New job!

I started a new part-time gig this week.  I am the new Hennepin/Ramsey County Family Resource Coordinator for MOFAS (Minnesota Organization on Fetal Alcohol Syndrome).  There are nine of us that cover different parts of Minnesota, you can look here to see all of us.  The gig is roughly 10 hours a week and I am really excited about it.

I will be leading support groups, meeting individually with families who are struggling or want to talk, connecting with professionals and getting the word out about FASD in general.  So, basically, I will get paid a little bit for doing what I have been doing for years.  Yahoo!!!!!

If you haven't already registered for it, the MOFAS First annual Statewide Conference is coming up on November 1 & 2.  Info is herehttp://www.mofas.org/ai1ec_event/1st-annual-mofas-statewide-conference/?instance_id=4 and I will be there and would love to see you all!  There are a lot of great things going on at MOFAS right now.  Check out their website.

That's my girl!!

A couple of funny Akila stories.  I have always said, that I have to laugh at some of her and our adventures together, or I would be institutionalized.

Last week, I received an email that Akila had shown a staff her journal and in it she was talking of harming herself.  This also happened when she first went to the RTC last spring.  Obviously, this can be a serious issue, but I know that Akila is not suicidal- far from it at this point in her life at least.  Last spring, she had seen another girl get put on "precaution" after being suicidal, and Akila was intrigued.

I was not worried when I got the email, Akila has been in really high spirits.  I spoke with her case manager the next day who told me the part that made me laugh.  They did put her on a one day "precaution".  A staff was in her room taking out all things that she could use to harm herself.  They take almost everything.  The staff was taking her stuffed animals and Akila was mad and asking why.  The staff explained.  Then she was taking Akila's hoodie as it has a string in it.  Akila got mad, and walked away saying "This is too much work, it isn't even worth the attention".  That's my girl!!!  The staff person said she had to leave the room so Akila wouldn't see her laugh.

One day last week she also told the nurse she was pregnant so they had to administer a pregnancy test.  It was negative (praise the Lord!).  Funny part of this, is that although we have had the "sex" talk many times, she doesn't usually get it, or understand the part about how you get pregnant.  I asked her about it, and again, she heard another girl saying this and liked the attention.  That's my girl!

She is an attention seeker, she can't stand it when someone else is in the lime light at home or anywhere, even though she seems to get most of the attention (positive and negative).  Gosh I love her, she keeps me laughing.  That's my girl!~

Seizure disorders and FASD??

Hi friends, life is crazy.  I have several blog posts brewing, and I am going to get to them this week!!!  In the mean time, my friend Jerrod Brown has a question for you.

He is putting together some info on if there is a connection between seizures and FASD and he wanted to know if any of you had any comments on this, or experiences.  So comment away if you do, and thanks ahead of time!

Going to Wisc. tomorrow

I am leaving tomorrow to drive to Wisconsin to see Akila.  I will be staying in a hotel tomorrow night and Akila will stay with me.  Then on Friday morning, we will drive back to the Residential Treatment Center (RTC) for her 6 month staffing (mtg).  After the meeting, she will come home with me for a visit until Monday at noon.

I am really looking forward to seeing her.  Her August visit was the first weekend of August and this September is the last weekend of September so it has been a long stretch.  Her attitude has been increasing at the RTC.  She had a few weeks of whining and crying on the phone, but then school started and she has been really happy again.

We have had a very busy start to the school year.  Imani is playing on the freshmen volleyball team at our high school which is 5 or 6 days a week depending on if there is a Saturday tournament.  Zeke is doing football which is four nights a week practice and games every Saturday.  Kind of glad there is nothing Hezekiah is interested in taking in the fall.  :)

There is a ton of other stuff going on that I am going to write about soon, some really cool stuff.  But something really sad, is that Akila's county Placement Worker passed away suddenly last night.  I know he was married and had a 14 year old son.  Very sad.

