Tuesday, April 30, 2013

New OT - Evaluation

So Anthony is going to start with a new OT soon, but every time you start with a new therapist (OT is occupational therapist, sorry), they have to do an evaluation and because they are not doctors, they have to have Anthony's doctor sign the prescription for it.  Anyway, they send me a copy of his evaluation and it's so depressing.  I mean, how old will he be, how long will I know all I know, before it doesn't bug me so much that they write this stuff down about him?  It's one thing to live your life, and another thing entirely for people to talk about it, or heaven forbid, write it down.  It feels so different.

Anyways.  It says his tone is hypotonic, which means he has low muscle tone.  That's probably because he doesn't use his body like he should, I guess?  There are 10 "underlying impairments" in which he is "moderately impaired" and just one that he is "severely impaired".  He's severely impaired when it comes to Left Right Discrimination.  There is something funky with his vision, I know, but I will be damned if I can figure out what we'll do about it.

Anyway, he has year long-goals, so that's good.  There are many good things about starting with this new OT.  I really liked her, she's been at OT for 20 years, the office is very close to our house, they have appointments in the evenings, it's one more thing to do with just Anthony.  It will be good but it's hard to read, every time, all the things that they think are wrong with my sweet baby.

Monday, April 29, 2013

Five Things

Okay, I started this on Friday!  I'm determined to do Anthony's Five Things (for Friday) and Maria's and then I'll be caught up.

1.  We went to art class again this week, he has not had a bad time like he did the second week again, but I wouldn't say he loves it.  He doesn't love all that sitting!  This week we took a lot of breaks and jumped up and down.  I have to say something about the art teachers - that is probably not the right title.  They are art teachers but they are also like Master Artists or something so I don't mean anything bad against them but they are Anthony's art teachers and I know that for sure, so that's what I'll say.  Anyway, they are so nice.  I appreciate them so much, they are patient and talented but mostly they are KIND.  The clay teacher always signs to Anthony and even though she never asked if he used signs, she makes the effort and I appreciate it and I bet Anthony does too, even though he maybe doesn't show it, ha!  The art teacher doesn't even blink, really, when we get up and jump around or Anthony tries to drink the paint.  They are so nice and beyond welcoming.  If you know anyone who would benefit from a community type class, you should look it up at Very Special Arts of Indiana.

2.  What else.  Anthony gets a note home every day, saying what he did, how he did toilet wise, if he needs any supplies, etc. Last week one of his therapists said that when he was waving BYE to someone he said "peace out".  Is that possible?  I want to investigate further, I mean I know they don't LIE, but ... peace out?  Anthony?

3.  I hate the movie Forrest Gump. I mean, I hate it a LOT and I really hated the book - Forrest goes to space with a monkey in the book, what the hell?  It's been on a lot lately and I find myself loving it, loving that Forrest Gump.  I love the thought that even though nobody had any faith in him ever being anything, his mother believed in him and he had such a great life.  Ugh, Anthony - making me love FORREST GUMP!

4.  Anthony had such a crappy morning yesterday that we brought the bounce house inside!  It's been cold and or rainy for months and now it's getting warmer but it's so muddy!  So anyway, he liked it, I think.  He still had a not-great day but it was better than it would have been, I bet.

5.  He went swimming at the Monon Center the other day, with school, and he loved it.  She said he went down the slide a lot.  I am hoping this summer to be able to take him to a not super busy Y around here and go to open swim sometime.  He loves it a lot and while I don't wish we had a pool, I am going to try to get him to a not-crowded-and-therefore-complicated pool more often this summer so he can do something he likes.

6.  (BONUS!) He should be starting with a new OT soon.  I am praying he can go on Tuesday nights at 6:00 so it doesn't affect my work schedule but we'll see.  I think it's going to be really good for him, I'll keep you all posted.

Wednesday, April 17, 2013

Thought: What's in a Name?

