Sunday, December 30, 2012

Year End Meme

Here's a year end meme I always do for the kids:


1. What did you do in 2012 that you’d never done before?
Got on a horse.  Started using PECS.  Turned seven.  
2. Did you keep your new year’s resolutions, and will you make more for next year?


I want to get Anthony a dog and I didn't this year, but I am hoping to next year.  
3. Did anyone close to you give birth?


I guess not.  
4. Did anyone close to you die?


No, thank God.  
5. What countries did you visit?


Not only did Anthony not visit any other countries, he rarely left the county, ha!  
6. What would you like to have in 2013 that you lacked in 2012?
To be totally and completely toilet trained.  
7. What dates from 2012 will remain etched upon your memory, and why?
There's probably not one date, but when Anthony started using PECS at school was a big day, and he's made a lot of progress.  
8. What was your biggest achievement of the year?


I'd say really excelling at PECS.
9. What was your biggest failure?
I don't know that it's a failure, but I know we'd all be happier if Anthony and we could communicate better.  
10. Did you suffer illness or injury?


Ha!  My sister pointed out that I must have forgotten about Anthony's being hospitalized for ITP but I didn't, I just skipped the question entirely.  It was the end of August when he woke up all covered in bruises.  I was convinced that he had leukemia but I had no time to think of it because it was also the girls' first day of school, ugh, it was just crazy.  Mike took him to the ER and I took the girls to school, then I met him at the hospital.  Shortly after I got there the doctor said it wasn't leukemia and then I didn't care WHAT it was, I was so happy.  My mom and aunt Barbara came to get Felicity and Anthony and I stayed there over night.  It has slipped my mind how horrible it was and how worried we were because now he's fine, he doesn't even have to see the doctor anymore.  He also had some colds and some stomach bugs but mostly he's been fine.  Mostly I am very grateful for his good health.  
11. What was the best thing you bought?
I bet his trampoline, although we haven't had too much time to use it.  
12. Whose behavior merited celebration?
Anthony's - and his therapists, his program manager and his speech therapist, both of whom I feel really work for Anthony and want the best for him.  
13. Whose behavior made you appalled and depressed?


Probably mine!  I wish I had more patience for Anthony, particularly this week when he is going so bonkers not being in school.  
14. Where did most of your money go?
Anthony got a bounce house for his birthday, we got him a trampoline for Christmas.  His insurance rate has like quadrupled since we got it.  
15. What did you get really excited about?
We're excited about PECS and the promise of better communication with Anthony.  
16. What song will always remind you of 2012?
Call me Maybe, we all sang it a billion times with Maria.  
17. Compared to this time last year, are you:

– happier or sadder? Happier.
– thinner or fatter? Fatter, heavier, but really just growing.


– richer or poorer? Richer, I guess.  
18. What do you wish you’d done more of?


Peed on the toilet, ha!
19. What do you wish you’d done less of?


Peeing everywhere else.  
20. How did you spend Christmas?


We were here, for the first time with all my siblings and my mom.  
21. Did you fall in love in 2012?
Ha - he loves his therapists, for sure.  
22. What was your favorite TV program?


Anthony likes the Wiggles, STILL, and his new thing is the Gigglebellies.  
23. Do you hate anyone now that you didn’t hate this time last year?


No.
24. What was the best book you read?
I don't think he's reading any books right now.  
25. What was your greatest musical discovery?

Probably the rocking Gigglebellies, ha!
26. What did you want and get?
I think Anthony wants to be happy, just like everyone else, and I think he is, for the most part.  
27. What did you want and not get?
Oh I know we wish we were 100% on toilet training.  God, I know I go on and on about it but I feel like in so many ways we are so close.  
28. What was your favorite film of this year?
What did he see at the theater, I forget.  Madagascar III, I think.  
29. What did you do on your birthday, and how old were you?
Anthony turned seven this year and we got him his bounce house.  We had a party and he had a good time.  
30. What one thing would have made your year immeasurably more satisfying?
Better communication.  
31. How would you describe your personal fashion concept in 2012?
We have started dressing Anthony in more sweat pants, so they're easier for him to work but otherwise I always pick out skull and crossbones stuff for him, he's a real tough guy.  
32. What kept you sane?


School.  
33. Which celebrity/public figure did you fancy the most?
He likes The Wiggles, still.  
34. What political issue stirred you the most?


Anthony doesn't care about politics but he is affected by health care, that's for sure.  
35. Who did you miss?


I know for a fact Anthony misses school when he's not there.  
36. Who was the best new person you met?


His new therapists Mary and Christa, I can't remember who all was new to him, Kassi, Whitney, maybe?  
37. Tell us a valuable life lesson you learned in 2012.


Oh I don't know.  We have to stick with things, I know that for sure.  
38. Quote a song lyric that sums up your year.


The wheels on the bus go round and round, round and round, round and round.  The wheels on the bus go round and round, all through the town.  Ha!

Thursday, December 27, 2012

All Out

I am all out of patience with Anthony!  All out!  He is driving me bonkers.  Mike, too.  EVERYONE.  Well, just Mike and me.  Mike said the other day, and it's true, outside of his therapists, there are only two people on EARTH who understand exactly how hard you have to watch him and frankly, we aren't even 100% all the time.

Things are going well with the PECS, in that he is asking for things and getting them and he seems pretty happy about it.  But other things are not going so well.  He is grabbing us again, he bit my mom, he pushes the baby, he is climbing on every thing in this house.  It's not even that bad - because although he is grabby, and he bit, it's not really the kind of thing that hurts (or so my mom said, she is maybe just being brave), but what I mean is, he's not driven by anger, it's not like he is trying to hurt you, plus he is just a boy, but man, it's annoying.

The climbing this is dangerous and scary and annoying.  I have plexiglass around our banister upstairs and now he's climbing over the railing and standing INSIDE the staircase and, um, many feet up in the air.  I am terrified he's going to pull the china cabinet over on himself.  But I have to have furniture!  We have stairs!  What to do?  I told Mike today, we should have a ranch house, made of clay, with no furniture in it.

I know that he will get better, I know we have been through stuff before and it's gotten better.  I know that his therapists need a week off at the holidays and I think they deserve it but LORD.  It's torture.  I know he wants to go somewhere, I wish I could take him somewhere.  Mike took him to the store today and he said he was very good, he likes to go places.  But it snowed a lot yesterday and today we went to the store and - we can't take him to a bounce place or whatever when everyone in town is on break, it's too crowded.  He gets frustrated and he doesn't understand lines and blah blah blah I know iI am complaining.  Tomorrow is Friday and then the weekend and then next week we can get back on schedule but it is daunting to get through holidays like this, to dread them so much and read on Facebook about how awesomely awesome everyone's holidays were.  I will say this, he loves the Gigglebellies DVDs we got him and his new beads, so there's that.  I guess our holidays were awesome too.

Wednesday, December 05, 2012

Post Office

Yesterday, against my better judgment, I took the girls to the post office with me.  I wanted to mail this sweet dress to a friend of mine who has a baby girl.  The dress is like a black watch plaid, with red, and has matching bloomers and her daughter is 6 months old and I just thought it would be great for a holiday party.  Anyways, I had to mail that and a package to my friend Brenda, who just had a baby girl.  The post office was PACKED (early in December, what the heck?) and I had to wait for a parking space, so I opted to use the machines out in the lobby rather than try to stand on line with the girls.  I was tapping away on the machines and sticking postage stickers on the boxes and some lady started talking to Maria.  She said, are you a big sister?  Are these your little sisters?  How old are they? So Maria said yes, yes, we are 4, 3 and 1!  The lady said you must be a great big sister and Maria said I have a big brother, too.  He's seven.  I started to perk up my ears.

Maria said, his name is Anthony.  The lady said, he must love having all those girls around!  Maria said, and I could hear her start to waver, um, he likes us okay.  She said, um, he doesn't really talk too much.  The lady said he doesn't?  Maria said no, AND he walks on his toes!  He wears BRACES!  On his LEGS!  Finally I turned to the lady and she said, he wears braces?  I said, he has autism and is a toe walker, so he wears braces.  The lady - well, she just changed everything.  I mean, she was being so nice and really keeping the girls busy while I packed up everything, but she sort of melted and I could tell she felt so sorry for me.

