Wednesday, February 29, 2012

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.

Tuesday, February 28, 2012

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.

Monday, February 27, 2012

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.

Sunday, February 26, 2012

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.

Thursday, February 23, 2012


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.

Tuesday, February 21, 2012

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.

Sunday, February 19, 2012

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.

Friday, February 17, 2012

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.

Thursday, February 16, 2012

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.

Tuesday, February 14, 2012

The world according to Akila

I often forget how narcissistic Akila is. I have no idea how I forget that, but when you live with someone, you just get use to these things. Whenever we are around my friend Julie, her narcissism shines through and I am reminded of the "world according to Akila".

When we visited Julie's son Elijah in the hospital last summer/fall when he was having his bone marrow transplant, it was all about Akila instead of Elijah. She made Elijah a card, and it had the name AKILA giant in the middle. Elijah is sitting in the hospital bed playing his Ipad and Akila is obsessed with playing it, not understanding that it is not about her.

We went to Julie's house this past weekend, and once again, it was all about Akila. I couldn't get her to play with Julie's little daughter, as Akila had a different plan. She made me a valentine card, which reads like this, "Dear mom, I love you, from my love to the world".

She went to the library yesterday with her PCA and got 11 books. She loves to get books at the library for the other kids, and this is very nice of her, and un-narcissistic. Last night she got a book for all of them which is on the state they were born in. Cool. Then, the entire night she was obsessed with her Georgia book and was reading the facts. She gets really excited at all the things, because they are all about her (in her mind). She was still awake at 10:30, because she was focused on the book.

When she wants other kids to play with her, it is her way or the highway. You have to play dolls, and that is it. Rarely will she let the other kids choose an activity, even if I talk with her about sharing, and letting the other kids choose the activity sometimes. She just isn't capable most of the time to do this. Which often results in a rage.

These are just a few examples of the world according to Akila. Hoping and praying she outgrows it someday.

Monday, February 13, 2012

Random pictures

We have had a mild winter in Minnesota, and I'm just fine with that. Yesterday, Akila took her dolls for a stroll outside and wanted me to take some pics of her. We missed church as Michael is sick, 3 kids have sore throats, and I woke up with a headache. Akila had a rough morning, but was able to pull through and played pretty well throughout the day. We had a PCA from 2-6 which was a new treat we have never had on a Sunday.

She also has been playing a ton with Barbie Dolls lately. For some goofy (and very annoying) reason, she wants to play with them in the hallway. This has caused many issues as if the kids want to get to their rooms for anything and knock anything over or step on something, they are in for it. I have been trying to tell the kids to find me and tell me what they need and I will go get it for them and deal with her wrath. The truth is, she has been playing quietly with them a lot the last several days, and I can deal with the mess and helping her clean it up each night.

These are some coupons (or cupons) I got from Imani for Christmas I forgot to share. I especially like the bottom one and am saving that one.

Hezekiah working on his Grand Prix car for Awana's.
Akila on the walk with her baby.

Notice the no snow. I think that the Lord is making up for last year when we got snow dumped on us daily and had huge issues with our roof. I am grateful for the lack of snow, even though my kids are missing it.

Amazing 9 year old

I have known a lot of kids in my life. I have awesome nephews and nieces, and have babysat a lot of friends kids regularly before we had our own children, but I have never known a kid like Zeke. I'm not saying he is more awesome than any other kid (well all 4 of my kids are more awesome than yours- haha), but he is very unique.

I have blogged about this before, but I have to again. He is so organized and responsible most of the time, and it is kind of freaky. I can't imagine how he is going to be as he matures- his organization at the age of 9 is seriously better than mine. Every night before he goes to bed, he lays out everything next to his bed. I don't mean just his clothes, I mean his boots, backpack, hat, mittens, etc. He makes a to do list each night before he goes to bed. It is weird. When he comes downstairs in the morning, he already is wearing his hat, coat, etc., and he has at least 1/2 hour before the bus leaves.

He has been loving to cook for us sometimes, and I am totally fine with that since I HATE to cook. On Friday morning, he told me he wanted to cook dinner that night. I told him he could on Sunday as I had already thawed some meat and had a meal planned (which is very rare), we had plans on Saturday night, so Sunday would be perfect. Plus, I don't like to cook on Sunday evenings. He was upset and wanted to do it on Friday, but I won cuz I'm the mom.

