Thursday, May 30, 2013

Wednesday, May 29, 2013

I'll remember always.....

Graduation day!

Today is Maggie's high school graduation.

For all those of you who have been asking, she is not done with school. She will return to Mission high for transition, and stay there until she is 22. But today is the end of her senior year of high school. And she is going through the graduation ceremony.

Maybe it doesn't mean anything. She's not getting a diploma, but a "certificate of completion." She's not the valedictorian, she's not going to college. Maybe we should have just skipped this ceremony.

 Not bloody likely.

Maggie is not only quite aware, but quite excited by the whole thing. This is the sentence she made last night on her dynavox.



She put in her time and she wants her day in the sun just like everyone else.

Sometimes she is just like everyone else.

Cap and gown pictures to follow.


Tuesday, May 28, 2013

Transitions

Change is good. Change is healthy. Change is how we grow.

 But change is also difficult, uncertain and scary.

Accomplishing change often means hitting some bumps in the road. That's part of the journey. Once past all the bumps the journey is complete and we have new found wisdom. Unfortunately that wisdom isn't available at the beginning of the bumpy road when we need it most.

The bumpy road is the place knows at "transition." We are in the process of changing from one place to another or one system to another or one thing to another. Transition is the process of change.

I like change. But I hate transition.

I am also starting to hate the WORD transition.  Maggie graduates from high school tomorrow and enters "transition." In special ed, transition is name of the period from the end of high school until school service end at age 22. There are all sorts of transition happening now. Some of it starts at 18 when one becomes a legal adult.  Maggie did start receiving social security shortly after her 18th birthday and we completed the conservatorship process as well. California Children's service ends at 21, so Maggie transitions out of that program as well. that will effect a lot of services which we will have to reinvent.  In addition, there is the transition from pediatric to adult medical care, which doesn't have any hard and fast rules.

The term transition suggest there is something at the other end of the road, but in the world of the disabled, that is not always true. Maggie and her peers are being transitioned OUT of these services, but there is very little on the other end. Being a disabled adult is very very different than being a disabled child. There are less services, less protection, less sympathy, and more every man for himself.  

Of course there are doctors who will treat Maggie and I m hopeful that some of her pediatric providers continue for several years. I have said before that the medical world is simply not prepared for an adult Maggie because there is little of no precedent. There was simply no need for medical care because people did not survive this long. The Maggie's of even the most recent past the did not have the opportunities at survival that my daughter has had. It's wonderful that she is here and thriving, but it's scary to be a pioneer.

There are also programs for adult disabled individuals, but I am uncertain about the availability of services for the level of medical intervention that Maggie needs. So many times we have found out that services for the disabled do not consider one quite as disabled as Maggie.

So we start on this bumpy road and wonder where it leads and what wisdom we will garner on our road. There will likely be frequent rest stops on the road and undoubtedly there will be wrong turns. But we have no choice. The only way is forward along the bumpy road of transition. (Better than perdition, I suppose)

 Fasten everything loose and hold on.... Because here we go


.

 

Friday, May 24, 2013

Stunt Double!

Maggie is going to graduate next Wednesday. I won't belabor how amazing that is.

But it is. Amazing, that is.

The pomp and circumstance of graduation does not happen in a vacuum. If you want 200+ excited teenagers to go through graduation you have to practice practice practice.

Wednesday they spent most of the day learning to process in.

Thursday they spent the day learning to get up to the stage, process across, get their diplomas and sit down. Whew! that was a particularly tough day.

Friday they learned how to get off the stage and presumably how to process out. Good thing too. If they didn't learn that they would all have to spend the summer in the Mission High auditorium.

The problem is Maggie does not have the stamina to spend hours ANYWHERE, let alone in an environment of very excited seniors with blasting speakers etc. Graduation or no, Maggie still needs her procedures done every few minutes and when she needs the big ones every few hours, she's gone for 15-20 minutes at a time.

Can they get along without one of the graduates for 15-20 minutes? certainly. Are they beyond accommodating to Maggie? Absolutely.

But Maggie has an important role. No, she is not the valedictorian or salutatorian or any such thing. But she is the only one ins a wheelchair in the graduation and there are logistical issues that must be addressed in making all of these transitions. There has to be a seamless way to get the bulky wheelchair into the auditorium and on and off the stage. She will also be the only one with two adults accompanying her throughout the ceremony. They have to have chairs that are off to the side a bit but still readily accessible to Maggie if she needs help.

