Jump to content
RemedySpot.com

Re: just need to vent

Rate this topic


Guest guest

Recommended Posts

Guest guest

Hello it is over here in Fort Worth. You are NOT a bad mother!

You are doing great. Please don't give up holding your child. I know you

won't. Do call and speak to the Pulmanologist, let them know that you need and

want to learn to empty the venting tube. See what they say. Let them know the

concern you have with this being an issue when you are not there.

Remember you are doing a great job at being a mom to this little gift from God.

, Randy & Garland Goodwin

---- erin32573@... wrote:

=============

Okay, I know we have felt this way sometime or another regarding our

children. Today I felt at fault about sometime and helpless. and I went to

the

hospital with Olivia to see JD. He was sleeping and doing good. Olivia was

getting kinda fussy and loud like most babies do when they want something and so

that woke JD up, which was okay. So after I gave Olivia some juice, I was going

to let her get in bed with her brother. I gave Olivia to and was going

to move JD over just a little bit like I have always done. In the pass I have

always been able to move him around the bed with nothing happening. He started

getting a little bit mad but something else looked different. Another RT and

another nurse came in (his RT and Nurse were with other patients) and just

said that he was just mad. I just kept saying that his color doesn't look good,

something is wrong. Something was not right within seconds JD stopped

breathing, OMG they had to bag him and get him to calm down. We walked out of

the room

and I just kept thinking " what did I do " , " I feel like a bad mom " , " All I

did was just move him a little bit. " I took Olivia and went off to a quite area

and just balled my eyes out. found me and said that it wasn't my fault

and that JD , when he gets mad, he clamps up and doesn't know what to do and

over does it. When they got him calmed down, he was still breathing around 117

breathes per minute but his O2 was in the 90's and heart-rate was okay. The

on-call doctor came in while the RT did a breathing treatment. I don't know much

about this but when JD was at Our Children's House I always empty his water

out that came out of his venting tube. Now he has a different one and I don't

think that it was being emptied. If the water gets back up in the tubing and

into his trach that can cause him to Exasperate and this is what the doctors

said

that might have happened when I moved him. If this in the case then why don't

they check it or teach us, the parents, how to do it. I would be glad to do

it. I don't want something like this to happen again. has not been too

happy with this floor because of us not being called when JD went into Res.

Distress last time. I am going to call in the morning and have JD's Pulmatory

doctor call me and talk about all of this. They had been talking about him going

back to Our Children's House sometime this week, so is this going to be a set

back since they are starting to order Chest X-rays, Blood Gasses..ect? I just

feel so helpless right now and scared that if I pick up to hold my son then

something else will happen. I was just getting over my fears of all of this and

getting very comfortable holding him, changing him, bathing him, dressing him.

I hope this gets better

& , parents to Olivia and JD(CHARGE: Choanal Atresia, Heart

Repair, TE-F Repair, G-Tube, Trach , Hernia Repair and A Happy Little Man )

7months

Link to comment
Share on other sites

Guest guest

Hello it is over here in Fort Worth. You are NOT a bad mother!

You are doing great. Please don't give up holding your child. I know you

won't. Do call and speak to the Pulmanologist, let them know that you need and

want to learn to empty the venting tube. See what they say. Let them know the

concern you have with this being an issue when you are not there.

Remember you are doing a great job at being a mom to this little gift from God.

, Randy & Garland Goodwin

---- erin32573@... wrote:

=============

Okay, I know we have felt this way sometime or another regarding our

children. Today I felt at fault about sometime and helpless. and I went to

the

hospital with Olivia to see JD. He was sleeping and doing good. Olivia was

getting kinda fussy and loud like most babies do when they want something and so

that woke JD up, which was okay. So after I gave Olivia some juice, I was going

to let her get in bed with her brother. I gave Olivia to and was going

to move JD over just a little bit like I have always done. In the pass I have

always been able to move him around the bed with nothing happening. He started

getting a little bit mad but something else looked different. Another RT and

another nurse came in (his RT and Nurse were with other patients) and just

said that he was just mad. I just kept saying that his color doesn't look good,

something is wrong. Something was not right within seconds JD stopped

breathing, OMG they had to bag him and get him to calm down. We walked out of

the room

and I just kept thinking " what did I do " , " I feel like a bad mom " , " All I

did was just move him a little bit. " I took Olivia and went off to a quite area

and just balled my eyes out. found me and said that it wasn't my fault

and that JD , when he gets mad, he clamps up and doesn't know what to do and

over does it. When they got him calmed down, he was still breathing around 117

breathes per minute but his O2 was in the 90's and heart-rate was okay. The

on-call doctor came in while the RT did a breathing treatment. I don't know much

about this but when JD was at Our Children's House I always empty his water

out that came out of his venting tube. Now he has a different one and I don't

think that it was being emptied. If the water gets back up in the tubing and

into his trach that can cause him to Exasperate and this is what the doctors

said

that might have happened when I moved him. If this in the case then why don't

they check it or teach us, the parents, how to do it. I would be glad to do

it. I don't want something like this to happen again. has not been too

happy with this floor because of us not being called when JD went into Res.

Distress last time. I am going to call in the morning and have JD's Pulmatory

doctor call me and talk about all of this. They had been talking about him going

back to Our Children's House sometime this week, so is this going to be a set

back since they are starting to order Chest X-rays, Blood Gasses..ect? I just

feel so helpless right now and scared that if I pick up to hold my son then

something else will happen. I was just getting over my fears of all of this and

getting very comfortable holding him, changing him, bathing him, dressing him.

I hope this gets better

& , parents to Olivia and JD(CHARGE: Choanal Atresia, Heart

Repair, TE-F Repair, G-Tube, Trach , Hernia Repair and A Happy Little Man )

7months

Link to comment
Share on other sites

Guest guest

Hello it is over here in Fort Worth. You are NOT a bad mother!

You are doing great. Please don't give up holding your child. I know you

won't. Do call and speak to the Pulmanologist, let them know that you need and

want to learn to empty the venting tube. See what they say. Let them know the

concern you have with this being an issue when you are not there.

Remember you are doing a great job at being a mom to this little gift from God.

, Randy & Garland Goodwin

---- erin32573@... wrote:

=============

Okay, I know we have felt this way sometime or another regarding our

children. Today I felt at fault about sometime and helpless. and I went to

the

hospital with Olivia to see JD. He was sleeping and doing good. Olivia was

getting kinda fussy and loud like most babies do when they want something and so

that woke JD up, which was okay. So after I gave Olivia some juice, I was going

to let her get in bed with her brother. I gave Olivia to and was going

to move JD over just a little bit like I have always done. In the pass I have

always been able to move him around the bed with nothing happening. He started

getting a little bit mad but something else looked different. Another RT and

another nurse came in (his RT and Nurse were with other patients) and just

said that he was just mad. I just kept saying that his color doesn't look good,

something is wrong. Something was not right within seconds JD stopped

breathing, OMG they had to bag him and get him to calm down. We walked out of

the room

and I just kept thinking " what did I do " , " I feel like a bad mom " , " All I

did was just move him a little bit. " I took Olivia and went off to a quite area

and just balled my eyes out. found me and said that it wasn't my fault

and that JD , when he gets mad, he clamps up and doesn't know what to do and

over does it. When they got him calmed down, he was still breathing around 117

breathes per minute but his O2 was in the 90's and heart-rate was okay. The

on-call doctor came in while the RT did a breathing treatment. I don't know much

about this but when JD was at Our Children's House I always empty his water

out that came out of his venting tube. Now he has a different one and I don't

think that it was being emptied. If the water gets back up in the tubing and

into his trach that can cause him to Exasperate and this is what the doctors

said

that might have happened when I moved him. If this in the case then why don't

they check it or teach us, the parents, how to do it. I would be glad to do

it. I don't want something like this to happen again. has not been too

happy with this floor because of us not being called when JD went into Res.

Distress last time. I am going to call in the morning and have JD's Pulmatory

doctor call me and talk about all of this. They had been talking about him going

back to Our Children's House sometime this week, so is this going to be a set

back since they are starting to order Chest X-rays, Blood Gasses..ect? I just

feel so helpless right now and scared that if I pick up to hold my son then

something else will happen. I was just getting over my fears of all of this and

getting very comfortable holding him, changing him, bathing him, dressing him.

I hope this gets better

& , parents to Olivia and JD(CHARGE: Choanal Atresia, Heart

Repair, TE-F Repair, G-Tube, Trach , Hernia Repair and A Happy Little Man )

7months

Link to comment
Share on other sites

Guest guest

It will get better. I remember when was way beyond this stage but

got a cold and slept and slept so much that I called a friend. I couldn't

bring myself to touch my own child. I had been made to feel that insecure.

