Tuesday, November 20, 2012

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.

Saturday, November 10, 2012

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.

Wednesday, October 31, 2012

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.

Tuesday, October 23, 2012

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.

Friday, October 5, 2012

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.

Tuesday, October 2, 2012

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!

Wednesday, September 26, 2012

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.

Friday, September 21, 2012

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 5th 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!











Sunday, September 2, 2012

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 2nd 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 4th 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.

Tuesday, July 24, 2012

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.

Thursday, June 21, 2012

Disability Training date

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

Wednesday, June 20, 2012

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!

Thursday, June 14, 2012

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.

Thursday, May 24, 2012

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.

Thursday, May 10, 2012

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.

Tuesday, May 1, 2012

Panels

I have been on a couple of parent panels at different conferences over the past few weeks.  Well, last week wasn't a parent panel, but I was the parent on the panel at a child welfare conference.  I get am on a panel in a few weeks at a church also.  I like panels.  Not a lot of prep work.  :-)

Usually after a panel, one or two people come up to chat or ask questions.  At one of the panels, an adoptive father came up to me.  He wanted my blog info and started to tell me about his son.  His son is not diagnosed with FASD, but the signs all point in that direction.  The adoption was through the county they live in, and it does not sound like the county was forthright with info nor have they been super helpful.

I saw tears in this mans eyes, and I can't forget them.  He obviously loves his son, and is struggling.  I wish I lived closer and could offer more support.  I did email him today with a training that is coming up and is not too far from where he lives.  But I remember the loneliness I felt in this journey before I started going to trainings and meeting other parents with similar struggles.  I remember the loneliness I felt before my husband really truly started to understand the struggles that lied ahead of us.  I remember the loneliness I felt before I started blogging and met all of you.

My heart is going out to this man and his family.  They have been added to my daily prayer list.  As have the several other families who have emailed me in the last 3 weeks or so (I think I have heard from 5 separate families that I have never met before- met on the blog that is).  There are so many of us who are struggling.  Some are more isolated than others.

Are you feeling isolated today?  Lonely?  You are not alone.  I could not imagine going through this journey without my personal relationship with Christ.  I lay my sorrows at his feet each day, and my joys.  But I also need all of you.  I am not alone.  You are not alone.  Thanks for being there for me.  Let me know if you need me as well.

The first visit

We had a nice time visiting Akila last weekend, it was really good to see her.  The 30 day staffing meeting went well, and I felt really good about the team who is working with her.  Michael couldn't come due to "year end" closing stuff at work (that is come kind of nerdy accounting thing), but he was on the phone for the meeting.  

Akila wanted to have Chinese for dinner, but the options were very limited in this smaller town.  There is one Chinese buffet which people did not speak highly of, and a Japanese restaurant.  We went there, and it was really fun.  A little more than I wanted to pay, but worth it.  It was a Hibachi restaurant, so they cooked at our table and it was very entertaining, the kids loved it!  And the food was excellent.

We also saw a movie, and swam in the hotel.  Akila was well behaved, no raging.  I did not expect her to rage.  There were all of the little challenging things, her yelling at Zeke for chewing loudly, yelling at Zeke for him opening up a candy wrapper in the movie loudly, her freaking out at a store wanting me to buy fingernails, etc.  Same old same old.  But again, I can live with all of that stuff, just not the physical violence.

 We found a little sculpture garden and took some pictures
 Here we are at the Japanese restaurant, playing with swords.  Living on the edge.

So, it was a very successful visit.  Saturday was a rainy cold day which made it hard after we checked out of the hotel at 11:00.  We did drive around and explore some parks and things for future visits.  She is at a RTC called Wyalusing Academy in Prairie du Chien, Wisconsin.  It is right on the Mississippi River on the Iowa border.  Beautiful area.

She did not freak out at all when we brought her back, which she did most of the time with the crisis home last fall.  I was very thankful for that.  I am now a smarter person as Michael and I splurged and got smart phones last week.  Wow, I love it.  It is going to simplify many things once I have it all figured out.  Akila enjoyed playing with it and only begged a little for a phone.

