Join the Meeting Place for Moms!
Talk to other moms, share advice, and have fun!

(minimum 6 characters)

Autism - Support Across the Spectrum Autism - Support Across the Spectrum

we are trying...really really trying..but feeling like its still not enough!

Posted by on Oct. 8, 2012 at 11:10 PM
  • 40 Replies
1 mom liked this

I've had some real discouraging moments lately in the care with RJ.  I just feel like everything we are trying to do for him are foreshadowed and unimportant to his parents and his case worker.  We are trying to advocate for him and are being told that its not our decision.  His case manager is telling and talking all the time with his family...instead of asking us what works for us and what's the best for RJ.  When i disagree with her she tells me its ultimately her decision what he will and will not do..or when he will or will not do it.  I understand this as RJ is a ward of the state and I am only his caregiver.   But with autism I do havea lot to say about and for RJ.  I understand his disorder and know what works best for him and yes and I am thinking of the chaos she and his family are causing us!  I get real frustruated by her attitude lately and don't even get me started AGAIN on his  deadbeat parents.  ugh ugh ugh!!   

I knew careing for him was going to be a thankless job and top of that we are not being compensated at all for his care..not from his parents or the state.  It seems that the wonderful care we are providing him is insignificant!  I realize this is my job...to do it with an open heart and for no reward in the end.  My brain tells me this...but my other naughty brain tells me that these people should be more thankful and caring for the ultimate sacrifice we are making for RJ and his parents.  On top of that the state would be paying buko bucks to have him in a center with special attention for autism. 

Now his behaviors are in overdrive again and I see his parents, school and case manager leaning on us for the reason they are becomming prevalent again.  We are trying to return our life to normalcy again...like going to church every sunday (together) with church in the pm sometimes and wed night bible studies...which these do not fit in so good with his 8p bedtime routines.  Our faith also needs to be protected and he and they are severely interfereing with this.  I believe its gods will we go and together as a family is important.  RJ needs to adjust now... and everyone needs to be supportive of this for us.  The pants wetting , swearing, and name calling gets very overwhelming and time consuming.  I cannot help these things,,really they are out of our control and we can only deal with them as they come.  with not many ways to correct these problems it takes time.  I would correct my child with a spanking...which is frowned upon...but would make them absolete with caring and loving (yes) physical discipline.  it would work for him....i believe.

I guess, you could say, i'm totally feeling sorry for myself and family.  Yes I totally am.  we had the weekend before last off from him and can i say it was complete and utter JOY.  That's mean I know.  It was so great to have normalcy and no watching over your shoulder all the time.  I know all the progress RJ has made is mainly because of him staying here...so I know we have made a difference for him...but now i'm questioning if we really are what's best for him.  To reunite with his family, i think, he really needs someone to help him through this and I do not think I can do that for him.  I cannot watch, nor put up with, the gut wrenching and obscene behaviors and visits/therapy he will go thru...all for his parents to never be able to handle him.  Hell, I've got it going on...and look what kind of a state i'm in   :(  :0  :> 

by on Oct. 8, 2012 at 11:10 PM
Add your quick reply below:
You must be a member to reply to this post.
Replies (1-10):
jaydensmom1726
by Bronze Member on Oct. 8, 2012 at 11:20 PM

he is old enought to be in a group home setting.if  it comes down to him going some where else to live

Momof5Boys610
by Ann on Oct. 8, 2012 at 11:43 PM
1 mom liked this
I'm so sorry. This has been such a long road for you all. I feel you have done what He has asked of you, and then some. You are a good person, and you will be rewarded one day. Hang in there hun.
Basherte
by Silver Member on Oct. 9, 2012 at 7:33 AM
3 moms liked this

This is one of the reasons I don't believe in organized religion.

Nothing should come before the care of a child. Period. If missing church is what is needed due to the schedule that you set for him to begin with then that is how it has to be. The church thing should have been part of the schedule already. Period.

Yes I realize that this is not going to be a very popular response. But I will not sugar coat my feelings. Feel free to ignore them though. You should be thinking of what is in the best interest of this child. Not what is best for you. If you feel that he shouldn't go back to his parents- that's one thing. But to flat out state what you do for him doesn't make me feel that you've been doing those things out of the goodness of your heart. It hasn't been for money either, it feels and sounds like you do it for the recognition. It just feels like you want everyone out there to recognize what you have done for this boy. Everything that you have sacrificed for this boy. And to me raising my son with autism doens't feel like a sacrifice to me. I don't spout off everything that I do for him or everything that I give up for him. I just do it. 

My world revolves around my son., just like  most mothers out there. Nothing I do or do without feels like a chore or a sacrifice. It doesn't feel like I'm doing something that I wish I wasn't. Or that having a weekend without him would be pure joy or pure bliss. I can see how it would be though, for some parents, so I'm not trying to disrespect you there. 

I just feel that you put this here so that all of us would pat you on the back for a job well done, and hug you for the long road that you have been made to travel. When you agreed to take care of this child to begin with. The person I feel for in this scenario... is the child. No one else.

