advice

[Guest guest]

Sorry for typos in my email. I was sending from my phone late at night,

and " swyping “ doesn't always work well. I tried swyping that my son

struggled with depression and it wrote " seeyousoon " . And then I didnt

realize that it sent only to the individual and not to the group so she was

going to forward it. Hopefully it went through.

Thanks

On Jan 21, 2012 9:31 PM, " cindy mccarthy " <cindylmccarthy@...> wrote:

> I am very unqualified to speak. My daughter with Ds is only 2. But I an

> a mom to 11. Two of my older non Ds children have struggled with diet

> related strong personality /behavior issues. I had no idea until they were

> older that it was at all food related. My oldest son benefited greatly

> from EFAs and vitamin B complex. he not only suffered from seeyousoon and

> anxiety but even saw things. he want horribly disobedient but struggled in

> other ways. With suuplements it is a night and day difference.

>

> One of my daughters has an issue with gluten. Looking back at her

> horrible behavior when she was younger I believe it was driven by this.

> bladder control, wild behavior, tantrums... Oh.. the stories I could tell.

>

> Both are great now. I have no idea if this would be helpful at all but

> figured it was worth mentioning.

>

>

> On Jan 21, 2012 3:01 PM, " B. " <bonniand@...> wrote:

>

>> **

>>

>>

>> Hi Jill,

>>

>> I feel sorry that you are going through all of this, I know it can be

>> exhausting, but I am sure some behavior problems will pass as Kit grows

>> older.

>>

>> My daughter Ana (19) used to pack things, too, including remote controls,

>> cell phones, whatever she felt putting in her bags. We went crazy looking

>> for things, because we did not know which bag to look for. Like you say,

>> probably she had a purpose, but not necessarily make sense to us. With

>> time she stopped doing that.

>>

>> Most of the time Ana is very nice and sweet to everybody, but there was a

>> time that she was very rude to my mother-in law ( a very difficult

>> situation ), luckily my MIL was clever enough to not pay attention to the

>> times Ana completely ignored her, even turning her head the other way. MIL

>> would speak to Ana if Ana wanted to talk to her, MIL would ignore her when

>> Ana ignore her. Thank God that is not happening anymore. I felt terribly

>> bad! Of course I addressed the situation and punish Ana by taking things

>> away.

>>

>> Perseveration is also a behavior that has improved, she still says Mom

>> repeatedly and keeps asking the same question over and over, but a little

>> less than before.

>>

>> She liked to take all her cloths from her closet, would try folding it

>> (her way) and put it back; so all my work arranging her room and closet was

>> for nothing.

>>

>> Ana was not so destructive, but she did make her brothers cry in many

>> occasions, when she destroyed toys or ruined some of their video games.

>> They were very tough on her, so she learned the hard way.

>>

>> Ana likes to set the table, and even before I or my husband start

>> preparing meals, she is already busy setting the table. She used to put a

>> lot of things, but now has learned which sauces (mayo, ketchup, etc.) will

>> be needed with the meal being prepared. She now knows if we are having

>> soup, she puts the spoons and the soup plates, etc.

>>

>> I think Ana does this to feel helpful, but before she did not know

>> exactly what has to be done; she just did it!

>>

>> I hope Kit's problems improve with time.

>>

>> Hugs,

>>

>> Bonnie (in Belgium)

>>

>> >________________________________

>> > De: Jill son <thrill@...>

>> >Para: ; denisemanly@...;

>> Down Syndrome Treatment

>> >CC: equinn@...

>> >Enviado: Sábado, 21 de enero, 2012 18:29:23

>> >Asunto: Advice

>> >

>> >

>> >

>> >I keep thinking things are getting better with Kit and then she does

>> something and makes me think she's not getting better. She has always been

>> my " wild child " --from almost as soon as she could walk. She has been

>> extremely active and constantly into everything. BTW, she is 10 years old

>> now. I took a year off from my job when she turned 5 so I could, hopefully,

>> work with her consistently to help with self-control, toileting issues and

>> behavior concerns (she is also very dominating, controlloing and often just

>> not nice (can be mean to family members and rude to her peers, so she would

>> be better prepared for school. K-2 grades were extremely difficult years at

>> school--she had many many accidents, and many difficult behaviors--often

>> ending up in detention and several times " emergency removed " from school.

