Dealing with People

[Guest guest]

Sorry, guys/gals, this is a long one!

First of all, I AM NOT AN EXPERT on dealing with

friends/family/strangers, nor do I always handle things well, but wanted

to offer comfort that I understand and have been through the

comments/remarks that people make regarding RSS.

Fortunately, I found out had RSS back when he was 4 months old.

This gave me and my family a lot of time to adjust. However, that

didn't elminate me from going through the suggestions/comments/remarks

from friends and family. They meant well, but it still was hurtful or

frustrating. One thing that helps is to get a handful of pamphlets

explaining about RSS. Whenever we were together with family and friends

and someone wasn't " getting it " as far as what RSS was, I would hand

them a pamphlet. They were able to take it home and read it and

understand it. It helped to answer some of their questions without me

saying a word! It also litigitmizes the fact that actually has a

syndrome. For some reason, I would come across people that acted like

we were making up this syndrome. They would pass it off that too many

doctors " label " kids or that being short isn't an illness or something

really bad (which it isn't, but doesn't mean we don't have our

struggles). The pamphlet would let them know that there really is a

syndrome called -Silver. Sometimes I would direct those with

access to computers to go to The Magic Foundation website to get even

more information or encourage them to " search " the words -Silver

Syndrome or Silver- Syndrome on the web. Some of my family

members really did this and have learned a great deal and have become

VERY supportive of even more than I had hoped.

Yes, I have come across the " why is he so little " , " he's such a little

munchkin/midget " , " oh, he'll grow when he's a teenager and eats you

out of house and home " , or " my uncle was a premie and now he's 6'4 "

tall " , etc. etc. etc.. Of course, not to mention the stares and

" weird " looks on their face. Some see me punishing my son and give me

this look like, " Oh, my God, she's coming down way to hard on such a

little baby " . Not knowing he's 2 1/2 years old throwing a tantrum and

needs to be repremanded! ha.ha. I have give different reactions, and

not always nice. I have told one lady (after her commenting he's so

small) " Well, no sh_t! I didn't notice and will inform his doctor when

we see him again " . Now, this is NOT like my personality, but I was

still adjusting to the news of having RSS and wasn't in the best of

moods. I did feel bad later (a little). I had one woman recently

say over and over, " Look at him, he's so cute and such a little

munchkin/midget " . I finally had it, and politely said, " You know,

can't help that he has -Silver Syndrome, but I will say his

hearing is fine and I would appreciate your not calling a child

names " . Needless to say, that woman suddenly looked 2 inches tall and

I could tell she felt horrible. I didn't go into what RSS was because I

thought she could either think it is bad or go look it up herself and

find out what it is.

Now those are my bad days. Most of the time, I try to explain what RSS

is because I look at it as educating people. So maybe the next time

they see someone of very small stature that they will remember and

treat that person with dignity. This has been my approach for a while

now and have actually become comfortable with handling it this way. I

don't go into real big details. I just basically say it's a height

disorder and that he will always be short. Mentally he is fine and will

live a normal lifespan. That pretty much answers the important

questions they always seem to ask. I don't always have the time so

keeping it short and sweet is easy for me. Like I said, this is dealing

with strangers. Friends and Family are the important ones so I go into

greater details with them, and also give them the pamphlet.

As for telling his preschool...........I definately would tell the

teacher and future teacher's he/she may have. I have met a wonderful

mom that has an RSS son and she has the best attitude in regards to her

son having RSS. She has taught me a lot about when gets to school

age. Her son is around 9 or 10 years old now. She told me that she

always tells her son's teachers that he has RSS. The reason is so the

teacher is prepared when a situation may arise that she would need to

know. Also, before school starts, she sits down with the teacher and

explains that she does not want other children to " baby " him because he

is small. He is to not sit on other children's laps or be picked up

and carried around. If he needs help to reach something, there should

be a stool close by for him to use. She wants her son to be treated no

different and if he needed accomodations to be made because of his

shorter height (such as using a stool) then they should be made. She

wants her son to adapt to life without help so he will be ready for

those situations when he's older that might come up and be difficult.

