Re: We might be getting care hours for h!

[Guest guest]

hi Jeni

i think this is great for annah i started with cares when i was about 12 also

a did what you are doing buldin it up gradualy hope things work out for her as

well as mines have

love lauramechelle

Jenifer Woody <mom2armybratz@...> wrote:

I think I should clarify what we do and do not expect, because we

would absolutely NOT throw her in with no safeguards or assistance. First, she's

12! I am not quitting on her and I will not expect her assistants to take over.

This is going to be something that we have a few days a week (for now) so that

she can have some autonomy from me like any kid her age would. Also, in the

beginning her assistants won't even be performing the extremely personal tasks

(toileting) for her. That will wait until she has developed some level of

comfort and wants to train an individual. It will go at her speed!

Second, while we will hand over a lot of the management jobs, we will always be

in the background to make sure that h is taking care of her assistants and

they are doing what she needs done. We will have to make sure now that h

learns the right balance between " I am the employer " and taking advantage of her

assistants (she just *might* try to get them to do her math homework! *LOL*) We

will be right by her every step of the way.

I personally feel like we are taking the right steps to ensure that when she is

an adult she will be well prepared to handle management on her own without being

thrown into the deep end at that time. She can learn it a little at a time but

still be completely involved in the process. This is a way to enable and empower

her! I think it would be cruel and foolish to baby and coddle her until she's an

adult and then expect her to figure it all out for herself!

Love and Hugs

Jeni

Re: We might be getting care hours for h!

PCA management is hard enough for adults to manage. Throwing a 12

year old into the deep end of that is cruel and foolish.

Most sma-ers are smart beyond their years but don't wreck a kids

childhood with the stress of employee management.

>

> Jeni,

>

> I personally think two different people more her age will better

> prepare her for the realities of attendant management.

>

> I recommend two because then there will usually be a non-mom

backup,

> and it will teach h how to schedule around her own and her

> attendants' needs. This will also help decrease person-specific

> dependence. It's scary to hire new people after I'm so used to

> working with someone(s) for a long time, but the reality is that

> attendants are fairly high turnover. I have seven regular

attendants

> who all communicate with each other by e-mail and phone, keeping me

> in the loop, about shift swapping, substituting, and coordinating

> holidays and vacations. It's important to keep people happy in

this

> relatively low-paying job. My longest regular attendant is Carl

(8+

> years). My newest is Chaim (2 months). Xarick has been working

for

> me for 4 or 5 years, but it's on and off because he travels and

lives

> part-time in Tennessee. This is perfect because he always ends up

> back in California after the beet harvest and right when I need

> holiday substitutes in November and December. Attendants'

schedules

> tend to change 2-3 times a year whether they're students or not.

>

> I recommend younger people because attendant-client relationships

> usually work out better and last longer when the duo have more in

> common. I hire artists, punks, political activists, anarchists,

> foodies, environmentalists, writers, smart-asses, etc. The younger

> ones may indeed be more difficult to manage, but better for h

to

> learn how to develop this required management skill while you're

> around to teach her and do damage control.

>

> Here is an ad I use:

>

> Seeking Personal Assistant(s)

>

> Available in Late May

> Mondays and/or Tuesdays - 7:30 a.m. (3 - 5 hours)

> Sundays - 8:30 p.m. (2 - 3 hours)

>

> I'm an active 41 year old woman who lives with my partner and 2

> cats. I need assistance with most aspects of my personal care,

> cooking, household chores include home maintenance and light

repairs,

> and administrative tasks. I also need some who can drive me in my

> van. There may be opportunities to travel with us. I use a power

> wheelchair and numerous home health gadgets. Our home is 5 blocks

> from the N. Berkeley BART Station, a mile west of UCB, and on the

51

> & 88 Bus lines.

>

> I have recently retired as a disability benefits advocate and have

re-

> launched my career as a writer. When I'm not working, I enjoy

> spending time with my partner, friends, and family. I like

cooking,

> listening to music, writing, playing games, watching movies,

beading,

> drawing, reading, computer geeking, gardening, chatting over tea,

and

> such. I am a responsible employer with 25 years of experience

> hiring, training and working with my assistants.

