Recovery

I think I have been in blog recovery.  Not sure I am out of it yet, but I am giving it a shot.  I have been using Google Reader for years to follow everybody's blogs and they shut it down this summer so I have not even been reading people's blogs.  Again, I think I have been in recovery.

I also have been super swamped with my job at MOFAS.  I have met some amazing families and I really enjoy working with them.  There is such a huge need, so many families struggling.  I had three main jobs in the youth development field before we started our family.  I loved all three of them.  I love working with teenagers.  And I absolutely love being a Family Resource Coordinator at MOFAS.  I never thought I would find a job in a different field that was a better fit than youth work.  I think I was wrong.

I so wish there had been someone I could have called when Akila was 6 and we first realized she had an FASD.  I called MOFAS at that point and didn't get any support.  It wasn't until I went to a training that Kari was leading that I actually met somebody else who lives this life and understands the dynamics we deal with daily.  She was the one who helped get me into blogging and took several desperate phone calls from me over the years.

I feel that I am now doing that for other families.  I don't always do it right.  I don't always say the right thing.  I don't always have the answers they are looking (rarely do I have the answers as a matter of fact).  But most of the time, just being a parent living the same type of life, makes a big difference.  Last night was one of my new support groups that meets in Eden Prairie.  We had 6 moms at it.  It was energizing.  It went great.  They were super supportive of each other.  It felt right.

Akila had a pretty good spring and summer.  She is in 9th grade.  She is struggling.  Normally, she does fine each school year until November when she starts to feel comfortable and her behaviors start up.  This year, the behaviors started up the 2nd week of school.  I think the pressure of high school is hard for her, and for the first time, she is dealing with anxiety that we have never really seen before.

My heart is breaking.  If I had the energy and the courage, I would try to start up a charter school for kids with FASDs.  The majority of our kids are too high functioning to fit into the pull out special ed programs.   They get eaten alive in the typical high schools if they are mainstreamed as they are so vulnerable and get sucked into drugs, alcohol and all things icky.   Akila is in a small high school where it would be more difficult for her to fall between the cracks.  But the downside is that there are not enough students to offer different levels of math, or other subjects.  She is having to sit through the regular 9th grade geometry, and biology for example.  She is actually doing better grade wise in those two classes, as she has some individualized help.  She is bombing English, as she doesn't have extra help.  We are working on that, but high school is going to be hard for her.

Imani, Hezekiah and Zeke are all doing great.  We had a nice summer full of adventure.  Our bummer news is that the company Michael has been working at the past two years relocated to Texas, so he is unemployed (as of mid August).  Job hunting is never fun.  Hope all is well with all of you.

The Croods

Akila was home for the Easter weekend.  She did pretty well, a few bumps here and there, a lot of riding on the fence, but all in all, a blessed weekend.

We did go to see the movie the Croods which was a funny movie.  My favorite part was driving home listening to the kids talk about it.  The main character, Eep (have no idea if I am even close on the names or not), was a girl who climbed everything and was fearless.  As we were driving, the kids were saying she was like Imani.  Makes sense, Imani is a crazy climber.  They were saying Dad is like the dad in the movie, as he was protecting his family.  Made sense.

Then, Akila said she was like the baby in the family because she bites.  I looked at her, and burst out laughing.    The baby girl in the movie was fierce, attacking, and biting, and was a fearless spaz.  Akila laughed, and for the next 30 minutes, talked about how she was the baby in the Crood family.  We laughed about this together.  Not inappropriately, she did not feel bad.  We embraced something that she recognizes in herself.  I told her that we love her, even if she is a girl who bites occasionally and acts like a total spaz.

I was impressed that she recognized this within herself.

Catching Up

I have five blog posts that are in draft form that I have started and not finished over the past several months.  It has been hard to blog.  For several reasons.

Akila finished her time in the Residential Treatment Center (RTC) on February 15th.  She moved into a group home 15 minutes from our home.  It is wonderful to have her closer to home.  We spend time with her as a family twice a week, and I have seen her more than that with Dr. appointments and from giving her rides after school as we waited for the school transportation to be set up.