Also, she has in her garage a step stool so that he can get in and out

of their truck himself and be as independent as possible. He is

enrolled in many activities ranging from karate to Little League (no pun

intended! ) As for her son with friends.....since the parents have

been very open about his RSS with his friends, he probably has " too

many " friends! They all love him and treat him as just one of the

buddies of the group. They all know about his RSS, and to be honest,

don't care and wonder what the big deal is! Like I said, this mom is

great in handling his RSS and I've learned alot. Unfortunately, I've

lost contact with her over this past year, but plan on finding her and

asking her to join this list.

I apologize for this being so long, but I really wanted to share this

with whoever wants to listen. Again, I'm not the expert or have any

answers on how to make people be more sensitive. These are just my

comments and suggestions.

Good luck!

Stacie

's Mommy ('s too!)

[Guest guest]

Stacie,

Thank you very much for this excellent posting!!!

Inga

At 01:10 PM 5/12/99 -0700, tclfam@... wrote:

>From: tclfam@...

>

>Sorry, guys/gals, this is a long one!

>

>First of all, I AM NOT AN EXPERT on dealing with

>friends/family/strangers, nor do I always handle things well, but wanted

>to offer comfort that I understand and have been through the

>comments/remarks that people make regarding RSS.

>

>Fortunately, I found out had RSS back when he was 4 months old.

>This gave me and my family a lot of time to adjust. However, that

>didn't elminate me from going through the suggestions/comments/remarks

>from friends and family. They meant well, but it still was hurtful or

>frustrating. One thing that helps is to get a handful of pamphlets

>explaining about RSS. Whenever we were together with family and friends

>and someone wasn't " getting it " as far as what RSS was, I would hand

>them a pamphlet. They were able to take it home and read it and

>understand it. It helped to answer some of their questions without me

>saying a word! It also litigitmizes the fact that actually has a

>syndrome. For some reason, I would come across people that acted like

>we were making up this syndrome. They would pass it off that too many

>doctors " label " kids or that being short isn't an illness or something

>really bad (which it isn't, but doesn't mean we don't have our

>struggles). The pamphlet would let them know that there really is a

>syndrome called -Silver. Sometimes I would direct those with

>access to computers to go to The Magic Foundation website to get even

>more information or encourage them to " search " the words -Silver

>Syndrome or Silver- Syndrome on the web. Some of my family

>members really did this and have learned a great deal and have become

>VERY supportive of even more than I had hoped.

>

>Yes, I have come across the " why is he so little " , " he's such a little

>munchkin/midget " , " oh, he'll grow when he's a teenager and eats you

>out of house and home " , or " my uncle was a premie and now he's 6'4 "

>tall " , etc. etc. etc.. Of course, not to mention the stares and

> " weird " looks on their face. Some see me punishing my son and give me

>this look like, " Oh, my God, she's coming down way to hard on such a

>little baby " . Not knowing he's 2 1/2 years old throwing a tantrum and

>needs to be repremanded! ha.ha. I have give different reactions, and

>not always nice. I have told one lady (after her commenting he's so

>small) " Well, no sh_t! I didn't notice and will inform his doctor when

>we see him again " . Now, this is NOT like my personality, but I was

>still adjusting to the news of having RSS and wasn't in the best of

>moods. I did feel bad later (a little). I had one woman recently

>say over and over, " Look at him, he's so cute and such a little

>munchkin/midget " . I finally had it, and politely said, " You know,

>can't help that he has -Silver Syndrome, but I will say his

>hearing is fine and I would appreciate your not calling a child

>names " . Needless to say, that woman suddenly looked 2 inches tall and

>I could tell she felt horrible. I didn't go into what RSS was because I

>thought she could either think it is bad or go look it up herself and

>find out what it is.

