Catching Up

Oh, I have been a bad blogger.  So sorry.  Work has been absolutely crazy, a lot of stress and tension over budgets and thus over whether we have jobs.  Plus I have a new class of prospective foster and adoptive parents beginning their journey, so that has been and will be intense.  We have an awesome class, 15 families are starting out, I am hoping that about 12 will finish and become certified homes.  That would be great, being able to place 12 kids in the first quarter of the year!!

At home things continue apace.  Doug went down to court with Brooke and full guardianship was granted to the state.  We will petition to take over guardianship, at least of the personal not financial aspects, in 6 months.  It has been a long road with her but things are looking a lot brighter.

Annie, on the other hand is a hot mess.  Doug and I traveled to see her over the New Year's weekend and she is not doing well.  Her seizures have increased.  Her weight is ballooning, she gained 11 pounds in a one week period, and it is all from overeating and not moving around.  Her placement is in total jeopardy, her Medicaid was cut off on Dec. 31 and no placement in at all interested in taking her on the long-term Acquired Brain Injury Waiver that we were so es tactic about receiving.  The main reason for their reluctance is how much of a flight risk she is.  So we go around and around, calling this state agency and that ombudsman office and never do the right hands know what the left hands are doing. Frustration, fear, anger, hopelessness, determination and exhaustion would about describe my feelings about all this.

I had one adult son get to experience jail time for his poor choices about what to do before one drives.  I am hoping it was an educational experience and may serve as a wake-up call.  Some folks are terribly hard-headed.

Douglass is off to Texas to see his girlfriend again.  That relationship really worries Doug and myself as the girlfriend is extremely manipulative and uses a lot of emotional blackmail.  Douglass does not really have the capability to handle that well at all.  We also are concerned about how immature and self-centered she is.  But he is what passes for an adult these days so we try to remain supportive and carefully point out issues in ways that hopefully will not alienate him.

More on Kendra and Dancing Baby Girl and anything else interesting later as I must get Kendra off to a dance competition.

What a Christmas Present!!!

I haven't posted much about our funding problems with Annie because it has just been too life sucking.  Suffice it to say that we have been doing the Medicaid denial of funds and subsequent appeal dance for the last few months.  We have called in favors from our network of social service folk, and we have talked with our State Senator and Representative (or at least their minions).  But we were really scared.  We cannot let Annie come back home because she is too dangerous to the other people in the home, particularly Kendra as she has intense jealousy towards her and has physically attacked her many times in the past.  But there didn't seem to be anywhere for her to go, I am not sure even homeless shelters would take her.

Well today the official sounding knock came at the front door and I was required to sign a certified letter for Annie.  We opened it and to our surprise discovered that Annie has qualified for the Acquired Brain Injury Waiver.  This is a new funding program and there were only 50 spots funded for this year and Annie got one!!  Some one is looking out for her, her guardian angel pulled some major strings.

With this funding stream we can now seek a residential/group home style facility for her much closer to home and one that will meet her needs for brain injury rehabilitation.  This funding stream was created to fill the hole between children's services which end at 18 and adult services which don't start until 21.  It is totally amazing that Annie got funded.  I mean, I am not saying that she isn't in desperate need but so are so many others.

The weight that has been lifted from our shoulders is immense.  I feel like we can be happy at Christmas now.

There is still a lot to do, we have to find a case management agency and then start investigating programs.  There is one we have in mind but we don't know if they have an opening or if they would consider Annie given her issues.  But it so much more hopeful to know that now we can start looking for a home for Annie rather than worrying about her being homeless.

Our prayers have been answered and now there are just the ton of details to deal with, but I am not  complaining.

No real changes

Nothing much has changed in our situation. We are working with the state level politicos to try to get some traction on the Medicaid people. But mostly today has been spent with no news, no call backs, no progress.

I am feeling a little better, I made it through work today, got some chores done and even had enough energy to make scalloped potatoes for dinner. So hopefully tonight will be better. I am actually afraid of the 3 AM wake up (involuntary but habitual) but I am hoping I can tamp the anxiety down enough to make it through.

I still feel like we are running around in the maze with no exit and no cheese reward either! But the shock has worn off enough that I am not quaking.

Thank you everyone for your wonderful and sincere responses. One of the only thing that helps is knowing that there are people out there who understand and who are not judging me or my parenting. Thanks for the support, I am sure not getting any from the real live helping professions people who are all about making her mental illness my fault. Even though she came to my home at 19 months, she was already a victim of Shaken Baby (thus the Acquired Brain Injury), a victim of maternal alcohol and drug abuse while in utero, a genetic carrier of bi-polar, ADD and schizophrenia, and one of the most severely abused children the state had seen in a long time. We tried hard, but that damage can not be loved away no matter how hard we tried. And yet my parenting is the only cause of her issues as far as the SWs, psychiatrists, therapists, crisis interventionists, and residential treatment center staff are concerned. They only reinforce Annie's view that none of this is her responsibility and justify her extreme targeted anger at me.

one of the calls we have been dreading

Well, today is the day, Annie's funding for her placement in the brain injury rehabilitation program has been denied and she needs to go somewhere else. Her case manager helpfully suggested our house. That is not an option at all, those bridges were burned long ago. Now if her behavior had in any way changed while she was in rehab, maybe we might consider it, but she is still doing all the things that we cannot tolerate in our home. The main one being verbally and physically aggressive to peers and staff. We will not put the younger kids at risk again, been there done that, not going there again.

