Re: At my wit's end

November 18, 2004

In a message dated 11/18/2004 11:42:19 AM Eastern Standard Time,

careshabearz@... writes:

I ask that you please pray for the health

of my family and that I retain what sanity I have left.

Care, I'm sorry you are dealing with all this. I know personally what it is

like. It isn't easy by any means. I am praying for you and your family.

Janet, mom to Brittany, CVID, age 13

November 19, 2004

I will pray for you and your family Care. I know sometimes we have to question

God and wonder when enough is enough. Keep your heart strong.

Amy (mom to Bradley 2 1/2 IGA Def, and 6 1/2)

At my wit's end

As I am sitting here writing this I am having to remain calm as all I

really want to do is get dressed and leave, for good. Dealing with

Davin's illness after illness I can almost handle. But I have hit my

limit. Last week Davin did ok health wise(I was happy for just that

week that he have no ailments) and thursday my oldest had tonsils

adenoids out and tubes in. She ended up in the hospital from monday

night until yesterday. This was monday after I spent 4 1/2 hours at

the immunologist for myself. Davin's exam on monday was perfect, no

wheezing, no sinus or bronchial infection. I had almost 3 hours of

allergy testing which I had a reaction to severely and had difficulty

breathing. I am now having to take allergy shots 3 x a week,

claritan, nasonex, ceftin(because I also have a sinus infection),

albuterol for my asthma. We left hutchinson at 5:30 on monday and got

home at 7:30. I then had to turn around at 8 and take my daughter to

ER. Yesterday when she was released from the hospital I went to pick

up Davin and his 3 year old brother from my friend's house and he was

coughing and really rattly in his chest. I remained calm, gave

breathing treatments and his normal meds(pulmicort, albuterol,

singulair, zyrtec, ceftin(profolactic abx)) this a.m. he slept until

almost 9:45. That is late for him. I took his temp and it was 99.9

but just about 10 minutes ago it was 101.7. I know that God never

gives us more than we can handle, but I want to just run sometimes and

today is one of those days. I ask that you please pray for the health

of my family and that I retain what sanity I have left.

Care

This forum is open to parents and caregivers of children diagnosed with a

Primary Immune Deficiency. Opinions or medical advice stated here are the sole

responsibility of the poster and should not be taken as professional advice.

To unsubscribe -unsubscribegroups (DOT)

To search group archives go to: /messages

June 19, 2009

Liza can you contact your CI center for help? Ruth

From: [mailto: ] On Behalf Of

lkozlik@...

Sent: Friday, June 19, 2009 12:02 PM

Subject: At My Wit's End

I've had it with my rechargeable batteries. One of the batteries will not hold a

charge despite being in the charger all night. After placing it in the charger

yesterday evening and inserting it into my right processor this morning, my

processor would not turn on. I'm beyond frustrated at the moment and have

decided not to wear my CIs. I have my 3Gs, but don't feel like developing a

headache listening to Darth Vader all day long. I don't know what is taking so

long in returning my battery cage (I'm guessing it has to do with Medicaid), but

I'm to the point where I just want to send my right processor back to Cochlear

and be done with it. Does anyone know if Cochlear could send me a refurbished

processor in 24 hours? I really don't want to use my 3Gs if I can help it. If

that's the only choice I have, I won't wear my CIs at all because I'm extremely

irritable and being unable to hear clearly will only irritate me more.

June 19, 2009

Ruth,

I e-mailed my audi, explained the situation and asked if I could borrow a

Freedom from my CI center. I'm still waiting for a rely, but I sent the e-mail

about 10 minutes ago.

June 19, 2009

,

I had problems with the battery charger not charging the batteries. I had

to replace the battery charger three times in year, so you might be

experiencing a problem with the battery charger? The battery charger did

display the green blinking light to indicate it was charging, but it was

blinking in an inconsistent pattern and not the consistent blinking light

that should occur. Sometimes, it would begin to blink consistently, and

then the green blinking pattern would change - so that is a sign the battery

charger is not working properly.

Sheila

I've had it with my rechargeable batteries. One of the batteries will not

hold a charge despite being in the charger all night. After placing it in

the charger yesterday evening and inserting it into my right processor this

morning, my processor would not turn on.