Needless to say, my dear not only touched but did me as

well. I started to learn only then how can/does react with certain

illnesses. Let her have an ear infection, she hits herself. Let her have a

cold, and she seems downright dead for a few days. It's a hard path to

learn how our kiddos respond...and I'm now learning that it changes... You

are so very much in my thoughts. Martha

Link to comment
Share on other sites

Guest guest

It will get better. I remember when was way beyond this stage but

got a cold and slept and slept so much that I called a friend. I couldn't

bring myself to touch my own child. I had been made to feel that insecure.

Needless to say, my dear not only touched but did me as

well. I started to learn only then how can/does react with certain

illnesses. Let her have an ear infection, she hits herself. Let her have a

cold, and she seems downright dead for a few days. It's a hard path to

learn how our kiddos respond...and I'm now learning that it changes... You

are so very much in my thoughts. Martha

Link to comment
Share on other sites

Guest guest

, I just read 's post and must write yet again. In my

experience, and is now 21, perhaps most professionals don't really

think that parents want to - I don't know what to call it: help, get intimately

involved, add what you will. Even at our beloved Perkins, staff would

almost always ask if I wanted them to do x,y,and z, rather than my doing it.

As I think back over the years, most of the parents I've had contact with

gratefully gave over the care of their child. Andy and I weren't like that and

have had to make that clear for many years. I guess many people deal

with the fear we all face by avoiding dealing with issues. Didn't work for

us. Martha

Link to comment
Share on other sites

Guest guest

-

I'm sorry you had such a scary moment. As far as scary - you've had worse.

But to feel so shaken in your status as a mom -- that's a horrible feeling.

I think most of us have had that feeling of " what next? " Just when you let

your guard down and think you've got a bit of smooth sailing ahead, the wind

gusts you right off your feet. You're doing a great job as mom to both

babies! JD will be more stable, you will learn all the subtleties of his

care, and all will " ok " . Hang in there and know that you are not alone.

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

Link to comment
Share on other sites

Guest guest

Martha-

Good point. This is important for all of us to remember in dealing with

doctors, therapists, and teachers. It's so important for everyone dealing

with our kids to know the degree to which we want to be involved and

informed. Sometimes, when they don't tell us something or teach us or

whatever, it's as you said- - because they think we don't want to know.

As a former teacher, I can tell you that I would communicate with parents

based on what I knew about their parenting style, family, etc. Of course,

some things are a given that you will contact a parent. But if something is

questionable, you want the teacher, doctor, etc to always know you want the

call or the information. We (parents) have to set the stage for the kind of

relationship we want from them. I start every year by introducing myself to

the teacher, letting them know my expectations of my child, and opening our

lines of communication -- this goes for Aubrie and .

It may be hard for us to believe that other parents don't want to know or do

or whatever... but many don't.

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

Re: just need to vent

, I just read 's post and must write yet again. In my

experience, and is now 21, perhaps most professionals don't really

think that parents want to - I don't know what to call it: help, get

intimately

involved, add what you will. Even at our beloved Perkins, staff would

almost always ask if I wanted them to do x,y,and z, rather than my doing it.

As I think back over the years, most of the parents I've had contact with

gratefully gave over the care of their child. Andy and I weren't like that

and

have had to make that clear for many years. I guess many people deal

with the fear we all face by avoiding dealing with issues. Didn't work for

us. Martha

Link to comment
Share on other sites

Guest guest

Martha-

Good point. This is important for all of us to remember in dealing with

doctors, therapists, and teachers. It's so important for everyone dealing

with our kids to know the degree to which we want to be involved and

informed. Sometimes, when they don't tell us something or teach us or

whatever, it's as you said- - because they think we don't want to know.

As a former teacher, I can tell you that I would communicate with parents

based on what I knew about their parenting style, family, etc. Of course,

some things are a given that you will contact a parent. But if something is

questionable, you want the teacher, doctor, etc to always know you want the

call or the information. We (parents) have to set the stage for the kind of

relationship we want from them. I start every year by introducing myself to

the teacher, letting them know my expectations of my child, and opening our

lines of communication -- this goes for Aubrie and .

It may be hard for us to believe that other parents don't want to know or do

or whatever... but many don't.

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

Re: just need to vent

, I just read 's post and must write yet again. In my

experience, and is now 21, perhaps most professionals don't really

think that parents want to - I don't know what to call it: help, get

intimately

involved, add what you will. Even at our beloved Perkins, staff would

almost always ask if I wanted them to do x,y,and z, rather than my doing it.

