tag:blogger.com,1999:blog-148067002024-03-14T00:14:37.015-04:00Cutest Baby EVERAnthony Joseph
June 10, 2005Joannehttp://www.blogger.com/profile/00585179358306590340noreply@blogger.comBlogger1624125tag:blogger.com,1999:blog-14806700.post-31295023204079602342018-08-30T14:52:00.001-04:002018-08-30T14:52:15.984-04:00UptightAnthony 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. <br />
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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. <br />
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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. <br />
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Anyway. I don't know what my point is. Life is hard. There's the lesson for today!Joannehttp://www.blogger.com/profile/00585179358306590340noreply@blogger.com0tag:blogger.com,1999:blog-14806700.post-88047869066472909812018-08-30T12:47:00.000-04:002018-08-30T12:47:01.167-04:00Medicaid Waiver in IndianaAn Open Letter to Anyone Responsible for the Medicaid Waiver in Indiana:<br />
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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 <strike>abandoned </strike>left us to move on to greener pastures, we have really not had anyone since, for any reasonable amount of time.<br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
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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!<br />
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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...Joannehttp://www.blogger.com/profile/00585179358306590340noreply@blogger.com0tag:blogger.com,1999:blog-14806700.post-23958813055702403912018-05-14T14:00:00.001-04:002018-05-14T14:00:30.700-04:00MayI 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. <br />
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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. <br />
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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!<br />
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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!<br />
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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. <br />
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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:<br />
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<br />Joannehttp://www.blogger.com/profile/00585179358306590340noreply@blogger.com0tag:blogger.com,1999:blog-14806700.post-66780953227200299532018-02-09T08:29:00.002-05:002018-02-09T08:29:22.362-05:00FebruaryThank 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! <div>
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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! </div>
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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. </div>
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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. </div>
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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! </div>
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Joannehttp://www.blogger.com/profile/00585179358306590340noreply@blogger.com0tag:blogger.com,1999:blog-14806700.post-54593601499629128182018-01-24T11:02:00.002-05:002018-01-24T11:02:34.152-05:00JanuaryIs 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. <br />
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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. <br />
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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. <br />
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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. <br />
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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. <br />
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<br />Joannehttp://www.blogger.com/profile/00585179358306590340noreply@blogger.com0tag:blogger.com,1999:blog-14806700.post-7744722859405791872017-12-15T09:36:00.000-05:002017-12-15T09:36:12.012-05:00TeenI remember reading years ago that the word 'teen' was from the Latin root for angst or misery or something. Lately I've been thinking about it because I feel like our lives are pretty hard - I mean, we are not breaking rocks, we have a roof over our head, we have MORE than just that, we have a good life but overall, it's just hard and challenging to put so much energy into constantly fighting and arguing and saying, but wait! We need more than this! This is not fair! And then I think they are going to get harder, maybe exponentially, when Anthony becomes a teenager and then an adult. It is daunting, to say the least. <br />
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Today we are supposed to find out from Anthony's center whether or not he can go there next Friday, the following Wednesday, Thursday, or Friday. They are closed from the 22nd through January 2, but because we, and, I assume, other people who have their child in therapy and not at a typical school, have complained that it's hard on their kid to be off like they are not in need of this therapy. The more I think about it, the madder I get. This year there was a poll to take, will you send your learner in if we had these days available? So of course Mike and I filled the poll out YES for all the days, then we get a form that we can fill out last week, where we can say AGAIN what days we would like him to come, THEN we find out that if a therapist wants to work, maybe he can come. Um. As Mike said, that is so _____ stupid, who will come to work if given an option to NOT come to work? And to add insult to injury, they are closed next Friday, when the girls are still in school and when all three are taking part in the Christmas program at THEIR school, so we are assuming that we are going to find out that no therapist wants to work so Mike will have to stay home with Anthony. I had already gotten a sub at work that day because of the program and the girls' early dismissal. What can you do? I complained and I am told about all the things that happen during a shut down, floors cleaned and waxed, painting, etc., etc. and I think - who cares? I don't care! I understand what happens during a shutdown! They used to have a shutdown at my Dad's company, because they were a FACTORY! Hospitals don't have shutdowns! The place where Anthony and Veronica go to speech therapy is closed the day after Christmas and that's it. I am also told that in order to stay competitive with the schools, they have to give out holidays like the school to get good therapists. Um. What schools have ABA therapists? The whole CRUST OF THE BISCUIT is that ABA therapists are not teachers, that an ABA therapy center is not a school, what in the everloving hell?<br />
