Fiona's yearly meeting

Tuesday I attended Fiona's annual ISP meeting at her group home.  It has been harder for she and i to visit the past few months. She works on Saturdays now and Sundays we are typically at church till noon and then KC is back there for youth group about 5ish.  So we have been talking a lot on the phone and keeping in touch that way.  But nothing beats face to face so I got her a coffee and got there early enough that we had time to just chat.  Her cousin had said she was going to attend the meeting as well but did not come after all.  I worried that this disappointment would impact Fiona's ability to participate in her meeting but she carried on with aplomb.

And the meeting went so well.  Fiona struggles often to stay regulated and to express herself in ways that do not involve physical outbursts.  But over the past year she has made steady and consistant progress in this regard. She has also been able to save for several big ticket items--the first saving up over $700 to go and do a wardrobe re-do. The second paying for a new bedroom set on layaway which involved 6 months of steady saving--and also forgoing the more immediate and transient pleasures that she would otherwise use her money for.

She has a job, two shifts a week at a local college doing food service work in the cafeteria.  Best of all, she is more open about sharing what her dreams and goals are, what she does or does not want to do, and does not show a lot of the body signs that  previously signalled severe anxiety.

I know there are likely to be inevitable setbacks but overall, my girl is rocking it!!  I am so very very proud of her.

Hopping On

Mid day Friday I was reasonably sure that the meeting about Fiona's proposed bunny had gone well.  I brought with me to the meeting a paper print out of the email sent to me when the group home house manager first proposed working on this.  I had circled the date, which was just over a year ago. It was immediately evident until I produced the email that this was going to be a brush off meeting.  However the tenor changed immediately when I showed the email and they took copies. The present house manager and the clinician both agreed that to recant on the promise would be seriously detrimental to my daughter.  We brainstormed ways to meet the need of Fi to have a pet and walk around the apparent no pet policy of the home.  The present house manager has a farming background and suggested an outdoor hutch.  I was on board provided they helped defray the cost by making the hutch in a woodworking shop used by some of the male participants in the facility.  (different house, but same overseeing agency)  They were fine with that.  I asked for an explicit accounting of my daughter's personal funds and am promised that I will receive this by the end of this week and that it will detail what the expenditures were.  I am sure that they were FOR her. I am also sure that intentionally or inadvertantly, deposits into the bunny fund envelope were not being made as schedule dicatated.  Fiona always asks staff before spending anything "this isn't from my bunny fund, is it?" and both the clinician and the new house manager admitted freely to this.

I will somehow scrape together money to replace the funds that were misspent so that Fiona would not lose this opportunity due to lack of cash.  I made this clear to the team that met with me.  We parted on what I thought were good terms.

Late Friday night when there would be no way to contact anyone I received an email. It was actually a forwarded email from the CFO who said it was unfortunate that the previous house manager had misrepresented the facilities policies.  He sited a number of reasons why it might not be possible to have the bunny and said I would not have an answer till Monday by days end.  The entire tone of his email is one of shock and like he heard this proposal  for the first time.

I didn't bring EVERY email to the meeting.  I brought the initial email.  Here at home I have the one detailing the house manager's conversation with the CFO and exactly what this person contributed to the discussion by way of a question he had wanted answered by me. The email clearly names the CFO and details the conversation the house manager had with him as well as the resulting query the CFO had for me.   I have also sent an email out to DDS informing them of the situation and the detriment that this scenario could have on Fiona's mental health and emotional stability.

Please stop playing, people.

Strength in the hard times

It's been a hard week.  A hard week for our nation where results show how divided we truly are.  Results that gave hate talk and injustice a seeming legitimacy.  It has been a hard week as a parent, navigating this morass.  I believe in sharing reality with my children but I also believe that we can't lose hope.  We have to believe--I have to believe--that love can and will ultimately triumph.  This is not the final decision and there is much we can do to share and spread love. Much we can do to protect the vulnerable.  We must step up and do this work.  I believe that the best of people is usually revealed in the worst situations.

