xmlns:og='http://ogp.me/ns#' Yeah. Good Times.: Wandering backlash: One mom's response [Guest post]

Monday, May 27, 2013

Wandering backlash: One mom's response [Guest post]

Today I am more than thrilled to be hosting a guest post written by my friend Jo Ashline. I thought about giving her a lengthy introduction but I think her gorgeous words speak for themselves.



Andrew loves to explore the world. And we are never far behind.
We try.

We try so hard.

We are honest, open, willing to divulge our deepest regrets, our highest hopes, our most intimate fears. We do so for many reasons; the most important, the most worthwhile is to connect with parents and families like ours and educate those who will – at some point in their lives – encounter one of our loved ones on the spectrum.

We compromise. We apologize. We make every attempt to consider everyone’s perspective, even when it’s not humanly possible to please everyone. Still, we give it the old college try because God forbid we write about the one thing we know best: Our Lives.

Yet, no matter what we say, no matter what we write about, there’s always someone waiting in the wings, rubbing their hands together in earnest, ready to point out our faults, prey on our weaknesses, discount our personal experiences and twist our truths into something ugly and false and demeaning.

I, for one, have had enough.

Last week autism parent bloggers across the nation banded together to honor three young children with autism who tragically lost their lives to wandering. Each one had, in a matter of seconds, managed to escape their safety nets; all three were later found lifeless in a body of water.

Their families, already facing the worst kind of devastation, became the focus of unimaginable condescension, scrutiny, and judgment from individuals who had no idea what they were talking about.

So we turned on our laptops, logged onto our respective blogs, and began chronicling our own experiences with elopement, wandering and bolting in an effort to educate others and empower the victims’ loved ones as they faced their incredible loss.

And then, once again, it happened.

Comments were left that questioned our motivation; assumptions were made about abuse; fingers pointed at imprisonment; voices lashed out, accusing us of mistreating, misunderstanding, mismanaging our children.

We were ridiculed, insulted, ostracized, targeted, and told, in no uncertain terms, that we were irrevocably damaging our offspring.

And yet, no matter what anyone out there has said, or continues to say, the truth remains. It’s a funny thing about truth; it doesn’t go away, just because someone wants it to.

My truth is as follows:

Your stinging words, your crucifying comments, your unfounded accusations of abuse have not stopped my child from eloping or wandering or bolting this week; not once.

Your judgments and finger-pointing and uninformed assumptions have not made my vulnerable, innocent, little boy safe this week; not once.

Your naïve suggestion to change the way we think about wandering, to allow it to naturally take its course and watch it resolve before our very eyes has not kept my son from attempting to run into a busy street filled with cars this week; not once.

Your derogatory deviations from the reality we live each and every day have not halted my son in his tracks this week, while he made his way towards a swimming pool that would swallow him whole if only given the chance; not once.

You are not the hands that guide him away from danger; you are not the arms that grab him before tragedy strikes; you are not the heart that pounds when you realize how just how close he came to a tragic ending.

You do not live this life of mine.

You do not hold your breath as you guide my child through weaving crowds, wide open spaces and treacherous terrain known as the outside world, exhaling only when he is back in the safe confines of a home designed to deter Fate and Odds from thinking they can get one over on you.

You do not lie awake at night, waiting for fitful sleep to arrive and grace you with the very nightmares you work so hard to prevent when you are awake.

You are not the one who knows that safety is just an illusion, designed to make you think you can finally let your guard down, only to be faced with the certainty that somewhere, someday the bubble you’ve carefully constructed will burst and you will spend the rest of your life haunted that you didn’t do enough.

You do not live this life of mine.

There will be no compromising; no apologies. There will be no excuses, no desperate attempts to meet anyone halfway. There will be no explanations that I’m doing a good job, no efforts to convince you that I love my child.

Unless you are living my life today, unless you are the literal difference between my son’s life and his untimely death due to wandering, then you and I have nothing more to discuss.

I am not sorry for the steps I take to keep my son safe; I do not regret the locks, the stroller, the wheelchair, the gates, the alarms, the snug embraces.

I do these things so that I don’t have to one day face the ultimate regret: that I didn’t do enough.

So this is me, elbow deep in my truth. Nothing you can say about me, or write in the comment section of this or any other blog post I write will change that.

You do not live this life of mine.

So let it be known: I do not care what you think about the way I raise, protect, and love my wandering son with autism.

Now you’ll have to excuse me.

I have a child to catch.



