I don’t remember when reporting of suspected abuse and threat assessments (e.g., suicide risk identifications) became mandatory for educators and counselors. It was before I became a parent, I know that much, and it dawned on me a long time ago that there were probably plenty of reports that resulted from misunderstandings.
About a month ago, while we were in the middle of Princess’ most troubling days, while we struggled to identify and treat her emerging bipolar tendencies, our son, Hoss, ran away from his school and was brought back by the county police. It’s been a long time since he ran away like that, but it brought back memories of the tough times before he was diagnosed with his mood disorder.
One of these elopement incidents was the final thing that sent him to the psychiatric hospital back in the day, and that he’d gone all of last school year without ever feeling the need to escape like that made me feel like we’d made serious progress. Last month’s bolting was not as serious as what we used to see, but he did leave the property.
When the police officer brought him back to the school, they said he’d expressed that he’d wanted to die. As a result, despite the assurances of the school staff with whom Hoss has a history (principal, counselor, psychologist) that he was not actually a danger to himself or others, the police informed us that they would be taking him to the ER for a psychiatric consult. I was told that I would not be allowed to go along until I had spoken with the Mobile Crisis Team.
I spent time with the MCT explaining all of the steps I go through to care for my children and myself (outpatient therapies for the children, family therapy with a social worker with whom all of the family members are comfortable, open lines of communication with the schools, medication monitoring all around) with a response that roughly translated to:
“Okay. That’s exactly what we were going to recommend, so keep on keeping on.”
My husband went to the ER to stay with Hoss, and the evaluation indicated that Hoss’ “I wish someone would just kill me,” was not actually a cry for help, but rather a misstated outburst that is not all that unusual for a nine-year-old boy with ADHD. During the next therapy session, Hoss got an opportunity to talk about how upset he was that he’d been forced to go to the ER when he’d wanted to stay with his sister and I.
While Princess was in the day hospital program a few weeks ago in preparation for the transition back to school (now that we’ve gotten her medication properly titrated), she spoke of her brother’s boundary issues, and how he’s gotten in trouble the weekend before for not keeping his hands to himself.
Part of that boundary crossing included trying to tickle her all over, and missing her stomach by hitting a bit further south. Because we are working with Hoss on respecting personal space as well as just plain leaving his sister alone sometimes, he had to process what he’d done and he had consequences for not acting as he was supposed to.
Princess accepted his apology, since he’d properly identified what he’d done wrong and what he should have done instead. I didn’t hear about the incident until days later, since it happened while I was out of the house and it was no longer on everyone’s mind by the time I got home that evening.
However, the hospital reported the incident to the county, who interviewed all three of my children.
The end result of the interviews (from the point of view of the police and social worker) was that there was no criminal activity or additional cause for concern.
The end result from the point of view of my children was slightly different- Princess feels bad that she got her brother in trouble, Hoss is irritated and slightly grossed out that he “…had to look at pictures of private parts! Even girl ones!” and Little Joe doesn’t understand why he had to answer a whole bunch of questions about body parts and our family and stuff.
I know that mandatory reporting has resulted in abuse being caught before more damage can be done. I know that conducting threat assessments in elementary school may mean that we have fewer young children reacting to their stress by harming or killing themselves.
I understand this, and of course I want those bad things prevented.
I’m just struggling with how this has put me under a microscope when, according to the mental health and educational professionals who know me and my family, I’m one of the good guys
A wise woman told me to write up my story and tell the hell out of it. So, here I am.
Sometimes, I feel like I have the only kid like mine. My son was diagnosed between 3 and 4. He is one of 3 I have, with special needs. For the time being, I’m focusing on my oldest.
We knew something was not right with him. He threw an 80 lb. mattress across the room at me. How does a 3 year old do that? He never slept. He would have meltdowns and throw things at me. I have gotten black eyes from everything from a book to an army boot to the back of the head.
Thankfully, I had a wonderful doctor tell me how to deal with the meltdowns and those came less and less often. However, he would wander. We had two incredibly scary events where he wandered off when he was 5, but he had angels and off duty police officers watching out for him.
