Happy Valentines Day

Maggie says Happy Valentines Day to all her friends out there in Blogland. Hope you had, have, or find someone to love.

Just a normal Wednesday

Over the past year or so I have been taking note of more and more things. Things that are not earthshaking, but "normal." It's true, in the abnormal world in which I live, there are days that are unbelievably normal.  Perhaps after so many years without normal days, I learned to appreciate and even celebrate the normal things.

Today is one of those days. 

I sent Maggie off to school looking great with her hair nicely brushed and everything where it should be. Today, Maggie is having her graduation picture taken. That's a very normal thing. 

And one I never ever thought she would experience.

Today is a good day. 

Slithering along

Today is the Lunar New Year. Gung Hay Fat Choy. It is the year of the Snake.

 And I start it with Health insurance troubles. Connection? You be the judge.

I have been communication with Anthem Blue Cross at least weekly (weakly) since the the other New Year. I have written before bout the imposed changes in the prescription coverage that is wreaking havoc with managing Maggie's care. They are requiring we jump through hoops for two of her 14 medications by utilizing their "specialty" pharmacy. However, that  pharmacy is so very special it will not work with Maggie's medi-cal coverage thereby denying her the medication she needs without a hefty co-pay. If medi-cal is involved the co-pay will be taken care of.  The will mean  ANOTHER $300/month that Maggie is somehow supposed to absorb.

I have completed forms, made phone calls and written long sad letters in an attempt to be exempted from this program that effectively screws Maggie. Forms are mysteriously "never received," phone calls go into a black hole and the letters are seemingly ignored. It is all very fulfilling for the consumer.

Over the weekend several of Maggie' meds needed to be refilled. I thought it strange that the refills weren't automatic, but sometimes things get out of sync. I called to fill four medications and talked to the pharmacist to avoid any confusion in case auto refills were pending.  The pharmacist, who I obviously know very well, gave me the news. Their efforts to renew the prescriptions showed Maggie's Anthem Blue Cross coverage was dropped effective December 31,2012.

Ummmmm. WHAT?

That, of course, does not make any sense at all. Nothing changed at the end of the year. We have paid our outrageous premiums, they covered all of her prescriptions in January, and, as noted, I have been in contact with them numerous times since January 1.

So I start out the year of the snake dealing with this bit of business. I decided it was best to hit it first thing and went through the five minute voice mail system, complete with several sales pitches, to get to customer service. After jumping through all the electronic hoops I hit a wall.  I was too early and have to call back after 8:30 AM. Silly me, I presume people in other time zones have similar problems and Anthem might accommodate frustrated customers to the East. But I was wrong - at least about the second part of that sentence.

So the year of the Snake starts the way the Year of the Dragon ended.  I am still breathing fire and they are slithering along in the grass. I have to polish up my parseltongue* and be their first caller in the New Year.

________________


*the capability to speak to snakes (parseltongue), known to be only a feature of those who are direct descendants of Slytherin. (from the Harry Potter books)

Survival of the IEP Fittest

IEP was fine, as I knew it would be. But it was exhausting too. The meeting started just as school ended. Maggie went home on the bus. The nurse was waiting for her. That gave me two hours until I had to get home and help the nurse with the lifting and procedures etc.  I told the teacher that and we muscled right through and finished in exactly two hours. I came home, helped Maggie and then took a nap for an hour.

It really is quite amazing to listen to everyone describe my daughter so accurately and so thoughtfully. One of the team members said, "Maggie continues to improve in EVERYTHING." It really doesn't get better than that. There were also lengthy discussions about Maggie's ability to lie and try to mess with test results. Of course her ability to do that tells them more about her intellect and understanding than anything.  I had to point out that if I were in a meeting with my sons' high school teachers it is unlikely they would be so excited about the student's ability to lie. But Maggie's team knows a strength when they see one even if its unconventional.

So Maggie's educational program is set for another year. Today I have to meet with the Regional Center to do her program for the non educational services.This one should be quicker though.

 Have a great weekend. It's a long one for us. Maggie gets Monday off school for Lunar New Year.

In other educational news I recently discovered I am HOMEWORK!  My blog is assigned  reading for a student at a Midwest university.

I might have to start using bigger words. .

IEP Day

Today is Maggie's IEP meeting.

