Here's How It Can Happen

I follow many Autism community blogs, websites, organizations and facebook pages.  Needless to say, my newsfeed started filling up when the story first broke about Jayliel Batista.  Jayliel is a 5 year old that wandered away from a family member's  home on New Year's Eve.  He wasn't wearing a coat, nor did he have on any shoes.

A search party was sent out for him, the police were notified, and search dogs were summoned.  The entire community looked for him.  They were told he may be frightened and would run if he should be called by name.  They searched in nooks and crannies.  Bushes, brush areas, people's yards...and as each minute passed.....the light on Jayliel's story grew dimmer and dimmer.

They searched for 36 hours.  And they did find him, about a 1/4 mile from the relative's home.   But in fact Jayliel's light had gone out...and he was found dead 8 feet at the edge of a canal.

A canal.

Every statistic out there speaks to the fact that what kills the majority of Autistic kids....is drowning. Fountains, ponds, lakes, rivers, ditches....and now, canals.

My frustration immediately was with the people searching for him.  Why didn't they check the canal first?  Did they not think he could have gotten that far?  A scared human, dog, cat, etc. can run pretty far, pretty quickly.  Why do we not have enough awareness that the water is the killer?  How have we missed this, again?

But I had to step back from that.  Was I in the search party?  No, I was not.  So I don't know how they set up the grid.  I have no clue how the search party was deployed.  Maybe they did search that area.  I just simply don't know.  And because I don't know....I have no right to sit in judgement of anyone.

But here's what has bugged me the most.  And quite frankly, always bugs me when one of these stories comes to light.   And for some perspective, it's about every week or 2 that my feed is filled with missing...soon to be found drowned kids.  It's getting to be so disheartening.  But I digress.

What's really got me honked is how much blame is being tossed on the parents...

"He was 5.  This is parents not paying attention. They were probably on their cell phone."

" I don't let my daughter out of my sight.  EVER!  How could these parents just not know?  They are negligent!"

" Did they not have a safety plan?  They were at someone else's house.  They should have had a plan.  I'm sorry, this is a poor parenting issue."

....and on and on the trolls go.

And these are parents of autistic kids.  These are people that live the same world that Jayliel's parents live in on a daily basis.  These people are supposed to be the "support system."

Pfffft

Just like I know nothing about that search party plan.  No one knows what happened at the relative's house that night.  Maybe Mom had JUST checked on him and she was living in that 5 minutes of comfort that all was well.  It's only a short time, because you know....you are going to have to check on him again in 5 minutes.   Maybe he was asleep, and she believed he still was.  My point is...my God, none of us were there.  And none of us has the right to stand in judgement.

I'm going to share my stories about Nea's wandering.  I'm not going to lie, I'm a bit nervous about sharing because it makes me feel like such a shitty parent.  And yes, I am aware that every parent has "that moment" that has happened to them before.  But there is a LOT of persecution in the Autism community regarding this issue.

One of those situations happened just today.  Today.  Today after a 5 year old boy was found dead.

Here's how it can happen.....

Nea was 15 months  and we were playing in the living room.  It was a beautiful spring day and our big door was open, with the screen door letting in the nice warm air.  I yelled to her Papa, "I'm running upstairs a sec to go to the bathroom."  He responded, "Okay!"

And so, as most things happen....I went to the bathroom, but then ended up folding some towels while I was there.  I heard a knock at the door and headed downstairs to see who it could be.  I heard Jon in the kitchen and starting to walk to the front door.

And there was a complete stranger standing on the porch holding our daughter.

What.  The.  HELL!?!?!

She smiled a big sweet smile and reached her arms out to me..."Mama! Hi!"

When I went upstairs...Papa assumed that I was taking Nea with me.  I assumed that he would start keeping an eye on her.  Neither one of us was very clear.

Thankfully that day a kind neighbor had seen us playing outside earlier in the day and knew where she lived.  He found her 1/2 down the block, on the other side of the street.

15 months....1/2 block, crossed the street.  I couldn't breathe for a few minutes.

When Nea was 3 I caught her heading out the side door.  I screamed so loud that she sat on the floor where she was and started to cry.  "I outside."

That prompted me to order The Big Red Safety Box.  A free kit that includes "Stop signs" to put on the doors, a family emergency pack, a form for first responders (so time is not wasted getting a ton of information about the child), etc.  We put more high locks on our doors after that day too.  It took me awhile to breathe after that.

