Par-Tay

Maggie’s birthday is next Wednesday. Because I am having surgery Tuesday we will be in no shape for a proper celebration on the big day; hence we are having a party tomorrow in school.


I have to get he Maggie Mix 2010 cd prepared. Thanks to my niece Nina and from some of you (especially Elizabeth M) I have the songs, I just need to burn the cd’s. So the music will be set. You might be wondering what sort of themes we are having. Maggie and her teacher picked that out and I have to commend them on their very original choice.

Pirates? no! Surfing? No. Disco? no.

Maggie is having a pineapple party.

Yes, that’s right, pineapple.

Ms. Taylor(Maggies teacher) talked with Maggie about what she would like and this was the result. Why? you may ask. All I can say is why not? Maggie loves pineapple. She likes the sound of the word and she likes the texture and even the taste.

Even though she gets 100% of her nutrition from her gastrostomy tube,(“g-tube”) Maggie does get to taste certain things. The choices are very limited because of her severe allergies to so many things and her aversion to certain textures in her mouth. For some reason pineapple passes both tests. Pineapple is something she loves. Therefore, a pineapple party it is.

Maggie and I went to the party store over the weekend. I was thinking I would have to find Hawaiian or Tiki decorations and try to find pineapples that way. Au contraire. We found pineapple lights and many pineapple decorations and we bought ‘em all. Today I am going to make a pineapple upside down cake, buy some pineapple spears and order Hawaiian pizza for the party.

Other than her classmates and others from Mission High, just my mom is coming along with Steve and me. When I called to invite my mother, I told her about the theme and she said. “Perfect, I’ll wear m pineapple jacket.”

Of course she has a pineapple jacket. What 82-year-old mother of seven, grandmother of 20 and great grandmother of three doesn’t.

Maybe that’s where Maggie gets her joie de vivre.

Get yer ice cold Lemonade

I am making lemonade. You know the gig - life gives you lemons....make lemonade.

I was reeling from all the hits yesterday. My surgery tuesday to be followed by Maggie's admission to the hospital on Thursday for 10 days. I decided sitting and stewing were not acceptable, it was time for action.

I talked to my sister Ellen last night. She's a nurse and works in a surgery center that does only shoulders. I asked her about my recovery time and Maggie entering the hospital 48 hours after my surgery and she just said "NO WAY". That confirmed my thoughts and I called pulmonology first thing this AM and told them we need to put it off.. It was only a message and I haven't heard anything in return, but they can't do tests on a patient who's not there.

I told them in a "perfect world" we could put if off to the week of the 22nd which would 1)give me time to heal from my surgery and 2) put us up against Spring Break so Maggie would only miss one week of school. I noted that I don't live in a perfect world and doubted anyone would let me even visit, but a girl can hope. I promised to bring her in immediately if things became emergent, but I really do not think that's going to happen. I'd happily take the week of the 15th  if need be.

I had a brilliant idea last night. We have delayed getting our hardwood floors sanded and refinished because we can't do it with Maggie in the house. The dust would kill her - literally. Since we know we will be out of the house, we are going to arrange to have the floors done while she and I are gone. I got a bid today and it's not too bad. We will just do the downstairs for now. The guy said he can be available on about three or 4 days notice.

you can't keep a good woman down

So my lemonade is working out well. It could certainly be a little sweeter, but I'm working on it.

Dodging the Raindrops

When it rains it pours. And I just felt a drop. 

Maggie left for school this morning doing fine. The night nurse said there were traces of blood when she coughed, as there has been many mornings over the past months. Maggie was happy and anxious to get to school. Before 9:00AM the very calm and professional school nurse called to tell me there was an alarming amount of bleeding. "Alarming." That's not a word she uses very often. Maggie was still "fine" other than this rather dramatice symptom. No fever, brething fine, etc etc. We decided to wait. I called the doctors' office to report this new (but oft repeated) symptom. I jumped in the shower because I knew it was likely that would be my only chance. I checked back at school 30 minutes later and it was the same, so I went to get her. We were home by about 10:15. By noon or so it stopped and she was completely back to normal.

