Lunch with Fiona

Fiona has been struggling the past few months.  It has been hard negotiating the ups and downs of her mood swings, but last weekend we had a good visit.  She said to me that she finds it hard to visit home right now.  She wants to live here and can't.  To her,visiting here   feels like waving this in her face.  That is of course, not my intention. The goal of coming home to visit was to have healthy loving relationships with the family.  For a long time she has bought into my very genuine belief that what we are working toward is her moving to another less restrictive level of care.  I have repeatedly talked about how as kids get older they don't live with their parents.  They get their own place, or they have a room mate and share expenses etc.  It may help when I actually have one of my kids do this so that she can see I am not making this up!  Rob is close but still in college and not quite there yet.

However, despite her not doing well visiting here I wanted to do something to maintain connections so we went to lunch at a fast food chain of her choice. The food was fairly ghastly but the time together was fun.  There were selfies and laughter -- lots of laughter.  I wish I knew a better way to help Fi.  Her mental health challenges and her cognitive delays are kind of the perfect storm for behavioral challenges.  But since I can't come up with any better model than what I am doing right now, I am  glad we had time together to laugh, love each other and reconnect. This is Fiona and Lissa at the restaurant.

Thinking and living deeply

There are the days when my emo teen feels like he will drive me round the bend.  Days when his sister "the tweenager" does the same.  There are also some wonderful conversations and experiences happening.

One convo that I treasure was with KC about a week ago.  He is thinking about the fact that next year he is old enough to get a job.  He wants a job  phone and knows he has to have a job to obtain said phone.  There are several markets in our community that are good first jobs for kids.  Rob worked at one of them and that may help the hire process as Rob was a great worker.

KC was concerned about how to address people.  He knows that if he is stocking shelves people will likely come to him and ask questions.  His concern was that in todays society, saying sir or ma'am might not be polite.  "What if someone is trans and I can't tell?" was his question.  I was so proud of him for thinking deeply about this, for having the compassion to see that speaking to people in the way they see themselves is important.

We talked about how the interaction in the job he is likely to obtain would not necessarily require sir,ma'am or anything to help someone out.  A friendly smile and a comment like "oh we have those in aisle 2 should I show you?" would work out just fine.  If it was someone he was meeting where a more in depth relationship/conversation was to unfold, it was totally fine to either use their name or ask how they preferred to be addressed. He is my sensitive, deep thinking soul.  But in particular this level of sensitivity makes me have hope in the harsh world we presently reside in.

Last night the two kids and I went to our church to help stock for today's monthly food pantry.  There is a ton of set up work to do and we have always had dance commitments that kept us from helping. With no dance in the summer and no camping trip this weekend we were free to help.  KC was a huge help lugging boxes, breaking down and disposing of recycling and keeping things organized.

Lissa and I worked together packing large boxes of eggs into one dozen boxes.  Then when we finished, she wandered over to a table where a bunch of store brand small pies were located.  Her sharp eye picked up on the fact that she saw one pie with mold on it.  She then decided to make it her mission to check every single pie to make sure it was safe and good quality.  There were a LOT of pies probably about 100.

I had finished my task and things were wrapping up.  We had a 30 minute drive home ahead of us and had worked for 2 hours.  I confess I was tired.  I asked her if she'd like me to help her finish up the quality control.  She looked at me and said "I've got this. I'm just fine.  Go find someone to talk to!"  (My love of chatting is fairly legendary in our home!)  It was clear that she really owned this job and that it was not fair to jump in and help.  I took her advice and found someone to chat with for the remaining 10 or 12 minutes that she needed to complete the job.

I am grateful that all my kids seem to mostly live with compassion and think of others.  We need that in this world.

Kwanzaa Night!

In an odd way the goddess apparently felt the need to smack me up side the head and slow me down.  I came down with a stomach bug on Christmas Eve and was sick all that day and all Christmas Day.  I woke today, restored to my normal energetic self.  While I did get up to do the gift opening on Christmas morning, I spent the majority of the day cloistered in my bedroom to try and contain my germs and recover most quickly.  I hate being sick. I have no time or patience for it!  I am especially annoyed that this happened during Christmas!!! I adore the entire celebratory month of December.  While I know I am fully at fault for squishing in every bit of excited fun that I can, I just can't do it any other way.  Some day from the confines of my rocker I will scroll back through a legion of memories of concerts and ballets, parties and gift making, and so so much more.  

Fiona was supposed to be home for Christmas and on Christmas Eve day I got a call from the group home. There had been a very serious incident with Fi; one which may have some longer lasting repercussions due to the level of property damage she engaged in.  Her plan does not permit her to come home within 48 hours of that level of disregulation.  I am not adverse to this.  Fiona has such trouble self regulating and if an incident of this magnitude happened, I feel woefully ill equipped to prevent it or something worse in a simple family dynamic. Yet in an odd cosmic way, things were aligning. You see, I don't have a bedroom for Fi.  I always give her my bedroom and sleep on the floor in one of the kids rooms when she stays over.  This would have been less than enjoyable given how I felt physically.  (usually it does not bother me in the least)  

The family decided to wait the big holiday dinner a day so that I could enjoy it with everyone so tonight we feasted instead of yesterday.  We had a lovely Kwanzaa dinner instead of a Christmas one.  Kwanzaa is a holiday that Rob never really has embraced despite all my efforts to make it part of our family culture.  However the younger kids are really into it.  The picture above is our kwanzaa candle blazing.  The first night of Kwanzaa is Umoji which means unity.  It was a beautiful night to celebrate family unity.  We have fewer family meals these days.  Between my wife's work schedule and my son's work schedule it is rare for us to all sit at table together.  Tonight we were all together, laughing, eating and enjoying the gift that is the greatest of all-family.

