I have been searching for advice and support, but I am discovering that having a child with schizophrenia is quite unusual!
My wonderful, kind and sweet boy is 16 years old, he’s the oldest of my 3 lads, who I am raising alone after fleeing domestic violence last year. All 3 boys are on the autistic spectrum, but my oldest “L”, has a rare chromosome disorder affecting his brain development, growth, learning, digestion, coordination, the list goes on. Until recently, I was told that anything not explained by autism, would likely be the chromosome disorder.
He has always suffered with severe anxiety, was self harming (to the extent that he could), harmful stimming, from 3 years old. He would have paranoid episodes, insisting that the teachers at school were coordinating to have him taken away from me and given to a foster family. He has abnormal attachments to toys, talking to them, listening to them, he carries a bag of action men everywhere he goes. He has never brought me a letter home from school, as he says they are telling tales and lies about him, even though he knows what’s in the letter, he thinks school has a secret code they use with me to communicate secretly. If he gets upset with me, he accuses me of phoning the bullies from school and giving the reasons to pick on him.
He has had voices and hallucinations for approx 2 years, they tell him to harm himself, and he has started obeying them. He has taken disposable razors apart and cut himself, gone for knives in the kitchen and tried to cut his arms (I’ve managed to take them away in time) and has talked about taking all his meds at once. His learning difficulties make it slightly easier to predict what’s happening, so I have fitted locks on interior doors, keep the sharps in a padlocked box, lock the meds away, etc.
Child mental health services have always insisted that he is experiencing pseudo hallucinations due to stress and autism. But in the last week, he has seen a psychiatrist who has diagnosed child schizophrenia.
He is being medicated for schizophrenia now, which is helping. He is psychosis free for his 5th day, but I’ve noticed he is displaying what I think is mania now.
He has been like this before, when he was much younger, so it wasn’t so bad. But he is a young man now, taller than me, and much, much stronger! He has hurt all of us by squeezing (he says cuddling) us, keeps picking the cats up and squeezing them (they are hiding out in my room most of the time now poor things), he headbutted his youngest bro the other day, because he loves him SO much. He spends most of the day running around screaming and singing because he says he is SO happy, but insists he is in control of his emotions, which he clearly is not.
The home treatment team is visiting today, so I will raise my concerns with them, but I’m very aware that when he is this high, there’s only one way he can go - down.
Any suggestions how to help him though the mania safely, and how I can help him with his condition would be appreciated!
Thanks in advance.
Hey, I’m sorry you’re going through that, must be very difficult, and congratulations on being such a caring person.
If the meds he’s taking are causing mania, his psychiatrist should know about it, the doctor will probably have to change meds.
Thank you so much for replying. I must admit, through other conversations elsewhere, it has been suggested that the meds may be doing this. I will definitely take it up with the psychiatrist.
I work with many children on the spectrum and there is truly a fair amount of overlap with other neurodevelopmental conditions like schizophrenia. His case sounds complex though. It sounds as if you have home based services already which is awesome. Would it be possible for the psychiatrist to admit him to a hospital in order to safely monitor medication while they are trying different strengths, etc? Many of my students with autism take antipsychotics, especially Risperdal. My own son with psychosis is taking it as well. I see a positive difference in him. I hope they find the right fit for your son soon.
I’ve had schizophrenia since I was a child. I had to learn to cope on my own because everyone I knew at the time is still very ignorant about mental illness.
You’re a wonderful person. My mom dealt with a lot too not quite as much as you but my father is schizoaffective not diagnosed until his late forties. My brother is bipolar with psychotic features, has adhd and autism. I admire anyone who takes on so much.
Thank you all for your replies. Home treatment somehow forgot him yesterday, but they have been today.
The advice given is to give him procyclidine when his is manic, and it will be reviewed by the psychiatrist when he sees her Tuesday.
@TAG I’m not sure if you are UK based or elsewhere. We have a system that operates here (uk Midlands) where rather than admitting him to hospital, he has a team of OT’s, nurses, psychologists and psychiatrists that see him at home. It’s easier for him to be in his home environment and easier on the family. If he’s struggling at a time the home treatment team cannot come out, the crisis team take over and come out instead.
@schizofriendia I’m sorry to hear that you didn’t have the support you needed. I can’t imagine how hard it would be for my boy if he didn’t have any help. It hasn’t been great at times, but he’s always had a degree of support. I hope you have some help now.
@cbbrown thank you, he really is a lovely boy. There does seem to be a link between PDD’s and schizophrenia. Like they don’t have enough to deal with already.
I do now. I dunno, I figure if I was able to survive that, I can probably handle anything now.
Wow…home treatment sounds like a brilliant program. That truly allows caregivers to be team members in their loved one’s treatment. I hope it will be helpful for your son.
**You are a strong woman!
I have a sister that helps in classes for Autism and other behaviour disorders.
When trying to figure out how to deal with my son`s aggressiveness,she said do NOT accept it.
I may be over the line here—maybe your son is already in classes for this?
@bridgecomet I’ve not heard of classes like that here. He used to be very violent, but with the autism outreach team I made social stories, learned distraction techniques and made the whole house autism friendly. He’s not being aggressive as in angry, it’s more like being unable to contain the happiness, like he’s drunk on euphoria.
He only really gets angry aggressive now when he thinks we are part of his psychosis.
The mania makes him impulsive and when he’s trying to love us he is too rough as he is just so “high” that he can’t see that he’s hurting. I use the distraction methods I’ve been taught, but he has hurt himself from jumping around, causing tendon damage in his feet and bumping into things. It’s so hard, he’s the size of a grown man, but with the emotional age of a 6 year old.
He’s calmer today, having giggling fits because doctor who was in his dream last night, that’s tickled him. I’m hoping I won’t need to use the procyclidine, but it’s reassuring to know it’s there is I need it.
He’s having a good day so far today.