Maggie is fine. She's not "sick", but this is a troubling issue and one we have  wrestled with for months. It comes and goes - but it generally only "goes" with antibiotics and comes back when the course is finished.

I spoke to the doctor who thinks its time for Maggie to be admitted. I actually agree with that. We need to get to the bottom of this issue. But the timing is horrible. The doc said today or tomorrow, but I said I can't.
I am scheduled for shoulder surgery on Tuesday and I just HAVE to get this fixed. She suggested Wednesday, but that's Maggie's 16th birhtday and I can't do that to her. We settled on next Thursday Mar 4th. Maggie will be admnitted for a 10 day stay to get IV antibiotics and have a battery of tests.

That will make me 48 hours post op. After thnking about it for an hour or so I knew I could not possibly do that. I'm going to call in the morning and put it off for another week. It's been months and she's doing fine. I really think we can wait another week or two. I need to be physically strong enough to handle the extra work of having her in the hospital and need to have the stamina to go without regular sleep for several days.

Dealing with Maggie in the hospital is not easy. She is uncomfortable, we don't have our supplies at easy reach and the one to one nursing I have at home is not available. It's ironic, but she gets a lot less nursing in the hospital land those skilled treatments she needs fall to me. 24/7. It's exhausting. Trying to do this one handed will be impossible.

Hopefully we will delay things a week or so. Give some of these rain showers a chance to clear.

In the meantime, can I borrow an umbrella?

Rainy Sunday

Steve and Maggie went for a walk despite the rain. Maggie is holding her own umbrella. Somehow I think she'll stay dry.

Edit: full disclosure. Maggie was NOT holding that umbrella as I thought. Turns out my clever husband attached it to the arm of the chair with bungee cords.

Extreme Bus Rides

To protect Maggie in her wheelchair there are two belts that come up between her legs fasten on each side to keep her hips in place, and a chest harness with four buckles. Once those are secure, there is a lap belt fastens across her like a regular seat belt. Once Maggie is loaded onto the bus, the chair is strapped down to the floor of the bus and a strap is fastened around her and buckled about mid way down the wheel of her chair.


Maggie can easily remove the bottom buckles of the chest harness and the lap belt. She cannot reach the back buckles on the harness, but she is able to lift it off over her head, and does so frequently. One of the adults in her life re buckles those things about 40 times a day. She is able to but does not mess with the hip straps. I think she knows those are really holding her in place and self-preservation kicks in.

Perhaps we have been watching too much Shaun White or other daring athletes in the Olympics. Maggie is exhibiting some daredevil tactics of her own. She is extending her mastery over seatbelts to the school bus.

The driver is not amused.

She cannot reach the bus straps on the bottom of the chair, but Maggie has recently mastered the art of getting the other bus strap undone. The school nurse says that Maggie sits quietly with her hand at her side. Eventually they hear a “click”, the strap is off, and Maggie is beaming. The driver has to stop to get it back on.

Today they tried loading her on the other side of the bus because it is doubtful she could coordinate that with her right hand. Maggie is not only left handed, but, because of the nature of her cerebral palsy, the entire left side of her body is stronger than the right.

Moving her will fix it for a while, but my girlie is very persistent. And she loves to live on the edge. I guess it should not surprise me. Her brothers are involved in dangerous sports, downhill biking and rugby, respectively, and this is Maggie’s version of that.

Dude.

Going Gaga

Maggie and I started Valentine’s Day much the same way we start most weekend days. She sits in her chair in the kitchen, throwing whatever she can get her hands on and I putter about or just plop down at the table with the crossword. We always have tunes and it HAD BETTER be the Maggie Mix, which is a collection of pop tunes that we downloaded for her birthday party last year. The first song is Single Ladies, Maggie’s favorite and it continues from there. She is delighted.


