question about CHARGE kids adjusting to changes

[Guest guest]

Hi. With the nice weather lately, we've been trying to get Luke used

to being outside. This has been an enormous challenge for us. Luke

has spent most of his life in 2 or 3 rooms in our house which is

his " comfort zone " . We've also been trying to take him into other

rooms in the house and he literally just " loses it " when we even walk

towards another room. We try bribing him and using comfort items but

he is one stubborn little boy. Luke has been cooped up in this house

practically his whole life (except doc. appts. and VERY few trips to

Grandma's house) and now it's time to get him out and experiencing

life a little. He has an awesome wagon with a canopy, and a couple

of swings outside waiting for him. I've been doing some reading on

CHARGE kids and their sensory issues. I guess I'm a little

confused. How far do I push him to do these things before I'm not

respecting his differences that makes these things difficult for

him? But if we don't push him, he'll never experience anything but

these four walls. I'd really appreciate some advice. Anyone else

ever have this problem?

PS- There's a picture of Luke outside in his wagon on his website.

This was one of the first days we tried it and eventually after many

tears he tolerated it, but we've never been that lucky again. See

the little finger puppet on his thumb? This is his latest comfort

item. He loves holes.

, Luke's mom, age 2 1/2, CHARGE

www.caringbridge.org/mn/lukejoseph

[Guest guest]

-

Aubrie had lots of sensory issues as a baby and young toddler. She couldn't

tolerate the wind/breeze, mist/rain, the bumpy surface under the shopping

cart wheels, etc. We took her everywhere and pushed her just to her limit.

I think there is a fine line. Only you will know (or try to know) where it

is. We pushed her enough to challenge her but not so much to put her over

the edge. And we provided non-threatening sensory experiences at home -

playing with rice, beans, playdo, sugar crystals, jello, etc. We did

Therapeutic Brushing Protocol - not at all on a routine basis like you're

supposed to -- but enough to help, I think. She still enjoys brushing and

joint compressions and will ask for them on occasion.

I had a lot of anxiety about how far to push, how much I had to respect her

issues, etc. I mean, we don't want to make them crazy. Aubrie would cry as

if it literally hurt to have her hair washed. But, gosh, it just had to be

done. So we did it. Only weekly, but we did it. I acknowledged her

discomfort, but let her know we had to do it. I'd also say things like,

" Now, Aubrie I know it doesn't hurt - but it does bother you. " We'd try to

point out the difference between pain and bother. We just had this

conversation again the other day. Where she had her BAHA implant thing, I

have to change the dressing. She cries as if it hurts. Like the Boy who

Cried Wolf, I need her to only cry when it really does hurt - not just when

it bothers her.

Put him in situations that challenge him but not too much. Example: Aubrie

didn't like sitting in the grass or sand. But I'd put her there and make

her " suffer through " . It wasn't something that make her crazy - but she

would sit with her feet held up trying to have as little contact with the

grass or sand as possible. She didn't cry though. So this was a situation

that would challenge her gently.

We also had a big brother to help encourage her. He took her out for her

first swing. She cried and cried at first. But soon it was her favorite

activity. She played in the leaves with him - even though she didn't want

to touch the leaves - because she wanted to do what he did.

Anyway - I think you're on the right track with Luke. Watch for

opportunities to challenge his sensory growth. Another example - I didn't

wipe her mouth when we were eating or clean up her hands too quickly when

they got messy. I wanted her to feel the messiness and not be freaky about

it. Talk him through things. You can acknowledge his feelings without

giving in to them. I'm sure each day offers lots of opportunities to

challenge him! I know ours did. We would routinely arrange our day to

avoid those things - but when I became aware of it, I could allow some

challenge.

Best of luck-

Michele W

Aubrie's mom 9 yrs

[Guest guest]

My experience when Kennedy was a baby was that we had to urge her along with

some things, even if it seemed a little " mean " at first. If it would've

been up to her, we never would've left the house (she hated the sun!) but we

just did what we could to block it and she learned to put her arm up to

block it if she needed it. Even when she was REALLY young 1-2 months old,

she never wanted to be held and it seemed like we were being cruel to pick

her up out of the crib at the hospital, but one of the nurses said to us

that you just have to do it - she needs to bond with you and realize that

GOOD things happen when you get picked up too, not just icky hospital

stuff. So we'd pick her up and she'd wail and wail, we knew we weren't

doing anything to really hurt her, we'd just rock her and sing to her and

gradually she got used to it and I'm so glad I did it. I think you just

need to do it a bit at a time, try and distract them with something

new/exciting, and consider 2 minutes in a different place a success, and

really reward them for trying something new and try to build up as you go.

