Today, for the first time, Elijah's grandma got to see the beginning of a meltdown before we left her house. Many people, even family, have never seen him in this mode. In fact, a little before the meltdown, it was apparent he was off his game. She mentioned, “I've never seen this Elijah at my house before.” That got me to thinking...most people have never seen “that Elijah”. He is incredibly adept at holding it together in front of others.
Most people that meet my son in passing say, “He doesn't seem autistic.” And those that know him personally were surprised to learn of his diagnosis. “I must have missed something.” “I don't see it.” “I'm not sure how I feel about that.” I heard all of those things. I'll admit, there are times I question it as well. I see my sister, who has not one but TWO children on the severe end of the spectrum. People see them and can tell they're autistic. Sometimes I feel guilty that my high-functioning son is considered on the same spectrum as them because they are worlds apart. Sometimes I feel guilty saying he has autism because he seems so much easier to handle. My son can appear to be a typical child most of the time. Most of the time, he can hold it together in front of other people, out in public, at church or homeschool co-op classes. Most of the time, you might see a regular 9-year-old boy. But let me tell you what you DON'T see...
You see a little boy in jogging pants and a Minecraft t-shirt.
What you don't see is the half hour we spent this morning trying to get dressed. The “right” pants weren't clean. The three other pairs he tried on “didn't feel right.” The tags in the jeans were too itchy and the seams in the sweatpants hurt his legs. What you don't see is me finally caving, pulling a pair out of his dirty clothes, giving them a sniff test, and letting him wear them because they're the only pair he can wear today. You don't see the three pairs of socks we had to try because the first pair didn't go up far enough over his ankles and the second pair had a bump just over his pinky toe. You also didn't see him struggle (yes, at 9 years old) to tie his shoes and zip up his coat.
You see a boy with a nice haircut and neatly trimmed fingernails.
What you don't see is the process to get that haircut and those fingernails trimmed. You don't see me close all the windows, doors, and curtains before getting the nail clippers out because I am afraid the neighbors are going to call CPS on us based on the screams. You don't see his big brother, lying down on the floor in front of the hair cut chair, making funny faces to distract him from the terrifying buzzers. You don't see his toenails. Please don't ask to see his toenails. They haven't been trimmed in weeks, and probably won't be for a few more. The effort is monumental and can only be mustered up every so often. Today is not that day.
You see a kid that has good eye contact (so he couldn't possibly be autistic, right?)
What you don't see is that he spent HOURS poring over a book for kids with high-functioning autism. He learned tips and tricks on how to fake social niceties. You don't see him actually looking at your forehead instead. He's faking it. All you see is him looking you in the “eyes” while he goes on and on and on about his latest Minecraft adventures.
You see a normal boy running around the playground, playing with other kids.
What you don't see is that he isn't actually playing with the other kids. I see him. I see him running away, yelling something to no one. I see him hiding in the little see-through bubble. I see him sitting at the top of the slide, afraid to go down and crying because “even the little kids aren't afraid.” What you don't see is that normal boy trying to talk to the other kids but not knowing what to say and then running away. You don't see him crying on the way home because yet again, he didn't make any new friends and his brother made many.
You see a mom keeping her cool while her child screams and throws an apparent tantrum.
What you don't see is the dozens of times we've been through this. I have years of practice and patience-testing. You don't see that I know what will work (which is doing nothing until it's over) What you don't see is that he can't help it. He is not a brat. He is not throwing a fit to get his way. What you don't see is the countless hours I've spent in prayer, asking for strength to get through the next meldown and wisdom to know how to handle it. What you don't see is the heart-to-heart and snuggles we have after the fact, when he's able to think again. What you don't see is the tears in his eyes as he apologizes over and over for losing it in front of other people.
You see a kid eating his lunch.
What you don't see is that lunch is carefully selected from the few things he'll actually eat. They aren't touching on the plate, and if they do touch you certainly don't see him eat it then. What you don't see is that spoon. His spoon. The only one he can eat with. Not because he won't use a different spoon but because he CAN'T use a different spoon. What you don't see is that he has to have a seperate spoon or fork for each food because he can't stand to share them between foods. What you also probably don't see is that if he has to eat something with his fingers, there has to be a towel close by because he can't stand to have messes on his skin. What you don't see is him run to the bathroom several times to wash his hands while eating.
You see an incredibly smart, bright boy that speaks like an adult.
What you don't see is that boy sitting for hours on end in the middle of the night, reading book after book, memorizing facts. What you don't see is other kids making fun of him because he “talks funny.” What you don't see is that even though he's incredibly smart, he struggles to get school work done.
You see a cute boy that still holds his mom's hand in public.
What you don't see is that inside, he is complete panic. His brain is on over-drive. He's taking in all the sights and sounds magnified beyond anything we can imagine. What you don't see is that he's holding my hand so tightly, it's leaving fingernail marks in my palms. You don't see it, but he's squeezing my hand over and over in an attempt to calm himself down. What you don't see is that he's barely keeping it together and there is a meltdown boiling up inside him.
What you see is a pretty typical boy, doing pretty typical boy things.
What you don't see is that as soon as we get in the car or get home or get to somewhere “safe”, he becomes anything but a typical boy. The pressure of holding it together catches up to him. You don't see all the bottled up anxiety and feelings and fears and sensory input coming out in one GIANT scream followed by inconsolable sobbing. You don't see him pounding his head on his bed, saying over and over, “It's not fair. It's not fair.” You don't see me watching him and crying because I don't know how to help him in this moment.
Some days are surprisingly easy. Others are more challenging. I am so grateful that he is able to vocalize what he is feeling. I am so, so thankful we have the luxury and blessing of being able to homeschool so we can tailor his education. We're learning together every day how to handle him and his world. Even in the throws of a meltdown, I can often find something to laugh about, even if it's laughing to keep from crying.
Here's what you won't see: You won't see us forcing him into a mold or trying to make him “normal.” You MIGHT see us tease him every now and then. His quirky-ness can be funny sometimes. You might see him on a good day. You might see him on a bad day.
What you won't see is us trying to change him.