Anthony has been doing this thing lately - I mean, he has done it forever but recently it's been every night and late into the night - where he bangs on his door. We got him a nice heavy door installed but it's totally a situation of, all the better to bang the shit out of the door, guys, thanks! We have been ignoring it the last few nights and it's really helped. The problem is if he needs attention of the bathroom variety, we don't know until we go up there. Luckily he is banging the hell out of his door so he can't hear us go up but it's trying. I mean, it's all super trying! I don't want to complain all the time but MY LORD it is making us really tense. All weekend he just screams and screams and SCREAMS and SCREAMS.
I want to say the screaming and the shitting are really ruining me but I don't want to be crude. The wailing and the wasting? The pooping and the pppppp party noises? I can't make it work, so I guess we will stick with the crude one. During Anthony's whole life, I have thought if I can just fix this one thing I'll be okay. If I can just get him to not scream so much, sleep better, stop running away, eat better, on and on and on. But I do feel like this is the hardest part, the bathroom issues. The bathroom and the blathering, ha! It's hard because if he has an accident, you have to take care of it. If he pees on something when you are out, or GOD FORBID poops, that's a pretty big matzoh ball out there, you have to take care of it. If we are at home and want to put him up in his room because we've told him, if you do _____ again, you are going to your room, we have to put him in a pull up and put him in those pajamas and THEN put him in his room. And he's thirteen! Am I going to be doing this when he's 18? 23? Good God, it's too much to think about.
I feel like my ears are ringing all the time, like when he was little and I could hear him screaming no matter where I was. The other night Mike and I had both fallen asleep, and he woke us up banging on that door, I mean, it is a modern miracle that it doesn't wake up the girls but it sucks that it wakes us up too. I can't believe it doesn't wake them up, I can't believe it doesn't wake up the neighbors.
Anyway. I don't know what my point is. Life is hard. There's the lesson for today!
Thursday, August 30, 2018
Medicaid Waiver in Indiana
An Open Letter to Anyone Responsible for the Medicaid Waiver in Indiana:
Anthony has had the Medicaid Waiver for several years now. I think it's been five years. We have really only had one good year out of those five, and by one good year I mean a year in which we could use the waiver, and we could be confident in his respite staff, that we could actually get some respite from constantly caring for him. We went to NYC for our tenth wedding anniversary, so it's coming up on four years, I guess, and his respite staff person met my parents at our house every day after being at Little Star and she took care of him until bedtime, when she got him through the bath and gave him his medicine and got him ready for bed and safely in his bedroom. After sheabandoned left us to move on to greener pastures, we have really not had anyone since, for any reasonable amount of time.
We had the one who thought Anthony was "messing with her" and who was "embarrassed" by Anthony. We had the one care company who thought we should look for someone to be respite staff at maybe our church. We had the one who took off all the time. We had one who treated the job like it was what she could do if she didn't have any other plans. We have a great one now, but she started this past Monday and her last afternoon with Anthony is next Wednesday, and she'll be off Monday for the holiday, ha! We are hopeful that with summer break coming, we will have more staff available to fill in for more shifts.
We ended up doing three nights of Parents Night Out at Easter Seals Crossroads and it was great, every time. The second time the girls went and they had a great time - Felicity didn't go because she had a softball game, but it was fun for Mike and me to be able to go to a game of hers together. It was so hard to get him started in those Parents Night Outs, I always feel like I have to fight for every damned thing with him and I'm so sick of it.
The other day at Little Star, I was talking with his therapist and she was looking at him so fondly, she was saying that she is trying to stay with him a little longer, she likes him so much. I mentioned to his morning therapist that I was looking at a fellow learner's long hair and man bun and I was thinking maybe that would work for Anthony and an hour later, I get an email from his program manager with pictures of the man bun she had crafted for him. They all really love him! I have to remind myself of this because so many people are so thoughtless, they make me think that he is not lovable. I have to fight for so many things for him, I get caught up in that thinking, I think maybe he doesn't deserve it. It hurts my feelings that someone doesn't want to spend time with him! Which is ridiculous because it has nothing to do with him, most of the time. If someone who is supposed to do respite care work with a child who has autism and they don't LIKE him, then I don't want them to do it anyway.
