Post by Amy Lombardi on Mar 31, 2009 10:55:55 GMT -5
Subject: Weekend Respite
Name: Shannon
Date Posted: Oct 28, 08 - 7:45 AM
Email: Click here to Email
Message: Today I received an email from our social worker letting me know that there is an opening at a children's home in a nearby town for weekend respite. It would be one weekend a month. I talked to my husband about it and he immediately said no. I bear the brunt of the weekend care for our son and it sounded like a great idea to me. Family always say they are willing to help, but we seem to have trouble getting the help unless we are obligated to go somewhere. We can't get a break if we need to get groceries or take our other child to a movie, etc.. I don't want to be a bad parent for doing this, but I also need to keep my sanity and keep the household together. We spend a lot of time driving around in our car because nothing else keeps our son happy. He screams and cries a lot. He seems to do good at school. Our social worker said that openings don't happen very often so the chances of it opening in the future are small. What do you think??
Name: Eric
Date Posted: Oct 28, 08 - 10:47 AM
Message: GO FOR IT. You need a break and this sounds like a great safe option. Does your husband have trouble letting go and rely on a stranger to care for your child?
Maybe try it for one weekend and see how it goes? many times we shy away out of fear and then realize "what was I thinking.......this was great".
You would be doing yourself and your child a favor by doing this. If you have unaffected children home they will love it more. They will have Mom and dad to themselves. Its real impportant for the sibs too.
C'mon Dad go for it
Name: Darlene Royalty
Date Posted: Oct 28, 08 - 10:55 AM
Email: Click here to Email
Message: Shannon, I am a mother of two girls with Battens, (my third daughter, Sandy passed away last Sept. 1st) Amber is 27 & Sarah is 23 and I have no worries about getting a day care person so Randy and I can get away. If this children's home is equipped to handle your son and they will be good to him, in my experience it is good for the child to get away too. But you have to do what is in the best interest of your family. If your husband doesn't want to do this, maybe he can stay home so you can get away more. Like you say you have other children you have to give time to and you can only go in so many different directions. I hope you and your husband can find a common ground to help you find the peace of mind you need to continue in your long journey.
But in the end it is a choice only you can make. Good luck
Name: Nori
Date Posted: Oct 28, 08 - 2:05 PM
Email: Click here to Email
Message: The best thing you can do for your child and your marriage is to take care of yourself. Regarding this subject Winston Churchill once said, "It is hard to expect an empty bag to stand up straight." Unless you fill your own needs, you will have nothing left to give to your children or your husband.
Also, you have an obligation to your other child who occasionally needs Mom and Dad to himself and to be able to do "normal" things that your Batten child cannot do. The last thing you want is for him to grow up resenting his brother.
I raised two boys with JNCL and four other children. I honestly don't know how I would have retained my sanity without Respite care for Tyson and Timmy. Belive me, it is worth anything you have to do to take care of yourself. You still have a long road ahead of you. You will not be a "bad mother" but rather a better mother, wife, friend, daughter, sister and every other hat you wear, if you take the time to take care of your own needs.
Good Luck!
Name: Glenda Flatt
Date Posted: Oct 29, 08 - 5:17 AM
Email: Click here to Email
Message: You sound exactly like my situation. My son goes to school so I do have my days open, but what I would give for a weekend evening off with my husband.
We do get Respite funding, but we can't even get anyone to sit with Nicholas for a few hours and pay them!!! Everyone says to call them(that's easy to say), but when it comes down to actually staying no one has time.
So I say go for it!!
Glenda
Somerset,KY
Name: Tanya
Date Posted: Oct 29, 08 - 3:20 PM
Email: Click here to Email
Message: I was just the opposite... My husband suggested help and I would not do it because I thought everything was going fine. Then I realized I was doing a great job caring for our oldest son with Battens, but my other two children(one also suffering with the disease)were missing out on their mom time. I finally asked for help and it was the best thing for all of us. It is nice to be able to go to a movie and know that ALL the kids are taken care of and that I can take a break from it all. I have been told you have to take care of yourself before you can take care of anyone else. So, I would encourage you to take this opportunity and try it out.
Date Posted: Oct 29, 08 - 11:37 PM
Email: Click here to Email
Message: hello! is in home respite available for you--that would be for someone staying with your child at your home and then letting you do other things---i tried the out of home respite but i didn't like it and neither did the kids--they liked playing and being at home--more comfortable--
my girls get personal care attendant hours everyday and also in home respite--they get 30 days a year--my husband go on the weekends a couple times a year but we have every friday night to do things together--just for dinner or a movie--
in our state we have the ability to hire our workers ourself--i have family members right now helping us--2 brothers but have had others in the past--
if you take a break and have out of home respite and worry all the time its not worth it--the out of home respite has always worried me and my husbund-- Peg
Name: lincldad
Date Posted: Oct 30, 08 - 4:13 AM
Email: Click here to Email
Message: Do it. (assuming the facility is capable)
Name: Debbie Smith
Date Posted: Oct 30, 08 - 7:05 PM
Email: Click here to Email
Message: i was the one who would never want to put my daughter into respite care but i did and i havent looked back. but if you dont try you will never know. Shania goes to respite care and its good for her as well as for me as i can work spend more time with my other children or just sit back and relax have my time which we all need.
