Wednesday, September 28, 2011

Team meeting

We have a team meeting tomorrow at the crisis home. We tell Akila this is when we talk about how she is doing and when she might come home. This translates to her mind that she is coming home after the meeting and has been telling me for two weeks (since the last team meeting) to tell everyone that she is ready to come home. I just tell her that I will tell the team that is what SHE thinks- you know, she has learned her lesson after all.

This morning, her aide at school called to tell me that she has been really horrible and by 10:30, she had pulled her out of class twice to talk about her attitude. She said it had been really bad and wondered if we should call the crisis home and have them come and get her. I asked to talk to her. I then proceeded to tell her that it was obvious to me that she had not learned her lesson if she was being this rude at school and showing so much attitude. She of course disagreed and said she would clean up her act.

Michael and I were just about to leave to go have lunch with her. We did, and then talked with the aide some more. She said that Akila has been really horrible so far this year, especially the last two weeks. I told her that I think she is getting more "crap" from Akila because Akila is most comfortable with her. She doesn't have us to beat on, verbally or physically, so she is letting it out on the aide (who has been working with her for 3 years). I told her I was really sorry, but thankfully she understands that we don't have much control of the little twirp. Yuck.

When she called this evening, she was once again telling me that she is ready to come home tomorrow. I told her that she won't be as it is very clear to me that she has not learned her lesson based on her attitude at school. She disagreed, over and over. And over and over... She thinks that we should bring her home and she will then prove to us that she behave better. I told her that I would need to see the behavior first. She disagreed, over and over. And over and over.

Tuesday, September 27, 2011

Respite blessings

Akila has been at the crisis home for 3 weeks. It feels strange, it feels good, it feels yucky, it feels... peaceful. I like it, and I don't like it. Lots of mixed feelings as I have blogged about several times.

I'm going to focus today on the blessings of this bit of respite, the things that I want to make sure I appreciate.
  • Unlocking. We have been able to keep the safe that stores knives and scissors open and unlocked, as well as the safe I keep in the bathroom with my make up and hairbrush.
  • Sleeping. Sleeping in 1/2 hour longer on school days, and having no hassles getting the kids ready and out the door.
  • Bedtime. Can't tell you how weird it is to just put the kids to bed and be done. It doesn't take an hour or longer. And I'm not totally stressed and feeling mentally and physically exhausted when finished.
  • Leaving. I went to a Twins baseball game last night with my brother Tony, who is in town from Virginia. I just left. No drama, no big deal. Mom went out for the evening, and I didn't have to worry about what was going on at home.
  • Date night. We took Zeke on his date night last week, and didn't have to get phone calls the entire time of chaos at home, and were able to come home and talk about it without drama.
  • Hygiene. When I tell a child to take a bath or shower, they do so with very little whining. We were having major issues with getting Akila to shower.
  • Organizing. I can clean out the hall closet or some other area without worrying about her seeing me doing it, and wanting everything she sees in the closet. I can take old clothing to donate at Goodwill without hiding it from her, or old toys.
  • Outside. Kids can play outside, play with neighbor kids, and there are no issues that I have to deal with every 5 minutes.
  • Games. We have actually been able to play some games with the kids, like Monopoly- without having meltdowns and game boards overturned or ruined.
  • Thinking. My brain has been able to take a rest. I feel like it is always in hyper-speed mode, thinking ahead, trying to avoid situations/rages/issues.
  • Enjoying. I have actually been able to enjoy Akila more than ever. When we have our visits with her, she is so happy to see us, that her behavior has been excellent. There has been the sadness and whining to come home, but that is to be expected. But it has been really nice to spend time with her without the constant issues and fights. It is almost like the beginning of a relationship, when you are dating someone new.
  • Siblings. The other 3 kids, although they miss Akila and want her to come home, have been able to play like "normal" kids, without fear of being hurt, without fear of doing something that would spur Akila to hurt mom or dad, without having to hide things from her. They have for 3 weeks played nicely, with only the typical sibling issues (don't want to make it sound like there are no fights or anything like that!).
These are a few of the tiny little things that have nice the past 3 weeks. Again, don't get me wrong, I truly miss Akila. But I can also tell that this "break" has been good for all 5 of us. We have been able to let our guard down, smell the fresh air, and breathe. As hard as this break has been, it has been good. God knew we were at the end of our rope, and He gave us a much needed break.

Monday, September 26, 2011

Nick & Suzanna's wedding

Nick & Suzanna, the happy couple!

Me and my two older brothers, much older!!

We went to my nephew Nick's wedding on Saturday in the St. Cloud area. His new wife is Suzanna, and she is awesome, they make a great couple. The wedding was beautiful, and our whole family enjoyed it. My brother Tony who lives in Virgina flew in for the wedding, so it was nice to see both of my brothers.

Akila came with and was acted beautifully the entire time. She did become sad when it was getting close to time to go, and on the ride home. When we were saying goodbye to Tony, he mentioned that he is coming to stay with us on Monday, today. Akila then grabbed on to that and perseverated. She thinks she needs to come home from the crisis home so she can see uncle Tony, permanently. We listened to that the majority of the ride home.

She was once again telling me how she had learned her lesson, and that she wouldn't be mean anymore. I asked her how her behavior has been at the crisis home. She said good. I asked if she had kicked any of the staff. She said no. I know she kicked at least two different staff last week, and took a swing at another staff member's face, but had to stretch so far that she did not connect. She told me she has not kicked or tried to hit them. I said nothing in return. A few minutes later, she admitted to kicking one staff. But it was because she was mad and annoyed.

I reminded her that at home she would get mad and annoyed also. But she is convinced that she won't hit or hurt us anymore. I know that she truly thinks this, and this is what is heartbreaking. I can't tell you how much I wish she could come home now, and not be violent anymore. My heart desires this so much that it hurts.

Thankfully, she got out of the car without a scene and all in all, it was a super time with her. I am so glad we brought her with, as we debated if it would be a good idea and in the end, decided to take her with. She was facinated with the wedding. Moved to an aisle seat by herself in a different row so she could see and take it all in. Went through the receiving line 3 times as she was so obsessed with how beautiful Suzanna looked. It was sweet.

She also perseverated on the fact that she was not a bridesmaid and was not happy about this. We left the reception before the bride threw the bouquet, and this is good as she was convinced that she was going to fight tooth and nail to get it. We explained that it was for single women, over 18. She did not care. She wanted to sit at the head table with the bride and groom, and didn't understand that it doesn't work that way. We arrived at the reception before the wedding party, and of course she had to go and sit at the head table for awhile.

Thursday, September 22, 2011

Holding the course

On Tuesday night, Akila kicked a staff at the crisis home. Last night when I picked her up before we went to the hospital, she was very upset with a staff person and was yelling at him. The last 3 days, she has been obsessing again with the fake fingernails.

All this to say, I think we are close to her letting loose at the crisis home. What an odd feeling. I hate it- I wrote about it here a little over a week ago. I am having the mixed feelings of wanting her to rage for them, yet not.