Thursday, April 26, 2012

Getting Ready

I'm getting ready to go to see Akila in the morning, and I am so excited I can't explain it.  I really miss her.  The kids and I will leave after we wake up early, and we have a meeting in the early afternoon with her team- the 30 day staffing mtg.  Michael could not take the day off work, so he will call in for the meeting.

We are staying overnight in a hotel, and Akila will stay with us.  The 3 kids are really excited, and not too sad about missing a day of school either.  I am excited, but hoping that the headache I have been fighting today goes away by morning.  Going to bed now.  Will try to post some pictures.

Monday, April 23, 2012

Hard to find the "right" word

It is weird.  To feel almost "normal".  Maybe "typical" is the better word.  That doesn't work either I guess.  I know many people get all squirmish over the use of the word "normal".

I am a mean friend.  I texted Dorothy and Julie one night last week.  My text said something like, "my life is so easy right now".  It doesn't feel right.  Yet it does.  Maybe I should go and find my old friends who have "normal" or "typical" families.  It has been hard to fit in with them for years.    That was a mean text, as with their 11 kids each, their lives are anything but easy.  Quite the opposite as a matter of fact.

I don't feel guilty that life is "easy" right now.  I'm not sure if "easy" is the right word either.  I can still get emotional in a second flat about Akila not being home.  It is not at all "easy" for her to be gone.  So I guess "easy" isn't the right word either.  Maybe I should go with "different".  It does feel "different" to have her gone.  Yeah, that's it.  That's the ticket.  It is "different".

It is not easy.  Or typical.  Or normal.  It is far from it to be any of those words, when your daughter is living 4 hours away in a place where you don't know the people.  It is not typical.  Or normal.  Or easy.  To talk to your daughter on the phone each night, and to not have seen her for 26 days.  It is not typical.  Or normal.  Or easy.  To talk to her and have her be in the best mood you have heard her in for months.  Years.  It is so different.  Very different.

Friday, April 20, 2012

3 weeks down

Akila has been in the RTC for 3 weeks now, and I am much more emotionally stable.  The Lord has sustained me and made this transition easier in several ways.

One, was His timing.  She left the day before spring break started.  It was nice to be able to organize a spring break for the kids that did not depend on Akila and her issues.  They got to be typical kids for the week and it was fun to watch.

Two, is Akila's attitude.  She still continues to be positive.  It is like she is at summer camp.  This has honestly not hurt, like some people assume it might.  I know her brain too well to be offended that she is not upset to not be with us at home.  I also know it is only a matter of time before she starts to be mad that she is there.  It has been a joy to talk to her on the phone, and the kids and I are going to visit her next Friday and staying overnight at a hotel.  I am looking forward to this, and so is Akila.

Three, is time.  I feel like I have had more time, and am getting caught up on some things.  I am caught up on my dance work, I had a pile of paperwork (calling insurance companies, clinics, research projects, etc) that I have caught up on.  I still have a huge list (in my head) of things I want to get done (reorganizing drawers, cleaning basement, etc.), but I don't feel stressed about it anymore.  I feel like I will be able to tackle some of these things.

It is actually a weird feeling, to feel typical.  Well, actually, I don't feel typical, probably never will.  But it feels weird to not live in constant drama.  I am not a drama queen, I do not seek drama out like some people I know.  I do know a mom who has a daughter with FAS, and this mom is addicted to the drama her daughter brings.  She is the type of person who wants people to feel bad for her at all times and when her daughter is in an out of home placement, she misses the drama.

I do not.  But there is certainly an adjustment period to not dealing with the drama daily.  This feeling is similar but different to when my mom died 7 years ago.  She spent the last three months of her life living with us, and was sick for 11 months.  My every waking minute (and many of my sleeping minutes), were consumed with caring for her, fighting for her, loving her.  When she passed, I was a zombie for sometime.  Not only due to losing her and dealing with that grief, but also from the change in a daily routine that I had become accustomed to.

I am thankful for how the Lord has sustained us.  I am thankful for how He has watched over Akila and protected her.  I am thankful for so many of the details that He has worked out.  I am very thankful and blessed.

