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Thread: a little of everything!

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    Distinguished Community Member andromeda31's Avatar
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    Exclamation a little of everything!

    Hi!

    A reply to an older thread: That's so cool how you met Jim, Rose! It must have been fate! :)

    I've been rereading all the postings about the bus stuff. Ugh. So far, nothing has changed. I am not too happy and it is really 'sticking in my craw' tonight so here I am up late when I've been so good lately about going to bed at a decent hour. Just wrote up an email to the spec ed director who I had contacted to help with this issue. Here is what I have:

    Hi "director",

    I am just checking in to see if there is any progress in reducing the amount of time Caitlin spends riding the bus? I heard a rumor that no changes were going to be made. I realize that the KidsCab option is not feasible for Caitlin, but perhaps some of the other riders on her route with long ride times would be interested in that option, thus shortening the ride for those left on the bus route. The 6:30am pickup is extremely difficult for us to be ready for. As you know, Caitlin is completely dependent on me to get her dressed, fed and out the door in the mornings. Before I can get her dressed, I must wait for her to go to the bathroom. If I do not wait for the morning pee, she has the potential to flood her diaper and pants/shorts before reaching the school. Frequently, this leaves her without much time for eating breakfast. Today, she only had 8 minutes to eat a waffle before the bus came. I had to take the plate away from her, quick wipe her hands/face, throw a coat on her and wheel her out the door. The afternoon time has improved a bit (4:15-4:30pm) from the time state on the yellow card (4:40pm), however, there was one afternoon where the bus came late (about 4:43pm) due to a mechanical incident. When I took her out of her wheelchair, her diaper had flooded and her shorts were completely wet. In fact, she has developed a pressure spot on her backside. Her skin is pretty sensitive and spots can develop quickly but take a long time to heal. Perhaps the district might consider amending their transportation policy to something like the Neenah School District has in place:

    572.231 Students shall not ride on a bus longer than one hour and fifteen minutes under normal conditions. Generally, students with disabilities served in the District and requiring special transportation will not ride on a bus longer than forty-five minutes under normal conditions.

    Thank you,

    We had a power struggle with the school or bus driver, both claim it is the other one who insists upon the chest harness being worn. C has not worn that since 2009 when she was so sick, in fact, it says right in IEP, only needs to wear it when ill. I plan to have it completely taken out of the IEP. When she slumps over with that on, her airway is completely cut off. It is better she slump completely down to her lap. I actually let her like that during a VEEG so the doctors saw what was happening and she was monitored during so I know that slumping to her lap is safe for her (as bad as that sounds!). I kept saying it says in the IEP, only when sick so finally last week, I just took the chest harness off completely, lol! If it isn't there, they don't need to worry about it. I then had to look it up in the IEP and repeat that it is in there, only when sick. Today bus driver finally believed me. I hope. <sigh> Right now I am just missing the familiarity of the elementary school. I hate having to feel b**chy correcting all the new people in her life. Little things like the diapers not being on good enough. I am shocked it didn't leak tonight as when I got her undressed after supper, it was bunched up in her lady bits. Not completely their fault as her leg is screwed up so one has to make sure the diaper is properly in place since if she turns the leg during diapering it will bunch up weird down below and could leak around the diaper. I just feel weird telling someone how to put on a diaper, like they will be offended?? Last week she pooped in the afternoon and it wasn't tight enough so it shot up the back (she was sitting in her wheelchair after getting home from school). I didn't know so when I went to change her, what went up the back, then went on the carpet! Thankfully, I found an old bottle of resolve in the closet as I was all out of the good woolite carpet cleaner stuff I normally buy. There has been some other little things too, just seems like one thing after another though.

    Anyway, new piano lessons are going well...though we had drama there last week-our very first day with new teacher. Brandon got on the bus when I was supposed to pick them up! Good thing he knows how to open the garage by himself to get in. Tyler ended up getting 2 lessons last week! They also are doing swim lessons, and Caitlin starts her swimming this week too! She does it through the school, they bus her CD class to the local Y once a week, same one the boys go to for their lessons. I have my doctor apt next week so I am going to try out Donna's form to get my thoughts organized. Want to make the most of my 15 minutes, lol! Well, it's midnight, time to get some sleep....early PT for C tomorrow. I think 'hot lunch friday' is going to be 'hot lunch tuesday' since I don't feel like washing up all the little containers for their lunches!