But it's so hard. We are feeling so jerked around by the woman who hires the staff people, it's almost comical. Someone starts and we like them and they literally can only do like three shifts because they have another job. I was telling the afternoon therapist that and she was like, why would she only work three shifts? Why start at all? YES EXACTLY.
I want them to know that even when we have respite, it doesn't really free us. We are never free of our obligation to take care of our kids, even if we are at work, or asleep, or not in the same state as they are! We have to take care of them and they are always on our minds. But Anthony is on our minds in such a different way, it's so much different with him. Even when I am at work and he is at home with Mike, I am still worried about him. When Mike is home with all four of them, it's so hard, and doors can be left open, Anthony has run out several times while I've been at work. This is not to say that Mike can't take care of him but it's just that when it's just one adult and all four kids it's almost too much. It's getting easier as the girls get older because they don't leave the doors open as much, etc., but man. It's heavy, figuratively HEAVY on my heart and brain. I am always afraid that he is going to run out the door and into traffic. That he will have a seizure and suffer instant death. That he will jump out of his window. That he will - I mean, anything. He doesn't have the capacity to stop himself from getting hurt and in fact engages in behavior that could hurt him and I feel like I never take a deep breath until he is asleep every night. It's exhausting. It's beyond exhausting and it's never going to stop.
But when we used to have our wonderful respite staff, I felt like we could relax a little bit. I felt like we could be with the girls in a different way and they could see me in a different way. It took a little while but once we got there it was so great. It was so great, in fact, that Mike called it when he said this is never going to last, she is going to ruin every one else for us. And he was right!
We off this waiting list after being on it for five years and it's almost worse to have had it and now not have it. It's not definitely worse because Christina, our wonderful staff person, was so great and really taught us a lot about Anthony. She could presume competence in him in a way that I still am trying to do, years later. So it is better to have loved and lost, in this case. But I would like to love again! I would like to find someone who could really like Anthony and enjoy seeing his progress and spending time with him. I would like to go out to dinner with Mike sometime at dinner time. I think of the song from Fun Home, I want, I want, I want...
Anthony has had the Medicaid Waiver for several years now. I think it's been five years. We have really only had one good year out of those five, and by one good year I mean a year in which we could use the waiver, and we could be confident in his respite staff, that we could actually get some respite from constantly caring for him. We went to NYC for our tenth wedding anniversary, so it's coming up on four years, I guess, and his respite staff person met my parents at our house every day after being at Little Star and she took care of him until bedtime, when she got him through the bath and gave him his medicine and got him ready for bed and safely in his bedroom. After she
We had the one who thought Anthony was "messing with her" and who was "embarrassed" by Anthony. We had the one care company who thought we should look for someone to be respite staff at maybe our church. We had the one who took off all the time. We had one who treated the job like it was what she could do if she didn't have any other plans. We have a great one now, but she started this past Monday and her last afternoon with Anthony is next Wednesday, and she'll be off Monday for the holiday, ha! We are hopeful that with summer break coming, we will have more staff available to fill in for more shifts.
We ended up doing three nights of Parents Night Out at Easter Seals Crossroads and it was great, every time. The second time the girls went and they had a great time - Felicity didn't go because she had a softball game, but it was fun for Mike and me to be able to go to a game of hers together. It was so hard to get him started in those Parents Night Outs, I always feel like I have to fight for every damned thing with him and I'm so sick of it.
