Fiona's Program

Fiona came home for an overnight last weekend.  I set it up a week in advance and yet she arrived sans meds.  Yup. zero, zilch zippo for Saturday.  My daughter takes some very strong anti psychotics. These are not the type of thing you just skip or take late.

I spoke with the staff who dropped her off and they assured me that I would have the meds by 8 a.m. (her dosage time) "if that was what I wanted."  No, duh, I wanted her to have a psychotic episode and require an emergency hospital visit.  Unfortunately they did not live up to their promise of 8 a.m.  Nor did they get the meds to me in the one hour window which is clinically acceptable for her.  Nope. It was 9:45 a.m.when a fellow finally showed up at my door with the meds in hand and a sob story about being pulled in from a different part of the program to deliver the meds.

I wrote to the head of the group home, and the director of the program. I copied the service coordinator at DDS as well.  We were lucky and Fiona was okay, but it could easily have not been okay.  It is not fair to Fiona or our family to put us in this type of situation.  And part of me worries that if you are brazen enough to totally miss meds for a planned family visit, what goes on at the home when there is less oversight?

The head of the group home wrote back to me that he was sorry this had happened.  He went on to say her meds had been delivered incorrectly from the pharmacy and that her fish oil supplement had been missing.  Seriously???  So we don't batch the psych meds because an OTC supplement was not there?  There are three health food stores in my city.  I could get fish oil in a New York minute if need be.

Apparently I ignited a firestorm.  The head of DDS contacted me and I had to file a report with a special agency that handles cases of abuse or neglect. I have forgotten their acronym.  Also, it turned out that DDS knew of 2 incidents of med issues with Fiona at the home, so I was probably correct that this really is a serious problem.

Working the Plan!

Yesterday I met with the group home staff to review the amended behavior plan.  To their credit they had definately looked at my concerns and addressed some of them. The most outrageous things were eliminated or modified.  For instance the clause that she ride in the extreme back of the 15 passenger van was removed. They had based this "need" on an incident that happened in 2006.  Oy.  They removed the phone restrictions. I will be notified of incidents. There were several other changes from my rather lengthy notes on the original form.

They did not revise the extended time frames that they have for behavioral changes. (i.e. Fiona should exhibit a 12 month period with no instances of self harm or assaultive behavioir.)  Uh huh.  and the tooth fairy is going to drop a $20 on my pillow tonight!  It.will.not.happen.  Pollyanna i may be, but I have known Fi since she was 9 and the scope of her mental health issues make that impossible.

But the director said that these goals are primarily for the staff. So that they have a blueprint on how to handle Fiona and that they will be revised frequently.  I am not really sure I buy this, but I am willing to give it a go and see.  They have assured me that the plan and her ability to acheive the goals is not going to prohibit making other things happen for her, like getting involved in clubs or within the wider community. If they are truthful about that, then I am okay with it.

I asked about who her payee was and was informed that the director was planning to apply for this. I said that I was more than willing to do this and would prefer it.  Surprisingly (or perhaps not) the tone of the meeting got chillier then.  I was told that this could "hold up" Fiona getting to take a class she is interested in, because they wouldn't know if the funds were there. I asked how much the class in question might be.  $60.00  I said if they sign her up, they'll get a check, even if it is my money till her checks are squared away.  Seriously??? I think it far better that family manage the funds. Sorry folks. They also were not happy that I grilled them on healthy eating. PB and fluff for a pre-diabetic??  Give me a break!  They argued with me over Fiona going to spend the night at her cousin's house so that she can get her hair done.  I know her cousin N quite well. We are good friends and she has a child KC's age. Our two kids are friends as well.  N would not do anything unsafe with or around Fiona or her own daughter. She is a hard worker and an amazing parent.  I finally found out that guardianship trumps what the home staff want and that if I sign off on it they can object but can not stop unless they have empirical proof that this is not in Fiona's best interest.  Since cousin N is going to do Lissa's hair this spring, ob

I went directly to the Social Security office after the meeting.  Filled out the necessary paperwork for that but have to wait about 14 days for the confirmation letter to arrive so that I can set up her bank account.   The fellow who took the application was nice but had cubicle brain.  (my term for not having people skills)  He was the sort that asked what felt like intrusive questions to me.  Or made statements that i assume he thought were supportive but weren't.  i.e.  "so you are basically her guardian because DCF wanted you to be." NO!  I just smiled and said that was far from true but it was too complex to tie up his day.  A good friend of mine actually works at that office but he could not do the application with me because we are friends. (I also work with his father.)

Still, much was accomplished and I am relieved at that. I feel that I am juggling many balls in the air right now.  This weekend is crazy with 3 of the kids going to 2 different birthday parties tomorrow. Sunday I teach church school and Fiona comes for my wife's birthday party.

However this weekend pales to the weekend of the 21-23rd.  Stay tuned!

The Fabulous Forever Family Party!

Fiona has chosen her restaurant and the folks she wants to invite to the party. This is to celebrate the fact that legally I am now her guardian, a permanency that we have both worked long and hard for.  It is as close as she can get to adoption and we want to celebrate! Guardianship Celebration sounds weird, so I came up with the Fabulous Forever Family party!  She has decided to have this at a favorite restaurant mid day on a Saturday.  I am planning on making heart necklaces for the whole family out of sculpy clay so symbolize the love and committment we share for each other.   Love does not heal everything, but without love, you can't have healing.

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.

First World Guilt

Saturday my wife and I had a date.  She had informed me that she thought it would be fun for us to go to the mall and get pedicures together.  Adult time. No kids.  Just a chance to be together and relax.  I gulped.  The place at the mall? The one where all the chairs are by a big plate glass window where people gawk at you as they stroll by?  THAT place?  She chuckled.  Yep.

Well I am certainly not going to hurt my wife by refusing a date, so I womaned up and agreed.  But, oh, it was such a weird experience.  Not the gawking actually.  I found I didn't notice all that as much.  I found I am not much for massage chairs.  I think they  felt sort of creepy. I rediscovered the fact that I actually dislike sitting still for longer than about 15 minutes. I discovered I did love the hot rocks that got rubbed up and down your calf and over the arch of your foot.  My feet were warm, people warm I tell you!

But what I did not like and could not get past, was the creepy feeling with someone crouched on a stool below me, doing all this stuff to my feet.  All the employees of the salon are asian, and it just felt exploitative for all these caucasian women (all right I will give you one black and one latina woman came in but the vast majority were white) to be pampered and have all this attention to our feet  in this way. There was something that was both so intimate and so subservient in the relationship.

I will give you that my feet look amazing. Well as amazing as my feet could possibly look. Years of dance, years of hiking, they are sort of misshapen but hey, the polish is really super!  But despite how I love the way they look, despite loving the fact that my feet were warm for a few hours, I really don't want to go back. I want my relationships to be on more equal footing, if you can pardon the pun.