respite

[Guest guest]

a:

Thanks for responding and to all others, too....yes, we do have respite

services, but it's one thing to be approved for services and another thing to

actually have them be available when you need them!! I can't just call the

same day or even the day before to tell them I need them!

I have missed many a baseball game and other activities the other two boys

are into, simply because no one was available to come out! This is why I am

hoping with the foster care money I have been approved for, that I will now

have the freedom and flexability to hire who I want, when I want....like my

neighbor's teenage daughter who has lots of energy to keep up with .....I

may even take him to the " drop off " daycare that he attends now....just more

often if I have the money available soon.....they are open till 1000 at night

and till midnight on the weekends....hope I can last until the funds come in!

Thanks for suggestions.......

[Guest guest]

,

I schedule my respite on the same days every week, a month in advance so

that I can plan my life around it. It's never a spur of the moment thing. I

always know I have Tuesday and Friday PMs and occasional Saturdays respite.

When Brook is off of school for Inservice days or school breaks I schedule

respite for those too. This way if I need to make an appointment or whatever

I know when I'll be available. I always have the same person because she is

very good with Brook and I have had her for almost 5 years. She is getting

older 72yrs and plans to keep working a few more years. I now it will be

hard getting some one new. Hope this helps.

Marisa

[Guest guest]

Donna And ,

It's so heartwarming to hear about all your great kids. They really can

be lifesavers . My 13 yr old son has been babysitting for me too. I have had

to be careful not to put too much responsiblity on him because I also have a

2 1/2 year old daughter.

I also bought a cell phone last year so that he could reach me in case of any

problems. Now that Brook has had seizures again, I haven't left him in

charge and will probably wait until I feel more comfortable that he won't

have a seizure while I''m gone.

Glad to hear Maddie is doing better, I hope you get to the bottom of what

is going on with her. W'ere leaving for Italy tomorrow and Brook is going to

summer camp while we're gone. I am anxious about it, but I think everything

will be fine. Well I have lots to do. Take Care Everyone,

Marisa

[Guest guest]

In a message dated 6/10/00 2:41:35 PM Eastern Daylight Time, poggim@...

writes:

<< W'ere leaving for Italy tomorrow and Brook is going to

summer camp while we're gone. I am anxious about it, but I think everything

will be fine. Well I have lots to do. Take Care Everyone,

Marisa >>

WOW Marisa!!!!! Good for you!!!! I hope you have a fabulous time and I'm

sure everything will be fine at camp!!!!!! Enjoy all that great Italian

food!!!

Donna

[Guest guest]

laura, i am so looking forward to that dropoff daycare......lolol they are

going to have fun with our three..........heheeh shingles will be popping off

roof and foundation splittign.......lolol

[Guest guest]

marisa, i am just curious, your respite provider is 72 years old.......is

brook not active like in running and hiding ect........if shes able to chase

and keep up? if she is that is wonderful.....i was just curious!!! i dont

know any 72 yr old who could keep up with ashton..........course she is a

wild one......olo like her mommy leah

[Guest guest]

I wasn't given a choice because Hawaii doesn't have very many qualified respite

workers, and they were all taken. It's really hard to find someone I trust.

There is a plus to this though. We may actually start using our full $100 a

month. At minimum wage, it comes to about 19-1/2 hours a month. 's Sunday

school teachers (good friends of ours) have volunteered to take both boys for

alternating Friday nights. They have a 5 year old daughter (only child - so she

needs a little socialization too - we schedule play dates with them). She gets

along really well with (that's the 5 year old and the mom - mom has worked

with DS and autistic kids but is her first dual diagnosis) and Dad gets

along really well with . It'll be nice when DH gets done playing games

with the Navy SEAL Team and we can start this. Plus it's at her house, so we

can take them there and have time at home, so we don't have to spend

money.....as she put it, we can DO IT on the dining room floor if we want...I

asked her what IT is!!

Loriann

[Guest guest]

Well, we had a pretty good time. We had a little traffic, so we didn't get

there as early as I would have liked. We went to the Christian bookstore, but

there wasn't nearly enough time to look around before we had to buy our ticket.

We saw Space Cowboy, and it was so funny. Sad ending though, I won't ruin it

for anyone else. Stars Clint Eastwood and Tommy Lee (and some others).

