aghhh, hope?
Ebunny59
school. She is at war with herself, on whether she wants to be a
typical kid, or wants cut a little slack because of her cp. Her dad
moved out within the last 3 months, and she has not taken that well.
She has missed a lot of school, because of stomach aches. She also
doesn't like her special ed teacher. Can't say I like her much
either, but I have been nice to everyone this year, so far, until IEP
time in a month or 2.
Today she told me she wants out of special ed. The kid has a ton of
homework anyway, and I doubt there is much they cut her slack on. But
the special ed teacher makes comments, and Kendra said she acts like
she can't hear her. Today, she told someone that Kendra always waits
until the last minute to do her homework. It is true, because I work
Tues., Wed. and Thurs. nights, and can't do her homework with her,
until the morning before school. BUT, she gets it done on time, and
her mid term report was 2 Bs (science and social studies), 2 Cs
(writing expression and math), and a C+ (reading). She is only in
special ed for reading, but the special ed teacher helps with all
subjects.
Lets talk about the Eco. I have accepted the fact they won't teach
her to do anything on it, and just don't even push it's use anymore.
But it makes me so mad, when the SLP tells me, she didn't know how to
find the words, and we didn't have time with the other student in Wed.
session. Always, always, always, there isn't enough time to use the
Eco. I suggested, that she write some sentences describing a cookie
recipe the teacher sent home, in speech. The teacher sent me a note
home, asking us to put the sentences in a notebook. I sent a note
back, she knows how to do this at home, but needs to have 5 mintues
time to be allowed to do it at school. I got a note back, did she do
the sentences by herself, and can I print them for her. If they want
to see her in action, they have to watch her! If they want to know if
she can find stuff by herself, using either spell page, word
prediction, or Minspeak, then they need to have a simple conversation
with her. I asked the SLP to spend 1 session, just having Kendra
talking on the Eco. We do it all the time at home. No, instead, she
sends stupid recipes home, and has the kids practice saying the
words.
I am sick of articulation, seriously. With stress, comes worse speech
intelligiblity. Her dad has made sure there is plenty of stress. So,
rather than try to make Kendra talk like everyone else, why not teach
her to use what she already knows how to use (Minspeak)? At least she
is working on the parts of speech with Kendra now. Accomplishing
something I guess. But the SLP wanted me to make it easier for her,
and pu all the irregular verbs on a page. I told her those verbs were
all CORE verbs, and she can use tutor on the fly, word prediction, or
icon tutor, to find the core words, then find the correct endings. It
takes too long, GRRRR!
I just don't know what to do. I already talked to the school
counselor, and that accomplished nothing, it has only gotten worse,
and they haven't done anything about it. know why? Because she
misses too much class time already, with being "sick", her frequent
bathroom trips (which i believe she is doing again, to get out of
class time), and with her 5 therapy sessions a week. They don't have
time to pull her aside and ask how things are going. They don't have
a half an hour, to ask her if her life sucks this week or not. If
someone doesn't do something soon, she is going to be depressed.
She's not my happy little girl I have had up until this year. She is
just miserable, and I can't blame it all on her dad (would love to
though).
I am going to go talk to the principal, when Christmas break is over.
By the way, we all love this principal. I havne't heard him give one
single parent a hard time about being in the building. He actually
enoucrages it! Haven't heard one single staff or parent say anything
bad about him, or wish our previous pain in the butt was back, LOL
Maybe new blood can come up with some solutions. I am wishing they
would consider my previous proposal of half day of school, half day at
home. She can do more at home in that half day, than she can in
school for that half day, I promise you. If they send the books and
the notes home, we can do it, without switching classes, without
waiting on the rest of the class to settle down, without being rushed
to get everything done, and we can use the Eco to do most of her work,
and she might actually learn something along the way!
Amy
Dawn Caldwell
There is always hope! :)
First things first.
You can easily accomplish half day school/half day homeschool, but the tradeoff may not be one you like. If you go this route, you are responsible for all academics. Kendra would be allowed to attend for electives/lunch/recess type times (non-academic times). If her school is like ours, the daily schedule makes this quite impossible, i.e., none of those activities are connected in a long enough block to warrant traveling to/from school.
