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,

I have felt so many of the same feelings. It's one thing to know you have

the stress in your life, but I don't think we truly realize how stressful it

is until we have an extended break from our kids. About 4 years ago,

was invited to attend a camp for kids with disabilities. They offered the

one on one that she needs. I had a very hard time leaving her that first

year, but now I look forward to her attending. I get a break and she seems

to really enjoy herself. It's 4 hours away so she only goes once a year.

Last year when things with the school became very difficult, 's

attorney told me about an Ill and Handicapped Waiver here in Iowa. I didn't

want help that way, but I looked into it. We disqualified for everything

else so qualified for this waiver on her income and disabilities.

Under this waiver, we receive respite services. I still had reservations

about using the respite. We have always worked so hard to include in

everything that I didn't want to start feeling like we were excluding her

from things by leaving her with a care giver. But, after finally receiving

the services, I realized that she is benefiting from it as much as I am. It

has been difficult finding providers that will care for and be

willing to drive out here to our house. But finally the agency found 2 that

have worked out really well. During the summer I got around 5 to 6 hours a

day, three days a week. We also worked into her plan that she receives one

out of home weekend a month and an additional week of camp during the summer.

Every year my husband and I take a week of vacation on the motorcycle. No

kids and no stress. This year, with the second week of camp for it

allowed us to take our son on our trip. We knew that we could enjoy

ourselves and not feel guilty about leaving behind. She was having a

wonderful week at camp doing what she enjoys and we were able to enjoy our

son without being stressed out over what was doing. I have to agree

with , my son is wonderful with his sister. I rely on him so much to

help with Jess. He does it without even realizing he is helping. He is a

little older than Jess and loves her to death.

What state do you live in? Have you checked to see if there are any waivers

that you could get that will offer respite hours for you? I hope you are

able to find a camp that will be able to provide the one on one. Good luck!

Sheryl, Mom to Mitch 14 and 13 CHARGE

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Sheryl,

Do you know if there is such a waiver in Michigan? Tim maybe

this could be something Beth to research for us. I have noticed that

individuals OTHER than parents can get much more information quicker too! Sad

but true.

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,

Sorry to hear about the camp not wanting to take her back. Where are you from? Maybe someone here will know of a place or something around you. I have read a couple issues of Exceptional Parent magazine and there seems to be more options in the States than here in Canada for things like that. Maybe you could look in some magazines like that, they are chock full of advertisements about places for the kids to go. I'm sure it would take a lot of research and checking into the places but you may luck out. Sorry I can't be of more help with that.

I know how you feel with the time consumption thing and the other kids, maybe it's a bit easier with me because my sons are older and your other 2 are younger, it must be harder. My boys are really really good about everything, they just love their little sissy to pieces and help me look after her, I'm actually less stressed when they are home as they are such a help. I'm glad you had a nice vacation though and a much needed break. Do you get respite care at all? Sounds like you could really use some regular breaks from Katelyn, both for her and you.

Good luck with everything,

Mom to Kennedy 2.5yr old CHARGEr, 11, 9, and wife to GraemeNew Brunswick, CanadaVisit the "Weir homepage" at: http://www.geocities.com/SunsetStrip/Palms/5716ICQ #1426476

return from camp

Hello to all,

I have not written for a while. I have been a silent listener,, but now need the opportunity to talk.

I just sent Katelyn to camp for one week. It was a camp for kids that are deaf and hard of hearing. Katelyn is almost 10. I have never sent her away before. I realized a couple of things. One, that Katelyn causes our family much stress. We took a family vacation without her. It was so easy without her. I didn't have to worry about how Katelyn was going to act. I didn't have to worry about my husband becoming upset because Katelyn was making a social specticle of herself and everyone was staring at us. We could negotiate with our other children and do somethings that my husband and I enjoy. It was so relaxing. I never realized how much stress I am under on a daily basis.

I also realized that she consumes more of my time than my other two children put together. Is that fair to them?

