Tuesday, March 13, 2012

The Scariest Words An Autism Parent Never Wants To Hear

Ask any parent what the scariest words they can imagine coming from their spouse's mouth that pertain to their child and one of the answers is likely to be "I can't find _____" (insert child's name).  This is especially true of you're a parent of an autistic child.  I had the unfortunate experience to hear this the night before last.

Let me start from the beginning.

Sunday morning started off well. My father in law was in town and wanted to take us all out to do things around town.  My husband let me sleep in while he got up with the boys, and even went to go get doughnuts.  It was looking to be a pleasant day.

We got into town and settled on eating downtown.  The boys were less than thrilled and Beans especially didn't care for the venue change.  When I say venue change, I mean not fast food.  :)  Bubby could not handle that there was no plan to speak of, and was instructed that he was to let others make the plans for once, by Grandpa.  He always gets to do what he wants, and it was someone else's turn. We got through lunch with Beans picking at his food the way he always does, but not eating much.  Bubby asked upwards of 20 times (in different ways) if we would pleeease go to a museum. Beans and museums aren't a good mix, so we were unable to honor his request, much to his dismay.

We went to a few places and did a bit of window shopping, while taking turns staying in the van with Beans, in the places he finds too noisy or overwhelming.  When we arrived at the mall I thought it was a good place for him to finally get out a bit and enjoy his day.  He typically likes the mall.  However, he remembered he does not like escalators, and the first store we went into had one.So, I had to carry all 55 pounds of screaming Beans out of Sears to the van with onlookers wondering (I'm sure) if I was a kidnapper.

By the time all was said and done when we got home it was almost time for bed.  The first thing everyone in my family does when we get home from a long day out is scatter to spend some time alone to regroup.  After that it was late and definitely time for baths and bed.

It wasn't long after putting the boys to bed that I hear "Mom, Bean's stinky!" Which is pretty common. No big deal.  Except this time Beans decided to get naked before pooping.  It was a pooptastrophe and it was everywhere.  I handed him off to Dad to get cleaned up and I scrubbed the carpet and the heating vent. Yes, he pooped on the heat register. We got it all cleaned up and put him back to bed at about 10:30.  I had to go back in a time or two to tell him to get to bed, and give Bubby a drink.  But, relatively quickly after there was silence.  I thought Beans had settled in and gone to sleep, as it was late.  My husband and I watch TV for awhile and decide it's time for bed at about 12:30.

We go to do the routine nightly checks on the boys before bed.  Usually to uncover faces, and make sure Beans has his blankets on him.  Then I hear "I can't find Beans" from my husband.  I think to myself, what do you mean you can't find him?  I go in the room expecting him to be curled up in the corner of the bed with blankets covering him. I quickly find this NOT to be the case as I remove all the blankets from his bed. Then, I turn my head and see one of the most scary things I've ever seen in my life.  The window and the screen is open. I yell "The window is open!" at my husband who proceeds to try to run so fast through the house that he falls down and gets hurt several times.  He is not calm in emergency situations.  We get outside, in our robes, barefoot, in the cold running around calling for Beans. I begin heading for the backyard, because that's where he often goes when he runs outside. About as I am to turn the corner I see a police car driving down the street.  My husband and I begin running for it, yelling "I lost my son!"  When we finally get to the car, the officer replies "Is it this one?" We say yes and he asks if he's autistic.  I'm so dizzy and out of breath I can almost pass out in the middle of the street.  I don't think I've ever been so scared in my entire life.

The officer brings him in and explains that he was called to the next street over about an hour and a half ago because he was found trying to get into someone's house.  They opened the door and let him in, then called the police.  I so appreciate whoever did that! The officer brought him back to the police station for awhile, then decided to drive around the area he was found to see if any doors were open to indicate maybe where he had come from.  That's when he came across us. He asked us if Beans was always moving like he was at the station and when he brought him home, and we verified that yes, he never is still.  He always moves and is always into things.  The officer said he couldn't keep up with him very well at the station.  I'm guessing he thought that he could take him to the station and write up a report, and found out that was not possible in a room that's got much of anything in it. I'm sure he was knocking everything off of desks and shelves and trying to leave.  Trying to eat any plants, paper, or whatever he could find.  We live in a very small town, so I doubt there were other officers around to help much.  There's not too many on duty at once. I think the officer had enough experience with Beans to have some empathy as to how he could be more than a handful.  I was so worried that they'd think we were awful parents.  He remarked how many gates we have in our house and extra locks.  We thought we were on the up and up in safety.  Guess beans found the weak spot.

