Re: Guilty Mommy question

[Guest guest]

Could you make it one night instead? Maybe his memory isn't that long, and he

feels abandoned. We just have respite for a few hours at a time. I know even

overnight for us would be so great. I can't imagine 2 nights.

Loriann

[Guest guest]

<That is to say that I value what you have to offer in regard to

what you are seeing in . (Has she stopped licking the backs of the

spoons when she puts them away? >

Someone else's kids do this???? That's amazing how much we have in common.

Yes, I use a gluten free diet. We saw such great progress, he was able to drop

Dexedrine totally, and cut back on the Risperdal. My " teaching style " is ABA,

though I didn't know it until my therapist told me. I've been using it for

years, because I found it to be an approach that worked. I can't even tell you

what I do. I asked for training on behavior modification, and was told it was

exactly what I was doing (after she observed me).

I don't like the fact that needs meds, but I try to look at it like a

diabetic needs insulin. I wouldn't deprive him of meds that help him to stay

focused any more than I would a diabetic his insulin. And they do help him keep

everything together. I just worry about the diet, will he be able to keep it up

when he gets older? Or will someone always have to be on him about it? It is

essential that both parents support it, though. You can't do that half way.

[Guest guest]

Jacqui, as hard as it is too leave I think it is a good thing.

Kids are

so good at making us feeling guilty but no one even our kids can do

that unless

we give them permission to do it. could be testing you to and

very

persisant I must say but the situation sounds so perfect for you I do

not feel

you should give in to or your feelings. Also look at what it

does for

the family over that month by having that one weekend a month respite.

It must

make everything much easier for you and for .

Besides with 10 years old it is good for him to get away from

you all too

and start to develop a sense of independance. Someday you may want to

send him

to camp or overnight for some other occassion with time this will only

make it

easier.

Just my thoughts. Take care and good luck!

R. mother to Zach age 15

Jaxmeisel@... wrote:

> From: Jaxmeisel@...

>

> Hello valued friends,

>

> I'm writing this to ask you for your advice/responses to my situation with

> and respite.

>

> We found a wonderful, loving woman who has raised ten foster kids to happy,

> stable adulthood, has adopted three young children (one with special needs)

> and has become a Regional Center vendored out-of-home Respite provider. She

> lives 20 minutes away from our house in a semi rural area. Her house is very

> big and extremely kid-friendly. The yard is ideal as there is a jungle gym

> with swing and slide, as well as a new, safe, heated swimming pool with a

> water slide.

> Her husband is a firefighter, so he's not always at home when we take

> for a respite weekend, but when he's been there, we've been impressed with

> his warmth. This couple takes all sorts of kids comfortably in stride.

>

> Here's the thing: after fighting to get a good respite situation for

> one weekend a month, the regional center finally approved it. I know that

> is well cared for at this home, yet dropping him off and settling him

> in on a Friday afternoon is sheer torture for the two of us (i.e. and

> his Momma). The first time was hard, but doable. He's been there now for 4

> weekends, one per month, and it gets harder and harder. I had to trick him

> into paying attention to something else when I took him this past Friday, and

> then, feeling wracked with guilt, I ran out of the house and jumped into my

> car and drove away as quickly as I could.

>

> They have made a little " welcome " ritual of ordering cheese pizza the

> evening he arrives, so that he knows fun is in store. He plays with the

> other kids, to the extent that he knows how to play (hardly at all), watches

> Disney videos (at which he is very adept!) and swims - which he loves. This

> is not boot camp. The respite weekends mean that we can take , our 7

> year old, to places that would hate, ex. the Getty Museum, or to a

> kids' theatre production, or we all just hang out and relax at home without

> having to be on full alert that is unpacking all the sock drawers

> (his favorite stim) or sneaking out of the house to try and walk to the video

> store all alone!

>

> We need the break, but hates being away from me and doesn't really

> like being at someone else's house for two whole nights.

>

> The respite situation is almost perfect, except that Mattehw doesn't want to

> be there. Should I stop taking him, ot should he just have to get used to it

> because the rest of the family needs the break and it's a loving, safe

> environment?

>

> I am totally angst-ridden over this.

> Thanks for listening.