Today we were late for church.  As we pulled into the parking lot, Nea squealed..."Look Mama!  Look at the water!!"
There's a pond right in front of our church.  It rises and falls like any body of water based on our precipitation.  Today, it was looking especially beautiful as it had a fresh, sparkly sheet of ice on it.

"Ohh!  Yes, that's pretty!"

We rushed into church.  Because we were so late, the children were filing out of church and headed to their education classrooms.  She LOVES her "church school" and filed right in line with the kiddos.  She practically ran to the back of the building!  I watched her take a left to head to her classroom.  I grabbed  a cup of coffee and slipped into a seat for the rest of the service.

After church was over, I headed to Nea's classroom.  The kids were still working and the adults were moving around the table helping them.  I didn't want to interrupt, so I peeked in the window.  I didn't see Nea, so I popped my head in....

"Is she in the bathroom?"

The teacher looked at me with shock on her face...."She's not in here...she's not been back here at all."

Oh my God!  Oh my God!!  She's had an entire 40 minutes!!  She's 40 minutes ahead of me.

THE POND!!!!!!!

I dropped my stuff and headed for the door.

Oh NO! NO! NO!

It's so cold.

The ice is not that thick.....

Why didn't I take her in the room?

Do I see her coat?  Was it still on her?  Did she hand it to me?

It's so cold!

The water...the beautiful water...

My God...please let this be a nightmare!!

10 seconds.  It took 10 seconds for those phrases to pass through my head.

The nursery is on the way out the door, and on a a gut, I popped my head in there.

There she was, playing in the corner.

I leaned against the wall to catch my breath and try to contain myself.   They told me she came in there fairly early at the start of the hour.  The girls in there know her, they know she gets overwhelmed with sounds/sights sometimes and they assumed that's what happened.  They were happy to let her hang out with them.  They assumed (and rightly so) that I sent her that direction.
Everyone was supportive and apologetic, but there was no need to be.  I should have handed her off myself....adult to adult.

Thankfully, I only had to learn a tough lesson today.  I didn't have to start searching for my 5 year old in a semi-frozen pond.

It can happen.  Over half of children with Autism are prone to wandering.  A lack of awareness, not a sense of danger...etc...the risk is just so high.

So what do we do as a community?  There's a blog I follow that is called Autism Daddy.  He's a great writer who has done a perfect job of outlining what needs to happen-there's no need for me reinvent the wheel.  I think he has excellent suggestions.  Please take a moment to read them.

If you are in the Autism community...please, let's not tear each other down and judge during these horrific instances.

If you are not in the Autism community...please, help us.  Helps us raise awareness in your community, educate yourself, understand the issue.

It can happen.....

Pulled the drain on swim class

I took Nea out of swim class.  Yup, I took her out.  It was not meeting her needs and she needs something different.

Now before anyone panics, I am fully aware that she NEEDS to learn to swim for her own safety.  Nea's attraction to water is very strong, and her impulse control is very weak.  She will jump in any body of water, anytime, anywhere.

As I've said before, Nea's been in a swim class since she was 6 months old.  She was never the baby that cried when in the water.  She was the baby that splashed and kicked gleefully.  I learned very quickly that I had to be careful with her around the pool because her impulse control was so poor.

Nea was usually out of swim during the summer months because we were doing swim on our own.  When fall came after she had been diagnosed, I wondered about a special needs swim class.  I spoke to two aquatic directors about a regular class or a special needs one and we decided that the special needs one would suit her best.  

That was a year ago, and it's been bumpy.  

Swim instructors at the place I take her change frequently.  So there hasn't been a great opportunity for her to bond with any single person.  That really is too bad, because the more she is "hooked in" with you, the more she will do for you.  The other issue that kept coming up was that these instructors.....as sweet and as nice as they are, would not listen to me when it came to helping to teach her.  I knew they did not have specific training in Autism and I tried to help them understand what HER motivators were.  I explained time and time again that putting her in the baby pool does not work for her because she simply just walks around.   Really, I grew sick of having that conversation.

So the combination of inconsistency, lack of knowledge about her Autism and not listening to my suggestions had me looking for something else.   In reality, her current state of swimming skills has come from me and our time in the pool together.  I've taught her how to hold her breath and the beginning of how to move underwater.  When I let the teachers know what she's done (especially when trying to quickly fill in a new one) the information is met with nodding and a courteous smile.  There's never a "okay, great! Nea, lets see what you do underwater!"  They each like the process they know and want Nea to follow that same process.  In the beginning, I was open to that, believing that learning the process presented was what she needed to do to learn to swim.  But what I found is that her frustration levels only increased.  There has not been a "lets go with where she's at today."  Every day is different with Autism.   And what worked last week, probably doesn't work today.  But that notion always fell on deaf ears.