Montana vacation

The first day of our road trip, we drove to the Rapid City, South Dakota area.  It was our first time, and we loved it.  The Badlands were particularly amazing.  We got out and did some climbing, I believe it is called bouldering.  That was a great way to start the trip out.  I really had no idea how beautiful and amazing the Badlands were, and they were my favorite part of South Dakota.  We saw Mt. Rushmore, and some of the touristy things, but nothing that compared to the Badlands.

We stayed the first night in Rapid City, and then drove to Red Lodge, Montana.  My friend, Lynne, is a Montana groupie and gave us a route that she recommended, along with recommendations of where to stay.  And boys does she know her stuff, thanks for the tips Lynne!!!  We stayed at the Rock Creek Resort in Red Lodge, and it was awesome.  It is right on the beautiful Rock Creek.  We had a balcony that overlooked the creek, and it was simply beautiful.

On the first morning, I got up early and hiked up the mountain behind the resort, and it was gorgeous.  After I returned, Michael had met Bill, the head of maintenance who was telling him about a trail across the highway that would run into an old shack, some old mines and a cellar.  We went on a hike with the kids and found all of the markers he told us about.  That also was fun.  We went into the cute little town of Red Lodge for some great lunch, and then stopped at the Beartooth Nature Center.  When we got home from that, I rented one of the resorts bikes and went for a bike ride.

The resort is 5 miles outside of town so I rode into town.  There is a town 6 miles from Red Lodge called Bear Creek which Lynne owns property in and had told me about.  The town also is the home of Montana’s largest mine disaster, the Smith Mine disaster, which killed 73 or 74 men.  I decided to ride there, thinking that would be about a 22 mile ride, which is about the length I have been doing home.  I knew this would be harder though, as there are mountains and hills EVERYWHERE.  I got into Red Lodge just fine, and took the turn to Bear Creek.  Immediately, I had to ride up a huge hill.  Over half way up the hill, I was thinking to myself, I sure hope there are not a lot of hills like this or I may turn around.  I got to the top of the hill, and came around a corner, and saw a beautiful landscape in front me that was all down hill.

Immediately, I knew I would have to ride back up it, and thought better of taking this ride.  Then I told myself, this is what you have been riding for all summer.  I went for it.  It was a gorgeous ride, complete with switch backs and everything.  When I was getting close to Bear Creek, I could see the old Smith Mine and there was a roadside sign with info which I stopped and read.  I got into Bear Creek, turned around, and rode up the hills.  It was hard, but amazing. 

When I was in Bear Creek, I had tried to call Lynne to see if I could find her property but had to leave a message.  She called me back just as I came into Red Lodge so I pulled over and we talked for about 10 minutes.  At this point, I have been biking for 2 hours.  I got back on the bike for the final 5 miles back to the resort.   Immediately, I knew it was not going to be fun.  I shouldn’t have stopped, the break gave my legs time to realize how hard they had been working and they were like jelly.  I forgot to mention that it had been in the mid 80’s.

These last 5 miles, were the longest 5 miles ever.  It reminded me of some childhood bike rides I had with my best friend Teresa.  We grew up on a lake about 7 miles outside of Willmar.  When we were in 5^th grade, we started riding our bikes into town for softball practice, or to just ding around.  I remember a couple of times riding home, and hitting some crazy winds, and wishing someone would come by and give us a ride.  This is how I felt in Montana.  The wind was picking up,, and even though I wasn’t having to ride up the steep crazy hills I had just tackled, I was not doing a lot of inclines and even on the declines, I was having to peddle full force because of the wind.

Obviously I made it back, and was totally fine.  I did have a water bottle with me which I finished.  The ride was 22.69 miles total and took nearly 3 hours, with a couple of breaks in it.  I had on my heart rate monitor and I burned 1500 calories.  Wahoo.  The next several days, I have to tell you, my butt was killing me!  Made me realize I need to work more hills into my bike rides, very good for the backside!

