Throughout the past two years I have often heard, “God doesn’t give you more than you can handle.”
Well, I have a bone to pick with God: I am NOT as strong as He thinks I am.
Somehow, I managed to get through my husband’s year long tour in Iraq. I had to. Late in the evening in September 2007, I hugged and kissed my husband, as he rubbed and kissed my h u g epregnant belly and got on a bus. I didn’t know if I would ever see him again. I can still see his big, goofy grin as he smiled and waved good-bye. I stood there, watched the buses pull out into the darkness and I prayed to God that he would come home safely. I prayed that our son would get to meet his Daddy; the same prayer I prayed every day for the next year. I got into the truck, hugely pregnant, and I lost it.
I’m pretty smart. I know that I am grieving. I know that everyone grieves differently. But I’ve had enough. I don’t want the panic attacks that happen for no reason. Panic attacks that I shouldn’t even be getting anymore because I take medication to prevent them.
Tired of being tired because I can’t sleep at night. Every time I close my eyes I see Robert in his crib when I found him, dead from SIDS, or in the hospital on the gurney.
I’m starting to get mad, really mad. Mad at my husband because I had to go through another major event alone. Mad at the Army for not letting Joe be at home for Robert’s birth. I’m mad at God.
This is how my conversations with God have been lately:
Me: “Why did Robert have to die of SIDS?”
God: no response
Me: “Hrmph”
Me: “Guess I should have been more specific when I asked you to bring Joe home safe so Robert could meet him.”
God: no response
Me: “grrrrrr”
Me: “I’m a good Mommy, why do I not to get to have my baby?”
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.
In June of 2017 my daughter was diagnosed with leukemia. She passed away in November. My husband and I have custody of our 11 year old granddaughter. Grieving is taking it’s toll. Last month I was admitted to the hospital for being suicidal.
I think about my daughter all the time. I spent every minute in the hospital with her for 5 months. Telling my granddaughter that her mom was dead was the worst thing I’ve ever had to do. Whenever I go outside for a smoke, I think of my daughter. Whenever I drive the car, it reminds me of the drive to the hospital.
My mind won’t stop thinking suicidal thoughts. My brain constantly hammering me with negative thoughts. I’m hopeless, sad and feel out of my body. I don’t recognize my thoughts or myself. I am so lost. The emptiness is everywhere and I don’t know what to do.
I’ve been treated for depression for years and have had suicidal thoughts the entire time. I spent 2 days in the psych ward. I slept most of the time. I attend an outpatient program and went to a new psychiatrist today. He said my bipolar diagnosis was incorrect and adjusted my medications.
It was a beautiful Memorial Day Weekend a few years ago. I had gone with a good friend to the Indianapolis 500. I was very recently divorced and my son, age 8, was with his dad at an amusement park fairly close to our house. I had just returned to the area when my ex-husband called with a pretty horrifying story. His normally tough-as-nails mother had called him, hysterical, saying something about a pool, but he couldn’t make out anything else she was saying. He was on his way back to town, but in the meantime asked me to look for his mom.
So, I did. I think I knew all along what I would find. I knew my brother and sister-in-law were having a pool installed for my niece and nephew, ages 5 and 8. I stopped at a couple of places where I knew they hung out with no luck, so I headed for the hospital.
I went to the ER desk and told them who I was looking for. Just the last name, mind you. Immediately, the front desk person said I could come in the back. I didn’t know that meant really bad news. I said, “No, I can wait out here, no problem,” but she insisted. Into the back I went, and immediately I was confused. There was my mother-in-law, surprisingly calm, or so it seemed. I went to her, and she said it was my niece, it had been the pool where the football cookout had been held, my niece had been missed but there were too many toys in the pool to see her at the bottom.
A lot of the aftermath is a blur now. I went to my brother and sister-in-law, who were holding my niece’s body. She looked perfect and beautiful, but blue. I remember my sister-in-law looking at her almost reverently. I remember sitting on the curb outside the ER, waiting for my ex-husband to get there so I could tell him. I remember my son’s horrified face as he saw her as it sunk in that he would never argue with her again over who got the middle part of the back seat. And I remember the feeling of absolute hopelessness that I couldn’t protect him from that, or from the other ugly things in life.
That night, something broke inside me. I went to bed that night knowing things would not be better in the morning. My sister-in-law’s wails echoing in my ears.
It’s been years now. My sister and brother-in-law are doing as well as I think anyone could and I was diagnosed with PTSD. I thought I had a good handle on it, but I got a comment from someone that brought it all back. This person told me she hoped someone in my family, like my child, got sick so I could understand why she missed a ton of work.
After going through what was quite possibly the most difficult year I’ve had so far, Things are finally settling down.
I’ve lost a child, was denied access to a child and have fought all year through to get it back.
I faced some of the most horrific gas lighting abuse imaginable, I work in a position of trust and have done so for many years and my former abuser decided that they would try and get me fired with some of the worst false accusations you could imagine.
I’m now at a point where child protection services no longer believe my former abuser and have some solid boundaries in place to protect myself.
They tried so hard to pretend they were the victim whilst I watched them send constant mixed messages, cheat on me, control every aspect of my hard earned wages, my professional life and personal life alike, and I watched my friends disappear everyday, then when enough of my support had gone they turned on my family. They were constantly redirecting the blame for everything onto me and making me feel responsible for every bad situation they created by abusing others as well.
The final straw was when I recognized that they were trying to set me up to make the biggest move of gas lighting abuse imaginable, I’ll be the first to admit that it didn’t go as far as accusing me of Satan worship or cults where children were sacrificed, but it got pretty close and was all to try and control and limit my access to my child.