 If they want this to go smoothly, they need Maggie's there. Or they need her chair. Or they need someones chair. What to do? What to do?

Bring in the stunt double!

Since Maggie does not have the stamina for the required practices she went back upstairs when she was worn out. Her new beau Robert went down in his chair so they could be sure that all the kinks were worked out.

What a gentleman Robert is! But more than that, I think it's Robert's daring as a stunt double that attracts Maggie to him.





Wednesday, May 22, 2013

Chivalry is not dead, it's limping along nicely.

The healing process continues for my broken foot. It's been four weeks today and there is real progress. In fact, I just graduated from the ginormous boot to this very ugly sandal/shoe.



It was really time too. The boot was squeaking and making scraping velcro noise with every step. In fact we arrived at a wedding the other day just as the bride was about to walk down the aisle. We waited for her to enter and then slipped in the side door. Unfortunately she arrived at the altar and the music stopped and, in the sudden quiet, the church echoed with the squeaks and scrapes of my boot as we made our way to our seats. I felt like doing the homecoming queen wave and saying, "Yes we're here and sorry we're late."

Though it lacks in aesthetic value, this shoe is a whole lot easier to deal with than the boot. It's not nearly as tiring for one thing. I can move about much easier. The foot is still a bit tender and I have to get off of it, but things are definitely easier.

This morning I was taking the streetcar to the hospital. I saw it coming when I was still a half a block from the stop. I tried to run, but that just wasn't happening. I'm certain I looked ridiculous, but I was bound and determined to make that streetcar. I did, but had a more pronounced limp when I got there.

The streetcar was crowded, not packed but standing room only. To my delight and surprise a man in about his 30's stood up to offer me his seat. I politely waved him off because I wasn't going very far. Still it impressed me. I took up a position by the door and pulled my book out of my bag. I saw a younger man looking at me and to be honest, I made sure my purse was closed. Nice of me, no? I felt especially guilty when he too stood up and offered me his seat. I thanked him but said I was just going a few blocks.

To those who scoff at chivalry as anti feminist I say simply pshaw. It was a very kind offer from not one, but two different gentlemen, one of whom I had pegged as a thief. They had more class than I did. They saw a person who they thought needed assistance and they offered it.

I figured I must really look like I need help today and imagined what they saw if they were looking out the window as I hobbled to the train. That make me smile to myself.

Then it hit me: Maybe it wasn't my foot at all.

Maybe it was my AGE.

I stopped smiling.

Tuesday, May 21, 2013

School year ending, confusion beginning

The school year is drawing to a close. The last day of school is next Friday may 31. Maggie graduates either Wednesday or Thursday of next week! It would be good if I could figure out which day, but it doesn't matter, I will be there with bells on whichever day it is.

Once school is out, Maggie will be with me for two weeks until summer school starts. Graduation is merely a ceremony for her, albeit an important one. School will continue in the same place until she's 22.

After that - don't ask. I have absolutely no idea what happens then. I am not familiar with any adult programs that are set up for Maggie and her nursing needs and to be honest I've kind of kept my head comfortably buried in the sand about that. At some point I have to get out of "da Nile" and figure that out.

But not today.

For now I'm trying to figure out the next few weeks. I started worked three days a week at UCSF Benioff Children's Hospital. I am a Parent Liaison, helping parents navigate the confusing medical system at a huge medical center like UCSF. I like it and I am uniquely qualified to do the job. With Maggie out of school, though, it's going to be much more difficult.

The nurses will just have to come during the day and Maggie and I will have our outings in the late afternoon/evening after they go. That's probably a better mall time for Maggie anyway. We always go in the early morning when it's just old ladies like me there. In the afternoon evenings, there will be kids Maggie's age there.


I have one problem with the nurse who can't do anything without help.  I can't be here to help her and I may have to find someone new to work that shift. It's hard. She loves Maggie and has been part of our family since Maggie was about 6 months old, but I need someone who can do the work.  Perhaps Nurse Ratchet is free.

What to do, what to do.....


Oh fiddle dee dee. I won't worry about that today I'll worry about that tomorrow.

Tomorrow is another day.

And I have a whole week to figure this out.


Thursday, May 16, 2013

Perking along


You too can enjoy the “perks” of the disabled!! All it takes is about $1300 and a complete lack of morals and grace. The parking is great too!


