Survival of the IEP Fittest

IEP was fine, as I knew it would be. But it was exhausting too. The meeting started just as school ended. Maggie went home on the bus. The nurse was waiting for her. That gave me two hours until I had to get home and help the nurse with the lifting and procedures etc.  I told the teacher that and we muscled right through and finished in exactly two hours. I came home, helped Maggie and then took a nap for an hour.

It really is quite amazing to listen to everyone describe my daughter so accurately and so thoughtfully. One of the team members said, "Maggie continues to improve in EVERYTHING." It really doesn't get better than that. There were also lengthy discussions about Maggie's ability to lie and try to mess with test results. Of course her ability to do that tells them more about her intellect and understanding than anything.  I had to point out that if I were in a meeting with my sons' high school teachers it is unlikely they would be so excited about the student's ability to lie. But Maggie's team knows a strength when they see one even if its unconventional.

So Maggie's educational program is set for another year. Today I have to meet with the Regional Center to do her program for the non educational services.This one should be quicker though.

 Have a great weekend. It's a long one for us. Maggie gets Monday off school for Lunar New Year.

In other educational news I recently discovered I am HOMEWORK!  My blog is assigned  reading for a student at a Midwest university.

I might have to start using bigger words. .

IEP Day

Today is Maggie's IEP meeting.

If there's anyone out there that doesn't know what that means, I will explain it. For typical children, there is a curriculum set by the district or state. A child with disabilities often cannot keep up with the curriculum and needs something tailored to meet his/her specific educational needs. Every child receiving special education services has an Individual Education Plan (IEP). This is basically a road map for meeting the child's specific education goals outlining the services and accommodations the child needs.  The annual IEP meeting is the time the road map is written.  It is done by the IEP Team, which consists of those who will be working with the child or who the parents believe should be working with the child, representatives of the school district, the parents and sometimes the child themselves. (Maggie will not be attending.)

For many people the IEP meeting is a battle for services. That has never been my experience. Maggie has been very well served by the San Francisco Unified School District since she started at three years old. Perhaps that is because her needs are so extreme and her response to the teachers and therapists is so good, perhaps just because they want to do the right thing. Who knows. It's working, so I don't care.

The meeting is long, 2+ hours, and each of the people who work with her gives a report. That means the classroom teacher,  the orientation and mobility teacher, the vision teacher, the speech therapist, the AAC specialist, the physical and occupational therapists and more. Maggie has probably 10 different people who work with her. They all love her and want her to succeed and I am very grateful for their dedication.

Even though I don't expect any problems,  I am not looking forward to it. It's just a long hard meeting. This is where we take stock. I sit and listen to all her progress and realize another year has gone by. They are measuring Maggie against Maggie, as it should be. And she is always moving forward and she is extremely impressive and I am very proud.

 But I will sit in there and realize she is almost 19 years old and we are excited that she can make complex sentences, and sometimes position herself to assist someone lifting her out of her wheelchair, and that her behavior when they are changing her diaper is improving.

These are all good things.

But it's a long hard meeting..

Stumbling toward Friday

I'm finally feeling back to normal after a wild week. I sort of stumbled through a week that included my birthday and Maggie's IEP. The birthday was lovely and the IEP went fine, just as I thought it would, but it is draining and I was already running on reserves.

Last Friday night the nurse cancelled and I was up 3/4 of the night with Maggie. That throws me off for days because I never really get a chance to catch up on the lost hours of sleep. I couldn't sleep at all on Saturday night, which jut exacerbated the problem.  Oh I can nap here and there, but you really need that stretch of sleep to feel restored and rested.  Our friend Chris stayed with us last weekend and offered to take a shift in the middle of the night to cover Maggie. I though that was incredibly sweet, but we rarely require our guests to do emergency nursing services. He and Steve did take Maggie out early Saturday morning so I could catch a few hours of sleep, which helped.

There were two amazing things about the IEP. The first was that the teacher Mr. "G" (visible in the third picture below) didn't just give a report on Maggie's progress. He did a power point complete with several pictures. It was great. I have a copy of it and if I knew how to share it with you I would.

The other amazing thing about the IEP was the room in which it took place. Mission High School is a beautiful building with incredible tile work and details throughout. The current building was constructed in the mid 1920's, after a fire destroyed the original building.  I had never been in this particular room before. It is in the back of the counseling office, and was apparently one used as the school library. There was an incredible mural in the room which I've since learned was  "painted by California artist Edith Hamlin, who was commissioned by the Works Progress Administration’s Federal Art Project. The murals depict work and recreational activities at Mission Dolores in the early days." *   I also read that famous artist Maynard Dixon, who later married Edith Hamlin, consulted on the murals.  

I had to snap pictures of it. They overlap because I could not capture the entire thing in one shot, but you will get the drift.

. Not bad for a back room of an inner city public high school that far too many people dismiss. It is easy to be inspired in a room with a treasure like this

Will there ever be money for things like this again? Or will we all be marveling at the manner in which they can get 100 cars parked in a lot designed for 40.

