Party Day

I'm off to a party today. It is a party to honor Tyre, Maggie's friend and prom date. Tyre passed away a year ago this week, about 8 months after Maggie did. So the two of them are together. Today they can look down on all of us and giggle, which is what they always did when they were together.

Here they are as prom dates - though this as taken in Tyre's hospital room. He couldn't get out in time for the prom, so we did pictures in his room. It's one of my favorite pictures and is displayed in my dining room. I absolutely love the way he is looking at her.

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I'm not going to pretend that this will be easy, because I know it won't. It will make me sad, but it will also be fun, Not sure that makes sense to everyone. I have learned, though, that things can be fun even when they make you sad. I know I will see lots of the therapists that worked with both kids as well as teachers they shared and perhaps families we all knew.  These people were an important part of my life for a long long time, and in a way I lost them too

So I am re-entering Maggie's World for a few hours today.  I miss being part of it.

SILHOUETTE

Maggie used to bring home the best gifts for me. They made them in school and she would be so so proud to give it to me.

This is one of my favorites. It's so retro.  I remember these in lots of houses when I was a kid.

I haven't even hung it up yet because I can decide where it should go. Once I get my office the way I want it, it will go in there. Seems fitting since my office is Maggie's room. There's good energy in there. 

I can't remember if this was Ms. Rosa or Mr. G's class - but it's great. 

Maggie's Garden at Mission High

Maggie roses in the box. Note tag.

We planted the Maggie roses at Mission High last Friday. The plot we were given is in an internal courtyard that could be an absolutely fantastic place. It's a bit overgrown and not very well managed, but that will change. In the space of a little over an hour our group transformed two rows and planted the roses and had lunch. it was a great day, best told in pictures.

Mr. C", an aide in Maggie's class (and someone she adored) made all the arrangements and explained what we were to do. We were to clear these two beds but leave a few flowers for color.

Before

Mr. C showing us what to do.

So everyone just got to work

 

It didn't take long to clear with all that help. Then we could prepare to plant

Joe Bender (Teacher Joe) and Nurse Janice

Steve digging the hole

Ms. Laura planting the rose

Time to water

Tyre approving the plaque

Steve setting the plaque

plaque in place

Posing for pictures, Grandma Carmel, Steve Eddie and Me (Tim had to work)

father son American Gothic

Food for everyone!

after. bed is clear, roses planted, and watered and straw in place

Now Maggie's garden can take off and add more lovely color to the courtyard. Hopefully more groups will adopt a little part of that courtyard and the transformation will be wonderful. Mission High is in the banana belt of San Francisco - the best weather in the city. The courtyard is protected from the wind, so it is really ideal.

Eva, Duane, Cesar, Rosa and Janice standing in front of  Maggie's bulletin board

I have to thank everyone at Mission High, and especially the staff of room 223, Miss Rosa, Mr. C., Eva, Duane and Nurse Janice for making this happen. (And Nurse Yasmine who is not in the picture) These people gave Maggie a great year in school and a wonderful sendoff. Her teachers and staff from earlier years, Ms. Taylor, Ms. Derkash and Mr. G (Garrido) and all the paras who helped her get so far and do so well.  Thanks also to Mr. Guthertz,  Joe Bender, Mark Erickson, Ms. Laura, Theresa and everyone else who made this garden day possible.

Most of all, thanks to the students, special ed and others who made Maggie want to come to school everyday. You were her peeps.

I will miss Mission High but will always appreciate Maggie's time there.

Feasting in Feasterville

We are still basking in the enjoyment of our whirlwind trip back East. I wrote about our two days in New York, but the focus of our trip was a wedding in Feasterville PA.

 Manhattan and Feasterville could not be more different, so it was like two separate trips. Both great, I might add.

I doubt I could or would have made this trip at all if not for the wedding. We received the save the date card months ago. Since it was  a wedding the date was not going to change and that gave me the focus and the time to consider going, make the arrangements and actually get on the plane. And I'm so glad we did!