Afterwards we went to Price Busters for 30 minutes. That place was so jam

packed that wasn't enough time either. Maybe next time we'll just use our time

to wander around stores (without have to say, " put that down, " " ,

leave that alone, " " Stay by the cart, , " etc.etc.etc. I did buy a couple

baby spoon/fork sets, Barney and Dr. Seuss, and a pillar candle holder.

When we picked up the boys, my friend told me had been really testing her.

There was about a 45 minute span where he hit Vickie (the 5 year old daughter),

my friend and her husband. This doesn't really sound like him, so he must have

been over tired. She did tell me that afterwards, he lay down on the couch and

petted Jake (their Golden Retriever), who was laying on the floor next to him,

and fell asleep. She always tells me the positive stuff, so this must have

really gotten to her. She said she told me because she lost her cool a little

and yelled at him. She had put him in the corner for hitting her husband, he

wouldn't stay, so she stood right behind him (I do this too) and he promptly

stepped on her foot, right on the middle. She wanted to tell me because she had

yelled at him. But she had other good things to say. I always hate it when

they only tell you the bad stuff.

They were both out cold when we got there at 10:30.

And then I nudge DH this morning to get up with me with the kids (we usually

alternate) and he told me he had planned on getting up until he saw the kitchen

last night. OF course I took this as my *punishment* for not cleaning up the

kitchen (when he was off all day). Not a happy camper this morning. He might

go yard sale-ing, so that might make up for it.

Loriann from Hawaii

Wife to Dewight

Mom to , 10 years old, DS-ASD, ADHD, ODD

And , 13 months old

[Guest guest]

In a message dated 8/19/00 1:39:55 PM Eastern Daylight Time,

hsmyangel@... writes:

<< Well, we had a pretty good time. We had a little traffic, so we didn't

get there as early as I would have liked. We went to the Christian

bookstore, but there wasn't nearly enough time to look around before we had

to buy our ticket. We saw Space Cowboy, and it was so funny. Sad ending

though, I won't ruin it for anyone else. Stars Clint Eastwood and Tommy Lee

(and some others). Afterwards we went to Price Busters for 30 minutes.

That place was so jam packed that wasn't enough time either. Maybe next

time we'll just use our time to wander around stores (without have to say,

" put that down, " " , leave that alone, " " Stay by the cart,

, " etc.etc.etc. I did buy a couple baby spoon/fork sets, Barney and Dr.

Seuss, and a pillar candle holder.

>>

So glad you enjoyed some time for just you! I am going to do that one of

these years too! LOL Sounds like you have found good respite... the

positives are always good to hear. :-)

Gail

[Guest guest]

Jeannie,

What ever happened with your respite? Let me know how it goes.

Marisa

[Guest guest]

In a message dated 8/20/00 1:59:33 PM Pacific Daylight Time, poggim@...

writes:

<< What ever happened with your respite? Let me know how it goes >>

Marissa,

I cannot believe I forgot to post...we got 32 hours a month to be reviewed in

6 months...asking for pullups...behavioralist...got him institutionally

deemed (?) so he can get CalOptima until Americans benefits kick in, got a

respite company to use some of my respite time, will spilt the time with one

of my friends who will also watch Mark.

As for the depakote, he takes the sprinkles 1 in the morning, 1/2 0.1 mg of

clonidine am, and 0.5 mg of risperdal in am. Lunch is the other half of

clonidine, bedtime is 2mg risperdal, 2 depakote sprinkle tabs. What do you

think of this> Any input anyone?

Thanks!

Jeannie

Mom to Mark and !

[Guest guest]

Jeannie,

All I can say is that Brook is taking 2 sprinkles in the AM and 2

sprinkles in the PM. That's 500mg a day.

But when he was only 2 years old he was taking 625 mg a day or 5

sprinkles a day. In other words this time around he is on a really low dose,

but in the past it was a lot higher. It was higher simply because he needed

that much to control his seizures.

Marisa

[Guest guest]

In a message dated 08/20/2000 4:09:29 PM Central Daylight Time,

JVal987@... writes:

<< As for the depakote, he takes the sprinkles 1 in the morning, 1/2 0.1 mg

of

clonidine am, and 0.5 mg of risperdal in am. Lunch is the other half of

clonidine, bedtime is 2mg risperdal, 2 depakote sprinkle tabs. What do you

think of this> Any input anyone?

