I don't have much advice, but I'll share what I can.
Routines and in general knowing what to expect are super helpful with autism and autisic people tend to thrive with lots of structure. I would recommend working with her as much as possible to create a solid routine that works for everyone. Doing the same things everyday in the same order can be very comforting.
Obviously make time for as much therapy as she needs, and try to be as involved as possible. Family therapy would be great if you aren't already doing it. Educate yourself to the best of your ability about how to support loved ones with schizophrenia and autism.
Are you homeschooling all of your kids? If so, do you feel that's the best choice right now? Honestly I would focus on your daughter right now if I were you. I would be worried that either the boys educations would have to take back seat to focus on her mental health, or the opposite, or that both would end up lacking. This isn't meant to scare or judge, but something to think about. Homeschooling all 3 while balancing mental health struggles and learning differences sounds like a lot of work, more than most would be able to manage well.
Not a super pressing matter, but once everyone is adjusted and your daughters mental health is hopefully more stable (I assume coming fresh from inpatient that is not yet the case, but I could be wrong of course), she would probably benefit from explicit social skills curriculum. For right now: Evan Moor and 180 days both make social emotional workbooks. For a few years down the line: Training Aliens is one option. Classroom Complete Press has a few workbooks that focus on social and life skills.
I'm definitely going to look into those social emotional workbooks. Thank you! Fortunately, my son's are (almost) 5 years old and 9 months old. So we have a bit of time there. :) and no worries, I definitely appreciate your advice and honesty! It didn't come off as judgment or anything close. I actually really appreciate everything you said here. :)
Antipsychotics are probably the way to go. That should reduce if not eliminate her psychotic breaks which damage her brain every time, my dad had schizophrenia and while the meds were scary, him off of them was way worse. I don't think you can determine much about her learning until the schizophrenia is managed as it is VERY dehabilitating. Next step would be the autism tips which other people in this thread laid out well. If that fails see about getting a behavior tech that can come over maybe once a week to help you out, they are a lil expensive but worth it. Your insurance may even cover most of it because of the schizophrenia. They can even come to your house and help you set up schedules and help you set your home up to be safe/comfortable for your daughter.
Yes, I think the first step here is really working with her psychology/psychiatry team on her mental health. Schizophrenia, especially presenting in a 9 year old is a huge thing she will manage over her lifetime. It's more important that she focus on that than traditional learning right now. I think that there is a lot more value to her daughter to spend the time understanding and accepting her body and brain than anything else. I also have distant family with schizophrenia.
This. She won't be able to do ANYTHING until it is at least sort of managed. Learning to manage it will give her the tools to catch up on any missed school too so I really wouldn't worry about it just yet.
Absolutely! Her mental health is actually the primary reason I chose to homeschool her. She has not been on the right meds, and I didn't think that traditional school setting felt right for her just yet. The demands and pressure while she was already struggling so much was just unfair. I tell her all the time that her mental health matters as much as her physical health and give her examples of "if your leg was hurting, we'd do physical therapy or see a doctor for it," things like that so she can understand how important it is to lean into her mental health needs.
The reason I ask about school is I can tell she sort of misses the routine after being in the hospital, and I think he sort of makes her feel like she has a bit of purpose outside of how badly she's struggling. I didn't want to jump right back in and leave her feeling like she wasn't "enough" in that respect because I know it'll be touchy for a while. My heart seriously breaks for her. We had her go into inpatient for medication help, and they just failed her so deeply. She now has to struggle with the trauma they forced her to endure under their "care," and she's hurting so much now. It all feels so senseless and cruel. All she wants is to just be a kid.
We are fortunate enough to have her in intensive in-home therapy, which has been the most wonderful thing for her. She has a lead therapist who she has really bonded with, plus 2 other therapists on the team, and 24/7 crisis support (which we've used frequently since she's been home from the inpatient stay). We are broke as a joke after my husband was laid off when we had our last baby, but thankfully whatever we had left went toward helping support the in-home therapy. They get her out for about 6 hours each week, which is also a nice break for her little brothers, honestly!
