Re: Thank you!

[Guest guest]

Hello JEnnifer and welcome to the list.  I am the mother of 7.  All have theier exceptionalities, but I am here because of our next to youngest - Elie, age 26.  When he was a young child - up thru age 8, he had numerous pneumonias.  Never hospuitalized with them.  Then from age 8 until 19 - a really bad case where he became ill suddenly and went into renal shut down.  LEsson learned - if our son dioesn't drink at least 2 12 ounce glasses of something in between every meal - we watch CLOSELY.

Elie was self trained for urine by age 6.  But it took many years of base line data colleccting, a really determined team -home and school to get him reliably bowel trained.For those of our kids who don't mind being wet or dirty,sd we need to just start with timed toileting.  What I found is that as Elie became better able to discern dryness/wetness/soiled/clean  which happened after age 10, he was better able to tell us that he was - and then that he needed to toilet.  Time and patience.  There are few of our kids who will never be trained.

My personal take - and everyone does not feel as I do- is that diapers, pullups slow down the process.  We switched at about age 6 to white briefs.  Easy to bleach clean, cheap, and I could send 4-6 sets of clothes to school so that he was always clean and dry. 

Alos, we never left to go anywhere without toileting first.   And then frequently upon arriving as well.  And that included toileting before we left a restaurant.

 

Hello,

I just wanted to thank all of you for your warm welcome.  I have joined many online groups (DS, FASD, Myopathy)  in the past but always felt like an outsider as a new member.  Your kindness and words of encouragement mean so much to me.

 

I have enjoyed getting to know a little bit about you and your children and I hope I will be a part of this group for years to come.  It is my desire to, eventually, be a help to all of you and your families.  Right now this dual diagnosis area is new terrritory for me so I might be asking more questions than helping to answer some - I hope you understand.

 

As far as Blake's health, he is doing well.  He was born with cataracts in both eyes and had some hearing loss.  He just had his (hopefully) last eye surgery last June and his hearing has been within the normal range since he had surgery and tubes at age 1.  We almost lost him when he was 6 weeks old secondary to having RSV - I think breastfeeding him helped.  He also was hospitalized in 2010 and 2011 with pneumonia but has been doing fine since.

 

One question, do any of you  have any tips for getting Blake potty-trained?  We have tried just about everything.  He doesn't seem to mind having a wet or soiled pull-up.  He even wets through his pants and rarely says anything. 

 

Thank you!

 

Stauffer

-- Sara- different pathways lead to Nirvana.

[Guest guest]

Hi and welcome to this amazing group! I just joined a few weeks ago - so happy I did ! We have an 11 yr old, Jackie, who has DS/AD.When she was about 6 we started potty training and we did just what the others in this group stated.We ditched the pull-ups during the day and put something on that helped her feel the wetness. We put her on a strict timing schedule at home and at school.It's not going to be easy - we had days where we changed her clothes 20 times!! It took us about a year but finally she stopped wetting herself.She still doesn't tell us she has to go, but we take her every 2 hours or

so (more often in the evening), and if she starts giggling, we know she has to go #2. For some reason, the sensation of needing to poop cracks her up. Now that spring is here it will be easier because shorts are easier to deal with than pants.It will take time and patience but if you hang in there and keep trying, hopefully you'll have success. Has anyone in the group been able to remove the night-time pull-up? If so - how did you do it? How long did it take, etc?Jackie still wears one to bed and I must admit, it's because I'm too exhausted at the thought of getting up and changing sheets all night. Beth To: Sent: Monday, March 19, 2012 8:49 AM Subject: Thank you!

Hello,

I just wanted to thank all of you for your warm welcome. I have joined many online groups (DS, FASD, Myopathy) in the past but always felt like an outsider as a new member. Your kindness and words of encouragement mean so much to me.

I have enjoyed getting to know a little bit about you and your children and I hope I will be a part of this group for years to come. It is my desire to, eventually, be a help to all of you and your families. Right now this dual diagnosis area is new terrritory for me so I might be asking more questions than helping to answer some - I hope you understand.