She gets to call us 3 times a day. I may have to change this on school days. Three calls in an evening is too much, basically every hour. And she has nothing to say. I try to ask about her school day, what she ate, generic things like that. Her answer is almost always "nothing". She just wants to complain about something, mainly when she is coming home.

Of course, the last 3 days, it has been the fake fingernails. I told her the first two times she called, that if she didn't stop asking about the fake fingernails, that I was going to hang up. I had to hang up. She wants to make a compromise. She will never call again and cry to come home if we get her the fake fingernails. Right. I believe that. The hard thing, is that she is being sincere. She thinks she could really not call and cry to come home again. I know that she won't be able to control that.

The last few days on the phone, and seeing her last night, she seems a little more "back to normal", that is Akila's normal. Which is why I think she might be close to showing them the real her. She has been there for 3 weeks now, and it has been peaceful at home. I am over the initial horrid emotions but it still feels weird, yucky.

I have been enjoying the little things that we feel during this respite. It is nice to not have to lock up the knives. We can sleep in a little more because we don't have to deal with huge drama in the morning before school. Weekends, I can truly sleep in as Akila is my alarm clock. Bedtime is a breeze, wow I didn't know it could be so easy. It has been nice.

But a small part of me this week has been wanting to say, let's have her come home now. I know this is not a good idea, it is not the right time. I fully know that when she returns home, she will return to her "normal". I know it won't be good. I know that the Psychiatrist wants her to stay in the crisis home while we taper off meds and try new ones, so it is easier to measure how she is doing on the meds, without the "family factor". But I do miss her.


A huge challenge with most FASD kids is lying. Some people think of clever things to call it instead of lying, kind of like not calling stealing, but saying something like they have "ownership issues" or something like that. Akila has always had issues with lying and she can tell some doozies.

Often they are very grandiose things like I have cancer, we were in a major car accident yesterday, we are flying to China to adopt 3 children next week, my sister died (never had a sister), etc. Sometimes the lies are on smaller topics, like we went to the Mall of America yesterday, or my mom bought me something that I didn't buy her, or little things like that. I will never forget a few years ago when I was going to an IEP meeting and beforehand, she was telling me to tell "that dude" that she really has 12 siblings and that we live in a 10 bedroom mansion. I had no idea who "that dude" was. At the meeting, I met the dude- he was the new school psychologist. I had forgotten about what she wanted me to tell him though (not that I would have gone along with her lie!). Throughout the meeting, I could feel him staring at me from time to time, it was very odd. Towards the end of the meeting, I was informing her new team of her issues with lying and gave them examples. I asked them to email me any lies she might say as we try to document them. He then said, "so you don't have 13 children and live in a 10 bedroom house?". I laughed and said no. He had bought right into her "creative stories", and was trying to get a grasp on me throughout the entire meeting.

But sometimes, an even bigger problem than Akila's outright lying, is her messed up perceptions. Another consumer at the house, said he was going to hit her, but never did. The threat was enough. In her mind, she thinks he hit her, she is convinced of this. She told staff, she told me. The staff are basically 1:1, and are very good at keeping things like this from happening. Last week, when she was trying to convince me that this other kid had hit her, as I pushed for more info, she basically admitted that all he had done was pull her coat. That, along with the threat, was enough for Akila to think that he had actually hit her.

Two nights ago, we were on the phone. I heard a staff person tell one of the kids to get away from Akila and give her some space while she was on the phone. The boy did touch Akila's arm. Akila's perception was that he pinched her. There was no mark, and the staff person was right there. Last night, she tried to tell me how this kid pinched her.

We have the same problem at home, especially during the rages and restraints. If our hands end up anywhere close to her neck while trying to get her into a restraint while she is attack mode, she is convinced that we have choked her. I have tried to explain what choking is to her, as we have never gotten close to choking her, but she is positive that we were "trying" to choke her. And she really believes this.

FASD kids are often known to have poor skills are reading social cues, and things like body language and stuff like that. This is very true of Akila. This deficit, tied together with her lying and messed up perception skills, is a pretty dangerous mix. This is what has lead to a ton of families and staff that work with FASD kids being falsely accused of wrongdoing. I know of several families who have been put through the ringer while their FASD kid has falsely accused them of some wrongdoing.

One of the things that is so sad about this, is that it makes it really hard to deal with and work with a FASD kid if there was true abuse. How could we believe Akila if something ever did really happen, without some kind of obvious proof? It is the boy who cried wolf syndrome. This is what makes our children so vulnerable, and so hard to protect.

I can easily see us in a situation in the future where Akila has wrongly accused us or someone else of doing something. I can only pray that it doesn't happen, and if it does, that it would all work out. This is why I recommend to any families out who are loving and raising kids like this, to document. Document. Document. Yes, it feels weird to have a file in my email inbox of the "lies" that school staff have sent me. It feels kind of weird to be gathering that info up on my daughter. But I am doing it in her best interest, our best interest, and for the best interest of all people who work with here really. Hopefully, I will never have to use this file.

Tuesday, September 20, 2011

Fake fingernail therapy

Akila called three times this afternoon/evening. I might have to ask that they cut her calls from 3 to 2, on weekdays at least. I feel like I am on the phone with her every hour in the evening. The good thing is that she wasn't perseverating about coming home. She was back to an old obsession.

Fake fingernails....

Frankly, I was very relieved that there was a few miles in between us tonight on the phone- if there wasn't, no doubt she would have escalated and been hitting. I am going to go and visit her tomorrow evening. I will take her out to dinner, and she wanted to do something else. Getting fake fingernails at the nail salon was her brilliant idea. I calmly said no. And we went round and round like we have umpteen million times on this topic, my most favorite topic of all. She must have seen someone today with some pretty fake fingernails. God help me.

She wouldn't get off the topic, until I threatened that I was going to end the call if she brought them up again. She was trying to make a compromise. Hahahaha. No my darling, I will not compromise on these stupid things, which have been the instigation of at least 100 rages over the past 3 years. Have caused me many bruises, scratches, and headaches. I have compromised several times, and where did it get me? Right to rageville. No dear, mommy has learned her lesson. I know that you keep telling me you have learned your lesson, but my gut tells me otherwise. Sadly.

I could not think of something for us to do, that is free or inexpensive. It is suppose to be rainy and chilly, so a park is out of the question or something outdoors. Finally, I remembered that she has been begging me to go and see Elijah at the hospital again, so that is what we settled on. Perfect. I get to hang out with her, Elijah and Julie. Now I am looking forward to it even more.

I just pray that she doesn't bring up the fake fingernails. I need to do some deep breathing or anger control skills (the ones we have tried repeatedly to teach her) when I hear the term fake fingernails. I am pretty sure that if you hooked me up to some machines, you would see my blood pressure rise when the term is brought up. And I don't want to pass judgement on any of you who wear fake fingernails, but every time I see someone with them on, a little bit of vile comes up in my throat. I might need some therapy, I have issues with fake fingernails.