I called the camp tonight and talk with the director. I ask him if they would take Katelyn again. He did not say he would. He wanted to find a camp that would be more approriate for her. They needed to use 1:1 all week and he said that they are not staffed for that. He said that if they could not find another camp, that they would try again. I felt sad. Once again rejected. Poor kid. Is there a place for our kid? I place where I don't have to explain everything. A place where I can have a break without worry?

Well back to reality. Katelyn will have a sinus procedure this week. I can't wait to hang out in a hospital all week.

Katelyn (9)CHARGE, Jenna(5), Shayna(3)"5th CHARGE Syndrome International Conference, Indianapolis, Indiana, July20-22, 2001. Information will be available first in CHARGE Accounts, theCHARGE Syndrome Foundation's newsletter."For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter)please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org

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-

I can relate to your feelings about Katelyn taking so much time and

effort. We went to Six Flags last weekend with just my husband, son,

and me. It was so relaxing for me!! Aubrie would have enjoyed

it and we discussed taking her, but I would have been the one to suffer.

My day would have been spent worrying about taking care of her. And

she's not even that "difficult". I mean, she doesn't have a feeding

tube or a trach, she doesn't have behavior problems, etc. But...

she is demanding and takes a lot of my attention. I'm so glad

that you were able to have a break! I hope that you are able to arrange

them periodically. Good luck!

Michele W

mom to Aubrie (2.5 yrs) CHaRgE and (8 yrs), wife to DJ, in IL

west@...

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I just read your post. I don't know where you live but, here in Montreal,

Quebec, Canada we have the Montreal Association for the Blind Summer Camp.

Which takes all kinds of children on a 1:1 ratio, no question about it. It has

become part of our life here and I really don't know what I would do without it.

They even provide babysitting services in your home if you'd like a day/night

out.

>

> <!DOCTYPE HTML PUBLIC " -//W3C//DTD HTML 4.0 Transitional//EN " >

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> <META content= " text/html; charset=iso-8859-1 " http-equiv=Content-Type>

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> <BODY bgColor=#ffffff>

> <DIV><FONT face=Arial size=2>Hello to all,</FONT></DIV>

> <DIV><FONT face=Arial size=2> & nbsp; I have not written for a while. & nbsp; I

have

> been a silent listener,, but now need the opportunity to talk.</FONT></DIV>

> <DIV><FONT face=Arial size=2> & nbsp; I just sent Katelyn to camp for one

> week. & nbsp; It was a camp for kids that are deaf and hard of hearing. & nbsp;

> Katelyn is almost 10. & nbsp; I have never sent her away before. & nbsp; I

realized

> a couple of things. & nbsp; One, that Katelyn causes our family much

stress. & nbsp;

> We took a family vacation without her. & nbsp; It was so easy without her. & nbsp;

I

> didn't have to worry about how Katelyn was going to act. & nbsp; I didn't have

to

> worry about my husband becoming upset because Katelyn was making a social

> specticle of herself and everyone was staring at us. & nbsp; We could negotiate

> with our other children and do somethings that my husband and I enjoy. & nbsp;

It

> was so relaxing. & nbsp; I never realized how much stress I am under on a daily

> basis. & nbsp; </FONT></DIV>

> <DIV><FONT face=Arial size=2> & nbsp; I also realized that she consumes more of

my

> time than my other two children put together. & nbsp; Is that fair to

> them?</FONT></DIV>

> <DIV><FONT face=Arial size=2> & nbsp; I called the camp tonight and talk with

the

> director. & nbsp; I ask him if they would take Katelyn again. & nbsp; He did not

say

> he would. & nbsp; He wanted to find a camp that would be more approriate for

> her. & nbsp; They needed to use 1:1 all week and he said that they are not

staffed

> for that. & nbsp; He said that if they could not find another camp, that they

> would try again. & nbsp; I felt sad. & nbsp; Once again rejected. & nbsp; Poor kid.