The other day at Little Star, I was talking with his therapist and she was looking at him so fondly, she was saying that she is trying to stay with him a little longer, she likes him so much. I mentioned to his morning therapist that I was looking at a fellow learner's long hair and man bun and I was thinking maybe that would work for Anthony and an hour later, I get an email from his program manager with pictures of the man bun she had crafted for him. They all really love him! I have to remind myself of this because so many people are so thoughtless, they make me think that he is not lovable. I have to fight for so many things for him, I get caught up in that thinking, I think maybe he doesn't deserve it. It hurts my feelings that someone doesn't want to spend time with him! Which is ridiculous because it has nothing to do with him, most of the time. If someone who is supposed to do respite care work with a child who has autism and they don't LIKE him, then I don't want them to do it anyway.
But it's so hard. We are feeling so jerked around by the woman who hires the staff people, it's almost comical. Someone starts and we like them and they literally can only do like three shifts because they have another job. I was telling the afternoon therapist that and she was like, why would she only work three shifts? Why start at all? YES EXACTLY.
I want them to know that even when we have respite, it doesn't really free us. We are never free of our obligation to take care of our kids, even if we are at work, or asleep, or not in the same state as they are! We have to take care of them and they are always on our minds. But Anthony is on our minds in such a different way, it's so much different with him. Even when I am at work and he is at home with Mike, I am still worried about him. When Mike is home with all four of them, it's so hard, and doors can be left open, Anthony has run out several times while I've been at work. This is not to say that Mike can't take care of him but it's just that when it's just one adult and all four kids it's almost too much. It's getting easier as the girls get older because they don't leave the doors open as much, etc., but man. It's heavy, figuratively HEAVY on my heart and brain. I am always afraid that he is going to run out the door and into traffic. That he will have a seizure and suffer instant death. That he will jump out of his window. That he will - I mean, anything. He doesn't have the capacity to stop himself from getting hurt and in fact engages in behavior that could hurt him and I feel like I never take a deep breath until he is asleep every night. It's exhausting. It's beyond exhausting and it's never going to stop.
But when we used to have our wonderful respite staff, I felt like we could relax a little bit. I felt like we could be with the girls in a different way and they could see me in a different way. It took a little while but once we got there it was so great. It was so great, in fact, that Mike called it when he said this is never going to last, she is going to ruin every one else for us. And he was right!
We off this waiting list after being on it for five years and it's almost worse to have had it and now not have it. It's not definitely worse because Christina, our wonderful staff person, was so great and really taught us a lot about Anthony. She could presume competence in him in a way that I still am trying to do, years later. So it is better to have loved and lost, in this case. But I would like to love again! I would like to find someone who could really like Anthony and enjoy seeing his progress and spending time with him. I would like to go out to dinner with Mike sometime at dinner time. I think of the song from Fun Home, I want, I want, I want...
Monday, May 14, 2018
May
I haven't posted since February. But today I was going through my email and I found this cute picture of Anthony eating salad and thought I should post it. He has been making HUGE strides in the eating area lately. He goes out to eat once a week with Little Star and he's been eating a salad with every meal, with ranch dressing (ugh, ha) he eats burgers, pizza with all sorts of stuff on it, eggs, omelettes (although he only eats those at Little Star, we have no success with it at home yet), tacos, the list goes on and on! We have been trying to give him lots of fruits and veggies and protein, less bread and sugar, and less processed food and it's been great. It has, of course, not been without its problems. He only ate the same foods for a long time and it has been doing kind of a number on his system to have new foods introduced. But it will be better in the long run, and it's very exciting.
He is taking a new medicine in addition to his old medicine for epilepsy. Apparently it tastes bad and we had been putting it in a smoothie (with prunes, bananas, strawberries and almond milk) but he has gotten sick of those so we have just been making him suck it up. It is frustrating to see a neurologist for anything. Maybe they are so smart by the time they know that much about the brain that they just can't relate to anyone on a human level? But he is on his third and they are all just - ugh, the way that they are. Difficult. He was having a lot of seizures in March and we called to get an emergency appointment and the soonest he could get in was April, six weeks later. It's insane, it's like, it's your kid and he has seizures, a rare side effect of which is SUDDEN DEATH and you are just supposed to assume it won't kill him to wait.
