Great advice. Also, another parent once suggested a university hospital that does research might be especially helpful. The one thing I’m finding with state hospitals is they are there mostly to stabilize and move them out.
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Your idea to go the residential route is a good one. With 3 acute admissions in 6 months and continuing psychosis and suicidal ideation, you may have a good shot at getting it approved. I have seen many kids with a variety of mental health conditions improve significantly with a residential program, especially those that are longer term (1 year). If she doesn’t stabilize within a few months after this admission, I would start the process with your insurance or through your community mental health organization. Best wishes!
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Oh, you didn’t. Part of this is me trying to work through it all to figure out what to do next. And your post did help with that. It helped me realize where my line is. I have been too soft with these people and as her advocate, I need to stand strong and not budge. I need to demand things for her care, in as nice a way as possible. I need to be the rock that doesn’t budge. I’ve been so uncertain and I’ve let that sway me into doing what they suggest, which has been to send her home. Part of that is selfish because I want her home, with me, even though I know that’s not the best thing for her.
So far I’ve left a second message for her therapist requesting to discuss a residential program for her. Maybe if I insist on that we can get closer. The acute program is not going to work for getting her diagnosed. I want her admitted to somewhere in Austin that specializes in this and might be more apt to diagnose her. It may mean that I refuse to let them send her home in order to get her admitted. I hate to do that but I feel like I’m running out of options at this point to get her properly treated and diagnosed.
So thank you. And if I came off as negative, that wasn’t my intention. Ther’s so much to process and I find myself being overly blunt sometimes. The filters don’t work as they should sometimes 
And I just have run out of what little patience I may have had.
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I thought it was just us. I guess, I assumed it was because the school would hear, or know that we move a lot, and just didn’t want to deal with our situation. KY was willing to, and then overwhelmed.
How on earth did you get the school to waive homework? That was our breaking point: homework. The anger and stress!
When our boy was in Middle School (a new school/state too)…we found that if I emailed his school counselor every morning with a note as to current status, it helped. Almost immediately, the teachers involved asked to be included on this email list.
Then I was asked to include notes regarding any assignment/homework issues. I would post those at the end, send…and would then receive thank you notes from most of the teachers within minutes of the school day starting.
The end of the day, the teachers would do the same. Emails back from them, especially if a situation occurred at school. I liked that…I always had a paper trail of communication.
It helped. The daily emails. eventually, as the situation deteriorated (sadly, for us) Social Workers also asked to be included in the email chain. This prevented truancy issues, and allowed staff to volunteer for various potential situations.
For instance: suicide prevention week…was also a week in which he was actively hallucinating. Social Worker caught this, sent email back recommending he be pulled from the assembly for this subject. This happened frequently…a teacher, or staff member would see a potential problem and would offer a solution before hand. It did help, and as husband was included in the email chain, it kept him “in the loop”.
Oh! They let him text me from school. The phone was an issue, he wanted it, I didn’t want it at school, the teachers did, so…we worked it out during the IEP discussions. It was their idea that it remain as part of his school day. As it turned out they were correct. There were times ( a field trip for instance), where he didn’t know what to do, texted me, then took the phone to the teacher. This took over an hour, but prevented him from listening to the commands while in a public place he was not familiar with. Other times he had left school and was hiding in the bushes to isolate. They couldn’t find him, but he texted home. It worked, and prevented us from losing our cool with him or each other.
I like emails because it gives each person the opportunity to think before they speak. The little niceties in written speech helps a great deal. We still have a good relationship with that school.
Just passing a long a few little things that made Middle School life a bit easier for me.
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HUGE extra point:
The paper trail of communication.
I forgot…
the year grew serious. Because I had ROI’s between agencies, the paper trail communication could be shared.
Which meant, I could show the daily emails to his Dr’s and therapist. They could read from each staff member involved in incidents, as they happened. Clear communication about our sons condition, as it was presenting itself in the public school.
It took pressure off of me to provide evidence for a diagnosis. He started the school year with some question as to if this was the correct dx…by the end, they had enough information to be convinced.
It wasn’t hostile either…they loved the emails. Yes, I noticed that the language became more specific once multi agencies were involved in reading, and confidentiality disclosures were sometimes asked for again. Still, no one had to wait for information. All I did was carry the information around to his various appointments. With the ROI’s and the paper trail, they were able to work together far more quickly.
Med changes were communicated instantly, to everyone. Dr’s appointments were made, and communicated to everyone. It made life easier, and kept everyone literally up to the minute.
(Sorry this is so long.)
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That was wonderful the way that IEP was orchestrated. You should probably work for the department of education or better yet head that agency. Great job!
