Tonight is a sad night for many people, but perhaps none as much as the Lynch family. Their 9 year old daughter, Mikaela, drowned after getting out of the vacation house when no one saw her.
This is a common tragedy, sadly, for parents of children with autism. Mikaela was severely developmentally disabled, having the cognitive ability of a one year old, and was alone with her brother who was, I believe, younger. He went inside the house and she left the yard.
It only took a short time from the news of her death for an accusatory piece written by someone who has CLEARLY never raised a child with a disability or autism, nastily scolding the parents for their culpability AND the rest of ur parents who best do our duty so as not have “missing kids”.
To the writer of that piece, I’m not linking your article because you obviously made to publish it as SOON AS YOU COULD for attention, traffic, and shock value. Instead, I’m going to give you a lesson on what it’s like to raise a child with autism, elopement issues and a developmental disability.
My Typical Day, 4 Years Ago
You wake up. You wonder, FIRST THING, if she’s still in her room. Sure, you’ve put up a gate, but she mastered climbing over that a month after you got it so you scramble out of bed and sigh with relief that she’s still in bed.
You get your children ready for school, and peek out to see the school van is there to pick them up. You grab child #1, while the cat you want to keep in runs out, and you have a momentary sh** pickle wondering where the HELL YOUR KID IS. Oh, ok, she’s right there, in the back of the playroom buried in toys.
You buckle her into the van and pray for the next 6 hours solid that no one will EVER TAKE THEIR EYES OFF HER AT SCHOOL. She could become one of those missing kids while you’re not looking. You jump every time the phone rings, and at 3:30, she returns home safely. You Thank The Lord. You get the kids in but the bus driver still has her thermos and you turn…OH CRAP WHERE DID SHE RUN TO? Oh, wait, there she is in the bushes. Whew! You bring her inside.
It’s a lovely day, but you don’t ever use your backyard, because you are terrified that your kids will run in opposite directions and it’ll be the one day someone drives doing 50 down the road behind your house. Or she’ll fall into the 9′ deep stone-lined easement behind your house. So you pump up the AC and make them play until you can’t take them begging anymore and put on a movie.
You’ve got the house locked up like Fort Knox so you decide to tackle the washing, again cursing yourself for being so stupid as to buy as house with an upstairs laundry room. You come down after 15 frantic minutes of shuffling dirty and clean clothes and do a head count. One. Crap. You have 2 kids… WHERE THE HELL IS SHE? Check the door – maybe the alarm is off? You call and call and call. You ask your other child if she’s seen her – she has no idea. You start The Hunt.
The Hunt can be over in 5 minutes or it can last a full 20 minutes. Your fear is that she got out by some trick of the door or window alarms not sounding, or she’s in the house and has somehow suffocated or drowned or electrocuted or swallowed glass in your COMPLETELY baby-proofed-still home, that’s not even remotely baby-proof for a child who can walk, climb, and drag furniture. Your fears continue to mount – crap, if only she’d answer! she’d answer, even if she’s nonverbal, if she knew how frantic I was! right? – your voice pitches higher & higher. Your heart is in your throat, racing, and your stomach feels like it’s encased in ice, and you’re sure she’s hurt, and Oh God WHERE IS SHE!?? Then you pull open the linen closet door and she’s curled up on a shelf, sucking her thumb, smiling at you. You wonder why you ever thought a linen closet was a “good” idea.
Your husband comes home in the midst of this and rolls his eyes at you.
You pass the “watcher” reigns on to him as you cook, clean, get ready for tomorrow, and put the kids to bed. You relax for a bit, then go to bed. You’re just drifting off when you hear a thud. You realize it’s the middle of the night, husband is snoring, and you run like hell into the hall to see if she’s made it down the stairs yet. She’s outside her bedroom door, deciding where to go.
You tuck her in between you and your husband, who grumbles, and spend half the night getting kicked and the other half reaching over making sure she’s still there until husband decides he’s had and puts a sleeping child back in her bed…round about dawn.
You drift off just as the alarm goes off, and start it all over again.