>

> Personal Care

> -Bathing (Bed Bath)

> -Bathrooming (Bedpan & Catheter)

> -Dressing

> -Transferring (55 lb. Cradle Lift - Yes, I'm really small)

> -Occasional Feeding

> -Grooming

>

> Household Stuff

> -Cooking

> -Dishes

> -Making Bed

> -Tidying Up

> -Plant Care

> -Sweeping/Mopping

> -Errands

> -Driving My Van (I strongly prefer you can drive)

> -Cat Care

>

> Clerical (Minimal)

> -Filing

> -Bill Paying

> -Correspondence

>

> Requirements

> -Male or Female

> -Comfort with Personal Care

> -Ability to Readily Lift 55 lbs.

> -Prompt and Reliable (sick days must be very rare, though,

> occasionally swapping shifts with other assistants is fine)

> -Must Be Able to Follow Directions

> -Good Sense of Humor

> -Detail-Oriented Quick Learner

> -Strong Communication Skills

> -Fluent in English

> -Valid Driver's License with Good Record

> -Social Security #

> -Good References

> -I am willing to Train/No Attendant Work Experience Necessary

> -No perfume

> -No homophobes please

>

> Rate of Pay:

> $12 Training

> $12.50 Starting (negotiable based on experience)

> Regular Raises

> Medical/Dental/ Vision Benefits for working 38 hrs./month After 3

> Months

>

> E-mail resume or paragraph about yourself, plus references: Alana -

> alrt@...

>

__________________________________________________________

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[Guest guest]

Jeni,

First of all, I think it is great that you are getting some help with h.  As

hard as this process may be, she needs you to be her Mom, not her full-time

caregiver.  Getting home health-aides was one of the best things my Mom ever did

for me.  Secondly, I think it is fantastatic that you are letting h be so

involved with this process.  When my Mom let me have a say in my home health

care, I gained an enormous amount of self-esteem and I finally felt like I had

control over something that matter when so much was being taken away from me by

my SMA.  This also prepared me for what I would have to face all through college

and my adult life when dealing with my needs.

As far as what age group I would recommend, I think it really depends on the

person's attitude.  When I was a teenager, the best home health aide I ever had

had a son that was my age but she never, ever tried to act like my Mother.  She

was responsible and mature, but I also felt as though she was a friend even

though she was old enough to be my Mom.  On the other hand, I had another woman

who helped me at school when I had to go to the bathroom that was the same age

as my home health aide who I could not stand.  She tried to act like my Mother

and told me what to wear, say, act, etc.  These days, I only hire people my age

or a bit younger because I've found that older women do not respect the fact

that I am an adult who is married, a mother myself, and a full-time employee.

Anyhow, I think the whole thing is great.  I do have one word of advice for you,

though.  When these women begin their trial periods, I'd recommend that you pull

them aside for a minute and discuss a few things with them.  First of all, no

matter whether they are joking or not, they should never, ever say anything

about h's weight or how heavy she may or may not be to lift.  I developed an

eating disorder in high school after constantly hearing from aides at school how

hard it was to lift me.  I got down to 75lbs and was severly anorexic for my

height.  Even though you may think you'd notice these things with h, it was

very easy for me to hide it from my Mom and my Mom watched me carefully.  It

wasn't until my Sophomore year of college that I came to grips with my

weight issues and got some help.  Secondly,  what she wants to wear is what she

wants to wear and how she wants to do hair/make-up is her choice (as long as

it is okay with

you from a Mom standpoint ).  My aide at school called my Mom and asked her

to have me wear sweat pants every day to school so that it was easier/faster for

her to dress me.  My Mom promptly replied that I would wear whatever I wanted

and she could deal with it.

Take care!

 

Milinovich, SMA Type I

Wife to , Mommy to - 13 Months Old!

http://www.myspace.com/kindrana 

http://s174.photobucket.com/albums/w107/boramir/?start=0

 

We might be getting care hours for h!

We aren't positive yet, but there is a good chance that she qualifies for

assistance hours. With the program I will get to help her in hiring and managing

her aides herself. Here's my dilemma...

Part of me wants to hire an older Mom or grandma type so that there is more of a

parental influence there, but part of me knows that when I was h's age I

would NOT have wanted someone " old " hanging out all the time. So in that

respect I was thinking about a college student type who would be closer to a

peer than a " Mom. " I want to give her some freedom and autonomy, but I don't

want to give her enough of that rope to hang herself with.

Am I making even the slightest bit of sense? 

I guess the real question is: How much freedom do I give her at 12? I don't know

how much I would give her if SMA were not an issue. I can't take my mother's

advise or h would be with a babysitter until she is 35! So I turn to y'all

;0) You haven't steered me wrong for the past 9 or 10 years, so I'm guessing

I'll get some great words of wisdom in this situation, too!