On Saturday, he started his prep work. He put everything that was non-refrigerated in a laundry basket. He even dug up a table cloth, vase with flowers, candles (he always has to do a candle lit dinner when he cooks or helps me cook), it is adorable.

He made his list of food. He made bagel dogs (hot dogs with crescent rolls on them, he does bite size ones), a rice dish with vegetables, black beans and soy sauce, he makes fried potatoes, and craze bars (which are granola bars dipped in melted chocolate chips).
He set the table on his own and used water goblets since it was such a fancy meal.
I didn't get a picture of the craze bars but there is a funny story behind them. He started making them last spring, and of course Michael and I raved about how good they are. He named them craze bars and makes them all the time. He was talking about how it is a secret recipe and how he is going to sell them someday and make a lot of money. I did not have the heart to tell him that there are already chocolate dipped granola bars. Then last month, he was grocery shopping with me and saw a box. He was crushed. He wanted to buy a box so I did and he was bummed as he thought the store ones were better than his. I of course disagreed. Thankfully he still makes them.

It was a great meal and one of our PCA's stayed and enjoyed the meal with us. The kid is just adorable. He said he is going to start working on developing some new recipes. I'm just fine with that idea.

Sunday, February 12, 2012

Lunar effect???

I was reading about the lunar effect and if it messes with kids behaviors- that is how desperate I am to figure out what is up with Akila's behavior. I have written dozens of times over the last many years how she has cyclical behavior patterns. She will have two bad weeks, followed by one or maybe two good weeks. She will have three bad weeks, followed by four good days. She will have two HORRID weeks, followed by 1 bad week, followed by two good weeks. I have charted her behaviors, looked at factors that might effect her behaviors, foods, hormones, things at school, transitions, etc. She makes no sense. It is maddening.

For her, it doesn't phase here when her para or teacher are gone for a day. Or if they mess with the schedule at school due to testing or something else. You would think it would, it does for the majority of kids with organic brain damage (whether from prenatal alcohol exposure, trauma and neglect, attachment issues or what have you). She does actually really well with transitions, especially at school.

Can't remember if I have written this before, but she is having one of her best school years exactly due to all the transitions in her day. Most kids with FASD really struggle when they hit middle school and have to switch to a different teacher and class every hour or so. Not Akila, this is the perfect set up for her. Why? Because she does not get super comfortable with one teacher and one group of kids. Typically each year, November is when she starts to struggle more and has a hard time, after she has the teacher figured out and she settles into her schedule. Well now, she is changing every hour, and her behavior has not been as rough as in the past. Although at home it is the worst ever. Sigh.

But I can't figure out the reasons for her good days and bad days, or I mean good weeks and bad weeks. She snapped on Dec. 29th, after nearly two decent weeks before that. Again, I like to remind you, that her decent/good days or weeks, would horrify the majority of parents in our world. They are not easy days or weeks, but they are tolerable. She had 35 EXTREMELY HORRID days in a row. Never before have we had that many HORRID days in a row, they were so bad they are now classified as EXTREMELY HORRID. We have been very close to that with bad days, but not HORRID, or EXTREMELY HORRID.

Then she got sick on Wednesday, Feb. 1st, and has been tolerable for the most part since. Some ask if it is due to her hormones. I don't think so. She has been like this since way before pre-puberty or puberty time. It is not food related, have tried that. I thought about the lunar effect, but her behavior has been good during this full moon, maybe that is it, she is better behaved on full moon days.

All I know, is that I am thankful that last week, there were only two days that she hit and kicked and pinched and punched and bit me. Unfortunately, this morning the decent streak of one week seems to be over. But I am thankful for the brief reprieve.

Friday, February 10, 2012

Things not to say

Those of us who are parenting children with brain damage, have a tough job. I admit it. It is hard, every day, every minute. There are things that make it easier, or more bearable I should say. Number one for me is my faith in the Lord and knowledge in His purpose in my life. That is the most important thing, that helps me keep my head above water.

There are several other things that help me not commit myself to the loony bin. A great husband who has my back. Hanging out with other moms who are living similar lives. Hanging out with friends of typical kids so I can pretend to be normal once in awhile. My blog friends and on-line supporters. Exercising, which I need to start doing again regularly. The occasional chocolate binge (too occasional). Random people who offer to help from time to time (a friend who has taken Akila for several hours on a Saturday, a friend who took her for an overnight, a friend who sent their housecleaner to my house once, etc.). I am so appreciative of all the support we receive. We would be emotionally wrecked without the support.