>

> Jacqui

> Mom to (10, DS, ASD) and Josh (7)

>

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[Guest guest]

I am writing this at the risk of totally alienating myself from this

entire group. But I already feel a bit alienated anyway~ nothing new.

This is in no way a judgement call on anyone else's decisions so PLEASE

~ no flames. Keep in mind that I am admittedly, an oddball. I speak only

for myself.

First of all I would be thrilled if missed me that much, though I

will probably never know as I have a very difficult time leaving her for

more than 3 hours at a time, even with my husband. This is probably a

very personal thing for me as I was " left " alot as a child. The

situation sounds idyllic for 75% of your family Jacqui, but my heart

goes out to . Does he understand that you ARE coming back for

him? Does he act out the next day in school; are there behavioral

repercussions? Is there a way to try it for a shorter period of time and

graduate to an entire weekend? I don't really know how HF he is but with

at a 2 yr old level I know she doesn't comprehend the Daddy

leaving thing and I have just spent a week suffering the consequences of

her reactive behavior. I take solace in the fact that he will be home

any moment and I know she will totally ignore him, then beat the cr**

out of him later on tonight while I watch with a big smile on my face.

I also need to say that I would very much like to hear from any

other " oddballs " on this list that do not have their dually dxed

children on psychoactive meds. I will never say " never " but FOR ME and I

underline " only " for me part, I have seen such success with by

attacking the Autism monster via diet, allergy, environmental, and GI

treatment that I can't believe there are no others who have tried and

found the same thing with their DS/ASD kids.

Woooops ---- Daddy dearest is home. Bye all. Sherry

[Guest guest]

At 05:04 PM 3/26/00 -0500, you wrote:

>From: gldcst@...

> I also need to say that I would very much like to hear from any

>other " oddballs " on this list that do not have their dually dxed

>children on psychoactive meds. I will never say " never " but FOR ME and I

>underline " only " for me part, I have seen such success with by

>attacking the Autism monster via diet, allergy, environmental, and GI

>treatment that I can't believe there are no others who have tried and

>found the same thing with their DS/ASD kids.

Sherry?

This would alienate you b/c?? I think ine (pnavarro@

somethingorother.com) is gluten free and using ABA 40+ hours a week.

Lori (laurie?) uses a combination of gluten free and a medication, I think.

Donna's daughter is not on any medications. They're primarily using floor

time, sensory integration, and picture systems.

I can't keep track of everyone's kids.

It would be nice to hear about some teaching strategies, tricks, or good

methods out there.

Last I heard, you were setting up a type of TEACCH method in home, is that

right? I have the hardest time keepng *myself* disciplined....and if I try

too hard to start some sort of " program " or " schedule " I become the WWW

around here. I've had to go very slowly....

Last, my husband would never go for a separate diet for Andy--or for us

changing our eating habits that dramatically. Beyond the politics of

therapies and all that, it simply would not be supported enough to see any

success or failure. I have enough stress.....so I attack it from other

angles. That is to say that I value what you have to offer in regard to

what you are seeing in . (Has she stopped licking the backs of the

spoons when she puts them away?

I don't want one of our most creative members to feel alienated!! Why,

where would I have been without your great rendition of the " stim object

developemental hierarchy " ?

I hope you get a break tonight.

Miss hearing from you and about .

j

[Guest guest]

Does he like to listen to tapes? We used to leave Elie a Mommy, Daddy, Elie

tape that we all made together of noises and music and a little conversation but

always ending with " See you soon! Love ya. Mommy and Daddy " . He would play

that when he got anxious.

Sara

>>> Jaxmeisel@... - 03/26/0 2:40 PM >>>

From: Jaxmeisel@...

Hello valued friends,

I'm writing this to ask you for your advice/responses to my situation with

and respite.

We found a wonderful, loving woman who has raised ten foster kids to happy,

stable adulthood, has adopted three young children (one with special needs)

and has become a Regional Center vendored out-of-home Respite provider. She

lives 20 minutes away from our house in a semi rural area. Her house is very

big and extremely kid-friendly. The yard is ideal as there is a jungle gym

with swing and slide, as well as a new, safe, heated swimming pool with a

water slide.

