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, 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!

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!  

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.  :)

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.

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!

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.

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!

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!

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.

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!

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!

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!  

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.

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!

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!

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.

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!  

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.  

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 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.  

Quick Note

A quick note about Anthony, which seems to be all I have time for these days.

He is doing just fine, but he doesn't like those braces!  I feel badly for him but they seem to be helping.  We went back to the orthotic guy, who was very nice, to see about some blisters he was getting and now he's been fine.  It turns out what we thought were hives was poison ivy or poison of some kind and calamine is really helping.  Want to get really frustrated and worried, though?  Google autism and hives.  People have some WHACKY ideas about autism.

What else.  He went to the splash park this week and to the zoo, on field trips with his school.  He did very well, they said he loved the dolphin show!  Whenever I hear that he really loves something like that, I am immediately thinking "well, let's get him a dolphin!".  Ha!  I am a desperate woman.

I would never talk about his sleep but if I did I'd say he's sleeping well.  He has been having less tantrums too, I'd say, if I talked about such things.  He is defining one step forward and two steps back as far as toilet training goes, but it will get better.  Hell, Veronica has been toilet trained for a long time and as I told Mike yesterday, she had a poop accident yesterday that I could only describe as volcanic.  It's complicated, I guess, and for poor Anthony more than other people, so we'll take what we can get.

He is out in the bounce house now, having fun.  We are going to lunch with some friends today.  I follow this autism dad on Twitter and he said that this year he was getting his son to try 30 different and new foods and I might do something like that with Anthony.  I'd love it if we could expand his horizons a little bit.

So far, seven is going well, so it's onward to eight I guess!

Insurance and ABA

I just read this article today and it gives me hope that maybe we won't get the screwing that Anthem BCBS is trying to give us with regard to Anthony's insurance.

When we were first looking at ABA places for Anthony, we were worried that Mike's insurance wouldn't cover it because they are a) Federal and b) self-funded and therefore they don't have to abide by the autism insurance mandate in Indiana.    Turns out we were right to be worried because they didn't cover him.  I met my friend Theresa because someone at Anthony's school gave me her number and she gave me a lot of information about how she got her son his own insurance policy and that they covered ABA therapy.

We got the policy for Anthony and oh, it was like Christmas in July!  Or February or whenever it was but it might have actually been July now that I think about it.  We were so excited and Mike said then, we should be sure to pay that premium the day the bill comes in the mail because I'm sure they'll want to get rid of Anthony for any reason.  Our premium has gone up several times, now we're paying more than double what we did three years ago but who cares?  It's always going to be better than the self-pay option.

Every once in a while*, though, we get a vaguely threatening letter from Anthem BCBS saying that they are going to look into whether or not Anthony still needs the treatment that he's getting.  And we have to take him to his developmental pediatrician every six months to reassure those bastards at Anthem BCBS that he still has autism.  It's infuriating.  So hopefully what this article is saying is that insurance companies like Anthony's will have less ways to screw over families like ours.

*seriously, they always send them so we get them on holiday weekends.  I think they want us to miss reading them so we don't know what's going on.  CREEPS.

Happy Birthday to Anthony

 Seven years ago at around this time, I was just getting out of recovery from having Anthony, he was maybe nursing?  Ugh, who knows!  It seems like a long, long, LONG time ago, I can seriously barely remember it.  He was a beautiful baby, though, and he never seemed small, even though Maria and Felicity were both bigger than he was at birth.  He never lost any weight at all in the hospital, I used to joke to Mike that he was probably getting a lot of protein and calories from the blood he got while nursing, ha!

He had a great day today.  He slept in, hung out and played in the bounce house while I took Maria and Veronica to church.  His family came over to celebrate, and he seemed really happy all day.  At one point, Maria and Charlie (pictured) and Veronica and Maddy played in the pool and with the hose and Anthony really got into it.  It makes my heart SING when I see him having fun and enjoying his life.  I wish it happened more often, but maybe it is often enough, for him.

