Wrestling with an angel

I read an amazing book last night, God knew I needed it. I had breakfast with my friend Julie yesterday and she mentioned a book called "Wrestling with an Angel" by Greg Lucas. She talked about a part in the book where Greg and his wife had made the decision to place their son with disabilities in an out of home placement. I knew I wanted to read this book, and sooner rather than later.

I stopped at the library on the way home from breakfast. In the parking lot, I remembered that I had forgotten my purse (thanks for breakfast Julie!). So I went home. I looked the book up on the Hennepin County Library system and of course they didn't carry it because it is a Christian book. I found Greg Lucas's blog (which is now on my blog scrolls to the right) and found the book. I also realized that it was available as an E book and Michael has a Kindle which I have never used.

I purchased it right away. Wow, Kindles are really nice when you want to read a book right now. What I found strange, is that not holding the book in my hand or seeing it, I had no idea how long it truly was. I finished it last night, so it is not super long, but it was just right. The book was very powerful and was exactly what my heart needed. God's timing is good.

In this book, Greg's faith is powerful, and there were so many points he made that are things Michael and I have been saying for years. One point, was that in Akila, God reveals our own weaknesses daily. And through the challenges we have with her, it keeps bringing us back to the cross and our utter dependence on Him. It is a phenomenal book and one I highly recommend. You can get it through Amazon on the link to the right and top of my blog, or through the link on Greg's blog of course.

I also found a short five minute video about their experience. Their son is adopted, and had seizures as an infant. He has several diagnoses, but they are not totally sure what he has- Pervasive Developmental Disorder and Autism are the ones used the most. Thank you Jesus, for revealing this book to me at the right time. Your timing is perfect as always.

Here is the video:

Wrestling With An Angel from Brian Patton on Vimeo.

Walking in the sleet

Akila is on the edge this week, teetering on the brink of raging and violence. Tonight, she lost it and got a little too smack happy with me. I had to restrain her. Our PCA was here during the excitement, and was able to help.

Often, when a restraint ends, we end up in another one shortly thereafter. Sometimes, we are able to get her off track, off of whatever she is stuck on and led to the rage. Not often enough, but sometimes.

Tonight, I tried to distract her with the weather. We have had an odd winter in Minnesota, hardly any snow. In Minneapolis, we were suppose to get a huge snowstorm this week, but as each day went by, the forecasters lessened the predictions. It has actually been raining and sleeting tonight. Very strange.

I pointed out the sleet, she said a few nasty things to me. I randomly suggested we go for a walk in the sleet. She didn't like the idea. I said I was going to go for one and just put my coat on and left. She of course followed.

The sidewalks were a bit slippery from all of the sleet, so we walked down the block and I tried to get her to skate on the sidewalk. At first, she was acting yucky and like she didn't want to be there. But she warmed up. We also tipped our heads back to try and taste the sleet. She was convinced it tasted salty and was ocean water. I went along with her.

Then when we got home, and were totally soaking wet by the way (hoping the winter coats and boots dry by tomorrow- better get them in the dryer actually), I had her help me shovel off the sleet that was on our steps and our neighbors steps and put some salt down. I shoveled, she salted.

Some nights, I am too burnt out, tired, or lazy to think of something this great to distract her. I am thankful that the Lord was watching and gave me the necessary tools to ensure the entire night was not a disaster.

Library, safe choice, right?

You would think that taking Akila to the library would be a safe choice. Right? Well it isn't. And I don't mean because of the porn on the computers, or because of the people who are there. I mean because it has the potential to lead to rages. As does just about everything I guess. This morning, I was smacked because I put her spoon on the table instead of directly in the bowl of cereal. But I digress.

The PCA's have been taking her to the library a lot lately, and I think that is a great idea. Don't get me wrong (especially you awesome PCA's who might be reading this), I am OK with her going to the library. I do dread the books she comes home with sometimes though. Am I too critical? Possibly. I'm just so burnt out I guess.

