Thursday, September 18, 2014

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.


Wednesday, September 17, 2014

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**
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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!  

Friday, September 12, 2014

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!


Thursday, September 04, 2014

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!


Wednesday, September 03, 2014

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.

Monday, September 01, 2014

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.

Wednesday, August 27, 2014

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!

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