There's an issue that has been lurking in the future, like so many of Schuyler's do.
Julie and I worry about the future a great deal with Schuyler, and we always have. Part of that fear experience is just one of the joys of parenthood, I suspect. As watchers and protectors of our children, we're always waiting, always watching for the next Big Bad Thing that will step out of the bushes and harm our living, walking hearts. That's what children are, I've been told, they are our hearts set free into Life, walking around and challenging this grand rough world to do its very worst. And as parents, we watch helplessly, knowing that if the worst happens, it's our hearts that will die, too. It's the part of parenting that no one explains beforehand very well, because it's hard to talk about, and besides, you wouldn't understand anyway. You get it only when your own chaotic heart takes reckless flight in dirty tennis shoes.
So the future. Schuyler's future isn't the bleak thing we were led to believe it would be, by doctors spinning worst case scenarios and teachers afraid to admit that they didn't know what they were talking about and afraid to offer hope instead of fear. Schuyler's present is good. It's not perfect, but it's better than we thought it would ever be, and certainly better than a lot of broken children, maybe even most of them. Schuyler's future is crammed with promise, but it's a murky thing that neither I not Julie nor anyone else can really see.
So, bereft of concrete obstacles, we identify future monsters instead.
One of the scariest of those future monsters is middle school.
Well, I think we all remember middle school. I actually attended junior high school, grades 7 through 9, before ending up in high school for the last three years, so my memories are a little different, but still. I also taught trombone students for a long time, mostly middle school, and the thing I remember the most is how weird they all were. It's a wild age, when kids actually start to become the people they'll be for the rest of their lives, but they haven't yet been beaten into the grooves and the niches and the cliques that high school enforces. They are weird kids, and they're just starting to figure that out, so it's a really interesting but dangerous time for them.
We've been fearing middle school, in part for that reason, because even among the weird kids, Schuyler brings a lot of extra weird to the table. It's not a good age to suddenly be different. Just the thought of it makes me a little sick to my stomach.
The greater uncertainty for us, however, has been of how exactly Schuyler's AAC class presence was going to extend into middle school and high school. That's been the plan for a while now, according to her school. As her pilot class progressed through the system, the AAC program would grow with them, always giving them a home base of support, all the way through graduation. Our biggest concern has always been how this plan was going to be implemented exactly.
Today, we got an answer. It won't be.
When Schuyler finishes fifth grade (next year, unless she suffers some catastrophic academic failure), she will leave her school and her AAC class and will start middle school at her home campus. She will do so without an AAC class to go to, without (as far as I know) any permanent place outside of her mainstream classes where she'll be supported by anyone trained in assistive technology. An assistive technology professional, one of Schuyler's former teachers most likely, will travel from campus to campus in this huge school district, and that will be it. As is the case with so many mainstreaming situations around the country, in slightly less than a year and a half, Schuyler will learn to swim, or she will sink.
And suddenly, the future has a monster whom we can see much more clearly. And it's bigger than we thought it would be.
I'm going to be honest here. We're disappointed, bitterly disappointed, but we're not entirely blindsided by this decision. When the original plan was presented, I wondered at the time whether it was one that was going to be realistic. From the school district's perspective, they are continuing to support a program that gets to these kids at the most crucial age, and they're right. Furthermore, if I'm going to continue to beat the drum on behalf of inclusion, then this is where I get to put my money where my mouth is, I guess. And I know, all too well, that receiving even this much AAC support and instruction is wildly beyond what the vast majority of these kids receive in other schools and other communities. The Plano schools have gone above and beyond for Schuyler and her friends, and I will never diminish that or lose sight of exactly how much of a difference it has made in her life. We are extremely grateful for everything they've done and continue to do for Schuyler, and we're hopeful that the Plano school district's commitment to our daughter and her friends will continue to be strong.
But the future just got murky again, and that makes me feel sick inside. For the past ten years, and particularly since the diagnosis, Julie and I have worked hard to provide Schuyler with consistency and support. We've both sacrificed more than perhaps anyone realizes in order to make that happen. And yet, I have failed Schuyler, time and time again. Sometimes in small ways, and other times in monumental, broad strokes of stupidity and selfishness. I have considered acts of extreme selfishness and pain and betrayal that have left me now feeling evil and haunted and guilt-ridden. I've been both a good and a horrible father, but I try to do my best, and when I open my eyes and truly see what's at stake, I like to think that I find the path again, even if I've wandered far into the woods.