Comments (73)

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*choir of angels singing* Jo..you have such a gift for writing. This is exactly where I'm at. Also? My child got out of the house a few days ago. I guess she didn't read how wandering is a myth.
1 reply · active 617 weeks ago
This is beautifully written and powerfully stated. My family is all too familiar with wandering in my uncle with Down Syndrome who also has autism. His DS is so obvious, no one cared to diagnose his autism until very late in life, and my grandparents dealt with loads of shit from people who knew nothing about what it was like to care for him every time he wound up lost and a search party was organized. My hat is off and heart is open to you.
1 reply · active 617 weeks ago
Very beautifully written. My son is now 19 and doesn't wander any more, but I do remember those days only too well. One terrifying afternoon while I was hanging up laundry, I heard the screech of breaks and a woman screamed, "Oh my God," over and over. My son, who had been playing in sand only moments before, had wandered into the road. He was unhurt, and when I arrived, just laughed and laughed and laughed. So, yeah, I hear you. XO
We too have been through the wandering stage. Our son never leaves the house, but he did run away from school a couple times. It makes my heart race to even think about it. I'm glad that it was a more isolated thing when he was young.
1 reply · active 617 weeks ago
Yes, yes, a thousand times yes. Thank you, Jo.
Love it Jo! Thank you for writing this!
Amen. We are heading to Europe soon. My son will be tethered either by pram or reins the entire time. Anyone got a problem with that? Come at me bro!
1 reply · active 617 weeks ago
Brenda Tobin's avatar

Brenda Tobin · 617 weeks ago

YES! JUST YES! You have hit the nail on the head a thousand times over in this blog. Thank you! I am dealing with the wandering & bolting now. It has about sent me over the edge some days. Thank you again!
Bravo!
I have NT kids, so maybe my experience is whatever... but I've been there. My now almost 11 year old son used to cause my heart and the hearts of others to stop with his tendency to 'escape' ...he learned how to escape his crib weeks after learning to walk...I'd find him sleeping under his bed or in a closet or cupboard. By 13 mons he knew how to turn on the water in the tub...by 14 months he knew how to unlock and leave our apartment...the number and types of alarms, locks, etc would never stop him. He would figure how to disable or get thru them. Wandering, eloping, escaping, running away are common normal kid things, some are deterred easily, others outgrow it quickly...and then there are those who take it to new levels for a longer duration. Autistic or not it is no less heartwrenching when a child escapes their safety area. <3
I didn't actually know that this was something that parents of autistic children had to worry about, but I can not imagine how terrifying it is. I breath a sigh of relief when my kids get out of that stage (my 2yo is in the middle of it right now), but it must be incredibly hard to deal with when the "stage" may not ever pass. And? People shouldn't ever pretend to know what parents are going through with their children.
Powerfully stated, and sadly, such a needed message. Very well written.
This is wonderful. Love, love, love!
Sheri Beary's avatar

Sheri Beary · 617 weeks ago

So powerfully written - THANK YOU!
Deborah Dennis's avatar

Deborah Dennis · 617 weeks ago

Thank you for your honesty. The only way we can change the way society views our kids, is to speak out. And after speaking out, screaming out, society still doesn't change, they'll have to get over it.
1 reply · active 617 weeks ago
Absolutely fabulous, Jo xxoo
AMEN!!!! I wrote a blog post of my own showing every lock, alarm, and barricade in my house. This is reality, whether these condescending jerks wish to realize it or not. This has been a classic example of those who need to zip it and step back when they haven't the foggiest notion of what they are talking about. I will never apologize for anything I do to keep MY son SAFE. It's a fact of life for us and it hasn't harmed him in anyway. In fact, it has done the exact opposite. It has helped to make him SAFE, SECURE, and fully aware of how LOVED he really is.
Wow, Jo. Just wow. This is amazingly powerful. Thank you for sharing this post. This really needed to be said.
Kelly Howell's avatar

Kelly Howell · 617 weeks ago

Wonderfully written. I wish I could say these things to those people that blamed me. I wish more than ever that this could make me forget what they wrote. But I know it's the autism community that I need to turn to and their support this past week showed me how wonderful people can be.
3 replies · active 617 weeks ago
Amazing article. I have a bolter and every day is a challenge. I never know if this will be the day that I am not quick enough to catch him. It is the stuff of nightmares.

Then there is having to contend with the ill informed judgement of others. Stuff them. They know nothing. And until they do, they should just shut up.

Thank you for this.
My Autistic 30 month old made it out the door and across the street to the high school parking lot. As I frantically ran in the wrong direction looking for him (towards the busy highway 4 blocks away, where my greatest nightmare lived), a neighbor saw my son walking and called the police. He was safe. I didn't sleep for 2 nights, imagining all of the "what-ifs".. To add to the indescribable terror, the police officer who responded called the emergency hotline for DCFS "abuse and neglect" cases. I was interviewed, my other children were interviewed (husband was at work; he wasn't interviewed). I'm still awaiting the results of the "investigation". I have no idea what will happen. I feel as if I have tripped an fallen down a rabbit hole. All the safety precautions, all the times I was able to thwart Kellan's prior attempts at escape.. And I failed 2 weeks ago. I cannot thank God enough for being so very lucky. He is ok. This time.
Lucile Hester's avatar

Lucile Hester · 617 weeks ago

Beautifully written - thank you.
All right, wandering is a myth? What have I missed lately?
I have seen too many kids end up in a trauma room, on their way to the OR, and then the PICU, to believe that wandering is a myth. And frankly, no matter how many locks, gates, guards and alarms, kids, especially those on the spectrum, or with other special needs, can spot that 2 sec window when they are able to "escape", and wander. I swear I sometimes think they have a Harry Potter invisibility cloak!