I read this  yesterday about a new “trend” among some of the more wealthy and vapid members of our society. It is all the rage among  a (hopefully) small group of parents to hire a disabled individual at a price of approximately $1300/day to act as tour guide in Disney theme parks. The disabled individual get the disabled access pass from Disneyland/World allowing the family to go to the front of the line and avoid the long waits that are part of the Disney experience.  One of the rich Manhattanites who used this service said, now the 1% can enjoy the "perks" that the disabled get.

Holy Mother of God. I don't know who is worse. The people hiring these guides or the guides pimping themselves out and threatening a program that is actually of benefit to the disabled visitors to Disney theme parks. 

We utilized it once and it was great, I'm not going to lie. I never even would have attempted Disneyland without it.  There is no way Maggie could wait for several hours to go on a ride, even though there are very few rides she could actually handle. She only went on the tamest of attractions because it is difficult to hold her and she cannot protect herself. Even the Pirates of the Caribbean was a little much for her.  My sons were initially excited at the possibility of going to the front of the line to use Space Mountain until I reminded them that Maggie does not have head control. I have a rule: no head control, no roller coasters. They enjoyed space mountain after waiting their turn in line. Maggie and I just strolled around for that hour or so. I'm such a mean mom. 

Even with the access we were allowed,  Maggie melted down in very short order. It was too much for her, as I knew it would be. Still I felt Maggie should get a trip to Disneyland just like every other kid.

The point is, of course, that Maggie is not like every other kid and needed some accommodation to experience the park at all. The disabled accommodation did not make me want to return. In fact, as we walked down Main Street toward the exit I said to Steve, "There. We did it. I'm not coming back here until I have grandchildren." That was about 10 years ago. And we haven't been back since. 

Today Maggie could probably handle it better, though she still would not be able to utilize many of the rides, and we would not be able to lift her on and off the ones that would work, so a return trip is not likely. If we were to even consider returning,  it would only be if Maggie could have to have the same accommodation. If people are taking advantage of Disney in this regard, that will probably disappear. 

Though it was great, and certainly the only reason I tried Disneyland  then or would consider it now, I would not refer to this accommodation as a "perk" of being disabled or having a disabled member of the family.  Learning how to suction and parallel park at the same time while in rush hour traffic?  Now THAT is a perk, but something that attempts to level the very steep playing field is just a kindness and its good business. Families of disabled individuals know there is one place they can go and the disabled individual in their family can have a sporting chance at fun. That brings many of them back again and again and again to spend those dollars saved from not having to pay parking meters.   

Kindness and sporting chances -- what amazing concepts. I hope these greedy/spoiled people don't ruin this kindness for the people who really need it. The bragging coldhearted woman needs to be slapped and someone needs to find this disabled tour guide and put him/her/them out of business. They should all do a little time in the Toon Town slammer.  

My boys and their cousin Pete did some time in the Toon Town Jail some years back. Straightened 'em right up.  


(This picture is probably 1993ish, definitely before Maggie was born. We probably had more fun on this trip without the passes than we did when we went with Maggie.  Just sayin...) 

Wednesday, May 15, 2013

Special Olympics pictures

Special Olympics was last Friday. I promised more pictures and haven't had two minutes to post them. Finally, here they are.

This particular Special Olympics is for the kids in special education in San Francisco Unified. There are hundreds of competitors, each one having more fun than then next.

I really love the Parade in the beginning. All the kids line up by school and parade in front of the "crowd." Of course there isn't much crowd with the kids and the teachers all in the parade, but the few parents and supporters in the crowd, along with some kids attending on field trips, cheer wildly.




game face
 The Mission High kids were especially fearsome this year, starting with Maggie's Game Face.


It's less scary when she's laughing
Maggie's class


The events are generally not designed for the kids in chairs, but they adapt things to make them work. Maggie and her peers cannot push their wheelchairs on their own, so each had a teacher or paraprofessional pushing them. They take it seriously too. Check out Maggie's teacher Mr. G. and Mr. David gearing up to push Amber and Victor. (Maggie is hanging out behind them with Ms. Laura)



The races are short and hilarious.  Here's a 10 second video to give you an idea.



At one moment one of the kids looked like she was going over in her wheelchair. She only teetered and was righted immediately. The students and all the staff were laughing uproariously while I grabbed my heart. I looked up at the one other mom there and she had a hold of her heart too. We laughed when we saw each other. It was the international worried mom's sign.

I have said it before but it needs repeating. If you have the opportunity to attend a Special Olympic event, do it. It will help your heart and you will find yourself smiling over and over again. . You can see Ms. Maggie and her friend Bob definitely enjoy it.