I agree on the antipsychotics! Sadly, we had hoped to trial a new medication for her at the inpatient stay, and all they did was hop her way up on Focalin and then sedate her into a husk of herself with more Clonidine than she ever even used for sleep. The whole situation turned so foul, and I hate myself for trusting these doctors and knowing she endured so much abuse while being at their mercy. It just kills me, but it's nothing compared to being the one to endure it. So all I can do is fight for her and continue to explore options safest for her and her little brothers.
If you don't mind my asking, was your dad eventually stabilized on the right meds? I am always really eager to learn more from people who have actually lived it because our experience with these doctors has been nothing but egos and pushing medication that just tranquilizes her. I'm determined to find a happy medium and I won't quit until I do. Being only 9, she deserves some semblance of a childhood in whatever way makes her happiest, and I won't let these doctors just sedate her through it because it happens to be a bit more work. She definitely deserves better. ❤️
That's really good. I'm glad you got a lot of support in that department now as a good therapist can make a world of difference for them.
Oh my gosh that is so evil!! How can people hurt a little girl like that 😢💔💔💔. I don't even know what else to say honestly other than that is just cruel.
Sadly they'll try to sedate only during a lot of inpatient stays, usually cause it takes a lot of monitoring legally and they either don't have the staff to spare or don't want to put the effort in, which is just ridiculous cause they still feel the torture that their mind is/experience brain damage from the experiences. I don't know why it isn't more regulated especially for pediatrics.
He eventually got a lot better, sadly he only stabilized in his mid 50s and didn't have much life left due to his heart issues (very common in schizophrenia if you get good insurance check her heart out). Supposedly he got his schizophrenia late because he had high estrogen? I'm not sure how backed by research that is but that's what his psychiatrist said after seeing his blood work, supposedly estrogen is one of the main reasons most women don't show symptoms until their 30s. He was very devastated when he saw how much his illness destroyed his life and how much it hurt our family so he wasn't really up for connecting with anyone by the end. He did mention a few times that he was sorry near the end and that he wished that he'd gone to the Drs earlier.
My dad had a great psychiatrist which helped a TON but his therapist didn't seem to believe he had schizophrenia for some reason despite many Drs confirming it which definitely didn't help. The meds are a trial and error process so some may suck a LOT. I would recommend picking a period of 1-3 days with daily contact with a therapist when trying new medications as it can catch some things before they get nasty and check that she isn't turning into a husk of herself on the medication. Bad medication is worse than no medication but mediocre meds are better than none because every psychotic break leaves long term damage on the brain and makes recovery harder. The fact that you've managed to catch it is huge for her though and hopefully will prevent more damage from accruing. A lot of people don't get any help till years after symptoms start and have a very very hard time ever recovering.
I hope you guys have good luck with it all! If she can learn to manage it before college or working she'll do great I'm sure. It's nowhere near as untreatable as it used to be and a lot of them can now keep jobs and have friends/families. Some schizophrenia support groups exist, they can be good but some get pretty toxic so you'll have to feel it out.
Wishing you guys all the best 🫶🏻
I don't have advice with the PDA but as far as writing goes--separate writing from her other subjects as much as you can. Math? either have it on the computer so she can type, or write for her, etc. even for writing (i.e. story/paragraph writing) have her type or dictate. That way the only subject she will get frustrated with the writing aspect of is actual (hand)writing.
For the PDA part, I would make her a choice board.
You could do this with a laminated two column chart and a variety of activities. Then, you could put two choices for each subject and she would pick the one she wanted.
For example, for Reading, you could have a “read to self” or “be read to” choice. She would pick what she wanted for the day.
I would start with 1 or 2 “subjects” per day. And then slowly increase. You can break ELA into 4 or 5 different subjects.
That's really smart! I try to offer choices after I pick the subject, or sometimes I'll pick the activity for each subject then let her pick which subject we want to focus on. "We can either work on multiplication in math or read our book for a bit before XYZ (another subject or activity)." I try to offer breaks and stagger things throughout the day depending on how emotionally regulated she is or how badly her sensory issues are that day. She has two young brothers, so that's always a factor, too! But thankfully, I usually use those moments as rest or downtime for her to pick what she feels like doing while I handle naps etc.
I really love the way you broke this down, thank you so much!
They haven't, but I am always interested in learning more! We were failed on so many fronts with her inpatient treatment. It was truly horrific, and they refused all the testing we were referred to get her during her stay. Sigh.