Is

> there a place for our kid? & nbsp; I place where I don't have to explain

> everything. & nbsp; A place where I can have a break without worry?</FONT></DIV>

> <DIV><FONT face=Arial size=2> & nbsp; Well back to reality. & nbsp; Katelyn will

> have a sinus procedure this week. & nbsp; I can't wait to hang out in a hospital

> all week. & nbsp; </FONT></DIV>

> <DIV><FONT face=Arial size=2></FONT></DIV>

> <DIV><FONT face=Arial size=2>Katelyn (9)CHARGE, & nbsp; Jenna(5),

> Shayna(3)</FONT></DIV>

>

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>

> <br>

> <tt>

> & quot;5th CHARGE Syndrome International Conference, Indianapolis, Indiana,

July<BR>

> 20-22, 2001. Information will be available first in CHARGE Accounts, the<BR>

> CHARGE Syndrome Foundation's newsletter. & quot;<BR>

> <BR>

> For information about the CHARGE Syndrome <BR>

> Foundation or to become a member (and get the newsletter)<BR>

> please contact marion@... or visit <BR>

> the CHARGE Syndrome Foundation web page <BR>

> at <a

href= " http://www.chargesyndrome.org " >http://www.chargesyndrome.org</a></tt>

> <br>

>

> </BODY></HTML>

__________________________________________________________

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,

Do you get any Respite Care in your area? It might be an idea if there is

Respite available to you to have them take Katelyn for a day or two every now

and then. It would give you all a break and you would have an opportunity to

do all the " normal " things with your other children and just unwind for a

while.

Elaine mum to Elise (8yrs) & Jack (3yrs) CHaRGE

Dumfries,Scotland

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Re: return from camp

> ,

> I have felt so many of the same feelings. It's one thing to know you have

> the stress in your life, but I don't think we truly realize how stressful

it

> is until we have an extended break from our kids. About 4 years ago,

> was invited to attend a camp for kids with disabilities. They offered the

> one on one that she needs. I had a very hard time leaving her that first

> year, but now I look forward to her attending. I get a break and she

seems

> to really enjoy herself. It's 4 hours away so she only goes once a year.

>

> Last year when things with the school became very difficult, 's

> attorney told me about an Ill and Handicapped Waiver here in Iowa. I

didn't

> want help that way, but I looked into it. We disqualified for everything

> else so qualified for this waiver on her income and disabilities.

> Under this waiver, we receive respite services. I still had reservations

> about using the respite. We have always worked so hard to include

in

> everything that I didn't want to start feeling like we were excluding her

> from things by leaving her with a care giver. But, after finally

receiving

> the services, I realized that she is benefiting from it as much as I am.

It

> has been difficult finding providers that will care for and be

> willing to drive out here to our house. But finally the agency found 2

that

> have worked out really well. During the summer I got around 5 to 6 hours

a

> day, three days a week. We also worked into her plan that she receives

one

> out of home weekend a month and an additional week of camp during the

summer.

>

>

> Every year my husband and I take a week of vacation on the motorcycle. No

> kids and no stress. This year, with the second week of camp for

it

> allowed us to take our son on our trip. We knew that we could enjoy

> ourselves and not feel guilty about leaving behind. She was

having a

> wonderful week at camp doing what she enjoys and we were able to enjoy our

> son without being stressed out over what was doing. I have to

agree

> with , my son is wonderful with his sister. I rely on him so much to

> help with Jess. He does it without even realizing he is helping. He is a

> little older than Jess and loves her to death.

>

> What state do you live in? Have you checked to see if there are any

waivers

> that you could get that will offer respite hours for you? I hope you are

> able to find a camp that will be able to provide the one on one. Good

luck!

