Tune in Next Monday...

... to see if we survive this week.  Yesterday was a terrible day for us and Anthony and I told Mike later, usually on Sunday it's terrible and I feel awful but at least I know everyone can get back to it the next day.  Yesterday it was just awful and I knew that Anthony would be home for one more week.  One more week!  And then I watch the weather and they say that it's supposed to rain/snow on Friday Saturday and Sunday and I think if he is off next week for weather I won't make it.

I was watching my friend's son go to Communion on Sunday.  He has autism and cerebral palsy and he limps pretty good, he just had some kind of back surgery, he has had a hard time of it lately.  But there he was, walking up to Communion, taking Communion and I am so jealous.  It has been a few months since we stopped taking Anthony to church, Mike and I slept in until 8:30 this Sunday, which has literally never happened but everyone has been so sick and we have all slept so badly I guess everyone just finally crashed.  So anyway, I was thinking about it this week in church and I wish things could be different.

Anthony got a big exercise ball for Christmas, except I can't blow it up as big as I'd like.  He got a Woogly ball, and yesterday I remembered I bought him some of that kinetic sand, in its own case which closed and everything but he shoved so much of it in his mouth that I had to take it away.  Everything was kind of a fail, gift wise, but what can you do?  He also got a lot of underwear and some soft pajama pants and he's been having one million accidents and lying around a lot, so those have come in handy.

Today we went to OT, we normally go on Tuesdays at 6:00 but she asked if we wanted to switch it up and we did, just to have something to do.

This break makes me really, REALLY dread the summer but I'm trying to Live In The Moment so I'm not thinking about it too much.  That woman at his public school was so sketchy and strange about what the options are for summer, I just don't know.  But like I said I can't worry about it too much.  I read things on the Internet about kids who are sick and who die and moms who are sick and who die and I think maybe I shouldn't worry so much about my petty problems.

What else?  I guess nothing.  His respite girlfriend is switching her hours after next week, she has a class on Mondays so she is going to come on Thursday, Friday and Saturday.  That kind of stinks but it will be helpful for Mike as I am almost always at work on Friday and Saturday.

Ugh I can never wrap up these complainy posts.  Happy New Year!  Anthony will turn ten this year, I told Maria this morning and she said "wow, ten!".  I know!

Two Nights

Two nights in a row Anthony has had a seizure.  Ay yi yi, it is the worst!  Last night he was in the tub and Mike was in there with him and he just ... started having a seizure.  He was sitting up but he was very out of it, he looks like it is not him behind his eyes and he kind of drools and he is so, so still.  I mean, I don't like that he is having a seizure but he is as relaxed as I have ever seen him.  Anyway, I hauled him out of the tub and we dried him off and got a pull up on him and pulled on pajama pants and just basically told him that we were right there, that he was going to be okay.  He is so funny - he had his beads in his hands and right after he came out of it he started whipping those beads around and then rolled over, asleep.  He slept for several hours and then woke up so Mike tried to give him his medicine but he threw it up immediately.  Then he went right back to sleep and this morning we gave him his regular morning dose but I guess we should have given his his higher dose, his night time dose?  Lord, I don't know the rules with this stuff.  I looked it up and found a link that said if he throws it up in less than 15 minutes I can wait and give it to him again but if he keeps it down for 15 minutes, he's gotten it.  He usually just throws up right away, but we'll have to give it a try.

We are going to call the doctor tomorrow but in the meantime, is he okay?  How would we know?  I remember when he was diagnosed with epilepsy - by US, basically, I thought well, finally.  Finally we can get some answers around here!  But it's not true, it's just more questions with no answers, and super high stakes.

I emailed the dog service place to say that Anthony had epilepsy now too and I didn't know if they needed to know that but since we were super desperately waiting for a dog, I wanted to be sure nothing held it up.  The woman wrote back and said that the woman I needed to talk to was going to be working with matched clients and dogs for the next two weeks but she would get back to me afterward.  It's so depressing but I am determined to not let it be.  I know our dog is out there.  I just wish it would be soon.  I am praying a one year long novena and asking for a miracle.  I don't know why it's not our miracle now, but it has to be soon.  It has to be!  Something has to go our way and it may as well be this, I figure.

I mean, things are going our way.  We went to Anthony's Christmas Party at LSC this Saturday and Christina came with us.  She is wonderful, a Godsend.  He has great therapists, I love his teacher so much and she loves him.  Maybe we have too many good things going on, ha!  Time will tell but in the meantime, keep us in your prayers.

Review of a Review of Parenthood

I really love Parenthood, even though it drives me bonkers.  I like Scandal too but it drives me so bonkers that I don't even like it as much as I used to.  But I feel like I long ago accepted that the Braverman family of Parenthood drives me nuts but I love them and I am used to it.  I read Alan Sepinwall's review of last week's episode before I watched it, which I sometimes do, because Parenthood is on Thursdays at 10:00 and I rarely am able to watch it on Friday, because I am home with Felicity, and then I work all weekend, and I wanted to know if anything big happened.

So I read his review and I thought, good God, what did Max do?  Max is the character with Autism, although they always say Asperger's on the show.  He is the middle son of Adam and Kristina Braverman and he is ... maybe 13?  Fourteen?  I don't know, but he was a little kid when the show started.  So here's what Alan Sepinwall (a reviewer who I love, and not just because he's from NJ) had to say about the Max part of the episode:

This week's worst offenders: Kristina and Adam, who are spectacularly out of line for the majority of the episode. It's not just that Kristina has completely failed her role as headmistress and protector of the other kids at Chambers by choosing to be Max's mother first and foremost, but that she and Adam are doing such a lousy job of being Max's parents. There is trying to make the world bend a little to accommodate a kid with special needs, and then there is enabling your son's ongoing harassment of other kids in his class, getting angry when other people object to it as such, and even assuring Max that he was not harassing Dylan, even though he really, really was. When Dylan's mom says that they only see things through the lens of Max, it is perhaps the truest thing anyone has said in the history of this show. Yet this entire fiasco — including Kristina being rightly called out in front of all the other Chambers parents — goes away after one apology from Max, even if it's incredibly eloquent and self-aware for him. At least Kristina and Adam finally recognize how wrong they were, but they were way too self-righteously incorrect for way too long.

So, I read this review and I thought wow, what did Max do?  In the storyline, Max goes to a special school (the school storyline is ridiculous - lots of things on Parenthood are ridiculous - Sarah writes a play and it's going to be produced on Broadway, Kristina ran for Mayor of San Fransisco!  Insane. ) with kids who have behavior problems but DEFINITELY they are not all on the autism spectrum, I have no idea what is supposed to be wrong with these other kids - not wrong but you know what I mean.  Maybe they have learning problems and that's why it's not clear from just seeing them in school situations, social situations.  Anyway, so Max has been liking this girl and they've been friends, she has spent an inordinate amount of time at their house because her parents are away all the time, working, and last week he declared his love for her because he saw her making out with some other boy.  Or maybe it was just a coincidence, I can't remember.  Anyway, he made a big spreadsheet about why she should like him more than the other dude, it was desperate and sad and kind of funny, too, because he made some good points.  
So I watched the show and I didn't get any of it, really.  I mean, he was upsetting this girl a lot.  The girl went to Kristina (the headmaster of this screwed up school, which they seriously created in like five weeks) to ask to be taken off a project with Max and Kristina said no, it will be fine, which was a TERRIBLE thing to do as a headmaster but - I mean, they are in a school for kids with behavior problems!  The point is to work through them, I thought, but I guess I could see how I'm wrong about that and it was just terrible of Kristina the Headmaster not to just find another partner for the girl.  But she didn't and then Max ended up really yelling at the girl and just - endlessly pushing her, he does not understand why she doesn't like him, it's not logical, etc., he was super annoying.  
But this review.  Not even of the show but of the PARENTING job that Kristina and Adam are doing, that really got me.  "she and Adam are doing such a lousy job of being Max's parents".  I mean, that just gets me right where I live.  I truly think ALL parents, even pretend ones, I guess, are doing the best they can and I mean, it's really, really hard to advocate for your son and it doesn't always work out.  I mean, they are doing a lousy job of being his parents?  Ouch.  And, his ongoing harassment of other kids in class?  He is being a jerk about this girl not liking him, yes, but good God - ongoing harassment of other kids?  At his school for kids with behavioral problems?  
I immediately start thinking of Anthony, about how he, like, wants to rub the beard of every man that he sees.  He doesn't talk so sometimes he just walks up and if we are not fast enough to stop him, he'll rub the face of any bearded man.  Mostly we have not had bad experiences, with this, we jump in, apologize, etc.  I am not a fan of the beard but I have to say, in my experience if a dude has a beard, that dude is pretty nice about it when some kid wants to rub it.  Anyway, I am off the subject, which is that I wonder do people think Anthony is harassing them? Attacking them, if he does that?  It honestly never occurred to me.  
So I read this review and I think man, he is way off track and I go to the comments and it turns out that everyone agrees with him and no one agrees with me.  And it made me really, really scared for Anthony.  His respite girlfriend told me that tonight, at the bounce house place where she took him, some little girl said to her, about Anthony, he's weird.  She told me she didn't know what to say to the girl, she didn't want to argue with some kid and she didn't want some mom to be mad at her for talking to her kid.  I said of course I don't expect her to say anything, I felt like just smiling was the right move.  Leave the freaking out on little kids to me, I told her, ha!  
I feel so dumb, like I'm just walking around thinking people are enlightened enough to know that just because some kid can't get off a subject, or gets unreasonably upset about something, that it doesn't mean that that person is dangerous, is a stalker is harassing someone.  The actor who plays Max is really, really good.  I can see Anthony and autistic traits in the character,  which I guess makes me feel for him more and I know for SURE it makes me feel for the parents, excuse me, the lousy parents.  
Here's some comments:

