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

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

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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
Replies (31-40):
kickinit
by on Oct. 11, 2012 at 10:27 PM

I'm sorry i do not have that option..we live 26 mi in the country on a cattle ranch.  Our closest neighbor is a old couple over 80 yrs old..and they go to our same church..anyways.  I also think its important to keep RJ with us as a family.  He loves church..that's not the problem...and we do not go late every sunday night..just occasionally when there's special things going on. 

It is super hard to always watching your back...my bro and partner have spied on us on many occasions and made up crap...they are completely cluless as to what his needs are.  We are not his foster parents and the only way we can help him and make a home for his is for all of his support staff to help us and listend to us also.  they seem to thing its EXTREMELY important to ask his parents before us...and meet there expectations before even considering RJ's or ours. 

Until RJ came to live with us..he had no schedule...the little kiddo did not even sleep.  If we need to modify his schedule for our benefit occasionally, I think there should be a little understanding.  I understand when there schedule changes and we adjust for them.  It works both ways. 

All I can say is...I am trying and working at being understanding...but my family has sacrificed and my children have given up everything for RJ.  It would be nice for all support staff around us to back off, understand our needs and put RJ first...that's all I want, really!

Quoting AnnaNonamus:

Fostering isn't easy work. Fostering a special needs child is even harder- especially if you have family members who are fighting what you are doing.

I'm not going to say religion should take the back burner, but I will say that perhaps getting your routine down first would help before trying to bring him into the Church. Right now, it sounds like he is out of 'wack'. Getting conflicting recommendations from his parents, and from what you know works, won't help matters.

As a foster parent, you have very little say in what happens with him medically, which is unfortunate when you are dealing with parents who want nothing to do with a plan of action in how to deal with him.

Would in-house baby sitting be a possibility during Church? I don't think you should drop your religion, as it's obviously important to you, but it's also interferring with his schedule, which can cause further issues.

If you can get someone to watch him during Church, then he could maintain his normal schedule, while you feed yourr religious needs.


kickinit
by on Oct. 11, 2012 at 10:37 PM

I would not spank for accidental pants wetting...but lady this little twirp will get mad and tell you he's gonna pee himself and he will.  He's also defocated on me purposefully!!  He darn well knew that was wrong when he laughed.  theres a lot more going on than innocent/ accidental pants wetting.  I would never spank a child for that..on top of that RJ is in our care under a kinship program that prohibits this so its out of the questiona and against the rules.  I would never jeopardize our ability to provide RJ with a stable safe enviornment, something he's never had in all his 9 years.  

I have advocated for these services for RJ but his casemanager is trying to meet his needs, but we do not have a ll the fancy therapies and such out here in the boonies.  I am asking for help for us and him, but it seems they are only interested in helping the family unit in in-home family therapy...even tho his parents have serious mental dx that they are not being medicated for.  Its a tough road ....I can say i'm wearing thin and feel like were slipping back faster than moving forward.   

Quoting Rachelle11503:

I do agree with the other's comments about religion. I think that God would understand that if it was for the good of the child that you couldn't go to every church service. But that is just my opinion and i'm not relgious so I can't say much about that. The only other thing that set me off was the spanking issue..not because I'm against spanking..its just that some of the behaviors you listed that you would spank for he may not have a lot of control over...pants wetting-my daughter has very poor muscle tone in her abdomen as part of her Autism, which makes it hard for her to tell when its time to pee or poop. So sometimes she has accidents. We usued to get on her about it, but its something she has to work on with OT, she can't help it and I feel bad for being mean with her about it. I've read that name calling and swearing is often seen with Autism...and you may have to look into reasons that he is doing these things. I will NEVER spank my child with Autism again, I've come to find she's sensitive to touch..so neurologically speaking...it does hurt her more (physical touch)
Okay that being said, I do somewhat understand where you are coming from. My grandmother (who raised me) was a foster parent and it is thankless! She also raised my Aunt who had severe ADHD and caused a lot of trouble. She did the best she could with what information she had and tried to be a good mom to her, but it was completely thankless. Now that child she raised is completely ungrateful. But in the end she knows she gave her a chance (her mother was  adrug addict) I dont know your back story, but i'm sure that you have been through a lot, and I can't say that I would be doing any better in that situation!