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It was two-fold. First, due to dyslexia and then second I refused to torment her with it anymore. So in her IEP plan I told them no more. I explained my stance and reasoning and the school made an accommodation. They did the same thing for my autistic son. Whether that will work in middle school I don’t know. They also go to an early morning one on one session for study help.
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Today Libby said the nurse said she is not mentally ill, she just has an active imagination. Lord help me! I may go off on someone if that’s been said to my child. Trying to breathe! I hope she is wrong.
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The nurse actually presented you as a dishonest person to your daughter.
She undermined any trust that has been established, particularly in regards to medical concerns.
Presented in this light, it’s terrible.
I so very much hope that the nurse did not realize what she did.
That, perhaps she is a young, young person who hasn’t yet matured in this field?
OR she’s in the wrong field?
Geesh…
This is serious.
Personally, I doubt Libby would have made this up or “imagined” it. How very confusing now this must be to her! If any condition requires solid reassurance as to the need for true mental health care, this is it.
(I live in Southern California. I see what “active imaginations” can lead to. It was 80* yesterday, the homeless population has increased even more in our neighborhood. Food is a real issue. Water especially.)
Sometimes, I’ve noticed, staff seem to forget to think ahead. That there is a future that must be thought of. The patient does go home, and the family continues on. How they (staff) interact with the patients carries on to the home front.
I worked with parents and clients…and I’ve been called on the carpet a few times for saying something that I should not have. There were a few times I was completely unaware until it was explained to me. Wow…the shock and embarrassment, the shame…for really upsetting the parents, or client… (one time it was a fellow agency). I was far too young…skilled, but young. And needed most of all: to think BEFORE I spoke!
Wow…never did what the nurse did though.
But, I could have.
Who knows how tired she was? Still, I’d take the time to let her know. This is serious.
Just my two cents.
I did “think” first before writing this too! :confounded
Proof that people can learn.
I’m sorry this happened to you, especially right now.
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@Author_Charity_Marie I am so sorry this happened. People who see a tiny slice of our family members’ lives make instant judgements. They undermine our work and confuse our family members.
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We have a school nurse like that— she keeps comparing my son to her son in college with ADHD. After a while I started just nodding and smiling because it was making me so annoyed.
I actually changed his medication schedule so he wouldn’t have to interact with her.
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I am beyond furious. And shocked. I have been trying to get ahold of her, she comes in at 10. She better have a damn good explanation or she and her supervisor are getting a piece of my mind today! Libby now believes she doesn’t need meds and can be ‘cured’! This just set us back two years. And I have no idea what to do.
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I have to write things down.
I write what I’m thinking.
I go through and reread it as if I’m the person I’m upset with. (For instance: I think of myself as the nurse, or her supervisor).
I then cross off anything that I’ve written which is beyond the point, or refers to my emotions and not the facts.
I reread…as the nurse or supervisor.
If I’m motivated by what I’ve written… then I talk to them about the facts I’ve already outlined.
My emotions are going to come through no matter what. The fact that I’m calling them into a meeting communicates a great deal.
But writing it out before hand gives me a chance to say exactly what I want to say.
I’ve taken my pre-writings and made a bullet list of points. Sometimes I take the points down on a 3x5 and refer to it prior to the meeting.
I’ve found that sometimes the bullet list gets put into a file and is referred to by the other party. (They’ve been used by agencies as an expectation list for future interactions.)
This helps me…that’s all.
Thinking of you…
may you find a quiet moment of peace today.
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Squid’s suggestion reminds me - my husband always pushes me to write it all out - just write it all- with all my emotions and anger flowing everything I want to say. I will start really hitting the keys hard on the keyboard once I get going. Then I read it and try to find out what was the most important thing i need to accomplish in the conversation.
I always want medical people to give my children their best effort and care. Can be really tricky.
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I forgot that they included the emails in the IEP. That was cool.
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Ugh, her therapist confirmed what the nurse said, that they were seeing behavior where she was using the “mental illness” to justify her actions or something of that nature. It was very vague. Considering Libby is super compliant and "has no issues"anytime I call, I don’t know what that’s about. She’s being discharged Wednesday and they’re going to send her documentation to two residential treatment programs.
I have no words for any of this. They have set her up to fail again. The minute the hallucinations and delusions come back, she’ll crumble all over again. My only choice now is a residential program that can treat her properly and hopefully diagnose her. But in the meantime, we’re at ground zero all over again. sigh
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So very frustrating. Everyone has to be consistent - especially when dealing with any child. How can you put a team together when you different parties contradicting each other? Parents must be seen as legitimate care providers. We must be included in the discussions and the treatment plans. You are the one that has to be able to monitor all of them and expect them to follow agreed methods.
