Posts Tagged "support"

Why Didn’t Mikaela Lynch Get an Amber Alert?

Posted by on Jun 6, 2013 | 0 comments

Why Didn’t Mikaela Lynch Get an Amber Alert?

I also blog over at, and this was my other post as part of “An Outpouring of Love for The Mikaela Lynch Family.” To read more entries from other writers, please visit this site. You can see the original post here. Sadly, several more autistic children have drowned since I wrote this article not two weeks ago.


There is a question many are asking in the wake of Mikaela Lynch‘s disappearance in Clearwater, CA last week. Actually, there are a lot of questions being asked by a lot of people, but there is one that I, and many in the autism community, would really like an answer to.

Why was there no Amber Alert for this missing nine-year-old girl?

It’s important to understand that not all missing children get an Amber Alert issued for them. In order to “qualify,” missing children must fit certain criteria. Primarily, the family must be able to prove the child was abducted, and preferably give a description of the abductor and/or their vehicle.

A missing autistic child does not fit the criteria for an Amber Alert, yet the dangers are just as real and just as imminent as for one who has been abducted.

Over half of all autistic children are “runners”: children who, given the chance or the right circumstances, will simply go. Take off. Run. Sometimes there is a destination, oftentimes there is not. My child runs when he doesn’t want to leave somewhere or when he’s off in “his world,” as we call it. He gives us very few clues as to where and when it might happen, so we are always wary. It doesn’t happen very often with him, but many autistic children are continuous flight risks, meaning their families are on high alert at all times, day and night. Their houses are fortresses of locks and gates and barriers and alarms.

Another curious thing about autistic children? They’re fast. Faster than you’d ever think, and highly trained in the arts of evasion. If an autistic child wants to run and you’re not ready for it, there’s not a whole lot you can do other than hope you can run faster. Or hope there’s someone on the other end who can run interference. A lot depends on hope.

Mikaela was nonverbal. She could not speak, nor really understand the world around her past the cognizance level of a very young toddler. Mikaela was also not toilet trained. That’s not unusual for children on certain parts of the autism spectrum, nor is it a surprise to anyone who has an autistic family member or knowledge of autism. Autism parents talk about speech competence and toilet habits in the same breath. It’s just another part of life. And no, it doesn’t matter if she was or was not able to use the toilet herself, but it speaks to her vulnerability. It’s not newsworthy in any kind of sensational way.

Autistic children are barraged with sensory input, and are equally drawn to things that stand out to them. Mikaela, like many children, loved water. Given the chance, she went to the water. Mikaela had sensory issues with her clothing – typical among individuals on the spectrum – and liked to shed it when she was hot. Within minutes of leaving her home, she was naked. A naked nine-year-old girl, running down the street, headed for water.

I cannot imagine putting a child in a more vulnerable situation.

Knowing these things about Mikaela, it becomes a little easier to see why she may have taken off in such a hurried manner. How often do parents find themselves chasing toddlers who have run off after a butterfly or a car or a cloud? Who strip naked at the drop of a hat? Small children are amazed with the world, and they want to embrace it. Individuals with autism experience the world much in the same way. To them, everything is bigger and louder and brighter and more extreme (this is an excellent video that attempts to replicate how an autistic person experiences their environment).

Autistic children with a high-risk of eloping (running) can be fitted with a tracking anklet or GPS tracking device in their school bag (there are bracelets and watches, too, but those can be torn off by an extremely sensitive individual). There is an endless array of identification items for autistic children, everything from temporary tattoos to shoe ID tags. We’ve even resorted to writing our phone number on Jack’s upper arm where he can’t rub it off.

The majority of us in the autism community don’t need to ask what security measures Mikaela’s parents had in place to keep her  contained and out of harm’s way. We can safely assume, knowing her abilities and cognizance level, that they had multiple precautions in place: locks, gates, constant supervision, etc. As will happen in the best of circumstances, life intervened. An unexpected chain of events led to Makaela being unsupervised for a moment. A moment she seized. A moment her family will never forget.

There is no one to blame for Mikaela taking her chance to run, nobody to fault. There is simply no way to keep a nine-year-old child under total surveillance without locking them away in a room. Things happen, life happens, tragedy happens.

It’s what happens next that’s important. Mikaela’s family was just minutes behind her, and called the police quickly. Hundreds of law enforcement and concerned citizens joined in the search. But because Mikaela was not abducted, there was no Amber Alert.

Perhaps they make a good point in narrowing the field of children to abductees, so that people don’t get desensitized to the alerts. The good they do, though, cann0t be denied. Amber Alerts go out over the radio, the television, Twitter feeds, text messages, email, up on SigAlert signs on highways, and more. Information about the missing child is spread far and wide within a very short span of time, and it has been proven to work, time and again.

