Family and Caregiver Schizophrenia Discussion Forum

Siblings....Early Onset Childhood Scz


#1

What information does anyone have as far as siblings are concerned?

Our son is almost 14yo, and dx Early Onset Childhood Scz.
His brother is exactly one year and one hour older.


#2

Squid -

What are asking exactly? Asking if one child has it, will the other? I have two sons, one is 20, the other 17. The 17 year old has it and it first showed up when he was about 7 1/2 but his p-doc didn’t want to put a formal label on it at that age, but he was hearing voices then. He was on anti-psychotics till about age 9, then he told me the voices had stopped. Found out about 2 years ago they hadn’t. He was smart enough to understand the mental health stigma. My older son has some depression, takes one med for it, but otherwise, he is fine. My husband is bipolar. Bipolar runs on both sides of our family and schziophrenia runs on my side of the family (grandmother’s brother and his daughters had it). My son’s diagnosis is actually schzioaffective w/ bipolar. He has the up and down of the moods and is more verbal and expressive than what I believe true schziophrenic people are. He does tend to be a loner and a homebody, but he can be very social with his small circle of friends. That sounds like an oxymoron what I just said, but he goes through cycles where he wants to be alone then he’ll have a period where he’ll hang w/ friends a lot.

Let me know if that isn’t what you were asking and I’ll answer. Glad to help in any way.


#3

Thank you…
Nooo…another question about siblings…but thank you for the clarification!

I was wondering how siblings feel growing up with a brother/sister whose life is now taking the scz route?

Do they feel like they are neglected? Forced to “grow up” too quickly?

Things like that.

As to the future with our older boy…we talk to him about the risk of scz. He was dx as suffering from anxiety for about 2 years…and took meds for it. The meds helped, but what really, REALLY helped that we decided he needed Dad more. (Dad had been home 6 non-consecutive days that year due to work!!) We left our home in NE and joined husband on “the road”. It meant moving frequently, but it kept us together. Once we did that, he improved greatly. Now, however, he is very particular about what medication he will take, and that he will NOT speak to a therapist. IF he ever develops scz, these areas could potentially a problem. Fortunately we are close (both of us with the older boy), so perhaps that will help (if it continues, he’s almost 15yo).

I was wondering about siblings.

A little background:
My brother was dx as scz, but was unmedicated because my mother was also dx and had her own beliefs as to what needed to be done. He’s in jail now for life, and I haven’t seen my mother in decades. My other brother became embroiled in drugs, and is now dead. I remember the situation really taking a toll on my younger, now passed brother. I was so busy paying bills, working, cleaning house and feeding everyone that I actually had the opportunity to be out from the house situation more often. I had far more support than either boy ever received. Of course, I really, really didn’t want anyone to “know” what was happening at home. My adult life is much different.

I want to keep it that way for our older boy.

How?

Thank you!


#4

Squid -

Wow!!! And I thought my childhood was a horror story. I have honestly never met anyone whose story even came close. Yours just blew me away. So sorry.

My older son was used to his little brother getting more attention since he was diagnosed so young (first severe ADHD at 6, then the voices about 7 1/2). So my older son was used to M getting a pass here and there. When his condition worsened about 2 years, D was in denial, said it was a bunch of BS, him just trying to get out of going to school. Fall 2016, M choked D, sheriff came, M arrested. D kept saying we needed to do something about him, but I tried to explain that it isn’t that easy. Especially in our state (Oklahoma), mental health funding is very low. We don’t have long-term places for juveniles, even violent ones. So we an incident prior to him attacking us in July where he started a fist fight with two of D’s friends, they somewhat wrecked the house and D moved out that night. M destroyed a lot of property that night (punched out a car window, caved in the roof of my car crawling on top of it when I was trying to leave).

His behavior has torn our family apart, but fortunately, we have seen improvement.

Older son now seems to accept his brother’s illness but doesn’t like to discuss it very much.

They have since mended their relationship and things are closer to being back to our normal.


#5

Thank you for sharing.

It’s a tough subject, and we all know it’s tough as it is.

I walk with our older boy to his High School each morning. It’s 3 miles, and we walk through a significantly sized area where many homeless live. It’s apparent, clearly, that there are mental health issues involved.

In some strange way, this brings us closer. He told me this morning that there’s nothing like this time, when he has my undivided attention. We all need that.

But…to see so many homeless with MI… somehow has made the situation with his brother a little more worrisome for our oldest boy.

I found it odd, I thought this morning as I walked back…that these people are sleeping here (one in a foul smelling RV, another on the lawn…so many in the nooks and crannies of apartment building hedges) and they have family that are worried about them.

And yet…their presence has helped our oldest boy understand what his brother is facing. They have helped him/us, at least to recognize first hand the realities.

