Caution, Men Working!

It was supposed to rain like crazy today, but so far, it’s beautiful. Despite this, we are staying in today. Nonetheless, it’s been an exciting morning. We are getting the house painted and the job started this morning. We are literally stuck in the house for the morning, though. We can’t get out because there are workmen everywhere and getting the wheelchair by would require pulling guys off ladders and interrupting the scaffolding project.

This is something we have put off doing for a long time and can’t put off any longer. It’s been 13 years since we painted the house, and with the salt air and fog we get here that is a long time. It held up very well, but in the last year or so it’s been apparent that it needs help. Because the house is so high they are putting up scaffolding in front. (in the back there is a deck off the first floor that allows their ladders to get to the top.

This morning I pushed Maggie into the front room to watch the scaffolding go up. She cracked up when a workman walked right in front of the window. It’s one story up and we don’t usually see a person up close and personal like that. I told her he was just extremely tall but that was not amusing to her (I laughed of course) She just gave me that “Honestly Mother” look. I tried to catch a picture but I coulnd’t get her laughing and didn’t think it was appropriate to ask the guy to pose. But here is the view Maggie found so entertaining.

After this morning our ingress and egress of the house will not be impeded. In fact the scaffolding guys are already finished and gone. The painters know we have to get a wheelchair through there and promise not to leave anything in the way. I, of course will verify that with my own eyes before they leave today, but I am not too worried about it. The nurses will not be able to use the driveway for a week or so, but we will just have to do the car shuffle every couple of hours to avoid parking tickets. (fact of life here in SF)

Here are the “before” and “during” pictures with the scaffold and cover. ( It is the law in SF that the job be covered so that the lead paint being scraped doesn’t fly around the neighborhood.)

Big reveal in a week or so, weather permitting. Now that we're ready to to the storm seems to be arriving.

Mom's don't always know best

A disabled child often cannot participate in the things “typical kids” do. As parents, we sometimes have to go through the motions even though we know it’s not going to work. When invited to something impractical for Maggie’s ability level, I smile and say “sure,” but I know she will not be able to participate. It does not go away as they get older. It is always there and it is hard to explain, especially to well meaning people who just want to be inclusive. I have developed a specific churn in my stomach when a situation like this arises.


I felt the churning all week as discussions about the High school prom were being tossed about. Maggie at the prom? Ridiculous! The loud music freaks her out, she can’t wear a dress because of the configuration of the straps on her wheelchair. Also she can’t go alone, I would have to accompany her and that’s just not right that a parent go. It would be miserable for everyone.

Unless, by chance I am completely wrong.

This started last week when Maggie came home with a flyer advertising the Princess Project, which is a wonderful program that gives prom dresses and all the accessories to girls who cannot afford them. (http://www.princessproject.org/princess/get-a-dress/) The girls can go and pick out any dress, shoes, tiara etc, try them on and use them for their prom. When I was in the classroom on Friday one of the teachers asked if we got a dress from the Princess Project. I said, “well, I can certainly buy her a dress, but I’m not sure the prom will be happening for Maggie”

She was aghast. “Why not? All the kids go and they have a great time”. I explained my reasons and listened to her tell how great it would be. I asked if it was for everyone and she said only juniors and seniors. Maggie’s only a freshman but Juan, Tyre and Robert are all going and each wants her to come. I guess she’s the “date” of a senior – or three seniors. I smiled and said “maybe we’ll give it a try for a little while”, but inside I felt that well known stomach churn.

Yesterday Maggie and I were shopping and I asked her if she wanted to look for a prom dress. She said yes, so we went searching. One of the many problems I anticipated is finding a suitable dress that Maggie can wear. She has a young woman’s body but she is the size of a little girl. How would I find a dress in the little girls department that Maggie could wear to a prom?

Surprise surprise, there were quite a few. Many seemed very revealing, but I realized most girls that wear clothes from this department are not developed so the dresses would be fine. They would be a bit much on Maggie, however. Also, Maggie has absolutely NO sense of modesty whatsoever. A spaghetti strap dress would just give her something to pull on. Her chest would be out there for all to see.

I found a turquoise dress that could work, though it had some little girl flowers and plastic beads on it. Those came off easily. I found a scarf the same color with peace signs all over it and draped it over the dress. Maggie started signing YES! YES! YES! Ok, I said, , let’s buy it.

As we headed back to the car, Maggie kept grinning and touching the bag with the dress and scarf in it. It was as thought she was saying, “ok, I’m really going.” She was beyond delighted and I was grinning from ear to ear.

I sill don’t know how we will get the dress on with the straps in the chair (I can cut the dress if need be), or who will accompany her the night of the prom (it can’t be her mother or one of the old nurses) and I don’t know how she’ll react to the music. But I do know the churning in my stomach is no comparison the excitement in hers.