On a personal level I have had a migraine for 3 days which is wearing my body and patience rather thin.  At this time of year I do more driving in darkness and the headlights are a trigger for me.  It is exhausting and I was too yucky feeling last night to attend a party that I had been looking forward to for a month or more.  End of personal pity party.

Then there have been ongoing changes and concerns at my daughter's group home.  We meet today to discuss the pet issue that had been approved by the previously approved is apparently not approved now.  Last night at 10:30 I also received a call from Fiona and an employee of the home.  Fi has been saving money for the bunny needs and had a budget and now all but 60 of the money is missing.  The group home worker and I are furious because Fiona would always ask before she spent money if this was coming out of her "bunny fund."  Fi can't read a lot and can't do math well; her budgeting strategies are using envelopes to save for things she wants and needs. She has done this several times successfully in the past, most recently saving for a large screen TV for her room.  Part of today's meeting will involve my asking for a full accounting of her expenditures from her spending money for the past 3 months. I will expect receipts and a full explanation of why the plan was not followed.

I feel a huge breach of trust and I know that Fiona does too. There have been big goals that she has worked hard on for this.  She feels that she met these goals "for nothing".  I can't blame her.  I can't ask her to trust people that I no longer trust.

And then last night I learned that Leonard Cohen had passed away.  Hallelujah is my favorite song.  I listen to a zillion different versions of that, my most favorite being Leonard himself and artists who perform it acoustically or "stripped down."  Today I will listen to it and remember that we all have gifts to give.  Leonard gave the gift of music for over 50 years.  Today my gift must be that of advocacy and accountability.

Chinese food Saturday

Today Fiona was due to come home for a visit and I wondered how things would go.  Not only did she have a stressful experience last evening, but her group home is again in transition.  The really good house manager that has been there just shy of 2 years has moved on and there are other staffing changes as well.  Whenever there is a transition it is tremendously hard for her.  Additionally, it means there is less support for her to access as she processes any feelings or concerns that come up as she reconnects with Mom J.

So I was not surprised when Fi called me mid morning, angry and confrontational.  She had been asked to not play her music loudly in the common room where others were watching TV.  She felt she had every right to do that no matter what.  Staff later told me that she was playing her music so loud the music could be heard clearly even though she was wearing her headphones.  Eeks!

While I agree that she was appropriately asked to move to another location or to lower the volume of the music the new staffer also told Fiona that if she didn't comply that she would "lose her visit."  Fiona quite rightly said that the only time her visit is jeopardized is if she has a hold.  I won't take her off site if she is that unstable but anything else, i am okay with.

However that comment from the staff was the tiny straw that broke the back of the tenuous grip that she has held on her emotions since the loss of the former house manager.  Much ranting ensued in thephone conversation and somehow she wound up telling me she didn't want a visit anyway, she didn't want me to bring spending money, and I could just leave her alone.  I explained that I would be coming with her months spending money but that she of course had a choice of seeing me or not.

By the time I got there, a more experienced staff had helped her find some calm, and gotten her to a place where she could more rationally discuss the other staff's mistake, and her own role in the incident.  I suggested that instead of coming home, that she and I go out for lunch and she agreed.

We ate at a Chinese restaurant not far from the group home.  A cute little family run place.  I had a yummy spicy tofu, and she had her favorite crab rangoons and chicken wings.  We were able to talk about her visit yesterday, happy anecdotes of her time there, concerns that she had over the transport issue, plans for future visits there with Mom J and plans for visits with us.

The best thing is that it ended well. A year ago, maybe even 6 months ago, she wouldn't have gotten things together enough to even go to lunch. Huge growth for my daughter and I am so proud.