There are other options, such as K12 online academies. Each state has their own version (Colorado is COVA and it's free - they provide computer, internet access, curriculum, paper, etc..). It is a state public school that is fully online and curriculum is both books and downloaded. They have social groups for support and a SPED teacher that works with you weekly, and a gen ed teacher that works with you bi-weekly. I have a friend using it here in CO and loves it - the support is way more than the base I just mentioned (which is what is quoted from their site.)
You could flat out homeschool = there are tons of curriculum choices and support groups. I believe you homeschooled your older children?
What you must decide at this point is what you want your world to look like - regardless of the barriers. If you think that Kendra would blossom under homeschooling (b/s then you could use the ECO all day, the stress would be reduced for articulation, you could work on the feelings of her loss of dad, etc...) than that is the goal - removing roadblocks to homeschooling, such as finding a caretaker for when you are at work. If you think that the public school is the right place, then you need a concise, clear plan of action. List your top 3 concerns and 3 possible solutions for each concern (solutions being what you can do to help them fix these concerns - such as emailing them to find out what they need ahead of time). Then go to the principal. If that doesn't work, go to mediation.
We have the same issues. While the school will and does use the ECO, the aides need much more training in where icons are and more time to use it for natural conversation, rather than schoolwork. To that end, I find out what they are working on and provide the icon maps (either written or a smart board from PASS) and provide it in the b/f book. I also had Jane Odom (PRC Education Manager) meet with them while she was in town. My SLP (who is very nice) doesn't naturally think about the ECO so I am the one saying, "he can do that on the ECO".... It is frustrating, but I've decided that, if I continue to do it weekly (via onsite, emails, showing them in person, etc..) and I help her by programming the Go Talk 9s that I bought for the other kids to use during communication circle time, eventually we'll all get trained and everyone benefits.
You cannot continue to do the same thing and expect a different result.
My thoughts and prayers are with you as you deal with both school and hubby issues.
Dawn
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R. D. Robinson
Merry Christmas,
Denise
...Callie and Emma's mom
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Denise Robinson
...Callie and Emma's mom
Ebunny59
excused. I haven't suggested 1/2 day for a couple of years. I
thought back then, the spec ed director might actually go for it, but
the PITA principal wasn't crazy about the idea.
Yes, I still homeschool 2 kids, through an online school in our
state. I would love to have Kendra, but no one would support that
decision, and not so sure I would either. She spends her days trying
to convince me she wants to be homeschooled, and that she doesn't need
any friends. The online school has said that whatever is in her IEP,
they would pay for therapy wise, which would be a whole new set of
therapists, because our current ones are jam packed. But, I am
thinking about coming home, they just have me teach her at home, what
they are teaching the rest of the kids in school for that day. Not
even talking about half a day. She gets out of lunch at about 12:45
(she gets free lunches, don't want to give that up). If I picked her
up then, she would be home from 12:45-3:00. Since the rest of the
kids have about a 20 minutes of recess time, and spend 15 minutes
getting ready to come home, she would only be missing 1.5 hours of
class roughly. I don't care what class or classes it is, at the 4th
grade level, I am sure I could understand it to teach it to her. They
can just send the teacher notes home, the book home, study guides, and
any homework, so she can do the same thing as everyone else, just in a
more relaxed atmosphere, and at her own pace. I would even agree to
them just giving her a study hall at school, and a tutor if they
didn't like the half day at home. She just needs to not have every
minute of every day, cram packed with something to do, with no spare
time for using the Eco. If I got her out of special ed, her stomach
aches might go away also, if she didn't have that teacher to deal with
everyday. I don't know why it wouldn't be possible to make
accomodations to the regular school work.
I have 3 teenagers, I don't need anyone as a caregiver. They have
been doing it this whole school year, and between the 3 of them, they
make a pretty good caregiver. Kelsi does her homework with her,
sometimes, Drew is the calm cool colected enforcer of the bunch, and
Austin is the fun one that plays with her.
