Re: Charlyne and all

[Guest guest]

Hi, Just wanted you to know you can get the good nites through medicaid. The

tiwns get them through medicaid. This is what I did to find someone who would

provide them. I got a list of all the medical suppliers and called each one

until I found someone who provided the good nites. I did try those yukky green

plastic diapers they have for about a week. they were totally AWFUL. None

of the medical supply stores here in my area supplied the good nites only the

yukky green diapers. I found a supply store in Nashville (100 miles away) who

carry them and they ship 8 cases a month to me VIA UPS. Until a few weeks ago I

was having to buy them at Wal-Mart because I was under the impression nnone

would supply them. Just goes to show you how getting on the phone for a while

will pay off.

What we do to help our kids is amazing. We are not only the Mom but also the

nurse, secretary, advocate, maid, medical advisor, speech therapist, physical

therapist, occupational therapist, baby sitter, teacher and very personal

friend. Man! Are we under paid or what!!! lol I think I will go on strike for

more wages. Do you think anyone would notice. Yeah, I think someone would

well actually two people........Hannah and .........they would notice

because they need me as I need them to get through each day. To see their

beautiful smiling faces looking up at me every day gets me through the day and

night and makes me appriciate it a little bit more. That smile I see from ear to

ear is well worth the under paid job I some how fell into here.

Pam mom to identical twins Hannah (DS) and (DS-ASD) age 7

charlyne1121@... wrote:Hi All,

I want to welcome Ann, Ruth and Diane. I am so bad with names, ask a, I

hope I didn't miss anyone. I was only away for a few days but it took me 2

days to get through all the posts, yikes. I have a nine yr. old son with DS

and OCD. He doesn't have autism but whatelse I may never know, hence the ?

mark. He isn't exactly the typical DS. Zeb has very good speech and excells

in the social area, is stubborn beyond words and has mood swings, he has many

sensory issues, not trained at night and talks to his stuffed animals like

they are real. Zeb lines everything up in the house but is partial to video

tapes and stuffed animals. Many days he talks to me through the stuffed

animals.I haved learned more from this group than I have time to tell, not to

mention the support and friendship. Ruth, you mentioned what other tests to

ask for, get an audiology workup. I just had Zeb tested, again because of the

info from this group, he is hearing impaired. I would have never thought he

couldn't hear well and neither would the ped. Ginny, Tinky Winky is part of

our family too, except Zeb calls him or her Dinky. He talk to it like it is

real and do we get the looks when we are out. I have tried to limit taking

the animals out with us but many times it's the only way I can get him out of

the house. We all pick our battles. Irma, I recently found out I could get

free diapers through medicaid, again from this group. I had been buying

goodnights for years. I put the diapers on and changed the routine, no

goodnights, this will not work. Zeb yells because he wants the pullups and

shreds the things everywhere. I can relate to the dark underwear. Donna, I

was stunned to read your story about the sitter. I have a few stories myself

but try to leave Zeb with my kids if possible. I am home for 1 more day and

off again to work. My other foreign worker came in tonight from Japan. She is

adorable, very quiet and scared to death. She volunteers with kids with

disabilites in her country but seeing Zeb in true form has her somewhat

nervous. I had to move her living quarters to a fair, so not to loose the

location, so she is staying in my guest room for tonight. I will be up half

the night worrying that Zeb with sneak into her bed. She has no lock on the

door.The neurologist started Zeb on Topomax and I am incresing the dosage

each week to help with the mood swings. I have just started to see a slight

improvement but it just could be the week. Time will tell. Our heat wave has

finally ended here and hopefully I will have business this weekend. , I

will be thinking of JJ and hoping he gets through the surgery ok. Zeb also

needs his tonsils out but I haven't scheduled it yet with work and fear. I

had to laugh about your looking forward to camp already, glad you were able

to enjoy the break. School starts the day after labor day and I am a nervous

wreck this year. The attorney has filed 3 state complaints in the last 2

weeks and the spec ed battles just continue. Zeb will be in the reg. 4th

grade classroom with and aide but I recieved a letter a few weeks ago telling

me that he will be there with a spec ed teacher and she will be his teacher.

I am expecting Zeb to be given a separate program in the classroom rather

than him really being included. I am not too happy but at this point there is

nothing I can do. I have and independant ed consultant coming in the 2nd week

to monitor the program. I have such a poor district and with their track

record so far the attorney agrees something isn't right but our hands our

tied. I am not looking forward to school starting! I am keeping the attorney

on retainer for this schoolyear. Thinking of all of you and miss the nightly

read. Sorry this was sooo long.

Charlyne

Mom to Zeb 9 DS/OCD ?

[Guest guest]

this what weve been doing for years, but i think its

different in didfferent states. shawna.

--- Pam Houser <p_houser37@...> wrote:

>

> Hi, Just wanted you to know you can get the good

> nites through medicaid. The tiwns get them through

> medicaid. This is what I did to find someone who

> would provide them. I got a list of all the medical

> suppliers and called each one until I found someone

> who provided the good nites. I did try those yukky

> green plastic diapers they have for about a week.