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Charity, I’ve been there too! One doctor once told me the same thing about three years ago. “He was just different, and said he’s probably always been different, hasn’t he?”
This was after he was diagnosed by several other doctors and after I filed for his SSI. I do remember sort of panicking but it didn’t work negatively against my son. This is serious.
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This reminded me of a period of time…over a year ago, but still a rough patch. (This is long…just sharing in the event that someone else has had the question raised: is this schitzophrenia or a behavioral problem?)
Our son started saying every once in a while, (he’s a quiet guy naturally, and then further quiet due to his way of living with scz) that he “can’t help it, it’s the schizophrenia”.
What? I got it, or at least I thought I did. He was (in my mind) trying to ACCEPT that he had this diagnosis and what it meant in conjunction with day to day living. This is what he was talking about in his CBT, and was a main subject with his med Drs and teachers.
What I didn’t realize was so very significant at the time, (but do now of course!), is this: his Dr’s had REDUCED his meds, all the way down as low as they could go, in order to redetermine his dx. He is young, and there were concerns as to IF it was the correct dx, and IF he needed “all these meds”? Husband expressed that he felt we had “lobotimized” our son through medication.
All the symptoms returned and were ugly. Now we had an older boy who could articulate, to a degree, as to what was happening. He seemed so clear when he spoke. “It’s the scz”…
I think husband was still coming to terms with the dx too. All I know is, that this one evening, son was having problems (homework, it appeared to be purely behavioral). Husband is quiet, and I usually handle the kid stuff. This night, something pushed husband. He told son: “It’s not schitzophrenia, you’re being lazy and giving your mom a hard time. Stop being a jerk, and get back to work.” (Or something very close to this. No cussing, nothing really disparaging, just parenting as he would do if our older boy was giving me trouble.)
Sparing the extensive details…within minutes our son entered a psych break. He was already close, we just didn’t recognize it. Husband said later, in the moment he said what he did, he SAW.
He saw that there is something else there distorting how our son hears things.
Our son became suicidal that fast…this night he locked himself in the bathroom and stood under screaming hot water. He “deserved it” he said. (We don’t use corporal punishment, and have a “kind hands” philosophy in the house.) Where did he get the idea of hot water? I don’t know anymore…I only knew that I had to get the bathroom open.
Husband was destroyed, and I was more than a little overwhelmed. It seemed like I had to keep my mind and self under control at all times, and always on alert. Son has a way (I don’t know if others do…) of not feeling physical things if he’s in a certain place. He cannot tolerate strangers, but pain? He won’t go for a walk, as it “hurts”…but stood under the scalding hot water? IT was a mess.
Of course, husband blamed himself.
Son blamed himself.
Older boy hid.
I cleaned the bathroom while younger son sobbed in his bed.
The situation grew worse, until meds were increased BACK to the “original” point. Increased again a year later.
My point in this memory?
Husband didn’t “do” anything wrong. He stood up for his wife, their mother, as any father would during after dinner homework challenges. Son…well, he was tapering off high dosages of meds, which we discovered he needed.
Looking back, husband and I have talked about this event on occasion. We both agreed that he needs medication. We did not have this confidence before, after all, we questioned why our son was so heavily dosed!? In hindsight, we feel tremendous guilt for putting son through this…but we also KNOW now what happens when he doesn’t have medication. Even son remembers this aspect.
Husband has said, and has stuck to this…that he will NOT discipline or instruct our boy.
Not after what happened.
I can tell son: “This is the schizophrenia…so, let’s think of what tools to use right now. You do have them, which one will work right now?”
I can also tell son: “This is NOT schizophrenia. This is…”
I don’t know…
I have experienced this question being raised.
I asked the school for advice? After a great deal of resource gathering, they came back with: “We don’t know how to separate the two…this is not strictly a behavioral problem.”
I don’t know if sharing what happened to us matters to anyone or not. I just thought to myself as I read your post(s)…I wished I wasn’t alone when I heard this subject brought up in our house. I didn’t have anyone who could relate. I do know that our life changed drastically that night.
We had a few more (very rare) situations where husband tried to parent our younger son. He’s a great guy…but the rapid change our son presents again and again has caused husband to stop trying altogether. He’s there, he cares, but will not discipline the younger one. He walks out of the room and sends me in.
If we analyzed this strictly from a behavioral point of reference: our son manages to get the parent he prefers to work with. Husband gets the “son” he prefers to interact with.
For us, even the Drs are hesitant to place any criticism or pressure on our son.
I don’t know.
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And they are all different and are different themselves at different times.
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