    Lisa O.
    Lisa O: mom to Caitlin (14-CP, VA shunt, seizures), Brandon (12), Tyler (10), Logan (7)...my babies are all getting so old!!

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    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Lisa))))))

    Okay, dear friend ~ Here's my Pep Talk!

    Ensuring that Caitlin is safe and properly cared for is not being b!*chy at all!

    The school staff shouldn't be offended by you instructing them on the proper way to place Caitlin's diaper. If they don't put her diaper on correctly, Caitlin suffers, (diaper in her lady bits ~ OUCH!) and you are left with clean up and laundry.

    You can certainly approach the teacher/aide(s) nicely and say, "I realize that it can be a challenge to put on Caitlin's diaper. She's had a few accidents, and I just want to prevent any more. I'd like to demonstrate to you how to diaper Caitlin, so that she's comfortable and doesn't have accidents." Then, take Caitlin to the school's changing room/bathroom and take off her diaper and put a clean one on her in their presence. If you have little techniques or hints for them, share those.

    Their purpose is to serve your child. They aren't doing that if they are haphazardly slapping a diaper on her rear and calling it done. They should not be offended by your desire to want Caitlin to be clean and comfortable, and they should appreciate that you took the time to show them the right way to put on her diaper.

    Diapering an infant is straight-forward. Diapering a teen/adult is a whole 'nother ball game. And each person is an individual, whose body parts move in different ways, so it's reasonable to think that not everyone would recognize the best way to put a diaper on a teen/adult.

    If you were paying a sitter to care for Caitlin, would you instruct that sitter on how to put on Caitlin's diaper? If the sitter didn't do it properly, would you continue to hire that sitter?

    Those other "little things" may add up eventually to be a "Big Thing." I'd nip it all in the bud, were I in your shoes.

    Perhaps you should call for an IEP meeting, wherein you state, "I realize it's all new to you and to us, and for that reason, I'd like to share with you some things that I'd like to clarify, address, resolve (choose a word ) to enhance Caitlin's educational experience and to meet her needs appropriately while she attends here. I appreciate your efforts on my daughter's behalf, and I feel these things are important to ensuring her needs are fully met, while she is in your care."

    Have a list of your issues/concerns, with your suggestions for remedy, and hand it out to everyone attending the IEP. Go over each item and get feedback from the rest of the IEP team members.

    Remember: YOU are the IEP Team Leader. You are the Boss. These folks essentially work for you in their educating and caring for your children.

    The focus is what Caitlin needs, and if those needs aren't being met, then changes must be made. That's the law.

    You aren't being b**chy or offensive, when you expect appropriate care for Caitlin, which is her legal and civil right. You are being Caitlin's advocate.

    You want b**chy? I was ready to file a Civil Rights complaint against our county and school district, because of Michael's ridiculous pick up and drop off times, and his length of time on the bus. B**chy landed me a spouse!

    The reasons for his times and long ride? His disabling condition, requiring a w/c bus, our distance from the only county program in our area (like that was our fault, and Michael should be punished?), and the cost of an additional bus run to accommodate his needs. That's discrimination.

    In my opinion, the school/district is discriminating against Caitlin for the same reasons: w/c accessibility, location of her residence, and $$ for additional runs a.m. and p.m.

    Transportation is a Related Service in the IDEA, and the IEP.

    Caitlin's current transportation schedule is not meeting her individual needs. She's missing breakfast, being rushed through her morning routine to meet a bus, which pretty soon, will be arriving at sunrise. She's on the bus so long that she floods her diaper and develops a skin breakdown, not to mention how long she is slumped over, while the bus goes over potholes, railroad tracks, and makes turns, all of which is jostling her about. At a delivery time of 4:30 to 4:40, Caitlin will end up arriving home near sunset. Sunrise to Sunset? What other children, besides Caitlin, are being transported at these times and for this length of time?

    You have every right to put your foot down, Lisa, and that's not being b**chy. That's advocating.