Life Guarding

Things have been going well for Fiona of late.  She has been less violent, and more able to talk through an issue.  Sadly I expect there will be some rough patches in the near future. The house manager is leaving for another position.  This seems to happen regularly with the house managers in this home and I find it frustrating.  I get a working relationship and just as things start to level out--communications are good, mail is properly sent to me, Fiona's needs are being met. . . bang they are on the way out.  There is always a hiatus while they try to find another house manager and this is the worst of all.  People covering the house rarely know the occupants well.  They are often over worked, over tired and uninformed.  For Fi this means there are going to be hurt feelings and outbursts.  Trust me, I have been to this rodeo far too many times.

Yet if I am frustrated, I know my daughter is frightened and angry.  Tonight she called me almost manically happy which is a sure sign that she is going to crash and burn behavior wise.  The house manager called me shortly thereafter and said he had told the ladies today of his impending departure and that Fi was very angry and upset.  I said I knew as she had all ready called and told me he was leaving.  (side note she was not happy he is leaving. She is deflecting this by mentioning his departure and talking about a bunny rabbit she has been trying to acquire for about 6 months.)

I know too that for Fiona  the change in preferred staff underscore the fact that their presence there is a "job."  She is work to them. And while she needs to be there, and while I know in my heart that there are days and times when being with her is so challenging that it is really HARD work, this has to all feel really ugly to her.

Even though I have been through this many times, I don't know anyway that makes this any easier for her.  I always feel like I am trying to help her tread water till the new manager is hired and then I can at least have a sit down and try and get a feel for their style and how to enlist the best assistance possible for Fiona. But for now, back to treading water.

Sum-sum-summertime!

Summer is my most favorite time of the year.  Lissa has been counting down  the days to our first campout which is Memorial Day weekend.  The weeks before that are busy--Dance recital approaches and KC is very involved again with 5 dances and several speaking parts.  There have been extra practices and busy-ness surrounding that.

But the campout is the following weekend, and it sort of glistens out there on the horizons of our consciousness.   Much as a water starved person in the desert sees an oasis in the distance, the plans for our campout are that balm to the spirit for us.  We have never been to this particular campground, which is also something that appeals to us.  We like to try new places and we will be there with good friends.

So that is the official launch to summer.  We have a lot of fun all ready on the books so to speak.  This year we are after a 2 or 3 year hiatus returning to the community gardens.  I can't WAIT to nosh home grown tomatos!

We always go to our citys starburst festival in June, our city's summer stroll (typically KC also dances with the studio at this.  It is fun to watch the kids dance in the streets and see bystanders joining in )  We are going to NH with Fiona in June for 2 nights and 3 days.  This will be her first vacation with us and it is exciting.  We are not camping with Fi.  She is not really a camping kind of gal and I think that the fact that sometimes it is hard for her to maintain control and her need for separate space when she is upset make tenting not the best option at this particular juncture.  We will be in a condo in the Lakes region of NH. We will hopefully take a boat cruise on one of the large lakes there, visit a wildlife refuge and visit her favorite place of all--the outlet mall.  Late in June we are doing Christmas (yes you read that right) with my inlaws. It is odd but we could not all get together at the appropriate time so it will be in June and it will be fun!

July 4th we are hosting an Independence Day BBQ.  Friends and family will join us.  Later in July we are  camping with another group of friends.  My wife and Chet and Rob will be with us as well.  July is also dance camp for the littles and a weekend quick camping get away for the littles, my wife and I.  This is the famous tipi camping place so it is an easy venue and also very close to KC's favorite Christmas themed amusement park.  In July our city is having its first ever comic con and it is supposedly family oriented and the kids and i plan on attending this. KC loves to draw comics and anime so I think he will really enjoy this.

August gives us a chance to camp again with another set of friends. This is in a different campground--another new one.  This campground places us near a place that will allow Lissa to try horseback riding. She has wanted to do this for so long and most places require you to be 10. I have no idea why; I rode way younger than that!  But anyway, this one allows you to ride if you are over 8.  The princess is 9 so she and I will go riding during that campout.

There will be more. There will be movies and berry picking, laying and watching meteor showers on blankets and hopefully a mountain or two to climb.  As always the docket looks full and rich, with opportunities for new experiences and old favorites alike.  I can't wait!