I know some of my readers might not be able to relate to that harsh a stance, but I also know that there are a number of adoptive parents with mentally ill young adults who completely understand the bind we are being put in. Everyone would just like to assume that of course she could come live at home again, but she is 19, she knows she is an adult and in her clouded thinking she knows that she does not have to follow any rules or be responsible or respectful to anyone at all. Some of our young adults have moved home for awhile or stayed a little longer after high school, but always with the agreement that they would follow house rules and we did not have to worry about #1, #2 or #5 being a physical danger to anyone in the house.

So what options are there besides a homeless shelter? I don't know if she would consider Job Corps or even if they would consider her. I don't know of a lower level of care that would also include residential treatment. Basically Medicaid is saying she is capable of living on her own, but she has no job, no skills to find one, no way to manage her money, no sense of how normal people live (by normal I mean the act of paying bills on time, not buying what you can't afford, not trashing the apartment or house you are living in, not letting others come to live with you who are not on the lease, not having continual wild parties to which the police are called, etc, not having days' long highs so that you don't remember to go to work or anything else, not physically assaulting people that you think have dissed you, not verbally threatening anyone who tries to redirect or help you including police officers)

I love my daughter, I especially love my memories of my daughter when she was younger, I worry about her, I try to smooth her path when I am able by researching services, helping her apply for SSI, etc. But right now I really can't stand to be around her because she is either druggged up or boozed out, sober but manipulative as hell, or angrily blaming me for her life to the point of physically assaulting me.

We haven't given up hope, there is a Brain Injury program in our city that might take her. It would mean she was a lot closer to us (not good from the safety side, but good from the point of view of trying to develop some sort of adult relationship with her) but also a lot closer to the places she used to run away to where she knows how to get the drugs and alcohol. Would she stay in the ABI program since it is not a locked facility? your guess is as good as mine. We could try. We just keep on trying, hoping that maybe something or someone will reach Annie and help her find a balance where she can live without endangering herself and others.

Boy has this ratcheted up the all ready tense level of stress in our home.

Annie Called

Annie called last night. Hadn't spoken to her in at least a week when she hung up on me because I refused to take responsibility for all her problems. Had a pleasant enough talk, although there is little or nothing to talk about, her life is at a standstill until she gets her act together to earn a higher level so that she can get community access fora job, school, etc. She is in a residential program for folks with Acquired Brain Injury and she keeps doing really dangerous stuff like AWOLing to party, etc.

It is hard to stay connected to her. I love her, she is my daughter, but I can't do anything for her or help her, cheer leading on my part only seems to sabotage any progress. She is 19 and needs to figure some of this out for herself. She still doesn't accept that she cannot come home but due to the dangers to others in the home we will not allow it.

We just go around in circles, have been doing it for years. I wish there was a magic pill, therapy, anything that could help my darling. For a number of years Annie was my favorite child to hang out with doing errands, cleaning the house etc. We had some fun times, even with all of her severe mental health issues, but the teen years brought a different and more dangerous Annie, an Annie who was a danger to herself and to the others in the house. She went from rages to focused aggression, to sneaky plots to destroy the family with false allegations, with inviting her friends over to steal our computers, etc. when we weren't home, to threatening and attempting to severely injure her younger sister. She developed a revolving door association with our local psychiatric hospital and eventually it just got too dangerous for all of us to have her at home. So for the past 2 years she has been in this treatment program for folks with ABI, not sure how much good it has done her, but it sure has done the remnant a lot of good.

So here we are two years later, Annie is not significantly healthier, and she doesn't have a plan. Actually that is not true, we helped her devise a plan to get to a lower level of supervised living closer to our city and her friends. But, she has done nothing to achieve the plan. Nonetheless it is all our fault that she is still there and has not moved to a less restrictive setting. No amount of going over the plan, (no AWOL, no aggression, compliance with therapy), has helped her see that she has the responsibility to make the plan happen. Nope, I am the bad person, I am the one who put her into treatment and I am the one who is standing in the way of her getting to live a normal life. I wish I truly had that much power over her life, cause than maybe i could change things!

Oh well, at least she still wants to talk to us occasionally. But my new stance is that I will not mince my words. When she tries to throw the responsibility ball back into my court, I will smash it back into hers with no holds barred. She doesn't like to hear her past behaviors but when they are relevant to the arguments, threats, screaming fits she is having I will go there.

Tough times with Annie, an ongoing theme for about 5 years now.

Gallbladder Surgery

My DH left at 4:30 this AM to drive down to Illinois to see Annie before she has gallbladder surgery. This came up rather unexpectedly and he was able to clear his calendar more easily than I was. So he got the short straw.