    It's just wrong that Caitlin has to go through all of this just to attend school. And after a long day of school, I'm sure that she, like all kids (and adults) would love to just come home and relax. But she's on a bus for over an hour. Stopping and going for all of the other kids taken home before her.

    You can address this in Caitlin's IEP, specifying that she will be picked up at X time and returned home at X time, with an X amount of time on the bus.

    They are counting on you to just go with the flow and be okay with it. They're counting on you not to make waves.

    In my experience, the world was different, when my boys transitioned from elementary school to high school age and then adults. The older our children get, the less they get, and the harder you have to work for them to get it. Whatever "it" may be.

    You need to let them know what isn't acceptable, and they need to do whatever is necessary to make it acceptable.

    And, while this isn't really about you, per se, it is about you, as Caitlin's caregiver, her Mom, and your sons' Mom. You need to be at top form to handle all of your children's needs, and if you are being wrung dry, before you've had a sip of coffee at 7 a.m., then things need to change. You and Caitlin are going to wear out at this pace. So, your needs also should be considered, although legally, your needs have no standing in the IEP process.

    When I finally had enough of waking, bathing, dressing, giving meds and feeding Michael in the dark to meet a bus to take him to school, where he'd likely sleep from exhaustion, I made a big noise and things changed for Michael. All that hustle and bustle in the morning isn't healthy. It's stressful.

    So, there's my Pep Talk, Lisa! I know it's unpleasant, and there's always that intimidation and fear that we'll be perceived as pushy and demanding. Well, one day I decided that I wasn't going to be intimidated, and if I had to be viewed as pushy and demanding to get what my boys needed, then so be it.

    But, I doubt that you will be perceived that way. It's very reasonable for you to express these concerns and ask for resolutions now.

    I'm rooting for you!

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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    Yup, what Rose said!!!!! Gotta run, but I read your letter late last night, Lisa and I wholeheartedly agree with all Rose's suggestions. You are NOT being too demanding - so many elements of this are NOT in Caitlin's interests, nor your's nor your family's. Their practices with the bus timing and with Caitlin's physical are HARMFUL. You must nip this in the bud. If Caitlin gets an infected pressure sore from being improperly changed, that will be just terrible. Perhaps you could also bolster your argument with a doctor's letter. What the school is doing is NOT OK!!! Good luck my dear friend xoxo Go get 'em!
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


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    Lisa, Rose gave a great pep talk! I hope it helps you feel better about your advocacy voice. That's all it is, If someone sees it as b**chy they just don't get it and never will most likely. Who cares if someone like this doesn't "like" you. The others who do get it will see it as advocacy. I hope it gets straightened out for her quickly. It's just so ridiculous. I've seen it happen to so many kids, unfortunately some don't have a voice speaking up for them. The bus ride should not be that long for anyone! I've made some great friends along the way through our ups and downs with school and I've had some who thought I was just B**chy. I was never a confrontational person in fact avoided confrontations and was very quiet. I found my voice when it came to my kids. I've had to give instructions to others but have always done it with great care and a "just in case you didn't know" attitude. Good luck... Your just being a great mom!
    Mary Grace

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    Distinguished Community Member andromeda31's Avatar
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    Thanks everyone!

    I have good news to report...came home this afternoon and checked the answering machine...a message from the director! They will be having a school handicap van from the high school come pick her up at 7:45am...starting tomorrow! She will still have to ride the bus home. I am fine with that. I pick her up after school 2x/wk so really that is only 3x/wk to ride home and having that nice later pickup time will make the long ride home ok. I was always ok with it being long one way or the other, just wanted it to be fair. We will always have after school things a few times a week anyway so really riding a few days a week will not worry me. I am thrilled that she is going to be able to sleep in for a few days a week! We still have early apts 2-3x/wk but sadly, we were leaving later for those appts (6:45 leaving time) than when the bus was coming at 6:30! With the van coming at 7:45, she can sleep in until 6:30 instead of being shoved out the door! He also sent the news to me in an email which was good since our machine cut him off short. Thinking ahead, I did ask in my email reply to him if they planned to continue this solution next year? He did reply back that he wasn't sure and could not promise that so far ahead. I do hope to pursue to our school board that they adopt a policy similar to that other local district that SN kids only ride 45 min max. That would solve all these problems! I mean would it really add THAT much to the tax base to add a few extra busses? Oh well! I am placated for now! One other solution I had in mind if they didn't offer anything palatable to us was that our neighbor drives for Abby Vans (handicap vans) and I was going to suggest that the school contract with Abby Vans to provide a ride for C, but the school van will work good too. :)