Autistic children deserve that same attention. Mikaela was, sadly, not the first autistic child lost to drowning this year. Or even this month. She is, in fact, one of three children who have drowned in the last week alone.

Drowning is the leading cause of death for autistic children under the age of 14, and not by a small margin, either. 91%.

I can’t help but think that if an Amber Alert had been issued for Mikaela, perhaps someone may have taken a closer look at the child in the street. Or joined in the search. Or come forward with information they didn’t realize was relevant.

We can’t beat ourselves up for what might have been, but we can change the future for autistic children. If we can’t give them an Amber Alert, perhaps we need a new alert. One specifically for vulnerable autistic individuals. The family of Amber Hagerman, another nine-year-old who went missing, paved the way for the Amber Alert. As a result, countless children are alive today. Our children deserve the same attention, the same urgency, the same rapid dissemination of information.

We need an Autism Alert, and we need it now. We can’t spare any more of our very special babies.


To learn more about what you can do to help prevent wandering incidents and deaths within the autism community, please visit The AWAARE Collaboration.


This post is part of “An Outpouring of Love for The Mikaela Lynch Family.” To read other entries, please visit this site.

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The Missing Pieces

Posted by on May 20, 2013 | 0 comments

The Missing Pieces

There are missing pieces in the autism community today. Beautiful, tragic pieces named Mikaela, Owen and Drew.

So much has been said and written about Mikaela, yet there is so much more that needs to be said. To be screamed. To be cried out into the night.

Our babies are not safe.

We do what we can. We install extra locks, we put up barricades, we install alarms. We put up signs and rub temporary tattoos on little arms and put ID tags on shoes. We tell everyone entrusted with their care to be aware, be cautious, be vigilant.

But we know, at the end of the day, that our children cannot be locked away in a safe room forever. They cannot be grasped by the wrist or strapped into their seats at all times.

Our children, like all children, need to experience the world first-hand. They can’t do that from behind bars.

To do this, we have to trust in so many things. We have to trust that the people watching them will not look away. We have to trust that the child remembers – even a tiny bit – about safety. We have to trust in the unknown.

We also have to give ourselves a break. Parenting and giving care to an autistic individual can be exhausting and exhilarating. It can eat away at you in the same moment it’s filling you with the most joy. It can raise you up, and beat you down.

And sometimes things happen.

Mikaela Lynch’s family will never forget the moment she disappeared. Nobody made a mistake, nobody dropped the ball. Mikaela simply found a weak spot in her web of safety and took her chance to run free.

Like children will, she headed for water. Like many autistic children, she simply didn’t understand the dangers. The danger of a nine-year-old girl out in the world, unclothed, on her own. The danger of water when you cannot swim.

Children will always find a way around the borders and fences we construct for them. It’s our job to provide guidance and limits, it’s theirs to bust through them. It’s a part of learning and growing. So what happens when that curious child never grows out of the desire to run? What do we do when the guidance and limits fail? Because sometimes, they will fail. We are only human.

Abducted children get an Amber Alert, a barrage of information that disseminates quickly via television, radio, emails, texts, lottery tickets, Twitter, Facebook, SigAlert signs over highways, and more. There is no time to lose when a child is abducted, so the system acts as quickly as possible.

While I understand that sending out too many Amber Alerts has the potential to desensitize the public, there needs to be an equivalent alert for autistic children. Wandering, running, bolting autistic children are at risk every bit as much as if they were abducted. There are just too many variables when it comes to a child who may not even understand the concept of danger and safety.

I can’t say that the sad stories would have ended differently if there had been an alert. But the success of the Amber Alert speaks for itself. Anything is worth doing if it saves just one life.

We talk a lot about autism awareness, and this is what it comes down to. Let the public be aware. Aware of what a child with autism will do. Aware of the inherent dangers. Aware enough to step in and help.

They can’t, unless we tell them. Alert them.

We simply can’t keep losing our children like this. Not when something so simple may have saved them.

I want to change the system. For my child, for your child, for Mikaela. And Owen. And Drew.


To learn more about what you can do to help prevent wandering incidents and deaths within the autism community, please visit The AWAARE Collaboration.

run to the water


This post is a part of “An Outpouring of Love for The Mikaela Lynch Family.” To read other entries, please visit this site.