Advocating for your child sounds so cavalier, until it starts to get in that messy world of hurting feelings or making someone angry.   The place we are at now has great programming, but it just doesn't work for Nea any longer.   What I really want is a robust program like this that is focused on kids with Autism.  Right now, everything is a retro-fit and it's just not working.  

I have contacted the Certified Therapeutic Recreation Director at the new place to talk about private swim lessons and options available for Nea.  The other thing I'm so impressed with is that they will make accommodations in ANY of their programs for special needs kids with a couple weeks notice.  Putting Nea in a tumbling class or a dance class has always been of high interest to me.  Also, this new place is connected with Special Olympics and I find that very promising.

I don't know all the answers or details yet.  In the meantime, Nea will spend weekly swim time with Mama and we will work on swim kicks, arm circles as well as movement under water.

The Warrior Swimmer

Swim class today = a little nutty.

Nea's instructor is very patient with her and knows her moods pretty well.  Today we had to be in the big pool, which may have made everything seem very different to Nea.  She played along with the instructors usual things like "big arm circles" and "kick, kick, kick", but after 15 minutes she was ready to spread her wings.  

Or flippers.  Whatever.

My little Aries warrior is fiercely independent.  Soon into swim time Nea started yelling "NO!" every time the instructor tried to do something with her.  No crying, no whining....just a simple "NO!"  The instructor gets big props from me to try and figure out exactly what the issue was.   And when she did, she worked with the issue perfectly. 

Nea's issue is that she wanted to do it by herself.  Because they were in the big pool today, Nea was wearing a little floatie pillow around her waist.  She figured out she couldn't touch bottom soon enough, and she also figured out that she didn't go under either.  She was thrilled.  

She would put her feet up against the wall, push off saying, "3, 2 , 1 blastoff!" and back she would go!

Once she got out there, you could see the look on her face...... "uh, oh" and she reached out for the instructor.  I was happy with the instructor's response, "Hey, you got out there....you come back.  Swim back."

Clearly Nea was in no position to argue and she started kicking and doing "arm circles" to get herself back to the wall.  The amount of energy she had to use......

And then back to the wall for a rest.  

Don't think for one minute that Nea was in any danger.  The instructor was very close to her and could have grabbed her in a nano-second.  I was confident she was safe.  But what I appreciated the most, is that she was pushed out of her comfort zone.  And I also appreciated the little "cause and effect" lesson.   I am a firm believer that the worst thing that you can do for my girl is coddle her and let her off the hook because of a disability.  I'm not saying that she can do every single thing set in front of her because I know there will be stumbles.  But I've said from the very beginning of this journey that the only limitations Nea has are the ones we (parents, friends, family, society) place on her.  In her mind, she can do everything.  I'd like to keep that drive and that passion alive in her.  I think it will take her to places that none of us have dreamed.  

Okay, I lie.  I've dreamed.   I saw a little girl this week who was Nea's age.  The amount of talking and communicating she did floored me.  Nea's delays stood out loud and clear.  I'm not comparing, I'm not saying Nea is less in any way.  But I'm also human and I know that the world can be cruel.  I would like it if she didn't have to have her Autism to deal with on a daily basis.  I would like it if she could be embraced for just being her and not have to have special things like EIP's and therapists and communication adjuncts.  I'm human, and I want for my kid the same thing every other parent does.  

But that is not our road, and that is not our journey.  And really, there are all sorts of blessings we have been receiving that I'm not sure I would have understood otherwise.   (that's probably a different post!)

Wow...where did that come from?  Okay, back to swim class....

Back and forth, back and for the rest of the swim time.  The only time the smile was on her face, was when she was "swimming" by herself with the encouragement of her instructor.  Would I like for her to hang on to a swim bar and float on her back, kicking appropriately?  Do I think that she should practice more powerful swim motions?  Yes to both.  But today was not that day, and the instructor knew that.  And that's why she gets major props from me. 

Doing the "blastoff" and swimming back to the wall seemed to give her a sense of accomplishment.  Oh of course we know that she still has to learn many fundamentals.  But dog-paddling is the first step in that direction.

