Re: Struggling with the basics

[Guest guest]

Are you with any agency & have hab providers & a supervisor to run a home

program? If she has no motivation with not having a wet

diaper/bed/underwear & poopy pants, it will be difficult but the goal is so

worthwhile to achieve for a better quality of life for everyone. If

distance for therapy is a problem, maybe an agency is willing to do video

consulting (not in this private matter) & maybe come out quarterly? Any

supervised home program would be better than nothing. Consistency or doing

it daily works better to embed. Can an OT do a sensory profile on her to

determine what kinds of sensory issues she may have?

Marie

> I recently joined the group and I'm in need of any advice anyone can give

> me. I'm a custodial step-mother to two girls on the spectrum; one has

> Asperger's, the other is autistic and has mental retardation. The youngest

> has been our biggest struggle.

>

> She's somewhere in the middle of the spectrum and she's 12, will be 13 in

> September. Since the day I met my husband, she has always had toileting

> issues. When we first met, she was urinating and defecating in them

> multiple times a day. We've worked very hard with her and she now does not

> pee in her pants except at night and we've only had maybe 5 times in the

> last year where she's pooped in her pants. However, we cannot seem to get

> across to her the need to properly wipe herself after she goes. We remind

> every time she goes to the bathroom, we've tried a picture chart, and while

> those things work for a while, she slides back into not wiping or washing

> her hands.

>

> She sees a targeted case manager through our local mental health agency

> and the case manager has talked with her and worked with her but it only

> lasts for so long before she's back to not using proper hygiene. Getting

> her teachers at school on board about this has been less than successful,

> too. She also still pees the bed at night. She's outgrown Pull-Ups and now

> we're putting her in adult-type pull-ups and using reusable bed chucks and

> waterproof mattress pads.

>

> We are really at our wits end in how to get her to catch on to the concept

> of cleaning herself and we're willing to try anything we can find. There

> are no autism therapy programs available to us without traveling a great

> distance.

>

> Thanks in advance!

>

>

>

> ------------------------------------

>

> The Power Pumper makes physical therapy fun! Plus, funding sources are

> available to provide a free Power Pumper to anyone who needs it.

> ------------------------

> http://www.powerpumper.com/friends/jrox.php?uid=bridalsh

> ------------------------

> Autism_in_Girls_and_Women-subscribe

> ------------------------

> Autism_in_Girls_and_Women-unsubscribe@...! Groups Links

>

>

>

>

--

Marie " I don't think the worst thing that could happen to me is having a

child with special needs. I think the worst thing would be to raise a child

who is cruel to people with special needs. " ~ Mickelson Butman

[Guest guest]

I really would not use the pull up s at night. it really sends a mixed message

that it's okay to go in your pants. We had to put puppy pads under the sheets at

night for 7 years. She was in pull ups for 4 years and then night time pads

under the sheet for another 3.5 years. As far as the not wiping properly my

daughte is almost 14 and still needs help . If she doesn't get help she will

play in the toilet. It is important though to not use the diapers anymore. They

can't distinguish that Why is it okay to pee my pants at night but not during

the day. It is hard to wash the sheets and we had to throw out the mattress but

no more P.M/ accidents anymore. My heart goes out to you. She should really be

checked for food allergies as well. Take care .   Jenn 

________________________________

To: Autism_in_Girls_and_Women

Sent: Wednesday, March 28, 2012 9:12 PM

Subject: Re: Struggling with the basics

 

Are you with any agency & have hab providers & a supervisor to run a home

program? If she has no motivation with not having a wet

diaper/bed/underwear & poopy pants, it will be difficult but the goal is so

worthwhile to achieve for a better quality of life for everyone. If

distance for therapy is a problem, maybe an agency is willing to do video

consulting (not in this private matter) & maybe come out quarterly? Any

supervised home program would be better than nothing. Consistency or doing

it daily works better to embed. Can an OT do a sensory profile on her to

determine what kinds of sensory issues she may have?

