Visit Amanda
I have written a guest post for Amanda Wang’s blog, The Fight Within Us.
The most amazing thing about Amanda is that she is training for the Golden Gloves in 2011! Wow!
Amanda also runs RethinkBPD which is an independent documentary, website and social movement bringing the most in-depth portrait of Borderline Personality Disorder to the public.
Amanda asked that I write about what keeps me going as a mother of a child with BPD. I only focused on one special aspect of my “fight within” that I rely on to keep me going. I didn’t mention the obvious – that I love my daughter with the intensity of a thousand suns, that my love for her is more plentiful than all the grains of sand or that I just simply don’t seem to be able to turn my back. I have tried but the moment my daughter needs me, I am there – in near mindless flight, at the drop of a hat. I am there. And, this will probably never change.
That guest post was beautiful Kris. Really well written and very moving. x
thanks,
xx
Kris,
My daughter just got both SSI and SSD. It took 4 years after we applied. The judgement was last month and she will not see any money until another 2 months. She will get back payments from the last two but not 4 years eventhough we prevailed. The money is not much since she never really worked full time.700 per month. Feel free to write me at my email if you want to discuss this more.
You need a lawyer to help you from the beginning. Many will not take the case until you have been rejected but the paperwork is a bear. You will not be charged unless the attorney wins the case. This is great incentive for them to win. Your daughter does not have to go back to the hospital. She has already been hospitalized several times. She probably does have to see a psychiatrist from now till the settlement to support her claims.
I could not have done this paperwork and nagging of the hospitals and doctors to send records myself so I do not think your daughter can either. Eventually, she will win this claim. Then she will get medical insurance as well as the monthly allotment. This does not solve even one quarter of your problems but it sure is a contribution.
I do not think that a state hospital would keep her unless she kept trying to hurt herself. As soon as she acts right for a day or two they send them home or on the street. They are supposed to find a place if they do not have family but don’t believe it. Sometimes they do but many times they do not.
One great thing about NYC is that she is in the city and state with the most social services in the entire country! Florida and New YOrk have spent the most money on mental health.
http://www.800lifenet.org This is the link to mental health services in NYC. You can search their under homeless issues and drop in centers. A few of them offer legal services as well. I imagine they are for indigents only but they might be able to direct you if you talk to them.
Your guest post was wonderful….just like you. You’ve been a huge blessing to me, please don’t ever stop writing!!!
PS I tried to leave a comment there but was unable to. Too bad everyone doesn’t have a mother like you – mentally ill or not – your love and devotion are something that makes a person feel valuable and I think too many of us grew up without that.
Anna, thank you so much for taking time to write this all down. We have started this process innumerable times and screeched halt because of some paperwork snafu or another. We only tried that one time to get it done with a lawyer (the time I mentioned with the conference call, which, incidentally, he charged us dearly for). How did you find a lawyer? Did you use Binder & Binder? I am tempted but it looks like such a schlock operation.
I am glad to hear that my daughter at least lives in a city and state with the most social services in the country!
I will use the link to the mental health services in NYC. Thank you so much. I know that it will take time but we are talking about a young woman who will need help for the rest of her life.
I did have a couple of specific questions. My daughter hasn’t held any job for very long. Are all payments based on what the recipient has put into the system? Are there any exceptions? Clearly mental health issues get in the way of people working indicating a need for more financial support.
Also, does she ever have to reapply?
Again, Anna, this was very helpful.
Thank you,
xx kris
You are so kind. Really, Barbara, the blogging world has given me a whole different perspective on our family’s situation. I was so cocooned into our secret world for so long, it is a relief open the doors and find an honest voice to say it like it is – and, then, a gift to have such concerned and committed readers to my blog.
My daughter has told me too many times that I screwed up her life. But, yes, you are right, I am devoted and continue to love her. But, I have to admit, it feels good to hear from you that maybe I am not so bad…
Thanks for reading and caring,
xx kris
Well written Kris. I am amazed at how the trend in psychology is to still blame the exhausted parents, particularly the mother, and encourage the chidren to do so for every mental illess. For BPD we invalidated them. The invalidation of the parent who is trying so hard is unbelievable. The mom is usually the main one in the trenches, desparately pleading with the schools to help their unfocused and “odd” child succeed, trying hard to foster peer friendships for the rejected child, taking the brunt of the misbehavior, accepting the unacceptable, holding the sobbing daughter until 4:00 AM to try to prevent the self abuse, staggering to work a few hours later to provide the much needed health insurance, jeapordizing her job with the endless need to be out for emergenicies, hosptalizations, therapy visits, pharamacy runs, treatment centers, scourng the internet for answers or new treatments until 2:00 AM, all while enduring the raging accusation of the ill daughter and reading the material on her latest diagnosis that say the roots may lay with poor parenting. It is a wonder that any of us are still standing. But as you so well put it, we have to. Frustrated as we get, hurt, blamed, exhausted and worrying about whether we are doing more harm than good, we dust off and march on. It’s not a martyr wish either. It is an instinct to protect your young and see them survive in the face of every adversity. I hope one day the psyzchiatric world will understand as they have with schitzophrenia that more often than they think today, parents didn’t create this terrible illness—–they reacted to it they best they knew how from the start. First with trying to parent the out of control child and not knowing what is causing it (obviously making mistakes in the process by trying to react as you would with a well child), then with Herculean efforts to find the right help and being there at every crises. You spoke well for us all Kris. Thank you.
