Wednesday, December 02, 2015


I am just sitting around because I have off today and I don't feel that good so I figued I'd update some blogs.  Anthony is doing okay, except he hurt his toe and I had to take him to the ER.  It was two weeks ago today, I stayed at the girls' school for a few minutes after I dropped them off so I didn't see Mike and Anthony before they left.  Mike called and said that Anthony's big toe was really bothering him and it looked horrible, then when I went to pick him up, his toenail looked sort of lifted (ugh) off his toe and his therapist John said he had mostly stayed in the cube all day.  So I was driving home, I had a  babysitter for Felicity so I asked if she could stay later and she said she could so I took him the ER.  I was worried that something was broken or infected.  He did pretty well at the ER, although all they did was take a few xrays and determine nothing was broken.  They couldn't get a bandage on it, but they did get some Bacetracin on it and assured me nothing was going to get infected, so that was good.  But he missed OT because we were there for 90 minutes for basically one minute of seeing a doctor, five minutes with a nurse, and maybe seven minutes with the xray.  Whatever.  Once the toenail feel off, it was better (ugh) but now he has messed up the other one!  I guess he is kicking his door?  So I am going to figure out a way to put some kind of cushion on the back of his door.  It is always something, I wish I were more creative or handy.  Here's some pictures:

Thursday, November 12, 2015

Pictures and Catchup

Anthony is doing well, all things considered.  He is swimming on Thursday, going to OT on Wednesday.  He likes his OT a lot, she is really into music and really gets him.  She, like everyone else in our lives, really likes him.  That is a real gift, how likable he is.  And when he likes you, he'll do anything for you! Sometimes that would make me think that he doesn't like us, but it doesn't work like that, with any of our kids.  Here's some pictures!

Here's a rare picture of all four, plus the dog, plus my new vacuum!
Anthony went as Sheldon from the Big Bang Theory for Halloween.  Mike thought of it, it was brilliant!
Some of Anthony's favorite things these days are his iPad, Spotify and his playlist, and the dog.

I don't have a ton of pictures of him, he is always on the move and I am always trying to be ready for anything, ha!

Monday, September 28, 2015


It's so surprising to me how painful it's been to be in a school full of kids, some of who are Anthony's age.  Some of them are named Anthony!  I was talking to one of my classes about the year they were born and some of them said 2005, some 2006, and I thought really?  They seem so ... not grown up, but advanced, ahead of Anthony.  Because Anthony is our only boy, I guess there are just things we are not going to experience.  The boys in fourth grade seem so different than the girls.  In some ways, they are the same but Anthony has never really had that boyishness that I see in other boys his age, not for a long time anyway.

I have been volunteering for recess at the girls' school and the other day I was watching the fourth grade boys play football.  You have to watch them closely or they might fight, it's so physical.  So I was over there a lot and there was one kid named Anthony and apparently he always had the damned ball because everyone kept yelling Anthony!  Anthony, right here!  Anthony!  Way to go, Anthony!  My eyes filled with tears and I thought, great they are going to kick me out for being the crying mom volunteer, but it was very moving to me.

Things have been hard lately, largely because a) the damned new insurance company is denying us and we had to pay a doctor (like a PhD doctor) $250 smackeroos to write a report about Anthony, to prove that it's medically necessary that he get ABA treatment.  For you English students out there, I think this might be a good example of irony - Anthony has a PRESCRIPTION for 40 hours of ABA therapy a week from a MEDICAL DOCTOR but we have to get a REPORT from a PhD to say that he needs it.  Whatever.

Also, he is being kind of pushy lately and he is spitting water out of his mouth, which - there is no way to shine that up, is there?  It sucks and he does it to everyone, us, Maria (Ankony!, she yells!), he did it to Laura last week when she was babysitting (probably for the last time, ha ha boo hoo).  It's awful and so VIVID, you know.

I mean, it's just been hard lately.  We are so worried all the time, about money and about the future and getting water SPAT in your ding dang EYE, it's just exhausting.  Even though most of the time I feel okay, I know we are going to be okay, I loved the Pope's visit and to see him with all those disabled children made me be reminded of the fact that Anthony is whole in God's eyes but even still, knowing all that, it kills me that he will never run on that parking lot, never play kickball with those other kids.

Anyway.  I don't know how to wrap it up, ever, when I go on and on.  Here's to hoping either things get better or I toughen up!