As far as Blake's health, he is doing well. He was born with cataracts in both eyes and had some hearing loss. He just had his (hopefully) last eye surgery last June and his hearing has been within the normal range since he had surgery and tubes at age 1. We almost lost him when he was 6 weeks old secondary to having RSV - I think breastfeeding him helped. He also was hospitalized in 2010 and 2011 with pneumonia but has been doing fine since.

One question, do any of you have any tips for getting Blake potty-trained? We have tried just about everything. He doesn't seem to mind having a wet or soiled pull-up. He even wets through his pants and rarely says anything.

Thank you!

Stauffer

[Guest guest]

✟ JMJ ✟ Hi ,Welcome to the group. I see you joined a group for FASD. Is this for Blake? I ask because my daughter (my reason for joining this group) also has FASD among her many issues.Blessings,

Hi and welcome to this amazing group! I just joined a few weeks ago - so happy I did ! We have an 11 yr old, Jackie, who has DS/AD.When she was about 6 we started potty training and we did just what the others in this group stated.We ditched the pull-ups during the day and put something on that helped her feel the wetness. We put her on a strict timing schedule at home and at school.It's not going to be easy - we had days where we changed her clothes 20 times!! It took us about a year but finally she stopped wetting herself.She still doesn't tell us she has to go, but we take her every 2 hours or

so (more often in the evening), and if she starts giggling, we know she has to go #2. For some reason, the sensation of needing to poop cracks her up. Now that spring is here it will be easier because shorts are easier to deal with than pants.It will take time and patience but if you hang in there and keep trying, hopefully you'll have success. Has anyone in the group been able to remove the night-time pull-up? If so - how did you do it? How long did it take, etc?Jackie still wears one to bed and I must admit, it's because I'm too exhausted at the thought of getting up and changing sheets all night. Beth To: Sent: Monday, March 19, 2012 8:49 AM Subject: Thank you!

Hello,

I just wanted to thank all of you for your warm welcome. I have joined many online groups (DS, FASD, Myopathy) in the past but always felt like an outsider as a new member. Your kindness and words of encouragement mean so much to me.

I have enjoyed getting to know a little bit about you and your children and I hope I will be a part of this group for years to come. It is my desire to, eventually, be a help to all of you and your families. Right now this dual diagnosis area is new terrritory for me so I might be asking more questions than helping to answer some - I hope you understand.

As far as Blake's health, he is doing well. He was born with cataracts in both eyes and had some hearing loss. He just had his (hopefully) last eye surgery last June and his hearing has been within the normal range since he had surgery and tubes at age 1. We almost lost him when he was 6 weeks old secondary to having RSV - I think breastfeeding him helped. He also was hospitalized in 2010 and 2011 with pneumonia but has been doing fine since.

One question, do any of you have any tips for getting Blake potty-trained? We have tried just about everything. He doesn't seem to mind having a wet or soiled pull-up. He even wets through his pants and rarely says anything.

Thank you!

Stauffer

[Guest guest]

i never used pull ups at night either, but Elie never wet himself after age 6 unless he was very ill.  BUT I used the hospital drawsheet method:  a waterproof washable pad, then a sheet folded in thirds  applied to the middle of the bed and tucked tigtlky under the mattress , and then another sheet folded in thirds slightly higher than the first and tucked snugly under the mattress.  Then one can just take the draw sheet off to the layer of wetness.  OF course washing linen didn't bother me. 

Elie also wore night shirts for years - white briefs with a much larger than him white t shirt.   much easier for laundry. 

 

Hi and welcome to this amazing group!  I just joined a few weeks ago - so happy I did ! 

We have an 11 yr old, Jackie, who has DS/AD.When she was about 6 we started potty training and we did just what the others in this group stated.We ditched the pull-ups during the day and put something on that helped her feel the wetness. 

We put her on a strict timing schedule at home and at school.It's not going to be easy - we had days where we changed her clothes 20 times!!  It took us about a year but finally she stopped wetting herself.

She still doesn't tell us she has to go, but we take her every 2 hours or

so (more often in the evening), and if she starts giggling, we know she has to go #2.  For some reason, the sensation of needing to poop cracks her up. Now that spring is here it will be easier because shorts are easier to deal with than pants.

It will take time and patience but if you hang in there and keep trying, hopefully you'll have success. Has anyone in the group been able to remove the night-time pull-up?  If so - how did you do it? How long did it take, etc?

