Shocked and GRIEVING... in pain

[suzeeJ]

Hi

Thank you to those of you who have responded to me as a newbie. If anyone has a little time for me... .

... .I am soo new to all of this, but not new to sadness, trauma and loss.

I am actually a mother of 4. My first was born with Cerebral Palsy and severe health issues. When pregnant with our fourth child, my significant other - after a rollercoaster of what I only much later understood as emotional instability - abandoned us.

My first d was always at home with us, and the care, hospitalisations, the struggles are indescribable. My beautiful child passed away 8 years ago, at the age of 12.

I cannot begin to describe the pain... .still... .

Perhaps this is partly what contributed to my second child, the BPDd's issues. She grew up just 2 years younger than the first. Probably in retrospect - she grew up with so much stress and fear around. But so much love too, that's what I could never understand.

Point is, she showed problematic behavior from a very young age. By 5 she was clinging (when her father left), filled with anxiety, had problems going to school. This spiraled into such severe fears, she began to hallucinate and have night terrors. Crying a lot, fighting a lot, yet also shy, the list goes on.

I took her to a Psychiatrist at the age of 5, and he diagnosed her with Bipolar.  People told me that's ridiculous, and no doctor could ever diagnose such things at such at early age.

My attentions were demanded by the eldest, by the second, by the next one 2 years younger, subsequently diagnosed with ADHD, and the youngest four years younger. Can't say my plate wasn't full !

My pain and grieving has been so unbearable over the years. However, I kept my hopes and belief up with the other 3 kids, and never ever stopped doing my best for them. The youngest has adjusted the most, is 12 now, and probably is coping best of all of them, with school, friends, life. The third child, now 16, still goes through a lot of emotion, but for the most part is well-adjusted, does fine in school, socializes, and has good coping skills.

The BPDd however, since that time she was 5 and diagnosed with BP, continued to spiral out of control. Even with supportive therapists, doctors, teachers, my endless efforts to help her with anything and everything possible, just didn't seem to be improving.

I myself in the meantime, took unbearable strain. I entered my own health problems, and was eventually hospitalized with heart failure. I DID recover, although I do have a chronic heart disease, and I am beyond exhausted.

By 10 years old, my BPd was screaming out of control, smashing windows, cutting herself, and urgent medical attention was needed. She would not leave my side, I just had to hold her all the time, she was terrified I would die. She started to obsess and have phobias, and have fears about everything possible under the sun.

She would not leave me, even if I walked to the next room she'd follow me. Needless to say, I was just so confused. I had family telling me that doctors get things wrong, that the child is just very anxious and needs a lot of nurturing. Yet she was falling out of school, refusing to do any studies, crying more, NOT wanting to go to friends then crying that she had no friends. I was so confused I did not understand what was going on.

I never stopped trying... .we talked, I held her, we went to try all sorts of  things, special activities, quality time, I tried to help her follow any dream she had, ballet, dance... .  but it all constantly came to nothing, as she'd cry and refuse to continue.

The more she fell behind in schooling, the more new schools refused to take her in - she refused to be in any "special needs" program, claiming she is not "special needs". She never could learn properly, she won't read or anything. She's been in and out of learning schools, just sitting in her own world of fantasy.

Through ages 10 to 16 she was rejected by schools, and whatever opportunities she did have, she couldn't stick to. She is mostly socially rejected. She hides behind gothic themes, and pics of skulls and graves and horrifying looking creatures. Finally last year a school took her in, to try to study towards her high school graduation. But she had anxiety to leave the house, anxiety to take the bus, anxiety to have any academic expectation and the list goes on.

It was only 6 months ago that on one of her arm-cutting meltdowns, screaming and crying that she doesn't understand what's going on, that I took her (after once when she was 10) to a hospital for help, as I too, didn't understand. She was there for 2 weeks. This is when she was diagnosed with BPD as well. I didn't even know what it was. I got into looking things up immediately. I cried and cried and cried and cried and cried !

I have to add, that if I hadn't re-married in 2007, and been blessed with supportive husband I have, I would have completely collapsed by now!

