Wednesday, December 10, 2014

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.

Monday, November 24, 2014

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 Peter 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!

Sunday, November 02, 2014


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!

Tuesday, October 21, 2014

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?

Sunday, October 05, 2014

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!

Monday, September 22, 2014


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!

Thursday, September 18, 2014


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.