Two days ago my son started Lithium. He has had two great days. Earlier in the week, he had tried to escape the unit by pulling on staff's badges, by hitting and biting - pulling another student off a chair and honestly I can't remember it all. It was then that I asked the doctor to not postpone retrying the Lithium to do it as soon as possible as we have wasted so much time in the last four years. It feels like we have lived a lifetime in the last two months.
He has had two great days. Two. I'll take them but I don't trust them.
I have nothing left to fear but hope itself. I am trying to stay positive but honestly trying to stay positive and hopeful takes so much damn energy. I had given up on prayer. I had given up on God. I'm not sure where I stand on anything right now. I'm numb.
Today, I took a trip to Home Goods just for twenty minutes to get out of the house - somewhere besides the hospital. I packed my cart full of things - things to make me happy - when I got to the register I realized that those things weren't going to do anything at all for me. The sweet girl behind the register, Jenna, was kind - I kept a bottle of olive oil, a small bowl and a Italian pot that was a size I had been looking for and was a steal - and told her I was putting everything else back - that I didn't need any of those things and I was trying to make myself feel better. She asked me what was wrong. I told her.
She said, "I was in the hospital myself for an entire year my sophomore year of high school. I had cancer. Stage 4 - the doctors said I had less than 20% chance of survival. I'm cancer free now. God is good." She is 20 years old, beautiful, kind and alive today.
She said she would pray for Andrew. I told her I wished her continued good health. I'm not sure about praying.
When we left tonight, Andrew begged to come home and wouldn't let me go he kept hugging and kissing me. He hasn't done that in a very long time.
The plan is four more days of inpatient treatment. Then partial hospitalization. We have our IEP meeting tomorrow - I've heard that the district is ready to admit he needs an ABA staffed private school. They better be - I'm not settling for less.
The house is quiet and peaceful, I feel anything but. Good reports and progress have always been the harbinger of really bad things as signs of hope ushers in evil -- I will keep my head low as well as my expectations and then when the fall comes it won't hurt as much.
Thursday, September 28, 2017
Saturday, September 23, 2017
Hits keep coming
As many of you know, Andrew was readmitted to the hospital on Wednesday evening. Overall, things have been rocky - better at home when we are alone - he and I - as it seems every person added to the equation makes for more stress - for everyone involved. Or it could be that I truly understand him more than others, even his father.
Dealing with depression, social anxiety, bipolar is something I totally get - my mother was bipolar - and I have a number of issues. I have to fight hard to be the totally with it woman you all see (are you laughing?) - in other words I'm a fucking fake - you know the tears of the clown stuff.
On Wednesday at school, he picked up a rock and threw it - why big rocks are right aside the SED classroom is beyond my comprehension - just as with our latest election - it makes absolutely no fucking sense. He threw and broke a computer. He said vile things to the staff. He postured to punch an aide and the teacher and came one inch away from poking the psychologist in the eye. Remember, when I told you all - that the program there was not right for him. Yeah, I told them so.
He has gone from a frustrated brilliant boy who use to curse a great deal and sometimes clear the table when he became angry - to a boy immersed in autistic behaviors, inappropriate gestures, extremely regressed to baby talk at times and wants to be with me every single moment. Him being in the hospital again is tearing us both apart.
We are drowning and there are no life preservers for this shit. I can't seem to make the hospital understand that this is NOT Andrew. Prior to the hospitalization - he had really bad moments, really angry moments - now he still has those but he is a shell of who he is - and I want him back. Is that too much to ask? I'll deal with the outbursts - if I can have a conversation with him again - if he doesn't have that far away look in his eyes - if he doesn't act like an 8 year old version of the ruler of North Korea.
He isn't on anything new medication wise. Most of his medications were removed and just a few remain. Right now, the staff is befuddled as to what the right medication may be.
I just want my boy back - for better or for worse. I go to the hospital and feel like I can't breathe that there is so much sadness and hurt in the air. I know friends are battling cancer, I know friends are recovering from hurricane damage and I am thinking about them always - but when someone says there dishwasher broke and they are distraught, I want to pick up a rock myself and fling it through cyberspace. Be grateful for your life - I am trying hard to be grateful for mine even though I am fast losing faith in my God - I don't think he is there - if he ever was.
This is were I am at - lost and looking for my child - like Shirley MacClaine in Terms of Endearment - he's in the hospital again, we're following all the fucking rules - just give me back my son - it's way past 10 o'clock.
Dealing with depression, social anxiety, bipolar is something I totally get - my mother was bipolar - and I have a number of issues. I have to fight hard to be the totally with it woman you all see (are you laughing?) - in other words I'm a fucking fake - you know the tears of the clown stuff.
On Wednesday at school, he picked up a rock and threw it - why big rocks are right aside the SED classroom is beyond my comprehension - just as with our latest election - it makes absolutely no fucking sense. He threw and broke a computer. He said vile things to the staff. He postured to punch an aide and the teacher and came one inch away from poking the psychologist in the eye. Remember, when I told you all - that the program there was not right for him. Yeah, I told them so.
He has gone from a frustrated brilliant boy who use to curse a great deal and sometimes clear the table when he became angry - to a boy immersed in autistic behaviors, inappropriate gestures, extremely regressed to baby talk at times and wants to be with me every single moment. Him being in the hospital again is tearing us both apart.
We are drowning and there are no life preservers for this shit. I can't seem to make the hospital understand that this is NOT Andrew. Prior to the hospitalization - he had really bad moments, really angry moments - now he still has those but he is a shell of who he is - and I want him back. Is that too much to ask? I'll deal with the outbursts - if I can have a conversation with him again - if he doesn't have that far away look in his eyes - if he doesn't act like an 8 year old version of the ruler of North Korea.
