help wanted

[Guest guest]

well we have locks on doors and kitchen stuff fridge and cubboards, and

nathan has a vailbed and the bathrrom, non slip mat and handle to hangonto,

we are inatalling those flat faucet handels for sinks and tub since nathan

has such poor FMS and has such a hard t ime turning the round ones. for

life, nathan needs constant suervision, and often have to miss work hours if

HHA is sick or unavailable, or if he is sick which is often. he is too old

for day care, have to take a back pack with a pull up, extra pants and

wipes et transition toys everywhere, oh and we use a wheel chair for

shopping and trips etc he refuses to walk long distances and is tooo heavy

to carry or lift. we are going away tonight and other than family memebers

and hha its practically impossible to find a sitter for him. Lack of sleep

since he sleeps little, restaurants can be a challenge on occasion he os

much better. we usually sit nearer the door, especially at church because we

wont have him screaming or having a fit in church, or any public place. At

the store he may just open a pop and start drinking it. He chokes easily. oh

we use handicap playcard for parking for him because he does on occasion

take off, or may drop and flop and wont walk if too far out. Anytime we have

a new hha or just family we have to go through his machines (cpap, suction,

vailbed) and i have his routines typed up and in his folder to follow as to

not have much of a hard time with him. Or if school is having a horrendous

time they will call us to get him. The eating issues are really hard, he

doesnt chew much and cant handle many textures, he gags or chokes often so i

have a list of food for cuation but he still has to be monitored (usually i

say sit at table with him or eat with him for sitter or hha) becuase even

foods he can eat pretty well he occasionally chokes on. He needs constant

suppervision outside too, he will leave or wander off in a split second!!!!

And doesnt answer when we call out for him. Oh his clothing is adaptable

too, elastic waist, no string shoes usually get skechers) only tshirts he

obsesses with buttons and zippers and strings and is unable to fasten either

due to poor FMS and he is more independent this way too but finding these

types of clothes isnt always easy and they can get pricey. i will probably

think a few more after i send but many on this list have just as many if not

more. good luck shawna.

Help wanted

> Hi,

>

> I am an infrequent poster but an avid listener who could use some help. I

have been going through a really, really ugly divorce for 2 1/2 years now.

We hope to set a trial date soon. Anyway, when I met with my attorney

today, and we were discussing the house, which I hope to keep, he was amazed

by all the things I was describing to him. No tables or breakables, no

lamps, no electrical cords that will chew through, keeping soap,

tissues, etc. out of reach because he'll eat anything, (had to clue him in

to the feces things as well) , limited window coverings (he'll chew them or

pull them down), all these things that are " normal " for me. His next

question was how our life is modified, not just the house, but all of our

activities are modified because of 's special needs. This is where I

need help. What modifications to home living and other activities have you

made?

>

> My ex has a very extravegent lifestyle, both financially and otherwise,

and has been unwilling to provide financial or other support to the the four

children and myself. I know that some expenses are obvious but the hidden

ones are the ones that are killing me. Extra laundry means more utilities,

carpet cleaning constantly, etc. We are trying to provide a contrast that

might make the judge understand a bit of my situation. I have lived in the

" accomodating " mode for so long, I just don't see sometimes the

things we never do or the extra money that is spent.

>

> I would greatly appreciate anyones thoughts and suggestions in these

areas: household accomodations, lifestyle accomodations, financial extras

beyond obvious medical bills.

>

> Anything at all would be helpful and greatly appreciated.

>

> Connie

> Single mom to (9), Austin (7), DS-ASD (7), and (7)

>

>

[Guest guest]

Debbie..

I know that 1999 Grand Champion Lezlee eat mostly vegetables for her

carb source during her challenge.

Cheryl

> [Original Message]

> From: Debbie Holland <debbieholland@...>

> <bodyforlifeegroups>

> Date: 6/5/00 5:58:03 PM

> Subject: Help Wanted

>

> Okay, what do you all think of this? I'm discourgaed with trying to shed

lingering bit of body fat. My goal is 15% and I'm stuck on 19%.

Struggling with hypoglycemia (low blood sugar) and high cholesterol (must

be hereditary... I consume very little, but body must manufacter more than

I consume). I've tried lots of food combinations trying to find the right

one to keep everything in balance, keep muscle gained and lose remaining

BF. What harm would there be in using mostly vegetables in place of carb

intake? That is, instead of a complex carb and vegetable combination like

BFL suggests. I try to use shakes and soy protein (always with water)

mostly for protein source. Have cut back on animal protein and dairy as

sources.

>

> Any advice welcome. Thanks in advance.

>

> Debbie

>

--- Cheryl Cundick

--- cdautah@...

[Guest guest]

Debbie,

I just read a magazine article about that type of diet, getting carbs from

vegetables. Something similar to the Atkins diet only they recommend lower

fat meats and fish. They also said that an extremely low carb diet is OK for

two weeks at a time but our body will need to recuperate for a few weeks too.

