Today we also remember the autistic children who have eloped and died.
A 2017 study found that almost a third of reported ASD (autism spectrum disorders) missing person cases related to wandering/elopement from 2011 to 2016 in the US ended in death or required medical attention. According to this study, accidental drowning caused over 70% of lethal outcomes, followed by fatal traffic injuries. Injuries or traumas found ranged from minor scrapes and bruises to non-fatal traffic injuries, near drownings, dehydration, and physical/sexual assaults after elopement.
Pie chart courtesy of the National Autism Association
Lethal outcomes to autism elopement occurred at a rate of about once a month on average in 2011 to about two to three times a month on average in 2015 and 2016. Children at ages 5 through 9 exhibited the highest number of deaths, while children under 5 faced the highest lethal risk with cases ending in death nearly 60% of the time.
Most people who elope or wander off were found in or near water, traffic, at a stranger’s residence, or in the woods. Low-sensory locations are also a common theme such as abandoned areas and vehicles, cornfields, farms, tree nurseries, libraries and other typically quiet settings.
People in this study were under different types of supervision when the elopement occurred, with non-parent supervision accounting for 45% of cases. Times of transition, commotion, and stress increased elopement risk, and those who were noted to be upset or agitated showed a higher risk of abruptly exiting into traffic or other high-threat situations.
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Today is one of the saddest days of the year for many on the autism spectrum as well as family members and loved ones of children on the spectrum. It’s the day that we remember those autistic children who have wandered away, died, or drowned over the years.
Why are we remembering these kids?
Because children on the spectrum are attracted to high-sensory places. In fact, when a young autistic child goes missing, families are told to head straight to the nearest body of water to look for them.
It doesn’t take much water to drown. A little boy was with his father walking in a park last year and had gotten a bit ahead of Dad, still close enough where dad could see him, when suddenly the child bolted.
After several hours of searching, they found the child face down in a stream in six inches of water. Six inches of water is all it took.
When I mentioned I was writing this piece, people asked me why kids autistic children are drawn to water. It’s because when we’re in water we tend to feel relaxed and comfortable. For someone on the spectrum, like me, I can say that most of us like it because there’s even pressure on our bodies.
Young children only know that they feel comfortable; kids don’t think about the fact that they can’t breathe, and we all know the end result of trying to breathe underwater:
Death by drowning.
How can we prevent these tragedies from happening? If we know we have a runner, we can focus our attention keeping them close. We can teach them to swim. We need to alert the local authorities about our children who wander so they can prepare in the event of an elopement. We can get a service dog.
Most people think service start at $10,000 and skyrocket from there but that’s not true. My service dog, Tye, came from Dogs Nation in southwest Missouri and is a rescue dog, just as all dogs are at Dogs Nation.
They work on a donation basis (and not from the families that take the dogs). They rely on donations of food, flea and tick prevention, dog houses and financial donations.
A service dog can help block the child from entering the water and if a worst case scenario happens and the child hits the water they can alert parents or family members.
Shawn Abell of Dogs Nation told me a story of something that happened nearly a decade ago near her home: A child went into the water and a nearby dog, a non-service dog who was a retriever, did what he was trained to do and went into the water to retrieve the child and saved his life.
Today is an important day for parents, family members, and loved ones of children on the spectrum and a day to educate those that aren’t aware of just how serious a problem elopement is. Amongst deaths of young autistic children, 91% die by drowning and that is way too many. Even one is too many.
If you’re reading this, please share it with families of autistic children and their caregivers so that no child has to go through this again and so that next year we’re not remembering deaths from 2019.
Take the time to inhale your grandfather’s scent – he’s the last grandparent you have and you won’t have him much longer.
Embrace the Puppy Love at age eleven with that boy who you will still think you love.
Try to remember every second of dying Easter eggs with your Mum – when you dye them with your own kids, every year, you will question how she made them so beautiful.
Don’t take your big brothers for granted – they have taken care of you since you were born, and not all teenagers would’ve been so willing to let their baby sister tag along as much as you did.
Embrace your whole childhood – when you get older and watch your nieces suffer, you will realize how very lucky you were.
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Dear Pre-Teen Me,
Don’t “dump” your boyfriend five-hundred times. At twenty-eight, you will still regret being such a jerk. Also don’t take him for granted – he was a decent, patient, kind boyfriend for an eleven-year old kid. Take the time to look at each of your boyfriends in a different light; one day you will learn they could’ve been more, but you were too blind to realize it.
Realize that just saying you think you will have big boobs doesn’t mean it will happen.
At least not naturally :-).
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Dear Teenager Me,
Don’t be such a bitch.
As you get older, you realize that having bitchiness ingrained in you makes it difficult to have friends. People aren’t as accommodating as your teenage friends were.
