Wednesday, November 30, 2011

Honor roll

Akila has made the honor roll for the first time ever. Wahoooooo!!!!! I can't even tell you how excited I am for her. She was very proud of herself, and that is so important. The other 3 kids have made the honor roll (our elementary even does honor roll) and Akila never has, and this has bothered her. We have told her numerous times that she has made the honor roll from our perspective, as her grades have always been amazingly good. But this time, she will get to go to the honor roll celebration. We will be there with flags, posters, balloons. OK, we won't go overboard, but it is possible she will never make it again.

This accomplishment, is one that would not happen without accommodations. Some would say it isn't fair. I have been emailing with a parent who's local school district has been trying to get all the students on an IEP to switch from letter grades, to pass/fail and put it in their IEP's. They have said it isn't fair to a student who works hard and gets a B, compared to a student on an IEP who got a B with accommodations. I say poo-poo on them.

Just because the student on an IEP had accommodations, doesn't mean that they didn't work hard. It doesn't mean that they deserve the B. It means that their brain functions differently and their journey to the B is different. It doesn't mean it is equal to the non-IEP student, but it does mean that it is fair.

I acknowledge that if Akila had to do homework, her grades would be different. The grades on her homework would have brought her grades down, no doubt about it. She got 2 A's, 1 A+'s, 3 B's and 1 C. I also know that if she didn't have an awesome 1:1 aide working with her and helping her, her grades would have been lower. But isn't this why we give these students accommodations? So they are able to do the work, understand better, and have some success? Doesn't Akila deserve the sweet taste of success, just once in awhile?

I don't know what that school district is thinking, that kids on IEP's are going to make the curve harder, bring other students rankings down. Seriously? How many kids on an IEP are really going to be doing that with their grades? To be trying to force across the board all IEP students to go to a certain grading system, no matter what it is, seems to be contrary to the whole idea of special education and IEP's. The idea of an IEP is that it is an "individual" plan.

Will Akila make the honor roll every time? It is very unlikely, although I would welcome it! I am sure that some people in the school or out in the world, might think there is a connection to her grades and the fact that she is currently not living at home. I would agree if she were doing homework, but she isn't. Homework is not the reason for her good grades, well, it is I guess since her exemption from homework is one reason why the grades are high.

One factor for the good grades, is that she has different teachers every hour. She does not sitting in the same room for the majority of the day, annoying the same teacher. It is like she gets a fresh start every hour. Some kids have a very hard time with these transitions, especially FASD kids. I do think this is kind of hard for her, but in some ways, it is more to her advantage. When she gets to know just one teacher really well, that is when she starts to push back more and show some behaviors.

I also think that the team of teachers she has have been very patient and understanding of Akila, and for this, I am very grateful. But truly, she has a fabulous 1:1 aide, and a really good special ed teacher this year, last years special ed teacher was not very good. These two ladies have worked their tails off with Akila, been patient, understanding, encouraging and have certainly made a big difference.

And then there is the meds. The meds have helped for sure, although she has had some rough behavior at school. Somehow, she has been successful at mainly showing her rough behavior to her aide and special ed teacher. They are amazed at how clever she is like that, and how the core teachers have not seen much of it at all. I am not surprised of course, as that is how she is with us. She shares all of her junky behavior with us, and the majority of the world, does not get to see it. I have a friend who has two kids with FASD, and she has one who shows all of his behaviors to the school and world, and one who is like Akila and doesn't. She says that even though it is hard to deal with her son raging at school, in many ways it is easier as the school understands him better than her other child.

I have mentioned before, that Akila's aide this year has been frustrated that the core teachers don't see what she sees, and that she looks crazy to them when she shares what Akila is doing. Been there, done that. She is in our spot now, and it sucks, feels yucky, and feels isolating. I get it. That is all I can tell her. And, of course the evil side of me, is relieved that someone else is experiencing the same situation.

Today, I am celebrating Akila's accomplishment. I am very proud of her, and I don't care what others think about it. We will go to the ceremony next Thursday, and have a few minutes of feeling like typical parents.

Tuesday, November 29, 2011

FASD research opportunity (in Minnesota)

Akila went to the VA Hospital last week to participate in a research project for FASD. They are doing MEG (Magnetoencephalography) measurements of FASD children and they are looking for more participants. In particular, they need more children diagnosed with FAS, but will still take ARND diagnosis's also. It takes about one hour and the pay is $20-30.

The VA is doing this in partnership with the University of Minnesota. The MEG measures brain activity. If you are interested, call Nancy at 612-467-1458.

Monday, November 28, 2011

Road trip

Dorothy, Julie and I drove 90 miles out of the Twin Cities last night to surprise our friend Kari and bring her an advent basket. It was a blast. Kari is a blog friend, and real life friend who has been very important in my life. She was the trainer at the first FASD training I was able to get Michael to attend, and she really explained it all in a way that clicked with him. That was the only time he has seen her, and he still speaks highly of her and the impact her training had on him.

Kari's blog was also the first one I read and it inspired me in the fall of 2007 to start blogging. Many of us love Kari dearly, and it was lots of fun to surprise her last night. I texted her that I was going to be driving through her town and was wanted to connect to drop off some GFCF oats that Dorothy had found for her. When she showed up at the coffee shop, there were 3 of us and we really surprised her.

The even better thing, is that we have now learned that the timing was good, it was God's timing. Kari needed a lift yesterday, and He used us to give it to her. That is so encouraging. We love you Kari!

It was also a great way to make a 90 minute drive fly by, us nutty gals just blabbed the whole time and time flew!! We even stopped for dinner when we got back, and I was still home by 10:30. Normally, I don't get home from our meetings til 1 or 2 in the morning. It was a great quick little trip, and one we should do more often!!!

Saturday, November 26, 2011

Value of being weird

While Akila has been at the crisis home, we have been trying hard to do things that are hard to do when she is home. We have missed Akila dearly, but have also really valued this time that we have had to be "normal", to vegetate, to relax, to stay up late and sleep in. But, I have to admit, I am truly and honestly looking forward to Akila coming home. I did not think I would feel like that. I think I only feel like that because the med she is currently on is helping so much. I have hope. Hope is a good thing (it can be a dangerous thing if it isn't mixed with a good dose of reality though-but we have lot so that), it has been a long time.

But back to "normalcy". I always tell my kids that they are weird, and I wouldn't have it any other way. I don't like normal. That must be why God chose me to be Akila's mom. We are not a normal family, even without the issues Akila brings to our family.

Our kids don't have cell phones. Imani was at a play date yesterday with 5 other 11 year olds. She was the only one without a cell phone. I am proud of this. She does not need a cell phone at 11. I don't mean that as a judgement against parents who have given their 11 year old's cell phones. It is just something we don't believe is necessary in our family situation. Would it be nice? Yes, there are times it would have been very "convenient", and times it would have made it much easier to communicate with Imani, or even Akila.