Thursday, April 19, 2012

Psychiatry update

I was on an adoptive parent panel today at a conference, called a Psychiatry Update for Primary Care.  Akila's Psychiatrist, Dr. Elizabeth Reeve was on the planning committee and one of the main presenters; she invited me to be on the panel.

The other two parents and I followed Anne Gearity who is an expert in adoption and attachment, she gave a great presentation.  She has a training manual which is called "Developmental Repair: An Intensive Treatment Model for Working with  Young Children Who Have Experienced Complex Trauma and Present with Aggressive and Disruptive Symptoms".  It is available here free for families and professionals.

The panel went really well, and as I was reading the audience, it seemed like they were very attentive.  They are all doctors, nurse practitioners or medical students.  Several came up afterwards to talk, ask questions, thank us.  Dr. Reeve came up, and she was wiping away tears and she said she wasn't the only one crying.  After lunch, she came up to me and said that as I was talking, it struck her that the meds she prescribed had not helped.  It was not for lack of trying, we tried a zillion different ones and she was always open to changing.  What I told her, is that they all worked- FOR TWO WEEKS.

I talked several times of the importance of diagnosis.  It was nice to be able to share with an important group. Crossing my fingers that people heard what we were saying!

Wednesday, April 18, 2012

FASD awareness event, May 18

I finally figured out how to post a PDF to my blog.  Hooray for me.

My friend Jerrod Brown has been planning an awareness event for FASD and it is coming up next month.  Here is a link to the flyer, I still don't know how to make it appear on my blog (other than a screen shot, using Paint, which I find to be tedious).

The event is May 18th from 11-3 at Concordia College in St. Paul.  I will be doing a presentation at it, and there will be live jazz music, games, prizes, speakers, etc.  I hope you all can come!!!!

Monday, April 16, 2012

Anticipating summer with joy

I wrote yesterday about trying to enjoy the little things during Akila's absence.  I did not mention them all, but just gave you a sample of the little things.  There is also a big thing that I want to write about.

Summer.  I have dreaded it for years.  Strange, since it is by far my favorite season.  I grew up on a lake, we had a speed boat.  Water skiing was something I loved, and just about anything water related.  I enjoyed summer during college, even though every summer I took summer classes and worked.

When I started my professional career after college, I worked for Community Education (CE).  If you work for CE, that means your summers stink.  You are in charge of all the programs to keep the kids busy while school is out.  Summer was intense, very intense.  10 plus hour days, and plenty of weekends.  Lots of stress.  Then we started adopting kids.  One each year for 4 years in a row.

I didn't quit working full-time until we adopted our 3rd child, Hezekiah.  Then I worked part-time for the National Youth Leadership Council directing a week long intensive program for high school students called the National Youth Leadership Training (a fabulous program by the way, that I think all high schoolers should try and attend!).  Directing this extremely intense program, on top of having 4 tiny kids, was crazy.  I did that from 2002-2006.

2006.  Six years ago.  That is when Akila was diagnosed with FASD, right after my mom passed away.  Every year since then, she has become more challenging, and some of her challenges, have made summer hard.  Very hard.

For the first time, I am looking forward to summer.  Yes, I have some pangs of guilt with this feeling, even when I know it is OK to feel like this.  But it is very hard to explain the excitement I have for this summer.  Looking forward to some lazy days, lots of beach days, long bike rides, road trips, hopefully a little water skiing (my knees can't handle much after 6 surgeries, but I don't tell my Orthopedic Doc that I even try), time with friends, etc.

Normally, at this time of the year as summer is quickly approaching, I am starting to feel a yucky feeling in the pit of my stomach.  Getting anxious and seeking out programs to sign Akila up for, which she ultimately refuses to go to.  I was looking at the calendar earlier today to see how much of school is left.  I did not have an icky feeling.  It felt good.

Yesterday, I was looking at the little things.  Some people might say that anticipating summer is a little one.  For me, it is a big one.  First time in over 20 years that I am looking forward to it.  Even if it is a flop (pray with me that it isn't!), I am going to be thankful for anticipating summer with joy.

Sunday, April 15, 2012

The little things

I truly miss Akila, but I have been able to be more accepting of the current situation every day.  I am thankful for the Lord sustaining me through this season.