Remember that carbs are the ONLY fuel your brain uses so you don't want to

deplete for too long or you will start to get rummy. They also suggested a

metabolism booster during this time like Phen free or Hydroxycut, to give you

needed energy during the day that carb depleting saps. They said to no go

lower than 50 carbs a day. This article suggested Twinlabs version of the

Meal replacement powder called Fuel Plex Lite. It had very few carbs but all

the rest was the same as Myoplex. Most GNC stores have this. They said to

eat six meals with three being whole food. They had a great egg white omelet

with veggies for breakfast. It sounded good to me. I might try this myself

for two weeks.

~Laury

[Guest guest]

I think you'd do fine with vegatables as your carb some of the time, but if

you look at the nutritional facts on the back of a bag of frozen veggies,

you'll have to eat A LOT of broccoli to get a decent carb intake. Broccoli,

and most other veggies, have like NO carbs to them at all.

-

In a message dated 05-Jun-00 19:58:42 Eastern Daylight Time,

debbieholland@... writes:

<< Okay, what do you all think of this? I'm discourgaed with trying to shed

lingering bit of body fat. My goal is 15% and I'm stuck on 19%. Struggling

with hypoglycemia (low blood sugar) and high cholesterol (must be

hereditary... I consume very little, but body must manufacter more than I

consume). I've tried lots of food combinations trying to find the right one

to keep everything in balance, keep muscle gained and lose remaining BF.

What harm would there be in using mostly vegetables in place of carb intake?

That is, instead of a complex carb and vegetable combination like BFL

suggests. I try to use shakes and soy protein (always with water) mostly for

protein source. Have cut back on animal protein and dairy as sources.

Any advice welcome. Thanks in advance.

Debbie >>

[Guest guest]

Hi Gloe, How are you doing on your eating plan? Are you still following the

one recommended by your doctor? Best wishes from one of your enrollees,

Leaner.

[Guest guest]

Debbie,

Check out the latest issue of Muscle & Fitness magazine. There is an

article in there about the " Greenwich Diet " . It is similar to the Atkins

diet with the exception of using only lean meats and not all that fat. There

is also an article about a two week carb deplete diet that uses the Fuel Plex

Lite shakes. They suggest that you only carb deplete for 2 weeks at a time

since carbs are the ONLY fuel your brain uses. But they had daily menus in

there which sounded great.

~Laury

[Guest guest]

Debbie,

Sounds like your doctor has you on the " Sugar Busters " diet. I read the

book and incorporated it into my BFL meal plans. Dropped fat like crazy.

~Laury

[Guest guest]

In a message dated 2/6/2003 1:59:27 PM Eastern Standard Time,

ccurran1@... writes:

> His next question was how our life is modified, not just the house, but all

> of our activities are modified because of 's special needs. This is

> where I need help. What modifications to home living and other activities

> have you made?

Connie,

First of all, I am sorry you are having to go through this!! Ok, we've

had to put in central air in a 6 bedroom old stone house because we can't

have open windows (she even has ripped holes in our screens to get out) and

she doesn't sweat. We never would have done it prior to Maddie because

this house doesn't even get hot until August!! Believe me, we're the ONLY

house in this neighborhood with it; most people just have window units, but

they're too dangerous with Maddie. We've had to put a fence around our

entire property. We've built two plexi-glass/wood barricades in our 2nd

floor center hall to keep her from going over (Joan has seen them, they're

hard to describe). Gates, locks for doors, refrigerators and windows,

special safety features on things like bureaus and toilets and electrical

outlets, funds for when they DO break or destroy things like plumbing

problems (we've had that twice). Our babysitting fees are twice as high as

other people because we've got to hire someone very skilled, can't rely on

the 13 to 17 year old neighbor kids. With dealing with these behaviors and

being on meds 7x a day, we can't take that chance.

Anyway, these are just some things that pop into my mind....if I think of

more, I'll write again.

Good luck,

Donna

[Guest guest]

I would go from rooom to room and assesss what you have done.

In our house---blinds that can be pulled up instead of curtains or

shades.

Stereo speakers on top of the 6 ft. book cases so they are not pushed

over or cords not eaten.

Stereo strapped closed.

Special locks(deadbolts & flip locks)

The lid to the toilet seat is taped up.

This is only an example.

On Thursday, February 6, 2003, at 11:01 AM, Connie Curran wrote:

> Hi,

>

> I am an infrequent poster but an avid listener who could use some

> help.  I have been going through a really, really ugly divorce for 2

> 1/2 years now.  We hope to set a trial date soon.  Anyway, when I met

> with my attorney today, and we were discussing the house, which I hope

> to keep, he was amazed by all the things I was describing to him.  No

> tables or breakables, no lamps, no electrical cords that will

> chew through, keeping soap, tissues, etc. out of reach because he'll

> eat anything, (had to clue him in to the feces things as well) ,

> limited window coverings (he'll chew them or pull them down), all these

> things that are " normal " for me.  His next question was how our life is

> modified, not just the house, but all of our activities are modified

> because of 's special needs.  This is where I need help.  What

> modifications to home living and other activities have you made? 