> they were totally AWFUL. None of the medical

> supply stores here in my area supplied the good

> nites only the yukky green diapers. I found a supply

> store in Nashville (100 miles away) who carry them

> and they ship 8 cases a month to me VIA UPS. Until a

> few weeks ago I was having to buy them at Wal-Mart

> because I was under the impression nnone would

> supply them. Just goes to show you how getting on

> the phone for a while will pay off.

> What we do to help our kids is amazing. We are not

> only the Mom but also the nurse, secretary,

> advocate, maid, medical advisor, speech therapist,

> physical therapist, occupational therapist, baby

> sitter, teacher and very personal friend. Man! Are

> we under paid or what!!! lol I think I will go on

> strike for more wages. Do you think anyone would

> notice. Yeah, I think someone would well

> actually two people........Hannah and

> .........they would notice because they need

> me as I need them to get through each day. To see

> their beautiful smiling faces looking up at me every

> day gets me through the day and night and makes me

> appriciate it a little bit more. That smile I see

> from ear to ear is well worth the under paid job I

> some how fell into here.

> Pam mom to identical twins Hannah (DS) and

> (DS-ASD) age 7

>

> charlyne1121@... wrote:Hi All,

> I want to welcome Ann, Ruth and Diane. I am so bad

> with names, ask a, I

> hope I didn't miss anyone. I was only away for a few

> days but it took me 2

> days to get through all the posts, yikes. I have a

> nine yr. old son with DS

> and OCD. He doesn't have autism but whatelse I may

> never know, hence the ?

> mark. He isn't exactly the typical DS. Zeb has very

> good speech and excells

> in the social area, is stubborn beyond words and has

> mood swings, he has many

> sensory issues, not trained at night and talks to

> his stuffed animals like

> they are real. Zeb lines everything up in the house

> but is partial to video

> tapes and stuffed animals. Many days he talks to me

> through the stuffed

> animals.I haved learned more from this group than I

> have time to tell, not to

> mention the support and friendship. Ruth, you

> mentioned what other tests to

> ask for, get an audiology workup. I just had Zeb

> tested, again because of the

> info from this group, he is hearing impaired. I

> would have never thought he

> couldn't hear well and neither would the ped. Ginny,

> Tinky Winky is part of

> our family too, except Zeb calls him or her Dinky.

> He talk to it like it is

> real and do we get the looks when we are out. I have

> tried to limit taking

> the animals out with us but many times it's the only

> way I can get him out of

> the house. We all pick our battles. Irma, I recently

> found out I could get

> free diapers through medicaid, again from this

> group. I had been buying

> goodnights for years. I put the diapers on and

> changed the routine, no

> goodnights, this will not work. Zeb yells because he

> wants the pullups and

> shreds the things everywhere. I can relate to the

> dark underwear. Donna, I

> was stunned to read your story about the sitter. I

> have a few stories myself

> but try to leave Zeb with my kids if possible. I am

> home for 1 more day and

> off again to work. My other foreign worker came in

> tonight from Japan. She is

> adorable, very quiet and scared to death. She

> volunteers with kids with

> disabilites in her country but seeing Zeb in true

> form has her somewhat

> nervous. I had to move her living quarters to a

> fair, so not to loose the

> location, so she is staying in my guest room for

> tonight. I will be up half

> the night worrying that Zeb with sneak into her bed.

> She has no lock on the

> door.The neurologist started Zeb on Topomax and I am

> incresing the dosage

> each week to help with the mood swings. I have just

> started to see a slight

> improvement but it just could be the week. Time will

> tell. Our heat wave has

> finally ended here and hopefully I will have

> business this weekend. , I

> will be thinking of JJ and hoping he gets through

> the surgery ok. Zeb also

> needs his tonsils out but I haven't scheduled it yet

> with work and fear. I

> had to laugh about your looking forward to camp

> already, glad you were able

> to enjoy the break. School starts the day after

> labor day and I am a nervous

> wreck this year. The attorney has filed 3 state

> complaints in the last 2

> weeks and the spec ed battles just continue. Zeb

> will be in the reg. 4th

> grade classroom with and aide but I recieved a

> letter a few weeks ago telling

> me that he will be there with a spec ed teacher and

> she will be his teacher.

> I am expecting Zeb to be given a separate program in

> the classroom rather

> than him really being included. I am not too happy

> but at this point there is

> nothing I can do. I have and independant ed

> consultant coming in the 2nd week

> to monitor the program. I have such a poor district

> and with their track

> record so far the attorney agrees something isn't

> right but our hands our

> tied. I am not looking forward to school starting! I

> am keeping the attorney

> on retainer for this schoolyear. Thinking of all of

> you and miss the nightly

> read. Sorry this was sooo long.

> Charlyne

> Mom to Zeb 9 DS/OCD ?

>

>

> [Non-text portions of this message have been

> removed]

>

>

>

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[Guest guest]

In a message dated 8/21/02 10:45:28 PM Eastern Daylight Time,

mashawnag@... writes:

>

>

>

>

>

> this what weve been doing for years, but i think its

> different in didfferent states. shawna.

> --- Pam Houser <p_houser37@...> wrote:

> >

> > Hi, Just wanted you to know you can get the good

> >

Yes, we get Goodnights delivered monthly, paid for by medical assistance.

My doc writes a prescrip every few months.

Donna