I know  it isn't related at all but with all of the recent news of Bill Cosby and the current Rolling Stone feature on assaults on campus, specifically UVA, the Max stuff really upset me. This is aggressive, stalker, physical, unpleasant behavior by a boy who is only moderately controllable. Maybe Max is too good of an actor but the whole profiling of violent kids, this type of behavior seems way too reminiscent.... 
We diss on Kristina and Adam because we want to believe they have the capacity for growth and they undermine it everytime when they fly off the handle whenever Max loses his temper 


This really gets me, and explains a lot to me.  I mean, Max does lose his temper but it's not the same as a neurotypical person losing his temper, being a baby or, like, not getting his way, it's just not!  I mean, they are called meltdowns because they are different than tantrums, different than losing your temper.  I think about the scene in Rainman (I know.  I mean, I know that that doesn't represent all autistic people but I think it might help me illustrate my point) when Raymond freaks out and starts screaming, really screaming and yelling and I remember seeing that movie a long time ago and I never thought, wow, Dustin Hoffman is really harassing Tom Cruise here.  In the scene where Raymond is listening to Tom Cruise and his girlfriend doing it and mimicking her, I didn't think what's up, perv?  Who would?  Are there people who thing that?  I mean, I guess there are, because the behavior of an autistic CHILD on this show reminded a commenter of the GANG RAPISTS at UVA.  
So I don't know.  I know a lot of parents of kids with autism, and just parents and just people who I know watch and like/don't like but still watch Parenthood.  What do you think?  Did Max seem scary?  Do you think Kristina and Adam seem like they are doing a LOUSY job with him?  I am honestly interested, I feel like I don't know which way is up anymore.  Even more than usual, ha!

November

Anthony has been going to Little Star 2.5 days a week and to his regular school 2.5 days a week for a few weeks now and it, like every other thing is going okay now, although I was worried about it in the beginning.  We couldn't do it this way without Little Star, because his therapist takes him to his school on Wednesday afternoons.  If she didn't, I'd take Maria and Veronica to school and then Mike would take Anthony to LS, then I'd take Felicity to her preschool at 9:00 and then at 12 I'd go get Anthony and take him to LS and then at 2:00 go get Felicity and then at 3:15 get the girls and then be home by 3:50 to meet the busy, which is *crazy town*, so I'm glad I don't have to do it.

I think he likes being back at Little Star so much, so it's good for now.  I'm guessing that what that means is that it will be a matter of months before the insurance company decides that he doesn't even get 20 hours a week anymore and then the shit will really hit the fan.  We are already struggling so much with his behavior, it is definitely crazier and worse since he started at his school, getting his free and public education, but what can we do?  I am really beat down at this point, just hoping for the best and expecting the worst.

Mike is at church, we have decided to stop going all together.  Anthony just has too hard a time going and sitting still AND being quiet for one hour.  The way that he is noisy is SO noisy that there's no way that it's not disturbing to everyone around him.  Maybe someday we will be able to go again but today is not that day.  Maybe if we get a dog, maybe if Anthony has a turnaround, maybe if his sisters EVER grow the hell up so they can be counted on for good behavior.

He has been having a lot of fun with his respite care.  Yesterday he went to the Rhythm Discovery Center downtown, where he made a drum (broken today already by Felicity) and played the drums for a long time.  Christina, his respite girlfriend, said that they have drum circle type thing every Saturday and that he did pretty good, so maybe he can go again.  Today he is doing a rare Sunday activity with her, she is making up some hours and the company where she works is doing a group outing, so that should be fun.  I mean, I feel like if you asked Anthony and he answered he would say he has a pretty good life, that he's pretty happy.  Sometimes he is unhappy and sometimes he is frustrated, but who isn't?  Overall, we are doing okay, and I am praying every day and night that we get that dog and that the insurance company doesn't mess with us for a while.  Keep the faith!

First IEP Conference

So today was Anthony's first case conference while he was an actual matriculating student.  I was not looking forward to it, because I wanted to talk about two things in particular.  The first was that his teacher mentioned to me that one of her assistants was a "yeller" and had yelled at Anthony, that that was her way of getting his attention when he was misbehaving.  I mean, it's not that I think Anthony is a perfect little flower and never does anything wrong, it's not that *I* haven't raised my voice to him over the last nine years, but he is in a special education classroom and I don't really think he is misbehaving when he is climbing on a table or something, or shouting, or crying.  I believe that within autism, all behavior is communication and if I didn't believe that, he and I would both be in trouble because he acts in really crazy ways sometimes.  Also, and this is maybe more particular than I get to be at this juncture, but my whole thing with these people is that we brought Anthony to them and said what do you think?  He is prescribed 40 hours a week of ABA therapy but the insurance company says he is ready for his free and public education, what do you think?  Basically we said I don't think you can handle this, and they said we can handle this.  So if they can handle it, and they can provide his special ed teacher with assistants who can handle it, I don't expect "yelling" or "screaming at him" to be an acceptable form of teaching.  So I mentioned it at the conference and hoo boy, it got very awk and uncomf, to quote my friend Brenda, in that room.  The principal and the Special Ed Coordinator or whoever she is, all of a sudden sat up like they had something rammed up their backs and the Special Ed Coordinator was all, um, er, argh, was there an incident?  Because I don't know about an incident.  So the teacher said that she was working with the assistant and it was getting better, plus Anthony wasn't doing any of the behaviors that he was doing so it was kind of resolved at this stage.

Then the speech therapist said how she really thought it would be great for Anthony to try this LAMP approach, instead of Pro Lo Quo on his iPad, which he has been using for a long time and it would be great because he could have more icons and more words and he could really have a language explosion because he would have more words! and he was doing AMAZING with her and I was all, hold the phone.  I mean, I said, the only way I could agree that Anthony was doing amazing with you is if we have completely different versions of the word amazing.  I said Anthony is not using his iPad here at all, hardly, and we know that because he has been backsliding in quite a few areas, like making requests, and also because his iPad usage is just fine every day when he comes home from school, when he was at almost nothing left when he used to come home from a day at Little Star.  I said that Anthony had been working with Pro Lo Quo for quite a while and that it indicated to me a COMPLETE LACK OF AAC devices and Anthony for her to cavalierly mention that she thought we could just switch it up so that he had more "core vocabulary".  I mean, you can put any words into Pro Lo Quo that you need to, it was just bs.

So this was the point where I said that between the screaming assistant, and the lack of iPad usage, the speech therapist saying that he could only take the iPad home for "educational purposes",  and the fact that some of Anthony's 'friends' at school were touching his iPad, his iPad that had a case without a handle, I said all those things together were adding up to make me think that we had a giant disconnect and a misunderstanding of autism, Anthony, and how Anthony uses his iPad.  I said our goal is for Anthony to use his iPad as his mouth and even if the other kids really liked his mouth and it was super cool, it didn't mean that they could play with it or take it away from him.  The school couldn't say that he could only bring his mouth home if it was for educational purposes!