Marie

> I recently joined the group and I'm in need of any advice anyone can give

> me. I'm a custodial step-mother to two girls on the spectrum; one has

> Asperger's, the other is autistic and has mental retardation. The youngest

> has been our biggest struggle.

>

> She's somewhere in the middle of the spectrum and she's 12, will be 13 in

> September. Since the day I met my husband, she has always had toileting

> issues. When we first met, she was urinating and defecating in them

> multiple times a day. We've worked very hard with her and she now does not

> pee in her pants except at night and we've only had maybe 5 times in the

> last year where she's pooped in her pants. However, we cannot seem to get

> across to her the need to properly wipe herself after she goes. We remind

> every time she goes to the bathroom, we've tried a picture chart, and while

> those things work for a while, she slides back into not wiping or washing

> her hands.

>

> She sees a targeted case manager through our local mental health agency

> and the case manager has talked with her and worked with her but it only

> lasts for so long before she's back to not using proper hygiene. Getting

> her teachers at school on board about this has been less than successful,

> too. She also still pees the bed at night. She's outgrown Pull-Ups and now

> we're putting her in adult-type pull-ups and using reusable bed chucks and

> waterproof mattress pads.

>

> We are really at our wits end in how to get her to catch on to the concept

> of cleaning herself and we're willing to try anything we can find. There

> are no autism therapy programs available to us without traveling a great

> distance.

>

> Thanks in advance!

>

>

>

> ------------------------------------

>

> The Power Pumper makes physical therapy fun! Plus, funding sources are

> available to provide a free Power Pumper to anyone who needs it.

> ------------------------

> http://www.powerpumper.com/friends/jrox.php?uid=bridalsh

> ------------------------

> Autism_in_Girls_and_Women-subscribe

> ------------------------

> Autism_in_Girls_and_Women-unsubscribe@...! Groups Links

>

>

>

>

--

Marie " I don't think the worst thing that could happen to me is having a

child with special needs. I think the worst thing would be to raise a child

who is cruel to people with special needs. " ~ Mickelson Butman

[Guest guest]

Hi,

I haven't been on here for a really long time. I read people's posts every so

often, but I am so busy with life that I have not had much time, but I felt like

I should respond to yours today. Just so you know a bit about me, since it has

been forever since I have been on here, I live in Alaska, I have lived in many

states however, but moved to Alaska 4 years ago. I have 2 daughters on the

spectrum and one son on the spectrum. They are now all either considered

severely high functioning, or have lost their diagnosis (like my son). My oldest

daughter will be 11 this year and she used to be diagnosed with Mental

Retardation (with and I.Q. of 56). She is still my most impacted child, but has

come leaps and bounds from where she was. All of my older children are now potty

trained and have no accidents anymore, but my oldest was 7 when this happened

and it was a bunch of collective things I did, but they have helped many other

families that I have counceled

with. I will tell you more about that in a second.

Things are going so well with my children, that we had decided we wanted more

children. We tried and had no success for a long while, so we decided to do

foster care. We took in two girls, soon to be 10 and 11, they are birth sisters

and have high functioning Fedal Alcohol Syndrome. They were already toilet

trained thankfully, but were still struggling greatly in many areas. I have had

them for 2 years now and the adoption is finalizing this Friday (we are so

excited).

After agreeing to adopt my girls, I ended up pregnant a week later. God has a

way of doing things That son is not quite a year yet, but amazingly enough,

sometimes no matter what you do, God has a way of giving you more blessings, and

I am pregnant again. We are truly excited but now as you can see are very busy

and that is why I am rarely on here.

Now that I have told you a lot about me, before I give too much advice, I would

like to know a few things about your daughter. Has she gone through puberty yet?

What is her guesstimated age level mentally? Are you able to reason with her?

Negotiate? What type if any, of a diet do you have her on or following? What

types of foods will she, or does she eat? Does she take any supplements? Is she

on any medications? Does she take melatonin? I have reasons for all of the

things I am asking. I just don't want to waste your time or mine giving you

advice that you already know, or have tried, or doesn't pertain to you. I would

love to help you out as much as I can. But I find that I have been able to help

the most by knowing a lot about each situation, before I give many

recomendations. I usually write back and forth and ask questions two or three

times, before really giving too many recomendations, because I find each

situation is so personal.