She loves to get craft books. Great idea, right? No. The answer is no. For several reasons. One, I am not crafty at all and I hate doing crafts, but that is not the reason. I will stretch myself and do some crafty stuff with her, if it keeps her occupied and happy sometimes. The problem, is that you have to do it when she wants to and on her terms, or all heck breaks loose. Another problem, is that whatever is being made, has to look exactly like the picture in the book, or she goes totally nuts. Another problem, is that we usually don't have all of the materials listed that are needed. And you cannot substitute things easily with Akila, she is too black and white in her thinking, too concrete.

I have told her, that she can do the crafts with one of the PCA's. For example, a few weeks ago, she came home with several craft books. After the PCA left, she was looking at them, right before bedtime. She found a dollhouse she wanted to make out of tissue boxes. I told her she could do it the next night with the PCA. She flipped. She perseverated. It was not pretty. I said we would get it started as we did have some time to shoot (this is what I had initially said, and that she could finish it with the PCA).

We only had one empty tissue in the recycling. This was not good, the picture showed 3. I tried to substitute some other boxes, cereal boxes and things like that. Didn't work. Arm flapping, swearing, etc. It was not fun. It never is.

I did mention to the PCA that if it is possible to steer her away from the craft books, that would be great, but not to make a big deal out of it (rages in the library are not fun). Last night they went to the library after Akila refused to go to dance and threatened to kill the PCA.

She did not come home with craft books. She came home with sex books. Great improvement. Great. I am still laughing about it. I was telling my friend Julie about it this morning and we almost fell out of our chairs laughing. Again, this is not judgement on the PCA. If I had brought her, we would have come home with the sex books more than likely.

The books are books for kids and teens which teach about sex. We have several books like them. She was in the science area and was looking at books on the digestive system and things like that, when she saw these books. She of course gravitated to them.

We have had the sex talk with Akila, she knows how it works and all about it. Many kids her age are curious about sex, this is quite natural. I get this. But, it is different with Akila. Can't completely explain it, but with no impulse control, she has always been highly sexualized, and interested beyond the normal 12 year old in sex.

I didn't make a big deal out of the books. I looked them over, and they were just fine. She was looking at them at bedtime and this is fine. The main problem with them, is that this could start a "I'm obsessed with and stuck on sexual issues" phase for Akila. She always goes through phases. She will barely steal at all for a month, and then go on a stealing bender for two weeks. She won't be interested at all in sex, and then will try to get onto po@rno*graphy on the computer several times in a week when she hasn't tried to for months.

So, I am hoping we are not entering another phase here. I just don't have the energy.

The ups and downs

Wow, the ups and downs of what we are feeling on a daily basis, are daunting. I am just so thankful that the Lord has my back. Every time we start to feel stressed or weird about the fact that we are trying to find a more safe place for Akila to live, outside of our home, He sends us a reminder.

Somebody texted me this morning asking how Akila was doing. I said she was up and down. They then texted asking if she was better. Well, I just sat and looked at my phone and didn't know how to respond. Better is all relative when it comes to Akila. I finally responded texting that she has good days and bad days, and her bad days are extremely bad. So, she is having ups and downs. They responded, "OK." Not sure if they got the message or not.

As I wrote yesterday, we have been getting by, but not in a way that a person would want to live. Today, a PCA picked her up from school to bring her to dance. She basically refused to go to dance, and was threatening to kill the PCA and being very verbally abusive. They ended up going to the library. I spoke with her on the phone before the library, and I could tell she was not in a good place, mood wise. They were at the library a long time and she was fine there.

When they got home, the ugly mood came out again. It is amazing how much we keep needing reminders of why we are doing what we are doing. It boils down to the fact that we desperately want to keep her home, but have tried everything and know we can't hold on much longer. We know it is in the best interest of all 6 of us, but it is just so un-natural. So incredibly un-natural to not have your child living with you.

Getting by

We are in the phase of trying to "get by". Not a phase I ever thought I would be satisfied with. I don't like to get by, I like to be organized and go all out- getting by is not part of my personality. Well, I lie. When it comes to cleaning, I just get by.