I got kind of upset, when I was talking about the assistant yelling at Anthony for 'misbehaving'.  Right after I talked about that, I went to the part of the IEP prep documentation where the OT said that Anthony used his iPad to request to go to the bathroom and then he played in there so that he didn't have to do any work.  Angela and Kasey, his program manager and speech therapist were clearly shocked and they were kind of upset about it, I thought, and so that made me more upset.  I said, in a choking voice, that Anthony is the hardest working person that I know and that for this occupational therapist to say that he was going in the bathroom to get out of OT was just insane and proved my point, over and over, that they didn't know what they were doing with him.  I said I think Angela and Kasey can back me up on this because they have ACTUAL DATA to show that he works harder than anyone at Little Star, that he flew through his PECS training because he is so smart and devoted to the idea that he can communicate and be HEARD and that for this yahoo to say that he is just going in the bathroom to get out work drove me insane.  And all of this was delivered in a choking voice that I could barely get out of my furious chest, so they were all a little worried, ha!  I mean, I wish I were just the kind of person who could just talk about things that are incredibly important to me and about which I am furious without crying, but I am not, and I don't see anything changing at this late stage in my life.  I was actually just happy that it was a crazy-seeming crying, because I want them to be a little afraid of me, ha!

So everyone talked and we seemed to come to some kind of agreement and then the Special Ed Coordinator said that I mean, Anthony has the ability to communicate, his iPad is RIGHT THERE next to him and I mean, there are times when kids in school aren't supposed to talk anyway, right?  And then I said well now, you have me thinking that although I am TALKING, I am not COMMUNICATING with you because for you to say that makes me think that you don't understand this at all!  I said I don't want Anthony to have his iPad at the ready so that he can INTERRUPT or BABBLE during circle time, for the LOVE of GOD, but everyone else gets to bring their working tongues and mouths to circle time, just IN CASE something comes up and I think Anthony has the right to have that too.  You giant jerkstore, I wanted to say but didn't.  She said blah blah blah of course that's not what I meant, blah blah blah.

THEN she asked about the Extended School Year and I said yes, we were concerned about the summer and I was glad she brought it up because I wondered what was available - was the school open, were there classes, what goes on, I asked.  She was VERY cagey about it, she said there could be 'availability to the classrooms' and that there were some 'camp' options.  I said, after going round and round for a while, well, we would be interested in whatever we could get for Anthony.  I said that since what he's had for years is 40 hours a week, for most of the year, that we have found that Anthony does better when he is busy and occupied and she said well, everyone wishes they could keep their kids busy all summer.  I said actually, while I'm sure that's true, I'm not talking about everyone.  I'm not even talking about all my kids, I said, I am just talking about ANTHONY and I think we are in another situation where you are acting like he is a typical nine year old and I am concerned that you don't understand Special Education or autism.  So we said we'd revisit that in the spring and I said fine.  I mean, really, what the hell?  She is the worst kind of worst, this woman, she is just holding all the cards and barely giving us a peek and then when we want to look at the whole card, or God forbid her whole hand, she snatches them all back and accuses us of cheating.  Like I am somehow rooking the system by asking for Anthony to be educated, and to get whatever else is necessary for him to BE educated.  I wanted to smack her the whole time.

But his teacher said that she wants to come to Little Star to observe him, and she only seems to want to make Anthony, the individual Anthony succeed.  She is really terrific and I am hopeful, despite everything, that we will be okay but man.  It is beyond exhausting and depressing to go into these meetings.  My least favorite feeling is that I am being misunderstood and that's all that happens with these people.  It's frustrating but you know, I  am bullish  for the future.  I think that as long as we stay on it, Anthony can get an education, and I think he has come this far in like 10 weeks or whatever, who knows what else can happen for him?

Fall Break

Anthony is on fall break starting tomorrow, but thank God, he is going to Little Star every day.  On Friday we took all four kids up to Little Star for a parents' night out and we went in and Anthony raced ahead and flung himself to the floor, he was so happy to be there.  I feel excited for him, that he will be at a place all week that he likes so much.

Things are going okay, they are not great and we had a long weekend because his respite care girlfriend was off on Saturday, she was throwing a party for her daughter, who was turning two.  But they are going okay, I mean, they are sometimes okay and sometimes hard but that is true with the girls, too.  Felicity herself could drive a person to DRINK most days, and that honey badger is on break, too.

But as long as I stay in the present and just worry about today today and that's it, I'm okay.  I can't worry about the future, even though it is tempting.  Maria said today "when are we getting Anthony's dog?" and I said I am praying for it every day.  I hope it all works out, I know it will.  I told Anthony tonight when I went up because he was crying, I said, listen - soon we will have a dog and we will send you both to bed and he will hug you whenever you want and then our lives will change.  He looked skeptical and I feel skeptical but what can you do?  We are keeping on keeping on, wish us luck!

Weekend

Anthony went to the Answers for Autism walk on Saturday, with Christina.  His school has always participated in this but it's a long event and we can never go because I can't count on Felicity to want to do anything for that long, so it was great that he got to go this year with Christina.  He had a wonderful time, she sent pictures of him rock climbing:

He really liked it, she said he went up halfway two times, which seems great to me.  Yesterday he was pretty good in church, although he got sick of it by the end.  But one great thing that happened was that this woman I know came over and told me that she is his OT at his public school!  She said she sees him every Friday and that she thinks he is doing just wonderfully.  It made me so happy to think that someone that knows us is there, she also said how much she loved his teacher.  So good things are happening with Anthony, and I want to record those here, too, ha!

Insult/Injury

So today we learned that NOW Anthem isn't going to pay for Anthony's ABA therapist to go to school with him - it has to take place on ABA ground or something.  It's so dumb, we got a letter yesterday saying they were cutting his hours from 40 to 20 and we laughed, we were like, um, WE KNOW!  But I guess that is what they meant.

So now we have to decide whether or not - ugh, whether or not what.  I guess if we send him to school in the morning and Little Star for the afternoon?  But does that mean we drop him at school and then I go get him and take him to Little Star and then get the girls and then go get him?  Because that is a hell of a lot of driving.  Or do we take him to Little Star and then go get him and take him to school?  I don't know.

I don't know but I guess I'm going to find out.  I assume the next step is that they'll just stop paying for the 20 hours and then we'll be completely dropped.  Onward and upward!  Except not upward, ha ha boo hoo.

Epilepsy

Epilepsy is worse than autism, if I am giving these conditions grades.  Here's what I wrote about our weekend on Facebook:

Did I say Anthony spent the night in the hospital Saturday? He was in the middle of a seizure when Mike went to check on him, so I raced home from work so he could take him to the ER. Mike gave him the stuff to break the seizure, but LORD that creates a real Weekend at Bernie's situation getting him into the car. Anyway, the boys spent the night in the hospital as Anthony had another seizure once they got there, and I spent the night with Felicity, who had pneumonia and an ear infection, both undiagnosed until Sunday. In other news, Maria and Veronica are a-okay. **knocks wood**

Like

Poor Mike!  He had the worst of it, I think.  I think about him going up and checking on Anthony, expecting to pull up his blanket and go off to bed himself, and then he finds him, in the middle of a seizure and covered in vomit, ugh.  I mean, I'm sure it's hard on Anthony but I think he is unconscious for most of it.  I would like to be unconscious for LOTS of my life, ha ha boo hoo.  

We adjusted his medication again and now we are just ... waiting?  I guess?  Then he'll have another seizure and depending on what is going on when it happens, we will take him to the hospital or call an ambulance or some thing.  We have to take him to the hospital because it's so awful when it's happening, they last WAY longer than five minutes, and the last two times he has had a seizure and we've taken him to the ER, he's had another one there.  This begs the question, if he has a seizure at home and we give him the valium to break the seizure and then he has another seizure, do we ... give him more valium?  At the ER they give him Ativan on the second one and we don't have that although I wish we did, ha ha boo hoo.because I would take some!  Lots!  

He is really acting crazy lately.  He gets home from school off the bus at 3:50 and - like today, he comes in and I try to have toast ready for him, but he ate eight pieces of toast, dragged a chair over to the cabinet to try and eat the butter in the dish (he didn't succeed today, but he did yesterday), he yells and screams in Felicity's face while she is trying to gain a little solitude in her Princess tent, it's crazy time in Crazy Town.  Maria and Veronica are all up in my grill, can they go to the neighbors, WHY can't they go to the neighbors, WHY do they have to wear shoes, Veronica can only find one shoe, on and on  and on and ON, and it's only one hour until Mike gets home and it feels like ten, seriously.  

Mike and I are both sick with colds, probably from exhaustion because we were both awake most of the night Friday and Saturday.  Then last night we went to bed and I woke up in the night, 2:45, because the stupid light turned on.  We have one of those lamps that you just touch it and it turns on and I guess maybe my brother walked by and the vibration made the light turn on?  Good Lord.  It's almost too much.  When, I wonder, will it be too much?  How will I know?  When I wake up in the loony bin?  

Also, he gets a Communication Sheet sent home every day and it has smiley faces/unsmiling faces for morning, afternoon, and ... some other part of the day.  Today nothing was circled and it said "Anthony climbed on tables all afternoon".  Um, is that communication?  I hate that he is at that damned school and just because it's not that bad doesn't mean it's good.  And he has fall break in like three weeks, one week off, and I'm trying to get him to call full day at his old place but it's First Come/First Served and I may have asked too late so maybe he won't be able to go?  I am dreading it, believe me.  

