u/themissesmayhem

My daughter was discharged last Monday from inpatient. She was in IOP at our local facility when admitted to the other facility because our local place had no beds. They referred her to their PHP upon discharge. We declined that facility because we were under the impression that she would go back to the local facilities program and be bumped back up to their PHP or be restarted in the IOP. We have had 2 different meetings now with the local facilities outpatient team. They said the other day that we should look for individual therapy, but that if we had trouble finding it to come back. We went back today, and they said that they wouldn't take her for either PHP and/or IOP. When I asked why they said...Dr. soandso (head doctor at hospital) said that we've done everything we can for her. Then, they proceeded to give us a handwritten list of other hospitals he would recommend. These other facilities are over an hour away. I've called a bunch of individual therapist but keep getting met with the "not a good fit" for their practice responses. My daughters normal mental health provider can't see her until the 20th, and we will be without her new secondary antipsychotic in a few days. She will be able to get her injection of invega before then, but that seems to start wearing off about 6-7 days before it's time to get it again. We currently believe we are seeing breakthrough symptoms. Our regular doctor won't up the injection or authorize a refill on a script she didn't write until we see her in person. I'm going to call the outpatient place we were originally referred to tomorrow and see if we can still get in there for the medication management if nothing else. What do I do if I can't get her in there before medication runs out? Emergency Room?

She is 25 with ASD and Schizoaffective Disorder depressive type.

Facility started daughter on a second antipsychotic while inpatient this past week. This was a new facility because our local place didn't have any beds. Their communication was terrible. Completely automated system with only voicemails and no one to ever return calls. She is on 156 MG of invega sustenna, and they added 15 MG of abilify. Is this common with schizoaffective disorder? Our mental health doctor did not seem to like this. The paperwork they gave me at discharge said they did this because she had several failed monotherapy trials. Two of the drugs they had listed that had failed, she's never even been on. She is 25 with ASD and Schizoaffective Disorder. She is developmentally delayed, and I handle all her appointments and medication management, etc and she's never been prescribed these two drugs. They weren't administered at the other hospital either...I double checked with them today. This facility started her on the second antipsychotic as soon as she arrived, so i don't believe they tried them either. I'm just curious if it's common to have to be on 2 antipsychotics and if that's a long-term practice or temporary. Will be asking at our next appointment, but I was just wondering if ya'll have experience with this.

My daughter is 25. Diagnosed with ASD and Schizoaffective Disorder depressive type. What is with the different stories with different people? The inpatient therapist called today, and we compared notes, and it's like we are talking about two different people. We both were like, I'm so confused. She will call me crying and saying he said xyz and that's she upset about it and then go to group and say stuff that I supposedly said. She was like this at the last facility, too. She's been like this in therapy so much so that the therapist will not see her unless I sit in on the sessions with her. She will sometimes flip flop on stories inbthe same conversation with me. Is it a symptom of the schizoaffective disorder? Is it intentional dishonesty? How do you handle...ignore or tell them you know different?

My daughter is 25. She has ASD and Schizoaffective Disorder. She is currently on her 3rd inpatient stay in 3 months. She is chronologically 25 but developmentally a young teenager. She asks to go in for assessments and is kept and then calls repeatedly upset that she is there. She was taken to a facility on Sunday morning around 5 a.m. She called once the transport got her there and sounded ok on the voice-mail she left. I missed the call due to being asleep. She didn't call back til this morning. Likely because they sedated her, which they've had to do the other times she's been admitted due to being so anxious being there. Today, though...8 calls since 10 a.m....all crying and carrying on and saying some odd things (could be real things that were said but sounded unlikely) and just generally in a state of panic. I dread answering the phone sometimes. Do you ever just not answer the phone? I feel awful for feeling that way, but it stresses me out. I am here trying to care for her 18 year old disabled brother and her 3 1/2 month old daughter, and it's stressing me out. I love her tremendously and miss her but these calls are just too much sometimes. So...how do you handle communication during inpatient stays? Do you limit the amount of calls or visits?

Hello. Primary caregiver for almost 13 week old granddaughter. I'm wondering if I should be concerned about her not eating more. She is on Elecare formula and famotidine. I have tried increasing her feeds several times over the past few weeks, but she consistently only takes 3 oz per feed. She's got plenty of wet and dirty diapers and seems content. Everything I'm reading says she should be eating more...like 28-32 a day. She stays at 24 oz or under. She weighs 13 lbs last time I weighed her.

This is a sensitive matter so please be kind.

