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.

Re-Claiming

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!

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.

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. 

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.

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.

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!