Tuesday, January 31, 2012

And we wait

Looks like we are going to be waiting for awhile to figure out a more safe place for Akila to live. The county is not going to move very quickly, that is obvious. I called some residential treatment center's on my own. Earliest we could get a spot at one was April- just two more months of being beaten every day. Great.

If we place her on our own, our private insurance would have to pay- I haven't called them yet to see how that would work. But it would cost us $5,000 for sure to meet the deductible. And they would probably not approve her there as long as she needed to be there. I emailed our social worker on Sunday night, and was pretty honest about how it is taking every ounce of restraint I have to not smack Akila back. Wondered if they would move more quickly if I did. Wondered if I should call child protection since Akila is abusing our other kids. She did not acknowledge or respond to those questions. Shocking. Just told me it is a process and takes time. And by the way, how is Akila doing in school, she asked. So I will answer that she is doing OK in school, which makes us look like we suck. Sigh.

She is not home from dance yet with our fabulous new PCA. I can't wait. Waiting is all I am doing lately.

Monday, January 30, 2012

Hope in Him

My emotions are all over the board lately. I go from being angry a lot of the time, to just plain old sad. Only when I remind myself that He is the one in control, the one who knows the future, that is when I can get my emotions reigned in. When I stop focusing on the chaos in our lives right now, I am able to see His purpose.

People with FASD are so confusing to those of us who consider ourselves as neuro-typical- if there is such a thing. They make no sense, absolutely no sense. That is one thing that those who live with and love these kids, have to come to grip with. And that is hard to do, even when you have realized it, you have to constantly remind yourself.

People will say to me all the time, why is it that she is fine at school, and not at home?? I don't know. I have some theories, but I don't know for sure. It is not true of all kids with FASD either, which is another reason they confuse us. I have one friend with two kids on the spectrum. One rages at school, one doesn't. In many ways, she says it is easier to have the one who rages at school, because at least people get it better. They just don't think that she must be doing something wrong at home.

Almost all kids behave the worst for their parents than for others. This is a proven fact, for typical brained kids. For our kids who were prenatally effected by alcohol, it is 1,000 times that. We all "let loose" with those we are most comfortable with. For some of us, that might mean just venting, for some of us, that means yelling and shouting. All depends on our personalities and our temperament. For many kids on the spectrum, this means yelling, and sometimes raging.

Akila had some rough behavior in the fall, but this month, has been doing fine at school. Why? I have no idea. She has always had issues at dance in the past years- in class and at the performances. She is doing super this year at dance. Why? I have no idea. The puzzle pieces are fitting together even less for Akila lately. It use to be a given, that if she went to spend time with someone for an evening, or a weekend, that if she did not know that person well, she would behave really well. Not true anymore. Ten days ago she spent the night with my friend who is a special ed teacher. She was horrible.

She was rude and out of line with the OT this month. Would have never happened a year ago, or even 6 months ago. She raged in front of the therapist and beat on me in front of her. She would have never done that in the past. Why? I have no idea. One theory I have, is that she is trying so hard to "fit in", to be "normal" in front of her peers, that she holds it together pretty well (school, dance); but when she is not in front of her peers, she is letting lose. She can't hold it together any longer.

Why is she so EXTREMELY violent lately? I have no idea. Is it hormones? Is it meds? Is it the fun changes that occur in all teenage brains, and are messing her up even more because of her brain damage?

What I do know, is that when she is home, she is hardly capable of holding it together. If she were capable, don't you think that going home from the hospital after being transported by the police there, that she would be able for an evening at least, to not attack her family members? I have told her that we are looking for a different place for her to live because of her violent behavior. When she is calm, she gets upset about this. She says she is going to stop, to change. I have explained that the next place she goes, will probably be somewhere where she goes to school and won't go to her same school. That she won't be able to go to dance. She doesn't like this idea, and says she will change. Ten minutes later, she is hitting.

Watching her dance this weekend, I was sad. I did get emotional. It hit me that this might be the last time I see her dance. I am not into dancing, it is not my thing. But it is her thing, and she really loves it. It is something she can do, and seem "normal". It was an emotional weekend that is for sure. I can't tell you how much it sunk into my brain, as we were driving home from the ER after a police transport, and she started to threaten to stab me. It was another reminder for me of how truly damaged her brain is. I am sad. I have not lost hope, as I still have the Lord and I know He is with us in this journey. I am sad, but I have hope in Him.

Sunday, January 29, 2012


I don't even know how to post on today's events. Akila refused to go to church today. I told her if she didn't go that we would not go to the store to spend her token money. She still refused to go. I made the consequence very clear. We drove off for church, hoping that would motivate (scare) her into coming. We drove around the block and Michael ended up staying home with her.

Two minutes after the kids and I returned home, she was asking to go to the store. I told her she would have to wait until next Sunday, and we could do it then if she went to church. We will only go once a week to spend the money, or she wants to do it 4 times a week. Anyway, she did not like the consequence, and she got violent. Quickly. It was not pretty.

Michael called the crisis line while I dealt with her. This may sound funny, but there is a reason. I do the majority of the restraining and stuff for a reason. She is completely out of control by the time she needs to be restrained, and this is when he isn't even in the same area of the house. When he then enters the room, she goes through the roof. She escalates at the sign of him entering the room, and this is because she knows that he is the head of our household. He does come in the room, but if he does this before she is in a restraint, it is not pretty. He also has not had restraint training like I have, and is usually not in the room when the restraint needs to be started.

As I said earlier this week, we called the crisis line in our county and it didn't work that well. You first call an answering service, and it takes 15 minutes for a return call. That happened last week, and again today. When they called back, Michael told the lady he wanted her to come out. She said it would be 30-60 minutes at least. Fine. Really fine.

Meanwhile, Akila is now sobbing that she wants to go to her bedroom and calm down, which we had been suggesting forever prior to the restraint. I finally tell her I will get off of her, if she goes straight up to her room, and does not kick or hit me as I am "unrestrainng" her. This is when I am most vulnerable, is when I am getting off of her at the end of a restraint, she almost always kicks and hits me more.

Sure enough, she ran to the dining room, grabbed a heavy duty stapler to throw at me. Then tried to throw the computer printer. Then kicked and hit me. Then hit Michael in the face before I got a hold of her to put her in a hold again. As I was trying to get her into a hold, she cold cocked me pretty hard in the side of the face (cheekbone/eye area). It was a stinger, I could feel my heart beating in the area she hit.

We had had enough. We called 911 as our social worker and many others have suggested we do. Minute the police car pulled up in front of the house, she calmed down instantly. We were so blessed though that the Lord sent the right cop. He came into the house, said immediately to Akila, "don't even try to tell me that your mom and dad assaulted you cuz we're not going there". We had not said a word yet. I was impressed!!! As I am sitting on top of my little girl. Anyway, he got her to agree to not attack, which was no problem as she was instantly calmed by his presence and I knew she would not attack or do anything while he was there. That would make it too easy for us.

He told her that his 18 year old son did the same thing 6 years ago, and he was the one calling his local police to come and help. Thank you Jesus, someone who really does get it. He asked what was going on, I filled him on briefly with a crackly voice on the brink of bursting out crying. Thank you Jesus for helping me to hold off on the flood. He asked what we wanted to do. I said I would like him to transport her to the local hospital that deals with adolescent behaviors. He said OK, let's do it.

Wow, again, thank you God. I know of so many people who have had to call the police only to meet resistance. He was not condescending, but was great. Five minutes later, I was in my car and he was following me to the hospital. Yes, he followed me, and I did not like it that way. As I would zone out, I would start to speed and it was freaking me out. Haha. Do you think he would have given me a speeding ticket if I had been speeding?

Anyway, long story short, they did not admit her which is exactly what we expected. They usually will only do that if she is of harm to self or others on arrival or present that way while there. Akila was as calm, quiet and sweet as could be. They gave her apple juice, a warm blanket, and were so sweet to her. Did this bother me? Yes. Should it have? Probably not. But again, a part of me wanted her to let loose and go nuts while we were there. I wanted more witnesses. What I really wanted, was someone to actually help her. Help me. Help us.

