Thank you for so eloquently expressing what many of us parents having children with disabilities face. I have a 17 year old son, nonverbal, wears diapers. I have felt exactly what you describe.
The most awful thing about encounters such as what you described in the first leg of your journey, is that when you try to share your feelings, you are invalidated by “devil’s advocates.” The people who say, “but they were only trying to be nice. It’s wrong to make THEM feel bad for trying to do a kind thing by blessing you.” I noticed some comments are along this vein here. And maybe if I didn’t have a son with disabilities who will need 24 x 7 lifelong care, I would agree with those “you ungrateful person” commenters.
But I would argue, that when some strangers say stuff like that, it’s NOT a kind thing. It’s more they say stuff like that so they can feel good about themselves & #blessed (not to mention warding off the evil eye 🙄). But what many don’t realize is then you as a parent often must summon up energy you don’t have, to validate them and their niceness, or risk looking like a unstable, ungrateful jerk.
It can feel lonely keeping thoughts like these to ourselves, for fear of seeming like a bad “special needs parent.” We’re saints after all, right? That’s why God chose us 😂😂😂 (please note my sarcasm). Thank you for having the courage to write what I & many parents I know in the disability world are thinking, even if it’s not a popular sentiment with the general public. I look forward to reading more of your work. If I could highlight the whole article I would!