>>

How much does Mark weigh?

Maureen

[Guest guest]

In a message dated 8/21/00 6:33:41 AM Pacific Daylight Time, MRASMUS@...

writes:

<< How much does Mark weigh? >>

Maureen, Mark weighs 50 lbs and is 48 " tall.

Jeannie

Mom to Mark and !

[Guest guest]

In a message dated 8/21/00 10:10:42 AM Central Daylight Time, JVal987@...

writes:

<< Maureen, Mark weighs 50 lbs and is 48 " tall. >>

Jeannie, I was just curious because weighs about 50 pounds and is on

much less medicine. Maybe that's the problem. Although we've been

increasing her Risperdal, she's getting no better, yet she did wonderfully

well on a vry low dose for three months. I'm going to ask her psychiatrist

if we can add another drug like Buspar or one of the SSRIs. Guess we just

haven't found the right combo yet. Keep us posted on Mark's progress on his

cocktail!

Maureen

[Guest guest]

>and a masterpiece (my husband objected to me calling him a piece

>>of work!)

>>

Pat, LOL And aren't they all.

& Garry, parents of (10 ds), (9 ds/g-tube), JJ (7

ds/autism/celiac), (6 ds/ADHD/Celiac), and Esther (3 ds). All adopted.

[Guest guest]

pat , respite is great in nj. is your child signed up with ddd ? it is state

wide so if you are in jersey you should be able to get 30 hours a month with

just the ds dx my daughter even got a voucher last summer from them for extra

respite due to his behavior problems check my post for yesterday for more

details on respite in nj caroledivision of developmental disabilities is ddd i

forget everyone might not know that one the number is in the phone book.

patricia.mcgovern@... wrote:

OK - I am bummed! (Happy for all of you, of course, but... where's my

respite? Now I sound like my 2 yo ! :-)) Is anyone getting respite in NJ?

There is respite available in my area but it is through a respite coop.

You take care of other's kids and then bank hours for your own. This is

difficult if you work!

If anyone knows who I can contact (maybe on a federal level?) for respite

that would be great. Also was the ASD diagnosis required or was DS enough?

Pat - mom to - 6 yo DS, ADHD and behavoirs similar to autism, and

, 2.5 and a masterpiece (my husband objected to me calling him a piece

of work!)

eGroups Sponsor

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

[Guest guest]

> I don't get respite either! Of course, I've never inquired about

it or asked for it. I'd like to know how it works.

OK - I am bummed! (Happy for all of you, of course, but... where's my

> respite? Now I sound like my 2 yo ! :-)) Is anyone getting respite

in NJ?

> There is respite available in my area but it is through a respite

coop.

> You take care of other's kids and then bank hours for your own.

This is

> difficult if you work!

>

> If anyone knows who I can contact (maybe on a federal level?) for

respite

> that would be great. Also was the ASD diagnosis required or was DS

enough?

>

> Pat - mom to - 6 yo DS, ADHD and behavoirs similar to

autism, and

> , 2.5 and a masterpiece (my husband objected to me calling him

a piece

> of work!)

[Guest guest]

for nathan the DS was all he needed actually allthey need to be is MR in

Iowa, you fill out all these papers and wait and wait, and then they get

approved for an MR waiver and HCBS or something like that, waiver, then you

have to choose a company and fill out all their parper work, and then the

company has to find someone who is capable and comfortable and that your are

comfortable with, its a very long devastating process but once its finally

going whew, one can relax a little.shawna.

[Guest guest]

Pat,

When you are filling out your forms for respite make sure that you include

all of the difficult situations that you face on a daily basis, as well as

how difficult it is to have any time with spouse or other children. I have

found that I have to put everything in or they really don't get it. You have

to tell them that your child cannot feed himself, is not toilet trained, must

be supervised at all times, etc. I'm using my own child as an example. You

must tell them how hard it is. Be prepared to exaggerate!! Talk about

self-injurious behaviors, aggressive behaviors, spouse traveling frequently,

give a % is applicable, talk about medical problems and how much time from

school is lost due to this and the stress of it all. Talk about your mental

health needs. They don't assume any of this from your child's diagnosis

necessarily. Good Luck,

Marisa

Mom to Miles 13, Brook 10 Ds-ASD and Genevieve 3yrs

[Guest guest]

I don't know, but this thought just clicked in my head. Do y'all know if

theirs a a month for any awarness? I just know that theirs a Autism

Awarness month, but I don't know about the other months.

