Wednesday, June 30, 2010

I'm sorry that I haven't got the pictures for you today, I had to drive 45 minutes to a specialist today, then home, then do drops and warm compress for my eye, then make dinner, do 2.5 hours of homework with my deaf daughter (Math is truly a foreign concept for her), serve dinner, holding time for one bunny, get 3 of the 5 to shower and wash hair, do 2 hours of homeschooling and research my diagnosis.  So you see, I wasn't left with much time.  I will try tomorrow. Here's what has happened to my eye.

The last 2 weeks when I have woken up I have not been able to open my left eye because of the severe pain, but usually and hour or two later it got better.  But the last three days it has gotten much worse. it doesn't go away now.  It is always worse after my eyes have been closed for a long time.   I went to my ophthalmologist, and he didn't know what it was, so today I saw a specialist.  I have been diagnosed with Epithelial basement membrane dystrophy (EBMD), map dot fingerprint dystrophy.

WHAT IT IS

ABMD is a disease or anatomical defect of the cornea which affects the ability
of the epithelium (outer "skin" of the cornea) to attach to the lower layers of
the cornea. Instead, it grows unevenly or detaches.
Some people with ABMD have no visible symptoms from ABMD. Others suffer
from moderate to severe dry eye symptoms and some experience RCEs.
Erosions can be very hard to control for those with ABMD and they often have
to use aggressive treatments to keep severe dry eye symptoms and pain
under control.Some patients with ABMD may need to pay special attention to
night eye protection to prevent erosions, or may benefit from protective
eyewear during the day as well.

Monday, June 28, 2010

I am back

Starting with this evening at the the usual Monday firehouse training...90 degrees out and the drill is burning a car!  Hot and miserable is all I can say.

The mini vacation was a huge success for the children, especially for the three older ones.  I have several wonderful photos to share with you.  It is late at the moment but I will summarize as best I can, because I understand that a few of you have been waiting for me to post again.

The older three girls had never seen a ocean before or felt sand between their toes. The first time we went to the beach was at dusk. As we trudged up the sand dunes from the parking lot, I told the girls to take their flip flops off. The moment my deaf daughter's feet hit the sand her face exploded in sheer joy and she let out a scream of delight and proceeded jump, dance and run in the sand. My other new daughter was so full of glee as she skipped down to the sea. And my oldest was the loudest of all three in her excitement.  The twins followed them going crazy.  Then the sea rushed up and caught their toes, and it was a full chorus of joyous screams of delight. The smiles and wonderment abounded. The three oldest acted as if they had just entered a magical world that they had never imagined. They couldn't get enough racing in and out of the surf (with their clothes on!).  The euphoria was amazing to watch.

And we stayed there until the sun was almost completely down. They all went to bed that night with smiles on their faces.  And for my deaf daughter, who's limited awareness of the world and it's makings was equivalent to believing that the earth was flat, has had this enlightening experiences that let her know that the earth was in fact round.  Think of the possibilities.

Monday, June 21, 2010

A quick FYI

I have been working on this for at least a week in my spare time, to get the wording correct.  I finally just sent it.  The complaint form was 4 pages, and I added a 12 page addendum of facts and dates to document that my child's Title VI Rights had been violated.  It is filed with the Office of English Language Acquisition, US Department of Education.  I can't complain much higher than that.  Although, there is always Michelle... (Obama).

Sunday, June 20, 2010

The time seems to be flying by.  Just as I complete one thing I remember 2 dozen that I haven't done.
I am trying to collect my thoughts, actions, to do lists and everything else in one place.  I have done baby steps for the past several days. Slowing down is never easy, especially when you see how much needs doing...

There have been several concerts to go to that the girls have been in. I think I counted 4 or 5, then I have been continually subbing. The two overnight birthday parties for different daughter's on different days which means also figuring out presents. I've had night duty and didn't get home until 3:30 am and got up two and a half hours later to get the girls ready for school and make lunch for me because I was substituting that day.  Imagine, taking Kindergartners to a zoo, and it was a hot day... Laundry seems to have increased lately, not sure why, perhaps there's someone else in the house I haven't counted. Then helping all the girls get or make gifts for Father's day. And those plants, I MUST remember to water them.