Their suggestions were for her to:
1. Go back to the crisis home- not an option until July again
2. Give her her evening bedtime meds so she is sedated and then send us home. It was about 5:30 at this point.
3. Is there any kind of respite or somewhere else she could go?

Once I knew for sure they were not going to admit her, I just wanted to leave. Check another thing off my list that we did that the social worker is telling us to do as we wait to see if they will find an appropriate out of home placement for her. They said they would give her the meds and wait until they had kicked in before I needed to take her home. I didn't think that calling our new respite provider and having her take Akila on a school night was going to work. It would have been a lot of work to make that work, and was another stupid band-aid approach. So, I said give her the meds. What I really wanted to say, was "great idea. Give her the meds, she has never hit, punched, kicked or bitten me after she has had her evening meds."- except for every single night the last month!!!!!!!!!!!!!

Nonetheless, that is what we did. We left an hour or so later for home. I didn't say much in the car, but she did. She apologized and said she was going to try harder and that she would stop hitting us. She specifically apologized for hitting me in the face. Then, about 5 minutes from our home, she got mad as I didn't turn on a road she wanted me to. She threatened to stab me, she called me every name in the book and threatened to kill me also. Welcome home honey.

We got inside the house, things were calm for awhile, then about 1/2 hour later, exploded again. Big time. The kids were downstairs in the pool room and we were upstairs with Akila. Michael and I both went into the boys bedroom and locked the door (we have a french door on our bedroom, with a window pane that is already missing as she has kicked it out). Now, at this point, I am very thankful we live in an old house with solid doors. Cuz she gave the door a run for it's money!! She kicked and swore and hollered and bellowed and went absolutely nutty. We just stood there looking at each other in amazement. I was wondering how long til she tries to start breaking things, or comes up with some other idea. After probably 10 minutes, she started to threaten that she was going to go downstairs and attack the kids.

We listened to her start to go down the stairs, but she was bluffing. She came right back up and thought we didn't know it. She went nuts again. Eventually, we risked it and came out. A few punches later, and she was done, for the time being. The rest of the evening was up and down, and it is only by God's grace that I got her to bed. I am so thankful for Monday, it is 30 minutes away- and for once it is a 5 day school week.

I did want to say that the Dr. that we eventually saw at the hospital (a Psychiatrist), was good. He told me a few things that were exactly what I suspected. He gave me some advise. He was not at all rude to us, or judgemental for us to be there. I know other people who have been in the exact chair, I mean same physical chair I was sitting in, and have been given the run around. He acknowledged that we are playing a game, and that we just need to keep at the county and he even put in his report that Akila needs out of home placement.

It was not a fun day. By any means. But I am thankful I had the opportunity to go to church (sad Michael couldn't), to be lifted up in prayers by so many of you, and I am also glad that God was putting the right people in place today to make what we went through more bearable.

Saturday, January 28, 2012

To see or not to see

Akila did great tonight at rehearsal. I am very glad, although, sadly, there is always a tiny, very tiny, part of me that wants others to see the stuff I blog about and share about. I know sometimes people think I must be stretching the truth, or even doing something wrong, when she behaves so well in public.

We were there from just after 4:00 pm until 10:00 pm. She was back stage the majority of the time, and according to the back stage moms, her behavior was good. She danced nicely, and was where she was suppose to be at the right time. At the ticket table, I was talking with some dance moms, who are aware of Akila's issues, and even read the blog from time to time. They laughed with me about how every time they see her, she is so nice and polite.

I am truly grateful that the majority of the world does not get to see, or have to see, her challenging side. But there is that ever so tiny part of me that wants people to be able to see it. Like I blogged about the therapist witnessing her issues just over a week ago. Yet, when people do get to see it, it is embarrassing and frustrating. I guess a good number of people have seen some of her edginess. I am guessing they will tomorrow. But what they see, is her coming up to me at the ticket table where I am working and being a demanding snot who will get quite mad if I don't give her what she needs. That is about the most they usually see. Unless they want her for a weekend. Then they would see more. Anyone game? :)

Friday, January 27, 2012


Akila will perform in two dance productions tomorrow. Tonight, she has dress rehearsal. She loves to dance. I work part-time at the studio, and will be working all night tonight, and all day and night tomorrow. I am praying that it goes well. She has been behaving really well at dance this year, unlike past years. Strange, when the home front has been so rough, but things never make sense with children prenatally effected by alcohol.

I am hoping to make it through the next two days (she loves to seek me out and act horribly during these events), and I am thankful that Michael and the other 3 kids will have a break from the madness.

Thursday, January 26, 2012

Really hard

Some days are harder than others, some weeks are harder than others, some months are harder than others, some years are harder than others, etc. January is coming to an end, and it has been a hard month. A really hard month.

I have been reflective this past week, on the challenges God has blessed us with. Sometimes it is hard to see through the forest, and to see the challenges as a blessing. Really hard. But when I sit back, spend some time in his word, I am able to see the blessings. I don't see them all, yet. I know that He has some more to reveal to me that I am not yet ready for.

I know that sometimes I may seem whiney or negative on my blog- but that is mostly due to my commitment to be honest and open about our life living with a FASD. And during all of the challenges, which are in the 100's every day lately, I need to keep reminding myself that Akila did not ask for this, nor deserve this. When I start to get overwhelmed, and feeling really bad for myself for all that I have to put up with, I try to step back and feel what it would be like to be her. Sometimes, this is hard. Really hard.

I think of what my body physically feels like when I am angry. Honestly, this has happened very few times in my life. Where I am truly angry, yelling, and agitated. As a matter of fact, as an adult, I can't remember every feeling as angry as Akila is on a daily basis. I am a very laid back and calm person. But when I am angry or stressed, my body does not respond well. I get lower back pain, headaches and just feel yucky overall. When Akila is home, lately, she is angry at least 50% of the time, and I think it might be higher than that.

This morning, right before the bus came, Akila asked if I could drive her to school. She did not ask nicely either. I was in the last few minutes of my countdown to when she would leave. Not a good feeling, but it is where we are at in life right now. I told her I couldn't. She got mad and demanded to know why. I told her because I needed to shower and get to a meeting. She pushed me and yelled, "you should have told me that!!" I wanted to say, "I just did!!", but I did not respond.

Right before that, she wanted some gum. The OT says that anytime she can chew gum, is a good thing and the bigger the better. Double Bubble, Bubble Yum, that kind of gum. So I let her have some each morning to bring to school. I was out of the certain flavor that she was craving today, and she went crazy yelling at me about this. Smacked me a few times and pushed me as well. Then, when the bus finally came, she told me to eff off as she went out the door. I bit my tongue as I had several things that I wanted to respond with. I just closed the door, breathed a sigh of relief and sat down to reflect.

Her life is not easy. She has not one friend. I think she tries so hard the entire school day, to be "normal", to fit in, to abide by the rules, that all the rest of her time, she is a total mess. That is not to say, that on days when there is no school, she is great during the daytime. Normally, the daytime is her best time, thanks to some help from meds. But lately, when she is at home, even during the day, she is horrible. She wants so hard to look "normal", yet she doesn't all the time. She has a hard time caring for her hair, and also allowing me to help with her hair. She wants me to do it, but won't let me help care for it each day. A few weeks ago, she came home from somewhere with a sample of fingernails that were glued on to a nail file. I think she stole them from a respite provider who does nails. She used her nail glue, and applied them to her nails. They were the long, skanky looking kind (sorry for the judgement, but that's my opinion). Each one was a different color, and had a number on them. Tell me that didn't look totally goofy. Imagine, being in the position of telling your daughter to take off those nails which are glued to hers. What would you have done? I let it go. Least of my concerns lately. Do I sound defeated? A little. I am picking my battles more carefully than ever.

