Son isolates and sleeps most of the day. Help!

I’m not sure what else to do. My son sleeps most of the day. He isolates himself in his room and only comes down to eat or take a shower. He is non compliant with meds. Last night (New Years Eve) I guess his symptoms were so bad he called out to me to get him his meds. It’s has been a roller coaster ride with him being non compliant and his symptoms getting worse.
I must say it was a silver lining that he requested his meds, but I’m so afraid of him going off of it again once he starts to feel well.

Today(New Years Day) he actually had a conversation with me stating that he tired and feels tired and all he wants to do is sleep. Says he’s afraid that he won’t last long and that he may die. That scared me and brought me to tears. Does anyone else have similar experience to share? What should I do?

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Yes, most of us have had similar experiences. I tend to look for the good.

  1. He requested medication and presumably took it.

  2. He opened up to you, which means he trusts you right now.

  3. You know where he is.

  4. He takes showers. He eats food.

Keep close, but do not crowd him or overwhelm (mistakes I have made). It sounds like you are there for him and being as supportive as possible. I guess you probably know how to recognize a crisis and seek help during one.

If it’s not overwhelming to him, just let him know how much you love him in a simple way. Ask him if there is any food he wants that isn’t in the house so you can buy it for him. Ask him if there is anything he needs that you can provide.

These types of situations are heart breaking.

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My son does this. (14yo, on Seroquel 300mg/Clonidine.1mg/Sertraline 100mg/Hydroxizine 25mg) has periods like this. Some more intense than others…

I try to remember that for him, he’s also growing. His joints ache from the medication. Sometimes he lays there for a few hours wishing for sleep but it doesn’t come. The next day he’s dragging even more. He hates it, and says he understands why so many people with scz stop taking their meds. His one hope is that “they will find the right med”…one that doesn’t make you tired or achy.

It’s interesting to hear from him. He doesn’t talk much, but he’s a big thinker. As he can only really remember a terrifying life prior to meds, then periods of time which were similar as his meds had been reduced. He is generally in agreement with taking the meds. He has met many people who have told him too their family member “went off” meds, with disastrous results.

However, he has also told his Drs that he is going off his meds, doesn’t need them, etc. Some Drs tiptoe around the subject, others told him straight up that this was not a good idea, and don’t even consider it. I don’t know which is better, as he is still so young.

We just increased his Hydroxinzine to twice a day, as his hands are shaking so bad and he’s beginning to have more frequent (albeit brief) bouts of mania. At first he expressed that he was too tired and drained to even move, and this was more frustrating than the agitation. Went back to previous dose, and mania kicked in again. Now he’s back to the previous increase and is in agreement.

I noticed that if I write down how he’s feeling with the med changes, **or if I can, get him to write it dow**n…then he’s more cooperative and trusting of what he’s taking. I also have documentation to show him that HE SAID this or that about the meds. A big challenge for us is that it appears I remember things one way, he remembers them another. Some times its easy to sort out, others are frustrating.

My son did this too…it’s scary, but not as much as the first few times. Tell the Dr as ours referred to this as depression and shifted that component of the medications. It helped. On one hand it is a depressing subject, on another there is support via medication. Talk therapy helped him a lot during that time, along with more time to rest and keeping stress down. Sugar binges lead to this sometimes, and happens FAST.

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Thank you so much for your insight and input. The advice is greatly appreciated.
Happy New Year!

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If he is willing, being close to you might be additional comfort. My ten year old seems to yo-yo from wanting to be close to needing distraction to needing time alone. I try to trust within reason when she identifies a need. I ask if she wants me near or wants to be alone, if there’s anything that might help. We brainstorm through her coping mechanisms because sometimes she is too overwhelmed to do it herself.

Oftentimes I think she shares because she wants to feel better but doesn’t know how. I try to avoid telling her what to do but instead ask if such and such might help with what she is feeling. She is thankfully in a non-violent, non-abusive phase currently so that seems to be working. Seeing them despair is hard. Remember all of this is cyclical and the symptoms will ebb and flow in waves.