--

DRINK MORE COFFEE

Do Stupid Things Faster With More Energy

June 19, 2009

Sheila,

Now that you mention it, my sister told me last week that one of the lights on

the charger was solidly lit, but then started to blink again. I don't know if

the problem I'm having is due to the battery or the charger. I suspect it may be

both. My audi has ordered new rechargables from Cochlear and I am waiting to

receive approval from Medicaid which will take several weeks.

I'm going to call Cochlear right now and will let you know what I find out.

June 19, 2009

,

Did you ever take the charger and batteries to your audi?

*---* *---* *---* *---* *---*

Law of Mechanical Repair: After your hands become coated with

grease, your nose will begin to itch or you'll have to pee.

& Dreamer Doll ke7nwn

E-mail-

rclark0276@...

Home Page-

http://webpages.charter.net/dog_guide/

June 19, 2009

Hi everyone,

I just called Cochlear via relay and was told they will send me a new cable

coil. They suspect that the cable coil isn't making a strong connection to the

internal implant. They also suggested that I bring my battery and charger to my

audi appt next week so she can determine if there is a problem with the charger.

I was told that the rechargeable batteries have a shelf life of one year and

mine are 2 years old. I should receive the cable coil on Monday. I'm happy now

because I won't have to go very long without hearing. I've decided to wear my

Freedom in my left ear and my 3G turned down low in my right ear so I at least

have some bilateral sound. By the way, the person I spoke to was very nice and

patient. As I said, I called using relay because I can't understand speech very

well with my left CI yet she spent all of the time necessary to allow me to ask

questions and receive clarification.

January 11, 2011

So sorry that you are having such a rough time with the school! We have the same situation at my son's school with any writing assignment. It's terrible at home! Meltdowns, anxiety, etc. He doesn't know what to write. He's looking for the 'perfect' or 'correct' answer when they are asking his opinion. The school told us the same thing! He's perfectly fine at school, so if he starts struggling at home with the homework, tell him to stop working on it and send it to school and he can work on it there. We are just starting this. Can't wait to see how this turns out. They must think they can wave a magic wand.

Just because our children do not show it at school, does not mean that they aren't anxious or struggling! Aspie's typically don't show it except at home where they are most comfortable.

January 11, 2011

Hmm , thats interesting , so the teacher told her to do her work at home with no help? How did that turn out when she went to school the next day , did she do ok on the homework with no help? I guess if the teacher said to try not to help her with it , i would do that , and if erin got to frustrated and couldnt complete it , i would take that into her teacher and say , this is what happened with no help at home! Maybe then the teacher will get it , that your not over exaggerating the help she needs at home and the frustrations she is having, and will take you serious , and hopefully suggest ways to help her at home! Its kind of weird ive never heard of a teacher saying to a student , to do your homework at home with no help!Further more , if she is clearly not getting it at

home , but the teacher says she is doing " wonderful at school" then my personal thought would be that the teacher is probably not doing a verygood job at "TEACHING" and is just doing the work for her , so she can just get her through it and not address the very real problems she is obviously having! Well let us know what happens , i feel for ya , i had a pretty hard time in school and i know how frustrating as student it can be, but it sounds like your a great mother , with me i remember my mom always staying positive and trying to motivate me , i always went to her for help , my dad on the other hand , lol well if i asked him a question he would say " well werent you in class today , you should have learned this already" he wasnt very motivating at all , but god bless his soul anyway!! lol :)MeaghanFrom: Hall Melinda <mlndhall@...>support group <Aspergers Treatment >Sent: Tue, January 11, 2011 11:08:12 AMSubject: ( ) At my wit's end

It's been awhile since I've posted. We are in the middle of trying to get a formal diagnosis with our daughter, . She just turned 10 in Dec. I've been dealing with a lot of issues since she was 18 months old. She's been in speech therapy since she was 22 months. She was just found eligible for further services under SLD, yet the school has no specific learning disability.

She appears to have some major auditory processing issues and may be dyslexic as well. The psych we are seeing currently suspects some sort of PDD as well. She also has OCD issues that are mild to severe.