She said to Maria, he must be so special.  And Maria said, "kind of!".  Ha!

I hate for people to feel sorry for me because Anthony has autism.  I was reading a friend of mine's Facebook the other day and she said some girl asked her about Fragile X, which her twin boys have.  The girl asked what is it and my friend said it basically makes them have autism and the girl said too bad, or something, and my friend said well, it was too bad and now it's just life.  And that's how I feel too.  It's just life.  The girls are sort of bad at the post office, and it always makes me nervous because somehow I feel a federal offense will be involved if they are too bad, and Anthony has autism.  It's just life.  So don't tilt your head at me, lady!  We are fine!

P.S., I don't always feel like we're fine, sometimes I feel like we're NOT fine, as a matter of fact, but mostly I do think we are okay, or we will be.  But I am reminded of how fine we are when Maria looked so confused about that lady saying how special Anthony was.  She was like, what?  Anthony?  She doesn't relate him not talking much or wearing braces on his legs meaning he's special.  Who knows, she might think every boy named Anthony does.  Anyways.  It was funny, she's funny.  People are well meaning but not always the comfort they mean to be.  That's my update!

Saturday, November 24, 2012

Christmas Cards from Shutterfly

Stationery card
View the entire collection of cards.


I made and ordered our Christmas cards today.  They say Happy Holidays because I have some friends who don't celebrate Christmas so I get ones that say Happy Holidays and then just write on everyone's cards.  I think it's more personal that way anyway.  I've used Shutterfly for cards for years, for Holiday cards and this year, I made a little "My Family" card for Maria's preschool assignment.  It cost like $3.00 and it was so super easy.  I also made Father's Day cards for Mike and my Dad this year.  I've been trying to take more pictures with my real camera lately and it's nice to use the pictures!

Wednesday, November 14, 2012

PECS at HOME

On Monday of this week, Anthony's speech therapist and the assistant clinical director (I think that's her title) brought Anthony home and we worked on how we'll use PECS at home.  It's hard, it's hard to do anything with these GIRLS here, but we managed and it was actually pretty funny.  Anthony's speech therapist made a book for the girls, too, which I thought was incredibly smart and sweet.  Smart because maybe if they had one of their own, they'd leave his alone and sweet because it is really nice of them to think about Anthony's siblings, too.  I read all these articles about GLASS SIBLINGS or SAD SIBLINGS of kids with autism and although I think mostly it's bunk, I do try to be thoughtful of the girls and possible jealousy or whatever.

Anyways, we have his book and it has mostly food in it, as that's Anthony's big motivator right now.  It's pretty simple - he is walking around the kitchen, and seems to want something and I say "get your book!" and he does.  Yesterday in the morning he was in the kitchen and pulling me around and I said 'get your book!' and he got it, ripped off the raisins, I got some and he ate it.  Poof!  He's cured!  Ha, kidding!  Still it was nice to have such instant gratification.  

We are going to continue to work away on it, I imagine we'll have better opportunities on the weekend.  During the week, we are really only with Anthony for a brief time in the morning and then for dinner time, and bath time, for a total of like three hours a day.  On the weekends, we'll have more time to see what he wants and how he can communicate that.  I don't know what the weather will be like this weekend, but surely we can't continue to have such nice weekends, right?  Time will tell, I guess.  

Next Thursday is Thanksgiving already, that's crazy, right?  Anthony is just off Thursday and Friday but the girls are off all week, ugh.  Every time I mention it on Facebook, I get yelled at, but it is super annoying to me that since they started preschool at the end of August, they have been off for one week in October, now one week in November, and then two + weeks at the end of the year.  Lord, that seems like a lot!  It's hard for them to get a groove going and it's hard for me to not get really sick of them, ha!  Anyway, maybe we'll find something fun to do.  

I am hoping to keep track of our PECS stuff here, Lord knows if I'll have the chance but that's my hope.  I am only able to type this today because Felicity fell asleep on the way home from preschool.  

Oh I forgot!  Anthony got a spider bite and his whole face swelled up!  Well, just one side and his eye but it's been awful.  It's hard especially because he looks so different.  When someone doesn't talk to you too much, or at all, it's hard when they look different too, because that's all you have.  But that's just how it's been hard for me, it's been hard for poor Anthony because his vision is affected, he's had to take Benadryl which makes his stomach messed up, and it must itch.  I would like to state publicly that if ANTHONY COULD CATCH A BREAK, I WOULD APPRECIATE IT!




Friday, November 02, 2012

Halloween

Ugh, I hate when I leave up a sad post for so long!  We have been busy and crazy as usual but I am determined to post on everyone's blog tonight.  Today is Friday and Anthony was home sick from school this morning but he went in this afternoon.  It's not even 9:00 and he is quiet, which is worrisome, I fear he'll be up at the crack of dawn or earlier but what can you do?  NOTHING.

Yesterday, (I'm working backward), his program manager called and said that he was sick, he had thrown up 'all over his cube'.  He has a cube at school, have I ever said?  It's so nice, it's just the size of an office cubicle and it has all his favorite things in there.  His old weighted blanket, which probably serves as a lap blanket now, his drums, his DVD player, his iPad, all sorts of stuff.  He has all his work in there and work he does, except not yesterday.  I guess yesterday he was kind of puny when Mike took him in but then he threw up and Mike went to get him.  I had *just* put Felicity down for a nap when she called, our plan was to go get Mike and then go to Mass (yesterday was a holy day of obligation) but it all got scratched because Mike had to go get Anthony.  He lay around all day, he wasn't upset and he didn't throw up again.  In fact, he had dinner and seemed fine.  Then right before he went to sleep, he kicked the HELL out of his door, laughing and laughing.  What a whacko he is, he was so puny all afternoon and I felt so bad for him and he must have just BOOM! felt better, which can sometimes happen, but the way that he indicated it was by kicking on the door, ha!

Wednesday was Halloween and he could dress up for school.  They always go trick or treating at the office next door, and this year they were invited to a party at a place across the street from their school, so it was exciting!  He came home with a bag full of stuff.  I didn't know what to do for a costume, we always want him to be comfortable and no masks or anything, two years ago he was Alexander (from the Judith Viorst book) and last year he was a rock star and this year I just couldn't think of anything.  So I asked on Facebook and my friend Molly said Lumberjack, AND she posted a link to a do it yourself ax made of duct tape, so that's what he was and it was just great.  He brought home a bunch of treats, but he doesn't much like candy so mostly we just added it to the girls' stuff.

What else?  I took a bunch of pictures for his PECS at home book.  It ended up to be kind of depressing, because I wanted to get pictures of everything he likes, things that are motivating to him, and there isn't that much!  No wonder he gets so sick of us on the weekends!  But I am excited about starting the PECS at home, so I don't care.

Two last notes:  he has not been grabbing at us anymore.  They advised us at his school to just ignore it, not to do anything and even though it was hard, it worked.  He just stopped doing it.

And my internet friend Jean wrote this great post about What is Autism and it's just great.  Her son is on the spectrum, as is she, and of course they and Anthony's autism is all very different but there are similarities too and at the least it's a great post, really clear and smart.  So read it!

Here's a picture of Anthony on Halloween, and some other fall pictures.  He is damned cute, if I do say so myself:







Friday, October 19, 2012

Grief

I read this book a long time ago, have I ever said?  It was by .. Sue Miller, I think and I always think it was We are the Mulvaneys but it's not, but it's like that.  It's about a family with three or four kids in Chicago and the couple gets divorced and their one son has autism.  He is pretty non verbal and I remember the mom sings a song to him to the tune of Oh Danny Boy, called Oh Randall Boy.  Anyways, he is 1970's autistic, you know, the dad wants him to go live in a home and the mom doesn't want him to.  Eventually he goes and lives in a home and he gets hit by a car while on an outing and he dies.

