Vikings Game & Imani

One more thing before I go to bed.  Imani will be leading the Vikings out of the locker room at tomorrow's game against Detroit- how cool is that!?!  A different patient from Children's Hospital and Clinics is doing this at each home game, and they asked if Imani would do it for tomorrow.

We get 4 free tickets (Zeke is at his cousin's house this weekend), free parking, free pre-game sideline tickets, vouchers for food and she gets a few gifty things too.  Looking forward to it, I am a Vikings fan and really enjoy the games.  They have been stinking the last few games, but I'm sure they will put on a good show tomorrow after being led out of the locker room by such a beautiful child!

She will be riding on an ATV with Victor the Viking, or something like that.  She has to wear a helmet, which she is not pleased about.  Have I mentioned lately that she is 12, and she acts like it?  Pretty sure that they don't show this part of the pregame on TV, but maybe check it out to see if they do.  Our tickets are close to the locker room entrance/tunnel thingie.  Should be a blast.  Skol Vikings!!

New worker

Over a month ago, our social worker passed away.  I was very surprised, and very sad for his wife and son. I didn't know him super well, but he was a very nice person with a lot of experience who we got along well with.  I have been nervous since his death, having to get a new worker is always nerve racking.  Especially with our current situation, and not knowing what lies ahead.

Akila has started the last two or three weeks to get violent at the RTC.  Took her 7 months to get comfortable enough.  I should not be shocked at that, it took her nearly 10 years at home.  She is still super happy, positive and upbeat.  It still feels icky, crappy, yet right for her to be out of the home.  I struggle just writing that.  Right is not the right word.  Ha.  Well, it is and it isn't.  Just the hardest thing in the world to describe.

We know that we have tried everything possible to make it work with her living in our home.  She just can't stop the violence and it is too hard on the other 3 kids.  I absolutely hate the emotions that go along with this situation.  We know that it is better for her, and for the other 3, for her to be placed out of the home.  And with this knowledge, we have this underlying anxiety that the county is all of a sudden going to pop her back in the home.  We know from experience, that it takes less than a week for her to get out of control again.  This is part of what makes us anxious about this possibility.

I met our new worker this week.  She is amazing.  She asked me what I would like in a social worker.  Wow, that threw me.  What a great way to start the meeting.  I rambled on and on.  Probably scared her, but it didn't seem like it.  She has a personal interest in FASD, has since college.  Has a lot of kids on her case load with FASD.  Knew more about it than any other professional I have ever met.  I was stunned.  I instantly felt some of my anxiety letting loose inside.

She had not met Akila yet (she did yesterday though), but already had a better feeling for her than any previous worker.  Akila is approved through January, and I asked what the next steps are.  She said she already knows that she would like to ask for another 5 month extension.  More anxiety melting away in me.  I then told her, that Michael and I have come to a point where we know that it is not in her best interest to live at home anymore.  I told her this has been a horrific decision to come to, and that it has taken years.  So, I asked what happens at the end of the RTC stay.  She said she would be working on finding the appropriate group home placement.  I was stunned.  Now things can always change, but the fact that she knows this is in the best interest of Akila and our family at this time, is huge.  Super huge.

Now, I know that it is possible that Akila could get better, but only with an intervention from God.  Seriously.  We have tried every human option to help her improve behavior.  It is in God's hands if He so chooses to heal her brain and the storm that brews inside of it from time to time (more like from hour to hour).

I can tell you, that this social worker is straight from God.  I have been praying for 4 weeks for a worker who understands FASD, is experienced, and easy to communicate with.  The Lord answered my prayers and then some.  And wow, what a difference it makes to work with a professional you trust, and have confidence in.  The amount of anxiety and fear that have been alleviated, is amazing.  It has given me hope, and again, all this is to the glory of God.  Only He could have worked this out like he did.  And the timing was good also.

So, this has been a good week.  I will not lie, it has also been hard.  Make up your mind Barb!!  I learned many years ago, that when it comes to raising a child with FASD, the feelings are rarely clear- it is almost always a mixed bag of emotions that comes with most of the situations we find ourselves in.  Like I can't wait to see her for Thanksgiving, but I am not excited that it will be 5 nights in a row.  This is going to be hard, and we would love some prayers.  Back to the first two sentences.  It has been good to find out some answers, and know a little more of what will happen in the next few months and year.  But it also has made it more final.  As much as we know it is not safe for her to live home full-time, there are days when I think we could do it.  There are many days when I long for it.  But I guess I long for a lot of things I know are not right.  Back to that word again.

So, if you are a praying person and feel led, thank Him for providing for Akila and our family.  Thank Him for his wisdom and the fact that He never leaves us, even when we are weak and full of anxiety and fear.  Pray that He would work out the details of her next placement, and that it would be in close proximity to us.  That she would be able to go back to her school that has been such a good fit for her.  These are my prayers.  I also thank him for stunning me.

Great resource

I just saw this resource today and I have been reading it for awhile, and am very impressed.  It is for educators who are working with our kids with FASD.  This is a huge need as one of the number one issues I hear from parents is frustration with the school.

We have been blessed with our school situation as our school team has been wonderful and patient with all of our unique issues we have had over the years.  I know this is rare.  FASD is something that is not covered in the education of our teachers, and rarely for psychologists, pediatricians, therapists, etc.  It is a huge challenge to find professionals who understand FASD.  Today I talked to a parent who has a great therapist who didn't think pursuing the diagnosis would be helpful.  This drives me nuts.  But I am not going to blog about that- again.

I am really looking forward to the MOFAS conference tomorrow, and meeting many of the parents I have talked to this past month.  Tomorrow marks the one month anniversary of my new job as the MOFAS Family Resource Coordinator (FRC) for Hennepin and Ramsey County.  Ten hours is not enough, I can already see that!  I have met individually with 7 parents, and spent time on the phone with 4 more.  Had a great one plus hour phone call today with an amazing mom.

I am so glad that MOFAS has these FRC positions and some of the resources they are offering now-a-days.  Seven years ago when we first started on this journey (or I should say, realized that we were on this journey- we have been on it for 13 years!), I couldn't find a support group through MOFAS.  I tried to start one up in partnership with them even, but it never really got off the ground.  Then I went to a training that Kari put on, who I now consider a friend, and started to read her blog.  Then I started this blog.  Then I started to make new friends, moms with children with FASD.  It took awhile, but I started to have hope, started to learn new strategies, new approaches.  Felt support during some of the darkest times.  We are not done in this journey, we are not done with the dark times, or the bright times, but I feel very blessed to be able to share my experiences and resources with other parents- and to learn from them as well.

MOFAS Statewide Conference

It is not too late to register for the MOFAS Statewide Conference which is next week, Nov. 1st and 2nd in Bloomington, MN.  Check out the info here.  I will be there and would love to see you or meet you.  I believe there may even be a few scholarships left for parents, if you are interested, let me know.

When I first started this journey 7 years ago, I was desperate for info/trainings/workshops/seminars and stuff like this.  There was not as much as there is now.  This conference will not only be jam packed with good information, but it will also be a great time to network, find others, get support.  At the end of the day on Thursday, there will be the opportunity to split up by regions, and even go out to dinner together.  Please come, and let me know if there is any way I can help you get there.

My new email for my MOFAS Family Resource Coordinator position is barb@fasdfamilyresource.org and I would love to hear from you.

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.