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So. There's that. We have accepted the fact that Anthony will probably be home, and we are planning accordingly. We are doing rakishly okay with respite care. We really like Anthony's new respite staff person, she is very nice, studying special ed, nice to the girls and to our damned dog, who is the neediest jerk you have ever met. But Anthony is so challenging lately and there are times when he - oh, moves out of his seatbelt when you are driving, or lays down on the floor of the car, or drops down to the floor in the mall, or or or - just terrible behavior. So we are working on it, as usual. We have been taking the girls out on Monday and Wednesday so they can be home and maybe be a little more relaxed about going out and it's going okay. His program manager came to the house for one of his sessions and gave the woman who does his respite some tips, I mean, maybe it will work out. Maybe not, maybe this is just how it is, maybe he will just get crazier and crazier until he kills us all, who knows? WHO KNOWS? But presumably, as long as he doesn't, maybe she and he can do some stuff during the break and he won't be too miserable. <br />
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I found out about this Parents Night Out at Easter Seals Crossroads through a Special Needs Parent group that I'm in on Facebook (which I'm not even on right now for Advent, it was making me too crazy and no kind of Christian). I emailed the person and called the other person and NOBODY got back to me, so I just printed out the forms and filled them out and mailed them in with a note about how NOBODY had gotten back to me. The woman who runs it called me and said she was so sorry, blah blah blah. Then she said Anthony is almost aged out of the program, in June he will be 13, and he could do a teen group but it's in Carmel, and it sounds like Anthony needs one on one care and they don't offer that so it's probably not a good option. This is the first thing she says to me. I'm like, okay well, how about the next six months, can we talk about that? She says, yes, but it might not work out for that either, because (and not in so many words) she says that Anthony's behavior sounds pretty crazy and they have 'medically fragile' people there and also neuro typical siblings who can be as young as six months old and they might be in danger if Anthony is there. This is hard to hear. First of all, all she has said to me is negative bullshit about my son whom she has never met and second of all, she sounds like an absolute idiot. I mean, it's Autism 101 that you don't put the slappy 12 year old around the medically fragile six month old? And why isn't Anthony medically fragile, only the way that he expresses HIS disability is that he has some behavior problems? I asked her if she had other kids with autism there and she said yes! They had many autism experts there! And behavior therapists! They had a whole autism department AND different rooms there and a sensory room! THEN WHAT IS THE PROBLEM? I want to say, but I don't. I said I find this to be a very negative reaction, that before you say anything you say all the things that could go wrong, and I find it especially negative when you only called me back after I called, emailed, and finally used the UNITED STATES POST OFFICE to beg you to get back to me. And do you know what she said to me? She said I'M SORRY YOU FEEL THAT WAY. I mean, really! Who still issues that non apology? Don't we all know that's not a thing anymore? I said I'm sorry too! Sorry that you made me feel this way when all I get is negativity and bullshit from the regular world and you are a place for people with disabilities! I'm SUPER sorry about that! So I said, what is the next step? What else do you need from me? And she said, all Hoosier buttsore that I told her what time it was, that the next step was for her to do an assessment and then she would call me back. I said okay I will wait for you, then she sent an epilepsy seizure plan and I sent it back and she sent an email that said "this is the confirmation that I have received the seizure plan". I was DYING to send an email back that said "this is the confirmation of the confirmation beep boop" but I didn't. So we wait, if she deigns to get back to me, maybe he will be able to go to a Parents Night Out and then if he is badly behaved or has any problems, I guess she can say he can't go anymore. Did I say this is a respite thing? That he "gets" to go to it because he has the Medicaid Waiver. <br />
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He has the wrong kind of autism, I'm made to feel all the time. I ran into a woman with whom I used to work a few weekends ago and she mentioned her grandson had autism. I said oh how is he doing? She said he's great! He's on the Chess Team at his school! Oh, I always think. Never mind. But I was talking to Anthony on the ride home yesterday, I said you know Anthony, you have autism. And that makes you behave in some funky ways, you have different reactions to things than the girls do because they don't have autism. That's why you go to your school and they go to their school, you have different gifts and abilities. I said Daddy and I love you and we are proud of you and we will never stop trying to help you, we will get through this! And Anthony said, wheeeeee youuuuu!, which I imagined as thank you, Mom, that support means the world to me. I am going to keep repeating positive things until they come true, or I lose my mind and drive off the road, whichever comes first. Joannehttp://www.blogger.com/profile/00585179358306590340noreply@blogger.com0tag:blogger.com,1999:blog-14806700.post-18641433312940507772017-09-04T17:49:00.000-04:002017-09-04T17:49:21.943-04:00Labor DayAnthony is really putting the labor in Labor Day, if you know what I mean. This child hates a holiday. He has been hitting me a lot today, it is hard to take but I feel like I've said all I can say about it. He's only getting bigger, I used to think we had to work so hard while we could so that he could ... not be so big and still be so badly behaved? I don't know, I feel like it's easier to take from a smaller person, bad behavior. I get so, so down about it. It makes me argue with everyone, makes me a bad mother, person, friend, certainly wife. I'm still a good waitress but that's it. <br />