So I always think about that book and that character and I always think I don't want Anthony to get HIT BY A CAR.  I mean, it's crazy, of course, that that would happen to Anthony because it happened to some character in a book but it has stayed with me and I think about it all the time.

Lately I have been putting Felicity in some clothes of Anthony's and it's killing me.  I was changing her into his outfit today and I was telling her it used to be Anthony's and I got all upset.  I feel like he's gone, like I am grieving some baby who died or something and he is RIGHT HERE.  It occurred to me today that I am grieving, and while I am not a person who buys into the whole 'where did my son go when the autism came and got him' type of thinking, I guess I am grieving the loss of how I thought it was all going to go.

We had such a great day yesterday, Anthony's speech therapist wrote  and said he is moving to the next stage of PECS which is when he comes home with his book and we use it here so that's exciting.  I mean, I was really excited!  And then when I went to pick him up his therapist seemed sort of sad and she said that they had had a bad afternoon, that he was grabbing at her and yelling.  Then he did the same thing to Mike and then me and I was so scared.  He is strong and he is only SEVEN and ay yi yi, I do not want him to beat me up!  I can't take it!  I can barely take it when Felicity pinches me and that's by mistake.

I mean, I know he's not going to do that.  Logically I know that it's just a phase, a bump.  He is doing so great with these PECS, I mean, I think better than anyone anticipated.  I'm sure that doesn't come without some behaviors, if I know Anthony.

Last night I was doing some google searches on autism and grabbing and I found this article about a teacher in Florida who got fired for grinding a shoe into an autistic child's face because he wasn't listening to her.  Can you imagine?  Mike and I were talking this week about how people who work at group homes are paid like barely over minimum wage and they are the ones taking care of people like Anthony.  It makes him want to live forever, Mike said, and I agree.

So even though I try to take things one day at a time and sometimes one HOUR at a time and even though I am grateful to God that I have Anthony and that we all have Anthony, some days are very hard.  And today is one of them.

Monday, October 08, 2012

Depressing

Well, this is a depressing article.  Opinion piece?  I don't know what to call it.  I do know that I really don't like the Huffington Post, I don't even understand what they are exactly, but I do feel like they come down on the wrong side of autism, or at least autism the way I see it.  They post a piece by Jenny McCarthy, talking about vaccines and autism, and then they post a piece about someone else saying that vaccines cause autism and decrying their theory.  Then they post a piece like this and I - I don't even know what to think.

I mean, I could see how this woman feels so badly about her and her daughters' situation.  I feel a lot of pressure in my life because I have four kids and they all have varying needs and of course, Anthony's needs are more special and more long-lasting, I guess, but man.  If I thought this way, the way that this woman does, that 'autism sucks and then you die', I could not get out of bed in the morning.  I mean, do I want to work on toilet training with my seven year old?  Not really.  Do I want to work on it with my 10, 18, 25 year old?  Not a chance.  But if it's what happens, it's what happens.  What else can I do except be a parent to my child and do what they need?

This piece just seems so political.  I mean, I guess that's the point of the author, right?  She cherishes her firstborn, it says.  Me too, I think!  Yay!  Another mom of a child with autism and we can be on the same page.  Then she says that her firstborn is a child who was 'not born with autism' and I think what now?  Who cares?  I mean, I CARE.  If Anthony wasn't born with autism and he caught it at his doctor's office or from his diet or something, of course I care.  But I can't see it, and it's too much to get into why but I just disagree.  And also, I think, who cares?  What good does that do this woman, or her child, whom she cherishes?

I think about how fast lives can change.  I'll tell you what, right now I am planning on giving my kids the tools that they need to get through their young lives.  I am trying to teach them right from wrong, how to be nice, how to QUIET DOWN (Maria), how to walk, eat, sing, play, on and on and on, I am teaching them, I am parenting them.  I am planning for Maria to start Kindergarten next year and Veronica the year after that.  But who knows?  What the hell do I know?  If something ever GOD FORBID happened so that Maria couldn't start Kindergarten next year, I would have to adjust, right?  I'd have to change my plans so that her needs could be accommodated.  That's what parents do.

If you want to have a perfect child, I suggest you go to Target or the Drugstore and buy a nice frame and then just keep the picture that comes with it in there and have that kid in the picture be your child.  Because that's the only way to get a perfect child!  Human children are complicated, there are no guarantees that you are only going to be able to parent for 18 years and then you are free.  Also, there are no guarantees that you will live forever!  Why does this woman fret so much about how she has to be a parent forever, how no one will take care of her kids once she and her husband are dead?  I mean, we could all go at any time.  I feel like I am missing something, like this will all come back to get me, but I swear, even if it all turns around for us and Anthony turns into an aggressive person, and we are all miserable, I'm not going to be sorry that I once wasn't miserable.  I'm not going to be sorry that I didn't blame the world and make up reasons why he got autism.  I am going to take the life that I've been given, and take Anthony's life, that HE'S been given, and make the best of it.

Sunday, September 30, 2012

Sunday, again

I just looked at the clock, it's 9:06 and it occurred to me that Anthony is quiet.  He went to sleep early last night and slept until a reasonable time.  Did I say he has been waking up early?  I can't remember if I said that but last week he woke up at like 4:00 and 4:30 several mornings.  On Wednesday, his program manager emailed me and said that he had been lying down (never happens) and that he had a low-grade fever and was holding the right side of his face.  I forwarded the email to Mike and he said that the right side of his mouth was the one that Anthony was really reluctant to have brushed recently and we put 2 and 2 together and got ... four!  Thank GOD!  Mike took Anthony to the dentist on Thursday and they found that our poor baby had a cavity that had (was?) abscessed and he had to have it pulled.  They were going to have to sedate him, so they'd do an x-ray once he was out and the dentist felt like he'd probably find more cavities.  It was going to be scheduled for next week, which was a bummer because he was obviously in pain.

BUT it turned out the dentist's office is closed this week (next week, last week) so he got squeezed in for Friday morning.  Mike took him and hoo boy.  We were so worried about that damned sedative because Anthony doesn't like to take anything orally, we have the hardest time getting Advil into him.  I swear to God, if these children don't get better at taking medicine via their mouth I am going to stock up on the suppositories!  Then I'll show them who's boss, ha!  Anyway, thanks GOD, it went just fine and he took the sedative.  The dentist (we'll call him Dr. Kevin because that's his name) found two other cavities and filled them while he was in there.  They had to take him out in a wagon because he was still woozy, isn't that a sad image?  It got sadder because it was the longest, saddest afternoon I've had with Anthony in a long time.  He was miserable, in pain, I'm sure he had no idea what happened to him, he was numb, he was tired, he seemed confused, ugh ugh it was terrible!  I had to go to work at 5:00 and Mike texted me a picture of him, he had come downstairs for dinner and he looked just great and back to normal.  I was so relieved, and so grateful that Mike thought to send me that picture.  Yay, technology!

Today after church I had an epiphany and that epiphany is that I am a real witch.  I have a friend at church who is the mother of SIX boys, from a two year old to a 14 year old or something.   She has twins and one of them has cerebral palsy and autism and I chatted with him a little bit today while he waited for his Dad.  He was so cute, telling me about Pooh and Tigger and how Tigger didn't like honey so he took a bath in it.  I don't really know about that, but he was sincere as hell, ha!  He was a great talker, but maybe not such a great communicator.  I was thinking later, I am always feeling sorrier for myself and for Anthony, MORE sorry for myself and Anthony because he doesn't talk.  I feel like other moms of kids with autism who are verbal or who are 'higher functioning' (dreaded term) have it so much better than we do.  I think, well, their child talks!  That's all I want!

But of course it's not what I want, I thought today.  What I want is for Anthony to talk and to tell me, I'm so happy, my life is great, you are a great mother, you're hair looks fabulous, ha!  But just because he talked, it doesn't mean that he'd communicate with me in the (unrealistic) way that I want.  Of COURSE it doesn't mean that!  And yet, that's what I've been thinking, every time I have a small, mean thought about another mom who doesn't have it as bad as I do.  I'm so dumb but I'm learning.  I'm getting there.

