Monday, March 02, 2015

Day 8 of Lent

Fun fact:  when I was writing the last entry on this blog, Anthony came in and spit water right at my head!  I couldn't think of a way to turn that into a good thing, in fact I was CRYING I was so frustrated, so I didn't mention it last time.  Now I am thinking that him spitting water at me was inventive (he wanted to express his extreme displeasure to me and he did), shows sticktoitivness, (he had to drink in the kitchen and keep the water in his mouth all the way to the livingroom where I was sitting) and his fun loving nature (spit take!).  It's kind of a reach, but I am willing to stretch myself, for Lent.  :)

He started back at Little Star full time today, it is a major relief.  I feel like we have lost a lot of ground in the last six months so I am looking forward to some catching up!  I pray he gets back on track with regard to toilet training, and also not pushing us around so much, and I really hope he and Felicity can get along.

Yesterday he was eating Thin Mints, which he really likes, and Maria asked for one.  He took a small bite of the one he was eating and then gave it to her and she said, smiling, "well I didn't want a BITTEN one, but I will take it".  He gives us anything and we take it as such a gift!  That is his gift.

Sunday, February 22, 2015

Day 4 of Lent

What's So Great About Anthony?

This is hard to do on a Sunday because it's such a crappy day for Anthony.  Oh well, let's think:


  • He's predictable, ha!  
  • He's adorable.
  • He's guileless and sweet and doesn't have a mean bone in his body. 
  • He's so smart and hardworking.  He is headed back full time to Little Star next Monday and I can't wait.  I know he will catch right up.
  • He's a good sleeper.  I know I shouldn't say that, to not jinx it, but I really do appreciate it.  We had some hard years of not sleeping so I want to recognize that it all goes pretty well now.  

Monday, February 09, 2015

Happy Thoughts

I had a thought tonight, it came out of nowhere.  Anthony has been driving us a little bananas, the weekends are SO HARD and I worked all day Saturday and all night and then all day Sunday and came home at like 2:00 in the afternoon and then even though it was six hours until bedtime it felt like four hundred and we had a visit from Laura and everything!  He and Felicity are always at odds, mortal enemies, and it's so, so wearing.

So maybe that's why I was thinking tonight what a gift he is, too all of us.  Anthony's teacher at school became a special education teacher because her brother has (I think) Down Syndrome and Anthony's program manager studied ABA therapy because her cousin (I think) has autism.  Anthony's first program manager got into ABA and became (I think) the youngest recipient of a Masters in ABA in Indiana because her brother had autism.  I think they are all wonderful people and they care a lot, a LOT about Anthony and the other kids with whom they work.  But are they just wonderful people and that's why they went into Special Ed and ABA?  I wonder.  I wonder if it's because they were raised around people whom they loved and whom the rest of their family loved and that's why they see some benefit to working with these kids.

Maria is pretty good with Anthony, she is super patient and she is kind and she wants him to be happy.  She tries to help when she can and she is (mostly) happy to play chase with him.  Veronica is too, but as with everything she doesn't really do it as hard or as loudly as Maria does.  Felicity, of course, and Anthony are not really at a point yet where they can get along but as Mike pointed out, in many ways, Anthony is just behaving like a typical big brother with her.  He knows that if he screams in her face, it will drive her bananas and he will get a giant reaction of her, and he laughs and laughs when he gets it.

But anyway, tonight I was thinking the onus is really on Mike and me to not just love Anthony, but obnoxiously love him, to love him out loud, so that the girls are brought up with the feeling that we are lucky to have him live in our house.  I mean, I feel like we ARE lucky to have him in our family and we DO obnoxiously love him, but I'm glad I thought of those women in Anthony's life tonight, women who were raised seeing people with developmental disabilities as being worth devoting your life to.  I don't hope that my girls go into special education or ABA therapy necessarily, but I hope that they will be empathetic and kind and see the value in people who happen to think differently or who are maybe kind of loud or whatever.


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!