Julie and I have given a lot, maybe given our all, in order to give Schuyler a shot, and when we moved to Plano, we thought (perhaps foolishly, as all parents of the broken do from time to time) that we'd found the answer, and that it would sustain her through her school years. Now, I just don't know. Julie asked me tonight if this meant that we might have to move again. I said I didn't know. Honestly, I don't know where we'd go if middle school turns out to be a disaster for Schuyler. Plano schools are among the best in the country, particularly for special education. If they can't take care of her here, then who can?
When I spoke to Schuyler's principal today (a very nice woman who has been among Schuyler's greatest supporters, and who did not seem to enjoy this conversation one bit), she said that Schuyler would have a couple of options. She could finish out fifth grade at her current school in her current program and then start sixth grade with a whole new bunch of kids who haven't spent the past few years getting to know her and who wouldn't immediately understand her very unique set of circumstances. Or she could transition early to her home elementary next year so that she'd get to know some of the kids who would then join her in middle school the next year. That last option sounds sort of awful to me; not only would she lose a year of AAC instruction, but she'd then have to experience changing schools twice in two years.
I asked if it would be possible for Schuyler to transfer to the middle school that her current elementary feeds into so that at least she'd have the same group of friends. It's a possibility, but we'll have to apply for permission to do that, and the middle school may already be closed to transfers. She'd no longer be eligible for the transportation that she now receives, but we could deal with that. The sooner we can walk away from the stigma of the short bus is probably the better for her.
None of the answers feel adequate. Selfishly, I want the school to make good on its admittedly far-fetched promise to take care of Schuyler and her classmates, to give them a place to continue their AAC training, of course, but also to give them a home perch to fly back to when things get daunting. Because they WILL be daunting. That much is certain.
I believe in Schuyler more than I believe in God or Love, but I believe in monsters, too.
46 comments:
People just don't understand when you refer to yourself as a poor parent.. "but you do so much"... yes... but doesn't mean I have screwed up royally at times.
I'd leave her in her school one more year and get the best education for her. As for the other school, maybe you can have her attend a day or so a week starting after next Xmas and have her start to meet those children. Transition her in over time. Take the time to put a proper transition program into place... you'd have a year to do it in.
Also, the children in my youngest's class take turns being his recess buddy and over the years have helped him. She doesn't need that level of help etc... but again, even those days she's transitioning in if she had a "buddy" for the day and then they'd meet her one on one????
Just a few ideas.
Since she is classified and still needs support the middle school must provide that support. They should have what we call Resource Room. It's a place where the kids go one period a day in a small group-no more than 5-for help from a Special Ed teacher. I'd check out just what they plan to offer, and meet the teachers involved far ahead of time. Can you get staying with the same group of kids written into her IEP?
I'm guessing that since you all didn't have Schuyler tested for cognitive/academic functioning, you don't know if she qualifies as anything other than speech/language impaired? (I don't know her primary disability, but just offering what I'd tell any parent.) We have physical disability/other health impairment (PD/OHI) self contained classes that focus a lot on mainstreaming. Do you have those there? What about consenting to testing and configuring a similar set up with another type of self contained class?
I guess I suggest this mainly because it sounds like she may be less outwardly physically impaired than some of her classmates (forgive me if I'm making an incorrect assumption), and they're going to have to place them somewhere. You might be able to get her placed with some of them (at least here, many elem self-cont feed to same middle school self-cont, and so on). That is if you want her placed with them.
I'm not sure what our options are at this point, but we're scheduling a meeting, so we'll know more soon. Ugh.
I have recently become the stepmother of a special-needs Eighteen, who has never had the benefit of two stable parents before. I remember from my own gifted public school education being a challenge to the structure, but I had no idea how much my own personality determined my path, until I've seen this one both enabled and shackled by the programs designed to help her. Also, I took for granted how important supplementing the school's offerings are...she's a junior, and the fact that all the answers aren't going to come from school is becoming painfully clear. It's not just that the programs can only do so much, and it's not enough - it's that the school curriculum doesn't have enough time to teach everything we'd like her to have before her true independence. Mine didn't have enough for me.
