What’s going on with Kaki

I wanted to explain, all on one place instead of a million updates on Facebook, what is going on with our daughter Kaki. To understand where we find ourselves, I have to go back to the beginning because I find as I talk about our recent issues they come as a surprise to some, so I wanted to give some history. In November of 2013, we adopted Kaki from Hong Kong at age 11. She had been living in an institutional setting most of her life. It was a residential school for kids with disabilities and it was one of the better places out there I think. When we visited they really seemed to care about the students and she was well cared for. She liked living there because it was all she had ever known. She has severe intellectual disability, meaning her IQ is less than 20, when a normal IQ is around 90. She is unique because most people with Intellectual Disability have IQs around 70, so hers is much less. She functions at about 1 year old level or less in some ways. She also has epilepsy. Most people ask me if we knew what she was like before we adopted her, and yes we did as much as you can tell from written reports. We hoped, probably naively, that we could change her and she would make gains by living in a family and getting good medical care. We had high hopes for the things she could achieve. We knew she would always be disabled but we hoped she would improve. There were reports of her hitting others at times when she was frustrated but we assumed that was from a lack of parenting and we could improve that. When Glenn met her the very first day he realized she was more combative and challenging then we thought. Of course, we thought we could just push through and things would improve in time. And how could we just walk away?

When she came home things were okay for a while. She came home on one medication they said was used for her epilepsy, it was Lorazapam. It’s a strong sedative that is not used on children in the US except in emergencies and certainly not daily, as she was taking it and had been for years. Her doctor’s immediately took her off that medication to then try to replace it with an appropriate seizure medication. It was then that her negative behavior started. What we didn’t realize was we had been experiencing what’s known as the honeymoon period for the first couple of months she was home. Older adopted children often are well behaved initially and then show their true colors as time goes on. She began to hit me and compete for Glenn’s attention. He was initially not aware of her behavior, it was subtle, but I saw it of course. That is often the case with kids with Reactive Attachment Disorder, as we later discovered she had. We sought out attachment counseling for her and I, and the therapist told us about RAD and it saved our marriage. She was trying to pit us against each other and doing a pretty good job at first. Once Glenn realized what was going on he made sure to not fall into it. When she would come and literally sit between us or try to hold his hand and pull him away from me he didn’t allow it. We tried counseling for months but were not successful due to her very low IQ and understanding of herself and the world.

That summer things got really bad. We realized she needed some type of antidepressant or something so we tried one but it made things worse. After school let out she began to refuse to eat and would get angry and rage against us, specifically me and the boys. When Glenn was at work on a couple occasions I had to tell Sam, who was then 10 years old, to take his three younger brothers and lock themselves in their bedroom and not come out no matter what. I would then hide from her so she could not hurt me and try to watch to make sure she was safe. I would then call Glenn to come home so he could try to calm her down usually by physically restraining her. I couldn’t be with 5 feet of her without her attacking me which made physical care very difficult as she requires full physical care. I was also pregnant during all this, expecting our son Luke. She kicked my stomach and bit me on multiple occasions, but God had his hand on Luke. That fall we were at our wits end. Finally her doctor put her on a anitpsychotic medication called Risperidone and it was a game changer for her. Overnight she began eating and slowly we made progress in her behavior. By the time Luke was born in November, she was doing well. We thought we had dodged a bullet and things would be fine.

Fast forward to about a year ago. She was having some physical issues due to being on Riserpidone for so many years and so they decided we should take her off to see how things would go. Immediately we knew that wasn’t going to work so we put her back on the medication, but for some reason it no longer worked. Since last fall we have tried multiple medications and have been working with a psychiatrist to get her under control. This summer things really went down hill and we had to go the psychiatric ER for the first time because she was self harming, refusing to eat and attacking me and her brothers again. This time we knew more. We knew how to get help. Back in 2014 we didn’t knew what to do, so we didn’t talk about it. Even our close friends and family didn’t know who bad things were. On September 11 things came to a head. I took her to her psychiatrist office and he told me there was nothing else he could do. She needed to live somewhere else, like a home with only her and a caregiver who was trained to handle her needs. She couldn’t handle the family setting of our house. She needed more than what we could provide. I knew this, we have known for years but we hoped we could just get by until she was an adult. Kids with RAD are triggered by family settings, specifically mothers. We are known as the nurturing enemy. We represent pain and loss and she cannot get past that. She craves attention that we cannot provide. We had tried to find a place we could afford for her to be but her insurance didn’t pay for such things and we couldn’t afford to pay out of pocket. A couple of days before this I was praying about the situation and God told me to email this one social worker. She worked for Cardinal innovations which is who manages Medicaid for disabled children. We cannot qualify for Medicaid on our own so we were applying for special funds. The waiting list is 10 years long, literally. I sent an email and the social worker called me that same day and said we could apply for emergency funding but we were unlikely to get it because they only give it out to the most serious cases and only have a few spots each year. I made the application anyway.