The thought of giving Akila a cell phone is not an easy thought. She loses everything, so does Imani for that matter. The one thing with Akila though, is that she doesn't have any true friends that she would be texting, so it might not be too bad, initially. All Imani wants to do, is text. The bummer with poor Imani, is that if we were to get her a cell phone, it would send Akila to the moon. But I hate to give her a cell phone just to feel "in"- that would be too normal!!!! I want her to feel cool about not having a cell phone. I have work to do in this area. One of her friends has even offered to give her a cell phone that they could easily fit in their family cell phone plan. A very generous offer, but again, I am not ready.

We don't have a cell phone plan. My cell phone is through the dance studio where I work. Michael rarely uses his so we have a pay as you go plan for him. So, to do a cell phone family plan would be a huge addition to our monthly budget, especially since Michael's new job and salary, will be lower than what we have been living on. I'm looking at this as a great new challenge that God has placed before us.

Anyway, my point is, we are not normal. We don't sign up for many activities, our kids are not over scheduled. As a matter of fact, when I leave one night week sometimes for an activity (speaking event, meeting, etc.), most of my kids whine that I am leaving too much. They have no idea what "normal" families are like. If you are a "normal" family, God bless you. I am truly not judging you, please know this. I just love being weird. I have always wanted to teach my kids the value of being weird. I want them to know it is OK to have dread locks. It is OK to wear socks that don't match (I do not match socks after laundered). It is OK to wear the hat with the jingle bell attached to it. When I was in junior high, I had a green sweatshirt that had s0 metal rivets in through one of the sleeves, and each rivet had a different colored ribbon tied through it. It was hideous. I loved it. My science teacher (whom was a total GEEK- not "normal"), would sing some song called "Buttons and Bows" that made me sick. Not because it wasn't "normal", but because he was a horrible singer.

I have mentioned in the past that my mom was a member of the Willmar 8. She was a quiet rebel, not normal at all for a small town mom in the 70's. I just think that "normal" is what the Lord planned for me. I am by no means saying He thinks I am going to be a superstar. Or that I will be famous. What I mean, is that I am not going to go by what the world says I should be doing. That I should vote for this candidate, or that candidate because I have a special needs child. Or because my kids receive assistance and go tot he public schools. Or because I believe strongly, to the core of my heart, in service and giving back. I will not do what the party line tells me to do. I am not normal, I am weird.

I do not make sense. Many people assume I am conservative because of my religious views. Many people assume I am liberal because of my experience/views on education and special needs kids. Again, I am weird. You cannot be guaranteed of either viewpoint with me. I am not normal. And I am so thankful to God for that stance. I am weird!!!! Wahooooo!!!

So, here is a picture of Zeke's birthday party, he had 3 buddies over. The boys got to have an overnight party this year, as it was possible with Akila being gone.

Here is Hezekiah's birthday party and the 3 buddies he had sleep over

The picture on the right, is of an Air Swimmers flying shark. The boys each got one for their birthday, Zeke got a clown fish one (don't have a pic of that one). They are honestly one of the coolest toys I have ever seen. They are basically a helium balloon that has a remote control and "swims" (flies) in the air. It is so cool, can't even explain it. Highly recommended for a Christmas gift.

Above is a picture of Imani cooking. Can you believe how grown she is? It is freaking me out. Puberty stinks on so many levels. I am not ready. But she is amazing, and we are blessed.

Thursday, November 24, 2011

Home visits

Akila had an appt on Wednesday morning that I brought her to, and then I brought her home for her first visit since she left to stay at the crisis home on Sept. 1st. She did really good, and it went super well and was so nice to have her home.

At first, she just walked around the house, kind of taking it all in and saying that she remembered different things. Then she played for awhile with Zeke and Imani, and spend a ton of time going through all the toy catalogs we have gotten in the Sunday papers. She also spent some time drawing.

When it was time to go, she did not put up a fuss at all. I had told her the day before the two rules were that if she got out of control, she would have to go back to the crisis home right away, and that if when it was time to go, whether she was being good or not, if she threw a fit and did not cooperate, she would not be able to come again for a home visit and that we might have to call the staff to come and get her.

Then this morning, I picked her up at 10:00 and brought her home. We were planning on leaving for my brother Tom's in Andover around 2:00, so she would have some more time to spend at home. Once again, she did great. She played a long time with Zeke and Imani, played catch with Hezekiah, and did some more drawing.

At Uncle Tom's, she was awesome. She asked Aunt Paula to show her how to knit. Paula knows how to crochet, and knit a little bit. But for a couple of hours, literally, Akila knit. She needed a good deal of guidance, but Aunt Paula was patient with her. The biggest challenge was that at the end of the night, Akila wanted to take the knitting stuff with her to the crisis home. Knowing that they are not going to allow knitting needles, I said no. She thinks it would be fine to have them there, I explained why they couldn't have them. She disagreed, and put up a fuss for awhile.

Normally, this would have been explosion time. It was not. Amazing. We normally can't stay as long as we did today. I had told the home we would have her back at 7:00, we got her back at 8:30 and could have stayed longer. I am definitely feeling ready to have her come home next week, and am looking forward to it. This medication change has been amazing. There have been other times when she has started on a med, and we noticed a good difference. But I have never noticed a difference this big. She was knitting for at least 2 hours. In the past two weeks, she has put together two 500 piece puzzles.

I am thankful for so many things on this Thanksgiving day. I am thankful for crisis homes and the staff that work there 24/7 and on holidays. I am thankful for medications that are able to help people function and become or stay healthy. I am thankful that after 3 months of unemployment, Michael will be starting a job on Monday. I am thankful for all 4 of my children, and that one is working so hard to behave, and the other 3 are working hard to support and love her. I am thankful that my neighbor/mom Kathy, has finished her last treatment of chemo and can now try to recuperate and get back to the active life she loves to live. I am thankful for some newly deepened relationships with some faithful women who are parenting tough kids. I am thankful for the blogging and the opportunities that we have to share and support each other through this virtual world. Mostly, I am thankful that Jesus laid His life down for me, and shows endless mercies on me daily.

Monday, November 21, 2011

Two words, meant a lot

Akila was great yesterday when she was with us. The one "Akila moment" was when Zeke was checking us in at church. Our church has a computer system that you check in on and we have a bar code thingie we can scan so the kids name tags print out. The kids take a turn each week scanning the bar code and printing the name tags.

It was Zeke's turn, and he ran ahead to do it. I caught up to him when it was his turn in line. Akila came up and went nuts as she thought it was her turn. I told her it was Zeke's turn, and she disagreed, in "Akila fashion", but not quite as excessively as normal. She was argumentative, rude, and called me a liar. I ignored her and was just trying to walk Zeke through the computer. She kept calling names, and when Zeke was just about done she walked away.

I turned around and a father who was waiting in line behind us smiled and said, "It's OK, " very encouragingly. I smiled said, "thanks, it's our life". What was so nice about this brief interaction was that the man was understanding, encouraging and not judgemental. I know he only said two words, but his smile, body language and patience spoke also. It was huge, and it was what I needed.

