Wednesday, May 15, 2013

Mikaela Lynch is dead: Every autism parent's worst nightmare

The back of my 4-year-old autistic son's torn shirt. He tried to escape as I wrote this.
Mikaela Lynch. You may not have heard of her, but I can guarantee every parent of an autistic child who has heard her story is torn up inside today.

Mikaela was a 9-year-old California girl with autism who disappeared from her family four days ago. Was. A couple hours ago, she was found dead. Dead in water near their vacation home.

To most people, it's a tragic story about somebody else's beloved child. To parents of kids affected by autism, Mikaela is our child. My child. Autism parents like me live in fear of a scenario like the one that took Mikaela's life, every single day.

My husband and I have two young sons on the autism spectrum. Both are wanderers. Many autistic people are. According to a study cited by AWAARE, a collaboration of autism groups that helps caregivers prevent wandering situations, about half of autistic children wander from safety.

Our local autism support group recently held a safety training led by a police officer from a statewide autism organization. He asked how many autism parents in the room had children who wander. I didn't see any parent whose hand didn't shoot up. The question for us isn't if our kids wander. It's what kind of wandering. Talking about wandering at a meeting of autism parents is a universal greeting, sort of like talking about the weather or football at a party. Is your daughter more of a straight wanderer (takes off to follow something interesting)? Or is she an eloper (leaves the area in search of something)? Maybe a bolter (flees a scene out of anxiety or excitement)?

Just this week, my 4-year-old scared the pants off of three responsible caregivers in three different incidents. My husband and I joke that our house is like Fort Knox or a prison. Only it's not funny. We have gates, locks and fences all over. Still, our older son managed to escape the house or yard three times this week alone. {And I kid you not, I just had to stop typing to because he just jumped the front yard fence that was specifically built high and strong to protect him. He has poor gross motor skills, the cognition of an 18-month-old, poor problem-solving skills, poor focus, yet he can do this. He ripped the back of his shirt from the hem to the yoke when it caught on the fence, which was the only thing that slowed him down enough to prevent me from having to chase him down. And I'm watching him.} Fortunately in our case, so far I've always guessed right where he's going. We have ducks, chickens, pigs and goats on our little hobby farm, and he loves them. Farm animals are one of his obsessions. (Just about every autistic person has those, too.) We always find him at the back of the property next to the barn, holding a duck or a chicken. This is despite our great efforts to keep him safe and near and in sight.

I live in fear of this happening again. I live in fear of being Mikaela's grieving parents. I live in fear of our 4-year-old deciding to cross the road to see the neighbors' cows instead of our critters, and darting into the path of a bull or, worse, a vehicle. I live in fear of him wandering to water, which he loves, yet can't right himself in. I live in fear that our 3-year-old, who's also on the autism spectrum and about as tall as the front grill of a pickup truck, will someday figure out that Grandma and Grandpa live just down the road and might take off to try to visit them alone — maybe while I'm turning to see why his brother is melting down again or what dangerous object he's chewing on this time. Our kids don't understand danger. A roaring vehicle, a lake, a fire. They mean nothing. I live in fear.

We try. We try to teach our sons to listen to directions, to ask or grunt or gesture for help, to hold our hands in parking lots, to stay near. We maintain eyes-on supervision. We teach hot, stop, danger. We use words, iPad apps, picture cards, sign language. My sons wear shoe tags in case they wander and someone finds them since they can't tell their own names, let alone their addresses or that they need help. But a picture card and a shoe tag don't save a drowned kid.

I don't know Mikaela Lynch's parents. I've heard some say they should be investigated, because who lets their severely autistic child wander off naked? They might be horrible, negligent parents. But I doubt it. I've been a licensed foster parent and a mandatory reporter of suspected child neglect and abuse; I'd be the first one calling for their heads if I thought they were negligent. I doubt it, but I don't know the facts. Here's what I do think I know about Mikaela's parents, only because it's true of every autism parent I personally know, including myself.

They're tired. You know how parents of two-year-olds are often bleary eyed shadows of themselves because they're constantly chasing, diapering, teaching, redirecting and removing things from the mouths of those active little ones who are so fully dependent for their every need? They're the "terrible twos" or "terrific twos," depending on your parenting philosophy, and it's a stage kids outgrow in several months or a year or maybe two. But sometimes they don't. Multiply that exhausting stage by years. Let's say 9 years, in Mikaela's case. Now put that active toddler in a 70-pound, 4-foot body. Or a 220-pound, 6-foot body, because autistic children who wander grow up to be autistic adults who wander.