Anyways, he's down one tooth but up two fillings and it's such great news because Mike and I were wondering what we should do with any extra money and now we know!  Dentist bills, ha!

Wednesday, September 26, 2012

Hang in there!

Ha!  I kill myself, so funny.  

Here's Anthony, at school.  His program manager emailed me a few pictures today, they got him a bar like he has here because he is so into hanging lately.  Look at his little belly.  

Lately I've been thinking about when Anthony was a baby.  I think it's because I am spending so much time with Felicity, just Felicity, while everyone is in school and it's been since I had just Anthony that I was just one on one with a baby.  Our golden time was when he was older than nine months and less than 18 months.  He was sleeping well but not too crazy yet.  He did get a little harder to manage when he was around 18 months old.  

But I don't think that's because he developed autism or caught autism or whatever.   I guess it's like that for some people, but it's not like that for us.  When I think now about how Anthony was when he was a baby, I have no doubt that he has had autism, or developing autism or whatever, since he was born.  Maybe since before he was born!   Maybe not, I am sure I don't know.  I don't care, either, but I am reminded of it because one of the Real Housewives of NJ's son was just diagnosed with autism and she is quoted as saying that he regressed, I'm not sure if she blames his vaccines or whatever but I guess we'll see.  

Anyways.  Anthony is doing great, he's doing PECS at school and it's going well.  Mike and I are going to be trained on it soon, I can't wait!  Anthony has been waking up early, EARLY the last two days and it's TORTURE.  I have confidence it will get better soon though, and it makes me grateful.  It used to be like this all the time, he used to never sleep, it seemed.  Maybe he'll go through another period where he's not sleeping again but I am grateful that we've had such a good stretch.  I'm grateful I don't have a little bad sleeping baby, too, while he's awake.  

I always think if we could just get one more thing straightened out we'd be good to go.  If he'd just be 100% toilet trained, if he'd just stop taking off his clothes, if he'd just communicate better.  But the thing is, it's pretty good the way it is.  He can be willful, he can be loud as hell, he can wake up early, but overall he is just doing so, so well.  I'm so happy and proud of him for the MOST part that I have to be happy and proud of him all the way.  

BOY this is rambly.  I started typing it when the baby went up for a nap and she has stopped yelling so I suppose I should get something done.  For those checking in, he's doing well, he has a checkup with the hematologist this week where we expect more good news, all is well.  We are hanging in there.  I can't stop!  Ha!  

Wednesday, September 19, 2012

He Ain't Loud, he's my ... Well, He's Actually Pretty Loud

I read this article today and it made me mad, as usual.  God save me from adult siblings of people with autism, crying, CRYING, about how hard their life was because their SIBLING had autism.  Can they hear themselves, these people?  How do you justify that?  How must that make their parents feel?  Wretches, each and every one.

But it's not the article that I want to write about.  I want to write about what I was thinking about today, which is that the author of the article writes about how loud her brother Anthony is.  Our own personal Anthony is pretty loud.  If I heard him at the Target or something, especially ten years ago me, I'd think "ugh, that kid is loud!  Why doesn't his mother shut him up?".  But of course I don't feel that way now. Now if I heard a kid like that in Target, I'd think "why doesn't Mike shut him up?".  Ha!  But seriously, Anthony is loud and I'm sure it's upsetting to people.  I'm sure it's annoying.  But guess what?  I have to listen to a LOT of things that I don't want to listen to.  When I was in Hoboken, I had to walk to the bus stop, take a bus into the city, and either walk across town or take the subway and guess what?  I had to listen to, and SEE a lot of stuff I didn't want to see!

Every day of my life, I have to hear people.  I have to hear Maria, even in my damned dreams, practically!  Do you know how many people ask me if Mike and I know how babies are made?  Or if we have a tv?  Every day I have to listen to clerks in stores babble on and on and ON about THEIR lives and guess what?  I do not care!  But do I roll my eyes, do I tell them I can't TAKE their questions?  No!  I smile and say, oh, hm, sure, your granddaughter is having a baby?  She's 12?  How lovely, best of luck!

I hear people swearing all day long, I have to listen to crying babies and jackhammers and God knows what else.  I have to listen to grown men say HEY! and snap their fingers at me just because I am a waitress.  The bad grammar that I have to listen to on a daily basis would fill a LARGE BOOK.  I know perfectly neuro-typical people who are so loud they make me want to put my fingers in my ears while they are talking to me.  But do I say HEY, FREAK!  SHUT UP!?  No.  No, I don't and do you know why?  Because I live in the world.  I am a part of humanity and this is our social contract.  You can't just go around telling people that they are too loud, too dumb, too obnoxious.

But.  BUT.  People think they can say this about their own siblings!  Anthony isn't an animal.  He is a human being, to quote The Elephant Man.  He is my little boy, my baby, Mike's baby, Maria and Veronica and Felicity's big brother and I think it's part of our family contract that we love him and stick up for him and don't sit around feeling sorry for how his AUTISM affects US!  Lord.  LORD.  I am glad I am not a person like that, and I am willing to bet that I am not going to raise any children like that.  If you are a person who is bothered by my son doing some vocal stimming so that he can feel good, I would have to suggest that you put your fingers in your ears or get some earplugs.   And then I guess, if I'm being honest, I would suggest that you take those earplugs and stick them in ... your ear.  :)

Tuesday, September 18, 2012

Away

So we went to NJ last week and by we I mean me, my mom, Maria and Veronica.  Mike took off from work and stayed with Felicity and Anthony.  I guess they had a good week, it started when Anthony's platelets were 145,000 (!) at his checkup.  Now he doesn't have to go for two weeks!  So that's all great news.  He is doing well with the PECS thing, Mike and I are going in this week to see him working with it, I can't wait.

I took this picture of him and Felicity last week, isn't it cute?  She loves him overtly and he loves her down deep.  He loves me BOTH ways, I'm proud to say.  We got home on Monday, I hadn't seen him since Tuesday morning and I missed him like crazy, of course.  But I wasn't sure if he missed me.  Mike went to get him and I met them out in the driveway and that child ran right into my arms.  I was relieved but not incredibly surprised, I know he loves me.  Sometimes I just forget, is all.


Thursday, September 06, 2012

Good News

Good news is an understatement!  Mike took Anthony to the doctor today and we found out his platelet count was 55,000.  Last week it was 6,000 and Mike said the doctor said that he was hoping it was 10,000.  FIFTY FIVE THOUSAND!  Mike called me and told me and I cried and cried AND cried, Lord I was glad I didn't go to that doctor's office, what a jackass I am!  But I was happy and relieved and I guess maybe I didn't ever realize how tense I was about it, how hard last week was.  But anyway, all's well now.

Now I feel like we can get back to life.  He does have to go next week to get tested again, and maybe for several more weeks but for now, good and great news.  I am so relieved.

In other news, today I was wondering about Anthony's birthday and who he shares it with and here's a list!

Tuesday, September 04, 2012

Daily

I feel the need to write every day about Anthony because every day someone says "how's Anthony?".  So if anyone is wondering, I am going to answer, he's just fine.  Today his program manager was out and her substitute called and said Anthony pinched his leg on the swing and it was bleeding.  He said it was bleeding normally but he just wanted to let me know.  I told him that while Anthony was in the hospital, he had scratched at some bug bites and they bled but just a little.  I said keep an eye on it and if it seems like it's extreme to call me but of course they never did, it was fine.

But oy, what a thing, right?  To have to think about every little bump and bruise?  I was thinking today thank God it's not Maria, she falls 100 times a day and I am only barely exaggerating.  I am trying to concentrate on the good parts of this - Anthony is seven and he never falls down, he is not a self injurious person, um, I guess that's it.  But it's something!

I am hoping that we have good news Thursday, I am praying and asking for all prayers, too.