When we got the Autism diagnosis, I knew nothing about Autism. Most people equate it to the movie Rain Man. I had never seen the movie so I had no clue. All I knew was Doug Flutie, an NFL football player, had a cereal that’s proceeds went to autism awareness. The only reason I knew that is because I saw the commercial once while my husband was watching a game. That’s all I knew. Nothing else.
So, the journey was rocky and hard. The first year my husband was stationed in Korea, so he was not around to learn what I did.
I relied on “friends” I thought that I had to help. Instead, I got investigated by CPS (child protective services) for making everything up. The only thing that was founded was that I was stressed. (Gee no idea why???)
My son’s first year in school was horrible. Open classroom and he would have meltdowns. They did not want to deal with him, so 5 out of 5 days he went to school, he was sent home early. I had no idea what I was supposed to be doing or how the school should have been handling him.
Thankfully, the school he was moved to had a wonderful Spec Ed teacher that knew what she was doing, to this day, I will still kiss the ground that she walks on.
He improved and stayed in school. Had messy moods and lack of sleeping so we had to join the medicine bus. So many doctors and specialists, “you should do this” and “don’t do that and this and that.”
The kid is a loving, sweet amazing kid. He has a hard time showing that. He has many co-morbidities along with his autism. ADHD, ODD, Anxiety, depression, hypermobility, OCD, etc.
In our journey with him, we realized he wasn’t like most kids with autism. So many can use an iPad and it’s nothing. A phone and no problem. With my son, he can not tell the difference between reality and what’s on the iPad or phone. We tried. We tried so many times, so he could be like his friends or brothers. But it ultimately turned out so, so, so, so bad.
When he was 11 a child that bullied him at school told him that triple x rated stuff on the internet was bad and if you looked at it you were super special because not everyone’s computer can look at it. Ever since that day, my son has been fixated on it. At 11 he had no idea what it was, just that it was special and not everyone could see it. As he grew into puberty it got worse and worse. I still don’t think he knows exactly what its supposed to mean to a person, because his thinking age is around 10, but he knows its bad, he’s told his therapist it’s bad. He’s tried to look at it on the internet at school.
We had everything on our cable blocked so that he could not watch it or order it and somehow he got around it and we had a $900 bill. (I’m still drinking coffee to cope with that one)
Now he’s in a dark, dark place. He’s obsessed with death. He writes and writes and writes about death scenes. Then he tears them up. He talked to his therapist, but he sees no problem. We can not even let this child watch cop TV shows it’s that bad. Nothing to do with magic, or death.
My husband and I have been watching his behavior as of the last 2-3 months and I’m not liking what I see. Neither does my husband.
His moods are very erratic. One minute he’s happy, the next he’s angry and ready to fight. Then he’s happy. (Note: he has not touched a soul, just has gotten angry with words) These mood changes make me think he’s bipolar. We were warned that he probably was a few years ago. We knew it was coming.
Now we’re questioning the doctor, because my husband and I are so completely and mentally drained from dealing with his moods and trying to keep his brothers from upsetting him. The doctor is trying to tell us that he’s making it all up and that we just have to deal with it. My first thought, no lie, was, “The fuck you mean deal with it? I’ve BEEN living with it! We came to you for help on how to KEEP dealing with it, asshole!” I, of course, did not say that, because I was too tired.
This kid has been in-patient 7, lost count after that, times for being bullied and being suicidal. I’m scared to death something is going to set him off. Granted all sharp instruments are kept under lock and key. We continue to try and understand what is going on, but our son can not tell us because he does not remember the mood swings.
His doctor said, because he does not feel bad for being angry and mean, he is not bipolar. DUDE, he’s autistic, he’s not going to feel bad.
I had 2 major surgeries and he bumped what I had surgery on, I started crying and he didn’t give two craps. That does not mean he’s not bipolar!
It’s hard to keep him busy. He gets bored with puzzles and crosswords and TV, because we have seriously toned down everything that he can watch. I’m just at a loss on where I should go from here. There’s probably a lot I left out of his story, I’m sorry for that.
