Re: Re: depends, self-esteem, and a rant

[Guest guest]

Hi Jeanne -

Yep, Josh actually goes through the whole day at school, in the depends and a

pair of underpants (the underpants kind of hide the depends so if his pants slip

down or he's in the general boy's bathroom no one sees the depends) and can stay

dry - I think it's really just a security thing for him.  He's adamant, though,

about wearing the depends so I know it's something going on in his head about it

and, hey, if he feels more secure, what's the big deal, right?  Josh tells

people when he needs to go pee so that doesn't seem to be a problem, although,

like with your ds, when he tells you, it means NOW!  Fortunately, there haven't

been any accidents of the other kind since he was really little, thank

goodness.  The school has a change of clothes for him, extra depends, and even

the afterschool care folks have a set of clothes just in case (he tends to fall

asleep at afterschool care so wearing the depends for that reason alone is a

good idea).

Question about your - does he get tired as the day goes on?  I know not

all kids with low muscle tone do but, man, between the apraxia, the global

dyspraxia, and the hypotonia, Josh is totally wiped by 4:30 in the afternoon -

he's usually snoozing when I pick him up at 4:45/5:00 from afterschool care, and

he's back in bed asleep by 8:00 usually.  I've been coming to this email line

for many years now (since Josh was about 4yo) and I know the subject has come up

before but I was asking just to do a reality check.  :-)

As for his father/my ex, he actually thinks he's being a good dad (and, in all

honestly, when he does see Josh, he is good to him - it's just that seeing him

is really inconsistent).  No matter what I might say to the ex, it goes in one

ear and out the other.  I really cut into him not long ago in an email (since

his " phone cuts out " when I talk to him on the phone and the conversation gets a

little too close to home for him - yeah, right), telling him about

the reactions Josh displays when he doesn't do his visits and everything, and

his response was an email saying, " Wow. OK. "   Yesterday's lack of visit took a

toll on Josh.  My ex had suggested, in an email, that we do a skype call in the

evening since he would not be doing his visit with Josh (skype is the internet

video communication thing - you can talk and see each other, it's kind of

cool).  He wrote to call after 7:30, so we did - three times and he never

answered.  Before the call, I

said to Josh that maybe we should call Daddy so he can talk to him and see him,

and Josh's response was a really loud NO.  I said, " Really, you don't want to

talk to Daddy?  You usually like the idea of calling Daddy " and he said again,

" NO! "   I asked him why he didn't want to talk to Daddy and he said, " I mad

Daddy.  Miss him. "   I had to really talk him into making the call, telling him

Daddy loved him, all the usual stuff.  And then the jerk isn't even there when

he said he would be.  The ex knew Josh had a doc appointment yesterday for his

6th grade physical, you'd think he would have at least contacted me to find out

how it went, or, better yet, want to talk to Josh about it, but no.  Josh went

to bed all upset, was really restless for awhile, but fortunately he seemed OK

this a.m.  It's so frustrating - the ex shows up at school conferences (and

makes a big deal about setting up conferences at a time that's convenient for

him), IEPs, but

nothing else - doesn't go to Shriner's exams, doc visits, won't even

participate in the therapist/counselor visits with Josh (the ex and his wife

went to see the counselor without Josh) or other therapies (PT, OT and ST we do

through school and privately), nothing with Special Olympics (wouldn't even go

to the State competitions Josh has been in because " it's not my thing " - Josh

has been in SO for three years now in several different sports - the ex has been

to one practice and one divisionals competition) - but then gets really angry

with me if I don't keep him up to date on stuff (which I am careful not to do -

the divorce decree said I needed to keep him informed and heaven forbid I do

something in violation of the decree!  Of course, he can randomly change

visitations, reduce the number and times, or cancel them all together, change

dates for support payments, pay late, etc., and that's just fine and dandy).

Sorry, I'm just so frustrated over last night's lack of contact for Josh, I

shouldn't go on and on about the ex.  I apologize for ranting about it all. 

Gotta take a deep breath and just move on....

Sherry and Josh