I wish I could have some good news.  Maybe next time!  

Another Week

This past Saturday, which feels like about nineteen years ago, Anthony slept in super late.  We had to wake him up when Christina got here and that's at 10:00!  I think we just think that if he is tired and needs to sleep, he should, so we try and keep everyone quiet and don't bug him.  But then on Sunday night, he was awake until 2:00 a.m., then around midnight every night until last night, when mercifully, he fell asleep early, like before 10:00.

He had such a rough week.  He was pretty good after school/before Mike gets home, and he was pretty good at OT, but he had some rough times at school and he was really terrible to us at night.  He is doing this thing where he pulls his pull up away when he pees at night and so he gets really wet and we have to change him into new pajamas and a new pull up and then while we are doing that, he kicks and pulls and laughs crazily.  It's awful.  It's so bad that once I do it, change him and I'm all sweaty and exhausted and doubting EVERYTHING, that I can't sleep forever so we have both been really tired this week.  I went to sleep early last night too so I think today is going to be a better day for both of us.

He took off his clothes this week in PE, at school, and he has been taking off his bathing suit at swimming.  He used to take off his clothes a LOT, but he had stopped and now he's starting again and I'm super afraid that it's because he is regressing.  Daily, he is pooping NOT in the potty - well, that's not true.  I think one day he did actually go on the toilet but every other day this week it's gone pretty badly, involving much cleanup and gnashing of teeth.

I hate that every day ends so badly.  It's bad with him and then it's bad with the girls too, Felicity isn't tired because she's had a nap at preschool and so she terrorizes the girls, everyone is crying, Anthony is SCREAMING.  He rushes at his door and SCREAMS, loudly and urgently, and I think boy this is a real loony bin.  And it's like 8:00 and we still have to have dinner and clean the house and get ready for the next day.  We watch one show and it's time for bed and I find it very difficult to go to sleep with Anthony SCREAMING in the next room, ay yi yi, it's too much!

So tomorrow we are going to try to get him up at no later than 8:00 and see if he doesn't sleep better next week.  Back to the drawing board we go, I guess.  Things are going great with Christina, to look on the sunny side, he is going to the company picnic of his respite care place tomorrow, and I think things are going okay at school, despite some problems.  His teacher seems to really love him and I think he is getting used to it.  Here's a picture!

Pencils

Yesterday, I was joking/complaining on Facebook that Maria's teacher wanted her math homework done in pencil, but I don't have any pencils.  I used to have pencils, but Felicity and Anthony both chew on them, she and Veronica write on the walls with them, they have sharp ends which could poke out someone's eye, etc.  I literally have no pens or pencils just hanging around here, the Sharpies are up on the top shelf and I usually put pens in the spice drawer so no one can readily get to them.

So I said that I wished that Maria's teacher had sent home one of the TWENTY FOUR pencils that I sent in in my supply list.  Maria goes to Catholic school, we pay tuition AND donate regularly to our church, we pay an activity fee, AND I fulfilled supply lists for both Maria and Veronica, without complaint.  Yes, I think 24 pencils is a lot of pencils, and 20 glue sticks is more than Veronica could ever use in one year, but I just did it, just got what I was supposed to.

Then when I went to the roundup and back to school night, I signed up to volunteer - in the library, to do out of classroom work for Maria's teacher, and to conduct Accelerated Reader tests for Veronica's class.  I want to be involved and to assist their teachers, I want us all to be involved in our Catholic School Experience, because I think it's right for us and also because I don't get to have that opportunity with Anthony.  I am TRYING to CARPE the DIEM.

But.  I complained on Facebook about Maria's teacher asking us to have her complete the Math homework in pencil, but not coming across with one of the pencils that we sent in.  It was just a funny thing that Mike and I talked about, and I said it on Facebook, in my Facebook status that only my friends and family see.  People commented and said just buy a pencil, and I said I can!  I would just rather not keep them in my house.  I know that makes me a weirdo.  I KNOW.

The last time I posted on Anthony's blog, I said how happy and grateful I was that he hadn't had any accidents at school.  Yesterday he came off the bus and when I looked at his backpack, there was a note that said that he had an accident in school and we had to send in new backup underwear.  I looked further and found said dirty underwear.  I was telling Mike yesterday, in the big picture, I know that we are right where we are supposed to be.  I know that all of our kids are perfect for us and we are perfect for them.  But on a day to day basis, we are a bunch of weirdos and I know it.  We can't just go to a baseball game, can't just go to our church's big fundraiser this weekend.  I can't just send my oldest child to the school I want, I can't even get his insurance company to do the right thing and pay for him to get the therapy that he needs!  I worry every minute of the day about him and not just the now, but the future.  When he pulls at me, or kicks me, I worry that he is going to some day really hurt me or one of the girls.  It is a constant, constant fear of mine.  I have never been so worried.

So I say this one thing on Facebook about Maria's teacher and how I wish she had sent a pencil home and one of my Facebook friends, who is a teacher, lit into me about it.  She said, sarcastically, yes, Joanne, we all sit around and plot and plan how to make you miserable.  She said, sarcastically again, we don't spend any time planning academics, we just want you to be unhappy.  She asked may I ask you a question?  Did you ask the teacher about this and tell her your situation and see if she could work with you on it?  Honest to God, I felt like I was on Candid Camera.  She said that she didn't appreciate me judging this teacher on Facebook, that she wouldn't appreciate it if she was the teacher.

Holy moly, I still can't believe it.  I mean, I guess I can believe that someone is so constantly on guard about their profession that they are kind of a watchdog about it.  I know that my sister is aware of librarian stuff in the media and on television, and Lord knows I am hyper aware of stay at home mom stuff, or even waitress things!  What I can't get over is that no one will cut me any slack.  I think of hundreds of things a day that I want to say to people, things I disagree with, every single day!  But I don't say them - I think about things that I've read recently about being kind, because you don't know what someone is going through.  I can't get over the things that people say about mothers, or special needs mothers, or servers, or women, or people, and I don't take it personally and attack them!

So I just - if you're tempted to correct me, or make an example of me, I wish you wouldn't.  I tell the kids all the time, I am trying all the time.  I am trying as hard as I can every second of every day.  So I am just asking to cut me some slack, to give me a break, to assume that maybe I am having a bad day and here's a safe bet - if you see me at any point during Anthony's waking hours, I have probably just cleaned up or am about to clean up some poop.  Poop off my NINE year old, poop that I have been cleaning and wiping up and washing out for NINE YEARS.  So cut me a break, people!

Bus

Anthony took the bus home yesterday!  It was extremely nerve wracking but I didn't have too much time to think about it.  He got home about 3:55, the driver introduced himself and introduced the aide, he said he was taking care of Anthony and another little girl.  I think there were two girls on the bus besides Anthony but I was a little crazed so I could be wrong on those numbers.

He wears kind of a harness that clips into his seat and it looks weird but I took it right off and put it in his backpack with no problem.  He seemed very happy, and he seemed taken care of, so what else could I ask, right?  I'M GLAD I ASKED.  I could ask for him to not pull on me or kick my dad or poop out in the yard.

I'm super grateful that he is doing so well at school and hasn't had any accidents or anything but WOW would I appreciate it if he would a) stop pulling at us and b) get it together, toilet wise, at home.  I am just putting it out there in case someone in charge thinks that I don't desperately want these things.

Labor Day

Labor Day ... and I do mean Labor.  Good GOD I find it depressing that everyone I know has so much fun on holidays!  I feel so bad for my kids sometimes, because I am the most miserable cur that ever has been.  One woman I follow on Twitter and Instagram was saying how great her summer was with her four kids and she loves it so much and her Felicity-aged child is, like, SWIMMING and I don't even know.  I am a wreck.  But I think it might be not just me.

So today the girls slept until 7:50.  No wait, let me back up.  Yesterday we were so tired I thought that I was going to die from it.  We finally got the girls in bed and watched The Bridge and were going to sleep around 10:00.  Mike wanted to take a shower because he had grilled out and felt grimy.  I am sometimes so jealous of him because if he wants to take a shower, he just *takes a shower* and then he can just go right to bed.  I always have to think about my dumb hair, do I dry it, do I straighten it, can I braid it, on and on and on.  Anyways, he was in the shower and I was trying to read on my phone but my glasses are broken - both arms are broken off of them so I call them my pince nez and I have to balance them on my nose, ugh it's a joke.  Anyway I was trying to read and Mike was in the shower and the door opened and in Anthony came!  He laid right down on the bed and I was kind of freaking out because his door was locked, ha!  He has found that if he jiggles the lock enough, he can shake it off and that's what he did.  So anyway we put him back to bed and said good night.