It has been going pretty well.  She had about a 7 month honeymoon at the RTC.  It took her that long to get violent.  I have been saying for almost a year now, that the RTC is the exact kind of structure that she thrives in.  She did really well there.  Many kids do not.  She did.  It took her just under a week to get violent at the group home.  A short honeymoon.  More typical of her.

It is a great group home.  Group homes just don't have the same level of structure or a similar atmosphere that the RTC had.  The other challenge, is that I think one of the reasons that she was successful at the RTC was that her social needs were being met for the first time in years.  The two other girls in this home (there is an opening, so there will be 4 girls), are much lower functioning than Akila.  This was one of my questions when we first heard about the home.  At that point back in December, there was one girl remaining (several girls have just aged out), and she was closer to Akila.  That girl just moved out.  And the other two spots were filled with very nice girls, just ones that Akila is going to most often have a hard time relating to.  This really bums me out.  We will see how it goes after a few months.

She was really excited to move into the group home.  She is not too excited about it anymore.  It is a hard thing to get use to.  A sign of how good of a fit the RTC was for her, last week, she asked for their number and she called and talked to some of the staff.  She misses it.

She is back at her same school and I am really happy about that.  She also started back at the dance studio and she is super pumped to be taking hip hop for the first time.  She has always wanted to do hip hop, but it was on the wrong night in the past.  We found out that her hemoglobin is all out of whack and she has been started on iron supplements.  It was at 8.2 which is extremely low.  She has been feeling tired and dizzy, which makes sense with such a low iron level.  We are assuming it is menstrual related.

Emotionally, it has been kind of up and down.  We know that she cannot live at home right now.  She is still too violent and the other three kids are still recovering from the past few years.  But it still feels icky to have her not living at home.  Still feels so right, but so wrong at the same time.  Probably always will.

My job at MOFAS has been going really well, I truly enjoy the job.  It has been great to connect with families who are living with FASD and need some support on this journey.  I have been absolutely swamped, but in a good way.  Yesterday, I spent the day at the Minnesota State Capitol for the annual MOFAS Day at the Capitol.  We had a rally and then people met with their legislators.  I met with our State Senator and he agreed to help me bring some stakeholders in North Mpls together to tackle FASD.  Wahoo!!!

I have been meeting some really great people.  Professionals, adoptive families, birth families, kids and I am so impressed with all of their passion.  I had a brilliant moment last week when I helped provide the childcare at a seminar we held for parents.  We had 6 kids with FASD in the childcare, 5 of them were 8-10 year old boys.  Need I say more?  It was wild.  And I brought the game Operation.  What was I thinking?  I wasn't.  Obviously.  With their impulsivity, and sensory issues, it was not fun.  Had a hard time getting it put away and out of sight.  They kept finding it.  The kids were all really cool kids, just a little crazy having them all in the same room (tiny room), for 2 hours!

Imani, Hezekiah and Zeke are all doing great.  Imani is in spring volleyball, Hezekiah has been in a Saturday tennis program all year long, and Zeke just tried out for baseball.  Baseball is going to make the schedule really busy starting in mid-April, if stupid winter would ever leave!!!!!

God's timing has been good again in all that has happened in our lives.  There were so many details for getting Akila closer to us.  There were funding issues, school admission issues, school transportation issues and tons of other details.  He was in them all.  God is good all the time.

I will try not to wait 3 months to blog again.  I have missed you all.  :)

Preparing

Akila comes home tomorrow at noon.  For five nights.  Most of her home visits have been two nights.  Twice it has been three nights.  Two nights is good.  Three nights gets a little rough.  Praying five nights is not super rough.

Because of the extended home visit, we are in preparation mode tonight.  Going through Akila's room, cleaning.  Akila proofing the house.  Had the kids clean up their rooms and get everything out of sight that they wouldn't want her messing with.  Having to hide some things in the basement (summer clothes, hand me downs that are too big for her or Imani still, etc.).  Trying to prevent/avoid as many power struggles as possible.

