A Ventography!

Just two moms letting off some steam

AUTISM PARENTS CAN’T LET THEIR GUARD DOWN… EVER!

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PART OF THE SERIES: AUTISM PARENTING

It was supposed to be a glorious Memorial Day celebration among friends.  Two families who have children with autism having fun, relaxing around the pool. No judgment, no pretending, no stress. We were all in the same boat. The men were on the patio discussing men stuff. I was talking with my friend Debbie by the pool.

Debbie is the mom of triplets – two of them have autism. They were seven years old at the time.

My middle son, Nolan, came through the screen door and needed my attention. I took my eyes off Brody (my youngest son who has autism) for just a millisecond to talk with him. In that timeframe, Brody (who was then 5 years old) had somehow fallen into the deep end of the pool, without making a sound, and was lying there motionless. Next thing I know, Nolan said, “Mom – I think Brody is drowning.” I looked and saw him there, eyes open, with his arms over his head. I went into overdrive and jumped in the pool to save him, clothes and all.

I pulled him out. He coughed up water, but was alert and seemed fine. I, however, was not. I couldn’t breathe. I had come to understand why drowning is called the “silent killer.” When I say Brody didn’t make a sound, HE DID NOT MAKE A PEEP. There was no noise as he fell in the pool, he never splashed, yelled help, or made any sound trying to fight for his life. Four adults and two middle schoolers were all outside, steps away, and yet nobody realized this had happened until Nolan sounded the alarm.

My husband kept telling me everything was okay, but all I could think about was what might have happened.  Brody was petrified of swimming for the next two years and that was fine with me.

Even though I was emotionally exhausted, our friends decided to stay for dinner. We thought… what else could go wrong? We had no idea what was coming next.

After dinner, it was time to round-up the kids to go home. Debbie’s husband, Bob, went to put Katie (one of the triplets with autism) in the car. We all followed out to the garage to help carry their bags, etc. Finn, their other triplet with autism, was reading a favorite book on the couch, happy as a clam. Or so we thought…

Once Katie was safely strapped her in her car seat, we came back in the house to get Finn, but he was nowhere to be found. Finn had a habit of sneaking into people’s closets to go to sleep, so we all figured he was upstairs in a closet.

We searched every closet and did not find him. We started to get a little panicked. We sent one of the older children to the garage to watch Katie while we continued the search for Finn. In that timeframe, Katie had locked us out of the car, with the engine running!

We decided to “divide and conquer”. The dads focused on talking Katie into opening the car door. And the moms began the mad search for Finn. (Nolan was assigned to watch Brody). We were completely freaked out because we had ruled out the possibility that Finn was inside the house. We worried, maybe he had drowned in the pool or the pond that was behind our house.

The dads finally talked Katie into opening the car door. Her dad took off in the car to drive the field behind our house, shining the headlights so that he could look for Finn in the pitch black and rainy night.

My husband, Tom, and my oldest son were now running up and down our street, knocking on every door, and yelling at our neighbors to help look for Finn. I got on the phone to 911 and pleaded with them to hurry – there was a little boy with nonverbal autism who was lost. At that moment, my friend Debbie let out what I can only describe as a primal scream.

Inside, I wanted to throw up. I felt responsible because this had happened at my house. I was mad that I didn’t call the whole thing off after Brody had almost drowned. Why had we tempted fate? Despite my overwhelming guilt, I knew I had to keep it together for Debbie’s sake.

911 called us back and asked if Finn was wearing pink shorts, a flowered shirt, and was holding a book. That was our Finn! We got Finn’s location from the 911 operator and Tom and Bob jumped in the car and flew to the scene where they were met by an irate couple and a police officer. Finn had run all the way up our street (about a half a mile), crossed a busy two lane road, and almost made it to a major highway when the couple, sensing something was not right, stopped him.

The couple who found Finn was angry because they felt Bob and Debbie were irresponsible parents. They should have watched Finn more closely and they felt Finn should have had his name in his clothes or worn an identification bracelet due to his communication issues.