The brief updates for girls: the twins are becoming more 'mature' in the sense their id is coming out strongly.  A little too strong if you ask me.  My deaf daughter is doing much better in most categories. I do believe she is 'getting it'.   My daughter that I'm homeschooling is soaring ahead, and my oldest has developed into a full fledged, pain-in-the-neck, combative, disrespectful teen.  I nip it in the bud, but she doesn't have much self regulation so situations become immediately confrontational. This too shall pass, just in time for the next one to start...

Must make this short as we have been offered a practically free vacation for 4 nights 5 days, at our friend's B & B on an island.  We need to bring our own food and towels and a few other things, but it should be grand.  My newest daughters have never seen the ocean before.  We leave Wed. and there is much to do.  If I don't get a chance to post before we leave, I will post while there to share the adventure with pictures.
Until later.

Tuesday, June 15, 2010

What day is it?

I have been quite indulgent and have just allowed myself to 'relax' and not feel so compelled that I must write every night for people counting on me.

I will now try to catch up on the days missed.  Saturday was a whirlwind.  The twins had a band concert about 40 minutes away at an amusement park. It wasn't supposed to rain until late afternoon, but no one told the clouds.  Instead it rained in the morning and cleared in the afternoon!. We went early so the girls could ride on all the rides, and they did, several times on the same one. By the time the band was to play, all the rides, except two had been ridden on.  As soon as the concert started the sun came out...of course.  We couldn't waste the sunshine, so after the concert was over, they went on the two rides 3 times each that they had not been on before. I had decided early in the day that it was their day, and I wouldn't complain about the rain or my newly washed hair turning into a frizz ball, I would just say "Yes" to all they wanted to do. It was free after all.  So we arrived home about 45 minutes later, to do a quick change and off to a Bar-B-Que with the whole family. All the girls had a great time. And it was a first for my two new daughters to make and have s'mores.  Oh were they loving it!  I do believe they had at least three each.  It is a true American tradition.

Sunday, we all went to a local town street fair, another American tradition for them to participate in. There were all sorts of things for them to see and try like fresh squeezed lemonade. Squeezed right in front of them. An then there was the Dunk tank where people would throw a ball to a target and the person sitting on the platform above the tank drops into the cold water. Who knows what they thought of that, I can only imagine.

Monday my deaf daughter came home and told us about a boy that smiled and turned red looking at her. This was at the deaf school.  So I asked, "Do you like the boy?"  She turned all red and squealed and turned a way.  I persisted and signed a few more likes, kissing, sweethearts, and at each sign her face got more funny looking as she became SO embarrassed to even consider the possibility.  She was so cute and silly about the whole thing. She had us all in hysterics!

While Homeschooling my daughter today we were studying vocabulary and we came across a word, which I forget, that basically meant to re-invent oneself.  We talked about changing styles of clothes, hairstyles and several other things.  And she suddenly pops up with "I want".  "Want what?" I asked.  She wanted to take the huge risk of having her hair cut and styled, which is huge because she has never been in place that cuts hair nor wanted her bangs cut because her special Ayi at the orphanage did that for her just before she left.  Now she wants to have her hair changed and made different. So we went today.  I was a bit apprehensive of how she would react to actually having it done. When it was all finished , she was all smiles and feeling very pretty and special.  Yeah wahoo!
And we ended the night playing Go Fish with all the girls except the oldest in SIgn Language.

Friday, June 11, 2010

Well it hasn't gotten much better, but I know it will. Wednesday I went out on an EMT call.  It was for a diabetic who's glucose had plummeted and  was outside (night) combative, argumentative, and very confused. We had to chase the patient several times as they bolted and ran away.  At one point they bolted towards the on coming ambulance and towards a main road.  I took off trying to stop the patient, as I ran, for some reason I tripped and fell full blast onto the tarmac.  It was such a violent fall that I heard the others behind me gasp.  They ran up asking if I was alright and since I didn't feel anything broken I said that I was fine and kept going.  We finally got the patient settled and revived.  At that point the aches and pains and blood started showing up. The side of my right hand was shredded as was my knee. The left upper pocket where I keep my scissors and other things had been slammed into my thigh. That muscle was completely bruised. My right elbow had quite a lump, my left ankle slightly twisted, and my right intercostal muscles are pulled.  The first night wasn't too bad as was the next day.  Last night everything on the front of my body ached and or was stiff.  My hip bones were bruised my shoulder bones were bruised, every part of me was in pain. The intercostals prevent me from coughing, laughing, reaching, opening jars, without experiencing pain. I could barely move today, and I had to substitute for Kindergartners today!  I hope tomorrow is better...