This week, I read a Signing Time story, written by a woman who was the mother of a son with autism. Her son sounded a lot like Anthony, never much of a talker, everyone said it was because he was so physically sound, such a boy, first born, blah blah blah, etc.  So she had him diagnosed with autism when he was around three and then they started using Signing Time and then he got good at it and then he signed MOMMY and then, finally, her little boy was BACK.  I shared it on Facebook and said that while I love Signing Time and that it's been great for not just Anthony but all the kids, I don't like the myth pervaded around the internet and the world that somehow because your child is not talking to you, indeed not communicating well with you, that he is somehow LOST or GONE.  I feel it is a) not true and b) hurtful to all children who don't communicate well - if you think your child is not there and has to come back because they are not communicating with you, I fear that other people will think that MY son isn't there, and if he isn't there, where is he?  and also c) some kids of parents are really gone and I think it's disingenuous and cruel to act like your child is gone when they are, in fact, RIGHT THERE.  It's up to me, as Anthony's mother and advocate, to figure out a way to communicate with him and to teach him a way to communicate with me.

That teaching takes all kinds of forms - Anthony is working with PECS, he is a ROCK STAR with PECS, to quote his speech and ABA therapists, and before long I have no doubt that he will be using some kind of communication device to use to talk to us.  Sometimes we have to ignore him to teach him what bad communication is.  He is driving us BONKERS with this pulling on us, it is annoying in the immediate way because he is tearing our clothes, breaking my favorite necklace, etc.  But it's also annoying and scary in a less immediate way because of course it worries us.  Anyway, when Anthony has a tantrum or pulls on us or something, we have to ignore him so that he doesn't think that THAT is the way to communicate with us.  It's hard to keep up with and it can be hard to ignore because he is pulling on our clothes and scaring us about our future.  But we persist, and it's getting better, so that's good.

One thing this woman said in her Signing Time story, and something else I see a LOT in Autism circles, is that she wanted her son to call her Mommy.  He had never called her Mommy, she said and then finally he learned how to sign Mommy and he signed it and it was just great, just amazing, how he called her Mommy.  This morning I was taking Maria and Veronica to school and Felicity was sitting in her car seat behind me, kind of moaning, "Mommy.  Mooooommmmmmmyyyyy.  MOOOOOOMMMMMMMMMMYYYYYY!" and I was thinking, ugh, why did I ever want someone to call me Mommy?  No one ever uses it in the sweet way that I imagine they would.  It's always accusatory - Mommy!  Where are my shoes?  MOMMY!  I want a chocolate waffle!  MOMMY!  You forgot to (insert transgression here)!".  I was thinking about this woman who wanted to be called Mommy so badly, and I was thinking of how often I have thought that too, if he could only say Mommy.  If he could only say I love you.

But I think it's folly - I am his mother, he knows it and I know it.  I know he loves me.  He knows I love him, because I say it all the time.  I say I love you, and I'll take care of you, and I'm proud of you, I say everything to him, because I can.  But he can't.  And I was thinking, it's not so much that we want these kids to say Mommy, to say I love you, because we know it.  What we want when we moan about our kids saying Mommy is not so much that we want them to say Mommy, but we want them to be the kind of children who CAN say Mommy.  Anthony can't say Mommy, not easily.  He certainly doesn't seem to be able to call me, to call "Mommy?" if I'm not there, he never could.  I wish SO MUCH that he could do it, even just logistically it would make our lives easier if he had to go to the bathroom and could call me.  Or if he was scared in the night and needed me, and he could say "Mommy!  I am scared and I need you!", that would be great.  But he can't, not right now.  And I just feel like to constantly be going on and on about it is kind of wishing away who he is and I can't do that.  I always think about that book that I read about bright children who talk late, The Einstein Syndrome.  In it, the author says that this little girl who spoke late's first words were "I'm sorry" because for years all she had heard was her parents begging her to talk.  I read that years ago and I swore then that I wouldn't do that, that I wouldn't make Anthony feel bad by asking him to do something he can't do.  It's a tricky proposition, because of course we want Anthony to work hard so that he can learn to communicate and to live in the world, but to want him to use all that energy to say Mommy?  Not, like, ROSEBUD or something, but just Mommy?  When I know and he knows that I'm his mother?  That is some sort of poppycock that I'm not willing to worry about.