I hope this is okay to share. I know my daughter can't be the only one dealing with PPD, PPA, PPP.. My 25 year old daughter has ASD and Schizoaffective Disorder. Her pregnancy was a surprise at 36 weeks due to her not remembering ever having had a sexual encounter. We do not know if my granddaughter was conceived during a psychotic episode or an assault. We have spoken with all types of law enforcement and medical teams and have been told that with no memory of anything, there is no crime to report. Having to go off her psychiatric medication during the pregnancy triggered a psychotic break. She has spent the last 3 months in and out of the hospital and intensive therapy programs. She has a therapist, psychiatric doctor, and whole outpatient therapy team and MHMR teams that we are working with on her healing journey. As you can imagine, bonding with the baby and learning to care for her has been very difficult but something she very much wants to do. I am providing all care to my granddaughter right now. We hope with the right interventions things will improve.

Some of these are not options for us but may be for others.

1. Bloom Motherhood Classes - this one was recommended by the psychiatric hospital that she attends outpatient therapy at. It is virtual, which is convenient. The Bloom team said she wasn't a good fit due to having ASD. I believe they accept insurance and have a few scholarships available.

2. Early Childhood Intervention - baby is not currently showing delays at 3 months, but my daughter is delayed and has mental health issues. We were told ECI could help with her bonding with the baby and learning basic care because mom is delayed. I am currently setting that up as we speak.

3. texashealth.org - they provide classes for a small fee.

4. nami - they deal with mental health issues and provide free groups

5. HeyPeers - they have a few free postpartum groups

6. Sharewell - they offer 4 free support groups a month. I attended a caregiving one recently and it went well.

7. Local hospitals and psychiatric clinics can help with postpartum issues. If finances are an issue ask for a sliding fee scale or scholarships or grants.

8. Pregnancy centers - the one where I live has been a huge help. They provided diapers and wipes when I wasn't able to work due to my daughter being hospitalized. I needed time off to care for my granddaughter and was low on funds. They were so nice.

Why does my daughter ask to go to the hospital and then act like she has no idea why I took her? This is the 3rd time I've taken her in after she requested to be taken to the psychiatric hospital, and then (according to staff) told them she has no clue why I made her go. I literally asked her about 5 times if she was sure she wanted me to take her, and she was absolutely sure she said. This is so confusing to me. Does anyone else have a loved one that does this? I'm so confused...

Hello. This is a sensitive subject, so please be kind.

I am the grandmother to a 10 week old baby girl. My 25 year old daughter has ASD and was also recently diagnosed with Schizoaffective Disorder. Due to her physical health and mental health, she has spent about 3 1/2 weeks out of the 10 weeks that baby's been here hospitalized. Baby and I stayed with her when she was in the hospital after the birth, obviously (she had an extended stay due to complications but they allowedme and baby to stay), and we also stayed with her when she was admitted for postpartum preeclampsia and pulmonary edema a few weeks later. I encouraged her to care for the baby during both times, but she didn't really provide any care. She said she couldn't physically handle it at that time. She also had 2 different 8-day stays in a psychiatric hospital. She was not able to see the baby at all during either of those hospitalizations due to hospital rules. I cared for the baby during both of those hospital stays. They put her in a 5 day a week program for 5 hours a day after being discharged. I am caring for baby during that as well. I also do all nighttime care even when she is home and most daytime care. She is under doctors' orders to not be alone with baby, so baby lives in my room with me. She is becoming more stable mentally as each day goes by and wants to have a more active role in caregiving. The issue is that the baby just isn't having it. She refuses the bottle off and on when mom does try to feed her. Cries and struggles when mom tries to change her diaper or feed her. Screams when mom holds her, sings to her, dresses her, etc. I mean she is crying so hard that she will shake and start coughing and gasping. When I do those things, she does fine. She also does fine most of the time if my partner does these things. I've got mom doing baby care classes. They aren't exactly what we were hoping for...more or less, just informative videos and questions and answers with a nurse. I am looking for ideas to help my daughter gain confidence as a mother and feel connected to the baby and to help the baby feel comfortable with her mother. I am aware that I may end up being the primary caregiver indefinitely if her mental health doesn't improve, but I want to try and help my daughter be a successful parent because that's what she desperately wants. She feels so bad about herself every time the baby reacts this way. I really want to find ways to help.

Things we've tried several days to weeks with no success so far...

Skin to skin

Massage

Baby wearing

Feedings

Changes

Contact naps

Thank you for reading and being kind.