Had long conversation with the kids tonight.  Talked about if we say it is bedtime, there is to be no arguing or junky comments, like "What?  It's too early!", "Why do we have to go to bed now?", etc.  And it usually isn't even early, just not late.  They think that if there is not school the next day, that they should get to stay up late.  And we do allow this many non-school nights, when Akila is not home.  But schedules are important for her, and so they need to adjust when she is home.  It is a small concession to make for having her home.  Had to help them see that tonight.

Also talked with them about what to do when she is wanting them to play with her, and they are either done after having played for awhile with her, or they are not in the mood to play Barbies- which is about the only thing she wants to play.  And you have to play on her terms when she wants you to.  I told them that I expected them all to play with her on and off throughout her visit, but that it is OK to say no sometimes.  This usually means that she is going to get upset.  Quite upset.  We talked about that when they have said no, and she is not taking no, to start walking to where ever dad or I am in the house, so we can intervene before she gets too upset.  Sometimes we don't know this has been taking place until she is in the red zone.

We also made a hand signal that Michael or I are going to do if the kids are pushing something an just need to close their mouths.  This happens a lot especially with Zeke.  For example, at the dinner table, he will get mad about some piddley thing, like Akila has insisted on sitting in the chair that he thinks is his.  Or we will be letting her choose the restaurant after church and he will get mad about this.  In the past few months, we have given him the look and changed our tone of voice, and he is slow to catch on.  Hezekiah is also.  But we talked about the hand signal, and how they also shouldn't be obvious and start being pouty.

Talked about is it ok that she gets to choose the restaurant?  Really, when she hasn't seen us or been home in over a month, are we going to get upset about that?  I mean, I get it.  She has ruled the family for 12 years, and they are just starting to breath.  But there is still compassion that we are trying to teach them.  And for the most part, they are totally amazing in how they deal with our unique family situation.

We are all struggling with the mixed emotions that come with the situation we are living in.  We are all genuinely excited to see her tomorrow, but to be honest, we are all dreading it at the same time.  I know this is due to our own sin, and lack of trust in God and His plan.  We shouldn't expect issues.  We shouldn't expect difficulties.  But if we don't, it hurts even more when it is smacking us in the face multiple times a day. It is a protective factor that I have acquired.

Despite all of this, I have so many things to be thankful for.  I am thankful for my family, for Michael and all 4 of my kids.  I am thankful for God's provision in our lives, for the RTC that Akila is staying at currently.  I am thankful for my new job that I am absolutely loving.  I am thankful for Kathy, my neighbor/mom whom I would be lost without, I am thankful for the rest of my family who are understanding and accepting of my entire immediate family, I am thankful for my friends who have been there for me in the last year or two while things have been rough, I am thankful for my church and some exciting possibilities that are happening to support families with children with FASD, and I am thankful for my God and His steadfast love and grace that He shows me daily.  Love and grace that I do not deserve.  Love and grace that only He can give.

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.

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.

Swampola-ed

I have been swamped.  Last week, I did one FASD training for a group of school social workers and two panel speaking events, on top of a zillion other meetings and appointments.  It was a busy week.  This week, I am doing a LEAN event at Children's Hospital Monday-Friday, 8-4 each day.  It has been a crazy couple of weeks.  For the training I did last week, I had to put a good amount of hours into developing the PowerPoint, and I lost an entire afternoon/evening to a migraine (first one I have had in a year- not bad!).  Oh yeah, and the dance recitals are next weekend, so my dance work is in full swing.

We are going to visit Akila this weekend, just a day visit, not staying overnight.  I am looking forward to it.  She has been there 8 weeks, and she absolutely loves it, still.  I even said to her on the phone last week, "So Akila, are you liking it there?"  She said yes immediately and I asked if she was having fun.  She said yes again.  And when she says yes, it is full of enthusiasm.  Not once has she asked to come home, or complained about anything there.