I have written some books and the first was called No More Diaper for Girls. I

wrote it, for my daughter and after writing and illustrating the first half of

it, which is anotomically correct and step by step cartoon instructions

(including wiping and washing your hands) I found that it still wasn't working.

I could not communicate with my daughter, more than yes and no and basic demands

like food and such, that she could say by this point (age 7). I vividly remember

one day, where she had had very acidic, horrible smelling bowel movements about

5 times already in that day. I stuck her in the tub, because I was sick and

could not handle wiping her at that point. I tried to get her to wipe herself

and she was throwing the diaper wipes, poop covered and all at me, and saying

" ma ma's job, I baby " . I already had a 5 yr old in diapers at that time too, and

a 3 year old. I was not feeling very sane that day. I turned on the tub, got her

cleaned and then

started asking questions that she could respond with yes or no to. I asked, do

you feel like this? Is this why you don't want to get potty trained? I knew she

understood things, just didn't know how to express herself. So, I kept asking. I

asked until I understood that it wasn't about the smell, or the wiping, or any

of that (even though all of that bothered her greatly). I finally understood,

she did not want me to stop loving her, and thought that if she didn't need my

help anymore that I would not spend time with her anymore and would not love her

as much as the younger kids. She was feeling replaced and wanted to stay a baby.

When I wrote that section of the book and printed it out, it worked for my

daughter (along with some negotiating dollar store incentives and a homemade

sticker chart that I made to go with the book). It worked in 6 days! I had been

working at it for years. I then lent my home printed copy to a bunch of other

families with

autistic daughters, and in less than a week most of them (we are talking 9-15

yr old girls) were potty trained (they did use the sticker incentives and stuff

too though) within a week. I did not even try the book with my next daughter who

was five, because she had been holding bowel movements and had been hospitalised

for 10 days at one point due to sickness from holding her bowels. I had a bunch

of people recomend that I publish the book. I was helped by my sister to find

the names of publishers and then after calling 3 of them, a publisher picked up

my book and published it. The first edition was a board book and so it would not

be destroyed as easily, but the second edition was just released in Feb. But 4

years ago, when I got my first copy, my younger daughter, who was non-verbal at

the time picked up the book, looked at it and potty trained herself in 3 days.

I know it has not worked that well for everyone on here or everyone who has

bought it, but I know it has been a big help to many, and that I have recieved a

lot of feedback and letters telling me of miracles for their daughters with

special needs. The book is available at Amazon.com and Target.com, and

Noble.com and many other places. Just look up Esther and No More Diaper

for Girls, but the Board book may not be available anymore, since it was the

first edition. I do have some copies though if you would like to get one

directly from me. My webpage was esthersmithbooks.com, but they jacked up the

price of the webpage so much, I just cancelled it and am developing another one

(in all my spare time). I do also have the stickers and charts I could throw in

for free if you are interested, Amazon doesn't have that.

I have much more I could share with you, I have been through Sooooooooooooo much

in my life and have a disabled husband and have serious health issues myself,

but somehow, God gets us through everything and we remain fairly posative for

the most part. Don't get me wrong, we've had days of despair, but we seem to do

better when we keep a smile on our face and are thankful for the good. The No

More Diaper for Boys was just released for anyone with boys and is now available

too. I also have some fun books about Alaska for sale now. The newest one is

called The Alaska Sun Turns Silly in the Summer Time for anybody interested. It

is something I can do at home while taking care of everybody

Please let me know some more info about your daughter, so I can help. If you

would like to e-mail private or personal stuff you don't wish to share here, I

have had many people do that and am fine with that. My e-mail is

essieshell24@....

Talk to you more later. Good luck and don't forget to not only ask for help from

here, but from Above. It really has been what saved me, literally, not just

figuratively.

Esther (mom to 6.5 kids)

------------------------------

>I recently joined the group and I'm in need of any advice anyone can give me.