Mike mentioned this weekend that he thinks a lot of the time, Anthony wants to be alone.  He'll be in a room and we'll come in and he'll leave.  I think he DOES probably want to be alone, but not 100 percent.  I think for some people with autism, and definitely for Anthony, if he is alone, there can't be any surprises from other people.  If he is alone, he only has to hear the sounds that he makes, and no one can sneak up on him.   But I think it's important to force ourselves on him sometimes, in the safest and best way for him.  I feel like we can't let him be alone whenever he wants because I feel like maybe then he'll go into his own world so far that we won't be able to get to him back.  It might not be true, but that's what I worry about.

Anyways, he was happy today, happy and sweet and seemed to like the attention when we had his cake and when the girls were playing at the pool.  I went in with him tonight and we chatted and I told him that he has school tomorrow, that we love him and that we'll do anything for him and that he's always safe with us.  I tell him that as much as possible, so that in case he ever gets stressed out or he can't think or he worries, maybe that will be the first thing that comes to his mind.

In any case, I want to publicly say happy birthday to our sweet boy, we love him so.

Hives

 So now Anthony has hives, it's always something, right?  He started busting out in them today at school at 9:00, so they gave him Benadryl and then it got worse by 2:00 so I called and he saw the doctor this afternoon and he said hives.  I said maybe it's pressure hives from the braces and the doctor said NO but I say BS and I bet that's what it is.  The doctor said hives are very mysterious to which I said BIG SURPRISE.  We're so mysterious, it's like AGATHA CHRISTIE all the time around here!

My internet friend Bonnie reposted my last post about Anthony and my … my, what, my own personal disappointments.  She said she often feels that way but is afraid to say it or that it might offend someone or something and I … I hope no one is offended that someties I feel super sad about Anthony.  I feel super sad about Maria sometimes too, and Veronica and I have MAJOR disappointments about how Felicity's first six months went, but what the heck?  I am just a human being, I am CONSTANTLY reviewing my life, and what I've done and what I could do better.  It keeps me young, this constant thinking and reviewing and wondering about the future and the past, ha!  Anyways, I hope it wasn't offensive for me to say that sometimes it occurs to me that we are not the same as other people, and that I am sad at what we're missing, or what I PERCEIVE as us missing.  I could be wrong.  It's only sometimes that I feel that way, anyway.  My mom wrote me a really nice email after I posted that last thing and she said that all we can do is trust in God and know that we're right where we should be and I agree.  But even though I DO trust in God and I DO think I am right where I should be, it's still - it still smarts, sometimes.  I think it's because Anthony is turning seven here soon.  That seems SO much older, right, than five?  Than six?  Anyway, as usual, I am being selfish, Anthony is just FINE, he doesn't care that he doesn't go to ball games or whatever the heck.  He does care that he is all itchy, so that's what we're working on tonight.

I bought him some Benadryl but he sounds pretty happy up there so we're going to wait and see.  His doctor said it might make him sleepy and I said ho ho ho not much makes old Anthony sleepy!

Here's something funny - yesterday I had to go to work at 5:30 so I took a shower before I went to get Anthony but I didn't get to straighten my hair, I figured I'd let it air dry and then straighten it once I got home from getting Anthony.  So anyways, it was super curly when I picked him up and he could NOT keep his hands off it.  While I was strapping him in his car seat, he kept patting my hair.  I just know he could tell the difference, and I was impressed.  Unfortunately, I look like a crazed lunatic Ronald McDonald with my hair curly, so I can't wear it like that all the time, but still!  What attention to detail, right?

He is doing okay with potty training, he has had some accidents but also brought his therapist to the bathroom and gone several times at school, sooooo it's a spiral, I guess.  Just like every other thing, ever.