What I want my world to look like? The dad thing will eventually grow
old, she will get used to it. I would like Kendra to go to school for
specials, therapy, and lunch/recess, just to have the advantadge of
being around typical kids. I would like her classes to be taught in a
different room, at her own pace, and to not have to keep up with
everyone else. I would like it for all the teachers to stop
complaining about her missing too much class time, for bathroom,
missed days, or therapy. As I said, I believe she is heading to the
bathroom to get out of class. Since she was just potty trained 4
months ago and still has accidents, they can't tell her to hold it.
She did the bathroom thing 2 years ago, and I had to start giving her
a quarter every day she went 3 times or less all day.
I have a question, for Robin or anyone else. Alternative testing, are
they to prove the child can do the normal standards for the grade they
are in, or are they to just show that the child completed a year's
worth of learning, and is progressing, and is following the IEP?
Amy
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> ...Callie and Emma's mom- Hide quoted text -
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Ana Saavedra
I haven´t talked to you for a while.
Amy I´m really sorry about Kendra´s situation at school. I thought this only happened in Spain. Well, the fact is I decided to take Pau to school just 1/2 day two years ago and he´s definitely made a lot of progress at home with a special ed teacher, OT and me doing the literacy and access to computer. I have to ask the neurologist to sign a special medical certificate every year.
However, Pau is only 10 and I think he needs the school, he´s quite happy to see his friends there though the staff are making it really hard for us. In fact, as he is growing up the teachers complain they can not take him to the toilet and have decided to put a diaper again. YOu can imagine we were mad about that and asked for a special meeting with the General Inspector, she obviously thought this was an inappropiate measure. After the meeting, the teachers were told to remove the diaper but they let him pee himself on and then change his clothes, that makes me furious.They say they don´t want to assume the risk of a possible accident ( as it has already happened) taking him to the toilet. Pau just doesn´t like it, as you can imagine.
I´m just so depressed and think this is so unfair for Pau and us. We´ve been working so hard on that.
We live on an island and there are not many options.. and moving to the mainland is not so easy as both my husband and I are civil servants.
At least in the States you´ve got your IEP goals and regulations but in our community we don´t even have the simplest rules on special education.
I just feel so depressed and I just want the Christmas holidays to start. I have a meeting with the inspector after Christmas to see if she can offer any other schooling option, but I´m afraid this is going to be really difficult.
You know the Christmas lottery is a big thing here in Spain, I´ve bought more tickets than ever. I wish I could win it , I´m not a materialistic person, but my dream would be creating a high quality classroom for motor disabled kids here, they are so underestimated.
Amy, if there is one thing I´ve learnt with Pau, and I guess you probably agree with me is we can´t afford losing hope. We´ll find a way for our kids.
Merry Christmas to you all.
ANA
Denise Stier
Hi Amy,
Have you ever looked into joining up with other parents who homeschool in your area? Where I live, there are homeschool groups who meet every week or so to do music, art, Phys Ed, etc, and to have time for kids to socialize. They do field trips to historic or educational places just like they do in public schools. That would eliminate your need to send Kendra to school for part of the day just to be around the typical kids.
I definitely agree with you, the amount of real schoolwork that gets done in a day can be done in a couple of hours. There is a lot of time spent in schol transitioning from one thing to the next, and dealing with a room full of kids with all their different needs can take up a lot of time. It is exhausting for Melanie to be in school all day. A long walk to lunch with her walker, long walk to PE, music,etc, and she is wiped out at the end of the day. She really loves school and being part of the group, so I would never consider homeschooling. She would be heartbroken to not go to school. But is she were having difficulties like Kendra, it might be the best thing.
Do you have a counselor for the kids to deal with the separation of you and your husband? Maybe you could ask the school psycologist to talk with her? Our school has a program called Banana Splits for the elementary kids who have had their family divided by death , divorce, military service, or whatever. The kids can talk about things and support each other. Maybe they have something similar at your school?
I don't know if any of this is helpful, but maybe it gives you some things to think about.
