I'm having a fun week.
Not.
It all started 2 weeks ago, when I had to spend $4000 on having my dog's ACL (ligament) repaired on the same day I had to spend $4000 to get Alex's cavities filled. (He had to be under sedation for almost 3 hours.) Then last week I got to spend $4000 on a lawyer, to help me get guardianship over Alex, who turned 18 last weekend. Alex is officially an adult now - and I am slowly being forced to face all that implies. (I tried to fill in the guardianship papers myself but because NY State has a policy of making sure they make things are hard as possible on people whose lives are already as hard as possible, the courts twice rejected my documents, sending them back to me with little yellow sticky notes all over them asking for more information. (Form: "Why does your adult child with a disability require a guardian?" My answer: "Because he is essentially non-verbal, profoundly autistic and requires 24 hour supervision and help with even the most basic life skills." Sticky note: "please provide more information") How do I put this in a ladylike way...er...WTF? I finally admitted defeat and dumped the whole packet in my lawyer's very expensive lap.)
I didn't get to spend $4000 today. I'm going through withdrawal.
So I was already in a mood when I got to the lawyer's office last Thursday. I was in an even better mood when I left, $4000 poorer, after finding out that the sum total of Alex's social security (money meant to house, feed and care for him) will amount to about $400 per month. Yes, I know many adults who live comfortably on $4800 a year....
Way to help me keep my adult disabled child living at home, Government. $400 a month should cover 2 weeks worth of his groceries....maybe...if he skips dinner...
All these fun things had me in a great place, emotionally, when I walked into our neurologist's office with Alex on Monday afternoon. I had made up a summery sheet for him - bullet points from Alex's history demonstrating that his issues all come back to one thing: his immune system is beyond screwed up. Last Friday, the day after that bonus trip to the lawyer, I had to put Alex back on Prednisone for the millionth time. He was back to having hours-long cluster headaches. Friday night found me holding him on the couch, waiting for the Imitrex to kick in, while he punched my arms. I had to call in Liam for reinforcements. The next morning, 12 hours after 40 mg of Prednisone, Alex was full of sunshine. Liam calls it his "happy pill." I suppose they're mine too (seeing Alex smile is definitely sunshine in my heart)...except I can't keep him on it, of course. (...)
Not.
It all started 2 weeks ago, when I had to spend $4000 on having my dog's ACL (ligament) repaired on the same day I had to spend $4000 to get Alex's cavities filled. (He had to be under sedation for almost 3 hours.) Then last week I got to spend $4000 on a lawyer, to help me get guardianship over Alex, who turned 18 last weekend. Alex is officially an adult now - and I am slowly being forced to face all that implies. (I tried to fill in the guardianship papers myself but because NY State has a policy of making sure they make things are hard as possible on people whose lives are already as hard as possible, the courts twice rejected my documents, sending them back to me with little yellow sticky notes all over them asking for more information. (Form: "Why does your adult child with a disability require a guardian?" My answer: "Because he is essentially non-verbal, profoundly autistic and requires 24 hour supervision and help with even the most basic life skills." Sticky note: "please provide more information") How do I put this in a ladylike way...er...WTF? I finally admitted defeat and dumped the whole packet in my lawyer's very expensive lap.)
I didn't get to spend $4000 today. I'm going through withdrawal.
So I was already in a mood when I got to the lawyer's office last Thursday. I was in an even better mood when I left, $4000 poorer, after finding out that the sum total of Alex's social security (money meant to house, feed and care for him) will amount to about $400 per month. Yes, I know many adults who live comfortably on $4800 a year....
Way to help me keep my adult disabled child living at home, Government. $400 a month should cover 2 weeks worth of his groceries....maybe...if he skips dinner...
All these fun things had me in a great place, emotionally, when I walked into our neurologist's office with Alex on Monday afternoon. I had made up a summery sheet for him - bullet points from Alex's history demonstrating that his issues all come back to one thing: his immune system is beyond screwed up. Last Friday, the day after that bonus trip to the lawyer, I had to put Alex back on Prednisone for the millionth time. He was back to having hours-long cluster headaches. Friday night found me holding him on the couch, waiting for the Imitrex to kick in, while he punched my arms. I had to call in Liam for reinforcements. The next morning, 12 hours after 40 mg of Prednisone, Alex was full of sunshine. Liam calls it his "happy pill." I suppose they're mine too (seeing Alex smile is definitely sunshine in my heart)...except I can't keep him on it, of course. (...)
RSS Feed