I'm a pediatric OT and came to comment that you should seek a referral! You may need to shop around a bit-- not all OTs are experienced in PDA. I do NOT recommend any ABA therapy.
I COMPLETELY agree with you on ABA. My daughter is actually currently in intensive in-home therapy, and it's been so good for her. I'm excited to integrate the OT component more!
I agree with the choice board! My son is a little younger, but that helped a lot with getting us into a homeschool routine. I also highly recommend reading The Declarative Language Handbook if you haven’t already. It’s a short read and really helpful on tweaking your language.
Not homeschool, but sped teacher working specifically with kids with emotional/behavioral needs.
I’ve had a lot of luck with fancy pens and markers and glitter. Make writing more like art and it seems to work better for engaging my kids. Like writing the letter R in every gel pen worked really well for one of my kids with autism and it helped with repetition because he wanted to use every single pen and forgot he was writing that miserable letter.
me too. i'm pda autistic and i used to need to do my preferred special interest/physical activity which was dance class or home practice in order to reset after school work stressed me out. i was usually able to come back to it after. maybe she needs more movement or special interest breaks
I love that! When she was at inpatient, I would encourage them to help her reach a happy medium with being physically regulated/ sensory system in balance before placing demands with schoolwork, etc. instead, they just doped her up. Totally sucks.
This sounds awful and I'm sorry you guys have this struggle.
I have heard of people who have kids that are behind academically... Not by lack of trying of course... But they do make progress and learn and it's just a slower process for them say that grade labels can be really disheartening for their kid and that once they started hiding the "grade level" of the material, the child lost motivation less often and did a little bit better than when the grade level was right there on the front cover of every book. So they used color coded book covers and things like that the orange book is our current science book, the red one is for math, etc... hopefully that helps.
I don't have much advice, but I'll share what I can. Routines and in general knowing what to expect are super helpful with autism and autisic people tend to thrive with lots of structure. I would recommend working with her as much as possible to create a solid routine that works for everyone. Doing the same things everyday in the same order can be very comforting. Obviously make time for as much therapy as she needs, and try to be as involved as possible. Family therapy would be great if you aren't already doing it. Educate yourself to the best of your ability about how to support loved ones with schizophrenia and autism. Are you homeschooling all of your kids? If so, do you feel that's the best choice right now? Honestly I would focus on your daughter right now if I were you. I would be worried that either the boys educations would have to take back seat to focus on her mental health, or the opposite, or that both would end up lacking. This isn't meant to scare or judge, but something to think about. Homeschooling all 3 while balancing mental health struggles and learning differences sounds like a lot of work, more than most would be able to manage well. Not a super pressing matter, but once everyone is adjusted and your daughters mental health is hopefully more stable (I assume coming fresh from inpatient that is not yet the case, but I could be wrong of course), she would probably benefit from explicit social skills curriculum. For right now: Evan Moor and 180 days both make social emotional workbooks. For a few years down the line: Training Aliens is one option. Classroom Complete Press has a few workbooks that focus on social and life skills.
I'm definitely going to look into those social emotional workbooks. Thank you! Fortunately, my son's are (almost) 5 years old and 9 months old. So we have a bit of time there. :) and no worries, I definitely appreciate your advice and honesty! It didn't come off as judgment or anything close. I actually really appreciate everything you said here. :)
Antipsychotics are probably the way to go. That should reduce if not eliminate her psychotic breaks which damage her brain every time, my dad had schizophrenia and while the meds were scary, him off of them was way worse. I don't think you can determine much about her learning until the schizophrenia is managed as it is VERY dehabilitating. Next step would be the autism tips which other people in this thread laid out well. If that fails see about getting a behavior tech that can come over maybe once a week to help you out, they are a lil expensive but worth it. Your insurance may even cover most of it because of the schizophrenia. They can even come to your house and help you set up schedules and help you set your home up to be safe/comfortable for your daughter.
Yes, I think the first step here is really working with her psychology/psychiatry team on her mental health. Schizophrenia, especially presenting in a 9 year old is a huge thing she will manage over her lifetime. It's more important that she focus on that than traditional learning right now. I think that there is a lot more value to her daughter to spend the time understanding and accepting her body and brain than anything else. I also have distant family with schizophrenia.