Often, when in an almost identical situation, you can see, feel and hear people's judgement and impatience- even at church. It was a beautiful moment, I have thought about it more than once in the last day.

The other great thing about this situation, was that when Akila walked away, she went to the water fountain. When I caught up with her, she had already moved on and was no longer angry. This is unheard of, and she has been doing this for 8 days. I really think that the new med, Abilify, is helping her a lot. There have been several instances at the crisis home, where she could have gone off the deep end, and did not. She was even kicked by another consumer last Thursday evening and the staff said she handled it really well. This is nothing short of amazing, nothing short of the Lord intervening when we really needed some hope.

Other than that little incident at church, she was very well behaved yesterday. I think we are getting very close to the point where she will be able to come home, and I am really looking forward to it. This is nothing short of a miracle, another thing I am so thankful for. God is good.

Friday, November 18, 2011

Pointing the finger

Akila is easily offended, and it is really difficult to deal with. She was offended last night because of the after school bus driver. She actually kept on complaining that he "abused" her. She is so going to get us, or someone else in big trouble someday with a false allegation. She was screaming that a staff was raping her last week while he restrained her. Can you say ticking time bomb?

Yesterday, the bus driver would not start to drive until the kids cleaned up some kind of mess they had made on the bus. I am not very clear on the situation, as over the phone, Akila gets rambling and mumbling, and is very difficult to understand. But he would not leave, and said he would sit there until it was dark. She feels this was abuse. I explained to her that is not abuse, and if they had made a mess, they did need to clean it up.

The comment about staying there until it was dark, is what seemed to put her over the edge. I explained this was just a figure of expression, that he was making a point that he would wait as long as it took for them to clean up the mess. But she did not get this at all.

Then there is a student at school who told her to shut up. She is very offended. This student also takes dance at the studio I work for and where Akila takes dance. She thinks I should kick her out of dance. I explained that I could not do this, and explained all the reasons. She of course disagreed, and said I was abusing her by not kicking this student out of dance. We went round and round. I tried to change the subject, to no avail. I also explained that she has done a lot worse at dance and has never been kicked out. She of course disagrees.

Today at school, something happened with a student also. I have no idea what, as she was so irrate as she was explaining it to me on the phone, that I did not understand any of it. But she was mad at her aide also, who was "rude" to her. She also gets going on the staff at the crisis home, and how rude they all are.

This is such a hard thing to deal with, as she would honestly sit and complain about others actions for hours. She just cannot see that it was her actions that usually caused others to have to do something that annoys her, or something she thinks is unfair or rude. Right now, when she is like this on the phone, and I can't distract her, I hang up. I'm not sure if that is the right thing to do, but I do it. Soon, I won't have that option.

Blaming language

I recently found, or should I say noticed, some language that has bothered me a little and I thought I'd share it with all of you and get your opinions.

FASD is a primary disability, one that a child/person is born with. Then there are what are called, "secondary disabilities". This is where I have recently been a little bothered by one of the definitions used by some organizations. A definition that an organization I am familiar with has been using for secondary disabilities is: "Secondary disabilities are those that develop as a result of failure to properly deal with the primary disabilities."

Let me tell you the part of this definition that bothers me, if you haven't already figured it out. This part, "that develop as a result of failure to properly deal with". This to me, sounds like if us people who are parenting and loving our kids, had worked harder, and "more properly", our children would not end up with the secondary disabilities. Akila would not have ADHD if I had only been more proper in dealing with her brain damage. She would not have a learning disability if we had not failed to deal with her properly.

I know this organization probably does not mean it like it sounds. Or maybe I am misinterpreting what they are saying. But that is how it sounds, like I failed. And all of you out there who are parenting and loving our children with FASD, have not done it properly. According to this language, we failed. And this definition is being used when training people.

I did send an email yesterday with my opinion on the wording. I was not able to find their source on the definition, and I am guessing they have one. I searched through Ann Streissguth's book, "Fetal Alcohol Syndrome" where she talks so much about secondary disabilities. She is one of the main researchers on secondary disabilities. I did not find this definition.

Here is the definition that sounds better to me: "Secondary Disabilities are those not present at birth but occur as a result of the primary disabilities." Yes, Akila has ADHD, learning disabilities and other mental health issues. They are for sure a result of the prenatal exposure to alcohol that resulted in brain damage.

I know that some people may think that I am being too sensitive, and maybe I am. But it worries me that we are training people out there, educators, medical professionals, students, etc. with language like this. If someone is not involved enough within the field of FASD, or within the family structure of a family living with FASD, they could make some serious assumptions about us if that is the definition they believe.

I know that it is not our "failure" that caused Akila to have ADHD, and some of her other secondary disabilities. But people like me who are parenting children with FASD, get enough messages, subtle, and not so subtle, that we are failing. No matter how involved we are, no matter how hard we try, no matter how much we learn, we do go through periods of feeling like we are failing. How could we not with the extreme behaviors we are facing daily, hourly. We certainly don't need advocacy organizations to use language that sends the message we hear daily from the majority of the world.

I have said my peace.

Thursday, November 17, 2011

Stupid van

When Akila called after school today, she was not in a good mood. She was whiney and complaining like she normally has been. Hoping that she is doing OK the rest of the evening, and not spiraling back into the abyss.

The stupid van didn't want to start this morning (notice the word stupid in my vocab a lot lately? I am kind of immature, a teenager at heart!). Michael was going to take it to Honda to get new tires, they have a special and the garage we were at this week said the front tires were in really rough shape. Perfect. So he ended up at Honda, and had them fix the exhaust. They said the battery had something faulty with it also so we said to fix that also. Basically, we just about have a 1999 Honda Odyssey with over 184,000 miles on it, and all new guts. It should be good forever now!!!! But I know better.

Good news is that I found our receipt from 18 months ago on the battery and it was still under warranty. So our bill today for 4 tires and a fixing the exhaust system was just $737. Ouch!

But the even better news is that Michael has accepted a position and will start the Monday after Thanksgiving. What a relief and a blessing. It is close to home which is nice as his job the past 5 years has been at least a 30 minute drive (in Eagan). We will have the best health insurance coverage we have had in over 10 years, phew!!! The salary is much, much lower than what we are use to, so we are going to have to make some changes for sure. But we are thankful to the Lord for this opportunity, and will work hard to figure out how to make it work.


Akila really has had an awesome week so far, and I am so thankful!!!! She started on a new med on last Friday, and has a great behavior streak going that started on Saturday. I really do think it has something to do with the meds, not just a fluke.

Tonight, she was in a great mood on the phone, both times. The last call, she put one of the staff on the phone who told us that she has had a great night, been cooperative, enjoyable and working hard. She said she hasn't worked this week yet, but when she worked last week with Akila, she struggled greatly with her. She said it was like Akila was a different child.