This is my daughter who eats alone at lunch. They have tried to have other kids sit with her, sometimes she has lunch mates. Most often not I think. And Akila is actually fine with this, it doesn't seem to bother her too much. It breaks my heart. It is a reminder of how hard her life is.

I think of her future, and how hard it is going to be, and I don't mean for me. For her. It is going to be hard. Really hard. As parents, we try so hard to make life "easy" for our kids. We don't want them to make some of the mistakes we made, so we try to teach them the "right way" to do things. When I was newer to this parenting thing, and more naive perhaps, I use to pray that things would go smoothly for my kids, and that they are able to enjoy the Lord's plans for them. But the truth is, that we don't know what He has planned for them. I would never have guessed in a million years when I was 10, 17 or 27 that He had this life planned for me. I know He has a reason for choosing this life for me, many reasons actually.

Now, I pray that he equips each of them for the easy and the hard. The really hard. I pray more often for Him to give them (and me) grace as we swim through the tumultuous waters, rough waters yet to be revealed (I know it is going to get more challenging with Akila, not easier). I pray for the Lord to give me the wisdom to teach and guide them through this current situation, which is taking a tole on all four of our kids. I pray that He uses this to make all of us stronger in our faith, and as a reminder of our need to rely solely on Him. When I start to think about how hard this is for Akila, or for me, I think of how hard it must have been for Him to sacrifice His only son. To watch him die on the cross. It must have been hard. Really hard.

Wednesday, January 25, 2012

Disaster preparedness

My friend Kari wrote a blog post a few days ago titled, "I look ahead and I cringe". She talked about the future and how scary it can be for our children with FASD and the people who love them. She had received a phone call from a mom of a son with FASD (around age 20), who committed suicide. A fear that many of us have.

Last night, I received a phone call from a mom of a 18 year old daughter who has FAS. Her daughter has been in a crisis home for 9 months waiting for a group home spot to open up. This mom received a phone call last night that her daughter was found with a young man, both of them with all their clothes off, having sex. Her daughter has an IQ of 56. She is devastated. The young man is a client also. Her daughter was being brought to the hospital for tests and stuff like that. This mom was on her way to a program with one of her younger children so she did not go. The staff's response were not all that concerned about the situation, the daughter is after all, an adult.

This is such a hard situation, and one I easily know we could be facing in the future. Even knowing that things like this are more than likely in our future, does not mean that each bump in the road does not break your heart. As I said yesterday, we have known for years that Akila probably will not be able to always live in our home. We know that we are at the point now where she needs an outside placement. Doesn't mean it doesn't hurt. Big. Time.

But it does help to be prepared. If we hadn't prepared ourselves for this, we would not only be dealing with pain, but shock and surprise as well- which only makes the pain more deep and painful. I have always said that I would rather be wrong on the things I know might happen in our future, than be taken by surprise and knocked off of my rocker when my head is turned. If I hadn't known this was in our future, I wouldn't have applied for MA and DD case management, and would have very few options for help now.

Often, when you work with a therapist or counselor, they put together a crisis plan. You are "preparing for disaster". This usually consists of how to keep family members safe when a rage occurs. Another aspect of disaster preparedness, is setting up the support system that you need to be as successful as possible with your child (all your children). For us, this included applying for MA through TEFRA, applying to the county for DD (Developmentally Disabled) Case Management, doing the counseling, the OT, the respite, etc. Many of us never went into parenting thinking these would be things we would be preparing for, or services that we would use. But they are vital to the success and safety of our children.

I thank the Lord for helping to open our eyes over the past several years so we are prepared for as much as possible. Many people prepare for disasters, but never need to put their plans into effect. Well, as I said, that would be awesome! But be prepared. I am by no mean saying that the mom who called me yesterday was not prepared. I think in many ways she was. Today, my heart is breaking for her and her daughter.

Tuesday, January 24, 2012


There is no doubt we are living in an atmosphere of abuse. When you watch a movie where a woman has a husband who abuses her, and possibly the children, they often show how much they dread it when the abuser comes home from work or somewhere else. They also show the relief when the abuser leaves. That is our life right now.

Yesterday was day 26 in a row of serious aggression. Never has it lasted this long in the past. All she does the entire time she is home is cycle up and down. And when she is up, she is physical and totally out of control. I have been talking with our social worker, but as many of you know, counties move slowly. It seems like the more desperate you are, the slower they are.

Last night, after she had calmed down from her 2nd rage of the evening (and she did not get home until 7:30- she was at dance with a PCA), I was helping her to get something. I can't remember why, but I said thank you to her. I got yelled at and was told not to say thank you to her.

Another scene which was classic to a movie, was when her new PCA brought her home from dance. She was in a good mood, really positive and nice. She was hungry but wanted to wait until the PCA left before she ate. I started to warm up her dinner before the PCA had left and she told me to wait as she hadn't left yet. I waited and once the PCA left, she turned nasty. Extremely nasty. Similar to in the movies when a friend, or even the police arrive, and the abuser turns on their sweetness, and as soon as they leave, they let go.

I know that I am very open and honest in my blog. Some people criticize me for that. I get that. There might be a time when I need to go private, or have fake names. The time is not here now. Right now, I can't tell you how many emails and comments I get from people who appreciate my honesty and are living similar lives and are relieved to know they are not alone.

We have known for years that Akila might not be able to always live in our home. We have been trying to prepare ourselves and the other kids, and even Akila for that for years. We know we are at that point. But unfortunately, we are having to play the waiting game with the county. They have procedures and funding limits. Those things are incredibly hard to understand when you are desperate, which we are now.

Akila is with a PCA this week Mon-Wed in the evenings and we have them working with her out of our house. Thursday and Friday evening, she has dance rehearsals and all day Saturday, she has dance performances. Sunday afternoon and evening is a time we need to fill. It does not work to be in our home for more than an hour or so with her. Last Sunday was a nightmare. The day of rest. There is no rest for the weary, that is for sure. We do appreciate all of your concern, and especially your prayers.

Monday, January 23, 2012

The battle continues...

A friend of mine who has been a special ed teacher for 22 years and is excellent, took Akila overnight on Friday. I am so blessed to have friends and people in our life who are willing to help out in different ways. I picked Akila up around lunchtime and had to bring her to the dance studio for Winter Show rehearsal which was from 1:30-5:30.

After dance, she and I went to Target to spend some of her token money. We didn't get home until probably 7:30 from that. The day was almost over, phew. Made it through another one. We are living in the moment, hour to hour, trying to get by without a rage. Every hour without a few rages, is a huge success.

Yesterday, we went to church, came home and ate. Michael was going to bring the boys to buy some weights for their cars they are making for the Grand Prix race at Awana's, and Imani went with them all. It was just Akila and I. Typically, in the past, this would work out great. Not yesterday. She wanted to invite a friend over to play with. Couple of problems with this. One, she has no real friends. Our neighbor girl will come sometimes, but last time she was here, on Jan. 1st, Akila was horrible and it was a nightmare. She cannot handle having a friend over. The other friend she has, is a sweet girl who's mom had a sibling with FASD. She is great with Akila, but I know last minute things don't work for her family. But the main problem, is that with her behavior lately, we can't bring an outsider into this chaos.

I offered to play with her. I have stated before how much I dislike playing with Barbies and dolls. But lately, with how out of control she has been, it is an absolutely horrible option for me. I am too frustrated with her to sit and play. But I will. I am can bite the bullet and do it. I offered to color with her, or do any number of other things. I asked her to bake something with me. Nothing would work, to de-escalate where she was heading. Strike that. If I agreed to having a friend over, and let her have her way, she would have turned into an immediate angel. I did not.

Eventually, she escalated to violence. Several warnings, several attempts at calming techniques (yes, I was using the calming techniques on myself yesterday. Somebody needs to use them!). I finally had to restrain her. Michael and the kids were gone for 2 hours, and she cycled up and down the whole time. She finally close to an hour got off the friend idea. Then she wanted me to go into the basement and find a new toy for her. She thinks the basement has a magical stash of things. I said no, that she had gotten a new Barbie this week, and we could play with it. She raged. Then she wanted to go to the dollar store. She had $1 left from Target the night before. I said no, we only spend the token money once a week. She raged more.