Monday, September 03, 2012

Pediatric Nurses and Autism

I'll tell you what, we had kind of a hard time with the nurses and doctors with regard to Anthony and his autism.  It was extremely difficult because I didn't have any time to worry about apologizing for his behavior or whatever, and then by the time I did, I was kind of MAD that I even had to worry about THEM!

When I got to the ER, Anthony and Mike were already there.  I've been to the ER with Anthony before, I took him when he had his first and only ear infection.  He was difficult to take a temperature, he didn't exactly stand still when the doctor looked in his ear, but it wasn't too bad.  He was only four though, then, and now it's more complicated, like everything.  Now he's seven and - ugh, it was the first time we were admitted to the hospital and it was over night and a lot of things were new.

But mostly, for me, it was that the nurses and doctors didn't seem to know anything about a person with autism, and I think that is complete and total crap.   We waited allll day to see the hematologist, and by all day I mean from like 8:30 a.m. until 3:00 p.m.  Anthony was literally climbing the walls when he got there, there was a bench/bed on the wall with the window and Anthony was standing on it, looking out the window.  The doctor seemed kind of horrified that I was letting him up there and the thing is, it was nothing, to me.  I mean, the window was getting smudged, but big deal, I figured, they could just clean it.  But maybe I was wrong - at my house that wouldn't be a thing, but maybe at the hospital it was?  So anyways, I made Anthony come down and come see the doctor.  He was mostly there to talk anyway, so it wasn't an issue.  I know the dude is a pediatric hematologist and probably most of the kids he deals with have leukemia or something - he works at a place called the Childhood Cancer Center, after all, but really?  I kept thinking, with all of them.  Really, you've never seen a child with autism before?

The nurse was nice but she asked me if Anthony understood English.  The Child Life Lady asked if Anthony wanted to come and do a craft.  Every single person on the floor asked me to have Anthony pee into a hat so they could do some urine tests.  Anthony is working on being toilet trained, I told them all, but he is kind of a weird pee-er in the best of circumstances, and these are NOT the best of circumstances, so I'm not sure how much success I'll have with it.  At one point, we sat in the bathroom for 90 minutes to get him to pee.

When the nighttime nurse came on, she came and introduced herself and said she'd be the one giving him the medication.  She said they'd push Benadryl and the medication through the IV and then he'd be connected to the IV all night for fluids.  She said he had to take Tylenol and I hoped they'd push those too but she said they could take it either orally or with a suppository.  I said well, he's not great with the oral medication and he's super annoyed and over it all, so maybe it would be best to do the suppository.  She said "what do you think, mom?  Should we try the oral?".  So we tried it and it sucked and she said "what do you think, mom?  How much do you think he got?".  It was all over my hands at this point and looked at the mess in my hands and on his chin and I said, um, I don't know.  I DON'T KNOW, I said!  What the hell, I was thinking.  Finally I said, listen - I have to bend to YOUR medical knowledge here, but if he needs the Tylenol and he won't take it orally I guess we should give him the suppository.  Sheesh!  So we did - she did and it was fine.  But I hated her for making me be responsible for any of it.  She told me that she had a friend whose son had autism and his name was Max and he was 25.  Once she gave Anthony the medication, she sat next to him and rubbed his hands and she said I could leave to go get a coffee or something, or take a walk, which I thought was really nice.  She called him Max all night, though, ha!

There was no way to close the door well to stop Anthony from bolting down the hall.  I wasn't too worried because the door was locked but it was kind of a pain.  I started just taking him to the bathroom with me when I had to go.  I was tempted to just pee in that damned hat and have them test my urine, just so they'd quit asking me about it.  The night time nurse put a ... kind of a bag over Anthony's penis to catch any urine but they kind of glued it and - ugh, it was just very unpleasant.  I asked at one point if maybe they could just do a catheter and she seemed kind of horrified.  I mean, I know it's unpleasant but man!  So was it all!  I felt like all night I was responsible for keeping him in his bed and connected to his IV and - it was all night, I was exhausted, Anthony was exhausted, it just felt like a lot of responsibility.  Finally at 6:30 I rang the bell for the nurse and - this pissed me off, too - the person said "can I help you?" and I said, can you please send the nurse down here? and the person said "can I tell her what you need?".  I said, unable to articulate it, as I was kind of upset and super tired and dejected, I NEED THE NURSE TO COME DOWN HERE, AS I SAID!  SHEESH!

So.  While I am of course grateful for our luck and I am hopeful that Anthony is going to be okay with regard to this ITP stuff and that someday it will all be a memory, I will not forget how we were treated. I certainly hope that anyone that is studying to be a pediatric nurse or a physician's assistant or ER doctor or whatever the hell will just try to get some exposure to autism so that they can maybe take it easy on the child who has it, or on his parents.  I was looking on line and found this article about it, which gives me hope.  Also at Anthony's school, the nursing students from one of our state universities come and do some work with the kids there.  So I'm sure it's changing, I just hope it's soon!


Sunday, September 02, 2012

Update

Anthony went to the pediatric hematologist on Friday and it wasn't great news.  The blood test showed his platelets to be 6,000.  They are supposed to be 150,000-400,000 normally and the doctor wanted to see them higher than 6,000, maybe higher than 10,000?  I don't really understand it because he does seem better, he has no new bruises and he had all those bruises in his mouth and they're not there anymore.  But anyways, he didn't seem to be responding to the treatment from Monday night.  The doctor said there is a possibility that Anthony is just a slow responder and will maybe do better on the blood test this week, but to me it seems unlikely.

On Thursday, he'll go to the doctor again and we'll figure out what to do if the blood test doesn't show that he has a higher platelet count.  If it's the same, I guess we'll have to discuss other medicines or options.  Maybe he'll take steroids or maybe we'll do nothing.  We are concerned about Anthony hurting himself and the possibility of internal bleeding, so I'm not sure what we'll do.

Myself, I have scheduled any concern for Thursday - I figure there is no point in worrying if it's going to be good news on Thursday.  I am praying for a good outcome and I have faith that it will all work out all right.

Throughout all of it, Anthony seems fine.  He is relatively happy and he's doing well with his PECS.  He's getting there, wherever THERE is, ha!

Monday, August 27, 2012

Idiopathic Thrombocytopenic Purpura

That sounds scary, right?  It's what Anthony has.  I am writing this while sitting on the floor of the bathroom in Anthony's hospital room.  Mike brought him here this morning, after Anthony woke up with black sores in his mouth and on his lips.  GOOD LORD.  I can't even believe it, still, even after typing it over and over.  It was scary.  I immediately started googling stuff but I just knew it was going to be leukemia, I was going insane, planning my funeral clothes, practically!  I know!  I know it's horrible but I was freaking out.

I took the girls to their first day of preschool, and then brought the baby up to the ER, where almost immediately the ER doctor told me his white blood cell count was fine and that he didn't have leukemia.  That's when I really started to cry, the relief of something not happening is often more emotional for me than something not happening.  Anyways, (shouting out thanks) my mom and my Aunt Barbara came and got Felicity and Mike and I sat here with Anthony while we waited.

We got admitted around 12:00, I think, and then boy oh boy did we wait. We had only talked to a resident before that, he talked to us about ITP and told us there were treatments for it.  By this time, I had of course posted on Facebook about it and my friend Joey posted about how it seemed similar to what her son had several years ago, which of course was ITP.  Life is weird, right?  Anyways, finally finally the ped came in and talked more to me and looked at Anthony and then the hematologist came in and said we could either a) do nothing, b) give Anthony steroids or c) give him an IV treatment which might fix it forever, but would at the very least up his platelets so that he wouldn't be in danger of INTER CRANIAL BLEEDING like he is now.  We couldn't do a) nothing because Anthony is too "active" (this means crazy, he was standing on the couch when the hematologist came in, ha!) and he could hurt himself and then have internal bleeding.  So.  That's out.  Also b) steroids are out because we are not interested in possible side effects which include increased agitation and possible psychotic behavior.  My brother Larry took steroids for an auto immune disease and thank God, never had any side effects but we can't risk it.  So, it's c) the IV treatment and God willing, they'll do it tonight and observe him for 24 hours.

