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

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.