So, on September 11, Kaki’s psychiatrist suggested I called Child Protective Services to see if I could voluntarily give her up to them to be put in Foster Care and get the help she needs. I wept in his office knowing that was my only option at that point. I took Kaki to school and went to my moms grave. I needed to talk with her. I know she isn’t there but I went to be near her and to talk to God. I yelled and cried and begged God for another way. The next day we took Kaki to the ER and they admitted her to the psychiatric ward at CMC. I hoped maybe they could do something with her medication or something. At that point she was refusing to walk, or eat and was very violent at home. They kept her for 12 days to adjusted some medications. That made her more physically capable but they did nothing for her behavior. They discharged her and she came home September 24. Things were worse than before. Her psychiatrist then recommended another hospital called Behavioral Health. Things got worse over the weekend and on Saturday we took her there to the ER. They said they could help and would admit her, but ultimately they made some quick medication changes and discharged her Tuesday, saying there was nothing else they could do.

In a huge answer to prayer we found out we got the emergency funding I applied for back in September. So, in a month or two she will be able to transition to a residential setting that she needs. I know that will come as a shock to some and some will not understand, which is why I am explaining all this. For now we will endure things as they are until she gets placed. Every day is hard. We are heartbroken and this is not at all what we had in mind. God is assuring me He has a plan, we just have to trust. He will bring healing to her, it’s just not going to be as we planned it. This is by far the hardest thing we have ever experienced. We wish it could be any other way, but we know that it’s what’s best for her and our other children. We wanted everyone to really understand what’s going on and how we got here. As we transition her over the next month or so, please pray for us. It’s heartbreaking and we are grieving and yet there will also be feelings of relief  when we have peace again in our house. Pray for peace in our house and our hearts and most of all for her as we go through this difficult process.

5 thoughts on “What’s going on with Kaki

  1. Once again you have shared from the depths of your hearts. We love you and will do all we can to make these next weeks and months ahead be a little easier for everyone. Love, Mom

    On Thu, Oct 3, 2019 at 3:33 PM Armloads of Blessings wrote:

    > armloadsofblessings posted: “I wanted to explain, all on one place instead > of a million updates on Facebook, what is going on with our daughter Kaki. > To understand where we find ourselves, I have to go back to the beginning > because I find as I talk about our recent issues they come a” >

  2. Hi Ruth – Mary sent me this because she knows we have been through so many of these situations when Tommy was younger: the aggression, the hospitalizations, residential. We have come so far but the pain of it all will never disappear. It was torturous for me as his mother. I will be praying for you all. You’re doing the right thing.

  3. Hi Ruth – Mary sent me this to read because she knows we have been through so many similar events and feelings. It pains me to read this because I know how much pain you and Glenn must be in. For many years, Tommy had aggression. He was hospitalized at both places you mentioned and all they did was change his meds. I have sat alone in ERs countless times because of his aggression. My husband spent a lot of time in NY on business back then and I had to deal with Tommy by myself. It was emotionally draining and heartbreaking. Finally in April 2014 we had no other choice but to put him in residential. He was there for a year. I thought I’d never survive but somehow I did. He has gotten much better now – the aggression is gone and he has come a long way but as long as I live I will remember that pain. He and Kaki’s situations are very different but I’m sure many of the feelings are the same. As far as people not understanding, to this day there are family members who don’t understand what we went through and the limitations we all have today. I’m going to be nice and say….OH WELL. Unless you live in this type of situation, you will NEVER get it. Not fully. I know I have PTSD from it all. Even though it’s been years since things were so bad, I still cannot relax fully. I’m always waiting for the other shoe to drop. I will be praying for you guys. You’ll make it through. God will bless your efforts. You are doing the only thing you can do. The one thing I didn’t have was other young children. The only one who got hurt was me and my house. If I had had other children, the situation would not have gone on as long as it did. Thinking of you all….😘😘

  4. I just wanted to add that this type of situation is unbelievably hard on marriages. Tommy played one against the other a lot and many times we didn’t react the way we should have as adults. The situation was so frustrating.

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