It's been an up and down week with therapies.  We are blessed with therapists and instructors who have invested time and energy into Nea's success.  I can never say thank you enough!!

But THANK YOU!!!!!!

Water

Nea loves the water.  It's one of the first things we noticed about her when she was a baby.  Bathing in the tub was tons of fun and she would kick and squeal in the bath.  She enjoyed it so much, her Poppa and I thought it might be a good idea to enroll her in a swim class.

We went to our local YMCA for a Mommy & Me swim class when she was 6 months old.   She LOVED it.  Nothing about the water scared her, she was never hesitant, and she happily played in the water for as long as we would let her.  Of course when summer came, we spent most days in the local pools.  But we always returned to swim class at the Y in the Fall and Spring.

In my research I've learned that kids who are on the spectrum are very attracted to water.  Being surrounded by water provides a natural compression and feels good.  Some autistic kids cringe at touch, and some of them crave deep pressure....both varying extremes,  but each kid can find comfort in the water.  The water helps with balance, with proprioception and is a wonderful tool for sensory integration.

There's no reason not to build on this love of water. In fact, there's a very real reason.  We need  to be sure she can maneuver well in the water.

Nea @ 15 months

The number one cause of death in children with Autism is drowning.  Why?  The answer is simple.....

As I said, they are naturally drawn to it because it helps sensory deficits that many of these children suffer from.  Any type of water is fine.  There have been children that have drowned in water fountains as well as lakes, swimming pools and the like.  This is a tragedy of epic proportions and I hope no parent ever has to endure it.

Also remember that many of these kids are prone to wandering.  It doesn't take but a second for something to catch Nea's fancy and for her to wander off.  She doesn't have the same built in "stick close to Mom"  that most kids her age have.  Of course 16 month olds tend to wander too, but should move to a different developmental stage by the time they are 2 or so.  The wandering piece is such an issue that there are therapy dogs who work with Autistic children and are also taught how to track for them.  So not only do these dogs help to teach social skills they also will go and find little Suzy if she should venture away.  Some times the kiddos are tethered to the dog and the dog is given a parameter of a "travel zone."  Essentially the dog knows, "we stick close to the grown-up human" and doesn't allow the child to wander away.

It's important to know too that most Autistic kids do not have a sense of "danger" when it comes to the water.  There is no hesitation, there is no concern there is only "getting in" that seems to be hardwired.
I've seen this really begin to manifest in Nea as she gets older.  Some would call her a "dare-devil" but I know what she's doing and she's just trying to meet some sensory needs.  Her face has been under water for weeks now.  Sometimes I have to pull her up when she submerges herself because I'm fearful that she "forgets" she doesn't have gills.  She recently has started diving head first into the pool.

Nea @ 26 months

We finally joined our local YMCA this past September.  One of the branches has a great therapy and recreation pool that fits Nea's needs perfectly.  The girl is lucky that she has a Mama that feels confident in the water.  Swimming lessons were a "you must do it, no questions, this is not up for debate" things that my Mom made us do.  We grew up in a small town that was on a river.  Being a confident swimmer was high on her priority list.  I've been very grateful over the years for my swimming background.

The YMCA has great swim classes for all ages starting at 6 months.  In fact they have great programming for kids hands down and I highly recommend them!  Nea was in a swim class in the Spring, but after about 2 lessons (and lifeguard heart attacks) I pulled her out of class.  I couldn't get a handle on her impulse to be in the water and her inability to handle some of the instructor interactions.  It was the summer when she was diagnosed with Autism and sensory issues which made everything become very clear.

So we've been working most of the late summer and early fall in the pool together every weekend.  She has made a lot of progress and I try to simulate some of the things I know she will encounter in a class (she is enrolled for the upcoming quarter).  Repetition is key for her and she'll be better at class routines than she was before.   It seems that signing works best to communicate with her when she's excited.  It's like the visual cue gets in, even if the verbal one doesn't.  So I've been signing at the pool many things like "wait", "sit", "go", etc.  I think it will help.

We are fortunate to have a YMCA in our area that offers classes specifically for special needs kids.  They will be working on waiting for her turn, communicating with the instructor and listening to direction.  This is great prep for school coming up in 6 months!  They will be able to work on impulse control as well because she'll have some individualized attention.  So she'll get her social needs as well as some therapy needs met all at the same time.

Nea @ 2 1/2 years

We are looking forward to swim lessons in this new class!