While we appreciated these strangers for keeping Finn safe, the last thing Bob needed, at that point, was to be scolded. We knew they were lashing out because they were afraid, but they unfairly judged Debbie and Bob. They had no idea what it’s like to deal with two children with autism 24/7 and how much effort it takes to keep them safe. Sometimes, when you’re out of your element and routine, unforeseen events occur.

We were all emotionally drained and knew this was a life changing event.

We were not careless parents. We were parents who were dealing with three children who have autism, attempting to enjoy Memorial Day like everyone else. We just wanted to relax, enjoy a peaceful day, and be “normal” for once. Perhaps we were guilty of letting our guard down.

That day, we learned parents who have children with autism simply don’t have the luxury of letting their guard down… EVER.

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Author: A Ventography!

A Ventography is about: 1. Encouraging and empathizing with other parents on the autism spectrum. 2. Recycling and simplifying information on the latest autism news and health and diet tips. 3. Asking thought provoking questions designed to make us rethink what we've been told about autism. 4. Helping connect the dots that show, in some cases, autism is more than a brain disorder. 5. Challenging parents to rethink what they've been told, refuse the status quo, and escape the whirlwind of confusion.

37 thoughts on “AUTISM PARENTS CAN’T LET THEIR GUARD DOWN… EVER!

  1. As the grandmother of 3 children on the spectrum, my DD and her family can relate 3 times over to this post and sympathize 3 times more with the situation whiCH is TRIPPLED when you have 3 on the spectrum . EAch is totally different, with different needs, strengths and weaknesses, but QUIET ~ to a child, these children take quiet to a whole new level. Having other family members with “regular” kids, it amazes me how “noisy” those households are compared to my daughter’s home. And being on the spectrum doesn’t stop you from being the cleverous (is there such a word?) youngsters in the world. I have one grandson that would make a fabulous safe cracker or maybe professional lock tester b/c even as a pre-teen he could get past locks of all size and types…. multiple locks?.. oh just a few minutes longer… With one of the 3 known as “the wanderer” we ALL learned early on to have eyes in back of our heads and to be able to judge “levels of silence”. Our wanderer has put the fear of God in each of us more than once and because of the dangers they face being non-verbal, beautiful children in todays’ world takes the word TERROR to a whole new level. It is appalling to me to hear in this day and age, with the number of children on this spectrum increasing daily that some people still judge these caretakers negatively. They are the blessed ones! One “regular” granddaughter is the 3rd very knowledgeable, sensitive, gifted and unique parent in this household and does more in one day than ANY adult I have ever known.She and I have shared many, many experiences that will never ever occur in a regular household and would bend the strength of the strongest parent in the world but it just made her the strongest, most competent young woman I know ~ and rather than breaking her spirit has empowered her to reach out and teach children on the spectrum while still in H>S> She is going to college to learn more to do more to “find a cure” ~” develop a treatment” ~ to HELP those with autism. Maintaining a spirit to do EVERYTHING a regular student does, including maintaining an A average, capt of cheerleaders, playing piano and clarinette, homecoming queen, sister to her sister and two brothers on the spectrum and the best granddaughter this gramma could ever have… SHE has shared the experience of tracking her sister to the local pond where she plays up to her neck in water she has no idea she cannot breathe underneath. BTW , looking for scholarships now…. all help welcome >G<… a essay about this kind of experience accompanies her college apps. and we hope that the powers that be will reward this young woman with the education she needs to accomplish her goals. Thanks to all of you who are spreading the word of this experience that is all too common these days and hopefully will encourage those who "know" educate those who "don't know" to become better human beings and more caring friends of those families with children on the spectrum. To those out there who cannot relate, you are sooo lucky and should get down on your knees and pray to be able to someday help those you do not understand and forgive yourself for ever doing anything or saying anything to make life any more difficult than it is for those entrusted with the care of these very special people.