I am not happy about it, and I don't take pleasure in her absence, but I have to admit, there are some little things that are making life more simple.  Here are a few:

  • Yesterday, I dug out the butcher block from the basement and put the knives in it.  Took the scissors our of the lock box also, and put them in places with easier access.  Typical places, like in a drawer, in a cup on a desk.
  • I tied a head scarf on Imani tonight.  She does not wear one every night, and can do it herself if she does. But I tightened her dread locks tonight and wanted them tied well this first night so the goop has more time to set.  She did not hit me or yell at me as I tied it on her head.
  • I have not been locking up my make up.
  • The kids put their allowance money in their bedroom, and were excited they could just leave it on their dresser in plain site (instead of in their lockbox).
  • I have been able to come and go as I please.  I have met my friends before bedtime, I have been able to say yes to speaking engagements in the evening without figuring out if I have a PCA.
  • Our schedule has been vastly simplified.  Not having to schedule 3 different PCA's, appt's, etc.
  • Sleeping in.  This is something I love to do.  I am a night owl, big time.  Akila has always been my alarm clock.  She could not be awake with me sleeping.
I struggle with enjoying these little things.  I am happy to make accommodations like these so Akila can be apart of our family.  I will do it again in a heart beat, if the violence could be tamed.  All of the things I have listed above, are trivial.  I would take her back in a heart beat, if she would stop beating on all of us.  But that is not in the plans at this moment.

So, in the mean time, I am going to enjoy these little things.  I know that when she eventually comes home for visits, we will have to lock things up again, and make some changes.  But part of this current situation, means that we can have some respite, and some peace, and enjoy the little things.  I no longer take for granted how easy it is to just grab a scissors when I need one.  There are so many things Akila has taught me to not take for granted.  She is a blessing.  

Thursday, April 12, 2012

Counselors in training!

One of our PCA's is doing a class project on FASD with a friend of hers, they are both Family Social Science majors at the U of MN.  They came over last night to interview me about FASD, and the family impact of it.  It is suppose to be a 5 minute video they need to make.

Poor women.  They were here for 2 hours listening to me babble about FASD.  They didn't video all of it, just a short period.  But once you get me going, it is hard to shut me up!

Whenever I encounter young people in college who are majoring in human service fields, education, or medical areas, I just can't keep my mouth shut!  Since basically none of the college programs have much info on FASD, I have a personal agenda to get as many people as I can to go through their college program with their own personal FASD focus.

And these two young women are fabulous, so say a little prayer.  I am trying to get some therapists/counselors who would be specific to FASD, and have an interest, compassion and intentional outreach to families like mine.  I still contend that if someone went through a counseling degree program of some sort, and really learned about FASD through choosing it as a focus on papers, speeches, videos, etc., did some PCAing for children with FASD, they would be amazing resources and their schedules would be jam packed!

Wednesday, April 11, 2012

Real life buds

I mentioned yesterday that I am thankful for blog buds.  I am also thankful for real life buds.  Two of my IRL buds, have been absolutely amazing and supportive over the past 6 plus tough months.  Julie and Dorothy have had late night meetings with me, sometimes weekly, sometimes bi-weekly, whatever we could fit in.  

Julie is an amazing amateur photographer and she is great.  A few weeks ago, she took pictures of my kids and of our entire family.  She and Dorothy surprised me with a shutterfly book.  I photographed a few of the pages and they are below.  They also had a canvas portrait of Akila's picture made which is the bottom picture.  I am truly blessed beyond words.








Tuesday, April 10, 2012

Thankful for blog buds

Some people blog every day, even more than once.  I go through spurts.

As I have mentioned, blogging has brought out the emotions in me during this most current painful phase that we are in.  That is part of the reason why I blog, as it is a great way to process things, to get my feelings out, to find people who can empathize or relate with me and any of the situations I write about.  I also do it to bring awareness of the complexities of loving someone with FASD.