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On the Defense

Posted by on Dec 16, 2012 | 3 comments

On the Defense

I’ve  been on a kind of hiatus for a while now, while I was pregnant and had my fourth child.  A fourth boy. I’ve been ready to come back for a few weeks, but got caught up in the holidays and boy #3’s birthday and more holidays and life. I have stories for you, tales of Jack and his new brother, Jack and his fascination with horrible weather events and historical vehicular disasters (both air- and sea-borne), Jack and his new love of making gifts for everyone. Stories about how we need to find an ABA or someone who can help me now that Jack’s older, anecdotes about how Jack is doing in school.

Life has, as is its wont, interceded in my plans.

On Friday, twenty children died.  Twenty mamas lost their babies. Twenty families were wrenched apart at the very time of year we, regardless of religion, tend to gather our loved ones closest. Those charged with keeping them safe died as well, in the course of doing that very job. There are older mamas missing babies tonight, too.

Why should this affect me, other than the fact that two of my children are the same age as those who were lost? Other than the obvious devastation one feels when something horrifying transpires? Other than the unbearable sadness at the loss of innocents? One word.


There have been rumours and speculation that the individual who destroyed twenty-seven lives is on the spectrum. Nothing concrete, but enough for the mainstream and social media to grasp in their hot little feeds and run with. I have seen comments on my friends’ posts about how “the shooter has autism and that’s why”. I watched Piers Morgan, on CNN, say that people with Asperger’s are “missing a piece of their brain” and can’t feel sympathy.  I have felt the bile rising in my throat for three days.

Everything I’ve worked for with my son is teetering on a fence now. This situation could go either way. People will come to their senses and understand that ASD is not the cause of a massacre, or they won’t, and I fear for what happens then.  I’m girding myself, because people have notoriously and stubbornly, as evidenced by our last election, refused to be sensible.

Why should this bother me? My child doesn’t have rage issues. My child would never do this. My child isn’t in danger.

I’m sure there are many parents out there tonight who thought the same things and were wrong.

I don’t know what the future holds for my child, or how his ASD is going to affect him in five or ten or twenty years.  I can only hope that with early intervention and constant, loving support, he’ll be a contributing member of society. A happy person with nothing more on his plate than he can handle, and the sense to reach out for help when he can’t.

What I do know is that all of a sudden, instead of telling people that my son has autism with a sense of pride (because I am damned proud of my son), I am defensive.  I feel the need to explain.  He’s high functioning.  He’s really empathetic and loving. He’s not that person.

I don’t want to be defensive about my son, and I don’t want him to ever feel defensive about himself.  Especially not because some other person who may or may not be on the spectrum had more than he could handle and made some seriously bad decisions. I want him to be as proud of himself as I am, always.

Someday I will tell him about the babies who were lost, and why.  And we will talk about it, and we will probably not be able to understand, ever. And I will continue to tell him that he is loved and supported, even if he’s angry.  Even if he’s angry with me.

Mental health support is vital. The village cannot survive without it. I’m doing my part.


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Vindication… and Obligation

Posted by on May 25, 2012 | 1 comment

Vindication… and Obligation

It’s over.  Our long journey for a Canadian autism diagnosis has ended, and we are victorious.

So why am I so tired?

We went to our family diagnosis and funding meeting this week, girding ourselves for any outcome.  I wasn’t hiding my nerves well, so the wonderful doctor let us off the hook immediately.  Jack is on the spectrum, he has ASD.  We knew that, but there were no guarantees the team would agree.  Thankfully, they did, and now Jack is eligible for all the support that Canada and the British Columbian government have to offer.*

After she presented the official diagnosis, we met with a case worker who explained the funding process, and where to go now.  Unlike in California, where either the school district or the regional centers handled coordination of services, we will make most of the decisions ourselves.  It’s a bit confusing, but I’m glad we have a lot of experience in the autism world to guide us.

We sat in the car afterward, letting it all sink in.  I felt relief, I felt happiness… and I felt a weight bearing down on me.  My husband and I looked at each other.  We were both thinking the same thing.

Jack is special.  Jack has always gotten exactly what he’s needed, and then some.  But other children are special, too.  Our monumental task is over, but our – my – biggest job is just beginning.

Since Jack was diagnosed, before even, he has had the full support of everyone charged with his care.  We call him the “poster child for early intervention”, and it really is quite true.  Every step of the way, he’s had exactly the therapy he’s needed, the support he’s required, and the attention he’s deserved.  Here in BC, where his school has not yet received a penny for his support during the year and a half we’ve waited for his diagnosis, Jack has had a full-time special education assistant (SEA).**  Even though we have occasionally had to wait, Jack still prevails in the end.