Name: Shannon
Date Posted: Oct 28, 08 - 7:45 AM
Email: Click here to Email
Message: Today I received an email from our social worker letting me know that there is an opening at a children's home in a nearby town for weekend respite. It would be one weekend a month. I talked to my husband about it and he immediately said no. I bear the brunt of the weekend care for our son and it sounded like a great idea to me. Family always say they are willing to help, but we seem to have trouble getting the help unless we are obligated to go somewhere. We can't get a break if we need to get groceries or take our other child to a movie, etc.. I don't want to be a bad parent for doing this, but I also need to keep my sanity and keep the household together. We spend a lot of time driving around in our car because nothing else keeps our son happy. He screams and cries a lot. He seems to do good at school. Our social worker said that openings don't happen very often so the chances of it opening in the future are small. What do you think??
Name: Eric
Date Posted: Oct 28, 08 - 10:47 AM
Message: GO FOR IT. You need a break and this sounds like a great safe option. Does your husband have trouble letting go and rely on a stranger to care for your child?
Maybe try it for one weekend and see how it goes? many times we shy away out of fear and then realize "what was I thinking.......this was great".
You would be doing yourself and your child a favor by doing this. If you have unaffected children home they will love it more. They will have Mom and dad to themselves. Its real impportant for the sibs too.
C'mon Dad go for it
Name: Darlene Royalty
Date Posted: Oct 28, 08 - 10:55 AM
Email: Click here to Email
Message: Shannon, I am a mother of two girls with Battens, (my third daughter, Sandy passed away last Sept. 1st) Amber is 27 & Sarah is 23 and I have no worries about getting a day care person so Randy and I can get away. If this children's home is equipped to handle your son and they will be good to him, in my experience it is good for the child to get away too. But you have to do what is in the best interest of your family. If your husband doesn't want to do this, maybe he can stay home so you can get away more. Like you say you have other children you have to give time to and you can only go in so many different directions. I hope you and your husband can find a common ground to help you find the peace of mind you need to continue in your long journey.
But in the end it is a choice only you can make. Good luck
Name: Nori
Date Posted: Oct 28, 08 - 2:05 PM
Email: Click here to Email
Message: The best thing you can do for your child and your marriage is to take care of yourself. Regarding this subject Winston Churchill once said, "It is hard to expect an empty bag to stand up straight." Unless you fill your own needs, you will have nothing left to give to your children or your husband.
Also, you have an obligation to your other child who occasionally needs Mom and Dad to himself and to be able to do "normal" things that your Batten child cannot do. The last thing you want is for him to grow up resenting his brother.
I raised two boys with JNCL and four other children. I honestly don't know how I would have retained my sanity without Respite care for Tyson and Timmy. Belive me, it is worth anything you have to do to take care of yourself. You still have a long road ahead of you. You will not be a "bad mother" but rather a better mother, wife, friend, daughter, sister and every other hat you wear, if you take the time to take care of your own needs.
Good Luck!
Name: Glenda Flatt
Date Posted: Oct 29, 08 - 5:17 AM
Email: Click here to Email
Message: You sound exactly like my situation. My son goes to school so I do have my days open, but what I would give for a weekend evening off with my husband.
We do get Respite funding, but we can't even get anyone to sit with Nicholas for a few hours and pay them!!! Everyone says to call them(that's easy to say), but when it comes down to actually staying no one has time.
So I say go for it!!
Glenda
Somerset,KY
Name: Tanya
Date Posted: Oct 29, 08 - 3:20 PM
Email: Click here to Email
Message: I was just the opposite... My husband suggested help and I would not do it because I thought everything was going fine. Then I realized I was doing a great job caring for our oldest son with Battens, but my other two children(one also suffering with the disease)were missing out on their mom time. I finally asked for help and it was the best thing for all of us. It is nice to be able to go to a movie and know that ALL the kids are taken care of and that I can take a break from it all. I have been told you have to take care of yourself before you can take care of anyone else. So, I would encourage you to take this opportunity and try it out.
Date Posted: Oct 29, 08 - 11:37 PM
Email: Click here to Email
Message: hello! is in home respite available for you--that would be for someone staying with your child at your home and then letting you do other things---i tried the out of home respite but i didn't like it and neither did the kids--they liked playing and being at home--more comfortable--
my girls get personal care attendant hours everyday and also in home respite--they get 30 days a year--my husband go on the weekends a couple times a year but we have every friday night to do things together--just for dinner or a movie--
in our state we have the ability to hire our workers ourself--i have family members right now helping us--2 brothers but have had others in the past--
if you take a break and have out of home respite and worry all the time its not worth it--the out of home respite has always worried me and my husbund-- Peg
Name: lincldad
Date Posted: Oct 30, 08 - 4:13 AM
Email: Click here to Email
Message: Do it. (assuming the facility is capable)
Name: Debbie Smith
Date Posted: Oct 30, 08 - 7:05 PM
Email: Click here to Email
Message: i was the one who would never want to put my daughter into respite care but i did and i havent looked back. but if you dont try you will never know. Shania goes to respite care and its good for her as well as for me as i can work spend more time with my other children or just sit back and relax have my time which we all need.