Oh how I pray this can continue. It is amazing how much hope this can give you. As I have been very honest and open with, I am not convinced. We have had too many let downs over the years, and I have learned to protect my heart from let downs. But I am hopeful. I know God can do amazing things, and work wonders. I have ultimate faith in Him.

I am also experienced enough with medications, to know that even if this med is helping her right now, it more than likely will not always. The majority of meds seem to wear off eventually, or their effect is not as strong long term. But even if this med gives her a good month, or a couple of good months, it is worth it. We are in survival mode, and we will take what we can get. Right now, I am just happy to hear good reports, after several weeks of rough reports, and lots of restraints.

On another note, I don't think I mentioned that our minivan broke down last week. We actually had an appt for this Monday to have it looked at. The lights on the dashboard started flashing on and off all the time about two weeks ago, so we made the appt. Plus, the steering wheel has been shaking for over 6 months and gradually getting worse. Then, last Tuesday, the van went dead and we had to have it towed in. Oh yeah, and over the weekend before it went dead, it started to sound really loud like a race car, and exhaust/muffler problem probably. Great.

During our current situation of unemployment, having one car is not so hard from a time perspective, since Michael doesn't need a car to get to work. But it royally stinks more than normal from a financial perspective. There was just one day last week when i had to get Akila to a Dr. appt, which was at the same time Michael had an interview. Dorothy and Robert were kind enough to let us use their extra vehicle for the day. Other than that, it has worked just fine having just one car.

We have a local garage that we have found where we love to go, when we have to. The two guys who run it are top notch, very ethical, and very fair priced. Turned out, the alternator they put in it in June was faulty so they replaced it at no charge since it was under warranty. But we also needed new engine mounts, all 3 of them, and that was not an easy process. $650 later, it is running. But it is still super loud. He said that the shaking from the bad engine mounts, effected the exhaust. It is totally fine to drive, and we can decide when to replace it in the future. So basically, you will know when we are arriving anywhere, as it is fairly loud. Fits right in our neighborhood!

Tuesday, November 15, 2011

Racial slurs

Akila has been using racial slurs for several years now. She often doesn't use them in the right context. She will call me the "N" word, and a black person a "stupid white person". Most of the time though, she will use them appropriately. Haha. Appropriately. Wrong word. What I mean, is that she will call a white person a stupid white person, or a black person a stupid black person.

I and many others have had conversations with her about this, and how inappropriate it is. How it can and will get her into some serious trouble someday. She obviously doesn't get it, and uses these words when she is not very regulated, and is having a hard time controlling everything she is saying, and doing.

And now we have a new problem. A taxi is what is driving her to and from school while she is in the crisis home. Mpls Schools transportation says that is our only option. Not a great option. Different drivers all the time, and they are obviously not trained in dealing with kids, and for sure are not trained to deal with special ed kids, and are especially not trained to deal with Akila! There have been several issues. The taxi company has complained about Akila, how she won't buckle up, stay buckled, and is rude. And Akila has been complaining daily about the drivers and how rude they are.

Again, it takes a lot of patience to work with Akila, and these people are not trained. It turns out that Akila got the pack of cigarettes mentioned here out of the taxi. She said they were on the floor and she picked them up and took them. Lovely.

But here is the new problem. Many, I think the majority, of the taxi drivers are Somalian. Not a problem in and of itself, except that this is the new group that Akila hates now and is using racial slurs against. Last night, she was going off on the "blankety" Somalians. I told her that it is OK to be frustrated with someone, and to not like them even. But it is not because they are Somali that she has an issue with them. It is because of what they said or did. Now don't get me wrong, I'm not saying they did anything wrong even, but in her eyes they did. I have been saying that to her for months, as she complains about this staff or that staff at the crisis home, and brings their race into it.

I am now nervous, about when she figures out that several of the drivers are more than likely Muslim, and starts to say derogatory things about their religion. It is one thing for the crisis home staff to get called racial slurs, they know it means nothing coming from a child with brain damage (although I know it is still annoying), but for a taxi driver with no understanding of her disability, it might not go over well. So one of my new prayers, is that she can control her mouth with the taxi drivers and that if she doesn't, that the drivers will respond with patience. Lord knows that all who work with and love Akila, need lots of patience.

"Better" days???

Akila has had a couple of better days at the crisis home, isn't that awesome? Then why am I not excited about that? Because today at 1:00 we have our team meeting.

At the meeting, the manager of the home will report that she has had 3 better days, where she has made better choices and calmed down more quickly. Everyone will be really excited, and think that we are getting close to having her settled down. Wouldn't that be lovely if that were the case? I pray with all my might that it is the case. But can you blame me for thinking that this is just a phase?

She has more than once, and in the past few weeks even, had several better days in a row. That is always how she has been. It use to be that she might have a good week, followed by two rough weeks, or two good weeks, followed by 3 rough weeks, or something like that. In the past 6 months, it is measured more in days.

As awesome as all of the staff at the crisis home are, and they are great, and as awesome as the leadership team is that meets every two weeks to talk about her, they still don't know her like I do. They don't know her patterns, her cycles. Same goes for the school. They have been totally awesome, but I don't know if they really know what to think when I tell them that she will start to go down hill in November, as she does every year. In many ways, I think people think that I am being negative, pessimistic, and that Akila will live "down to" my low expectations if I have them. But they don't know her as well as I do, nor do they love her like I do. And that is not at all a judgement or a bad thing, it is just a fact. Like I said, I think they are all really good at their jobs.

So, I will bring the incident reports with me that the crisis home mails me after each "hold" (restraint). It is truly comforting, if that is the right word, to have written documentation from this home of how Akila acts during a rage. One report, which I will not give you all the gory details from, is very interesting. The staff writes about how after she was very verbally aggressive (yelling racial slurs and swearing), and physically aggressive (punching with a closed fist, kicking, scratching and stabbing with a pen) the staff eventually after several attempts at redirection, decided to remove himself from the situation since Akila was mad at him. He was going to go downstairs, and while doing so, Akila ran at him and attempted to push him down the stairs. He was able to retain balance and did not fall. He went downstairs and she then turned her aggression to another staff. He returned after 2 minutes and ended up having to restrain her for quite awhile.

There are more details, that are even harder to share- I will spare you. The entire incident report, could be one that Michael or I wrote a 100 or more times. Just put our names in, and it is our life. I am glad she has had a couple of good days. My sincere prayer is that the medication is helping her to be more calm and make better choices. But I am not ready to believe that the aggression is over. I will share that at the meeting, and once again, I will feel like I am being a pessimistic mom who might be perceived as not wanting her child. I want her more than anything to be able to live with us. I am totally willing to put up with all the drama, all the querks, all the swearing, all the challenges. I just cannot put up with the physical violence.

So please join me in praying that these last 3 "better" days, are the start of something new, are an end to the violence. But also please join me in praying for what to do if it is not. That is what is keeping me up at night and is breaking my heart. What do we do?

Sunday, November 13, 2011

Serving families w/special needs children- a unique idea

I just got an email from a family in our church that is trying to serve families living with special needs children. A small group of families is banding together to provide a date night for families like ours. How cool is that? I am in tears at the mere thought of this.