Sunday, September 18, 2011

Sunday with Akila

Akila went to church with us today. Michael has been fighting a bad cold so he stayed home. The kids and I picked her up and went to church. She was very good during church, leaning on my shoulder and holding my hand the entire time.

We went out for lunch after church, and other than a few issues with feet under the table, she was great. This is almost always an issue at a restaurant. If another child accidentally touches her foot from across the table, she goes nuts. Today, she asked nicely for Hezekiah to stop, the first two times. Then she got mad, but didn't lose it. She is just so happy to be with us that she is working hard to control herself.

On the way back to the crisis home, as we were getting close, she started to say that she didn't want to go back. I said I know, but it wasn't time to come home. A minute or so later Imani was crying and the boys were being brats and saying something snotty to her. I told them to be quiet and asked Imani what was the matter. She burst out crying saying that she didn't want Akila to go back to the crisis home. I said I knew it was hard, but is what we need to be doing right now. Akila leaned over and hugged her, and the two of them sat holding each other between the seats.

Now, here is what is kind of bizarre. A typical brained child, would have more than likely started to cry with Imani, and gotten as emotional if not more emotional than Imani. Not Akila. She was almost smiling, and feeling cheerful that her sister was crying. It reminded me of when our dog Hibeam died over a year ago and she was so intrigued by all of our tears and she just sat and watched us all cry. When we pulled up to the house, she comforted Imani and told her it would be OK and that she would see her next weekend. Obviously, this was sweet and loving, but also quite odd.

The emotions of this journey are really interesting. They hit us all at different times when we least expect it. I was at Walgreens picking up some stuff this evening and Akila called crying that she wants to come home. Not the easiest phone call to deal with in a store. I had to walk outside to talk with her. Next weekend my nephew is getting married in the St. Cloud area. We are going to take Akila with, although we thought about not taking her. It will be a good test to see how she does, how we all do.

Saturday, September 17, 2011

Sovereignty of God in FASD

I believe strongly in the sovereignty of God. Without this belief, I would be nothing. I believe with all my heart that things happen for a reason, and that God has a plan. I know that Akila was pre-destined to be my daughter and I her mother, and for this, I am eternally grateful. Grateful.

For it is through Akila, that I see my own sinful heart reflected daily. I am reminded of my weaknesses and my failure as a human constantly, and of God's forgiveness and the sacrifice of His son for my sins. Do I deserve this? NO!!!! Was that loud enough for you all? NO!!!!!!!!!!!!! NO!!!!!!!! Please, stop with the, "you are amazing and Akila is so fortunate or lucky to have you and you don't deserve this and there is a special place in heaven for you and does she know how fortunate she is to have you" and the list goes on and on and on and on and on and on and on and on and on and on and on...... you get the picture.

Let me say this loud and clear. Akila does not deserve the brain damage that has crippled her life. Please stop feeling pity for me, and feel compassion for her. Can you imagine how hard it is to be her? So many of my friends imagine how hard it is to be me. Don't get me wrong... I truly appreciate your caring and support. But really, Akila is the one who needs your support, prayers and love the most. She is the one who is so confused right now why she is living in a home without her family. She is the one wondering when her mom and dad are going to come and save her from this "terrifying place" (her words, it is a wonderful home, but it does have other children who are challenging, and I can understand how they could scare a child. Within a week or two, we expect her raging to start, and then she will be the "terrifying one").

Akila is the one who does not have any friends to sit with at lunch. She is the one who her own mother hates to shop with. She is the one who her siblings cringe when she comes home with the PCA. She is the one who her father tries not to show his dismay when she wakes up early in the morning. She is the one who has to sit in countless Dr. meetings and listen to all the "bad" things she has done over the past month or two. She is the one, who was innocently growing inside of a woman's womb, holding on for dear life as she had a chromosomal abnormality called Turner Syndrome which has nothing to do with her FASD diagnosis (1 out of 1,000 fetus's with this abnormality spontaneously abort- so she already was a fighter in the womb to the enth degree- 15% of all miscarriages are Turner Syndrome babies).

While she was battling this chromosomal challenge, she was also waging war against heroine and alcohol that her birth mom was consuming. Now, you might be getting angry and judging her birth mom. Be careful, that is a slippery slope. I pray daily for her birth mom. I know with all certainty in my heart that her birth mom was also FASD. She was married at 14, had a baby with her husband, had another baby with another man, went through alcohol treatment at 16, had two abortions, and then had Akila at age 19. That is quite a lot to do in a 5 year span, especially at those developmental ages. Both of her parents were alcoholics. It was a scheduled C-section, and she was positive for Heroine. The writing is on the wall. She had FASD. If Akila is fertile, which I pray she is not (another post), she will more than likely produce a FASD child(ren).

The instigator to me writing this post, is something somebody I am close to said. When I was informing this person about the crisis home situation recently, this person said, "Well, you threw your hat in the ring and drew the bad hat Barb". Translation: Akila is the bad hat. This hurts when I love her with all my heart and know that she is loved by the One who created her in His image.

This was a sucker punch. If this were someone I had great respect for and was on the same theological page with, it would have hit me to the core. It did not do that, but it did sting a bit. It annoyed me more than anything, and I moved one. But it has made me think about all fo the other comments about what an "angel" I am. And how I don't "deserve" this. Well, let me tell you this now. I am not an angel. And i do deserve this. I am a true sinner.

I believe that in many ways Akila is like the majority of us, but with out all the finesse of covering up our sins. She wears her sins on her sleeves, we hide ours under our facades. She has no facades, she says it like it is. She does not have the filters that the majority of use do, she says it like it is, curse words and all, gore and all. We all have a certain amount of evil in us, but we like to keep it under wraps, and hide it under our bible memorizing abilities, or our good deeds, or our home schooling, or our volunteering, or our hard work, or our committee work or .... the list goes on. Akila wears it on her sleeve. Her approach is kind of refreshing. At least we all know what to expect and we know what we are walking into, that is for sure.

I am really on a rampage here, aren't I??? I am about ready to get off of my soapbox. My point is, please don't think of Akila as a burden, or as an evil being. In so many ways, I think that you and I are probably more full of evil than she is. She is just a sweet innocent disabled girl who is doing the best she can with the tools that she was given. She has organic brain damage. She sometimes, and when at home, rages violently, often. But her family loves her dearly. And her God loves her even more so, as He has pre-destined her to be His, and to be a part of my family. And for that, I am so very thankful. I have learned more about God, about the Bible, about my husband and about myself through Akila than I ever have in my whole life. And for that, I am grateful.

Please don't be offended if you have ever called me an angel. Or told me there is a special place in heaven for me. Or many of the other statements I heard multiple times a week. Just know, that I prefer your energy to be spent on Akila. She is "the least of these" (Matthew 25:40). She needs your prayer, your support. We do also, but she really does. Especially now. When she is scared. Lonely. Confused. We appreciate and need your prayers as well.

