Birthday Prep, Government Style

Birthdays are hard for many parents of disabled children. Birthdays are a reminder of another year past, more milestones unmet, and for those whose disabilities started at birth, are a reminder of a very sad day in our lives. This has become easier with every passing year because it's just part of the whole deal, but it's still there. This year may be particularly rough. This year Maggie becomes an adult. That means all sorts of changes that Maggie may be ready for, but I am certainly not. For example, Maggie has her appointment with Social Security tomorrow.  Because she will be 18 on Saturday it's time to get her into the system.

 I spent over two hours completing her Adult Disability Report. Yikes! It's an online report that certainly does not consider a person as involved as Maggie. I had to list ever medication, which is easy enough, every doctor, which is fine but I did not include the doctors at the various hospitals because I have no idea of their names. The form also asks for every medical TEST that she has had. I'm pretty sure the internet would explode (as would my head), if I actually had to list all of them. I don't think I could even tell you all the tests she had done last year, let alone in her life. It simply cannot be done. For every test I thought of I just said this was done multiple times, which is true. Hopefully I didn't forget anything pertinent. They have more than enough information and everything else will be in her voluminous medical records which they will request.

I do feel sorry for whoever gets her file.

Tomorrow morning I take her to the Social Security Office to do the actual application. I think I could have done it online, but a lot of it is unclear when you are dealing with a person who cannot speak or sign for herself.  Once they see her, it will be a lot easier, I am sure. It's not as though there is a question that she is disabled and I suspect the intake person will have a way to expedite the forms which are basically designed to confirm disability status.

It will be good to have this done.  Anticipation is often worse than reality and I'm banking on that here.

As for the rest of the birthday melancholy - it will be buried in the festivities! Maggie is ready to party down and I am happy to join her.

Down and Out

 People are always telling me that they have a terrible cold, the flu, or any number of other ailments and I cluck sympathetically, but I never catch it. I injure myself regularly, but I rarely get ill.  Don't ask me why because it defies common sense. I am overweight, sleep deprived, sedentary, clumsy and yet extremely healthy.  I'm not complaining, mind you, just marveling.

On those rare occasions that I do feel under the weather I try to power through it because there's just too much to do. When I can't  do that I'm really not sure how to behave.  I believe that time should stop and wait for me but it never does.

Sunday night I was hit with a terrible stomach  pain and spent the evening in a ton of discomfort. I was sick. Steve and Maggie were asleep in the chair so I needed to wait to let the nurse in at 11:00PM before I could go to bed (It is impossible for Steve to answer the door when 80lb Maggie is sleeping in his lap). Finally I went to bed and slept fitfully all night.

Steve had to travel yesterday and was gone by 6AM. I got up and did the crazy morning thing and got Maggie off to school. I skipped my obligatory morning cup of coffee, which should have tipped me off that this was going to be a different kind of day. I was fuzzy and not great but not terrible. I  talked to Maggie's doctor and did a few other things. I sat down to work trying to power through this malaise, but  I could not concentrate. At around 9:15 I decided maybe I should lay down for a while.

I took my computer with me, determined to at least do my nursing paperwork that has to be in by Thursday. I set up a ton of pillows on the bed, got my cell phone and the house phone so I wouldn't have to get up. I opened my computer and tried to adjust my glasses to see the screen better. I put the computer down for just a moment. Next thing I knew the phone rang at 10:30 waking me up. Oh, I guess I was tired. I talked to the supply company that sends Maggie's food and feeding supplies arranging for a delivery on Friday. I put down the phone, glanced at my closed computer, took off my glasses and went to sleep.

I woke up at 1:30 in the afternoon! Time did not wait for me at all it just watched me sleep. Maggie's big party is Saturday, I have a gazillion things to do and I slept the day away. I feel a lot better today, but now I'm even further behind than I was.

So it's back to the hamster wheel for me and now I have to run just a little bit faster. Hope I don't fall off.

 

Blast for the Past

I have been going through old pictures and cracking up.  I found this one of Maggie in probably 1997 or 1998, making her three or four years old. We are at the Giant's Game - and this is in Candlestick, before the new stadium was completed. She was having a great time.

I should probably wait to post this for opening day of the Baseball season next month,  but I will likely forget if I don't do it now. I do miss those curls. That's Eddie with his ever present buzz cut in the foreground.