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<br />Joannehttp://www.blogger.com/profile/00585179358306590340noreply@blogger.com0tag:blogger.com,1999:blog-14806700.post-15591341029074500142017-04-20T09:31:00.000-04:002017-04-20T09:31:03.375-04:00AprilAnthony is going to be 12 in two months! Crazy!<br />
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He is doing okay, he is hitting me less, which I think is a combination of him improving and also me not being around much. I've been working a lot and busy with the girls stuff so we haven't seen each other too much. He has been getting out a little bit more with his respite girlfriend, the weather has been better, they've been swimming and going to parks. I wish he had more time with her, or with someone, but it's an imperfect system. Even though his place pays pretty well, we can't find anyone to do this job. He should get 12.5 hours a week of respite and we are lucky to use six. We are trying, but it is trying, too. <br />
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Last night I took Maria and Felicity to Maria's first baseball game. I was talking to this other mom, who also has four kids, Boys 13 and 11 and girls, 7 and 5. This mom was saying how she is such great friends with other parents from school, how much stuff they do with other baseball families, which just makes sense, it seems, because their boys have played baseball together, been together a LOT for six months out of the year for the last seven years. I was thinking how nice that would be, to be social and friendly with people because you have things in common, things that your kids do together so you do them together. We just don't have that and it's too bad, because I really have always enjoyed being friends and social with people. I don't think Mike cares as much but it feels really unnatural to me to not be friends with people. It's a strange situation. <br />
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Anyway. Anthony is going to be doing this bike thing this summer and you have to buy a bike, so I am going to ask people who would give him a birthday present to contribute to his bike fund. I am looking into how much it costs, I have so much to do, it seems, recently. I'll be glad when the girls are done with school and we can relax a little, ha ha just kidding! <br />
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<br />Joannehttp://www.blogger.com/profile/00585179358306590340noreply@blogger.com0tag:blogger.com,1999:blog-14806700.post-61139804462869539072017-03-02T15:32:00.002-05:002017-03-02T15:32:47.683-05:00I Can ShineYesterday, Anthony's longest with him therapist (I'm trying not to say oldest), Pam, was saying how far we've coming. Remember when he was lying on the ground for HOURS a day yelling and screaming? Look how far we've come! It made me feel really good, because we have come far. Even though it stinks that he is pushing me and hitting me, it won't last forever. I HOPE.<br />
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I just signed Anthony up for this <a href="http://icanshine.org/">biking program</a> this summer, I am SO hopeful that he can learn how to ride a bike! Say a prayer it works, I really think he'd like to ride a bike! Joannehttp://www.blogger.com/profile/00585179358306590340noreply@blogger.com0tag:blogger.com,1999:blog-14806700.post-5690070904091010792017-02-15T14:34:00.001-05:002017-02-15T14:34:07.728-05:00FebruaryThere must be something nice to say, right? It can't be all bad. We got Anthony some boots for Christmas and they fit but he kind of hates them. We have to move him into some shoes that aren't Crocs, because he was barely putting his foot in them, it's winter, etc., you know, things were just bad with the shoes. So. I got him these boots and they were okay but not great because he'd wear them and 'tolerate' them at Little Star but he'd always pull his foot out of one and sort of walk on the sides of his feet and I was worried he'd trip. Elizabeth, his respite girlfriend, took him to try on sneakers on Saturday and although we didn't end up going with the pair that she bought we were able to find a EXTRA WIDE (4E!) size nine pair of sneakers from Penneys and he is wearing them today. So maybe that will be good. I want him to be comfortable but he also has to wear shoes of some kind! So I hope it works out. <br />
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He's in a good situation with speech and occupational therapy. They each see him separately and then co treat for a while every week and it seems to be going well. I like both of his therapists and they send me an email every week to say what they are working on. His speech therapist is the same as Veronica's, and he has speech on Tuesday and her Wednesday but she REALLY didn't like me talking about Anthony on her time so now I get an email and everyone is happy. Happier. Ha!<br />
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My Uncle Leo send the kids gift cards for Christmas, and my Uncle Kevin sent money for them so we got some new clothes for Anthony, some long sleeved shirts and they are really cute. <br />
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He can be very affectionate, he does this thing where he holds and caresses your face. He does it to me, Mike and sometimes to his therapists and it's very endearing. <br />
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Elizabeth, his respite girlfriend, is very nice and things have been going well. Because I am making a positive spin on things, I won't mention that he threw his iPad out the window this weekend when he was out with her and we lost it forever. Live and learn, I guess, we should have told her to keep the windows shut, especially if he is in the back, ha! I have a nice and sweet old friend who emailed me and asked me if she could send us a gift to contribute to the new iPad. We are okay and I told her that, but that really puts a positive spin on it, right? Isn't it nice how someone is always there to be nice and wonderful? <br />
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Here's some pictures. <br />