We bought him a bounce house!  It was like almost $300 but it was going to be $155 to rent it so I figured what the heck, I am working some extra shifts and we just bought it.  I asked my mom and sister and Mike's mom to go in on it.  I figure it's a win-win, because he's impossible to buy for and this way we can all give him a gift that we know (or feel strongly) that he'll love.  I'll take a picture when we get it, hopefully with some happy children bouncing around in it.

Lastly, isn't he so cute in that picture?  He's a real dreamboat.  

My heart is like a liver

My heart is NOT like a liver, but I wish it was because then it could regenerate when it gets too knicked up.  I used to really enjoy summer and I used to really enjoy Facebook.  I used to really enjoy baseball but all those things are sort of killing me right now.  Here's why:

It is the end of the school year and along with all the claptrapping going on about where is the little boy I carried, how can they be leaving preschool/kindergarten/high school/grad school/whatever the hell, some of my friends who have kids Anthony's age are putting up pictures of their kids and saying "last day of First Grade!" and "onto Second Grade!" and there are these adorable SEVEN year old kids, who played with Anthony when he was a baby, and they are so big and cute and smart looking, and NORMAL and I think, he will never have a first day of Kindergarten.  He will never be promoted from first grade to second grade.  And it kills me, a little, it takes one chip out of my heart at a time.

Mike and I were at the baseball game last week, a day game, and there were so many dads there with their sons, they all seemed to be Anthony's age.  I guess maybe seven is an age where you are interested enough in baseball that you go, but maybe you're not old enough that you'd be there with a bunch of friends.  It seemed like everywhere I looked, there was a Dad with his son and I was crying behind my sunglasses, thinking we'll never do that.  Anthony will never do that, at least not this summer.  And Mike really likes baseball and he is such a good dad that he would take Anthony to games, I know it.  Instead we are talking about trying to go to a game this summer, and planning how we'll sit out in the lawn and we'll each be assigned one kid to chase after and I'm just guessing but we'll probably leave early.

I know it won't always be like this.  I know that people with typical kids have their own problems.  I know that Anthony is right where he should be and so are we, but sometimes, it's hard to take and I worry that there will be too many chips out of my heart and ... ugh.  I hate summer, Facebook and baseball, is what I'm saying.

Catching up

Anthony's been busy - he got his orthotics, broke his orthotics, and got them back again.  We've started toilet training - not exactly back at the beginning, but we've gone back a few steps.  He has had some successes, and some accidents.  His program manager emailed me yesterday, though, and said that in the morning in between bathroom visits, he took his therapist's hand and pulled her to the bathroom, where he peed mightily.  Ha, I wanted to say he emptied his bladder but it sounds so scientific, but peed mightily sounds crazy too!  Anyways, that's a very good sign and gives me hope that some day it might all work.  We have been having the hardest time on Thursdays.  He goes to swimming and he likes it so much, but he drinks a lot of pool water during his 45 minutes lesson and then he almost always has an accident on the way home and last night, he not only had an accident on the way home but he peed again before we got him up to the bath, sheesh.  So we are working on it but I am hopeful.  I am determined for him to be toilet trained, I know he can do it.  It just might take a year, is all.  

He has these new orthotics and that is taking some getting used to.  He is supposed to break them in gradually, and wear them for a few hours in the morning and in the afternoon, but the first afternoon he broke the velcro on them.  They fixed it this week but man, he doesn't seem to like them.  We bought him some new shoes, that are his size but extra wide and they seem to be working well.  He got home yesterday from school and was FREAKING out about them, crying and dragging Mike's hand down to them until he took them off.  SO.  That stinks, right?  It will get better, I'm sure.  I'm sure his muscles are sore and hopefully that will get better, too.