Often it is hard for people, families, staff, agencies, etc., to figure out how to truly support and help families that are living with special children. People want to help, but don't quite know how. This is an awesome idea of how to support families like ours, and I am so thankful to God that people out there are praying for us, and trying to find unique ways to support us.

I learned when my mom was sick 6 plus years ago, to not turn down help. I learned that when people say, "let me know how we can help", this usually means they have no idea how to help- and rarely it means that they also don't want to get involved (the majority of people really want to help, but just don't know how, or feel uncomfortable). I have learned to suggest a specific thing or two I am willing and capable of doing when I think someone needs help. I also think it is a blessing to "allow" someone to serve you or help you. I know that when I offer to help someone, I truly mean it and feel better when I am allowed to serve someone.

I am so excited that this small group has found a way to "walk the talk" of a Christian. They are not talking about it, they are doing something. I have politely declined as the date night is next week when Akila is still at the crisis home. Michael and I have been able to get out several times during this respite as the kids can stay home for a few hours and take care of themselves now. I guarantee that if she were at home, I would be all over this wonderful invitation.

Not what I expected to find...

When we went to pick Akila up for church this morning, I went with her into her bedroom while she was finishing getting ready. I grabbed her backpack to look through it for the missing money and she went ballistic. I told her I just wanted to get the fundraiser info so I could turn it in, but she wouldn't have anything to do with it. She obviously had something to hide in it.

On Friday after I found out she had "lost" the money from the fundraiser, I talked to one of the lead staff at the home and asked them to be on the lookout for the money. I also asked them to check through her room on Sunday when we had her at church. After she acted very suspicious, I asked the staff to for sure check through her backpack and told them how she was acting.

Akila was on edge today, kind of the typical Akila. Just about every Sunday, after we leave church, she is trying to remember the name of some of the songs they sang in Sunday School. When we don't know the name of the song, after she tells us 4 or 5 words, she gets very upset. Name that Tune is pretty hard with only a few words, no melody (she doesn't sing it, she just says something like "Christ Alone" and thinks we will come up with it). We had many guesses, but none of them satisfied her, although I am pretty sure we guessed the right song. It is not a game for her, she actually wants to know the title and doesn't. This causes much angst. Even when we are positive, tell her it sounds like a great song, tell her we know the song she is talking about but can't think of the title. Nothing matters to her except if we come up with the title, the right title in her mind at least. It is really fun.

Today, while she was getting upset, Zeke said something insightful. He said, "Akila, when we spend time with you, the purpose is to enjoy you. Not so you can be angry." She agreed, but kept on her pursuit of Name that Tune.

After we had lunch, and brought her back to the home, we all went inside to see a puzzle she has been working on. As Michael and the kids were in her room, the staff brought me aside and told me what they found in her backpack. A pack of cigarettes. NOT what I was expecting. I didn't even say anything to her. I need to, but am avoiding it as she is going to get yucky on the phone. But I guess I can just hang up. Maybe I'll call her now.

Friday, November 11, 2011

Stupid school fundraisers

Yes, I just used the word stupid in my title, but with good reason. I hate school fundraisers. Let me clarify, I mean the ones where they want the kids to sell "crap"; over priced trail mix, frozen cookie dough, trinkets, etc. I think they are stupid, and I can't hide my emotions about them. I believe I probably blog about them every year, but I am too lazy to go back and look.

I think that I mentioned withing the last few weeks that Akila called me on the night that the school handed out the fundraiser info. She was gung ho on selling it and the staff had told her that they don't do it, she would have to do it with her parent. I think she wanted to go door to door. When she called me, I reminded her that we never participate in these fundraisers. I always do a straight donation to the school, as they get MORE money that way, instead of getting the 20% or whatever it is that they get from the sales. Won't be doing it this year due to our current unemployment situation, but I have every year.

Plus, in a larger family, there is now way for each kid to sell enough stuff to get the STUPID prizes that get them so excited about. Who out there wants to give my kids a limo ride, so they can stop being obsessed with selling crap to get a limo ride!!!!!!! So dumb on so many levels. Then add a special needs kid into the mix, and it is a horrific situation.

Anyways, I reminded Akila how we never participate in them, and she just fought with me. Eventually, I had to hang up. Later, she was restrained. The instigator of a horrible evening, once again, was this stupid fundraiser. Have I mentioned yet that I think it is stupid? I'm a little obsessed with that word tonight, forgive me.

Tonight, Akila tells me that she lost two five dollar bills. What? I asked what she was talking about. She sold something out of the "stupid" book (I'm calling it that, not her-shocking) to her after school teacher. She now can't find the money. Perfect. I tried to get her to think of where she put it,but she kept getting mad. I also tried to remind her that this is one of the reasons why we don't participate in the fundraiser. It is too hard to keep track of the money. Now, more than likely, I am going to have to pay $10 to order this teacher's item.

I will repeat it again. Stupid school fundraiser!!!!

Tuesday, November 8, 2011

Structure within the home

I was just trying to explain to somebody how I anticipate things working out when Akila returns home. I fully expect things to be nutty again, and for it to be back to "normal" fairly quickly. I said that we plan on trying to implement some of the structure that the crisis home has, but we can't do it all.

After all, we want to remain a home, and if you place to much structure within the home, it will not feel homey. That is my opinion. One of the things they have been doing at the crisis home, is having Akila shower right after school before she can do any of her choice activities. She fights this every day. She did at home as well, and we normally tried to get her to do them in the evening. They did originally, and switched it to after school due to the problems that would arise at bed time.

She complains to me almost every day about the shower schedule. It infuriates her. I tell her that I agree with them and that she will have to do it at home also. She is not happy about this. Well, here is what I anticipate. All 4 kids get home from school, and I spend 30-120 minutes trying to get Akila to take a shower. While the other 3 kids sit and wait for attention/help. And during this shower game, she will be violent. There will be restraints. It will not be pretty. They have been doing this shower schedule with her for 9 weeks, and she is still fighting it. Not to mention that when she gets home, she will think that all the rules at the crisis home go out the window. Even though I have told her that we are going to implement some of the same rules, including the shower schedule. Blasted puberty and body odor issues. I so wish she did not need a shower everyday!!!!!!

So I am struggling with which of the rules to bring home, what kind of structure makes sense within our household. I admit I am not a structured or organized person. It is not in my nature. I am willing to do some of it for sure, but I don't think we will be able to make enough changes that it will make a big enough difference.

Sunday, November 6, 2011

Anticipating non-school days with joy

LinkThere is no school tomorrow. Normally, I start dreading a non-school day a few weeks before it arrives. It has been a strange phenomena while Akila is staying at the crisis home to not have this feeling of dread lurking up on me.

