update on frankie

yeah..they are all a truckload of pricks.
its ok, i think im going to plant flowers around his new sign this weekend..make it look even better! my neighbors can piss off, i put up with their stupid motorcycle revving up all evening long, their dogs that never shut up, they can handle a sign thats not even in their yard..its in mine!
 
but you know..i honestly expected these people to come and say hey, im really sorry about your kid..not be assholes about it.
 
frankiesmom said:
but you know..i honestly expected these people to come and say hey, im really sorry about your kid..not be assholes about it.
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It is amazing how people can be so wrapped up in their own little world and not think about other people! I would not waste time on these assholes, they're not worth your time!! It is a drag they're not asking you if you could use some help, instead of acting like immature jerks!
 
:aw:frankiesmom, am sorry about your experiences with that forum guy who wanted to cancel the sign and all....sadly many times adults really don't know better and/or don't care and are very judgmental and cruel toward people with disabilities or who they perceive as "different". That has been my experience and the idea of hostility/fear cuts across all lines of "difference".
 
jillio said:
Any chance that charges could be filed against the jerk? Or at least a front page story about the jerk in your local paper?
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I was wondering the same thing. The guy did impersonate her husband.
 
jillio said:
Any chance that charges could be filed against the jerk? Or at least a front page story about the jerk in your local paper?
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I would this be a discrimination case as the jerk violent Frankie's rights! I really think something should be done to give this jerk a warning, he seen to think he can do as damn please! He needs to be put in his place, like back under the rock he came out of!!
 
if we even know who exactly it was..i dont care though..frank has his sign and if my idiot neighbors and this other jerkoff dont like it..too bad! its not his fault!
 
frankiesmom said:
if we even know who exactly it was..i dont care though..frank has his sign and if my idiot neighbors and this other jerkoff dont like it..too bad! its not his fault!
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Of course is not Frankie fault , I never said that. I think it horrible that your neighbors are acting like jerks , they should be a shame of themselves. They're being horrible role models for their kids if they have any! You're wise to not care , they're not worth your time. I have nothing but great respect for you.
 
:giggle:
frankiesmom said:
i fired early intervention weeks ago..i could never get ahold of them! that and they were inept at even making basic appointments, or even showing up.
he also had a home health nurse that was coming out weekly to see how much he weighed, but i had her stop coming because she was pressuring the hell out me about the cochlear implant..telling me that it would make him hear 100 percent and i just HAD to do it, blah blah blah..that is one thing i am tired of, the insinuation that i am a bad parent because im not going that route. that is the first question anyone asks me when they find out about his hearing loss.
"oh, so are you getting the implant then?"
:roll:

i will say though, that sometimes it doesnt seem like he has progressed at all, but you can tell that he has somewhat, with his hearing aids. and i am glad for that.
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And so you *should* fire them! Your instincts are amazing. Do not let 'so called' professionals tell you how to treat your own child. Let your gut guide you. It has done so amazing thus far...

And the next time someone say to you, "Give him implant," tell them to bite you on the ass because that is about as helpful as that kind of comment about your child is. We do *NOT* need to be fixed for crying out loud!
 
frankiesmom said:
i just might! even his audiologist says that right now, his hearing loss is secondary in terms of importance..she said that his other delays are in no way related to the hearing loss and to just focus on keeping him happy. and that has definitely become my full time job..he wakes up all night long, to either cry for his bottle or just because he wants his blanket put back on, or just because..and during the day, i field calls from all of his therapists and drs, and i try to play and interact with him as much as possible, and try to feed him baby food, which is not very easy..its a lot of work! i am so glad that my other kids are older..i wouldnt know what to do if i had younger kids and frankie to take care of.
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You are to be applauded as Super Mum! I do not know how you do it all. Please make time for yourself. I know it probably seem obsessive to help him but it *can* wait an evening for you to be Mum and not Frankiemom. :hug:

You have identity as person not just Mum. Kids need to 'see' Mum and not Frankiemom. Husband need to see wife.
 
frankiesmom said:
they did the micro array and a fragile x test, and then want us to come back in 6 months..i talked to another lady and it makes more sense now..apparently, the first test is to look for the more common genetic issues, and the second sort of delves into less common things.
i honestly dont know what is wrong with him..and i feel kind of..like a jerk now for saying he looks like he has a genetic defect!! one thing that has been interesting has been his ability to sit up straight..he can walk, and shove his stroller around, but if he is sitting..he flops forward,backwards,sideways, its as if he cannot sit up on his own, and that has worsened. it really is strange! yesterday, i let him stand with me while i talked to a neighbor and he fell forward and hit his face, but he didnt try to keep himself from falling, he just let go. and that is what he always does. makes no sense to me.
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Seem like maybe brain do not talk to mind to tell him to stop himself from falling over. As for me, well, I have situation like that *all* the time! Lose balance without notice. Cannot do certain things but I also recognize that Frankie different from me.

I think you amazing Mum because you care!
 
frankiesmom said:
also, his audiogram has him right on the borderline of profound/severe. even yet, he is definitely getting something from his hearing aids and that is what is important..i dont think even the implant would "fix" him, and i just cant put him through a painful surgery on the chance that it could, even a little bit.
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*MY* opinion? He do not need to be fixed. If you forget that, and focus on who he is, life will be better for everyone.:hug:
 
whatdidyousay! said:
That is very good he know what "no" means and that he like music. Maybe you could try singing to him about what you're doing when you're doing things around the house. And trying signing the words to a song you made up about eating etc,.
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Or sign the words to the songs he likes. Then he will relate favourite song and words. :)
 
frankiesmom said:
yeah..they are all a truckload of pricks.
its ok, i think im going to plant flowers around his new sign this weekend..make it look even better! my neighbors can piss off, i put up with their stupid motorcycle revving up all evening long, their dogs that never shut up, they can handle a sign thats not even in their yard..its in mine!
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Can you adopt me? :giggle:
 
rebeccalj said:
*MY* opinion? He do not need to be fixed. If you forget that, and focus on who he is, life will be better for everyone.:hug:
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if he would eat and not keep falling over, i think i could just go with it..but this feeding tube sucks, and the fact that he is eating barely anything really sucks. hes happy with it but the goal is to get him to eat..and now hes dr is saying that he might be off of it as an adult, and that would be really good for him..ugh..i just wish we had some damn answers! yes, i said that i wasnt going to chase a diagnosis, and im not but still..there has to be another kid like frank! i did read that being mentally delayed and deaf is pretty rare though.
:hmm:
 
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