Saturday, April 06, 2013

Art Class

Today was Anthony's first art class.  It met last week for the first time, but Mike was sick and the girls and I went to our neighborhood Easter Egg Hunt so this was our first week.  I worked last night and got home at like 1:00 this morning so Mike let me sleep in until after 8:30, which is FOREVER for me.  Then I got up and raced around because St. Vincent de Paul was coming to get a couch and a tv, so I was vacuuming and cleaning the stuff and Mike took Maria and Anthony to go get donuts, because the earth will spin off it's axis if we don't go to that damned Dunkin Donuts every week.  Anyways, they came and got the stuff and Anthony and I offed to the Harrison Center for the Arts, which is where the class is.  We went in and the woman there gave Anthony a nametag (with my last name, I said ha, everyone always said it would be a problem if I didn't change my name!) and then asked if we wanted to start with clay or paint and I said clay.

So.  We went in and the teacher was lovely.  We had some issues, Anthony's braces were bothering him, so I took them off, people always seem sort of surprised that Anthony isn't talking to them or answering their questions.  Damn you, Rainman!, I always think, ha!  Anyways, we made a bowl and I did a lot of it but I tried to do mostly hand over hand work with Antony.  I learned a few things while working with the clay portion of the class.  I should have brought gum because Anthony wanted to put a LOT of clay in his MOUTH.  The kid next to us, who seemed to have zero special needs, kept saying "ewwww!  He is putting that clay in his mouth!".  The teacher assured me it was non-toxic, but it was kind of clay-y and it was making kind of a gray mark around his mouth, ay yi yi.  Once I gave him the gum, it went better.  We moved from the table where we were rolling out the clay to the painting table and we (I) painted it, ahnd over hand with Anthony.  We had a finger print and stars theme, fyi.

The time really did kind of fly by and then we went to the painting part.  The teacher's name was Carrie and she was really nice, super normal and positive.  We were making a landscape and it really came out good but again, I did a lot of it.  So if you look at it from that perspective, I guess, it was kind of bad!  I am a terrible artist but the teacher taught us a lot of different ways to make the sky, the clouds, flowers, etc., using different mediums.  Anthony started to get upset about half way through, so we took a walk to the bathroom - I asked where the bathroom was and they directed me to the mens' room, so after a deep sigh, I just took him in there.  Thanks to God, it was just a regular bathroom with a stall and everything.  Anyways, when we got back I realized he didn't want to go to the bathroom but that he was thirsty.  He was drinking paint out of the little paper cups we were using to make the flowers.  SO the thing I learned in THAT class was that I should bring a bottle of water.

I told Mike - I find it daunting that Anthony is always the most special neediest of all the special needs kids we come across.  It is not mine to say that this Charlie kid didn't have any special needs - he just didn't have any apparent special needs and, like, when Anthony was sort of babbling away, Charlie said "awww, he said his first word!  It's eeeeeeeeeyyyyyaaa!  I don't think Anthony gets his feelings hurt, of course, he just said "eeeeeeeeyyyyaaa!", but it sort of bugs me.

BUT I am happy we went and we will go again. There is no way on God's green EARTH that he can go on his own, but Mike or I can definitely take him and who knows, maybe it will get better every week.  As my nephew Parker always said, you never know.

Wednesday, April 03, 2013


So April is Autism Awareness Month and in years past, I've posted facts about autism, interesting things about our life with Anthony, maybe answers to unspoken questions that friends and family have had, etc.  But this year I don't want to, as usual Facebook and the internet are ruining everything, ha!

AWARENESS ISN'T ENOUGH!, a friend of mine posted.  Autism is a terrible DISEASE, another friend said.  Um, I think awareness is a LOT, I think, and also I don't think autism is a disease.  I mean, I don't think it is a disease because it's NOT a disease.  I hate when people use words to mean what they want them to mean instead of what they actually mean.  I don't like when people call their girlfriends their wives, just because they've dated for a long time.  I don't like when people call their stepchildren their children, I don't like when people call their boyfriend's mother their mother in law - I just like to use words meaning their actual definitions, I think it makes it much easier to communicate.  It's like no one can use similes anymore - instead of saying "she is like a sister to me", they just skip to - she is my sister.  NO SHE'S NOT!  Anyway, my point is, even if you believe that your child's body is filled with JUNK, as some autism moms I see say, or even if YOU think autism is a disease, that doesn't mean it's true, even for you, much less for ME or MY SON.  Grrrr I am annoyed!