I've read your blog for two years now, and I know you and Julie have been a model of how much needs to be done outside a structure. It seems you're facing not only monsters for your daughter, but a new learning curve for yourselves, of how to change modes of the basic problem: how to modify the school's offerings to better suit your child. I don't think that the existence of this task is different for any child whose parents want a Better Education for him, regardless of disability or giftedness; the devil is in the details, and those details have to just be experimented with. There is no right answer, but I really think offering more enrichment helps.
Since this seems to be partly a social monster - you might look for a social group she can belong to that will stay the same from school to school. In my childhood this was dance, art classes, music, etc. My sister swam with the same club all the way up. Then if school is being awful, there's something to look forward to.
I'd like to suggest private, specifically Quaker, school if there is one in your area. My two girls went to a small Quaker boarding school for high school, about two hours away. I know that there are many day schools, including some at the middle school level, although I don't know specifically about your area.
Although they might be unlikely to have a specifically AAC program, my experience is that they are VERY focused on the inclusion, respect, and encouragement of the individual talents and needs of ALL their students, not only by faculty and staff, but by other students as well. And although my daughters did have some religion focused classes, such as the history of Quakerism, they did NOT proselytize, and the values promoted at the school were very much mine--which means, socially liberal, community service oriented, thoughtful consideration of differing points of view, etc. In addition, they were very generous with financial aid for my family--we are nowhere close to having a private school level of income!
My personal experience is based on just one school, with some word of mouth information about a few others, but if the public schools in Plano, however excellent, cannot provide what your family needs, it's one option I would suggest investigating.
This is a scary change, no doubt! I hope that your meeting with the school gets some answers for you that make you feel comfortable. I agree with an above poster that she should at least have a Resource instructor. Would any other kids from her AAC class be moving with her the same year?
I know it's scary, and I know you and Julie will face it with the strength Schuyler needs. :)
Middle school years are indeed brutally hard. I just pulled my daughter out in December. She has Asperger's, and the system just did not know how to deal with a kid who is bright yet disabled, socially generous and fair yet inhibited -- and very, very different. It's the hardest age for girls to be different; they all look and act like little clones of one another and if you are in any way different, there's an almost palpable backing off even by the nicest kids.
What I'm doing, which may or may not appeal as an option for you, is investigating every single charter school in our city and every single "alternative' school, public or private. I've gone through quite a few of them now, and even if I haven't yet met what seems a solidly good place for my particular child, it's been eye-opening and helpful in terms of letting me see what the basic boundaries are for what schools can and are willing to do, what questions to ask, exactly what areas I need them to be flexible in. This takes a whole lot of time, but as you know so painfully, these years are important and difficult ones.
I'm so sorry about Schuyler's program not continuing on through middle school... wonder what will happen to all her classmates.
in making all of these decision, meet with the principal & teachers involved. you can get pretty good gut reaction of how supportive they will be.
middle school is hell for many students. friends are extremely important. having one or two good friends can make the whole thing bearable.
private school for a few years might be the way to go. don't know what your options are. the smaller environment can be a lifesaver for some students. just remember, private is not necessarily *better* than public. there are some bad private schools out there and some great public schools. just explore all the options.
you have had good instincts with your daughter so far. listen to them.
A well-phrased treatise on the conflicting interaction between regular ed (full inclusion) and special education. Can one truly have both at the same time?
Is the correct developmental time for her to be pressed to socially adapt? Are her peer relationships substantially important to her continued learning? Is moving through a school with the same cohort of other children critical to middle school success?
Only you and your wife can decide. You don't seem to be asking for someone else to decide. Trust yourself.
Rob,
You are a great parent because you keep trying and you never give up. If you fall off the horse, you acknowledge it and get back on. I don't think you realize sometimes how rare this is in a parent.
We are just beginning our journey with school so I don't have any practical advice. I just wanted to say, don't underestimate Schuyler. She is fearless and able to deal with so much more than anyone ever thought she could. I think she could handle a new school and new people (wouldn't she have to do this anyway if you moved?).
She's a rockstar. I don't think she'll have any problems making new friends and learning new things. If her teachers are on board with helping her integrate into the classroom setting with her device, she should be fine.
Of course you worry, but she may just blow your socks off.
R.
How does Schuyler feel about her regular ed classes and the kids in them?