Things Are Better Today
This is not our life today, and I share it not to complain or fuss, or sensationalize, or get readership. It’s merely to inform people what it’s like. None of the above is exaggeration; this was YEARS AND YEARS of our life. I kid you not, after we did lose Zoe once, day and night was like this. And we did EVERYTHING RIGHT when she snuck out of our resort condo at age 3, it’s just that we didn’t go over the top – so we changed that.
It’s been years of peeing with the door open, listening to every peep and twice as hard to silence, and a hot, stuffy indoor life. At 7, she is far more mature, and rarely runs…sometimes she gets distracted and will wander. We got the fence and go out now, however, Zoe can now reach the bolts and slide locks so that alarm better not ever die. This is not something that we’ve ever gone through with Amelia, so I blame autism, thank you very much.
Did the Lynch’s make a mistake? Maybe. Or maybe they went to the bathroom, or slammed a toe in a door, or found something broken that needed to be cleaned right away. It takes an instant, and if she was like my kid, she was FAST. No attention-seeking “journalist” can ever make those parents feel worse than they do right now, but thanks, lady, for giving it your best shot. I’ll remember that fact-packed article about how not to be a negligent autism mama when I hear what sounds like a lock opening in the middle of the night. I’m sure it will help.
Meanwhile, please pray for the Lynch family and all the missing kids who can’t help themselves, and if you can, donate to charities that use the money to help families like ours, like TACA and NAA.
More Information
The NAA has ALSO weighed in on this terrible article (and also graciously did not provide a link). Read:
Darla says
I worked with a client with two autistic kids, and recognize your story as very true. I spent hours there. This is the norm for yours and families like yours. It is unquestionably exhausting. Thanks for sharing so the rest of us can understand. And peace to families who deal with tragedies like this latest one.
Gina B says
While all kids with autism are different, there ARE certain things, like this, that are true of so many of them – unfortunately. It is tiring, but, I will admit, Darla, the work is worth it! yes, peace to those families.
Barb @ A Life in Balance says
Any child can get themselves into trouble in a blink of an eye, even with an adult standing right on top of them. I’ve had babies roll off changing tables because I turned around for one second to grab something. How heartless of someone to blame the parents for the death of their child.
My heart goes out to you Gina for having to live on guard constantly, always worrying, always aware of what’s going on.
Gina B says
That’s a good point, Barb! Oh that is scary. Amelia fell off the couch when she was about 4 months old…nearly had a heart attack! (She’s a real hearty kid, didn’t even flinch.) Thanks, Barb, we are…not so much on guard as constantly as we used to. We are lucky that our kids have healed & matured & learned somewhat, but I’m still trying to figure out how to teach them to cross a street!! (City living would come in handy here, lol.)
Mary Ellen says
Whenever a child dies – regardless of how – everyone (and most especially other parents) likes to come up with a reason. A reason to make sense of the illogical. A reason why this unfortunate tragedy struck that house and not their own.
It is literally – and unimaginable reality – the death of a child at any age for any reason. I am sorry for the loss of this child. The parents – hopefully, will find a way to surround themselves with compassionate people.
And tune out those who just don’t know and should have just said nothing but “I am so sorry.”
Gina B says
Mary Ellen, I do tune them, and yes, I agree – I grieved NO LESS back in December for the children in Newtown, or for a child who died last year in our former church, even though I didn’t know the family. Thing is, this person has a BASIC misunderstanding of autism and how it affects families. I wrote this article to educate, actually…it can be difficult in ways that other parents don’t always get. And we – and our children- suffer prejudice because of that ignorance. You have a good point – people reach everywhere to make sense of senseless death, true, but that does not excuse cruelty, ignorance, and prejudice, particularly when it foster bullying and other behaviors that can hurt my family.
Janeane Davis says
Thanks for sharing this story. I feel so sorry for the family that lost their child. There is nothing a “journalist” can do to make the parents feel worse than just walking through their own home will. My children have no delays or developmental problems, but I know how fast they are and a child can disappear in the few seconds it takes for you to trip over a toy, fall on the floor and get up. Any person who does not believe that, has never been around children for a significant period of time. It is a horrible thing to blame the parents for this tragedy. I am so sorry for their loss and pray they find comfort.
