Early Onset Childhood Schizophrenia


#21

I’m not an angry person either. Life has been a torment for me most of my life and I’ve overcome a tremendous amount but seeing my child suffer feels like the world is being deliberately, horribly cruel. I want someone to blame! I want it to be someone’s fault, to point a finger and say, “You’re responsible”. On the opposite side, I want people to say it’s going to get better, that there’s a solution (even though I know there’s not). I want people to say I’m not crazy, to offer comfort. Most of all, I want everyone else’s world to stop spinning like mine has. I want to scream at the world, “Why don’t you see what we’re going through?”

I have found myself saying, “Haven’t I suffered enough, why does my child have to suffer too?” I don’t normally feel like an entitled person but in this area, I feel like the world owes me protection for my child because of what I went through. Unrealistic I know, it’s something I’m working on. Anger is part of it too - it feels so unfair.

Anger is a part of the grieving process - I’ve found accepting that I’m angry, accepting that it’s okay to be angry, helps. It sounds simplistic but giving yourself permission seems to make it less somehow. I try not to let myself get carried away or bitter though. I tell myself it’s okay to be angry but to stay focused on the goals. I find a couple of goals to work toward and that helps. I have literally given myself permission to cry every day (but draw the line at wallowing endlessly), and accept that phase will last as long as it lasts and may never go away. I may never fully stop being angry and sad and frustrated.

Today has been a good day so far. She’s smiling, happy, and present with us. Her eyes are clear and sparkling and she’s “shiny”. I treasure that - it lifts my spirits and my soul to see her that way, for however long it lasts (and yes, I have accepted that it won’t last forever).

Everything you’re going through is normal. Everything you’re going through now will help you to be stronger in the future. You just have to give yourself permission to feel it, even if it’s ugly or angry or sad. And accept that there’s no rulebook for any of this, no instructions, you’re just going to do the best you can every day. And some days you may fail, but tomorrow is one more opportunity to do better. I’ve started a blog that’s both a way to vent and a way to help others find some comfort. http://myparanoidschizophrenicchild.wordpress.com It might help you if you’re feeling alone because I think you and I are in similar places emotionally right now.

Thank you for sharing your post - believe it or not, talking with you about my experience is helping ME just as much!


#22

Ahhhhh…:disappointed_relieved:
I hear you.

I thought at times that it’s not fair, I grew up with a mother with scz unmedicated, and a brother, and an uncle. The things that happened!!! I thought it was over, that my life was finally my own and no longer affected by this insanity.

My home is so different…
why does this have to be the same?
Why does he have to suffer?

Hmmmm…it’s not the same. I don’t use corporal punishment, or verbal cruelty. I am present and available. I am gentle. It took a long time to become ME and not my mom.

Its okay to cry about this. Just a little…I like that.
And allowing myself to do so (after your wonderful post…I’m keeping it on my desktop!) has released tension and sadness I didn’t know I had bottled up so very much.

Thank you…even the morning coffee tastes better!!!
To a new year…for all of us.


#23

I have gotten better about writing down the sources, this time I didn’t get the source. Most likely it’s from E Fuller Torrey. My son’s doctor recently discussed purpose and routine in her evaluation, making it more likely to be Dr Torrey’s writing.


#24

Can you share more on this? The hospital is swamped right now in LA, so the dr (best we have ever had) is not able to facilitate the therapy he used to do.

On the same note: has anyone heard of “Coping Cat” strategies? I’m going to have to make a note to get the name of the book from this dr next time we are in. It helped!!!

Purpose and Routine.
The routine I know needs to improve and I can do this to a degree. Purpose?! Son said he needs to have some reason to live. If he can’t work or get married then why is he alive? All he does is make others have to take care of him. I tried to help him understand that just being in our family is important. I know that’s not the answer he seeks. He needs purpose.

Dad suggested he explore his artistic abilities more, and his gifts as to understanding gaming programs. (He rewrites all the games he plays.) It was brilliant in a way, once son understood. Now he thinks (after Dad helped, I have to give this quiet man credit!!!) that maybe, just maybe he can work online.

The flip? He doesn’t like to talk to anyone online.
He doesn’t like to talk to anyone really.