Executive Director Response

I finally heard back from the executive director of the program that runs Fiona's group home.  He basically said sorry, no bunny and gee I am sorry that other staff misinformed you.  But hey on the positive side, don't worry because you should feel really good about the fact that we are putting steps into place so something like this won't happen again.

Oh yeah, color me ecstatic!  Not!!  I wrote back that I would like details on exactly what those wonderful step are going to be because I have absolutely no confidence in the program and no faith that when I get an answer from someone that I will be able to be confident it is a real answer and not just what they thought Fiona or I wanted to hear at the moment. I await additional response from him and also from the other agencies I have contacted about the way the program handled this.

What they don't seem to realize is that this is far and away about more than a bunny.  It is about the spiral they put my daughter into by breaking faith with her. She didn't just break her TV that she spent 3 months saving for, she also tried to self harm.  This is something that she only does when profoundly disturbed and it has not happened in over 2 years.  The fact that this level of despair was caused by and agency that is supposed to have her well being in the forefront of their decision making very much angers me.

I have no expectation that I can change the decision. However I can be a person who holds them accountable for the mishandling and that is what I intend to do.

Ups and Downs

This past weekend was a whirlwind of activity. It was recital weekend, two days of crazy busy as the youngers acted and danced their way through the school's production of Frozen.  This was the first year that KC had a real acting part, in addition to his 5 dances.  Lissa had a hip hop number.  It was a weekend filled with costumes and make  up, keeping kids fed and somewhat calm and rested.  It was a weekend where over the course of 2 days many friends and family kindly come out to watch and support my two dancers.

Fiona always comes home to go to the production with me on the last day. (the first day of production I was working back stage)  She has always been excited to do this and as the little kids always went into the Big City for all of her school events, she has enjoyed coming to see them.  After the last performance we also always go out for pizza.

Fi was happy and engaged during the performance and on the way to the pizza place.  However right after we placed our order it all went south. Really fast and quite badly.  She didn't want to get her beverage from the machine so I suggested she just hold onto the cup so she could get it later if she was thirsty.  She refused to sit in the booth with us and sat at an adjacent table, shaking salt all over the table and swishing it around with her fingers.

I tried giving her space.  In the grand scheme of things, I can clean up salt. LOL  I tried engaging her in private conversation after a few minutes--no luck.  Meanwhile I am also trying to keep things positive for the youngers who have looked forward to this and are shocked that big sis is acting this way.  We play some word games together and the food arrives.  I ask Fiona if she wants her pizza at her table or if she wants to come sit with us.  She bolts out of the restaurant.

I go outside to try and get her back inside.  She spewed angry words.  None of it made any sense.  Suddenly she was hating me. Hating the littles.  Wanting staff to get her immediately. (staff is 20 minutes away at best, so that can't happen.) Refusing to come in. Refusing to eat.  I was baffled because in all our years together the one thing Fiona has never done with me is bolt like that.

I felt really nervous because I had to leave the younger kids in the restaurant which was thankfully not crowded, alone while I tried to calm Fi and get her to come back in.  I did get her to walk inside so I could pack up pizza in a box for the kids to eat on the way to take her home.

Fiona cried a bit on the way but I know when she is that upset she can't talk, so I just played some music on the radio and got her back to the house.  Inside she screamed to staff that she wanted to be left alone and took off for her room.

It was a hard ending and not what any of us had expected or hoped for.  I think my calmness kept things from getting worse, but I do know that KC and Lissa were disappointed.  It also has made me table for the moment, going on vacation to NH with Fiona and the youngers.  I can't leave them home because of my wife's work schedule and now I don't trust that Fiona will not melt down 90 minutes from home, leaving me with a volatile young woman to try and stabalize with the two younger kids.  Logistically I am not sure I can keep everyone safe under those circumstances.

The hardest part of all this is that Fiona is still not really able to impart what triggered her anger and meltdown.  I can't fix something--or even plan to avert something--when I don't know what the trigger was.  There was nothing said that anyone argued about, so I have to guess it was something that somehow replayed an old memory that likely had nothing to do with any of us.  But it also marks the third consecutive visit with issues at some level.  Sigh.

More Fiona problems

I opened my email this evening to discover that the agency which runs the home where Fiona lives, had a "brilliant" idea. (please understand that word is meant to be read with dripping sarcasm.  Due to the altercations that she had with another woman in the home, they were suggesting that Fi be moved to a new home that is being constructed in the western part of our state. This would happen sometime next month.

I am not amused. First off, I only found out about this through the DDS person who they contacted. They did not contact me, as the guardian which I find grossly inappropriate.

