Saturday, January 24, 2009
So far
Pretty uneventful day today......Bruce will be taking Zach to a movie .. Liza and I are hanging out.
Friday, January 23, 2009
Today
The week always flies by with the kids stuff.Often I forget to take care of me.Today I am torn I need to make an appointment for myself but not sure where to put it so it falls in with the kid's stuff.
A friend blogged about the trapped feeling .. That is how I feel lately every avenue I go down has road block .If there isn't a waiting game it is a we can't help you or there is the implication that we haven't done enough or somehow have caused this . Last night I was asked if maybe I spend too much time on one and not the other kid.Yikes I burst into tears and asked this person what else can I do - I don't work much out of the home.I rarely leave them... I get out for maybe one evening a week and then I usually go after they are in bed or close to it.
I was questioned on if I caused Zach's anxiety and his need to sneak food by not feeding him - AFTER all Liza had failure to thrive and now has a feeding tube.Maybe I need counseling on healthy meals and the importance of that .Zach has little concept on amounts he told her that he has a can a pop a day. I tried to explain that he might get 1/4 a can twice a week. He then told her of the 8 glasses of water he drinks a day .. He maybe drinks 1.I was told that I needed to keep all candy and junk away...While yes we have snacks I do limit them.. and I know somethings don't work with ADHD..
Zach's voices -- I know he has some hallucinations and hears voices..Some want to down play it as if I am the one making it up.I never said I knew what the voices were about .. if it is his imagination or conscious.... or maybe he is schizophrenic. It isn't my job to figure that out I am doing my job watching him-telling the Dr's and trying to get him the help.. I don't think I need to also diagnose him also.
Then lets go to Liza ... I want to scream I don't know why she won't eat.I don't know why she isn't speaking ...She is getting to be hyperactive and high energy and hard to handle at times..So instead of going with well it could be her genetics kicking in I get blamed on being a bad mom and I don't structure and discipline enough.While yes I think she is smart enough to learn appropriate behaviors I can't change the facts she has some cards stacked up against her.
I am sitting here waiting for the school to see what they can do for both kids..I don't always hear back from my emails - and am playing a huge waiting game.
Respite for Zach .. I feel as though he is easy enough to be around we just want to make sure he is safe with whoever we get.So playing a waiting game on that.
I put all my energy in them I forget to take care of myself.Or I run out of time or just simply put myself on the back burner.Where I am slowly burning up.
A friend blogged about the trapped feeling .. That is how I feel lately every avenue I go down has road block .If there isn't a waiting game it is a we can't help you or there is the implication that we haven't done enough or somehow have caused this . Last night I was asked if maybe I spend too much time on one and not the other kid.Yikes I burst into tears and asked this person what else can I do - I don't work much out of the home.I rarely leave them... I get out for maybe one evening a week and then I usually go after they are in bed or close to it.
I was questioned on if I caused Zach's anxiety and his need to sneak food by not feeding him - AFTER all Liza had failure to thrive and now has a feeding tube.Maybe I need counseling on healthy meals and the importance of that .Zach has little concept on amounts he told her that he has a can a pop a day. I tried to explain that he might get 1/4 a can twice a week. He then told her of the 8 glasses of water he drinks a day .. He maybe drinks 1.I was told that I needed to keep all candy and junk away...While yes we have snacks I do limit them.. and I know somethings don't work with ADHD..
Zach's voices -- I know he has some hallucinations and hears voices..Some want to down play it as if I am the one making it up.I never said I knew what the voices were about .. if it is his imagination or conscious.... or maybe he is schizophrenic. It isn't my job to figure that out I am doing my job watching him-telling the Dr's and trying to get him the help.. I don't think I need to also diagnose him also.
Then lets go to Liza ... I want to scream I don't know why she won't eat.I don't know why she isn't speaking ...She is getting to be hyperactive and high energy and hard to handle at times..So instead of going with well it could be her genetics kicking in I get blamed on being a bad mom and I don't structure and discipline enough.While yes I think she is smart enough to learn appropriate behaviors I can't change the facts she has some cards stacked up against her.
I am sitting here waiting for the school to see what they can do for both kids..I don't always hear back from my emails - and am playing a huge waiting game.
Respite for Zach .. I feel as though he is easy enough to be around we just want to make sure he is safe with whoever we get.So playing a waiting game on that.
I put all my energy in them I forget to take care of myself.Or I run out of time or just simply put myself on the back burner.Where I am slowly burning up.
Monday, January 12, 2009
One year later
Well we have hit the one year mark of Liza going into the hospital .. she is doing really well now.. Still not talking much and not eating by mouth much ...On saturday we took the kids sledding .. she loved it she laid in the snow and laughed . I think she might have over done it she seems alittle congested now while she is much stronger she still is fragile,.
We seem to be getting to the bottom of Zach's stuff ... Aspergers Syndrome seems to be what we are dealing with.I had wondered some time back if he Autism or something like Autistic Spectrum.It makes sense now - poor kid goes through alot .. he hallucinates and he will tell us things we know that never happened but he will swear it did.He has voices in his head that try to get him in trouble.. Hopefully we will be able to get him enough support and intervention to help him deal ..
The one thing that wears on with all of this is peoples response.There is the ones who we need to help with coping skills who question us make us feel like we haven't done something right or they know better on how to handle things.Then there is the ones who down play what we have going on and laugh things off.
The truth be said while this is the life we want and would never change it . There are days our life is heavy -with the running to apointments or dealing with meltdowns or just trying to have normalcy. It is a path chosen for us - I don't always know or understand all things in it.There are days I feel like I live in a land where many don't speak my language.Every move we make has be thought through to make sure how it will effect the rest of our world.
We seem to be getting to the bottom of Zach's stuff ... Aspergers Syndrome seems to be what we are dealing with.I had wondered some time back if he Autism or something like Autistic Spectrum.It makes sense now - poor kid goes through alot .. he hallucinates and he will tell us things we know that never happened but he will swear it did.He has voices in his head that try to get him in trouble.. Hopefully we will be able to get him enough support and intervention to help him deal ..
The one thing that wears on with all of this is peoples response.There is the ones who we need to help with coping skills who question us make us feel like we haven't done something right or they know better on how to handle things.Then there is the ones who down play what we have going on and laugh things off.
The truth be said while this is the life we want and would never change it . There are days our life is heavy -with the running to apointments or dealing with meltdowns or just trying to have normalcy. It is a path chosen for us - I don't always know or understand all things in it.There are days I feel like I live in a land where many don't speak my language.Every move we make has be thought through to make sure how it will effect the rest of our world.
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