If there's anyone out there that doesn't know what that means, I will explain it. For typical children, there is a curriculum set by the district or state. A child with disabilities often cannot keep up with the curriculum and needs something tailored to meet his/her specific educational needs. Every child receiving special education services has an Individual Education Plan (IEP). This is basically a road map for meeting the child's specific education goals outlining the services and accommodations the child needs.  The annual IEP meeting is the time the road map is written.  It is done by the IEP Team, which consists of those who will be working with the child or who the parents believe should be working with the child, representatives of the school district, the parents and sometimes the child themselves. (Maggie will not be attending.)

For many people the IEP meeting is a battle for services. That has never been my experience. Maggie has been very well served by the San Francisco Unified School District since she started at three years old. Perhaps that is because her needs are so extreme and her response to the teachers and therapists is so good, perhaps just because they want to do the right thing. Who knows. It's working, so I don't care.

The meeting is long, 2+ hours, and each of the people who work with her gives a report. That means the classroom teacher,  the orientation and mobility teacher, the vision teacher, the speech therapist, the AAC specialist, the physical and occupational therapists and more. Maggie has probably 10 different people who work with her. They all love her and want her to succeed and I am very grateful for their dedication.

Even though I don't expect any problems,  I am not looking forward to it. It's just a long hard meeting. This is where we take stock. I sit and listen to all her progress and realize another year has gone by. They are measuring Maggie against Maggie, as it should be. And she is always moving forward and she is extremely impressive and I am very proud.

 But I will sit in there and realize she is almost 19 years old and we are excited that she can make complex sentences, and sometimes position herself to assist someone lifting her out of her wheelchair, and that her behavior when they are changing her diaper is improving.

These are all good things.

But it's a long hard meeting..

Birthday

Hello after a brief respite. It's a crazy week for me. Lots of places to be and things to do. It seems I have meetings or appointments stacked up with little time between for posting.

Today is my birthday. I have been eating nonstop for days and really need to stop, but it's just too fun. As my friend Linda said last night, the holiday eating pretty much goes form Halloween to St Patricks Day. Almost home!

Maggie knew today was my birthday. She has been saying it on her dynavox for a few days. Mom, Wed February 6 is your birthday mom"  I made a video of her saying one of those sentences last night. This one was particularly long as she was saying goodbye to her nurse Fely for the evening and saying she would see her tomorrow on my birthday.

But the best was this card she made me at school today. The school nurse told me Maggie wrote all the sentences and she knew EXACTLY how old I was turning.  She's brilliant - or she knows how to make her "36" year old mother very happy.

I sure feel tired for 36.

SuperBowl day!

The city is posed and waiting for the game to begin. Hopefully the 49ers win and hopefully, no one goes crazy in the streets afterwards. One of those two things is very likely.

We are all set here. My mom, my brother Pat, and his wife Julie are coming over as is my friend Lori and her daughter Lily. That's perfect. A few people, but not so many that we can't concentrate on the game (and the commercials).

We have always been 49er fans, though I fully acknowledge that I am more into baseball than football. I was a die hard Niner fan when I was young. In fact my brother Pat and I went to the game where Dwight Clark made the catch. We didn't have tickets, but decided we HAD to be there and bought tickets off some kid that got us into the stadium, but didn't have a seat attached to them. We wandered for a while and finally sat down on about the five yard line, in a perfect position to see THE CATCH.

After I had kids I found it harder and harder to watch the hard hits. Tim played football for one year in high school and I sat in the stands with my eyes covered the entire time. Now that the boys are grown and won't be getting killed on the football field, I am enjoying the games more.

Of course the boys were always fans. Here's Eddie and Steve when Eddie was six months old.

When Eddie was in pre school, he had a jacket just like one that Joe Montana wore on a commercial. We pointed that out to him and from that day forward it was his "Jontana" jacket.  In the early to mid 90's, there was a defensive back for the 49ers who was also named Tim McDonald. Three year old Tim would introduce himself and tell people, "I'm Tim McDonald, but I'm not the one who plays for the 49ers."

 Oh, thanks for clearing that up, kid.

Maggie is ambivalent about the whole thing, though she will greatly enjoy the company and the revelry. When everyone cheers or gasps, she thinks it hilarious.  So she wins either way.

GO Niners!