Her husband is a firefighter, so he's not always at home when we take

for a respite weekend, but when he's been there, we've been impressed with

his warmth. This couple takes all sorts of kids comfortably in stride.

Here's the thing: after fighting to get a good respite situation for

one weekend a month, the regional center finally approved it. I know that

is well cared for at this home, yet dropping him off and settling him

in on a Friday afternoon is sheer torture for the two of us (i.e. and

his Momma). The first time was hard, but doable. He's been there now for 4

weekends, one per month, and it gets harder and harder. I had to trick him

into paying attention to something else when I took him this past Friday, and

then, feeling wracked with guilt, I ran out of the house and jumped into my

car and drove away as quickly as I could.

They have made a little " welcome " ritual of ordering cheese pizza the

evening he arrives, so that he knows fun is in store. He plays with the

other kids, to the extent that he knows how to play (hardly at all), watches

Disney videos (at which he is very adept!) and swims - which he loves. This

is not boot camp. The respite weekends mean that we can take , our 7

year old, to places that would hate, ex. the Getty Museum, or to a

kids' theatre production, or we all just hang out and relax at home without

having to be on full alert that is unpacking all the sock drawers

(his favorite stim) or sneaking out of the house to try and walk to the video

store all alone!

We need the break, but hates being away from me and doesn't really

like being at someone else's house for two whole nights.

The respite situation is almost perfect, except that Mattehw doesn't want to

be there. Should I stop taking him, ot should he just have to get used to it

because the rest of the family needs the break and it's a loving, safe

environment?

I am totally angst-ridden over this.

Thanks for listening.

Jacqui

Mom to (10, DS, ASD) and Josh (7)

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[Guest guest]

Jacqui,

Just thought I'd add my opinion here.....sounds like you've come up with a good

compromise by reducing the time to one night. I would not stop the respite for

a

number of reasons. First and foremost, your family needs it. At the risk of

offending everyone here, let me state that we do not lead normal lives (I KNOW,

I

KNOW......what is " normal?) A small glimpse of how the rest of the world lives

is good for the soul, good for our other children, and good for our marriages.

Now I can count the number of times we have done this on one hand (and have

fingers left over), but we have let Tanner stay with grandma while the rest of

us

went on a family outing. We didn't leave him because we didn't want to take

him,

but because we knew he would absolutely hate where we were going (Disneyland),

and therefore no one would have a good time. I know this situation is not

exactly comparable, as Tanner loves to go to grandma's.

Secondly, the place sounds ideal. Who knows..... might decide to like it

there eventually (soon, hopefully). These people sound like the perfect couple

to add to your circle of friends. I know you checked it out thoroughly and you

felt comfortable with the place and the people. Someone mentioned being fearful

of abuse. I worry about that too. But thankfully, there are more good people

in

the world than bad. There are people who are truly kind, compassionate and

loving. We need to find these people and include them in our lives.

Lastly, we need to help ourselves to let go. We love our children the most. We

take care of them the best. But we are not the only ones who can do this. Most

of the people on this list have *children* who have autism and Down syndrome.

Someday soon, we will have adult children with autism and Down syndrome.

There's

a million options for what will happen then, but I would guess that the majority

of us are hoping for some more time to ourselves. Your one-weekend-per-month

sounds like a good way to get this painful process started.

Wow, this turned out to be much longer than I anticipated. I have a lot of this

on my mind because we've been going over our life insurance. No....we haven't

made a will. No....we haven't picked guardians for our children. Yes....I've

been having nightmares over the " unthinkable " happening. I'm stupidly following

the theory that if I don't do anything, nothing bad will happen!

Hope this helps to relieve a bit of your guilt.

Love, Jill

[Guest guest]

In a message dated 3/27/00 4:12:31 PM Eastern Standard Time, jill@...

writes:

<< I would not stop the respite for a

number of reasons. First and foremost, your family needs it. >>

I agree, I agree, I agree!!!!

<<We didn't leave him because we didn't want to take him,

but because we knew he would absolutely hate where we were going (Disneyland),

and therefore no one would have a good time. >>

My girlfriend did the same thing. Her daughter would have freaked being

there and this way the rest of the kids (5 others) were able to do what they

wanted/needed with their Mom and Dad. Sometimes, we just really have to

prioritize and do what works for our other kids too.