Then the girls were up at 7:50 which was great for a sleep-in but bad because I wanted us all to go to Mass at 9:00 this morning and we couldn't.  We hung around this morning and then I said to Mike maybe I will go get us some coffee and Felicity said she wanted a pink donut so I said she could come with me.  She and Anthony are really at odds lately and I thought it would do us good to get out for a while.  I started out but had to go back because I forgot my wallet.  Then I went to Dunkin Donuts (1) where they didn't have any donuts, because she was baking them, but they'd have them in 30 to 45 minutes.  Then I went to another Dunkin Donuts (2) but they didn't have any pink donuts.  Finally at the next Dunkin Donuts (3) they had the donuts but they had no drink carriers and the icing wasn't staying on the donuts, for some reason, the girl said.  Because I'm involved is why they are not sticking, is what I told her.

We got home and I was just home for a little while when Anthony pooped out in the yard, but in his pants so it was a hot mess and I had to clean it up.  As we try to clean him and get him dressed, he grabs at us and laughs maniacally, just in case you weren't upset enough about it.  Later I decided to clean out the toy room and get some stuff together for charity donations and while I was in the toy room, he got a chair and climbed up on the counter so he could get the butter and take a big bite of it.  There was butter everywhere - all over him, the stuff in the cabinet, ugh it was gross.  

While all of this is going on, Maria is bugging me every two minutes about can she go to the neighbors, why aren't the neighbors home and can I text the neighbors to see where they are.  She has some boundary issues, wouldn't you say?  Also she wants to know where we are going for fall break, we could go to Ft. Wayne, or Cincinnati, or downtown, but we have to have a hotel with a big pool.  A big hotel. And a big pool.  And what hotel will that be?  And how big will the pool be?  And where are we going?  Where will we stay?  What are we doing for Fall Break?  Well?  What are we doing?  For fall break?

So in short, I hate Labor Day and holidays and Labor and days.

End of August

Things are going pretty good for Anthony.  I think school is making him tired, he is sleeping really well!  Sometimes he wakes up early, like 4:30 or something, which is terrible but mostly he goes to sleep a little earlier than he used to and sleeps all night, so that's good.  He seems fine about going, his teacher seems very nice and although I am not convinced that he is in the right place, my worries about immediate regression are unfounded so far, and I'm grateful for that.

He is still driving us crazy with Felicity, he gets right in her face and ... well, it sounds silly but he looks at her and that drives her bonkers and she yells and then he gets kind of wound up and it's a vicious cycle.  His respite care worker is beyond great, we all really like her and I think she is okay with all of us and seems to really like Anthony, so... things are pretty good!  What?  Who is writing this?  HA!

Here's a video Anthony's teacher sent me today.  When I look at him sitting there, at a desk, using scissors, it really gets me right where I live.  I'm glad no one was around when I looked at it, because it really made me cry like this BOO HOO HOO HOO HOOOOOOOO!  Ha!

First Week

Well, we are finished with Anthony's first week ever at his new school.  It has been a doozy, but on Friday he had all smiley faces on his communication sheet, his teacher seemed very optimistic about it, so I guess it has ended on an up note.  It also ended with him pooping in the middle of the livingroom rug, but life is not the French Riviera, as I learned in the theme song from It's a Living, so.  What can you do.

This week, on his first day, some lady met us at the door and walked us back.  On Wednesday, Mike walked him in alone.  His teacher thought it would be better if we walked him in the first week, and we complied.  On Thursday, Mike and I bought brought him in, because we had a shitload of supplies to bring too, and we walked them all in.  Every morning, we saw people, said hi, everyone said good morning, etc.  On Friday, Mike walked him in and some old lady who was rude to him earlier in the week* chased him down and made him sign in.  To sign in, you have to type your name, the student's name, the date, and say why you are existing on the earth and in their damned building.  Then you have to TAKE  A PICTURE for your name tag.  So Mike said I've walked him in every morning, I'm just dropping him off, and Grandma Meany McSecretary told him too bad, you have to do it.  She actually said it was FOR THE CHILDREN.  I am so happy I wasn't there.  Mike did it and I emailed the principal and teacher and the principal wrote back that someone SHOULD have stopped us on Tuesday, Wednesday and Thursday but that was on them and in the meantime it is their policy blah blah blah blah blah.  So I said fine, we will drop him off.

*On Monday, when I went in to fill out the medical forms and see the nurse, I thought I was going to get enrollment forms too but no one gave them to me.  On Tuesday when Anthony started, they called Mike to complain that he hadn't left the forms and Mike said, my wife was there for an hour yesterday and no one gave her the forms.  But if you send us home the forms, we'll gladly fill them out.  Then the next day when he was there, the woman said "I'm so sorry that these forms weren't given to you in the long period of time that your wife was here".  Mike said he wasn't sure if she was being shitty or not but to me that just shows that he is VERY optimistic about life and people in general, because that, my friends, is a SHITTY thing to say.  So now I hate that woman.

On Thursday, when we had the supplies and Anthony and a box and his backpack, we were walking from the parking lot to the school and some teacher scolded me about how I should go to the crosswalk to cross because there was a bus coming, which, the bus was NOT coming, what am I, an idiot?  I am trying to get a bolter of a child from the car to the school without him running headlong into a bus, I know alllll about safety, thanks.  This is my problem with these jerkstore teachers (not you - I'm sure you are a great teacher and not a jerkstore) - they want to be in charge of allll the people.  I am forty six years old, and I have a Bachelors and a Masters degree.  I am the mother of four children.  I do not need you to tell me where to cross the street, you dummy.  This is what I want to yell at these ninnies, but I don't.  I just wave and nod and they think I am complying but under my breath, I am saying "fly away, shitbird!".

Mike went to back to school night, he really likes the teacher and I do too.  I don't think Anthony is going to succeed in this program but if he does I think it will be because of loving people like this teacher.  She wanted us to send in shoes that Anthony would keep on his feet!  She made an "!" too, ha ha, to show how much she meant it, maybe?  I have some exclamation points too, I thought.  Like, we have tried many shoes and he won't keep any on!  He threw one out the window last month!  He likes to take his shoe off and bite the ball of his foot!  Because he has tremendous sensory issues and you a-holes will only give him TWENTY MINUTES of occupational therapy a week!  Don't tell me your problems, lady!  Wait until he takes off his pants and poops in the middle of his desk!  Ha, I am cracking myself up here.

Anyway.  That was our first week, it was kind of exhausting living it and I hate to have to relive it and write about it but I want to keep a record, so here it is.

First Day

Well, Anthony had his first day at school today.  It's not his first day ever, because he used to go to public school when we lived downtown and he was in kindergarten, or was kindergarten-aged, but mostly it is his first day.  Mike and I took him together, which is nice, because although either of us could have taken him, I wanted him to know that we were a team on this, and everything.  I don't really know that Anthony would blame ME if he didn't like it or think that I didn't believe in him if just Mike took him, so anyway I am glad we could both go.  We met his program manager in the parking lot, so we all walked in together.  Someone, I'm not sure who, said "is this Anthony?" when we walked in, and came over and high fived him, and asked how our trip was, so I guess she was on the conference call but I have no idea who she was.  She was nice, whoever she was, so I don't care.

We walked to his classroom and met the teacher, she was as cute as ever, but kind of all business too, with Anthony.  She showed him his cubby, and where he should sit.  I mean - where he should SIT!  At a desk!  Mike and I were like, good luck with that!  We said goodbye and beat it, I was feeling kind of nervous that I would start to cry and that is not the image I want to leave with Anthony.  But then we got LOST, totally turned around in that damned school, and then we saw a woman I know from Maria's school, she just started working there, and it was a little hairy.  I mean, we couldn't have gotten too lost, it's basically a big circle, but I felt dumb.

We saw the nurse and gave her his paperwork and then we left.  Mike went to work and I went to the park and lunch with the girls and then at 3:25 I went to get him.  You have to park and go in the media center (library) and I waited and then his teacher brought him.  He looked happy to see me.  She said they had a great morning but the afternoon was crazy, which, um, I could have told her because his therapist was there all morning!  But she seemed very optimistic, so I am going to be, too.

We are going to bring him all week and then maybe next week we'll start dropping him off and maybe the week after that we will have him take the bus home.  It seems like all the bad shit that goes on with kids with autism goes down on the bus but it is going to be impossible for me to get the girls at 3:15 and get him at 3:25 so the bus it is!  He will have an aid on the bus, so I think it will be okay.  We'll see.  I'll be glad when those girls start school, so I can have some time to think.  As it was, I barely had time to worry today, so crazy are they making me.