Mike and I went to Pittsburgh this week for a few days.  We left Tuesday morning after taking everyone to school.  We went to a Mets v. Pirates game that night, ate at Jerome Bettis' restaurant, which was good.  We shared pierogies for an appetizer and I had a grilled chicken sandwich and Mike had a burger.  We went to a place called Finnegan's Wake after for a few beers but it was really empty once the game was over.  Pittsburgh is weird like that, that city shuts down earlier than any city I know!  It's like the opposite of the city that never sleeps.  Wednesday we had breakfast in the hotel, which featured BREAKFAST pierogies, which were amazingly delicious.  We went to the Warhol Museum, which was super interesting, and then we went to have drinks before the ballgame, which was at 12:30.  It was packed at the ballpark, lots of kids' groups, but it was a beautiful day and we had good seats and the Mets won again, so that was good.  We had a nap after the game and then went to Station Square, a cute area of town just a few stops on the train away.  We went to a Houlihan's that had the craziest happy hour - everything was half price!  Everything!  So we had some apps and some drinks and then we went on the incline up on Mt. Washington and we walked around up there for a while.  Then we went back and got some room service, a fruit and cheeseboard and some *bananas foster pierogies*, which were amazing.  We went to sleep before 10 and I woke straight up at 5:00, because apparently I can't sleep more than seven hours in a row anymore, but it was fine, I went and exercised before we had breakfast (more of those damned pierogies) and we came home.  It was great to see the kids, my parents stayed with them and everyone was really good.  Anthony was as sweet as ever when he got home and then he had swimming last night, which always makes him happy.

I'm sorry for the travelogue, but where else can I say it?  As it is, it is taking me nine years to type this.  Mike is home today and the baby is sleeping but Maria and Veronica are so up in my grill I can barely breathe.  I'd think maybe it's because we went away but they are alway like this.  I'm sure some day I'll miss it and blah blah blah but right now it's annoying.

Which brings me to my next point.  I said the other day on Twitter that I found motherhood on the internet to be like this:  I do it this way and you should too.  I am obsessed with _____, therefore I am an expert on ______.  I am better than you.  I think that's how some people on the internet can be and we are always talking about it, were people always this smug and the internet just gives them a chance to really smug it up?  Or does the internet make people seem smug, or make them actually BE smug?  I really don't know.  A friend of mine was saying she sees it entirely differently, she thinks that's what experts are, people who are obsessed with things.  She thinks if you read the blog of a mommy, a mommyblog, if you will, you are there to learn from the person who's writing the blog.  I don't know.  I disagree, HEARTILY.  After all, I am a mother, and I have a blog or four, but I don't expect anyone to do what I say.  I am not an expert on autism, or children, or even having four children, or being married to an attorney.  I am only an expert on Anthony, Maria, Veronica, Felicity, and Mike and actually I'm not even that good at Felicity yet!  I am completely thrown by all her ear infections and her need to have formula and her bubble palette or whatever the hell.  But it would make me SO MAD if someone assumes because THEIR baby had ear infections or their baby couldn't nurse, that they can boss me around.  OR if I, say, said that Felicity couldn't nurse and I tried but I couldn't make it work and then some person said that I was WRONG about that, I have to be honest, I'd try to hunt down that person so I could feel the satisfaction of smacking their stupid face.   I think being a mother in particular is so personal and I think everyone that is a mother is trying as hard as they can to do the best they can.  I think about Anthony and how Mike and I are always trying to figure out what's best for him, I have spent hours and hours thinking about it and planning for it and I STILL barely know what I'm doing with him.  It would never occur to me that because I've become an expert (of sorts) on Anthony that I am an expert on someone else's child.  Anyway, it drives me bonkers and I swear I want to quit the whole internet sometimes.

Anyways.  That's what's going on with Anthony and his parents.  :)

Thought

I had a thought last night and I wanted to share it.  We had a long day yesterday, a long dinnertime and bath time.  I took the baby up at like 6:00 and I was STILL up with her at 8:00 and that's a long time to spend with some BABY hitting you in the face and fussing and NOT SLEEPING, especially if you've been with her all ding dang day.  Anyways.  We were tired and we were planning on having taylor ham, egg and cheese sandwiches but we had no eggs so we moved it to tonight and Mike went and got Qdoba while I put the baby to bed.  FINALLY, we were eating and Anthony started crying, really crying, and Mike went up with some pretzels but he was still crying and I felt drawn up the stairs to go to him, so I did.

