Sunday, January 29, 2012

Fiona is in the hospital.  I suppose this is not a bad thing.  On the plus side, she requested hospitalization.   I am thinking that if this signifies a growing awareness of  when  she is losing control, and when her mental health is less stable, then it is a good thing.  It is also a good thing for me to remember that her mental health issues will always be a huge challenge.  For all of us who love her, and for my daughter herself.  When things began spiraling for Fiona last week, Jane reminded me that I could not allow my kids here at home to be held hostage by her mental illness.  This was so hard to hear and yet so wise.  I want Fiona to know always how much we love her.  I want her to know we will always be here for her. 

But there are things that love can't fix.  Mental illness is one of those things.  I need to remember always that she needs wise strong professionals in her life  I can advocate.  I will advocate.  And I need to learn as much as I can from amazing Jane in the next two years.  At that point Fiona graduates and I need to be as aware as possible of how to access services for her.

Saturday, January 28, 2012

Rockin Steady

Last night was movie night for Rob and I.  He didn't have anything particular in mind so he let me choose.  I chose  a movie called Rock Steady.  I confess that I knew the sound track had reggae music and was about a black teen coming of age and little else, but I just had a feeling it was a good fit for us.  And it was.

Rob was thrilled because it was an "R" rated movie.  His first.  I was thrilled because in the movie, the lead character has a lot of unrealistic dreams.  Money will come easy.  He will go to Hollywood and become a famous stunt driver.  He will win a $10,000 prize at stock car racing.  Rob tends toward dreaming the grandioise.  It is easier because I think then deep down there is no expectation that one must really do something to make that happen. Yet one looks like one has goals, if you know what I mean. 

As the lead character matured and learned about key things--like showing respect even when it seems silly, making amends when he screwed up, and learning that futures could be more modestly planned and still be successful, I could see a bit of a light bulb over my son's head.

One of the things I love about being an "older" parent is that I all ready know that talking at my kids is going to get me no where.  So I look for odd ball teachable moments and media is often very helpful in this regard.  I don't talk that much about the show or the book except in roundabout ways, otherwise it still comes off as preaching and any chance for the message to filter through the teen miasma is as good as gone.  More off the cuff comments seem to work well--expressing amazement at people who stepped forward to help for instance..  Comments of "oops, that was bad timing" wehn the kid did something stupid. That is about as far as I go with it.  But I find that later, he tends to bring things up and then it is okay to delve a bit deeper. 

At any rate, it was a good movie, despite the R rating which was likely do to the fact that the boys made some poor choices on how to earn money at the very beginning of the movie. But there was no violence or nudity, although there was some strong language.  However, from policing my son's Facebook viewing, there was absolutely nothing in the movie that he hasn't seen or read on the Internet at nearly 16.

Thursday, January 26, 2012

Confusion :-)

Rob's girl friend called tonight.  That was about an hour ago and they are still yakking.  LOL  I had to interupt the deep discussion to put his eye drops in his eye at 7 p.m.    He told her to hang on while I did the drops and while I was doing it he laughed and said, "Boy Ooma, women are confusing."  I laughed and told him to get used to it!

Wednesday, January 25, 2012

Growing Pains

Fiona almost did not call last night.  Jane called and said that she had gotten upset about somethiing and decided she did not want to talk to us or even to visit with us.  Jane said that normally she would not even share the last part as it was (in Jane's mind) clearly said in anger but Fiona had said it in the presence of otehr staff which meant that the whole team weighed in and felt that we should have this big talk about if she wanted us to visit or not.

Fiona has had lots of big things to deal with lately.  First family re-connections and most recently the immenent loss of her social worker.  S. is leaving on maternity leave and a new worker will be assigned.  Normally, Fi has gotten very over-worked, very inexperienced and very unhelpful workers but this is not the case with S. and her departure is a blow to my daughter.  It is another loss, and another feeling of being "passed around."