Purpose…perhaps a thread on this. I’m sure we’re not the only parents who have been asked by their child with scz as to what purpose is there in life?

Thnks!!


#25

I’m so very glad! It warms my heart to know it helped, that I helped in some way! I don’t know everything but always am willing to share. My brutal honesty sometimes gets me in trouble so I’m glad it helped this time! :slight_smile: I am sending you the biggest hugs and such love from one mother to another!

What a cutie! Here’s mine, from happier times about four years ago with our dog Nani (now deceased). It’s my Libby before this illness began to really change her and really shows the essence of her and her joy and love for life.


#26

I think a new thread is a good idea. If someone doesn’t get one started I will when I am back with my laptop later today.


#27

Love that grin!!!
Heart warming.


#28

That would be an excellent topic - I’m struggling with this as well. My husband helped me pretty quickly. I’m a professional writer so his automatic suggestion was to write about it. I have a hard time sometimes seeing value in it but it is helping me, even if no one ever reads it so I keep going. Finding a purpose for my daughter is another challenge in and of itself. She seems to love music and dance, and animals, and wants to help others. But she goes through phases where she doesn’t want anything to do with others - complete isolation. She’s probably too young to figure this out now but I think the basics of encouraging things they’re interested in and providing resources can help. We tried to give her a guitar but that was too much, so we’re just waiting and watching to see what can help. Having her symptoms more under control is where we’re having to start. And establishing a baseline for what optimal function is for her. She’s been so lost for the last three years, we really have no idea. This is the longest period of lucidity we’ve seen and no idea how long it will last.

I think as a society we put too much value on work. I’ve built my own life purpose around helping others. I can’t always fix things - I can’t always solve a problem. But no matter how small, every day, I make an effort to help someone. Some days it’s as simple as a kind word or conversation with someone who looks sad. Or buying a meal and giving it to a homeless person along with some conversation and companionship. Some days it’s lifting the spirits of a client who is struggling. And some days I’m so overwhelmed with all the need I see I don’t know how to start. Our world is hurting, everywhere people are hurting and suffering so I’ve had to dial back my desires there.

Maybe his purpose is to share his story and experiences to help others heal, have courage. Maybe his purpose is in entertainment - bringing joy to others through games and fun. Sometimes, it’s not always possible to understand our own purpose but to simply accept, without question, that there is one. We cannot know how we change the lives of others, even those closest to us. I learned that today while talking with an old friend in Indiana. I haven’t seen her in eight years but today she reached out to me. I had shared, finally, what we’re going through with Libby and she wanted me to know that she’s witnessed my struggles for the last eight years and how much my struggles had given her strength through her own. She’s seen first hand my complete love and devotion to my daughter over the years and that’s given her hope. I was astonished. MY hardships and witnessing me overcome them and fight through them had somehow helped her find strength?

I don’t know why or how it works that way, but many people have come to me recently letting me know that I have helped them to be more tolerant of others, more understanding, that they admire and respect me, and that I’ve been an inspiration in some way. I had no idea that was even out there in the world or that I was having that effect on people, some who are in other countries even. All because I’ve stood up and said, “We’re fighting against mental illness.” and shared some of that struggle. So for both you and him, just know there’s a purpose and it’s okay to not know exactly what it is. I’ve been writing for twenty years, sharing stories, trying to find wisdom, and I STILL don’t understand my purpose. I just keep doing what I feel I’m here to do, which is help others and share my voice. He will find his way in time if he just has faith in himself and doesn’t try to force it. Not knowing is hard but it’s okay.


#29

I’m a retired neuropsychologist–the sort of specialist you could take your son to. I advise an assessment.

You must talk to other families, perhaps at NAMI, and any trusted physicians, to find the best one. You need a pediatric neuropsychologist with ample experience working with kids who are psychotic. They must be willing to meet with you first so you can describe how your child will probably act during an assessment–they need to be prepared.

If a pre-testing meeting is impossible financially (e.g. not reimbursed by insurance), the neuropsychologist must be willing to at least talk to you on the phone and agree to read a few pages of description you could mail them. And you need to find out what methods they use and what practical benefits might occur depending on the results.