I went in and I started rubbing his feet and his arches are, of course, incredibly high like mine but they seem even higher because he has stretched his feet out so much.  I was rubbing his feet and looking at his feet because it seemed like maybe his foot was cramping up - like you know how sometimes you can see a charlie horse in your leg, the muscle?  I was looking at his foot for that and I noticed that the bottom of my thumb and palm fit EXACTLY in the arch of his foot.  You know how your hand is as big as your face and your foot fits in your forearm?  It was like that, my hand fits exactly in the right spot on his foot to rub it.  It was an amazing moment, it always is when he finally stops crying, but when I saw how my hand fit right there, I thought I am right where I should be.  I am right where I am supposed to be.

Sunday

Another Sunday down.  Well, not really down, Anthony is still awake and we are watching Mad Men, but for the most part, it's over.  We had a pretty good weekend but that could be because a) Anthony didn't go to church with us and b) I took the girls to a birthday party today and it was just Mike and the baby home together.  But he did okay.  He is so, so loud lately.  He does this crazy-ass laugh here lately, it's SUPER loud, but as Mike said today, it beats the hell out of him crying or melting down.

His toilet training is ROUGH.  I think maybe we should go back to Square One on it but we'll see.  I am getting the paperwork together for his summer camp.  I can't believe it's almost May and then I'll say "next month" if anyone asks me when Anthony will be seven.  SEVEN.

What else.  Lord, he is a sweet thing.  He drives me crazy but I am so wild about him.  He is getting so big, he seems GIANT, especially because of the baby.  We bought a new swingset and by GOD I am going to get it assembled and I hope Anthony likes it.  It has a climbing wall that I think he'll like.

Anyways.  Onward toward, May!  Autism Awareness month so you can all go back to being unaware until next year, Ha!

Siblings

 Here's Anthony with Felicity, the oldest and the youngest - so far!  Ha ha ha boo hoo, just kidding, she will probably remain the youngest.  Anyways, I wanted to post a link to this youtube clip of this nimrod talking at a Ted Talk in San Antonio.  She is the sister of a brother who has autism, and she is deeply, DEEPLY concerned not about him, but about her self and HER childhood and the fact that she was a GLASS CHILD, which is someone that the parents look right through, because, you see, they are so busy with their autistic child. 

I don't agree with her assessment.  She seems determined to be adversely affected by her brother's life.  It makes me worried and sad, of course, that Maria or Veronica or Felicity would ever talk about their lives like this, but mostly I just don't think it would happen to them.  We really and truly love all four of our kids the same and we try hard to give them all what they need.  Maria, at this stage, is by far the neediest.  She is sitting directly to my left right now, drinking my coffee, insisting that she likes it and it's not too hot!  Sheesh! 

But Felicity is pretty needy, too.  She is a baby and she's been so sick that she's needed more time from me and Mike.  Veronica is kind of a needy person too, because guess why?  THEY ARE ALL LITTLE CHILDREN!  Maybe it will get worse later, but I think if we start with loving them and attending to their needs, I don't see where we can go wrong. 

This really makes me think about our lives with Anthony and how lucky we are to have a school for him to go to.  It's hard - yesterday we were at the ER with Felicity and the doctor asked her what grade her brother was in and Maria sort of stumbled, and I said, leading her, Anthony has autism and goes to a special school, and she repeated it.  If we didn't live here, if we couldn't afford his insurance or school, I guess he'd just go to our public school.  Then he'd still be in a different school than they are in, but he wouldn't have as long a day, he'd have more holidays off, he'd be around more.  I don't know if that's worse or better for him OR them but I think he seems happier at school. focused on his work. 