Jackie still wears one to bed and I must admit, it's because I'm too exhausted at the thought of getting up and changing sheets all night.   Beth

 

To:

Sent: Monday, March 19, 2012 8:49 AM Subject: Thank you!

 

Hello,

I just wanted to thank all of you for your warm welcome.  I have joined many online groups (DS, FASD, Myopathy)  in the past but always felt like an outsider as a new member.  Your kindness and words of encouragement mean so much to me.

 

I have enjoyed getting to know a little bit about you and your children and I hope I will be a part of this group for years to come.  It is my desire to, eventually, be a help to all of you and your families.  Right now this dual diagnosis area is new terrritory for me so I might be asking more questions than helping to answer some - I hope you understand.

 

As far as Blake's health, he is doing well.  He was born with cataracts in both eyes and had some hearing loss.  He just had his (hopefully) last eye surgery last June and his hearing has been within the normal range since he had surgery and tubes at age 1.  We almost lost him when he was 6 weeks old secondary to having RSV - I think breastfeeding him helped.  He also was hospitalized in 2010 and 2011 with pneumonia but has been doing fine since.

 

One question, do any of you  have any tips for getting Blake potty-trained?  We have tried just about everything.  He doesn't seem to mind having a wet or soiled pull-up.  He even wets through his pants and rarely says anything. 

 

Thank you!

 

Stauffer

-- Sara- different pathways lead to Nirvana.

[Guest guest]

Thanks Beth and Sara,

I really need to implement the potty schedule and talk to the school more about the underwear.

We have used (supposedly) waterproof pads along with thick bath towels but Blake oftentimes wets all the way through to the mattress anyway. The older he gets the harder it is to keep his mattress dry. He has had major melt downs (two to three a day) the last few days so my husband and I have been dealing with all of that and haven't been able to concentrate on the potty issue as much as we would like.

Thanks for all of your ideas.

Hi and welcome to this amazing group! I just joined a few weeks ago - so happy I did !

We have an 11 yr old, Jackie, who has DS/AD.

When she was about 6 we started potty training and we did just what the others in this group stated.

We ditched the pull-ups during the day and put something on that helped her feel the wetness.

We put her on a strict timing schedule at home and at school.

It's not going to be easy - we had days where we changed her clothes 20 times!! It took us about a year but finally she stopped wetting herself.

She still doesn't tell us she has to go, but we take her every 2 hours or so (more often in the evening), and if she starts giggling, we know she has to go #2. For some reason, the sensation of needing to poop cracks her up.

Now that spring is here it will be easier because shorts are easier to deal with than pants.

It will take time and patience but if you hang in there and keep trying, hopefully you'll have success.

Has anyone in the group been able to remove the night-time pull-up? If so - how did you do it? How long did it take, etc?

Jackie still wears one to bed and I must admit, it's because I'm too exhausted at the thought of getting up and changing sheets all night.

Beth

To: Sent: Monday, March 19, 2012 8:49 AMSubject: Thank you!

Hello,

I just wanted to thank all of you for your warm welcome. I have joined many online groups (DS, FASD, Myopathy) in the past but always felt like an outsider as a new member. Your kindness and words of encouragement mean so much to me.

I have enjoyed getting to know a little bit about you and your children and I hope I will be a part of this group for years to come. It is my desire to, eventually, be a help to all of you and your families. Right now this dual diagnosis area is new terrritory for me so I might be asking more questions than helping to answer some - I hope you understand.

As far as Blake's health, he is doing well. He was born with cataracts in both eyes and had some hearing loss. He just had his (hopefully) last eye surgery last June and his hearing has been within the normal range since he had surgery and tubes at age 1. We almost lost him when he was 6 weeks old secondary to having RSV - I think breastfeeding him helped. He also was hospitalized in 2010 and 2011 with pneumonia but has been doing fine since.

One question, do any of you have any tips for getting Blake potty-trained? We have tried just about everything. He doesn't seem to mind having a wet or soiled pull-up. He even wets through his pants and rarely says anything.

Thank you!

Stauffer

-- Sara- different pathways lead to Nirvana.