Don’t let that one man pressure you into something you’re not ready for – sixteen really is too young to make the commitment you made. You will always question that decision.
When you are nineteen and fully disgruntled with life, you will meet a man who will make you realize that life outside of this still exists. He will be there for you, no matter what, for the next ten years (and counting). You did good not pushing him away.
Also, physical abuse is never okay. It gets better – it stops, but you should’ve spoken up when it happened.
Life could’ve been so different for you.
———-
Dear Twenty-Something Me,
DON’T sleep with that man.
Even though neither of you wanted to regret the act, you both will. An affair is never okay – regardless of how “in love” you are, regardless of your reasoning.
It will ruin your friendship for awhile, it will ruin your marriage for awhile (although, not enough to make you strong enough to leave), and it will ruin your soul forever. Even when everyone else has forgiven you, you will not have forgiven yourself.
IT IS NOT WORTH IT.
Please realize that your husband will never change. He will change long enough to keep you around whenever he senses you may be gearing up to leave, but he will not change.
He can’t be someone he’s not, and you can’t either.
Stop trying – just being you is enough for someone, even if it’s not for him.
Your twenties aren’t all bad.
Your two children will be worth it – you will see so much of yourself in your daughter. Know that entire first year of constant crying, up five+ times a night, constant demands to be held does get better. She will not be the angelic infant your son was, but you will see her fighting spirit every second of the way.
Embrace their differences – this will be difficult sometimes, but overall, you are doing a decent job.
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Dear Current Me,
GROW SOME BALLS AND LEAVE ALREADY.
That man you met at nineteen still feels like he’s The One.
He’s still your support, your encouragement, your confidante, everything that your husband isn’t – and never will be.
Every ounce of your being (his too) screams that you belong together.
Act on it – make it happen.
Don’t keep letting fear hold you back. Don’t waste another ten years without that love. Your excuses aren’t particularly valid, no matter how you package them.
And quite frankly, an innate desire or moral conviction to only get married one time isn’t worth the unhappiness you’re causing yourself.
Welcome to Father’s Day 2019, here at The Band Back Together. Today, we celebrate fathers-to-be, fathers whose treasures who are in heaven, fathers who don’t deserve the title, fathers who have shaped who we are for good, for bad, for life.
Wherever you are, whatever you are doing, Happy Father’s Day.
The Band.
To The Man Who “Raised” Me-
You married my mother when I was barely three-years-old.
I don’t have any memories of that day, but the pictures show a happy little girl. I don’t know what was going on in your mind as you allowed me to grow up believing you were my father.
I’ve seen all the pictures. I know they portray the quintessential American family.
I have memories that tell me those pictures were lies.
On the surface, I never wanted for anything. I had clothes that fit me, food in my belly and most of the coolest toys. What I didn’t have, was you.
Even at a young age, I remember feeling that I was somehow less than my sisters, somehow different in your eyes. As I got older, I picked up that it had something to do with having a different last name.
But I never got any explanation as to why.
I was only nine when you brought your daughter from a previous marriage to live with us. I was NINE YEARS OLD when you and Mom sat us down and explained that you weren’t really my father.
You asked for my permission to adopt me.
A chance to finally be YOURS?! Who could turn that down? Did you realize that I didn’t have the cognitive ability to understand what was happening? Did you know how desperately I wanted to have your last name? To be a part of the family, to no longer be different?
Why you and Mom went through with the adoption, I’ll never know. You were already fighting so much. A mere six months later, you were divorced.
Do you know what it cost me to tell my mother that I wanted to live with you instead of her? Do you realize that my desire to please you, to matter to you, caused a chasm between Mom and me that can never be repaired?
And what did I gain? A step-mother who made sure I continued to feel like less, separate from her family. The privilege of being your built-in-baby-sitter and maid. And constantly being bullied by my step-sisters every day of my teenage years. All while you turned a blind eye.
Somewhere along the line, I stopped trying to win your love and started to seek what I was missing from boys.
Even the negative attention I received when I acted out was better than feeling invisible.
For years I called you “Dad.” I bought you cards on Father’s Day every year, signing them, “with all my love.” For most of my life, I’ve tried to please you. I stood by you when others wouldn’t, and made excuses for you when you hurt others. Or me.
I can’t do it anymore.
I have a son now and while I may not get along with his father, I see what a strong relationship they have. I have removed the blinders – I see that we’ve never had a relationship. It’s not really a relationship if one person doesn’t even acknowledge the other.
So this Father’s Day, there won’t be a card from me in the mailbox. You won’t get a phone call or a text.
For once, I’ll be just as invisible as you always made me feel.