Good luck

>

> Hi. With the nice weather lately, we've been trying to get Luke used

> to being outside. This has been an enormous challenge for us. Luke

> has spent most of his life in 2 or 3 rooms in our house which is

> his " comfort zone " . We've also been trying to take him into other

> rooms in the house and he literally just " loses it " when we even walk

> towards another room. We try bribing him and using comfort items but

> he is one stubborn little boy. Luke has been cooped up in this house

> practically his whole life (except doc. appts. and VERY few trips to

> Grandma's house) and now it's time to get him out and experiencing

> life a little. He has an awesome wagon with a canopy, and a couple

> of swings outside waiting for him. I've been doing some reading on

> CHARGE kids and their sensory issues. I guess I'm a little

> confused. How far do I push him to do these things before I'm not

> respecting his differences that makes these things difficult for

> him? But if we don't push him, he'll never experience anything but

> these four walls. I'd really appreciate some advice. Anyone else

> ever have this problem?

>

> PS- There's a picture of Luke outside in his wagon on his website.

> This was one of the first days we tried it and eventually after many

> tears he tolerated it, but we've never been that lucky again. See

> the little finger puppet on his thumb? This is his latest comfort

> item. He loves holes.

>

> , Luke's mom, age 2 1/2, CHARGE

> www.caringbridge.org/mn/lukejoseph

>

>

>

--

" It is far better to grasp the universe as it really is than to persist in

delusion, however satisfying and reassuring. " --Carl Sagan

[Guest guest]

Thanks Michele. I wish we'd have taken Luke more places when he was

younger, but his breathing was so horrible that we just stayed home.

Now that he's got a trach, I'm ready to go places. Problem is that

he's not. I've also been meaning to start brushing and joint

compressions with Luke, but we just recently switched his formula,

and I don't want to try too many new things at once. Just in case

there's improvement, I want to know where it came from.

Luke also literally cries like it hurts over little changes. I wish

we were able to reason with him but the communication skills just

aren't there yet (another big issue for us!) It's hard to find a

situation with Luke where he's somewhere in between happy doing what

he wants and off the deep end cause we went for a drive. There's no

in between where we can just work on it a little. We literally feel

like we're putting him through hell doing these ordinary things.

It's really funny cause today we took him outside. He's most

comfortable laying, so we laid out a blanket for him in the shade.

He cried and cried till he finally fell asleep, when he woke up he

cried some more. So we decided to take him for a drive, he got even

more upset. We went to Grandma's house where she has a deck with a

roof so it's covered and in the shade. We laid him on the big rug

she had on the deck. He uncovered his eyes, looked around and up at

the ceiling and was instantly happy. All we could figure is that

having a ceiling comforts him. But then we took him in Grandma's

house and he went back to being mad. Out on the deck, happy again.

Go figure. So tomorrow we're going back to Grandma's covered deck

again. I guess it's progress.

, Luke's mom, 2 1/2 yr old CHARGEr

>

> -

>

> Aubrie had lots of sensory issues as a baby and young toddler. She

couldn't

> tolerate the wind/breeze, mist/rain, the bumpy surface under the

shopping

> cart wheels, etc. We took her everywhere and pushed her just to

her limit.

> I think there is a fine line. Only you will know (or try to know)

where it

> is. We pushed her enough to challenge her but not so much to put

her over

> the edge. And we provided non-threatening sensory experiences at

home -

> playing with rice, beans, playdo, sugar crystals, jello, etc. We

did

> Therapeutic Brushing Protocol - not at all on a routine basis like

you're

> supposed to -- but enough to help, I think. She still enjoys

brushing and

> joint compressions and will ask for them on occasion.

>

>

>

> I had a lot of anxiety about how far to push, how much I had to

respect her

> issues, etc. I mean, we don't want to make them crazy. Aubrie

would cry as

> if it literally hurt to have her hair washed. But, gosh, it just

had to be

> done. So we did it. Only weekly, but we did it. I acknowledged

her

> discomfort, but let her know we had to do it. I'd also say things

like,

> " Now, Aubrie I know it doesn't hurt - but it does bother you. "

We'd try to

> point out the difference between pain and bother. We just had this

> conversation again the other day. Where she had her BAHA implant

thing, I

> have to change the dressing. She cries as if it hurts. Like the

Boy who

> Cried Wolf, I need her to only cry when it really does hurt - not

just when

> it bothers her.

>

>

>

> Put him in situations that challenge him but not too much.