Maggie is a teenager and she can tell you.  Sometimes moms are just wrong.

Wheelchair woes

It's been a tough weekend for Maggies chair. Last night she arched in her chair and the entire head rest snapped. Her force is so strong she snapped the screws holding the thing in place. I had to cobble something together so she could use the chair today. I did a Rube Goldberg arrangement with bungie cords and bought some time. We didn't leave the house because if my repair failed, which it could at any minute, she would be screwed. She cannot use the chair without the headrest. She cannot hold her head upand I could not push her home and hold her head at the same time. Good thing school is out this week; there's no way she could go to school with the chair like this. Steve is home now and he can do the epoxy trick that will hold us until I can get it back to the Wheelchair place. You may recall I just had this fixed on the 11th of March. Perhaps it's time for larger screws and a more thorough fix.

In addition to her headrest, we are having trouble with one of the switches on the communication device. the switch is loose on the machine. Maggie needs the switch to move the dynavox to the selection she chooses. Once again elastic comes to the rescue.I put a rubberband underneath it and hooked it over the top of the machine. This lifts the switch just enough to make it work.

This carefully and highly engineered chair and computer are working only because of bungie cords and rubberbands. Impressive.

Do You See What I see?

I was so hoping the new administration in Washington would take some of the emphasis off standardized testing in the schools. Maybe they will eventually, but it certainly is not happening yet. There is federal money available to help some ailing schools in California and presumably in the rest of the country as well. However, schools that are “lowest performing” on test scores, are forced to take some draconian measures in order to get the money.

According to this morning’s SF Chronicle: (http://www.sfgate.com/cgi-bin/article.cgi?f=/c/a/2010/03/26/MNA31CK4FP.DTL)

Schools on the lowest-performing list each will be eligible for up to $2 million in federal Title I money annually for three years if they initiate one of the following reform strategies starting in 2010-11:

Turnaround model: Replace the principal and at least half of the existing staff. The new principal would have flexibility to hire and to set the school calendar and budget.

Restart model: Convert to a charter school.

School-closure model: Shut down and send the students to higher-achieving schools.

A transformation model: Replace the principal, reform instruction, increase learning time and provide operational flexibility.



Maggie’s High school, Mission High is one of those schools. However because the principal has been in place less than two years he does not have to worry about losing his job. I am glad. He is a good principal and Mission High is a vibrant community with dedicated teachers and staff. I have no idea what happens next, though I am sure the school will not close or become a charter school.

Admittedly, my involvement with the school is limited to the Special Education arena. I do not know anything about how the students do on standardized tests (other than what I read) nor do I know what is going on in the classrooms. However, this is not the dark ages. The special ed students are part of the schools’ population and Maggie’s classroom is right next to classes of regular ed students. I have met several of the teachers, and I feel safe in my assumption that they are doing the best job possible.

I can tell also you this, the energy and activity in the hallways is like that of many high schools. I see essays about Haiti and posters for student government elections on the bulletin board in the hall and read about the basketball team’s success on the court. The student body is comprised of every ethnicity known to man and I cannot even estimate how many different languages are spoken in the hallways of the school or the homes of the students. The kids are respectful and polite to me and to Maggie and her peers. During class time, the hallways are quiet and during free times, they are teeming with energetic teenagers and all the drama and angst that come with that.

I’m willing to bet the smartest kids go to good colleges and those who don’t’ achieve fail to graduate – just as in every other school in the United States. I am willing to bet that some kids get into trouble for bad behavior and do not do their homework, that others are excellent student citizens and that some parents are involved but many are not, just as in every other school. I am also willing to be that Mission High has more English language learners than many high schools and there just might be a few reasons they have not excelled on standardized tests. Despite those reasons, however, the scores are improving. It is a long road back and the school is making its way.

The federal money is needed and welcome. I am sure the school will do whatever they have to do to get the influx of resources. There certainly will not be any coming from the State of California, so it will be the only money around. I wonder, however, how long the federal and state governments will continue to use one measure - standardized test scores – to measure how well a school is doing. As a parent of a child who has never taken a standardized test of any kind (by my choice), it automatically eliminates my child from the equations.

It is not practical, I know, but these bureaucrats need to walk through some of these schools before they order ½ the teachers fired or close the whole thing down. Walk through the halls and see what I see and tell me this isn’t working.

Don't hate me 'cause I'm beautiful!

Maggie's trying our new words on her talker.Her basic sentences sometimes contain adjectives or adverbs now. Any advance is amazing because of both the physical complexities involved in maneuvering around that computer and the abstract connections required. They don't always hit the perfect chord, though. Her sentence today made the nurse and I laugh.


