Sunday, January 26, 2014

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.

Thursday, January 23, 2014

Appalled by Di*ney!

Last night the kids were watching a show on the Disney channel.  Apparently the boy in the show is adopted.  He approaches adoptive mom as she is leaving for a trip and says he needs her help.  She says sure and he says he wants to know about his birth mother.

Immediately the mom character starts shifting around her body posture.  She does not meet the kids eye. She asks him if this can wait till she gets back from her trip. . . or when he gives her grandchildren.

I was incensed. I confess I did not watch the rest of the show so I don't know how it played out.  But I did talk with my kids about how angry it made me to walk through the living room and see that.  KC said that he was glad that I wasn't like that character. That I took his need seriously and answered his question right away. And that I didn't hide from it.

While i am glad that my kids see that, I am concerned that a far wider population probably saw that dreck.  First of all to turn anything about adoption and first families into a comedy is pretty much against my grain. While our lives have comedic moments, I don't think how we came together or what my kids lost in the coming together is comedic.

I wonder if people subliminally take away a message that this is not something you ask your family about. I wonder if parents think, hey, see people don't  like/want/need to talk about this.

Our children are fragile, wonderful and magical beings. They deserve the best of who we are and if we don't give them that by sharing all of their story, we have broken trust.

Monday, January 20, 2014

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.

Thursday, January 16, 2014

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.

Friday, January 10, 2014

Introducing G--the newest member of Team Fiona!

Last night when I got home from dance with the littles, Rob had a phone message for me.  G. from DDS had called and would like me to call back.  I tried her this a.m. from work and left a voice mail.  I tried right before lunch and left another voice mail.  I knew that this was about Fiona but did not know details.

G. finally connected with me in the early afternoon. She is a really nice person. She is from the city which originally had Fiona's DCF case and will eventually transition Fi to someone up here. But as the originating city, her office will help insure that all the proper services are in place.  How totally cool!

G. needed some help as the person who was originally going to handle this is out on medical leave.  She needed easy stuff, like the phone number for the home where Fi lives and the contact numbers and names of the director and such.  I have a "Fiona" file on my computer email so I had all of that and more.

She commented on how helpful this was, and I said that because I was Fiona's guardian I wanted to make sure I had all my facts so that she would always get the kind of care and supports that she needs.  It turned out G. did not know that I was the guardian.  I said I was but that I did not have the legal document showing it yet.  However I did have the name, phone number and address of the legal folks that took care of this in the faraway city.  She will call them as they are geographically close to her and is thinking she can supply me with this document next week.

Normally I would not be that fixated on a piece of paper, but it seems to be very crucial to me getting information from the folks at Fiona's new residence.  I emailed them asking about the day services that I was told she was going to receive.  I was told that when I send them the guardianship paper that they will tell me.  This may be some weird HIPPA reg, but I sort of think she isn't getting the services.  (since she told me she sits around all day watching movies.)  I know she needs this for her mental health.  So getting the paper sooner rather than later will help.  G. will also help find out details about services when I shared that I was unsure what level of supports she was receiving.

G hopes to be in our area on Wednesday. She has a number of appointments for other clients and wants to meet with Fiona at her home in the afternoon.  She offered to come by my house and meet with me afterwards.  I could not believe the graciousness of such an offer.  I look forward to meeting with her next week.  And tomorrow, Fi is here for the day.  We hope to go shopping, plan her guardianship celebration, make snowflakes out of paper, watch a movie and hang out.

Wednesday, January 8, 2014

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?

Polar Vortex Times

I am enjoying reading about my southern blog friends and the polar vortez.  It is cold there for them.  But guys, it is way colder here!  LOL  However, misery loves company; we are all in this together.  I am struggling with the cold personally.  I have Reynauds and can't feel my hands or toes most winter days anyway.  It is a lot more intense right now and it is sapping to my strength.  I am girding myself for things that are normal--like getting out of bed. Bed is warm.  The rest of my world?  Not so much.  But this too will pass.

On the positive side of things; I tell myself I will come out of the vortex a few pounds lighter as I am probably burning mega calories trying to stay warm.

Yesterday we made the big technological leap into Fios!  We have had a different type of phone  and internet service, a different type of TV service and a different long distance carrier.  All three of those bills added together are more than what I will pay for our new bundle.  But there is a bonus!  I can now turn on the TV!  For some reason with our old system it was hard to turn on the TV.  There were multiple buttons one had to use.  You had to check for a blue or red light on the cable box, it was way past my skill set.  (Mostly because I don't care that much about TV and i knew I had 4 kids in the house who could turn it on for me!)  But this? My personal independence has rocketed to the stratisphere.  I can turn on the television!

What can I say?  Small things rock my world. . .