>

>Now those are my bad days. Most of the time, I try to explain what RSS

>is because I look at it as educating people. So maybe the next time

>they see someone of very small stature that they will remember and

>treat that person with dignity. This has been my approach for a while

>now and have actually become comfortable with handling it this way. I

>don't go into real big details. I just basically say it's a height

>disorder and that he will always be short. Mentally he is fine and will

>live a normal lifespan. That pretty much answers the important

>questions they always seem to ask. I don't always have the time so

>keeping it short and sweet is easy for me. Like I said, this is dealing

>with strangers. Friends and Family are the important ones so I go into

>greater details with them, and also give them the pamphlet.

>

>As for telling his preschool...........I definately would tell the

>teacher and future teacher's he/she may have. I have met a wonderful

>mom that has an RSS son and she has the best attitude in regards to her

>son having RSS. She has taught me a lot about when gets to school

>age. Her son is around 9 or 10 years old now. She told me that she

>always tells her son's teachers that he has RSS. The reason is so the

>teacher is prepared when a situation may arise that she would need to

>know. Also, before school starts, she sits down with the teacher and

>explains that she does not want other children to " baby " him because he

>is small. He is to not sit on other children's laps or be picked up

>and carried around. If he needs help to reach something, there should

>be a stool close by for him to use. She wants her son to be treated no

>different and if he needed accomodations to be made because of his

>shorter height (such as using a stool) then they should be made. She

>wants her son to adapt to life without help so he will be ready for

>those situations when he's older that might come up and be difficult.

>Also, she has in her garage a step stool so that he can get in and out

>of their truck himself and be as independent as possible. He is

>enrolled in many activities ranging from karate to Little League (no pun

>intended! ) As for her son with friends.....since the parents have

>been very open about his RSS with his friends, he probably has " too

>many " friends! They all love him and treat him as just one of the

>buddies of the group. They all know about his RSS, and to be honest,

>don't care and wonder what the big deal is! Like I said, this mom is

>great in handling his RSS and I've learned alot. Unfortunately, I've

>lost contact with her over this past year, but plan on finding her and

>asking her to join this list.

>

>I apologize for this being so long, but I really wanted to share this

>with whoever wants to listen. Again, I'm not the expert or have any

>answers on how to make people be more sensitive. These are just my

>comments and suggestions.

>

>Good luck!

>

>Stacie

>'s Mommy ('s too!)

>

>

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

>Get involved. Share your thoughts!

>http://www.onelist.com

>Join the ONElist Weekly Survey. Go to homepage for details.

>

>

[Guest guest]

In a message dated 99-05-12 18:46:21 EDT, you write:

<< I have told one lady (after her commenting he's so

small) " Well, no sh_t! I didn't notice and will inform his doctor when

we see him again " . >>

Stacie,

This was so funny! I have felt exactly like that at times!

ette

[Guest guest]

Stacie,

Thank you for your wonderful and informative note about these

issues. This is exactly the sort of discussion I was hoping we

would get into on this list; actually much more important to me

than the medical info (that's useful, too, but I can get most of

that from 's doctors).

I'm definitely going to save this article, and pass it on to

some of my family and friends - including my fiancee Kathie!

Joe, father to , age 4, 33 inches, 22 pounds, GT

[Guest guest]

Thanks Joe for the kind words about my thoughts/comments/ideas/etc. on

having RSS and what we go through. I wasn't sure if I worded everything

correctly so it was very nice to know that it seemed to have turned out.

I agree, I definately would like to hear more of the personal stories from

people. That is what I think we all need more than anything. Yes, we can

get medical info. from our doctor(s), but it's the daily living with RSS

that the doctors can't help us with.

Thanks again!!!!!

Stacie

Mommy to daughter, (almost 6!) and son, (2 1/2 yrs.) with RSS &

g-tube

ph Blau wrote:

>

>

> Stacie,

>

> Thank you for your wonderful and informative note about these

> issues. This is exactly the sort of discussion I was hoping we

> would get into on this list; actually much more important to me

> than the medical info (that's useful, too, but I can get most of

> that from 's doctors).