The next day we did something I was nervous to do.  We rode on the Beartooth Pass.  If you don’t know what this is, you should.  It is an amazing scenic drive through the mountains.  It starts right in Red Lodge and ends pretty much as you enter Yellowstone Park.  Charles Kuralt called it the most scenic drive in America, and it is by far the most beautiful drive I have been on.  A few years ago, Michael and I had a vacation in California, and we drove from San Diego to Palm Springs for a few days.  We took some back rodes to get there, and ended up driving on some roads that were winding through the mountains, and were freaking us both out.  Me especially as I was driving.  It was beautiful, but terrifying.  Due to this memory, we were both nervous for the Beartooth Pass.

I am a natural born roadtrip driver.  My dad was a travelling salesman (sold veterinary meds to farmers).  He could drive forever and was good with directions and knew his way around.  I inherited these talents from him.  Michael is not a great long distance driver.  He gets the highway hypnosis thing and has a hard time staying awake, past two hours.  So needless to say, I do most of the driving, and we are both cool with this.

Well, the Beartooth Pass was lovely.  It was not freaky at all, as they have guard rails almost the entire time when needed (the mountains we drove in California did not have guard rails).  There are tons of turnouts and spots to pull over to let someone pass you, or to look and take pictures.  We stopped at 80% of them to take pictures and enjoy the scenery.  You can get through this route in 1.5-2 hours, but it took us 4 hours.  We did stop to eat our lunch at one point.

When we came through the Beartooth Pass, we entered into Yellowstone National Park.  We were able to see bison, but that was about the only wildlife we ran into.  We saw the Grand Canyon of Yellowstone, and this was truly awesome.  It was gorgeous.

After Yellowstone, we stayed at a place called Chico Hot Springs.  It is on the national historic registry and it is cool.  It has two pools that are fed by a hot spring, 96 and 102 degrees I think.  We went horseback riding and white water rafting one day.  I also got to get a massage at the spa and Michael and I had a late night dinner at their renowned fine eating restaurant.  One day, horseback riding, white water rafting, massage and a fabulous meal.  Totally spoiled.  It was an awesome day.  The trip was relaxing and fun.  I fell in love with Montana and the mountains!

August update

I haven’t blogged in awhile, I haven’t blogged much this summer.  As I wrote earlier, I have kind of been on vacation this summer, in many ways.  I have been riding bike, going for runs and hanging out with the 3 kids.  Akila has been coming home once a month for a home visit, they have gone well.  It is much easier than driving 4 hours to visit her and being stuck we have in a small town with little to do.  Plus, the RTC drives her to the cities and back, so it saves us money.

When she has been home, the visits have gone smoothly.  It is obvious that we are still dealing with the same behaviors, even though we have not had any major explosions.  The first two visits were two nights, and the 2^nd night, she was starting to get sassy and mad about little things.  When Imani wouldn’t play with her, she stomped on my feet and pushed me as she raged about what a horrible mother I am.  But all the rest of the time, she was lovely.  Her August visit, she was here for 3 nights, but it was her birthday weekend so she was very happy with all the attention.

Her behaviors just in the past few weeks have started to accelerate at the RTC.  She punched a staff in the stomach and has been starting to show a lot more attitude.  It took her 5 months to get to this point, and she is still a mellow version.  At first, I was not excited about the RTC option.  But I have learned something through this experience.  The RTC offers the exact level of structure she needs.  More than a group home can offer, and certainly more than our home can offer.  She has been thriving there.  I know I wrote about this in July, but I just have to say it again.  I also know that many people who have children with with FASD or other issues, have not had good experiences with RTC’s.  For some reason, it has been great for Akila.  I am so grateful for this.