They all arrived home, and Akila raged more. I finally got her to settle down and color with me. We were in the dining room doing this for awhile. She also played with her Nintendo DSI for awhile. Imani has been playing Barbies each evening the last 1/2 hour before bedtime. We finally got to that time, and I was relieved. For a little. Imani ended up losing her patience with Akila and quit early. Akila did not like this at all. She blew up. Big. Time.

Michael and I were both trying to help her to calm down. He got hit in the face and his glasses were bent. I had to restrain her finally. She was really out of it. We finally decided to call the county crisis line, which I had thought of doing all day. I forgot it was an answering service and you wait for a call back. As I was restraining her, she started to freak out about them coming. She said if I got off her she would go to her room, which we had calmly been asking her to do the entire time. I got off of her and she started to hit and kick more. I restrained her again. She is really strong by the way. I was literally sweating by the time it was over.

After another 5 minutes, she said she would go to her room. I got off of her and she went, after she threw her shoe at me. I had to restrain myself from going after her. For real. She went to her room, and cursed and yelled from her room for awhile. I asked Michael if he would go check in with the kids, especially Imani. I was worried that she would blame herself since Akila raged when she quit playing and wanted us to make Imani keep playing with her. I started doing dishes waiting for the crisis team to call.

The phone rang, the lady asked me what was going on. I couldn't talk. Started crying. It was great. Finally told her. She asked if we have a therapist and psychiatrist for Akila. I said yes. She asked if the therapist has given us ideas of what Akila should do when she is upset. I almost threw the phone across the room. I restrained myself. I know this is an OK question. But I am sick of people asking if we know how to calm a neuro-typical kid. I read the list to her and told her how the therapist was over on Thursday and watched Akila hitting and kicking me and said there was nothing else she could think of that I could try.

She asked about med changes. I cried more. I told her that we changed a med on Thursday, but that is not the reason for this behavior. I told her it has been going on daily since Dec. 29th and that the med had not changed her behavior. She asked if Akila would talk to her. I said I would see. I brought the phone up to her room. She wouldn't open the door because she thought they were here and were going to take her. I finally talked her into talking to them.

I could hear the conversation, and it is hard to remain quiet. She asked Akila if she had thrown anything and Akila said yes, then no, then said that I grabbed from her what she was going to throw. There were a bunch of Akila's answers that were inaccurate, very inaccurate. Before I had went to bring her the phone, Akila had stopped yelling and swearing and was kind of quiet. When she was done with Akila, I got the phone back. The lady thinks that she settled Akila down. I tried not to laugh in the phone. Akila had told her that she likes to knit when she is upset so they made a deal that Akila would knit. HAHA. Akila does knit sometimes, but not when she is upset. As a matter of fact, I make sure the weapons- AKA knitting needles- are not in sight when she is upset.

We got off the phone, and she did not want to knit. I got her a bedtime snack and then tried to get her to bed. Around 10:30, she was still awake and I realized she had her DSI in bed which she knows is not allowed (she rarely plays with her DSI). I asked her to give it to me and she would not. I gave up. I was not about to have a power struggle with her about this. I was pooped. I came down to type an email to our social worker and then I went to bed around 11. She yelled down for me to get her some food. I said no. I went to bed. She came in my room and wanted some more sleep meds. I brought some to her. But she refused to take them with water, she wanted juice. I was done. I set them down, and went to bed.

I heard her go into the kitchen, get some more food to eat, and then go back to bed. I have spent the day emailing and calling our social worker and doctors. Trying to get some balls rolling more quickly. Things need to change. Soon.

Saturday, January 21, 2012


When the therapist was here on Thursday night and all Akila did was cycle up and down for two hours (actually, she did this for over 5 hours, from the minute she got home from school until the minute she went to bed), we had a typical "Akila moment".

During one of her semi-down moments, she wanted me to tell the therapist about Y'sly. I asked what Y'sly was. She said, "you know, Y'sly!" I said I couldn't remember Y'sly, and needed her to remind me. She just kept on saying, you know, and getting more agitated. This "Akila moment" happens usually once a day, sometimes more. She will not just tell you what she is talking about, she will just keep saying you know, and getting more mad.

I was standing there and trying my hardest to figure out what she was talking about. All I could hear in my head was Y'sly, and it didn't sound like a word to me. The therapist was trying to prod her for info to help me out, and she just got more mad. Finally, I figured out what she was saying. She was saying wisely, but the word alone with no context meant nothing to me, and by this time, after several hours of cycling up and down with her, my brain was mud.

Here is what she was referring to. Her class was going to a program called Financial Park, run by Junior Achievement. In the younger grades, it is called Biztown. The kids go and spend fake money, write fake checks. They all have a different role in the business. Akila has been telling us all week that she was going to be an Architect and make $98,000/year. She also told me she was going to bring $98,000 in real money home on Friday. I told her I didn't think it was real money earlier in the week and she got very mad at me and called me stupid. I said ok, that will be great if it is real money and left it at that.

When I saw the school staff on Thursday, I asked them to make sure that she understood that it is not real money. One day this week, she told me it would be a check for real money, so I was anticipating her coming home with a fake check and freaking out that we should go to the bank and cash it. She did come home from school yesterday and tell me right away that it is not real money. I acted surprised and sad.

Back to the "Akila moment". In the profile of the Architect, it said she was 43 years old, had an 8 and 5 year old, drove a Chyrsler Town and Country minivan. It listed her bi-weekly pay check amount (one I would die for), and it stated that she had invested her money "wisely" and it listed her stocks and investments. This was the "Y'sly" or "wisely" I was suppose to be telling the therapist about. Wow, the way her brain works is amazing. She thought that I would remember that tiny detail and that it was important to tell the therapist. And I got plenty of attitude when I finally figured it out. Was called stupid and got the snotty eye roll. That doesn't bother me at all, it is the least of our concerns.

Akila stayed over at my friend Lynne's last night. She called Thursday night asking how she could help and offered to take her for a night. I of course don't say no, ever really. :) Lynne is a special ed teacher so I think this will be a good learning experience for her, not to mention that she is well equipped to deal with the sweet thing. Lynne called me last night and had some excellent observations. We are so blessed to have people in our lives who are willing to help out and are willing to put up with a lot (I was just on the phone with Akila and she was giving Lynne a run for her money!). I have chosen my friends "wisely".

Friday, January 20, 2012

A witness...

Last night Akila's therapist was scheduled to come from6-8 and work with her. She meets with her once a week in school, and has now started to come to the house once a week also. A few weeks ago over winter break when she came, she brought Akila to the library. Last night Akila asked her to take her to the library and the therapist said they weren't going to do that tonight, and that was something she could earn with good behavior and practicing her calming skills.

Oops. That didn't go over too well. She said no to Akila. Akila no likey. Akila went nuts. She came into the kitchen where I was and started to complain that the therapist wouldn't take her to the library. I of course backed up the therapist which angered her even more. Then Akila thought I should take her to the library. I said it wouldn't work tonight, but that we could do it the next day after school if she made good choices tonight. Akila no like once again. The therapist had also came into the kitchen with Akila. Therapist and I tried to de-escalate a girl who was escalating quickly. Akila no likey.

She started to get very angry, verbally abusive and started to push me. The therapist tried to distract her, and was met with some very verbally aggressive language, name calling, etc. Therapist took the cue and stopped talking. I pointed to the calming techniques on the wall (the post-it notes), and asked Akila which one she would like to do. She kicked me. I asked her if she thought it would be a good time to go to her room and take a break (I am not suppose to tell her to, as telling her what to do is a trigger...). She stomped on my food with a bunch more verbal slams.