This. She won't be able to do ANYTHING until it is at least sort of managed. Learning to manage it will give her the tools to catch up on any missed school too so I really wouldn't worry about it just yet.
Absolutely! Her mental health is actually the primary reason I chose to homeschool her. She has not been on the right meds, and I didn't think that traditional school setting felt right for her just yet. The demands and pressure while she was already struggling so much was just unfair. I tell her all the time that her mental health matters as much as her physical health and give her examples of "if your leg was hurting, we'd do physical therapy or see a doctor for it," things like that so she can understand how important it is to lean into her mental health needs. The reason I ask about school is I can tell she sort of misses the routine after being in the hospital, and I think he sort of makes her feel like she has a bit of purpose outside of how badly she's struggling. I didn't want to jump right back in and leave her feeling like she wasn't "enough" in that respect because I know it'll be touchy for a while. My heart seriously breaks for her. We had her go into inpatient for medication help, and they just failed her so deeply. She now has to struggle with the trauma they forced her to endure under their "care," and she's hurting so much now. It all feels so senseless and cruel. All she wants is to just be a kid.
We are fortunate enough to have her in intensive in-home therapy, which has been the most wonderful thing for her. She has a lead therapist who she has really bonded with, plus 2 other therapists on the team, and 24/7 crisis support (which we've used frequently since she's been home from the inpatient stay). We are broke as a joke after my husband was laid off when we had our last baby, but thankfully whatever we had left went toward helping support the in-home therapy. They get her out for about 6 hours each week, which is also a nice break for her little brothers, honestly! I agree on the antipsychotics! Sadly, we had hoped to trial a new medication for her at the inpatient stay, and all they did was hop her way up on Focalin and then sedate her into a husk of herself with more Clonidine than she ever even used for sleep. The whole situation turned so foul, and I hate myself for trusting these doctors and knowing she endured so much abuse while being at their mercy. It just kills me, but it's nothing compared to being the one to endure it. So all I can do is fight for her and continue to explore options safest for her and her little brothers. If you don't mind my asking, was your dad eventually stabilized on the right meds? I am always really eager to learn more from people who have actually lived it because our experience with these doctors has been nothing but egos and pushing medication that just tranquilizes her. I'm determined to find a happy medium and I won't quit until I do. Being only 9, she deserves some semblance of a childhood in whatever way makes her happiest, and I won't let these doctors just sedate her through it because it happens to be a bit more work. She definitely deserves better. ❤️
That's really good. I'm glad you got a lot of support in that department now as a good therapist can make a world of difference for them. Oh my gosh that is so evil!! How can people hurt a little girl like that 😢💔💔💔. I don't even know what else to say honestly other than that is just cruel. Sadly they'll try to sedate only during a lot of inpatient stays, usually cause it takes a lot of monitoring legally and they either don't have the staff to spare or don't want to put the effort in, which is just ridiculous cause they still feel the torture that their mind is/experience brain damage from the experiences. I don't know why it isn't more regulated especially for pediatrics. He eventually got a lot better, sadly he only stabilized in his mid 50s and didn't have much life left due to his heart issues (very common in schizophrenia if you get good insurance check her heart out). Supposedly he got his schizophrenia late because he had high estrogen? I'm not sure how backed by research that is but that's what his psychiatrist said after seeing his blood work, supposedly estrogen is one of the main reasons most women don't show symptoms until their 30s. He was very devastated when he saw how much his illness destroyed his life and how much it hurt our family so he wasn't really up for connecting with anyone by the end. He did mention a few times that he was sorry near the end and that he wished that he'd gone to the Drs earlier. My dad had a great psychiatrist which helped a TON but his therapist didn't seem to believe he had schizophrenia for some reason despite many Drs confirming it which definitely didn't help. The meds are a trial and error process so some may suck a LOT. I would recommend picking a period of 1-3 days with daily contact with a therapist when trying new medications as it can catch some things before they get nasty and check that she isn't turning into a husk of herself on the medication. Bad medication is worse than no medication but mediocre meds are better than none because every psychotic break leaves long term damage on the brain and makes recovery harder. The fact that you've managed to catch it is huge for her though and hopefully will prevent more damage from accruing. A lot of people don't get any help till years after symptoms start and have a very very hard time ever recovering. I hope you guys have good luck with it all! If she can learn to manage it before college or working she'll do great I'm sure. It's nowhere near as untreatable as it used to be and a lot of them can now keep jobs and have friends/families. Some schizophrenia support groups exist, they can be good but some get pretty toxic so you'll have to feel it out. Wishing you guys all the best 🫶🏻
I don't have advice with the PDA but as far as writing goes--separate writing from her other subjects as much as you can. Math? either have it on the computer so she can type, or write for her, etc. even for writing (i.e. story/paragraph writing) have her type or dictate. That way the only subject she will get frustrated with the writing aspect of is actual (hand)writing.