>> The past two years have been MUCH better. At 5.5 after much thought and

>> talking to many people (possibly even many of you) we began to try

>> medication. Over a course of a

>> >bout 2-3 years and seeing several different specialists we tried about 8

>> different meds (some of them pretty potent things I typically wouldn't have

>> tried with such a young child) or combination of meds. I also sought help

>> from child psychologists and behavior specialists. Things have gotten

>> better--especially at school--I can only remember one time this year where

>> I've been called because of her behavior. For the past 2-3 years she has

>> been only on on one medication, Focalin XR. It does seem to help take the

>> edge off, but certainly isn't a total fix.

>> >Some of her behaviors include, non-stop chatter (which often seems

>> meaningless to me, but probably isn't to her) which is often loud, some

>> perseveration of words/questions hearing " mom " 44 times in 10 minutes

>> (that's an actual count) can be quite annoying, or " where going? " in the

>> car over and over when she knows exactly where we are going, she will

>> change her clothes 20 times a day or more (I've locked most rooms and she

>> only has a handful of clothes she is supposed to be allowed to change

>> into), hoarding/packing bag--she will take her suitcase, beach bags,

>> purses, etc...and just fill them with all kinds of things and then carry

>> them around (often we can't find remotes, batteries, mail, etc...because

>> she has them in one of her many bags), being bossy and demanding, when it's

>> time for lunch or something similar in her attempt to be helpful she will

>> pull everyhting out of refrigerator, or if I mention doing laundry in a day

>> or two she will immediately

>> run upstairs and brin

>> >g down any clothes she can find (clean or dirty), at restaurants she

>> continues to make a " room " around her eating place--putting the menu up,

>> lining her silverware, ketchup bottle, salt/pepper shakers, etc.. around

>> her plate area, destroying things (she will still write on walls, clothes,

>> tv's, etc..., tear/cut things up) often there is a purpose to this in her

>> mind, but it is still destructive.

>> >Today I am in tears because I'm just tired of it and am not sure what

>> else to do. It seems I have to constantly be with her and make sure she is

>> not in trouble. Maybe this is just going to be the way it is with her, but

>> it is exhausting. She was upstairs in her room this am (I just redid her

>> bedroom for her for xmas and she loves it) and I thought was playing nicely

>> or watching a video. When I went upstairs, her room was covered in

>> clothes--somehow she got in the room that is usually locked--and had all

>> the summer clothes and boxes of garage sale/Goodwill clothes all over her

>> bedroom. I had made her a cute corkboard and covered it with pictures of

>> her, family, friends, pets, etc... She loved to look at it and talk about

>> the pictures. Well she had taken ALL of the pictures off and the pictures

>> out of the three picture frames in her room and cut them into tiny pieces

>> (some with a purpose to put them in the picture section of a wallet she had

>> found).

>> Ugh.

>> >People often think Mac is so " high functioning " and " brighter " compared

>> to Kit. I don't necessarily believe that. She is very bright, but

>> unfortunately, often all people see (at times including me) are behaviors.

>> These things aren't constant all day long, but at least one or two of them

>> happens everyday--somedays, of course, are better/worse than others. She is

>> GREAT 1:1 (for the most part) and can be a happy, cooperative,

>> entertaining, loving,little girl in a group. I would just like to see that

>> side of her more often. Any words of wisdom from those of you have been

>> through this or continue to go through this.

>> >Thanks for listening/reading. I feel better just being able to share

>> this with all of you.

>> >

>> >Jill

>> >Mom to Mac (13, 8th grade, Ds) and Kit (10, 4th grade, Ds)

>> >

>> >

>> >

>> >

>> >

>> >

>>

>>

[Guest guest]

I had fun trying to figure out what " seeyousoon " was.

Eleanor

On Jan 22, 2012, at 8:43 AM, cindy mccarthy wrote:

> Sorry for typos in my email. I was sending from my phone late at night,

> and " swyping „ doesn't always work well. I tried swyping that my son

> struggled with depression and it wrote " seeyousoon " . And then I didnt

> realize that it sent only to the individual and not to the group so she was

> going to forward it. Hopefully it went through.

>

> Thanks

>

>

> On Jan 21, 2012 9:31 PM, " cindy mccarthy " <cindylmccarthy@...> wrote:

>

>> I am very unqualified to speak. My daughter with Ds is only 2. But I an

>> a mom to 11. Two of my older non Ds children have struggled with diet

>> related strong personality /behavior issues. I had no idea until they were

>> older that it was at all food related. My oldest son benefited greatly

>> from EFAs and vitamin B complex. he not only suffered from seeyousoon and

>> anxiety but even saw things. he want horribly disobedient but struggled in

>> other ways. With suuplements it is a night and day difference.