You said:

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

I think to deal with Autism you have to look into behaviors..the "WHY"..and then look into fixing things. Its a lot of work! What do you mean about putting up with the "visits/therapy"...that's an important part for him. Maybe if you want to keep caring for him you can find a local support group for autism for you and him?
I may not agree with everything you have to say, but I do acknowelege that you are trying to be there for this child. You could easily turn your back on him. You just have to make sure that its helpful and not hurtful. If you feel that you are not the best place for him there is NO shame in looking into other arrangements. You do need to look out for your family's needs.
***To be clear i'm not putting you down at all!! You ARE trying to do the right thing, I was just stating my opinion


Siobhan69
by on Oct. 11, 2012 at 10:58 PM
1 mom liked this

Quoting arkansasmama08:

There's a new group??!! That explains a lot. Is there a reason I didn't get that memo? :(


You crack me up and you said what I was thinking. I was off of this site for most of the summer and came back to no one I knew. I've been wondering where everyone went. It has gotten a little harsh here. Let me know if you get the memo, I need a copy :-)

 

Siobhan69
by on Oct. 11, 2012 at 11:07 PM
1 mom liked this

 Please know we are here for you anytime you need to vent, don't listen or even respond to the horrible comments from some of the other posters. I am sad that they are treating you this way when you need our support at this time. Know that you are doing everything that you can for RJ and it sounds like you love him very much otherwise you would not seek help or even care for him.

I know its tough going and you should be able to have time to yourself because if your feeling in bad place then you cannot help him or even be positive about anything. Just want to send a huge hug to you and lots of blessings. I don't have much advise for you but I just want to let you know not to listen to the horrible comments, no one has a right to put anyone down as we have not walked in anyone's shoes but our own.

Quoting kickinit:

I would not spank for accidental pants wetting...but lady this little twirp will get mad and tell you he's gonna pee himself and he will.  He's also defocated on me purposefully!!  He darn well knew that was wrong when he laughed.  theres a lot more going on than innocent/ accidental pants wetting.  I would never spank a child for that..on top of that RJ is in our care under a kinship program that prohibits this so its out of the questiona and against the rules.  I would never jeopardize our ability to provide RJ with a stable safe enviornment, something he's never had in all his 9 years.  

I have advocated for these services for RJ but his casemanager is trying to meet his needs, but we do not have a ll the fancy therapies and such out here in the boonies.  I am asking for help for us and him, but it seems they are only interested in helping the family unit in in-home family therapy...even tho his parents have serious mental dx that they are not being medicated for.  Its a tough road ....I can say i'm wearing thin and feel like were slipping back faster than moving forward.   

Quoting Rachelle11503:

I do agree with the other's comments about religion. I think that God would understand that if it was for the good of the child that you couldn't go to every church service. But that is just my opinion and i'm not relgious so I can't say much about that. The only other thing that set me off was the spanking issue..not because I'm against spanking..its just that some of the behaviors you listed that you would spank for he may not have a lot of control over...pants wetting-my daughter has very poor muscle tone in her abdomen as part of her Autism, which makes it hard for her to tell when its time to pee or poop. So sometimes she has accidents. We usued to get on her about it, but its something she has to work on with OT, she can't help it and I feel bad for being mean with her about it. I've read that name calling and swearing is often seen with Autism...and you may have to look into reasons that he is doing these things. I will NEVER spank my child with Autism again, I've come to find she's sensitive to touch..so neurologically speaking...it does hurt her more (physical touch)
Okay that being said, I do somewhat understand where you are coming from. My grandmother (who raised me) was a foster parent and it is thankless! She also raised my Aunt who had severe ADHD and caused a lot of trouble. She did the best she could with what information she had and tried to be a good mom to her, but it was completely thankless. Now that child she raised is completely ungrateful. But in the end she knows she gave her a chance (her mother was  adrug addict) I dont know your back story, but i'm sure that you have been through a lot, and I can't say that I would be doing any better in that situation!

You said:

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

I think to deal with Autism you have to look into behaviors..the "WHY"..and then look into fixing things. Its a lot of work! What do you mean about putting up with the "visits/therapy"...that's an important part for him. Maybe if you want to keep caring for him you can find a local support group for autism for you and him?
I may not agree with everything you have to say, but I do acknowelege that you are trying to be there for this child. You could easily turn your back on him. You just have to make sure that its helpful and not hurtful. If you feel that you are not the best place for him there is NO shame in looking into other arrangements. You do need to look out for your family's needs.
***To be clear i'm not putting you down at all!! You ARE trying to do the right thing, I was just stating my opinion

 

 

newmommy430
by Silver Member on Oct. 11, 2012 at 11:21 PM
1 mom liked this
That's too bad. I hope the process of you becoming foster parents speeds up. I know it's a lot to handle and children with autism tend to be very costly to take care of. My heart goes out to you.