There are also the people, who are almost all well intended, who say things that are just not helpful. There is often a lot of blame behind their words, even if they did not intend it to come off this way. What people need to know, is that most of us parenting challenging kids, have tried everything. There are very few things that actually work with a child with FASD, and that is the honest truth. I don't want to scare people off, but I want you to think about the things that you say to a parent like me before you say it.

Here is an example of some of the things that can be really frustrating:
  • After telling someone about Akila's physical aggression, and going quite in depth about it and all that we have tried, I received an email asking me if I remind her that hitting and kicking will result in a loss of privileges. Really? Really???
  • After telling someone about some behavior or something that Akila did, they tell me that it is normal and that their child did that once also. Really? Really? Big difference.
  • After telling someone that Akila has very ashy skin and refuses to put lotion on and I am kind of over battling with her, they suggest that I get her a nice smelling lotion or lotion with glitters. Yeah, cuz I have never thought of that or tried that. Not to mention, it is not about the lotion, or being unique with the lotion. She is going to fight it no matter what.
  • My personal fav: Being told to pray to caste out the demons and stronghold that the devil has over her.
  • You got the bad luck of the draw. Really? Really?? Would you say that to someone who birthed a child with a disability? (have heard that one monthly, just this morning from our dentist)

I don't write these to make any of you feel bad. And I certainly don't mean for any of you to have to feel like you need to be soooo careful when talking to mom's like me. I'm also not saying that I don't value your advise or support. All I am saying, is please think about some of the things you say, or the advise you give. I also admit that I am guilty of doing and saying things like I have listed above, especially 6 years ago and prior to that.

So friends, feel free to post comments of other "things not to say" or things that drive you nuts when people say them. It is important to try to share these things as sometimes, they can even sting when we receive them, especially when you are new to this life, or are just figuring it out. I pretty much laugh a lot of these things off now-a-days. Julie and Dorothy and I have had a great time lately whenever one of us says something that one of our kids have done that is wacky, one of us is sure to ask if the mom has reminded the child that the behavior could result in a loss of privileges if they do it again. Cuz that will stop them.

Thursday, February 9, 2012

No friends, a blessing?

I was thinking last night about how much we have been able to shelter Akila still, even in 7th grade. She is not even close to getting involved in risky behavior like some middle school kids are already doing. She is still fairly oblivious to drugs and alcohol and how many teens get sucked into it.

I am not naive, I fully expect that some day, she will be intrigued by it all and get into that junk. Again, if I am wrong, thank you Jesus. But I like to be prepared emotionally, rather than surprised.

I am often sad about the fact that Akila doesn't have a good friend, let alone any friends. When I was in elementary school and junior high, I had a best friend and we were inseperable. I get sad when I realize Akila will not have those memories. Yes, she will always have Imani and the boys, and some good memories with them, but it is different to have a friend outside of your family.

What I realized last night, is that this is probably the very reason why she isn't getting into any bad stuff yet. Often, especially for kids with FASD, it is your friends who expose you to new things, good and bad. She still doesn't know what "cutting" is, she has never heard of it. I am trying to keep it this way as long as possible. She will do it to get attention when she learns about it.

I fully know that when she is placed outside of our home, most likely in a Residential Treatment Center, she is going to learn all kinds of stuff. I had expected her to learn stuff when she was in the crisis home, and amazingly she didn't.

I am dreading the day when she starts to be aware of some of the yucky things in our world.

Wednesday, February 8, 2012

Unique family

This morning, Zeke knocked a lamp over in our pool room and it got all messed up. I saw it hiding in a strange place and asked what happened. Imani explained to me that Zeke knocked it over, and hid it so Akila wouldn't see it.

You know you are living in a unique family when you don't hide the broken lamp (it isn't even really broken, not that I would care) from your mom, but from your sister. Akila is constantly looking for things to nag on the kids for. There is a spot on the floor in our kitchen, probably some juice that any one of us might have spilled. It of course has been there for several days as I don't clean much. When she saw it, she launched into an investigation of who did it.

I always tell her that I did something when she is trying to find a culprit. Then she can go off on me instead of one of the kids. One of them finished the box of Crunchberries last week, and Akila raged over it and was going to attack whatever kid did it. I told her I ate the last bowl, so she attacked me. I'll take one for the family. Or a few hundred.