This story has been in the news and it's really upsetting.  It's upsetting because I don't understand the police, who are supposed to PROTECT people, being so rough on a person who clearly has Down Syndrome.  I mean, they told him to leave the movie theater but he couldn't and so they knock him to the ground?  How does that happen?  If I didn't have Anthony, I would read that story and be sad about it, I'd think of my cousin Patrick, who has Down Syndrome and who has been around my whole life.  I'd think I hope nothing like that ever happens to Patrick.  But I DO have Anthony and I think, oh no, what would happen if he were ever left alone?  If someone talked to him and he didn't answer?  Maybe he'd even grab them around the neck?  Then maybe they'd shoot him?  And then my head explodes and  I have to stop thinking about it.

So I think awareness might be enough for cops and for teachers and for insurance companies.  I was talking to my brother and sister in law, both of whom have worked in insurance for years, about how scared I was that Anthony's insurance company was going to stop paying for his ABA therapy.  I said what I don't understand is - Anthony sees a doctor, a developmental pediatrician, and the doctor writes a prescription for ABA therapy, and Anthony gets the ABA therapy and the insurance company pays for it.  I don't understand why this would change.  My brother and sister in law said, well, the insurance company might just want to get ANOTHER doctor to make a second opinion if Anthony really needs the therapy and then once THEIR doctor makes a decision, then they'll know if Anthony can still get ABA therapy or if he should go to public and free school.  This makes no sense to me - or rather, it does make sense, in that I think the insurance company doesn't want to pay for Anthony's ABA therapy anymore, and they are trying to find a way to not have to pay it.  My brother said hopefully you get a doctor with morals and I thought how is that possible?  A doctor that is hired by the insurance companies?  Is going to be a moral, upstanding person?  That doesn't compute for me.  I want to find the doctor who wrote us our most recent letter and strangle her, how dare she say that she knows, from reading a report on Anthony, that he will do well in public school?  But because she is unaware of autism and how it affects Anthony's and our lives, she just writes a letter and denies part of our claim and collects her paycheck.  Maybe she does it because she is so moral, but I doubt it.

Anyways.  I am aware of autism and I hope you are too.  The girls have been going to Anthony's school, have I said?  They go on Mondays as positive peer models or something and they are having a high old time.  They have a boyfriend there, the same one, his name is Jeremiah and he has gone there forever, he's maybe Anthony's age or a little younger.  Yesterday Veronica had an incident at school, some kid hit her in the face with a block and I knew right away who it was, even though they don't say.  It's a boy who is - well, he is ROUGH, I see his mother get incident reports a lot.  Nothing like this has ever happened and Veronica is fine so I am not too worried but Veronica told me later that she did NOT like BOYS!  Boys are too LUFF! she said, meaning rough.  I said I thought you guys liked Jeremiah and Maria said "we like all the boys at Anthony's school, even Anthony!".  It's funny to me that I am so worried about him grabbing us and that he'll eventually grab them and Maria thinks that Anthony is so gentle.  I mean, he is, with them, and I hope it lasts forever.  I hope that by going to Anthony's school, the girls are learning a lot about people with autism and that is acceptance, too, right?

I guess I am not a pioneer - I am not a Warrior Mother, I am just a mother.  I want my children to be treated fairly, I want them to get what they need to get through their young lives.  I can't be yelling at people on facebook about how Anthony is diseased, or full of junk, or whatever.  He's not full of junk. He doesn't have a disease.  He is a healthy person who has autism, he can't communicate well, he has major sensory problems, but diseased?  Junk-ridden?  I can't say that because it's not true.  Ha ha ha I have been wondering how to wrap this up and I just thought of something.  I want to say Anthony is not full of junk, but considering how every time Veronica goes to to the bathroom, Mike calls her Rotten Ass, I think maybe SHE is full of junk!  Ha!  She's full of something anyway!