Secondly, moving my daughter does not preclude future physical altercations. I wish that were the case, but I know it is not.  And anyone with half a brain who has read her history should be able to figure that out.

Thirdly, we are her support network. I can not visit her often if she is over an hour away from us.  She is 15 minutes away now and home often.  Also her home visits can be shorter, of an afternoon for instance, or going out to dinner and then getting brought back to the group home. This is of benefit to her in a multiple of ways.  When the intimacy of family life feels too intense, it is easy to disengage and go back to the group home.  Also, at another level, I feel that it models the kind of visiting that you do as an adult.

Moving her out an hour or more away additionally puts her even further away from first family members who try to keep in touch with her and who on occasion gather at our home to be with her.

I have written a strong email stating that if this agency wants to move her an hour away that I am very opposed and that I would rather look to a new agency to provide housing and services for Fiona.  I think, but am not sure, that DDS is going to be supportive.  We shall see.

Struggles and Extractions

It was Patriots Day weekend, a long weekend for me with no work yesterday. This is a holiday that not all states celebrate, but ours does.  It was a low key weekend for me, though my wife says that is purely because I don't know how to relax.  She is right about that.  I hate sitting around.  I love to be doing.  I don't want to waste a minute of this precious life I have been given. Yet I know that actively appreciating can lead to frenetic racing, so I work constantly to try and balance my own high energy with "pauses" for the rest of the family.

I did a lot of swapping of closets this weekend.  Us folks in the Northeast have a deep abiding urge to shed the winter woolies. So since Saturday weather was warm, I did this. I knew it was going to get cold again later in the weekend, but I am sailing my ship with positivity and believing the warmer temps will be back sooner rather than later.

I got a lot of outgrown clothes either to the consignment shop or to the pod where one can donate usable goods for free.  I even sorted some of my shoes (my one real vanity) and consigned those that I have not worn and will not wear again. Once you are in the um, 50's , some styles just look down right silly on you!

Sunday was church and that is always a touch stone for my week.  Our minister spoke on genocide and there is much for me to mull over in the week to come.  I tried to write my piece to read tomorrow at Amazing Jane's retirement party. It is a work in progress.  There is so much I want to say, but I want to be respectful of Fiona's privacy as well at the gathering.

Fiona has been struggling and I have spent a lot of time on the phone with her. When she is disregulated she alternately pulls me close and pushes me away, blaming me for all the injustices both real and perceived in her life.  She refused to go to the new day program that I have been working months on because her hair was not done in extensions.  She did not ask for extensions until late the night before when it was not possible to even get clip ins to skate by on.  I am not sure if she is afraid and did this subconsiously to avoid going or if it is the fact that she has a total inability to plan ahead.  At any rate, that night she totally lost control attacking staff and another resident and requiring a hold and one on one presence for the next 24 hours. She would call me and rage at me, saying she didn't want me to be my guardian any more.  I tried to just let her vent and then we would hang up.  I would call back a few hours to say that I loved her and that I would always be there no matter what she felt she needed to say, she would cry and calm down, only to wash rinse repeat hours later.   Yesterday was the first day she sounded more herself and I am hoping the worst is over with as I want to bring her to Jane's farewell party tomorrow.

Yesterday morning I had a tooth extracted.  Apparently I am such a weirdo that I did not know I had an abcessed tooth.  There was no pain. It was found during my regular cleaning last week.  I had the tooth out in the morning and all is well.  They gave me a pain med which I did not need or even bother to fill. I took Ad*il yesterday, but today I don't think I will need anything.  The only annoying thing is that I won't be eating many salads this week. OK any salads this week!  I need to eat softer foods while I heal and salads are my favorite lunch.  I made them every morning and love throwing different add ins--egg, edamame, tiny bits of roasted veggies, salsa, you name it, into the regular base of greens.  My wife hates salads and thinks I am nuts.  So today it is pumpkin raviolis instead, but I really can't complain as all went so well.

All day long my wife kept telling me to go lie down and I kept saying "why?"  LOL  So we got the camping gear out of storage and organized instead as it is only 5 weeks till I take the kids for the first camp out. Now THAT makes me smile!

Fiona struggles

Mental illness is the pits.  There is no easy solution, and it tends to rear its ugly intractable head when one is least expecting it.  Or perhaps least prepared for it.

Fiona has been in a bit of a downward spiral these past weeks.  I think that a big factor is the wisdom teeth extractions. They have been doing them one by one.  So one tooth out, a week to 10 days of healing and bam, another appointment for an extraction.  Pain and doctor visits are hard on anyone.  On someone with mental health issues and cognitive issues, it is worse.

The two extractions done thus far threw monkey wrenches into visits as she was not well enough to come home for obvious reasons.  Then last Friday Rob had his extractions and though Fiona was okay, he needed quiet, rest and attention.  Also I had just been diagnosed with  pneumonia which while not a primary issue definately figured into the decision not to have her come home.