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Joannehttp://www.blogger.com/profile/00585179358306590340noreply@blogger.com1tag:blogger.com,1999:blog-14806700.post-53462912741839593362017-02-08T19:41:00.000-05:002017-02-08T19:41:27.476-05:00Aggression in Autistic TweenI am hoping this blog post will get me some help. Anthony is 11 and he has lately started to really really push and punch me. He punches and pulls my arm when I'm driving, most alarmingly and then today he slapped me full on in the face. I have never done that to him, he has never seen that kind of behavior. He doesn't seem upset, he seems intent on doing it. I used to think it was a communication issue but now he doesn't seem to want anything, except to hit me! We are asking for help from his team at LSC and we are trying to work with his Occupational and Speech Therapists but so far, it is only getting worse. It is only happening to me, which is terrible luck because I usually go get him from LSC. Anything I search up, as Maria would say, seems to indicate my only option is to drug him but that doesn't seem like an answer. If anyone has any real, solid experience or ideas, I'd appreciate it. Also if anyone has any ideas about .. .what do you call it? Sleepaway places? Nursing homes for children? Just to type it makes me want to jump out the window. Residential homes for children with autism, I guess. To close, help! I need help!Joannehttp://www.blogger.com/profile/00585179358306590340noreply@blogger.com1tag:blogger.com,1999:blog-14806700.post-40402811530206212842016-11-11T14:02:00.000-05:002016-11-11T15:31:08.257-05:00Update<div class="separator" style="clear: both; text-align: center;">
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Rolling around in the chair that I got Mike for his birthday<a href="https://3.bp.blogspot.com/-jAywHHKosPg/WCYqbXpOBWI/AAAAAAAA43o/A-VMbvMcxT8wA7ZvYFGFpoNArEoIy8uEACLcB/s1600/IMG_6333.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://3.bp.blogspot.com/-jAywHHKosPg/WCYqbXpOBWI/AAAAAAAA43o/A-VMbvMcxT8wA7ZvYFGFpoNArEoIy8uEACLcB/s320/IMG_6333.JPG" width="320" /></a></div>
Good Lord! How could it be so long since I've updated Anthony's blog? I feel like I am the worst mother to him, and now I'm forgetting his blog too? I used to be good at at least that! Well. I don't take so many pictures of him anymore, so often I need both hands when I'm with him. He is - he can be wild, to understate it. I hear myself telling people things - well, like the other night I was telling his speech therapist how I would like to work with him on maybe a schedule because he seems so crazed, sometimes, when we are on our way home. I pick him up almost every day, and sometimes he gets really wound up, and he punches me/pushes on my arm so hard that I have to remind myself to not put my right hand on the steering wheel because I have nearly driven into traffic several times. <br />
So. That's a pain, right? I don't want to take pictures of it! So we are working on, as EVER, communication. I feel like when he pushes me like that he really wants something. I don't know what. On his iPad the other day, he was saying "rainstick" and "trampoline" which are both things he has at Little Star. So I thought maybe he is afraid every time when we leave Little Star, maybe we won't go back? So I am trying to be clearer about saying we are leaving now, we will go home, then have dinner, (go to swimming, whatever) and then TOMORROW you can go back to Little Star. On Friday of course I can't say that but he has been going to music therapy for a while on Saturdays so I can say that, I guess. Everything is terrible since we don't have anyone to do respite anymore. There was a moment two weeks ago when I thought maybe we could have it but it was a false alarm because the person they thought they could get didn't drive, couldn't drive because of some sort of problem with their record. MMMM kay. So they were like, we have someone! But they can't do transportation! And I was like, um, okay but can they meet us at our house and go to the stuff that Anthony wants to do? NOPE. They were just supposed to come over and I guess, stay at the house with Anthony, which would be great ON OPPOSITE DAY. So anyway, that was disappointing. Then last night, Mike and Anthony were getting ready to go to swim like every damned Thursday of their lives when our case manager just STOPPED BY to say that she needed to schedule a meeting. They were late for swimming because of this pop in! And she couldn't really say when she could meet but she just ... came by, I guess to make them late for swimming or maybe that was just a lucky happenstance. UGH. This medicaid thing is awful and it makes me SO PARANOID - I think, they get all these people off the wait list and then they say you have THIS MUCH MONEY! Yay! But that translates to a certain amount of hours because the places that you go through only pay their people like $10 an hour, $11 if you're lucky, although $11 was what the last nimrod we had made and she was awful and I still get really mad when I think about her. Anyway, they don't pay well and they can't hire anyone and then we can't get any care for Anthony, it's been through MOST of the year, and that money - guess what happens to that money? It all just goes away from us and right back to the stupid state, even though it is DUE to ANTHONY. So I guess if I were Indiana, maybe I'd dole out a lot of money but to a lot of people so that it doesn't do any good to anyone and then I'd get to keep the money? <br />
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We have been struggling a lot because we used to have respite care and now we don't and Anthony suffered this giant setback when he had to stop going to Little Star and we are just trying trying trying to get back to where we were, which wasn't great but it was better than it is now. <br />
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We do have happy moments, he is doing very well at Little Star and he is doing well by going to speech therapy/occupational therapy on Tuesdays but I am impatient. I want him to do well everywhere. I want him to not scream so much. I want him to be toilet trained at night. I want him to be more lovable to the girls. As Anthony says with his iPad all the time, I want. I want. <br />