For my daughter I give a lot of hugs, cuddles, and backrubs as I would if she were sick with a cold or fever. Sometimes this works, sometimes not. Sometimes they just want/need Mom and that special feeling only mom brings from having been there all the other times before of pain and discomfort. Sometimes they just need validation they aren’t alone and someone cares. But ultimately it’s about opening yourself up to them and to their pain, letting them know it’s okay to share with you and that you love them and want to help. Even though it just you too.

We are still in the early stages currently so these things may not work as they progress or during severe symptoms.

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Hereandhere, that is absolutely the best advice. Thank you.

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This is a very good point (along with many excellent points!)
It seems that if I remember to show him what tools are available. The unseen things.
For instance, he often says he doesn’t want to do ------, because either Dad or I will think he’s a burden, a moocher, all sorts of derogatory names. I have a discreet note written to myself to remind me that:

He does not ask for hugs, but needs them. I have offered, and frequently have discovered that I am holding a crying child who was very upset. He didn’t look like it, and for some reason, didn’t ask for help.(I don’t get it, as there have been plenty of times where he has started screaming for Momma. BUT, hugs? We’re a huggy family, he didn’t respond much to hugs when he was younger, now?) It’s something he wants but does not ask for. Hence, a very tiny note on my “To Do” list each day. Ask him if he wants a hug…that’s all. If he glares and says “No”, well, I can’t take it personally. Too many times though he has said “yes” and started sobbing.

He doesn’t know what “normal” is. He really just wants to know. I was afraid to say “normal” or not, as that seemed to emphasize he is different from “us” (kinda like we’re chosen, special, perfect, implying he is not), Turns out that he already thought this, and simply wanted to be taught what “normal” people do.

Hmmmm…okay buddy. Here’s a few things we discovered, and the way he smiles with each realization is heartwarming.

To discover that “normal” has many different interpretations. Also helps with his personal delusional belief challenge: that of being a burden on us. He is NOT, but this triggery thought leads to self harm and suicidal ideations. For years, when he saw the price of his medications at the pharmacy, episodes would blossom within the hour. He’s quiet, I didn’t know the price of the prescriptions was the cause. One thought, led to another, and I have a son who is walking into oncoming traffic. It does NOT occur to him to tell me “Why”.

Hence, for us, a few statements to define our “normal”:

“Normal” people also grow weary of visitors. That’s why we have lots of ways to politely end visits.
“Normal” people take medication. They also track their medication, order refills and pay the price asked.
“Normal” people worry that they are being watched through their phones.
“Normal” people worry about the end of the world.
“Normal” people wonder what they are going to do with their life.
“Normal” people don’t know if college is in their future.
“Normal” people go to the psych hospital. Yes, they do.
“Normal” people are hurt and offended by internet trolls.

There is plenty of stuff relegated to the land of schizophrenia. We know this…
for him, sometimes just hearing that “normal” people feel the same seems to make a big difference in his reactions.

“Normal” people are embarrassed by pimples.
“Normal” people wonder if the girl likes them.
“Normal” people think what they drew/wrote/or thought was wrong.

Then, at other times, there is nothing I can say or do but hold him.

He had a rare moment of disclosure yesterday. He told me that my checking on him in the morning (husband recommended giving him the early dose of meds VERY early, around 5am, in order for him to have some portion of the day left to function in) really helps. I didn’t know that it mattered. He said it’s nice because he is reminded that we want him around. When I stroke his cheek and cover him with more blankets. When I told him that IF he killed himself, I would lose half my mind and all of my heart, he’s that special to us. He (he’s a very young almost 14yo) who doesn’t talk much. I didn’t know that the morning routine was so significant.

That sounds sad, but for him, the suicidal thoughts are the most challenging. Suicide makes sense to him. Waking to dark thoughts, the same ones he fell asleep to is rough. I didn’t know he actually heard and remembered what I told him in the early morning hours. He says that it helps.

Uggh. I didn’t know.

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I have also had to address this very adult topic with my 10-year-old. There’s no instructional manual for how to talk about being suicidal with your child and I really wish there were. And maybe it’s because we believe only adults should feel this way and that idea needs to change. Our children are dealing with a lot of adult issues, and when I was a child I dealt with some really big issues too. My husband tells me that children, after a certain age, as very capable of understanding more than we give them credit for and helping them understand these bigger issues prepares them for success as adults. (My hubby is a bit of a genius if you ask me).

