Tonight I was cracking up, thinking how all I really want to talk about, scream about, is the toileting situation. He is doing so well with it at school and doing pretty well here at home with peeing but the pooping outside, the poo smearing, the constant fear and worry about when the next time he'll poo is awful. So I was cracking up, thinking that the ABCs of Autism should all be about poo. A - that poo thing is a pain in my ASS, B - BOY, do I hate that poo situation, C - The poo is driving me CRAZY, D- DAMN, I am mad about the poo situation, ha ha ha! Anyway, H. High Functioning.
Is he high functioning?, everybody asks, when I say Anthony has autism. Well, not everybody asks it but a lot of people, the majority. He's not, I guess, I always say because he has such a lack of verbal communication but I just looked up the definition and now I'm mad! I don't know what Anthony's IQ is! There is no way that that child could take an IQ test, it's insane to think he could. It burns me up that someone makes a decision about his IQ (that it's low) when there is now way he could take an IQ test. That seems like less of a problem that Anthony has than that the stupid TEST has, if not everybody could take it. Anyway. When you have a child with autism, you can expect that question a lot, so I guess we should know what it means.
So here's the characterization, off of Wikipedia, which is not always right but it seems right in this case:
High-functioning autism is characterized by features very similar to those of Asperger syndrome. The defining characteristic most widely recognized by current psychologists and doctors is a significant delay in the development of early speech and language skills before the age of 3 years.[2] The diagnosis criteria of Asperger syndrome exclude a general language delay.[4]
Anthony definitely doesn't have Asperger's syndrome, he has a severe language delay. He is eight years old and he has barely any words anymore, although he is tricksy, as Maria would say, because sometimes he'll want a cracker and say CRACKER, as clear as a bell. Sometimes he has to go potty and he'll say POTTY. Who the hell knows but he definitely has a language delay, he had it before he was three and he certainly has it now.
Sometimes I get down about our situation, about Anthony's situation, because he is not HIGH FUNCTIONING, or whatever. But then I see a story like this, about this girl, and she is obviously a genius. I mean, she still has autism, but she is so smart and sensitive, she just can't communicate like everyone else. And even though she might have to live with her parents and maybe she won't have a regular job or whatever, what a gift she is giving to people, to parents like me, and to everyone who thought they knew what it meant when someone had autism and was non verbal. When I see something like this video, I think there must be so much inside Anthony, so much, and it's my job and Mike's and his therapists and teachers and all of us, to figure out what it is and how we can get it the hell out of there.
Most days I feel like I am up to that challenge, so I have to just figure a way to push through the days that I don't feel like I can do it. We have to keep pushing and trying to make him not *high functioning* according to some random definition, but actually high functioning, in the world, so he can function and have his best life. Here's to Hoping!
Thursday, August 29, 2013
ABC's of Autism - G
G. God. Grade School? Gut? Anthony doesn't have any problems with his gut. Nor does he ever have seizures, although there was a time where his daily meltdowns were so horrible and terrible that I thought maybe he was having a seizure. He wasn't. I have read a lot about 'leaky gut syndrome' or whatever the hell and Anthony doesn't have it, I don't even know if I believe in it, so I guess that's not what I should talk about for G.
I guess if Anthony were in Grade School, he'd be in the third grade. When I was in third grade, I knew a lot of stuff! I knew that busy was spelled with a z and nickel was spelled nickel, even though I got both those words wrong on a spelling test in third grade. My teacher, who I'll call Miss O'Connell, because that was her name, said busy had a z and nickel was nickle. I do not even know. Anyway, I had been a cheerleader for a few years, I knew how to spell, and I had a lot of friends.
I think maybe Anthony knows how to spell, but he doesn't get an education like that at his school. His rotten insurance company wants him to cut his ABA therapy by half in the next few months and take advantage of his free and public education and I guess we will have to do that, probably. I want to talk about I for Insurance, so I don't want to say too much but Mike pointed out that maybe grade school would be good for Anthony. He said if we want him to communicate with us via typing, some day, maybe he should learn his letters! As usual, it's a good point from Mike. It's hard for me, I am really scared about sending him off to school, a school that is possibly full of bad teachers and mean students. I mean, I'm sure it's NOT and they're NOT but just the thought of sending him off like that, what will he think? Where will he think his therapists are? It's hard. I hope that we can get some time, time for him to use his iPad better and communicate better so we can tell him about school and he can tell us what he thinks about it.