    I still haven't brought up the diaper issue, but I will gather up my courage and say it Friday when I bring her to school. I checked her when she came home yesterday and it was really loose and also bunched to the side of her bottom. I fixed it and it was good, and it was still dry at least too. But yes, I do hate dealing with extra laundry....I have enough extra with Logan still having nighttime accidents. (he does good if we wake him up at midnight to pee but I've been going to bed earlier lately). That's a whole different can of worms though! :) My day has sure been made 100% better getting the good news about the van pickup!

    Lisa O.
    Lisa O: mom to Caitlin (14-CP, VA shunt, seizures), Brandon (12), Tyler (10), Logan (7)...my babies are all getting so old!!

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    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    Thumbs up Pep Talk #2

    ((((((Lisa))))))

    Your email to the Special Ed Director was the key to the new pick up time for Caitlin. You weren't b**chy or demanding in your email. But, they know you weren't happy with the situation, that you were aware of the policy in the other district, and that you weren't letting it drop. That's advocating, sweetie, and you done good!

    As for his response that he can't promise anything for next year ... Malarkey!!!

    Half way through this year, they'll be planning next year's budget. Caitlin will still have the same needs then as she does now, so when they plan their budget, they will have to factor in her transportation needs. And so on through high school.

    When would it ever be appropriate for Caitlin to be picked up at 6:30 a.m.? Never!

    The IEP is your avenue to ensuring that Caitlin's pickup time is never 6:30 a.m. again. If it's stipulated in her IEP, you have legal recourse if they try to mess with you next year, or the year after that, etc.

    Specify it as, "Caitlin will be picked up by a w/c accessible van or bus, no earlier than 7:45 a.m. The duration of her bus time will not exceed X minutes."

    And every year, when you convene her IEP for the new school year, that stipulation will be carried forward to the new IEP. You insist on it, and refuse to sign the IEP unless it is included. Or, if they still offer a signature line of "I agree with this IEP, with the exception of ..." you can indicate there that the other members of the team refused to include the transportation goal. This gives you leverage.

    I hope you don't need leverage, of course, but unless the world has changed really drastically in the past 20 years, school districts will try to hedge anything to avoid providing services. Every time I heard, "budget cuts, we can't afford it," I just reiterated the law verbatim (can't remember it now ) indicating that that was an illegal reason to deny services based upon assessed need. And, guess what? There isn't an argument to that one! They just mumbled and realized that they HAD to do whatever it was that my son needed them to do for him.

    The IEP is a protection document for our children, and it needs to be implemented in that way to be effective in guaranteeing our children's legal and civil rights.

    This is your training ground for the future, Lisa, because as our children age, less is available to them and more is required of us to make sure that they get what they need.

    Definitely go to the school board and convince them to adopt the same policy as the other district. You have plenty of ammunition. "If that district can do this, why can't our district do this?" And, if the answer is, budgetary constraints, you can set them right on that one.

    It sounds to me like the people, who are in charge of diapering Caitlin, need a hands-on course from you. Don't worry or fret about their reaction, or apologize for offering to demonstrate the correct way to put on her diaper. They clearly are clueless. And this is uncomfortable for your girl, and they need to do it properly, so that she is comfortable. Maybe they don't realize that the diaper is creeping up on Caitlin. I'm sure that they wouldn't want a diaper in their lady bits or up their rear end.

    Jon's life skills teacher once remarked that people regarded me as either a saint or a b**ch. I think I've shared that here at CN before. And you know what? I am.

    But I don't turn into a Tiger Mama until I'm pushed to the limit.

    The best way to avert the limit is to stop it before it reaches that point. And that's why I'm promoting the IEP for Caitlin.