Grateful.  I'm so grateful that it happened today, when the girls started school, so they were covered from 9-2.  I"m grateful my mom and aunt came to get Felicity.  And I can't even say how grateful I am to all these friends of mine who texted me and called and said on Facebook that they were praying.  I swear I can feel the prayers and love from all over the place.

Thursday, August 23, 2012

Lovely and Amazing

When I went to pick up Anthony today, it was his therapist Kassi who brought him out.  She is usually with him in the mornings but she and Mary have switched a few times this week.  Kassi is the therapist who brought him to camp and she is just great with him, and so thoughtful with me, she texts me pictures of him when he is doing something great, like when he was on the HORSE at camp, or a cute picture from when they went to the state fair.  Anyway, she is nice and it was nice to see her.

I was a little late and she came right out and said "Anthony had an amazing afternoon!".  Felicity was crying and I (proud moment) found a bag of Goldfish in the car and gave her some so she stopped crying.  Kassi said that they were just sitting there this afternoon and Anthony got up and came over to her and poked her on the arm and said "p p p p p" which is potty and they went and then, she said, "he took the biggest crap ever!".  Ha!  I am not a person who likes scatological talk but I loved hearing that!    I said, oh that makes me so happy, I can't wait until we get there at home, too.  So I got in the car and I said how I just felt like he was doing well and she said she thinks he's just made leaps and bounds over the last few months.  She said - I can't remember what she said, exactly, but she said that he thrills her every day, and I said, through tears of COURSE, that I'm sure that she thrills him too.  Thank God I am always wearing sunglasses, sheesh.

I really feel like we are really getting there, I told her.  I don't know where it is, but I feel like we're getting there!  It does make me cry to think about it, because if he could just tell us, any way, what he wants or what he needs, oh my God, what else would I ever need, in my whole life?  And now of course I think that maybe this is the miracle I've been praying for.  Oh, life.  It's too crazy, too much, some times, how incredible it all is.

THEN I got home and I got my Crappy Day Package in the mail.  Typically they have been a box with various fun things in them, so I was intrigued when the package said "fragile" and it was a small box, it fit in my mail box!  So anyways, I opened it because I have no self control, and they are all kind of crappy days around here lately, and I found this picture and a note that said that this reminded the sweet sender of Anthony Joseph.  And of course, it really DOES seem reminiscent of Anthony, doesn't it?  It was so great to get it today, when I was already feeling all warm and happy and hopeful about him.

So anyway, I never say this, but I think people are really lovely and the world is really amazing.  I am so bullish for the future, I hardly even know who I am anymore!


Wednesday, August 22, 2012

A friend of mine had a baby recently, her first, and I keep thinking of when I had my first baby.  It was never a situation for me where I felt like, well anything like, "this is so great!  I am so lucky!"  I felt like when I was at IU that first semester and people kept saying to me, "isn't it awesome?  Don't you love it here?" and I would think, NO.  No I do not love it here.  Mike and I had the same first semester at IU and I always joke that if we had met there, we never ever would have gone on one date because I hated people like him, people who LOVED it at IU and thought it was AWESOMELY AWESOME.  I think the difference was that I was happy where I was, I was living in NJ and going to a community college for what I thought would be two years, I had jobs and friends and an interesting and fun life that happened to include going to college.  At IU it was like there was NOTHING except college, all the friends and the jobs and the - everything - was in one place and if you didn't like that place, well, you were screwed.  My sister and I didn't like it and so we were screwed.  So we did one semester there and then we got the hell out of Dodge (Bloomington) and we went back to Indianapolis and finished up there, where we could have jobs, friends, etc., stuff outside of just college.  Also we missed our mommy and daddy but WHATEVER. Ha!

My friend who just had the baby said something that I've noticed a lot of people have said, which is something like that she wasn't good at newborns, that it triggers too much anxiety and fear.  I always think, who?  Who among us is good at being anxious and sad and tired all the time?  Who can thrive in such an environment?  Firemen, maybe?  Racecar drivers?  Maybe, but the analogy doesn't work once you consider that the person's CHILD is involved in the anxiety.  Maybe a fireman does great at putting out fires but maybe he's not at his best either if his LITTLE BABY was in the burning house.  A racecar driver might thrive going 200 mph but not if his newborn was in the backseat, rear facing or not, ha!

I always think, I'm so, so bad at this, so bad at being a mother and ENJOYING it.  I am pretty good at being a mother, keeping them clean and dry and loved and fed and everything but I am not good at enjoying it.  I'm not good at trying to get someone to go to sleep who doesn't want to go to sleep, I'm not good at being super tired all the time, being in physical pain from nursing, or whatever, but I don't apologize for it anymore, I'm sick of it.  I think YOU are the bad mother if you pretend that it's awesomely awesome to change dirty diapers and never sleep and nurse a baby, in fact.  Take that!

I think that it's the worst part of being an old mother.  I think those warnings about how your baby could have down syndrome or whatever are total and complete poppycock.  I think the real warning to mothers who are OLD like me, having their first baby, should be that you are about to have your whole life change, and it's going to happen in an INSTANT.  I can think of no other experience like this - like I got married and my life changed but I dated Mike before we got engaged, we were engaged before we got married, it's completely different.  My life changed when I moved to Indiana, but I was with my whole family and Laura and I were going through almost the exact same experience.  But when I had Anthony, my whole life changed and I had never even MET HIM BEFORE.  And he wasn't THAT NICE OF A PERSON, frankly.  Maybe when you are 22, you are more flexible and you don't notice so much that your whole life has changed because maybe a lot is changing anyway - you're maybe finished with school, you got married, etc.  Who knows.  It feels like it's harder at my advanced age, anyway.

This is sort of pointless but it's just to say that if you just had a baby, and you think it sort of sucks, you are right.  But it will get better and then it will all be a memory and then probably you'll forget and start telling people to 'enjoy each minute', ha!

Wednesday, August 08, 2012

What's So Great About Anthony?

Yesterday I had a thought - I can feel the bad things in my life immediately.  I was taking the girls to swimming and it's such a drag - it's been incredibly hot and so sunny and every time I get Veronica and Felicity out of the car for swimming, they act like I am placing them on the surface of the sun.  Or Mars.  Is anyone sick of Mars?  I know I'm a bad American but I don't give a HOOT about Mars.  Anyway.

So I was thinking, as usual, this sucks and I hate it.  Right there, in the present, I hated it.  And I was thinking I wish I could feel the good things in my life, the luck that I have, in the present the way that I can feel the bad stuff.  I know there are good things but it feels hard to appreciate them.  I find it annoying - more than annoying - when people are like "LIFE IS GOOD, IT'S SO AWESOME TO BE ME! on Facebook, but who's to say that I can't just feel that way without making a big announcement about it?  It's the announcing/bragging that I find obnoxious, not the actual feeling.