Her case manager says she is one of the better girls they have, which is great.  It honestly has made my emotional roller coaster a more smooth ride, knowing that she is not mad, or struggling with this placement.  It also has not made me feel bad that she doesn't miss home, or want to come home.  It has only reiterated to me that she has significant brain damage.  No typical child would want to be where she is, or would actually enjoy it.

What this has shown me, is that this is the exact kind of structure she needs.  I remember Bonnie Buxton talking in her book, Damaged Angels, about how well her daughter did in a placement that had a ton of structure, I think it was a farm or something like that.  But she could only stay there a year or just over and after she left, went downhill right away.  When Akila was in the crisis home last fall, she still struggled even with the level of structure that they had, which is very similar to a group home.  She still raged.  At this Residential Treatment Center (RTC), she has not been violent or raged once.  She has had plenty of verbal issues, but no raging.

I am so curious to see if this will continue, or if she is just on an extended honeymoon phase.    Meanwhile, I am swamped.  Can't tell you how relieved I am to not have to deal with raging during this really busy few weeks.  I am swampola-ed.

Not again

My heart is breaking for my 3 kids at home right now.  They have been enjoying being able to play outside in the neighborhood without a ton of drama from Akila.  They have played outside all afternoon each nice day until bedtime, except for homework time and meal breaks.  But things have changed slightly, again.

I have written many times about our next door neighbors.  There is a girl with FAS who is fairly low functioning, she has now turned 18.  She left the home last April after one of many episodes over the years, which included my kids.  Imani had been outside playing with this girl and her younger sister.  The younger sister got jealous, and the two sisters started arguing.  The older sister got mad and went into a rage.  I ended up having to help, it was a very ugly situation.  I had a TV thrown at me, she tried to attack her sister as I was chasing her, it was not pretty.  The police were called, and she went to the hospital.  It was at least her 20th time at the hospital that I knew of.

Shortly after that, she went into a crisis home.  The county has been struggling to find the right group home placement for her, she is very hard to staff.  She was in the crisis home for over 6 months, as they tried to find something.  Then she had an incident on the school bus which landed her in the hospital again, without the possibility of her going back to the crisis home.  She moved home two weeks ago.

Imani told me several weeks ago, right after Akila left, that the younger sister said the older sister was going to move back home.  Imani said she was nervous about this, and made a comment about how hard it is, now that we finally have some peace at home, and that now she would have to face this stress.

The sister came home, but she has a lot of services.  She is receiving staffing through the State Operated Services program of the state of MN, which is evidently what is used for the extremely difficult.  She has a minimum of 2 staff working with her at all times, even overnight.

The challenge is, that when Imani plays with her once, the girl gets obsessed with playing with her and expects to every day.  I recommended to Imani that she did not play with her, to not set up an expectation.  Supposedly, next month her group home will be ready.  Well, this didn't work.  Imani and the kids played with her two days ago.  After awhile, she told her she had homework (she did not), and came in for the night saying that the girl was getting really bossy.  I know, I should be proud of her and happy about that she played with her, but I know the girl too well.

We were at Imani's volleyball game yesterday, and when we were coming home, the girl was in our front yard waiting to play.  Imani and the boys did not want to play, and begged me to park in the back of the house so they could avoid her.  I did.  But once in the house, they were dying to go outside and play.  They did, and after awhile, they came running inside saying the girl had a angry look on her face.  They stayed in the rest of the night.

I know that she should be moving next month, but I also know how things get delayed.  I am just sad for my kids who were starting to be able to recover, and play freely.  I have thought about talking to the next door mom and seeing if the staff could put a limit on her time when she plays.  It is one of those things where if they let her play for 30 minutes, it would work.  It is after this amount of time that it always goes south and she ends up freaking out.  But I know her well enough, to know that for them to try to get her to stop and do something else after 30 minutes, would probably not work.  She gets stuck really easily, and it is her way or the highway, which I know all too well.