I actually look forward to these days lately. Unfortunately, when Akila is home, a non-school day means another full day (vesided the weekends), of putting out fires, staying off rages, protecting the other 3 kids and other fun things like that. Tomorrow, we are going to have a playdate with another family and get out of the house and do fun things, without having to worry about issues that may arise. Not saying we won't have any issues, but they will be the typical kind. Another thing I look forward to on a non-school day, is that I get to sleep in. When Akila is home, she is my alarm clock. I am a night owl and not a morning person, so this is a true treat.

I know that Akila will be coming home either at the end of this week or within a few weeks, but I am making sure to try to get as much out of this break as possible. I know things are going to change immensely when she returns. And as much as I have truly enjoyed this break, and am so grateful for it, there is still a part of me that longs for Akila to come home so I, or we, can feel whole again. I will easily feel differently after she has returned and starts beating on us again.

A sidenote- please keep us in your prayers as it pertains to employment. Michael is still unemployed (since Aug 15) and he has two interviews this week. Pray for wisdom if he is offered either of the jobs, as they are both below the pay range he is looking for. But God knows what we need to be sustained. It would be a real blessing in timing for him to have a job before Akila returns home.

Saturday, November 5, 2011


At the last team meeting at the crisis home, I shared my appreciation at how good the staff are. I told the manager and director that it is a very odd feeling to walk out of the house while your child is in a frenzy, calling names and obviously escalating.

They said no worries, that is what they are trained for and paid to do. None the less, it feels very strange. I will not lie, it also feels very good in an odd sort of way. To be able to walk out the door, or hang up the phone when she is completely dis-regulated and acting out of control, is a nice option. It is an option that when we are living with her 24/7, we wish we had sometimes.

This is one of the gifts of this break, this respite. To be able to walk away or hang up. And as good as it feels, it also feels very strange. Akila is my daughter, I love her deeply, I am responsible for her. And to leave her in a rage, knowing that she will more than likely be hitting, kicking or biting the staff, is an awful feeling.

It is similar to when your child, neuro typical or not, bites a kid on the playground or in preschool, or hits them. You feel awful. You apologize to the other parent, assure them it will not happen again and teach your child it is wrong and give them a consequence. The neuro typical child, will more than likely learn not to do it again. The brain damaged child, will more than likely not learn. Either way, it is embarrassing, and you feel awful. You apologize.

Each time I get a call that Akila had to be restrained (she was twice yesterday), I want to say can I talk to the staff she was attacking and apologize. Again, the manager and director tell me they are use to it. They also say it is easier if the parent does just leave when it is getting dicey. I totally understand that. It is similar to when I work in the church nursery and a child is having separation anxiety. It is much easier if the parent just bolts instead of trying to acclimate the child to the environment. We can do that, and the longer the parent stays, the less likely we will be- usually.

I keep wondering how much they pay the day to day staff. I'm guessing no more than $15 an hour, but hopefully I am wrong. These staff put up with a lot. Akila is not only hitting, kicking and biting, but she is also using racial slurs. Saying she hates black people one minute, white people the next.

The huge advantage these staff have, is that they get to go home and decompress. Parents don't get to do this. Now, maybe one or two of the staff also have a challenging child at home, and I can't imagine doing it at work and home. Akila will be coming home in the next few weeks, and we will go back to 24/7 challenges.

It has been nice to let my brain decompress these past two months. When Akila is at home, I am always thinking ahead, hot to avoid a rage or an issue. Then during a rage or issue, I my brain is at a heightened arousal mode obviously. After the rage or issue, my brain is processing what just happened, and thinking of ways to avoid it in the future. And the cycle continues, on average 5-20 times a day. Yes, my brain needed this rest, as did my body.

Not only is it hard on the body to be hit, kicked, and bitten each day; but it is also hard to restrain her. My lower back was not good going into parenting Akila. Now, it is a mess. The stress also does a job on my body. I have gained weight, and I am sure that some of my headaches are a result of the stress (although I have struggled with headaches/migraines since I was a teen).

I am so grateful for staff people who work in crisis homes, group homes, and residential treatment centers. I am sure that some of them are not fantastic, but I have only ran into fantastic ones at this crisis home. What I also appreciate, is that the staff at the crisis home, especially the director and manager level of staff, seem to understand FASD. And as I have shared, that is hard to find.

Friday, November 4, 2011

A Legislator

Last weekend, our local state legislator Bobby Champion was door knocking, and he came to our door. I listened to his spiel about light rail in North Minneapolis. Then, he graciously listened to my spiel on FASD. To his credit, he was a little bit familiar with FASD. He had some ideas about working with the churches to get the word out.

He even said to give him a call if I wanted to work with him on this. Well, what do you think? Am I going to call? YES!!!! I told the MOFAS Policy person at the MOFAS Annual Meeting on Wednesday night also (right before I went to the Kitty Kat Club- Meooowww!). She was excited and wanted to make the connection with me.

I mentioned to Mr. Champion that I believe FASD is what is causing so many issues in our community. The gangs, prostitution, drugs, etc. I watch my neighbors, I see pregnant women drinking, I see young people and adults who have all the behaviors of a prenatally exposed person, and I know we need to hit neighborhoods like mine HARD!!!! I am not saying that we don't need to hit middle and upper class suburbia also, we do. I especially see the light to moderate social drinking that is effecting tons of unborn babies. But in my neighborhood, I am seeing heavy to severe drinking effecting unborn babies (again, I know it happens everywhere, but I believe it is happening at an alarmingly high rage here).

I am excited that I may have found someone who will join "our" team. I just have to follow through. And I will!!!

Kind, firm & consistent

I had mentioned in this post that I was going to write about a report that was done by an OT at the crisis home. I'm finally ready.

Now, the main reason I can give this lady some slack, is that she was not able to interview us, so it is harder to get the full view of the situation. But even considering this, she has several false things in the report. When we did the intake at the crisis home, we brought a stack of paperwork, and were interviewed. I have looked through the paperwork we gave, and am not sure where this info is coming from.

One really interesting mistake, is that the report says "In addition, she has a past diagnosis of Alcohol Related Neurodevelopmental Disorder (ARND) prior to her diagnosis of FAS." Interesting, since Akila has never been diagnosed with FAS. But OK, maybe a staff told her that. She also states that there are conflicting reports as to whether her siblings are biological siblings or not. Again, maybe the staff were confused on this one. No big deal. She also stated that "reports indicate that Akila had prenatal exposure to cocaiine and alcohol." It was heroine, but doesn't really matter I guess.

As I read further in the report, what bothered me were several subtle phrases that basically put the blame on us as parents. There is a phrase that says, "The kind, firm consistency seems to be effective in order to handle her acting out behaviors". This statement follows an area talking about how her aggressive behaviors have diminished. OK, great advise. If only we would be more kind, firm and consistent, all our issues would diminish. Thanks. I've got to write that one down on the fridge so I remind myself of it hourly. Kind, firm and consistent.