Anyway I complain a lot so I thought I'd do a quick round of What's So Great About Everyone to get things back in order.  So, without further adieu, What's So Great About Anthony:


  • There is no doubt that he is a genius.  He is doing so well with this PECS thing, after just one week, he has been flying along meeting his goals at school.  It's not surprising, Mike is really smart and I assume genetics has to play a part, right?  Anyway, genius.  
  • He is gorgeous.  Maybe I'm shallow but it's nice!  His teeth are coming out and in crazy fast and he is so good looking through it all.  Years ago, my friend Susie and I had this friend Susan.  Susan was gorgeous but kind of a wet blanket.  Susie and I were super fun and always had a great time but we'd go out with Susan and it was a real drag!  We were talking one time about why she was so boring, what gives, we wondered?  She was a nice girl and we were in New York City, in our 20's, why is it so hard to have fun with her?  Our friend Jeannine said that Susan just never had to work at anything.  Jeannine said, brutally honestly, that Susie and her and I weren't as good looking as Susan so we had to work harder to be well-liked.  Jeannine said that we three had times where our weight was up, or we were having a bad hair day, or whatever, and so we knew how to rev it up a little bit, personality-wise, in order to get people's minds off our failings.  I think it was true, too!  Anyways, if Anthony ever suffers personality wise, like if he's having a tantrum or hard to communicate with, I always think, well at lease he's good looking!  Just like boring old Susan!  
  • He has the most excellent hair.  Right now, it's kind of in the pre-Rod Stewart phase and it's a good one.  It's laying down and just barely pokes up but I know in a few weeks, it's going to get really excellent, especially in the morning. 
  • He's so lovable.  I think his therapist Kassi had such a good time with him at camp, his newer afternoon therapist Mary is so proud and happy when he has a good day.  They are firm with him but so, so loving.  I can see a really good example of how to be with Anthony from these girls and it's nice, if unexpected, seeing as they are like half my age and not mothers.  
  • This is weird but he's really been leaving his clothes on.  We are working on so many things with Anthony but this has been the most immediate pain.  I don't want him to be known as the neighborhood streaker, it's summertime and buggy, there's a bunch of reasons I don't want him to do it and he's getting better about it.  
  • I was lamenting to an internet friend of mine years ago, about how it seemed like everything written about how to improve your autistic child's life was for kids so much older than Anthony.  My friend's son was like 10 at the time and she told me she remembered, she said "I wanted to throw myself down the stairs every day when he was 0-5" and it was such a comfort.  I thought, oh great, at least I'm SUPPOSED to feel this way!  But anyway, things are better.  He is calmer and more grown up and it helps.  I am hopeful that this, combined with his genius and how PECS is working for us, means that we are on an upward trajectory.  
  • I just bought him some new clothes and he's super cute in them.  Shallow!  

Sunday, August 05, 2012

PECS

Anthony has been working with PECS for one week and it's been going really, really well.  The first day his therapist told me how great it went and I thought nothing of it but by Friday his program manager came out to Mike and said that he is doing really well.  She said that he had FOUR hot dogs for lunch on Friday, that he had requested.  I hate to be so optimistic but it sounds really great.  It seems like for years and I mean YEARS we have been working on stuff with Anthony that seemed like it was for nothing.  Like, he's been looking at things for a certain amount of time, scanning a bunch of stuff and picking something out, etc. etc, and now he's applying what he's learned and hopefully it will help him communicate better.  It feels like we are on the edge of something big.  I hope so, anyway.

He's doing fine, he has really been enjoying the Wiggles lately.  He's been wearing his braces for a few months and although he certainly doesn't seem to LIKE them, he wears them.  I have no idea if they are helping.  He usually hops right back up on his toes when he is out of them.  I hope and pray he doesn't have to have surgery.

My friend Marta belongs to this Catholic group called Communion and Liberation.  The founder of it is Fr. Luigi Guissani and he is, I'm not sure how to say it, but like, he's on the road to beatification or sainthood or whatever order that all goes in.  Anyways, she gave me this prayer card where you can pray to God that Fr. Guissani becomes a saint and you can ask for your own miracle.  SO I've been praying for Fr. Guissani and praying that Anthony gets ... better.  I hate to say gets better, I don't think of him as SICK or WORSE or something but better is the word that I mean when I say that I hope he communicates better, feels happier, learns to live in the world better, you know, it's a lot!  So I hope that Fr. Guissani hears me in heaven and then he can pray for Anthony and then Anthony can get better (you know what I mean) and then Fr. Guissani can become a Saint and then Anthony can be happier and that, my friends, is what I would call a win-win of the highest order.

Tuesday, July 31, 2012

Laid Back

 This was Anthony, on Sunday.  Our weekends are still rough but they are better, always, in the summer.  This has been a difficult summer because it's been so hot but it still beats wintertime.

So Anthony had a great, great week at camp last week.  I think he did so much better this year than last because a) he is older, b) it was just for one week and c) and most important, he went with Kassi, his therapist.  She is wonderful with him and I just know he felt better and more confident with her there.  We have had our ups and downs with his school but we are so lucky that we can do something like this and have a therapist go with him to things like this camp.  I forget if I said but it's called Camp Ability and it's run by Easter Seals/Crossroads.  I didn't know too much about the particulars this year because I never dropped him off or picked him up but it's a great, affordable camp for special needs kids of all kinds and we're lucky that it's so close.

I never update anymore, but what is there to say?  He started PECS this week and his afternoon therapist told me yesterday that he did great.  She was VERY enthusiastic and she said that she thought he'd do well but he surpassed her expectations.  So that was good.  I am hopeful, maybe stupidly, but whatever.  We have to make something work, specifically with regard to this damned potty training.  It's a year this month that we've been doing it!  A year!

So we are plugging away.  I am of two minds on summer, I'll be so glad when SOME of my children (coughMariacough) go back to school but I want the weather to stay nice.  Of course, it hasn't been that nice so maybe it doesn't matter anyway.  Maybe I'm of more than two minds, ha!
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Wednesday, July 25, 2012

Big Day

Yesterday, Anthony came home from camp and seemed good, he had had a good day, his therapist said.  He went straight to the potty to get his braces off, it's been so, so hot here and they are plastic and really bugging him by the end of the day.  So I took them off, chatted with his therapist, and then she left.  I was sitting in the kitchen and he came in and said 'hot dog' and I got him one, crying the whole time, and cut it in pieces and he ate it.  It was such a miracle, to me, but it felt like such a natural thing!

I remember one time, years ago, I had a dream that Anthony was talking and talking to me.  This may have been when I was pregnant with Maria, it certainly wasn't when Maria was jabbering away or anything.  Anyway, in my dream, he was talking and talking, telling me things, and I was talking back and we were having a conversation, it didn't seem strange at all.  Yesterday wasn't like that.  It was the first time that he spontaneously has said anything to me, anything!  Ever!  I could not stop crying, I can't stop crying now, thinking about it.

He was off hot dogs for a while but we decided a while ago to give him different foods, to keep offering them, and just see what sticks and he has gone back to hot dogs.  Maybe that's it?  Maybe we have to keep switching it up and trying different things?  Whatever it is, I'm all OKAY!, I'll do anything, ANYTHING to keep having days like yesterday.

The funniest part of it all was that he was like, whatever, crazy lady, keep crying but cry and give me that hot dog!  He must think I am insane and I think he's right!

Tuesday, July 24, 2012

Camper

Anthony started camp yesterday and it went well, according to his therapist who meets Mike and Anthony there in the morning.  It is punishingly hot here, so I'm sure it wasn't GREAT to be outside but what can you do?  They are little kids, they don't seem as bugged by the heat as, say, I am.  It is like a vacation for me this week because I don't have to load everyone in the car and go get him.  He gets home a little earlier and we hang out and it's very pleasant.

His therapist said that he seemed happy all day but she said it's probably because it's much less structured than his normal day, which makes me happy.  He's just a seven year old boy, he can't be working all the time.

What else.  I am taking this class at the gym with a friend of mine and her mom had a ... I think a stroke, a brain type event, and she is in a rehab facility, taking occupational, physical and speech therapy.  The part of her brain that was affected didn't affect her intelligence, but it affected her ability to communicate and her ability to process things.  I was talking to my friend about her mom and it struck me, man.  We can all be struck with anything, anytime!  I try to think of it as lucky that we have known the deal with Anthony from when he was so little.  Yesterday I was trying to tell him to KEEP HIS CLOTHES on, nothing works, he doesn't get it, but I took a picture of him yesterday, with my phone and showed it to him.  I said, this, this here is what you should look like.  Keep your clothes ON, Anthony!  Like this!  We'll see if it works, but I am going to keep trying, keep pounding away at him until I figure out how to get to him.  I know it's in there - for my friend's mom and for Anthony, too.  I hope they both make some progress this summer.