I stayed very calm, as I have been praying for the ability to stay calm when she is acting like this. Last summer, by the end of the summer, I had not much calm left in me and I was losing it quickly, had a very short fuse. Since she has returned home, the Lord has been gracious and given me lots of patience and the ability to remain calm. I am very thankful. I tried several things to distract her with, to no avail. The therapist would try once in awhile, to no avail. After about 15 minutes or so of this, the therapist told Akila she was going to the living room and would wait for Akila to be ready.

Oh before that, she moved from perseverating on the library, to the dollar store. She wanted to go and spend her token money she has earned. I also told her that we could possibly do that the next day, if she could calm down and participate with the therapist. Eventually, she went out and played a game of Uno with her. Then she came right back to me and perseverated on going somewhere. Michael was working late and she even called him to see if he would take her somewhere. He said he would be at work too late.

At one point, she switched her obsession from going somewhere, to finding a charge cord for an old cell phone that she has. We don't have a cord for the phone that fits it. She has at least 5 old cell phones, and cords for most of them. But not for this one. She then went nutty about that. She eventually went to the basement to look for a cord. She was convinced that my mom had the same cell phone and that we have the cord. My mom passed away 7 years ago next month, and I never had her old cell phone. But she wouldn't listen to reason.

I was glad for the break, so the therapist and I could talk. I really like this therapist, but she told us upfront that she wasn't sure what she would be able to do to truly help Akila. I like her honesty, and not putting up a pretense that she can fix Akila, like so many other professionals do. I told her, that what she was seeing was mild, that Akila was actually holding back a bit for her, and that she usually gets even more extreme than she was seeing. She was thinking that already. I told her that I was glad she was staying and witnessing the behaviors as she asked if I was OK with that. I asked if she wouldn't mind documenting what she was witnessing and sending it to our social worker. She agreed to that with no problem.

Akila has been "pissy" with her on more than one occasion. She has seen Akila's edge and attitude, but we have never really had a witness to the behaviors that were observed last night. I wasn't even really stressed during the whole two hours of ups and downs. I just kept thanking the Lord for having a witness.

When the therapist and I had some alone time, we were talking about how sad it is for Akila that she is just so stuck in this anger mode, and can't enjoy the life that she has. The therapist said that she loves to come to our house as it feels so good and positive, and that she is sad that Akila can't enjoy that. That was nice to hear, because no matter what, you sometimes wonder what people from the outside are thinking looking in.

The last 1/2 hour she was there, she got to see Akila move on to perseverating about playing with Imani. Imani said she would play with Akila at 8:30 (Imani has been playing with Akila the last 1/2 hour every evening to help us- she is fabulous!). Akila no likey. She went nuts again. She kept on very rudely telling therapist to leave and several other nasty things.

On another side note, here is a funny story. Between 3:30-6, before therapist arrived, we had several issues also. Akila went after Zeke and was trying to attack him. I got in between them, got her out of the room, and tried to distract her. She hit, kicked and pushed me several times during this. I grabbed her arm one time when it was swinging at me and she went nuts because I touched her. I pointed out that I was only blocking her from hitting me again. She got really mad and said she didn't hit me. I said you just hit me 3 times in a row. She honestly didn't think she hit me and went nuts. Then she said, with a ton of attitude, "I didn't hit you MOM, this is called punching" as she showed me how she punched me. Gotta love that concrete literal thinking brain of an FASD kid, doncha now?????

Thursday, January 19, 2012

Legal Aspects of FASD training

I attended the Legal Aspects of FASD training yesterday. It was put on by my friend Jerrod Brown's organization, The American Institute for the Advancement of Forensic Studies. It is a new org that is up and coming! I will be doing a training for them in May on FASD and impulsivity, more info to come.

The trainer was retired Judge Tony Wartnik from Washington state. I was fortunate to spend time with him at a meeting on Tuesday as well. He is an amazing man, who truly understands FASD, a rarity with people in general, especially people of his age group, and especially of judges.

One thing that he made abundantly clear, was the importance of diagnosis. We know that research shows that 60% of people on the Fetal Alcohol Spectrum will get into some trouble with the law. I will not bury my head in the sand, there is a good possibility that Akila will some day. It sounds like there are some judges and lawyers, who are starting to have a basic understanding of FASD. This judge talked about how incarcerating young people with FASD, backfires big time as they come out worse than when they went in. This is true of many people, but especially true of people with FASD.

He also talked about how our kids are almost always involved in committing crimes in groups, and how they are not the leaders of the pack so to say. If it is a shoplifting, or a car theft, they are often alone, but the rest of the types of crimes, they are usually following the lead of more sophisticated kids. He was able to site a good number of cases that involved FASD kids and their families who have been paving the way.

I know someone else who recommends that families like mine, save money each month to keep in a legal fund for the kids in case of future problems. I have another friend who has spent thousands on legal fees in a fight with their county, a ridiculous fight that should have never happened. It could easily happen to us.

Judge Wartnik was very knowledgeable, and very compassionate. He is willing to have us email him with questions if we ever find ourselves in a sticky legal situation and need some advise. He actually is the Legal Director of an org called FASexperts. They have a doc, legal expert, neuropsychologist and psychologist who can be hired to testify in trials.

He talked about the challenge of courts looking at the IQ for mental retardation status, and how the overall IQ is not a good way to look at people with FASD. It is vital that the AQ, Adaptive Quotient is also looked at. AQ measures ones ability to function day to day without support in the areas of communication, socialization, daily living, time management, employment, etc. A person with a low AQ rating might have difficulty with impulsivity, inability to plan or follow directions, and an inability to say no. They often get in trouble with the law. This low AQ can be considered an adaptive mental disability and can result in significant problems managing daily living skills.

He had a case study of a girl, that sounded just like Akila, check this out:
  • Bulgarian, adopted at age 2, IQ 80+, prenatal exposure unknown
  • 2002-2007 (age 17) 17 assaults, weapons, cruelty to animals and 5 malicious mischief offenses.
  • Severe, rage/tantrums, highly impulsive, threatening and aggressive, destroys property, noted weakness in social judgment/knowledge of conventional standards of behavior
  • severe physical/emotional neglect at Bulgarian orphanage
  • Declared at-risk youth (age 12), continually in and out of detention and group home facilities (inability to follow court orders/ruled of group homes)Akila is 12 now, and possibly looking at out of home placement
  • School performance at 2nd and 3rd grade levels in reading, spelling and math
  • FAE is suspected (this is the former term for ARND, which is what Akila has on the Fetal Alcohol Spectrum)
  • Diagnosed at age 5 with ADHD, RAD, PTSD, Mood Disorder NOS, Intermittent Explosive Disorder, Learning Disorder in Math, estrangement from adoptive parents and relational difficulties with peers.-Akila would have been diagnosed with all of these if she were not diagnosed with FASD, which encompasses them all practically!
  • Hyperactive, hypervigilent and needing to be in control prior to age 5
  • Tried 13 different prescribed meds for her conditions with little or no benefit.-as of today, we are trying number 12
She also does not fit the 2nd bullet, but she could by age 17, and especially if she were not diagnosed and if we as her parents did not understand what we are dealing with. I am so thankful that we did learn when she was 6 that she has a FASD.

There is so much peace in naming something. It helps to know how to deal with it, and it takes some of the burden off of your shoulder as a parent. To all my friends out there, if you are suspecting FASD, please seek out a diagnosis. I probably am averaging getting a new email from one of my awesome blog readers every two weeks asking questions. Know that you are all welcome to do that anytime. I know that it was of great help to me in the beginning (and now) to be able to ask questions of someone who was farther along the journey than I was (and am). I don't always get back to you immediately, but I will at some point.

And for any of you newbies, I strongly recommend that one of your starting points should be the Damaged Angels book by Bonnie Buxton. It is linked to the right, and if you buy it through the link (or anything from Amazon through the top link), I will get a tiny kickback and I greatly appreciate it. I do recommend buying it as opposed to getting it from the library, you will refer back to it again and again. And if you're like me, you will buy more and hand them out like candy to your OB/GYN, Pediatrician, neighbors (right Kathy!), friends, relatives, OT's, etc.