She had the evaluation done by the school and the person who did the evaluation for the educational part had a two-page list of "suggestions" for her. All mainly comprehension and reading issues. A lot of auditory suggestions. So comprehension is a huge issue. The psychologist mainly found she has short term memory issues. He didn't see it as significant, but hey, short term memory issue is a HUGE issue.

So far this year, the teacher hasn't been very supportive. She just thinks everything is going to be "okay". We've just had major struggles the past two weeks with her trying to learn how to divide one digit into 2 digits. She has struggled with it for 2 weeks. My 16 year old daughter (who has been in advanced math since 4th grade) tried to help her last night and found that she forgets to go back and get the remaining number in the original number. She brings the first number down and subtracts the difference and then will either use the same number again or make up a number. We decided that using a skeleton (picture with boxes where she'd have to fill in numbers) would be helpful as a visual. I emailed the teacher this morning to find out that she did fine with the two digit number with minimal help. And she said she did fine on her test, but only with the two-digit number, not the 3.

So here I am, saying that she has struggled and had great difficulty and the teacher says that at school, she does wonderful. The teacher emailed me back and said she told to do her work at home with NO HELP and she'd see what she did when she gets to school. I asked for a visual. Nothing was mentioned about it. The teacher said she didn't want ME having to struggle with her at home. I'm so confused at this point. is not one to "play" me with trying to get work done if she can't. One of her obssessions is to please and get everything right. So if she's not getting it at home, why is she getting it at school-supposedly? I don't know who to believe or what to think. I've been trying to do thing to see if is just yanking my chain here at home to get attention with helping with homework, but she's been really frustrated.

What do you think?

Thanks,

Melinda

January 15, 2011

Hi Melinda,

I am in your shoes with regard to division. Does she have multiplication down? My ds turned 11 yo in December so he is one year ahead of your . He has dyslexia, as I know we have discussed before. Anyway, watching him try to do division was an amazing thing. I just kept thinking, "What the heck?!?!?!" lol. We e-school my ds now because the local school was so unhelpful. So I get to see him work up close and personal every day. And I doubt the teacher realizes how much trouble he has at all because by the time he sees the final product, I have worked for a good hour or so with my ds on how to do it.

And division - so fun....not. I think it's all part of the dyslexia package for some of these kids. Short term memory delays are HUGE - who would say otherwise and not be considered brainless?!?!?! - and my ds has this problem as well. Memorizing anything becomes a huge ordeal and not a simple thing. This leads to a "he knew it yesterday" effect because he probably did get it yesterday when you showed it to him and then forgot. All my boys score really low in short term memory and I have dealt with these kinds of problems all the time.

I wish I would have pulled my ds out of school long ago because he is really behind in math and we are always scrambling now to both keep up with his class and try to go back and learn old things so he can get caught up there. It's such a mish mash. I am thinking of working with him over the summer with an online program so we can just start at square one and work our way up - see how far we can get. But we'll see. He won't particularly enjoy doing that. But that is how we worked on reading issues. I was so focused on his reading problems, I didn't see the math problems coming up the pike. And he was multiplying in Kindergarten - really smart with numbers. It was only when he had to write them down and memorize them all that problems began.

Anyway, to your question - I would let her do her math on her own. Then make a copy for your data and to send the teacher. Then work with her on how to do the problem as usual. Leaving her flounder around and getting farther behind does not really help her and just so the teacher can finally see the problem? I wouldn't do that. So I'd try to kill both birds with one stone on this. Give her 20 minutes to do her math, then copy that and help her do it the rest of the way, or correct what she is struggling with. Also, jot down what the problem was as well. Keep a lot of data for this so you can show the full scope of the problem.

For my ds's evaluation, I had him do a lot of things to see where he was at and how he worked on his own. I had him write his alphabet without a visual cue. disaster. I had him multiply, divide, etc. He has visual problems and will literally put the answer underneath, not on top and add instead of subtract, or subtract up the line instead of down, etc. He does a lot of things backwards that way. Just writing the problem down can be an adventure in itself. But I saved all the examples/samples and I used them at his evaluation/IEP. Instead of telling them he had this or that problem, I could pull out examples and say, "Look here, this is what happens..." etc. It helps.