As I think back over the years, most of the parents I've had contact with

gratefully gave over the care of their child. Andy and I weren't like that

and

have had to make that clear for many years. I guess many people deal

with the fear we all face by avoiding dealing with issues. Didn't work for

us. Martha

Link to comment
Share on other sites

Guest guest

Martha-

Good point. This is important for all of us to remember in dealing with

doctors, therapists, and teachers. It's so important for everyone dealing

with our kids to know the degree to which we want to be involved and

informed. Sometimes, when they don't tell us something or teach us or

whatever, it's as you said- - because they think we don't want to know.

As a former teacher, I can tell you that I would communicate with parents

based on what I knew about their parenting style, family, etc. Of course,

some things are a given that you will contact a parent. But if something is

questionable, you want the teacher, doctor, etc to always know you want the

call or the information. We (parents) have to set the stage for the kind of

relationship we want from them. I start every year by introducing myself to

the teacher, letting them know my expectations of my child, and opening our

lines of communication -- this goes for Aubrie and .

It may be hard for us to believe that other parents don't want to know or do

or whatever... but many don't.

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

Re: just need to vent

, I just read 's post and must write yet again. In my

experience, and is now 21, perhaps most professionals don't really

think that parents want to - I don't know what to call it: help, get

intimately

involved, add what you will. Even at our beloved Perkins, staff would

almost always ask if I wanted them to do x,y,and z, rather than my doing it.

As I think back over the years, most of the parents I've had contact with

gratefully gave over the care of their child. Andy and I weren't like that

and

have had to make that clear for many years. I guess many people deal

with the fear we all face by avoiding dealing with issues. Didn't work for

us. Martha

Link to comment
Share on other sites

Guest guest

Michele,

I just tried to send you a private email about the conference in MO with

your address as it is in my computer address book, but my post was

returned.

Please send me the correct address. If you wouldn't mind, please send

me your phone number again, too. Thanks. Martha

Sorry if I sound a bit stayed or something similar. We're back to 2:30

mornings, and I'm just out of it.

Link to comment
Share on other sites

Guest guest

Michele,

I just tried to send you a private email about the conference in MO with

your address as it is in my computer address book, but my post was

returned.

Please send me the correct address. If you wouldn't mind, please send

me your phone number again, too. Thanks. Martha

Sorry if I sound a bit stayed or something similar. We're back to 2:30

mornings, and I'm just out of it.

Link to comment
Share on other sites

Guest guest

Michele,

I just tried to send you a private email about the conference in MO with

your address as it is in my computer address book, but my post was

returned.

Please send me the correct address. If you wouldn't mind, please send

me your phone number again, too. Thanks. Martha

Sorry if I sound a bit stayed or something similar. We're back to 2:30

mornings, and I'm just out of it.

Link to comment
Share on other sites

Guest guest

hmmmmmmmmm no its not stupid they should be takiong care t tel you what is

going on you should wack them next

>

> Michele,

> I just tried to send you a private email about the conference in MO with

> your address as it is in my computer address book, but my post was

> returned.

> Please send me the correct address. If you wouldn't mind, please send

> me your phone number again, too. Thanks. Martha

> Sorry if I sound a bit stayed or something similar. We're back to 2:30

> mornings, and I'm just out of it.

>

>

>

>

Link to comment
Share on other sites

Guest guest

hmmmmmmmmm no its not stupid they should be takiong care t tel you what is

going on you should wack them next

>

> Michele,

> I just tried to send you a private email about the conference in MO with

> your address as it is in my computer address book, but my post was

> returned.

> Please send me the correct address. If you wouldn't mind, please send

> me your phone number again, too. Thanks. Martha

> Sorry if I sound a bit stayed or something similar. We're back to 2:30

> mornings, and I'm just out of it.

>

>

>

>

Link to comment
Share on other sites

Guest guest

hmmmmmmmmm no its not stupid they should be takiong care t tel you what is

going on you should wack them next

>

> Michele,

> I just tried to send you a private email about the conference in MO with

> your address as it is in my computer address book, but my post was

> returned.

> Please send me the correct address. If you wouldn't mind, please send

> me your phone number again, too. Thanks. Martha

> Sorry if I sound a bit stayed or something similar. We're back to 2:30

> mornings, and I'm just out of it.

>

>

>

>

Link to comment
Share on other sites

Guest guest

,

You did nothing wrong. NOTHING.