I spent the last many years married to a woman with fairly severe (clinically diagnosed) Borderline Personality Disorder. I could very easily fill an entire book writing about what that experience was like, so it’s hard to know how to distill it. Here are some things I know-
-Years of being subjected to masterfully performed gaslighting has left me very unsure of all my own judgements and perceptions of reality.
-Years of being degraded and emasculated when I wanted to discuss my thoughts/feelings, being told that it is unattractive for a man to show “weakness” to his wife, has left me uncertain of when it’s ok to be vulnerable with other people.
-Years of walking on eggshells, trying so hard to do and say everything just right, but knowing that no matter how well I did, the next blow-up/emotional attack was always coming, has left me perpetually anxious, and steeped so heavily in learned helplessness that I often struggle to even feel that I have any control over what happens in my life. I never used to be that way at all.
-Years of having all my contributions and accomplishments minimized or forgotten, and all my imperfections magnified and carefully score-carded, has left me with close to zero sense of self-efficacy.
-Years of living with someone who is intimacy avoidant and uninterested in sex, but being told the whole time that her disinterest is caused by my shortcomings–because I didn’t last long enough in bed, or because I lasted too long in bed (yes, both of those), or because of the stress I was causing her by me not making us enough money (even when I was bringing in over six figures a year), or because I was paying too much attention to (suffocating) her, or because I was not paying enough attention to (neglecting) her– has left my self confidence so damaged that I almost fear being intimate with someone again.
Probably the worst part, though? During the early “idealization” phase of the relationship, she was incredibly jealous and protective of my attention (which at the time I foolishly believed was just because she loved me so much). So, focusing all of my time and attention on her needs, I greatly distanced myself from any male friends I was close to, and completely cut off contact with all of my female friends. Once she flipped me into the devaluation phase, I was left with a partner who had zero interest in me, other than what I could fix or provide for her, and only weak remnants of friendships remained. I was effectively isolated to the point that I spent most of my free time just sitting alone in my basement, wishing things were different.
Isolation is definitely one of my biggest hurdles right now. I’d really like to make some new friends, particularly some female friends since I lost all but one or two, but no clue where to even start. I just really miss having more meaningful conversations and connections with people.
Another hurdle is figuring out how to integrate “what I know to be true” with “what I feel to be true.” For example, I can write down a list of all of my business/financial accomplishments, and objectively say I’ve been successful in that area. I know this to be true. But I do not feel that this is true. I can find endless examples of things I’ve done or experiences I’ve had that show most of the negative feelings I mentioned above are illogical or don’t line up with reality. But again, I still don’t feel that.
I would love any thoughts or advice from anyone who has gone through something similar. What worked? What DIDN’T work? How did you reconnect with yourself? How did you reconnect with other people and build some new meaningful friendships/relationships?
It’s been almost three years since you died. I miss you. Until you died, I can honestly say that I did not carry around much regret, but since you passed I have one big regret. I am so sorry that I could not take better care of you in your old age, when your health was failing. None of us realized how bad you had gotten and I thought you had more time left.
See, you came to visit me for two weeks. Shortly after I left my job to stay at home full time with my then one year old daughter, I had hoped that the visit would go well. We even toured a senior care home that was so nice and I knew we all liked it. But having you here for two weeks was hard. And we found out that since you had a felony on your record, you would not be eligible to live in a nice senior care facility, even though it was so long ago. I was barely keeping it together with my own family. I had been dealing with postpartum anxiety (though I didn’t know what that was at the time), we had just switched to one income, and I was an emotional wreck. I didn’t know that would be the last time I would see you.
When you stayed with us, you were scared to do simple things on your own, like changing the toilet paper roll or putting food on your own dinner plate. It also seemed like many of the usual social graces people use escaped you as I had to remind you of things like using a napkin. We thought you had been spending too much time alone. I knew being in new environments was stressful for you. I panicked when you told me you were starting new medication a few days into the trip. I was afraid that there would be a lag-time until the new meds kicked in and that you might have a manic episode. I was scared, and overwhelmed, and grumpy. Although I had always wanted to take of you, I was afraid of exposing my husband and daughter to your psychotic episodes and just could not handle taking care of you in my home.
After your next breakdown, you went to live with my brother in LA. It was hard to tell over the phone, but he said that you didn’t come back to normal after that one. I know you hated living in the city & in a noisy house with no where to walk to. We didn’t understand why your psychiatrist kept taking you off of your medications, without talking with any of us. I am sad that you died so soon, but I am beyond infuriated with the mental health care system and the shit they put you through all those years. That time, your case workers finally talked you into checking into the behavioral health center, but it was set up for short term care. Your psychatrist took you off of all your psych meds, so the hospital didn’t give you any & you were completely out of it. When I tried to talk to you on the phone you put the receiver inside your mouth. It was impossible to have a conversation. They put you in a wheel chair because you kept falling down. They couldn’t send you home & there were no long term care facilities available for you to go to. We finally fought for you to go to a medical rehab place and argued with them long enough to have you (finally) evaluated by a psychiatrist…which took two weeks. They put you back on psych meds and you improved enough for J to take you home.