I am filing a complaint with:
Equal Opportunity Specialist
Technical Assistance
US Department of Education
Office for Civil Rights
I believe, as do they that her rights may have been violated via the Title VI Act. Because...
 The following procedures should be used by school districts to ensure that their programs are serving LEP students effectively. Districts should:

·      identify students who need assistance;


·      develop a program which, in the view of experts in the field, has a reasonable chance for success;


·      ensure that necessary staff, curricular materials, and facilities are in    place and used properly;

·      develop appropriate evaluation standards, including program exit criteria, for measuring the progress of students;

My school system did not do any of the above. I hope that I will finally be able to get her services because even with the massive amount of research I have done, I'm not sure I can adequately Homeschool her.

I am still writing emails to the deaf school hoping to get my daughters program settled. They keep forgetting that she doesn't know English. I have to remind them that teaching her anything but English and Sign is useless.

On that note, this weekend is busy but I will try to keep up with the news.  And here is beautiful shot of my daughter when she went out on a shoot with her Father.

Tuesday, June 8, 2010

Debbie, thank you for your comment, and yes, I will come.

Phyllis - how strange that you had that experience of that fall, I did too, on the same day!.. They were washing the floor in the mall, near a food court, and I too did an unwilling split.  Instead of asking if I was alright, the woman who was mopping just smirked.  So I said that it was dangerous and her signs should have been more prominent - smirk.  OK I gave her a chance...I got Security on her and complained to her boss. So there!  And please come this summer, I need you, and the girls need your girls!

Kelly & 'mom to 8', yes, housework definitely adds to the stress level.  The sumer camp is good news but I'm still waiting for the official word of scholarships for everyone.

Nancy Lou, I did call today about my oldest daughter attending...I wait to her.

And Dina, thanx for the info on the coupons..

I know I complained and moaned last post, I'm sorry.  Today wasn't much lighter.  I did call  the deaf school to find out how they plan to respond to my email.  I spoke with the head, and she said that she plans to meet with the teachers to discuss my information and requests. I offered to drive there (one hour and 10 minutes) for the meeting, but she said that they should meet first, make a plan, then have a meeting with me.  OK, I'll wait, but not too long.

It is rather nice to know that I have interested people checking in on me that I don't even know.  It makes it so I don't fell I'm flying solo all the time. With so many of you all over the US, and a few abroad, I should have a reunion!  Although no one would know each other, the common denominator would be me!

Everyone in the family is doing great.  It is just me feeling a bit weary and over used.  But that too shall pass and I will soon be roaring ahead.

Monday, June 7, 2010

It was pointed out to me tonight that it wasn't fair that all the girls got to go to camp except my oldest.  I did ask about including her but they said that she was too old. I will try again this week to see if she can be included anyhow, because she still is emotionally and socially behind so being with kids a couple years younger would be fine.  I did write a very long email to my deaf daughter's teacher and the head of Admin.  I had reviewed all the work they were giving her in school and homework they were sending home, and all of it was not appropriate for someone that didn't know English, barely knew American Sign Language, was on a 2nd grade math level and  on a Kindergarten reading level.  Yet they were giving her 5th grade work in science, health and social studies.   I requested that she no longer take all of those courses until she was more proficient in in English, and to back her up to 2nd grade math. And if they kept her in 5th grade she would have to repeat, several times, and that would really hurt her self esteem. They received the email this morning, I have not heard from any of them...  This does not please me. I will contact them tomorrow.