Yes. Yes. Yes. Exactly. I am going to write today about the stigma of mental illness and we poor parents who are struggling to maintain a semblance of a life – despite it all – while care-taking. I will refer to your comments. You and I are really in the same boat. I know that we are not alone, but where are the other people raising children with BPD? Not reading blogs because they are too worn out by their lives? Or, having accepted the blame, submerged in grief and self-medicating, I am afraid. That is the typical story; family dysfunction and illness caused by stress is pervasive in our community.
@anna
http://www.njdisabilitylaw.com Kathy Brackin My attorney who we saw three times. No charges unless and until she wins including consultation. This is really true. She is very very calm. You can not shock her but she is also very very undemonstrative in her own personality. She is not unkind just not expressive. It can be a little disconcerting.
If you apply before she is 22 then she is called a disabled adult child. She will get part of your SS when you retire or die. It seems that the government expects us to contribute until that time. We expect to also but it is very hard on families that are just making ends meet. This will not subtract from you SS only add to hers.
Let me know if you decide to come to Williamstown. I will meet you for coffee if you are up for it. SSI goes for the entire country. YOur attorney can be anywhere. Even in your home town.
Kris, I left a comment on the new post from today that says the same thing…I am not a broken record…its just so clear every time I read your blog that you have gone above and beyond what many parents would be willing to do. I’m sorry your daughter says things to hurt you. She may never realize all that you’ve done and that not all parents would be so willingly and supportively help her. But you know.
My daughter is 25. She will be 26 in September. I am really thankful for this information, Anna. I didn’t realize that I could get a lawyer here in MN to handle this case. I thought that applying rules changed state to state. In fact, a lawyer here in MN told us that when we first began this over a year ago. I still might make it to Williamstown. We’ll have to see. If my daughter has to have the surgery, maybe I will go out east. Or, dreaded thought, she will come here. We should tackle it then.
Thank you for sharing your expertise on this complicated subject,
xx kris
I only did this once so I am not an expert. I am sure if you call Kathy or email her on her website that she will tell you where you can apply. I think it is anywhere. Also, I would put your address as her permanent one so they send the paperwork to you and your attorney. A disorganized person could never handle this ton of paperwork and deadlines!
If a mentally ill person has done this alone, I am really surprised. It would take a very devoted and organized third party to do it for them.
Kris, I think most parents with a BPD child go through the same grief processes as a person who loses a loved on: shock, denial, a feeling we will beat this thing, anger and depression and finally some acceptance. It is a long journey that takes years. Most of us are also terribly embarrassed at first as everyone who isn’t living the lives we do offer unsolicited advice about how the young person is manipulating us, it isn’t real, and they are a bad person. There is a reluctance to go public with ones friends and family that may well also engender fear of posting material on the internet for the world to see. My guess is that many parents do not even know that this sort of support group you started even exists. I found you be accident one night when in the depths of frustration did a Google search about BPD daughters and how parents could help them. Somewhere on page three or four buried in a comment by an equaly stressed parent was a link to your site and a testimony about how helpful it has been to read your postings. I suspect more parents will do the same as they gain more acceptance of the condition and seek for better answers than the DSM and relatd articles on the subject. We need practical guidance, support and to feel some community from other parents, not blame or more articles on how many criteria the patients meet support the diagnosis.
Thank you anna,
I have only stumbled around the starting blocks. You got out of the gate and finished the race. From what I have heard about the process, that is a huge accomplishment. All your information has been very helpful. I will contact Kathy and try to get started again.
xx kris
I started writing the blog with no idea how to get readership. I still don’t know the ins and outs of how the searches work and I wish I did. Because you are right, there is a much bigger community of people dealing with spouses and children and friends who are struggling with mental illness and do not know where to turn.
When we set out to find help for our daughter, I was completely alone. Totally without a sounding board. The process was so devastating to me and my daughter, that I would like to spare people from the pain we went through. We were at the mercy of hospitals and doctors and people who called themselves doctors, who were actually social workers – you name it. I looked to each one like they might have the key. No keys. Lots of drugs. Lots of well-intentioned therapy mixed in. But, basically, I want to warn parents who trust in every idea that is throw their way.
Mental illness is pervasive throughout our society but it is still shrouded in disgrace and humiliation. But, isn’t it amazing when you open the door a little?
Yesterday I was at the dog park and a man whom I know – Bella’s dad – asked what I do. I told him I write. I never volunteer about what at first. When he asked, I said that I write about mental illness and he said, ‘”I have some of that!”. He wasn’t joking. And, off he went. This happens all the time.
An agent once asked me who I thought my reading audience would be. I answered “You and probably most of your neighbors. There is lots mental illness out there…” I think she thought I was being flippant. But, I wasn’t.