Here’s another twist on his story. He legit thinks he’s from another dimension. He thinks he is a female from another dimension, that he will leave to find when he is 18 years old. There are artifacts all over the world that he has to collect in order to remain safe in this other dimension. He thinks that the here and now is just temporary. Because of his beliefs with this, he can not watch or read anything that involves fantasy. Because he can not and will not be able to tell the difference between what is real and what is not.
His therapist and I had a long talk today about it. I had to stop from bursting into tears, because I have never heard of another child like mine. I explained that to him and asked what do I do. He said I do what I’m doing… Be mom.
It did not help when he said that in the 13 years that he had been doing what he does, he had never met another kid like my son.
Sometimes, being a mom is rough as hell when it feels like no matter what you do, it’s out of control. You know all those books you read before you have kids? I never read any chapters on Autism or special needs and I sure as hell never read any on how to deal with this kind of life for your child.
I guess I should add that I am dealing with my own depression and anxiety right now. My anxiety is off the charts and my shrink threw me into counseling. Didn’t even ask just threw me in. I also have a chronic illness and it flares up in the form of pain when I’m extremely stressed out, the last 3 months I’ve gotten little relief.
It’s sad to say at this point, I’ll deal with me as it comes. I just want my son to be okay. I know I need to worry about me, too. If he is okay, then I can be okay.
Basically, I’m writing this because I just need to know I’m not alone. I’m so tired. My gut instinct with this kid is never wrong. My gut says he needs help with this anger thing and his doctor is being stupid.
Mary sat there with her eyes rolling back into her head; her mouth foaming a bit. Her newborn baby was sleeping in her arms while she jostled him each time she would nod out and try to keep focused.
She looks up at me and says, “you just want to take my baby away from me. All of you Social Workers are the same.”
I stare blankly. I am new at this, but I can’t let Mary know that. I am just 25 years old, and she is well into her 40′s. She is not new at this, not by along shot.
Little does she know it isn’t her newborn I am after, it is her disease.
“Do you have any other kids Mary?” I ask, as I fill out her assessment.
“Yeah. 4. They all were taken away from me because people like you don’t think I care about my kids. People like you think I have no heart, and all I care about is drugs.”
I clarify for her that people like me what to see her clean, healthy, and safe.
After an hour long assessment I learned Mary has been using for more than ten years. She doesn’t even remember how old she was when she started, but she does remember the first time she sold her body for a hit of heroin. She tried rehab too many times to count, and currently she is high on the doctor-prescribed methadone mixed with a hit of heroin.
The air is thick with concerns, and I am forced to send her back out on the street with her newborn wondering if she has a warm place to stay tonight. I asked her and she laughed at me and said, “yes where else would I bring this baby?”
She still thinks I want her baby. She doesn’t know I want her disease.
I want Mary to claim war on it. I want her to fight with me. I want her to have the ability to see herself as more then just a drug addict. I want her to see herself not as a prostituting drug whore, but as a loving Mom.
It is clear she is an addict, but it is also clear to me she is a loving Mom as well (the baby is swaddled in a blanket, fed, and she is cooing at him. She bathes him in kisses, and opens her diaper bag for a pacifier). That baby deserves his Mother to fight the war. That baby deserves a better life then getting passed around the drug world, because if he stays he will never get out.
I really don’t want to take her baby.
After a few more meetings and evaluations, Mary refuses my advice to go into family residential treatment. It is the only way for her to keep her newborn son, and for them both to be safe. She isn’t ready for the fight. Her disease is telling her that it is more important then her kids. Her disease is running Mary.
Mary isn’t fighting because she hasn’t “hit bottom” or reclaimed the right to her body, her life, her choices.
By now I am sure you know the outcome, Mary lost her baby to the state. Her 5th child to the system. I was just another Social Worker that had to report it. I was, what she said I was, a baby snatcher. I wish I could explain why, but nothing I said comforted her. She refused treatment, and I, ethically, could not let her continue to take care of her 1 month old on the streets she sells herself and buys drugs on.