>

> My ex has a very extravegent lifestyle, both financially and otherwise,

> and has been unwilling to provide financial or other support to the the

> four children and myself.  I know that some expenses are obvious but

> the hidden ones are the ones that are killing me.  Extra laundry means

> more utilities, carpet cleaning constantly, etc.  We are trying to

> provide a contrast that might make the judge understand a bit of my

> situation.  I have lived in the " accomodating " mode for so

> long, I just don't see sometimes the things we never do or the extra

> money that is spent.

>

> I would greatly appreciate anyones thoughts and suggestions in these

> areas:  household accomodations, lifestyle accomodations, financial

> extras beyond obvious medical bills. 

>

> Anything at all would be helpful and greatly appreciated.

>

> Connie

> Single mom to (9), Austin (7), DS-ASD (7), and (7)

>

>

[Guest guest]

At 02:01 PM 2/6/2003 -0500, you wrote:

>I would greatly appreciate anyones thoughts and suggestions in these

>areas: household accomodations, lifestyle accomodations, financial extras

>beyond obvious medical bills.

Connie:

The level of cleanliness necessary to keep things safe for your son (more

bleach, more frequent cleaning, more time organizing things for indepenednence)

the cost of the visuals: computer, printing laminating.......you were

working on that when I was there and you will need to continue with ferver

over the years.

You must replace things the other boys need when they are destroyed.

You must keep extra locks on the pool.

The cost of the pool (if you do extra chlorinating, include that) is

essential for MIchael as it is one of his few independent experiences.

However, keeping it safe must cost more.

the cost of extra support so you can enjoy the other boys.

the cost of not being able to work as much as you can because of your son's

needs

The types of foods you purchase and make are undoubtedly different for both

and the toher boys. To care for , you cook less for the

others which causes you to need more convenient or easy-to-cook items which

can be expensive.

The car!

nancy had a good idea. Go room to room. I remember you doing many things

for the boys independence.

good luck!

joan

[Guest guest]

Connie,

I¹m sorry you have to go through all this. One thing I would emphasis is

that unlike with a typical child, your ex-husband¹s financial obligations to

your son will not end at 18 yo. (when most child support stops). I would

insist on him funding a special needs trust for that would cover all

the extra expenses now and far into the future when you are no longer able

to care for your son. Your attorney can refer you to someone who

specializes in this.

Extra expenses I can think of are: specialized sports lessons (swimming,

bowling, etc.), extra money for special needs summer camps, replacing

furniture ( is a jumper!) and replacing clothing at a rate twice that

of a typical kid.

Good Luck.

Therese (Mom to 12 yo. DS/PDD)

2/6/03 11:01 AM, Connie Curran at ccurran1@... wrote:

[Guest guest]

At 03:38 PM 2/6/2003 -0800, you wrote:

>replacing clothing at a rate twice that

>of a typical kid.

Having to buy " spcecial " clothes that may not be easy to find. Not

necessarily " special needs clothes, " but as Andy gets older, finding

trendy, elastic waisted pants is not easy.

j

[Guest guest]

--- In , " Connie Curran " <ccurran1@c...> >

Anything at all would be helpful and greatly appreciated.

>

> Connie

> Single mom to (9), Austin (7), DS-ASD (7), and

(7)

Hi Connie,

Just wanted to send you hugs and that all your prayers be answered.

I did run into a site during one of my battles with my never-ending

battles for my son and thought you might want to glance at the

Safety topic, just in case something might help.

http://www.swatjobs.com/autism__pdd.htm

Take care,

Irma,14,DS/ASD

[Guest guest]

Differences in life not necessarily in order of importance

No carpets - too hard to clean feces out of - washable floor coverings.

Locks and alarms on all external doors.

For years the telephone was in a lock box as random dialing produced calals

to Poland and China!

Locks on cupboards with edibles, medicines, breakables.

****24/7 EYE ON CARE *** That means there needs to be a compis mentis adult

available all the time - no bathroom or bath time if only one adult is in

the house!!

RESPITE care which means finding an adult (expensive and rare) to provide

" babysitting " .

Special clothing - elastic waisted short legged pants, shirts proportioned

correctly - expensive.

Medical care watch for the DS comon problems like thryroid and

leukemia. Additional medical care and need of specialists.

Special child restraints for car. I just put the knobs back on the windows

of our car - bought the car in 1995!!

Hope this helps.

Sara

Sara - Choose to make lemonade, not complain about the lemons.

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[Guest guest]

Our multidisciplinary (DC, ND, LAc, MD, LMT) office is looking for a

part-time front office staff person. If you know of anyone, please pass

my email on to them.

Thanks

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