Sunday, January 5, 2014

Ancestor's Legacies

Usually, my faith community is amazing  and supportive.  Today I was working in Elisabeth's classroom as a teachers assistant. This is probably one of the few classes where I have never been a lead teacher and do not know the curriculum.  I do know the fellow who was lead teacher and he is a great guy.  I like him a lot and this is not about him.

When he arrived, I asked him about the focus for the day and he said that it was about ancestors.  "Hmm," I said.  That can be kind of a loaded issue for adopted kids."  He agreed but before we could continue the conversation, kids began to arrive.

When class started, I began to relax.  The focus seemed to be on ancestors from the perspective of people of our religious denomination and the gifts and legacy of their life's work.  OK, cool, I can roll with that.  Next up was a story about a farmer and his legacy to his three lazy children.  Yup, okay with that.  Then at the end of the story, the teacher read something like this:

And I wonder what your legacy is from your ancestors. . . Do you look like your grandparents, or smile like your cousin etc etc."  

It was only a few sentences and I understand that it was not meant to hurt or harm, but it hit me like a hammers blow.  Some of my children don't know the answer to those questions.  It is not  that I don't want them to ask it.  It is that it is their right to choose when and how they want to deal with this.  KC is working hard on processing very deep feelings about adoption and his birth mother.  If that question had been read innocently in his class, he would have been devastated and likely reduced to tears.  Luckily Lissa was more interested in chatting with her BFF and not particularly attentive to the story in general.

I spoke with the teachers coordinator during fellowship.  I don't want the teacher slammed.  I know he was literally just reading a script. I know that although he knows my family is built with adoption, that this does not automatically connect the dots to 'gee this could be painful, how do we talk about this?'  Nor am I saying that we should not talk about it.  But we need to do it sensitively and with care.  She was receptive to my comments, so hopefully any further ancestral issues will be handled with a tad more care.

My ancestral legacy is that I have a tendancy to strong opinions and am not shy about sharing them! LOL

Saturday, January 4, 2014

It's Christmas Again?

Yup, it was Christmas again at our house as my inlaws came to celebrate with us today.  I was thrilled.  Last year a series of weather and health related issues kept us from celebrating and when the dust settled--well no one really wanted to do Christmas in May!  LOL

It was an amazing day.  I am often nervous about this holiday with my inlaws. I love them all dearly, but they all have more disposable income than we do.  I suspect the fact that we have kids and none of them do have something to do with things. But regardless, I always feel like our gifts somehow fall a bit short when they wheel in the latest and greatest.  Part of me knows (and genuinely believes) that it is the being together, the thought behind the gift that matter greatly.  But part of me wails (I got you gloves and you gave me __fill in blank with expensive something!)

What made today different?  There were still expensive things, but they seemed to genuinely love what we had chosen for them.  AND, they had brought gifts for Fiona.  This is huge to me.  My inlaws have had a harder time understanding our desire for a large family and Fiona's place in our family.  Yet they quietly reached out with very appropriate gifts, very similar in scope to what was done for all our other kids.

Friday, January 3, 2014

The Bathrobe Saga

My kids are funny.  They have been anti bathrobe for, well, forever!  But I got a pretty new bathrobe for Christmas and since then, KC has felt he should have a bathrobe. I pointed out that he had a perfectly usable brown dinosaur bathrobe.  He said it was too brown. Too small. Too lightweight.   I was not about to invest money in something he will likely not wear a lot.  And the fates smiled on me when yesterday a co-worker gave me a bag of clothing her son had outgrown.  Inside was--you guessed it! A beautiful nearly new bathrobe. (apparently it is not just my kids who do not wear bathrobes with any regularity!)  KC was in his glory.   Now, Miss Lissa was in a snit.

Yes, the pretty princess wanted a bathrobe.  She is even less likely to wear a bathrobe as she is more prone to being warm than KC.  So I told her she could have KC's old bathrobe.  The lip curled. "DINOSAURS?"  she asked with horror. "Really, Ooma, what are you thinking?"  Indeed.

So I said the dinos would disappear. From K's small fabric stash I cut batik hearts.  K appliqued them by machine over the offending dinosaurs.  I found red ruffle trim.  Red is Lissa's current favorite color and also the color of my bathrobe.  I sewed it on top of the bathrobe's cuffs.  To add bling, I took fabric paint and decorated all the hearts.  There is not a dino to be seen.  It will be ready for her to wear tomorrow morning.  Anyone want to place bets on how many times it is worn?  LOL

There are days when living with autism is harder than others.  The past couple days have been that way.  Chet lives and dies by a schedule.  It is  Waking up late is an anathema to him. Changing closets seasonally requires days of prep before we can actually do it. Changing things in general  causes anxiety which manifests itself in anger, frustration, loud voices and flapping.  All in all, not pretty.