I feel so much like we’re in uncharted territory every day. My husband has said that honesty is always best - that the not knowing is what gets you and your child into troubled waters and in every case that’s been true.

So I told my daughter about when I was a little girl and wanted to kill myself (modified of course - this is the fuller version). I was 14 and had been raped by an 18-year-old boy that I thought liked me. So I ran away from home, found an abandoned house and hid there for the next four days. One of my friends from school at the time had her brother bring me food and water from their house. At one point I found an old razor blade in the bathroom and began playing with it for the next few days. I used it to cut off all my long hair. I just butchered it.

I finally reached the point after several days where I decided I would kill myself. I was getting ready to make the first cut when a window in the room opened. I quickly hid in the closet as a man crawled in the window. He found me pretty quickly and I was stunned to find out he was a police officer. A neighbor had reported a couple kids going in and out of an abandoned house nearby and the cop came to investigate. He was able to get me out of the closet, sat me on the floor and just talked to me. His name was Officer Spalding (like the tennis ball) and he made me promise him that I would never take my own life and that from that point forward, if I ever felt like I wanted to, that I would remember him and our promise.

I’m now 38 years old and there have been many times over the last 24 years that I have wanted to hurt myself. But every single time, I hear his voice and my promise to him, and the feeling fades. Because on that day he told me I was special, that I mattered, and that while I didn’t know now, one day I would be in the right place to help someone else. And that we’re all here for a reason, even if we don’t understand what it is. And he was right.

So my daughter and I made a similar promise - that if she felt that way again, no matter how often, that she could always come tell me and I would help her. And I made her promise me she would not hurt herself, and how much she meant to me. She did recently come to me and tell me she wanted to die but she now understands it’s a feeling that she doesn’t have to act on, that it’s a feeling that is okay to have and just means something is wrong and to ask for help. I’ve let her know that sometimes when life is really overwhelming and hard, we want to give up but if we just hang in there long enough, things will usually change and get better.

Condensing almost two decades worth of coping skills into sound bites she could understand was hard but I just let my love for her guide me and somehow give me the words to say to help her. If love can be a shield of protection, I hope it surrounds her every day. At least, that’s what I’m trying to do - just surround her with my love inside and out every day so much that she carries it with her everywhere she goes. Because the world is cruel. But love is kind and can hopefully overcome and heal the cruelty of others. So keep doing what you’re doing @Squid and even if he doesn’t say it, know that even the smallest gesture of love can be the thing that makes the difference now or later. And that all those small gestures, in the end, add up to something huge, something they can cling to each day.

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Beautiful!!!
So well written…this should be published!!

Thank you…your words are exquisite.
I can’t even describe how deeply this touches me.

S.

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Before my son was hospitalized, we got a message from an old family fried who called us out of the blue and left a message. My son was up before us and sitting at the kitchen table. I recognized that serious look and said. Will, how would you like to hear from an old friend? He looked up and said “Oh yes, mom thank you”. It makes me cry now. When we called the young man back we for his voice machine but I hope he calls again. At least I can remind him of that from time to time.

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He has to take his meds everyday in order for them to work. They have shots he can take twice a month instead, but he has to agree to it. My so did the same things for years, until he got on the right meds and accepts that he needs them to stay stable. Good luck.

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My adopted son, age 20, has just now learned that if he wants to feel good he has to take his meds. He comes to me w/ all these plans for continued education, job search etc…and yesterday he ask,“mom, are u proud of me?” I told him I am proud of you each and ever day of his life… He ask me why I was proud of him? I said I am proud that he gets out of bed each day w/ a smile on his face to challenge the new day… He seemed satisfied…
There are many good days and if i knew all I know now I would still adopt him… He is a blessing to me.

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HereandHere-

I deeply appreciate your advise in above reply.

It’s very difficult to cope with our distress over not doing enough

for our family members who struggle with any of the forms of brain disorders.

Your words bring great comfort.

My son also likes to be left alone and rests a lot.

He is in a group home here in Vermont.

Don’t want to review the history,

but he’s had a very difficult life.

Maple Woman

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Get him off those meds and get him on Clozapine. We left our psychiatrist of 5 years and use an expert on the medication. Referred from a friend. He is in the Bronx. Every medication will make you sleep however this internal medicine doc will help him and he will be on the correct med

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