I then identified defining factors of Munchhausen by proxy in their behavior and had no choice but to try and protect my child as best as I could whilst fighting off these organizations that she used to further victimize me.
My child was ill, in accident and emergency or was at emergency appointments almost every week. I noticed that the universal factor was that my former abuser would always press for me to have contact with HER, not my child. When I tried to be there for my child without seeing them even under the supervision of medical professionals, I was told that it’s unacceptable and I have to see my former abuser.
I am still clearing up the shrapnel in my life but it’s back.
MY LIFE.
I’ve been studying the past year to help real victims of domestic violence as a McKensies friend, as well as help both mothers and fathers hold onto their children when courts become involved, offer practical and emotional support for the men women and children whilst maintaining my own contact with my child and jumping through those hoops.
I’m in a fairly successful band and still retain my job in a position of trust, I’ve trained as a volunteer children’s speech therapist and rebuilt all of those broken bridges from my friends and family and I’ve brushed up on my cooking skills a great deal, and I still donate blood as often as possible.
If I had tried any of this over the past years during my victimization I would of crumbled and broke under the pressure. But now, now I can do all of this with an ease that belies my former victimization. Now it’s all as natural as breathing to me.
I received a shock on valentines day, It was an act that helped me realize how far I’ve come and how much stronger I am.
My former abuser sent me a valentines card…….
Are they sure about that?
I suspect that they have either the final screw has come loose, lost the ability to exert their manipulation of others and want to try again with me, or want to try and set me up again.
Well, Not Gonna Happen.
I did not build all of this to watch them break it again.
Not this time.
Find someone else to fall victim to you’re disillusion, faux perception and toxic miasma of a personality because I am free.
Thank you to The Band and Aunt Becky
I’m sorry for my silence since my last post I’ve just been so busy.
First, people are afraid of what to say, and often say nothing. This is a mistake. Many people are afraid to bring up the deceased child, fearing it will open wounds and raw feelings. But in my opinion the hardest thing is when people don’t talk about Maddie. It feels like she was never here, and this is what is heartbreaking. It is nice when people say, “I thought of Maddie today,” of “I saw a kid in a dress like the one Maddie wore at whatever today.” Or “I miss Maddie.” These things help, not hurt. Make us feel she is not forgotten. Sending a keepsake with the child’s photo or name, things that help her be tangibly remembered are nice. We have received AMAZING things and we cherish everything.
Six years ago, one of my friends lost her father. I was living across the country from her, and I was terrified. I felt guilty that I had my dad and she didn’t. So I didn’t say anything, and I ruined our friendship for a while. I am very lucky she gave me another chance. She has been there for me since Maddie passed away. I have horrible regret about the whole thing – all I had to do was call her and say, “I’m so sorry.”
Religion is a potentially explosive way to comfort. Unless you absolutely know 100% percent the person will be comforted by mentions of faith, don’t go there. Religion is a very complicated thing in the wake of a child’s death, and they may be angry at God or confused as to how to incorporate the death of a child into the religion that they have known to have their best interests in mind. Even someone you know to be intensely religious may be having a crisis of faith in the wake of a child’s death, and could be angered/saddened by mention of religion. Especially stay away from, “God wanted her more than you,” or “God needed her more,” etc.
I don’t care if it is the all powerful creator of the universe, you don’t tell any Mama that anyone wants her baby more than she does.
So many people hate seeing their loved one in such pain and want to fix it. Consequentially, they start talking about how you have to move on, that you will see them again, the child is with God, it will get better in time, etc. All things they think will “fix it.” Don’t try to do this. Follow the lead of the parents. Discuss what they want…if they go to those places you can discuss those things, but don’t try to steer it there. Sometimes I want to talk about Maddie and the unfairness of it all, and other times I want to hear funny stories or talk about reality TV.
Don’t be afraid to show emotion. Many people feel they have to be strong for their friends, that they can’t cry or show emotion. I don’t think that is true. You can be strong AND be emotional. If tears come, don’t fight them. This shows your friends that you, too, are crushed and sad and lost.
Address the horror. People often worry about addressing how awful the situation is, but the parents want to hear that people get the hell they are in. The parents feel alone when they don’t think people understand how awful this is. Saying things like, “This is the worst thing. I am so sorry and sad that it had to happen to you and your child,” helps.
Food is very helpful. The last thing you want to do when mourning is worry about eating. There are always people around after a death, and the last thing you want to think about is feeding them. Mike and I never would have eaten if food hadn’t been sent to us. A gift of food also tells the parents they are loved.
Say or express something you never have before. If you have never told the person that you love them, come right out and tell them that you love them. If you’ve never held their hand, hold their hand. Give hugs. These expressions mean a lot.
Finally, my biggest advice is to not be afraid to take initiative. We often say, “let me know what I can do,” in a situation like this. Well, I can tell you that Mike and I had no idea what we needed. We were so lucky that we had friends and family rally together and just take care of things. A few came to town to help out. One friend organized food, another cleaned my house, two bought the clothes Mike and I wore to the funeral, one put together Maddie’s slide show, a few organized the reception after her service. I could go on and on. I didn’t have to worry about anything because I knew my friends and family would handle it.
Be there for your friends. Call, email, text. Tell them they don’t have to respond. Let them know you are thinking of them, and their child, all the time. Don’t drop away after the funeral – that’s when they’ll need you the most. Be the kind of friend that you would want to have.