>>

>> One of my daughters has an issue with gluten. Looking back at her

>> horrible behavior when she was younger I believe it was driven by this.

>> bladder control, wild behavior, tantrums... Oh.. the stories I could tell.

>>

>> Both are great now. I have no idea if this would be helpful at all but

>> figured it was worth mentioning.

>>

>>

>> On Jan 21, 2012 3:01 PM, " B. " <bonniand@...> wrote:

>>

>>> **

>>>

>>>

>>> Hi Jill,

>>>

>>> I feel sorry that you are going through all of this, I know it can be

>>> exhausting, but I am sure some behavior problems will pass as Kit grows

>>> older.

>>>

>>> My daughter Ana (19) used to pack things, too, including remote controls,

>>> cell phones, whatever she felt putting in her bags. We went crazy looking

>>> for things, because we did not know which bag to look for. Like you say,

>>> probably she had a purpose, but not necessarily make sense to us. With

>>> time she stopped doing that.

>>>

>>> Most of the time Ana is very nice and sweet to everybody, but there was a

>>> time that she was very rude to my mother-in law ( a very difficult

>>> situation ), luckily my MIL was clever enough to not pay attention to the

>>> times Ana completely ignored her, even turning her head the other way. MIL

>>> would speak to Ana if Ana wanted to talk to her, MIL would ignore her when

>>> Ana ignore her. Thank God that is not happening anymore. I felt terribly

>>> bad! Of course I addressed the situation and punish Ana by taking things

>>> away.

>>>

>>> Perseveration is also a behavior that has improved, she still says Mom

>>> repeatedly and keeps asking the same question over and over, but a little

>>> less than before.

>>>

>>> She liked to take all her cloths from her closet, would try folding it

>>> (her way) and put it back; so all my work arranging her room and closet was

>>> for nothing.

>>>

>>> Ana was not so destructive, but she did make her brothers cry in many

>>> occasions, when she destroyed toys or ruined some of their video games.

>>> They were very tough on her, so she learned the hard way.

>>>

>>> Ana likes to set the table, and even before I or my husband start

>>> preparing meals, she is already busy setting the table. She used to put a

>>> lot of things, but now has learned which sauces (mayo, ketchup, etc.) will

>>> be needed with the meal being prepared. She now knows if we are having

>>> soup, she puts the spoons and the soup plates, etc.

>>>

>>> I think Ana does this to feel helpful, but before she did not know

>>> exactly what has to be done; she just did it!

>>>

>>> I hope Kit's problems improve with time.

>>>

>>> Hugs,

>>>

>>> Bonnie (in Belgium)

>>>

>>>> ________________________________

>>>> De: Jill son <thrill@...>

>>>> Para: ; denisemanly@...;

>>> Down Syndrome Treatment

>>>> CC: equinn@...

>>>> Enviado: Sábado, 21 de enero, 2012 18:29:23

>>>> Asunto: Advice

>>>>

>>>>

>>>>

>>>> I keep thinking things are getting better with Kit and then she does

>>> something and makes me think she's not getting better. She has always been

>>> my " wild child " --from almost as soon as she could walk. She has been

>>> extremely active and constantly into everything. BTW, she is 10 years old

>>> now. I took a year off from my job when she turned 5 so I could, hopefully,

>>> work with her consistently to help with self-control, toileting issues and

>>> behavior concerns (she is also very dominating, controlloing and often just

>>> not nice (can be mean to family members and rude to her peers, so she would

>>> be better prepared for school. K-2 grades were extremely difficult years at

>>> school--she had many many accidents, and many difficult behaviors--often

>>> ending up in detention and several times " emergency removed " from school.

>>> The past two years have been MUCH better. At 5.5 after much thought and

>>> talking to many people (possibly even many of you) we began to try

>>> medication. Over a course of a

>>>> bout 2-3 years and seeing several different specialists we tried about 8

>>> different meds (some of them pretty potent things I typically wouldn't have

>>> tried with such a young child) or combination of meds. I also sought help

>>> from child psychologists and behavior specialists. Things have gotten

>>> better--especially at school--I can only remember one time this year where

>>> I've been called because of her behavior. For the past 2-3 years she has

>>> been only on on one medication, Focalin XR. It does seem to help take the

>>> edge off, but certainly isn't a total fix.