We have been doing things this summer which have been harder to do or impossible when Akila is home.  One thing we did, for the first time, was go on a family vacation/road trip.  Travelling with Akila has always been hard.  She is difficult in the car, and tries to dominate and dictate activities.  We always have to work around her, and it is hard on the other 3 kids.  I remember several years ago, on spring break we were going to the Mall of America to go to Nickelodeon Universe.  Now, you have to know, that we only live 25 minutes from the MOA.  As we were driving there, Akila got mad at Zeke over something piddle, and she smacked him.  She smacked him hard enough that he got a mammoth bloody nose and I had to pull off of the highway and clean up blood, and it took forever for it to stop.  He was really freaked out (I think he was 5 or so).  The kids didn’t even want to go anymore, as Hezekiah and Imani were also freaked out.  We did go, and it went fine.

But when we go to Willmar for the 4^th of July at our friends, it is always tense and the other 3 kids don’t really get to do what they really want to do because of Akila’s behaviors.  So, this summer, we decided after much prayer and deliberation, that we would take a road trip without Akila.  That might sound like an easy decision, or it may sound like a hard one.  It was both.  It was a no brainer, yet, it was hard.  Just like her current placement, it feels right and wrong all at the same time. 

So, we went to Montana for 5 days and stopped in South Dakota in the Black Hills for a night on the way.  It was a totally awesome trip, I am writing as we drive home through North Dakota.  I will do another post with pictures from the trip.  I was not sure what Akila’s response would be when I told her, but it was a good one. 

When she was at the crisis home last fall, she cried and begged to come home the entire 3 months.  On the phone, when she heard about something we were doing, she would get mad and whine about it or cry.  We stopped telling her what we were doing.  I was using the same approach when she first went to the RTC.  Then I tried telling her about some things we were doing, and she was genuinely happy for us.  Even when I told her in July that we were in Willmar for our annual lake stay, she was happy.  This is another sign to me of how well she is doing at the RTC, and what an appropriate placement it is for her.

But I wasn’t sure if this trip would be something that would make her mad or sad.  I told her, and she was truly happy.  I have called her almost every night, and she has not whined or cried about it.  She did one night say, “Next time you go on a trip, can I come with?” That stung right through the heart, as there have been a million times on this trip that I have wished she were with as I knew she would like something we were doing.  She has spoken with the kids on the phone, listened to what they did each day, and had really appropriate responses to them.

I am very grateful for this opportunity to travel with the three kids and Michael.  I am sad that Akila was not with us, but I am also aware that it needed to be this way.

Akila update

I sure have been on an extended vacation, haven't I?  I think that I am trying to pretend that I have a "normal" life, whatever that is.  I have truly been enjoying this summer and the bit of respite that we have while Akila is in the RTC.

We have been seening her once a month.  Last week, we had our first overnight visit.  She came home for two nights.  The first evening, was great.  The second evening, was a little rough, but nowhere near the intensity that she usually attains.  But if there was one or two more nights, it would have gotten very rough.  As it was, she was cursing, calling names, stomping on my feet and throwing things at me.  One more night and she probably would have gotten more violent.

She continues to love it at the RTC, I mean she really loves it.  On the morning I was to bring her to meet the van for the ride back to Wisconsin, she was not scheduled to leave until noon.  She was ready to go at 9:30 and was mad that she had to wait.  I was really trying during this visit to not have it crammed full of activities and to have it focus on her.  All the previous visits have, which has been great.  But I wanted to see how she could handle just being home, and not have constant stimulation and attention.  It was as I expected.

Don't get me wrong, it was awesome to see her, I truly miss her as does the entire family.  It is just that I think that the RTC is thinking since she is doing so well, she is ready to return.  Well, I can guarantee you, nothing has changed.  She has had plenty of verbal aggression and major attitudes with the staff there, and physical altercations with some of the other residents, but that is it.

She is absolutely thriving there, and this is why I think she needs to stay longer.  We know that it takes a lot of repetition for kids with FASD to learn something, this is obvious by some of the neuro-psych tests that show deficits in working memory and areas like that.  I think that she is in the most optimal place right now for some of the therapy and anger management stuff to possibly sink in.  She is not constantly angry, being restrained.  She is the happiest I have seen her in 4 years and I believe this puts her brain in the best place for stuff to actually sink in.