Valentine’s Day was a little different from other Sunday’s, though, because we had the visiting rugby players staying with us. I kept Maggie away from the pots and pans that she likes to throw so the boys could sleep. I was cooking away preparing for the consumption of mass quantities by the guys. The music was on, but a bit lower than usual. We were enjoying ourselves even if Maggie was limited to throwing the less than satisfying dishtowels.

I heard someone coming down the stairs and said, Maggie, here comes Dad. I poured coffee into the stupid heart mug I bought and said loudly “Happy Valentine’s Day, Dad. I heard a strange voice say,” No, it’s Aaron.” Aaron went to bed earlier than everyone else the night before and was up early too. I offered him coffee but told him he could not use Steve’s cup. He did not seem phased by that. Go figure.

He greeted Maggie and she just smiled at him. I realized this pop music was playing and explained that we have to listen to this because it is the Maggie Mix. He said, “I like this Music, Maggie, this is Lady Gaga, isn’t’ it? “

Maggie’s reaction was instantaneous and delightful. When she heard him say Lady Gaga, she whipped her head around to him and grinned from ear to ear. It was as if she was saying, “Ok, you’re cool” while at the same time basking in the attention from her older brother’s friend. It was a very "teenage girl" moment and four days later it’s still making me smile

It was a moment of normalcy in my very abnormal world.


P.S. February 18 is my dad’s birthday and I miss him. He is looking down on us and smiling. However, he would not have liked Lady Gaga.

Also I need suggestions for Maggie Mix 2, because her birthday is fast approaching

Language Cop Redux

I’m sure this will not come as a surprise to any of you, but I have to weigh in on all the recent discussion in the media about the use of the “R“ word. It makes me sick. I wrote a post about this back in November 2008 (Maggie World: Language Cop, http://sfmaggie.blogspot.com/2008/11/warning-im-going-to-play-language-cop.html#links ) and I reiterate those views here. But all this recent brouhaha warrants another commentary.

Many of you will think me oversensitive because of my daughter’s disabilities. That’s fine, maybe I am, but that conclusion should not prevent you from actually thinking for yourself. Maggie does have profound disabilities, though she does not happen to have intellectual disabilities; but that is not the reason I dislike this word so. The word is offensive and dismissive and those who use it sound childish and well…….no, I won’t go there.

To update anyone who missed things here are the recent events.

1) Rahm Emanuel, White House Chief of Staff uses the term “f-ing retarded” to describe efforts of some democrats to criticize the White House over some of the Health Care reform situation. This was classless and stupid. I expect the White House Chief of Staff to comport himself with more articulate prose and to refrain from the use of profanity and other offensive terminology.

2) Sarah Palin, former vice presidential candidate, darling of the right wing and mother of a child with down’s syndrome calls for Emanuel’s resignation for his use of this term. This is overblown and stupid, though I happen to agree with her distaste for the comment.

3) Rush Limbuagh uses the term “retard” in his commentary. This is classless and Stupid

4) Sarah Palin says it’s ok for Rush Limbaugh to use the term because he was kidding. This is stupid, inconsistent and transparent.

5) Steven Colbert mocks Sarah Palin’s inconsistencies. This was hilarious.

6) SNL mocks Rahm Emanuel’s apology. This was hilarious

7) Lewis Black, who I normally adore, does a very unfunny riff on the whole debate. This was offensive and stupid.

Even though there was some good comedy, #2 through #7 never happen if Rahm Emanuel doesn’t use the word in the first place. The word needs to go.

Special Olympics is waging a campaign to get rid of the “r” word. This is something I can get behind. As I looked into this campaign further (http://www.specialolympics.org/why-the-r-word-must-go.aspx )I found that Spread the Word the End the Word day is March 3, which is Maggie’s birthday.

I always have such a hard time with Maggie’s Birthday, but this year we can DO something positive. Go to http://www.r-word.org/  and take the pledge to not use the R word and spend Maggie’s birthday spreading the word to end the word.