 

 Love and Hugs

         Jeni

[Guest guest]

Thanks for your input ! I think maybe *I* need to work on not saying

anything about h's weight. I never thought about it the way you put it, and

we all joke about being heavier, etc. I think I'll be extremely careful now!

We've been through the sweatpants/elastic waist requests. It made me furious

that they thought she should dress like a toddler! h is currently a limited

too addict and the only restrictions I put on her clothes are the same that I'd

put on any 12 year old. Basically, we cover our butts up and dont dress like

tramps *LOL* I practice what I preach, too, though ;0) Other than that, h

picks her stuff out and I just deal with it if it is a little more difficult. I

remember wanting to be cool when I was 12!!!!!

I'm off to the school to see Miss bug right now actually. We are still not

letting them train anyone else, so a few times a day I get to go visit ;0)

I hope your family is doing well. The last pics I saw of Miss were

amazing. It is hard to believe how big she is now!!!!

 

 Love and Hugs

         Jeni

                              

We might be getting care hours for h!

We aren't positive yet, but there is a good chance that she qualifies for

assistance hours. With the program I will get to help her in hiring and managing

her aides herself. Here's my dilemma...

Part of me wants to hire an older Mom or grandma type so that there is more of a

parental influence there, but part of me knows that when I was h's age I

would NOT have wanted someone " old " hanging out all the time. So in that

respect I was thinking about a college student type who would be closer to a

peer than a " Mom. " I want to give her some freedom and autonomy, but I don't

want to give her enough of that rope to hang herself with.

Am I making even the slightest bit of sense? 

I guess the real question is: How much freedom do I give her at 12? I don't know

how much I would give her if SMA were not an issue. I can't take my mother's

advise or h would be with a babysitter until she is 35! So I turn to y'all

;0) You haven't steered me wrong for the past 9 or 10 years, so I'm guessing

I'll get some great words of wisdom in this situation, too!

 

 Love and Hugs

         Jeni

[Guest guest]

I wish my mother had been like h's, to be quite honest. I was never

allowed to be that involved in my care and I think that would've helped

immensely in my adult years.

Amy

Re: We might be getting care hours for h!

PCA management is hard enough for adults to manage. Throwing a 12

year old into the deep end of that is cruel and foolish.

Most sma-ers are smart beyond their years but don't wreck a kids

childhood with the stress of employee management.

& gt;

& gt; Jeni,

& gt;

& gt; I personally think two different people more her age will better

& gt; prepare her for the realities of attendant management.

& gt;

& gt; I recommend two because then there will usually be a non-mom

backup,

& gt; and it will teach h how to schedule around her own and her

& gt; attendants' needs. This will also help decrease person-specific

& gt; dependence. It's scary to hire new people after I'm so used to

& gt; working with someone(s) for a long time, but the reality is that

& gt; attendants are fairly high turnover. I have seven regular

attendants

& gt; who all communicate with each other by e-mail and phone, keeping

me

& gt; in the loop, about shift swapping, substituting, and coordinating

& gt; holidays and vacations. It's important to keep people happy in

this

& gt; relatively low-paying job. My longest regular attendant is Carl

(8+

& gt; years). My newest is Chaim (2 months). Xarick has been working

for

& gt; me for 4 or 5 years, but it's on and off because he travels and

lives

& gt; part-time in Tennessee. This is perfect because he always ends up

& gt; back in California after the beet harvest and right when I need

& gt; holiday substitutes in November and December. Attendants'

schedules

& gt; tend to change 2-3 times a year whether they're students or not.

& gt;

& gt; I recommend younger people because attendant-client relationships

& gt; usually work out better and last longer when the duo have more in

& gt; common. I hire artists, punks, political activists, anarchists,

& gt; foodies, environmentalists, writers, smart-asses, etc. The

younger

& gt; ones may indeed be more difficult to manage, but better for h

to

& gt; learn how to develop this required management skill while you're

& gt; around to teach her and do damage control.

& gt;

& gt; Here is an ad I use:

& gt;

& gt; Seeking Personal Assistant(s)

& gt;

& gt; Available in Late May

& gt; Mondays and/or Tuesdays - 7:30 a.m. (3 - 5 hours)

& gt; Sundays - 8:30 p.m. (2 - 3 hours)

& gt;

& gt; I'm an active 41 year old woman who lives with my partner and 2

& gt; cats. I need assistance with most aspects of my personal care,

& gt; cooking, household chores include home maintenance and light

repairs,

& gt; and administrative tasks. I also need some who can drive me in my

& gt; van. There may be opportunities to travel with us. I use a power

& gt; wheelchair and numerous home health gadgets. Our home is 5 blocks

& gt; from the N. Berkeley BART Station, a mile west of UCB, and on the

51

& gt; & 88 Bus lines.