Wednesday, January 18, 2012


We are in a tough place right now. We are working on things behind the scenes, but everything takes time. And time is a hard thing right now, as Akila is on fire all the time when she is home. We have one PCA and she has cut her hours to one day a week. Looking for some new ones, but it takes time.

Last night, Akila had some time on the computer earlier in the evening. She then wanted more and I reminded her that she had used her time already and that I would help her find something else to do. She escalated. Immediately. She went straight to hitting, punching and kicking. Immediately. I was sitting in a chair in the living room, and she came right up to me and started kicking and got right in my face, which was hard to do as I was sitting.

I remained very calm. I reminded her of some ideas to calm down, take a break. I stopped talking, and stared at a spot on the wall, while she sat and rambled on in a very angry voice about how I am ruining her life. She attempted to hit me in the face a few times. Sometimes when she does this, she tries to get as close as she can without hitting you, just to tease you and make you flinch. I am pretty good at not flinching much, but a few times this is when she has hit me. It is such a fun game.

Super Nanny says not to communicate or talk with a child who is acting like this, as they are wanting the fight. With Akila, it infuriates her when you don't talk and she gets even more angry. I eventually got up during this fun situation and told her I was going into a different room to take a break. She followed me hitting me in the back and kicking me. I warned her that I was going to have to restrain her if she kept on hurting me.

During this fun situation, which lasted for sure 53 minutes (that is when I started to time it), the other 3 kids came in and out of the area asking homework questions and other things. It is so strange that this seems "normal" to them. Michael came home during the fun and was super awesome. He was very calm as was I, and he kept on trying to distract her. He was wanting her to try a mint and stayed calm while she was being rude.

Eventually, I had to restrain her as she would not stop attacking. Michael came in and helped me to restrain her, which escalates her even more. When we were done restraining her, she sat on the floor trying to calm down. After a little while, we were talking to her about her behavior. She told us that we need to restrain her as it helps her to calm down. But I think she heard us saying that is why we tried OT. Several people had wondered if she raged so she could get restrained as a sensory outlet. The OT we saw did not think so, nor do I. But now she thinks that cuz she heard others say it. Great.

At bedtime last night, she threw a headband on the floor in anger and then rudely commanded me to pick it up. I nicely told her it could stay on the floor or she could pick it up. She got very mad, and pushy, and kept on commanding me to pick it up. Now, I just hate this situation more than you can understand. I really just want to pick up the blasted headband so she will go to bed and not get all agitated which is going to mean a minimum of 30 more minutes before I'm done messing around with her, but more like 60 minutes. Everything in me wanted to pick it up and get her to bed. But I didn't. We went a couple of rounds and eventually, she went to bed with the headband on the floor. It was 43 minutes later. I have been getting into timing our escapades.

Tonight was a decent night. I was only kicked once, pushed 4 times and hit three times. You know life is interesting when that is a good night.

Tuesday, January 17, 2012

Fun with wallpaper (NOT!)

I had the kids randomly start peeling wallpaper in my kitchen awhile ago. Well, to be more specific, at least 7 years ago as my mom was alive when they started. It has never been finished. At one point, we were forced to re-do our upstairs bathroom due to mold issues and that took some time. Then I had to work on wallpaper in Akila's room, and that took me a few years. Have I mentioned that I hate wallpaper? With a passion. I think it has a certain level of evil in it as a matter of fact.

When we bought our house 9 years ago, every inch of the house except one bedroom was wallpapered. It still mostly is. I have peeled wallpaper from two bedrooms, and one bathroom. And am now trying to finally finish the kitchen. The kitchen had 4 different wallpapers in it alone. It was very busy. And underneath the busy maroon based wallpaper, are some very BRIGHT orange/peach color, and some walls which are in very bad shape. Every time I peel wallpaper from a room, I am reminded of why the previous owners (who are really cool) probably put wallpaper up- the walls are in rough shape. We stink at patching walls also, so hopefully it looks OK in the long run.

Akila was gone in respite all weekend, it was a nice break. That is why she is not pictured above helping (although she may not have helped even if she was home, would depend on her mood- which has consistently been horrible lately).


I am an abstract random kind of gal, but in many areas of my life I am organized- doesn't make sense, I know. I am almost always on time, and I am very organized with my schedule. Paperwork, I am up and down with. I am amazed at my friends with large families and how they keep track of the paperwork. This is the stack of paperwork that has accumulated Akila since Sept. 1st., and it is just for Akila.

Many people who have kids with special needs keep their info in a binder, I filled several binders many years ago and gave up on that route. Now I just organize it by type (school, medical, OT, crisis home, county, MA, etc.) and stick it in a folder. But I let it stack up before I do that, and I need to just do it as I go. Stacks of paper start to stress me out. Between Akila, the trainings I have been doing, my part-time dance job, the other 3 kids, the committees I am on at Children's Hospital, finances and a billion other things, the paperwork has over taken my dining room and I need to devote some time to organizing.

I will do that, someday.

Friday, January 13, 2012

Angered so easily

My title is not talking about me. I have to admit that I am a very patient mom. I am generally not a patient person, but the Lord has taught me much in the area of patience being the mother of Akila. I am talking about Akila being easily angered.

Here are a few examples. Last night, she had a school concert. I went by myself as Michael had to work late and it did not sound like fun to the other kids- they are pretty burnt out right now, we all are. After the concert, Akila was walking through the theatre in front of all her middle school classmates holding my hand. I didn't think of it at first, I am so use to her grabbing my hand. We were walking through the lobby and were close to the door. Very few people were around and I said, "do you want to put your mittens on? It is cold outside." She had taken my mittens to school yesterday with my permission and was excited about them. This girl, who 10 seconds ago was holding my hand with the sweetest smile, gave me the look of satan, got very mad, and elbowed me in the ribs. She would have done more if there were not people around.

Tonight, she went to a respite provider for the weekend. Thank God, praise Jesus. We need a break. I had already helped her pack her clothing bag, and we went upstairs to put a doll bag with Barbies and dolls. When we got to her room, I asked her if she would like to take Jonathon with. Jonathon is her new doll, a boy doll, that she got for Christmas and has been playing with the most. She went nuts. Started hitting, kicking and pushing me. I asked what the problem was, and all she could say was "you". I asked her to tell me why she was angry, but she was not able to.

These two examples, happen at least 10 times a day lately. Out of the blue often. Things are going fine, and boom, she is mad over the piddliest thing. Sometimes, she gets mad because I said something like "yes mam", or call her something like "honey" which I have done forever. Sometimes, it sends her through the roof and I get a tongue lashing for being the stupidest mom ever. Often, her anger is over something that she asked me to do. That really throws me for a loop. She will do something like ask me to turn the light on, I will turn it on, and then she will yell at me. I then ask her to repeat her request, she will, and I will say isn't this what you meant? Didn't you just ask me to turn the light on? She will say yes. I will ask then why she is mad. She has no real answer, just gets more agitated and yells more, and escalates.

If you would have told me 10 years ago that I would have a child behaving like Akila, I would have told you that I would have no patience for it and that I would anger easily if a child was saying and doing some of the things she does and says to me. I am not saying I don't lose it, because boy do I ever sometimes. But for the most part, I remain fairly calm, at least for the first hour or two. That is why weekends and non-school days are rough. That is why I love Mondays and am not a big fan of non-school days. Well I am not at all a fan of them to tell you the truth. This is a 3 day weekend, and I am so thankful that she is in respite until Sunday at 1:00. The other 3 kids all have a friend sleeping over tonight, and tomorrow, we will relax.

Short shorts

This morning, Akila asked me where her shorts are. I asked which shorts she is talking about. She yelled very angrily, "MY SHORTS!!" I asked which pair she meant. She keep repeating MY SHORTS. I said that the shorts were put away for winter. She then got more angry as she was talking about a certain pair of shorts.