The morning after

Ahhh, Tuesday morning after a long weekend. I can finally relax. Maggie was off to school and I was enjoying a cup of coffee and a telephone chat with my sister. I was looking out the front window as we talked marveling at all the parking places. That never happens except on street cleaning day. OH CRAP. It is the 3rd Tuesday of the month. I hung up on my sister mid sentence and yelled for Steve. Both cars are parked on the street cleaning side and the cop was working his way down the street. I ran around looking for my purse and ran outside assuming I was too late. However, Steve managed to get to the guy before he wrote the ticket for my car. Steve’s car was already nailed. I prefer to think we SAVED $63 because we only got one ticket.

So much for the quiet morning.


It is a fitting end to a wacky weekend. The Olympics, a dinner party, a visiting rugby team, Valentine’s Day, Chinese New Year and visiting with friends. It was nonstop.

On Friday night, Maggie suddenly lost a tooth we did not even know was loose. That was freaky, but fine. At least she did not choke on it this time. Saturday was a big dinner party here with my mom, sister, brother, niece and her friend. They came over because Tim and a bunch of his rugby teammates were coming and we decided to make it a party. Just as I was putting the food in the oven, Tim called and said they might have pizza and might miss dinner. Ok, I am pretty flexible, but that was a bit much. Are six large hungry men coming to dinner after their rugby game or not? It makes a huge difference in the amount of food. I opted to cook it all anyway, because I figured they would probably eat whenever they showed up. They arrived just as we were finishing so we all moved into the living room and had a second seating for dinner. Yes, they had pizza and yes, they wanted dinner. The food was consumed. They were effusive in their praise, one saying he had not had a meal that good since Thanksgiving. That is nice, but they live in something akin to a fraternity house, cook for themselves and eat a lot of Top Ramen.

All six stayed here and on Valentine’s morning, I made 18 eggs and three lbs of bacon and a loaf of bread and sent them off to their game against USF. Steve and I spent a romantic Valentine’s afternoon at the Polo Fields in Golden Gate Park watching the match. It was very entertaining and Nevada won big. I am still unclear on all the rules of this game, but running into one another at high speeds is a huge part of it.

Monday I met some friends for lunch, which is always fun and watched the Olympics all weekend. I absolutely love the short track skating. It is so exciting. All the speed skating is great as is the skiing. After that luge catastrophe, I could not bring myself to watch that. Unlike most Americans, or at least American women, I do not like all the figure skating. I do like the individual stuff at the end, but the pairs and the Ice dancing just does not do it for me.

My friend Grace called and stopped over for a visit. She lives in New York, but is here visiting her mom for Chinese New Year. She has a new cookbook coming out in May called Stir Frying to the Sky’s Edge (check out pre reviews here (http://books.simonandschuster.com/Stir-Frying-to-Sky's-Edge/Grace-Young/9781416580577) Looks like another winner. I am going to buy a copy for next time the Rugby team comes over.

For now, I think I will just pay the parking ticket and rejoice that there weren’t two.

This little piggy went weee weee wwee wee all the way home

A certain young woman arrived from school with a broken foot plate on her wheelchair and a missing shoe and sock on the opposite foot. The shoe and sock were on the floor of the bus and the footplate was in the bag with her valentines. The screw was sheared in half. She has done this several times. I need to get a kryptonite screw to withstand the constant pressure and strength that is Maggie. I cannot even imagine how she does these things.

Here's a closeup

Unrelated photo. My son decided to take a dip in Lake Tahoe in January. That Lake is cold in the summer when you don't have to run through snow to get into it. Now the water temp has t be in the 30s, maybe 40 at most. Do you think he looks cold?

Enjoy your Friday evening folks.

