Several years ago, a mother in my state wrote an anonymous post about her child being the next school shooter. It took a post like that for a doctor in another state to reach out and help her child. Yet no change took place in Idaho. Our mental health system here is a broken wreck, we know it, they know it, but no one is doing anything about it. It’s been years, yet here we are with the same broken system. A young girl, a 6th grader became the next school shooter. Thankfully for her, no one died. I sit here wondering what help she will truly be given and what changes won’t take place because of it.
I sit here and wonder if my child will be next.
Did you know the state of Idaho does not have ONE anger management class or sessions for our youth? Not one, so they say. My child has actually reached out and asked for help with this anger that comes out of nowhere and rages out of control. He hates it, we hate it, but how do you control it? How do you stop it from unleashing in the first place? Doctors want to throw anti-psychotic after anti-psychotic at them but it does NOTHING to help the child. My child doesn’t do well on meds. Period. We’ve tried so many of there damn drugs but not one has helped. He lives with extreme over the top anxiety and panic attacks and nothing has touched it. It took YEARS to even try a fast acting anxiety med in the first place because they were too concerned with addiction than helping my child.
So my child suffered for so long without help that it’s become out of control and beyond where it needs to be due to lack of help in the beginning when we needed it most. Addiction is more concerning to them than the actual wellbeing of your child NOW. Off label meds are used more often than medications meant for the issue to begin with.
One of the biggest issues with long term drugs is that it can weeks to months to be effective. So they trial a med, fight off the side effects, only to have it be ineffective or cause more problems only to finally stop it and trial another, and another and another, to no avail. At some point the child will refuse meds. And then rage at the worthless system he finds himself under.
The state of Idaho has no real respite for older kids. I am just now learning of one on the east side of our state yet no one had mentioned it to me before. Why don’t we have one in the most populated area of our state? There are plenty of respite ideas for those with young kids but not a damn true respite for our older teens that benefit both the child and the parents. So the government contracted with the Hay’s house. A local shelter in Boise that takes kids. Apparently, paying good money from the government of Idaho to the Hay’s house to provide the needed respite for our kids in the system. Guess what? They denied my kid.
After taking weeks to even try and get someone to call me back and then go through the application process and set up a tour. I simply got a phone call telling me they don’t take kids with autism. They also don’t take kids with health issues even though my son doesn’t have any needed equipment or really any special care beyond, let him rest if he needs to and don’t require physical activity if he’s hurting. So why are they getting funds from the government, likely from us tax payers to provide a service, ON PAPER, that they are refusing to provide? It’s funny and ironic that the court order in my kids case simply says, “keep seeking respite…” Yup, we’ll keep seeking but never find.
And they wonder why kids finally explode. They wonder why suicide rates are high and ever climbing. They wonder why kids take their aggression out as a school shooter. I wonder what help the poor girl didn’t get and how long they battled the system trying to find it before she finally snapped. So what change did this incident bring about? Likely not a damn thing.
Respite for teens should provide a safe place for teens to have both enjoyment and a break from their families while providing a break to the parents as well. If one is suffering, the other will too. So if a kid goes to a place like Hay’s house and can’t even keep his phone or certain personal affects while there, please explain how that is not much different from detention? So even if he did get accepted, I can only imagine the anxiety in the back of my mind worrying about how frustrated my kid would be not having access to his basic personal affects while supposedly getting a break from the household… I honestly don’t think that would provide a real sense of relief, ie, respite. But it would be better than nothing…. until we can one day get real services and respite for our teens. If it’s not too late.
I’m so disgruntled by our system, our state, our health care. They are admittedly reactive and not preventative. But even their reactive measures are subpar, always shoving a square peg into a round hole and not getting results while continuing to try.
I would love to start a non profit and create a teen respite center in our state. A center with input from the very teens who would utilize it. But how do I do that? I’m just a disabled mom with ideas, a lack of education in that area, and very little energy to walk on my own two legs. But we need it. We need it desperately as do thousands of other kids in our state who are suffering like my kid is, just like the parents who struggle and need that break but are too afraid to ask for help or have asked but haven’t been heard. My ideas are endless on this program I’d like to create.
I’d also like to fix the broken juvenile justice/mental health system in our state. A REAL solution that would benefit our children that really does look a lot like common sense but our system is stagnant, apparently slow to change and how does one be the voice of change? I HAVE A SOLUTION!! But my voice travels out and fades away and doesn’t reach the ears of those who might actually be willing to make a difference. How can I be heard? How can I share my ideas that would help our kids in at least two areas where our state has failed? I need legs. I need someone to be those legs to reach the people necessary and then convince them to simply start by listening. Listen to my proposal and lets start working on solutions rather than wait till something even more drastic takes place that finally gets someone’s attention.
Will my kid be next?