He isn't on anything new medication wise. Most of his medications were removed and just a few remain. Right now, the staff is befuddled as to what the right medication may be.
I just want my boy back - for better or for worse. I go to the hospital and feel like I can't breathe that there is so much sadness and hurt in the air. I know friends are battling cancer, I know friends are recovering from hurricane damage and I am thinking about them always - but when someone says there dishwasher broke and they are distraught, I want to pick up a rock myself and fling it through cyberspace. Be grateful for your life - I am trying hard to be grateful for mine even though I am fast losing faith in my God - I don't think he is there - if he ever was.
This is were I am at - lost and looking for my child - like Shirley MacClaine in Terms of Endearment - he's in the hospital again, we're following all the fucking rules - just give me back my son - it's way past 10 o'clock.
Tuesday, September 12, 2017
What No One Tells You
Words have been tossed at me for years - grabbed onto like life jackets, "once they get his medicines figured out things will be so much better. They were for my pick one: child, mother, sister, brother", "when he is older and more mature things will be better", "I had two children with ADHD" (translate: your bipolar son with autism can't beat my pair or three of a kind), "I'm here for you" or "let me know if I can do anything" (translate: I care enough to offer to do something but I really won't be able to do anything, ever).
What no one tells you, is that if you have a child with a neuro-psych diagnosis - you are in this alone. No overnights, no parties, even parents of other special need kids flee when your child's behaviors make their child look like Shirley Temple.
What no one tells you - that if you strip away the meds while trying other meds - your brilliant, angry child will become more autistic and the aggression will be lessened but the bizarre behavior will always be there and the hope you felt momentarily drifts away like everything and everyone else.
What no one tells you - is that things don't get better - they get a tad less worse but then always return to somewhere between despair and hell.
What no one tells you - is that you start living hour by hour and each hour is a mountain to climb - you no longer hope for good days - you settle for good hours and are fearing when you look forward to good minutes.
What no one tells you - is that you will always have to scrap and beg for every single thing that you want or need or think that can save your child.
What no one tells you - is that sometimes you will just want to crawl into a fetal position and not leave your bed but you have to because you are the bloody parent.
What no one tells you - is that while you are worried about friends and family, North Korea, scary politicians, paying bills and hurricanes - that your own fear and frustration suffocates you from the inside even when you are smiling and making jokes on the outside.
What no one tells you - is that you will delay your medical appointments, your root canal and dental appointments - that you will feel so bad and tired and sick but still somehow you always are able to put that oxygen mask on everyone else but yourself.
What no one tells you - is that tomorrow morning you will get up and do it all over again - that every day is the same battle, the same ups and downs, that hope is just another false promise that you make to yourself.
What no one tells you - is that you will defend your child to everyone. That a family friend who came to dinner after church on Saturday will say - "I hope you didn't pay anything out of pocket because he is worse than ever" and you will have to argue with a 77 year old woman that she can't make judgments like that based on an hour of behavior and that you have enough negativity in your life and you don't need hers to add to the heap. Which leads to....
What no one tells you - is that everyone is an expert and they know far more than a team of doctors and psychologists at a number one rated pediatric hospital.
What no one tells you - is that you will hate yourself for writing posts like this and seem like you are a selfish, whining, ungrateful parent and while you acknowledge this the need to unburden yourself far outweighs the need to give an iota about what anyone else thinks.
What no one tells you - is that while you are denouncing hope there is a hidden part of yourself that knows that it will be better and you pray that bitch knows what she is talking about.
What no one tells you, is that if you have a child with a neuro-psych diagnosis - you are in this alone. No overnights, no parties, even parents of other special need kids flee when your child's behaviors make their child look like Shirley Temple.
What no one tells you - that if you strip away the meds while trying other meds - your brilliant, angry child will become more autistic and the aggression will be lessened but the bizarre behavior will always be there and the hope you felt momentarily drifts away like everything and everyone else.
What no one tells you - is that things don't get better - they get a tad less worse but then always return to somewhere between despair and hell.
What no one tells you - is that you start living hour by hour and each hour is a mountain to climb - you no longer hope for good days - you settle for good hours and are fearing when you look forward to good minutes.
What no one tells you - is that you will always have to scrap and beg for every single thing that you want or need or think that can save your child.
What no one tells you - is that sometimes you will just want to crawl into a fetal position and not leave your bed but you have to because you are the bloody parent.
What no one tells you - is that while you are worried about friends and family, North Korea, scary politicians, paying bills and hurricanes - that your own fear and frustration suffocates you from the inside even when you are smiling and making jokes on the outside.
What no one tells you - is that you will delay your medical appointments, your root canal and dental appointments - that you will feel so bad and tired and sick but still somehow you always are able to put that oxygen mask on everyone else but yourself.
What no one tells you - is that tomorrow morning you will get up and do it all over again - that every day is the same battle, the same ups and downs, that hope is just another false promise that you make to yourself.
What no one tells you - is that you will defend your child to everyone. That a family friend who came to dinner after church on Saturday will say - "I hope you didn't pay anything out of pocket because he is worse than ever" and you will have to argue with a 77 year old woman that she can't make judgments like that based on an hour of behavior and that you have enough negativity in your life and you don't need hers to add to the heap. Which leads to....
What no one tells you - is that everyone is an expert and they know far more than a team of doctors and psychologists at a number one rated pediatric hospital.
What no one tells you - is that you will hate yourself for writing posts like this and seem like you are a selfish, whining, ungrateful parent and while you acknowledge this the need to unburden yourself far outweighs the need to give an iota about what anyone else thinks.
What no one tells you - is that while you are denouncing hope there is a hidden part of yourself that knows that it will be better and you pray that bitch knows what she is talking about.
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