Schooled

One of the many things accomplished this week was Maggie's IEP (Individualized Education Plan). That's an annual meeting of all the members of Maggie's team to discuss progress and set goals and services for the next year. As I've said before, this meeting can be very contentious for many parents but I have never experienced that. I am always amazed at the professionalism of the various disciplines involved in her education and I learn something every year. This year was no exception. Maggie's team includes her teacher, a teacher of the visually impaired, physical and occupations therapists, speech therapist, and specialists in orientation and mobility, augmentative communication (aac) and assistive technology (at). Because this is Maggie's first year in high school the members of the team changed. Only the augmentative communication specialist and the teacher of the visually impaired worked with Maggie before this year. It amazed me how well folks had learned about Maggie's complicated needs.


Maggie cannot talk at all. She never could though she used to make a lot of noise. Now that she has the trach she can't even do that. All of her education is reliant on her ability to communicate so her communication always becomes the focus of the IEP. The report by the speech therapist and augemtative communication specialist becomes very important because Maggie's progress or needs in that area will affect all the other areas. The report was thorough and helpful. As I looked at the last page I noticed it said Maggie has a "mild to moderate" receptive and expressive speech and language delay.

Mild to moderate? Really. I thought to myself she cannot talk at all, how can this be classified "mild to moderate." I wasn't challenging anything but I wondered about that. I said, "what does it take to be severe". All three of the speech people (speech therapist, aac and at) at once said "OOOOOH you'd be surprised" Of course speech and language is not limited to speaking. There are many folks who can talk but do not have the language abilities that Maggie does. Maggie understands pretty much everything anybody says so her receptive language is good and she has developed tools to express her needs and wants and uses technology to get those across.

I consider myself to the THE expert on Maggie. Turns out mom needed to be schooled a little bit. I learned again, that I'm ONE of the experts, but Maggie is very lucky to have all these highly trained professionals in her corner.

Sweet Sixteen

Maggie’s 16th birthday is on March 3. 16! That is hard for me to believe.


Birthdays for her are funny. They make me very happy and very sad. It makes me happy because we made it through another year. There were many years that I did not think she would survive. Today, though it is a lot of work to keep her this way, she is healthy and stable. It makes me sad because birthdays are a reminder of the day she was born and all the terror that came with it and the very very long road we have been on ever since.

The road one has to travel with a disabled child is different from the road with typical kids. They overlap or intersect at times, but generally it is a different path altogether.  This road is filled with amazing and lovely things that others never get to see, but it is full of rocks and potholes too. That’s ok; it’s just the way it is.

Birthdays are one of the places the two roads intersect. Everybody can relate to birthdays, but for parents like me, birthdays become a very public reminder of what will never be. She is 16. That is a milestone birthday. Kids have sweet 16 parties and get drivers licenses. Not Maggie.

And that’s ok because it’s just the way it is.

When Maggie was little the boys used to ask questions about what she would and would not be able to do when she got bigger. We just answered the questions as they arose. Not because we are such excellent parents with a developmental plan, but Rather, we did not really look forward very often and the questions from the boys allowed us to deal with the future from their perspective. I specifically recall Eddie’s concern that Maggie would never have to do chores. He offered to customize her wheelchair by attaching a broom to the bottom so she could sweep the floor

Once when Maggie was about two I stopped at a store on the way home. She was still in a car seat then. Generally, I would jump out of the car, get the stroller/wheelchair set up and then grab Maggie. For some reason that day, I grabbed Maggie first. Doing anything with her in my arms was impossible. She could not even hold her head up and it took both arms to secure her safely in your arms. I had Maggie in my arms and needed to put her down to open her stroller/wheelchair. I propped her up in the driver’s seat with one hand on her and the other hand opening the chair. As I fumbled with the equipment one handed, Tim, who was about 6 or 7 looked at Maggie in the driver’s seat and asked, “Mom, will Maggie ever be able to drive?”