Date night with Zeke

We took Zeke out on his date night last night, it was a blast. You might remember the one we did with Hezekiah a few weeks ago was kind of rough- Akila was having a very difficult time at home with the PCA and was raging and we got several phone calls. We knew right away when Akila went into the crisis home that we should get Zeke's date night done while she was there, and probably Imani's also (we usually do them about twice a year, or just once, depending).

We had a great time with Zeke, even considering that Michael has a really bad cold. We went to Olive Garden and then bowling. He even got to play video games at the bowling alley, something we would never do if we had all of the kids. It was really fun- I just love spending this one-on-one time with the kids. They look forward to it all week, and I honestly think that Michael and I do more than they do.

We are going to take Akila to church with us tomorrow, which will be interesting. I didn't write about this yet. The first Sunday she was gone, she called when we were arriving at church. I told her I only had a few minutes because we were about to go into church. She got bummed out because she wanted to go to church. This is the girl who NEVER wants to go to church, and throws fits about it. Of course.

Then last Sunday morning, she called early and asked if she could go with us. I said no. After I got off the phone, it felt really weird. Yet, we are on respite. It was really refreshing to be able to worship without having to worry about her and the issues that she brings to worship. Wow, that is selfish. I prayed about it this week, and decided that we are going to give it a try this Sunday. Truthfully, she doesn't do too bad of a time in church. The biggest challenge, is her worrying about what the other 3 kids are doing and getting upset with them.

She will go to church with us, and then go out to lunch with us, which is kind of a tradition that we do each week. We haven't been doing it really the last month while Michael has been unemployed but it looks promising that should be changing really soon. He got a bite yesterday and it looks like an offer should be coming in early next week. Praying that the Lord works out the details in the offer, and we will be to normal. Oh wait, I guess not normal. Not sure if we will ever know normal again. Not sure if we have known normal for 12 years or so. But we will be back to business as usual, how about that? Either way, God is good and sustains us through all things.

Wednesday, September 14, 2011

Two weeks down

We had the team meeting today for Akila at the crisis home, we meet every two weeks. I admitted to the ladies that I am hoping that Akila rages for their staff and that is a weird feeling. They got it. I am impressed with the staff at this facility, and for that, I am very thankful.

Akila has not raged yet, but has had several issues of verbal aggression and non-compliance. Last night, she had a 45 minute issue over not wanting to sleep in her room because of spiders. The program manager went through her entire room looking for spiders, showed her that there were none, read to her, rubbed her back, played the same game that I do many nights (although, often, I am doing it after she has been raging on and off for a few hours and I am mentally spent!). She said she really thought it might get physical. Akila did cry and sob on and off during the 45 minutes, and cried her self to sleep. She was perseverating on wanting to sleep in the TV room on the futon with the overnight staff (one staff is awake all night and one staff sleeps). Obviously not a choice.

After the team meeting, I picked Akila up for an appt. with her Psychiatrist to look at med changes. Akila was not happy as she had in her head that she might be coming home as we have been telling her that the team talks about that at our team meetings. I told her she isn't coming home and we will meet to talk about it again in two weeks. She was bummed. Then, at the Dr.'s office, she got annoyed. She never likes sitting there while we talk about her horrible Linkbehavior.

For the next 4 days, they are going to stop her ADHD meds and watch for behavior changes. And then next Monday, we will probably start to taper her off of her mood stabilizer. Once she is off of all of them, we will probably introduce some new ones. The Dr. said it is really nice to do this while not having the "family factor" in play. I totally agreed with her. As a matter of fact, we might be looking at extending her 45 day stay if we need more time to work on the meds.

After the appt, I was going to take Akila to finish her school shopping. We were driving right by the hospital where our friend Elijah and his mom Julie are staying, so we stopped by to see them. Akila has been asking about Elijah on the phone and has been sad that she could not visit him the last two weeks, so I was glad we could fit in a quick visit- and I could hang out with Julie every day and not run out of things to talk about!

Then we went shopping, and it went really smooth. Praise the Lord!!!! I was hoping we would not have a meltdown or close call like we did last weekend. The hardest part, was when it was time to go, walking to the car, Akila got really sad. Throughout the entire time I was with her tonight, she would on and off talk about how much she hates it at the crisis home and "stretch the truth" and say that a boy is choking and hitting her.

She told me this on the phone last night, that he had hit her. The program manager told me today that she was with Akila the entire day yesterday, from after school til bedtime and that the boy did not even touch Akila. He did a few days ago say that he was going to, but has not. But in Akila's mind, he said he was going to, so she now has it in her head that he has. I told her that she was stretching the truth, and she then said that he pulled her coat. Oh the slippery roads with these FASD kids and the false accusations. How can you ever trust them? It is a hard one, if there is ever a legitimate issue, it is probably going to be overlooked because of all of her lies. Sad.

The entire way home, which thankfully was short, she was sad, crying and upset. She did not want to go back there. When we got back, she said she was going to refuse to get out of the car. I told her that then I wouldn't be able to come back and visit often or be able to take her out on our visits. Thankfully, this worked and she got out.

Less than 30 minutes after I got home, she called sobbing. She has learned her lesson. I told her several times throughout the night that I can tell she hasn't by what her aide at school told me today. She has been showing a lot of attitude and rudeness at school. This is unusual for the first month or two of the school year. I am convinced this is not because of the current living situation. As a matter of fact, I think she would be worse at school if she were living at home right now. I told her that by the way she has been treating her aide, I can tell that she hasn't learned a lesson. So her new idea is that she is going to be nice to her aide for 2 days and then she can come home.

It is heartbreaking. I hate to see her sad, and I know it is confusing for her. I also know that if she were to come home today, we would be back to the same issues within a day or two. But oh boy does it pull at your heartstrings. It would almost be helpful if she were to call me a name or something. So now I am wishing for her to rage at the crisis home and call me names. Wow, I am a psycho mom!!!

Tuesday, September 13, 2011

Mommy therapy, cheap

Yesterday was a great day. I did something I have wanted to do for at least 15 years. When I was in junior high, I bought a canoe with my babysitting money. In college, it was stolen. I loved canoeing, I always found it so peaceful and relaxing.

Before kids, a few times, Michael and I went canoeing down the St. Croix river and it was totally awesome- I especially love canoeing down rivers. But I have always wanted to kayak. I use to ask for kayaking lessons when we lived by Lake Nokomis as I use to see some group doing it there all the time. I don't know why, doesn't seem like you really need lessons, but it looked like fun. I asked for them for my birthday for years. Never got them. Poor me. :( haha.

A few weeks ago, I posted a status on Facebook asking if anyone has a kayak I could borrow. One friend said yes. On Sunday evening I texted her asking if I could use it yesterday and she agreed. Yesterday was a gorgeous day in Minnesota. I picked up the kayak, shoved it inside my minivan, drove it to Cedar Lake, and spent the day kayaking between the lakes- by MYSELF.