I am praying that she will get an extension.  I was not that excited about the RTC option 4 months ago, and I was wrong.  It has the exact kind of structure that she needs to be successful.  As a matter of fact, as I have been watching, praying, reading, exploring, I think that this is the kind of environment that she needs long term to be successful.  She raged and struggled in the crisis home, which is similar to a group home.  She raged in a respite home.  She certainly rages in our home.  I think that the smaller, familial environment, is one that is harder for her to feel comfortable in, even when structure is added.  I have tried to add structure to our home, but cannot attain the level of structure that she needs.

I struggle with the notion that she would be herded out of the RTC because she is not acting totally out of control.  This is why she needs to stay longer, because she is thriving.  But she looks so good on "paper".  I know the RTC is not a permanent placement, but does anyone know of a more residential school type of setting in our area?  I know of a family in Arkansas who have a child placed in one that is in Florida, and I know of a New York family who have a child placed in one in their own state.  Both of these kids are similar to Akila, and have had several failed placements, and are thriving in a residential school/institutional type of setting.  I think that Akila loves the social aspect of it, it is a little similar to dorm life, but very different!

It is interesting to look back at the emotions that were tearing me up on deciding to do this placement.  It was hard, really hard.  It is still hard.  It is very unnatural to not have your child living with you.  I absolutely hate it.  But what is great, is that I can now enjoy her again.  I love talking to her on the phone, and I love our visits.  We are not constantly butting heads.  It brings joy to my heart to hear her so happy.  I know that this is God helping my heart to feel at peace.

We have been enjoying our summer immensely.  The kids have been doing some day camp programs, we have been hitting the beach.  Michael got me an inflatable kayak for our anniversary last week and I am loving it!  Have always wanted a kayak.

Disability Training date

I guess a date would be helpful. Friday, July 20 from 8:30-12:30.  The training is open to anyone.

Developmental Disabilities Training

My friend Jerrod has a great training coming up in July through the AIAFS, it is called the Forensic Assessment of Developmental Disabilities.  Don't let the title scare you, these two trainers are FASD experts!


Natalie Brown is a licensed psychologist in Washington State and Florida who specializes in forensic evaluation of individuals with developmental disabilities (e.g., fetal alcohol spectrum disorders) and sex offenders. Dr. Brown is the founding Program Director of FASD Experts (www.FASDExperts.com),
a multidisciplinary group of professionals that conducts forensic FASD evaluations throughout the US. She is a faculty member in the Department of Medicine at the University of Washington, where she consults with the Fetal Alcohol and Drug Unit on secondary disabilities and conducts research on suggestibility and FASD. Dr. Brown has published numerous articles and book chapters on FASD and conducted trainings for criminal justice and mental health professionals nationally and internationally.

Paul Connor, PhD, is a neuropsychologist specializing in the assessment of adults with developmental disabilities such as Fetal Alcohol Spectrum Disorders (FASD). He is a Clinical Assistant Professor in the Department of Psychiatry and Behavioral Sciences’ Fetal Alcohol and Drug Unit (FADU) at the University of Washington and maintains a clinical and forensic private practice. He has authored or co-authored over 14 peer-reviewed manuscripts and three book chapters focusing on neuropsychological, neuroimaging, and psychiatric implications of the long term effects of prenatal alcohol exposure into adolescence and adulthood.


Training Description
This training course will focus on forensic assessment of developmental disabilities. This course will also include information on challenges in diagnosis and how to overcome those problems. Participants can expect to learn about the kinds of testing necessary in diagnosing a developmental disability and how to interpret and apply test scores to diagnosis in a forensic setting. Attendees will learn how a neuropsychological evaluation can be successfully utilized to identify developmental disabilities, as well as provide data critical for applying and obtaining services. This course will also address how neuropsychological testing can provide objective data about adaptive functioning, addressing concerns about potential bias from informants who are interviewed about the client’s day-to-day functioning.