The last three weeks, we have been trying to be very pro-active in avoiding rages with Akila. We always do this, but have been going all out lately, and living like a family can't really live normally. We have had PCA's scheduled each day after school until bedtime, and Akila has been gone the last two weekends. Last weekend, she was with a respite provider. This weekend, my awesome sister-in-law and bro-in-law, Dan and Tara, requested to spend the weekend with Akila. I obliged of course.

They had a nice weekend with her, and we got her back this morning at church. Shortly, a PCA is arriving to help us make it through the night, and she is bringing her dog- bonus! In the less than one hour since we got home, before the PCA arrives, Akila was starting to perseverate on wanting something new, a new DSI game or something like that. Michael was able to distract her with a computer game on his new laptop, so she did not escalate. She would have escalated guaranteed if we didn't have something new for her to do.

The PCA is here with her now, and Akila has just been playing the computer game so far. She is in a good mood, and I am hoping that will stay for the entire night. What has been hard, is that if there is any down time in our home, even if we structure it and say, from this time to this time we will do crafts, from this time to this time we will play on the Wii, from this time to this time we will do chores, etc., we are ensured to have explosions.

We have been walking on egg shells with her, and trying our hardest to bypass as many rages as possible. We have had several of them each week, but not as many as a few weeks ago. This is partially due to the fact that she is on one of her decent streaks right now, and the fact that we have kept her very busy. Bedtime has not been fun. We will give her the meds, she will get very tired after 30 minutes, and needs to go to bed. But most nights, she is refusing to go to bed, and if we get hardcore with her, we are guaranteed a rage which means at minimum one more hour before she gets to bed. She is not intentionally being manipulative so she can stay up later, but it does seem manipulative.

One night, she was coloring a picture before bedtime. It was taking forever. I told her she could finish it the next day, and she went off on me. Nothing I was suggesting or saying, would get her off the idea of finishing this picture. And it took her FOREVER to finish. Again, she was not coloring slowly to prolong bedtime, it just took awhile. I tried several things to get her to put it away and finish it the next day. Nothing worked. I made a choice to avoid the rage, and I let her finish it. It was after 10 when she went to bed, which is very late in our house (not for me, but late for the kids- and Michael!).

Sometimes it feels like we have made too many concessions. When dealing with a difficult child, it is hard often to discern what things you should stick to and which things you should concede on. We have not given up on Akila, we still love her dearly and want what is best for her. Unfortunately, we know that living her is no longer the best for her, or for the rest of us. She needs her family to advocate for her, love her, and have a good relationship with her. Right now, our relationship is struggling. When she was in the crisis home this fall, we were able to enjoy her much more, and had mostly positive interactions with her. We need this. She needs this. She needs the people who love her most in this world, to not be constantly yelling, restraining, arguing, de-escalating, etc. She needs to have fun with us, she needs to hear loving things from us, she needs to enjoy us. We do say loving things to her daily, but it is sandwiched between restraints and name calling (her calling us names that is).

We are getting by day by day. Praying for a better situation, where we are better able to enjoy our daughter, and give her the full support and love that she deserves from us all.

Waiting

When we started the adoption process over 13 years ago, one of the hardest parts was the wait. I am not a patient person. When I sent in the pre-application with the $50 fee, I waited anxiously for the next step. I felt that the next batch of paperwork should arrive within a week. Never works that way. Then we got the next batch of paperwork, which was huge, and I finished my part up right away. Husband, not so much. So, I waited. And waited. And tried not to nag. Tried being the key word.

Finally sent in that batch, and waited some more. Waited for the meeting with the social worker for the home study. Waited. Finally got through the home study. Had it sent out to several different agencies. Waited some more. It was a huge test to put my faith in the Lord and in His timing. When adopting Akila, who is our first child, we had several scenarios fall through, which made the waiting even more difficult, and even painful at times.