It was awesome. It was just what the Dr. ordered. It was just what I needed. It was a mental health day for mommy. I got nothing done, and I don't feel guilty about it. Even better, after bedtime, I went to the hospital and hung out with my Mad Mommy friends- icing on the cake. Got home after 1:30 am, and don't even care. Today is like my Monday this week.

I told Michael that when he gets a job, I would like to find a kayak on Craig's List by next summer I loved it so much. We could rent a spot at Cedar Lake which is where we swim all the time. Anybody want to go in on it with me? It could be a co-op kayak? haha. Not a bad idea! Great therapy, healthy, good for you, much cheaper than real therapy in the long run!

Disclaimer: I must admit, I can barely lift my arms today. Very sore. Will not be blow drying my hair, that is for sure!!!!

Sunday, September 11, 2011

Odd place to be

I hate the system. I hate FASD even more of course, but the system is a close 2nd place often. Akila has been at the crisis home for 12 days now, and my emotions are more stable. The first 4 or 5 days were very rough, very. It still feels yucky, don't get me wrong, but I am not a wreck on the brink of tears anymore, at least not today. Who knows what I'll be like tomorrow.

I feel so stuck between a rock and a hard place. Obviously, my prayer is that Akila would be healed, cured. Is this likely? Is this really what God's plan for her is? I am going to go out on a limb here and say no. I know there are a handful of you out there who are gasping for breath, stomping your feet and your knees have already hit the floor praying for my soul as you believe I am sinning by not believing in my Lord. You already know that I disagree with your theology. So once again, leave me alone. My point is, that more than likely, after these 45 days are up, Akila will return home and things will fairly quickly be right back to normal.

Do I sound pessimistic admitting that? You may think so. But if you had lived with her for the past several years, you would know that I am just being realistic. Being realistic is a survival tool in our house. I know there is a slim chance that she might be improved, and I would be the happiest mom in the world if so, but I'm not going to expect that.

The real odd thing that I want to write about today, is something that is going to sound horrible. I want my daughter to rage at the crisis home. There. I said it. I know that sounds crazy. But you know there is a reason why I call myself psycho mom!!! ;) No, really. I want the staff there to see and witness her troubling behaviors for several reasons. The biggest reason is so that they can try to help us, and give us their perspectives since they see these behaviors all the time and work with tough kids.

Another reason, is that I would like to have her rages documented by someone other than Michael and I. And the final reason, is that I would like to show everyone that we are not crazy!!!!!!!! Well, we probably are a little, or a lot. But you know what I mean. Lots of FASD kiddos do this, where they reserve these behaviors for their loving families, and the rest of the world around them think they are angels, or close to it. Akila has shown a good amount of her goofy behaviors to others, but not much of the violence, without Michael and I around. A little with a few of the PCA's, but that's it. It would be nice if she would do it for someone else to prove that WE are not the problem.

I'm not sure if 45 days is going to be enough for her to feel comfortable enough to let loose. Now, doesn't that just make me sound like a loving and supportive mom? Wanting my child to let loose and attack staff. I'm not even sure if I should be blogging about this, but it has been weighing heavy on my heart for over a week so I decided to go for it.

Saturday, September 10, 2011

Date with Akila

Michael and I took Akila out to dinner and to buy school shoes on Saturday afternoon. I have never enjoyed shopping with her. You would think that since she is obsessed with shopping, that she would be fun, and in a good mood since we are buying things for her. She is somewhat, but there is a bigger issue.

The issue, is that she always has a certain idea in her head of what she wants, and this is a recipe for disaster. It never works. I will never forget the time that she thought we were going to find hot pink skinny jeans with glitter on them. Or the time that she thought we were going to find jeans with rips in them and sequins on the pockets with the exact design that she had seen some girl wearing. It just plain old sucks.

Trying to get an idea of what she was hoping for in shoes doesn't help either. She wanted Nike's, and that was about all she could tell us. We told her that we weren't willing to go very high in price, so that makes it hard right there when looking at Nike's, although you can find a good deal of them for a decent price. But not the kind she has in mind. And of course, the kind she has in mind, are how do you say it.... GHETTO. There is no PC way of saying it.

We first looked At Dicks Sporting Goods. No luck. Then went to Ridgedale Mall. Looked at about every store that carries shoes, with no luck. Saw lots of great shoes, that Michael and I both likes. But she was looking for a certain pair, of course. Finally, she finds the pair. $84. Of course. I tell her that is too high and it won't work. She is not happy. Of course. Funny thing, is that hey are just a plain pair of white Nike's. Nothing else on them, pretty ugly in my mind. But she must know a few kids with them.

I show her a pair almost exactly like them, that are Nike's, but much less expensive. She doesn't want them because they don't have the circles on the bottom. On the BOTTOM. I explain that people don't see the bottom of her feet anyway. But she is adamant. So I tell her we should leave the store because there aren't any options there that fit our criteria. She wants to just try on the $84 shoes. I say no, that I don't want to tease her. She is starting to get mad. Getting a bit upset. She got a little snotty.

I told her that we should take a break from shopping and go get some dinner and then finish shopping. She didn't like that idea and she was kind of escalating. I had to tell her that we could take her back to the crisis home (I used the name of it though) if she was going to get out of control and yucky, or that we could go have dinner, and then finish shopping. She didn't like this, and asked "What'd I do?" This made me laugh inside. She will say this 4 seconds after she has hit us or kicked us and we are upset with her. She will ask this right after hitting one of the other kids, or right after calling us every swear word in the book. I explained that she didn't do anything, but I thought we should take a break, eat dinner, and then finish shopping.

She finally went along. I can guarantee, if we were not in the current living situation- meaning her living in a crisis home- she would have totally lost it at that point. But, she is aware of the situation, and trying not to lose it. She did not want to go back there early. As we were walking to the restaurant, she said this was the worst day of her life.

We then got to the restaurant, had a nice time eating, got her totally focusing off of the shoes. 3/4 through the meal, she asked if we could go back to one of the shoe stores where she had earlier seen some shoes she had liked and she was keeping as a back up, and get them. I said sure. We went there, got some shoes, and were on our way.

It was nice. We had some great moments of holding her hand, getting some great smiles and lots of loving. But we were also reminded of how much we walk on the edge with her, and how we are just one step away from disaster all the time.

First day of school 2011

The first day of school was very weird. Normally, this is my favorite day of the year. I count down to it. I live for it. This year it felt very different. With Akila going into the crisis home 5 days before school started, it threw everything off. The last weekend of summer, was the hardest one for me by far.

We always take pictures on the first morning before the kids get on the bus, and we still did this year, but without Akila. That felt yucky. I wrote about how Michael and I went and had lunch with Akila and about how nice that was. So I focused on how excited the other 3 were for their first day of school. Imani and Hezekiah were particularly nervous as they were going to a new school.