Update

So here we are, after the denial.  A.D.  Ha!  We went to NYC last week, Mike and I, for our 10th wedding anniversary and we spent part of our visit on a conference call with Anthony's new school to see about him starting.  It's hard - it's hard to not be mad when you are not mad at the people with whom you are speaking, but mad about your situation.  But we talked to the person in charge of special ed, the classroom teacher, Anthony's program manager, Anthony's speech therapist, and the school speech therapist, and we decided that he will start there full time on Tuesday.  We have a meeting there on Monday - we have to go to a medical meeting to talk about the fact that he has epilepsy and might have a seizure, and we probably have to fill out a lot of paperwork.

The woman in charge was really pushing for Anthony to go part time there and part time to Little Star but we shot it down.  I'm not trying to be difficult, really, but we just think that he will do better to start where he's going to be and have the Little Star therapist go there and help him assimilate.  The woman - I don't know what her title is, but she was the person who was at the helm for the meeting said at one point that she had overseen like TWENTY FIVE of these transfers and maybe that impresses someone, but not me or Mike.  I don't care if she's done hundreds and thousands of them, I am only concerned with Anthony.  Finally I asked his program manager what she thought and she backed us up and so we said we could try it our way.  None of it is my way, NONE of it, I wanted to tell her.

She said that they would start out with 20 minutes of occupational therapy a week. TWENTY MINUTES!  I said that I had to be honest and I wasn't trying to be difficult, but that sounded like NOTHING to me and that my guess was that it would have to be upped very shortly after starting.  She said that Anthony should be in third grade and she asked if he would be taking the ISTEP, our standardized test here in Indiana.  I mean - it really made me laugh at first, I said sure, give it a try!  But then I was brought up short, as usual, because she said that because he couldn't take the ISTEP, they couldn't say that he was going to be going for a high school diploma, that instead he was trying for a certificate of completion.  That is what they give to people who have been to school but haven't, like, learned anything.  That always gets me right where I live, it makes it feel so permanent and final - like he will never amount to anything.  And I of course know that is not necessarily true but man, the fact that they have to WRITE IT DOWN when he is NINE years old makes me think no one is really going to be looking for scholarly success from him.

Anyway, I remain grateful that we are getting such great and wonderful support from Little Star.  I know that they are going to miss him too, he's so wonderful and I bet they will really miss him.  I am a little freaked out about transportation - in the beginning we have to take him to school and pick him up and he has to go to school after Maria and Veronica start but before Felicity starts and they have to be picked up at basically the same time.  If he is going to take a bus, the woman told us, he'd have to have a helper, so we can't expect to have it right away, we'd have to give her some time.  Mike said don't worry, we are not ready to put him on a bus yet, which we are not, but we are going to have to do it sometime.  I don't know how else we'll do it, the girls get picked up at 3:15 and he has to be picked up 10 minutes after that and it's 15 or 20 minutes away, at best.  I don't know what we'll do.

In a way, a small way, I am happy that he's going to go to school.  I am proud of him already, I know he'll do okay.  I wish he didn't grab me so much and I wish we would be more like 100% on toilet training but except for those things, I am mostly so proud of him.  I feel bad that I wrote about that letter that we had to write - I wrote that letter and all those things were true, but it's not really how our life is.  We are not miserable all the time, I mean, who is?  It's just when you are asked to describe your life and how HARD it is, it comes out kind of complainy.

Things are going very well with the respite care worker, she seems to like Anthony and he likes her and we like her and all is well with that.  It's good, even.  And maybe it will all go great in school.  I am foolishly hopeful.

Final Appeal

In order to file our final appeal with Anthem, although I guess it wasn't really with Anthem since it was an external appeal, although it kind of was with Anthem, since we had to send it to them so they could send it to the external appeal, we had to write a letter about Anthony's life.  When you write the letter, you are supposed to keep in mind that although you may normally try to look to the positive about your child, you should be open and brutally honest about what life is like with your autistic child.

So I wrote a letter.  I wrote it and Mike edited it, because we think that I am better at emotive writing (vomit, ha!) and Mike is better and legal writing, at facts, etc.  Here is the letter:

Anthony Beck is our firstborn son.  He is nine years old.  He is a happy and smart person, he loves to run and jump and watch The Wiggles.  He loves to be tickled and roughhoused, he loves music and dancing.  He is the oldest of four children, our only boy, and he is the only one with autism.  He had a difficult babyhood, he has always had trouble sleeping, but he is now a very nice nine year old and everyone who comes in contact with him loves him.  

Our hopes and dreams for Anthony are the same as our hopes and dreams for our daughters.  We want him to use the gifts that he's been given to be the best person he can be.  We want him to learn how to live and thrive in the world.  We are willing to do anything to help him achieve his dreams.  

Every day, we wake Anthony up and get him dressed.  If the pull-up that he is slept in is dirty, we clean him up.  Sometimes this requires putting him in the bathtub.  We get Anthony dressed and get him downstairs.  He frequently does not want to get dressed and responds by passive resistance or by kicking us or pulling at our clothes.  On a good day, Anthony will walk downstairs himself, but sometimes I have to carry him on my shoulders.  If Anthony doesn't want to go somewhere, he drops to the floor and I have to pick him up.  Sometimes Anthony grabs me by the shirt and pulls me to the ground.  He requires minimal assistance going to the bathroom, but sometimes he has accidents and sometimes when he has accidents, those accidents require him to be cleaned up, or we have to clean our house or our yard.  We try to get Anthony out once or twice a day on the weekends, but it is challenging because Anthony will if given the opportunity bolt away from us in a store, parking lot, or park.  He is fast and getting faster and catching him is becoming more of a chore as he sometimes refuses to stop when you call out to him.  He requires 100% of either my husband's or my attention.

Anthony's room has barely anything in it; because we are concerned he will climb on or break anything that it is there.  His dresser is in the hallway because he had tipped it over several times in his room and we were afraid it would fall on him.  Anthony tore both the sliding doors off his closet, and we did not attempt to re-hang those because they are heavy and again we were afraid they would fall on him.  We have a hook and eye lock on his door, which we lock every night because otherwise Anthony would wander the house at night exposing himself to all kinds of dangers which he does not even recognize let alone know how to avoid.  He has only a mattress and not a box spring or frame, because if he has anything to make him taller, he will tear at the window, or the ceiling fan, both of which he has broken in the last year.  We have put plexiglass over his windows so he can't get to the glass panes (he put his fist through one of the panes last year), and we have removed his ceiling fan from his room because he was pulling on the blades, and the whole thing was at risk of being pulled from the ceiling.  We can't leave any of the doors in our house open or unlocked.  My husband or I have to check the door every time someone goes in or out to make sure that the door is locked, or Anthony will try it and run out of the door and down the street.  He shows no concept of knowing that the street is dangerous.  Recently, he ran down the street and straight into a neighbor's home.  We never go anywhere with all of our kids, except to church every week and sometimes if it is too noisy or something else bothers Anthony, he will start yelling or grabbing my husband and I and pulling at us, and we all have to leave.  

At this point in Anthony's life, we do not see a way in which he could thrive in a school setting, because his medical needs are too great.  He is incapable of sitting still or being quiet for long periods of time.  I have read with great concern recent news stories which talk about special education teachers taping mittens to children's hands, belting them in chairs, or turning those chairs to lie on the floor, because I could see this happening to Anthony.  It is my greatest fear that something will happen to him because he can get so frustrated and he won't be able to tell us about it.  Because of his inability to sit still, not run away or understand or follow the most basic of rules, Anthony cannot attend religious education at our church, he can't go to the pool with us in the summer, he can't go to bounce house or trampoline places, which he really enjoys, because he can't wait in line, or take turns.  It's not a matter of him not wanting to behave. He literally can't.  

Anthony has been making slow and steady progress with his iPad and communication device but he still can't say his name if you ask him what it is.  He could not cry for help if he needs it. He could not tell us if someone was hurting him.  My husband and I are in tune enough with Anthony that we can tell if he needs something urgently when he is up in his room, but he cannot make his wants or needs clear to someone with whom he is not really familiar.  

Anthony has taken swim lessons for several years, through an adaptive program at our local YMCA.  He is learning how to swim because we are very concerned about the high incidence of water accidents for kids with autism.  Every single teacher he has had has tried to show Anthony how to swim by making the swimming motions and expecting Anthony to imitate them, but that is not how Anthony learns.  It simply does not compute for him to imitate something in the way it does for other kids, since Anthony lacks joint attention.  