______________________________________________________________

This post is written in memory of Mikaela Lynch, a nine year old special ed student from San Francisco who was found in a creek today after wandering away from her family home on Mother's Day. I didn't know Mikaela, but it is very likely she is in one of those crowd shots at these Special Olympics last Friday. My heartfelt condolences go out to her parents, family, friends and teachers.

Kiss your children, special or otherwise. Tomorrow is never promised.

Monday, May 13, 2013

Mothers and Mondays

Monday again. How does that keep happening?

I hope everyone had a lovely Mother's Day. I did. Steve got up to take over for the nurse letting me "sleep in."  Of course I am so programmed to get up early, I didn't sleep, but I did stay upstairs playing words with friends and luxuriating in the fact that I wasn't on duty.

While I lounged, Steve and Maggie went out into the garden and picked some flowers and made a breakfast tray. I messed them up by appearing so early, so my breakfast was biscotti and 4 fresh cherries. But the presentation was lovely.


Maggie made me a refrigerator magnet with her picture on it, which you can see on the tray in the picture. She also grew a plant from seeds in school and decorated a flower pot to put the plant in, but Steve didn't see that on the windowsill so it didn't make the tray. Both were great.

We had my mom, my brother Pat and his wife Julie came over for dinner. My sister Kate and her family came by for, and brought, hors d'oeuvres.  Steve cooked like a fiend all day and we feasted on paella. Company and dinner were both wonderful.

I did get the best card for my mom.

She seemed relieved. 



Friday, May 10, 2013

Special Olympics

This may get posted twice.  I wrote it from my phone but it didn't post and it's floating out there in the blogosphere somewhere. I'm trying again.

Today is Special Olympics and Maggie has her game face ON


Not too many athletes put on eye black for track and field events, but Maggie is not like too many athletes anyway.

More to follow!

Monday, May 6, 2013

Kiss a Nurse!

Today is the beginning of National Nurses Week. It is a time to recognize and appreciate the unsung heroes who do the lion's share of the work and get relatively small recognition in the medical communities. It is an exciting profession offering opportunities in a myriad of ways. If you are looking for something important to do with your life, consider nursing.

Nurses are everywhere -- no one knows that better than we do.There are nurses in hospitals, schools, doctor's offices, homes, businesses, and many other places.  They are not always wearing scrubs either, they may be in the boardroom, or the person behind you in line at the supermarket. If you are lucky there will be a table of nurses sitting next to you in a restaurant when a heart attack strikes or you choke on your food. They will care for you and go right back to their dinner when you are safe.

Before Maggie was born, I admired nurses in a general sense, in that way you respect and admire people who are called to do certain work. I didn't have too much cause to interact with nurses because everyone was healthy, so the respect and admiration were from a distance. When Maggie entered the world, we received a crash course in Nursing appreciation and I never forgot it.

It was a nurse who encouraged me to question a doctor about a decision when Maggie was a baby and I haven't shut up since. It was always a nurse showing us  how to do things for Maggie, how to use the feeding tube, and a catheter and care for a trach. I learned how to read monitors and when NOT to worry about the numbers. I still remember trying to learn sterile technique from Adrienne, a veteran in the PICU. We went through a lot of gloves and suction sets until I got the timing right. I deal with nurse practitioners in several of the specialties Maggie sees and always get prompt, reasoned advice. When things are not going well in the hospital, it is always a nurse who has my back and gets things back to where they need to be.

 Maggie owes her life to the nurses who have cared for her over the years. But they didn't just care for Maggie. They cared for the rest of the family too. The boys were fawned over when they came to visit and, in addition to the education we received at their hands,  Steve and I were always treated with tremendous respect and kindness.

There are a million examples I could give, but one always pops into my mind first. Maggie was a tiny baby, maybe 10 days old. She was in the NICU, where she would stay for 11 weeks, and just out of her second (or third) surgery. It was a big one. When she was born her esophagus was in two pieces. This surgery was going to connect the two pieces and it was extremely delicate because there wasn't quite enough tissue to reach. After the surgery Maggie had to be on Pavulon, a paralyzing agent so that there would be absolutely no movement. Without the ventilator would not even be able to breathe. Seeing her like that is still the most difficult memory I have.

As I stood over her isolette looking down at that frighteningly still baby, I felt completely empty and fought back tears. I was helpless. I could not do a single thing for her and this was day 1 of 10 days. I didn't know how I was going to make it.