Sometimes, when I don't blog, it isn't because of emotions related to a particular situation.  Sometimes, I am just feeling swamped and don't put the time into it.  But I do love it when my blog friends wonder how I am doing if I am silent, and even get worried.  I love this because it shows what a caring community we have created in our mini-blog network.  I get it.  I have blog buds who I worry about if they are silent.  One that usually blogs every day, hasn't blogged since a hard post and I am praying for her.

When we first started this FASD journey, I was seeking a support group, a real life one.  Couldn't find one.  There are ones now, and I go sometimes.  But I was able to get my need met in many ways, through this blog and through all of your support.

I am doing much better each day since Akila has been gone.  She has been gone 12 days.  It still sucks.  It still hurts.  But it feels right.  I do appreciate all of the emails I have received, the emails that have been sent, the real mail that has been sent.  You are all so thoughtful.  So kind.  So loving.  It is amazing.  I am truly blessed.

Pap smear opportunity

I'm leaving shortly for my annual pap smear.  Too much info?  It is a fact of life, one I truly look forward to.  NOT!!!

But I am asking for prayers as I have put together a packet of info to give my OB/GYN on doing an FASD training at Park Nicollet in the OB/GYN dept.  Hoping she will help to get me in.  I'll have to wait for just the right moment to ask her, at what part do you think I should ask?  Just kidding!!!!

She is a fantastic doctor.  I got her right out of med school over 17 years ago and loved her instantly.  Now she is listed as one of the top docs always and is hard to get into.  A few years, I gave her the Damaged Angels book to help her learn more about FASD.  She read it and called me to talk about it even.

So cross your fingers, say a prayer, OB/GYN's are just about the most important type of doctors to get the word out to about this public health dilemma.

Monday, April 9, 2012

Something so right feels so wrong

Blogging has been painful, hence I have ignored the blog.  I feel like it has been a whirlwind since we brought Akila to the RTC on March 29th.  The day after we dropped her off, I was in a fog.  The following day, the kids and I went to a resort up north for 3 nights and 4 days.  After that, we had a zillion different sleep overs and tons of playing with neighborhood kids.  It was a busy spring break.

Today, the kids are back in school for the first time since Akila left.  It is bittersweet.  It is nice to have some time alone finally, but it is also making me reflect, which is a good thing.  Especially after a beautiful Easter day which is such a great reminder of God's love and ultimate sacrifice.  My sacrifice is nothing compared to His.

What keeps going through my head, is how something so right feels so wrong.  That is a song, isn't it?  Pretty sure it is.  There is no doubt that we needed to find a placement for Akila, as her behaviors were out of control and getting dangerous.  But I hate the only option we were given, that is part of what is making it feel so wrong.  I do know it would feel wrong and icky, even if she were in a group home in the Twin Cities, which is my first choice.

We asked the kids individually this weekend how it feels to them with Akila being gone.  They all pretty much said, weird, but good.  I get that.  They were able to have an enjoyable spring break filled with friends and fun.  Without the drama.  Without walking on egg shells.  Most importantly, without the scary violence.  They had friends over, and went to friends houses.  They played with the neighborhood kids non-stop and the neighborhood kids were able to come in and out of our house.  None of this could happen if Akila was still home.  So sad.  Yet, so right.

I spoke with Akila on Friday, and she told me she had been sent to the RGR.  This means the Re-Grouping Room- essentially the time out room where they are sent when they are acting icky.  It is a room that is staffed and monitored.  I asked why and she said because she was being rude.  I asked what she was mad about and she said the staff were giving her attitude so she gave it back.

Once again, I hate being in the icky state of being relieved that she is acting up.  My first choice, is that she is healed, and stops acting icky (I know "icky" is my word today- maybe I will title this post "icky").  But if she isn't "healed", I need her to act out at the RTC so they can see the issues and give an accurate assessment of what type of community placement she will  need when her time there is finished.

I spoke with her yesterday also and she had been to the RGR on Saturday, twice I think.  Not sure, as she seems unclear on the days and times, which makes sense.  Nonetheless, she was really upbeat on the phone, as a matter of fact, she has been every time I have talked to her.  No whining or complaining.  She is loving the school, food is great.