Not only are parents like Mikaela's physically exhausted, but emotionally, too. Autism parents find themselves part of a club they never asked to join. (Somebody else came up with that accurate thought.) They're tired from worrying, from researching, from teaching, from seeking help, from fighting. They fight insurance companies for treatment their children desperately need, they fight for school services for which there's never enough staff or budget, they fight to find therapists to help, for doctors to understand. Sometimes they fight for family members to understand and for strangers to stop staring. They fight because they love their child with all their heart and soul, even when autism stops the child from being able to say, "I love you, Mommy," or from hugging her willingly or even from looking her in the eye. They fight. They're tired of fighting.

The siblings are tired, too. News articles report that Mikaela was outside playing with her 7-year-old brother shortly before she went missing. I don't even know the brother's name, but I know some things about him, too, because I know other autism siblings — my daughters, for example. No matter how hard his parents try to insulate him from the worries and the stress, he's tired of being the OK child in a house with a severely affected child. He's tired of his parents being stretched thin, of having to help care for his sibling when he just wants to ride his bike and throw a ball and read a book and play. Much as he loves his sibling, he's tired of being woken up, of hearing the meltdowns, of getting what's left of his parents' attention after they give more than they ever thought they could to the autistic sibling. He's tired of fighting his own guilt for hating what his autistic sibling does, but loving her at the same time. He's had to grow up way too fast.

So what does all this griping have to do with you? With the rate of autism today, you probably know a family affected by autism. And they probably need your help, even if they won't say so. If you don't know what it's like to spend nine straight years worrying that your child will wind up in a life-threatening situation just because you want to pamper yourself by, oh I don't know, spending 30 seconds in the bathroom peeing or something, then maybe you can help. Can you babysit? If that's too hard, can you read to the child in the next room so the parents can pay bills or shower? Can you attend a school IEP meeting to help advocate for the child's education? How about pick up groceries? Lend a hand? Lend a meal? Lend an ear?

Before the next Mikaela?


Maxine Rice said...

We will pray for your family. Anytime you need an ear please know you can call me. Need a day? Send the girls over or bring the whole crew and catch a nap while they play in yard. I can imagine the fear that you live with, hugs. Thank you for helping others to better understand it.

MG said...

I have two daughters in the spectrum (We should arrange for our kids to meet :-) )
I love your words and I surely home that as many people as possible read them.
All my thoughts and good wishes.

EditorCandy said...

Thank you, Sue for sharing your experience and your thoughts. I have a friend who has a son with severe autism. He is now 21 years old. He was always a climber, not sure if he was a runner, but definitely got into danger with his climbing. Once at our house he tried to climb our grandfather clock, fortunately, I saw him before the clock started to tip. She is a single mom, has been for many years.

I can't begin to imagine. I have a tiny sense of what it is like from the time I have spent with her and from hearing her stories. Stories of changing churches frequently because of no longer feeling welcome. She is a speech therapist in the school system, so has the knowledge and wherewithal to navigate the system for her child. I know there are parents who have no idea how to do that or what rights their children have.

You and your family are in my prayers. All families with an autistic will be in my prayers. I am going to call my friend tonight and ask her what I can do, it has been too long since we last talked.

TheFiveDays said...

This is perfect, and I will share if you don't mind. I live a couple hours from Mikaela's family and have been following this story constantly since Mother's Day. Two of my children on the spectrum, including my severely affected 9 year old son. One time he got out (and yes, our house has extra alarms and locks) and we couldn't find him for half an hour. My daughter (high functioning, 5 years old) got out last summer during therapy with three therapists and a caregiver in the house. A very pregnant woman saw her running down the sidewalk and chased her down, literally pulling her out of a major crosswalk. She would have walked right into the traffic. Unfortunately autism parents almost all have these stories. And I agree, it doesn't sound like she was being supervised when she went missing, but I am giving her parents the benefit of the doubt for now. It is an exhausting life caring for children like Mikaela and none of us are perfect all of the time. My heart is broken for that sweet girl and for her family.