They all had a great first day of school. The 3 kids, Michael and I went that evening for our first visit to see Akila in the crisis home. The picture above on the right is from the back yard there. That is serving as our official back to school picture, not that I ever do anything with the pictures (a scrap booker I am not!).

We visited her for about one hour, and it went really well. We brought along a football and threw it around in the backyard the entire time. Akila has always been very good at playing catch, with any sort of ball or other item. She is better at throwing a football than either of my boys and is good at catching it also. She had drawn some pictures for all of us and that is what the pictures are of below, her giving out the pictures. I had forgotten to pack her new backpack so we delivered that as well. So it was very pleasant. She didn't melt down when we left either.

She called 15 minutes after we got home, and that was a different story. She was crying to come home and was very homesick. We talked for awhile, it was hard. The next day, I spoke with the program manager for some advise on what to say to her during these times. We were advised not to give her a timeline, since things change and you don't want to let her down. So we just keep saying we don't know how long she will be there. She keeps proposing 3 more days, or next Tuesday. Saying she has learned her lesson.

The manager recommended telling her that the team meets next week and they will decide. She was quite content with that. She wants me to tell the team she is ready to leave, and that she should leave next Thursday, the team meets on Tuesday. I keep telling her to focus on making good choices and behaving well.

She has had pretty good behavior, but some attitude issues. This is what we expected for the first several weeks. I am even nervous that she might not display much of her aggressive behavior while staying there. Sounds funny, but I kind of want/need her to show them that side of her. Hard to explain.

But, all in all, the first day, the first week of school, was a good one for all 4 of our kids. I am very thankful for that.

Tuesday, September 6, 2011

Lunch with Akila

Michael and I went and had lunch with Akila at school today. It is just what my mommy heart needed. We are going there tonight to see her, but I just couldn't wait another minute, and I am so glad we went, for several reasons.

One, I missed not getting to send her off on her first day of 7th grade. That was hard. Two, I am expecting that there is a possibility that tonight, she may be whining to come home, and wanting to know how much longer she has to stay, and focusing on stuff like that. Today, she was all smiles. She was the Akila that I so enjoy.

When we got there, she was just getting through the lunch line. She put her sweet smile on for us, but did not go all nutty or crazy when she saw us, that is not her style. We sat down with her and she was smiling throughout the entire lunch. She told us about her morning and about seeing Zeke in the morning. He had brought her backpack and sweatshirt for her. She had given him a big hug. He has struggled the most with her absence, so I am glad that he will get to see her each day at school.

Her aide came up after she went upstairs and told us that she had told Akila that she understood that Akila was living somewhere else right now and asked Akila what she thought about it. Akila said she didn't like it and that it was scary. She asked Akila if she knew why she was living there and Akila said it was because her behavior wasn't good. The aide asked about what kind of behavior. Akila said that she had been hitting and kicking and stuff like that. The aide told her that if she went home and did it some more, that she would probably have to return to the crisis home. I was thankful for the support. I was also happy to hear that Akila was able to say why she was there, as I have been trying to make sure she understands that.

We will still go and see Akila this evening and bring all the kids with. I am just glad that I got a little time with her today, especially time with her when she was in a good mood, was smiling and happy. My mommy heart really needed that! Thank you Jesus.

Monday, September 5, 2011

Sad mommy

Akila went to Bible camp in June for 5 nights. It was wonderful, I loved the break and it could have been several more days. Angie has taken her for one night twice this summer, and it has been awesome, and wasn't long enough (although we totally appreciated the one night Angie, don't get me wrong!). We tried our first shot at respite through the county in August, the provider only had two nights open the entire summer and it was a Tuesday and Wednesday night so I took them. It was awesome. When she was gone, I will admit I was even giddy.

Yes, I missed Akila, I truly did, but to be totally honest, I was glad she was gone, even relieved. But now, it feels totally different. Yes, there is a sense of relief. I am relieved to not have to be fighting all day and to not have the tension in the house the minute she wakes up. But there is such an overwhelming sadness with her absence and it has really taken me by surprise. It is not at all related to guilt like one person asked me. There is no doubt in my mind that we made the right decision, the pain in my lower back is affirmation enough (it still is hurting from all of the restraining).

I have found myself being able to function each day, and get through daily activities with no problem. But when evening comes, and Michael and the kids have gone to bed, I lose it. I melt down. The emotions all hit me. I suppose this is normal, even healthy. I have a profound sadness in the pit of my stomach. I think it is because deep inside, I know that this is the beginning of the end. That sounds fatalistic, or weird. What I mean by that, is that I think this crisis home is the beginning of a series of events that will quite possibly lead to Akila living out of our home. Ooohhh... did I just type that. It makes it seem more realistic. Now I'm really scared.

I have known for years that there is a real possibility that she may not always be able to live in our home. I have seen the writing on the wall. Her behavior has been progressing and we have done everything we could to try to keep it at bay. But we are close. Last month, at a meeting at Children's Hospital with some Dr.'s, one of them asked how Akila was doing. I said I thought we might be one step away from a group home placement. I then explained her behaviors. This Dr. then said she thinks we are one step on the other side of a group home placement. This really stuck in my head. Not to mention the extreme out of control behaviors we have been fighting.

I'm sad that I won't get a picture of Akila before she heads off on her first day of 7th grade. We are going to go and visit her tomorrow night so I will get one of her then, so that should be just as good, right? She had her hair relaxed on Saturday at the hair salon, and I didn't get to see it. I was grocery shopping literally next door at the same time but didn't stop by. I was dying to, but didn't want to risk a scene. She loves to show off her hair after she gets a new doo. I'm sad to have missed that. We can visit her obviously, but they thought it would be good to give her the weekend to adjust before we visit and we agreed.

Now don't freak out. I'm not depressed, or having a mental breakdown. I'm just sad, and with good reason. Let me have my moment. ;)

Sunday, September 4, 2011

Day 4

Today we went to church without the distraction of Akila. Well, almost. Church is at 11:00, and she still had not called by the time we got there. The past few mornings, she has called around 8:30 am. Sure enough, she called around 11:05. Half way through the service, I went to the bathroom and called her back. We were going to Michael's brother's for lunch after church and I didn't want to call her back in the car like last night, in case she was sobbing again. I didn't want the kids to have to listen to me try to talk her down again.

Once again, she was wanting to come home. I tried to distract her, and ask her questions, like what she had for breakfast, what she was going to to today, etc. But she either wouldn't answer or would give a short answer and go back to her agenda quickly. I told her that we don't know when she is coming back home and that she should just focus on each day and working on showing positive behavior and controlling her anger. This is of course not what she wants to hear so she starts to get a little snotty, the Akila that I know well shows up. I tell her I have to get back into church and to call me later.

She calls later in the afternoon when we are at Dan and Tara's and is complaining about one of the boys at the home who is raging and trying to hit one of the staff. Says it scares her when she sees him doing that to the staff. I tell her that is what Imani, Hezekiah and Zeke have been watching her do to her mom and dad for 4 years, and that it scared them. Asked her if she remembers them crying. She didn't like that. Said it was different. I disagreed.