At this point in Anthony's life, my husband and I know that a public school setting is not the place for Anthony.  We are deeply concerned that Anthony will regress and lose all the skills that he has acquired at Little Star Center.  As an example of our concern about regression, Anthony had been doing very well with toilet training for over a year, but his toileting regressed in a major way last winter when he was out of Little Star for two weeks for holiday break and one week for weather.  In three weeks, we lost months and months of work on toilet training and we are still working for him to get back to where he was last December.  Because of our experience with Anthony’s regression with toilet training over three weeks, our grave concern is that if Anthony goes to a school environment where he cannot get the therapy he needs, he will regress and lose years of progress.  Anthony is prescribed 40 hours a week of ABA therapy because that is what he needs - in fact, he probably needs more than that, and my husband and I do what we can at home with him on the weekends and off hours.  By Sunday night, we are both exhausted from trying to keep Anthony and our three daughters safe and happy all weekend.  Sometimes all we can hope for is that he is safe.  Anthony can be very destructive, he loves to splash in water and see water splashing, so he will often fill a cup with water and throw it on the floor.  He will spit water on the floor.  He also likes to open our freezer and throw all the ice cubes on the floor.  Sometimes if Anthony is upset, he will grab one of his sisters and pull at them.  This usually results in them crying, and the noise making Anthony even more upset.

Although our hopes and dreams for Anthony include his attending a regular school, and learning to read and write so that he can communicate and expand his world, we know that if he were to go to a school at this point, it would do nothing but harm him.  He has an urgent and medical need for the ABA therapy which he has been prescribed.  

Of course we lost the appeal. A "medical professional" goes over it and decides whether or not Anthem was right in their decision to cut Anthony's hours so that he could take advantage of his free, public education. I am really mad, heartbroken even, but not because owe lost the appeal. We both knew that there was no way that we could win - the system is set up for us to lose. It would be like banging your head against the wall and being SHOCKED and SURPRISED that it hurts, oh look, it's bleeding! Wow! How did that happen? We refused to consider the possibility that the scumbags at Anthem would suddenly grow a heart and see Anthony as a person and not just a number on a large spreadsheet.

But what I am really mad about is that they made us write this letter. It seems so mean, so cruel - write this letter, pour your heart out and say all this terrible stuff about how miserable your son makes your family life and then guess what you'll get? The very services that are helping him will be taken away, so you can have MORE time to be miserable. I don't understand why the extra punch in the gut. I wonder if it ever works - if anyone ever writes such a MOVING and COMPELLING letter that it ever works. I don't think so, and it's not just because I think I wrote such a good letter, although I do think it's good and true. I think it's because it was never going to work, this plan to take his hours away has been in place for years. It's unbelievable to me, how unfair it is and I am miserable about it.

BUT, starting a week from Monday, Anthony is going to start school. He's going to - ride a bus? I guess? And then he'll be in a classroom for autistic kids and there will be one teacher for every five kids or something and ugh I just do not see it going well. Little Star is being really wonderful, beyond wonderful, and they are going to send someone there to ease the transition and then I guess we will decide how we will use the 20 hours a week that Anthem is still going to cover, although God knows how long that will be. We are planning on suing Anthem but we are taking a week or two off from all this. I have never wanted to quit something so badly in my life as I want to quit this job, and I've never had a job that's more important to NOT quit, which I think is some B.S.

Sunday

So today we were in church, I was worried about going.  Mike and I went out last night until like 1:00 (!) and we were tired and grumpy and Anthony has had a pretty crappy and I do mean crappy long weekend.  But it went well, so much better than I thought it would.  Felicity won the Worst Behaved in Church prize, because she wanted to walk up the aisle by herself, she was very bad walking up to communion and just in general she is noisy/bad, but even she wasn't too bad.

This bad thing happened, though.  At one point Felicity went back to the old confessionals, and I walked to the back of the church to keep an eye on her.  I want to see her but I don't want her to see me, because if she sees me she behaves worse, usually.  So I was skulking in the back and this woman I know from Veronica's preschool class walked in.  Her son is Veronica's age, and she has a little, maybe two year old girl and she is super pregnant.  She is also super cute, which I admire, so I was looking at her and admiring her long skirt.  She walked in the aisle two rows behind Anthony and Mike, then her two kids, and then her husband.  I saw him look at Anthony and then gesture to his wife to move into the next section.  She said, silently, why?, and he kind of shook his head toward my boys.  She just shook him off and sat down - well, she didn't sit because we were at a standing point but she made it clear that they were staying there and this grown-ass man put his hands on his hips, like in frustration, like *MARIA* does when she is angry.

Ooh I was steamed!  You know, you are not perfect!, I wanted to yell at him.  Your kids can be jerks just like MY kids can be.  You'll still be able to HEAR him if you move to the next row, you scumbag, so I guess it's maybe just that you don't want to see him.  That's so mean, isn't it?  I'm not crazy, right?  I mean, even if you don't want to sit where the boy with autism can be in your line of vision, maybe it would be smarter and kinder to talk about that shit in the car where I don't have to see you.  So anyway, I went back to my row and I turned around and gave that guy a look that I hope said I Saw You, You Creep and I will Thank You Not to Look at my Sweet Son Like That Ever Again.  Also I hope it said You Look Just Like a Petulant Little Kindergarten Girl When You Put Your Hands on Your Hips Like That.  I have a degree in theater so I am really hoping it all came across, ha!

THEN Anthony was getting a little noisy right before communion so Mike took him outside for a breath of fresh air, not a drop of which was available in that hot box of a church we attend.  Felicity ran up the aisle at that point so I carried her out until she wound down.  Mike and Anthony went in and I was standing right behind the last pew, waiting for Felicity to come in, when the guy's Veronica-aged son started flapping his hands like Anthony was doing!  I mean, he was TWO rows behind them!  I caught the kid's eye and just sort of shook my head at him and he looked SHOCKED and HORRIFIED and then HE cried and his mom comforted him.  I mean, I know I am a bitch but I wanted to flick that kid in the forehead - you're crying?  You get comfort because you were making fun of my son and got caught?  I mean, I am a bitch because he is just a little kid, and it's something my kids would totally do.  Yesterday we were at Lowes and I was trying to find someone to help me, I was with Veronica and Maria, and we saw this Lowes guy on the phone.  I said well, I don't want to bother him, let's find someone else and Veronica said, hey what happened to his arm?  His arm was in fact NOT in his sleeve, but I said, Veronica.  You can't talk about people like that.  So I'm not unaware that little kids can be obnoxious but of course, Veronica didn't pull her arm up through her sleeve and wave it around, she wasn't making FUN of him in the way that this kid was making fun of Anthony.

I didn't turn around to shake their hand when it was time, I was mostly busy shaking the hands of the people in front of me but also I just can't.  It's hard for me to be nice to people I don't like when all they've done is EXIST to piss me off, let alone someone who is actively mean to us.  I don't know - I just feel like - it's CHURCH, aren't we all there for the same reasons?  Is there nowhere where we are safe from judgment and cruelty?  I guess not and THAT is depressing as hell.

Update

We wrote a letter for our final update, they have 45 days to respond.  It's so depressing - this is supposed to be an external appeal, but we have to send it to Anthem and then THEY send it to the external appeal people.  Does that seem sketchy to anyone else?  Whatever, I'm sure we'll lose but we have to try.  If we do lose we are going to sue Anthem, and I'm guessing we'll lose that too but at least it will give us a chance.  The Department of Insurance here in Indiana wrote to us and said that they were sorry but they had done all they could do, which as far as I can tell, was writing to Anthem and saying hey um, Joanne says you have done her son wrong and then Anthem wrote back and said, basically, nuh-uh, and they said oh, sorry, my bad.  Anthem owns the whole state, as far as I can tell, so we are never going to get anything done with just our word, or with the autism mandate.

Anyway.  We are moving along on the medicaid piece, hopefully the respite care company place is identifying staff, to use their words, and we can get someone in place.   We haven't heard anything about the dog but I am still praying that it's soon.  I know that Anthony's dog is out there but that is literally all I know about it.  I mean, I believe that this is going to be a great thing for Anthony, that there is a dog who is a good match for Anthony but I just wish I knew when.  WHEN LORD, WHEN?

We are at a pretty low point right now, with Anthony.  I am just hoping, as usual, that it is the darkness before the dawn and that things will get better soon.  I love him so much and I just have to hope that's enough.

Sometimes

Sometimes I get really mad at Anthony. Not at our situation, but actually at him. We have been writing letters and calling people and trying to get this appeal done and still, still he goes out and poops in the yard. I mean really.

Fathers Day

I asked the kids today what their favorite thing about Mike was and Felicity said, he goes to work.  She always says that, though, so she might just be babbling.  Veronica said I forget and Maria said he is so funny and tells good jokes.  I asked Anthony but he didn't answer but I bet there are so many things that are Anthony's favorite, he couldn't even say them all.