I Am Not a Crook

The budget crises in California is legendary. Everything has been cut to the bone and some things eliminated altogether. Things are much harder for disabled children then they were when Maggie was young, that is for sure. Parents have to fight much harder and pay much more for less services than were available to Maggie when she was young. From the sounds of it, things will get worse before -- or if – they ever get better.

It’s not only services for the disabled that are cut, of course. All services are effected, including police and fire departments.  A man was killed in Berkeley over the weekend because cops were only responding to emergency calls and the victom’s call to the police was made to the local number instead of  911. Ridiculous and tragic. A friend of ours witnessed an assault and called 911 but the police never responded.  After 30 minutes of bleeding,  the victim simply got up and walked shakily away over the protestations of our friend and another witness.  Now in addition to a crime, there is a public health situation because the man was dripping blood as he walked away.  In another instance a friend was “jumped” and dissuaded by the police from filing a report. Since she could never have identified her assailant, she went along with that.

If the police cannot respond to or don’t want to file a report in those situations,  all serious crimes,  someone has to tell me why a cop can make a u-turn across Geary Street, a six lane street, to cite my son for littering. LITTERING.  (Admittedly, he did dispose of a free sample of some drink inappropriately, as did 25 other people because the only trash can was locked.) Never mind, I already know the answer. This infraction is income generating while unsolvable assaults are not. The fine for littering is close to $500. That pays for the shift for the officer for the night.

I’m generally not so jaded, but it is difficult not to be.  Maggie’s school nurse was recently cited while parked in MY DRIVEWAY. We let her use the driveway everyday because there is two hour parking on the street and she is with Maggie at school for 7 hours. She would be ticketed every single day. She drives a van which just fits in the driveway. One day her car was less than an inch over the line and she was hit with a $100 ticket for blocking the sidewalk.

The second line is the key and her bumper is about 1 inch over it. Ironically, this line is the boundary to insure that a wheelchair can get by behind the car. She is parking there because of a wheelchair user and still gets tagged. We explained that in our letter to the Parking and Traffic department including this picture of Maggie getting by the car on the side and explaining that she could easily pass in the back.

I also explained that we have given up our driveway, that we have five or six nurses that care for Maggie and there is no pass available that can be shared among the nurses.  Result: tough bananas. The $100 fine stands because it is possible for us to purchase a pass for each nurse at a total cost of $500 or 600. This is after we have paid the city $200 ourselves for the privilege of parking on our own street for more than two hours at a time. 

I call foul.

It seems to me that the budget crises is being solved on the backs of the honest citizenry.  Crooks who assault people walk away because the cops don’t have the manpower to respond, but skirt a law that generates income for the city and they find a way to be there.

I am not a crook, and I’m paying for that.  

Hope Magazine

I was asked to write an article for Hope magazine, a magazine published by the Children's Hospice and Palliative Care Coalition in Watsonville, Ca.  I wrote it several months ago and wondered when it would come out. Today I received a couple of copies in the mail. I will post a link to the article when it's on the website (www.childrenshospice.org) but for now I want to share the (scanned) back cover of the magazine which has a picture of Maggie and me and short blurb by me,

My favorite part of this is the part I did not write. If you cannot read it it says:

Hundreds of thousands of children like Maggie live every day with conditions and illnesses that threaten to end their lives prematurely. Some will not survive into adulthood. Many will. Their care and that of their families is a moral priority.

Yeah. I can get behind that

Countdown begins

Maggie is turning 18 on March 3, which is almost unfathomable to me. Maggie entered this world with the deck stacked against her in so many ways; but she surprises all of us time and time again.  We decided this birthday presents the perfect opportunity to thank all the people in Maggie's World who have helped her and us get to this point.

Many people who have helped Maggie over the years will be joining us for a party on her birthday. I hesitate to write this because I could not invite everyone and had to pick and choose representatives from various parts of her life. Some parts are woefully under represented. Other parts are not. If I included everyone, I would have had to rent AT&T Park, which was a bit out of the budget. As it is, Maggie may be a bit overwhelmed that day, but I know she will enjoy herself despite the amount of people that will be there.

We are amazed at the response to this party and all of us are looking forward to it. Folks coming are not to bring gifts, but we encourage those who want to do something to make a donation to one of the organizations that have helped Maggie over the years. Those are already happening and that makes us so very happy. Thank you all who have done that.

A friend gave me the excellent idea of putting scrap book pages on the tables to give folks an opportunity to tell Maggie what they want to say. If any of you in Maggie's World want to add your comments, feel free to do so in the comments or by emailing me something and I will make sure they get into Maggie's book. If you don't want your comments published, just tell me and I will make sure it doesn't go public.