Saturday, August 22, 2015

Music and Dogs

Anthony has been listening to music via Spotify on his iPad.  His team at school has been working with him getting his headphones, going to the Spotify app on his iPad, and choosing his playlist.  Yesterday was the first day we listened to music on the way home, I mean, he listened to it on his headphones, and he seemed to like it.  We always listen to music, classic and guitar-driven rock, super loud, on the way home, but he gets frustrated when there are too many commercials.  There are always too many commercials, ha!  He's doing really well with it, and I think it might be great if he could bring his iPad and headphones to church so we could all go.

Things continue to be good with our dog.  Anthony and she both seem to be settling in.  Mike noticed yesterday that she eats all her food when you give it to her.  Previously she just would eat a tiny bit and leave a bunch of it, and Mike says that shows that she's getting used to living here.  Anthony is getting used to her too, he's not as surprised when he sees her for the first time in the day.  Mike saw him sitting on the couch with her the other day, just laying his arm on her body, which is so sweet.  We have been trying to teach him to pet her instead of waving his fingers in front of her face, and we are having limited success, which I'll take.

Mostly I feel like things are going good.  We had an upsetting experience with Anthony's new pediatric neurologist but we are getting a new one.  This dude WAS the new one, so it's a pain but honestly.  We have to be able to find a neurologist who isn't a complete jerk, right?  This most recent guy had us take Anthony for an MRI, and he had to be sedated and he missed the whole morning at school.  Then the doctor's assistant called and said that his MRI was 'abnormal' but not 'dangerous' but the doctor wanted to meet with me and Mike to talk about it.  We made an appointment for the next week and went in but the woman in the office asked where Anthony was and said the doctor wouldn't see us unless we brought Anthony.  They really expected that we'd say oh, okay, and we'd leave and make another appointment for when we could bring Anthony!  I asked to see the assistant, I still had the voice mail on my phone where she said for ME and MIKE to come in and never mentioned Anthony.  This woman who came out, good Lord.  She was SUCH a jerk, she came out arms folded, chin up, churlish and childish and awful.  She said it was THEIR POLICY that the patient had to be there and I said well honey, you should have told me that because now I'm not leaving until I see that doctor and he tells me about the MRI of my son's BRAIN.  Ugh, so then the doctor came out, and shook my hand, the creep, his handshake was just like you'd expect, all warm and weak.  Anyways, he said that there were signs of perhaps a loss of oxygen at birth and that there was some grey matter which should be outside the brain was inside the brain and that's why he has epilepsy.  I said so it doesn't have anything to do with the fact that he has autism and he said nope, pure coincidence.

This seems like BS to me.  I know people who have had a loss of oxygen at birth and a lot of times they have - well like, a friend of mine's son has cerebral palsy, and autism.  I have another friend whose sister had a loss of oxygen at birth and she has cerebral palsy and intellectual development disorders.  I mean, I know Anthony has autism, obviously, but he has never presented as having intellectual disorders.  He is really smart, he was a smart baby and he is a smart ten year old.  Also, it just seems so crazy to me that he just happens to have epilepsy when he has autism too.  Like, a lot of kids with autism have epilepsy and half of those kids are non verbal.  All this plus the fact that we know like 1/1000 of what there is to know about the brain leads me to believe this is bs.  But we are getting a new neurologist and I guess we'll figure it out.

Here's a cute picture:

Monday, August 10, 2015


So we had a new dog come over yesterday and I guess she is going to be our new dog.  I think the woman from the rescue place is bringing her over on Wednesday night and I am taking her to be spayed on Friday morning.  It's so strange that they are just giving us a dog, I feel like when I have a baby and we leave the hospital.  I think, surely there are more tests than this?  You're not just going to trust us?

Anyway, her name is Maggie and she is much more of a puppy than I would have thought I'd like.  But we weren't having any luck with older dogs and I don't really want to get an older dog who is going to die in just a few years, I think that would be upsetting.

Anthony took a LONG time to warm up, honestly, he was freaking out, stranger than he's ever been with a dog before.  Mike and I were fighting the urge to be despondent about it, the girls were really excited and adorable, Maria especially, but it was SUPER annoying because they wouldn't stay away when we were trying to inch Anthony in near her.  Finally he petted her but - I mean, I felt like he was a little kooky with her, waggling his fingers near her face and sort of yelling.  He was really excited!

Oh I hope it works out.  I hope that some damned thing works out for us some time.