When you attend a wedding 3000 miles from home and you don't really know anyone and still have a blast, that's a great wedding. Janine, the bride, is the daughter of Steve's client and friend Joyce. I've actually only met both Janine and Joyce once before though we've communicated on the phone and by email often and I had never met Paul, the father of the bride or Mike, the groom. Didn't matter. We were treated like family from the outset and included in lots of festivities. 


When we arrived at our hotel there was a gift basket waiting for us. It was full of cookies and treats, kleenex and sundries etc. I thought that was so sweet and figured everyone staying at the hotel received one until I saw THIS shirt for Maggie in the back of the basket and realized this was done specifically for us. Maggie loves it!

The wedding itself was beautiful. Janine and Mike have been together a long time and the love and support in both the church and the reception was palpable. They are good people who love  their families, friends, community and  each other and the joy was infectious.

Janine is a special ed teacher (I told you she was cool) and had these key chains at each place. They were made by a group of students in an  Autism class taught by her friend.  In lieu of any wedding favor, the bride and groom made donations to Autism Cares and Special Olympics.

Are you starting to see why I love these people?

I hope Janine and Mike have a wonderful life together. If even a a fraction of the love and support we witnessed at the wedding continues to surround them, they will be set. And it will because of the people they are.

IEP Day

Today is Maggie's IEP  or Individual Education Plan meeting. It's an annual review of where a special education student stands and what the goals and objectives are for the next year. The meeting culminates in the written IEP, basically a contract on how a student's education plan will go for the next year. If done correctly, it is a helpful document for student, parents and educators alike.

 For some parents these meetings are a battle to get the items they want in the written plan. There is strategic maneuvering and planning beforehand and precision execution on the day of the meeting. This is necessitated when parents want more than the school district is willing to provide - sometimes because school districts are not doing what they are supposed to do and sometimes because parents are overreaching. Either way, it can be upsetting and difficult for all parties.

Maggie's IEP' have never been like that. Perhaps because her needs are so extreme, everyone is on the same page regarding Maggie's needs and abilities. It is a long meeting, usually about two hours, where all the different people who work with Maggie give their reports of her strengths and weaknesses. I am grateful and happy that all these professionals spend time with her and work together to help her achieve all she does. There are no surprises at the meeting because I keep myself in the loop all year long. I don't have any new issues to bring up and do not expect any major changes to her program. I expect this will be the all the other IEP meetings she has had, congenial and helpful.

Despite the love fest that Maggie's IEPs tend to be, they are difficult on me. Another year has gone by and though she improves educationally every year, she is in a different world and it is never more apparent than at these meetings.  We are measuring her but we are not using any measurement that is applicable in the normal world.

She is who she is and that's fine with me, but this is one of the few times I actually sit and think about other kids her age.  I sit there for two hours and listen to how wonderful my daughter is and I'm proud and happy; but while we focus on her accomplishments, I can't help but think about what she cannot accomplish. Most 18 year old students are not praised for their ability to make appropriate 4 word sentences on their communication device.

 Is it impressive? Hell yeah!

Does it hurt just a little? Definitely.







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The Divine Miss Em

Tuesday was a big day around here. Not only was it Maggie's first day back to school  for 2012, but some special visitors arrived. Maggie's former teacher Emily, who left San Francisco to teach in an international school in Warsaw Poland, came to stay with us for a few days with her handsome Polish boyfriend Dominik. Dominik has never been to San Francisco, so he got to see the sights and we got to visit with Emily.

Other than the occasional skype call, we have not seen Emily in nearly four years. I wondered if Maggie would really remember. She did, without question. As soon as she heard Emily's voice, Maggie started pumping her arm in excitement.

Emily taught Maggie for two years, in 4th and 5th grade.That was her first job out of college. She was hired a week before summer school started, packed her bags in San Diego and headed to San Francisco not knowing a soul or having anyplace to live. She acclimated to San Francisco perfectly and stayed at least five years. Emily connected with the families of several of her students, but of course I assume we were the closest. (Probably everyone else thinks that too.) She was over here many times over the years and was like a part of the family.