Jane said she was really sure Fi wanted to see us but that staff would like me to choose a cut off date to cancel the visit if her actions did not mellow out.  That felt really hard, but I finally said Thursday evening by 6 p.m.  Partly because I know Jane does not work on Fridays and communicationis with the school are a bit dicier when she is not in the loop.  Jane could hear my hesitation and she said that she too was sure Fiona wanted us to come, but that I needed to remember about keeping my whole family intact and not being held hostage by my daughter's mental illness.

Those were huge words to hear.  Intellectually I know this--otherwise we would not have had her removed from our house years ago.  It was clear that she was going to be unsafe and unsafe to others as well as herself.  But with her in the Great School, there is not a daily dose of dealing with the scope of her mental illness. It is easier to forget just how big that is and how hard things are for all of us when she is dysregulated.

On the positive side, Fiona stabilized and called about 40 minutes later and had a great chat. She clearly wants to see us and spoke animatedly of the things she would like to do when we arrive. We planned crafts and gym time and maybe using her video recorder.  We will see how it all shakes out.

Friday, January 20, 2012


My "real" birthday is January 21st.  I have not celebrated it on that day since I was 19.  That year my father chose to leave right after my birthday celebration.  I knew he was doing it; it was this miasma of hurt that flowed over everything that day.  But I hated it.  I hated watching the pain in my mom and my sister's faces.  I hated the fact that he thought I was not supposed to care.  The next year I could not dream of celebrating on that day.  Everything was raw and fresh.  I chose to celebrate my birth on September 9th instead.  It was my grandfathers birthday and he was someone who I loved and admired deeply.  A therapist could make all sorts of very logical connectionis about this.  They would probably be true.  My father and I don't have a relationship.  He remained close to my sister but although I tried to have a relationship with him, it didn't work out.  He moved across country and never told me.  I am not one for begging or needing to be beaten over the head to get the point, so that ended things.

My kids have   always known the story of how my "new" birthday came about.  In some ways it has been helpful to have a painful experience like that.  They have experienced greater losses than I but there is a thread of understanding  and connection that they feel because of this.

Except that KC feels it is wrong.  He spoke with Kirsty yesterday and informed her that they had to bring me breakfast in bed tomorrow. Kirsty reminded him that  the kids and I usually leave to go shopping before she gets up in the morning.  KC was adament:  "She can at least have a piece of toast in bed Mom," he said.  Kirsty reminded him that we always have a big party in September.  "I know Mom" he responded, "but this is the day she was BORN that we are talking about here."

I've not thought about my actual birthday in years.  Unless I need to renew my license it is a non issue to me. But my son's love and sincerity is so touching that tomorrow I will really enjoy my toast in bed!

Monday, January 16, 2012

Speaking Patiently

Our doctors office called today.  They wanted me to know that they had called our Health Insurer as was requested for the "peer to peer" review.  Tufts has indicated that they will again deny Lissa speech services because they feel this is the purview of the public schools.  All in unison now people let's scream "argh!"   To his credit, my Dr reminded them that we homeschool (though I know in my state I am still entitled to special ed services.)  However, it still does not make sense to me.  First of all, given my daughters age, she would not be kindergarten eligible till next year.  That is one delay.  The second is that the school system will want to do their own testing. Which will have its own, fairly slow time frame if my experiences for Chet are anything to go by.  HR at my job may be able to help once we get the paperwork.  I am hoping so.  We also have some flash cards that the speech pathologist was going to use with Lissa.  We will begin to use them here at home and I am going to do some internet research now.  I need to come up with a bunch of concrete "th" words for her.  Thumb for instance can have a good graphic with it to cue her. Likewise thin and thirsty.  I am going to make this a fun part of her schooling and see what evolves while we jump through the various beauocratic hoops that await us. 

Lissa loves to do schoolwork so I don't see this as being something she will resist.  We can play with mirrors making sure our mouths are making the right position to do the "th". (she presently does it incorrectly and it results in the "f" sound.)