I wish to thank you…
I was able to share your account with him, and ask him how he felt? What were his concerns? And, he ended up telling me… there were many…

Without going into personal dialog, please just know that your share helped our oldest boy and I discuss a subject that is more than a little challenging.

On the flip side…I found this picture yesterday. I was shopping, and turned around to see why our youngest was having problems. It was a year ago, and on this day, at this moment I took the picture because I realized something…namely, that:

Not everything is related to schizophrenia. Sometimes, your older brother is simply a jerk.


#6

I can’t speak to the siblings much but I can say that any family relationship will have struggles with SCZ. My stepson has a lot of trouble understanding that my daughter’s behavior is due to illness, especially when they have, what I call, little spats. It’s hard for either of them to understand what’s little day to day drama and what’s something more serious. And to be quite honest, even I struggle to tell the difference.

Because of her inability to distinguish reality from her hallucinations and delusions and paranoia that he’s out to get her, it’s hard to explain to her that no, her brother isn’t being a jerk, it’s all in your head. When she hears him yell at her but he’s in the next room playing on his computer, how do you handle that? My son now looks to me (when I’m around) and I shake my head which tells him not to respond, that it’s an episode. We only recently started this but it helps him to not blow up at her and make the situation worse. I have counseled him one of one for this to just take a deep breath and let me handle it. Then I can work to get her under control because it’s not his job to manage her, it’s mine.

We had a lot of years where there were explosions between the two of them that ended up with both screaming and then in tears. It also doesn’t help that she’s injured him (minorly) in the past with both a pencil and a book. So he has a certain amount of fear of her too. And heaven only knows what happens when I’m not home. We have a home video system that records 24/7 but I’m quite literally afraid of what I’ll see. It’s more there in case there’s a really bad issue and we need video rather than a first-person account. I hope I never have to use it for that.

At the end of the day, I do a lot of mediating between them to keep things civil. And every time there’s a judgment call as to whether this is typical family tension or her illness causing a problem. It has had the unfortunate side effect of depression and isolation for him to cope, which isn’t really great but we haven’t figured out a way to help him yet.

My suggestions:

  1. You can’t keep him in the dark. Just be honest with him and help him understand. Kids understand way more than we give them credit for (my daughter knew she was “different” than other kids without anyone telling her - because she sees things and hears things no one else does.)
  2. Let him come talk to you whenever he feels the need. Let him know he can talk to you, ask questions, etc and he won’t get in trouble (sometimes that fear is unverbalized and requires a lot of reminding)

#7

Yeah…I’ve heard of things that have happened when we stepped away. They usually will have a “look”, especially younger son. He (the one who is dx) will sometimes slip me a note that will tell me what happened. Other times we have to get older boy aside and he may tell us. Together, we can then get them to say.

Bottom line? We seldom leave them together. Even with my presence, if it’s the wrong time, things can happen. The one who is dx has become violent many times with the older boy. This is a scary reality we face. He’s big boy, and if the stress builds along with anger, he won’t hesitate long (if at all).

The remorse is there. But still…geesh, I’ve been awakened in the middle of the night to screams as the younger one is attacking the older. Bloody noses bleed a lot, and finding two bloody boys in the middle of the night…!!! The room was still dark! Younger boy was only 4, and having a psych break. Later he wanted to know who made brother bleed? Both were wailing and screaming.

That was the beginning. With our son, he goes from uber mellow, medicated…to suicidal FAST. For a long time, we were told to not talk in his presence about, or even use the word “suicide”. His leaning towards it increased, and in no time the Drs changed and said no, now we had to talk about it. The Drs still ask him at most visits if he’s feeling anything related to suicide. (You know…they ask a variety of questions.) When he’s in that mind frame, he does not want to live. At all. Period.

He cries a lot too. Not bratty crying, we all know what that looks like. This is deep, and hits everyone hard. “Inconsolable” comes to mind…except he can eventually be calmed. An increase in meds, sleep and isolation, home, and he slowly comes back around. It will take months. I have finally gotten used to the time involved once this starts. It’s starts fast, ends slowly.

Older boy won’t sleep in the same room with him now. He says he keeps having nightmares of his brother standing over him while he sleeps. It has happened. He says he would rather sleep on the couch, closer to us. He was embarrassed to admit that it was his younger brother’s odd behaviors at night that disturb his sleep. He thought it meant that he was judging his brother.

It’s okay…I get it. I’ve been awakened many times by the schizophrenia. It’s really like that for me. I see a boy in the active throes of schizophrenia standing over me in the dark. He is not my son at that moment. He may be screaming, he may be mumbling “momma” over and over…he may then run smack into the bedroom wall when the light gets turned on…

but for a moment…it’s a stranger who is not acting normal in any way.