Update to this post:
Not long after writing this post, I argued with his current psychiatrist about the state of affairs in our state and his inability to handle treating my son’s anxiety with a simple medication to do just that. He told me they don’t really offer those meds to kids and he didn’t feel comfortable doing so. I clearly let him know how unacceptable that is to me and how he’s only harming my child by withholding a necessary medicine he truly needed. I also told him he needed a real doctor to evaluate his physical health issues as I felt his underlying issue is not so much mental health as it is a physical issue exacerbating it, likely genetic affecting my kid and that we can’t seem to get help to diagnose him. His psych suggested sending him to Seattle’s Children where they have a good comprehensive medical clinic. I told him I would be very interested in that. He then went on to mention another clinic in Utah for mood disorders and medicine resistant kids. I voiced my opinion and told him I would like to go to Seattle’s children. He sent the referral to the mood clinic instead.
Why did he bother asking me or telling me about both places if he had his mind made up and didn’t accept my input? A month later I got a call from the mood center to schedule an appointment for my child. What I found out shocked me to my core. His psychiatrist sent the referral for him to get shock therapy. I don’t know about you, but I’ve researched that and let me tell you, the horrific stories coming out of shock therapy will blow your mind. These kid can come out with serious brain damage and permanent memory loss. So essentially, they wanted to shock the anxiety and depression out of my child rather than investigate the root cause of his physical health issues that affect him in ways that present like mental health. I would never ever risk harming my child or risk changing his personality all to avoid some meltdowns when he cycles through them after feeling trapped in his cage for being stuck without recourses. What kind of doctor orders such a thing without figuring out the health issues affecting him? I was so appalled. We never went back. FYI, the first thing mentioned before attempting such a dangerous procedure is to make sure there are not any physical health issues affecting the patient as well as a list of issues that would be contraindicative of him receiving those treatments which he has several of.
What people fail to understand as they’re simply ignorant to the mysteries of the human body, is that when mental health issues appear in someone, it is always imperative to rule out a physiological cause BEFORE labeling and treating a person with psychotropic drugs. But we’ve gone away from that for a long time now. Pysch meds are handed out like candy. Are there any discussions about the drugs kids are on when those violent encounters do happen? Do we ever talk about the damage those drugs can cause kids? Did you know many of them are not even for kids but adults over 18? And yet they hand them out like candy.
Twenty two years after I first got ill, I finally got diagnosed with a very rare genetic disease. Guess what? This genetic disease can present in kids as a mental health issues when their bodies are not being regulated by the diet that affects them as they don’t break down certain products in the body which builds up and makes them sick. A genetic disease I might have very well passed on to my children as their health symptoms are similar to mine in many ways. And yet, instead of those doctors testing him or looking into these diseases, they rather shock his brain and cause head trauma. Instead of giving a fast acting anxiety med to calm him when he’s feeling panic, they rather give him drugs that caused him harm and do nothing for anxiety. I truly hate our system.
Do I really think my kid would actually be the next shooter? No. But I see how it can happen in our world. I see how lack of real medical help, lack of appropriate prescriptions and a serious lack of services can lead to that very thing. And that’s not even talking about those coming from a troubled background who may also suffer from similar issues but don’t have parents fighting for them like I fight for my son. I feel even worse for them. At least my kid has all the love in the world. He’s also a great kid. He’s intelligent, helpful, intuitive, and brilliant in so many ways. He’s just lacking the proper medical care, the lack of services, and lack of outlets he needs while living with a disabled mom who can’t help him in the ways in which he needs as I’m still seeking help and services for myself as well. He needs a mentor, a physical trainer, someone to be the friend that also handles the adult responsibilities we’ve been unable to consistently provide him due to illness and his father working nearly every day of the week.
We finally found a psychiatrist to evaluate my child who has been worth every bit of the time and travel it takes to get to him. He is brilliant. He also has worked with many kids with rare diseases. He didn’t bat an eye at prescribing the appropriate medication my son needed. He is concerned with the here and now and not some future fear of addiction that holds him back from actually treating my child. He believes me. He also believes absolutely that my son is dealing with a rare disease. And this was before I got diagnosed. He’s been fantastic at signing off on testing for my son. He listens. My son absolutely does well at those appointments. He gets to see the side of my son that I know and not the side of the anxious angry teen that is tired of the medical system and tired of doctors dismissing him and treating him like he doesn’t matter. He looks forward to those appointments and feels respected. Maybe other doctors should take a page from this one’s play book.
In my search to get my son tested and treated for his physical health issues, his prior family doctor refused to write referrals needed for my son. He refused to reevaluate my son’s liver when it showed enlargement on his MRI, completely dismissing that finding and telling us not to worry about it. He’s suffered abdominal pain for nearly 3 years now. FYI, liver involvement is part of the disease I suffer with. It can absolutely be fatal. He dragged his feet in getting him a referral to the university hospital. 4 months of arguing back and forth. He deleted all our medical emails from the system when I complained to management about the behavior and lack of care from this doctor. Isn’t that illegal? Major red flag. He insinuated I was a Munchausen mom and told me to my face that what my son has was NOT a genetic problem and I’d have to come to terms with the fact that his issues were likely all mental health. That was last year, the last time I spoke with him. He was wrong. How sorely wrong and his ignorance has caused harm to my child. And they wonder why my kid hates doctors.