Tuesday, July 17, 2012

Bullets


  • Anthony starts camp next week, I'm super excited.  He is going with a therapist this year, which I think will really increase his enjoyment of it.  I am hopeful that he'll like the hippotherapy and we can start doing that in earnest this year.  
  • 50 Cent was mean about people with autism.  Hmmm.  I don't know if I care - I mean, it's FIFTY CENT!  He was a criminal!  But I wish people wouldn't replace 'retarded' with 'autistic' and think they're being SNEAKY or something.  God.  Get a vocabulary!  But I'll say this - in protest, we are no longer going to sing "You can find him in the tub..." to the tune of 50's "In the Club".  
  • Mike and I are watching Big Brother and it's so, so weird.  There is this kid on there who clearly has autism of some kind.  He is addicted to Big Brother and remembers every single thing about it.  He walks on his toes.  He lays down in weird places.  He is socially kind of a misfit.  But no one says he has autism.  And when they do talk about him, all of the others, they talk about how creepy he is!  Like, they say, "he's so creepy!  He walks on his toes!".  As if that's the creepy part!  I mean, who cares?  WHO CARES?  
  • All evidence to the contrary, things are going okay with us.  Anthony is always better in the summer, even if it does mean horrible temperatures this year.  
  • What else.  I put Felicity in the tub the other night and Anthony wanted to come in so I let him.  LORD LORD they were cute in there together!  It's too crazy to take a picture but you'll have to imagine it.  Felicity splashing away and leaning over and blowing on Anthony's arm.  They were really lovely.  You could tell he prefers quiet Felicity to those other blowhards he usually has to bathe with, ha!  

Wednesday, July 04, 2012

Happy Ending

So this five year old in Wisconsin went missing and he was found by a man from his community and the guy's DOG, which is amazing, right?  Such a miracle, it's so hot here and sunny.

I cried and cried reading about the boy being found.  He's five, he had a diaper rash, he doesn't communicate by talking, they said, which I guess means maybe he's a good communicator but it doesn't do him any good if he's lost!  He can't show a picture for help!  If a boy with autism shows a picture but nobody sees it, has he communicated at all?  A question for the ages.

Anyway, he likes the Wiggles and singing The Wheels on the Bus, and waah waah I cried reading that, just like Anthony.  What is it about the Wiggles and kids with autism?  Just today Anthony was getting upset and Mike put on The Wiggles for him and it made him laugh and laugh.

He has been climbing up on the window sills lately and it's driving me insane.  He went upstairs to my bathroom before and got out the toothpaste and when I found him, he was standing on the window sill and had a qtip in his mouth, like a toothpick or something.  It's so weird, this new thing of standing up on stuff.  He wants to get higher and higher - today he was standing on the coffee table trying to get to the ceiling fan.  What do I do?  What do I do as he gets taller and can reach that damned fan and tear it down?  I don't know.

My mom was here and she asked what do they say at his school about it?  I mean, they don't say anything!  I don't know that they could.  He doesn't do it at school, even if he starts to, they probably just get him down, seeing as they are one therapist with one child and they can just be with him all the time.  I can't be with him all the time.  Mike was putting the baby down for a nap.  I had my family over to grill out and celebrate the 4th of July, I was doing stuff.

Earlier today he had an accident outside and my lord.  MY LORD, the mess was unbelievable.  I was on the phone with my mother and I heard Mike say he was getting the wipes, so I got off the phone and saw that he was cleaning Anthony up, and I went to wash the bottles and saw out the window that there was a mess on the deck - and without getting into it too much, let's just say that there were about 1000 flies out there too.  So I went outside and Mike and cleaned it up - it is so freaking hot here that it made it worse, and it was EVERYWHERE.  EVERYWHERE!  It was on the floor of the deck and in the grooves of the deck and all over the picnic table and bench and on Veronica's shorts that she had left out there and on the hand rail of the deck and on the spindles of the deck and on the freaking sit and spin and - I mean, it was everywhere, it took forever to clean up.  In the meantime, of course, Anthony was inside and PEED on the floor!  I mean really!

So.  It's hard.  It's HARD.  It's messy and it's expensive because as I said, I'm afraid he is going to break all the window sills and then we're going to have to replace them and then I'll never get my kitchen work done!  But you know, I don't really care about the kitchen, or the windows, or the poop, really.  When we have a day like this and I get so worried, I'd rather be worried about something tangible like poop - something that can be literally cleaned up and wiped away, because if I think too much about what this means for my life, or what it means for Anthony's life, or the other kids' life, I will go insane.  Because the truth is, no one has any answers for us.  And in turn, I don't have any answers for Anthony.  But we are working on it.  I am hopeful that we can figure out something else for him to do instead of climbing on all the damned furniture to fulfill his sensory needs or whatever, before he gets too tall to do too much damage to our house or himself or the girls or me or Mike.  I'm hopeful but that's it.  I don't know what the future holds but right now it's not looking good.

Hmmm.  That's not a very cheery way to end this.  Oh, Anthony was in a parade at his school!  It was so cute, I'll post the video.  That will be a good note on which to go out.  

video





Monday, July 02, 2012

Huffington Post

So today I read that Rob Schneider, of Saturday Night Live and Deuce Bigalow, Male Gigalo fame, thinks that vaccines cause autism.  The Huffington Post, which published the story, is all snooty about celebrities daring to say anything about vaccines and autism, which is funny, because just a year ago, they published a story by none other than Jenny McCarthy.  What a bunch of jerkstores.

I don't know that vaccines didn't cause some kids' autism, but it's certainly not the case with Anthony.  Anthony has had autism from the beginning of his life, maybe before he was born?  I don't know.  Maria had the same vaccines, probably MORE than Anthony did and God knows she doesn't have autism.  Veronica is the same, vaccine-wise, and I'd say she has some sensory issues, but she definitely doesn't have autism.  Felicity had FORMULA and vaccines and so far - NO AUTISM.

But I'm not saying that because this happened with my family, that it's happened or NOT happened with anyone else's.  I don't know.  You know why I don't know?  Because my degrees are in theater and information technology, not in medicine or science or vaccines or autism.  As far as I know, Jenny McCarthy is not a doctor or a scientist, or, I'm guessing, a college graduate.  If she is a college graduate, someone should tell that college to teach a class in Science is Not Bullshit.  Anyways, I'm just saying, shut up Huffington Post.  I am a person who is dealing with the effects of my son having autism.  I am trying every day to help him and love him and prepare him for life.  It doesn't help to publish NONSENSE from IDIOTS.

Sunday, July 01, 2012

Sunday night catchup


I let him do anything he wants, practically.  Mike took the girls to see a movie on Saturday and I was home with the baby and Anthony and as soon as they left, Anthony got upset.  So I put on the Wiggles and lay down with the computer in front of me and the baby to my side and Anthony sat on me and watched the Wiggles and seemed really happy.  I took this picture because - it's just so perfect, isn't it?  My cousin John commented on Facebook that there's a metaphor for parenting in here somewhere and I agree.  

The funniest part of all of it is that he was sitting on me and I was doing stuff, playing with the baby, looking at the computer, etc., and he was up and down.  Sometimes he was sitting on my legs, sometimes my back, I wasn't really paying attention.  Then at one point, he sort of shifted and hurt me and I turned around and said, HEY Anthony!, and he was completely naked, ha!  

I had a meeting at his school this week, we are going to work on a new - well, not WE, not ME, Anthony and his therapists are going to work on this PECS system for communication.  We have had some experience with PECS and none of it is good but we never did it fully, I could never really get it going.  It's a rub, kind of, because you of course want Anthony to have his voice and I suppose maybe it feels like failure to go to a system like PECS, where he'd use pictures to communicate his wants and needs, but I don't see it that way.  I have long ago decided that if it takes SO MUCH for Anthony to talk, if it takes, say, all his energy for the day, then if we can find another way for him to communicate so he has some of that energy, then that's what we should do.  That's what I should do, as his mother, is take care of him and help him.  

He is eating hot dogs lately!  He is pretty happy, overall, he loves the summer.  We fenced in the yard a little so he can't get back to the trees/bugs/poison whatever in our yard so that's good.  We are really happy with the situation at school, I like all his therapists, his people at school, which is just great.  Felicity doesn't hate the car so much anymore so it's even going good to go and get him.  But that is all I'm going to say, I don't want to jinx it.