Forums
New posts
Search forums
What's new
New posts
New profile posts
Latest activity
Internet Search
Members
Current visitors
New profile posts
Search profile posts
Log in
Register
What's new
Search
Search
Search titles only
By:
New posts
Search forums
Menu
Log in
Register
Install the app
Install
Forums
Parent Support Forums
General Parenting
How do you survive?
JavaScript is disabled. For a better experience, please enable JavaScript in your browser before proceeding.
You are using an out of date browser. It may not display this or other websites correctly.
You should upgrade or use an
alternative browser
.
Reply to thread
Message
<blockquote data-quote="raraavis" data-source="post: 708729" data-attributes="member: 20646"><p>Thank you all for you support and input. You have given me really good suggestions. No, I have not looked into the respite care, but I will. We have no family here other than my mom who lives with us, so DS is always with us. He has zero friends, has not played with a child in over a year, so he cannot go anywhere for a playdate or a sleepover.</p><p>Our world has gotten smaller and smaller, it is just us. Friends prefer to only call, they do not want their kids around our son. We cannot go anywhere with him, because it is actually a waste of money and it is even worse and more stressful than at home. We love to travel, socialize, used to go out every weekend with friends and their children, but not anymore. We are now completely isolated. Part of it is by choice because both my husband and I are severely depressed, despite both being on antidepressants.</p><p>I do own both versions (the old and the new) of the Explosive Child and maybe other 30 books of how to raise children like my son, but any strategies we use work only for 1-2 days max. It is true that our patience is very limited lately and we give up easily. I am currently reading "How to talk so kids will listen and how to listen so kids will talk" and I promised myself to try my best to keep calm and implement the strategies for as long as possible.</p><p>Yes, I do believe that he will wreck our lives completely, but I feel there is nothing I can do to stop that. We have tried everything we can think of, spent an enormous amount of resources on his therapies over the last 4 years, but things are getting worse. However, I just do not envision placing him in a residential center at this time The health issues make decisions like this very unlikely even in the future. I love him with all my heart, but I also have a lot of resentment towards him even though I am completely aware that he is a very sick child and is not his fault at all.</p><p>[USER=11832]@pigless in VA[/USER] and [USER=1631]@Wiped Out[/USER] . Thank you so much for sharing your sons journeys. I so needed to hear that there is still a chance (however small) that my son may not be completely lost and that a miracle might happen for him and for us.</p><p>[USER=12511]@ksm[/USER] we have done the DNA test for the medications and everything was normal, he is a normal metabolizer for everything. I am not sure what the SED stands for? The medical card sounds great.</p><p>He does have an IEP, we hired an advocate, will have another ARD meeting on Thursday. The teachers seem extremely nice and eager to help as much as they can, even more than what we asked for. They seem genuinely interested in helping us as they know we are very committed parents and the whole situation is just so sad. I do think that the eye tumor and the chemo have made things worse, but they were never good to begin with. It just pushed things to a whole new level of tragic. He is pale, his hair is falling like crazy, but is just as full of energy. I oscillate between being mad at him for being so out of control to being utterly heartbroken for what he has to go though with the chemo and what a hard life he has and will have. He is not even 6 yet... It is just a very complex and sad situation...</p></blockquote><p></p>
[QUOTE="raraavis, post: 708729, member: 20646"] Thank you all for you support and input. You have given me really good suggestions. No, I have not looked into the respite care, but I will. We have no family here other than my mom who lives with us, so DS is always with us. He has zero friends, has not played with a child in over a year, so he cannot go anywhere for a playdate or a sleepover. Our world has gotten smaller and smaller, it is just us. Friends prefer to only call, they do not want their kids around our son. We cannot go anywhere with him, because it is actually a waste of money and it is even worse and more stressful than at home. We love to travel, socialize, used to go out every weekend with friends and their children, but not anymore. We are now completely isolated. Part of it is by choice because both my husband and I are severely depressed, despite both being on antidepressants. I do own both versions (the old and the new) of the Explosive Child and maybe other 30 books of how to raise children like my son, but any strategies we use work only for 1-2 days max. It is true that our patience is very limited lately and we give up easily. I am currently reading "How to talk so kids will listen and how to listen so kids will talk" and I promised myself to try my best to keep calm and implement the strategies for as long as possible. Yes, I do believe that he will wreck our lives completely, but I feel there is nothing I can do to stop that. We have tried everything we can think of, spent an enormous amount of resources on his therapies over the last 4 years, but things are getting worse. However, I just do not envision placing him in a residential center at this time The health issues make decisions like this very unlikely even in the future. I love him with all my heart, but I also have a lot of resentment towards him even though I am completely aware that he is a very sick child and is not his fault at all. [USER=11832]@pigless in VA[/USER] and [USER=1631]@Wiped Out[/USER] . Thank you so much for sharing your sons journeys. I so needed to hear that there is still a chance (however small) that my son may not be completely lost and that a miracle might happen for him and for us. [USER=12511]@ksm[/USER] we have done the DNA test for the medications and everything was normal, he is a normal metabolizer for everything. I am not sure what the SED stands for? The medical card sounds great. He does have an IEP, we hired an advocate, will have another ARD meeting on Thursday. The teachers seem extremely nice and eager to help as much as they can, even more than what we asked for. They seem genuinely interested in helping us as they know we are very committed parents and the whole situation is just so sad. I do think that the eye tumor and the chemo have made things worse, but they were never good to begin with. It just pushed things to a whole new level of tragic. He is pale, his hair is falling like crazy, but is just as full of energy. I oscillate between being mad at him for being so out of control to being utterly heartbroken for what he has to go though with the chemo and what a hard life he has and will have. He is not even 6 yet... It is just a very complex and sad situation... [/QUOTE]
Insert quotes…
Verification
Post reply
Forums
Parent Support Forums
General Parenting
How do you survive?
Top