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.







 .

It Takes a Village

According to facebook, it is Special Education week. Or it was last week. Or it was two months ago and I’ve only just received word. Whenever it is or was, it exists because facebook deems it so. With the bazillion users on facebook, consciousness can be raised, and that is a good thing. Even though I did not put the bizarre message in my facebook status about special ed kids not being contagious (what!?!) and only seeking acceptance, I applaud the attempt acknowledge this population. 

It is not just the special education students who should be acknowledged, but also the whole special ed world. It is teachers, paraprofessionals, nurses, administrators, therapists and the bus drivers.  It really “takes a village,” and when it works, special ed is that village.  

I know many parents have terrible experiences in the special education world because there are not enough resources to give every child they program they should have. Many parents end up fighting school districts to get the services their child needs. Unbelievable amounts of time, effort and money are wasted in these fights.  If those resources could be directed into the education programs instead of to the fighting, a lot of the issues would be resolved.  There are unreasonable parties on both sides. Some districts simply refuse to make even the slightest attempt to comply with the letter or spirit of the law. Some parents are wrapped up in the fight and forget what their fighting for.  This is not the majority of districts or parents, but many perceptions are based on this minority.  This is not to say things don’t need improving – they do. There are huge issues with unfunded federal mandates regarding education. It school districts are required to do things, they have to get the funding to do it. Funding or not, though. districts need to embrace the concepts and ideals of special education if it is going to work. It can work and it can work well. Maggie is a perfect example of that.

Obviously, we are big supporters of Special Education in this house.  Maggie would not have the success she does without it. I could have instructed my boys in arithmetic, English, spelling etc. They would not be as thoroughly trained as they were by going to school, of course, but we could have muddled through. I could not have done that with Maggie, though, no way. I would not have had any idea where to start.

Maggie’s education started when she was about six months old. Her first teacher was Jeri Hart, from the Blind Babies foundation. She saw Maggie potential immediately and showed me what to look for.  Vision is a huge part of early learning for babies and when vision is impaired, as it is with Maggie, some of the developmental markers will appear to be missing when in fact those markers are dependent on vision. I learned to advocate that point for Maggie immediately.  That prevented Maggie from being mis labeled early on, and kept the door open for learning.

 Maggie started an infant program including physical, occupational and speech therapy. All of those disciplines worked together to lay the foundation for the building blocks of education yet to come. I did everything they said to do, but I had no idea what was going on or why any of it mattered. Frankly, I went to all these appointments to ease the isolation of this new life I found myself living.  I  did not know that learning to reach for switch toys was a crucial first step in her communication.

Maggie started pre-school when she was three. I was supposed to put my medically fragile three-year-old child on a school bus. Right. That just was not going to happen. As fate would have it, just before school started, I participated in a parent panel presenting to the bus drivers at the bus company. The other parents had complaints about busses being late etc. Maggie had not started yet and I told them I was scared to death. I learned then that the bus drivers take a great interest in the special ed kids they drive and worry about their well-being. I met the guy who would be picking up Maggie and many of my fears melted away (Ok, I did ride the bus with her for a while until they put a nurse on the bus.)

From the infant program to high school, Maggie has had great teachers, great classes, and great staff and has achieved tremendous success because of the entire village.

 Tomorrow I will show you some of the “Village People”

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.

Transitions

Maggie's IEP is tomorrow. For those of you lucky enough not to know anything about the world of special Ed, the IEP is the Individual Education Program that every special ed student has to have every single year. The IEP meeting includes the parent, teachers, therapists and any other specialists sitting down together to hammer out a program for the next year. It is supposed to be individual, but in reality it's making an existing program within a district work for a specific child's disabilities.

For many parents and school district representatives, this is a showdown. At the extreme level, Parents come in ready to demand exactly what their kid needs and never mind the cost or the needs of any other kids; and districts come in with "this is the program, and we will not accommodate one single thing to meet the needs of your child." Low vision, sorry, no seats in the front. The extremes rarely happen. I've seen it, mind you, but it's rare. Generally a consensus is reached somewhere in the middle.

Maggie's IEP meetings have always been cordial and without drama. That works perfectly for me. It may be easier for me because Maggie's needs are so obvious to everyone. Sometimes the kids who are high functioning, but still need help are more likely to fall through the cracks. Maggie is pretty involved and her needs are profound. Another factor is Maggie's personality. She is also very responsive and very smart and the teachers and therapists love to work with her. That's just luck. Other kids with her extensive needs may be unable to demonstrate their knowledge as well as she can and therefore getting that extra push from teachers etc might be a bit more difficult. Teachers, like everyone else, want to know that their work is making a difference and they can see that with Maggie.