    And that's Pep Talk #2!

    You're doing a fantastic job and you are a terrific mom! I'm in awe of all that you accomplish in one day! I know that it's more on your plate, but once you have the issues resolved, it is that much less on your plate.

    In your corner, rooting for you, wearing the jersey with your name on the back!

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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    Distinguished Community Member andromeda31's Avatar
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    Hi!

    Another morning post from me....I usually write here late at night so it feels sort of weird! Today was the first van pickup....it went really good! The only bad was the *******ial downpour that let loose 5 min before the van was due to arrive. She pulled in just as it let up (and said she had waited to see if it was going to stop, which it did). Our power even flickered off twice it was that bad! The boys have picture day today so I am hoping they didn't have to walk through that when they got to school. :( I had gel in Logy's hair and I don't think it would make it through that rain. Oh well! The van is really really nice! The only weird thing is for the lift that raises her in...on the bus, I would put her on the lift and while the driver presses the button, I would climb onto the bus and be at the top when the lift got to the top and I would put her into the wheelchair spot so the driver could close the door right away (this works really nice in our cold winters!!). The van doesn't have a separate entrance like the bus does though so it felt really weird for me to just stand there and watch the driver do her thing. She rode up the ramp with Caitlin and then set all the wheel locks and seat belts. They trained her on it just yesterday so I am sure we will get a faster routine down before the cold winter comes! I loved letting Caitlin sleep in until 6:30 today! Though when I went in at 6:30, she was already awake! I think the boys were rather noisy this morning though. I know she will get used to the later waking up time quickly! :) It was nice to send all the kids off and have a few hrs alone at home. I just finished canning 12 jars of tomatoes so I feel pretty productive today! Off to bodyflow class and picking up a papa murphy's pizza for supper. It is crazy busy piano/swim night, plus I have to go to a meeting for the neighborhood watch that is getting set up in our 'hood and then a church council meeting. It has been one meeting after another this whole week!! I don't think I could pack much more into my days....

    Lisa O.

    ps, don't know why it blanked out 't-o-r-r-e-n-t-i-a-l' up above, but that is what it should say really! :)
    Last edited by andromeda31; 09-19-2013 at 06:43 AM.
    Lisa O: mom to Caitlin (14-CP, VA shunt, seizures), Brandon (12), Tyler (10), Logan (7)...my babies are all getting so old!!

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    Distinguished Community Member andromeda31's Avatar
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    Hi!

    Quick update! Caitlin had a chiro appt this morning so after that I bring her to school. I felt weird bringing it up, but I did mention the diapering to one of the aides. She was nice about it, so yay! I didn't want to leave it go on for a long time and then say something. I think that would be harder. I just talked about how her leg is screwed up from the surgeries and how that can cause the diaper to get bunched weird and I made it like, 'oh I don't want you to have the poop shoot up the back' (and have to clean that up, yuck!). Caitlin is totally wiped out tonight. I am still waiting to hear from her doctor regarding the lab results and maybe going up on the felbatol a bit. Brian is gone bow hunting this afternoon/evening so I took the kids to the library to get their last card stamp. They earned a free kid dish from Cold Stone Creamery (ice cream). They had to go to the library 4x by a certain date and read 5 books, easy for us, we are always going there! So after getting that, we went directly to Cold Stone and had dessert first tonight! Yum! Even though she was tired, she ate almost all her ice cream. Glad it is Saturday tomorrow and she can sleep in a little later. :) Have a good weekend everyone!

    Lisa O.
    Lisa O: mom to Caitlin (14-CP, VA shunt, seizures), Brandon (12), Tyler (10), Logan (7)...my babies are all getting so old!!

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    Some good news, that's great. Sounds like it's been busy busy busy. I hope you get a little rest over the weekend. What a nice treat for a Friday Dessert first!
    Mary Grace

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    ((((((Lisa))))))

    I'm glad that you mentioned Caitlin's diaper to an aide, and I hope that they will all be more careful in placing Caitlin's diapers from hereon.

    Hope also that the morning van works out well.

    All that "free time" you thought you might have once school started ... what happened to that?

    Let us know about Caitlin's lab results, when you get them.

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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