Of course I knew the answer was no, but that was a loaded question. It was so far away and simply telling him so could be devastating. We tended to take things as they came and this was looking way way down the line. I looked at her in the driver’s seat and looked at him and, buying time, I said, well she is awfully short, don’t you think? He laughed and said, NO, I mean when she’s bigger

I just faced the music and said, “I don’t think so Tim.” He said why not?” as if it were a challenge to me. The boys knew Maggie was going to therapists and doctors several times a week and we were all waiting to see how far she would go. By that point, I was hoping she would someday be able to sit up on her own (did not happen) but the boys were still thinking she was going to be fine. Going for the easiest answer I said, well, she doesn’t see very well and California really does not want people driving vehicles if they cannot see where they are going. “He nodded and said, “Oh, right” That totally satisfied him, but I think he had a greater understanding after that. They have always been close and that day made them a little closer. I may have posted this picture of the two of them before, but here it is again. It is one of my favorites. He's watching tv and holding her as she sleeps.

Now Maggie is there. Maggie is of “driving” age. We are all the way down that road, she is who she is, and the boys are who they are. That’s just the way it is.

 And it’s all good.

Routine Landing

It is Monday morning after a busy weekend. It is hard to get into full swing after birthday and super bowl fun. Nevertheless, the bus arrives at 7:10AM and Maggie has to be dressed and ready with equipment on her chair just like every other morning.


I have told you before about the crazy morning routine around here. It is a whirlwind, but we get it all done. Sometimes I have to run back upstairs because I forgot this or that, but 98% of the time we are ready and waiting when the bus arrives.

My head was elsewhere this morning thinking about the things I have to do. As I loaded her chair with her talker, suction machine and oxygen tank I remembered that I had to get Steve’s car out of the driveway before the school nurse arrived. She rides on the bus with Maggie so her car stays here. She has to take the driveway all day because they have imposed 2 hour parking on my street and she would get a ticket every day. The additional task of moving the car meant I had to get downstairs about five minutes earlier. No problem. I put the wheelchair tray and pole on the front porch so I could grab them when we got outside and started down.

To get the cobwebs out I poured myself a strong cup of coffee and balanced it just so as I was pushing Maggie’s chair out onto the deck toward the elevator. I focused on the coffee because I did not want to spill it. I was amazed how easily I was able to control the wheelchair over the rise and fall of the threshold. I was outside now and something did not seem right. I took another couple of steps and stopped.

It is no wonder I was able to maneuver things so easily. The wheelchair was empty,

I forgot to put Maggie in the chair.

I froze for a minute as if to say, “What do I do now.” Then I laughed and backed the empty chair through the door and into Maggie’s room. She was lying very quietly on her bed with an amused, but somewhat perplexed look on her face. I said, “You know Maggie it would be easier to get you on that school bus if we put you in the wheelchair first. “ That cracked her up.

I loaded her up and started again. We were still down there in plenty of time. I drove the night nurse home, came back and poured myself another strong cup of coffee. Fortunately, I remembered the cup.

Sunday Morning Chat

A couple of people asked how Maggie operates her dynavox. This vidoe explains it far better than I ever could. I shot this on sunday morning.

http://www.youtube.com/watch?v=g-BewW8YMTQ&feature=player_embedded

Say what?

Maggie’s communication device is an amazing thing. It is a dynavox DV4 and has capability for unlimited speech. Maggie’s abilities fall far shorter than the dynavox, but it gives her unlimited opportunity to expand her communication. The picture shows a page of forty choices, many of which lead to other pages with 40 choices. Soon Maggie will graduate to a page with 60 choices.

Maggie and all her classmates use communication devices. They “talk” to each other all day and that is the best practice. Maggie can ask for meals, tell us when she needs changing, call mom, dad her brothers, her teachers and all of her nurses by name. Every week she shows some new level of understanding and it is quite amazing. She also loves to tell jokes using the device. She starts laughing before the questions are out and slams the button to get the answer out there as quickly as possible.