I'm a custodial step-mother to two girls on the spectrum; one has Asperger's,

the other is autistic and has mental retardation. The youngest has been our

biggest struggle.

>

>She's somewhere in the middle of the spectrum and she's 12, will be 13 in

September. Since the day I met my husband, she has always had toileting issues.

When we first met, she was urinating and defecating in them multiple times a

day. We've worked very hard with her and she now does not pee in her pants

except at night and we've only had maybe 5 times in the last year where she's

pooped in her pants. However, we cannot seem to get across to her the need to

properly wipe herself after she goes. We remind every time she goes to the

bathroom, we've tried a picture chart, and while those things work for a while,

she slides back into not wiping or washing her hands.

>

>She sees a targeted case manager through our local mental health agency and the

case manager has talked with her and worked with her but it only lasts for so

long before she's back to not using proper hygiene. Getting her teachers at

school on board about this has been less than successful, too. She also still

pees the bed at night. She's outgrown Pull-Ups and now we're putting her in

adult-type pull-ups and using reusable bed chucks and waterproof mattress pads.

>

>We are really at our wits end in how to get her to catch on to the concept of

cleaning herself and we're willing to try anything we can find. There are no

autism therapy programs available to us without traveling a great distance.

>

>Thanks in advance!

>

[Guest guest]

Thank you all for your replies. I'll do my best to try to answer all your

questions.

Mentally, she's estimated to be around 8 or so. Sometimes she shows more

maturity than that but at her worst, it's probably around that age range.

We do not have her on a specific diet. We're often lucky to afford the food we

do have; I changed careers last summer and took a huge pay cut. We're barely

able to make it on what we are right now. Plus, I'm the only one who seems to

properly monitor what she's eating and I'm rarely home in the evenings for meal

time due to my job. My husband gets home with barely enough time to put

something together for dinner and will not pay attention to what's being served

unless I hound him about it.

She's on risperidone for her behavior issues and it's been a great medication

for her. Unfortunately, she's gained 40 pounds in the last year, and while part

of it is due to puberty, we know that part of it is due to the medication. I've

been on my husband about this for quite some time but he won't listen to me and

it wasn't until the APRN who prescribes her medication told him that the weight

gain is getting to be too much and we might have to take her off the medication

that he finally listened, but he's still not good about monitoring her eating

habits. ly, I'm tired of being the only one policing this and am ready to

disengage from it until he finally gets on board completely.

We limit her fluid intake at night, especially after dinner-time. She's a very

sound sleeper so we wonder if she possibly doesn't recognize that she needs to

go because she's so deeply asleep. She's also on trazodone to help her sleep.

She has not started puberty yet, and that's yet another thing we are dreading

considering she's so lax in keeping herself clean after using the bathroom.

We're (or I should say I since I'm the one who's always trying to solutions to

her problems) exploring options on this front.

She's far from a picky eater. In fact, I wish the oldest was more like her in

regards to foods. She'll eat just about anything you put in front of her unless

it's spicy.

Our access to help and assistance is very limited. We live in a community of

1200 people and we have very little access to the type of help she really needs.

As far as we know home-based attendant care is not available to us as no program

exists in our county. We feel lucky to have access to targeted case management

for her behavior as it is.

[Guest guest]

You're in a very tough spot. Trying to fight risperidone's effects is difficult

even with an adult patient who's committed to controlling what she eats. We're

designed to eat when we have an appetite and food can be obtained, and

risperidone increases kids' appetites enough to induce an average weight gain of

1.5 pounds per week.

Your husband may be intimidated by her sincere hunger, or he may have tried

limiting what she is served only to find that she sneaks more food the instant

his back is turned. People with developmental disabilities that prevent them

from understanding why they should go hungry are extremely clever, passionate,

and persistent food thieves. A group home with 24-hour supervision can't always

stop them, just slow them down a bit. Even with your husband's enthusiastic and

energetic supervision, your daughter might still be gaining weight.

I think people still feel that weight gain isn't a " real " medication side effect

like tremors or nausea because it's theoretically preventable: just don't let

the patient eat too much. That's possible in lab rats, prisoners, and short-term

lab experiments. It's almost impossible in real life, long-term use.