I then remembered that when she was at the crisis home, she had earned some money and went shopping at Target and got some disgustingly short shorts. We have a length of shorts rule at our house, and the disgusting booty short shorts that are in do not fit the rule. I have worked hard to avoid them, and I know that someday it will be a battle I probably just give into, as it would not be worth being hit and punched over.

But that day is not here yet. I put those shorts a few weeks ago in the donation bucket. I had to tell her that as she was perseverating on the shorts. She was not pleased. Not pleased. At all. I took several punches to the gut and a few pushes before I got her moved on and refocused on getting dressed for school. I didn't even engage in the conversation with her we have had a million times about weather appropriate clothing. Shorts in January? Not a great idea, even with the mild winter we have had so far. I also didn't even bring up that those shorts would not meet the school dress code. I tried to avoid the "battle" conversations.

She is going to respite tonight until early Sunday afternoon, and I am relieved for a break. We are in desperate need of a new PCA and the next week is going to be a tough one as I only have a PCA one day. I sent an email to a friend of a friend this morning who is a nurse and willing to help us recruit. It is hard to recruit PCA's, especially if they know anything about our life. Would you want to work 1:1 with Akila after everything you have read? I had to explain to this person, that Akila will not be violent with the PCA's, she saves that pleasure for her parents and siblings. She will be sassy, and not listen, but she won't hit or hurt them.

So if you know anyone in the Twin Cities area available around 3:30 in the afternoon, let me know. We are desperate!

Sunday, January 8, 2012

Twilight Zone

Michael has been talking about remembering an episode of the Twilight Zone where a child ruled a small town. He found it on Netflix and we watched it. The parallels to our life are strewn all over in this 24 minute episode. It is episode 73 in case you're interested, it is on Netflix (Season 3).

It is obviously more extreme than our life. The whole world except a small town has been wiped out, disappeared. And in this small town, a little boy named Anthony runs the place. He can read minds, and when he doesn't get what he wants, there is a price to pay (somehow he makes people disappear and go into a corn field forever, I think like statues or something). Obviously, Akila doesn't have these kind of issues, but they way that people act around this boy is what hit home with us.

Everybody walked around on egg shells around this boy. He doesn't like loud noises, so they were super paranoid of making noise. Everybody has to be happy around him and think happy thoughts so he doesn't get mad. One lady said it was "terribly hot" day outside, and a different character was saying no, no it isn't. He was trying not to make the boy mad. In one scene, a man was given a gift of a record and he wanted to play it to listen to the music. But they boy doesn't like music with words, so he said he didn't want to. The town is running out of soap and other supplies, since they have no more electricity, automobiles and are the only people left in the world. Anthony didn't like electricity and cars so he made them not work.

At one point, the man who received the birthday gift started to drink alcohol and was getting a little drunk. He then got loose with his lips and was saying that there were only 2 more bottles of alcohol left in town because of the boy. The boy eventually turned this man into a jack-in-the-box and put him in the corn field.

The parallels, are not being able to say what you want, having to choose your words so carefully, and agreeing with things that you know are wrong. Akila is so volatile right now, that we are all walking on egg shells. I find the kids all the time correcting each other and trying to help each other phrase things so it won't make Akila mad. They can be on the opposite side of the house, and if she hears a tiny conflict they are having, she comes running through the house and starts giving them heck.

This town felt like they were being held hostage by this young boy. We often feel the same way. Akila had to take a shower today. Had to. I didn't tell her she had to. I started off this morning asking her what time she would like to take her shower. She said later. Wouldn't get specific. Got yucky each time I brought it up. After dinner, I had to tell her that she would not be able to play dolls with Imani until she showered. She went berserk.

Big time berserk. Kicking, hit me in the face, pinching, and other things. I remained calm for awhile, but eventually I had to restrain her as she was attacking too much. As I was restraining her, she got her teeth on my forearm right above the wrist and was biting down hard. To get her to unclamp from me, I gave her a thump on the side of the head. Not a hit, but a thump. I shouldn't even be admitting this on the blog, but I am. If child protection wants to come out, I'm ok with that. She was spewing all kinds of nutty things out of her mouth. She gets totally manic during these times. Accusing me of all kinds of things. At the crisis home, while being restrained one time, she was accusing a staff of raping her. She has done that with me before as well. Tonight she said I gave her a black eye. I was nowhere near her eye. The things that she says and makes up are wild.

She was saying I broke her arm also. Not at all true. Last week Michael had to restrain her when I was gone, and she was obsessed for days that he broke a finger of hers. Had to show everyone how it was swollen. Didn't look swollen to me, but I agreed with her. Didn't want to end up in the corn field. She hit, kicked and pinched him. But she was obsessed with how her finger hurt. She even went to the nurses office. Would love to hear what she told the nurse.

After church, Michael and I were both in the kitchen making brunch. Zeke was helping us. She came into the kitchen, and started yelling at Zeke for how he was stirring the hash browns. He was doing it perfectly. But she had to yell at him. Then she had to push him. I could not get her out of the kitchen. She just wanted to stand there and yell. I was looking all over the house for her teddy bear as the OT suggested using it as a symbol that she needs to go to her room and take a break. Akila liked the idea. I knew it wouldn't work. But I like to try these great ideas to show how smart I am. Ha. No, I will try stuff.

I found the bear, brought it to her. She got more elevated. Didn't help. While I was searching for the bear, she also hit Zeke. She has a thing for Zeke. He can't do anything right. She constantly yells at him. Poor thing, he is the sweetest thing too. Then she is totally obsessed with Imani and thinks Imani is her personal playmate 24/7. Imani is sick of it. Hezekiah just explodes at her and smarts her off all the time which elevates her. Then I have to control myself not to be annoyed with him.

It is hard, so hard. I was hit in the face twice today, kicked 7 times, pushed 5 times, pinched and scratched a ton during the restraint, and hit in the back, shoulder, arms and gut at least 15 times. How much do you put up with this? Meds are obviously not working. I am going to have to call our social worker this week. Not sure if much is going to happen though. It does feel like we are living in the Twilight Zone.

Friday, January 6, 2012

A night away...

All of a sudden in the last week, we are back to what it was like the last week before Akila went to the crisis home. I once again have the icky feeling that I can never leave the house if Akila is home. Michael is a great dad, but Akila is super obsessed with me and if I am not home, she completely, and I mean COMPLETELY, loses it. It is a yucky feeling.

A good friend of mine from high school lost his mom this week and I am going to Willmar tonight to attend the funeral in the morning. It took me two days to figure out how to make it work. I was trying to find a PCA for Saturday morning, and other options like that. When a friend reminded me of one of my high school friends who's family has taken Akila for some overnights in the past to give us a break. I emailed her yesterday and within a few hours it was all set up. It is such a blessing to have friends who can help when needed.

And now I have the awkward feeling of looking forward to going to a funeral. Actually, I am just looking forward to seeing some good friends and people I haven't seen for awhile. My friend's mom had alzheimer's and in many ways, it is a blessing to their family. She was really struggling. You know how you have different groups, maybe your high school friends, church friends, work friends, neighborhood friends, blog friends or various groups like that? Today I am thankful for such a great variety of friend groups, and my blog friends are just as important as any of the groups. I truly have great friends. Thank you!

Thursday, January 5, 2012

Amazon, shop away!

I was inspired by my friend Dorothy to put an Amazon search box on my blog. We actually buy a lot of things through Amazon, so I figure that they can send a little love my way!

If you ever need to order anything off of Amazon, do it through my site. It does not need to be anything related to my site, or kids, or adoption, or FASD or all of the fun stuff I blog about. It can be for dog food, books, mixers, etc. I will get a small percentage of whatever you order. After 3 months of unemployment, it might help us to catch up!

If you are one of Dorothy's readers though, of course do it through her blog!!! I don't want to steal potential moola away from her family! Thanks friends, shop away!!!


