Re: At witts end...someone HELP!!!

September 5, 2005

Sorry about that I keep forgetting to change my signature. On most message

boards ds is darling son and dd is darling daughter but it doesn't really

work here. ;o)

I have a daughter who is 7, a son who is 4 and Zach (possible MDS) who is

3!!!

Hope that explains things and once again sorry about that. I will try to

keep the ds/dd out of my signature line.

Kim

>

> I don't understand, you have 3 children wih DS or MDS?

>

September 5, 2005

we just adopted our 3year old

September 6, 2005

Hi there just hang in there my way of coping is that i always try and do

possitive reinforcement always reward the good and try not to acknowledge that

bad so much yes discapline your child but dont make too much of a guss as they

are still getting your attention. For bed timer have you tried putting on a

soothing cd and doing some massage and aromatherapy thats what i do and 80%of

the time it does work that amy relaxes so much so that she falls asleep whilst i

am still massaging her. Hope this is some help

marie mom of amy 6

At witts end...someone HELP!!!

I'm using this as a real venting forum and for that I am forever sorry. So

many others are dealing with things far worse than behavior yet I find

myself at wit's end with this child (Zachary).

I hate myself for hating him sometimes and feel like the worst mother on

the face of the earth. Behavior with Zach just seems to be getting worse.

I'm sure that it must be my imagination...but......

This is going to sound really harsh right now but " THIS CHILD JUST DOESN'T

GET IT "

I CAN " T discipline him like my other kids, he doesn't " get it " ; he just

doesn't. Today for the gazillienth time he unloaded all of the clothes in

his drawers and took everything down in his closet than broke the hangers

(did this during nap time). This has definitely got to stop, BUT HOW! Betime

is such a nightmare because he doesn't settle no matter what kind of before

bed routine we have, he still doesn't settle until very late. ( (

I talk to him and tell him why I am angry and ask him if he knows why I am

angry and he tells me like he does understand but as soon as I turn around

he's back at it.

As you can tell I am completely frustrated right now and I know that I

really need to learn some coping techniques and quick. I'm hoping that

someone, anyone will be able to enlighten me. I know that many of you have

said to treat him like the others but it just seems so much like " easier

said than done " right now.

For some other questions...

How are children with MDS different from " normal " children. Mentality,

speech, physical stuff???

I am aware that some are more " affected " than others but I'm just curious.

I'm sorry if I sound completely ignorant on the subject but really I am.

There are alot of things that I yearn to know about MDS and every little bit

of information helps me understand more.

Thank-you every one for listening to me gripe and I feel much better now.

Typing this has been therapeutic and now I will go and try to tuck Zach in

again for the gazillienth time, lol! He just doesn't like to settle he is

just way to busy and never seems to want to slow down.

)

Kim

wife to dh 1996

mom to

dd March 1998

ds March 2001

ds July 2002 (Zachary - waiting for MDS test results)

September 7, 2005

Dear Kim,

Thank you for using this forum for venting your frustrations. I bet we

have all felt the way you feel at some time with our children. There are some

nights when I put the kids both to bed and leave them with Dad while I go

shopping at Wal Mart heading out the door at 10 p.m. just for a break. That's

pretty sad when grocery/ weekly shopping alone late at night seems like a

" break " instead of a chore. I am a collector of very little, but I have one

vice. I LOVE nice, hand made pottery. Long before we had two children, I

invested in a pot that I really thought was one of the nicest I ever saw. It is

a piece by an artist named Boyce, and she does great stuff. It's a pot that has

humpback whales in gray/white relief against a charcoal background. Hard to

describe, but really beautiful. When we built our home, I had custom made

shelves built in the living room around the sizes and shapes of some special

pieces. The whale pot was one of the most special pieces. On Saturday, while I

was taking a powder, Jonas crawled up on the shelves ( I keep books on the

bottom shelves because of him) and he grabbed my whale pot and now it is in 20

pieces. There was no reason for him to do this. He just decided that he had a

moment of aloneness and he was free to destroy I guess. I was far to disgusted

to punish him. I just had a few tears and took him to bed. He was having no

part in that, so he was going to do to his room stuff like you have described

your son doing during nap time. I had enough destruction, so I laid down and

slept with him. When my husband came home from his morning golf, he saw the pot

and never said a word. He found me asleep with Jonas in bed and left us alone

for hours. That evening we all went to the drive in. That was not much easier

with Jonas going all over the car, but it got me out of the house for a few

hours. I told you all of this so you know that I really know and understand how

frustrating it is. I am comforted by people like Kristy who had a son who was

pretty difficult one time too, who now has none of this to deal with. I keep

telling myself, to keep pressing on and keep praying. One day this stage will

be over.

We get Jonas to settle and sleep by playing lullabies or classical music in

his room at night. We have done it since birth, so it may work better for him

than for all kids, but you may want to try some really nice soft music. Kenny

Loggins " Return to Pooh Corner " is a really good one that most kids like.

Pretty soothing and nice. I hope you occasionally get some time off and take a

date with your husband or something. I wish I did that more, but it is so hard

to arrange sometimes. You guys have sure had to wait a long time for the test

results for your son. I can't for the life of me imagine what was ordered that

is taking so long. Jonas' blood work was sent with a " rush " order on it, but it

was only about 10 days until we knew he had MDS for sure. I hope that you are

getting some good suggestions, and that you will find that " peace that surpasses

all human understanding " . Praying for you and your family,

Blessings,

Barb Martz

Mom to Jonas (MDS) 4 & 10