It was also reported to the OT, that "Akila has overtly sexual behaviors and has reportedly sought out adult sexual sites on the Internet." This is true, we made sure the staff knew about this so when they brought Akila to the library for outings, they would then monitor her computer use. The next phrase, is yet another subtle message; "It is not clear where her initial exposure to this occurred". Later on in the report, she states again that Akila "has a history of sexual behaviors far younger than that which is expected and it is unclear how she was exposed or learned of such behaviors." Then, "It is highly recommended that access be limited to any inappropriate Internet sites as this puts her and others at risk." Oh, that's what we should do, "limit her access to these sites." Good to know. That isn't why we told the staff to control this one, and to watch her like a hawk at the library (since public libraries don't have controls on the computer as it abuses our free speach- barf!). Kind, firm and consistent- I must keep reminding myself. I also like the "limit" her access, instead of "deny" it, or something like that. Limited exposure to that inappropriate stuff is OK, right?

I am sure that this OT did not mean anything by these few phrases that I felt annoyed by. The problem, is that we as parents of FASD kids hear these things over and over and over by a variety of professionals. Sometimes more subtle, and often not at all subtle. I know these professionals don't necessarily mean it in the way that it comes off, but I am sure that some of them do. I think that this OT should have gone the extra step and called us, especially to clarify some of the things that she knew were conflicting. However, I still think she would have had some of these subtle messages.

When I did the training earlier this week with the counseling center staff, one of the things I listed as a stressor for marriages, is the blame and judgement factor that we as parents always feel. It is often a very deflating feeling to consistently get this message. You can't help but sometimes really start to question what you are doing, and if you should be doing this at all.

Somebody put a comment at the end of the post I mentioned earlier in the first sentence. In that earlier post, I wrote about how the OT report annoyed. Here is what an anonymous commenter posted, "Pride sucks. Get over it Barb, and receive the points of views. In order to see a gem shine, it has to go through the process. " While I understand what he/she is saying, I don't think that they understand what my point is.

Yes, pride does suck. But my point is that I have my head between my legs right now. We are so at a loss for how to parent Akila, how to deal with her aggressiveness, how to deal with her anger, that we have agreed to have her in a crisis home. We are basically saying that we are in over our heads and need help. That is why I requested an OT evaluation. I don't know what to do, and I am asking for help. Not sure there is a lot of pride in that.

I will totally take some of her points from this OT report to heart, and move on with some of her recommendations. What my main point here is that the professionals need to be careful in their language choices, in the subtle messages that are hidden behind some of their words, so they can empower us parents instead of make us feel more guilty than we already do. What I guess I am saying, is that the professionals need to be kind, firm and consistent.

Thursday, November 3, 2011

Two types of kids on the spectrum

Akila had two good days, she was pleasant to talk to on the phone both times yesterday. Today the director of the crisis home called and said the Psychiatrist thought we should put her back on the risperidone, on top of the topomax that was recently introduced. We decided to hold off awhile first, to see if doubling the topomax which we started on Monday evening helps.

Then tonight, she had a bad night. Just when you think something might be helping. On the phone around 5:30 or 6 pm, she was yucky. The around 8 pm I got a message that they had to restrain her. She was upset about something, started hitting, kicking and biting. Then she went after the staff with a butter knife (other ones are locked up of course). That's the Akila I know and love. I say that jokingly, but seriously also. I don't really expect her to stop with the extreme aggressiveness. I would like to be wrong, I would be fine with that.

Last night, while Dorothy, Julie and I were hanging out, we were talking about the two types of kids on the Fetal Alcohol Spectrum. We know that there are several diagnoses on the spectrum, FAS, ARND, pFAS, ARBD and others (I think that tons of kids with LD-Learning Disabilities and ADHD are on the spectrum also, if they were prenatally exposed to alcohol). But regardless of what their diagnosis is on the spectrum, there seems to be two types, maybe more, but two main type of kids- or adults for that matter. Not sure what to label the two types. Could be "Excessively Aggressive" and "Non-aggressive"; could be "Manageable" and "Unmanageable"; could be "Violent" and "Non-violent". There were a few other names we had for them, but they are only the type of names you can share among close girlfriends, if you know what you mean. We all need to let lose and vent after all.

It also seems, that the ones in the tougher category, the "Violent" category, more often have a higher IQ, whether they are FAS or ARND. This would be consistent with research that has shown that kids with ARND and higher IQ's, often struggle in life more. I was talking with another friend today of a ARND kid who has a lower IQ than Akila and struggles more with learning. She also struggles with behavioral issues, no doubt about it. But there is also more hope, and a sense that she will be able to have an "easier" future. Well, easy is the wrong work, but hopefully you know what I mean.

Right now, Akila is still a tiny little thing. She weighs about 90 lbs, and we are still able to restrain her (although I do have some good back pain that is aggravated very time). Watching her violence, her anger progress as she gets older, is pretty scary, and profoundly sad. It is so sad to see her full of anger, over the smallest of things. Today, she is mad because the school sent home the stupid fundraiser junk.

I should say, the really STUPID, rotten horrible fundraiser junk. I hate these things, even for my neuro-typical kids. I refuse to do them. I hate the way they pump the kids up for the limo ride, and all that crap. It is especially hard for families with more than 2 kids. But every time they send this CRAP home, it causes problems with Akila. She was mad and yelling on the phone. I told her to go ahead and sell some. Well she didn't know who to sell it to. I said EXACTLY!! I refuse to bother all my friends, family and neighbors with buying trail mix at twice or three times the price as it is at Target.

Anyway, I digress. She was mad, angry, and I am assuming this is what caused her rage. She has raged at home over wanting a certain type of cereal that we are out of. And before she gets to the point of raging, she often is consumed with anger for up to two hours, or even more. Last week during one of her rages, they documented that for 1 hour 45 minutes, she was angry about something, before they finally had to restrain her, which they call a hold. In the past 4 or 5 months, she seems to be angry 50% of the time, and that may be even less than it is.

It is sad. I think about how I feel physically and emotionally when I am angry, and it is horrible. To feel like that all the time, and to seemingly have very little control over it, that is sad. I might have to talk with the Psychiatrist about that next week- the constant angry state is what is making things really tough.

Kitty Kat Club

Julie, Dorothy and I went out tonight, it was great fun. We normally have been meeting in Elijah's hospital room, or in the apartment by the U of MN where Julie is having to stay with Elijah now. Tonight, Julie had a nurse on and we went out!

Today, I was trying to find a place where we could go out. I really wanted a coffee shop style place with comfie seating, but one that is open later. I was googling restaurants with couches, and places like that. I found a place in Dinkytown at the U of MN which is called the Kitty Kat Club, check it out- the pictures don't even do it justice and they look amazing!

It was the coolest looking place on the inside, we were stunned. There is a huge room with different seating areas with old couches and chairs, and antiques everywhere. We got there earlier than normal, 8:00 and it was great. Had some diet cokes and french fries (from Annie's Parlor- it is under Annies, and they share the kitchen and just get food from Annies), and good conversation. Until the band started. Then it got kind of loud, and we moved down the street to a coffee shop that is open until midnight. Then we got kicked out of there. So we ended much earlier than normal, often we hang out until 2 am or later.

