Tuesday, January 20, 2015

Tuesday

Anthony went to Little Star yesterday, which is a good thing, since the girls were home because of MLK day AND they all are in some stage of strep throat, so it was especially rough.  He was up super late last night and maybe that's why but he was crazeballs this morning.  I always pray that he gets to school safe because it's so WRETCHED right before he leaves.  I don't know if he doesn't want to go, or if he DOES want to go, but either way he is wound up so tightly that he can barely get out of the door.  He wants to drop to the ground, not put his shoes on, kick me when he is putting his shoes on, pull my hair when I am putting him in his seat, get right OUT of his seat, all the while laughing maniacally.

He had a good weekend, and he's been doing really well with potty training - I mean, he's had problems here and there but overall it's been good.  Somehow I think that his accidents are related to having a seizure, he seems to be really bad after having one for a few weeks.  On Friday he went to a bounce place with Christina, Saturday they had a great time, she said, at the drumming place and then they ate at Panera and because it was warm out they got to go to the canal.  It's just the weeks that seem problematic, the time that he spends with us.

We have been doing respite care for almost six months now and in many ways it's so good and in some ways it's kind of not that good.  I think Christina is great and I think Anthony thinks that too but I feel bad because I feel like we are getting in the habit of being happy when Anthony is with Christina and sad and tense when he is here.  I feel like my only interactions with him are him kicking me or pulling my hair and me getting so mad, despite my best intentions.  I pray every day that I have enough patience to not just deal with these people, but love them, to be a loving and good mother and every day, several times a day, I fail spectacularly.  Someone is always sick and someone is always crying and whining at me and then when someone else kicks me or splashes every bit of water in the tub all over the bathroom, I just can't take it.  I mean, obviously I can but it's awful to be so on edge.

Yesterday on Facebook, a friend of mine was humble-bragging about how happy his infant daughter is.  A friend of his told him that "they're mirrors", meaning kids only reflect back what they see in their parents and I thought well, crap.  This is a thought I have a lot about parenthood, well, crap.  I try and think, have I been miserable from the beginning and that causes him to be miserable?  I mean, I was pretty miserable but I don't think it was - I mean, I don't think anyone would say about me "boy that Joanne is a misery!", prior to having someone screaming in my face all day.  I don't know.  I just want to be happier, and I want Anthony to be happy or if not HAPPY then just not screaming and crying.  Not kicking me.  Christina gives him his medicine and she walks up to him and he opens his mouth and takes it.  This morning, Mike tried to give him his medicine and he reared back and was kicking and I had to hold his hands and then he just opens his mouth at some point and takes it but like Mike always says to him, why do we have to go through all this every time if you are just going to take it anyway?  Then I feel like it sets kind of a crazy tone for the rest of the morning, with lots of laughing and kicking and yelling.  I don't know what to do but I would like to know.

Anyways I have to go because Veronica is home sick and I have to play Chess with her.  PS neither of us know how to play.

Thursday, January 15, 2015

Thursday

We had a rough morning this morning with Anthony, part of which resulted in me saying "asshole!" and slamming the door of the car.  In my defense, he had just pulled the heck out of my hair while I was trying to put him in his seatbelt.  I finally got him to the car by carrying him on my back, and I got him on my back from a squatting position, which - ouch!  I might skip my workout today.

Mike said he was fine when he woke up (I was taking the girls to school) but that he didn't want to take his medicine, which happens sometimes.  He has been sick, he had a fever Sunday and Monday, and then a rash, but he seems better now.  So why is he being so bad?

Mike said the ride to Little Star wasn't any better, that he was grabbing at him and kicking him while he was driving.  Our neighborhood is so, so icy, it's literally like a skating rink through most of our street, I have spun out several times, so I can't imagine it was easy to deal with that and Anthony.  Then Mike said he was crying a lot, jumping around and crawling up into the back window of the car.  He's been getting out of his seat for a while and it's a nightmare because usually the girls are freaking out and yelling and then it gets really nutty.  I have been just trying to focus on getting the hell home but I am going to have to come up with a better plan.

I was thinking this morning, I am not feeling sorry for myself but holy shit, there is no one who can advise us about this?  I recently started a new job, in late November, and on Friday I got a note from the state, asking me to verify my income because we get Medicaid.  Lucky for me, I have a friend who works in Communications for the State so I was able to get it straightened out pretty quickly but look - we were on the waiting list for the waiver for FIVE YEARS, I spoke to a woman the other day who was on it for TEN YEARS.  Then after we got off the list, it took ten months to get actual services but I get a new PART TIME, WAITRESSING job and those state agencies are on me like flies on shit?  Whatever.  Imagine if the state government was as fast helping people as they are finding out that they are cheating the system!

We are supposed to take Anthony to have blood drawn since we have upped his medicine.  We can just take him to a lab, and there is a hospital near our house so we are planning on taking him there but man.  Do I have to call ahead?  Is there going to be someone who can do it there?  Will they refuse us treatment?  NOBODY has told us anything, his pediatric neurologist just says, go do this, and do it before his first dose of medicine, which is first thing in the morning, which is when our other children also have to be taken care of.  SHEESH.

I am trying to get all my ducks in a row so we can have a meeting at his school, addressing the fact that he was allowed to run out of the gym and then OUT OF THE SCHOOL.  I want them to provide a one-on-one aide to Anthony but I am assuming they won't, because they never do anything I think they should do.  Then what?  Do I have to hire an attorney?  Where do I get the money for that?