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Robin Hurd
From: Ana Saavedra <asaav...@gmail.com>
To: aacpa...@googlegroups.com
Sent: Fri, December 18, 2009 1:55:05 PM
Subject: Re: aghhh, hope?
I am sick of articulation, seriously.. With stress, comes worse speech
Ana Saavedra
There are other issues like Pau´s potential for learning, the tutor would say that his answers using his eye-gaze is not reliable. Would you say that a kid who answers correctly 4 out of 7 times is not able to learn ?. I was the one who started sending symbols and adapted materials and they have never agreed with that but when I tell them to forget about my goals or pictograms and suggest me different ones they wouldn´t be able to tell me what it is they want to teach him.
Pau is a vey nice boy, he likes his friends at school and I´ve told him that the toilet is broken at school and that´s why he has to wear a diaper. He´s told me he doesn´t like that, he says "we wear diapers only at night" . Even if I try not to make a fuss in front of him he knows I´m not happy with the school at all. If I get angry with the teachers when he comes back home he kisses me. He´s really smart.
I don´t know what I´ll do, but I won´t accept the diaper for next term and that could mean I may have to get ready for homeschooling until they find an alternative. If we decide to leave this school then they could be sending us to a state school which is not special ed, which has advantages as with a bit of luck they are more open-minded but with a big disadvantage , which is they don´t know much about our kids. I´m just so tired of having to leave this in the hands of destiny. It will all depend on the team we come across and how much they will allow me to help me. Some professionals are just too proud, and I know perfectly well what I´m talking about because I´m in teaching. Why is it we all have such big egos??. As a teacher, I know i don´t have all the answers. I´m constantly learning.
See If we can manage to go to the States.
We´ll have to keep on having faith
ANA
Mcda...@aol.com
Trishasmom
Trishasmom
If we always do what we've always done, we'll always get what we've always gotten
Ana Saavedra
I´m so tired of being considered the loony mom. Haven´t they ever told you to be just a mom, well, sorry, but we can´t, can we???. It´s just not possible because if I hadn´t had the expectations I´ve always had, Pau wouldn´t have achieved the unthinkable things he´s achieved. Nobody would have dreamt the things I´ve dreamt. That has definitely taught me a lesson, never give up in spite of everything.
I thank you all so much for your support.
ANA
Ana, If you don't mind I have a ? for you. When you say see when/if we get to the states are you talking about the USA? What do you need to come here? We do have rights here that I think myself I forget about........I think this might be due to the fact that even with the rights it is a struggle to get your kids what they need to learn and grow and thrive. I so wish it was easier for you and your family. Pau is so lucky to have you and his Dad advocating for him and I do know he knows that for sure. Hang in there I know we are all pulling for him even if we can't be there in person.M-C
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Mcda...@aol.com
Dawn Caldwell
I apologize - I haven't been reading all of the emails. I've tried to reply once to your email but didn't send it as it was so bitter (about our situation) that I thought it wouldn't be overly helpful to you.
I can totally empathize with the desire to go somewhere where the services might be better, where the grass might be a little greener and living seems a little easier. :) There are many times that I have envied Robin for her early introduction to Katya that led to her children going high tech/high location quickly and for having teachers in the family that helped. There are many times that I have envied those who had access to literacy programs specifically designed/tested with children like mine, i.e., Dr. Light. I've envied those that could access the Bridge School. And, I've envied Schulyer's dad for having access to a public school with a heavy AAC bent. But, while those places/circumstances exist, it wasn't in our realm - either due to Mason, family, finances or other issues.
What I've come to realize is that, no matter what the circumstances or location or laws or IEP, it really all comes down to the parents/family and their hard work.
To give you an idea, I live in what is considered a high income suburb (average income $100K/home), a very well educated suburb, quite homogenous with low transient/English as a second language issues. Thus, what should be a very ideal situation with lots of resources (people/$$) for children with special needs. Yet, with all of that, it is just as bad, if not worse, than stories I hear from other families who live in communities that deal with lack of funds, lots of various languages/transient students, etc..