Example: Aubrie

> didn't like sitting in the grass or sand. But I'd put her there

and make

> her " suffer through " . It wasn't something that make her crazy -

but she

> would sit with her feet held up trying to have as little contact

with the

> grass or sand as possible. She didn't cry though. So this was a

situation

> that would challenge her gently.

>

>

> We also had a big brother to help encourage her. He took her out

for her

> first swing. She cried and cried at first. But soon it was her

favorite

> activity. She played in the leaves with him - even though she

didn't want

> to touch the leaves - because she wanted to do what he did.

>

>

>

> Anyway - I think you're on the right track with Luke. Watch for

> opportunities to challenge his sensory growth. Another example - I

didn't

> wipe her mouth when we were eating or clean up her hands too

quickly when

> they got messy. I wanted her to feel the messiness and not be

freaky about

> it. Talk him through things. You can acknowledge his feelings

without

> giving in to them. I'm sure each day offers lots of opportunities

to

> challenge him! I know ours did. We would routinely arrange our

day to

> avoid those things - but when I became aware of it, I could allow

some

> challenge.

>

>

>

> Best of luck-

>

> Michele W

>

> Aubrie's mom 9 yrs

>

>

>

>

[Guest guest]

,

Oh, I can relate to you about our kids not wanting to be held as a

baby. When Luke was in the hospital, he would desat a lot when we

held him. Not sure if he was too comfy or what, but that was

terrible. We would just start snuggling with him and have to put him

down so his numbers would come up. Position was very important for

his breathing. Then, after we brought him home, he never wanted to

be held or rocked. We tried as much as possible but he just bucked

backwards and made it very difficult.

I like the idea of considering 2 minutes in a different place a

success. I think staying positive will help a lot. Yesterday was a

hard day for both Luke and I. I felt Luke was never going to enjoy

so many things in life. I think the nice weather is making me a

little impatient. Thanks for the advise, I'm going try to stay

positive and patient.

, Luke's mom, 2 1/2, CHARGE

-- In CHARGE , " Weir " wrote:

>

> My experience when Kennedy was a baby was that we had to urge her

along with

> some things, even if it seemed a little " mean " at first. If it

would've

> been up to her, we never would've left the house (she hated the

sun!) but we

> just did what we could to block it and she learned to put her arm

up to

> block it if she needed it. Even when she was REALLY young 1-2

months old,

> she never wanted to be held and it seemed like we were being cruel

to pick

> her up out of the crib at the hospital, but one of the nurses said

to us

> that you just have to do it - she needs to bond with you and

realize that

> GOOD things happen when you get picked up too, not just icky

hospital

> stuff. So we'd pick her up and she'd wail and wail, we knew we

weren't

> doing anything to really hurt her, we'd just rock her and sing to

her and

> gradually she got used to it and I'm so glad I did it. I think you

just

> need to do it a bit at a time, try and distract them with something

> new/exciting, and consider 2 minutes in a different place a

success, and

> really reward them for trying something new and try to build up as

you go.

>

> Good luck

>

>

>

>

> >

> > Hi. With the nice weather lately, we've been trying to get Luke

used

> > to being outside. This has been an enormous challenge for us. Luke

> > has spent most of his life in 2 or 3 rooms in our house which is

> > his " comfort zone " . We've also been trying to take him into other

> > rooms in the house and he literally just " loses it " when we even

walk

> > towards another room. We try bribing him and using comfort items

but

> > he is one stubborn little boy. Luke has been cooped up in this

house

> > practically his whole life (except doc. appts. and VERY few trips

to

> > Grandma's house) and now it's time to get him out and experiencing

> > life a little. He has an awesome wagon with a canopy, and a couple

> > of swings outside waiting for him. I've been doing some reading on

> > CHARGE kids and their sensory issues. I guess I'm a little

> > confused. How far do I push him to do these things before I'm not

> > respecting his differences that makes these things difficult for

> > him? But if we don't push him, he'll never experience anything but

> > these four walls. I'd really appreciate some advice. Anyone else

> > ever have this problem?

> >

> > PS- There's a picture of Luke outside in his wagon on his website.

> > This was one of the first days we tried it and eventually after

many

> > tears he tolerated it, but we've never been that lucky again. See

> > the little finger puppet on his thumb? This is his latest comfort

> > item. He loves holes.

> >

> > , Luke's mom, age 2 1/2, CHARGE

> > www.caringbridge.org/mn/lukejoseph

> >

> >

> >

>

>

>

> --

> " It is far better to grasp the universe as it really is than to

persist in

> delusion, however satisfying and reassuring. " --Carl Sagan

>

>

>