Dear Gabbie on OSPL,
When you volunteer at a center for people with disabilities a couple of hours a week, or month, and only for a specific disability which isn’t caused by genetics, but by something happening in late pregnancy, or before age 2, and then claim that because of that you know what it’s like to care for disabled children. You are being naive.
I have worked with them since January, hours up on hours, and I would never claim I know what it’s like. I would never say that “hey, you can do it because these people did it!”, because these parents had to face the heartbreaking decision of giving up their children for every other week, or completely let them move out, because they could not meet their children’s needs, and their own basic needs at the same time.
I work with children where you have to always be able to hear them, or always be in the same room as them, I work with children who get epilepsy attacks so severe where you need to plan every second of the day to make sure it won’t happen (and it still does, generally). I work with children who are far beyond their infant years, but still looks and/or acts completely like one. Where a 38.3 fever can be devasting. Where an O2 sat of 53 really isn’t out of the ordinary. I work with children where getting them dressed is a work-out. I work with children who cannot speak or communicate at all, but you have to read their body language, facial expressions to be able to discern if they want to be alone, if they’re too hot/cold, if they’re annoyed by the sound level, if they want to be hugged, etc.
To push this on people, to claim that they HAVE to have children like these when they know in their hearts they can’t properly take care of them, that it would have such a negative impact on their lives. If you are comfortable with completely giving up your life, never being able to have a moment for yourself again until that child dies, letting your other children suffer (oh they will, as a sibling of a child who was extremely sick at one point, they will suffer immensly).
You can talk about the fact that “they deserve a shot at life, too”, but the lives some of them live aren’t lives.
Of all of the 8 kiddos I work with there is only one, or two, of the children who have a disability I can say that I maybe would be able to deal with. Even then….
Do you know how heartbreaking it is to not know how much a child understands behind it all? If they are in there at all? As cute as a child who laughs sitting in their chair looking at the white ceiling is, it is heartbreaking as well.
Do you know how heartbreaking it is to know that these amazing children will die much too soon, some of them maybe only a few years from now? How heartbreaking it is to know that their parents weren’t able to be there for them despite trying so hard? That some of them broke under the pressure and can’t deal with their children at all?
I love these children, us working there often say we want to take them home with us because they are so wonderful. They are. We work there between 8 hours a month to 50 hours a week, we can stop worrying when we get home, we don’t have to sit up at night with paper work, don’t have to push up every meal that day until the child is *barely* asleep at 10pm. We don’t have to wake up & get up at 3am every other night for 3 hours for 15+ years because your child woke up.
It’s easy to say you understand when you’re volunteering with people with severe disabilities, but you don’t. I can’t say I do, either. It shows naivety, it shows a lack of understanding. Cerebral palsy can be incredibly severe, my twin have several friends with CP, and some pretty much confined to their chair, unable to talk at all. However, CP rarely has the medical needs of the children I work with (we’re talking about up to 15 medications a day, many of them life sustaining)
Also, slow clap, for once again going “oh I’ve seen people do it, so you can to!” which you’re now becoming famous for. It’s not even “I did it, so can you” which is also horrible. You haven’t even done it, yet demand other people to.
Naivety is showing, Gabbie.
A pissed off and annoyed DSP