Ideally, the session–which ordinarily spans 4 or 5 hours–should be broken into shorter segments. (It’s possible that your child won’t cooperate now, very frustrating, but might cooperate in a year or two–don’t give up!)

We’ve had our younger daughter tested three times over the years (she’s now 38 years old). The results proved helpful in obtaining services and also in regards to to having something on paper to show teachers and relatives just what we’re dealing with… and how they can use her strengths to be more helpful.

A few weeks after the testing, you should have a feedback session in the clinician’s office, during which they answer your questions and put the results in terms you can understand. Most parents can’t make a lot of sense out of percentiles, standard scores, and z scores, let alone the clinical terms that are often used! These are needed to provide statistical proof of the conclusions reached by the neuropsychologist.

You should receive a copy of the report during this session. You will be able to copy it yourself and send it to various places over the next few years. You can also sign releases for the clinician to send/fax it to various places immediately.

Our daughter’s first report was very short, since no one yet knew what we were up against. It did point out some strengths and weaknesses in behavior and learning which were helpful to us at home, though the teachers mostly ignored them (she did not yet have special services, and we didn’t think to ask for them–we spent many hours helping her complete lessons she immediately forgot).

It also came in handy when an in-law sat me down and sweetly informed me that a “good mother” of her acquaintance had easily transformed her own child’s silly misbehavior almost overnight, by using techniques familiar to all good mothers, and obviously not to people like me… until this very moment. (Gee, thanks.)

The second evaluation gave more info and helped us get her SSI and Medicaid. It paved the way to a post-high school group home, and to us becoming her legal guardians–you MUST obtain guardianship just as your child reaches 18, or you’ll be locked out of every decision from then on. It takes months to achieve this, so you’ll need to start early researching the procedure and attorneys in your state.

The third neuropsych eval became necessary when our daughter had become well enough to do enough part-time work to accidentally disqualify herself from SSDI and the Medicare necessary for her services. The rule in our great country is that if you can earn a tiny pittance, maybe $10 per month over the maximum allowed, you are suddenly no longer disabled. no matter how many meds you take, how many hospitalizations, diagnoses, etc.

That third assessment was extensive and produced a wonderfully comprehensive description of strengths and weaknesses and list of diagnoses. After a 2-year fight we got her SSDI and Medicare back, thanks to that report. It also helped me remind my husband now and then what we’re dealing with, when he gets frustrated and annoyed about some behavior our daughter really can’t stop doing.

(In case you’re curious, during the second eval I was just starting classes on the way to earning my doctorate, and was not yet a neuropsychologist myself. Our daughter was eventually moved from the group home into a supported section 8 living arrangement which worked out well. Unfortunately, the current administration is busily slashing all assistance for suffering families, a quest they began back when they controlled only Congress, so I don’t know how to advise you on obtaining this help. I do know that she got into the group home easily because she’s never been violent, and it was to their advantage to start the paperwork to obtain the benefits, since that’s how they’d get paid.)

I hope this is helpful. <3


#30

That is SO Helpful! Thank you for sharing this guidance! I’ve been searching high and low for a path to follow for treatment rather than the back and forth with acute treatment and release. This is wonderful! <3 > <3 <3


#31

We needed this info…thank you so much!

He’s already scheduled for a Dr here locally. UCI Medical Center, LA Dr. Christy Hom
They want the testing to include extra test that the insurance may not pay for. Husband has just informed me this morning that he thinks we should pay the cost and go for it.

His last testing was through the school district two years ago. That followed the pattern you listed above. This testing will be through the hospital and with the child psychologist as you mentioned.

Now that I have an understanding, I was able to tell son what would be involved. Result? He’s willing to go.

Thank you again!!
:thinking:Especially the guardianship…whew, didn’t see that one coming!


