Monday, October 28, 2019

Parenting a Child with Special Needs is Different

I suppose it goes without saying that parenting is different when your child isn't typical.  Oh sure, there are some things that are the same....but clearly we have different priorities and experiences.

When typical parents say they're exhausted, they mean they've had a couple bad nights, or maybe that they have an infant who's still up several times to be fed.

Special needs parents mean they're still up multiple times a night, with their four or 6 (or 16) year old. They're waking to alarms several times, or staying up all night watching the video monitor to catch the nurse they're sure is sleeping, or listening for their child to climb out of the bed and go sneaking through the house, in hopes of catching them before they get out the front door and become one of those news stories with headlines like "Six Year Old Found Wandering on Interstate in Only a Diaper."

When typical parents talk about their child's upcoming surgery, they say things like, "it's her first! how awful that she has to do this when she's so young, she's only five!" And they talk to their friends with complicated kids, telling us how they guess we get used to this sort of thing.

Special needs parents know that you never really get used to sending your child to surgery. And we cringe at all the carrying on - especially when that first surgery for our friend's child comes the same week as our child's sixth or tenth or forty first, and our child is younger than theirs, and our child's procedure is something far more life-altering (or life threatening) than the tubes their child is having put in their ears, or the tonsils they're having removed.

When typical parents take their child to the ER, it's full of people they don't know, lots of rushing around and lots of complaints about waiting while others are cared for.

Special needs parents know the drill - we've been there too many times. We expect a wait (unless we're coming by ambulance, and even then we know there will be waiting), and come with plenty of distractions, for us and our child (and frankly, most of us don't go unless we expect to be admitted). The staff mostly know us and wave as we come through, and probably have already called ahead upstairs to tell someone to start looking for a room for us.

When typical parents are in an ER or hospital,  they see people in white coats come and go, asking questions and making decisions and treating their child.

Special needs parents know that not everyone in a white coat is a "real" doctor - there are med students and residents, and you can tell by the cut of their coat, and we aren't really fond of taking orders from people who aren't actual doctors, so we tell residents exactly that (bonus points if you've ever made a resident cry, pass out or look like they were going to pass out, or have gotten them to whine to their attending that having you there isn't fair because you know more than them).

When typical parents have a child admitted to the hospital, you'd think based on their facebook posts that the world was ending. Their 2 night stay was the worst experience of their life. And I suppose maybe it really is the worst thing that's ever happened to them, but it's hard for most of us special needs parents to imagine a life where that's the worst.

Special needs parents typically measure their hospital stays in weeks and months (and sometimes years). We know where the coffee machines are, where to park for the least cost (or how to get parking vouchers), and which cafeterias and restaurants have the least awful food.  We know which "beds" (hahahaha) offered by our hospitals are the least likely to leave us unable to move in the morning. We know what the rules are to get a space at Ronald McDonald House, and we know whether it's worth trying to get a room there or whether we'd better just stay with our child.

When typical parents send their kids off to school, they have a couple of parent-teacher conferences, and maybe a few notes or phone calls through the school year. They join the PTA to be supportive of their child's school, or they don't.

Special needs parents have IEPs.  If we're really lucky, we have more than one for a single child in a school year (they're supposed to be good for 3 years)....or several back to back for several children with needs. We make them write in sensory breaks, medical treatments to be done at school, goals for the school year beyond the standard curriculum. We work with aides and therapists and special teachers and more every year to help our children be successful.  And then, assuming we can figure out how to stay awake long enough, we join the PTA because we figure it's better to be known by our child's classmate's parents in hopes that they'll think of our child as a real person, rather than "one of those disabled kids in that special room."

When typical parents think of someone with a complicated medical condition with lots of medications and care, they think that hospitals are probably the best place to be..

Special needs parents think that hospitals are a last resort - that you're more likely to get sick there than anywhere else.

When typical parents say their child is a picky eater, they mean they don't eat everything that mom or dad think they should eat, or that they claim to only eat mac & cheese and chicken nuggets.  Typical parents will tell you that a child will eat if they're hungry enough, because they won't starve themselves.

Special needs parents know better - they've spent hours feeding their child, and hours in therapy hoping they'll taste one new food. They know feeding tubes. They know that some children (maybe even their own) eat only one texture or only one food, and will, in fact, starve if that's not an option.

When typical parents give birth, they hear their child cry, see their child immediately, usually hold them within a few minutes (maybe even an hour), and can room in with them during their stay.  They have "take-home" babies, who go home with them a day or two later.

Special needs parents often don't see their babies immediately after birth - their ears strain in vain for that first cry. It could be hours or days before they see them, and longer before they hold them. They go home while their children stay in the NICU.

When typical parents talk about their child's first words, it's with great excitement at first....but often followed quickly by complaints about their constant stream of words. More words follow seemingly effortlessly.

Special needs parents hope their child will eventually talk. Some of them wait for those first words forever. Others spend hundreds of hours and thousands of dollars on therapy to even get basic speech.

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