Also one of the things that causes seizures for Anthony is exhaustion and some nights he is just ... awake. We can let him sleep in and we do but it would be better, I think, if we could give him some kind of a sleep aid at say midnight, when he is not going to be able to sleep on his own. I asked Mike to ask the neuro about it and she said have you tried melatonin? Not for nothing but I was hoping for something a little less likely to be recommended by the clerk at the GNC! What the hell? I have heard from many people that melatonin has been successful helping their kids fall asleep but not stay asleep, so I just - I thought maybe a MEDICAL DOCTOR could help me out. Wrong again!
We are having no success with a respite care taker. We had one that was coming on Saturdays but she canceled/rescheduled for the third Saturday in a row and we asked for her to be taken off the case. It makes me cry to talk about it, it is so frustrating. It is someone's JOB to find someone to do this job and yet, here we are, YEARS into it and just ... nothing. It's really hard to find staff, they tell us and I just sit there. And? It's hard for me to do my job too! I'm a teacher and sometimes kids don't want to listen, they sometimes don't want to learn but do I say, oh well! We are having a teaching problem right now!? NO! This is for respite for US, so that we don't go crazy as caregivers and lose our minds and just ... not much of a priority for anyone. It's very depressing. Then I talk to his case manager about it and she says he can have music therapy. I'm like, can he do hippotherapy? NOPE. Okay then. Thanks anyway, Indiana!
He hit Felicity twice yesterday and knocked her down. The first time she bounced up and said I'm okay! but the second time she was really sad about it, which makes ME really sad about it too. Why does he DO that?, I'm always asking Mike, but no one knows. Eternal mysteries abound at out house.
Good things, let me think of good things. He is better in the car. He had a bad weekend but before that he was hitting me less and less. He has been having less seizures. He is good at Little Star, for the most part, he loves his therapists right now. And as always, they love him too. He is super lovable, thank GOD because if he wasn't, I'd really be out of my mind. MORE out of my mind, ha! Here's that cute picture:
He is taking a new medicine in addition to his old medicine for epilepsy. Apparently it tastes bad and we had been putting it in a smoothie (with prunes, bananas, strawberries and almond milk) but he has gotten sick of those so we have just been making him suck it up. It is frustrating to see a neurologist for anything. Maybe they are so smart by the time they know that much about the brain that they just can't relate to anyone on a human level? But he is on his third and they are all just - ugh, the way that they are. Difficult. He was having a lot of seizures in March and we called to get an emergency appointment and the soonest he could get in was April, six weeks later. It's insane, it's like, it's your kid and he has seizures, a rare side effect of which is SUDDEN DEATH and you are just supposed to assume it won't kill him to wait.
Also one of the things that causes seizures for Anthony is exhaustion and some nights he is just ... awake. We can let him sleep in and we do but it would be better, I think, if we could give him some kind of a sleep aid at say midnight, when he is not going to be able to sleep on his own. I asked Mike to ask the neuro about it and she said have you tried melatonin? Not for nothing but I was hoping for something a little less likely to be recommended by the clerk at the GNC! What the hell? I have heard from many people that melatonin has been successful helping their kids fall asleep but not stay asleep, so I just - I thought maybe a MEDICAL DOCTOR could help me out. Wrong again!
We are having no success with a respite care taker. We had one that was coming on Saturdays but she canceled/rescheduled for the third Saturday in a row and we asked for her to be taken off the case. It makes me cry to talk about it, it is so frustrating. It is someone's JOB to find someone to do this job and yet, here we are, YEARS into it and just ... nothing. It's really hard to find staff, they tell us and I just sit there. And? It's hard for me to do my job too! I'm a teacher and sometimes kids don't want to listen, they sometimes don't want to learn but do I say, oh well! We are having a teaching problem right now!? NO! This is for respite for US, so that we don't go crazy as caregivers and lose our minds and just ... not much of a priority for anyone. It's very depressing. Then I talk to his case manager about it and she says he can have music therapy. I'm like, can he do hippotherapy? NOPE. Okay then. Thanks anyway, Indiana!
