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.

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.