But you weren’t all the way better and you had a hard time adjusting to J’s house. He managed to get you into a retirement home that didn’t do a comprehensive background check. When you became agitated and confused again, we thought it was related to your mental health, so J took you to a nearby emergency psychiatric hospital. The doctors there didn’t know you. He waited with you all damn day and they couldn’t tell him how long it would be to get you in to see a doctor. They told him the only way to get you seen was to have you brought in by police. So he called the police, explained the situation and a very understanding cop escorted you in the back of a police car to the hospital. It breaks my heart that he had to put handcuffs on you to walk you into the hospital “in custody.” They explained to you that you hadn’t done anything wrong, but didn’t think you really understood. After all of your experiences,I know that was scary for you and I feel horrible that they had to do that to get you into a doctor. Horrible and pissed beyond belief at this fucked up mental health system that would put a 72 year old man with severe mental health issues though that just to get fucking treated by a doctor. Anyway, it seems like we should have been taking you to a medical doctor, because you died within hours of being checked in. Supposedly they gave you a physical exam, then something to help you sleep because you were tired. When the nurse checked on you 15 minutes later, you were gone.
My other regret is that you had to deal with a system that was so incompetent and frustrating to deal with. That your health care added to the hardships that you faced in life & that I wasn’t a better advocate for your care during your life. I love you and I miss you, and I am glad that you are no longer suffering.
It’s Mother’s Day and I’ve spend most of the day in tears. I ‘d been looking forward to it; even had some cool plans for spending the day with my daughters. Those plans went sideways shortly after breakfast.
I left my husband this week, a planned separation which took several months to execute thanks to our housing situation. As far as our daughters are concerned though, we’re still a team working together to make sure they’re happy and healthy. This week we’ve been ultra-focused on our daughters and the new adjustments.
With all our attention on our children, we didn’t pay much attention to the other members of our household.
Our pets.
When I got home from work on Thursday, I realized one of the dogs hadn’t eaten her breakfast. Not unusual, sometimes she leaves her food until late, so I wasn’t concerned. Friday night, she still hadn’t eaten. This time, I brought the black dog into the light in the kitchen, and took a good look at her. She was gaunt, ribs and spine sticking out alarmingly.
She clearly hadn’t eaten in days.
I called my ex and we agreed to flavor up her food with broth to get her to eat. We assumed it was stress from the separation. I sat, hand feeding the dog until she finally ate her food. Same deal on Saturday and again this morning. The gauntness was less pronounced, but I noticed other symptoms: a little bloating, weakness in one leg.
This morning, my ex came to get the girls for church. As he was petting her neck, he found it. A golf-ball sized lump hiding under her fur. Another closer to the other shoulder.
He took the girls to church while I took the dog to the vet. The emergency vet gave me her early findings. My 9-year old lab has Lymphatic Carcinoma. Cancer. X-rays indicate that it may have already spread to her organs, and possibly bones as well.
Some of you will read this and know the pain and horror I felt. Others, not so much.
It may just be the dog, but it’s my dog, one we raised (along with her litter-mate) as a rescue puppy. A pet who loves me unconditionally, knows when I’m sad and has comforted me upon many occasions. Knowing that I couldn’t put her through chemo brought me to tears.
If it really is cancer, the right, most humane decision is to put her down before she begins to suffer too much.
This cancer diagnosis capped the end of an incredibly horrible week.
A week which included leaving my husband and walking away from my daughters for the first time with the new custody sharing schedule. I kept telling myself it would be just a few days, just like a business trip. It wasn’t though. Being separated from them felt like my heart had been ripped out of my chest.
A week where the bank finally approved our short sale, but gave us a short 30-day deadline to close escrow. A week that saw a solid, approved plan to move into a rental home go awry as the owners of the rental we’re moving into reneged on the deal at the last minute.
A week that ended with learning my daughters and I would be homeless come the 31st.
Ironically, the owners of the rental reneged because we had one too many dogs. A massive wave of guilt washed over me as I wondered if maybe this would allow the deal to go through.
I think the dog knows what’s coming. She’s been rather chipper since we got home from the vet. It’s prompting my 6-year old to try to convince me that the hard lump on her throat is smaller than before so that maybe she doesn’t have to die tomorrow. I’m in one of those horrible waiting periods where I want to convince myself that it’s just a bad infection, one which we can treat with antibiotics and TLC.
Maybe our regular vet will disagree and give us a different diagnosis. But, we have to be prepared for the worst.