Fiona's New TV

I talked to Fiona last night and she has her TV set!  She has been through many TV sets since moving to her group home.  Previous ones have typically fallen victim to her anger, swept off a table or kicked when she was not able to control herself.  I bought the first two for her (off of Craiglist so they were not new but were really nice)  After that, I told her she was responsible for the replacements of any that were damaged due to rages.  If it just died, I would replace it.  A stream of TVs have followed, found by the side of the road, found on line.  Most met very untimely fates.

Part of it is the dynamic of group home life.  Her room is the space she is supposed to go to when she is out of control.  This makes her belongings at higher risk for destruction or damage. The Great School in the Big City had amazing "time out rooms" so this happened less.  Kids could go to their rooms, but there were also these rooms scattered through the school with gigantic bean bag chairs in them where they could also go to regain composure.

So back in the late fall, Fiona called and said she wanted to buy a TV set and wanted to save her spending money for it.  She subsequently showed me the TV set she wanted and it was gigantic.  Our living room TV is 42 inches and this was bigger than that. Crazy big, but to Fi, this was the TV of her dreams.  Staff and I worked out a budget so she could save for it, but I didn't really think she would follow through.  Long term planning is so very hard for Fiona because she has no time sense. So everything feels like forever to her,   Tomorrow, next Friday, a month from now?  It is all hugely far away to her.

I am excited though because she did it!  She now has the TV.  Best of all, staff came up with a plan to mount the TV on the wall (I think with a plexi glass shield over it) so it may even be protected when she is out of control physically.

This is such a positive experience for Fi.  She saved for something; she can literally see the fruits of her efforts.  I am beyond excited!

Fiona's wisdom teeth.

Thursday  Fiona was supposed to have her wisdom teeth out.  I had arranged to meet her at the dentist. The dentist was in a city about 40 minutes from us.  I got an advance on sick time for the year at work and was waiting right on time.  Except that the staff at the group home slipped up and forgot the appointment.  I am baffled at how that happens. They had an appointment card. I had an appointment card. Our house has more people in it than the group home and we get everyone where they need to be when they need to be there.  And besides that, how do you forget something as important as a medical appointment.  The drs office told me that they had even called and left  a reminder message the day before.  When I mentioned that in my tirade discussion over the missed appointment I was told the home had no phone service for the past three days, and that Verizon was coming to fix it that day.  Which was either a signifcant health and safety concern for me or a prevarication.  I suspect the latter since I called them on their landline and all our discussions were on that line.

The error resulted in the surgery not happening and the dentist refusing to make another appointment.  My daughter has a consult with another dentist on the 14th. Hopefully the surgery will be scheduled promptly after that.

I went all the way up the food chain filing complaints regarding this.  I understand human error.  I did not get wicked upset when staff forgot that Fiona was going to the movies with us 2 weeks ago and we had to scramble around to get her to the cinema on time.  That is something I understand forgetting.  Medical things, no.  And it makes me wonder what else they have forgotten that I don't know about?

My email box has been full of communications regarding this matter since I filed my complaint and began my calling of powers that be. I am hopeful that this will show that I care. That I am vigilent and that for my daughter's sake, I am watching them with eagle eyes.

I also have toured a great potential day facility for Fiona to participate in.  When one of the group home higher ups called me to apologize again (!) I talked with her about this opportunity. She said she is taking my daughter this coming week to tour the facility. I said that I wanted to know what was being done about the mid day medication issue. The day facility does not medicate and I had communicated this to the group home after my tour. Fiona takes a mid day dose of a significant med so it is important to find out if this schedule can be adjusted. What a surprise (not!) to find out that the higher up had no idea that the program did not administer meds and that this would be something to resolve.I reiterated my desire for them to contact my daughter's psychiatrist and address the issue.

As much as this whole situation drives me batty, I wonder what happens for people who have guardians out of state or less involved.  I suspect it can't be good.