Truth be told, I did not have the energy this year to plan a birthday party for Z. The entire situation with the possible residential placement and the continual meetings that are just agency "hot potato" about who's not going to pay for it has me totally exhausted. But then last year I didn't plan a party either but we did take her to Disneyland for her birthday and had an outrageously expensive birthday lunch with all the Disney Princesses. The Disney birthday was fun and for the two days we had no behavior, it was almost like taking a normal child to Disneyland. A great memory!
Another secret about having a special needs child is that you don't have to tell them that it's their birthday until you're ready. Today we had two therapies and a skating lesson and I knew if the focus was birthday then we wouldn't make it through the day. She had a great day, made it through therapy and toward the end of skating I told her today was June 21, her birthday and we were meeting Dad for dinner at her favorite Mexican restaurant for taco, beans and rice. Much cheaper than the Disney, Princess lunch of last year. She was so excited. Every week after speech, if we had good behavior we get ice cream at a Baskin Robbins near the hospital. Her favorite thing is to look at the ice cream cakes and every week she talks about getting one for her birthday. Well today, I told her after dinner we would get an ice cream cake for her birthday and I got huge hugs and kisses. There's such a genuine and child like quality when she grabs you around the neck with kisses that I always get teary. Then I told her there were presents at home and got more hugs and kisses. Then I said yes to candles and got more hugs and kisses. Dad had a pink, birthday balloon when we met him at the restaurant and he got hugs and kisses. After choosing a cake that was way too big for the three of us, there were more hug and kisses while waiting to pay for the cake. We headed home and sang Happy Birthday, blew out candles, opened presents and ate ice cream cake. Took lots of pictures and video and treasured the happy evening, another nice birthday memory.
Our journey is about how life has changed since we adopted a little girl from Iraq who is deaf and has other challenges.
Tuesday, June 21, 2011
Thursday, June 2, 2011
Mental health makes me crazy
After Z's bad days I always spend time trying to figure out why she (in clinical terms) became unstable or ( in not clinical terms) why she flipped out. Could be change in routine, school ended. Her sleep has been weird again. She doesn't feel good. Her thyroid or meds are off. Weather or full moon. Etc. Etc.
So I spent a couple days doing that and then yesterday she really had a full blown tantrum, totally aggressive, in public. It started in the new swim school, the poor new swim instructor looked terrified. I tried to explain that she might get her hair pulled or maybe a pinch but after 15 minutes I had to have the teacher help me haul Z out of the pool. Z plops her wet screaming self on the pool deck. I can't carry or even drag her any more so I just walk out and Z eventually follows. She followed me out of the pool and shoves and pulls my hair, this continues all the way out to the car. My concern always is that from a distance it looks like I'm beating her up instead of the other way around. No one ever asks if they can help, guess I can't blame them. I finally got her in her restraint vest in the car and her seat belt locked. But I can't get far because she now knows how to open the automatic doors on the van. Can't drive with the door open so I pull over and facebook on my phone until she settles down enough so I can drive home. Don't think we will go back to the swim school!
Today was better, she was so happy to go skating and so proud of what she's trying to do. The girls at the rink are so sweet and helpful with her, probably why Z likes it so much. Tammy, her coach signs and really likes Z so Z feels comfortable with her. All around positive experience for her.
The even crazier part of all of this is what I do when Z is at her summer program and sometimes even when she's here. I get to deal with the insurance and bureaucratic BS. The secondary insurance is suppose to pay copays that the primary insurance doesn't cover but every time they change administrators they refuse to pay so we appealed the issue and won but now they still won't pay. So today I tried to find out if I need to appeal again or can I send the court paperwork from the first time, no one is sure. Duh, helps me, not. Then the secondary insurance wants a letter from the primary insurance saying what they will cover regarding the residential treatment center including how long they will cover and what the copays will be. That's not how insurance works and of course the secondary insurance would never commit to any of these requirements. And I want to say to them, what do you care about co-pays because you don't pay them anyway. I can't tell you how many times I have given my name, ID #, Z's name, DOB, address to a voice automated system so that I can talk to a person and given them the information again. I know it's for security and I appreciate that but I really should be on a first name basis at this point or have my own special speed dial code. In actuality the primary insurance has been good but the secondary is through medicaid because she's adopted through the state and the mental health portion is a for-profit mental health provider, red flag for anyone who has worked in mental health. They have layers and layers of management people and amazing (not) customer service people that make it impossible to get a straight and accurate answer about anything. But in all fairness, I have to say that we have a case manager who is always trying, very gracious, often gets my venting and is caught in the middle of all the layers. I'm convinced that the system is designed to create mental instability so you give up and don't ask them for anything, ever! If you think this all sounds very confusing and cynical, you are exactly right. Can you imagine my state of mind and list of questions when I get to meet with the medical director of the above mentioned mental health organization next week? Our grown daughter used to say "you don't want to deal with my mother", this may be one of those times!
So I spent a couple days doing that and then yesterday she really had a full blown tantrum, totally aggressive, in public. It started in the new swim school, the poor new swim instructor looked terrified. I tried to explain that she might get her hair pulled or maybe a pinch but after 15 minutes I had to have the teacher help me haul Z out of the pool. Z plops her wet screaming self on the pool deck. I can't carry or even drag her any more so I just walk out and Z eventually follows. She followed me out of the pool and shoves and pulls my hair, this continues all the way out to the car. My concern always is that from a distance it looks like I'm beating her up instead of the other way around. No one ever asks if they can help, guess I can't blame them. I finally got her in her restraint vest in the car and her seat belt locked. But I can't get far because she now knows how to open the automatic doors on the van. Can't drive with the door open so I pull over and facebook on my phone until she settles down enough so I can drive home. Don't think we will go back to the swim school!
Today was better, she was so happy to go skating and so proud of what she's trying to do. The girls at the rink are so sweet and helpful with her, probably why Z likes it so much. Tammy, her coach signs and really likes Z so Z feels comfortable with her. All around positive experience for her.
The even crazier part of all of this is what I do when Z is at her summer program and sometimes even when she's here. I get to deal with the insurance and bureaucratic BS. The secondary insurance is suppose to pay copays that the primary insurance doesn't cover but every time they change administrators they refuse to pay so we appealed the issue and won but now they still won't pay. So today I tried to find out if I need to appeal again or can I send the court paperwork from the first time, no one is sure. Duh, helps me, not. Then the secondary insurance wants a letter from the primary insurance saying what they will cover regarding the residential treatment center including how long they will cover and what the copays will be. That's not how insurance works and of course the secondary insurance would never commit to any of these requirements. And I want to say to them, what do you care about co-pays because you don't pay them anyway. I can't tell you how many times I have given my name, ID #, Z's name, DOB, address to a voice automated system so that I can talk to a person and given them the information again. I know it's for security and I appreciate that but I really should be on a first name basis at this point or have my own special speed dial code. In actuality the primary insurance has been good but the secondary is through medicaid because she's adopted through the state and the mental health portion is a for-profit mental health provider, red flag for anyone who has worked in mental health. They have layers and layers of management people and amazing (not) customer service people that make it impossible to get a straight and accurate answer about anything. But in all fairness, I have to say that we have a case manager who is always trying, very gracious, often gets my venting and is caught in the middle of all the layers. I'm convinced that the system is designed to create mental instability so you give up and don't ask them for anything, ever! If you think this all sounds very confusing and cynical, you are exactly right. Can you imagine my state of mind and list of questions when I get to meet with the medical director of the above mentioned mental health organization next week? Our grown daughter used to say "you don't want to deal with my mother", this may be one of those times!
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