& gt;

& gt; I have recently retired as a disability benefits advocate and have

re-

& gt; launched my career as a writer. When I'm not working, I enjoy

& gt; spending time with my partner, friends, and family. I like

cooking,

& gt; listening to music, writing, playing games, watching movies,

beading,

& gt; drawing, reading, computer geeking, gardening, chatting over tea,

and

& gt; such. I am a responsible employer with 25 years of experience

& gt; hiring, training and working with my assistants.

& gt;

& gt; Personal Care

& gt; -Bathing (Bed Bath)

& gt; -Bathrooming (Bedpan & Catheter)

& gt; -Dressing

& gt; -Transferring (55 lb. Cradle Lift - Yes, I'm really small)

& gt; -Occasional Feeding

& gt; -Grooming

& gt;

& gt; Household Stuff

& gt; -Cooking

& gt; -Dishes

& gt; -Making Bed

& gt; -Tidying Up

& gt; -Plant Care

& gt; -Sweeping/Mopping

& gt; -Errands

& gt; -Driving My Van (I strongly prefer you can drive)

& gt; -Cat Care

& gt;

& gt; Clerical (Minimal)

& gt; -Filing

& gt; -Bill Paying

& gt; -Correspondence

& gt;

& gt; Requirements

& gt; -Male or Female

& gt; -Comfort with Personal Care

& gt; -Ability to Readily Lift 55 lbs.

& gt; -Prompt and Reliable (sick days must be very rare, though,

& gt; occasionally swapping shifts with other assistants is fine)

& gt; -Must Be Able to Follow Directions

& gt; -Good Sense of Humor

& gt; -Detail-Oriented Quick Learner

& gt; -Strong Communication Skills

& gt; -Fluent in English

& gt; -Valid Driver's License with Good Record

& gt; -Social Security #

& gt; -Good References

& gt; -I am willing to Train/No Attendant Work Experience Necessary

& gt; -No perfume

& gt; -No homophobes please

& gt;

& gt; Rate of Pay:

& gt; $12 Training

& gt; $12.50 Starting (negotiable based on experience)

& gt; Regular Raises

& gt; Medical/Dental/Vision Benefits for working 38 hrs./month After 3

& gt; Months

& gt;

& gt; E-mail resume or paragraph about yourself, plus references: Alana

-

& gt; alrt@...

& gt;

[Guest guest]

If they feel well enough to work AND don't have a fever it's fine that

they work. We just increase already diligent hand-washing and I ask

that they let me know if they're sick ahead of time...I'll use a

substitute attendant if I'm already run down or sleep deprived. I

don't try to minimize exposure. My immune system is strong. My last

respiratory infection was in May 2000.

>

> Wow that is an awesome website! another question I forgot to ask

last

> night is ­ do you guys let people work when they are sick with

colds/flu?

>

[Guest guest]

I wasn't suggesting throwing h " into the deep end. " Fortunately

Jeni understood my message to be about encouragement and approach in a

mother-daughter team effort, not abandonment.

>

> PCA management is hard enough for adults to manage. Throwing a 12

> year old into the deep end of that is cruel and foolish.

>

> Most sma-ers are smart beyond their years but don't wreck a kids

> childhood with the stress of employee management.

>

>

[Guest guest]

Hi Jeni:

I am a divorced single mom of two girls. One 17 and who is 15yrs old

with sma type 2. As far as hiring aides for annah, I also suggest hiring

younger. My daughter really connects with them much better. Yes the turn over

for aides is great. Also, yes I agree making sure they are doing what annah

needs done, but always being around and " grading " there work will seem like an

insult to them. I have been there and done that. I also thought I could do it

all for . I am 44yrs old and need 2 new knees, had back surgery, and have a

stimulater implanted in my back for the pain in my back from blown discs, from

" lifting " . Again thinking no one can do it like " mom " . These aides are

here for us also. I want to be around to see go to college, and get

married and if she wants have children. As gets bigger her needs change,

and its usually " more " not less. So good luck in recruiting a great aide for you

and your child..........

CHRIS

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

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