Yesterday his therapist told me that he was silly again all day, but his work was good.  That is bad for us because by "silly" she means that he laughs manaically and behaves crazily but because there is just one person focused on him, he's able to get some work done.  At home, it's a little looser so he's just crazy and not working.  Then I think he gets frustrated and then we all get frustrated.  We are working on it, I always think.  We are trying to keep him in his clothes and trying to keep him going on the potty and trying to keep him happy and, if I'm honestly, mostly just trying to keep him in his clothes. 

This is scattered,I want to post more for Autism Awareness Month but man.  Maria is talking incessantly to me and I can't even think anymore.  At least I am free of the fear that she is a glass frickety fracken child. 

World Autism Day

 I always have a moment of doubt when I put up a picture of anyone in the bath.  I think, is anything showing?  I don't think it is, but I always, always have a second where I worry. 

Autism Awareness.  UGH.  I am AWARE!  I'm amazed at how many people aren't, I guess, considering that the CDC just came out with new numbers that say that 1 in 88 babies born will have it. Is that right?  Or I guess is that kids have it now, that's it.  Because there is a big controversy about why the numbers have gone up.  Some people believe it's an EPIDEMIC because the world is poisoning our kids and some people think only diagnoses have gone up.  I am kind of with the latter group, because here's why:  the group that had the biggest rise in numbers is hispanics, and I think that speaks to diagnosis, right?  They're doing a lot more checking for autism in schools, the average age of diagnosis is like eight or something, so it seems to me that what we're dealing with is a rise in diagnosis.  If you ask me, people have always been complete wierdos and it explains a lot that many of them were on the autism spectrum this whole time. 

But this is not Anthony's autism.  Anthony's autism is .. autismier than a child's autism when they were diagnosed at eight.  When they got through preschool and Kindergarten and the first few grades.  When they are toilet trained.  When they have an interest in something, anything.  Anthony is, I guess, severly autistic.  He is LOW FUNCTIONING, as people love to talk about.  It makes me so, so sad to type this, because - well, because of two things.  One, it's Monday and we are so tired and wrung out after the weekend, it's hard to be a hopeful person.  And two, sometimes it feels like because he is low functioning and severely autistic NOW that that's how he's always going to be.  I don't feel that way all the time, but if I'm forced to put a name on it, and a feeling on it, that feeling is sometimes hopeless. 

My mom posted a thing the other day on Facebok about how much autistic people cost society and a friend of hers posted "This makes me so grateful".  I was like, uh, what in the who now?  I wanted to post and say "this makes me ... ungrateful?".  What the hell?  I don't really like reading articles about how much people like Anthony *cost society* because that seems like ammunition or something for why they shouldn't exist.  It seems kind of Nazi-ish, to me.  I mean, I know it's not, but man.  Lots of people cost society lots of money, not just people with autism, so I kind of resent putting a number on it.  The idea, of course, is that people like Anthony won't ADD anything to society and I say that's not true.  First of all, who knows?  Anthony could grow up and cure cancer, what the hell do we know?  I hardly think six years old is the time to make a decision about someone's whole future.  Secondly, Anthony goes to school every day where someone is EMPLOYED to work with him.  He has BAZILLIONS of insurance claims every damned month and someone has to process those, that's another person employed because of Anthony and kids like him.  He's getting billion dollar orthotics here soon, that's ANOTHER person working!  Anthony Beck for President!  Ha! 

Anyways, I am aware of autism every ding dang day.  Maria just asked me what I was doing and I said typing about Anthony.  She said "you're typing about his words, because he's doing really great?".  I daresay Anthony is adding to Maria's little society, too.  So shut it, naysayers. 

