Feeling hopeless and heartbroken

[Anonymous]

Would her school have any recommendations for good residential programs? And you can't take care of anyone well if you're mentally drained. Like how you have to put your own oxygen mask on before your child's on a plane. Are you in counseling for yourself to deal with this trauma? How much of her care is done by you versus your husband? Could you be the one to spend time with your neurotypical child while he deals with your symptomatic one?

[Anonymous]

Anonymous wrote:OP-

She does go to school 75%-80% of the time, always with a fight. She attends a non public special education school for students with behavior needs. After the pandemic we have been through public, private, public with special education supports, and two non public schools. That has been a whole other exhausting experience.

I work a full time job.

I have started to research residential treatment and/or therapeutic boarding schools but it is very scary, especially after the trauma we experienced with her hospitalizations.

OP, I know of two families who have used this school and felt it was effective and compassionate. Unfortunately for one family, once it really started to work insurance stopped paying for it because the child was no longer having behavioral episodes (the wonderful Catch-22 of "medical necessity" for mental health services). They tried to pay privately for a while but just couldn't make it work. https://sandhillcenter.org/

They did end up relinquishing custody for a time so that their state provided residential treatment elsewhere. I know others in this thread have said this is a myth, but I wonder if it's actually more state specific as this person is not in DC area. Or maybe it used to be true and no longer is as this was about 15 years ago.

[Anonymous]

Dear OP - I cannot say how deeply sorry I feel for the life that you have. One can only ask: why? Why you and your family? I am so terribly sorry. Know that you are a true hero for choosing to stay with your violent child while allowing your other child and husband live in a different location. You are a hero and/or an angel.

I hope I won’t offend but I wanted to ask: Have you been told why your DC exhibits such violent behaviors? Has anyone said what is the underlying reason? Has you DC been simply born that way?

[Anonymous]

Anonymous wrote:I'm so sorry OP.

Was the internet restriction a consequence/punishment?

Does your child like to read? Are there e-readers that aren't browsers that could give her access to books without you needing to monitor web use?

The internet is addicting but also can help someone calm down and avoid intrusive thoughts. I am naively wondering if you can use books for this purpose.

NP dealing with similar. Thank you for the ereader suggestion. It's a good one!

[Anonymous]

Anonymous wrote:I have no advice for you, OP, just a lot of sympathy. You have no good options and that's heartbreaking. You have to make the decisions that are best for your family, especially your other DD.

I hope you have a counselor to help you. I also found an SSRI to be incredibly helpful. I didn't have to spend so much of my energy on my own emotional regulation and could direct it elsewhere. Hugs.

I also finally went on meds and agree so much with the bolded explanation of why it helps. I could still feel everything but the extreme bads were less extreme, and I could think more logically and was less exhausted and drained by my own emotions.

[Anonymous]

Anonymous wrote:

Anonymous wrote:OP-

She does go to school 75%-80% of the time, always with a fight. She attends a non public special education school for students with behavior needs. After the pandemic we have been through public, private, public with special education supports, and two non public schools. That has been a whole other exhausting experience.

I work a full time job.

I have started to research residential treatment and/or therapeutic boarding schools but it is very scary, especially after the trauma we experienced with her hospitalizations.

OP, I know of two families who have used this school and felt it was effective and compassionate. Unfortunately for one family, once it really started to work insurance stopped paying for it because the child was no longer having behavioral episodes (the wonderful Catch-22 of "medical necessity" for mental health services). They tried to pay privately for a while but just couldn't make it work. https://sandhillcenter.org/

They did end up relinquishing custody for a time so that their state provided residential treatment elsewhere. I know others in this thread have said this is a myth, but I wonder if it's actually more state specific as this person is not in DC area. Or maybe it used to be true and no longer is as this was about 15 years ago.