She told me again that she had learned her lesson. She asked if she could come home on Wednesday. Evidently, she decided to choose a day, and she chose Wednesday for some reason. I said no. They have said not to tell her a certain day or give her a number, since things change and you don't want to let them down or be deceitful. I keep telling her that we both need a break, she needs one from us, and we need one also from her behaviors.

As we were at Dan and Tara's, they pointed out that this is the first time we were actually able to sit and talk without having to run interference with Akila on and off the entire time. We sat and talked peacefully for hours. It was really nice. On our way home, we stopped by Dorothy's house who had a couple of meals for us that she and Julie had gotten for us (thanks ladies!). When we got home, we popped the bake n take pizza in the oven, and sat down for the rest of the evening and played Monopoly (Imani received Monopoly today for her bday from her aunt and uncle) with the 3 kids. We have never done this. Game nights do not go well with Akila. They always end in disaster, especially a game like Monopoly. Akila would never be able to have the patience to play Monopoly.

Driving home, I heard some sniffling from the back of the van and turned to see Zeke crying. I turned the radio off and asked what was the matter. He was crying pretty hard and said that he missed Akila. I choked back some tears and asked what made him think of her at that moment- I was trying to think of if Michael and I had just been talking about her. I have been trying to be careful to not be talking about her in front of the kids. He said the song on the radio made him think of her. We were listening to a Christian radio station, but I don't even know what the song was. We all just gave him a rub on the knee or whatever we could from do from our seats and told him it was good that he missed her and that we missed her also. We also told him that we were going to visit her in a few days. He liked that idea.

We will go to visit her on Tuesday evening, after her first day of school. I am excited and nervous. I am only nervous, as I don't want to deal with her whining to come home. I told her that I won't be answering the phone or calling her back if all she does is whine about coming home. But she won't understand that. She has been there for 4 days, and will probably be there for 45 days. I hope we get over this hump soon.

Saturday, September 3, 2011

Heart breaking

Akila has been calling us three times a day, which is what we put in her schedule. Yesterday, her calls were very upbeat, telling us about what she had been doing, asking us what we were doing. She talked to all 5 of us each time. The other 3 kids do a great job on the phone with her.

It has not been surprising that she has been seeming to enjoy it, I mentioned in the earlier post that this is kind of classic FASD. Stranger anxiety is not always there nor is fear of new situations. But she did call this afternoon and ask to come home because she was bored. I talked a little in this post about how much I hate it when Akila says she is bored- we are almost always guaranteed a rage at the end of it. So, this almost made me cringe. I wanted to say, "give me a break, you are bored constantly at home!!!!!!! That is all I ever hear from you." But I didn't of course. I just explained that she couldn't come home and changed the subject.

Tonight, we took the kids to dinner and to see the new Spy Kids movie, which was really good by the way~!! Akila called on the way home. She started to cry and said that she wanted to come home because she was terrified and didn't want to stay there another night. Well, this of course was tough to hear. I expected it, knew it was coming, but I didn't like it. She went on and on of course. I was trying to ask her what she was terrified of, without using those words as I didn't want the other kids in the car to hear that she was terrified or they will think we are cruel for making her stay there as they might not understand the dynamics of the situation.

She of course couldn't give me any reasons why she was scared or terrified, she just was. And I'm not saying that she isn't, or doesn't have reason not to be, but I was trying to make sure that there was not an incident or something. I did forget to mention that I was also to talk with one of Julie's friends who had a son stay at the same crisis home about a year ago and they loved the staff and were very satisfied with the experience. This was another affirming thing that helped us with our decision and peace.

Then Akila started to go off on the staff for their timing of when they give her the meds. They are doing it differently than how we do it at home. Akila isn't in charge, and she doesn't like it. This is what we constantly fight at home. The Rx label for the Daytrana says to take the patch off after 9 hours, but our Dr. says you can leave it on longer, and to just take it off 2 hrs before bedtime. We take it off at 6:30. Well, they have to follow the Rx to the T, which I understand. So they take it off at 4:30. Akila doesn't like this. We give her her 2nd dose of one of her meds at 4:00, they are giving it at bedtime. We do this sometimes when we forget it at 4:00, it is no big deal. But Akila is complaining about this. What's funny, is that she won't ever take the meds at anytime when we tell her to anyway.

She was also complaining that they wake her up in the morning. This cracked me up. In our house, I practically ground the kids if they are too loud in the summer and wake up Akila. Her sleeping in is our brief moments of respite. When she wakes up, all sanity breaks up and the tension starts, so we love it when she sleeps in. I totally understand that they have a schedule though, and love that they are waking her up since school starts in a few days and they are getting her in the routine.

She kept saying over and over that she had learned her lesson and that she wouldn't hurt us anymore. I so wish that were true. I really wish her brain worked that way. I eventually had to practically hang up on her. It was horrible. I did not like it. I told her that I loved her, and that I missed her. What is really weird, is that I truly do miss her. She has been gone for a night, or for a few nights before and I haven't really missed her like I do now. I obviously don't miss the tension, the raging, and the stress. But wow, is there ever a void. There is a peace, and a void at the same time. It is hard to explain.

Friday, September 2, 2011


I have mentioned how hard it has been with Akila lately. Over the past year, her rages have intensified. Over the last month, they have gotten out of control. She wakes up mad, and is mad all day. The meds don't seem to be phasing her. She fights with Michael and I, her siblings, the neighbor kids. She gets mad at the piddliest of things. We are about at the end of our rope. We have seen her raging starting to take a serious toll on the other kids.

A few weeks ago, I called our social worker and asked what our options are. Michael and I are seriously thinking that we might have to look at out of home placement soon-it is that out of control in our house right now. Since Akila is not on a waiver yet, our options are limited- hence the hoop jumping I mentioned in this post.

Our social worker did call this Monday and say that she was talking with our behavior specialist and they were wondering if we would want priority placement on a bed at a crisis home. I said yes. Didn't know this was an option. She then called on Tuesday and said there would be an opening at the end of this week or beginning of next week and wanted to know if we wanted it. I said yes, with some trepidation in my voice.

When I received this call, I was on the way to pick Akila up from a teen dancer's house where she had spent the day being babysat. I had to pull over on the side of the road to cry for a few minutes and gather myself. I also sent out a couple of texts to some friends- in particular to Dorothy and Julie. Dorothy asked if we should get together that evening. I said I couldn't til after bedtime as I can't really leave Akila home alone long at all with Michael and the kids she is so out of control- and is really bad if I'm gone. So we decided to meet at the hospital where Julie has been living for 45 days now with her sweet son Elijah who has undergone a bone marrow transplant.