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    • You sound like a wonderful grandmother. So nice that you take the time to appreciate the uniqueness of your grandchildren who have autism. Love your point about how autism makes you stronger – we couldn’t agree more. Your granddaughter sounds incredibly motivated and mature… we pray she does find the cure for autism! -L&M

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    • Thanks for the comment to my “epistle” ~ when it comes to my “special” grands, I tend to be quite verbose. The way my daughter & son-in-law & oldest granddaughter live their lives with the three younguns ON the spectrum is nothing short of amazing. The encouragement my DD gives online to various others with children on the spectrum is ongoing & never-ending because the need is never-ending. “Guilt is a waste of energy”, she says; and she should know… it takes unbelievable amounts of energy to just get through a regular day, & there are rarely just days that are “regular”. The things that 3 different kids can and do do ( ooops no pun intended >G<) are unimaginable. What you think they will never do, they do & you just "deal with it" and go on. On the other side of the coin, the unconditional love and affection that comes from these unique children is mind-boggling. The " I sorrrwee, Mimi" given after an unexpected "hit" is indeed heartfelt & goes a long way to forgiving a child who can't always control his behavior. Life is never dull, but it also is very, very hard and thus, those of us that can should NEVER criticize and ALWAYS encourage those that care for these children. And remember, it doesn't matter the chronological age of these special needs individuals; they are always our "children" and need support from us UNCONDITIONALLY AND NEVER~ENDING! OK, here is Grandma Mimi climbing down off her soapbox… LOL

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    • We don’t think you were on your soapbox at all! You are a loving and committed mother and grandmother. In fact, we are writing a post honoring grandparents like you so be sure to check back with us. Thank you so much for taking the time to comment. -Leah & Molly

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    • Thank you. Please feel free to edit any of my posts if they are too long in your opinion. I tend to say in 20 words what better writers say in 10. Your site is bringing hope and understanding to many autism families like mine because I truly believe that sorrows shared are halved and joys shared are doubled. Thanks for YOUR efforts here, now and in the future.. See? All that verbage to say THANK YOU!

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    • Thank you for the pat on the back – it means so much to us. We love the saying “sorrows shared are halved and joys shared are doubled”… I think we’re going to have to use that on our blog! Thanks again for your support of us and all that you do to support your family. -Leah & Molly

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  2. I am so glad to have gotten to the end of the story to learn that all of the children were OK. The sad thing for parents like us is we can never really relax, we live on constant alert. To someone that doesn’t understand this but has children just imagine living life constantly (forever) with a very adventurous young toddler that hardly sleeps and knows how to open all the doors and windows.

    You are not alone when it comes to letting your guard down. When my ASD son was about 6 I took our dog out for a walk. My Mother was here so I had someone to stay home. My son who was somewhat verbal answered (like always) that he did not want to go on the walk, so I left with the dog. 30 minutes or so later I was walking a few streets over when I noticed a blond child in amongst a family of dark haired children. Ye-siree…. it was my son. My Mother who was staying at the house was working on her computer and assumed he was playing in his room (as he always did), sadly she did not even realize he had left the house. It turns out that my son had changed his mind about going for the walk, and went out independently to find me. I feel like I was given one chance and am terrified to make a mistake again, and we were all very grateful that he was safe. My Mother was devastated. It could have turned out so differently, and I know that, I will never forget the chance I was given. Thankfully for me, my Mom graciously is still willing to stay my son, and like me she is on constant alert. I am now single, without her I have limited resources and could never leave the house. We both learned a very hard, but valuable lesson.

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    • Thanks for sharing your story. We have talked to many autism parents who have told us similar scary stories. They also expressed concerns about living their lives on constant alert. Glad to hear your son was okay. -L&M

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  3. i can not relate to this story but i have a nephew with autism and i know his parents can not go no where at the same time because they will not leave him with anyone and yes i see where you say parents with kids that have autism get left out

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  4. I’m so sorry you had this experience. I can only imagine how terrifying that course of events would have been. Thank you for sharing. –Joy

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  5. I can testify to the fact that children can drown totally silently even while adults are nearby – it very nearly happened to my non-autistic 3 year old a few years back! I was lucky enough to have glanced up at the very moment he decided to try ‘stepping’ on the water of our new pool (in the deep end of course) and went in without a peep (or a splash). I also had to jump in fully clothed to rescue him and thankfully he was okay, but you can never drop your guard with any child around water.

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  6. I can totally relate. One morning I went into my son Rhys’ bedroom (he was aged about three) to find no sign of him. I assumed that he’d got up early and gone downstairs to rearrange/trash the living room while I slept on – a common occourence back then.