We go down the shore to my MIL's house at the beach. My in-laws have 8 kids

all with their own families and we all share the duplex, taking turns. Some

of you may remember my nightmare a couple years ago (Joan, I know you do)

when Maddie climbed the railing and I caught her as she was falling (a 20

foot drop to cement). I have NEVER recovered, trust me!!! She also doesn't

sweat, so beach time has to be limited (goes in the water, but tries to head

for England with gusto and eats sand like it's dinner). Normal life?

NAH!!!! So this year, recognizing my immense stress about shore time

approaching, my sisters-in-law (3 of them) have decided to take turns coming

to my house to take care of Maddie while DH and I take the other 4 to the

shore. (only 1 1/2 hrs away, so I'll be popping back and forth to see her)

I struggled with this, but DH told me we have to think of our other kids.

He's right. And I think Jill's right too. I realize that we're very blessed

to have a large family to help out, but if I didn't, I'd do the respite.

Good luck Jacqui!!!! I think you'll be glad for the break, once you take

it!!!!

{{{{{{{{{{{{{{hugs}}}}}}}}}}}}}}]

Donna

[Guest guest]

In a message dated 3/26/00 5:04:53 PM Eastern Standard Time, gldcst@...

writes:

<< I am writing this at the risk of totally alienating myself from this

entire group. But I already feel a bit alienated anyway~ nothing new.

This is in no way a judgement call on anyone else's decisions so PLEASE

~ no flames. Keep in mind that I am admittedly, an oddball. I speak only

for myself. >>

Sherry Sherry Sherry!!!! Thou art confused!!!! You're on Ds/Aut

listserv!!!! No judging here, remember???

<< I also need to say that I would very much like to hear from any

other " oddballs " on this list that do not have their dually dxed

children on psychoactive meds. I will never say " never " but FOR ME and I

underline " only " for me part, I have seen such success with by

attacking the Autism monster via diet, allergy, environmental, and GI

treatment that I can't believe there are no others who have tried and

found the same thing with their DS/ASD kids.>>

Well, I'm one of the *oddballs* Sherry. I'm not necessarily good at leaving

Maddie, even with family, but I do it because she really IS fine---I'm the

one with the problem. And just like you're not comfortable leaving ,

even for a short time, I'm not comfortable doing the meds thing. Ok, I'll be

honest, I'm terrified of it. So until I see a time when things are

unbearable, I won't do it. I recognize that other people who see us think

that things are intolerable (there's that *normal* stuff again), but we are

the ones to decide when it becomes intolerable. And while I have my days

(Joan knows quite well every time I have one....LOL) I'm not at that point

yet. Progress is extremely slow with Maddie, but it's there and she's

nowhere near the kid she was a year ago, and the year before that one I don't

even wanna remember. And in no way do I even remotely judge anyone who

takes the meds route (like I know you don't). Maddie is not is not

Andy is not Ellie is not and on and on and on. As I said in a

previous post, I'm a firm believer in floortime for Maddie. Not many around

us know it or understand it. But I'll tell ya, my 7 year old does it with

Maddie like an expert!!!!! We all find our own method!!! And when we need

something different, we move on to the next thing.

And don't ever feel alienated-----certainly not ever from us!!!

{{{{{{{{{{{{{{hugs}}}}}}}}}}}}}

Donna (who prefers the word *eccentric* to *oddball*; it's much more

intriguing!!!! LOL)

[Guest guest]

In a message dated 3/26/00 7:45:08 PM Eastern Standard Time,

Midvale@... writes:

<< Does he like to listen to tapes? We used to leave Elie a Mommy, Daddy,

Elie tape that we all made together of noises and music and a little

conversation but always ending with " See you soon! Love ya. Mommy and

Daddy " . He would play that when he got anxious.

Sara

>>

Oooohhhh Sara!!!!! What a GREAT idea!!!!

Donna

[Guest guest]

For those of you with " away " kids, Robbyn, our favorite sister sends songs and

stories on tape to Elie. The wheels on the bus and Mr. Sunshine are favorites.