>

> I'm definitely going to save this article, and pass it on to

> some of my family and friends - including my fiancee Kathie!

>

> Joe, father to , age 4, 33 inches, 22 pounds, GT

>

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

> Get involved. Share your thoughts!

> http://www.onelist.com

> Join the ONElist Weekly Survey. Go to homepage for details.

[Guest guest]

I've been thinking a lot the past few days about Stacie's recent

posting, on how to deal with other people's reactions to RSS kids,

and how they are treated. One thing I've realized is that I

also need to change the way I treat my own son (recalling that

line from the Bible about not pointing out the speck in someone

else's eye when you have a log in your own!). I must confess

that I too often treat as younger than he actually is.

Part of this stems from being a novice parent: if I had other

older children, I would know better what to expect of him and

how to treat him age-appropriately. Part of it is also due to

his small size and development delays associated with RSS.

Here's one big example: is 4 years old, and still sleeps

in a crib. I convinced myself this was okay because he still

fits fine in it, never tries to climb out of it, and it's easier

to keep him confined when he's on his nighttime tube feedings.

But my fiancee Kathie has been urging me for a while to get a

toddler bed for him; I promised we will when we move into our

new house next month.

When I first met Kathie, I was still lifting in and out

of his car seat, booster chair, etc. She rightly pointed out

that I should encourage him to climb in and out on his own,

maybe with just a helping hand. He now does it most of the

time, and he's pretty proud that he can even fasten his own

seat belt! (This independence thing can go too far, though:

yesterday he locked me out of the house when I stepped out

back to get the laundry!)

still doesn't dress or undress himself, but I've

learned to actively involve him in it, and he's making good

progress. My main problem here is patience; we're often in

a hurry, getting him ready for school and me ready for work

in the morning, and it's faster for me to just put his

clothes on, rather than letting him help. It will be nice

when there's another person here to help with getting him

ready in the morning.

is also not potty trained yet. If he was a normal

sized 4 year-old, he'd be outgrowing the largest diapers by

now, but he still fits the stage 3 diapers. Also, if he was

attending a regular preschool, they probably would've required

him to be potty trained, but he's been going to a special needs

school, and now Head Start, where they don't require it. His

teachers' attitudes have been to just wait until he's ready.

For over a year they've been sitting him down on a potty, and

I've been doing the same at home, but he's never done much there.

Part of the problem is that he doesn't drink much during the day;

he gets most of his fluids through his tube at night (and has a

very soaked diaper in the morning!). Because of that, he'll

probably continue to wear diapers or pull-ups at night for a

while, but I'd like to at least get him trained during the day.

We recently met with a child psychologist, who gave us some

good potty training tips for special needs kids. I'll share

this info privately with anyone who's interested; it seems

a bit off-topic to post to the whole list. We were planning

to make a big push this summer to get him trained, but the

psych. suggested we should wait, because of all the upcoming

major changes in 's life (new home, new mommy), and

he also has a chordee repair surgery scheduled for mid-July.

So we'll hold off until things settle down in the fall.

doesn't start kindergarten until the following year,

so that is an absolute " deadline " , but we would like to

have him trained long before then.

- Joe, father to , age 4, 22 pounds, 33 inches, GT

[Guest guest]

Hi, again, Joe!!

Just wanted to let you know that I understand how easy it is to forget that

our kids need to be treated for their age and not their size. As for his

age in potty training, I have heard that from 18 mos. to 4 years old is age

appropriate for not being potty trained. My suggestion would be to just be

as consistent as possible and will eventually do it. It's just

really up to him as " when " , but up to you as far as " guidance " .

I've also heard the statement of " when your child starts to climb out of the

crib is when you put them in a toddler size bed " . Well, my daughter (who

will be 6 in June) never did climb, but that didn't mean she should stay in

her crib. She still would be in the crib if we were to wait for her to

climb out of it! ha. ha. Changing into the " big boy " bed when you move

sounds good to me (in my opinion). He'll just probably associate it

as.....new house....new bed. Have him pick out the new bed/sheets/pillow/

or whatever he can pick out, and really brag at how he's really getting to

be such a big boy now. Getting rails to put on the side of the bed helps (i

think) them to " feel " as though they are still enclosed in a smaller place,

yet they are in a regular bed. My daughter felt more comfortable with the

rails and then eventually we got rid of those also.