Then when we got the "call" about Akila, and said yes after some info exchange, the wait was the most challenging. When you know who your child is, it seems like you should be able to go and get them right now. Why wait? Waiting is dumb. :) Drove me nuts to wait once we had committed. Throughout the entire process, even before we were matched with Akila, we would sometimes come up with little excuses to call the agencies to get an update, or see if there was any movement. I'm sure they knew this, but I really didn't want to be "that parent", who was calling and harassing them all the time. I spaced my calls out, and always came up with a dumb reason for the call. It is part of the game.

I took exactly 9 months from the day I sent in the pre-application, to the day we got Akila. Not bad, I know international adoptions take years, as do many domestic adoptions. But like I said, I am not a patient person. I do not like to wait, especially when I am really excited about something. And I have never been good at understanding systems and why they are run so ineffectively so that things take too long. I have a friend who along with her husband, has been trying to adopt through foster care in Hennepin County. It took the county FOREVER to finish their homestudy, and even longer to match them with two children. Close to two years I think. Drove me nuts!!!!!!

I can't even get into the emotions of the kids who are waiting, the waiting children list is lengthy. I have no idea of what their wait is like, the emotions they go through. That is for another post.

I also want to write about the irony of the waiting period we are in right now, it is such contrast to the waiting period we started 13 years ago. Now, we are waiting, anxiously I may add, for the county to find an out of home placement for the daughter we love with all of our heart and waited so long to bring into our family. We are not waiting now with anticipation or excitement, but with anxiety, fear, grief and sadness. We are waiting for relief, we are waiting for sanity, we are waiting for safety- both emotionally and physically. Now, I am sitting each day trying to think of an excuse to call our county social worker, to see where they are at with placement.

It is not something I would have ever guessed we would be waiting for 13 years ago. For the umpteenth time, I must reiterate, that Akila is my daughter, I love her and I am glad she is my daughter. I was meant to be her mother and I know this with all my heart. Does this mean that I don't ever wish she did not have FASD? No way, I wish that daily. I pray for healing for her. But I am going to love her where she is at right now, and that is at a place of instability and pain.

Here are the two possibilities that are being looked into for out of home placement at this time; a Residential Treatment Center (RTC) in Wisconsin which is 4 hours away from Minneapolis. Not too excited about that. It is a band-aid approach, and too far away. There are no group home openings in the metro, from what I am being told. So I have asked if they would look in my hometown of Willmar and they are. I have friends who I know would help connect with Akila as well as let me stay there for visits. It is only 2 hours away. If a non-metro option is what we need to go with, Willmar is my first choice. If you are a praying person, please join me in praying for that option.

So once again, I am being put to the test. Is it my timing, or God's timing? I know the right thing, and that is to be patient and wait for Him to reveal the next steps to me. So I wait. I pray.

Smacking the respite provider

I went to pick Akila up from respite at 3:30 yesterday. When I came up to the door, the foster daughter of the respite provider (who is about 15 I think), opened the door and told me they were having an episode. I came into the living room and the provider was holding Akila's wrists and Akila was fighting and raging with her.

Akila was hurdling all kinds of abuse charges and things like that. I felt so bad for the lady, as this is what she does to us constantly, and it is nerve wracking for us. Can't imagine how nervous that might make her, in case she thinks I really think she was abusing Akila. She was saying to Akila, "Did I hit you? Did I touch you? No, I only held your wrists so you wouldn't hit me again." I assured her that I knew that. I took Akila's wrists and she hugged me and started sobbing.

They had many ups and downs over the weekend, which is totally normal for Akila. But at the end, when getting ready for me, the provider asked Akila to pick up her brush and put it in her bag and this set Akila off. I told her it is usually something as small as that. Tried to get her to understand again that she is seeing a mild version of Akila. I am so grateful to this woman for being willing to work with my daughter. Amazingly, she is willing to still work with her. God is good.

We drove to dance after this, and Akila was totally silent. I did not say much to her. Wanted to let her continue to settle down as I know by her behavior at respite, and her behavior the few days leading up to respite, that she is not in a good place right now.