Those logistics will just get taken care of, though.  We will get the blood drawn and no one is accusing me of rooking Medicaid anymore, but man, I wish I could figure out why he doesn't want to go to school when he doesn't want to go.  Why does he cry so much in the car?  I read an article the other day, this one, and - well, it's about how sometimes when people say that autistic people are getting bigger and more violent it's just that they are unhappy with the therapy they are getting.  So I started to worry that maybe Anthony hates ABA therapy, maybe he hates his classroom, maybe he hates OT, maybe he hates swimming!  Maybe maybe maybe maybe but here's what would be helpful - if he had these behaviors AT any of those therapies.  Then I thought, maybe he hates being HERE, hates being with us, and that is a little trickier.  Anyway.  That's what is happening here this morning.  Tonight, Christina is coming over, he has swimming, and hopefully things will start to look up.  This weekend it's supposed to be 42 degrees, which sounds like 100 to me after the last few weeks, so I'm sure things will get better.  Or at least not worse!


Monday, January 12, 2015

Monday

We are having a Monday and a Half around here!  Yesterday was terrible, of course, being Sunday and us and all.  It was also Maria's birthday, but thank God we had a party for her on Saturday because it was pretty rotten yesterday.  Mike went to Mass early and I took the three girls to 10:30 and then to donuts and coffee afterward, which was nice.  Then I took Maria to Steak and Shake for her birthday, met my sister there and then we went home, not until around 1:30.  But then somehow it was like twenty five hours until 7:30 and bedtime.  Anthony was pretty bad, kicking and screaming and at one point scratching the heck out of my throat.  Then right before bedtime he came and laid on me and he felt warm and I took his temperature and it was almost 101, so I figured maybe he was extra badly behaved because he didn't feel good.

It must be terrible, I know.  I mean, I can't imagine what it's like to not feel good and not be able to say it.  To hear Maria and Veronica go on and on and ON and even Felicity, to get their needs met when they have one hair out of place must be rotten.  But it is also rotten to know that it's going on and not be able to do one thing about it and to not have any help figuring it out.

Anyway, he went right to sleep last night and Mike and I were afraid he was going to be up super early but he wasn't.  He is still warm but seemed fine this morning so we were thinking of giving him some Tylenol and sending him off to school after their two hour delay, but the school made it easier for us to make the final decision because they ended up closing.  I'm sure they didn't want to take anymore days off because last week they were closed for two days because it was cold out.  Just cold, no snow, no ice, no rain or dark of night, just - it was too cold for kids to stand at the bus stop!  I was complaining about it last week and saying that I thought this made them wussies, as they don't go to school outside and a friend of mine LIT INTO ME.  She told me that I wasn't thinking of all my advantages, that I should kiss my kids instead of bitching, and that I clearly wasn't thinking of the kids whose parents didn't even have cars!  I don't even know what to say about it, I mean, it feels pretty bad here when Anthony can't go to school.  I don't know if I would trade it for a CAR or anything but I hardly think that's the point.  The point, to me, is that it seems like we should be able to stand waiting for a bus for ten minutes in order to get in a whole day at school.  School has become this throw-away thing that we do, like if conditions are absolutely perfect, we can go but otherwise it's a no go!  A friend of mine told me about a friend of hers who kept her son at home even though they had school because it was so bad out.  I don't even understand that.  The girls, thank God, have had school every day and Anthony was able to go to Little Star last week so it went okay.  Today is a different story, though, with him being sick and with the weather.  Felicity is at preschool so at least they are not home together.  They are complete archenemies and I hope it gets better soon.

What else.  Anthony ran out of school last week.  I guess it was Friday, they called me but I didn't get the message so they called Mike and told him the details.  I guess Anthony was in the gym and somehow he ran out of the gym and then OUT OF THE BUILDING.  I don't know how far he got or anything but I do know that he was running in the snow long enough that his feet got super wet.  At first they told Mike that their plans for improving the situation and not letting something like this happen again included making a social plan and telling Anthony that he can't do that, which, UM, does NOT WORK!  Then the principal stepped in the conversation and said that they would have someone stationed at the door to stop him.  Upon thinking about it further, I think it's unacceptable.  I am going to schedule a meeting with his teacher and principal and anyone I have to to figure out if he can get a one on one aide so that we can be sure it doesn't happen again.  I mean, I can't even get over it that it DID happen.  He could have easily been HIT by a CAR, I can't even stand to think about it.

It is a difficult situation, to say the least.  I feel like we are just waiting and waiting for everything.  I feel like getting a dog for Anthony at this point could be life changing, but we can't get the dog, we are still on the waiting list.  I think, should I be figuring out some other organization to work with?  We are two years in, almost, with this one, so I guess we should just wait.  I want to have faith that we will get the dog when we are supposed to, but why aren't we supposed to now?  If it's going to make our lives so much better, why can't they be better, when they are so rotten now?  I don't understand it.  I was telling my sister the other day, I feel like we've never needed help more and there has never been less help available to us.  I feel completely abandoned, and it is a crappy way to feel!  I mean, I know it's unpleasant, our lives are pretty unpleasant but man.  I have never felt more alone or out of resources.

Um, but on a pleasant note, um, let me think.  Spring is coming?  Felicity is only getting older so she will be able to not be so freaked out/pushed down by Anthony?  Maybe things will get better, in fact, I would say that they can't get worse but I don't want to jinx anything.


Monday, December 29, 2014

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!

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 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!



Sunday, November 02, 2014

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!