I have tried to be in extra phone contact. To send little cards or itunes gift cards for her.  But I know that for Fi visits home are a key part to stability.  I could see her beginning to show signs of disregulation at her ISP meeting this month.  By this Monday she was hysterical on the phone with me.  She had a fabricated story of leaving the home via her bedroom window and walking down the road with no one noticing.  According to Fiona she then turned around and went back in her bedroom window.  For a variety of reasons, this was a fabrication, but she did later try to act this out via a bathroom window in the home.  The windows are all alarmed and she was stopped.  However she did not calm or settle till after 1 a.m. and the next morning she also refused to attend the dentist appointment for the next extraction.

I sure can't blame her, though I am worried as the tooth does bother her. However her mental health is more important than the tooth at this point and I have asked the staff to try and postpone this for a month or so to give her time to stabalize.

Meanwhile Fiona is blaming her decompensating the presence of another house mate. She and the other young lady have a love/hate relationship and right now it is more hate than love.  Fiona is also angry with me because I told her that I always love her and I am here for her but I won't help her blame other people for choices she is making for herself.  Her housemate did not push her out the window, she chose to do that. Fi was not amused! She definately believes that if I don't agree with her I am against her.  So I have to just keep ignoring that and I keep calling and checking in, keeping things light.

But I worry. I don't know if she will be able to get things back into some semblance of control or if she will wind up with an emergency hospitalization. Now, I am off to get some pineapple, which I have found works as well for me as most cough syrups!

Farewell Vacation!

My holiday break is about over and I am sad to see it go.  Life is so fast paced that it takes me a loooong time to really let go of thinking of times and schedules and by the time I do, it is just about time to think of them again! Also my job does not lend itself well to long times away.  Aside from breaks at this time of year, I mostly only take a lot of 3 and 4 day weekends with my vacation time. A couple days ago I started forgetting to put my watch on. That is my sign that I am really in a "vacation" mindset.  My watch is always on me.  Some people use the alarms on their phone. I am pretty old school for time pieces and have a timex that has a glow in the dark light! LOL

I love the picture above, even though I think I have used it all ready on the blog. But in the not too distant past I would have thought that this picture was not attainable.  All of us routinely together on holidays? But the Great School helped Fiona so much. She still has severe issues and probably always will, but pictures like this are myriad now in my photos.

I toured a really great day program for Fiona while I was on vacation.  I am not sure if it will work or not because the program is not allowed to administer medications. She has a psych med she takes three times a day.  I hope that perhaps there are adjustments that could be made that would allow her to participate in this.  The program has a learning component for adults who wish to expand their learning, a job readiness component (and they have a lot of connections in the community with employers who hire their people) an art component with a ceramics studio, a fiber arts center, a wet media room, and more.  There is a fitness room as well as a cafe for just gathering.  It has a school like set up where the participants choose with help their 4 focusses for each semester. I SO hope this works out for her as it would greatly expand her horizons.  The program needs to review her information and her psychiatrist has to look at the medication issue but it is at least a potentiality for 2015 to have a great opportunity for her.

The kids and I have had a lot of fun playing the games our family got for Christmas.  Games are always family games so no one person has ownership.  We have rocked out to Dance Revolution 2015, played Slamwich, Nada and Super Farkle.  Oh and Scrabble Slam which is a lot of fun as well.  In our house, games that you can do in about 15 minutes with a max of about 30 minutes are the best fit for our schedules.  All of these work well within those constraints.

I've marshalled the troops and they have happily spent a lot of time helping to undecorate our house and put up our snowman collection and tidy various messy spots within our home.  A family our size and a home our size seems to make a lot of messy spots.  I wish I kept up with that better but at least twice a year I get a chance to hoe through things really thoroughly, usually in winter and again once in the summer.

My wife was able to take the kids in to the city to see our friend Jane Houghton's art show at the Hanover.  She is an amazing artist and has taught our KC so much and continues to foster his artistic leanings.  The kids loved the show and her amazing mixed media work.

We read our 2014 memories together over supper the other night and enjoyed that too.  All year long when something happens that we want to remember, a family member grabs an index card, jots it down and puts it in an envelope that hangs on our kitchen wall.  They can be big things or little things.  Campouts, seeing ducks crossing the road near our street, sunsets rainbows, and physical achievements--anything can be written down.  It was fun to recount them together and to wonder what new things the year will hold.

I know that January is going to be very hectic at work and that on the 20th Rob will head back to school for the next semester.  Part of me feels very unready to launch back into the crazy.  But I know that once it has been going for a few days, it will be normal again, and I will at least be entering it with a more rested frame of mind than I have had in a long time.

Checking in with Fiona

Fiona was here this weekend and it was all good--till it suddenly wasn't.  I had no inkling of trouble brewing, she was not showing any of the physical indicators that cue me that she feels stressed. She wasn't saying anything that would give me a hint.  However a very mnor thing (KC creating a new game to play with a ball while the rest of us walked a dog) set her off.  She announced she had planned to play soccer. She only wanted to play soccer. We were not fair. KC was mean. She made a mistake having me her guardian and finsihed off the tirade with tears and announncing she wanted to go home.

I know that she has told me when she is calm that she does not like losing control in front of her siblings so I figured that was the root of that request. However she refused to communicate with me and stormed into the house, leaving me to explain to the staff as best I could, all that had happened.