I have had patients escape from an exam room, with me and a parent right there. They get by the therapy dogs in the hallway, my staff at the front computer, and we generally (thank-you God) catch them as they head down the hallway.

Bless you parents who do everything you can think of to keep your children safe!
Rhonda-Marie 's avatar

Rhonda-Marie · 617 weeks ago

"You do not live this life of mine" .... Love love love :)
Loved this! I can totally relate!
This is fantastic! And True........... so very very true! I've had the same dirty looks, snide comments, and eye rolls thrown my way too. No one understands the TERROR we feel when we step outside the door of our homes. The focused attention to the point of draining exhaustion we have to have on our children at all times. The wishing we could just have *our* child walk next to us in the store or the park without the death grip on his/her arm or hand. I got a "why don't you cut the cord already" comment once from someone that never had to deal with wandering/bolting/running from their child. Our hyper vigilance doesn't make sense to some because they don't live our lives. Instead of the comments or rude looks I wish they would ask me! I will explain it too you... I will tell you that my son has very little fear and will run out into a busy street without blinking an eye, or that he will run out my front door and down the street without looking back....OR he will run straight into the ocean without the slightest fear. Do we have a harder life then other's do? Maybe... are we asking for pity about that... NO. Just some understanding and less judgmental comments from the peanut gallery.

Thank you for your words.... They are powerful and true. I hope many more read them.
Thank you for writing this! Brilliant stuff!
This is So true. I Love It!!! My daughter is 5 and she bolts almost every time she's outside.
Beautifully put. My guy just turned 7 and though it is better, it is still an issue. Our house doors are on chimes so I am alerted. I am always on alert when we are out! We also are sure to lock all our car doors because he loves to get in the car! In the past he has slipped out and we frantically looked only to find him happily "playing" in the car. I am a runner and fairly fast- this comes in handy! The constant vigilance can be tiring, but what else would I do? He is precious, he is hard, he is my gift from The Lord :)
Beautiful!! Absolutely beautifully written. My son is now starting to dart off when he gets upset. It's a very very scary and REAL thing. Keep up the great work keeping your son safe :) !
This is just perfectly written. There's nothing else I can even say. Just perfect.
Will be printing out and taking to my next IEP meeting. My sons safety has become an issue that they don't seem to take seriously. Thank you for writing what I feel. Yes...they do NOT live this life of mine!
1 reply · active 617 weeks ago
Some of my most heart stopping moments have been looking for one of my two children with ASD at certain stages of their lives. I think we blame ourselves as well and we need to stop the blame. No one is to blame, not the child, the parent, or the circumstances. It is what it is and there is only so much we can do. In the end, unless people walk in your shoes every day, they have no right to comment. I now try to see them as inconsequential. If you are ignorant and want to be educated, great, if you are ignorant, rude, and don't care then rack off hairy legs ;) .
This, this, this. Until you live having your child bolt in a split second, no one should be passing judgment. It is not their place. You can tell me how to better prepare my child with swim lessons--I have done so for five solid years. You can tell me to better watch him, lets see you do better. You can tell me all sorts of things but I stopped listening to those who don't have children, to those who don't speak for me. You just don't know until you've lived it.
3 replies · active 617 weeks ago
Good for you, good for your vigilance. There are so many ways for our children to get hurt out in the big, bad world.

My son is still an eloper, and he'll be 18 in July. The last time he took off, I called the police - because I'm worried about him getting hit by a car as he runs willy-nilly, ignoring traffic (which is a problem every single time he gets near the street).

The police tackled him, maced him, cuffed him, threw him in the back of the patrol car and took him to juvenile detention.