[Guest guest]

For a child in a regular bed, extra large contractor garbage bags or a vinyl type matttress cover will protect the matress.  My suggestions were only to keep enough wet away from your son so he sleeps!

 

Thanks Beth and Sara,

I really need to implement the potty schedule and talk to the school more about the underwear.

We have used (supposedly) waterproof pads along with thick bath towels but Blake oftentimes wets all the way through to the mattress anyway.  The older he gets the harder it is to keep his mattress dry.  He has had major melt downs (two to three a day) the last few days so my husband and I have been dealing with all of that and haven't been able to concentrate on the potty issue as much as we would like.

 

Thanks for all of your ideas.

 

 

Hi and welcome to this amazing group!  I just joined a few weeks ago - so happy I did !

 

We have an 11 yr old, Jackie, who has DS/AD.

When she was about 6 we started potty training and we did just what the others in this group stated.

We ditched the pull-ups during the day and put something on that helped her feel the wetness. 

We put her on a strict timing schedule at home and at school.

It's not going to be easy - we had days where we changed her clothes 20 times!!  It took us about a year but finally she stopped wetting herself.

She still doesn't tell us she has to go, but we take her every 2 hours or so (more often in the evening), and if she starts giggling, we know she has to go #2.  For some reason, the sensation of needing to poop cracks her up.

 

Now that spring is here it will be easier because shorts are easier to deal with than pants.

It will take time and patience but if you hang in there and keep trying, hopefully you'll have success.

 

Has anyone in the group been able to remove the night-time pull-up?  If so - how did you do it? How long did it take, etc?

Jackie still wears one to bed and I must admit, it's because I'm too exhausted at the thought of getting up and changing sheets all night. 

 

Beth

 

To: Sent: Monday, March 19, 2012 8:49 AM

Subject: Thank you!

 

Hello,

I just wanted to thank all of you for your warm welcome.  I have joined many online groups (DS, FASD, Myopathy)  in the past but always felt like an outsider as a new member.  Your kindness and words of encouragement mean so much to me.

 

I have enjoyed getting to know a little bit about you and your children and I hope I will be a part of this group for years to come.  It is my desire to, eventually, be a help to all of you and your families.  Right now this dual diagnosis area is new terrritory for me so I might be asking more questions than helping to answer some - I hope you understand.

 

As far as Blake's health, he is doing well.  He was born with cataracts in both eyes and had some hearing loss.  He just had his (hopefully) last eye surgery last June and his hearing has been within the normal range since he had surgery and tubes at age 1.  We almost lost him when he was 6 weeks old secondary to having RSV - I think breastfeeding him helped.  He also was hospitalized in 2010 and 2011 with pneumonia but has been doing fine since.

 

One question, do any of you  have any tips for getting Blake potty-trained?  We have tried just about everything.  He doesn't seem to mind having a wet or soiled pull-up.  He even wets through his pants and rarely says anything. 

 

Thank you!

 

Stauffer

-- Sara- different pathways lead to Nirvana.

-- Sara- different pathways lead to Nirvana.

[Guest guest]

Hello everyone,

I just read all of the groups messages and I am trying to reply to all of them but I am so bad on the computer, so sorry that I don't really know what I am doing.

To answer your question, , "No", Blake does not have FASD, my 4 year old son, does. Blake having DS and probable Autism is hard enough but my husband and I struggle much more with Sammy's FASD - his birth mother drank three times + the legal limit of alcohol throughout her pregnancy, drinks until she passes out, smoked crack cocaine, loves marijuana

(lots of it), smokes cigarettes and was using Vicodin. Sammy tested positive for opiates when he was born and had TERRIBLE withdrawals, for the first four days especially - he did not sleep for more than 20 minutes at a time during those days. After that he had seizure-like activity until about three months of age.

I will be thinking of you and your daughter and I hope she is doing well.

Hi and welcome to this amazing group! I just joined a few weeks ago - so happy I did !

We have an 11 yr old, Jackie, who has DS/AD.

When she was about 6 we started potty training and we did just what the others in this group stated.

We ditched the pull-ups during the day and put something on that helped her feel the wetness.

We put her on a strict timing schedule at home and at school.

It's not going to be easy - we had days where we changed her clothes 20 times!! It took us about a year but finally she stopped wetting herself.