I have been in terrible shock. I am still in shock. How could my first child have died. DIED!  After all the love and joy, and fun, and how hard we worked even though she was wheel-chair bound and 100% dependent on me. Even though she could not walk or talk, and have very partial sightedness, after ALL THAT TRAUMA, she died !

And this ... .6 months ago when I got this diagnosis for my second child, sent ME spiraling into shock and grief. My family tries to be supportive to me, but there's not a lot they can do.

Only today, I went in to the school, to be told - very, very gently - and in a very subtle way - that my BPDd is not learning, that she can't sit in high school through age 19 and 20, clearly learning nothing. AND of course - only going like twice a week.

I am shattered, I am broken, I am lost, I am in so much pain - my soul is in agony. I realize I am grieving. I am grieving SO BADLY.

And I can't show it. I have to be "strong" for my BPDd.  The other also need me to be strong for them. They can't take the BPDd's breakdowns and meltdowns, crying and depression, they think she takes far too much of my attention and time.

I don't know what to do. How do I even BEGIN to try to survive this?

Thank you for listening

Our objective is to better understand the struggles our child faces and to learn the skills to improve our relationship and provide a supportive environment and also improve on our own emotional responses, attitudes and effectiveness as a family leaders

[bpdmom1]

Thank you for sharing.

Big Hugs to you!

[DearBFF]

I am so sorry to hear your story that you and your family are all suffering especially your daughter.  I have absolutely no experience with a situation like yours so I can only make suggestions, but no real advice, which I am very sorry about as I wish I could do more.

I would say first and foremost you need to figure out if you can help your daughter?  Do you think it is in your power to help her?  If not then I would suggest you map out the scenarios and see what can be done now, especially since if I understand correctly she is still a minor.  In a way, this can be a good thing because that means you still have some control.  The truth is she will probably hate you for trying to get her help, but the damage and toll her behavior takes on your family is not something that can just go on indefinitely.  At one point or another, you will all cave and once she is an adult behaviors may become more extreme because she can do whatever she wants and you can do very little about it except cut her out of your life completely if you cannot come up with a plan to keep everyone in the family stable while she is around which would be a huge feat.

First and foremost, the behaviors need to be dealt with and she needs to learn how to cope with them as does your entire family.  If everyone works together, along with some mental health professionals perhaps a place can be reached where you can all coexist.  The family can get help to under what is going on.  Your daughter can get help understanding what is going on to her, inside her, which must be challenging and frustrating to a young girl.  Once she is seeing a mental health professional regularly, perhaps they can help with other services, recommend studies/groups she can become a part of in order to find places for services.  On one hand forcing someone into treatment has lackluster results, but on the other hand, right now it may be the only option to try to hold onto your sanity and some peace for the rest of your family, and as she learns to work with all of you, peace for your daughter as well.

Again, I do not feel I can offer much of real value not having been in this situation myself, but I hope it has been helpful in some way. 

I wish you and your family luck!

I am one who always holds out hope that there is peace somewhere down the road, even if it takes a while it can be reached.

Take care 

[suzeeJ]

Hi BFF

I really appreciate your time and suggestions. She has recently started therapy, and thank goodness looks forward to her weekly visits. That has already made a change for ME, feeling at least there is one other person, who even if only one hour a week, can give me a bit of a breather from the intense heaviness.

It's hard to become in family therapy... .maybe you can give advice here. The 2 younger kids, as much as I tell them not to say cruel things, when a fight DOES break out in the house becoz of the BPD, it can get out of control and becoz she can lash out and say things she can't even remember saying the next day (!), the other 2 give as good as they get... .they lash back out, they call her names and tell her there's something wrong with her and she should leave, (and much worse). So I need to hold back in how much information I actually give them, as in an outbreak, they will use it against her. Which has damaging effects for her of course.

So that makes me want to hold back from including them in any sort of discussion, and it's REALLY difficult. Do you have any kind of experience with this?