I was nervous yesterday about talking about our Easter and traditions, but she asked about them and was really happy and sweet.  She asked if we had cornish game hens (which is our tradition), and we said yes.  She asked Imani if they were good and Imani said yes and Akila was genuinely happy.  She asked about the egg hunt and was happy about that also.  They did have an egg hunt at the RTC.  They had some things in some of the eggs like an extra phone call, or a night they can stay up late.  I thought that was a good idea.  She got 4 extra phone calls and 2 late nights.

I was so thankful to the Lord when we got off the phone with her.  I had a pit in my stomach all day yesterday  because of her absence on a special day.  I was worried about how to handle the call with her.  But He took all my worries away by having her be so sweet and positive.  Once again, it is like we are getting to enjoy her, even only on the phone so far.

I remember this when she was in the crisis home.  Although the phone calls were not enjoyable after the first few days, every visit except one was great.  We were able to enjoy Akila and improve our relationship.  This is one of the things we wrote in the letter to Hennepin County when we were requesting out of home placement.  Akila desperately needs to have a positive relationship with those who love her the most, which is us.  She needs us to be able to advocate and fight for her, and we will do this no matter what, but it is harder to do when she is living at home and beating on us constantly.  She beats the fight right out of you.  Wow, that sounds strange.

So, God has been faithful.  He knows when I need to be filled up, and He did that yesterday.  I am grateful to have a God who is always there for me, and who made the ultimate sacrifice for someone like me who does not deserve it.

Friday, April 6, 2012

One moment to the next

I hate having Akila so far away.  I know that she can't live in our home anymore, but 4 hours away is ridiculous.

We are having a nice spring break.  The weather has been beautiful and kids have been playing with friends a lot.  I haven't cried for two days, so that is good.  Still having huge waves of sadness.

One moment, I am folding laundry and get choked up over Akila's clothes that are still in the laundry pile.  The next moment, I am thankful that I don't have to lock up the knives anymore.  One moment, I am sad when I walk by her room.  The next moment, I am thankful that I have been able to sleep in.  One moment, I am sad when I have to empty out her backpack from her last day at school.  The next moment, I am thankful the kids are able to have a friend over to play.

What is really strange, is that there are a few parallels to when a loved one dies.  I am not trying to be overly dramatic, and I know this is not nearly as serious as losing someone you love to death.  But I remember the waves of emotions that would come over me after my mom died when I would see something of hers.  I feel similar feelings with Akila, although I know she is just gone.  It is just so unnatural to not have your child with you, or at least close enough to visit.  And it has only been one week.

I did not speak with her tonight, nor on Sunday night, but have talked every other night to her.  She is still happy, although the last three phone calls she has asked when she is coming home.  I tell her not for awhile, and that I don't know when exactly.  She is satisfied with that answer.  She is enjoying the new school (which is within the RTC), and is even liking the food.

I have been working this evening on painting my kitchen.  You might remember that when we left last week to drop Akila off in Wisconsin, that we had a painter here to paint.  Well the color I chose is horrid.  So I have the pleasure of redoing it.  It was not helpful to get home from that long emotional day to a kitchen that looked like crap.  But I'm taking care of that problem.

I think that for the next week or more, I will be living one moment to the next, trying to come to grip with Akila being gone.  Strange that as hard as I fought to have her placed, I am having a hard time with the placement.

Wednesday, April 4, 2012

Getting FASD coded properly

I came across this on a FASD Facebook page.  Please help this Dr. out if you can!!
My name is Alla Gordina and I am a general pediatrician in Central New Jersey, specializing in adoption and foster care.

By this e-mail I am requesting the help of families whose members are affected by FASDs.

In late 2011 many of you responded to my FASD survey, providing us with a lot of extremely important information that will be used in our new project "Fetal Alcohol Answers", which will be launched by the end of this month.

One of the major obstacles in providing care for persons affected by prenatal alcohol exposure is the absence of appropriate diagnostic codes in International Classification of Diseases (ICD). Such void seriously affects the possibility of a patient to receive appropriate diagnostic evaluations and thus - so much needed treatments and accommodations.

I have been in contact with the American Academy of Pediatrics about improving the coverage of FASDs in ICD. Today I received information that it will be possible to present the FASDs case to the Special Advisory Board that governs ICD coding in the United States.