Gina B says
Agreed! I’ve seen other parents run after their kids, who I can see maybe don’t have autism (I can never assume), and yes, kids are FAST. And all kids have an age where they don’t understand the consequences. Teens plenty often don’t get it and engage in dangerous behaviors that sometimes kills them! Are parents always to blame? Of course not. I just get fired up when I see parent shaming, because I don’t know any parents who aren’t wonderful, attentive, loving, caregiving providers…almost all of us are the “good ones” but stuff happens. And of all the parents, I feel like those with kids with silent disabilities like autism or ADHD get shamed more often. It has to stop.
Kevin says
The family just bought that vacation house last summer on a thin finger of land surrounded by water. In retrospect, maybe not such a good idea with a severely autistic child. Don’t hate me for the facts.
Gina B says
I don’t hate you for the facts, I’m just tired of the parent shaming. It’s a tightrope we walk and the BLAME that society doles out to parents of kids with autism is truly unacceptable.
Barbara @ Homeroom At Home says
Beautifully written and oh so heart-felt. Thanks for sharing and caring.
Gina B says
Thank you, Barbara. Sadly, another child with autism went missing and was found deceased since I wrote this. We have to fight this epidemic before we lose more children.
Cass says
Your story is familiar to me, Very familiar. That’s been our lives for almost twenty years, but I’ve never once left my son unsupervised in the backyard. I’ve never once expected a younger sibling to supervise and care for him. I’ve deliberately chosen places to live and vacation where there is no access to retention ponds, creeks, lakes or other bodies of water deeper than a foot. I’ve taken advantage of the technology to get a bracelet alarm that sets off an alarm if he gets more than a certain distance away from the base, to give us extra security and an immeidate warning if he tries to bolt. Why didn’t her parents do any of these things? I’m not a saint, or a martyr. I’m just a mom, no more special or capable than any other. Her parents could and should have done more, and she paid the price. It’s heartbreaking.
Gina B says
I hear you Cass, but I think one of the problems is that parents just don’t have all the information they need. And time goes on, and you get comfortable. It’s hard to argue their vacation choice, true, but I heard that she was dealing with a bee’s nest (trying to safeguard the family)? I don’t know if that’s true, it’s just that I feel like we don’t have all the fact, and we should stop passing judgement so easily. It takes one second for even an NT child to disappear from our field of vision. That’s what I was trying to convey – no one can be on guard 100% of the time.
And here’s an update: We have a fence my kids can’t get out of but the other day 2 boys tried to break in. That made me semi-hysterical because if they had, she could have gotten out, and could I have ran around in time? So we think we’re safe, and the unthinkable happens. (This is NOT a bad neighborhood, hubby grilled the boys – I don’t know WHAT they were thinking.)
Rebecca Whitney says
Thank you. Just, thank you. You are the first parent, after knowing and seeking and reading and learning and praying, for the 4+ years I have known my child was on the spectrum, that I have found I can relate to. Until your blog, I have felt so alone with my husband, in this roller coaster ride. We are not a family of 6, with a child who just happens to have Autism. No, it defines us. We are a family of 6 who suffers from our daughter’s affliction, together. I am sick and tired of people telling me she is “blessed” with this, and that we should accept her and “not try to change her”! I am tired of people who have kids with PDDNOS or Aspergers, that think they can compare to what it is like to have a completely mute 6 1/2-yr-old who delights in smearing the contents of her diaper, cries like a newborn, when she is; tired, hungry, sick, hurt, angry, wanting, thirsty, wants something different, insert here. I am sick of the nasty looks we get, when we attach a harness to her, so she won’t take off, again, in a parking lot, that split second moment my hand isn’t as snug as it usually is, around hers. I am “on call” 24/7 and I am tired, in every definition of the word. Other people see her, when she’s coloring at the table or stacking Tupperware on the floor, and they mock me for ever complaining about the smashing, ripping, dumping, tearing, wander off, running off, overturning, peeling, picking-at……she is like the Tasmanian Devil character, but cute and looks just like my husband. I try to describe her as an infant in a 6-yr-old’s body and say, “imagine putting your own toddler behind the wheel of your car, turning it on and popping it into drive; your toddler is not ready for that vehicle’s capability and only destruction will come of it.”…but they still don’t get it. You do.
