I wanted to add that for us, we didn’t realize something was wrong until my daughter was 7 and came to me saying, “Mommy, I want to die. I want to kill myself.” She says a girl at school told her it would be better if she killed herself. Now 3 years later I have to wonder if that little girl was a human or a hallucination. She wouldn’t know the difference. Ultimately it doesn’t matter - my daughter has wanted to die for the last three years. Knowing she’s suffering every day is probably the worst part. I struggle sometimes with a desire to kill myself when life gets really hard but have built internal coping skills to help me disregard those urges. She’s 10 and the impulse is so much stronger in her than I have ever seen in someone so young. My biggest fear is one day she will act and I will be too late. I live with that everyday and have been unable to find a coping mechanism for it yet.
Unfortunately just about everyone here has probably heard similar comments and innuendos. It doesn’t matter where it comes from, it hurts to the core. They simply do not understand.
The real key is believing in yourself and your daughter enough to let the bs roll off. That means taking care of yourself and learning all you can which is what you are doing. Sometimes I’m good at it and sometimes not so much.
I am no longer ashamed and am more direct with my son’s therapist and doctors. Some professionals appreciate that and some don’t. I have a good friend who occasionally implies that my son is getting drugs somewhere and she has a really annoying habit of repeating this even though I know she is wrong. The last time she presented it again, I told her I appreciated her concern but in this case she was wrong. She doesn’t believe in the psychiatric system and I have to weigh everything she says through that lens. Big hugs to you and your children and everyone on here.
My son is an adult, but at one point was dropped from the county mental health services program because they said he was too high functioning. They had only seen him between psychotic episodes and he seemed “normal.” He continued to see a psychiatrist through private health insurance. Well, after an episode where he had to be taken to the ER and then was placed on involuntary hold at a psych hospital (his first time on a hold), I contacted the county with the documentation and insisted that he was not “normal” and really needed their help. They agreed.
I was surprised and concerned that the county mental health services staff could not initially understand that my son, with diagnosed sza at the time, had episodic psychosis and that during the residual, in between times, could present as functional but still have sza.
It did take several years for my son to be diagnosed sz.
Our son was 3 when they first noticed. We have family members on both sides with scz. The drs gave us advice, and waited. By 7/8 they diagnosed him as Early Onset Childhood Scz. They added anxiety and depression to that dx as the years went by.
The first few years with meds were difficult. (Now he is on Seroquel, Clonidine, Sertraline and Hydroxizine.) School has been difficult. As a family, we’re okay. His older brother sometimes has trouble understanding (or rather: accommodating).
He’ll be 14 at the end of January. Sweet, quiet…don’t stress him though. He was this way as an infant. Different…just could not take stress. My career was with autism, and sadly, I knew this was not autism.
My late brother was dx, as is my mother and uncle. My husband has a late aunt who was also dx. Each with scz.
And yeah…we feel a lot of guilt as the genetic component became clear to us. Too young? You bet…as he has aged he is able to tell me more of what was happening “back then”.
One eye opener? When he was screaming for “Momma!!” and running into the walls, he couldn’t see anything but “white paper crinkled up”. Sooo, he couldn’t see the wall or anything else for that matter. He told me years later that when I would offer him a drink he couldn’t hear me for all the screaming that the voices were doing. He only knew that he saw white crinkled paper, was terrified by the messages of death and mayhem, and then water pouring down his throat. He thought they were trying to drown him, and as it was actually WATER, it must all be “real”.
I didn’t know. I only knew his lips were dry and cracked and he was sweating profusely. This was 2nd grade.
First grade…he thanked me for washing my note off the bathroom wall. “What note?”
“The one in blood that told me to kill brother. The blood kept running down the wall. I’m glad it’s gone.”
I don’t know how they do it. I really don’t. How does he trust me in spite of all this?
@Author_Charity_Marie and everyone els. Sorry I have been absent for awhile. I had to escape for a little while to catch a breath from it all and dealing with the holidays. If an outsider where to look at my son or even someone we know they would think he is an average kid that may be at times a little sensitive in certain situations, if they even were to think that. Only a very select few people outside of what have to know about him know anything that we are going through. Now that I know it’s hard to not see what he is going through and I catch myself acting to the situation differently than what I would have before. I am scared that I may do or say something to make things worse. As a mother I worry about my children constantly anyways but now I worry even more for even more reasons. I am just trying to take it a moment at a time right now.
It it not really a rumor, more like a practice for all the reasons you listed. My son always had an axix 1 and 2 diagnosis, but it was ADHD and ODD. With the disfunction in our family and long divorce when he was 12 followed by parental alienation etc. etc, things were changing all the time. Then came Major depressive disorder after he had a bad sexual encounter to which he responded like he had been raped, then the “delusions/hallucinations” began after he was given spice and another street drug.
I strongly urge you to keep a journal- more like a 3 ring binder and document EVERYTHING.A daily log of behavior, school reports, doctor visits, medications etc., make a tab for each thing. You are her only advocate, so being prepared for anything and everything is a key part to being able to get help when you need it. Don’t second guess yourself or let the negative stuff in. I was in denial for a long time. I go to local NAMI support and education meetings, to help me cope with this “new normal”. Your daughter is a unique and gifted girl and so lucky to have you as her mom. (O, and yes - take care of yourself - do something that is good for you everyday, walking, meditation, green smoothie, prayer, what ever works for you!)
Blessings to you both and to all
I have often wondered the same thing. But we do have to be careful because one day they cannot see us as their parents. We have to learn their sideway glances and clues of leaving the room when we come in as relapse or needing time alone.
We make the best decisions based on our instincts with our children. Hang in there.