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<br />Joannehttp://www.blogger.com/profile/00585179358306590340noreply@blogger.com1tag:blogger.com,1999:blog-14806700.post-36783468022351349812016-02-26T10:56:00.000-05:002016-02-26T10:56:24.794-05:00Friday UpdateLast Lent, I wrote about and said nice things about one of my kids each day during Lent but this year I have given up sweets and am saying a rosary every day. But I thought why not update on Fridays? Maybe I can do it. <br />
<br />Anthony is doing fine, the last few weeks I've been taking him to swim because we don't have respite staff right now, ugh that is driving me crazy but I am breezily going by it. Last night I went and exercised at the Y for a little bit while he was swimming but I got back in plenty of time to see him. He looks like he is doing everything but swimming and I was saying that to one of his teachers and she said look how hard he is working! It takes a lot to hold up his hips like that! He is great! So that was nice and a good reminder, too, that even if it doesn't look like he is working hard, he always is. <br />
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The weekends are super hard but everything else is going fine. He has been going to Costco with Mike and has been helping! Like Mike will tell him to get something and he will! This feels like a miracle. <br />
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Here's his school picture and a rare picture of the four of them. He is getting really big and tall. He weighs a ton, he is falling away to a ton, as my sweet grandfather might have said but we are just trying to make most of his snacks healthy ones. What else can I do? His hair is getting really excellent but Mike doesn't love it. He never lets us comb it so it gets kind of janky but mostly I think it's so cute, just like him. <br />
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<br />Joannehttp://www.blogger.com/profile/00585179358306590340noreply@blogger.com0tag:blogger.com,1999:blog-14806700.post-90498567855155393382016-02-01T13:33:00.002-05:002016-02-01T13:33:44.833-05:00FebruaryLast night, Anthony had a seizure. It was the same in some ways in that it was at the end of a long and rough day. It didn't last long. He slept a lot after. But it was different in some other ways. I think he was coming down the stairs when it happened, because before we knew it, he was at the bottom of the stairs, lying down. He never lies down, but he had several times that day, which always makes me think, crap!, I should have known! Also he didn't throw up and he always throws up so I went looking for it and didn't find it, which is a weird thing to do. He seemed to have a mark on his head and we thought, did he fall down the stairs? I was right in the kitchen, I never heard a loud noise. It is a little too mysterious for me. <br />
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He has been doing this thing lately where he sort of bashes in to me and I hate it, I'm afraid he's going to knock me over. But then he has a seizure and I think, does he know? Is he begging for help? I'm going to talk to his therapists about putting in some icons on his iPad for "I don't feel good" or "I have to lie down". I don't know, it's not perfect but I want to do something. <br />
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Anyway, we are as usual plugging along. I guess - I don't know, I feel like some days are so rough all we can do is maintain. I feel bad when I feel grateful he has a seizure because I know that means he'll sleep well. It's messed up but what can you do? He has been doing very well at swimming and well at OT, he's doing well at Little Star, and we are working on it at home. And now it's February which is closer to March and Spring! <br />
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<br />Joannehttp://www.blogger.com/profile/00585179358306590340noreply@blogger.com0tag:blogger.com,1999:blog-14806700.post-41204265469041689952016-01-04T13:27:00.000-05:002016-01-04T13:27:49.557-05:002016Anthony is going to turn eleven this year. That is crazy, to me, and also not so. I mean, I can barely remember when he wasn't around, when I wasn't thinking about him all the time, so it seems like he's a lot older than that, sometimes. <br />
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He is back at Little Star today, thanks be to God. That is a long break for him and he has been having a severe regression, toilet training wise, so it was really getting kind of nightmarish at the end. It's not his fault, but LORD is it frustrating! Anyway. He has been going to this Incrediplex place near us with Christina on Saturdays, and he did some of that over the break, and some Bounce House places, and it's been going okay. He got a Casio Keyboard for Christmas and he likes that too. We are in the middle of yet another insurance denial nightmare. Mike said, and it's true, that is the black cloud hanging over our heads at all times. One of the reports that they sent us said that his IQ was 21 and that he had gone as far as he could go in life! I told Mike I know it's not true, but there is no way to not have a reaction to reading something like that about your own sweet boy. There is a hot place in hell for those demons that work for insurance companies. <br />
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Anyway, here are some pictures!<br />
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<br />Joannehttp://www.blogger.com/profile/00585179358306590340noreply@blogger.com0tag:blogger.com,1999:blog-14806700.post-72374130466061378352015-12-02T10:52:00.001-05:002015-12-02T10:52:31.484-05:00DecemberI am just sitting around because I have off today and I don't feel that good so I figued I'd update some blogs. Anthony is doing okay, except he hurt his toe and I had to take him to the ER. It was two weeks ago today, I stayed at the girls' school for a few minutes after I dropped them off so I didn't see Mike and Anthony before they left. Mike called and said that Anthony's big toe was really bothering him and it looked horrible, then when I went to pick him up, his toenail looked sort of lifted (ugh) off his toe and his therapist John said he had mostly stayed in the cube all day. So I was driving home, I had a babysitter for Felicity so I asked if she could stay later and she said she could so I took him the ER. I was worried that something was broken or infected. He did pretty well at the ER, although all they did was take a few xrays and determine nothing was broken. They couldn't get a bandage on it, but they did get some Bacetracin on it and assured me nothing was going to get infected, so that was good. But he missed OT because we were there for 90 minutes for basically one minute of seeing a doctor, five minutes with a nurse, and maybe seven minutes with the xray. Whatever. Once the toenail feel off, it was better (ugh) but now he has messed up the other one! I guess he is kicking his door? So I am going to figure out a way to put some kind of cushion on the back of his door. It is always something, I wish I were more creative or handy. Here's some pictures:<br />