I dropped her at dance and our awesome PCA picked her up. Akila must have earned $1 at respite (ugh- hate it when she has $), so I had told the PCA they could spend it after dance at dollar store or somewhere if they wanted. They went to 3 stores, and Akila did not spend it. She wanted to keep looking, but it was getting very late so they came home. Akila called the PCA names and gave her some attitude, which is the first time. She is starting to get comfortable with both the PCA and the respite provider. It use to take her so much longer.

At home, I could tell she was just on the edge and we could have easily gone into rage mode. Thankfully, we were able to avoid it as the PCA and I just both gave her some space and time to get into bed. I have not been very pushy with bedtime lately, as it is not worth the rages it causes.

It seems like every two weeks we are in a new place with Akila. A month ago, she was raging and being physically aggressive in front of our in-home therapist. She never would have hit our hurt us in front of others in the past. Six weeks ago, she was calling the OT a stupid woman and other names. In the past, she would have never done this to a medical professional, let alone most adults who she was not extremely comfie with. Now, after two times with a respite provider, she is hitting and kicking her. Not to mention calling her all kinds of names, including racial slurs.

This respite provider is an African American woman, and Akila called her the N word. Talk about uncomfortable. When I met with this lady, I told her this could happen. I told her she calls everyone the N word, including white people. It isn't that she doesn't understand the word necessarily, it is that when she is in a rage, she will use any word she knows is loaded and might anger or hurt people. I know that this could look to some people who don't understand FASD, that it is a racial identity issue. It is just impossible to explain to people though. It is a brain damage issue, not a racial identity issue.

Bottom line; I am sad that she was physically aggressive with the respite provider. But it was another gentle reminder of why we are moving in the direction that we are.

Respite for the long weekend

Akila went to respite on Friday evening until Monday afternoon. There is no school on Monday so we can celebrate our presidents (yeah, right). She called me on Friday night wanting me to bring her a doll head that you style hair on. I was out to dinner with some friends and said I couldn't.

This respite provider is about 20 or 25 minutes away. I do not want to set a precedent of running up to her whatever she decides she wants. If it was something important, like her hair scarf, or teddy bear, I would make it happen. But not for a doll. She has called each day wanting the doll. The respite provider texted yesterday and today that Akila was having some rough times but it was working.

She is getting comfortable and showing her stuff. I told the provider that she is seeing a very mild version of Akila, as she was calling me and telling me how Akila had been rude and disrespectful. The call with Akila was reminiscent of when she was in the crisis home, and would call us to complain about something. You can't even understand her, as she gets mumbling/bellowing.

Bottom line, I am very grateful for the respite. Right now, we are in a stage, not a fun stage, but a stage where we are trying to get by each day without extreme violence. The respite weekend helps with this goal.

The meeting

The meeting with our placement worker went well. It was mainly a meet and greet. Akila would not come fully into the living room. She stood in the doorway. The worker did a nice job of getting her to warm up a little, she was not angry, but would not come into the room.

While he was talking briefly about the process, or where he has sent her info to check into places that might be able to take her, she would just shake her head no. When asked about what she was feeling, she would say she was going to do better.

There is a place with an opening and he is sending our stuff to see if it is a good fit, from what I have heard about this place, I think they will accept her. It could possibly happen next week, but I don't want to get my hopes up too much, or down too much. It is still a horrible feeling. Especially as it is a 4 hour drive.

It is amazing to me that the there is not a good place in the Twin Cities metro area with the high amount of challenging kids here- or one within a two hour range. There are for sure other places, but they might not accept the physical aggression, or have an opening. But this is the main place that everyone thinks is the best fit for her, regardless of where the are openings.

Makes me sad, 4 hours. That will make it harder to visit her as often as I would like, especially with a 1997 and 1999 vehicle with lots of miles on them and visits to the mechanic every 3 months with issues.

After the worker left, Akila was looking through some craft books she had gotten from the library. Shortly into the books, she wanted me to look in the basement for a specific tank top that was featured in one of the books. We don't have a shirt like it showed. But she was convinced I could find one if I looked in the basement. Sometimes, when she is like this, I go down there to pretend to look for something I know I don't have, just to appease her. I did this, and did not have the shirt.