We purchased window alarms yesterday.  I don't know if they'll work or not, because he keeps removing the sensor, which does set the alarm off.  I know when he removes it, but I don't want to have to be constantly reattaching the alarm everyday, and him getting his ears hurt by the shrill sound of it.  I wish I could say he was more cognitively aware of the fact that removing the alarm is going to hurt his ears, but I'm not so sure he'll get that cause and effect.  Maybe, he will.  I'm still considering other safety measures for his window, and a few others he can get to.  I will be doing an entry next on all of the safety precautions that we have done so far to help others (especially newly dxed autism parents) put together a safety kit. You can find that entry here.

This is far from over as Beans ability grows and he learns new skills, but remains unaware of danger.  I am astonished that I have sent out e-mails for help in finding him a medic bracelet that he can wear, but not remove and I'm met with a lot of "i don't knows' from people like his autism specialist and developmental disability case manager.  This has to be common in the autism population, especially those that are severely affected by their autism/and or intellectual disability.  There is nothing in place at this time to help our children if they are lost.  More about all of that in my next entry about safety.  I am just glad that ours was a happy ending and my handsome guy was returned safely to us.

30 comments:

  1. Oh my goodness. I'm so glad he was found safely and that the family who let him in helped out in that way. I hope the window alarm system works out somehow.

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    1. He's still removing it some, but is quickly figuring out that it is going to sound every time her does, so I think he's about done messing with it.

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    2. Have faith my friend, he might learn faster as he ages. People thought all kinds of limits on me, but today, I have none. I live all by myself, and I do what everyone else does. I live a pretty normal life, whatever normal means? However, your sun won't stay like he is forever. Just always talk to him, not at him. My Mom made me self aware, just by doing such, and she never got mad or upset with me, but like your son, I had to learn things too. So just keep talking to him, and you will watch him grow. Kids grow at different speeds, some grow slowly, then climb so fast, when you least expect it. My Mom was told I would not ever walk or talk, and I was supposed to go deaf and blind at a young age, and that never happened. I can see it all, and my Mom helped me to be it all. I'm living proof of what wasn't supposed to be for me. My Mom was my personal God to me, and she is one now, she is dead and gone now... She predicted my website eleven years ago, just three days before she passed away back in May of 2000, and eleven years later, I have created her prediction. SPACEUPHORIA. I also tell my viewers how my website became possible.. I sure hope you go to it, and know that your son will amaze you all someday... I just know it!!!! Oh by the way, I replied to your wonderful reply about treating people nice only takes a minute of your time. I just called myself Joe for short..

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    3. Thank you for your comments, Joe. I am glad that you stopped by and reminded me (and others) about how ASD kids can grow and learn, too. Thanks for your other comment, too. I did visit your site. It was really interesting. Lots of graphics. Looks like you spent a lot of time working on it. Looks good!

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    4. Thank you so very much for visiting my website. Yeah, I sure did put a lot of time into it. Years of time. The website happened totally by accident. I was working on the masterpiece for nine years, plus two years now. I didn't know I would turn it into a real deal website. When my cousin Paul gave me some of his server space back in February of 2010, I had most of the ingredients all ready, but the look and feel of my Mom's prediction is two years old, and all I had was the graphics and my concepts, a few years after my Mom died, but the look and feel is all new. I never ever dreamed that my Mom was right about seeing a website, I had done, way into the future. Eleven years after her death, I created what she said she saw me do. Yet, at the time, I just thought she was dreaming crazy things, because of the drugs and the cancer. I actually made her cry, when I told her it was just a crazy, stupid dream, and I never did any of this stuff she saw me do. I wished I could go back in time and tell her she was right, but I cannot, can I? Anyway if you go back to the website, there is a page about JCR, and you can watch a documentary about me. It is pretty wild, and a real miracle happens to me in that video, it will make you cry, unless you have no emotions of any kind. When my Mom saw the website, I never had the graphics, or anything, just my computer skills were all I had, and my Mom also knew such, but the website and my Diploma, and a possible computer science Nobel Prize was also foretold to me, and that’s when I thought my Mom was losing it, but everything she said, came to pass, except the computer science stuff, but I’m sure that will happen too. If you ever go to the WARP CORE JMD, you will read stuff, that my Mom foretold, and what is to come for me. It’s located on the INTERSTELLARONE page, and every star ship has an engine of some sort, and the power source is my Mom’s everlasting love she always gave to me, and it never ever runs out, as long as my heart beats that is..