My aunt and uncle did something similar with my cousin (their oldest child). I was a young teenager so wasn't paying much attention to how it was done but my cousin was probably about 10 and was at a residential facility for probably 6 years. He was a ward of the state during that time. This was in the midwest.

[Anonymous]

I am in a similar situation though my child is younger, but very large for his age and fast and strong.

The only thing that has helped me was quitting my job, while maintaining our childcare infrastructure. So I can administer our life and take care of myself during the hours I used to work.

It has put my family into financial ruin though, and won’t be sustainable long term. But the break has helped tremendously. And DS is doing better because I’ve had time to do more therapy. I took an ABA class for parents which helped a lot.

Is FMLA an option at your job? Just to give you some space to cope and rest and if you’re lucky get things on a better path but that’s probably too much to expect in just 3 months.

[Anonymous]

Read _Brain on Fire_ by Susanna Cahalan

[Anonymous]

OP - thank you for sharing your own stories, it does help to know there are other people going through similar experiences.

In response to why this is happening to our daughter- we don’t know. I can say reflectively that she has always been disregulated, even as a newborn. Even as a toddler her tantrums were more extreme than a typical peer but easier to write off as normal development. Her doctors and treatment teams have not identified a reason but rather diagnosis.

I have thought about taking leave from my job and have had to take short term leave during both of her hospitalizations. My job though is the only place I can feel somewhat normal and is something I really enjoy. It is an escape for me. I also realize that I may have no choice soon, especially now that my other child and husband need to be in a different location.

If anyone has experience with a residential treatment or therapeutic boarding school please share them. This is something we are exploring but it is a very scary thought. I don’t want her to go somewhere that causes more trauma.

Weekends are hard and this thread really helped me get through yesterday. Thank you!

[Anonymous]

If you are looking at residential, the first question is how will you pay. Back between 2018 and 2020 when I sent my son, cost was $650 a day. Rate remained at the 2018 rate throughout.

Payor source is key to determining your options.

The program we used wouldnt work for for two reasons. They don’t take kids as young as yours and because I used a program that was an outdoor hybrid type program and you seem to be wanting something more like a dormitory touchy feely program. Both are therapeutic but My kid was older and we had a short window so we felt we needed to go directly to that sort of program.

I hope today is a good day for you.

[Anonymous]

OK OP, I AM USING ALL CAPS NOW BECAUSE I JUST READ YOUR UPDATE AND YOU DIDN’T MENTION WHETHER YOUR CHILD HAS EVER HAD A BRAIN SCAN, BUT YOU DID SAY SHE SOUNDS EXACTLY LIKE MY CHILD, WHO WE FOUND AFTER A SCAN HAD AN ARACHNOID CYST ON HER BRAIN, HAD IT DRAINED, AND THEN WAS A CALM CHILD.

Please get her an MRI or CAT scan. Please!!!
She might have a very fixable physical injury in her brain. Residential schools can’t fix that. A surgeon can. Please check.

[Anonymous]

For what it's worth, we found stimulants made our kid more emotionally dysregulated but guanfacine er made him much calmer. If you've tried non stimulants already, I would consider a mood stabilizer. If your current psychiatrist doesn't seem to be listening about how bad things are, maybe a different one would be more helpful. I'm so sorry you're going through this.

[Anonymous]

Does your child take an antipsychotic? That helped reduce the aggression with my DC significantly.

[Anonymous]

Why are you alone with her? Why isn't your husband?

[Anonymous]

She currently takes abilify, Zoloft, guanfacine, and trazadone.

As I shared in my original post we as a family have made the painful and heartbreaking decision that our other child needs to be away from our daughter to avoid any additional trauma to him and his development. My husband is with him and I am with my daughter. It is heartbreaking for my family but I don’t see another option and have to protect my other child.

I did share that I did take her to a pediatric neurologist but they only did an EEG to rule out seizures. It took a lot of advocacy and really begging to even get that appointment but based on the comments I will go back to her pediatrician and request an MRI.