While this isn't by any means a guarantee of success, we finally have the ear of the people who make these decisions, and I looking for help putting together a convincing case for the need for more codes describing all components of FASDs (FAS, pFAS, ARND, etc). Even more, in their correspondence the Board representative stated that if they will believe that issue is urgent enough, the change can be made even in ICD9.

That means that we can attempt to change the situation in 2012 (as implementation of ICD 10 in United States is scheduled for October 2013)
I am working with several FAS clinics, but I do strongly believe that parents do have an important say in this process too.
Please send me at coding@fetalalcoholanswers.org your stories describing (a) the need for proper coding and (b) your assessment of the urgency of the situation.

If your child is followed by the FAS clinic, feel free to forward this e-mail to your clinic's team, so we will have input from as many groups across the country as possible.

Thank you in advance,

Alla Gordina, MD, FAAP

Clinical Assistant Professor of Pediatrics
Drexel University College of Medicine and
UMDNJ - Robert Wood Johnson Medical School

Global Pediatrics
International Adoptions Medical Support Services

www.FetalAlcoholAnswers.org
coding@fetalalcoholanswers.org

7 Auer Court, East Brunswick, NJ 08816, USA
732-432-7777 (voice)
732-432-9030 (fax)

Saturday, March 31, 2012

Longest day ever

Thursday was rough.  Very rough.  Friday also felt icky.  Tried to blog yesterday morning, but I couldn't stop crying, so I put it off.  I think I can do it now.

As I am writing, the 3 kids and I are at Breezy Point thanks to our friends Julie and Mark, who couldn't make it to the first 3 days of their week long time share.  The timing is perfect, and this gift is a true blessing.  Michael could not get Monday and Tuesday off so he stayed at home.  I think some time alone for him is healthy once in awhile.  We climbed the fire tower, and went swimming so far.  We are taking a dinner break right now.

We left after we got the painter set and Akila was in high spirits.  It is a 4 hour drive, and she was an angel.  She would out of the blue say "I love you mom.  I love you dad."  It was awesome, and sweet, but heartbreaking.  We arrived at the facility at about 2:30, our appt was at 3:00.  She wanted to go in so we did.  We had a tour (the guy asked her close to the end of it what she thought, and she said "Awesome!!", did some paperwork, and about 1 1/2 hours later, it was time for us to leave.

Michael said to the Admissions Director, "So we are done?"  He said yes.  Akila said to Michael, "It's OK dad, you can leave now.  I'll be OK."  I teared up, gave her a hug and a kiss, told her I loved her, choked up , waved to the Admissions guy, and left.  Michael teared up too as he said goodbye, and we left.  And we cried.  On and off the entire 4 hour drive home, and then some more.

It was horrific.  I honestly think it would have been easier for me if she were raging when we left, but I also know it would have not been better for Akila.  So I am thankful she was so good.  It was a long, horrific day. There is no other way to describe it.

The other 3 kids slept over at Dan and Tara's (Michael's brother and wife), so Friday morning was quiet.  Michael had decided to work from home, not knowing how emotional he still might be.  I woke up, tried to blog, but it was making me a mess.  I had to send an email to Akila's social worker/therapist at the RTC, cried all through writing it.  Michael and I went out for lunch.

Then at 4:30, I called Akila.  She had a super night and a great first day at the new school.  She loves her room, food was great, and school was awesome.  She is at summer camp, basically.  The social worker said the few kids who come in excited, usually lose that fairly soon, once they realize all the rules and things like that.

Akila always has a honeymoon phase when she goes somewhere new.  At the crisis home, it was about 2 weeks.  I think it will be longer here because it will take longer for her to get more comfortable.  It was good to talk to her.  Shortly after I talked to her, I picked up the other 3.  That helped me to start to come out of the fog of emotions I had been stewing in.

This morning, the kids and I got up, packed up, and headed for Breezy Point, a resort in northern MN.  It is just what we needed.  We will be here until Tuesday- it is spring break this coming week.  I so appreciate all of your prayers and support.  We definitely felt God's arms around us, and around Akila which is the most important thing to us right now.