In an odd reminder of patience and communication, the kids and I were shopping today for gifts for the upcoming final (can you hear me cheering at the word final) Yule celebration this coming weekend.  We were in a sporting goods store and Lissa fell in love with a pair of shoes.  By some miracle, they actually fit--she has very hard to fit feet so this is pretty cool.  Her feet had grown so the purchase was reasonable. 

The young man that I asked to measure her feet did so and then he proceeded to tell me her size.  "A th-th-th th . . . long pause. . . thirteen but right on the edge of thirteen and a half."  I waited patiently while he spoke and then thanked him and got the correct sized shoes for her to try. 

When we finished shopping, we got to the front of the store.  One register open and a looooong line.  Not a  joyful view for a mom with 2 littles who are totally done with the experience and a slightly bored teen and an autistic elder son.  When I suddenl y  heard a voice say "I am opening over here."  I looked up and the young man who helped us with the shoes was now opening a register and we were his first customers through the line. Hi speech issue was both more severe than Lissa's and more sporadic.  For the first part of the transaction, it was significant--for the second, almost nonexistant.

I told him how excited I was that my daughter had found shoes that fit so well and thanked him again for his help.  His "you're welcome," was clear as a bell.

Sunday, January 15, 2012

Stretching and Re-Connecting

Rob was invited to spend last evening at a friends house last night. We met up with his friend and his mom at a central location as though Rob and Drew are very close as friends, geographically we are not so much so!  It is funny watching a teen get ready for an overnight.  Rob got his clothes together the night before.  This means the favorite skinny jeans were packed, the favorite sports jersey, his underwear and his deoderant and aftershave. He also remembered the Tshirt he has to wear on Sunday afternoons for his volunteer job.   Conspicuously absent?  Toothbrush.  Pillow.  Sleeping bag.  Pajamas.  Good thing I thought to check in with him as to what "all packed" actually meant. LOL

Rob is always pretty blase about leave takings.  It used to bother me when he was younger.  I thought it was a sign that he wasn't connected to us.  Hadn't bonded fully.  Would never bond fully.  Sometimes even someone with Pollyanna tendancies can obcess..But with the wisdom of hanging in there and just watching, I have learned this is not the case.  I'll give you tha t the leave taking habits do appear to be partly a result of adapting to situations of his past.  But, he also spends time reconnecting very positively when he comes home.  We met up at church this morning. 

I had brought him an iced coffee as that is usually something  he gets when I take the kids for their second breakfast on Sunday a.m.s  I had also brought him a lunch to eat at his volunteer job. His eyes lit up when he saw me and the coffee.  And I know he was happy about more than the caffiene jolt as he hung around with me for nearly 20 minutes before church started.  Not saying much; mostly wanting to re-hash highlights of the football game of the night before. But smiling, joking, and standing a little closer than is his usual.

And so, years into this parenting journey, I read the whole situation differently now.  I am grateful that he has the strength and courage to step out and leave us. And the courage to believe that we will be there when he returns. 

Saturday, January 14, 2012

Health Care and Medical Judgements

I was actually going to write a much fluffier post about my kids and parties, but I have had health care on my mind a lot these past few days.  That is fairly unusual for me.  I don't go to the doctor.  I am lucky that my children rarely need more than a well visit to our family doctor.  I am blessed and I know that.It has also meant that I have not really had a lot of times in my life where I  have had to think about what insurance will and will not pay for.

 I wrote a while ago about Elisabeth being tested for her speech issue and how she was diagnosed as being eligible for at least 12 sessions of speech therapy.  We received an appointment for Monday and thought we were all set.  Wrong!  Our HMO denied the request, saying that her speech issue was not severe enough to warrent the therapy.  We are appealing, but these things take time.  In this instance, it isn't life or death.  In fact, as a tax payer, I can look to my public schools for speech therapy services.  I am entitled to them even though we h ome school.  We also received some flash cards from the clinician who did the testing and we can use those at home.  But it angers me that someone who does not know my daughter has the power to say she is not entitled to this care.