1. Are you able to lock up all food in the house except at mealtimes?

2. Does your doctor know of any treatment to reduce appetite? Metformin can

sometimes help in adults where it's appropriate, but it may not be approved for

prepubescent girls.

I'm familiar with a few cases of this problem, but I have little to offer as a

solution.

Best wishes,

Dawn

From: Autism_in_Girls_and_Women

[mailto:Autism_in_Girls_and_Women ] On Behalf Of mstearns09

Sent: Thursday, March 29, 2012 8:49 AM

To: Autism_in_Girls_and_Women

Subject: Re: Struggling with the basics

Thank you all for your replies. I'll do my best to try to answer all your

questions.

Mentally, she's estimated to be around 8 or so. Sometimes she shows more

maturity than that but at her worst, it's probably around that age range.

We do not have her on a specific diet. We're often lucky to afford the food we

do have; I changed careers last summer and took a huge pay cut. We're barely

able to make it on what we are right now. Plus, I'm the only one who seems to

properly monitor what she's eating and I'm rarely home in the evenings for meal

time due to my job. My husband gets home with barely enough time to put

something together for dinner and will not pay attention to what's being served

unless I hound him about it.

She's on risperidone for her behavior issues and it's been a great medication

for her. Unfortunately, she's gained 40 pounds in the last year, and while part

of it is due to puberty, we know that part of it is due to the medication. I've

been on my husband about this for quite some time but he won't listen to me and

it wasn't until the APRN who prescribes her medication told him that the weight

gain is getting to be too much and we might have to take her off the medication

that he finally listened, but he's still not good about monitoring her eating

habits. ly, I'm tired of being the only one policing this and am ready to

disengage from it until he finally gets on board completely.

We limit her fluid intake at night, especially after dinner-time. She's a very

sound sleeper so we wonder if she possibly doesn't recognize that she needs to

go because she's so deeply asleep. She's also on trazodone to help her sleep.

She has not started puberty yet, and that's yet another thing we are dreading

considering she's so lax in keeping herself clean after using the bathroom.

We're (or I should say I since I'm the one who's always trying to solutions to

her problems) exploring options on this front.

She's far from a picky eater. In fact, I wish the oldest was more like her in

regards to foods. She'll eat just about anything you put in front of her unless

it's spicy.

Our access to help and assistance is very limited. We live in a community of

1200 people and we have very little access to the type of help she really needs.

As far as we know home-based attendant care is not available to us as no program

exists in our county. We feel lucky to have access to targeted case management

for her behavior as it is.

[Guest guest]

  I thoroughly empathize with your growing frustration and despair.   This

could be written about my 14 year old.  Your daughter  remains dry during the

day.  Congratulations to her and to you!    What a tremendous

accomplishment. 

 

 I imagine you use wet wipes.   Kleenex toilet wipes are lovely and soft and

require fewer swipes than ordinary T.P.  So even one " whack at the can "  may

be cleaner than what is now being achieved.  And I hate to tell you this, but

she is just likely going to need ongoing supervision till it is automatic for

her to wipe  3 or4 times before the routine is accomplished.  

 Here is a tip; Do set out the pieces of toilet paper in separate piles

equalling the number of times you want her to wipe.   Teach her to use them

all one at a time at each trip to the bathroom.  The separate piles

become  her visual cue to wipe more than once.  This is the habit you need

to build now since often our girls can't discriminate " clean " bums from not.

 Nor do they understand cause and effect well, dirty equals sore and raw.  

It is a vicious ciycle because the more it hurts the less they want to wipe.

  

  Disposable undies...just one of those things I've come to terms with after

many years of toilet training hoopla.   Now that she menstruates, I'm glad

she is used to wearing them because there has been so little  adjustment

required and it actually facilitates her independence during menses.  Her

fine motor skills are so poor  that  learning to pull the paper off  pads

and stick them accurately is be beyond her capacity.