    When he wasn’t there I went into the kitchen and checked the cupboard that contained the gas boiler. No Rhys. And that’s when I saw the broken glass and the pool of blood on the kitchen floor.

    It was difficult to stay calm, but I followed a trail of blood back up the stairs and into his room… and found a blood-soaked toddler in his wardrobe! I think I scooped him up, shoved him in the bath to clean him up, investigated the wound, slapped Savlon on it and covered it with a plaster in record time!

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    • If we saw blood we would freak out! How amazing that you remained calm. Thank God he was okay. Thanks for sharing your story. -L&M

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    • I’m not too bad with injuries, depending on what they are, so I decided that there wasn’t enough blood to actually panic about until I could find Rhys and assess the injury (a fairly deep cut on the end of his big toe). My grandmother was a staff nurse and had taught me first aid and described some of the things she had dealt with, so I already had that advantage when I became a care assistant too!

      My autistic nephew once went missing during a festival at the largest park in my hometown. My sister had only looked away for a second, and he was just gone! He was eventually found with a stallholder, playing with some game from her stall that she allowed him to keep; she’d realised right away that my nephew wasn’t like other children so she sat patiently with him until he could be identified.

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    • How frightening for your sister! Glad to hear the stallholder kept your nephew safe. -L&M

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  7. Very scary but thank GOD they were both alright after these events. I think every parent I know who have children with autism have escape stories. My daughter managed to get out of our hotel room at the MGM Grand in Las Vegas when she was 4 when I went to the bathroom and my husband was laying in bed watching TV. How he didn’t notice she left I still don’t know (he ended up blaming me….can you believe it, I was in the bathroom!) Non-verbal autistic child running around the largest casino in the world…thank God we found her sitting in the elevator lobby looking out the window at all the lights. It was the same view in our room so I have no idea why she did this. I just am glad she didn’t get into the elevator or we never would have seen her again.

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    • How scary! Escape in a casino… that could have been so bad! Thank God your daughter was okay. Thanks for sharing your story. It is so helpful to know we are not alone. -L&M

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  8. I was so afraid of what the ending of this post would be! We got a service dog for our 8 year old who has autism 6 months ago for this very reason. When he was younger and non verbal, we made him wear a med alert bracelet. We finally let him stop wearing it at 6 years old when he could be more vocal about his names and our names.

    Hang in there!

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    • Are you happy with your decision to buy a service dog? Has it made your life easier? Our friend Debbie has thought about getting a service dog for her children as well, so we are curious. Thanks for reading. -L&M

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  9. Thank you so much for sharing! Those without children on the spectrum just don’t understand how quickly these things can happen. You are not alone.

    One Saturday morning a month ago, our 4-year old son – who is verbal – said he was going downstairs to get cars. This was typical. When he didn’t immediately return with the toy cars as he usually does (only 3 minutes or so later) we called for him. No answer. We figured he’d gotten distracted by something – likely another toy – and wasn’t responding because he doesn’t multitask well (not unusual for 4 year olds in general, but especially true for kids with Autism).

    Nevertheless, we headed downstairs to investigate as we had learned his silence can also indicate that he is up to something messy – like floating toys in the dog’s water dish or making a “pond” of it, or worse, fecal smearing.

    Downstairs there was no sign of our son. Panic. A quick glance to the back door. Closed and deadbolted with safety knob on. Door to the garage showed the same. The front door, however, which had also been locked, deadbolted, and had a childproof doorknob safety cover on, was open – and the safety knob cover was in pieces on the floor. OMG!

    It had still been less than 5 minutes. He had to be in the yard – just steps away from the front door. We ran outside calling his name and running in opposite directions. At that moment, two neighbors who live at the end of our block rounded the corner with our son in arms. They were out biking and saw him running towards the retention pond by the subdivision clubhouse – in bare feet and pajamas – almost a half mile from our front door. Thankfully, they recognized him and knew who we were! When asked where he was going, he replied “I swim in pond” (he can’t swim, and it’s not that kind of pond).