The meeting itself is trying. It takes about three hours (partly because of all the people involved in Maggie's program). If this were in the private sector it would take about 45 minutes. That drives me crazy, but it's just a little something. Because Maggie will go to high school next year I realized I should at least look at the classroom they want her in. I was delighted to learn that she has a spot at Mission High, where her specialized program continues. Of course I was going solely on rumor and reputation and realized I should have a look see for myself. I just returned form there. It is perfect. There will be six kids in the class next year, including Maggie, and she already knows three of them. Woot! The transition will be as smooth as possible.

Of course I saw the vending machine behind bars and noticed the huge hallways and the very large students and felt a lump in my throat. But it is time and it is the right place. I showed up without an appointment and asked at the office if I could check it out. The teacher agreed, which was very kind of her. That made a great impression on me too.

My brother is a student teacher at Mission. Hopefully, budgets willing, he will be a teacher there next year. Maggie won't care, mind you. She'll be too busy catching up with her old pals and making new friends. But what a gift that would be for a worried mom knowing that Maggie's cool uncle would be in the building.

Step Away from the Edge, Ma'am

I talked to Maggie’s teacher yesterday about this and that. In the course of the conversation, he told me that Maggie was being measured for her cap and gown for graduation. She’s the only 8th grader in her class, so she’s the only one from that room graduating. I will receive information about options for ordering. Will it be cap and gown or just gown? If cap, do we want it with or without tassle, etc.

I told him that the cap would be a complete waste of money for her because it will never work with the headrest on her wheelchair and, in any event, Maggie will be tossing that cap long before they ever walk (or roll) down the aisle. But I still want it to get pictures. Joe reminded me that he and his staff do have a bit of experience with kids in wheelchairs who don’t like to wear hats. Right, I said, and then there’s Maggie. We both laughed. [She flings things far across the room.]

This conversation took place while I was parking to go to an appointment. I hung up the phone and walked down the street toward my destination. I felt a smile growing across my face and had to stop and let the whole feeling wash over me. Maggie is graduating and heading to high school. Wow!

Milestones are exciting for every parent, in fact, probably more exciting than they are for the kids. But milestones for Maggie pack an especially sweet punch. She has been through so much. A lot of her life has been on the edge of the precipice. But we have pulled back from that edge lately. She is stable and healthy.

And I don’t think I appreciated that fully until that moment on the street all by myself.
The maintenance of her health is non stop and all encompassing. Her care requires 24 hour vigilance. But we are doing it, she is thriving. And that is precisely why we do it.

Mark your calendars. There will be a graduation party.

Kids Like These

Recently “Jay”, the daughter of a friend, contacted me seeking help with an assignment she has at her university. Jay is studying to be a special ed teacher (YAY!). Her assignment is to take the facts of a case study of a child and prepare a social outing that will work in light of that child’s disabilities. That is a wonderful assignment. And just by contacting a real family, Jay is already ahead of the game.
Of course, she thought of us because the child in her study has CP (cerebral palsy) and uses a dynavox (the same communication device that Maggie uses). She gave me information about this child that she thought was revealing, but really does not tell you anything. I am willing to bet the professor did that on purpose. A diagnosis of CP in and of itself means NOTHING. It is such a wide label; it encompasses everything from a child that is slightly clumsy to one that is far more involved than Maggie is. Maggie is pretty severe on the scale, but there are plenty of kids whose motor impairment is more severe. Often people know someone with Cerebral palsy and assume everyone with that diagnosis looks that same. That is erroneous. It is as naïve as thinking that everyone with cancer looks the same.
I cautioned Jay to go by the person, and not by the diagnosis. She had to look for clues, not just labels, in the case study. The girl’s IQ was low and suggested the girl had limited cognitive skills. The raised a flag immediately. Who tested her and how did they score it? The girl could drive a power chair with her head and use a dynavox; based on those facts alone, she has a lot more going on cognitively than that IQ test would indicate. Jay’s interest was piqued. I suggested that her teacher might be laying traps that she was going to avoid just by calling us and getting a “reality check.”
I have no idea if the professor was as enlightened as I hope s/he is. However, I just have to believe that. As a parent of a child who has been defined by her diagnoses her whole life, I have to hope the next generation is smarter and more in tune with reality.
Another of my ten-thousand pet peeves is to hear Maggie or her peers described with the phrase: “KIDS LIKE THESE.” When a sentence starts with that phrase, the hair on the back of my neck stands up. I hear it all the time from smart people who should know better. People like doctors, and nurses, and teachers and more. Maggie is simply lumped in with other special ed kids or other kids who use wheelchairs, or other kids with trachs, or other kids who use communication devices, or whatever. Very very few fit all of those categories. Maggie, like every other child, is a unique individual. Dare I say, maybe a bit more unique, if that makes sense.
When these smart people use that “kids like these” phrase around me they get an exaggerated confused look from me along with a response like “girls?” or “kids like what?” Generally, that wakes them up and they focus on Maggie instead of her diagnosis. Sometimes they squirm a little bit. Sometimes I get funny looks, like maybe I do not realize that my daughter is disabled and they are going to burst my bubble. Then I just pity the fool.
However, with Jay and “students like these” getting “assignments like these” I know the tide will turn and the children who come after Maggie will be considered children first and disabled second.