As a matter of fact it is that good old mother instinct of yours that knew

something was wrong before they did. That means you are already in tune with

your baby(s). It is terrifying. And these are the memories you will keep with

you no matter how hard you will try to let them go. But you will learn from

this. It is proven that you already have. You know what your baby needs and

why. In this case venting him. Now is the time that you will learn to trust

your reaction to your child's needs. Now is the time you learn that stepping up

and speaking up for your baby is OK. You aren't a pushy mother, and you

aren't wrong to do that. You're a mother. That's all and that's everything.

They will teach you what to do before he leaves and you will quickly become

accustomed to it. Of course you will be fearful. That's natural. But you

will be OK. Please know that sometimes it will feel like you are taking three

steps back just to move one step forward. That will be frustrating but that too

is OK. So is a good cry.

It must be so much harder for you because JD is a twin so you have your

mothering instincts for one child and then you have to totally switch that for

the

other. But you can and will do it. You can and will do a great job.

You are a good mother.

No-you are a great mother. Your mind is already on top of things. So now

just go with your heart. Let that lead you. Don't be afraid to step in and

speak for your child. Nine times out of ten you will be right. For the times

you are wrong, forgive yourself. You are human.

You're a great mother!

Bonnie, Mom to a 23, Patty CHARGE 21, and wife to

Link to comment
Share on other sites

Guest guest

,

You did nothing wrong. NOTHING.

As a matter of fact it is that good old mother instinct of yours that knew

something was wrong before they did. That means you are already in tune with

your baby(s). It is terrifying. And these are the memories you will keep with

you no matter how hard you will try to let them go. But you will learn from

this. It is proven that you already have. You know what your baby needs and

why. In this case venting him. Now is the time that you will learn to trust

your reaction to your child's needs. Now is the time you learn that stepping up

and speaking up for your baby is OK. You aren't a pushy mother, and you

aren't wrong to do that. You're a mother. That's all and that's everything.

They will teach you what to do before he leaves and you will quickly become

accustomed to it. Of course you will be fearful. That's natural. But you

will be OK. Please know that sometimes it will feel like you are taking three

steps back just to move one step forward. That will be frustrating but that too

is OK. So is a good cry.

It must be so much harder for you because JD is a twin so you have your

mothering instincts for one child and then you have to totally switch that for

the

other. But you can and will do it. You can and will do a great job.

You are a good mother.

No-you are a great mother. Your mind is already on top of things. So now

just go with your heart. Let that lead you. Don't be afraid to step in and

speak for your child. Nine times out of ten you will be right. For the times

you are wrong, forgive yourself. You are human.

You're a great mother!

Bonnie, Mom to a 23, Patty CHARGE 21, and wife to

Link to comment
Share on other sites

Guest guest

,

I remember feeling the same way because Kennedy used to do the same thing.

She would get very ANGRY with us, especially when we tried to move her and

she would de-sat and turn blue and hold her breath and just lose it. I

think it's because when she was in bed she was " safe " and that when someone

moved her, etc, it meant something bad could be happening (blood work,

surgery, other nasty miscellaneous hospital " stuff " , etc). Our nurse, who

had been an ICU nurse there for 20 odd years said " you have to pick her up,

even if it seems mean - she needs that bonding and she will get over it

eventually " . She did and I'm glad I listened because I would've just left

her in her bed to keep her from getting upset. They need to know that there

are good touches and positive things can happen when they are moved as

well. It's hard though because you just want them to stay " calm " and

" happy " ... you are NOT a bad mother whatsoever - just persevere and it will

get better. I can certainly remember bawling my head off at the hospital a

few times when it just seemed that nothing was going right, so you're not

alone there. It WILL get better...

Hugs,

--

Weir

kawfolks@...

http://ca.geocities.com/weirfamilyrogers

Link to comment
Share on other sites

Guest guest

,

Could he have had a bronchial spasm (hope that is spelled right)?

What you described is exactly what we have started calling

Cedie's " episodes " . She hasn't really done it in a while, but when

she isn't feeling good it happens more frequently. The doctors call

it a bronchial spasm. She just gets so mad that she clamps down and

it takes mere seconds for everything to go down hill. Cedie loves

to be held but when she is not feeling good she doesn't care who you

are, she does not want to be touched! It breaks my heart each time

she is like that. (My son has always been a " mama's boy " and there

has never been a hurt that mamma could not fix with some loving).

This helpless feeling is really tough to overcome but don't give up

on him or yourself!