This made her mad, very mad. I gave her several options, extremely similar to the shirt she had in her head. The exact same shirt actually, except the on we have has ribbing in it. She didn't like this. So she got physical.

While she was in the living room hitting and kicking me, Imani came in (to intentionally distract her), and asked if she would play Just Dance on the Wii with her. Akila said yes, but not yet (I will finish the sentence she didn't finish here; "yes, but not until I am done beating on mommy"). Imani said OK and went back to the kitchen while Akila continued to fume and hit. At one point, Zeke asked me to come into the kitchen and he said, "how come it is taking them so long to find someone to take her?" I said that it takes awhile for them to find just the right place.

Imani came in 2 more times and Akila finally went with her. My kids are amazing. Shortly after that, the in-home therapist arrived and Michael and I left to go pick up a vehicle from the garage. The rest of the evening went fairly well. Akila is going to respite this evening, and I am very thankful for that, especially with the long weekend.

A gentle reminder

For the past two weeks, Akila has been on a decent streak. Instead of being violent every day, all day, she has had about 2-3 days a week where she has been violent, and it has not been as intense and extreme. She will hit, kick and attack, and it will be over within 30 minutes (well, kind of). Of course, this starts to play with your head and heart as a parent as we received word last week from the county that they are working on out of home placement. Makes you question your request.

Then you have a night like last night, and the Lord slaps you up side the head with reality.

The PCA dropped her off around 8:30 and Akila was focused on an injury she thinks she had. She thinks she pulled a muscle or something on the top of her foot. It probably is a bit sore, but you cannot visibly see anything. But being the smart experience mom that I am (ha), I said I could see a difference between the "injured" foot and the other. If I had said it looked fine, we would have had instant anger. But she was convinced she needs to go to the Dr. I told her it is not a Dr. kind of injury, and one that we need to ice and wrap (she loves to put ace bandages on and pretend she has an injury).

This was not good enough. She was starting to elevate. I told her I would call our Dr. the next day and explain the injury and see what she said. Akila got very mad, as she thought we needed to go to the ER. Keep in mind, she is walking normal, and there is no sign of a problem. She also did not remember doing anything to it, which could have resulted in an injury. I was sitting in a chair and she was on the floor beside me showing me the injury. She started to punch my fatty thigh, I have plenty of extra padding for just such an occasion.

She was getting quite upset, and I could not talk her down. A trip to the ER is the only de-escalation thing that would have worked a this point, trust me. I left the room, she followed attacking me as I went. I went upstairs to the bathroom and took my sweet time. When I came out, she was outside the bathroom door waiting for me. Michael had been trying to distract her, but it was not working. I went into my bedroom, and she started in a full out attack/rage.

I ended up having to restrain her finally. And wow, I can't explain how strong this little thing is. Michael helped me, and we had to restrain her for quite awhile. Her mouth was more violent than ever, and she swore more than she did the entire month of HORRID January. She kept calling Michael a slut, which was making me want to laugh out loud, but I restrained myself- maybe because I was stinging from a bite to the knee, wow, that one hurt.

During this long restraint, I was praying, and thanking the Lord for the reminder. We are meeting our Placement Worker this afternoon, and I was feeling funny about it. Even though I know more than anyone how Akila works. She will go for weeks with the bad behavior, and have a good week or two, followed by a string of ugliness. I know this, but it is hard to explain to others.

Akila had an appt with the Psychiatrist yesterday. She was asking how things are going, and it was hard to answer. She has had two good weeks, but that means nothing from a medication stand point. The Dr. did seem to understand this, for which I was thankful.

The week that Akila was going to a crisis home at the end of last summer, Michael and I were an emotional mess. I remember vividly the morning she was going (and she did not know yet), her being very violent and Michael and I restraining her in the kitchen. We were both looking at each other and thinking, "really, really???". It was a reminder from the Lord why we were doing what we were doing, for although we knew it was right, it felt horrible.

Last night was a gentle reminder from the One who knows again. Well, maybe not so gentle, but He got the point across.