[DearBFF]

suzeeJ, I am so glad to hear that your daughter has started therapy and looks forward to her sessions.  That is so wonderful!    Out of curiosity, I would guess they received the medical history and diagnosis of Borderline from the hospital so they know what she is struggling with?  While I would not wish the struggle on anyone to know so young, her outlook is going to be much brighter as she continues with therapy.  I read so many stories of those who do not find out until their 30s, 40s, or even later in life.  They have wondered for decades what was wrong and why they couldn't maintain close relationships.  To know so much earlier will truly start her headed in the right direction.    You go mom, and her too for sticking with the therapy!

I don't have advice about the family therapy aspect, unfortunately, as I have no experience with it.  Out of curiosity, what do the younger kids understand about their sister's BPD?  I know once I learned that BPD is most likely what my best friend struggles with I felt like a weight had been lifted.  It was much easier to not take things so personally.

Some suggestions:

• The Medium Chill post might help them out as if they can keep from responding strongly then they can slowly back out of the situation and, over time, learn to spot them as they begin.



• Also not sure of the links on here, but maybe a moderator can direct you to all of the wonderful acronyms that can be used to help remember helpful ways to react to someone during a BPD blowup.



• The younger kids, and even your daughter, might benefit watching some videos on what BPD can feel like for someone struggling with it.  For your younger kids I am guessing their reactions are due in part to their hurt feelings, but also because they may not understand what it feels like for their sister.  For me, understanding what is behind my friend's outbursts helps me see the situation differently so I can understand what it is like for her.  For your daughter, it could really help her feel less along as she may not know anyone else suffering with DBT so to watch a video of people she's never met talking about BPD, their stories or in general, really might help her.  Of course, it could also make her feel bad about herself or trigger her, so as a mom you'll have to figure out what she might find helpful.  You can find some great videos on youtube by searching BPD and how it feels or what it feels like.  Here is one of the best ones: https://youtu.be/VfClqztNZEI



• DBT, dialectical behavior therapy, can also be helpful not just for the person suffering with BPD, but also for the family members and friends.  This is by far the best DBT video I have ever seen, https://youtu.be/Stz--d17ID4 and I really enjoyed this DBT for teens book that we found at the library.  It might be a helpful read for you as well as your two youngest, maybe even your daughter would enjoy reading it.  www.amzn.com/1626250529



• One great thing I have found for myself is mindfulness.  It is actually a DBT skill, but I find that when I ground and become mindful I take things much less personally so my reactions are more mellow and less dramatic so I do not fuel her negative emotions.  At some point, she stops when she doesn't get the reaction she wants and lets it go.  This makes confrontations and disagreements much shorter.  You can do some google searches for mindfulness, specifically for kids and BPD.  Once they realize it is not about them, they can let things go and not feel the need to respond.  This book is great for explaining mindfulness to kids (and grownups); we actually found a copy at our library.  It specifically talks about mindfulness meditation but it can be used in the moment as well to center and get calm so they don't feel like it's spinning out of control.  www.amzn.com/0807549088

I hope something in there was helpful to you.  Take care and know you are doing the best you can with what you have right now, just as your daughter is also doing the best she can with what she has right now, as well as your other children and your husband.

I wish you and your family a great week!

[Kate4queen]

My second son was born with cerebral palsy, the spastic diplegia type so for him it was mainly a physical learning to walk issue. I spent many, many hours with him in therapy, hospitals, IEP's team meetings (you know how it goes). I carried in on my hip until he was 4 and started to learn to use a walker. But this son is the one who developed BPD. I also have 3 other children who had to deal with being very much in the background as we dealt with son #2's overwhelming needs. So it was a bit of a nightmare.

From my experience I'd say maybe not only do family therapy together, but allow your younger kids to be seen independently of you. I found my 3 wouldn't say anything bad about their brother or their parents in front of us but did bear deep resentments etc which still occasionally erupt and have to be talked through by all of us now they are adults.

Having gone through all the trauma of having a disabled child, all the grief and guilt and then having to go through it a second time for his mental illness was devastating. I can only send my deepest sympathies and tell you to hang in there.