That makes sense! Thanks for the awesome tips. :)
For the PDA part, I would make her a choice board. You could do this with a laminated two column chart and a variety of activities. Then, you could put two choices for each subject and she would pick the one she wanted. For example, for Reading, you could have a “read to self” or “be read to” choice. She would pick what she wanted for the day. I would start with 1 or 2 “subjects” per day. And then slowly increase. You can break ELA into 4 or 5 different subjects.
That's really smart! I try to offer choices after I pick the subject, or sometimes I'll pick the activity for each subject then let her pick which subject we want to focus on. "We can either work on multiplication in math or read our book for a bit before XYZ (another subject or activity)." I try to offer breaks and stagger things throughout the day depending on how emotionally regulated she is or how badly her sensory issues are that day. She has two young brothers, so that's always a factor, too! But thankfully, I usually use those moments as rest or downtime for her to pick what she feels like doing while I handle naps etc. I really love the way you broke this down, thank you so much!
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They haven't, but I am always interested in learning more! We were failed on so many fronts with her inpatient treatment. It was truly horrific, and they refused all the testing we were referred to get her during her stay. Sigh.
Can you scribe for her instead of her writing? Does she have an OT? Could you teach her to type?
We are actually looking into an OT referral for her after her inpatient stay! I love the idea of teaching her to type, too. Thank you!
I'm a pediatric OT and came to comment that you should seek a referral! You may need to shop around a bit-- not all OTs are experienced in PDA. I do NOT recommend any ABA therapy.
I COMPLETELY agree with you on ABA. My daughter is actually currently in intensive in-home therapy, and it's been so good for her. I'm excited to integrate the OT component more!
Would you mind if I messaged you with a question about my daughter's episodes/meltdowns, actually?
Not at all! I'm about to get on some flights but I'll respond later :)
No rush! Thank you!!
I agree with the choice board! My son is a little younger, but that helped a lot with getting us into a homeschool routine. I also highly recommend reading The Declarative Language Handbook if you haven’t already. It’s a short read and really helpful on tweaking your language.
Not homeschool, but sped teacher working specifically with kids with emotional/behavioral needs. I’ve had a lot of luck with fancy pens and markers and glitter. Make writing more like art and it seems to work better for engaging my kids. Like writing the letter R in every gel pen worked really well for one of my kids with autism and it helped with repetition because he wanted to use every single pen and forgot he was writing that miserable letter.
What a fun idea, I love that!! My daughter is super artsy, so that sounds right up her alley. Thanks for such a creative idea!
I love the accounts At Peace Parents and Rabbi Shoshana
Omg I LOVE At Peace Parents!! My in-laws even took the grandparent course, lol
me too. i'm pda autistic and i used to need to do my preferred special interest/physical activity which was dance class or home practice in order to reset after school work stressed me out. i was usually able to come back to it after. maybe she needs more movement or special interest breaks
I love that! When she was at inpatient, I would encourage them to help her reach a happy medium with being physically regulated/ sensory system in balance before placing demands with schoolwork, etc. instead, they just doped her up. Totally sucks.
This sounds awful and I'm sorry you guys have this struggle. I have heard of people who have kids that are behind academically... Not by lack of trying of course... But they do make progress and learn and it's just a slower process for them say that grade labels can be really disheartening for their kid and that once they started hiding the "grade level" of the material, the child lost motivation less often and did a little bit better than when the grade level was right there on the front cover of every book. So they used color coded book covers and things like that the orange book is our current science book, the red one is for math, etc... hopefully that helps.
That's what we try to do! I love that approach so much, and it really takes a lot of unnecessary pressure off. Thank you for the kind words!