Since that time, he has somehow held his shit together enough to just threaten to leave. At 17, if arrested, he would go to an adult lockup - and nobody wants that.
You have represented perfectly your fierce love for your son. There is so much of this that rings perfectly true for me as well.
Hello,
I just wanted to say thank you so much for writing this! What most people don't realize is it was 4 kids who died last week. I get so sick of reading comments blaming the parent!!!! I hadn't know a OT the big blog blast but I ended up writing a blog post after the death of mikaela about my perspectives as an adult with autism who wanders. I also wrote about the mason alert. People don't realize wandering and bolting is not a behavior problem it is part of having autism! This is a time when those families need support not blame! Please check out the mason alert. You are very clearly a very loving mom. I love your blog and will be adding you to my blog role
1 reply · active 617 weeks ago
Thank you. Why do people accept that Alzheimer's and dementia patients are wanderers, put them in locked down facilities with alarms on their doors.... And locks on refrigerators or microwaves or even bathrooms...even strap them to their own beds... depending on whatever the individual's "thing" is... I mean, they run. They bolt. They go missing from even the most vigilant of facilities. They bite and swear and smear poo too. But, children missing some of the very same neural connections that are breaking down in adults with dementia because they haven't ever been formed... They are products of bad parenting. I say fuck stupid people who talk out of their butts about topics they know nothing about. Too many uninformed yet highly opinionated people out there to count. The Internet just gives them an easy platform, makes their voices louder, and gives them a false sense of righteousness when other idiots agree with them. Know your truth and shut out the din. There will always be idiots. But there will also always be people who know the truth as it applies to them. Do with that gift what you will.
I have pulled my daughter from far too many close calls,, roads, lakes, rivers, oceans. She'll find danger wherever she can. Despite me documenting almost every incident of her life, it's been a 4 year slog to even be listened to be a specialist team. Finally, this year we received her diagnosis. (PDD-NOS) It's so hurtful to have people judge 7's left right and centre for the measures we have to take to keep our children safe, we have a backpack with a leash that we take everywhere and the looks we get, the stepping back to whispers, the heavy tuts, though it's hard,... it's worth every bit as long as I get to see my child grow, so she is not taken before her time.
Here is the post I made in response to the Babble article that was questioning the validity of this issue. I eloped as a child and was only saved as a result of an individual noticing me and stopping their car. I was non-verbal, hyperactive, fearless, and difficult to control well before awareness of this dangerous issue came effective to light.

It is a dangerous cocktail of caution to ignore or downplay in serious nature. It has become a special interest of mine I have pursued in detail in the last year.
https://www.facebook.com/permalink.php?story_fbid...

Additionally, I recently made a list of 30 safe sites for people on the Autism Spectrum and People who Love them. There are many sites such as this one that would fit that criteria, and some on my list that I am having to reconsider, at this point specific to this issue that I hope will improve in the future.

Some of the obscure resources are likely helpful as they are from people who do not seek out to network with other people, that I have collected as unique viewpoints from off and on the spectrum. :)
http://katiemiaaghogday.blogspot.com/2013/05/30-s...
Oh by the way, Hi AutismDoggirl; small world isn't it. :) We were just discussing this issue on the Wrong Planet website, where I added AutismDoggirl to the list I made today! Parents need Autistic Allies too. :)
I don't have a child with autism (although I did have a child with CP who was totally immobile). So, I cannot speak from any experience whatsoever. But I have shopped with my small ones... And I can use my considerable imagination to add: A bigger, stronger child, who can run faster and open doors and gates and who has no idea about danger. I shudder. I'm sure the reality is far worse. My wholehearted love and support to you. Would it not be lovely if people could start helping and watching out for all children instead of blaming and trying to feel superior?
Both my daughter and son have autism and ADHD. My daughter hated being attached to me or the pushchair and just went all floppy and dangled on reins or a wrist tether. She hated holding my hand and would bite me. She was always running off and I lived in constant fear that one day she would run into the road or be abducted while she was out of my sight. Shopping became a nightmare of frantic racing up and down aisles. She thought it was great fun - a game of hide and seek. Our local playground was open and led directly onto a playing field. Many times she would bolt and leave me with the pushchair unable to run after her without leaving my baby. Many times I had no choice but to leave him with another mum - a stranger - to chase after her. In the end we stopped going. My nerves couldn't take it - and then I was berated for not taking her out. My son was not a bolter but was a wanderer. One evening (aged 4) he left after school club and walked home. It was only a 10 minute walk but he had to cross 3 roads. Staff just assumed he had been picked up. When I arrived to get him they thought his dad must have collected him. I phoned his dad, who was still at work, and then panic ensued. I cannot put into words the feeling that consumes you when you can't find your child. The club did change their procedures after that and children had to be signed for on collection and they had a door handle fitted high up so the children couldn't let themselves out. It could have been too little too late!
My children are now 23 and 25 and still live at home, with us supporting them emotionally and financially. We all survived but the stress over the years has been immense. People with NT kids, who never went through this, never had to deal with the emotional fallout of children who can't cope with poor social interaction with peers, whose children were in the most part compliant, who don't still have to intercede when things in their lives go wrong, certainly did not live and do not still live this life of mine!!!
This article made me weep. It brought back all those anxieties and made me so sad that even 20 years on people are still just as judgmental and insensitive as they were when my children were small. Walk a mile in my shoes!!
Thank you for this Jo. Your words were perfect. xo

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