   

   I know how much easier you want things to be.  Sometimes we  are

better to let go for a time and settle for what is for a time  as the best

possible outcome in the moment.    Really, are pull ups and night time

accidents the end of the world?  This  is the place i have come to but it has

taken a very long time.    Still some days, there are those copious 

tears.  They aren't bad either.   Blocked sinuses diminish that lingering

foul  odour long enough blow a nose on the sheet corner and  slam the

bedclothes into that priceless washer. 

 

Welcome to the group.  Glad to have you with us.   Jay, mom to Kezia

________________________________

To: " Autism_in_Girls_and_Women "

<Autism_in_Girls_and_Women >

Sent: Thursday, March 29, 2012 12:34:19 AM

Subject: Re: Struggling with the basics

 

I really would not use the pull up s at night. it really sends a mixed message

that it's okay to go in your pants. We had to put puppy pads under the sheets at

night for 7 years. She was in pull ups for 4 years and then night time pads

under the sheet for another 3.5 years. As far as the not wiping properly my

daughte is almost 14 and still needs help . If she doesn't get help she will

play in the toilet. It is important though to not use the diapers anymore. They

can't distinguish that Why is it okay to pee my pants at night but not during

the day. It is hard to wash the sheets and we had to throw out the mattress but

no more P.M/ accidents anymore. My heart goes out to you. She should really be

checked for food allergies as well. Take care .   Jenn 

________________________________

To: Autism_in_Girls_and_Women

Sent: Wednesday, March 28, 2012 9:12 PM

Subject: Re: Struggling with the basics

 

Are you with any agency & have hab providers & a supervisor to run a home

program? If she has no motivation with not having a wet

diaper/bed/underwear & poopy pants, it will be difficult but the goal is so

worthwhile to achieve for a better quality of life for everyone. If

distance for therapy is a problem, maybe an agency is willing to do video

consulting (not in this private matter) & maybe come out quarterly? Any

supervised home program would be better than nothing. Consistency or doing

it daily works better to embed. Can an OT do a sensory profile on her to

determine what kinds of sensory issues she may have?

Marie

> I recently joined the group and I'm in need of any advice anyone can give

> me. I'm a custodial step-mother to two girls on the spectrum; one has

> Asperger's, the other is autistic and has mental retardation. The youngest

> has been our biggest struggle.

>

> She's somewhere in the middle of the spectrum and she's 12, will be 13 in

> September. Since the day I met my husband, she has always had toileting

> issues. When we first met, she was urinating and defecating in them

> multiple times a day. We've worked very hard with her and she now does not

> pee in her pants except at night and we've only had maybe 5 times in the

> last year where she's pooped in her pants. However, we cannot seem to get

> across to her the need to properly wipe herself after she goes. We remind

> every time she goes to the bathroom, we've tried a picture chart, and while

> those things work for a while, she slides back into not wiping or washing

> her hands.

>

> She sees a targeted case manager through our local mental health agency

> and the case manager has talked with her and worked with her but it only

> lasts for so long before she's back to not using proper hygiene. Getting

> her teachers at school on board about this has been less than successful,

> too. She also still pees the bed at night. She's outgrown Pull-Ups and now

> we're putting her in adult-type pull-ups and using reusable bed chucks and

> waterproof mattress pads.

>

> We are really at our wits end in how to get her to catch on to the concept

> of cleaning herself and we're willing to try anything we can find. There

> are no autism therapy programs available to us without traveling a great

> distance.

>

> Thanks in advance!

>

>

>

> ------------------------------------

>

> The Power Pumper makes physical therapy fun! Plus, funding sources are

> available to provide a free Power Pumper to anyone who needs it.

> ------------------------

> http://www.powerpumper.com/friends/jrox.php?uid=bridalsh

> ------------------------

> Autism_in_Girls_and_Women-subscribe

> ------------------------

> Autism_in_Girls_and_Women-unsubscribe@...! Groups Links

>

>

>

>

--

Marie " I don't think the worst thing that could happen to me is having a

child with special needs. I think the worst thing would be to raise a child

who is cruel to people with special needs. " ~ Mickelson Butman