As for the getting dressed himself........I don't think 4 years old is too

old to " not " be dressing himself. My daughter knows how to get dressed, but

like you said, time doesn't always allow for me to wait for her. So I dress

her a lot of the time. Whenever you have the chance (like on the weekend),

I would have him try it to get practice, but on those infamous busy days, I

would think it's okay to " help " him along. I do it all the time.

Last, but not least, hearing that other mom I mentioned saying how to

encourage these RSS kids to lead as normal life as possible helps me. Ever

since she talked to me about that, I always make sure that if he's age

appropriate for doing a task, then has to start doing it himself. In

fact, this is a minor example, but we now have his toddler cup on the bottom

shelf of the refrigerator. Whenever he wants a drink, we open the

refrigerator door for him and have him get it out himself. It doesn't sound

like a big task for the rest of us, but for he thinks it is a BIG

DEAL!!!! In fact, I think he's drinking 80% of the time just for the pure

pleasure of getting the cup himself! ha. ha. It's a constant thinking

process, but we just ALWAYS evaluate situations around the house and even in

public that should be able to do or handle. If we need to make

accomodations, then we do and will. I love the example someone gave earlier

about the " light stick " for when is ready to turn the lightswitches

on/off himself. It's those " little " things that we all take for granted,

yet it is very important for them and their self-confidence.

Hope I'm not pushing my own thoughts/ideas on you or anyone else. I just

understand where you are coming from and want to lend some support. Please

take care and look forward to hearing about the new and exciting things that

are going on in your's and 's life.

Take care,

Stacie

Wife to Tim, Mommy to daughter, (almost 6!) and son, (2 1/2

yrs.)--18.4 lbs./30.6 in. with RSS and g-tube.

ph Blau wrote:

>

>

> I've been thinking a lot the past few days about Stacie's recent

> posting, on how to deal with other people's reactions to RSS kids,

> and how they are treated. One thing I've realized is that I

> also need to change the way I treat my own son (recalling that

> line from the Bible about not pointing out the speck in someone

> else's eye when you have a log in your own!). I must confess

> that I too often treat as younger than he actually is.

> Part of this stems from being a novice parent: if I had other

> older children, I would know better what to expect of him and

> how to treat him age-appropriately. Part of it is also due to

> his small size and development delays associated with RSS.

>

> Here's one big example: is 4 years old, and still sleeps

> in a crib. I convinced myself this was okay because he still

> fits fine in it, never tries to climb out of it, and it's easier

> to keep him confined when he's on his nighttime tube feedings.

> But my fiancee Kathie has been urging me for a while to get a

> toddler bed for him; I promised we will when we move into our

> new house next month.

>

> When I first met Kathie, I was still lifting in and out

> of his car seat, booster chair, etc. She rightly pointed out

> that I should encourage him to climb in and out on his own,

> maybe with just a helping hand. He now does it most of the

> time, and he's pretty proud that he can even fasten his own

> seat belt! (This independence thing can go too far, though:

> yesterday he locked me out of the house when I stepped out

> back to get the laundry!)

>

> still doesn't dress or undress himself, but I've

> learned to actively involve him in it, and he's making good

> progress. My main problem here is patience; we're often in

> a hurry, getting him ready for school and me ready for work

> in the morning, and it's faster for me to just put his

> clothes on, rather than letting him help. It will be nice

> when there's another person here to help with getting him

> ready in the morning.

>

> is also not potty trained yet. If he was a normal

> sized 4 year-old, he'd be outgrowing the largest diapers by

> now, but he still fits the stage 3 diapers. Also, if he was

> attending a regular preschool, they probably would've required

> him to be potty trained, but he's been going to a special needs

> school, and now Head Start, where they don't require it. His

> teachers' attitudes have been to just wait until he's ready.