>

> Sheryl, Mom to Mitch 14 and 13 CHARGE

>

>

> " 5th CHARGE Syndrome International Conference, Indianapolis, Indiana, July

> 20-22, 2001. Information will be available first in CHARGE Accounts, the

> CHARGE Syndrome Foundation's newsletter. "

>

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter)

> please contact marion@... or visit

> the CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

> Sheryl and all

Thanks for your comments. That is why I love this group because I know

that all of you are in the same boat as I am.

We do have respite care and PCA. We had a very nice summer school

program along with an intervenor through Deafblind services. I think that

this has been the easiest summer I have had, even though I pulled Katelyn

from school in May.

I am concerned about the stress that it causes. I didn't have a headache

all vacation and now the daily HA have returned.

We were just at a family gathering. Katelyn was horrible. stomping her

feet. hitting and pinching. Then you have to here from the family " i dont

know how you do it " . I just tell them sometimes I don't. I often wonder

why I never hear them offer to help?

Well off to the doctor this week. I hope that we can help her with her

headaches. Makes her a better person to live with.

Thanks for the ear.

Katelyn(9), Jenna(5), and Shayna(3)

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Hello ,

I haven't written for awhile either! I am the Mom of , 15, and I

just want you to know that I hear and feel all that you have written. I

also sometimes wonder about our society...the stares, etc. but then an

angel will appear out of the crowd and tell us how beautiful is or

she will do something wonderful to restore my hope!

This summer was stressful for our family as we had to prepare my

mother-in-laws home for sale and visit my aging parents..alot of

traveling and working. (Thank heavens for SCHOOL!!!) One day when I was

ready to quit, got in the pool..a little belly flop and starting

" swimming " ( you have to see this stroke!)..she is now finally

completely water safe:)!

I am seriously considering behavior meds..something we have never done

...for . I think she needs something to pull her together and to

help her in society. She is getting older and will be moving on to

supported living in a few years. Also our family needs a break. I also

think sometimes she is terribly frustrated.Often my other kids remind me

that is having a tough time and that is ok..we all need to back

off and take a deep breath.

I wish you peace today. Katelyn is fortunate to have you as her Mom and

I thank you for your honesty! Just want you to know I am listening...

Jackie Kenley in San Francisco, Mom to 21, nah 17 and 15

> Joe Steve wrote:

>

> Hello to all,

> I have not written for a while. I have been a silent listener,, but

> now need the opportunity to talk.

> I just sent Katelyn to camp for one week. It was a camp for kids

> that are deaf and hard of hearing. Katelyn is almost 10. I have

> never sent her away before. I realized a couple of things. One, that

> Katelyn causes our family much stress. We took a family vacation

> without her. It was so easy without her. I didn't have to worry

> about how Katelyn was going to act. I didn't have to worry about my

> husband becoming upset because Katelyn was making a social specticle

> of herself and everyone was staring at us. We could negotiate with

> our other children and do somethings that my husband and I enjoy. It

> was so relaxing. I never realized how much stress I am under on a

> daily basis.

> I also realized that she consumes more of my time than my other two

> children put together. Is that fair to them?

> I called the camp tonight and talk with the director. I ask him if

> they would take Katelyn again. He did not say he would. He wanted to

> find a camp that would be more approriate for her. They needed to use

> 1:1 all week and he said that they are not staffed for that. He said

> that if they could not find another camp, that they would try again.

> I felt sad. Once again rejected. Poor kid. Is there a place for our

> kid? I place where I don't have to explain everything. A place where

> I can have a break without worry?

> Well back to reality. Katelyn will have a sinus procedure this

> week. I can't wait to hang out in a hospital all week.

>

> Katelyn (9)CHARGE, Jenna(5), Shayna(3)

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

>

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

>

> " 5th CHARGE Syndrome International Conference, Indianapolis, Indiana,

> July

> 20-22, 2001. Information will be available first in CHARGE Accounts,

> the

> CHARGE Syndrome Foundation's newsletter. "

>

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter)

> please contact marion@... or visit

> the CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

--

Jackie Kenley, CDBS

(inside CA only)

ext 21

hm.

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