Granny's gone and done it again

[Wishing4Wings]

Wishing, you werent the only one that found that funny. He picked the easist possible thing to do. But, I didnt have to fight him to get it done and thats a step right there.
I have devoted 23 yrs. of my life working with a child that dont see things the way we do. Ya'll dont know how far I /we have come in that time From a little boy that wouldnt speak at all and was in his own world . He just sit in his room rocking or banging his head or screaming bloody murder because the birds were singing. And I didnt know why. Taking him to the drs and being surprised because he has sever double ear infections and he hadnt shown one sign of being in pain. Phone calls from school because the kids had beat the hell out of him because he was "different", pushed down the stairs. This is just a very small drop of what this kid has been through. Point is, I dont know how he feels, no one does. If its the noise of the lawnmower or the sound of water hitting his head, His socks digging into his feet . We dont know. Drs / phy. told me , he will never graduate high school, he will never "grow up" he has a greater chance of suicide, he has been diagnosed with : PDD ,asburgers,autism, Coordination developmental disorder, depression,Epilepsy, Crones. He tests below average on their tests. I have done all I know to do. I went to classes to learn how to help him best. Those were so far off. He has has botox in his legs to deaden the muscles so he could walk normal, That didnt last long. Pt and OT therapy. I feel like I have done a lot and I feel he has come a very long way. When I am gone he will not be able to live on his own. He will never have a wife or a chance at a "normal" life. I dont feel like you all understand the struggles he has. I want you to. Robert is a mimic, He cant be with others like him or more severe then he is because he will do as they do. I have been pushing him from day one. I just dont know that I have much more in me to push.

You have been doing a good job with him, and by yourself too. Just keep going, keep pushing, because you are going to be the only one that cares enough to do it. When you are gone, he will lose his best advocate and rear kicker. He's going to do the bills now... that's awesome! And he was smart enough to pick the easiest job, which shows his intelligence (and made me laugh!) and his intelligence is an asset! The more you push his talents and learn ways around his limitations, the better life he will have. I wish you had a support group there... other parents dealing with similar stuff to share ideas. Just like my kid, the expectation is not that my square peg will ever fit into the round hole of life, and I am not trying to force him into the hole, but I am trying to shave off the edges a little at a time so it's not so hard for him. Making Robert "normal" is not the goal, trying to teach him one more life skill, one more self help skill, one adaptive technique to overcome a barrier... that's the goal... just one more... for as long as you can.
That being said, I didn't know he has a PDD diagnosis. You know what that means, right? Means they don't really know what's going on.
I always try to shoot for the stars, because it might get his feet off the ground, at least for a bit. And at the very least, it gets him out of bed.
If there is ever any way I can help, I will try.

 

[Kiki]

Thats my wal mart. Said they locked all the doors in a few stores. No one in or out.

o my.....gosh!

 

[Wishing4Wings]

 

[Kiki]

We all here are YOUR support group Granny.
We are here for you and at times you may think we don't understand and at times we may not..but we are still here...trying to help/offer advice.

 

[Kiki]

maybe everyone could leave a nice message for a fellow BYC friend:

Hi all! The is her Honey posting to update you all. Thank you all for the love and support and for being such an group for her to belong to. She has asked that I tell you all what's going on, so please grab some tissues and sit down.

Rachel had received another round of induction chemotherapy for her leukemia. During her time of little to no immune system, she developed a systematic fungal infection and a bad pneumonia. The pneumonia has simce resolved. She has had one sinus surgery and two eye surgeries combatting the fungus. Rachel has lost her left eye in the process and can not see out of her right eye. The ophthalmologists have said that they will continue to follow her, but unless the infectious disease team can find something else, all they can do is wait to see what her immune system and the iv antifungals will do for her vision.

The fungus has been found in her brain during a mri. The doctors say they are watching for any progression through symptoms.

They believe that the leukemia is currently in remission due to current blood tests, but have not been able to confirm with a bone marrow biopsy. Even if it is, they would need to do a few rounds of consolidation chemotherapy to do it properly. The real problem is that they can not give her more chemotherapy until at least 90 days after the fungal infection is under control. It is still not under control.

Unfortunately, this is only the tip of the iceberg. As you may already know, graft versus host disease has already damaged her lungs. Her damaged lungs and chemotherapy have damaged her heart. I have been in the hospital with her for these many weeks and I can tell you she is a fighter! I believe that God is with us! The doctors say she is currently beating the odds. She is still here fighting! Thank you again for everything! With love, Don of donrae

 

[Granny Hatchet]

PDD, I know what it means , just cant spell it. Pervasive developmental disorder. ( Oh guess I can) And that was his first diagnoses. It went from that to asburgers to full blown autism.

 

[Granny Hatchet]

maybe everyone could leave a nice message for a fellow BYC friend:

Where is this at ? A thread or ???

 

[h2oratt]

Wishing, you werent the only one that found that funny. He picked the easist possible thing to do. But, I didnt have to fight him to get it done and thats a step right there.
I have devoted 23 yrs. of my life working with a child that dont see things the way we do. Ya'll dont know how far I /we have come in that time From a little boy that wouldnt speak at all and was in his own world . He just sit in his room rocking or banging his head or screaming bloody murder because the birds were singing. And I didnt know why. Taking him to the drs and being surprised because he has sever double ear infections and he hadnt shown one sign of being in pain. Phone calls from school because the kids had beat the hell out of him because he was "different", pushed down the stairs. This is just a very small drop of what this kid has been through. Point is, I dont know how he feels, no one does. If its the noise of the lawnmower or the sound of water hitting his head, His socks digging into his feet . We dont know. Drs / phy. told me , he will never graduate high school, he will never "grow up" he has a greater chance of suicide, he has been diagnosed with : PDD ,asburgers,autism, Coordination developmental disorder, depression,Epilepsy, Crones. He tests below average on their tests. I have done all I know to do. I went to classes to learn how to help him best. Those were so far off. He has has botox in his legs to deaden the muscles so he could walk normal, That didnt last long. Pt and OT therapy. I feel like I have done a lot and I feel he has come a very long way. When I am gone he will not be able to live on his own. He will never have a wife or a chance at a "normal" life. I dont feel like you all understand the struggles he has. I want you to. Robert is a mimic, He cant be with others like him or more severe then he is because he will do as they do. I have been pushing him from day one. I just dont know that I have much more in me to push.

Why is that funny, he is very smart. Picked the easiest thing to do.

 

[Granny Hatchet]

Why is that funny, he is very smart. Picked the easiest thing to do.

its funny because he IS smart . He thinks he pulled one over on me. He thought wrong.

 

[h2oratt]

Granny, I think you have been a great mom to him. We don't know how he feels things. It is a very hard job you have being his mother. But he is very lucky to have you.