It's hard, at the beginning of the school year. I see all these friends on Facebook whose kids are the same age as Anthony, whose kids are starting third grade, playing soccer, etc. It makes me happy to have Maria in school, to finally feel like I am a parent to a kid who is starting kindergarten, etc., but it still stings a little. I am in a constant state of grieving and also wonder. No wonder I'm crazy!
I have been falling off a little bit, doing these. Felicity is driving me mad, she is awake now from a short nap and will probably be a grump all day. I would have thought I did my penance with grumpy children, but apparently I STILL HAVE A LOT TO LEARN. Anyway, on to H, next time.
I guess if Anthony were in Grade School, he'd be in the third grade. When I was in third grade, I knew a lot of stuff! I knew that busy was spelled with a z and nickel was spelled nickel, even though I got both those words wrong on a spelling test in third grade. My teacher, who I'll call Miss O'Connell, because that was her name, said busy had a z and nickel was nickle. I do not even know. Anyway, I had been a cheerleader for a few years, I knew how to spell, and I had a lot of friends.
I think maybe Anthony knows how to spell, but he doesn't get an education like that at his school. His rotten insurance company wants him to cut his ABA therapy by half in the next few months and take advantage of his free and public education and I guess we will have to do that, probably. I want to talk about I for Insurance, so I don't want to say too much but Mike pointed out that maybe grade school would be good for Anthony. He said if we want him to communicate with us via typing, some day, maybe he should learn his letters! As usual, it's a good point from Mike. It's hard for me, I am really scared about sending him off to school, a school that is possibly full of bad teachers and mean students. I mean, I'm sure it's NOT and they're NOT but just the thought of sending him off like that, what will he think? Where will he think his therapists are? It's hard. I hope that we can get some time, time for him to use his iPad better and communicate better so we can tell him about school and he can tell us what he thinks about it.
It's hard, at the beginning of the school year. I see all these friends on Facebook whose kids are the same age as Anthony, whose kids are starting third grade, playing soccer, etc. It makes me happy to have Maria in school, to finally feel like I am a parent to a kid who is starting kindergarten, etc., but it still stings a little. I am in a constant state of grieving and also wonder. No wonder I'm crazy!
I have been falling off a little bit, doing these. Felicity is driving me mad, she is awake now from a short nap and will probably be a grump all day. I would have thought I did my penance with grumpy children, but apparently I STILL HAVE A LOT TO LEARN. Anyway, on to H, next time.
Sunday, August 25, 2013
ABCs of Autism - F
F. First-born. Anthony is our first born baby, our first son, our first. Mike and I got married July 31, 2004 and Anthony was born June 10, 2005, so we were new at being married AND new at being parents when Anthony was born. The other night, Mike and I were talking about it, when he was a baby. I can't remember why, but Mike said that he thought no matter what, it was all uphill (meaning better - this is always confusing to me) from the beginning, raising kids, because it was so, so hard in the beginning with Anthony.
I remember the night that I went into labor, Mike and I walked over to have dinner near the downtown mall. We had dinner and then stopped at a bookstore in the mall and I bought Harvey Karp's The Happiest Baby on the Block book. I had seen him on The View that spring, like when I was home from work for Spring Break or something. I used to laugh ruefully when I thought how lucky it was that I bought that book the night before I had Anthony. If I hadn't, where would I have been? He was so, so ... I hesitate to call him awful but he was AWFUL. He was yelling so much in the operating room where he was born, this nurse said to him while he was cleaning him off, 'you're just mad at everyone, aren't you?'. It was awful, he never slept, he nursed so much and for so long and I was all chewed up and everyone and their brother said what a GOOD nurser he was and I'd think, how can this be good? I have never been so scared. Seriously, no matter what happened to us after that first week, where I never slept and I was so terrified, it was better than that first week. So that ended up to be good news, anyway.
Also because he was my first born, I didn't get him into early intervention as soon as I should have. I am not mad at myself, but I do feel like kind of a dope. I did ask his doctor at every visit and he'd say, he's so smart, keep reading to him and keep talking to him and he'll be fine. Mike saw our pediatrician after Anthony was diagnosed and he told Mike that it never occurred to him that he had Autism. He said his idea of someone with autism was that they were so negative and that Anthony was such a positive person, he just never thought that could be it.