Have you considered a small private school for Schuyler? We found an excellent school for our three kids where the classes are small and the emphasis is on academic excellence and inclusion.
There are no tryouts for any of the sports teams: if a kid wants to play football or swim or run track they're automatically on the team.
There is an atmosphere of cooperation and tolerance that is extremely unusual among kids, particularly middle schoolers and high schoolers. Students come from a wide variety of ethnic backgrounds and there are optional trips to Europe and chances to volunteer for a number of community-based causes.
My two sons graduated from the school and my daughter is a sophomore. My husband and I can't praise the school high enough, but tuition is very expensive.
If you don't want Schuyler to get lost in a sea of adolescents and you want her to have teachers who will do their best for her you might consider opting for a private school.
Have you considered a small private school for Schuyler?
We've talked about it. The only problem is that in a private school, she's not bound by the same federal laws that the public schools are. That's an important distinction.
How does Schuyler feel about her regular ed classes and the kids in them?
She's not terribly close to any of them in particular (whose choice that is, I have no idea), but she loves them without reservation. From what I see when I pick her up after school, she loves some of them more than they deserve, in my opinion.
I want to second Lindsay's suggestion of a Quaker school, even if it requires a move. One that deals with learning issues is Delaware Valley Friends School in Paoli, PA; there must be others. Whether they have the ability to adapt to Schuyler's particular situation could only be determined by research, but you might start there if you need to look outside your system.
Our religious beliefs are similar to those you've expressed; respect for individuals and their beliefs, of whatever kind, was a hallmark of the Quaker prep school our daughter attended. Quaker schools are values-based schools, rather schools committed to promoting a specific religion. We were in complete agreement with the values, and had no problem with how the school handled Quakerism, despite a strong allergy to organized religion.
We were continually struck, throughout our daughter's tenure at her school, at how faculty and staff regarded each child as an individual, and how fervently they tried to ensure that each child's needs were met to the extent possible. The focus was not on what the parents wanted, nor on what the child wanted, but what best could allow the child to learn, grow, and become a whole member of a broad community.
Did we butt heads with the school? Oh, yeah, and you haven't been to battle until you've argued with intelligent, determined Quakers. But never, ever, did we have the feeling that they had anything but our daughter's best interest in mind. Nor did they ever disregard our concerns; we were all on the same team.
I teach a self contained class in Middle school. I think you have several options for Schuyler. I have read your book and am guessing but if she still has OT she will qualify for resource as well as direct services in Speech and OT. You might check out the self contained classes to see if she would be comfortable in them. We have a students with selective mutism who comes and visits when she needs to be in a calmer environment. She brings her school work and sits in the back until she is ready to join her class again. I also help her organize some of her notes.
I also wonder if all the parents in her current class insisted another AAC resource class might be started at one Middle school. All my students are out of district so they can attend the school that offers the LRE program for them.
You have a year. A lot can change in a year. :-)
Having had to switch schools with my daughter at the exact same age as Schuyler, I would probably not have done it. The social trauma she experienced having left old friends and unable to make new ones was awful. And that is a hard age for kids to make new friends. But you could always ask Schuyler what she would like to do and if she would want to stay with her old friends.
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I have 3 kids currently in PISD: 10th gr, 8th and 5th. Our middle school is very large with an average 6th grade class of 400 students.
Even with a fabulous principal, engaged teachers and active parents, it is absolutely a "sink or swim" environment even for gen ed kids. The academic pressure to succeed and the social pressure to fit in can be crushing. Leaving the cushy elementary school nest was extremely difficult for my older son and he wobbled his way through most of his ms years.
The best thing you can do for Schuyler now is to talk, talk, talk to everyone you can find. Seek out the principal, the teachers, current parents. Join SAGE (Plano's special and gifted ed group) for real-time advice. Send an email to Missy Bender, PISD trustee. She has a 5th gr daughter at Daffron and really cares about elem kids.
I have learned (painfully) that no one else is going to advocate for my child but me. I have also found PISD to have a heart for children, buried as it is under all those layers of bureaucratic forms.
For whatever it's worth, the year I spent looking for and negotiating a middle school for my daughter should have been made into a documentary. I won't even go into the reasons for the title: We Don't Have No Class for Your Mentally Retarded Daughter; My Odyssey through the Los Angeles Unified School District's Middle Schools. Suffice it to say that she is finishing eighth grade this May and it turned out just fine. Now I face high school.
