Monday, October 24, 2011

Update on our daughter

I wanted to thank everyone for the prayers! The support and encouragement from our friends and especially our extended family has been deeply appreciated.

We hold our breath and cross our fingers and hope that things have returned to normal with Ohana. This weekend was surprisingly good. With a birthday party and relatives at our home, we were prepared for the worst. Even with a severe allergic reaction at 4:00 in the morning and not nearly enough sleep, we didn't see the meltdowns we were expecting. It is amazing how a few good days changes your perspective on everything.

We enacted some new procedures to increase structure around the home, and that has helped. We have also developed an effective sleeping strategy. Jenetta and I take turns each night sleeping next to Ohana on the guest room bed. She still has some anxiety at night, but it has lessened, and it is easy to get her calmed back down when we are next to her. Sometimes a gentle touch on her arm is all that is needed to get her relaxed and back to sleep. So it has been better from that perspective (although we look forward to the time we can return to normal sleeping patterns!)

Ohana seems to have a real disconnect between the choices she makes and the results from those choices. She has worked through a lot of her delays, but this is a lingering one for her. In many ways, she reacts more like a 3 or 4 year old and just doesn't understand the consequences of her behaviors. We are starting a new therapy session soon, and this will be a large focus of that time.

As Ohana has matured, it has been interesting for us to hear her talk more about what she is feeling and what she has gone through. Several times over the past few days she has told people her "life story." It goes something like this...

I used to live with (bio parent's names) but they couldn't take care of me. I then went to live with Grandpa and Grandma but they couldn't take care of me either. Then I lived in five other houses. They didn't want me, but they wanted to adopt my sister because she was still a baby. Then I came to live here with my mom and dad. They can take care of me so they adopted both of us.

The details and the placement order changes somewhat each time she tells it, but it always ends the same way.

That's what we are trying our best to do... take care of them. Thank you to everyone who has been taking care of us during these difficult weeks.

Monday, October 3, 2011

Long silence

I haven't posted here in a month because I haven't had much that I felt like sharing. To be honest, things are not going well at all. They haven't been for 4 weeks, and it started getting rocky a few weeks even before then. This is not to say that we haven't experienced some good things lately: a weekend visit from Grandpa Pat and Grandma Shelley, a brief afternoon with Judy and Kyle, and even a really fun 3 hours at Sea World this past Saturday, but for the most part, things at home have been very, very difficult.

Our oldest daughter is really struggling right now. She has not handled the transition to first grade very well and is an almost constant distraction in her class. We have already had meetings with her teacher, and although we are saddened by her behavior, we are so grateful that she is in an awesome school where the class size is still only 22 students, so at least we can try new things with the teacher to help Ohana think through her choices. This all starts at home where she is not sleeping well at night. Every night she wakes up 4-6 times in various states of consciousness. Sometimes she wakes up in a panic. Sometimes she wanders the house crying and upset but completely asleep. I have looked in on her and while asleep, she is waving her arms and legs wildly in bed. It is clear that she is experiencing a great deal of anxiety at night. Unfortunately, this carries over to the day and basically, if anything does not go her way (which unfortunately happens in life all the time), we are seeing the kind of temper tantrums we saw when she was four - throwing herself on the ground, screaming and banging walls, etc. Something as routine as "put away your shoes and your backpack" can turn into a huge meltdown.

This anxiety is causing her to be out of control at school and a distraction to other kids. It has brought up a lot of strange and sad behaviors both at school and at home. She is chewing her hair and pulling out clumps of it. We have had to take away the pink comforter on her bed because she tore it open and pulled out wads of stuffing. The only thing that seems to calm her down is lots of physical activity, so I've been taking her running again (sometimes in the middle of the night if necessary). Yesterday afternoon she wanted to run to grandma's house, so we ran almost two miles to her home (and got a car ride back). We are trying to take things one day at a time, but it is difficult not to envision her as a teenager out of control and making choices that have lifelong consequences or even to hurt herself.

We are both exhausted because we haven't slept well in weeks, and we are both feeling the effects of the constant stress of this. It is affecting Lynn as well. She has talked about how Ohana is making her sad, or how her crying hurts her ears, and Lynn has reverted back to having multiple accidents. We have had to move Lynn to the guest room at night so she can get enough rest at night. So we are all affected by this.

We've looked at medical reasons, dietary reasons and psychological reasons for this in our search to find help wherever we can. One of the things that is so heartbreaking is that in Ohana's more focused moments, she describes what is going on with her as "something wrong inside her brain." And she prays a lot that God would take away whatever is in her brain that makes her afraid or worried.

Things are hard for me at work. I find myself greatly saddened by all this and have been brought to tears by the pain and exhaustion of it all. Fortunately, I can close my office door and have privacy when moments like this come.

So we would appreciate your prayers in this as we take it one day at a time. We know that we do not have to worry about problems that may come up in the future - we only have to deal with what we are facing today.
Things are very hard for us right now.

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