He hit Felicity twice yesterday and knocked her down. The first time she bounced up and said I'm okay! but the second time she was really sad about it, which makes ME really sad about it too. Why does he DO that?, I'm always asking Mike, but no one knows. Eternal mysteries abound at out house.
Good things, let me think of good things. He is better in the car. He had a bad weekend but before that he was hitting me less and less. He has been having less seizures. He is good at Little Star, for the most part, he loves his therapists right now. And as always, they love him too. He is super lovable, thank GOD because if he wasn't, I'd really be out of my mind. MORE out of my mind, ha! Here's that cute picture:
Friday, February 09, 2018
February
Thank God January is over. Now it's almost Lent and then there is always the promise of Spring. Poor Anthony and the winter, he just doesn't do well at all when he doesn't get out a certain amount of the day. I wish so much that we could go for walks like we used to, jeez we used to walk everywhere around our house downtown. Ha, I look back on Dumbbell Joanne Kehoe at that time, we walked the same exact route every time we walked it, Anthony couldn't stand to vary it at all. I can't believe I wasn't more sure that he had autism, I wish I had just been able to accept it and move on. In the same exact way every time, ha!
Anyway, the Parents Night Out went really well! The girls weren't able to go because I messed up the paperwork, I blame the lady who runs it but it could be me, I suppose. We went and got him at like 9:00 and not 10:00 and he had had not one but TWO accidents and was wearing a giant pair of shorts held up with a rubber band when we got there, but still - it went okay. He did it! He did it and he didn't go crazy and attack any medically fragile children, so I'm calling it a win. I never see him the way other people do, though. We walked in to Easter Seals Crossroads, I mean, you are basically not there unless you have some sort of Special Need, right? So we walk in and tell the dude at the desk that we are there for Parents Night Out and that man cut his eyes at us and said doubtfully, how old is he? I said "he's 12!", and breezed right by him. The cut off is 13, I know, and he is big and tall for his age but man! How welcoming! What a lovely and warm human to have at the front desk!
I have been taking him to speech on Tuesday and Little Star on Wednesday so Mike can get to his draconian office on time and it's been going well. It's not great, he is sometimes crazy with me, but it's been OKAY plus it's nice to spend more time with him. Sometimes I feel like I never see him and then I think, I don't want to see him, I don't want to get hit in the face all the time. BUT then I think maybe he is hitting me in the face because he misses me? Not in a Streetcar Named Desire way but like, he is trying to get my attention? So we will see, things are going okay with him and me so maybe more time together will be good.
What else. He needs a haircut. I dread it but we will probably have to do it soon. He is so tall, I kind of can't blame that guy for saying he looked older, he was like a giant among Liliputians that night at the Parents Night Out thing. I swear he is taller every morning when he wakes up than when he went to sleep.
Lately he has been using his iPad for saying how he feels - not with me but with his speech therapist. She had us make videos of all of us on his iPad, saying hi and that we were at school/work right now but we'd see him later. He has been saying that he missed me and so I guess this is a comfort to him. Everyone is so good, I was like, hey sit here and make a video for Anthony. Say Hi, it's Felicity, I'm at school right now, but I'll see you later! and she just did it. They love the camera, ha!
Wednesday, January 24, 2018
January
Is January the longest month or is that just me? Mike and I are not drinking for January and looking back at our December selves, I think what the hell? What in the WORLD were we thinking? Why would it be a good idea to not drink during January when February is right after it? The shortest month! I don't even know.
Anthony is doing okay, Christmas break is over, we had a FOUR day weekend for MLK day, even though he was not scheduled to have off on Monday. We all had a snow day on the Friday before it, my school was closed, the girls' school was closed, it was in fact pretty bad out, especially later in the afternoon. I took the girls to a 1:35 movie and it was okay getting there but it was SUPER rough getting home, so we weren't mad about that. But Monday was a SHOCK, I have to say. Whatever, I've said before, we can only do what we can do.