The hospital administered her first injection on Friday. She immediately started complaining about an awful headache and throwing up. She's since been saying her vision is blurry and her eyes hurt. She does wear glasses but wasn't complaining of any eye issues prior to shot. Due to get second shot on Tuesday. Has your loved one had issues like this with the shot? Did they subside?

I am thinking of all the moms today who are dealing with this illness. My 25 year old daughter is currently inpatient. I miss her terribly. She is sounding much more like herself each time she calls. She has ASD as well and is developmentally delayed. She's 25 chronologically but developmentally more like a preteen or young teenager. Now that her schizoaffective symptoms are improving, she sounds like the scared kid she normally sounds like when away from me. This disorder is also likely the reason she has a baby herself (baby believed to be conceived during psychotic episode). She's missing her first Mother's Day with her daughter. She's not been able to care for the baby, but she badly wants to be a mom to her one day if able. I'm sending love out to all the mom's who are watching their kids go through this and all the children that have mother's going through it. Heck...I'm sending love out to everyone here.

I (43) feel like I've aged so much in the past few months of dealing with all of this. I'm a special needs parent. 2 of 3 have ASD plus various issues. I'm used to dealing with stress because of all that. I am now dealing with my 25 year old daughter (ASD and other conditions) having schizoaffective disorder on top of her other issues. I've posted here about her surprise pregnancy (found out at 37 weeks) and her delivery 8 weeks ago. The stress from that alone feels like it aged me. Now, we are dealing with a 3rd hospitalization in 8 weeks. I have to care for the baby even when she is here. Doctors have not cleared her to be allowed to be alone with the baby. She's struggling to do basic care for the baby even with prompting. The baby is not responding well to her when she does attempt to care for her. Baby has had some mild issues as well. My other child with special needs is soon to be 19 and very reliant on me still as well. We have no extended family, so 90% of the care falls on me. I do have a partner, but he works a good chunk of the day to support us. He does help when he is here and awake. We don't know who the child's father is because my daughter has no memory of sexual contact with anyone. Yes, we have told all medical providers that, and yes, we are aware that may indicate assault. They have had no luck reporting because she has no memory of anything consensual or non-consensual. I would normally go to therapy to help me cope, but I can't afford it now because I haven't been able to work due to suddenly having a baby in my care. I'm having trouble finding low-cost or free services in my area. I'm trying my best to take care of everything and everyone, but I want/need help with the stress that comes with all of this. How do you manage?

I am so incredibly sad. My normally shy, sweet, very passive 25 year old daughter has been diagnosed with Schizoaffective Disorder Depressive Type. She has also been diagnosed with ASD since a toddler. She's been having paranoid thoughts since Friday. Saying people were knocking on our door to come hurt her. Saturday, she started saying we are her enemy and trying to control her. She also said she was having vivid "dreams" as she calls them about the trees attacking me and her step dad and killing us. She then started telling me this morning that the inpatient doctor told me she might hurt me and to be cautious. I never met or spoke to that doctor. She wanted me to tell the PHP doctor. I couldn't reach the doctor, so the PHP therapist said to take her in for an evaluation. They just came out and talked to me and said she didn't know why I brought her there. Waiting to see what happens. I hate this disorder with a fucking passion!

My 25 year old daughter with ASD was recently diagnosed with Schizoaffective Disorder Depressive Type. She was inpatient for the first time for 8 days and released and put in the PHP this past Tuesday. She is STRUGGLING with this program. She made it about an hour the first day and then became so overwhelmed that she was shaking and crying and then started vomiting. The next few days were the same. Then, on Friday, she was so upset that I thought they may recommend going back inpatient. She's having to take her rescue medication the max allowed amount to get through the day. It's difficult for her to explain what she's feeling or why with her ASD. Do your loved ones find this type of program difficult? If so, have you or the staff found anything to help them get through it? So far, all we've been able to figure out is that the number of people in the program is upsetting her. Are these programs just difficult in general for our people? She's supposed to go at least another 3 weeks and then transition down to the IOP, which is 3 days a week. Her personal mental health doctor and therapist want her to complete these programs before they see her again. Do people tend to adjust more the longer they go, or is it just not a good fit for some people? I will add that she is 25 but developmentally much younger. She is extremely attached to me and had a very hard time being away from me while inpatient. She wants me to be with her all the time. She actually tried to get the hospital to sign me up for the PHP with her. I have been having to sit in on her private therapy sessions for a while because she gets so anxious about me not being in there with her. Could this all be due to separation anxiety? Any insight or advice to help her through this is appreciated.

Thank you