Haircut

Well this is a big deal, right?  That was a lot of hair we cut off of him yesterday.  Mike and I have been noticing that his hair is kind of tangly again and it's been super hot here so we decided we'd cut it in May and then yesterday morning we just decided to go ahead and do it.  We sat him in Veronica's chair and put the cape on him, he was fine but whiny, tense.  I cut it with scissors and then we used the clippers and then when we were finished he FLIPPED OUT but then he got in the bath and then he seemed better.  I hate to upset him but I think ultimately it will make him feel better.  It's so hard to tell.

He has been doing well at school and not so well at home.  He is unhappier than I would like him to be.  He is also bolting a lot lately.  I think it's a combination of his age and the weather.  I think instinct wise, everyone is a little nuts when the weather gets like this IN MARCH.  The girls are kind of crazy, too.  I mean, it was 81 today and is going to be 83 tomorrow!  Sunday in church he ran away from us, not once but twice and the second time, I thought for sure he was going to run right up on that altar.  I could see him in my mind, breaking some hundred year old statue, sheesh, I was DYING.  Also, to add to the hilarity, I had the baby in the carrier on my chest, but we were both SOAKED because I brought this stupid dud bottle that leaked all over both of us.  She was pressed up against me but I needed her to cover me because I had kind of a wet tshirt situation going on IN CHURCH.  Ay yi yi!  It was crazytown, indeed.

We went to the park on Saturday and we ran into an old therapist of his.  I am friends with her on Facebook, she is super nice and has two little kids herself.  Anyway, she was saying that Anthony was always special to her and he reminded her of Peter Pan, which I thought was so sweet.  I don't think this about all my kids but I do feel like Anthony has a very special way about him, outside of everything else, where you just want to love him.  Ha ha, when he is crawling all over the countertops and knocking stuff down and breaking glasses, I think to myself that he may be difficult to LIKE or to LIVE WITH or to keep a CLEAN HOUSE with, but he is so, so easy to love.  It feels like breathing, to me, loving Anthony.  Anyways.  That's our update on Anthony.

Oh!  I forgot!  He has been driving us mad, MAD, I tell you, with this taking off his pajamas.  We have had a few incidents wherein Mike and I are doing major, MAJOR clean up of his room in the night, and it stinks.  The duct tape that we put around his pajamas just wasn't working anymore and it was super frustrating.  So I googled 'autism, removing pajamas, help' or something and I found these.  They are PERFECT and they weren't expensive at all.  We bought three pair and we might get more.  He is going crazy taking off his clothes on the weekend and when I go to work it's very hard on Mike.  This is funny, actually.  We have a giant window in our living room that looks right out on the street.  I used to have a bassinet filled with stuffed animals right in front of the window and a few times before I moved it up to the baby's room, Anthony has thrown those animals out and gotten in with NO CLOTHES and one time he POOPED in it!  I know it's gross but it's kind of funny because I'm all, Anthony, really?  We have to do it in FRONT OF THE GIANT WINDOW?  Sheesh.

Anyways, the pajamas are working out really well.  The are such a nice light material, I'm much happier with them for summer than the fleece ones anyway and they are snug to his ankles but don't have feet, which I think he prefers.

He has some more outings coming up at school which I'm sure he'll love.  I am signing him up for camp again this week, it will be in July and just one week.  We are moving forward, which is all that matters, I suppose.

Sick

Anthony is sick, and he can't go to the circus today, which was the scheduled field trip at school.  That is the bad news.  The good news is that he is by FAR the healthiest of all four, well, maybe it's a tie between him and Felicity, but he has only thrown up once, yesterday, and nothing since.  Now his sickness is taking the form of sleeping in this morning and being incredibly noisy and fretful about being home from school.

There's a woman who I read on the internet who has twins who are nine months old and one is in the hospital, with RSV and has to have oxygen and she is nursing both, it sounds so horrible and impossible.  I am trying to think of her this week and think of how even though all the kids are sick, they are all here and not in the hospital. I am tired but I'm not as tired as I could be.  We have, overall, been lucky this cold and flu season, but still.  It's a pain!  And he doesn't care about going to the circus, I don't think, but I'm still sad about it.