Anyway, on that Monday, I had bought tickets to Sky Zone for the girls so they had to go and I didn't think Anthony would enjoy it because I figured it was going to be crowded. Mike ended up taking the girls and I stayed home with Anthony and we had a pretty nice time! He really was good, he has had many nice moments over the last few weeks.
Last night I had dinner with my sister, it's Devour Indy, the Restaurant Week of Indianapolis and we went to a new small plates place which was super good. I was waffling whether I would go out with her after but it was so cold out I decided just to go home, after the grocery. Thank GOD I did, because there had been a terrible, TERRIBLE T E R R I B L E poo situation in his room that poor Mike was just finishing cleaning up when I got home. I know from experience that that is the WORST, here you have just cleaned up the worst mess you ever saw and then the other person gets home when it's cleaned up and you feel BAD, like you wish you had pictures or something because here YOU have it burned on your brain and the other person just has no idea. Ugh. it's the worst! Anyway, so he had this poo explosion nightmare last night and then he was super rotten this morning. Thankfully he was good here, and he didn't start to mess with me until we were in the parking lot of his school, taking off his seat belt, etc. He poked me right in my eye on the way in and then he lay down in the doorway and after a minute I just left. Boy I am not really loving his morning therapist, but that is mostly because she doesn't seem to like him. He has only ever had one other therapist in eight years that I have felt this way about and it's very unnerving. I am guessing it's me and hoping for the best.
This Friday is the first Parents Night Out, if you are reading this and could say a prayer or think positive thoughts for us/him Friday night, I would appreciate it. I would just love it if he could do this, use some waiver funds, maybe he could have some fun, maybe WE could have some time where we are not so tense and miserable? Wouldn't it be nice! We will see.
Anthony is doing okay, Christmas break is over, we had a FOUR day weekend for MLK day, even though he was not scheduled to have off on Monday. We all had a snow day on the Friday before it, my school was closed, the girls' school was closed, it was in fact pretty bad out, especially later in the afternoon. I took the girls to a 1:35 movie and it was okay getting there but it was SUPER rough getting home, so we weren't mad about that. But Monday was a SHOCK, I have to say. Whatever, I've said before, we can only do what we can do.
Anyway, on that Monday, I had bought tickets to Sky Zone for the girls so they had to go and I didn't think Anthony would enjoy it because I figured it was going to be crowded. Mike ended up taking the girls and I stayed home with Anthony and we had a pretty nice time! He really was good, he has had many nice moments over the last few weeks.
Last night I had dinner with my sister, it's Devour Indy, the Restaurant Week of Indianapolis and we went to a new small plates place which was super good. I was waffling whether I would go out with her after but it was so cold out I decided just to go home, after the grocery. Thank GOD I did, because there had been a terrible, TERRIBLE T E R R I B L E poo situation in his room that poor Mike was just finishing cleaning up when I got home. I know from experience that that is the WORST, here you have just cleaned up the worst mess you ever saw and then the other person gets home when it's cleaned up and you feel BAD, like you wish you had pictures or something because here YOU have it burned on your brain and the other person just has no idea. Ugh. it's the worst! Anyway, so he had this poo explosion nightmare last night and then he was super rotten this morning. Thankfully he was good here, and he didn't start to mess with me until we were in the parking lot of his school, taking off his seat belt, etc. He poked me right in my eye on the way in and then he lay down in the doorway and after a minute I just left. Boy I am not really loving his morning therapist, but that is mostly because she doesn't seem to like him. He has only ever had one other therapist in eight years that I have felt this way about and it's very unnerving. I am guessing it's me and hoping for the best.
This Friday is the first Parents Night Out, if you are reading this and could say a prayer or think positive thoughts for us/him Friday night, I would appreciate it. I would just love it if he could do this, use some waiver funds, maybe he could have some fun, maybe WE could have some time where we are not so tense and miserable? Wouldn't it be nice! We will see.
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