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.