Like you, I made a form for division and multiplication using boxes so that he has to keep everything lined up. But it still can present challenges. And the way we teach kids math these days is awful. They keep spiraling back and forth so before he has it down pat, which takes him longer than other kids, they are already off to another topic. I sometimes think I might do better to pull him out of e-school math and do it on my own. We just need our own pace right now. And this week -fractions. Oh the joy. lol...

One thing that helped with large number division was a process where you worked up as well as down --> It is called in the book, "division using repeated subtraction." However, I tried to find a good example online and there weren't any. Most of the places online use a grid and we don't use a grid. In ours, you didn't have to guess the "best" possible number to divide into but instead, you just guessed a number. Then subtracted like usual. Then if you did not get close enough, you did it again, putting the next number on top of the previous number - building up until you ran out of number. And we just built upwards as we went. In the end, you added up the numbers to get your answer. I think that probably is confusing as I just explained it. I wish they had an example so I could give you a link but it helped him do the math where he was totally lost before.

Now I found a different way to do long division --> http://www.doubledivision.org/

as soon as we hit division again, I am going to try this method and see how he does with it. To me, it seems much easier. Work a problem online to really get how it's done and you'll see it's really a good idea.

When we work on math on our own, we are using this person's stuff --> http://www.mathmammoth.com/

She just had the best way of learning multiplication that I saw and we are currently working on learning our mult. facts again, one bit at a time. He knows some of his multiplication but there are huge gaping holes in his knowledge and some things he learned incorrectly or backwards.

As for , I doubt she is actually doing better at school or fooling you at home. Again, it's the short term memory. You could no doubt do the problem right after teacher is showing you how but by the time you get home, you have no clue how it's done. even regular people have this effect happen sometimes - How many times were you in geometry class and could do the problem as you followed the teacher's example but once you got home, you threw the book at the wall in frustration? Happens to a lot of people but it happens a lot to kids with short term memory deficits. So I am sure she is not pretending for you, especially since you don't feel she is either. This is a real problem for these kids.

Roxanna

"I

predict future happiness for Americans if they can prevent the government from wasting the labors of the people under the pretense of taking care of them." - Jefferson

( ) At my wit's end

It's been awhile since I've posted. We are in the middle of trying to get a formal diagnosis with our daughter, . She just turned 10 in Dec. I've been dealing with a lot of issues since she was 18 months old. She's been in speech therapy since she was 22 months. She was just found eligible for further services under SLD, yet the school has no specific learning disability.

She appears to have some major auditory processing issues and may be dyslexic as well. The psych we are seeing currently suspects some sort of PDD as well. She also has OCD issues that are mild to severe.

She had the evaluation done by the school and the person who did the evaluation for the educational part had a two-page list of "suggestions" for her. All mainly comprehension and reading issues. A lot of auditory suggestions. So comprehension is a huge issue. The psychologist mainly found she has short term memory issues. He didn't see it as significant, but hey, short term memory issue is a HUGE issue.

So far this year, the teacher hasn't been very supportive. She just thinks everything is going to be "okay". We've just had major struggles the past two weeks with her trying to learn how to divide one digit into 2 digits. She has struggled with it for 2 weeks. My 16 year old daughter (who has been in advanced math since 4th grade) tried to help her last night and found that she forgets to go back and get the remaining number in the original number. She brings the first number down and subtracts the difference and then will either use the same number again or make up a number. We decided that using a skeleton (picture with boxes where she'd have to fill in numbers) would be helpful as a visual. I emailed the teacher this morning to find out that she did fine with the two digit number with minimal help. And she said she did fine on her test, but only with the two-digit number, not the 3.

So here I am, saying that she has struggled and had great difficulty and the teacher says that at school, she does wonderful. The teacher emailed me back and said she told to do her work at home with NO HELP and she'd see what she did when she gets to school. I asked for a visual. Nothing was mentioned about it. The teacher said she didn't want ME having to struggle with her at home. I'm so confused at this point. is not one to "play" me with trying to get work done if she can't. One of her obssessions is to please and get everything right. So if she's not getting it at home, why is she getting it at school-supposedly? I don't know who to believe or what to think. I've been trying to do thing to see if is just yanking my chain here at home to get attention with helping with homework, but she's been really frustrated.