The other evening, she was upstairs playing dolls withe her PCA. I was in my bedroom folding clothes. The other kids were downstairs and did something that made a loud noise. She came into my room, opened the door and asked what that noise was. I honestly had barely noticed the noise, but right away just told her that I plopped the full laundry basket on the ground. Oh, she said and returned to play. The brilliant PCA then had Akila turn on the radio for a little background noise. If I had said I didn't hear or notice the noise, she would have gone downstairs and launched an investigation and yelled at the kids for making the noise, even if it was appropriate.

Sometimes I will put something off on Michael also, just to spread the love. Only when he is at work and she isn't going to go and pound on him. She will just say a few unpleasant things about him, and hopefully move on. I have tried the "it is not your problem" approach and the "mind your own business" approach (in a soft way), but neither of these work. She just wants to go off on the kids for anything, and 90% of the time, what she is going off on them about is not anything wrong that they are doing. And then when they are doing something wrong and she goes after them, it makes it harder for me to be able to discipline them, after they just got smacked or something like that.

So, yes, we are a unique family. My kids fear the wrath of their sister more than their parents.

The mail came with a bag of emotions

I received 3 letters in the mail yesterday regarding Akila. One was from the county saying her MA (Medical Assistance) was reinstated. I had to fill out her renewal form in December, it was due Jan. 8th. I mailed it Jan. 6th, and of course made a copy before I sent it and a note as to what day it was mailed on. Jan. 25th I received a nasty letter saying that they would cancel her MA on Feb. 1st because I didn't supply the info requested. I called. I sat on hold way over an hour.

They had not received it. I asked for a fax number, and faxed it that day. Went to CVS on Feb. 1st to get an Rx and they said her MA was cancelled. I called, pressed the button that tells you what forms they have received in the last 30 days. They received her renewal form on Jan. 10 and Jan. 25. I pressed 0 to talk to a genius. I waited on hold over an hour. Genius asked me when I sent it in. I said Jan. 8th and Jan. 25th, and according to THEIR system they received it Jan. 10 and Jan. 25. She said oh. Messed around in the computer then said, oh yes, we did receive it. I held back my tongue when I wanted to say "TWICE". She then said she would TRY to process it tomorrow.

Anyway, I hate their system. So one of the letters I received yesterday was from the county saying it was reinstated and the eligibility reason was "disability/DD waiver". Now, I sat and looked at this for awhile. Does that mean she is on a DD waiver, or not? Kind of confusing, but I could see it where we would get off the waiting list, be on a waiver, and I wouldn't know it. It is not beyond what I would believe could happen since I know how they run the show.

The next letter was a letter from the county saying they "concur" with our request for out of home placement. The letter gives us the name and phone number of our placement worker, but tells you nothing about what the next steps are, or what should be done. I of course called the placement worker. But not until after I sat alone in my living room in a weird state of semi-shock. There was a whole bag of twisted emotions I was feeling. Relief. Sadness. Grief. More sadness.

It will still be quite the process I think before something happens. There is a moratorium on group homes, so Residential Treatment Center (RTC) is probably our option. But even that will probably take awhile. The placement worker is hoping to have our info by end of the week (really, can I come down there and pick it up and walk it to your desk or drive it to your location??). But we have been jumping through hurdles forever, and this is like hurdle #27. I hope to hear from him next week.

The third letter I received, was Akila's report card, along with an invitation to the honor roll ceremony. She made the honor roll again. Awesome. Fantastic. I should have been ecstatic. But again, mixed bag of emotions. I hate how crazy it makes us look that she is doing well in school. It would almost be easier if she was nutty everywhere. But I know it is a blessing she is doing well in school, and in large part is due to some excellent staff who are working with her.

The first letter made me angry and annoyed. Sick of wasting my time with a system that is inefficient. The second letter made me sad and relieved. The third letter made me proud and sad. The mail was full of a bag of emotions yesterday.

Tuesday, February 7, 2012

The streak is over...

The streak is over. I am very thankful for the 5 days of general calm that we had, but they are over. It was not a HORRID night, not at all. But there was some hitting and kicking.

Our new PCA was working, and Akila started to perseverate on wanting something new. She knows that we have a locked room in our nasty basement that has tools, junk, and gift stuff in it. Gifts that I buy on clearance or for really cheap and store. Some are things for our kids next bdays, some are for when they are invited to friend's bday parties. Akila wanted me to get her something from the room.

And she would not stop focusing on this idea. The fabulous PCA did a fantastic job of trying to distract her, to no avail. She eventually started to kick and hit me a bit, and the PCA tried harder to distract. It is a very awkward situation, for both of us. It has happened with other PCA's. I know it has to be weird for them to see her hitting and kicking me and to feel helpless. Welcome to our world.