Quoting kickinit:

we live in a different state than RJ did.  our two states do not work together..so we applied for a kinship study anyways so he would not enter foster care.  we do get a small amount of TANF (very small).  It helps cover gas getting RJ to and from the bus for school.  Its 40 mi per day.  we are about half way thru becomming foster parents and then will recieve more compensation...but that takes a long time.  his parents are able to pay child support, they choose not to.  they will owe the state for back child support, which they will probably never get..as they seem to switch jobs often or work for cash only.  RJ has an advocate but would have no idea where to find one for us...I have no money for a lawyer..at all!  thanx for your concern...god bless


Quoting newmommy430:

I don't understand why you aren't getting financial compensation for RJ. You are raising him and he is not your child. I understand that his parents have...issues and are likely not able to pay child support at this time, but shouldn't you be able to collect ssi or foodstamps for him in the very least? If they get their acts together, are they going to owe you for back child support?

I think you should get an advocate and a lawyer. See if maybe someone can do something to help because this just doesn't seem fair.


Posted on CafeMom Mobile
arkansasmama08
by Silver Member on Oct. 12, 2012 at 6:21 AM
I got the memo ;). I tried to pass it in to you but you're locked. Friend me and I'll send you a message :)


Quoting Siobhan69:


Quoting arkansasmama08:

There's a new group??!! That explains a lot. Is there a reason I didn't get that memo? :(



You crack me up and you said what I was thinking. I was off of this site for most of the summer and came back to no one I knew. I've been wondering where everyone went. It has gotten a little harsh here. Let me know if you get the memo, I need a copy :-)


 


Posted on CafeMom Mobile
Siobhan69
by on Oct. 12, 2012 at 10:14 AM

 Thanks, don't know why I am locked, not something I did on purpose must be my excellent computer skills...lol

Yes Leobaby2007 just sent me the memo. Thanks and happy Friday!

Quoting arkansasmama08:

I got the memo ;). I tried to pass it in to you but you're locked. Friend me and I'll send you a message :)


Quoting Siobhan69:


Quoting arkansasmama08:

There's a new group??!! That explains a lot. Is there a reason I didn't get that memo? :(



You crack me up and you said what I was thinking. I was off of this site for most of the summer and came back to no one I knew. I've been wondering where everyone went. It has gotten a little harsh here. Let me know if you get the memo, I need a copy :-)


 


 

jb022210
by on Oct. 12, 2012 at 10:35 AM

im not even reading the rest of these replies, this is rediculous, and one reason i dont post much anymore on here, ignore the negative women, they obviouslt dont understand, and for all those who keep posting negatvie things, you really dont get where this wonderful lady is comming from, she has been fighting for a long to to take care of rj and do what is best for him, he does not do well around his parents and is always a mess after he sees them, church or no church that isnt going to change, she is stressed about the whole situation as she cares so much for rj, and shes fighting a losing battle trying to do what is absolutely best for him which is to stay with her, of course shes going to doubt herself every now and then, hell just going through the diagnostic process with jude ive doubted myself 100 times, i cant imagine having to fight at every turn for a child not biologically your but yours in your heart, and you knowing what this child really needs, she is the only one who has stepped up and gotten rj the help he desprately needed. if you had read her previous posts, and the comments in them, and comments she has posted on others you would understand just how strong this woman truely is, and how much she truely cares for her nephew, and how she only wants the best for him, which in my opinion is to stay with her the rest of his adolecent life. if she had custody of him full custody without the worry of his worthless parents, or had to fight the courts at everyturn, she'd be damn good and he'd be doing so much better, but where he is thrown around by the courts forcing visits with people who are no good to him, of course there are gunna be struggles.

just keep fighting hun, if you need to talk im here. hopefully the others start to understand and apologize for saying some of the things they have.

terri-553
by Bronze Member on Oct. 12, 2012 at 10:47 AM

I feel really bad for you,guys,This isn;t by any means easy,Alot of it maybe his parents,their not knowing how to deal w/him,After all he is w/you.They seem to be clueless,it sounds like when they all visit,Maybe he loses focus of all you are teaching him.Hang in there.do what ever is best for you/family

Pam11
by on Oct. 12, 2012 at 1:08 PM

I know just how you feel about being in the boonies....  That our problem too...    I take John-Paul, 70 miles,1 way, or 120 miles round trip, to see his OT and Speech, once a week...  The school systems here was worse for him then no therapy at all...  You do what you feel in best for him and your family...  I would trust YOU (except for God, of-cause) above everyone else, to know what's best for RJ!!  Hang-in-there, momma!!  And I'll keep sending prayers your way...   Huge HUGS!!!

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