Friday, November 11, 2016


Halloween! He was Harry Potter, obvs.

Rolling around in the chair that I got Mike for his birthday
Good Lord! How could it be so long since I've updated Anthony's blog? I feel like I am the worst mother to him, and now I'm forgetting his blog too?  I used to be good at at least that!  Well.  I don't take so many pictures of him anymore, so often I need both hands when I'm with him.  He is - he can be wild, to understate it.  I hear myself telling people things - well, like the other night I was telling his speech therapist how I would like to work with him on maybe a schedule because he seems so crazed, sometimes, when we are on our way home.  I pick him up almost every day, and sometimes he gets really wound up, and he punches me/pushes on my arm so hard that I have to remind myself to not put my right hand on the steering wheel because I have nearly driven into traffic several times.
So.  That's a pain, right? I don't want to take pictures of it! So we are working on, as EVER, communication.  I feel like when he pushes me like that he really wants something.  I don't know what.  On his iPad the other day, he was saying "rainstick" and "trampoline" which are both things he has at Little Star.  So I thought maybe he is afraid every time when we leave Little Star, maybe we won't go back? So I am trying to be clearer about saying we are leaving now, we will go home, then have dinner, (go to swimming, whatever) and then TOMORROW you can go back to Little Star.  On Friday of course I can't say that but he has been going to music therapy for a while on Saturdays so I can say that, I guess.  Everything is terrible since we don't have anyone to do respite anymore.  There was a moment two weeks ago when I thought maybe we could have it but it was a false alarm because the person they thought they could get didn't drive, couldn't drive because of some sort of problem with their record.  MMMM kay.  So they were like, we have someone! But they can't do transportation! And I was like, um, okay but can they meet us at our house and go to the stuff that Anthony wants to do?  NOPE.  They were just supposed to come over and I guess, stay at the house with Anthony, which would be great ON OPPOSITE DAY.   So anyway, that was disappointing.  Then last night, Mike and Anthony were getting ready to go to swim like every damned Thursday of their lives when our case manager just STOPPED BY to say that she needed to schedule a meeting.  They were late for swimming because of this pop in! And she couldn't really say when she could meet but she just ... came by, I guess to make them late for swimming or maybe that was just a lucky happenstance.  UGH.  This medicaid thing is awful and it makes me SO PARANOID - I think, they get all these people off the wait list and then they say you have THIS MUCH MONEY! Yay! But that translates to a certain amount of hours because the places that you go through only pay their people like $10 an hour, $11 if you're lucky, although $11 was what the last nimrod we had made and she was awful and I still get really mad when I think about her.  Anyway, they don't pay well and they can't hire anyone and then we can't get any care for Anthony, it's been through MOST of the year, and that money - guess what happens to that money?  It all just goes away from us and right back to the stupid state, even though it is DUE to ANTHONY.  So I guess if I were Indiana, maybe I'd dole out a lot of money but to a lot of people so that it doesn't do any good to anyone and then I'd get to keep the money?

We have been struggling a lot because we used to have respite care and now we don't and Anthony suffered this giant setback when he had to stop going to Little Star and we are just trying trying trying to get back to where we were, which wasn't great but it was better than it is now.

We do have happy moments, he is doing very well at Little Star and he is doing well by going to speech therapy/occupational therapy on Tuesdays but I am impatient.  I want him to do well everywhere.  I want him to not scream so much.  I want him to be toilet trained at night.  I want him to be more lovable to the girls.  As Anthony says with his iPad all the time, I want.  I want.

Friday, February 26, 2016

Friday Update

Last Lent, I wrote about and said nice things about one of my kids each day during Lent but this year I have given up sweets and am saying a rosary every day.  But I thought why not update on Fridays?  Maybe I can do it.

Anthony is doing fine, the last few weeks I've been taking him to swim because we don't have respite staff right now, ugh that is driving me crazy but I am breezily going by it.  Last night I went and exercised at the Y for a little bit while he was swimming but I got back in plenty of time to see him.  He looks like he is doing everything but swimming and I was saying that to one of his teachers and she said look how hard he is working! It takes a lot to hold up his hips like that!  He is great! So that was nice and a good reminder, too, that even if it doesn't look like he is working hard, he always is.

The weekends are super hard but everything else is going fine.  He has been going to Costco with Mike and has been helping!  Like Mike will tell him to get something and he will!  This feels like a miracle.

Here's his school picture and a rare picture of the four of them.  He is getting really big and tall.  He weighs a ton, he is falling away to a ton, as my sweet grandfather might have said but we are just trying to make most of his snacks healthy ones.  What else can I do?  His hair is getting really excellent but Mike doesn't love it.  He never lets us comb it so it gets kind of janky but mostly I think it's so cute, just like him.

Monday, February 01, 2016


Last night, Anthony had a seizure.  It was the same in some ways in that it was at the end of a long and rough day.  It didn't last long.  He slept a lot after.  But it was different in some other ways.  I think he was coming down the stairs when it happened, because before we knew it, he was at the bottom of the stairs, lying down.  He never lies down, but he had several times that day, which always makes me think, crap!, I should have known! Also he didn't throw up and he always throws up so I went looking for it and didn't find it, which is a weird thing to do.  He seemed to have a mark on his head and we thought, did he fall down the stairs? I was right in the kitchen, I never heard a loud noise.  It is a little too mysterious for me.

He has been doing this thing lately where he sort of bashes in to me and I hate it, I'm afraid he's going to knock me over.  But then he has a seizure and I think, does he know? Is he begging for help? I'm going to talk to his therapists about putting in some icons on his iPad for "I don't feel good" or "I have to lie down".  I don't know, it's not perfect but I want to do something.

Anyway, we are as usual plugging along.  I guess - I don't know, I feel like some days are so rough all we can do is maintain.  I feel bad when I feel grateful he has a seizure because I know that means he'll sleep well.  It's messed up but what can you do?  He has been doing very well at swimming and well at OT, he's doing well at Little Star, and we are working on it at home.  And now it's February which is closer to March and Spring!

Monday, January 04, 2016


Anthony is going to turn eleven this year.  That is crazy, to me, and also not so.  I mean, I can barely remember when he wasn't around, when I wasn't thinking about him all the time, so it seems like he's a lot older than that, sometimes.

He is back at Little Star today, thanks be to God.  That is a long break for him and he has been having a severe regression, toilet training wise, so it was really getting kind of nightmarish at the end.  It's not his fault, but LORD is it frustrating!  Anyway.  He has been going to this Incrediplex place near us with Christina on Saturdays, and he did some of that over the break, and some Bounce House places, and it's been going okay.  He got a Casio Keyboard for Christmas and he likes that too.  We are in the middle of yet another insurance denial nightmare.  Mike said, and it's true, that is the black cloud hanging over our heads at all times.  One of the reports that they sent us said that his IQ was 21 and that he had gone as far as he could go in life!  I told Mike I know it's not true, but there is no way to not have a reaction to reading something like that about your own sweet boy.  There is a hot place in hell for those demons that work for insurance companies.

Anyway, here are some pictures!