At one point, Akila took a swing at my face (didn't connect at all), and I grabbed her wrists and was asking her if she wanted to go play, or have me restrain her- as she was getting close to needing to be restrained if she were to keep on escalating. She was still fighting my restraint of her wrists, and started to sob a bit that she wanted to go home (to her birth home- where she never lived, but will focus on when she is upset). The PCA was standing behind her and put her hands on Akila's shoulders and started to rub them.

Akila melted. She just kept on sobbing about going home, and that I am her fake mom. After a minute or so, I left the room and went to hang out with the boys. The PCA continued, and eventually guided Akila into the kitchen for her evening meds. Brilliant! What is so cool about this, is that if I or Michael were to do the same thing (which we have tried before), it would have escalated her. It might not work the next time either, but it worked this time, and I am so thankful for that. I did not want to restrain her. I never want to restrain her.

From her couple of hits she got on me, I had a few red marks on my forearm, where you could see her finger tracks. Later on, I saw her eye catch the finger tracks and stare at them. She said nothing nor did I. Again, it was a fairly mellow night thanks to a fantastic PCA, but nonetheless, I am sad the streak is over.

Monday, February 6, 2012

Thinking putty

Often kids with FASD have a hard time sitting still, and especially when at church or a sibling's band concert. Or even in a restaurant. Sometimes when we go to Don Pablos', they will give the kids each a ball of dough and some cookie cutters- I always loved this.

There is also something called Theraputty that you can get, or a different brand that my friend Dorothy clued me into last month. It is made by a company called Crazy Aaron. I actually love it also. We used it while at the Legal Aspects of FASD workshop in January. Yes, there were 3 or 4 adults that sat and played with putty during the presentation. It was hugely helpful to me as I have a hard time paying attention in seminars- can't imagine how hard it is for kids with attention issues.

Anyway, I have put a link on the right side towards the bottom for the Crazy Aaron Thinking Putty. Remember, any time you need anything off of Amazon, feel free to use the search box on my blog and I get a tiny kickback. Thanks to all of you who have used it!!!

HORRID streak broken?

I mentioned that last Wednesday, Akila came home from school with the pukes. Initially, I assumed she had the stomach bug that many people have been getting. She threw up twice at school and came home and watched TV for the first time since she has returned home in early December. By 2:00, she was totally fine, eating like a horse and ready to be on the move. I did give her a Zofran tablet when I got her home from school.

Akila has Cyclical Vomiting Syndrome (CVS) and use to take a medication to prevent the vomiting episodes. We took her off the medication over a year ago, and she has hardly had any issues with CVS since. I'm pretty sure that she had an episode last week, and not the stomach bug. It only lasted 6 hours, and she bounced back very quickly. As I said earlier, the nice thing was that it did mellow her out. And oddly enough, she has been fairly mellow since.

We have had 5 days in a row of no violence. That means Wednesday, the day she was sick, and Thursday. Thursday- she was close, and was being challenging when the therapist was over, but she did get her way that night so things didn't go too far south. Friday, we only had 1 hour after school before she went to respite and she was very pleasant. I picked her up from respite yesterday at 4:00 and we didn't get home until close to 6:00 as we went to Walmart to spend her token money. Yes, it takes her FOREVER to choose something.

Last night went pretty smoothly and I am so thankful. It is too soon to say if we are on an official "decent" streak with her, or if it is just a fluke. She is the kind of child that will have a few bad weeks followed by a good week (which would not be classified as good by the majority of people parenting typical children). What is hard, is that she had 34 HORRID days in a row. Not bad, but HORRID. And 34 days is a long time to live in HORRID- it is a record as a matter of fact. One that I pray we are out of, and I also pray that we do not break this particular record.

Saturday, February 4, 2012

FASD- takes potential away

Alcohol is a teratogen. This means that it can disturb the development of a fetus, and cause a birth defect. There are many factors that can determine if the fetus will be effected by prenatal exposure to alcohol. The mother's diet and metabolism, the timing of the alcohol consumption, the amount of consumption, the immune system of the fetus to name a few.

Some women who drink very lightly during pregnancy, will have a baby that received brain damage, and some will not. Some women who binge drink, will have a baby that received brain damage, and some will not. There are so many factors that we do not understand fully that will impact if the baby. It has been said and written many times, that drinking during pregnancy is like playing Russian roulette.