The “voice” on the Dynavox is a flat computer voice. It speaks exactly what is written. Stray punctuation or typos are spoken. It definitely makes you cock your head when you hear the word “comma” spoken mid sentence. Also spelling or uncommon words or names must be phonetic. Maggie has classmates named Grimaldy, Cui-ping and Tyre. These are not recognized by the dynavox and I have to spell those Grimaawldee, chow peng, and Tie ray for correct pronunciation.

Every school day Maggie shares her “news” from home and brings back news from her school day. This, of course, requires programming time. It is not difficult at all (though I am still the only one in the house who knows how to do it), but it takes about 10-15 minutes. I need some of that time to come up with something clever. Midweek news is the hardest because there is generally nothing to report. I never let the facts, or lack thereof, get in the way of a story, though, so I can generally come up with something. News on Monday and Friday is easy because we can talk about the past or upcoming weekend.

This morning Maggie’s news was about the super bowl. She is informing her classmates that we are rooting for the New Orleans Saints (all due respect to Colts fans, but it is just time). You really have not lived until you hear a computerized voice with zero inflection say:

WHO DAT!

Celebrate in triplicate

Maggie’s birthday is in a couple of weeks. Birthdays are often difficult for parents of disabled children because it is like a flashing billboard reminding us of how different our kids are from their non-disabled peers. That is not so much the case with me anymore, but it was for several years. I still dislike her birthday time, for other reasons. In Maggie’s world birthdays mean more than gifts and celebrations, it is time to check in with all the service providers to renew, update tweak or even discontinue services. And Happy Birthday to you too.


This started yesterday with our visit to the doctor at California Children’s Services (CCS). This one is actually semiannual. The physical and occupational therapists give their report on Maggie’s progress toward her goals, set new goals for the next six months and recommend the frequency of service. The PT recommended cutting her therapy in half. I think that is a crock, but I did not fight it. The budget is in tatters in California and I am not sure what benefit she would get from someone who does not want to work with her.

I can accept the fiscal realities. Everybody is feeling the pinch, and Maggie is no different. What I will NOT stand for, however, is having reports contain inappropriate or incorrect information to justify cutting services. Maggie’s web of services is so complicated that a wrong piece of information at point A can be plugged in at point B and screw up more pressing services. The PT gave me his draft report and I had him change it to be accurate. If he can justify cutting services with correct information, I would not fight him. I do not agree with it, but I have to choose my battles.

Monday is Maggie’s IEP, (Individual Education Program) meeting. This is the school district’s mandated annual meeting to address Maggie’s educational needs and what services the school district will offer to meet those. For some parents this is a very contentious meeting. That has never been my experience and I do not expect it will be this time either. There may be some cuts here and there because the San Francisco Schools are B R O K E, but I am more interested in the program as a whole. There are no transitions this year, so I expect it will be fine.

After the school district, I have to meet with Golden Gate Regional Center (GGRC) for Maggie’s annual review there. I cannot remember the name of that document IPP – Individual program plan, I think. This addresses Maggie’s needs that are not school or therapy related. This agency has been reimbursing me for the nursing for the past couple of years. I do not anticipate any changes there either, but I do not think I will rest easy until I know that is the case. The budget crises looms large, but California is going to have to pay for Maggie one way or the other. It is cheaper and better for the state (and for Maggie) to stay at home than to live in an institution, so I doubt her care will be affected.

Because Maggie’s disabilities are so extreme, I do not have the same angst over these meetings that other parents have. Maggie’s needs are obvious and the services are in place. I do have to be vigilant that the reports are correct, though because undoing a mistake is very difficult. Agency B will rely upon incorrect or understated information about her medical needs from Agency A and the services adjusted accordingly. If it results in being offered a service we do not need, that’s easy; but more often it puts me in a position to fight to keep something she DOES need.

As you can imagine, all of this really kills the mood to celebrate her birthday. The real celebration comes when all this is complete.

This year, just for good measure, I am having my shoulder surgery the day before her birthday. I should be a barrel of laughs for Maggie.