Annie seems to be okay with it all, telling me about what the nurse described as her surgical procedure, etc. But we know Annie, she will fight the doctors and the nurses, inflicting self harm if the pain is at all intense. So DH went down to do what little he can to help. See Annie is 19 and considered an adult, we have been trying to get guardianship of her because with the FASD and the Acquired Brain Injury, and all the other alphabet soup after her name, she does not make safe choices for herself. But we have been hampered by the fact that the disability courts look at her IQ which somehow tests out at 89. That seems to mean that she is not disabled enough so we are having to gather all sorts of documentation from all sorts of professionals to make our case. In the meantime she is considered a functional adult. (yikes)

Just to give you an example of our concern. Annie is highly allergic to fish, we have known this since she was allergy tested at age 3. Well at 16 Annie decided that she was not allergic to fish, that the doctors were wrong and she knew better. So she had some fish at her friends' house. She started feeling ill almost immediately and came home where she promptly started to vomit multiple times. She was so agitated though that she was walking all over the house and must have projectile vomited in about 6 different rooms, all the time screaming at me, "my head hurts, I don't feel well" I of course did not know that she had eaten fish, so didn't know what was wrong. Then her face started to swell and her eyes started to swell shut, so I knew it was an allergic reaction and got her Epipen into her and called 911. She then started screaming at me, cursing me out the whole time, "I ate some fish, you stupid b***, I hate you".

She was wildly out of control, and despite our best efforts to calm her and put cooling cloths on her swollen eyes, she was rampaging. She gouged at her eyes, trying to make them stop hurting/itching, leaving huge open wounds on her face and eyelids. She began banging her head on the wall and door frame, hard. We called off the ambulance run as the Epipen had done its job, but I almost considered an ambulance run to the psych hospital.

Eventually the benadryl and the exertion slowed her down and she was able to settle for the night. But the wounds on her face and eyes were horrible, luckily they didn't get infected.

Now can you see my concerns for surgery. In a worst case scenario I envision her trying to rip out her stitches, IV, etc as she comes out of the anesthesia. I certainly hope that she won't but we don't have such a good track record to go on. So I will be thinking about my DH and Annie all day hoping for the best.

Shaken Baby, Aquired Brain Injury,

Annie is the middle child of my adopted sibling group. She struggles with Acquired Brain Injury, the result of her being shaken and beaten as an infant. Unlike some of the most severe cases of shaken baby much of her damage is invisible. She does have some vision loss and some quivering of her eyeballs but in the scheme of things she got off lightly, if you can say that about brain damage.



What Annie lives with is some frontal lobe impairment which impedes her judgement, her planning and some of the higher order thinking skills such as abstract reasoning. As she has gotten older these deficits have become more apparent and more of an impediment to living a full life. Her lack of judgement right now makes her quite a danger to herself, as she seeks stimulus and pleasure she is not making good decisions about keeping herself safe and is winding up placing herself in very dangerous situations.



To add to the mix Annie also struggles with severe Depression, ODD, ADD and RAD. For the last 17 months she has been in a rehabilitation center for folks with A(cquired) B(rain) I(njury). I blogged about some of my frustrations with her response to treatment. Since then she seems to have settled down a little, or we are just in a lull of negative behaviors. She is facing discharge soon from this program. We have to decide how we want to handle this. On the one hand she is turning 19 this month we could announce she is an adult and let her make her own way. Or we could seek guardianship and try to steer her to more treatment programs etc. The one thing we know for sure is that she is not welcome to come home right now. She is unwilling or unable to abide by the rules of the household and we are unwilling to have her with us unless she will. It is a standoff.


Today we went to a ABI treatment program to meet the Executive director and get some insights into what services they could provide. We were very pleasantly impressed. They have a relatively new program of long term residential services in group homes of 3 clients and 1 staff. Eventually Annie could be helped to move into an assisted living apartment. She would also be as integrated into the community as possible. The buildings were nice and open and airy. The staff all seemed friendly and very confident and outgoing. It has been the first bit of hope I have had on Annie's behalf in awhile.


Issues still to deal with, we would have to get guardianship of Annie, and we would have to figure out payer sources. She is still on the adoption subsidy which provides a medical card, but technically that expires on her 19th birthday. We would have to fight with Medicaid and the adoption subsidy people to see if we could get it extended until she turns 21 at which time she would eligible for the ABI waiver and that would cover her needs. I love this little hole in services that young adults fall into, where their child medical coverage ends at 18 and they are ineligible for the Medicare waiver programs until they are21. Exactly what they are supposed to do for 2-3 years is unclear.


So now we have to make a decision, how involved in Annie's life do we want to remain, because I have news for you any continued involvement on our part is not going to greeted with enthusiasm by Annie. Do we want to keep struggling with the black hole of Annie's needs or do we want to let her go and face the guilt of knowing she is incapable of taking care of herself. Either way we lose to some degree (at least our emotional health takes a hit), I guess the real question is which decision benefits Annie more? And from whose perspective?