If I could do it over, I'd just call First Steps, our early intervention in Indiana, by myself and not wait for a reference. I thought I had to get permission or something, but I was wrong. I am not too mad at myself, like I say, and I don't think it's messed up Anthony terrible that I was six months or one year later than I should have been but if I could do it over again, as I say. I'd do it differently.
Everyone said, he's such a boy! He's so physical! He's so smart, he's fine! Everyone told me about other kids who didn't talk, Einstein, their own child, their neighbor's child, their cousin's sister's brother's husband's child, blah blah blah on and on. Ever since Anthony has been diagnosed, a lot of people ask me about their own kids, or a friend's kid or something and I always say this - I think the difference between Anthony's delay, a delay that indicated autism, and a regular old delay, is joint attention. I remember Mike saying that every kid he knew would look up and point if a plane flew overhead and Anthony never did. He could not follow directions. One time my sister Laura was over and I asked him to hand me a bag of chips, he had it in his hand, and we were laughing because he just WOULD NOT do it, it seemed so crazy. Now, of course, I realize that he seriously couldn't do it. I bet he could now, actually, but there were years where he could just not follow a simple one step direction.
My advice would be like this, if you think there is a possible delay or something to worry about, call early intervention. In Indiana, you just have to google First Steps, but if you google early intervention in any state, you should be able to easily contact someone. It takes a while to get started, especially now that no one has any money, but whatever - it is worth it. As I tell everyone who asks me, just call, have them come out, the worst they can do is tell you there is nothing to worry about and maybe you wasted your time. If there is a problem, I tell them, then it's good news because all it's doing is making you right and starting you on the path where you need to be. It's not like if you never call for an evaluation, it's going to make your child not have a delay, it doesn't make it go away or anything.
I'm proud of Anthony every day, I'm glad he is my first born son. All I've ever done with him is what every mother does, right? I've done the best that I can, and I continue to. I do always get nervous when the subsequent children around around 18 months old, I'm always scared that they are not going to talk (which, I mean, has ended up to be ridiculous, especially with Maria and Veronica), but except for that peccadillo I think we are fine. Anthony is my first born, my first of FOUR kids (which I still can't believe more than half the time), but those girls love him so much - he is the luckiest big brother I know.
I remember the night that I went into labor, Mike and I walked over to have dinner near the downtown mall. We had dinner and then stopped at a bookstore in the mall and I bought Harvey Karp's The Happiest Baby on the Block book. I had seen him on The View that spring, like when I was home from work for Spring Break or something. I used to laugh ruefully when I thought how lucky it was that I bought that book the night before I had Anthony. If I hadn't, where would I have been? He was so, so ... I hesitate to call him awful but he was AWFUL. He was yelling so much in the operating room where he was born, this nurse said to him while he was cleaning him off, 'you're just mad at everyone, aren't you?'. It was awful, he never slept, he nursed so much and for so long and I was all chewed up and everyone and their brother said what a GOOD nurser he was and I'd think, how can this be good? I have never been so scared. Seriously, no matter what happened to us after that first week, where I never slept and I was so terrified, it was better than that first week. So that ended up to be good news, anyway.
Also because he was my first born, I didn't get him into early intervention as soon as I should have. I am not mad at myself, but I do feel like kind of a dope. I did ask his doctor at every visit and he'd say, he's so smart, keep reading to him and keep talking to him and he'll be fine. Mike saw our pediatrician after Anthony was diagnosed and he told Mike that it never occurred to him that he had Autism. He said his idea of someone with autism was that they were so negative and that Anthony was such a positive person, he just never thought that could be it.
If I could do it over, I'd just call First Steps, our early intervention in Indiana, by myself and not wait for a reference. I thought I had to get permission or something, but I was wrong. I am not too mad at myself, like I say, and I don't think it's messed up Anthony terrible that I was six months or one year later than I should have been but if I could do it over again, as I say. I'd do it differently.
Everyone said, he's such a boy! He's so physical! He's so smart, he's fine! Everyone told me about other kids who didn't talk, Einstein, their own child, their neighbor's child, their cousin's sister's brother's husband's child, blah blah blah on and on. Ever since Anthony has been diagnosed, a lot of people ask me about their own kids, or a friend's kid or something and I always say this - I think the difference between Anthony's delay, a delay that indicated autism, and a regular old delay, is joint attention. I remember Mike saying that every kid he knew would look up and point if a plane flew overhead and Anthony never did. He could not follow directions. One time my sister Laura was over and I asked him to hand me a bag of chips, he had it in his hand, and we were laughing because he just WOULD NOT do it, it seemed so crazy. Now, of course, I realize that he seriously couldn't do it. I bet he could now, actually, but there were years where he could just not follow a simple one step direction.