Carol, the nurse on that day saw the struggle I was going through. She seemed to know what I was thinking. She looked at me and said, "Maggie can hear you, Talk to her. Let her know you are here."  

Those words were perhaps the best gift I have ever received, and not just because I like to talk. They gave me a purpose at the lowest possible moment. They empowered me to help Maggie. I sat there next to her little bed and told Maggie about her brothers and the house she hadn't seen yet. I told her what was going on with the other babies around her and who was coming and going out of the NICU. I told her how tough she was and that things were going to get easier. I read her stories and payed music.  I talked her little ears off and probably forged the basis of the relationship we have to this day.

So ... yeah, I do have an appreciation for nurses. The problem is I don't think I can show it all in just one week.

Sunday, May 5, 2013

Mall withdrawal

This broken foot is really slowing me down. It hasn't really been painful so I just went about my regular activities. Perhaps walking 12 blocks on Friday wasn't that good of an idea.  I'm paying the price for that now. It's a bit painful, but mostly it is just exhausting me. I have to choose one outing and pace myself.

This morning Maggie asked if we could go to the mall. She hasn't been in nearly two weeks and she may be having mall withdrawal, a serious condition that targets teenage girls. Sadly, her condition will go untreated as the mall was not the one outing chosen for today.

The outing du jour was Costco. We  have been needing to do a Costco run for a while and I wanted to do it while Steve was available to help me. Even I have limits, and pushing Maggie's chair and pulling one of those giant carts with a broken foot is just too pathetic. When we got there Steve suggested I ride around in one of these. He even offered to rig it up so I could tow Maggie and the basket.  I politely declined. 

 Maggie wasn't buying my argument that  Costco is just a mall without walls. There was quite a bit of eye rolling by someone.


As we were finishing up, a man walked around us to get something. I was suctioning Maggie and probably blocking traffic. I saw him look back at us, but didn't really pay any attention until I heard him say "Hi Maggie, what are you doing here."  That is something that just doesn't happen very often and it surprised me.   

He turned out to be Mr. D, a teacher from Mission High.  Mr. D doesn't teach special ed, but he certainly knew Maggie. He was one of her best customers when they used to do the coffee cart on Mondays.Maggie was beside herself with joy when she realized who it was, reaching out her hand and throwing herself back in her chair laughing. 

 Mr. D's simple greeting and chat completely changed Maggie's affect. He saved me from a pouting Maggie just by saying hello.

 The mall withdrawal is in remission.   






  

Thursday, May 2, 2013

Belated Prom report

Maggie looked like a princess at the prom. Her dress was like a cloud. She was excited to get dressed and excited to go. She dutifully posed for the pre prom pictures with dad and mom and by the time we were ready to get in the car she was beside herself.





When we arrived the paparazzi were there to greet us. That was hilarious. A couple of students and teachers were out in front greeting the students as they arrived and snapping pictures from all angles. Then they put the pictures on an overhead slideshow and played it throughout out the evening. It was wonderful to see the students all decked out with their giant smiles as they arrived. It was a great idea and they pulled it off perfectly.


This year Maggie did not have a date. As a matter of fact, none of her classmates attended the prom at all. In past years the teachers and staff have all attended and it has been a huge gathering of Maggie's peers, but for one reason or another, no one went this year. That was kind of a bummer, but we weren't going to let them dictate our fun.  We found a few kids who knew Maggie right away and she was happy. But they were on dates, and Maggie didn't want to be the 5th wheel (so to speak). Later her friend Liz came we we hung out with her.
Maggie's presence at the prom is not touted or ridiculed. The  students really don't care one way or the other. She is just one of the students from Mission at the prom. I love that. One girl was doing some fairly wild dancing and came over to Maggie and her friends. She may have been mocking them a bit, but I kept my mouth shut, because 1) I'm supposed to be invisible and 2) she seemed to be mocking everyone, not just the kids from special ed.
Equal opportunity mocking is part of high school life. (Mocking students with special needs because of their special needs is something else again) It was a bit distasteful, but better left alone. Besides, that moment was completely erased when this lovely student approached Maggie to tell her how beautiful she looked. As you can see, Maggie was fairly delighted at the attention.




Maggie did some dancing and the kids welcomed her on the dance floor. She really got into it for a while there.


After a while Maggie ran out of gas. We called Dad to come and retrieve us before she turned into a pumpkin. The joint was jumping when we left, but when Maggie hits the wall, her night is over.  She was a pooped princess by the end of the night, but she had a great time.



We all slept good that night and dreamed of the next ball.