what other’s thought.

    My support group on 3rd Thursdays is for grandparents as well and we’ve had 2-3 different sets at different times.

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  2. differente28f203593 Avatar

    Every child is a gift. We’ve been fortunate to have received five of those gifts. When our children choose the people with whom they’ll share their lives, we get more gifts: in our case you, Rachel. And then grandchildren bring us even more gifts.

    Each one of those gifts is unique. As you say here, each one brings his or her own joys to the world, as well as problems. But every single one of us is here to be loved for exactly who we are, no more no less.

    We can’t earn the love of God or other people. If we try, we learn pretty quickly that we can’t win that game, and in fact, we don’t even know how to keep score. Love can only be given.

    Max is a gift like every other child. Just like everyone else, he deserves to be loved for exactly who he is: you and John do an extraordinary job of that every single day. There’s no telling where life will take him, but you’re giving him exactly what he needs to live the best life for him.

    As his grandparents, we love him for exactly who he is as well. Our children showed us that gifts come in all shapes, sizes, and flavors. Max fits right into this wild, wonderful assortment we call a family.

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  3. Dr. Alex Avatar

    Rachel, you may have hit on an unmet need out there. For every autistic child there are nominally 4 adults who are probably hungry for answers. Maybe you can write a book for these millions and help everyone!

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