This morning, I wanted to make Fathers Day easy on Mike, he made me breakfast in bed on Mothers' Day and I went to get a pedicure and everything!  So when Veronica came in at 7:11 or whatever the hell early hour it was, I got up with her.  We came downstairs and soon Felicity woke up, and we went to Dunkin Donuts where I got Mike a maple frosted donut and iced coffee.  I was going to make eggs but his eggs are so much better than mine and I can never do anything with Veronica and Felicity on my leg, so I went the donut route.  Anyway, when I got home Mike went up to change clothes and get ready for church and then I heard the bath running and it took me a minute but I was like, um, the only reason Mike would be running the bath in the morning is if Anthony had a poop incident and ugh hoo boy it was a mess.  Mike had our friends over last night to watch the Italy v. England World Cup game and ordered pizza and he said Anthony ate a ton of it and I guess it made him a little sick.  Anyways, the point is, there he is, running a bath for Anthony and taking care of biz as usual.  So probably one of Anthony's favorite things about Mike is his willingness to just roll up his sleeves and take care of any mess he makes.  There are a ton of them, Anthony spills water on the floor just to see what will happen (what happens is it makes a giants mess), he takes tons of pretzels and eats one out of every 20 and the rest have to be cleaned up.  I couldn't count how much stuff he does for Anthony.

Another favorite thing about Mike, I bet, is that he is endlessly patient and it's necessary, because of Anthony's thing lately where he is grabbing or kicking us.  Mike is always, always the one to bathe and dress Anthony so basically every night lately Anthony grabs at or kicks Mike, takes his glasses, laughs maniacally in his face and although it drives us both nuts, Mike just gets the job done.

Another thing Anthony loves about Mike, I'm sure, is that he takes him to swimming every week.  He drives him there and walks him in and then when he is done, he takes him to the locker room and dries him off and gets him dressed and brings him home, mostly getting grabbed or kicked and then comes home and does it ALL OVER AGAIN for the bath!

Mike fights for Anthony, we are both fighting the stupid insurance company but Mike is the one going to the appointments with Social Security, faxing the stuff to Medicaid, writing emails which are better written than the ones that I could write.  Mike and I both have gifts when it comes to writing but my writing is more of the boo hoo hoo variety and Mike's is more of the heretofore of the previous engagement law law law very sincerely yours variety.  His writing talent serves us better here lately than mine does, as you can imagine.

Anthony probably doesn't appreciate this about Mike, but I do - he does everything he does for Anthony and for all of us, and he also, as Felicity pointed out, 'goes to work' every damned day so that we can have somewhere to live, cars to drive, food to eat, everything!  Not only does he go to work every day, but he does it all the while with me complaining about him going to work and leaving me alone with these lunatics, ha!  He is really patient, he is so kind and nice - not just to Anthony or with Anthony but with the three girls and also, probably mostly, with me.  He has had reasons, over the last ten years, I'm sure, to lose his temper with me and to get mad but he never does.  He is the best dad anyone could have and he is the best husband I have ever had (ha ha but seriously), we are all so, so lucky.

Medicaid and the Family Support Services Waiver in Indiana

Here's what we've done since we found out that we were off the waiting list for the Family Support Services Wavier (FSSW), sometime last fall:

• received the letter saying that after five years, we were off the waiting list and we would be receiving the FSSW.  
• looked into what that meant, which was challenging because nobody seemed to know.  Would we get money?  Money in vouchers?  Nothing?  A promise of a new day?  Nobody knows.  We scheduled a meeting for December something and we had to bring Anthony.  
• We went to the meeting and at that meeting, a nice woman asked us if Anthony could say, go into a drugstore and give the clerk a $5 for a candy bar and know how much change to get.  Mike told her that if Anthony wanted a candy bar, and happened to be in a drugstore, he would just grab that thing and chew right through the wrapper if he wanted it and no money would change hands.  What the hell, I remember thinking, can she not see him?  At the end of the meeting, I asked what kind of things the voucher paid for.  I said that we were concerned about Anthony's security and I wondered if the voucher would cover things like window guards for Anthony and she said somewhat huffily that no, they weren't going to pay for us to decorate our house.  Okay then.  
• We had to pick a management company, and on the advice of a friend of mine who was a little bit ahead of us in the process, chose Care Star of Indiana.  We had to set up another meeting, with Anthony, at our house and we did.  We kept Anthony home from Little Star and the case manager sat in the driveway for like fifteen minutes, on the phone, until I finally went out if the meeting was still going to happen.  She said she was sorry, she was on an emergency call blah blah blah excuse excuse.  For the Good of the Meeting, I said no problemo and we pressed on.  She said she would send us a pick list for a respite company, since it seemed like $16,000 of respite was all we could get - the waiver doesn't cover therapeutic swimming, occupational therapy, or transportation like we were hoping it would.  We also hoped that we could maybe try hippotherapy or something else which we couldn't afford but it became clear after our meeting that we should just take the respite and go from there.  You can get a lot of respite or CHIO (Community Based Habilitation - Individual - basically going out to places with a caregiver, the pool, etc.) if you use the whole waiver for it, so we figured it would work out okay.  Lots of times we feel like we can't take Anthony places with everyone, because we can't focus 100% of our attention on him, on Veronica. and Felicity, and they all need it.  Bad math, Mike calls it, and he's right.  Of course we are hoping old Veronica will grow up soon and behave better when we're out but so far, she can't really be trusted to not run out into the road or whatever.  Anyway, we were hopeful (MISTAKE).
• I picked a respite care company and spoke immediately to the Director of Operations, I chose them from the pick list with our Medicaid Case Manager, then .the DoO came out to the house and did an intake, meaning she got our info and said that as soon as she got the go ahead from Care Star, she'd get someone and we'd meet them and go from there.  
• Many weeks went by and finally, Mike started trying to contact our case manager at Care Star, he called her one week and then called her the next week.  Then I emailed the company and then I called her and then finally she called us back.  In the meantime, I emailed the DoO for the respite care company and asked her what our status was and she said she was waiting for the Care Star lady to send her something.  I asked the Care Star lady about it and she said oh yes, hadn't she sent that?  We had to apply for medicaid!  So we did, we called last Thursday and they called back and - this was funny - the lady called me and said that when we filled out the medicaid application, we hadn't checked that Anthony was disabled and he pretty much had to be disabled to receive Medicaid.  I said I'm sure what happened was that we don't think of Anthony as being *disabled* but that I guessed we should rearrange our thinking for the purposes of our application and the lady said YES we should, ha ha boo hoo.  Anyway, they scheduled an interview this morning at 9:00.  
• Since I had Veronica and Felicity here and we were starting some home therapy for Anthony at 9:00 this morning, I asked Mike if he would do the interview and he said sure so he talked to the guy.  There was some major confusion because, as Mike said, it's still 1954 at the Medicaid office and they didn't understand why my name was different than all of theirs.  The dude asked Mike what was my name on Anthony's birth certificate and Mike said it was the same as it is now, sheesh.  The guy had to call back because he checked the FSSA database and Anthony's waiver letter wasn't in there.  Apparently our case manager at Care Star was supposed to do that, too, but guess what?  SHE DIDN'T!  So I called her and the guy called back this afternoon and asked the same questions he asked Mike this morning.  He asked what Anthony's doctor's name was, what his address was and his phone number, and THEN he looked him up in the database and there he was!  He couldn't have looked that up first?  He asked what grade Anthony was in and I said, um, he's not really.  At the same time I was answering him I was checking my email and I got the info about Maria's kindergarten graduation and ugh I could do without stupid questions, buddy.  He asked if Anthony could dress and bathe himself and I said, thinking it was best to keep it short, "no" and he said, and you said he has no physical limitations?  What I don't like about these people is that they make it sound like he is the WORST CASE they have ever heard of!  Would you say he has severe autism, he asked me.  I said yes, and he's non verbal too AND low functioning, put that down, they love to see that.  I mean really.  
• SO now the guy is going to mail me (email, I asked? NO, he replied, reminding me that it really is 1954 up in there, the USPS!) a privacy letter I'm to send to Anthony's doctor, and I have to send a copy of his birth certificate (with my big red A last name on it) and I have to find out why the dimwit case manager hasn't filed the waiver letter, AND we have to apply for Social Security Disability AND SSI and then we can really get going on it which of course means thirty days more of waiting.  

It's so, so disheartening.  I also talked to the Department of Insurance today and Mike talked to our state rep's aide and she said that the guy that she called said that he is really backed up because so many people are calling about this problem.  Really?  Parents are calling because their kids' insurance is being taken away?  HOW SHOCKING!