Have a great weekend. Pray my nurse shows up!



*http://www.sfcityguides.org/public_guidelines.html?article=1215&submitted=TRUE&srch_text=&submitted2=&topic=neighborhoods authored by Tam Tran

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.







 .

Schooled

One of the many things accomplished this week was Maggie's IEP (Individualized Education Plan). That's an annual meeting of all the members of Maggie's team to discuss progress and set goals and services for the next year. As I've said before, this meeting can be very contentious for many parents but I have never experienced that. I am always amazed at the professionalism of the various disciplines involved in her education and I learn something every year. This year was no exception. Maggie's team includes her teacher, a teacher of the visually impaired, physical and occupations therapists, speech therapist, and specialists in orientation and mobility, augmentative communication (aac) and assistive technology (at). Because this is Maggie's first year in high school the members of the team changed. Only the augmentative communication specialist and the teacher of the visually impaired worked with Maggie before this year. It amazed me how well folks had learned about Maggie's complicated needs.


Maggie cannot talk at all. She never could though she used to make a lot of noise. Now that she has the trach she can't even do that. All of her education is reliant on her ability to communicate so her communication always becomes the focus of the IEP. The report by the speech therapist and augemtative communication specialist becomes very important because Maggie's progress or needs in that area will affect all the other areas. The report was thorough and helpful. As I looked at the last page I noticed it said Maggie has a "mild to moderate" receptive and expressive speech and language delay.

Mild to moderate? Really. I thought to myself she cannot talk at all, how can this be classified "mild to moderate." I wasn't challenging anything but I wondered about that. I said, "what does it take to be severe". All three of the speech people (speech therapist, aac and at) at once said "OOOOOH you'd be surprised" Of course speech and language is not limited to speaking. There are many folks who can talk but do not have the language abilities that Maggie does. Maggie understands pretty much everything anybody says so her receptive language is good and she has developed tools to express her needs and wants and uses technology to get those across.

I consider myself to the THE expert on Maggie. Turns out mom needed to be schooled a little bit. I learned again, that I'm ONE of the experts, but Maggie is very lucky to have all these highly trained professionals in her corner.

Celebrate in triplicate

Maggie’s birthday is in a couple of weeks. Birthdays are often difficult for parents of disabled children because it is like a flashing billboard reminding us of how different our kids are from their non-disabled peers. That is not so much the case with me anymore, but it was for several years. I still dislike her birthday time, for other reasons. In Maggie’s world birthdays mean more than gifts and celebrations, it is time to check in with all the service providers to renew, update tweak or even discontinue services. And Happy Birthday to you too.


This started yesterday with our visit to the doctor at California Children’s Services (CCS). This one is actually semiannual. The physical and occupational therapists give their report on Maggie’s progress toward her goals, set new goals for the next six months and recommend the frequency of service. The PT recommended cutting her therapy in half. I think that is a crock, but I did not fight it. The budget is in tatters in California and I am not sure what benefit she would get from someone who does not want to work with her.

I can accept the fiscal realities. Everybody is feeling the pinch, and Maggie is no different. What I will NOT stand for, however, is having reports contain inappropriate or incorrect information to justify cutting services. Maggie’s web of services is so complicated that a wrong piece of information at point A can be plugged in at point B and screw up more pressing services. The PT gave me his draft report and I had him change it to be accurate. If he can justify cutting services with correct information, I would not fight him. I do not agree with it, but I have to choose my battles.

Monday is Maggie’s IEP, (Individual Education Program) meeting. This is the school district’s mandated annual meeting to address Maggie’s educational needs and what services the school district will offer to meet those. For some parents this is a very contentious meeting. That has never been my experience and I do not expect it will be this time either. There may be some cuts here and there because the San Francisco Schools are B R O K E, but I am more interested in the program as a whole. There are no transitions this year, so I expect it will be fine.

After the school district, I have to meet with Golden Gate Regional Center (GGRC) for Maggie’s annual review there. I cannot remember the name of that document IPP – Individual program plan, I think. This addresses Maggie’s needs that are not school or therapy related. This agency has been reimbursing me for the nursing for the past couple of years. I do not anticipate any changes there either, but I do not think I will rest easy until I know that is the case. The budget crises looms large, but California is going to have to pay for Maggie one way or the other. It is cheaper and better for the state (and for Maggie) to stay at home than to live in an institution, so I doubt her care will be affected.

Because Maggie’s disabilities are so extreme, I do not have the same angst over these meetings that other parents have. Maggie’s needs are obvious and the services are in place. I do have to be vigilant that the reports are correct, though because undoing a mistake is very difficult. Agency B will rely upon incorrect or understated information about her medical needs from Agency A and the services adjusted accordingly. If it results in being offered a service we do not need, that’s easy; but more often it puts me in a position to fight to keep something she DOES need.

As you can imagine, all of this really kills the mood to celebrate her birthday. The real celebration comes when all this is complete.

This year, just for good measure, I am having my shoulder surgery the day before her birthday. I should be a barrel of laughs for Maggie.

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.