Thursday, August 30, 2018


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!

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 she abandoned 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...

Monday, May 14, 2018


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:

Friday, February 09, 2018


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


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.

Friday, December 15, 2017


I 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. 

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?

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. 

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. 

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. 

Monday, September 04, 2017

Labor Day

Anthony 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.

Thursday, April 20, 2017


Anthony is going to be 12 in two months! Crazy!

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.

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.

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!