What do you think?

Thanks,

Melinda

January 17, 2011

Wow, Melinda! This sounds like what I've dealt with when working on math with my

4th grade daughter. I noticed that she was having difficulty with math in 2nd,

3rd and 4th grades. In 2nd and 3rd grade, the teachers said she was doing fine.

At home, she was having meltdowns from the stress she experienced trying to

figure out the math problems. It was like her mind stressed out so much that she

couldn't think clearly and she 'blanked out' on what to do. In 4th grade, her

teacher has now said that she needs help in math--addition and the rest. The

only thing I could think of is that she might have copied others' papers to save

herself the embarrassment of being considered 'dumb' as some kids were calling

her this. Also, she once told me that she received help from kids who were

trying to help her out. The obvious problem with this is that she wasn't really

learning how, but just waiting for the answer...or she understood for awhile,

but after she finished the worksheet, she didn't retain it. I don't know. It's

sad that despite my concerns voiced at school, nothing was done until the last

months of her elementary school year. Take care! --Kari

>

> It's been awhile since I've posted. We are in the middle of trying to get a

formal diagnosis with our daughter, . She just turned 10 in Dec. I've been

dealing with a lot of issues since she was 18 months old. She's been in speech

therapy since she was 22 months. She was just found eligible for further

services under SLD, yet the school has no specific learning disability.

>

> She appears to have some major auditory processing issues and may be dyslexic

as well. The psych we are seeing currently suspects some sort of PDD as well.

She also has OCD issues that are mild to severe.

>

> She had the evaluation done by the school and the person who did the

evaluation for the educational part had a two-page list of " suggestions " for

her. All mainly comprehension and reading issues. A lot of auditory suggestions.

So comprehension is a huge issue. The psychologist mainly found she has short

term memory issues. He didn't see it as significant, but hey, short term memory

issue is a HUGE issue.

>

> So far this year, the teacher hasn't been very supportive. She just thinks

everything is going to be " okay " . We've just had major struggles the past two

weeks with her trying to learn how to divide one digit into 2 digits. She has

struggled with it for 2 weeks. My 16 year old daughter (who has been in advanced

math since 4th grade) tried to help her last night and found that she forgets to

go back and get the remaining number in the original number. She brings the

first number down and subtracts the difference and then will either use the same

number again or make up a number. We decided that using a skeleton (picture with

boxes where she'd have to fill in numbers) would be helpful as a visual. I

emailed the teacher this morning to find out that she did fine with the two

digit number with minimal help. And she said she did fine on her test, but only

with the two-digit number, not the 3.

>

> So here I am, saying that she has struggled and had great difficulty and the

teacher says that at school, she does wonderful. The teacher emailed me back and

said she told to do her work at home with NO HELP and she'd see what she

did when she gets to school. I asked for a visual. Nothing was mentioned about

it. The teacher said she didn't want ME having to struggle with her at home. I'm

so confused at this point. is not one to " play " me with trying to get work

done if she can't. One of her obssessions is to please and get everything right.

So if she's not getting it at home, why is she getting it at school-supposedly?

I don't know who to believe or what to think. I've been trying to do thing to

see if is just yanking my chain here at home to get attention with helping

with homework, but she's been really frustrated.

>

> What do you think?

>

> Thanks,

>

> Melinda

>

January 18, 2011

My daughter too has working memory issues. It is at a deficit

level on a IQ subtest score.

My daughter is in special needs school for learning issues,

and she is on a online program called Carnegie Math

that helps kids remember the carries etc. She loves it.

And she had a serious math anxiety. There is hope in other

words. Not sure your public school will get on board with it.

Your daughter needs a full neuropsychlogical evaluation.

Schools do not do adequate testing. Make sure you

find a good neuropsych and hopefully the person

will advocate at the school for you, by explaining the

results.

Is your child in any special needs classes. For reading

my daughter's school reads so slowly and carefully in

class understanding all the parts of a story and points

of view. All down in class.

Writing is an issue for my daughter too on subjects that

are not too much of an interest. Again it is all down

in school.

Pam