________________________________________________________________________________\

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[Guest guest]

I don't know, but this thought just clicked in my head. Do y'all know if

theirs a a month for any awarness? I just know that theirs a Autism

Awarness month, but I don't know about the other months.

________________________________________________________________________________\

_____

Get more from the Web. FREE MSN Explorer download : http://explorer.msn.com

[Guest guest]

> --- elan214@... wrote:

> > Hi! Does anyone have any ideas out there about who I

> > could get for a few days

> > a week to give me a little break? Money no object?

> > Well, money an object,

> > but perhaps not as important right now as my mental

> > health.

Hi Ellen,

Hang in there during these tough times! In addition to others' terrific

suggestions, I might add: Does have any classification that would

make her eligible to receive free or subsidized respite services? Since she

has multiple diagnoses, including Aspergers, does that entitle her to

services within the MR/DD system because Aspergers is a pervasive

developmental disorder? Since she is unable to go to school and to function

without 24 hour supervision, does she fit in the SED (Seriously Emotionally

Disturbed) classification? This is a NY label. The labels are not

flattering, but that's probably the least of your concerns right now. Does

she have a case worker or some advocate that can help you navigate the

system? If not, can you find one?

Another thought: Having worked on adol psych units for years, the " psych

techs " or milieu therapists, or nurses aides on these units are often young

college or grad school bound students who need both the money as well as the

training in the field. (if it's a univ affiliated hosp, they get free

tuition, so you're going to find the aspiring college students here). They

work with kids like everyday and some of them are excellent and

others are not. You would want to find someone with a few years experience,

who has that balance of compassion and firmness to set limits, and perhaps

some training in physical holding (if necessary). Whoever you get, please

do interview them carefully---it tends to be a " transient " population, like

daycare employees, so you see the whole range.

take care,

Aureen Wagner, Ph.D.

[Guest guest]

PS: Ellen, I forgot to add: Calmness, someone who exudes calmness, can keep

their head on their shoulders, and is not easily frazzled will be important

in your interview criteria.

Re: Respite

> > --- elan214@... wrote:

> > > Hi! Does anyone have any ideas out there about who I

> > > could get for a few days

> > > a week to give me a little break? Money no object?

> > > Well, money an object,

> > > but perhaps not as important right now as my mental

> > > health.

>

> Hi Ellen,

> Hang in there during these tough times! In addition to others' terrific

> suggestions, I might add: Does have any classification that would

> make her eligible to receive free or subsidized respite services? Since

she

> has multiple diagnoses, including Aspergers, does that entitle her to

> services within the MR/DD system because Aspergers is a pervasive

> developmental disorder? Since she is unable to go to school and to

function

> without 24 hour supervision, does she fit in the SED (Seriously

Emotionally

> Disturbed) classification? This is a NY label. The labels are not

> flattering, but that's probably the least of your concerns right now.

Does

> she have a case worker or some advocate that can help you navigate the

> system? If not, can you find one?

> Another thought: Having worked on adol psych units for years, the " psych

> techs " or milieu therapists, or nurses aides on these units are often

young

> college or grad school bound students who need both the money as well as

the

> training in the field. (if it's a univ affiliated hosp, they get free

> tuition, so you're going to find the aspiring college students here).

They

> work with kids like everyday and some of them are excellent and

> others are not. You would want to find someone with a few years

experience,

> who has that balance of compassion and firmness to set limits, and perhaps

> some training in physical holding (if necessary). Whoever you get, please

> do interview them carefully---it tends to be a " transient " population,

like

> daycare employees, so you see the whole range.

> take care,

> Aureen Wagner, Ph.D.

>

>

>

>

>

>

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>

>

>

[Guest guest]

I make a salve with infused chickweed (Stellaria media). It definitely

helps itching.

May

Marcelle wrote:

> I just saw an ad on TV for a lotion that stops that winter itching,

> especially

> around the ankles. The lotion's name was Respite. Before I rush out

> and buy this product, can anyone tell me what ingredients might be

> helpful

> in stopping winter itching? Maybe I can make my own and won't need to

>

> buy theirs! ;-)