Then I came home and spent the rest of the night off and on consoling KC who was devastated by the outburst.  He and Fiona are very close and he felt blindsided and betrayed.  Fiona called that night and said she was sorry, but I could still hear the anger and agitation in her voice.  I told her I acceped her apology and that we would talk Monday.

I called her after work and she sounded much more herself.  She wanted to know if I was mad at her. I explained that I was not angry, but that I was a little disappointed that she felt she had to run home and that we could not work on taking some space and then talking.  I also said that I thought something else was bothering her because games had changed before and that had never been a problem.  I asked if she was nervous about going to Dee's party next Saturday. She said that yes she was.  She wanted everyone to get along.  I said that I was sure we would.  She wanted to know if I had ever been with all the people that would be there. I said no, but I had met a lot of them and that I was looking forward to meeting those I have ony Facebooked or emailed.  Fiona's deepest desire is for all of us bio and adopted sides of her family to "blend."

I genuinely am not thinking that anything other than a good time will happen.  I think she could finally see that I am sincere in that and seemed to sound more relaxed.  Hopefully she will do well at her program this week and Saturday, we will be off to Dee's baby shower.

Fiona's swim

It is only Wednesday but it has been busy.  Fiona had a scare at the local YMCA. The house took the ladies swimming.  Fiona had a very traumatic near drowning as a child.   It scarred her deeply. She is not a proficienit swimmer.  A housemate pulled her into the deep end and let go of her hand. She floundered to the wall and used it to get herself back to the shallow end.  Fi's impression is that she nearly drowned.  I am sure she did not--the lifeguard never had to assist. But I have learned that perceived reality is as important as the real deal.

What I am sure about is that this massively triggered her trauma and PTSD and all the other things.  She was nearly hysterical when she called me hours later.  I wrote an email to the house director.  NO response.  I wrote another. NO response.  I wrote a third and copied DDS and got an answer.  The most frustrating part for me in all this was that I shared that water history with the entire team so that there would be no issues surrounding water.  I told them how I had to hold her hand when we went to the lake last summer. And how she took 30 minutes to work up the courage to really be in the water and was shaking when she stepped in.

Missteps like this definately break trust with Fiona, which makes it harder for her to handle other stresses in her life. It caused her behaviors to rachet up during the week and last night there was an incident where she came to blows with another housemate.  It wasn't really serious--no one was hurt, but it is an indicator of a level of decompensation that she has not had in a long time.

On a positive note, Rob got the results on all his tests and he passed, so he has officially graduated from high school.  We have scanned the paper work to the college of his choice and await the next step.

A post about healing

Fiona called me last night all excited.  She wanted to talk to Rob because she had some "big plans" for Mothers Day and wanted to be sure she was going to be home for it.  Rob was out skateboarding so he'll call her tonight but I could assure her that she would be home. And that, more than whatever she is planning, made me smile.

The fact that she could be home--heck the fact that she WANTED to be home, is so huge that there are not really words to describe it.

Sure, she has called me Mom since she was nine.  But for a looooooong time, that was just a word she put in front of my name; I think because she thought she was expected to. I wasn't her mom in her heart. That spot belonged to a woman who due to her own problems and demons had let Fiona down, and had left "the system" to handle it.

Mothers Day has always been a day we didn't do much with Fiona. Because in the weeks leading up to it she was understandably filled with a cauldron of  painful emotions.  Over the years she shared--anger at her first mom.  Grief for her first mom. Longing for her first mom. Despair. Hating me for being white and gay. Hating me for existing.  Wishing she could be my biological child so she didn't have to feel any of these things. Wishing that her anger and fear didn't block her from healing.

There have been countless hours of therapy. Countless times of hugs and cuddles and just reminding her that I loved her for who she is and that she didn't have to stop loving her first mom, nor should she.  There has been reaching out to her first mom to try and facilitate contact. There has been knitting as many aspects as possible of her first family and our family together into one big raucous, loving family. . . and there has been healing. At last. At least a little bit.

Fiona is 22 now, so I am not minimizing how very much as a parent of a traumatized child you need to be there for the long haul.  If you have a Dr. Spock book that says what will happen at what age?  Throw it out.  Things happen so much more differently with kids coming to us from abuse and other forms of trauma and loss.  There are deep deep wounds that supplant all the milestones, that jumble up the development.

Usually Mothers Day has traditionally only been for Kirsty and there is an "Oomas day" for me (usually on the first day of summer, my favorite season.)  This year we will likely be changing that up because that whole concept would be too hard for Fiona to grasp. And her wanting to celebrate this with me is honestly, the greatest gift of all.

Busy Times,Fun Times

Things have been such a whirlwind lately.  Dance is ramping up with the recital coming on in mid May. That sounds a long way off but isn't when you count weeks for practice.  KC is always keenly aware of this and begins practicing on his own at home very regularly.

The boys went to a local hockey game w ith our close friend and their godparents yesterday.  They had a blast!  The girls got their time the day before, with me taking Lissa and Fiona to a local salon for a "spa" day of manicures and pedicures.  They too, had a blast and it was a great sisterly bonding time.  Fi sees a lot of herself in Lissa and enjoyed having time for just the two of them.  Lissa has wanted to do this for ages and was totally into the experience.