In the meantime, I have to get scrapbook pages, get pictures into frames, come up with some sort of table decorations and create a new Maggie Mix for the party. My friend Rose is doming over today to help me alter Maggie' party dress which was a gift from Maggie's friend Anne Marie. Here's a sneak peak.

Ten days to go. So much to do.

Be careful what you wish for....

Let's just get it out there. There is no pleasing me.

You have all read my various posts about Maggie being ignored or invisible to society. You've probably gagged over my gushing love of San Francisco's quirkiness. Both of those were turned a bit on their head on Saturday.

Part of San Francisco's quirkiness is the homeless population which contains far too many people with mental illness who wander the streets lost in their craziness. This is a population that sees Maggie very well and always stops to engage in conversation with her. It's fine, though a bit uncomfortable at times Saturday was definitely uncomfortable.

We decided to go to the main library to check out the selection of books for the "Visually Impaired and Print Disabled." Maggie's vision teacher arranged for her to get this book reader specifically designed for the visually impaired. It could be a great thing for Maggie but so far she has shown very little interest. It didn't help that the two books they sent were about George Washington Carver and Growing your own vegetables. I thought if we found some stories that interested Maggie she might really take to this medium and could get interested in all sorts of books.

The main library is in Civic Center. City Hall, the Civic Auditorium, the State Court building and the Asian Art Museum, all fantastic buildings surround Civic Center Plaza. It looks very stately. It is also a haven for the homeless, who have nowhere else to go. Generally the area is teeming with people because there is always something going on. Saturday was strangely quiet and the more colorful individuals, who are generally part of the background ambiance, were front and center.

First a woman in the library asked a ton of  too personal questions and sort of followed us around. She was harmless, but a bit intrusive and inappropriate. Later, a man in the audio books department told Maggie and I to watch a certain move so we could grow spiritually, emotionally, physically and mathematically(?) and every other way. OK. A close talker with strong opinions but still harmless. We were polite, but kept moving.

We decided to walk over to City Hall. As we approached there was a group of well dressed people with large bouquets of flowers waiting on the steps. They were kind of blocking the wheelchair ramp but before we asked them to move, Steve popped up the steps to see if the building was opened. It was not. I stopped pushing Maggie while Steve went to check. Big mistake.

In the moment he ran up the five steps, a woman standing with the group came bounding toward Maggie and I. I hadn't noticed her before, assuming she was part of that group. But she was not, and I dare say that group was probably relieved that we happened along to draw her attention away from them.

She was shoeless, though, curiously, she had on what appeared to be brand new socks that matched her pants perfectly. Both were bright orange. She was missing a few teeth and her bare arms, visible because she was wearing only a .tank top, were badly scarred as though she had been terribly burned at some point. She started talking to Maggie as though I wasn't there. She was squatted next to the chair holding onto Maggie's tray with her face very close to Maggie's. "Hi baby, how are you. you are beautiful. I like you." I was very uncomfortable and then she started stroking Maggie's arm. Steve bounded right back down the steps and we looked at each other sort of stricken. We don't want to be unkind, but touching is NOT ok.

The woman wasn't doing any harm but she was way past the boundary and she was kind of freaking us out, Maggie included.  I just started pushing the chair making goodbye sounds. She didn't want us to leave, telling us to slow down and where are you going.  Why are you walking away? What's your hurry?"

We just strolled along as though nothing untoward had happened. It was just a couple of minutes. I never moved from the back of the chair because I wanted to get out of there. I could not see Maggie face. When Steve came back down he was as horrified as I was that this stranger, of questionable hygiene, was touching Maggie. He told me later that Maggie was giving her the "stink eye."

 I felt sick to my stomach. It was disconcerting on so many levels. Steve and I were both bothered by this tremendously. It's so wrong that this woman has to live on the streets and it's not her fault.. She was clearly mentally ill and obviously had gone through a lot of things in her life. But it's still not ok and I didn't stop her and that bothers me tremendously.   She was not violent, but she could have been. She did not hurt Maggie, but she could have. I just stood there trying to be polite and wanting to get away as fast as I could.

After this I will not complain (for a while) about people who ignore Maggie. In fact, the next twenty people who ignore Maggie or treat her like she's invisible might just get a big kiss from me.

Because that's not inappropriate at all.