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<br />Joannehttp://www.blogger.com/profile/00585179358306590340noreply@blogger.com0tag:blogger.com,1999:blog-14806700.post-64121133796264663672015-11-12T21:53:00.001-05:002015-11-12T21:53:09.668-05:00Pictures and CatchupAnthony is doing well, all things considered. He is swimming on Thursday, going to OT on Wednesday. He likes his OT a lot, she is really into music and really gets him. She, like everyone else in our lives, really likes him. That is a real gift, how likable he is. And when he likes you, he'll do anything for you! Sometimes that would make me think that he doesn't like us, but it doesn't work like that, with any of our kids. Here's some pictures!<br />
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Here's a rare picture of all four, plus the dog, plus my new vacuum!<br />
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Anthony went as Sheldon from the Big Bang Theory for Halloween. Mike thought of it, it was brilliant!<br />
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Some of Anthony's favorite things these days are his iPad, Spotify and his playlist, and the dog. <br />
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I don't have a ton of pictures of him, he is always on the move and I am always trying to be ready for anything, ha!<br />
<br />Joannehttp://www.blogger.com/profile/00585179358306590340noreply@blogger.com0tag:blogger.com,1999:blog-14806700.post-90670020320081771252015-09-28T20:14:00.000-04:002015-09-28T20:14:02.856-04:00PainIt's so surprising to me how painful it's been to be in a school full of kids, some of who are Anthony's age. Some of them are named Anthony! I was talking to one of my classes about the year they were born and some of them said 2005, some 2006, and I thought really? They seem so ... not grown up, but advanced, ahead of Anthony. Because Anthony is our only boy, I guess there are just things we are not going to experience. The boys in fourth grade seem so different than the girls. In some ways, they are the same but Anthony has never really had that boyishness that I see in other boys his age, not for a long time anyway. <br />
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I have been volunteering for recess at the girls' school and the other day I was watching the fourth grade boys play football. You have to watch them closely or they might fight, it's so physical. So I was over there a lot and there was one kid named Anthony and apparently he always had the damned ball because everyone kept yelling Anthony! Anthony, right here! Anthony! Way to go, Anthony! My eyes filled with tears and I thought, great they are going to kick me out for being the crying mom volunteer, but it was very moving to me.<br />
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Things have been hard lately, largely because a) the damned new insurance company is denying us and we had to pay a doctor (like a PhD doctor) $250 smackeroos to write a report about Anthony, to prove that it's medically necessary that he get ABA treatment. For you English students out there, I think this might be a good example of irony - Anthony has a PRESCRIPTION for 40 hours of ABA therapy a week from a MEDICAL DOCTOR but we have to get a REPORT from a PhD to say that he needs it. Whatever. <br />
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Also, he is being kind of pushy lately and he is spitting water out of his mouth, which - there is no way to shine that up, is there? It sucks and he does it to everyone, us, Maria (Ankony!, she yells!), he did it to Laura last week when she was babysitting (probably for the last time, ha ha boo hoo). It's awful and so VIVID, you know. <br />
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I mean, it's just been hard lately. We are so worried all the time, about money and about the future and getting water SPAT in your ding dang EYE, it's just exhausting. Even though most of the time I feel okay, I know we are going to be okay, I loved the Pope's visit and to see him with all those disabled children made me be reminded of the fact that Anthony is whole in God's eyes but even still, knowing all that, it kills me that he will never run on that parking lot, never play kickball with those other kids. <br />
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Anyway. I don't know how to wrap it up, ever, when I go on and on. Here's to hoping either things get better or I toughen up! Joannehttp://www.blogger.com/profile/00585179358306590340noreply@blogger.com2tag:blogger.com,1999:blog-14806700.post-74900891937051807002015-08-22T10:18:00.001-04:002015-08-22T10:18:22.785-04:00Music and DogsAnthony has been listening to music via Spotify on his iPad. His team at school has been working with him getting his headphones, going to the Spotify app on his iPad, and choosing his playlist. Yesterday was the first day we listened to music on the way home, I mean, he listened to it on his headphones, and he seemed to like it. We always listen to music, classic and guitar-driven rock, super loud, on the way home, but he gets frustrated when there are too many commercials. There are always too many commercials, ha! He's doing really well with it, and I think it might be great if he could bring his iPad and headphones to church so we could all go. <br />
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Things continue to be good with our dog. Anthony and she both seem to be settling in. Mike noticed yesterday that she eats all her food when you give it to her. Previously she just would eat a tiny bit and leave a bunch of it, and Mike says that shows that she's getting used to living here. Anthony is getting used to her too, he's not as surprised when he sees her for the first time in the day. Mike saw him sitting on the couch with her the other day, just laying his arm on her body, which is so sweet. We have been trying to teach him to pet her instead of waving his fingers in front of her face, and we are having limited success, which I'll take. <br />
