On the Sad End to the Search for Mikaela Lynch

Kerima Çevik
theautismwars.blogspot.com

Last week the body of Mikaela Lynch, age 9, Autistic, was found in a nearby lake where she apparently drowned. I am sorry to say that when I saw the red flags of a nonspeaking missing child, a nearby body of water, and unfenced backyard leading to woods, I feared the worst while praying for the best.

I'm not going to comment on the article on Mikaela's death in Cafe Mom's The Stir because I don't wish to increase hits on the Examiner article, which vilified the parents without a clear grasp of what happened that day. We weren't there. We don't know what happened. We only know what is reported to us. I will wait for the police to finish their autopsy and investigation, and pass on my sincere condolences to Mikaela's family.

We have been engaged in teaching our son water survival rather than swimming since his school reported him missing and he was found by chance in February of 2010. He was found near a backyard pond, according to his principal's account of events on the phone. We will never know what happened that day.

But there is a much more critical issue here, a dangerous slope we as parent advocates can easily slide down in our fear that our children might be next, and that we might be scrutinized for parental negligence. Let us not fall into the trap of calling for a behavioral code for wandering, and imprisoning our children in the name of protecting them from harm. Instead it is critical that the billions of dollars being allotted to brain research include funding set aside to understand the causes of wandering, and search for solutions that don't imprison our children and try every parent who will spend the rest of their life second guessing the last day of a wandering autistic child's life for neglect in the court of public opinion.

In my own research on wandering, there were cases of drowning in which the victims were wearing tracking devices linked to police emergency centers. This issue was a matter of public outrage in Colorado in the cases of the drowning of Kristina Vlassenko and the wandering incident of Brandon Wells, who was fortunately found despite the failure of his tracking device. In addition, Brandon's mother was later brought up on charges for the device's failure to hold a battery charge.

It is saddest to me that we tend to forget that all children do deadly things daily. When I was growing up, parents were warned about keeping all children away from old refrigerators. Each year typical children fall in bodies of water and drown. They swim in areas of riptides and are carried away. Children who are capable of reading ignore warnings and fall through ice on frozen lakes. When other developmentally disabled children or typical children are the victims of horrible accidents, the parents are allowed to grieve and media coverage occurs in a humane fashion. Nor does anyone lay blame on the pathology of the children.

Two things have to end here. One, we have to see our children as people with degrees of impairments that need to be addressed and managed; NOT as medical nightmares who need to be behavioral controlled but as people who need accommodation and supports for such potentially catastrophic events. Accommodation must be made so that solutions account for autistic people running from abusive placements in both school and institutional settings.

I made the effort to write this in extreme pain because I don't want us to go down that path where we imprison our children in the name of protecting them. It is our job to empower our children and teach them to survive. It is the difference between surviving 15 hours in water by shouting "to infinity and beyond" and locking your child in a cage to keep the child "safe."

In 2012, I asked the Maryland Autism Commission to recommend survival swimming be part of the educational curricula for all Autistic children and adults because the numbers of first time wanderers with developmental disability who die by drowning is frighteningly high. Unfortunately the Commission wasn't able to include this in their final draft.

I have asked my Congresswoman to consider expanding the Maryland Silver Alert system to include missing Autistic children, who are not covered by the Amber Alert System. Please join me in this effort in your States as well.

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A version of this post was published at theautismwars.blogspot.com.

Puberty Resources: The Girls' Guide to Growing Up

We get frequent requests for puberty and sexuality resources and information. While in general, good frank resources are good frank resources -- witness the UU Our Whole Lives Lifespan Sexuality Education Curricula -- specific guides can be helpful too, such as The Girls' Guide to Growing Up.

This book takes girls through all the aspects of puberty: changing bodies, privacy, menstruation, masturbation, etc. It is also written with even more frankness than most puberty guides; I've never seen a photographic guide to understanding when it might be time to change a sanitary pad, for instance. And it reassures girls that while some people have crushes, others don't (since many autistic people are asexual, this casual reassurance during such a foundational time is important). It also tends to use "person" instead of "boy" when discussing sexual feelings, which reflects reality. The tone overall is very friendly and comforting.

It is written for a third grade reading level, with plenty of photographs and illustrations. This tone could be helpful for a girl who needs a more direct approach to understanding what the heck is happening to her feelings and her body (as I will admit I could have used), or a girl with developmental or intellectual disability. But I've also been told that the tone feels too young for girls who are used to reading at a teen level, which is something to consider if you are buying the book for someone else.

If you know of other puberty and sexuality resources that are appropriate for our community, or if you have an opinion on The Girls' Guide to Growing Up, please do leave a comment. -SR