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  2. Oh, this is so scary. I am glad everything worked out!

    Daniel was escaping out of the backdoor when we first moved into this house. He got out of the backyard fence one time to go see the neighbors air conditioning fan. He was escaping to see our air conditioning fan and the neighbors. I caught him one time trying to touch the blades!

    I cannot even describe the fear that runs through me when I cannot find him. He has no sense of danger.

    We had to put alarms on the backdoor and our windows. The alarm did work for us. Daniel does not like beeping noises, or alarm sounds at all. I think he was afraid it would beep if he touched it.

    We still use gates at night for the front of the house. For some reason he will not break the rule of taking down the gate without asking, but he would escape out of the window or the backdoor?? I don't know.

    I am so sorry for the "pooptastrophe" too. They haven't happened here in a while, but I still get sensory overload just thinking about it.

    Hopefully the window alarms will work!!

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    1. A child that's fascinated with moving blades is scary! I kinda used to be that kid. I got my finger stuck in a fan at a store once at the check out counter. The clerk about passed out. I think she had to go on break after we left! lol

      Beans can't get over the gates we have in the house yet. They're too hard to open and he isn't a climber, yet. (The operative word there is yet.)

      I'm glad pooptastrophes have not happened for you in awhile. They went away here, too for several months and are now back with alarming frequency. Don't know why.

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    2. Could it be possible to place a device, which could be heard from home? Even a small camera, somehwere where he can't see it? Cell phones could be used for such things, can't they? A camera small enough would do the trick, with audio as well. At least then, he could be monitored from everywhere, via cell phone.. Just a thought..

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    3. Not sure how I'd attach something like that to him without him messing with it. There are GPS devices that you can attach to their wrist or ankle, though.

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  3. Wow! I can only imagine how u felt, ur heart must've been in ur throat! Thank God it all turned out ok in the end. My son lacked a sense of danger a little when he was much younger but never attempted to escape our house. Luckily his autism symptoms improved as he got older and he is completely verbal now so he demonstrates the ability to follow safety rules & avoid danger. (Its a combo of diff things: maturing to become more responsible for himself & responding really well to both traditional therapies and biomedical interventions.) So now that my son has an age appropriate sense of danger, I don't have that constant fear anymore. Infact, he is quite the rule follower & rules can NEVER be broken in his mind, which is kinda cute. Sometimes. Haha But I'm extremely grateful bc I know what it's like. I know what it's like to have to get out ur wallet & pay w one hand bc ur other hand is busy holding ur kids hand so tight for fear of him running out of the store. Very scary! But I won't take it for granted and we still take every precaution, just in case. BC u never know! My husband did something online for our kids having to do w if they get lost,run away,etc...It's called ALERT ID & from what he explained its really gr8 to have. Has something to do w ur neighborhood/community/local police and he uploaded pics of them to it. I have to look at it again but I wanted to share w u bc it may be something u want to check out. Best of luck (&safety) to u all!

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    1. I know what you mean about little rule followers. My older son sounds very much like yours. He used to be a big runner. The difference between him and his brother is that he'd run for a purpose, like to get to something, or to somewhere. Beans, I think just runs without any thought to where or why. Thankfully, like your son Bubby has grown out of it. I SO know what you mean about trying to pay at a check out counter with one hand! It's a challenge!

      Thanks for the suggestion. I'm going to go look that up!

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  4. When I was a teenager, more responsible people than my parents got a medic ID chain style bracelet and used a thick wire ring to lock it on my wrist, no clasp at all. It took four hands and bolt cutters to remove. Eventually I got used to wearing it. I rarely remove my ID bracelet now.

    My current bracelet has a "sister hook" closure like this:
    http://tinyurl.com/799lmyd
    Difficult enough that while in meltdown I can not remove it by myself.

    I thought I did not wander off anymore but my best friend says I still do enough to seriously scare him, still with little awareness of danger. I suppose it is unlikely I will "outgrow" doing this now. We got a gps tracker attached to me, something my parents could have used when I was little. Especially at Disneyland or on trips to big cities.

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    1. Thanks for your reply. I think you're right, he will not be able to undo a hook. His fine motor skills aren't all that good. I think I will buy him one. I thought about a GPS tracker, too. I'd have to look those up to see how expensive and bulky they are.

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  5. How utterly terrifying. I am so glad that you had a happy ending.