We do not have heat in our upstairs where the bedrooms are.  We tried putting heat in Chet's room a couple  years ago.  He is most content when he can spend a lot of time in his room so we wanted him to be safe and comfortable.  Unfortunately, he hated the heat.  (well fortunately I guess for billing purposes)  After two years of trying to get him to keep the heat on and having him argue about it, we had the heat disconnected. I don't dare try an electric space heater as an alternative  as he keeps so much paper in his room and is unlikely to notice things being too close to a heat source.

This is fine most of the time.  The exception is when we have sub zero cold snaps like we are experiencing now.  Then it is not safe for him to stay in his room for long periods of time except for sleeping.  He refuses to cover up in a blanket or throw in the daytime, so he tends to sit in one spot and become chilled.

We have had him spend the majority of the day in our living room with the pellet stove where it is, at least for our home, relatively toasty.  He has been agitated by this.  He is fine once he settles in there, but first there is a lot of angst.  Loud, argumentative, angst.  I know his schedule and routine are how he feels he controls a world that often feels out of control to him.  But hypothermia  is not a solution!

Tomorrow is supposed to be warmer.  Thank you goddess!

Thursday, January 2, 2014

The memory file

  This is our memory folder.  It is just a sleeve we made years ago and hang in the kitchen near a big stack of 3 x 5 cards.  As things happen during the year, we grab a card, jot a sentence or two about the event or experience, and if you are anyone but me, you probably remember to date your entry.  I seem to be fairly unable to remember the dating of the entry with any degree of consistancy.  Every year, we just put the new year on the front of the folder.  This year I printed out numbers  using my scrapbook program and had them without color on the inside.  Each kid took a number and decorated it using the Zentangle concept any way they chose.  Something we did differently from traditional Zentangle was to incorporate color, but the end result is fantastic.  I love how they are all unique and yet flow together.  

It is fun to look back at the things that are important to us over the years. Entries are pretty varied, camping trips, lost teeth, training wheels coming off, piano recitals, hair cuts, spills off bikes, rainbows.  I wonder what memories we will treasure from this year?

Wednesday, January 1, 2014

Refining Systems

One of the hard things about a large family is finding systems that work. By that I mean all kinds of systems. Time management--orchestrating all the showers--mmmm, not as easy as you might think! Keeping track of where everyone needs to be--let me introduce you to our color coded giant calendar!  Laundry schedules, meal planning.  It takes a certain level of diligence as it is not easy to fly by the seat of your pants for 6 or 7 people.  Or at least, I have not successfully ever managed that.

The other thing that requires fairly regular reassessment is our storage systems as the needs change as the littles grow older.  This year represented the first year that they got more games as opposed to the big space sucking toys like doll houses and blocks.   We have spent the past few days refining some storage options, both adult and kid.  It has been remarkably easy this year.  Some years, the changes needed seem to be bigger than others.  Some years, the kids are more resistant than others.  This year, even KC (who is a mini hoarder of epic proportions) got into the spirit of it and helped reconfigure his art area and his learning center as well as the game cabinet.  We all noticed how much more peaceful the house felt as we went through these changes.  They were a good start to the new year.

Happy New Year

Happy New Year everyone!  May 2014 be filled with joy, challenges and new experiences for all.  We said farewell to 2013 last night with all the kids and Drew, Rob's best friend.  His parents and sister were away so he asked if he could hang with us.  I am never upset over having an extra kid or two (or three) in the mix.  And the idea of anyone being 19 and alone on New Years Eve was too sad to contemplate.  Drew has many similarities to my Chet, though he functions at a higher level.  Making the leap into adulthood has been hard for Drew and he is working hard to find a place for himself in that new role.  Yet in many ways, he is still a kid--loving to have wii battles with KC as much as hang with Rob.

We had apps for supper, themed to represent different regions of the US.  Every year we try new recipes and this year was no exception. Rob found a killer corn chowder recipe.  It is really really good and will definately be made again.  Pioneer Woman again rose to the challenge with salted pita crisps and a hot black eyed pea dip that Rob and I kind of shamelessly pigged out on.   There were french bread pizza slices with a variety of toppings and tiny taco bites.  All easy to eat, all yummy.

The kids did a lot of video games till about 10 and then we started watching Times Square.  At midnight we toasted with sparkling cider, Drew's parents called to wish him happy new year, Rob texted his girl friend and we all hit the hay.

Today,  I suspect that I will spend the majority of the day keeping tired littles from having giant attacks of the crankies.  But I am still enjoying the day.  As Rob steps ever closer to adulthood, I am keenly aware that some of these experiences will change in the near future. Next year,  we may be getting a call on New Years Eve or New Years Day, instead of hanging out with him playing guitar hero.