Today, my son asked me if my upcoming surgery would “make it so that you can get off the sofa and give us more attention?”
Owww! Gut hit there, kiddo. Let’s add some more mom guilt to the pile, shall we?
I know he’s capable of caring and being really loving, but sometimes? Sometimes I just want to hide in the bathroom and cry because of what he says. I probably would have this time, if I hadn’t had to save my energy for breaking up kid fights and stopping them from doing crazy stunts off the bench onto the crash mat.
Rough Day
Yesterday was one of those times. I get frustrated with him or angry at his behaviors, but I seldom get that mad at him. He’s a kid. He can’t always control himself, I know that. But what he said yesterday made me furious at him, the person. He stated “mommy’s being mean again. It’s not fair that we can’t go do XYZ because mommy doesn’t want to!”
He had asked to go to the top of the Eiffel Tower replica at the amusement park – with an observation deck almost 300 feet in the air. I explained that I was already feeling bad and that I didn’t want to make my body feel worse by doing something I knew would make me anxious. I don’t like heights, and I avoid them when I’m responsible for the kids because I know I might shut down and have a panic attack.
I patiently explained how anxiety makes my body feel when we go too high. I told him I was already struggling to just walk. And at the end of the discussion, he decided I was being “mean” by not doing what he wanted. That’s what made me furious.
Not-fun mom
Everyone tells me that raising kids while enduring a disability or difficult health condition will promote compassion and teach them empathy. That they will somehow absorb it by being around it all the time. My kids? They conclude that I’m the not-fun mom because I can’t do all the stuff, or they think I’m a bad mom because I’m not doing what their friends’ parents do.
Clearly, we need a specific curriculum designed to teach compassion. I’m not sure where to get that, but it’s on my list of things to find. Just as soon as I can get off the sofa.
Worse, I need some kind of guide for me to follow. I had told my husband on the phone that I just wanted to lay down and die (it was a REALLY bad day for me) and the Engineer wandered up in time to hear that. He brought it up today, and his sister panicked and started tearing up: “mommy, I don’t want you to die! I’ll miss you!”
I’m adding ‘compassion curriculum’ to the list of things I need, along with mobility scooter, a doctor who listens, and a new script for my inhaler. This is a good start, and I’ll build along the way. Maybe by the time we’re done the kids will learn some responsibility as well!
Homeschooling2e 
I’m on the countdown to my 5th and 6th surgeries in the past 5 years. This list of things my kids haven’t been able to do because of my health is long. I’m homeschooling TWO 2e boys, currently 13 and 14. Here’s my thoughts…
Compassion comes with maturity. I’ve watched my high functioning but on spectrum child grow into a compassionate young man. At age six, I would have told you he lacked the ability to be compassionate or empathetic. I was wrong. He “caught” it by watching those around him. He noticed all the meals we’ve been given, but he also helped me deliver meals to others. He watched my mom and husband care for me and was gently prompted to follow in their footsteps.
Give your children time to grow and mature and don’t sell yourself short. You’re doing a great job as a mom.
Our kids are amazingly good at manipulating us. Mine know instinctively what to say that hits at my own fears and insecurities the most. It sounds like that’s what your sweet Engineer did to you. Ironically, that very same ability is the one that can grow into compassion. Both require the skill of seeing something from a point of view other than our own. I know… it doesn’t take the sting away. I just hope it helps with the mom guilt.
You’re loving your children well… and that’s enough.
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Thank you for sharing! I love your positivity – hopefully maturity will bring compassion to my kids as well.
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I’m sorry you’re struggling.
I’ve been there. Undiagnosed Celiac Disease damaged my digestive tract…I have always had to balance the misery with getting the kids out!
In many ways it does expand their awareness of invisible disabilities. But it also gives lots of opportunities for them to say things that cut right to the heart.
Remember that teaching compassion doesn’t mean they won’t be disappointed or frustrated. Our job, in addition to teaching understanding, is to teach them how to appropriately handle their disappointment. And redirect into looking forward to something “I guess that means we get to come back with Daddy another time!” or “We can’t do this, but we can go and do that.” Sometimes just acknowledging disappointment helps a little, too. “I know you’re really sad about this. I wish I could make it better. But we are a family and we take care of everyone’s needs first and wants second. I need to keep you safe, and I can’t do that at the top of the tower today.”
Also…lots of parents say no for lots of different reasons. I suspect that those of us with health challenges suffer a lot of unnecessary guilt because our reasons are forced upon us. Good luck!
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Guilt is a huge big deal – we feel like we have no choice and our family suffers. Thank you for your support!
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Hi! My kiddo’s school uses “social thinking” curriculum, which is just this thing! It is breaking down how to think about other’s wants and needs step by step. Sorry if you have heard of it, but it struck me as what you’re looking for. They did a great activity the other week where they made cookies for eachother, so they had to think about their friend, but everyone ended up getting what they wanted.
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Lovely! Thank you for sharing 🙂
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