The child I mentioned at the very beginning of this blog who was diagnosed by a doctor out of state, well his mother wrote a blog about her son being the next school shooter. She was desperate and reaching the end of her rope seeking medical help for her child as we seem stuck in a state with very ignorant medical personnel who are not helping our children. I’m positive there are some good ones here, good luck getting in to see them. That mother reached out in the only other way she knew how, venting her frustrations for the world to read and it took that level of desperation for someone to finally listen. Someone who read her post and recognized the symptoms in her child. He finally got diagnosed with a condition that isn’t even rare but our Idaho doctors couldn’t seem to recognize. He finally got the care and help he needed and is doing very well to this day.
I guess in my own way, I felt like I was doing the same in highlighting what a truly broken system we have. But there are also other things people misunderstand. Words and actions are two very different things and context means everything. I had a relative who has no interaction with my child, who lives in a completely different state and based on a conversation from another relative with her own mental health issues, he accused my child of being the next school shooter. He accused me of not doing enough to help my son. He accused me of being a parent who would contribute to causing an act so violent and ugly. Didn’t matter that I showed him a copy of his medical record discussing these issues showing him MY child is being taken care of to the best of my ability AND these conversations are discussed with his doctor. Didn’t matter that MY child doesn’t have the qualities involved in psychopathic behavior. Didn’t matter what I said at all, he simply chose to insert his own beliefs and opinions about my child making accusations and judgements without context, facts, or even truly knowing my kid like I do. He was angry I didn’t send him to shock therapy. He thinks doctors are always right and don’t get it wrong. He doesn’t know the system like I do, our states current lack of programs, the snails pace in getting kids into appropriate doctors, with YEARS, not months waits in between. I’m not asking for judgement. I’m asking for compassion, understanding, and maybe some help. But if you can’t establish a relationship with your own relative and you chose to instead steal items from my child, yes that happened, please don’t come at me with your own misguided opinions of him.
Part of those accusations from my relative was actually due to my kid wanting to seek out euthanasia when he’s old enough to legally do so. Yes, my son has talked about this. Yes, his doctors ARE aware of this. And WHY has my son talked of this? Because he suffers in chronic pain. He suffers with his body not working correctly and dealing with horrible symptoms that LEAD to him being anxious and depressed and overwhelmed because of his PHYSICAL suffering with no answers or appropriate treatment. As I said earlier on, he has a physical health issue being undiagnosed which triggers mental health issues and frustration living a life hindered by these physical issues and being unable to do strenuous tasks which can put him bed for days after. That’s a heavy burden for a teen to deal with. He doesn’t want to end up like me and being disabled and only able to tolerate medical appointments (barely) and then back in bed day in and day out. What kind of life is that? He watches my progression and it kills him inside.
Should he be punished for voicing his thoughts? Are we now the thought police? What is wrong with a child being honest when trying to explain the depth of his suffering? This is the comment that led to the accusations from my family member. Then the recent case of an idiot parent who basically put a gun into her violent child’s hands that led to more accusations from a family member who stooped so low enough to assume I’d be that kind of parent. You can’t imagine the anger I felt from this. This wasn’t coming from a place of concern but from a place of control. I don’t play that. I will defend my child to the moon and back. My kids are my heart and soul, my life. If you think I don’t have their best interest in mind, then you know nothing about me. Nothing.
Our system is set up for failure. Too many fall through the cracks. It’s backwards and broken and does more harm than good in many cases. Lack of programs, lack of providers, specialists, and mental health programs. Gaslighting in the industry and blaming mental health for everything rather than digging dipper and or simply admitting it’s above your paygrade if you can’t figure it out causing harm to patients due to fragile doctor egos.
So much misunderstanding in mental health in general. Words spoken in panic or meltdown that don’t match a person’s behavior during normal times does not mean a child is dangerous or harmful. PDA Autism is completely misunderstood by those who do NOT have children’s with autism. Unless you have experience and knowledge then your opinions are unwarranted, unwanted, and ignorant. Words spoken in meltdown when a child is feeling out of control of his feelings are simply words spoken for shock factor to go to the extreme in their own way of getting others to see, they’ve hit their max, they’re overloaded and it’s time for a time out. This is actually a very COMMON issue with kids on the spectrum and only parents with autistic kiddos understand that struggle. They sure and hell aren’t going to tell you it’s simply a ‘discipline’ problem or their kids are just spoiled. Those are two very completely different things. The problem is those without kids and especially without kids with autism think they know better and feel it’s ok to tell you otherwise when they couldn’t be more wrong. Very wrong. It’s easy to judge. It’s not easy living in my shoes.