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Mostly I feel like things are going good. We had an upsetting experience with Anthony's new pediatric neurologist but we are getting a new one. This dude WAS the new one, so it's a pain but honestly. We have to be able to find a neurologist who isn't a complete jerk, right? This most recent guy had us take Anthony for an MRI, and he had to be sedated and he missed the whole morning at school. Then the doctor's assistant called and said that his MRI was 'abnormal' but not 'dangerous' but the doctor wanted to meet with me and Mike to talk about it. We made an appointment for the next week and went in but the woman in the office asked where Anthony was and said the doctor wouldn't see us unless we brought Anthony. They really expected that we'd say oh, okay, and we'd leave and make another appointment for when we could bring Anthony! I asked to see the assistant, I still had the voice mail on my phone where she said for ME and MIKE to come in and never mentioned Anthony. This woman who came out, good Lord. She was SUCH a jerk, she came out arms folded, chin up, churlish and childish and awful. She said it was THEIR POLICY that the patient had to be there and I said well honey, you should have told me that because now I'm not leaving until I see that doctor and he tells me about the MRI of my son's BRAIN. Ugh, so then the doctor came out, and shook my hand, the creep, his handshake was just like you'd expect, all warm and weak. Anyways, he said that there were signs of perhaps a loss of oxygen at birth and that there was some grey matter which should be outside the brain was inside the brain and that's why he has epilepsy. I said so it doesn't have anything to do with the fact that he has autism and he said nope, pure coincidence. <br />
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This seems like BS to me. I know people who have had a loss of oxygen at birth and a lot of times they have - well like, a friend of mine's son has cerebral palsy, and autism. I have another friend whose sister had a loss of oxygen at birth and she has cerebral palsy and intellectual development disorders. I mean, I know Anthony has autism, obviously, but he has never presented as having intellectual disorders. He is really smart, he was a smart baby and he is a smart ten year old. Also, it just seems so crazy to me that he just happens to have epilepsy when he has autism too. Like, a lot of kids with autism have epilepsy and half of those kids are non verbal. All this plus the fact that we know like 1/1000 of what there is to know about the brain leads me to believe this is bs. But we are getting a new neurologist and I guess we'll figure it out. <br />
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Here's a cute picture:<br />
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Joannehttp://www.blogger.com/profile/00585179358306590340noreply@blogger.com0tag:blogger.com,1999:blog-14806700.post-27357106251924268402015-08-10T08:21:00.004-04:002015-08-10T08:21:39.003-04:00DogSo we had a new dog come over yesterday and I guess she is going to be our new dog. I think the woman from the rescue place is bringing her over on Wednesday night and I am taking her to be spayed on Friday morning. It's so strange that they are just giving us a dog, I feel like when I have a baby and we leave the hospital. I think, surely there are more tests than this? You're not just going to trust us? <br />
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Anyway, her name is Maggie and she is much more of a puppy than I would have thought I'd like. But we weren't having any luck with older dogs and I don't really want to get an older dog who is going to die in just a few years, I think that would be upsetting. <br />
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Anthony took a LONG time to warm up, honestly, he was freaking out, stranger than he's ever been with a dog before. Mike and I were fighting the urge to be despondent about it, the girls were really excited and adorable, Maria especially, but it was SUPER annoying because they wouldn't stay away when we were trying to inch Anthony in near her. Finally he petted her but - I mean, I felt like he was a little kooky with her, waggling his fingers near her face and sort of yelling. He was really excited! <br />
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Oh I hope it works out. I hope that some damned thing works out for us some time. Joannehttp://www.blogger.com/profile/00585179358306590340noreply@blogger.com1tag:blogger.com,1999:blog-14806700.post-7422403067107174762015-07-23T10:08:00.000-04:002015-07-23T10:08:03.922-04:00Victory in our TimeLast night I was driving Anthony to OT, the traffic is horrible. They have been doing construction on this route forever, months and months. It's so frustrating and I am just grateful that we only do it once a week. Anyway, I was sitting in traffic and Anthony started grabbing at my shoulder, pushing at me. I offered him my water and he pushed that away, so I got his iPad out of his bag and gave it to him and right away he said "I need to go to the bathroom". I said okay, give me a second, and I got out of my far left lane of traffic and shot over to the right so I could get to the next light and then to the NEXT light and then park at a Hardees, where we ran in and got into the bathroom where he peed for two minutes straight! I was super excited and kept telling him, great job, Anthony! So we were leaving and he pulled me over to the counter where I bought him a Sprite. <br />
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It was so, so great. First, he used his iPad to tell me something, THEN he held it until we got to the bathroom and THEN he knew that he deserved a reward AND where it was. We had never been there before but of course he's been to fast food restaurants before and knows where everything is. <br />
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Then he went to OT and worked with his new therapist, who he really seems to like and who seems to love him. It was a really great and sweet victory. Joannehttp://www.blogger.com/profile/00585179358306590340noreply@blogger.com2tag:blogger.com,1999:blog-14806700.post-79102176944169723072015-07-10T11:07:00.001-04:002015-07-10T11:07:12.893-04:00July Christina went on vacation last week and we all missed her, but she's back this week. She and Anthony went to a park on Monday night and she sent us this picture:<br />