>>>> Some of her behaviors include, non-stop chatter (which often seems

>>> meaningless to me, but probably isn't to her) which is often loud, some

>>> perseveration of words/questions hearing " mom " 44 times in 10 minutes

>>> (that's an actual count) can be quite annoying, or " where going? " in the

>>> car over and over when she knows exactly where we are going, she will

>>> change her clothes 20 times a day or more (I've locked most rooms and she

>>> only has a handful of clothes she is supposed to be allowed to change

>>> into), hoarding/packing bag--she will take her suitcase, beach bags,

>>> purses, etc...and just fill them with all kinds of things and then carry

>>> them around (often we can't find remotes, batteries, mail, etc...because

>>> she has them in one of her many bags), being bossy and demanding, when it's

>>> time for lunch or something similar in her attempt to be helpful she will

>>> pull everyhting out of refrigerator, or if I mention doing laundry in a day

>>> or two she will immediately

>>> run upstairs and brin

>>>> g down any clothes she can find (clean or dirty), at restaurants she

>>> continues to make a " room " around her eating place--putting the menu up,

>>> lining her silverware, ketchup bottle, salt/pepper shakers, etc.. around

>>> her plate area, destroying things (she will still write on walls, clothes,

>>> tv's, etc..., tear/cut things up) often there is a purpose to this in her

>>> mind, but it is still destructive.

>>>> Today I am in tears because I'm just tired of it and am not sure what

>>> else to do. It seems I have to constantly be with her and make sure she is

>>> not in trouble. Maybe this is just going to be the way it is with her, but

>>> it is exhausting. She was upstairs in her room this am (I just redid her

>>> bedroom for her for xmas and she loves it) and I thought was playing nicely

>>> or watching a video. When I went upstairs, her room was covered in

>>> clothes--somehow she got in the room that is usually locked--and had all

>>> the summer clothes and boxes of garage sale/Goodwill clothes all over her

>>> bedroom. I had made her a cute corkboard and covered it with pictures of

>>> her, family, friends, pets, etc... She loved to look at it and talk about

>>> the pictures. Well she had taken ALL of the pictures off and the pictures

>>> out of the three picture frames in her room and cut them into tiny pieces

>>> (some with a purpose to put them in the picture section of a wallet she had

>>> found).

>>> Ugh.

>>>> People often think Mac is so " high functioning " and " brighter " compared

>>> to Kit. I don't necessarily believe that. She is very bright, but

>>> unfortunately, often all people see (at times including me) are behaviors.

>>> These things aren't constant all day long, but at least one or two of them

>>> happens everyday--somedays, of course, are better/worse than others. She is

>>> GREAT 1:1 (for the most part) and can be a happy, cooperative,

>>> entertaining, loving,little girl in a group. I would just like to see that

>>> side of her more often. Any words of wisdom from those of you have been

>>> through this or continue to go through this.

>>>> Thanks for listening/reading. I feel better just being able to share

>>> this with all of you.

>>>>

>>>> Jill

>>>> Mom to Mac (13, 8th grade, Ds) and Kit (10, 4th grade, Ds)

>>>>

>>>>

>>>>

>>>>

>>>>

>>>>

>>>

>>>

[Guest guest]

Jill,

She sounds so much like my Logan, 9. I must constantly be on the watch with

him and even then I am sometimes not fast enough. He is burning his aides out

faster than they come in.

I am working with the school on being positive, ignoring as much negative as

possible. I am also doing social stories as events come up. They seem to

help.. I don't know if it's because Logan is getting something out of them or if

the staff is getting something out of them.

My fight now is to get them to have academics ALL the time. I have the school

in a tizzy because I asked for subjects ahead of time so I can do modifications.

For example.. he sits there while the class is reading from the government

chapter.. and to me it is TIME WASTED. He should have the key words that the

kids read aloud on flash cards and match them as they are said. He's not going

to get the branches of government but he can match and his brain can be engaged.

ugh.

Sorry.. don't mean to vent when we are talking about Kit.. good luck.

[Guest guest]

hi.can we do research based jobs without exams.what else are our options.GOOD LUCK TO EVERYONE SITTING EXAMS.