It angers me even more that my mother had to wait several weeks to even have a cardiac appointment scheduled because of issues surrounding her health care.

And it makes me insane, utterly and completely a raging babbling idiot that there are children who are denied important medical care because of cognitive delays.  I thought our society was past thinking that a dx of MR meant someone was less than human, but apparently not.  You can read the story that made me crazy here

\Cost/benefit analysis vs a human life. Compassion vs clinical judgements. I can't imagine being in the position of my child being denied a life saving treatment.  Apparently I don't have to "imagine it."  It happens.

Thursday, January 12, 2012

Pushing on to Friday!

The week is almost over and in some ways it seems to have flown by.  But I am tired.  Working 7:30 to 5 is getting old--especially since I do another 3 hours or so on average of piece work here at home once the kids are all abed.  The good news is that tomorrow we are working only until 3 p.m. as our company is closing early for the holiday.  This will be the first time in my life that I have worked for a company that gave MLK Day off.  It isn't like I am going to kick back or anything over the weekend, but it will be a bit of a breather and that  will be good.  On Tuesday my co-worker will be back and that will be a blessing.  On Wednesday my new boss will start.  That is most likely good but another kind of stress.  And I am still coming to terms with the fact that I wasan't really considered for the position and given a chance to show what I believe I could do.  Oh well, that which doesn't kill us makes us stronger.  I am all about being stronger.  Oh and my computer has a new wonky habit.  I can't see what I am typing when I am keyboarding.  I have to type blind and then hit my enter key when I am done.  It is very weird.

Wednesday, January 11, 2012

Fiona sends a message!

Yesterday I raced home from work.  I was worried because on Tuesdays Fiona calls and I have been working late.  My wife had a hair stylist appointment so Rob was watching the 2 littles for the 30 minute gap.  But that would not mean that anyone would answer the phone if she called.  So I stressed a wee bit, but was able to leave work only 30 minutes later than usual and was home in plenty of time.  We had supper and I cleaned up and there was no call. The kids used the computer to do their book request from the library.  Still no call.  Finally the phone rang and it was Jane.  She said that Fiona had gotten a letter from her first mom J. and they had spent the afternoon processing and writing a letter back.  She said at the end of it all, Fiona was just exhausted and asked to go to her room. BUT Fiona had asked Jane to call me and explain and to give her love.  That is so huge and has never happened before.  All I want is for as many people as possible to love and support my daughter.  She doesn't have to choose.  There is no contest here.  And I think she is finally getting that!  I have never wanted her to feel that I was trying to compete with her first family. Despite the forecast of snow and the fact that I have to work late again, I am smiling!

Sunday, January 8, 2012

Fiona Self Advocates

Last night  I got another email from Jane.  She wanted me to know that she had received instructions from Fiona to ask her DCF social worker to "be more strict" with her birth family.  Fiona said it hurts her when they don't follow through. This is a huge step for my duaghter who is pretty much perpetually conflicted with regards to her first family.  I am so sad they put her in this position so regularly.  But I am so heartened that she has come to this on her own.  It is important her her mental health to know who she can count on in her life.  I think that her family members probably have lots of issues and demons they struggle iwth.  I think too that they feel that there is nothing wrong with Fiona and that requests for consistancy are just roadblocks being put up by "the system."  Knowing Fiona over the past 10 years, I feel pretty confident saying that these are not unreasonable requests.  If someone told me they were coming to visit and then did not show up and did not call, I would be pretty angry too.  For Fiona, the anger and sadness these incidents cause is very difficult for her to manage.  I hope DCF hears this for the honest request for help that my daughter is asking for.  And I hope her family hears what she needs and can get their acts together.

Having an autistic moment!