Good luck, stay strong. Schuyler is beautiful and I imagine with the help of you and her mother, will forge her way onward.
No words of wisdom b/c we haven't been there. I don't evny your position, though, I know it is incredibly painful and difficult. We did have a comment from a school specialist tell us last year that we should always remember that the school is "only required to provide an adequate education" and that is a relative term dependant on who is interpreting! So that was our answer for Faith.
If you want Schuyler to go to the same middle school as her current peers, could you move so that you would be within that Middle school boundaries? Moving is not cheap and a pain in the ass, but it would keep her with her friends.....
You are at the bottom of the next moutain. And because you've already climbed other mountains, you're tired. And well aware of the energy you need muster to do it AGAIN.
Hopefully we, your internet stalkers, can send you some good energy to help with the next climb. But, the one thing you DO know, is that you CAN do it, and do it well...once you start...
Thanks in advance for showing us the way. -- Stellasmom
As a middle school teacher I won't lie to you, it can be brutal for some kids. I would push really hard for allowing her to stay with her current students.
I am almost sure that you won't be able to get something like that in the IEP but you could try. Ultimately I think you will probably have to rely on the school system doing what is right and letting her stay.
Most school districts have a n appeal process if they deny your transfer. In CA. the appeal is settled by the county office and not the school district. I don't know if it is the same in Texas. Our County office leans heavily towards parents when a proven hardship or IEP is in place.
Good luck. The one thing I will tell you is she will be fine because you are their watching over her. Sometimes the saddest thing I see as a teacher is students with no home support at all.
the transitions are so hard! hard on our kids, and hard on us. Queen Teen is in the 8th grade and we're debating holding her back and leaving her in Jr. High, or moving her up to the High school with her class. After two years, she has finally settled into her new school and her new teachers and now it's all changing again. None of us are ready.
I'm starting to think this is never going to get easier.
Have you talked to Schuyler about it?
Is homescooling not an option? The school system still legally has to work with your child if she continues to qualify, even if that means she has private tutoring or parent led education at home.
Have you talked to Schuyler about it?
Of course. She's processing. Well, we all are.
Is homescooling not an option?
I'm only speaking for myself here, and not commenting on homeschool in general, but I am smart enough to know that I am not smart enough to homeschool my kid.
I don't think being smart enough is the problem for either of us. But I find the idea of full time homeschooling to be overwhelming. Teaching my child extra math and english... no problem.. we do a little (30min) every day and on weekends and holidays. Planning or buying a curriculum... making certain enough is taught, yet still doing all the day to day things...
School... even though it's currently a battle (hoping to change classrooms - 8yr old - and we're opting to move to special ed... not really happy about it... but...) is still the better option.
In my totally anonymous and non-parent-y opinion, my vote would be with moving to the middle school district that her AAC friends will go to. That's the only place in Plano she'll have the social safety net of other kids like her, and if she has that, the lack of actual AAC classes won't matter as much. Though I was "special" in a different way, going from my elementary school special program to a "mainstreamed" junior high where no one else was like me meant I spent several years in total isolation, which is pretty brutal at any age.
In my totally anonymous and non-parent-y opinion, my vote would be with moving to the middle school district that her AAC friends will go to. That's the only place in Plano she'll have the social safety net of other kids like her, and if she has that, the lack of actual AAC classes won't matter as much.
Well, that's the catch. The kids in her AAC class come from all over Plano, so when they reach the 6th grade, they too will be sent back to their regular home school. They'll all be scattered to the winds.
Oh yes, the future for our children (or grandchild in our case). She is 4 right now and the terrible hunger of Prader Willi has not struck her as of yet. For that we are thankful, but it is always there, waiting in the background. I so dread the day when it will strike and all that it entails. Locking everything: refrigerator, cabinets, etc. and making sure she does not eat non-food items. Yet, a very few of them escape this terrible thing and, so the the hope is there too.
As to Skyler's school situation, I don't have anything I can say, but I know you will come up with the best solution. You have been a wonderful parent (and Julie too) to her and it has been nothing short of amazing to watch you grow as a person. To tell you the truth, I used to read you journal for a short time before you had Skyler and I thought you were somewhat of an obnoxious idiot (sorry, but I did). So it is just that much more amazing to see how you have stepped up to the plate. Skyler is one lucky little girl!