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He loves to climb all the way to the top of whatever it is, a rock wall, whatever. He is doing okay, I guess, although he gets really mad sometimes. He was screaming and crying the night before last so much, and so late, that I thought he'd never calm down. I don't know why he gets the way he does. When it happens I feel like I don't know anything. <br />
<br />He is doing really well at Little Star, he worked with Pam, one of his long time therapists, this week and he did great. She told me yesterday he made 56 unprompted requests from her in just one afternoon. So it's pretty normal, he is doing very well at Little Star and just all right here. I can't be engaged with him every second of every day, particularly because Felicity is being SUCH A JERK lately and they are arch enemies and we spend most of our time just picking stuff up off the floor, wiping up water that he's spilled, or pulling them off each other. It's pretty miserable, now that I think about it. I guess we should just look at the picture. <br />
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<br />Joannehttp://www.blogger.com/profile/00585179358306590340noreply@blogger.com0tag:blogger.com,1999:blog-14806700.post-59422572247950818342015-05-27T21:39:00.002-04:002015-05-27T21:39:30.824-04:00EpilepsyHow is Anthony's epilepsy, you might be wondering? It's fine. He hasn't had a seizure in several months, but I don't want to start talking about it too much or I'm afraid I'll jinx it. He's taking his medicine so well, twice a day, and he seems fine, and no seizures, soooo, I'll take it! <br />
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He is doing well in school and he is doing OKAY with toilet training. I can't believe I've been talking about it for like four years but in fairness, that is not as long as I didn't do training for him, sooo we are probably not yet even. <br />
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My biggest problem with Anthony lately is that I feel like I am always yelling at him, when I talk to him, and I don't see him that much. My wrist has been broken/getting better for like eight or nine weeks and I started avoiding him in the beginning because I was afraid he'd hurt me and now, between that and the fact that he spends three nights/days with Christina, there's just not that much time. We are making a concerted effort to spend more time with him and to do stuff as a family, and I hope it gets better. This wrist has messed me up. <br />
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He has this super nice afternoon therapist, his name is John. He's so good with Anthony, I mean, they all are but I love to see Anthony with a guy. When Mike and he are together, or when he is with a male therapist, I feel like he seems like a guy's guy, and when he's with his sisters, he seems so annoyed, which anybody would be, but anyways. He's a good addition to Anthony's team. Also, his old therapist Sarah is back, who we all loved, and I'm sure he's thrilled. <br />
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He's going to be ten on the tenth of next month. TEN. Sometimes when I am listening to him yodel away, or when he is sitting on my lap, I think of the little baby he was. I have never spent that much time with anyone in my LIFE and I will never forget it. I think that's why it doesn't go fast for me, I feel every second I spent with him. I feel like I remember every day. I used to get mad about that but now it makes me so happy, that I can think back to when it was just the two of us. And my floors were so clean because I vacuumed so much. Ha! Anthony Beck, keeping me vacuuming since 2005. <br />
<br />Joannehttp://www.blogger.com/profile/00585179358306590340noreply@blogger.com0tag:blogger.com,1999:blog-14806700.post-10759678275382433542015-04-30T18:07:00.001-04:002015-04-30T18:07:35.879-04:00AutismI always read these things about how you should tell your child they have autism and I always think pssssh I don't have to do that. I don't know why I always poo poo it in my mind. But today I was driving Anthony home and Felicity was sleeping and I told him he has autism and that's why it's hard for him to communicate, among other things. I told him that he was our only kid who had it but that it didn't mean he wasn't as smart, as great, or as loved as the girls, it just meant we had to do some different stuff with him. I said that's why he went to Little Star and that Mike and I would take care of everything he needs. I cried quite a bit talking to him but I was wearing my sunglasses so I don't think he knew. I'm glad I did it. Joannehttp://www.blogger.com/profile/00585179358306590340noreply@blogger.com2tag:blogger.com,1999:blog-14806700.post-28550564588735959612015-04-29T09:20:00.001-04:002015-04-30T21:19:50.642-04:00Occupational TherapyLast night I was sitting outside Anthony's OT appointment and I could hear it wasn't going well. "Leave my glasses alone", she was saying and, "ouch! That hurts me!", ugh. She moved a table and two chairs out of the room that I guess he was climbing on. I waited until he settled down and then I went out for a walk and when I came back and he finished, the OT and I were talking about why he is so riled up at the beginning of every session. <br />
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She said she has other non-verbal kids but none with the cognizance that Anthony has. I know most mothers would think this but I really think it's true. He is so smart, and he has all the words, he understands everything, he just can't say it. She said once she got him some water and a snack he really settled down. She said she thinks he is thirstier than she thinks he is, and I agree. I think about how much the girls ask for water, it is ALL they do some days, it seems like. If Anthony were thirsty half that much, that would still be pretty thirsty! So we decided I'll bring water and a snack to OT from now on and we'll see if that helps. <br />
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I worry so much that he is scared, that he needs something and can't get it. I'm hopeful that now that he is back full time at Little Star that we can keep working on his communication so he can use his iPad to communicate more needs, maybe even feelings. Here's to hoping!Joannehttp://www.blogger.com/profile/00585179358306590340noreply@blogger.com0