Re-defining Special

Maggie is in special education. That term, "special ed", evokes different responses from people. There are still those who giggle, or tease; there are those who resent everything about it, finding it unnecessary and expensive; and there are those who cannot imagine life without it. As you may have guessed, I fall into the latter group.

Special ed is a relatively new concept. Before 1975, when congress passed the Education for Handicapped Children Act, kids with special needs either stayed home from school or were institutionalized. I graduated from high school in 1974. I would have been excluded from school if I had special needs.

Special ed is an ever-evolving concept. It changes and refines every year. It includes the most physically disabled, like Maggie, and the child who appears perfectly fine but cannot learn in the way most children do. It takes place in almost every school in special day classes and regular classes. It is not perfect but any means, but neither is typical education. It will take a few more generations to get rid of the bias and the concept of funds being “deviated” from regular ed. It will arrive in full when it is no longer considered “special education”, but just education. But that is a long way off.

The evolution of special ed and the services many children need was and is accomplished mainly through the outrage of parents and educators. Maggie’s state of the art program in San Francisco Unified exists because of parents, and mostly mothers, who could not get what their children needed 10 or 15 years earlier and made noise about it. My hat is off to them. And I hope I am doing my part for those kids who will follow Maggie.

One of those women is my cousin Mickey. Her oldest son Bobby was born in 1976 and had special needs. Mickey, as a mother and a teacher herself, kept fighting to get him what he needed. Because she is such a lovely person, she fought with the system rather than against it and made friends instead of enemies along the way. She relocated to an area that was more beneficial to Bobby’s education. And Bobby flourished. When I say flourished, I mean as a person, not as a person with special needs. Because of his mom and her ability to get his needs met, Bobby finished school, got a job and lived independently. He met a girl, fell in love and asked her to marry him.

He grabbed the brass ring.

What more do any of us want for our kids?

Bobby died last Friday at 32 years of age. I don’t know as I write this what took him, but I know he died in his own apartment watching ESPN, something he loved to do. The world is quieter and a lot less jovial now. Bobby was larger than life, in every respect. His personality was huge and filled every room he entered. He was the life of every party and every gathering. I will miss him and so will everyone who ever met him.

Thanks Bobby, and thanks to your mom Mickey, for making “special” so special.

Teacher Joe

It takes a special kind of person to be a special ed teacher, especially in a huge district like San Francisco. They work a little magic with very little in the way of resources. San Francisco may be a little better than many places because of the diversity of the population, the willingness to try new things and the proximity to so many good colleges to attract the best and brightest teachers. On the other hand, it may be a lot worse because of the size of the district, and the breadth of issues that arise because we have such a diverse population. Multiple languages and cultures, learning styles, parental support, etc. Also, money problems abound here and everywhere (Especially in California) and teachers are asked to do more and more on their own dime. Maggie has been fortunate enough to have teachers willing to take that step for their students.
Teacher Joe is her current teacher and he is a cool guy. He is kind and gentle and he keeps expectations high for his students. Since his students are generally the most severely disabled, that is a bit unusual. But guess what? High expectations translate into high achievement. Teacher Joe, like Teachers Emily and Sheila before him, have pushed Maggie to do things I never thought possible.
Joe is the kind of guy that doesn’t change his plans to spend the long Labor Day weekend visiting his mother in law on the Gulf Coast even though Hurricane Gustav is bearing down. He goes anyway so they can keep her company during the long and scary storm. His flight home was cancelled and he missed school for a couple of days but returned safe and sound yesterday.
He is the kind of guy that plays the straight man to Maggie so she can tell jokes at the school talent show using her talker. Her former teacher Emily did the same thing. You don’t know how huge that is. Participating in the talent show – or any other school function – makes Maggie a true member of that school community. Maggie attends a typical big city middle school, but her classroom and school day are anything but typical. It would be easy to stay isolated and protected from the throng of typical students, but it wouldn’t be any fun, so Teacher Joe keeps them active in many school activities. The classroom is a busy place with therapists, nurses, and all types of teachers in and out all the time. It can be exhausting for everyone (especially Maggie, pictured with Joe). But Joe greets everyone with a smile and insists that adults conduct their business quietly so as not to disturb the learning that goes on.

Today is Teacher Joe’s birthday. Happy Birthday, Joe. We want to wish you a great day and another great year. Thanks for all you do for Maggie and all the kids.