I can say it. I still have a fully active “sense-of-humor chakra”.
Everybody knows I have special needs kids, and each one of them has different special needs. Autism runs in my family like a freight train (and that’s a good thing), plus the youngest has epilepsy. And maybe because the universe is a weird, strange place, I’m also friends with and related to a number of other people who also have special needs kids. I’ve heard some people in apparently desolate and remote areas like New York or Chicago claim that the prevalence of “special needs” by any definition is overblown because they don’t know any personally. (Maybe SN folk are just avoiding them to be funny, which is totally what I would do.)
When we got our diagnosis for Daniel, I went looking for as much information as I could on how to cope with his issues (and even before that, I went on the same journey for Joseph and his autism). I found reams and reams of wood-pulp dedicated to a bunch of whiny, misinformed, panicky people, all crying in their beer about how their lives were changed irrevocably, how they had to grieve the loss of a “normal child”, blah blah blah.
(I’m not saying all books written on the topic are like that, just most of them.)
Here’s my message to you (and be aware that I’m going to keep stepping on tender little emotions for the remainder of this post):
Oh, get the hell over it.
And, yes, I can say that. I’m not being a bitch, I’m not being mean. I’m giving you some seriously passionate and sage advice in order to save your life and the life of your child.
What are you really grieving?
This is the question that I always come back to when I talk with someone who’s still trying to sort out their role as an SN parent. The answer is not always nice, sometimes it’s pretty damned selfish, but it’s important to dare to answer it honestly.
Some people really are grieving the loss of a “normal child”, but usually this is someone who doesn’t have any other kids and, thus, haven’t yet discovered that there’s no such thing, really, as a “normal child”. What’s possibly a little worse is when the “loss” is of the ideal of an above-average kid replaced by one with developmental delays or brain damage, and so there’s a double-whammy of grieving not only for a kid with a “normal life” but also one who supports the inflated ego of the parent.
Other people are grieving the loss of their personal freedom. The dirty little secret of parenting is that after 18 or 20 years (if you’re lucky), we can look forward to the the kids moving out and then we can go back to having wild sexcapade rock-and-roll parties with all kinds of illicit imbibements, or maybe travel unhindered all over the world, or maybe finally be able to Have Nice Things. With some types of SN kids, that’s not going to be an option. Some kids who are going to need life-long assistance are brain damaged, some have severe mobility issues, some have random bouts of emotional, physical, or neurological instability, and the first Full-Time Caregiver is the Parent.
The final kind of grieving that I’ve observed is the loss of flexible responsibility. This one is tricky because it has factors of the previous two elements, but it manifests as a “no one else can do this job but me”. This is never, ever the case unless you have isolated yourself from the whole world. There are government assistance programs, there are friends, there are family members, and there are spouses. And, yes, I include this separately because the most common occurrence of this type of grief immediately isolates the primary partner. The loss of flexible responsibility means that you can’t bring yourself to trust anyone else to do the job of taking care of your SN kid, and because it comes automatically bundled with a slew of panicky and fear-driven bloatware, you will eventually start doubting your own ability to take care of your SN kid.
But here’s what’s really going on:
There’s a wisdom that says that the universe doesn’t give you anything you can’t handle. The consensus among SN parents who enjoy a slightly higher level of emotional enlightenment is that their SN kids are there to teach them something remarkable about love, human development, themselves… the list is endless. I know a kid who is considered low-functioning (though not vegetative), and you can’t sit in the same room with him without understanding irrevocably that there is definitely a greater spiritual world. It’s inescapable, but it has nothing to do with what he says because, hey, the kid can’t speak. You might hear his story and feel sorry for him, but that won’t last once you meet him. There is no room for pity in his world because his love is too great.
The real scoop on what you’re supposed to do with an SN kid is – raise them. Love them. Care for them. Teach them everything you can, and do it at their pace because it’s their experience that’s important, not your expectation of what they should be. Don’t sweat the small stuff, don’t teach them to freak out by freaking out yourself whenever something happens that could be potentially awful. Train your closest tribesmen to know how to take care of them if you have to run to the store or leave the country for a couple of weeks. Make a choice to trust yourself and others to care for them, even if it means having the number for your favorite babysitter on the refrigerator when the kid is thirty years old.
“Normal” parents don’t sit around every single Saturday night, fretting about leaving their kids unattended and oh my god what if something happens while we’re out and blah blah blah – they get a sitter and boogie down like grown-ups. “Normal” parents don’t avoid all long trips or excursions because of the complications of having to pull over to let their kids pee. (Okay, I’m using “normal” in the sense of “parents of normal children and also not personally neurotic”.) Neither should SN parents. Outside of extreme circumstances, you just have to plan things a little differently. Timed stops for medication and potty breaks, daily mileage limits, avoiding flashy-light attractions sometimes, keeping the temperature set proper…
Because if you don’t try to make time and room for these things in a child’s life as much as possible, you aren’t an SN parent, you’re raising a cripple. Kids don’t know that they’re “different” until we tell them they are, and what we tell them about their differences defines their entire life. Bust your ass to accommodate every challenge so that your kids have the richest experience possible allowable by their needs, and make sure they know it’s “no big deal”.
If their status quo is secretly a remarkable accomplishment, just imagine what they’re going to accomplish when they decide to challenge themselves.