Today was our first Sunday back at church since the holiday.  We did not go to services on either Christmas Day or New Years Day.  On the way home, Chet told me that Mr. M. lost a tooth.  "Someone knocked it out," announced Chet.  "Honey I hope you didn't ask how he lost the tooth" I responded.  "Remmember that some people don't like personal questions like that." 
  "Oh don't worry, " Chet answered, "I just asked how he got that hole in his mouth when he smiled and said good morning."  Yup, I feel soooooo much better!

Saturday, January 7, 2012

Catching Up!

My week at work was amazingly hectic.  I worked 7:30 a.m. to 5:00 p.m. every day.  I usually work 8 to 4.  Since I never take lunch it was flat out busy to say the least.  My co-worker is in sunny Florida for two weeks and our new manager does not start till the 17th so for most of the week I was doing alone what 3 people usually do.  At one point I had a call on the land line and a work call on my cell at the same time and it was totally surreal--seemed like a bad movie or something.  On the plus side, the days sure flew by.  And I got a ton of stuff done, though not nearly as much as I needed to, naturally.

The down side was I was home with the kids much less than usual and we all missed that.  We made up for it today with lots of fun together doing our usual Saturday things and ending our day with "dinner and a movie."  In our case, veggie burgers and fries while watching Mr. Poppers Penguins!  It was a great movie for all of us to enjoy.  Even Chet came down and shared in the fun with us. KC is going to be just like I was though--he gets very angry when  a movie deviates from what he read in a book.  He liked the movie but was really annoyed about the changes.

Tomorrow we have all day together too as my wife has her runaway day.  She was feeling her own levels of stress heighten from being alone with the kids more so she has Sunday all to herself.  And Monday night I have purchased her a spa treatment at a small local establishment. So hopefully that will keep her sane in the coming week which promises to be more of the same.

I also got a great email from Amazing Jane. It was a forwarded thread of conversation that Jane has had with Fiona's social worker regarding first family contact and future placement when at age 22 she ages out of the Great School in the City.  Jane has been very active and supportive of first family contact and has tried to facilitate a lot of positive things.  Unfortunately they often fall through because the family do not understand the need to keep their commitments to Fiona.  At this point the way things stand, the social worker is in agreement that should there be no significant change in the first family involvement and reliability she will advocate for Fiona to be placed in an adult setting as close as possible to us. 

I feel glad and sad about this.  Glad for us and the relationship that I have with my daughter. Sad because it is once again more proof that for whatever reason, a wide variety of people are not able to be there for someone who needs them.  The first family is huge--not like me who has only one sister and a couple of cousins.  There are legions of people and most of them live in the same general area.  I don't know their circumstances and I really really try not to judge.  But I know that as much as Fiona loves us, our constancy and presence also has the effect of reminding her that her blood  kin can't be counted on. That they say they will come and don't.  That they disappear without notice and without sharing why.  I know how this hurts her and I grieve for that.  But, that being said, at least if she can be nearer, she can be here on holidays, she can come for dinner she can hang out with us when we do our goofy family things.  It isn't all that she wants but it is love and support that she does value.

Wednesday, January 4, 2012

Chilly but Peaceful!

Lots of holiday music and movies make much of the "peace" of the season.  There is some peace but usually in our family, they are snippits--little teeny weeny moments that are sandwiched in by lots of hubbub, noise and barely controllled chaos.  Don't get me wrong--there really isn't anything I would change--a certain amount of chaos is good for the soul.  LOL But too much is like adding too much spice to a dish.  In our post holiday January I see a settling in our house.  The absence of all the glitz and glimmer of the Yule decorations has helped to bring a more serene atmosphere back to our home.  Last night I asked Kirsty what she put in their suppers as they were all playinig quietly in our living room.  Lissa was busy with her dollhouse.  KC was lying on th couch reading a Magic Treehouse book.  Rob was drumming.  (our drums are electornic so this is essentially quiet) It was a little surreal as we are typically a noisy tribe.  But I think the kids spirits need a pause, a little respite.  I am sure that they will be back to dancing in the front hall and singing and all the other louder pastimes that often occupy them soon.  But for now, in the chill of winter, we are pausing peacefully.