She also does folk stories with crazy noises - like water going down the drain

(she goes in the b/r for that, toilet noises, washing machine noises, and

sirens. One creative sister!@

Sara

>>> duffey48@... - 03/28/0 2:30 PM >>>

From: duffey48@...

In a message dated 3/26/00 7:45:08 PM Eastern Standard Time,

Midvale@... writes:

<< Does he like to listen to tapes? We used to leave Elie a Mommy, Daddy,

Elie tape that we all made together of noises and music and a little

conversation but always ending with " See you soon! Love ya. Mommy and

Daddy " . He would play that when he got anxious.

Sara

>>

Oooohhhh Sara!!!!! What a GREAT idea!!!!

Donna

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[Guest guest]

I dont use drugs,not because of a real fear but none seem to work without

treating foe side effects as well,when I first started nursing people were on

loads of medication in the 17 yrs I worked drug use diminished as we became

more skilled in giving the minimum dose for effect and more skilled in other

forms of intervention,but definately the use of psychotropics enabled many

people to have better lives and if someone was to produce a drug that would

enhance s life I would try it but so far I am unconvinced,Nicky takes

anti convulsants,and we have thioradazine and temazepam on standby I only

have to use them occasionally and because they are prn a small dose is

usually effective,I think I am waiting for the drug to make him " better " and

give him back the life he had before autism ,I think it will be a long wait

Pat

[Guest guest]

Please tell me about floor time and what it is. I have an idea of what

I think it is but not sure that what I think it is is really it.

R./

duffey48@... wrote:

> From: duffey48@...

>

> In a message dated 3/26/00 5:04:53 PM Eastern Standard Time,

> gldcst@...

> writes:

>

> << I am writing this at the risk of totally alienating myself from

> this

> entire group. But I already feel a bit alienated anyway~ nothing new.

> This is in no way a judgement call on anyone else's decisions so

> PLEASE

> ~ no flames. Keep in mind that I am admittedly, an oddball. I speak

> only

> for myself. >>

>

> Sherry Sherry Sherry!!!! Thou art confused!!!! You're on Ds/Aut

> listserv!!!! No judging here, remember???

>

> << I also need to say that I would very much like to hear from

> any

> other " oddballs " on this list that do not have their dually dxed

> children on psychoactive meds. I will never say " never " but FOR ME and

> I

> underline " only " for me part, I have seen such success with by

> attacking the Autism monster via diet, allergy, environmental, and GI

>

> treatment that I can't believe there are no others who have tried and

> found the same thing with their DS/ASD kids.>>

>

> Well, I'm one of the *oddballs* Sherry. I'm not necessarily good at

> leaving

> Maddie, even with family, but I do it because she really IS fine---I'm

> the

> one with the problem. And just like you're not comfortable leaving

> ,

> even for a short time, I'm not comfortable doing the meds thing. Ok,

> I'll be

> honest, I'm terrified of it. So until I see a time when things are

> unbearable, I won't do it. I recognize that other people who see us

> think

> that things are intolerable (there's that *normal* stuff again), but

> we are

> the ones to decide when it becomes intolerable. And while I have my

> days

> (Joan knows quite well every time I have one....LOL) I'm not at that

> point

> yet. Progress is extremely slow with Maddie, but it's there and

> she's

> nowhere near the kid she was a year ago, and the year before that one

> I don't

> even wanna remember. And in no way do I even remotely judge anyone

> who

> takes the meds route (like I know you don't). Maddie is not is

> not

> Andy is not Ellie is not and on and on and on. As I said in a

> previous post, I'm a firm believer in floortime for Maddie. Not many

> around

> us know it or understand it. But I'll tell ya, my 7 year old does it

> with

> Maddie like an expert!!!!! We all find our own method!!! And when we

> need

> something different, we move on to the next thing.

> And don't ever feel alienated-----certainly not ever from us!!!

> {{{{{{{{{{{{{{hugs}}}}}}}}}}}}}

> Donna (who prefers the word *eccentric* to *oddball*; it's much more

> intriguing!!!! LOL)

> -----------------------------------------------------------------------

>

> -----------------------------------------------------------------------

>