"Mom, I am beautiful, unfortunately"

Her beauty is just another cross for her to bear.

Chest CT

Maggie had to have a chest CT done today. This is part of the ongoing outpatient stuff we are donig to avoid a lengthy hospitalization. So far so good. This morning Maggie had to be sedated for this test, but even with all of that we were in and out in about an hour. That's a new record. We are back at home. If I knew it was going to go this smoothly I would have sent her to school afterward. Instead she's hanging out with me telling me jokes on her talker.

I still get nervous during these tests. I can't help it. We have had far too many surprises - and very few of them good - after they take a closer look. It will be interesting to see what this test shows. We are trying to get to the cause of her repeated infections. She coughs up blood all the time unless she's on antibiotics. It could be irritation that easily gets infected, but with Maggie we just never know what they are going to find. In fact the radiologist will be in for a bit of a surprise. Maggie's anatomy is all screwed up.

When she was born, her esophagus and trachea were connected, which is not supposed to be. That was fixed surgically but there is a lot of scar tissue from that surgery as well as from the tracheostomy. In addition she doesn't really have a functioning right lung. I only learned that about two years ago - a year after the trach was placed. According to the pulmonologist, the lung formed but none of the tissue within it formed. Instead of a functioning lung it's just an empty pouch; further there is no bronchial opening to that right lower area. That answered the riddle why her frequent pneumonias were always on the left side. Wasn't an answer I wanted, but that's what I got.

Whatever they tell me will not surprise me. For all I know all the lost socks in the house could be down there. I'll just put on all some protective gear when the doctor calls with the report in the next few days.

Next stop: hematology. But not for a few weeks.

I'm worn out and it's only noon. I think I'll steal a nap when the nurse arrives

Health Insurance

I never watch daytime television. I used to, but found time slipping through my fingers. This morning I had to ice my sore shoulder, which requires sitting still for 30 minutes or so. I turned on the morning news and watched President Obama sign the Healthcare Bill into law. The debate is over. This is now the law and over the next several years we will see changes for many people. It will be interesting to see how the provisions of the law are actually put into action. I know it will be expensive, but I also know it will make a change in the lives of many many people.


My family has been lucky. We have always had health insurance. However, health insurance works best when you are healthy and need it only occasionally. When Maggie was born, we quickly learned the limitation of the health insurance and the devastating effects those limitations can have on a family. The insurance we had when Maggie was born was considered quite good. However, it had a lifetime cap of one million dollars. Once the policy paid out that much, we were on our own. Maggie’s first hospitalization was 11 weeks in the NICU. The bill was $550,000. We knew that was only the beginning. She would go through that million-dollar cap in less than two years. We were trying to deal with the shock of Maggie’s complicated diagnoses and the surgical road she faced while the realization of financial ruin faced us. We were completely freaked out.

Financial ruin did not happen to us. My husband changed jobs and started over with a new insurance policy. That took the immediate pressure off us, but co-pays and non-covered things were still taking a huge bite out of our budget. When you added that to the financial hit we took when I had to stop working, it was still daunting. We had not even considered her disabilities, at this point. We were running as fast as we could to deal with the increased expenses and 50% reduction in income.

Maggie’s disabilities were becoming more and more apparent and therapy and equipment added to the financial and emotional stress. There were programs to help her, but we were still reeling. We were saved by the State of California. When she was about two years old, she was the first child in San Francisco to be “institutionally deemed.” This is a fiction that opens the door to additional programs, especially medi-cal (California State health insurance). The way it works is that a child as complicated as Maggie could easily be institutionalized. If she were in an institution, the additional state programs would be available to her. Keeping Maggie at home is an obvious benefit to her, her family and a financial benefit to the State. It is a win, win, win. In order to encourage this, the state “deems” her to be institutionalized and opens the door to those programs.

I will not lie. Meeting Maggie’s needs is very expensive, but doing it this way is better and cheaper than an institution. I am an unpaid case manager who works 100 hours a week, so I can tell you right off the bat that the state is saving a lot of money by having mom do the work. This is the price I pay to get to keep my daughter at home and it is worth it. We could not possibly have kept Maggie at home without this program. Even with it, we struggle to keep all the balls in the air.

I know there are thousands of people out there who are not as lucky as we are, they do not have health insurance or have a catastrophic illness and find their health insurance is not enough. I don’t know exactly how this new Health bill will work, and I don’t know if the cost will cripple us, but I do know that a government-sponsored program can make a difference in the life of a person and a family.

Maggie is an extreme example, but she is not unique. There are thousands of kids like her and gazillions of less extreme examples. Whatever you think about the wisdom and cost of this healthcare bill, please remember there are real people with life and death issues who may be able to survive and lead better lives because of this.