    Our neighbors were much more understanding than the folks you encountered, but there is still the feeling of being judged as inattentive or careless parents. Needless to say, we have since installed chain locks at the top of all doors leading outside and reinforced the doorknob covers with heavy packing tape.

    It only takes a minute or two, and they can indeed disappear – without a sound. Like you, while everything is ultimately okay in the end, the feeling of horror and guilt around the “what if the worst had happened” will not soon disappear.

    No. You can’t let your guard down. For even a second.

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    • Thanks for validating that we’re not crazy… that our kids can disappear in a minute and without a sound. Thank God your son was okay! How amazing that your son broke the safety knob cover. Even when we think we’ve taken safety precautions, our sneaky little kids outsmart us! Thank you for sharing your story. -L&M

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  10. When my daughter was young (she is 20 now) she would get into the neighbors’ homes and we would find her in their kids’ bedroom … in a millisecond she managed to sneak out the door and find her way. These people were always so very cruel to us. If it wasn’t difficult enough sorting thru autism as if there was a handbook and guidance … and grieving the loss of our daughter. It is easier now that she is older. She does not sneak away … but she needs to be watched 24/7. I feel for you.

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    • We are so sorry to hear that your neighbors were cruel to you. People can be so judgmental. We relate to your pain over grieving the loss of your daughter. Glad to hear your daughter no longer sneaks away… gives us hope that maybe the same will be true for our kids! -L&M

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  11. Boy do I know this frIghtening feeling, so happy your son is ok. This happened to us last summer while house sitting while my aunt was on vacation. As Autism parents we don’t have the luxury of letting our guard down ever, not even while I sleep!!! Such a hard mission we were assigned to.

    http://alexautismoysurecuperacion.wordpress.com/2011/08/24/how-much-more-can-i-take/

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  12. I’ve been accused more than once of being ‘unlike-ably tense’… most often without being told to my face. Silent judging the parents of autistic kids for being over protective only shows ignorance. A lack of personal experience, where there truly needs to be support, listening, understanding, acceptance, and respect. When my oldest son was just a toddler, he made a constant habit of trying to run into traffic… to run into public crowded areas… to jump into swimming pools… to climb railings and random ladders… to inspect the under-sides of running vehicles… I could go on and on. He’s 14 now, and I know that him NOW being considered ‘highly functioning’ should make me feel better… but he’s is still AUTISTIC. He still struggles every moment of his day with spinning (stimming), difficulties with social skills, age appropriate activities and conversation, etc. This blog post nailed it. I AM forever changed by my experiences with him… and I will never, ever be the naturally calm and relaxed person that I used to be. I’ve lost relationships with people that I care about because they don’t understand, and would rather judge me than try to understand my struggle. There’s nothing easy about raising someone with little or no sense of self-preservation or safety, and it hurts. Being isolated only adds insult to injury. Hugs and love to these families for all of their struggle and pain.

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    • We so relate to what you said about how your son’s autism changed you forever and that you can no longer be the calm, relaxed person you used to be. We have had the exact same conversation with each other about how people just don’t get it. We too feel isolated at times and have lost friendships. Sometimes it’s easier to isolate ourselves. We tend to gravitate to people who live our kind of life. Glad to hear your son is doing better. -L&M

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    • Isolation is the most intense thing our family has experienced. Most people do not know what to do. Instead of trying to understand they back away or say things that are completely out of line. Our kids are an amazing filter which shows us who people REALLY are. Those who treat our kids with respect, understanding and love are worth their weight in gold.

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    • We could not agree more.People who treat our kids with respect, understanding and love are worth their weight in gold! -L&M

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  13. I can so relate. Excellent post.

    Nick

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  14. Amen to that. They are so fast, courious and quiet. When it is quiet, I feel the need to go look for our daughter Lizzy or ask one of the kids where she is. This guard translates into every aspect for me. I let my guard down and trusted what the vaccines said they would do. NEVER AGAIN!! I am so glad that Finn and Brody were okay. What a frightening experience. Sounds like a day of triumph and gratitude. Through the grace of God all was well.

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  15. Reblogged this on Your Riverside Forum and commented:
    We have had similar incidents with our nine-year-old son. It’s frustrating and this sums up both sides pretty well.

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