> For over a year they've been sitting him down on a potty, and

> I've been doing the same at home, but he's never done much there.

> Part of the problem is that he doesn't drink much during the day;

> he gets most of his fluids through his tube at night (and has a

> very soaked diaper in the morning!). Because of that, he'll

> probably continue to wear diapers or pull-ups at night for a

> while, but I'd like to at least get him trained during the day.

>

> We recently met with a child psychologist, who gave us some

> good potty training tips for special needs kids. I'll share

> this info privately with anyone who's interested; it seems

> a bit off-topic to post to the whole list. We were planning

> to make a big push this summer to get him trained, but the

> psych. suggested we should wait, because of all the upcoming

> major changes in 's life (new home, new mommy), and

> he also has a chordee repair surgery scheduled for mid-July.

> So we'll hold off until things settle down in the fall.

> doesn't start kindergarten until the following year,

> so that is an absolute " deadline " , but we would like to

> have him trained long before then.

>

> - Joe, father to , age 4, 22 pounds, 33 inches, GT

>

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

> Got an opinion?

> http://www.onelist.com

> Make it count! Sign up for the ONElist Weekly Survey now.

[Guest guest]

Hi ,

Thanks for all the wonderful tips. Being a first time parent it is hard to

know what to expect. Having an RSS child makes it a little tougher.

Thanks loads

Ken M

(Dad to 2 yrs old)

----------

>From: tclfam@...

>To: RSS-Supportonelist

>Subject: Re: Dealing with People

>Date: Mon, May 17, 1999, 4:05 PM

>

> From: tclfam@...

>

> Hi, again, Joe!!

>

> Just wanted to let you know that I understand how easy it is to forget that

> our kids need to be treated for their age and not their size. As for his

> age in potty training, I have heard that from 18 mos. to 4 years old is age

> appropriate for not being potty trained. My suggestion would be to just be

> as consistent as possible and will eventually do it. It's just

> really up to him as " when " , but up to you as far as " guidance " .

>

> I've also heard the statement of " when your child starts to climb out of the

> crib is when you put them in a toddler size bed " . Well, my daughter (who

> will be 6 in June) never did climb, but that didn't mean she should stay in

> her crib. She still would be in the crib if we were to wait for her to

> climb out of it! ha. ha. Changing into the " big boy " bed when you move

> sounds good to me (in my opinion). He'll just probably associate it

> as.....new house....new bed. Have him pick out the new bed/sheets/pillow/

> or whatever he can pick out, and really brag at how he's really getting to

> be such a big boy now. Getting rails to put on the side of the bed helps (i

> think) them to " feel " as though they are still enclosed in a smaller place,

> yet they are in a regular bed. My daughter felt more comfortable with the

> rails and then eventually we got rid of those also.

>

> As for the getting dressed himself........I don't think 4 years old is too

> old to " not " be dressing himself. My daughter knows how to get dressed, but

> like you said, time doesn't always allow for me to wait for her. So I dress

> her a lot of the time. Whenever you have the chance (like on the weekend),

> I would have him try it to get practice, but on those infamous busy days, I

> would think it's okay to " help " him along. I do it all the time.

>

> Last, but not least, hearing that other mom I mentioned saying how to

> encourage these RSS kids to lead as normal life as possible helps me. Ever

> since she talked to me about that, I always make sure that if he's age

> appropriate for doing a task, then has to start doing it himself. In

> fact, this is a minor example, but we now have his toddler cup on the bottom

> shelf of the refrigerator. Whenever he wants a drink, we open the

> refrigerator door for him and have him get it out himself. It doesn't sound

> like a big task for the rest of us, but for he thinks it is a BIG

> DEAL!!!! In fact, I think he's drinking 80% of the time just for the pure

> pleasure of getting the cup himself! ha. ha. It's a constant thinking

> process, but we just ALWAYS evaluate situations around the house and even in

> public that should be able to do or handle. If we need to make

> accomodations, then we do and will. I love the example someone gave earlier

> about the " light stick " for when is ready to turn the lightswitches

> on/off himself. It's those " little " things that we all take for granted,

> yet it is very important for them and their self-confidence.