Akila was suppose to go out with Angie bowling that evening, but when we got home and Angie was waiting, Akila was not in a good mood (I did not tell her about the crisis home looming of course). I had to change clothes as I was going to a memorial service for a wonderful doctor I have worked with at Children's Hospital who died last month. I had it all planned, that Akila would be out with Angie while I went to the memorial service. Akila had other plans. I just left. Eventually, Angie was able to get Akila to leave to just go and get dinner, but I don't think they were gone too long.

When I returned home, Akila was standing on the sidewalk in front of our home, with her hands on her hips, a chip on her shoulder and a scowl on her face. It went down hill from there. Not too long after that, over some piddley thing, she was trying to attack Hezekiah, and we ended up having to restrain her as she was completely out of control. It basically turned into an "epic" rage. Two hours long.

We videotaped a tiny part of it as the behavior specialist asked us to do this awhile ago and I keep forgetting to. By the time I finally got her to bed at 10:45, I texted Dorothy and Julie and asked if it was too late to come, they thankfully said no. I flew over to the hospital and had a great time hanging out with moms who get it. Even better, I brought the video of the rage to get their input. These are moms who are both parenting challenging kids, really challenging kids. They both watched it, and said you can't live like this. That was really affirming. Thanks ladies, I needed that. As it is in my nature as a mom to wonder if I am doing the right thing. We hung out til 1:30 am. In a hospital. Now you may know why I call myself psycho mom. Lots of other reasons. ;)

Wednesday, I received the call that Akila could go to the crisis home on Thursday. Apparently, this is all much faster than is normal. Usually, you are on the waiting list for a long time, several weeks at least. So then, I had less than 24 hours to get her to the Dr. for a physical, get med orders from the psychiatrist, get some laundry done so I could get her packed, etc. Thankfully, I work so closely with my docs at Children's and the special needs clinic, they were able to make the physical happen. Akila and I spent the last evening, Wednesday, at the hospital watching Elijah so Julie could go home and take some of her kids (she has 11!) to their school open house. This was perfect, as Akila loves going to the hospital and guaranteed if we were at home, she would be raging.

Spent Thursday, getting her to the physical, then she hung out with the PCA while Michael and I went to the crisis home for a 2+ hour intake. We came home, told her we were taking her somewhere to stay overnight and once in the van and driving explained where it was that she was going. We have been telling her for months that if she continues to be violent, that she will not be able to live at home. That she cannot keep on hurting her siblings and parents, and still live here. We have had family meetings, where we all individually declare our love for her, and our desire to keep our family together, but tell her that she has to stop hurting everyone. So, we explain what this house is like, what the staff are like, etc.

She says a few things like she doesn't want to go, and this sucks. We also tell her that they will bring her to school. She says that she wants to ride the bus. We tell her that in a week or two, she will ride a bus and I tell her how cool this since she has always wanted to ride a different bus. She then gets really excited. We get to the house, which is less than 10 minutes from our house. She gets out of the van, walks up to the front door, goes in when they open the door.

They introduce her to the other 3 kids that stay there currently, and some of the staff. We go downstairs to where her room is. She meets the program director and manager. She is giving them nice smiles, her shy smile. We bring her in her room. She is not fearful acting at all, or scared. We tell her we are going to leave, give her a hug and a kiss, tell her we lover her and will miss her, and leave.

Any of my other 3 kids would have been terrified and melting down. But not the FASD brain. It was like an adventure all of a sudden. She called last night, and was telling me about some of the things she had done, that she had watched the Disney channel, swung on the swing set, etc. Didn't ask to come home, didn't cry, or any of that stuff. This doesn't make me sad by any means, as I know it is classic FASD. I also know at some point, it will all wear off and she will hit the point where she will want to come home.

When we left, we had to bolt home, pick up the other kids, split up and go to two different open houses for school. I went to the downtown school where Akila and Zeke will go and Michael went with Imani and Hezekiah to the Crystal school. I really needed to connect with Akila's teachers to let them know what's up. I had talked with her 1:1 aide on Wednesday and updated her. I also ran into the Associate Principal in the hallway and let her know. She stopped and thought for a moment and said, "so maybe I shouldn't have her with a shared aide, I should have her with a 1:1 aide." Evidently, she had been planning on having the aide shared with another student, which I know they did last year and it worked, but was not ideal. I said I think that would be a good idea to do 1:1 as I anticipate it being a rough year, with it being the first year of switching classes and all that stuff. .She said OK, she would take care of it. She also said she remembers me saying a few years ago that kids with FASD get more challenging as they get older. Wow, people actually do listen to me!!! Phew, glad I ran into her.

Then I ran over to the Crystal school as I really wanted to meet the middle kids teachers also since they are going to a new school and learn more about it. I also ran into a friend of Akila's. Doesn't that sound funny. Akila has a friend. This is a sweet girl, I will call her Ellie, who use to got to school with Akila and until 3rd grade. This is back when Akila was easier to play with and she did kind of have a few friends. Then Ellie went to the Crystal school in 4th grade and we kind of lost touch. But we connected a little bit this last year and Ellie came over once or twice in the past 6 months or so and they had Akila over for a sleep over.

Here is why I love Ellie and her family. First of all, Ellie is awesome. One of those kids that any parent would want to be friends with their kid. Sweet, smart, funny, polite. All around awesome. And she is really patient and understanding with Akila, which is extremely rare with 12 year olds. Second, Ellie's mom had a brother with FASD, and totally understands Akila and the struggles our family is facing. She knows how to deal with Akila, and she knows how to help her daughter be patient with Akila. How cool and rare is that? I know, God is good.

So I ran into Ellie and her mom and dad last night and shared with them the news. My mind was in a fog last night. We dropped Akila off at the crisis home at 4:15, open houses started at 5:00. I was talking with the mom about the therapy and stuff that we will be setting up and doing in the near future, and she shared with me how she remembers being very angry as a kid and going into her room and hitting her pillow. She said the therapy was helpful for her and some of her family. She said it made no difference for her brother, which is something I referred to in my post that I linked to up above. She said she also remembers going to bed at night scared, and wondering if he would kill her.

This was also so affirming to hear, as part of why we are doing this with Akila, a big part, is for the other 3 children. God has been faithful and bringing messages of hope and affirmation when we need them throughout the week. He has placed the right people in the right places at the right time. I know for sure that we did the right thing, but that doesn't make it easier. It still feels really yucky. It stills leaves a void and a hallow feeling.

She can stay there for a max of 45 days. She will still go to school. One thing that I am hopeful for, is that they will be looking at her meds and helping us to evaluate if she is on the right meds. We can visit her anytime, but won't til next week to give her time to get settled. She called last night and I just got off the phone with her. She once again this morning seems happy and like she is at camp or on an adventure. This is a much needed respite. We don't know what will happen next. We are focusing on one day at a time. We will meet with the staff every two weeks. They will email me updates every other day. I can call them anytime.

We do appreciate all of your support and prayers. This has been a roller coaster of a week. Of a month. Of a summer. Of a year. Of 12 years. But God has been good and we are feeling some relief.