Work is insanely busy, and of course it is tax time and I am trying to carve out time here at home to work on that. I will never love doing taxes, but this year I can file as married when I do my federal taxes so there is something very cool about that.

My friend L came over yesterday afternoon with her daughter and she and Lissa played together all afternoon.  Eventually the little boy next door came over too so even though 2 of mine were gone, there was still a house full of laughter and fun.

In the midst of it all, the group home director called me to report that Fiona had an incident at the home and required physical restraint.  It sounded like she was very out of control which has not happened in a long while, but which I did feel she was slowly building towards.  I do want to know though what a restraint consists of with this new program.  They have a lot of stuff written in their plan about how there will always be 2 staffers but that to me is just to give themselves alibis.  What I want to know is how they are handling my daughter.  She has been in places where holds were few and appropriate and in places where they were frequent and done with a disregard for her--almost intentionally frightening and escalating the situation.  So today, some more discussion with the head of the program is in order.

And, in other exciting news--daylight savings time is back!!!!!! I love that.

Fiona's behavior plan

The pictures are all examples of art Fiona has created over the past few years.  The first, is a marvel to me.  A 3 d guitar, almost full sized with layers of cardboard.  It is in my bedroom as she gifted me with it and I love to surround myself with things the kids have made.  Next up is an acrylic painting she did for Rob for his birthday a couple years ago.  Below that, a painting she did for me. It is on that crinkly cardboard.   I emailed them all this evening to Gail who is going to use them as proof that Fiona could benefit from and enjoy some real art based curriculum and therapies.  Something more than making puzzles that are glued together and hung on the wall.  Not that puzzles are not a good pass time--but they should not be the be-all end-all of her artistic experiences.

Gail and I talked briefly tonight after I got home from work. She had called the director looking for a copy of the behavior plan.  She was sort of brushed off.  I explained that the plan has not been formalized as I refused to sign off on it in its present state. I explained we were meeting Thursday. Gail asked that I scan her the proposed plan with my markups (which I am fine with doing).  She actually is quite happy that I did not sign off on this without further discussion. I do find it interesting that the director did not share with her why they could not send the plan.

We also will meet at the home on March 6th to work on the ISP for Fiona. That is as I understand it, similar to an IEP for kids. Only the service plan is for adults.  I am very lucky that Gail is on board. I did tell her that the folks at the home were coming round a bit.  I think that they are not used to very involved family members. (to which Gail said "tough! they should be thrilled that she HAS involved family")  While I personally agree (grin) I also know that systems get rolling based on the norm and if that is NOT involved family, that perhaps explains some of what I have bumped up against.

At any rate, we are involved and are here for the life time so the group home will hopefully adjust to that. Meanwhile, in other Fiona related news, she and I are planning a "Forever Family" party to celebrate the guardianship.  She is inviting friends from the Great School and some of the staff from there. We will hold it at a restaurant that she loves and hope to do this on February 22nd.

Behavior Plans and Niagara Falls

This is a hard post to write, because in no way do I want anyone to take away a negative impression of my wife.  In fact, I have the utmost respect for her as a person and as a parent. Everyone has limits and I understand that.  She has stretched and grown so much during this parenting journey, a journey in large part started by me, because I always wanted kids. Lots of kids.  She would have been happy for us to remain a couple. She loves our children, but craves more solitude and silence than will ever be possible till the kids are grown!

Last week I received Fiona's proposed behavior plan from her new program.  I am very unhappy with it.  There were attempts to make her visits with family contingent on behavior goals. There is a plan to try and have her have 12 months with no instances of talking back or swearing etc with more than one re-direction from staff.  (ex:  Fiona gets mad and swears, staff suggests calming activity, Fiona accepts all is good.)  Except that this is not feasable or logical. And her participation in the wider community is also potentially held hostage by a need to achieve this and other significantly challenging behavioral changes. There is a transport edict  where she must ride in the very last row of the van because in 2006 there was an incident where she did something unsafe.  2006 and nothing since.

I believe in helping everyone work to their best potential. But I also believe in achievable goals. Making a plan to reduce the behaviors would be great--but not to start with 100 per cent success! Not recognizing the work she has done in the past 7 years is also unfair.  For this and a myriad of other reasons I have refused to sign off on the plan in its present incarnation and there is a meeting in early February to discuss it. I have red inked it and sent it back so that the whole team know my concerns and so that we can work together on a healthy and amicable plan.

When I shared the above example with my wife she was furious on Fiona's behalf. She pointed out that she herself has a Viking temper and could not guarantee that SHE  and fully functioning non disabled individual could agree to respond to a calming activity if she was really upset. She was angry because she knows there are things she (my wife) has changed about herself since 2006 and that she would be upset should they go unrecognized.

I said that it was nice to know she was in my corner on this as I knew that she didn't feel the same level of commitment to Fiona that I do.  It is sort of the elephant in the room in our relationship. When Fiona had to be removed from our home, my wife was so upset, so scared, that she took a giant step back emotionally and never really stepped forward again.  The doctors determined Fi could not live with us, agencies made contact difficult.  In many ways it was easy for her to step back.

I wasn't personally scared when Fiona's incident happened here  and that probably played a big role. I was scared for the kids, but not myself.  I am tall, and a second degree black belt.  But for the other kids emotional well being, yes, I was scared.