Monday, January 2, 2012

Ready to Spread his Wings!

Every year Rob goes away to camp for a week.  He loves it.  In some ways, it is a comfort zone.  The venue is familiar. Many of the counselors return year after year.  But he does not always know who is going to be there with him.  Sometimes he has roomed with a best friend.  Other years, he has gone solo and made new best friends.  He is very adaptable in that way, much more so than most other kids I know.  I suspect that part of it is a legacy from foster care.  He learned how to adapt.  He learned that being friendly worked better than other options and thankfully, this has been a more positive coping strategy for him to carry forward into his life.

I received notification from a friend about an organization where kids can work in national parks for 3, 5 or 8 week stints.  It is volunteer.  It is living in wilderness settings  The kids have teams of about 8 youth and 2 leaders.  They do things like build trails, and "guy" stuff that appeals to my Rob.  We spent the evening filling out the application together.  I was able to convince Rob that it might be best to start with a 3 week stint on our coastline somewhere.  I was pretty honest that it was all about me not having him on the other side of the country at just barely 16 years old! LOL  I said if he gets in and likes it, I am open to him being farther away next year but I  need to build up to it.  I do hope he gets to try this.  I think it will be an amazing opportunity for him.  I know the summer I spent living in a tent teaching at a Scouting camp was one of the best that I ever had.  I figure if he has a lot of volunteer opportunities he will get to try out a lot of different things and rub shoulders with lots of different people from all walks of life.  That to me should make it easier when inevitably he has to really decide what he thinks he might like to do for a career. 

All good things come to an end. . .

Vacation is nearly over and tomorrow I am back at work.  I have so loved this time with my family.  The kids and I have had a blast together. They are all a bit morose over the end of "ooma Time."  What I am glad about though, is that we made our time together count.  We made memories.  We laughed. (some of us cried but it wasn't the temper fit  extravaganza that sometimes happens. )   Today we took down our tree and though they did not want to do it, the kids got into talking about the ornaments as we packed things away.  Somehow it took the curse off the proof that Yule is really over for them.  WE also were able to buy KC his jazz shoes.  The store has been closed for the holidays and he really wanted to get his shoes before classes start again this Saturday.  He is so happy!  We also did some biking and scootering as this is the last day that the temperatures will be nice.  Boy can Lissa fly on a scooter!  KC is hoping to be training wheel free this year so he wants to practice a lot as well. 

Sunday, January 1, 2012

Holding Family Close

We have been blessed with a rare gift this January.  Temperatures today are in the 50's.  Tomorrow it will be in the teens.  Only in New England, I guess. But for today, we are revelling in the unexpected, most unusual warmth. We went for a New Years Day walk and when we came home, we took down our outdoor decorations.  Why wait till fingers and noses get numb with the cold to do it?  We really need to take down our tree but the littles negotiated one more day.  They have really enjoyed the tree this year and KC said he has to take lots more pictures of it before we can take it down.  We had a lot of stories before bed sitting or actually sprawling, on blankets in front of the tree this year.  Part of me is loathe to put it away as well, those memories are still so shining and special.

I always feel blessed  to have my family, but at this moment in time, more so.  Dear friends of mine far away in TX are facing the unspeakable tragedy of a beloved wife and mother dying far too soon and very unexpectedly.  The fact that they just moved to the state makes it all the harder.  There is nothing we can do and those of us who are their friends can only send emails of hugs and energies.  But as one of us said when I bemoaned the distance and lack of ability to do something concrete--we can do something. We can remember to hold our one loved ones a bit more tightly, to be a bit more patient, and to live each day as fully as we can.  In some ways that feels trite. In some ways, that feels comforting.  I know the wheel turns as it will, but I am a 'fixer' by nature. And not being able to 'fix' something always grates on me. But for today, I am holding my loved ones close and holding my friends close in my heart.