It was pretty fun to get out and to be in such a cool place. The atmosphere was great, I'm sure it is different on a weekend!! It's just too bad the band chased us out!! I guess we should have just gotten up and danced, now that would have been entertainment for those youngsters!

Wednesday, November 2, 2011

Research study in Mpls area

If you live in the Twin Cities, Delve Research is looking for 6-10 year olds to do a market research study on Nov. 12th. It is taste testing Gogurt. It compensates $50 and they told me to spread the word as they need more kids. Call 952-858-1550 if interested. Zeke is going to do it (only 1 kid per family, and it is his turn).


I am post happy this morning. Not only did I do the training yesterday that has been keeping me swamped, but I stayed up past midnight (6th night in a row) to finish some dance work (needed to charge all of the customers for costume fees that were due Nov 1st, not the best timing since I wanted to come home from the training and veg!).

My friend Kari's blog recently went private, but she always has great posts, so I commented to her today that I am just going to have to copy and paste her info in my blog. She did some research on swearing and it's connection to the brain. Here is what she came up with:

Many studies suggest that the brain processes swearing in the lower regions, along with emotion and instinct. Scientists theorize that instead of processing a swearword as a series of phonemes, or units of sound that must be combined to form a word, the brain stores swear words as whole units [ref]. So, the brain doesn’t need the left hemisphere’s help to process them. Swearing specifically involves:

  • The limbic system, which also houses memory, emotion and basic behavior. The limbic system also seems to govern vocalizations in primates and other animals, and some researchers have interpreted some primate vocalizations as swearing.
  • The basal ganglia, which play a large role in impulse control and motor functions.

Swearing is connected to the limbic system and basal ganglia, located in the interior of the brain.

Interesting, don't you think? Living with a child who swears like a sailor, is no fun. I have gotten use to it, but it still drives me crazy!!! I work really hard to try and not focus on the behavior and to not react to it, and understanding this helps me with my patience. Gosh, alcohol does a real number on the brain!!!!!!!!!!!!!!!!!!!!!!

3 restraints

Akila has been having a difficult time the last few weeks. After going 7 weeks without needing to be restrained, she has needed to be restrained 3 times in the last 10 days or so. Her physical aggressions went like this:
  • Week 1:0
  • Week 2: 0
  • Week 3: 1
  • Week 4: 1
  • Week 5: 6
  • Week 6: 16
  • Week 7: 14
  • Week 8: 18
  • Week 9: 19
Around week 6, that is when a med change was made so that is why most people think the behaviors changed. I think that is a small part of it. Week 6 is when she started to feel comfortable with the situation. That is when she started to realize that she wasn't going to be coming home the next day. She still complains and wants to come home, but she knows that it won't happen until at least the next team meeting (team meetings are every 2 weeks).

She will be there until for sure Nov. 11, and possibly Nov. 29th. It is obvious to everyone that we need more time to work on the meds, and we also need to hire a PCA (it is pretty hard for a PCA to sit for 2 months with no hours, so the one I was hoping would have the most hours, can now only do one day a week). Email me if you're interested, or know someone else who would be.

Last night I brought Akila to dance. The transport of Akila is usually not fun. She has mainly been goofy on the ride back to the crisis home, which I can understand. The thought of returning there would make me anxious if I were her. Last night, she was goofy on the way to dance. I prefer it this way if we have to have some goofiness. She was babbling about how God would not be happy with Michael and I for keeping her at the crisis home. She was talking about how we always accuse her of doing things and said she never accuses us of doing things. "How do you think it would feel to be accused all the time," she cried. Eventually I stopped communicating with her. She was making no sense. This made her mad.

Eventually, she quieted down and after about 5 minutes of silence, apologized. She has been better at doing that lately. I hope that continues when she returns home. Being the skeptical mom who has been burnt so many times, it is hard to know if it is really genuine. I think she wants to come home so bad that she is thinking about that when she apologizes. But this is a huge step for her. Often, she is not able to think ahead like that.

On a really positive note, Friday is the end of the quarter and Akila is doing really well in school. She has 2 A's , 3 B's and 1 C-. I'm sure there might be some change by Friday, but that is what the online site says right now. That is amazing. I am very proud of her and told her so last night. She is very proud of herself also, as she should be!!!


I have been swamped the last week and I'm sure that you are all just dying with my absence. NOT! I did a training yesterday at Pathways Counseling Center for the adult forensics staff, the staff who work with adults, and mainly adult offenders. It went really well, but it was a challenging one for me. I'll tell you why.

These staff have already received FASD training and have a solid foundation of knowledge on FASD. This is due to the fact that the director of their program, Jerrod Brown, really gets it. Jerrod is the man who is pulling the Adult FASD Provider Network, he also has a Forensics Institute which is hosting the "Legal Aspects of FASD" training that I mentioned here. I believe you can still register and get 1/2 off if you give my name. The training is being done by a judge from Washington state.

Jerrod wanted the training I did yesterday to be on the FASD Family Impact. Sounds easy, right? I was tempted to just sit and tell endless stories of the craziness that Akila brings to our family, that would have taken way more than an hour though. But he wanted me to focus on things like domestic violence, child abuse and the potential connection to FASD. So I had to look at it from a different view, from the aspect that alcohol effected people can get into lots of trouble with the law, and how that impacts the family.

I had to use research of course, instead of just basing it on my gut. This is where the great challenge lied. There is not much research at all that I could find on FASD and domestic violence for example, so I had to make connections in a round about way. I found the "profile of an abuser", and showed the similarities between FASD behaviors. The hard thing about it all, is that when you are looking at things like this, it does not make individuals with FASD look very good. But the cold hard truth, is that we know that prisons are full of individuals with FASD. It is estimated that 60% of the prison population was prenatally exposed to alcohol.

While putting the presentation together, I struggled with this. But the good thing, is that these staff are caring and compassionate and are trying to help people, and they realize that a ton of the people they are dealing with are undiagnosed FASD. Again, the training went really well, and I feel good about the outcome. The one thing I would change, is that I needed to close with some more positive things about individuals with FASD but I ran out of time and spaced it out.

I basically spent about 5 nights in a row working til 1:00 am putting it together. I have done so many trainings in my life, but this was a new one for me. The basic and advanced trainings on FASD I have been doing, are all put together by MOFAS. I haven't had to put the powerpoints together, or do the research. Before I was doing it through MOFAS, I have done some other trainings on FASD, but they were much easier to put together. All of the trainings I have done in the youth work field, have also been much easier for me. I can put together a team building training in an hour. A youth leadership one also, but this was a bit harder. Especially due to the lack of research.

I found research on Autism and divorce. Down's Syndrome and divorce. Nothing on FASD and divorce. I found info on Down's Syndrome and how it effects siblings. Nothing on FASD and siblings. So I used some of this other type of research, and made the connections. I sure hope that there is a bunch of research currently underway on different aspects of FASD, as it is amazing how little is out there.