I know many, many families in the autism community, and their stories are all different.  There are children who are lower functioning, there are children who are high functioning.  There are children with asperger’s, and children with PDD.  The spectrum is wide, and so are the services they’re receiving.  I would love to say every child is getting exactly what they need, but that simply isn’t true.

I know children who are not supported in school, and children who have had to leave school because of it.  I know children who need speech therapy or occupational therapy or sensory integration therapy, but linger on waitlists or are simply denied due to lack of funding.  I know children who have waited years for an accurate diagnosis, without which they cannot even get on those waitlists.

I won’t say we’ve had an embarrassment of riches when it comes to Jack’s therapies, interventions and supports, as he’s needed and deserved every one.  But that feeling lingers when I speak with parents so desperate for even a fraction of what we’ve had.  It pulls at my heart and puts a fire in my gut.

The weight I feel is obligation.  I cannot allow my fight to end with Jack.  He is my child and it’s my duty to advocate for him, but someone needs to stand up and speak for those who are not as fortunate, for whatever reason.  Autism is many things: daunting, confusing, challenging, and oftentimes inspiring.  What autism need never be, though, is a tragedy.  Every single child and individual on the spectrum deserves the chance to be the best they can possibly be, through therapies, interventions, supports, or whatever it takes. Every family touched by autism deserves to know they’re not alone on their journey.

Jack and I have completed this leg in our marathon, and we have every intention of winning the whole thing.  We also intend to take as many with us as we are able.  We can, and we will.

Swinging into the future...


“You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, ‘I have lived through this horror. I can take the next thing that comes along.’ You must do the thing you think you cannot do.”
Eleanor Roosevelt,


*Which isn’t a whole lot, honestly, but that’s another topic for another post.

**I was quite pleased to take in his diagnosis paperwork yesterday, which will now entitle his school to $18,000 a year specifically for his support.


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A Follow-Up…

Posted by on Mar 13, 2012 | 8 comments

A Follow-Up…

I’ve had a lot of responses to  yesterday’s post about Jack’s “new” diagnosis, and I’ve been thinking about what it is that’s bothering me the most.  A comment this morning hit it on the head:

“It sounds like your son has adapted to may things and so those who tested him determined his diagnosed could be ‘updated’. I think the autistic traits remain, the kiddos just learn to blend in to what is expected of them socially, etc.”

I read this and it struck me.  I’m afraid, because, in my mind, Jack hasn’t evolved out of autism.  I believe he’s every bit as autistic as the day he was diagnosed, he’s just older.

Jack is a brilliant product of Early Intervention, which means we threw all kinds of therapies at him as quickly as possible.  And you know what?  They worked.  But he still has autism, and that means several things.

It means that while he keeps up with his peers in school in terms of schoolwork, he simply cannot function in a school setting without constant supervision (he has a full-time SEA).  His teacher is out for the rest of the school year due to surgery, and I fully expect Jack to backslide until he gets used to the change.

Jack is easily overwhelmed by stimuli, and we have to plan our lives around that.  We rarely do things after school, as he needs that time to decompress from his day.  There are many places we cannot go, because of various things that bother/irritate/terrify him (like the buzzers at the hockey rink adjacent to the indoor playground).

He is hyper verbal, to the point that he thinks every conversation is directed at him, and if he has something to say, he will do anything, including screaming at the top of his lungs, until he gets the floor. We’ve recently realized that giving him simple math problems will buy us enough time to finish our quick discussion about what to get at the store.

Jack has to be constantly engaged at home or he gets restless.  This can mean anything from doing laps of the house to throwing his brothers down the stairs for sport.  His aggression has increased with his age, and in a house full of boys, that’s a scary prospect.

Jack does not understand social boundaries. He will hug and touch complete strangers, and not grasp why it’s wrong.  This particular behavior really scares me.

I honestly don’t believe Jack is “out of autism”.  I think he’s smarter than the ADOS.  I think he had a “good” day for his assessment.  I can tell you if they had assessed him based on his behavior on the way home, there would have been no question.

I identify with autism because I am an autism mom.  Yes, my child is high functioning, but he still has autism.  Every day brings a new challenge, and every day is exhausting. Jack and I both need the services he’s getting, and then some.  I’ve been waiting patiently for a year and a half to re-start his home-based ABA therapy, and the prospect of never getting it wrenches my stomach.

I realize now I’m clinging to the autism label as a lifeline, because that’s what it is.  I know my child responds to therapies, that part is obvious.  The prospect of facing a future without support, though, terrifies me.

I feel exactly the same way I did when Jack was initially diagnosed, except now there’s an additional layer of panic. I cannot let autism be taken away from us.  I just can’t.

A delicate balance.

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