Thursday, July 23, 2015

Victory in our Time

Last night I was driving Anthony to OT, the traffic is horrible.  They have been doing construction on this route forever, months and months.  It's so frustrating and I am just grateful that we only do it once a week.  Anyway, I was sitting in traffic and Anthony started grabbing at my shoulder, pushing at me.  I offered him my water and he pushed that away, so I got his iPad out of his bag and gave it to him and right away he said "I need to go to the bathroom".  I said okay, give me a second, and I got out of my far left lane of traffic and shot over to the right so I could get to the next light and then to the NEXT light and then park at a Hardees, where we ran in and got into the bathroom where he peed for two minutes straight!  I was super excited and kept telling him, great job, Anthony!  So we were leaving and he pulled me over to the counter where I bought him a Sprite.

It was so, so great.  First, he used his iPad to tell me something, THEN he held it until we got to the bathroom and THEN he knew that he deserved a reward AND where it was.  We had never been there before but of course he's been to fast food restaurants before and knows where everything is.

Then he went to OT and worked with his new therapist, who he really seems to like and who seems to love him.  It was a really great and sweet victory.

Friday, July 10, 2015


Christina went on vacation last week and we all missed her, but she's back this week.  She and Anthony went to a park on Monday night and she sent us this picture:
He loves to climb all the way to the top of whatever it is, a rock wall, whatever.  He is doing okay, I guess, although he gets really mad sometimes.  He was screaming and crying the night before last so much, and so late, that I thought he'd never calm down.  I don't know why he gets the way he does.  When it happens I feel like I don't know anything.

He is doing really well at Little Star, he worked with Pam, one of his long time therapists, this week and he did great.  She told me yesterday he made 56 unprompted requests from her in just one afternoon.  So it's pretty normal, he is doing very well at Little Star and just all right here.  I can't be engaged with him every second of every day, particularly because Felicity is being SUCH A JERK lately and they are arch enemies and we spend most of our time just picking stuff up off the floor, wiping up water that he's spilled, or pulling them off each other.  It's pretty miserable, now that I think about it.  I guess we should just look at the picture.

Wednesday, May 27, 2015


How is Anthony's epilepsy, you might be wondering?  It's fine.  He hasn't had a seizure in several months, but I don't want to start talking about it too much or I'm afraid I'll jinx it.  He's taking his medicine so well, twice a day, and he seems fine, and no seizures, soooo, I'll take it!

He is doing well in school and he is doing OKAY with toilet training.  I can't believe I've been talking about it for like four years but in fairness, that is not as long as I didn't do training for him, sooo we are probably not yet even.

My biggest problem with Anthony lately is that I feel like I am always yelling at him, when I talk to him, and I don't see him that much.  My wrist has been broken/getting better for like eight or nine weeks and I started avoiding him in the beginning because I was afraid he'd hurt me and now, between that and the fact that he spends three nights/days with Christina, there's just not that much time.  We are making a concerted effort to spend more time with him and to do stuff as a family, and I hope it gets better.  This wrist has messed me up.

He has this super nice afternoon therapist, his name is John.  He's so good with Anthony, I mean, they all are but I love to see Anthony with a guy.  When Mike and he are together, or when he is with a male therapist, I feel like he seems like a guy's guy, and when he's with his sisters, he seems so annoyed, which anybody would be, but anyways.  He's a good addition to Anthony's team.  Also, his old therapist Sarah is back, who we all loved, and I'm sure he's thrilled.

He's going to be ten on the tenth of next month.  TEN.  Sometimes when I am listening to him yodel away, or when he is sitting on my lap, I think of the little baby he was.  I have never spent that much time with anyone in my LIFE and I will never forget it.  I think that's why it doesn't go fast for me, I feel every second I spent with him.  I feel like I remember every day.  I used to get mad about that but now it makes me so happy, that I can think back to when it was just the two of us.  And my floors were so clean because I vacuumed so much.  Ha!  Anthony Beck, keeping me vacuuming since 2005.

Thursday, April 30, 2015


I always read these things about how you should tell your child they have autism and I always think pssssh I don't have to do that.  I don't know why I always poo poo it in my mind.  But today I was driving Anthony home and Felicity was sleeping and I told him he has autism and that's why it's hard for him to communicate, among other things.  I told him that he was our only kid who had it but that it didn't mean he wasn't as smart, as great, or as loved as the girls, it just meant we had to do some different stuff with him.  I said that's why he went to Little Star and that Mike and I would take care of everything he needs.  I cried quite a bit talking to him but I was wearing my sunglasses so I don't think he knew.  I'm glad I did it.