    Few agonies are more intense than a missing child.

    You did a wonderful job coping with such a difficult situation. I wish I could brew you some tea.

    Hugs,
    Lori

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    1. I am so sorry you had this experience - but glad it happened in a way you could learn from without him getting hurt or traumatized!! There is a gizmo - we had them - you put it on the person - and then there is a base unit - and if the two get more than 100ft apart, an audible alarm sounds. I think you can google alerts for people with alzheimers and find something! If not, tweet at meet (@opiecoop) and I will find info for you!

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  6. I empathize completely. My son absconded regularly when he was younger. I did everything to remain hyper-vigilant but he only needed a second while my head was turned and he'd be gone. He too had no purpose and no sense of danger. It got such that I thought "Is this the time I am not going to be able to find him?" There is a sick feeling in the pit of your stomach that seems to drench your entire body in fear. I'm not sure how old beans is but my son has for the most part grown out of this now. However, he still wanders if distracted.. but for a purpose which is a lot easier to manage. It's easy to manage a toddler when they have the propensity to do this.. but an older, stronger and more capable child that has absolutely no fear or sense of danger is terrifying. Even though our situation has improved I cannot stop being vigilant. Whenever he is out of my sight I fret. Years of conditioning that will probably take years more to undo.

    You are definitely not alone. I think the medic alert bracelet is an excellent idea.

    I wish you smooth week. Take care.

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    1. My older son ran off regularly until he was about 5. I remember it being quite difficult to have both of my boys out alone. When Bubby ran I couldn't catch him carrying Beans and he was too little to run quickly. Bubby always had a destination, though. Like, he saw something he wanted to get to, so would just go. Beans just runs and is never still unless he's sleeping. He's 8 and I'm sure nowhere near stopping anytime soon.

      Thanks for your comment. I appreciate hearing your story. :-)

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  7. Found the gizmo!! Gotta figure out how to get it fastened on. Our issue was roaming away at the park so we just fastened ours (it was NOT this one - it was a little kitty) to son's shoe. Not so easy while sleeping... http://www.mommyimhere.com/

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    1. Thanks for the suggestion. I'm not sure that that will work for my son, but I will be sure to include it in my entry (whenever I finally get it written!) about safety precautions and gadgets to help with runners and wanderers.

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  8. I'm really happy the police officer understood autism enough to handle it correctly. As well as that family. A double blessing for sure. Glad he is safe and sound.

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  9. So glad you got him back safe and sound! We have a RoadID for our son (roadid.com). We have the shoe model that kind of blends into the shoelaces. He tried to take it off once or twice, but is now it's just part of his shoe and he doesn't give it a second thought. Not perfect, obviously he's not wearing shoes at bedtime. But I figure if I pput enough name tags on him and his stuff there a chance one will stick (he uses school bus time to remove them from clothes, backpack).

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    1. That's kinda what I think, too. I am wanting to tag him in every way possible, hoping it will help.Thanks for your comment and stopping by!

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  10. Very scary to lose a child. Happened to me a few times, but only for a very short while (minutes). Understand the fear, and the relief. So glad it turned out well. Hope you find a solution to the bracelet idea.

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  11. Hi, someone may have already posted this and if so, sorry for the repeat! Does your community have project lifesaver? http://www.projectlifesaver.org/ This is a tracking device usually provided free or at minimal cost by law enforcement. We have used it for my son...

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    1. I don't think they do, but I'll look into it. Thanks!

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  12. Terrifying. So pleased that it ended well. You hear these stories in the news from time to time &, thankfully, they usually end well. I can't imagine what you all went through.

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    1. I always hear the stories and used to think, 'that's not going to happen to us.'Then it did. I'm feeling incredibly lucky that it turned out well!

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  13. I escaped out a gate that even my mother had trouble with when I was three and was found 3 blocks away, pushing my baby carriage and down the street. Mama had just gone in to change the laundry over to the dryer. Of course, I didn't get dxed with Asperger's Syndrome until 20 years later, but still relevant!

    Glad he was found easily enough. Has he shown any sign of trauma from the experience?

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    1. No, he really has no understanding of it all, I don't think.

      Your story reminded me of when I was going through my wandering stage. I'd hop on my tricycle and try to go to the local burger joint down the road all the time. lol My mom would be frantically looking for me and I'd be pedaling my little heart out. I used to run out the door and invite myself to the neighbor's houses, too. Guess, I was kinda ornery too!

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