Guilty Mommy question

[Guest guest]

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)

[Guest guest]

Sherry,

Another " oddball " giving her own view here. I too, cannot leave Seth for

more than an hour or two at a time, and my respite is my daughter. I hate

even letting him go to school. My fear would be abuse. How well do we

really know anyone? Not only speaking of the parents at the house, but what

about the other children there? Just a thought I had to share.

Gail, Mom to Seth(4) jo(7) (9) (22) (24) grandma to

Errick(4) and wife to (my hero)

[Guest guest]

Thanks all for your helpful responses to my respite dilemma. What I think

I'll do is try one night instead of two nights, as some of you suggested.

Perhaps if I take around 11:00 a.m. on a Saturday and go and pick him

up and bring him home around 2 or 3 p.m. on a Sunday, we will accomplish far

more, i.e. actual respite. As it stands, I find myself phoning to check on

how he's doing about 4 times a day, and worrying the rest of the time. Could

be that he can't remember or doesn't " get it " after a night and part of a day

that Mommy really is coming to get him, but only after yet one more sleep.

I'll try the shorter length of time in April. I'll also put together a

little family picture book and a tape to reassure him that we'll be there to

bring him back home.

If only I had family close by, I wouldn't be in this situation, but my family

lives in South Africa and my husband's family is not willing to take

for more than an hour or two once or twice a year! With an attitude like

that, I don't take them up on the rare offers anyway. I only want to

be where he is very much wanted. As it is I feel awfully guilty that I (or

that *we*, his Dad and brother, too) need to schedule breaks from him at all.

BTW, is not on any meds, to pick up on a whole other thread that was

starting in that regard. This may change ...

Thanks again for your input.

Jacqui

[Guest guest]

We take overnight respite as time permits. Our main thrust is here. But I

need to preserve the relationship I have with Garry. garry has a hard time

being away from the kids. My respite workers laugh becuse he did call home

ever 2 hours just to check on the kids. He is down to about 3 times a day

now. But in September we took our first 2 nights away. We had good sleep

and time or each other. And Garry wonders why we did not do this before.

We do not have out of home respite. My workers come to my house, the

children sleep in their own beds. JJ stands at the window when we leave,

throws the books out of the bookcase, but he get over it!

What I do have a problem with is going and not taking JJ but taking the

other kids. Actually I have 10 extra hours for him a month. But I haven't

used it yet. I will use hours next week when we go to a friends.

will come to help with JJ .

Could you let your child have a family portrait to look at when he feels

unsure? I did this when garry was at sea for 2 years and my oldest 2 were 3

and 4. Also after h died we gave Sam a laminated picture of her to

hold.

& Garry, parents of (9), (8), JJ (6), (5), and

Esther (3). All adopted & with Down Syndrome.

----------

[Guest guest]

In a message dated 3/29/00 12:39:24 AM Eastern Standard Time, sammy61@...

writes:

<<

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./

>>

Hi ,

Floortime method, devised by Stanley Greenspan, is basically a follow your

child's lead approach. It's kind of like entering their world first in order

to bring them out to ours. How we implement it with Maddie often starts with

imitating her behavior. sounds easy; til you seen Miss Maddie in action.

Try being an adult and sucking on your entire hand, or dangling socks, or

dribbling a ball and letting it bounce on your chin, or making click click

noises with your tongue. LOL But guess what, it's the only way to get

Maddie's attention. She pays attention when we do this and it leads to eye

contact and then to her imitating us; something we never had. It cracks us

up to watch her do things deliberately to see if we do it. Talk about

feeling empowered, huh?!? LOL ABA works for many kids I beleive, but I knew

it would be too forceful and too rote for Maddie. Sure, we could use it and

get some results behaviorially, but I want it to come from Maddie's desire to

relate to another human being, not because we taught her over and over to do

it a certain way. I think that eventually some ABA and discrete will benefit

Maddie when we are trying to teach her some things, like feeding and

toileting and dressing. But before we get to any of that, we have to help

her learn how to build relationships and how to want to be in our world.

Make sense? I am a huge Greenspan fan and have a few of his books. I

listened to a couple tapes of kids who were seen by him and I was so

impressed. One of the things he says is when a child is exacerbating on an

object, rather than take that object away, use it to expand on learning.

This made so much sense to me since when we took Maddie's ball from her,

she'd flip and there's no getting her back on track to learning. However,

when we take it and use it as a play object to get interaction, we get a

totally different response. put it on our head and make funny sounds (bonk),

play peek a boo with it, sit on it giggling, hide it under our

shirts---------all these things end up bringing Maddie to a relational

experience and before you know it, we toss the ball and don't need it anymore.

Sorry this is so long!!! To coin one of Joan's phrases, can you tell this is

something I'm passionate about????? LOL

I have 25 tips of Floortime, if you are interested or anyone else? I'd be

glad to send it.

Donna

[Guest guest]

>I have 25 tips of Floortime, if you are interested or anyone else? I'd be

>glad to send it.

>Donna

YES YES YES send away!!

[Guest guest]

In a message dated 3/26/00 10:37:38 PM Central Standard Time,

Jaxmeisel@... writes:

<< As it is I feel awfully guilty that I (or

that *we*, his Dad and brother, too) need to schedule breaks from him at

all.

>>

I know what you mean by this, Jacqui. I can relate because I feel this way

at times also. But I've also found that if we don't take " breaks " from

, then I feel guilty that I'm not taking my other two children to so

many places that just can't tolerate and that I'm robbing them of

childhood experiences that they should have. It's so easy to end up with our

family lives revolving around our child with a disability because they

require so much energy and attention. I know that this has happened in our

family and then my marriage suffers and I feel guilty about not doing enough

for and with my other kids. There just has to be a balance, and the struggle

is to find that balance. Sometimes I have to remind myself that there are

five people in our family and that one person should not be more important

than the other four. I have to work on this all the time. In fact, I will

share with you that I've worked on this with a therapist. She helped me to

realize that when our family dynamics get out of whack, it affects us all.

She also helped me to realize that our marriage HAS to be a priority or the

kids will ultimately suffer as well. Achieving this balance is really

difficult, but really necessary for everyone's happiness in the family.

It sounds like you've gotten some great advice, Jacqui, and that you have a

plan to modify the respite weekend. Sounds like a good compromise - modify

it, but don't give it up. Sounds like a good balance to me. Hang in there,

Maureen

[Guest guest]

Maureen,

Thanks for the wonderful and balanced avice you gave me regarding respite and

family priorities. You're right -- we do need to constantly remind ourselves

to do the best for our children with special needs, but not at the expense of

our marriages and other children. It seems we need to learn how to juggle,

keeping all the balls in the air. But if we don't take time for ourselves,

everything will come crashing down.

Here's to graceful juggling for all of us!

Best,

Jacqui