>

> Hope I'm not pushing my own thoughts/ideas on you or anyone else. I just

> understand where you are coming from and want to lend some support. Please

> take care and look forward to hearing about the new and exciting things that

> are going on in your's and 's life.

>

> Take care,

>

> Stacie

> Wife to Tim, Mommy to daughter, (almost 6!) and son, (2 1/2

> yrs.)--18.4 lbs./30.6 in. with RSS and g-tube.

>

>

>

> ph Blau wrote:

>

>>

>>

>> I've been thinking a lot the past few days about Stacie's recent

>> posting, on how to deal with other people's reactions to RSS kids,

>> and how they are treated. One thing I've realized is that I

>> also need to change the way I treat my own son (recalling that

>> line from the Bible about not pointing out the speck in someone

>> else's eye when you have a log in your own!). I must confess

>> that I too often treat as younger than he actually is.

>> Part of this stems from being a novice parent: if I had other

>> older children, I would know better what to expect of him and

>> how to treat him age-appropriately. Part of it is also due to

>> his small size and development delays associated with RSS.

>>

>> Here's one big example: is 4 years old, and still sleeps

>> in a crib. I convinced myself this was okay because he still

>> fits fine in it, never tries to climb out of it, and it's easier

>> to keep him confined when he's on his nighttime tube feedings.

>> But my fiancee Kathie has been urging me for a while to get a

>> toddler bed for him; I promised we will when we move into our

>> new house next month.

>>

>> When I first met Kathie, I was still lifting in and out

>> of his car seat, booster chair, etc. She rightly pointed out

>> that I should encourage him to climb in and out on his own,

>> maybe with just a helping hand. He now does it most of the

>> time, and he's pretty proud that he can even fasten his own

>> seat belt! (This independence thing can go too far, though:

>> yesterday he locked me out of the house when I stepped out

>> back to get the laundry!)

>>

>> still doesn't dress or undress himself, but I've

>> learned to actively involve him in it, and he's making good

>> progress. My main problem here is patience; we're often in

>> a hurry, getting him ready for school and me ready for work

>> in the morning, and it's faster for me to just put his

>> clothes on, rather than letting him help. It will be nice

>> when there's another person here to help with getting him

>> ready in the morning.

>>

>> is also not potty trained yet. If he was a normal

>> sized 4 year-old, he'd be outgrowing the largest diapers by

>> now, but he still fits the stage 3 diapers. Also, if he was

>> attending a regular preschool, they probably would've required

>> him to be potty trained, but he's been going to a special needs

>> school, and now Head Start, where they don't require it. His

>> teachers' attitudes have been to just wait until he's ready.

>> For over a year they've been sitting him down on a potty, and

>> I've been doing the same at home, but he's never done much there.

>> Part of the problem is that he doesn't drink much during the day;

>> he gets most of his fluids through his tube at night (and has a

>> very soaked diaper in the morning!). Because of that, he'll

>> probably continue to wear diapers or pull-ups at night for a

>> while, but I'd like to at least get him trained during the day.

>>

>> We recently met with a child psychologist, who gave us some

>> good potty training tips for special needs kids. I'll share

>> this info privately with anyone who's interested; it seems

>> a bit off-topic to post to the whole list. We were planning

>> to make a big push this summer to get him trained, but the

>> psych. suggested we should wait, because of all the upcoming

>> major changes in 's life (new home, new mommy), and

>> he also has a chordee repair surgery scheduled for mid-July.

>> So we'll hold off until things settle down in the fall.

>> doesn't start kindergarten until the following year,

>> so that is an absolute " deadline " , but we would like to

>> have him trained long before then.

>>

>> - Joe, father to , age 4, 22 pounds, 33 inches, GT

>>

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