Training Objectives
1.Understand the importance of standardized assessment in forensic assessment of Developmental Disabilities.
2.Learn how test results inform forensic opinion.
3.Understand the importance of treatment "planning" in forensic assessment.
4.Determine the referral issues that will guide forensic assessment and testing.
5.Learn how to present large amounts of complex testing data in a fashion that allows for easier understanding.
6.Understand how to confirm potentially biased adaptive functioning reports with objective testing.

If you are interested in attending, email me and I will email you the registration form.  The cost is $55 and it will be held at a Holiday Inn in St. Paul.  I am planning on attending!

Decompressing & scratching

I think that our entire family has been in decompression mode for the past nearly 3 months since Akila left for the Residential Treatment Center (RTC).  The end of May and first week of June got out of control busy for me and that was crazy.  This is the first week of summer vacation, and we are enjoying it so far!

The kids have all had friends sleep over and have been playing like mad.  The cleaning and projects are going to have to start up soon.  I have also been working on getting more healthy (I started a few weeks before Akila left) and have been spending 1-2 hours exercising each day.  Also have been charting my calorie intake and exercise intake on a program called myfitnesspal which I highly recommend.  It is basically like Facebook for people trying to lose weight.  You log your food, your exercise, and encourage your friends.  It is great, let me know if you want to try it and we can be fitnesspal friends!

As I try to earn more calories to eat each day, I have been going for a lot of bike rides.  I rode my bike to Children's Hospital yesterday for a meeting, 10 miles each way.  Very doable, and I burned over 800 calories, works great!  I have lost 22 lbs so far, and have another 20 to go, but it feels great.

I have been meaning to blog about our visit with Akila, but I need our other computer where the pictures are and the kids are on it every time I think of blogging.  So I will someday.  Our visit went very well, and she is coming home next Tuesday for a 4 hour visit.

She called me on Tuesday from her therapist's office.  This is only the 3rd time she has called us, as we call her at least every other day.  We had a great chat, and at the end I asked her what she has been working on with the therapist.  She started to mumble.  I asked her to repeat her phrase several times.  I thought I was hearing the word "farming".  I thought maybe they were going to a farm this summer and learning some ag stuff.  Then she clarified, she was saying "harming" myself.

I have known for years it is only a matter of time before Akila starts to cut.  Cutting is all the rage these days with kids and teens who are emotionally struggling, and Akila is the type that will do it if it is something she thinks is cool or will make her look cool to a certain group.  She also somewhat likes the sensation of pain, demonstrated with her love of shots.  This is the girl who likes shots and smiles while she receives them.  Seriously.  I also am aware of the fact that Akila is going to pick up some behaviors at this RTC that she did not know of before.  She has never really heard of cutting before.  So I have been expecting cutting.

I asked her how she was harming herself.  She said she was scratching her arms.  I asked her who she saw doing this.  She said no one.  I asked her who else was doing this and she said "I don't know".  I didn't make a big deal out of it, and we were done shortly after with our phone call.

About 10 minutes later, the therapist called me to follow up on what she heard Akila telling me.  She said she got a peculiar note from Akila that day, the first of it's kind.  That's Akila, she likes to be the first.  It was from Akila, and it said that she wanted to be put on "precaution".  This means that you are watched more closely, for self injurious behaviors.  Your door has to always remain open, they take away shoe laces, spiral notebooks, things that you could harm yourself with.  One of the girls Akila has connected with was put on precaution the previous evening.

The therapist said that if Akila did "scratch" her arm, she did it so lightly that it was not noticeable at all.  I knew from Akila's word choice, "scratching" instead of "cutting", that she didn't fully understand it and that it was an attention seeking thing for sure.  The therapist and I agreed on this.  For the most part, Akila isn't sophisticated enough or mature enough to really figure it out at this point.

She continues to love it at the RTC, and is still doing well.  She did have an incident where she pushed a girl a few weeks ago, and last week hit a girl.  That is the most aggression she has had.  I do pray that her scratching does not escalate to cutting, but I am prepared for it if and when I get that call.