My twins came home having had a wonderful time camping, huge bug bites and all. Their Girl Scout leader (who just received a special award from the National Council for her 40+ years in G.S.)  said my girls were the best, most well prepared campers and Girls Scouts that she had ever worked with.  Yes I am bursting with Mama pride.

I am still overwhelmed with this Homeschooling thing.  I have spent so many hours and have found way too much information that I am at a loss of where to start.  I have to think about maintaining transcripts, PSATs, SATs and other tests. I don't know about all this...  But I have to find a way to make it work for her.

I am subbing tomorrow and Wed., so I have to somehow make up lesson plans for those two days as well as attending to over due dentist appointments, doctor appointments, hearing aid appointments, a something else, oh yes, I am way over due on three very impt. doctor's appointments.  And then there is the Certificate of Citizenship papers...

I think I am a bit tired, feeling like I'm not accomplishing everything I need to, not giving enough to the children, concerned about my sisters, not being able to visit my Mother often enough, and not remembering the last time I felt free enough to feel happy.  And to make it complete, several times a day I feel like I am on fire from the inside out and I am excruciatingly burning up.  That is incredibly inconvenient when I'm trying to get things done, stay in a good mood, stay focused on a phone call or deal with a child's problem.  Getting old is the pits!

So on that cheery note, I say good night.

Friday, June 4, 2010

I write this post on the way out the door.  My dh actually asked me out on a date!  I think I remember what that's like...not sure though.  So we'll have a quiet drink and chat.  He offered a movie also but Friday nights I'm sure are crowded and I didn't feel like dealing with that.  Wow, real grown-up time with no interruptions.. It will take a bit getting used to.

Our twins are gone all weekend on a Girl Scout camp out.  That was tortuous trying to pack everything AND putting it all in plastic bags because it's supposed to be a wet weekend.  I labelled every baggy, put sets of clothes together complete with socks, raincoats boots, a medical kit with Arnica, anti itch spray, sun block, and lotion.  Speaking of Arnica, one of my twins ran head first into one of her friends at school on Friday and got quite the shiner.  So I went to school and sprayed her with Arnica, and when she got home, and before she went to bed, and this morning and the the golf ball lump has settled down with very little discoloration.  Arnica really helped me when they were toddlers...
And if any of you have Asian children that react badly to mosquito bites or any insect bite, like a normal child would have a small bump where my children's turn into a huge red itchy mountain - have I got a homeopathic spray for you!  It really works, and it's great fro poison ivy too.  It's called Tecnu, here's the site address: http://www. teclabsinc.com/storefront. cfm   remove the spaces.  The product I bought is a spray called, Rash Relief.

 Thank you for all your encouraging comments, I do so appreciate them, and they really make me feel 'wanted'.  Please keep them coming.
 I need to go now, my 'date' is waiting.  Until next time.

Thursday, June 3, 2010

I have been absent

It has become more difficult to find time to write.  I have been spent by late evening and going to bed opted out over catching up on my blog.

So briefly to catch you up so you don't think that I have deserted you... We have discovered that my deaf daughter can lip read, not English of course, but Chinese. At the dinner table the other night we were all being silly saying various fruits in Chinese and she knew exactly what we we were saying.  That is great.  Perhaps when English is more known to her, she will be able to a little lip reading with English.

My daughter that I'm homeschooling is becoming a bit bored, and who wouldn't be, with no social interactions with other kids.  So I have gathered some names and numbers of kids she knew a little bit when she was in school, and I'll get them together a few times.  I have also, finally, found the local homeschooling group.  It is over a 100 strong and it's two towns..  I spoke with one of the founders and she said there are many high school kids in it. I am so excited to find this group and to be able to get a social life going for my daughter.

The citizenship problems are starting to resolve.  And then I have to do the social security thing and the passport thing...  I hate paperwork.

Ooh, I almost forgot.  The deaf school also has a camp that's located on a lake and right after summer school my daughter will be going there and the twins and my daughter I'm homeschooling, all at no cost.  This is so wonderful for all of them to be able to have some summer fun.  Because we won't be doing anything this summer due to the financial situation.
Must run go now.  I will meet with some of the people from the homeschooling group tomorrow to find out more information.
Need to get some beauty sleep, the stress is aging me quickly.