Thank you. I think.
I'm sorry Rob, but that last comment is pretty funny! I love honest folks.
I know that private schools aren't bound by federal laws, but I wouldn't let that dissuade you guys from checking them out. The one my son goes to (St. Rita School for the Deaf in Cincinnati) follows federal law to the letter. They get a lot of kids whose home districts foot the bill and they run very professional and well oiled IEP meetings and follow all the laws in order to keep everyone happy. If you found a good private school that was qualified to handle the AAC technology, then you might even be able to argue successfully that your home district can't meet FAPE due to LRE. I know I'm getting way ahead of the game here...just thinking though.
And as strange as it seems to give a deaf school a second thought for Schuyler, there are many deaf schools that are opening enrollment to children with aphasia and apraxia as a way to stay open. Our school (SRSD) has an awesome program for hearing children who are nonverbal. Some of the kids sign, some use an AAC, and some use both. It's pretty impressive actually. Just keep your eyes open to all the options I guess.
This doesn't have anything to do with this discussion, and I'm probably only saying this because I am having an incredibly horrible day, but has it occurred to anyone that I might not actually enjoy hearing about what an asshole you thought I was once upon a time?
I mean, yeah, honest folks are swell. But I don't know, does anyone every stop to think about the things they say? If you want to tell me that I have an admirable trait that you think deserves recognition, then why would you want to end it with "I used to think you were such a dick, but now you're A-OK!"
It feels like you've decided to give me a cake because you think I'm so grand, but then you intentionally sneeze on it right before you give it to me.
I don't know. Here's my opinion, and you can take it for whatever it's worth to you. I have grown a lot in the past few years, but I'm not a totally new person. When you talk about the obnoxious idiot you thought I was, you're still talking about me. And if that's what you think, then that's great. But when you decide to tell me that but couched as praise, it still feels like an insult.
You thought I was an asshole, but now I'm okay. I think it's great that I now meet your standards and approval. But just because it's the Wonderful Anonymous Internet doesn't mean you're not being rude when you say it. Because I might not have changed at all. I might be the same obnoxious idiot, only now I write about the ONE THING in my life that I'm getting right.
Anyway. Sorry. I thought that saying something might make me feel better. Turns out, it didn't. As you were.
FWIW, I am also having a horrible day. A plane crashing into a former workplace, the loss of life, and senseless batsh&t craziness of that is not helping.
I think the poster meant to be funny, but yeah, it was about like a cake with a loogie in it.
We all are alternately buttmunches and saints in our lives. We have no choice but to take that in stride.
And good luck with the middle school thing. If any parent , ever, has faced the middle school life of their child with anything but sheer horror, they're not paying attention.
And with a monster in tow, well, double that.
Best wishes, truly.
Well... I don't know anything about the US school system, but it sounds like the main problem is that the AAC users are being split up. So I suppose you and the other parents need to get together and campaign for your children to be placed together, however that can be achieved.
(If this is a double post, just ignore my last comment. Blogger decided it didn't like me for some reason!).
Just finished your book. I'm wowed by Schuyler, and I hope that my own daughter will be able to face the world with even a quarter of the determination that your girl has.
I wonder if you and some of the other parents could set up an AAC extracurricular youth group, with a pro facilitator and space provided by the school district, to meet weekly or something like that? Something that crosses school districts to keep the kids together, and could persist all the way through high school. It wouldn't address the overall problem but it could provide some support.
Thank you, Jeanine. And truly, Rob, I meant to be funny and, yes, it didn't come out the way I meant it. For that I'm sorry. As for the anonymity of the internet, I would be more than happy to give you my email, home address, facebook page, etc. I'm not that horrible person that leaves anonymous comments with the intention to hurt (as a matter of fact, I rarely comment at all). But since I obviously did, I apologize. Hope you had a better day today--I realize you didn't need stupid comments like mine.