You may be reading this and thinking “I’ll never get this low,” “This isn’t me” “my story is different” or “it hasn’t consumed me” “I have control of it”.
Don’t fool yourself, Mary thought all of these things as well.
Addiction is all the same disease.
It will consume you if you don’t choose to consume it. It will make you give it everything. It can push you to do things you never imagined you be willing to do. It will cost you not only years of your life, but your loved ones. It will take all of who you are, and what makes you “YOU”, and give it a slow and painful death.
It is violent, and abusive, and it needs to stop.
As a professional in the field of Addiction I can tell you this: You can not do it alone. You shouldn’t have to do it alone. If you needed surgery to remove tumor, do you take the scalpel and do it yourself? No. It is the same thing my friend, the VERY same thing.
A disease is a disease is a disease.
We (professionals) aren’t here to take your babies. We aren’t here to pass judgment and tell you how bad you are. We didn’t get a degree in this to make fun of you, or to watch you pee in a cup.
We did it to help you fight. We are here to reclaim you.
I am no longer 25 years old, and I may not be in the business of rehab anymore (instead I am a stay at home, blogging Mom). However, Mary, and all the other people I sat with in various rooms at various locations will always be in my heart.
I will always feel like I am a warrior against Addiction.
I will always want to win the war, support addicts and their families. And I am here to tell you….
you are not alone with that monster.
Don’t let the Addiction win.
Reclaim yourself, your life, and what you rightly deserve.
Seek help, and fight the war.
Last June, I left my husband with the children at the request of social services. As time went by, I began to go through the different stages of grief. First of all, I didn’t feel anything about the abuse that my husband had given me. Secondly, I felt grief, then I felt angry and blamed him for the fact that the children had been removed from my care and put in the care of my parents.
Then I felt unsure. Had what he’d done to me actually been abuse? Was the way I had reacted at times a case of domestic violence? After all, I did throw a cup of tea at him in the middle of an argument. Did that constitute abuse?
When I first left my husband, he telephoned me often to beg me to go back. He would cry about how sorry he was. Every time I saw him at meetings with social services, he would cling to me like a child who was petrified that his mother was going to abandon him. Later, he finally began to accept that we were separate and that I really didn’t want to go back. Then, social services told us that neither of us had any hope of getting our children back because they said that the volatility of our relationship had emotionally abused them. This is untrue. We cared for our children to the best of our ability, and loved them so much that it hurt.
The children’s social worker is beligerent and only wants to tear families apart rather than putting them together. My husband suggested that if we couldn’t have the children, we should at least have each other. I told him that I had to think about it before I decided what to do. The more I thought about it, the more it made sense. Maybe we should try again. He had changed a lot in the space of nine months. Maybe things could be better this time. We’d both learned so much about ourselves and each other.
At the end of March, I moved back in with my husband, much to the chagrin of social services. They made a point of mentioning it in their reports that it was a sign that we put our relationship before our children. But how can we care for our children if our relationship is fractured and broken? Surely, if we fix our relationship, we’ll be able to better care for the children. After all, one of the reasons they took the children away from us was because of our relationship problems.
I’ve been back now for two months, six weeks of which I spent on the sofa with a broken ankle. When I went to the emergency room with my broken leg, someone commented to me that my husband treated me like a princess. And do you know what? He has. He has spent the last six weeks waiting on me hand and foot, while also redecorating our new bedroom. He went out to buy me wine, gum, and chocolate whenever I asked him to. But …part of me is still thinking maybe he’ll change back. I know that my family is scared of that. When I broke my leg, my father asked me if I’d really fallen down stairs or if I’d been pushed by my husband.
I’m scared to have sex with my husband because I’m scared of being raped again. Maybe my husband has really changed this time, but maybe he hasn’t. I’m so scared that he will go back to the way he was. Maybe my fears are the consequence of our volatile relationship. I don’t know. What do you think?