That’s so helpful to have that confirmed because it helps us to know what we’re up against and how to proceed. I have a binder and I’ve been keeping a log of everything. Part of it was to help me to understand what she’s going through, recognize stressors, and be able to respond appropriately at home. But at the same time, we feel woefully ill-prepared and lost with managing it all. She’s already devolving and has had two hallucinations today which have made her very sad and afraid. I’ve comforted her as best as I can but I’m not sure what I should do. I’ve emailed the psychiatrist’s office, she’s not in a panic or in danger so I don’t feel the need to take her to the ER or the hospital, but in the same token, she’s not exactly doing very well. She’s not in crisis, but she’s not in a good place. So what do you do with that?
I don’t want to hijack OP’s thread so if I need to post somewhere else as a new topic, please let me know @Alycat. I’m posting it here because our situations seem similar and you might either have experience or have that question too.
@Author_Charity_Marie You can post here as much as you like. We have both said how much we have in common in this situation so just maybe others will find this page that have the same in common with us and we all can better educate from it maybe.
I’ve recently had a situation this week that’s happened twice where Libby has been invited for a sleepover by two different girls. That’s not happened in the last four years so it’s a sign she’s doing better socially but it presents a huge issue. How can I let her do that? What if she’s triggered? Do I tell the parents so they’re informed? How much do I disclose? What about her medication in the morning and at night? What about safety? What if she wakes up in an unfamiliar environment and freaks out? And how will I possibly be able to sleep? She’s stayed over at other people’s houses before but we didn’t understand her symptoms or that her behavior could be dangerous. And the meds weren’t as big of a factor prior.
So far I’ve politely declined but I hate to because I feel like Libby is missing out as a result. She wants so much to be a normal child and like everyone else and I feel like saying no is telling her she’s not. Any ideas?
Is it an option to invite her friend for a sleepover at your house instead?
Logistically, it hasn’t been (not enough beds) but we might be able to accommodate that with a little time and spending some money. We could possibly purchase an air mattress for that purpose. Great suggestion @amysfo!
A long time ago in a galaxy far, far away…we loved to just have sleeping bags on the floor!
Have a safe and happy New Year, Author.
Lol you barbarian you! Our floors are tile so no padding. If carpet I would have considered it.
You too!
My son was talking, or rather listening to a woman who was in an obvious manic state at our local swimming pool. He has/had a flat affect and was just…listening. She was talking about meds (same ones he is taking) and how to live life.
Then, I saw the eyes start to blink slowly. THAT’s the sign.
I waited, as I realized that I’m not always going to be there, at these moments, to tell him what to do. Just a second longer…give him a moment.
He looked at her, and said: “I have a problem. I am done talking now, but I don’t know what to say to end this conversation.”
LOL…without being mean or nasty (as he didn’t feel this, he felt uncomfortable) he handled the situation.
She was delighted to have the opportunity to tell him how to end a conversation (it was important to her to be seen as knowledgeable by everyone at the pool), and yet she had to end the conversation.
He told me later (and he doesn’t volunteer much) that he wants to socialize but doesn’t know what to do when he’s done. He recognizes that he’s “done” before others are at times. We realized that he needed to learn how to “opt out”.
No sleep overs for him, too much and nighttime is the worst.
As to speaking of the dx with other families? I do…I DO!
It’s better than having someone not understand why my son believes something has happened but it really hasn’t. I’ve had times where the other mother began to immediately defend her child and attack mine. Not good, we all know that. (I’m thinking specifically of an Easter Egg Hunt where he accused the other boy of attacking him. It didn’t happen. We were all there, but strangers to one another.)
Grocery stores are the best in this regard. I let the local store know of us by quietly speaking to the manager with my son present to the side. They provide a place for him to sit quietly and staff will keep an eye if I need help. I have had them help him and I back to the car during those unusual situations that can’t be predicted but occur. Once they know who we are, it’s not typically discussed again.
The interesting thing? By speaking of the dx, we both have met many people who have immediate family members with scz. They “get it”.
As to the sleepover…it’s awesome she is making friends! What came to mind was this: does she know how to reach out to you, or the adult if she reaches her limit? Can she learn with this opportunity?
Just a thought.
Wishing you the best…
I agree with this - for Libby nighttime is the worst. Oddly enough, what helps and gives her comfort right now is not being alone. She’s scared of the things she sees and needs the comfort of someone she can physically touch (she hasn’t quite learned that she has tactile hallucinations yet). She has learned that asking for help does just that - it helps and brings comfort - so she’s fighting back against the isolation symptoms and the depression. The medication is helping give her that much at least. For now, she knows how to reach out to us - she calls, texts, or if need be, she comes home. She knows she doesn’t need to feel ashamed or guilty about doing so - we’ve coached her on that - and that it’s okay if other people don’t understand it. We’ve empowered her to do what she feels necessary within reason and she’s been doing a great job with it so far. Without the meds, I’m not sure we’d be so successful. Our acceptance of her symptoms has led to HER acceptance of them, and so she’s been doing much better. At school will be a different matter.
I guess for me, I’ve already had my fair share of prejudices, ignorance, and disrespect. My own sister stopped talking to me three years ago. A prior school called CPS twice because they were sure I was abusing her even though there were no physical indications. And if I’m really honest, part of me still hopes I’m wrong. I want to be wrong so much, although my gut is certain. She fits 100% of the symptoms and has for many years but I can’t seem to stop hoping against it, especially since she seems to be outside of an episode currently. My brain tells me one thing, and my heart refuses to accept. I don’t know how to get the two in alignment. Some days are better than others. My husband says one day the acceptance will fully be there.
Well said!!!
Very well said!!!
Thnks