She still doesn't tell us she has to go, but we take her every 2 hours or so (more often in the evening), and if she starts giggling, we know she has to go #2. For some reason, the sensation of needing to poop cracks her up.

Now that spring is here it will be easier because shorts are easier to deal with than pants.

It will take time and patience but if you hang in there and keep trying, hopefully you'll have success.

Has anyone in the group been able to remove the night-time pull-up? If so - how did you do it? How long did it take, etc?

Jackie still wears one to bed and I must admit, it's because I'm too exhausted at the thought of getting up and changing sheets all night.

Beth

To: Sent: Monday, March 19, 2012 8:49 AMSubject: Thank you!

Hello,

I just wanted to thank all of you for your warm welcome. I have joined many online groups (DS, FASD, Myopathy) in the past but always felt like an outsider as a new member. Your kindness and words of encouragement mean so much to me.

I have enjoyed getting to know a little bit about you and your children and I hope I will be a part of this group for years to come. It is my desire to, eventually, be a help to all of you and your families. Right now this dual diagnosis area is new terrritory for me so I might be asking more questions than helping to answer some - I hope you understand.

As far as Blake's health, he is doing well. He was born with cataracts in both eyes and had some hearing loss. He just had his (hopefully) last eye surgery last June and his hearing has been within the normal range since he had surgery and tubes at age 1. We almost lost him when he was 6 weeks old secondary to having RSV - I think breastfeeding him helped. He also was hospitalized in 2010 and 2011 with pneumonia but has been doing fine since.

One question, do any of you have any tips for getting Blake potty-trained? We have tried just about everything. He doesn't seem to mind having a wet or soiled pull-up. He even wets through his pants and rarely says anything.

Thank you!

Stauffer

[Guest guest]

Sara,

Yeah, you are right. We used to have his mattress covered completely with a vinyl type cover when he was younger and it worked well. I am going to try to pick one up tomorrow. It will be much easier than what we have been doing.

Thanks!

Hi and welcome to this amazing group! I just joined a few weeks ago - so happy I did !

We have an 11 yr old, Jackie, who has DS/AD.

When she was about 6 we started potty training and we did just what the others in this group stated.

We ditched the pull-ups during the day and put something on that helped her feel the wetness.

We put her on a strict timing schedule at home and at school.

It's not going to be easy - we had days where we changed her clothes 20 times!! It took us about a year but finally she stopped wetting herself.

She still doesn't tell us she has to go, but we take her every 2 hours or so (more often in the evening), and if she starts giggling, we know she has to go #2. For some reason, the sensation of needing to poop cracks her up.

Now that spring is here it will be easier because shorts are easier to deal with than pants.

It will take time and patience but if you hang in there and keep trying, hopefully you'll have success.

Has anyone in the group been able to remove the night-time pull-up? If so - how did you do it? How long did it take, etc?

Jackie still wears one to bed and I must admit, it's because I'm too exhausted at the thought of getting up and changing sheets all night.

Beth

To: Sent: Monday, March 19, 2012 8:49 AMSubject: Thank you!

Hello,

I just wanted to thank all of you for your warm welcome. I have joined many online groups (DS, FASD, Myopathy) in the past but always felt like an outsider as a new member. Your kindness and words of encouragement mean so much to me.

I have enjoyed getting to know a little bit about you and your children and I hope I will be a part of this group for years to come. It is my desire to, eventually, be a help to all of you and your families. Right now this dual diagnosis area is new terrritory for me so I might be asking more questions than helping to answer some - I hope you understand.

As far as Blake's health, he is doing well. He was born with cataracts in both eyes and had some hearing loss. He just had his (hopefully) last eye surgery last June and his hearing has been within the normal range since he had surgery and tubes at age 1. We almost lost him when he was 6 weeks old secondary to having RSV - I think breastfeeding him helped. He also was hospitalized in 2010 and 2011 with pneumonia but has been doing fine since.

One question, do any of you have any tips for getting Blake potty-trained? We have tried just about everything. He doesn't seem to mind having a wet or soiled pull-up. He even wets through his pants and rarely says anything.

Thank you!

Stauffer

-- Sara- different pathways lead to Nirvana.

-- Sara- different pathways lead to Nirvana.