For many, becoming a parent is an inherent, indescribable experience that subconsciously transforms you into a fiercely protect caregiver. When your child becomes ill, your natural inclination is to seek medical attention and abide by the doctor’s orders. However, if the illness is caused by a complex medical condition, sometimes answers are not as easy to find. There comes a point in which, after numerous attempts to find the answer, the burden of proof appears to be placed upon the families or even the patient themselves.
With the embattled medical negligence case between the Pelletier family, Boston Children’s Hospital and Massachusetts Department of Child and Family Services (DCF), it brings to light the struggles of treating a complex and poorly understood medical condition, patient and family rights, and quality of life issues. I am not a medical expert, I am not a lawyer, and I do not know the Pelletier family. I am someone who struggles with a rare medical disorder, and thirty years ago I was Justina Pelletier.
In May of 1984, after numerous hospitalizations, tests, visits with specialists and multiple incidents of respiratory arrest, local doctors in collaboration with Boston Children’s Hospital were out of answers and filed a complaint against my parents with DCF. The complaint was based on unsubstantiated claims by someone who claimed to be an “acquaintance.” There was no home visit, no interview, not even a second opinion from an unaffiliated medical expert. My parents were accused of medical negligence even though they followed the advice of the pediatrician and the hospital’s attending physician.
Reading the report, I found it not only to be inflammatory but completely devoid of any factual evidence. There was no mediation or care plan developed between the hospital and my family, only threats echoed through the Department of Children and Family Services. When my father questioned the DCF case manager on the legitimacy of the accusations, her response was that she read the report and “just knew.” While I understand the intended purpose of these investigations is for the best interests of the child, that is not what happened with my family and it doesn’t appear to be the case for the Pelletier’s.
When you look at the Justina Pelletier case, it is mind-boggling; it feels like there has to be something more to the story that’s not being told. How could a world-renowned hospital and an agency dedicating to protecting children be responsible for the implied child abuse and child neglect? If you do not have firsthand experience, it’s hard to imagine. For my family and I however, we feel overwhelming compassion after every press release for Justina Pelletier.
Luckily in my case, my parents were able to reach an outside specialist who performed an emergency bronchoscopy – a procedure Children’s Hospital was capable of but failed to do – and located the source of my life-threatening respiratory distress. A rare structural birth defect called an “innominate artery” caused my aorta to cross over my trachea, crushing it, and in conjunction with a smaller lung defect would have cost me my life had my parents not pushed for more answers. Approximately one month following the DCF investigation, surpassing typical life expectancy for the defect, I had lifesaving cardiac surgery at Massachusetts Eye and Ear Infirmary, a world-renowned teaching and surgical facilities for disorders of the head, neck and chest. Had the Department of Children and Family prevailed, it would’ve killed me.
My health struggles did not end following the surgery. After twenty years of multiple surgeries, injuries, and complications, I was diagnosed with ehlers-danlos syndrome. The genetic specialists at Brigham and Women’s Hospital of Boston compared my medical history and, combined with my clinical presentation decided that I fit the profile for the hyper mobility sub-type of Ehlers-Danlos syndrome. My defective collagen and its systemic effects validated my experiences and helped me build a care plan with my team of specialists. In doing so, it helps ensure the best quality of life possible. Justina Pelletier and all patients with complex medical problems deserve this.
“Doctor shopping” is a term thrown around when a person seeks answers from multiple providers or alternate treatment. Being proactive and locating appropriate treatment is not doctor shopping. Complex medical conditions do not equate psychological imbalance or parental medical negligence.
Now that the state of Massachusetts has been granted permanent custody of fifteen-year old Justina, the irony is inescapable. If Justina’s condition is purely psychosomatic, as suggested by Boston Children’s Hospital, and her parents are to blame? Why does she continue to deteriorate whilst presenting with tangible physical symptoms? If her parents have not been permitted contact with her, surely there has to be a more logical answer. The fact of the matter is Justina Pelletier is being punished for being ill while the witch-hunt against her family plays out on a national platform.
My hope is that Justina is as fortunate as I was and receives the medical care she so desperately needs … before it’s too late.