Oh I am so sorry. We just made the leap to middle school and it was and still is terrifying and my daughter does not have special needs. Does she know any kids in your neighborhood? What are they like and how is your middle school? I'd look at it carefully, she might be better off if you could send her to school with kids she knows (the one her current school feeds into). Switching schools in two year might be too much especially since it sounds like she is making real strides now. My best advice (which I know you guys will do) is go to look at both schools. My daughter's school had a week before school started for them to go and get to know the building and teachers. Talk to other parents of middle school kids to find out what skills she needs (lockers, carrying books, writing down assignments etc.). Hopefully you can get all of these needs addressed in an educational plan. Get your swords ready, you guys are really going to have to push to make sure she gets everyting she needs. Good luck!
I just read the other poster's responses and smal private school might be another option. The problem of course is cost and finding one that shares your values. Oh boy you guys have a lot to think about ove the next year. Good luck. I know you'll do your best. You guys both seem like the most amazingly strong parents.
I loved the mountain analogy. You are at the bottom of the next mountain, and you're tired and weary from the climbing. Take time in the valley to refresh and regroup. Look around and look back at the mountains you have conquered. Don't be in a hurry. Give thanks for each individual that has helped you along the way. Give thanks for the strength you've had to pull, push or be prodded by Schuyler.
As you contemplate the previous mountains, realize they are there to serve as a reminder and to give you hope that you are able to climb the next one. As you begin the next ascent it's familiar territory--okay, maybe a little different terrain. But, you have done this before--one day at a time, one step at a time, maybe a slide backward, maybe a small skip forward. Again there will be those in your path to help you along the way. You are good parents (all parents have their moments of doubt). Your extreme love for Schuyler will give you the strength, hope, and momentum to continue your climb.
Ten years ago, I was an elementary school student at a Plano school. Our school happened to be the center for deaf education. I grew up with those kids from kindergarten onwards, but I never learned much beyond their names. Once a week or so, the 80+ kids in the grade would sit in the center of the classroom spaces and the deaf-ed teachers would teach us a little sign language. The kids were never a part of our regular classroom. They couldn't communicate with us. They looked different from us. They wore funny little vests for their hearing aids. And we taunted them, endlessly.
In high school, a deaf student from my elementary school offered me a ride home after a school event. We really hadn't spoken much in the intervening years and I was kind of shocked. She was the student that we had, without a doubt, been the most cruel to. And the whole ride home, crammed in the backseat of her old pick-up truck, the country music blasting, her and her friend signing rapidly at the stop signs, she did her absolutely best to make sure I was included...talking to me, showing me a funny text from a friend. I was floored. I hadn't perpetuated the cruelty back then, but I had certainly participated. And here she was, putting forth a considerable effort to include me on our short ride home.
And then, this year, I spent a semester in Germany and made friends with a deaf student and her interpreter. And I began to really understand what inclusion is supposed to be. We loved her, because she was her. Sometimes, we had a little extra patience or would assist with something simple when she asked, but at the end of the day, those things were periphery. I don't know why my elementary school couldn't create that environment.
I know that Schuyler's situation is not that of a deaf student's. I know that we are 10+ years out from my elementary school experience and that a lot has changed for the better in the approach to special needs. But...I think even in the same district, the compassion/understanding of a group of students is based largely upon the leadership at each individual school. Just keep that in mind as you make your decision.
Rob, my son uses a Vantage. He attends regular ed with a 1 to 1 aide. He also goes to a resource room for reading and math. His aide has had AAC training and sign language training. She programs his Vantage and modifies all of his curriculum. I think you could recommend to have a 1 to 1 personal care assistant for Schuyler because she needs the support to attend the regular ed class. this is the least restrictive environment for her. I can't imagine regular ed teacher having the time to program the Vantage and modify HW and tests. I would fight for a 1 to 1 aide w/ training on the Vantage. Good luck!
I'm a sign language interpreter and I've worked with deaf kids who are mainstreamed into regular classrooms so they are the only deaf kid in the school. I have observed their social experiences to be much like your daughter's.
As I read through your blog, I keep thinking it would be a great thing for your daughter if there was a deaf/hard of hearing program where there is a group of kids using sign language in her school. I know that Texas has a HUGE deaf community, mostly in the Austin area I think. Could give her the opportunity to communicate easily and spontaneously and develop "peer" social skills. It looks like she knows some ASL from some of your comments so just putting that out there. Also, if ASL is an option as a "foreign" language in high school (it is in many schools), great option for her!
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