In the dark, standing over me…whispering to voices that I can’t hear.

I get it.
Sometimes.

His last teacher asked me if I was frightened of him?
She told me she was. She liked him, he’s sweet, and they got along. She said it was the way he could change, and just what she saw worried her.

She is also the most experienced teacher the school district had with schizophrenia. He wasn’t her only student who was dx, he was the youngest. Another High school student who was dx she had at the time had fallen into the dark arts. Another was just back from the hospital. She had been around the block already, and saw areas of worry.

We had to hide the knives for a long time, and still monitor. He impales fruit, cheese, especially large melons. He doesn’t remember, and will ask who did it? He finds it frightening too.

I don’t like waking up to a large knife sticking out of a watermelon that has been sliced up…while we slept
(Not sliced up for serving…cuts across the skin only which means he stood there for a while before plunging the knife in, sometimes more than once.) These things increase when he’s in formal schooling. He doesn’t see a connection, but the Drs do. Teachers do. Why one teacher asked for him to be transferred. He doesn’t remember too, which is really difficult to put a behavior plan on. If it never happened, or someone else did it, then why are we telling him to stop? He finds this very confusing…and then the shame…then the dark thoughts…it changes fast.

And yet…everyone used to comment on how sweet he is. Just don’t push things with him. (Childcare, teachers, staff, neighbors, church members…etc.) As he aging now, and growing so much bigger, the word “sweet” isn’t used as much. Now, they say “he’s odd”.

What sort of future will this present?
I don’t have a clue.
I cannot imagine how he would do in public school. He would be in 9th, and yet cannot even walk near a busy street due to the sounds. He says he can’t concentrate in class with all the talking, but thinks the talking is outside from legitimate students. Increase of meds, the students are now “obeying and being quiet”, but he’s also asleep which means again: no concentration.

He has destroyed so many homework assignments. Right now, he’s working on subtraction with borrowing. He doesn’t get it. We can gain the skill, but if it isn’t revisited again and again with regularity, the skill is lost. This is across the board. Revisit increases his stress, as he “learned this already”.

Shooooot, we’ve had him lose it over dinner at the Olive Garden. (It smelled “off”, led to over an hour of misery. We stood our ground, he did as well. He finally worked through it, but it was a long hour in the quietest corner of the restuarant.) Last night the scones tasted “moldy”. They were fresh baked. This is an early warning that he may be entering another period of hallucinations.

He also woke up early. Could be good, could be bad. For now…I’ll just enjoy his smile and momentary bursts of clarity.

Thanks for your feedback. I’m closely following this thread. Siblings…how can we care for them too?
Sorry for the rambling…
these are things I’m not used to talking about.


#8

My son is the one with Schizophrenia. He had issues through childhood. My daughter is 6 years older. I always tried to make sure and spend time with just her. She has anxiety. I am really proud to say that she has developed the most beautiful empathy for those living with a mental illness and that now she works at a State Mental Hosp. She does worry about herself developing Schizophrenia and is not sure she wants to have children out of concern about that.

It sounds like you are already doing a fabulous job for your older boy, staying in tune to what he needs.


#9

Thanks…

they sound alike. The anxiety, and the empathy.

I had to laugh a little yesterday.
Our older boy will text me from High School during the day. (Okay…an almost 15 yo texts his mom during the day…I think it’s odd but I’m not going to discourage it!! He has noticed the girls…I hear all about it every day when he gets home. I anticipate at some point he will stop…and I’ll miss his notes!!)

So, I get a text asking about how his brother is doing (homeschooled, dx)? AND…to make sure to give him the assignments in such a way that he’s motivated. If any student is bored, they won’t want to do the work.

What? Thanks son…didn’t think of that.
Then I realized…dang, he’s thinking about his brother while he’s supposed to be listening.

Well…the care is great. His concern for us both is really awesome.

I’m glad he talks about girls, and the different conversations that take place during his school day. That he has been pushed (by a teacher he admires) to join a club. That he likes going to school, and seeks out teachers, librarians, students, etc to interact with.

He texts home to ask how I am? How his brother is?
And…he’ll send some random funny about his day.

I hope this is a good thing for him. That his future will be impacted, has been, I’m certain. But, perhaps in a good way?

He’s concerned about both issues. She works at a hospital!!! Kudos…huge kudos. I’ll pass this along to older son.

Thanks for sharing and listening!!
Peaceful day to you and yours…


#10

There’s no doubt, our life experiences shape our perspectives on life. It sounds like your son is being shaped to be a more caring understanding kind-hearted person. We need a lot more like him in the world. Remember, fire is what makes the forged sword strong enough not to break when struck. This will bring about strength in him later, even if it hurts now.

<3 Charity