Perhaps because of her youth and freshness as a teacher, or more likely because of the person she is, Emily was the MOST enthusiastic teacher you can imagine. Together with Sheila, who taught Maggie and her classmates from K-2, she had to most disabled children in her class and made sure every one of them was engaged in whatever was going on. The two of them made sure the kids were included in the larger school activities. Not "included" in a special ed way, but truly a part of every activity. For example, there was a school talent show and Emily played straight man and facilitator to Maggie's "sit down" comedy role. (Maggie repeated that gig in middle school with "Teacher Joe" playing the straight man.)

Maggie was of course the perfect student for Emily because she is also very enthusiastic. In those days, before she had the trach, Maggie used to shout with excitement all the time. There was a lot of shouting during her time with Emily. Maggie was a Diva from the beginning, and Emily encouraged that at a time in Maggie's life that really made it stick. Maggie went off to middle school confident and sassy and never wavered from that personality.

Given Emily's sense of adventure, it was no real surprise when she decided to take her show on the road. She moved to Warsaw not knowing a soul and without a place to live, just as she did when she moved here. Of course she loves it there, but Emily loves wherever she is.  Even hanging out in the basement waiting for the school bus yesterday or checking out Maggie modeling her Euro Cup shirt that Emily brought her from Poland. (below)

Now we have to say goodbye again because Emily and Dominik return to Warsaw today. It won't be sad, though because we know she will be back

               

Adios, Adieu, Auf wiedersehen

What do Poland, Vietnam, Tennessee and China have in common?

Give up?

These are the destinations of Maggie’s former teachers and nurse. In the last four years one of Maggie’s teachers, or in one case her nurse, have moved out of San Francisco immediately after spending a year with Maggie.  First, it was the elementary school teacher Ms. Nail landing a job in an international school in Poland. Then her nurse Sally moved to Vietnam to teach English. Last year her high school teacher Ms. 

Taylor moved to Tennessee to be closer to family and now Ms. Derkash is leaving for China.  

Could there possibly be a correlation between teaching or caring for Maggie and wanting to get as far away as possible?

 Naaaaa.

Today is the last day of school and that means we have to say good-bye to Tanya Derkash. It will be hard because it has been such a great year.  I knew after a conversation we had in January or February that she was going to leave San Francisco. She did not come out and say it, but it was clear to me.  As I have mentioned before, this is a hard place for young people to make a life because it is so expensive. Of course, I thought I was so clever figuring out that she would return to Colorado where she was raised.

Uhhh, no. Try China.

China. Wow! I admire her adventurous spirit. It is a red-letter day for me if I leave the City and County of San Francisco and the thought of starting a new life in China just makes me tired. However, Tanya can do it. She will be in an international school with other adventurous teachers, which will make things easier for her. In addition, her big smile, big heart and willingness to jump in and try things give her the perfect temperament for this.  

Still, we will miss her here. Maggie adores her and the energy in the classroom was always positive and upbeat.  Tanya stepped in after Ms. Taylor left and the transition was seamless. Tanya has been at Mission high for several years and already knew the kids before she took over the class.  (Hmm. Let’s review. Same job for several years. Teaches Maggie for one year. Leaves for China. Hmmm.)    

Maggie will get another new teacher in the fall and I am sure he or she will be great. Maggie has been blessed with great teachers throughout her school years.  Of course, at the end of the year, we will be prepared to bid the new teacher adieu as he or she heads off to spend a year in Antarctica.  Maggie just seems to have that effect on people.

Good-bye Ms. Derkash and Good luck. It was a great year and we want to hear from you and your students in China.

Tennessee Taylor

There is an opening on Maggie’s social calendar. It seems a party planned for next week has been cancelled. The honoree left town in a hurry.  We are both happy and sad about that.