It amazes me how JD and Cedie have so much in common and are going

through the same things. I wish we lived closer. We could fight all

the bad nurses (there are good ones :-)) and doctors together!

I hope JD is feeling better soon!

Mock - mom to Dylan (5 yrs old) and Cedie (10 mth old

charger) - wife to (great daddy)

>

> Okay, I know we have felt this way sometime or another regarding

our

> children. Today I felt at fault about sometime and helpless.

and I went to the

> hospital with Olivia to see JD. He was sleeping and doing good.

Olivia was

> getting kinda fussy and loud like most babies do when they want

something and so

> that woke JD up, which was okay. So after I gave Olivia some

juice, I was going

> to let her get in bed with her brother. I gave Olivia to and

was going

> to move JD over just a little bit like I have always done. In the

pass I have

> always been able to move him around the bed with nothing

happening. He started

> getting a little bit mad but something else looked different.

Another RT and

> another nurse came in (his RT and Nurse were with other patients)

and just

> said that he was just mad. I just kept saying that his color

doesn't look good,

> something is wrong. Something was not right within seconds JD

stopped

> breathing, OMG they had to bag him and get him to calm down. We

walked out of the room

> and I just kept thinking " what did I do " , " I feel like a bad

mom " , " All I

> did was just move him a little bit. " I took Olivia and went off to

a quite area

> and just balled my eyes out. found me and said that it

wasn't my fault

> and that JD , when he gets mad, he clamps up and doesn't know what

to do and

> over does it. When they got him calmed down, he was still

breathing around 117

> breathes per minute but his O2 was in the 90's and heart-rate was

okay. The

> on-call doctor came in while the RT did a breathing treatment. I

don't know much

> about this but when JD was at Our Children's House I always empty

his water

> out that came out of his venting tube. Now he has a different one

and I don't

> think that it was being emptied. If the water gets back up in the

tubing and

> into his trach that can cause him to Exasperate and this is what

the doctors said

> that might have happened when I moved him. If this in the case

then why don't

> they check it or teach us, the parents, how to do it. I would be

glad to do

> it. I don't want something like this to happen again. has

not been too

> happy with this floor because of us not being called when JD went

into Res.

> Distress last time. I am going to call in the morning and have

JD's Pulmatory

> doctor call me and talk about all of this. They had been talking

about him going

> back to Our Children's House sometime this week, so is this going

to be a set

> back since they are starting to order Chest X-rays, Blood

Gasses..ect? I just

> feel so helpless right now and scared that if I pick up to hold my

son then

> something else will happen. I was just getting over my fears of

all of this and

> getting very comfortable holding him, changing him, bathing him,

dressing him.

> I hope this gets better

>

>

>

> & , parents to Olivia and JD(CHARGE: Choanal Atresia,

Heart

> Repair, TE-F Repair, G-Tube, Trach , Hernia Repair and A Happy

Little Man ) 7months

>

>

>

Link to comment
Share on other sites

Guest guest

and -

You guys are reminding me of those days in infancy when Aubrie had to

console herself. She would not calm to our touch when she was very upset.

It was so hard to leave her alone when every instinct told me to cuddle her

up! It was even harder for my mom. What we did is cuddle and hold her when

she was calm. We took every opportunity to touch her and get her used to

that. But when she was upset, we let her be. It would have been so

invasive to stop her self-soothing and demand that she be held at those

moments. Really, what a skill for a baby to have developed already! I

didn't have a choice-- if we intervened in those crisis moments, it would

escalate out of control. So I respected her intense need and allowed her

space -- but as soon as she was calm, I held and cuddled her. Now she is

still, at age 8, my little cuddle muffin. She asks to be hugged all the

time. However, when she's sick or upset, she often prefers to be alone and

calm herself.

In all areas of her sensory defensiveness -- we pushed her limits very

gently and respectfully. She has now overcome most of it. It's all still

there -- but it's not a big part of her life. I think it's part of her

difficulty focusing tho. I imagine that her sensory systems still get

overloaded and need to shut down and relax. We just don't see the outward

signs of daily stress so obviously as we used to. Another reason that all

of the professionals on her team need to understand where our kids have come

from. If people working with Aubrie don't know about her sensory history,

they won't understand that shutting down or those sensory needs. But if you

know her history, it all makes perfect sense.

Rambling... sorry...

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

Link to comment
Share on other sites

Join the conversation

You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

Loading...
×
×
  • Create New...