Your blog is an extension of my own thoughts and commentary and somehow validates my exhaustion and I just want to say, I’m grateful. Keep up the faith and for all our sakes, don’t worry about being politically correct; the people behind this pandemic didn’t. I also would like to direct you to a documentary I saw recently on Netflix called “A mother’s courage; Talking back to Autism”. I have seen a dozen or so documentaries on autism, and learned this and that, but this one…this one is different. It completely changed the way I look at Amanda. I recommend it. It gave me hope—something those of us in our boat need as much as we need BIGGER baby products for bigger kids who are still developmentally at a toddler level. God speed <3 ~ R
Gina B says
Rebecca, your comment brings me to tears. First of all, I want to tell you from the bottom of my heart, that I am here for you…I will be praying for you. People like you and me know what it is to see a young child rip your heart out because of the destruction she is doing, and the realization that she may never, ever lead a life full of peace or happiness or health. I’ve seen how living with a child with autism can destroy people’s hearts and spirits and minds – we KNOW that the child is not to blame for this, but the burden we bear can be destructive on an entire family unit. I’ve talked about this before – how Zoe’s poor sleep patterns was extremely destructive for Amelia by the time Zoe was 5. We NEED solutions to keep our families together. And honestly, Rebecca, if it weren’t for my deep, true faith in Christ, I don’t think I’d get out of bed half the time. It is the ONLY thing that has pulled me through…and I say this as someone who’s done the diet, the biomed, the homeopathy.
You have encouraged me to keep this going, to move ahead and on and over page being “politically correct” and use this blog to FIGHT. Thank you! Is there anything at all I can do for you?
Rebecca Whitney says
Thanks a lot; now *I’m* crying, too. lol I don’t know you; to be honest, I didn’t even check to see what state live in..but I truly love you. I do. I said it.
Please just keep sharing and helping us out here. I’m sure that I represent countless others, also in our same boat, who aren’t comfortable with responding in this little gold comment box.
Your insight is therapeutic and the more I read your thoughts, the more I feel understood and, once again, validated. We are in a very unique world that has been thrust upon us; our ASD daughters weren’t born this way, it was done to them, and not by us, but those who deceived us. Autism has taken away the last of my naivety, thanks to the few hundred hours of research I did, trying to figure my child out. It’s revolting, to find out that so many different institutions each contributed their piece of the puzzle to poison our daughters’ brains and it’s insulting, when our common sense and intelligence is slapped in the face by idealists who insist we are aluminum-foil-hat-wearers and trying to find blame.
To be honest, I don’t want revenge, I don’t have time for vendettas. I want my child to speak to me. I want my child to play with other children. I want my child to sleep all night. I just want something closer to “normal”….keeping up my spiritual strength is indeed key, to achieving this; you are correct. I used to have a close bond with God….. and a sex life with my husband, for that matter. lol They have both been shoved into a dark, dusty closet, along with my work-out regimen and decorations in my living room. I thank you for reminding me of Him and how I can ask for some of this stress and confusion to be lifted, if only for a crucial moment, here and there.
Just know that you are a comfort, to this very worn-out mom. <3
Gina B says
Aw Rebecca, thank YOU! What you said about validation is REALLY important. It’s a lonely life out there, and it’s sad that so many on this path with us say, “Yea, I’m THAT nutty mom.” We’re not, we just want the best for our kids. I’ll keep on plugging along! And please, DO reconnect with Him. I promise you, He’s there any time you need, just take a few minutes out of that research and read a few verses of a scripture. Do it in the morning, if you can, so you can mull it or reflect on it during the day. What we really need is a devotional for autism moms 🙂 I was supposed to write one, but I dropped the ball on that big time 🙂
Rebecca Whitney says
I think you have enough on your plate, woman; don’t brow-beat yourself on not having that dream yet realized. Try allocation. Assign this task to your readership; maybe even challenge your fan base to see what they come up with and then award their efforts by publishing it on your web blog. This way, someone else can do it and many will be rewarded. You can light the spark and another ASD mommy can fan the flame, whilest the rest of us can get all warm by the fire (yes, I use way too many analogies; it’s part of my charm…yeah, we’ll go with that. 😉 lol ).
Gina B says
What a great idea Rebecca! Thanks.