There are only 3 AAC team members for the county - each has about 50-75 kids on their case load. I love our person and she loves PRC/my son, but she admits that she doesn't rememer how to nav the ECO/84 location, it is me showing her. Our traditional SLP (another lovely woman) doesn't naturally think to use the ECO because she doesn't have AAC training and/or doesn't know what it can do/how to do it - she is still focusing on verbal output from a child that can't physically say more than "ba" and "dow" at age 9. It is me telling her, "he can say that on the ECO" or "give me the game words and I'll send you the map of where all the words are located on his ECO". The aides all tell me that they need more training on where things are located (because they don't have time/training focused on just talking with the ECO) so it is me sending them smart boards of how to find words. [And this is all from snippets of conversations that are occurring as I'm going in/out of the school which I do frequently. I don't want to imagine how many opportunities are lost because of lack of support/training when I'm not there.] It has taken 3 years, a lot of money, attorneys (at least $15K), advocates and frustration so high that it required marital counseling, to get a real academic experience for my child. I've had to argue that we would teach phonics - not simply whole words, that we needed audio books and braille. I've had to bring in experts from the Colorado School for the Deaf/Blind to convince them that Mason required much more support in this area (vision). I've also had to bring in experts on AAC to show that their services were lacking/not appropriate for Mason. (Part of all that fighting involved getting the school to agree to allow an independent AAC SLP to come in to the school weekly to provide support.) This is the first year that we have academic goals, that they think of Mason as a student / that he can learn, that they agreed to use the specialized curriculum (that I bought at $1K), that everyone is on the same page, etc... [It took them 3 years to acknowledge that they had no curriculum suitable for a visually/physically impaired child who uses AAC and that there was no way to argue against my curriculum which was specifically made for such children.] We are, finally, having a banner year at school but there is soo much more that can/should be done!
So, while there are laws and IEPs here in the states, I just wanted you to know that it's not as simple as just coming here/moving here. Yes, there are a lot of advantages but it's not as simple as, my child needs this and bam! he gets it. We've spent a lot of time and money "reminding" everyone what the laws say and there have been many stretches of not wanting to go to school because of all the politics. I have purchased or made every imaginable support for them at huge long term financial consequences to us.
It may be hard there, but so much of what works for our kids comes from us parents - I know that is true of Robin, Robert and everyone else on this list serve.
A lot of what we are doing/using might be available to you - curriculum programs are available from the major makers, ISAAAC/USAAAC is online, conferences might be near you, etc?? IDEA and IEPs are available on line - perhaps you could use it with your community to show them what is being done here?
Just some thoughts from another mom who has been told "let us worry about school - you just need to be the mom [so that I would rubber stamp an IEP]" "why does he even need that [pointing to Mason's AAC device]" and "We don't have money for an aide - you need to look elsewhere for your son's schooling" - all from the principal of her son's PUBLIC school.
Dawn
----- Original Message -----
Dawn Caldwell
Ana,
One of the things I wanted to do with our therapist was to switch roles, i.e., the therapist watch me interact with Mason/ECO for a session and then provide corrective ideas and/or new ideas. It didn't happen due to her maternity leave, but I still like the idea.
Would you be interested in something like that? If so, there are 2 therapists here in Denver that are excellent, take outside payment and would probably be open to it. You could do it in several ways - either real time by Skyping or via video feed - such as YouTube or video clips sent through the mail. If so, let me know and I'll email you the contact info for Brian/Jill and can touch base with both to give them a heads up.
It might not be as ideal as having someone working directly with you/Pau onsite, but it's still providing support/expertise/guidance/closer to what you want without the burden of moving.
Dawn
Ana Saavedra
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Eleanor Giriyappa
HI Ana,
We also work on the Janice Light reading program. You will be happy to hear that it is now available through Mayer-Johnson and is called Accessible Literacy Learning (ALL). After several years of doing it on our own using Dr. Light's principles I was delighted to be able to buy the binders. I was trying to wait for the computer program but there must be some glitches in it as it is over a year since it was suppose to come out.
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