The party was for Ms. Taylor, Maggie’s former teacher. Even though she stopped being Maggie’s teacher, she was a frequent visitor to the class and volunteered to do a science project with the kids every week. Ms. Taylor left at the end of the last school year. She decided not to sign a contract to teach this year because she and her husband were going to leave San Francisco.  This City is a great place to live and it draws young people from all over the place, but when it is time to settle down and think about buying a place or having a family, many decide to go back home or somewhere where they have family.  In addition, it is just too expensive here for most.  It is unfortunate because we lose some great folks.  Ms. Taylor and her husband are two of them.

 They planned to head to Nashville where her sister lives.  Good news. Then this nasty job market interfered with their plans, neither of them could find work in Nashville. Bad news. They stayed here even though she had given up her job. Good news (for us.) Then she discovered she was pregnant. Great news!    If they got too close to June, when the baby was due, they would wait to continue the job search in Nashville.  Suddenly things started happening on the job front and her husband found the job he wanted in Nashville. Wow! Great news again.

The plan was to leave in a few weeks and get everything together. That allowed time for the kids to give her a baby shower next week. Everybody was very excited, except her doctor.  Doctor’s orders: She has to go Nashville now, get herself settled, and leave the moving to her husband.   The baby shower is off, but that's a small price to pay for a healthy baby. 

So Ms. Taylor is gone. She left yesterday and she will not be back. We will miss her. We are sorry we will not get to see her beautiful little girl who will have the beautiful name Elisabetta. However, there is facebook and blogs and we will meet her online, which is so 2011.

San Francisco, Mission High, Maggie, and her classmates say thank you and goodbye to Nikki Taylor Guerrini and her husband Richard. We wish you nothing but happiness in Nashville with your little girl.    

For teachers

Yay for teachers. I just love this guy and his rant. Sorry it's directed at a lawyer

Changes in Latitudes

Today is Maggie’s last day of Summer School. Her first full year of high school is behind her. That is hard to believe. Even though it was a transition year, it’s been another great year for Maggie school wise. Many special ed parents are frustrated by the programs and services their kids get from school districts. Not me. The program she is in fits Maggie like a glove. She is thriving and excelling because of that.


Of course it’s more than the “program” it’s the people who make it work. Maggie has always had excellent teachers who are committed to Maggie and her peers. This is not an easy population to teach. Often the physical disabilities make it more difficult to figure out the intellectual level of the child. If Student X is not hitting a switch to make the talker work it could be that s/he doesn’t understand why s/he should hit the switch or it could mean that s/he cannot move the right arm to reach it. There is a lot of trial and error, starting and stopping. Yet the engine chugs and everyone moves forward.

A friend who has a child in the same program a couple of years behind Maggie was lamenting an unexpected change in teachers and I told her I believe the success is a combination of the teacher, the program and the student. I said that to make her feel better and maybe to reassure myself as well. Maggie, too, is facing a change in personnel.

Maggie’s teacher, Ms. Taylor is moving away. San Francisco is a place where many young people come to stay for a while, but when it is really time to settle, they leave because it’s so expensive here. A teacher’s salary will go a lot farther in other parts of the country. We already know who the new teacher will be. She is already at Mission, everybody likes her and she already knows all the kids, so I am hopeful things will continue to chug forward. I have no doubt that it will, and even though Maggie will have another transition, it will be relatively smooth.

Maggie will miss Ms. Taylor. They really hit it off. Ms. Taylor’s energy and talent are great. the kids were happy and engaged in the class and with one another.  She also managed the classroom like an old pro and there is a lot of management involved. There are classroom aides, nurses, in the class and therapists, teachers and others in and out of that classroom all day long. Ms. Taylor had to juggle all the needs of all the kids and all the personalities of all the adults. She did it all with a smile.

Thank you for everything Ms. Taylor. We wish you well as you leave California. I hope the kids and the parents in Nashville realize how lucky they are to have you.