I am also an incurable optimist.  I believed then and I believe now, that by being there with and for Fi as much as the powers that be and as much as Fiona herself would allow, that some level of healing would happen. At the very least, she would see that everyone does not walk away. When the opportunity to be her guardian came, I immediately said yes, though I knew that K would not be thrilled.

I also believed that if I just kept on trying that eventually my wife would come round.  I told K that I  call it the "water eroding granite" theory.  It is essentially the same tactic that I used to help my inlaws see that I was after all a pretty nice person. I just kept constantly being nice, ignoring negatives and years later, we really all do love each other.

K laughed when we were talking and said it is not just water eroding granite.  That I am in her words, "f*ing niagara falls eroding granite."  But she is okay with it. And she has come to see Fiona in a different light.  The fact that the group home seems to judge Fiona based on very old issues that are not really relevant to her present behaviors has helped K to see that she was doing the same thing emotionally. There really is a nugget of good in all things.

Fiona's Update

More snow and it is FINALLY (caps for KC's verbal emphasis) snowman snow.  Every year we take a picture of the snowman and its makers.  Here's this years. LOL

Had a call from Fiona last night. She was crying and unhappy.  Her side is that residents don't want to include her or ignore her.  I got an email from the house this a.m. which said she was instigating and tried several times to elope from the home several times over the weekend.  They did approve my request for a weekend visit, (Friday night through Saturday evening) but wanted me to agree to "reinforce that this was contingent up on her following program rules."  Um. No.

Family is not a hostage for the program. We are not a bargaining chip.   I wrote that I was more than willing to support the team by reminding her of hte importance of following house rules. But that we had travelled this road with other institutions and when family is used in this manner it did not work well.  It did not improve her behavior and it made her feel that we just did not want to see her.

I also wrote that it was my hope that coming home and feeling connected would make it easier for her to cope with the constraints of the home she is living in.  Her world at present is much smaller than what she was used to, with only 5 other residents. If those 5 are not her friend at the moment, there is no where else to turn for company.  I also reiterated my position that she needs to have some type of activity within the community and not be bound to the house for such extended periods of time.  I suspect  the home is not lovin me right now.

Meeting G

Last night G was supposed to arrive about 4ish.  She texted me that she was running late--still at the house where Fiona lives. Would it be all right to come between 5:30 and 6:00 p.m?  I said sure.  6:30 and still no G.  She finally rolled in about 7:30 p.m apologizing for being late. She was caught up in details at the home and time got away from her.  No worries, I finished popping KC into bed while she made a call to break a dinner plan and then we sat down with tea to talk.

She is a woman who is passionate about what she does, and I think very very wise.  I've had some concern's about Fiona's new home and not surprisingly, G does too.  The administration at the home have been unwilling to share much data with me because I do not have the hard copy of the guardianship award to show them.  I have emails from the legal staff but this was not enough for them. They have refused to share med schedules and their daily plans for Fiona. They have stalled on sharing her approved contacts list.  The list goes on.

I explained this to G and she I think must have set them straight today as suddenly my in box was FLOODED with communications from the staff.  Suddenly they are eager to set up a February meeting, they are still going to work on the risk management team meeting, they had papers for me to sign and med schedules to review.

G and I are both concerned by how dull Fiona's day seems when we look at what is going on there.  When we toured, Fi and I were told that she would have a structured day program outside of the home.  That has not happened. There may be a good reason,but substituting movies and puzzles is not a reasonable or healthy therepeutic option.

I am equally concerned by diet.  Fiona is pre-diabetic and diabetes runs in her family.  She has successfully controlled this with eating healthy choices.  The home seems unaware of how to offer healthy choices.  Lots of take out Chinese and pb and fluff sandwiches. . . "because the ladies like them."

G really wanted a feel for who Fiona is as a person. I showed her pictures and some of her art work and said how much I hope that we can find a way to foster that creative spirit within her.  It is something she loves and something she is good at.There almost isn't an art form that would interest her.

I know she wants a job and I shared that with G.  It seems that there should be some type of mentoring for a job at least explored.  There are things I am convinced she could do for a short period of time (2 to 3 hrs) daily.

Basically G gave me the go ahead to be the squeaky wheel.  She suggested that I find out who her Rogers monitor is, who her rep payee is (G is quite certain it should not be the agency that runs the home) and get a current list of upcoming doctor appointments.  Even if I can not attend all of them, attending a few here and there will help me stay very much in the loop and not hear things through the lens of how the home staff want me to view things.  She also very much understood what I was saying when I explained how the home wants to eliminate contact with staff from the Great School and why this was not a healthy model for Fiona. She agreed that it was a very old behavioral model and not one we need to follow. She and I both are in agreement that former staff have very much taken on the role of close friends and quasi family in Fiona's mind.  She has had enough ripped away from her. We need to show her that people do not disappear.

G could see the pictures of all the kids on our walls, all their art mounted around the house. It was clear that Fiona was central to our lives.  She will only be on the case for about 6 months and then it will transition to a person in a local office in my city.  But in these transition months I am going to learn all I can from her so that I can make sure Fiona gets the level of care she needs and the best possible life she can live.  G left my home at just before 10 p.m.  I have struck gold and found someone with the dedication and expertise of Jane to help down this next new bit of road I walk.

