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!