Akila has been doing OT the past few weeks (Occupational Therapy). Some of the different professionals have wondered if some of her behaviors are sensory related. I don't really think so. Does she have sensory issues? You betcha. Are they what are causing her to rage? NO!!! Would more sensory outlet help her to rage less? I honestly don't think so.

She can come home from 2 hours of intense dance class, and rage the same as she did on an evening without any sustained sensory output opportunities. Is sensory stuff good for her? You betcha. But I know her well enough to know it is not going to stop the anger. Yet we are doing it to show that we are good parents and we are playing the game, checking it off the list. Do I sound bitter, or hostile? I hope not.

I am just trying to say that I know my daughter. It sometimes does get frustrating when someone new comes into the picture and has a suggestion they think is brilliant. It almost always is something we have tried. I know they are well intentioned. I get that. I just know that they don't get what it is that we are dealing with. It is pretty hard to imagine what it is like to live with a child who is hitting, kicking and punching you multiple times a day.

Her OT appt this morning was interesting, to say the least. She got mad right away, and started calling the OT a stupid woman and stupid. Showed her major attitude. It was kind of refreshing. That sounds nice, doesn't it? But it was nice for someone else to see how angry she can get over something so piddley. The OT almost kicked us out. Well, not kicking out, but said we might not be able to meet today as she explained to Akila that it didn't seem like she wanted to be here and it wouldn't work this way.

The only reason Akila calmed down, is she told the OT she wanted to do some food tasting again. The OT brought her to the kitchenette to get some samples of food and Akila was immediately cooperative. Why? Because she got her way. This is the number one "calming technique" that Akila prefers when she is escalating or at the top of the red zone. She will settle down immediately if you give her what she wants. It would have been interesting to see what would have happened if they had not gotten the food.

The interesting thing, is that when we were leaving, the OT said that she isn't thinking this is a sensory issue but a behavioral issue. Ya think????!!!!! Hopefully she will put that in her report and we won't have to do OT much longer.

Wednesday, January 4, 2012


I had a nice day yesterday, even running errands and going to dr. appt's was good. I then had a meeting that went until 8:00 with Julie. The deal was, after the meeting I would call Michael to see how Akila was doing, and come home if she was out of control. I called, he answered like this, "It is bad, really bad." and I could hear Akila screaming uncontrollably i the background. I said I was on my way home. Julie and I were still together so we decided she would come to my house to help put Akila to bed and that Dorothy would come over and we would hang at my house (not nearly as cool as the Kitty Kat Klub).

Akila called me right back and was screaming and crying in the phone. I put it on speaker so Julie could hear. She accused Michael of bending her fingers backwards, pulling her hair and a whole bunch of other stuff I couldn't understand. By the end of the call, I had her calmed down a little bit, but not much. When we got to the house, she was calm and playing with Imani. When I had gotten off the phone with her, Imani had gone up and asked if Akila would play dolls with her. An obvious ploy by Imani to try to help Dad settle down a volatile situation.

I knew that having Julie at the house would calm Akila down, but she was already calm. She played with Imani for awhile, Julie and I put her to bed, and it all worked out. However, Michael said she was the worst she has ever seen. She was attacking everyone, and totally out of control. He had to restrain her finally. He was quite shaken. If she continues the way she has the last 4 days or so, living at home is not going to work. And today, because of that realization, I have a heavy heart. Again.

It doesn't help that one of our PCA's has cancelled. I love my PCA's, all of them. But I don't know if they understand what it does to our entire family when they can't make it. I totally know that sometimes they legitimately have to cancel. But I know that sometimes they could make it work. The cancellation, hit me hard while I had a heavy heart already. Especially because I have to bring Hezekiah to a dr. appt at 2:45, so I won't be home after school. I tried several options, and finally, one of her teachers is willing to have her stay after school an extra 1/2 hour with her til I can get her. How amazing is that? I do love our school, they have been very supportive of all our goofiness. My only other option would have been to pick Akila up at 2ish early from school and bring her with to the appt. I did not like that option. At all.

The boys have Awana's (a church program) tonight. I was sitting and dreading the idea of sitting her all night with the girls while Akila throws fits and rages as she will want Imani to play with her, the entire night. So I texted my brother who has something I need to pick up and asked if he was around tonight. He said yes and that my neice is leaving to fly back to college tomorrow and they were ordering pizza and we were welcome to come. Wahoooo!!! Thank you Jesus. After a couple hours of emailing, texting and calling to get the afternoon and evening figured out, it all came together.

Now I have to find something for Akila to do on Saturday morning. A friend of mine's mom died and I am going to the funeral in Willmar. I would take Akila with but she has rehearsal for the dance Winter Show at 1:30 and she can't miss it. I don't think the morning will go well to just leave her home with the family, and I haven't been able to find a PCA yet. Anyone looking for some excitement on Saturday morning from 9-1:30? ;)

Tuesday, January 3, 2012


I did not start the new year out right and today is my do-over. Today is New Year's Day for me. The sleepover backfired and made the last two days horrific and put me in a bad place emotionally. The kids left for school a few minutes ago, I am about to take a shower, and spend time in the Word. I am determined not to let the last few days define the new year.

I was driving Akila to dance last night, and I was emotionally spent. It was day 17 of a long break. The last 4 days were rough, especially the last 2 days. I had very little sleep, was having to take baths which I hate (shower/tub had new caulking so had to use the other bathroom with just a tub), and was on and off (mostly on) hit, kicked, poked and swore at. I feel like all I did for 17 days was tell Akila that it is Imani's choice if she wants to play with Akila. Imani played a lot with Akila, more than I could. But it is never enough and it is always on Akila's terms. When Akila is off on this rant, I offer to play dolls with her, or whatever she wants. She does not want me to. This use to work, now it doesn't.

I am looking forward to getting back into a routine. We are still trying to find a routine this year with PCA support after school. I have a PCA today to take her to dance. I will start at lunch time running Zeke to dr. appt's, going to a dr. appt with Kathy, and then to a meeting tonight. After the meeting, if things are not too crazy at home, I will be getting together with Julie and Dorothy- just what I need to start off the New Year. My friend (who goes to the same church but I have not met, yet!) at Days of Wonder and Grace wrote a post that I read last night after putting the kids to bed. It helped to center my tired and hurting brain and heart. Akila was chosen for me by One who knows all, by someone who knew I needed her in my life. I am grateful to be Akila's mom.

Monday, January 2, 2012

What was I thinking?

I let Akila have our neighbor girl and her brother sleep over tonight. That is the last sleep over for 2012. Please remind me of that if I lose my sanity again, which I will do.

It went really well, for close to 6 hours. Isn't that amazing? Shouldn't I be so happy, and full of joy? The neighbor girl, M, and Imani played basically whatever Akila wanted for at least 5 hours. Then, at bedtime, they wanted to watch a movie. Akila did not. Have I mentioned that since she has returned home, she never wants to watch any TV, or movies. Or go to movies. She did watch some at the crisis home, but it was very monitored and scheduled.

But she flipped out when they wanted to watch a movie. She wanted me to force them to play dolls with her, some more. And she flipped out big time. I had to restrain her for the first time since she has returned home. I almost had to yesterday when she clocked me in the face hard, but instead I left to go to the grocery store to gather my composure. I should have left tonight, but I couldn't. She was way too out of it, and it was my own dumb fault we were in the mess so I couldn't leave poor Michael to deal with it.

I almost had to send the kids home at bedtime and cancel the sleepover, but I really didn't want to do that to the mom. Their mom is a single mom of 4 kids, and her oldest daughter who is 18 has FAS and is currently living in a crisis home awaiting a group home placement (has been waiting since May). The daughter is home for the night. I might have totally thrown their night off, so why should we both have horrid nights, right?

Not the best way to start 2012 out. What was I thinking? Tomorrow is day 17 of the longest winter break ever. I am ready to run for school board to make sure such things don't happen anymore. Except my school district doesn't have elected representatives, so I can't even do that. Sorry teacher friends, I love you all, but 17 days is too long. :)