#32

So glad to be helpful to you and your family. <3


#33

I discovered something yesterday with our situation. We are still kinda new to addressing the symptoms, having operated for 5 years like she was just a disobedient child. Yesterday, my husband helped me realize that the hospital has not coached or prepared her at all for understanding and coping with her symptoms. She was expecting the medication to take care of her hallucinations and delusions and she could be ‘normal’. Realizing that broke my heart and explained some of her depression and anxiety over the last few days as she was waiting for the symptoms to start again (as are we). So we tempered her expectations and let her know that the meds are to help control her symptoms and may not get rid of them entirely. We let her know it wasn’t her fault and that all we expect is for her to take her meds and follow the rules to the best of her ability, that there may be good days and bad days. She brightened right back up after our explanation and her stress level has been so much lower. I am so angry that no one thought to talk to her at the hospital but also angry with myself for assuming they did. She was there for 9 days, for crying out loud! Ugh. So a warning for all you parents of young children, you may have to fill in a lot of blanks for your child. My daughter has been curious about the meds and what that do. I have also been coaching her on some things she has to do because of the meds, like drink lots of water, eat healthy and get good sleep each night, keeping a routine. She is adapting to the changes really well overall and showing her to prioritize her health has given her confidence and control again. I would expect during lucid periods this approach may help adults too because who knows how much information they really receive.


#34

I never even thought about this. He came close to hospitalization, but hasn’t yet. It will be a challenge, most certainly for our entire family. I thought they would have prepared a child for release, at the very least due to ethical concerns. Thank you for sharing…and kudos to husband. Brilliant catch!

After reading your post, I asked son about if he thought the meds were going to “fix” things? He said he did at one time, and then thought he was “doing it wrong” as he wasn’t getting better. (There’s only one way to swallow a pill dude, can’t exactly get that “wrong”!) He told me he googled about it, read about schizophrenia, etc. I was surprised of course, especially as we try to monitor the internet. He summed it all up to “synapses”, listed a few brain terms, and said he doesn’t read anymore about it now, as it bothers him.

Again…I didn’t know.


#35

I swear, this whole thing is like trying to understand a jigsaw puzzle. Just when you think you understand where one piece fits, it’s time to look at another piece and figure it out. Right now it’s so rapid-fire I feel like I can’t keep up with the volumes of information coming my way. I’m overwhelmed in a way I’ve never experienced. All under the illusion that things are going along mostly okay because she’s not in an outright psychosis or distress.

I think the biggest thing is just asking questions, seeking out answers within our children. I have learned pretty quickly that Libby isn’t capable of volunteering information to me, nor does she know or understand the information that’s important. If I ask her the right question, the answers are helpful and she’s always happy to provide an answer, even if it makes her sad. Knowing the questions is ask is the hardest part. I’m learning things I would never have imagined and asking questions I never thought to ask. It’s not our fault we didn’t know - no one does. We are all just learning as we go.

I’m so glad it helped - as soon as we learned it my very next thought was to share it with everyone here! <3


#36

I’ve had doctors tell us that certain meds get more effective the longer you are on them.


#37

Didn’t know that…thanks!


#38

That was Abilfy he was referring to.


#39

This exactly what my son wants. Always says he is fine. He just wants to sit by himself in his room day after day either listening to music or watching movies or cartoons (anime). He is fine if i just let him do that, but it is very difficult for me to get anyone else to understand this, but since i am a single parent I need him to have some type of income. I am trying to get him on a disability pension right now, but that takes months or longer to get.

A little background: My son seemed somewhat odd growing up but not odd enough to think there was something mentally wrong. He did well in school, although he missed school quite abit. He has never been able to keep a job. He might make it to the interview, but then not show up to work after he had been hired or maybe show up one day and not the next, I could never figure out why. Then it all came to a head this past year when after living with his brother for some time he had to live on his own. He only lasted a week before the landlord called the police on him and he ran away. I had to put out a missing persons report on him and the police found him wandering the highway after more than a week, naked and suffering from the elements.

I am struggling to get and keep a two bedroom apartment for the both of us while trying to get him help for his condition. It has not been easy to say the least. Doctors have been trying to get him to take meds etc. but he doesnt want to and they dont want to push him, but try getting the government to understand this or help you help your son is another. They want him to work, which is completely impossible in the state he is in. Since he is an adult I cannot sign anything for him, I cannot make him take medication and i cannot make him do anything. If he would try the tests, the medications they might help, but he refuses.
Its hard to explain everything here , but i hope i have given you some kind of idea what i am going through


#40

Nice to “meet” you!

This site has helped me in so many ways…

I’m truly sorry for what you are going through…both of you.