We are Family Forever!

I got a call from Amazing Jane today at work. She said she had gotten an email from Fiona's former DCF caseworker saying that I was legally appointed her guardian on December 31st!  I am really excited that this has happened.  Of course, tonight, Fiona called and she was very upset with the staff and the other house members and was not at all having a good day.  I am not sure how much is her mental health issues and how much is some things that need to be addressed, but at least now, I feel that i can email and call staff and speak from a position of team member instead of the quasi interloper kind of thing. Hopefully Fi will be home this Saturday for a visit.  I'd like her to help me plan a way to celebrate this.  Maybe pick a restaurant that she loves for a special dinner out and invite Amazing Jane and Fiona's friend O who now also lives in our area?

Saturday for the sickie

Ugh!  I came home from work ill yesterday.  This rarely happens.  I am pretty healthy (knock wood) by nature. Even sick children routinely gravitating to my bed during their punk times does not usually infect me.  Alas, the dreaded stomach bug found me yesterday.  KC had this over a week ago so I am pretty sure I didn't get it from him.  More likely from one of my coworkers as we were all sharing holiday goodies in the office together the past several days.

By noon I was home, tucked in bed and most of the day and the evening are a blur.  Rob did a first rate job stepping up and helping with the littles. Cooked them supper right on schedule, got Lissa her shower.  Truly it was amazing.  In the midst of it all, feeling dizzy and fuzzyheaded, the phone rang and it was the program director for Fiona's new home.  She is working together a plan for Fiona and needed my input.

Despite the fact that it was hard to focus, this was a good conversation.  It appears that due to Fi's level of chronic instability she is recommending a risk meeting which I will be able to attend as part of the team.  Robin is concerned that contact with extended family members would best be done with thereputic supports and I am fine with that.  (cousin N who has been a regular in Fiona's life is excepted from this, as are myself and my family)  But Mom J and her Krystal  and Dee  who have had very limited contacts are whom she is speaking of.

I stressed that it is important to make sure the contacts happen and that it not be a somewhere in the distant  future kind of deal.  Nor tied to behaviors and such as Fiona has no sense of time but does feel a very intense need (and rightly so) to be in contact with her family members and her friends that she has built up over the years at the great school.  Robin seemed to get that and assured me the risk meeting would happen soon after her moving in.

A potential fly in the ointment seems to be a general unwillingness to let former staff and Jane have contact with Fiona.  Robin cited Hippa and I am having a hard time understanding how making a friendly phone call as a friend violates that. I'll do some research when I am clearer minded and be prepared.  To me, it smacks more of the general rule that agencies seem to have had for Fi which was when she moved from a foster home or a facility it was "fresh start." Which sounds good in theory but what is the purpose of making connections and emotional supports if one can not take them forward through your life. Seems to me that a fresh start does not need to negate the good that has happened in one's past.

Meanwhile I am at least ambulatory today.  I have had a couple cups of tea, and about half a rice cake.  I brought the kids to the library and though that was not a lot, it was a good step forward in getting my strength back for the hustle and bustle of the holidays. And today is winter solstice, which is a special night at our house.  The shortest night of the year, but the night that holds the promise of returning light and warmth.  We eat by candle light.

Fiona's guardianship just took a jump forward

This week I got a citation in the mail regarding my petition to become Fiona's guardianship.  The citation gives anyone who wants to object to the petition until the 31st of December to notify the court of their feelings.  Fiona's mom and Fiona have also received a citation. I have worried a lot about that.  How receiving that citation would feel to Mom J.  How it would hurt and what she would feel that she should do regarding it.

Late last night, Amazing Jane forwarded me an email she had received from Fiona's mom.  It made me cry.  She wrote to Fi that she heard she was doing well and she was glad. She said she wanted to apologize for all the mistakes that she had made and all the bad choices many years ago. That she had been suffering from depression and didn't know where to turn for help, but that now she did, and was doing better.

She went on to say that she had heard that I was a very good person and would be a good guardian for Fiona.  Fi wants to call her mom with me when she moves out here and I am fine with that.  One of the things I was told by a different therapist years ago, was that if Fiona's mom could give her permission to love others, that her healing could really move forward.  For a variety of unbloggable reasons, we were not able to connect with Mom J and try to initiate this.  Jane has helped facilitate this and I am forever and ever grateful to her.  She also has supported me as I have worked to help Fi and Rob's first families see that I want them in all our lives.  There was a real rift caused by the agency that removed the children from the birth family. While the removal most definately was in their best interest at the time, the way the family was treated afterwards was punitive, belittling and flat out made a lot of them hate me.  Though I did not do those things, I was sort of an emblem of what had happened. I was white. I was, by their terms affluent.  Surely I saw them through the same lens.  It took a lot of work to help them see that I am my own person, and most importantly, that I love these kids.  And I love their families. Fiona and i both share a very similar vision of knitting together her "two families."  I see it as a big circle around the kids, Fi I think has a different mental image but the end result is very similar.

In many ways, this is the best present all of us could receive this Christmas.