Macphee
by Bronze Member on Oct. 9, 2012 at 9:05 AM
I agree wholeheartedly. Someone who cares for a child for his own sake does not need to be recognized for it. He's not your child, but according to you he is better in your care. Maybe to him you're his mom. You don't have to use the church excuse. Just be honest, its a lot to deal.with and you don't want to. Imagine how rj will feel being with his parents.



Poor kid.


Quoting Basherte:

This is one of the reasons I don't believe in organized religion.

Nothing should come before the care of a child. Period. If missing church is what is needed due to the schedule that you set for him to begin with then that is how it has to be. The church thing should have been part of the schedule already. Period.

Yes I realize that this is not going to be a very popular response. But I will not sugar coat my feelings. Feel free to ignore them though. You should be thinking of what is in the best interest of this child. Not what is best for you. If you feel that he shouldn't go back to his parents- that's one thing. But to flat out state what you do for him doesn't make me feel that you've been doing those things out of the goodness of your heart. It hasn't been for money either, it feels and sounds like you do it for the recognition. It just feels like you want everyone out there to recognize what you have done for this boy. Everything that you have sacrificed for this boy. And to me raising my son with autism doens't feel like a sacrifice to me. I don't spout off everything that I do for him or everything that I give up for him. I just do it. 

My world revolves around my son., just like  most mothers out there. Nothing I do or do without feels like a chore or a sacrifice. It doesn't feel like I'm doing something that I wish I wasn't. Or that having a weekend without him would be pure joy or pure bliss. I can see how it would be though, for some parents, so I'm not trying to disrespect you there. 

I just feel that you put this here so that all of us would pat you on the back for a job well done, and hug you for the long road that you have been made to travel. When you agreed to take care of this child to begin with. The person I feel for in this scenario... is the child. No one else.


Posted on CafeMom Mobile
Basherte
by Silver Member on Oct. 9, 2012 at 9:28 AM

Thank you. 

Every parent knows that there are times when it is a bit harder. Even NT children have their bad days, when mom may sometimes feel like pulling out her hair. I'm having one of those mornings right now. I refuse to give up. If he isn't understanding what I'm telling him, then I have to change the way I am speaking to him about it. Because it is on me to make sure he understands. So, I've had a fail moment this morning. I'll get there. I'm not the perfect mom. I'm still in training. It's been three years with my youngest. I'll get there. I just hope he can be patient with me. He gets punished. I'm working on different things there as well.


It's just been my experience that when people tell anyone else what they have done, and what they go through and then state other things, they want attention. They want praise and in my experience with it, they want to control the ones that they have done things for. My aunt in law, did something for us and wouldn't stop talking about it up until the point of us paying her back the money that she loaned us. Until then she wanted to know every little thing that we bought. Even though we were paying her so much a week. After that it doesn't matter what we spend our money on. But she didn't see it that way. She wanted to know everything because she loaned us money...and wouldn't let us forget about it even years after we had completely paid her back off. Which didn't take us long because I went without a lot just to get her paid back. anyway... that's my two cents,and I'm climbing down off of my soap box


Quoting Macphee:

I agree wholeheartedly. Someone who cares for a child for his own sake does not need to be recognized for it. He's not your child, but according to you he is better in your care. Maybe to him you're his mom. You don't have to use the church excuse. Just be honest, its a lot to deal.with and you don't want to. Imagine how rj will feel being with his parents.



Poor kid.


Quoting Basherte:

This is one of the reasons I don't believe in organized religion.

Nothing should come before the care of a child. Period. If missing church is what is needed due to the schedule that you set for him to begin with then that is how it has to be. The church thing should have been part of the schedule already. Period.

Yes I realize that this is not going to be a very popular response. But I will not sugar coat my feelings. Feel free to ignore them though. You should be thinking of what is in the best interest of this child. Not what is best for you. If you feel that he shouldn't go back to his parents- that's one thing. But to flat out state what you do for him doesn't make me feel that you've been doing those things out of the goodness of your heart. It hasn't been for money either, it feels and sounds like you do it for the recognition. It just feels like you want everyone out there to recognize what you have done for this boy. Everything that you have sacrificed for this boy. And to me raising my son with autism doens't feel like a sacrifice to me. I don't spout off everything that I do for him or everything that I give up for him. I just do it. 

My world revolves around my son., just like  most mothers out there. Nothing I do or do without feels like a chore or a sacrifice. It doesn't feel like I'm doing something that I wish I wasn't. Or that having a weekend without him would be pure joy or pure bliss. I can see how it would be though, for some parents, so I'm not trying to disrespect you there. 