Wednesday, April 29, 2015

Occupational Therapy

Last night I was sitting outside Anthony's OT appointment and I could hear it wasn't going well.  "Leave my glasses alone", she was saying and, "ouch! That hurts me!", ugh.  She moved a table and two chairs out of the room that I guess he was climbing on.  I waited until he settled down and then I went out for a walk and when I came back and he finished, the OT and I were talking about why he is so riled up at the beginning of every session.

She said she has other non-verbal kids but none with the cognizance that Anthony has.  I know most mothers would think this but I really think it's true.  He is so smart, and he has all the words, he understands everything, he just can't say it.  She said once she got him some water and a snack he really settled down.  She said she thinks he is thirstier than she thinks he is, and I agree.  I think about how much the girls ask for water, it is ALL they do some days, it seems like.  If Anthony were thirsty half that much, that would still be pretty thirsty!  So we decided I'll bring water and a snack to OT from now on and we'll see if that helps.

I worry so much that he is scared, that he needs something and can't get it.  I'm hopeful that now that he is back full time at Little Star that we can keep working on his communication so he can use his iPad to communicate more needs, maybe even feelings.  Here's to hoping!

Friday, April 03, 2015

Day 26

I am not going to make 40 days, I broke my stupid wrist in Florida and can't type.  But A is doing very well, he is getting back on track with many things, toilet training, therapy, everything.  I missed him when I went to FL, but now that I'm back with my big stupid cast, I have to avoid him so he doesn't hit me.  But he's doing well overall and I'm mostly really grateful that he's back at Little Star full time.  Happy Easter!

Tuesday, March 17, 2015

Day 21 of Lent

This is hardest with Anthony, I'm finding, to do my positive things for every day of Lent, because we are going through such a hard time with him right now!  There have been many times over the last ten years that we have had such dark times and then something got better, and I'm hoping that's the case now.  Yesterday the lady from the dog place called and left a message and of course I have called back four times today and she's not in yet.  I wonder what she's going to tell us.  Will she say that they have a dog for us?  If she does, that means a lot of work.  It means that we will have to go for two weeks of full time training, it means a lot of work for us and if our last visit was any indication, it means that we will be covered in dog hair for the rest of our lives, ha!  I am worried about a lot of things but I am never worried that Anthony isn't up to the challenge, that he isn't smart enough or tenacious enough to make this work.

Last night he was being so rough with me, really pushing me around and I asked Mike to just take him up to bed, I was so over it.  I hate being mad at him but it's so, so challenging at the end of the day when everyone ELSE is being bad too.  Anthony was super tired, he woke up at 3:30 Sunday morning and stayed up until like 11:00 that night, which must have been so hard on him, so I'm guessing he was tired.  He went to bed pretty early last night and Mike and I were worried that he'd wake up super early again but he just had a good night's rest, which is a big relief.  But anyway last night he was being just awful and I think maybe he wanted to go to bed, so he was badly behaved so that he'd have to go.

Anyway, my point is that I am not worried that Anthony won't do whatever it takes to feel better and to be happier, I know he can do it.  I hope that Mike and I are up to the task!

Wednesday, March 11, 2015

Day 17 of Lent

Anthony is getting so big, it's crazy to me.  I look at pictures of him when he was, like, five, and I think what a big boy he looked like then and man, he was not!  He was a little baby!  He is going to be ten in June.  TEN.  He is big and strong and he's been eating some things now that he long ago gave up, like cheese sticks.  He also hasn't had a seizure in quite a while (I am knocking wood).  He's having a good week, I think we are all happier that the weather is getting better.  I always think about this shirt that he used to wear when he was little that said "I am Strong and Brave" and he really is both.

Monday, March 09, 2015

Day 12 of Lent

Anthony finished his first full week at Little Star last week, and it didn't go super great, he is still having some weepy episodes and some, ahem, toileting issues, but I think he's having all these issues now because he really misses his teacher, Miss Cutter.

I want Miss Cutter, he says with his iPad and it's so hard, we want to give him what he wants, especially when he asks for it on his iPad.  But of course we can't, he can't have Miss Cutter right now.  It makes me think of when he went to the Zoo a few years ago and his therapist said he loved the dolphin show and my first thought was, can I get him a dolphin?  Ha ha I am crazy.

Anyway, I think it's good that he misses her.  He had a big heart and he loves his people and it's reassuring that he can feel emotion.  I mean, of course I know he can but sometimes we get so weary by the end of the week that I have doubts.

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


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


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


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.