What I say about it, is that drinking during pregnancy can take away potential from a child. There kids with brain damage that are all over the Fetal Alcohol Spectrum. Some receive facial features (there is a 3 day window that they have narrowed down when they think fetus's receive the facial features of FAS- day 19, 20 & 21), some end up with IQ's that are below 70, some end up with physical birth defects, some end up with ADHD, some end up with a whole host of cognitive delays and the list goes on.

Those of us who are involved within the FASD world, know that there is more. I know that the majority of crimes and gang stuff that are going on in my inner city neighborhood, are tied to FASD. I see how my neighbors are obsessed with alcohol and drugs. I think back to the at risk teenagers that I use to work with, and I see FASD all over in them. But there are also a ton of kids (and adults), who were not damaged to the point of where they will ever receive a diagnosis of FASD. They are functioning fairly well in society, getting by or even better. But the alcohol that was consumed when they were in utero, more than likely took some potential away.

My mom drank when she was pregnant with me. I wonder if I might have done better with math and science if she had not drank while carrying me. I will never know. I am still amazed at how many people think it is OK to drink while pregnant. I was talking with a woman in November who has a friend in a birthing class who's instructor said it was OK to have a glass of wine a day. I actually tried to find out where she was taking the class, but was not successful.

Let's get the word out and prevent these devastating disorders. Let's stop taking potential away from our children.

Friday, February 3, 2012

Service dog

A friend alerted me to this article on a boy with FAS and his service dog. I have thought of this before, and probably should look into it. If the dog came trained, we might be able to do it. Our experiment with a puppy a few years ago did not work with Ms. Akila. The challenge would be if we could get one that was a non-shedding one- or the kind that shed as little as possible. Both of my boys are allergic to cats and dogs and have asthma.

Thursday, February 2, 2012


It is so hard to be patient when you know something is right. I know it is time for Akila to be placed out of home. I know it in my head and in my heart. This has been a very hard realization to come to, but I am there. And I am not very patient. Not when being patient means watching my other 3 children be attacked, and myself and Michael as well.

But here is a hard fact. Funding is slim for county and state in this area. I can so easily see this placement committee, whenever they finally have a meeting which is another beef of mine, placing a family asking for out of home placement before us, because we might be viewed "as having our act together". We are a two parent home, I am sure there are some in a similar situation without two parents involved. We are probably economically doing better than a good deal of families they are working with, although we are still quite behind from the 3 months of unemployment. We are probably more skilled than many of the families in a similar situation.

Does this make sense? Not to the person who is sitting here getting their butt kicked (that would be me). But I can see from the county case worker's perspective, that it might make sense. If they have 4 placements available (that is a random number I threw out), and they have 10 families asking for out of home placement, they have to look at these kind of factors. This is assuming that all 10 of these families have children who are being violent or somewhere on the same continuum of issues.

I wish someone would open their eyes and stop shoveling money into juvenile detention centers and prisons, and put it in these programs so we can prevent kids from getting involved with the legal system. I am assuming it is less expensive to put them in a group home than in juvenile detention or jail.

When we are feeling down, or frustrated, there are always others who's lives seem more challenging and we can look and say that we don't have it so hard compared to others. I know there are probably families who have a more difficult time. But that is pretty hard to think about when we are in constant crisis.

Wednesday, February 1, 2012

Good timing

Today, I was scheduled to have a tiny surgery at 11:00 to have a cyst removed which I talked about here. It was in the surgeon's office, and they just use Lidocaine to numb it first and then remove it. Just after 9:30, I received a phone call from school that Akila had thrown up. I was really bummed out on the timing, as I didn't want to last minute cancel this appt. that I had to wait two months for.

I picked up Akila and brought her home. Michael came home from work, and I had the surgery. Akila was very mellow and quiet most of the day. Dorothy, Julie and I were talking awhile ago about how pleasant our kids with FASD are when they are sick. It is sad, but it is when I can enjoy Akila the most. I should have known she was sick when she didn't kick or hit me before school today- the first day in over a month that has happened.

Sometimes, I wish that there was a virus in a pill I could give her, the common cold pill or something. Sounds cruel, I know it. But the reason I want it is good- because I really love to be able to enjoy her. As icky as I have felt today, it was nice to be around her and I haven't felt like that in awhile. 33 days to be exact. Today was the first day in 33 days that she has not harmed anyone in our family. Praise the Lord. And what great timing, considering the minor pain I am which has me a little bit out of it.