I just feel that you put this here so that all of us would pat you on the back for a job well done, and hug you for the long road that you have been made to travel. When you agreed to take care of this child to begin with. The person I feel for in this scenario... is the child. No one else.



kathrynmlise
by on Oct. 9, 2012 at 11:58 AM
4 moms liked this

I understand. Someone who isn't a foster parent would not understand where you are coming from. There is a cafemom group for foster/adoptive parents if you need to feel a little less bashed for putting your heart out there. Three of my adopted kids (they were foster first) have Autism but I post on there and they get it. The difference is you choose to care for RJ. You aren't looking to be patted on the back but a parent who gives birth to a child with Autism has a different perspective than a parent who chooses to parent a child with Autism. Sometimes I feel like I'm not allowed to complain because I chose this life. But it is what it is. Life can be hard no matter what situation you're in. Having a child with special needs who doesn't have the stability from everyday life because their lives are disrupted by visits and SW's is difficult. They tend to have more disruptive behaviors. Do you have someone of authority you feel is on RJ's side? A court appointed advocate or a therapist who works with Autism? When I feel like the 'state' is interfering with me giving the child the best care possible I tell them to let me do my job and they need to do theirs. If they don't like the way I do it, they can move them. They have never moved a child. They let me do things that I feel are in the child's best interest. As far as church goes, that's a hard one. My special needs kids go to bed early and have a pretty drawn out night time routine. We did eventually quit going to things that were in the evening. I quit choir because practice was in the evening and singing on Sunday required you do both services and that was just too long for the kids to be in class. We do have a class for kids with special needs so that part isn't difficult. I always want to do things as a family but the reality in my house is that it just doesn't always happen. I've gotten to the point where I can accept that. We are all entitled to feel sorry for ourselves once in a while. You'll snap out of it in time to take care of your kids.

Katy 

Jenn8604
by Jennifer on Oct. 9, 2012 at 1:04 PM
5 moms liked this
Ignore the haters CUZ THERE IS OBVIOUSLY QUITE A FEW IN HERE!!! Im sorry your struggling with this. You do know whats best for RJ because you are there with him. HUGS!! You will get thru this. Praying for the best for RJ in all this.
Posted on CafeMom Mobile
Jenn8604
by Jennifer on Oct. 9, 2012 at 1:06 PM
1 mom liked this
After all the haters Im glad there is someone who understands.

Quoting kathrynmlise:

I understand. Someone who isn't a foster parent would not understand where you are coming from. There is a cafemom group for foster/adoptive parents if you need to feel a little less bashed for putting your heart out there. Three of my adopted kids (they were foster first) have Autism but I post on there and they get it. The difference is you choose to care for RJ. You aren't looking to be patted on the back but a parent who gives birth to a child with Autism has a different perspective than a parent who chooses to parent a child with Autism. Sometimes I feel like I'm not allowed to complain because I chose this life. But it is what it is. Life can be hard no matter what situation you're in. Having a child with special needs who doesn't have the stability from everyday life because their lives are disrupted by visits and SW's is difficult. They tend to have more disruptive behaviors. Do you have someone of authority you feel is on RJ's side? A court appointed advocate or a therapist who works with Autism? When I feel like the 'state' is interfering with me giving the child the best care possible I tell them to let me do my job and they need to do theirs. If they don't like the way I do it, they can move them. They have never moved a child. They let me do things that I feel are in the child's best interest. As far as church goes, that's a hard one. My special needs kids go to bed early and have a pretty drawn out night time routine. We did eventually quit going to things that were in the evening. I quit choir because practice was in the evening and singing on Sunday required you do both services and that was just too long for the kids to be in class. We do have a class for kids with special needs so that part isn't difficult. I always want to do things as a family but the reality in my house is that it just doesn't always happen. I've gotten to the point where I can accept that. We are all entitled to feel sorry for ourselves once in a while. You'll snap out of it in time to take care of your kids.


Katy 

Posted on CafeMom Mobile
kickinit
by on Oct. 9, 2012 at 10:05 PM
3 moms liked this

I guess, I believe, I have religious rights too.  I will do whats best for RJ...but not at the cost of others telling me when and where I can worship.  Thats in the constitution, in case your forgot, freedom of religion.  RJ loves loves sunday school and singing in church...so I doubt its traumatizing him. 

I also think its really hard to understand...if your not in the situation.  I cannot hardly expect everyone to AGREE with me and you know what, i'm okay with that.  But believe me...I do care for RJ and its extemely important for me to try to do everything right!  Sometimes that's more of the problem with myself than anything.  No one said we have to be perfect...perfect parents do not exist! 

Its pretty darn easy to feel sorry for yourself at times...and no I really do not believe there's anyone but me advocating for RJ.  The school does a really good job advocating for his educational importance..but somehow we've gotten swept under the rug.  Probably being more patient and understanding would be a good goal to work for...and that's what I'm gonna do! 

I have never had such negative comments on this site before.  That's too bad...cuz I really like it here ....just be careful ladies.  I've got big shoulders and can take it...others maybe not so much, huh?  god bless

Momof5Boys610
by Ann on Oct. 9, 2012 at 10:52 PM
3 moms liked this
All I can say is.....ouch. I'm shocked at some of these responses.....not very supportive in my opinion. Some of these people don't know the whole story so screw them. I'm not one of the "haters" as Jenn says.

Hugs hun. KEEP THE FAITH!!

Add your quick reply below:
You must be a member to reply to this post.
Join the Meeting Place for Moms!
Talk to other moms, share advice, and have fun!

(minimum 6 characters)