My advice would be like this, if you think there is a possible delay or something to worry about, call early intervention. In Indiana, you just have to google First Steps, but if you google early intervention in any state, you should be able to easily contact someone. It takes a while to get started, especially now that no one has any money, but whatever - it is worth it. As I tell everyone who asks me, just call, have them come out, the worst they can do is tell you there is nothing to worry about and maybe you wasted your time. If there is a problem, I tell them, then it's good news because all it's doing is making you right and starting you on the path where you need to be. It's not like if you never call for an evaluation, it's going to make your child not have a delay, it doesn't make it go away or anything.
I'm proud of Anthony every day, I'm glad he is my first born son. All I've ever done with him is what every mother does, right? I've done the best that I can, and I continue to. I do always get nervous when the subsequent children around around 18 months old, I'm always scared that they are not going to talk (which, I mean, has ended up to be ridiculous, especially with Maria and Veronica), but except for that peccadillo I think we are fine. Anthony is my first born, my first of FOUR kids (which I still can't believe more than half the time), but those girls love him so much - he is the luckiest big brother I know.
Saturday, August 24, 2013
Interrupting the ABC's
Anthony's speech therapist sent me this short video of him working with the iPad yesterday. He has worked with it for like HOURS at this point, he's doing so, so well. She pointed out that even though he didn't have to press the "I want" button the second time, because it was already on the top line, he did it exactly right. It's so dumb but I love to hear that voice! It's not even his, I am crazy!
Thursday, August 22, 2013
ABC's of Autism - E
E. Eeeeeee. E. What to write about for E. How about expert?
I find there really are no experts when it comes to autism. I mean, there may be experts in the FIELD of autism, or in sensory issues, or ABA, or occupational therapy or whatever, but I've never met an expert in autism. I used to say, when Anthony was little, that I didn't know anything about babies but I knew everything about Anthony. I still feel the same way about autism - I don't know (relatively speaking) anything about autism, but I still do know everything about Anthony. I mean, EVERYTHING.
Lately, I have been sort of doubting myself because of this insurance/school question. For a long time, I have been against Anthony going to school, because I think he's not ready. But then - like today, this morning, this happened. Mike and Maria left for school and I was getting EVERYONE ELSE IN TOWN READY (bitter, overworked) and I said to Anthony, okay buddy, let's get your socks and shoe and braces on. This is something Mike always says to him so I was basically just parroting it, kind of planning out loud what I was doing. And I will be DAMNED if Anthony didn't walk over to this big bucket of shoes that we have in the livingroom and get out his braces! This afternoon, Janelle (his morning therapist) was telling me how great his listening was today. She said she'd say things, just off hand, and he'd do them. Then Pam and Daniel (his old time and new afternoon therapist) said how great he was today - he initiated to go to the bathroom four times, once with the IPAD (!), and Daniel said when they called over the PA "Anthony to the front", he got up and headed toward the door.
So I think maybe I do underestimate him, but I feel like I am just trying to protect us from expecting too much and having our hearts broken. I guess this is where the experts would come in handy - because an expert wouldn't care about their heart getting broken! This is why we have to count on people who are not Anthony's mother to get involved. Mike keeps pointing things out to me that would be good about Anthony being in an education setting. If he is supposed to use a typewriter type thing to communicate, he'll have to learn to read! To write! I'm using so many exclamation points because this didn't really occur to me until he said it. Maybe together, Mike and I can work with the experts and that will be our best plan of attack. Because we have to love Anthony enough to do anything for him, but we have to be smart enough, EXPERT enough, to know that if we do everything for him, we are doing just the opposite.
I find there really are no experts when it comes to autism. I mean, there may be experts in the FIELD of autism, or in sensory issues, or ABA, or occupational therapy or whatever, but I've never met an expert in autism. I used to say, when Anthony was little, that I didn't know anything about babies but I knew everything about Anthony. I still feel the same way about autism - I don't know (relatively speaking) anything about autism, but I still do know everything about Anthony. I mean, EVERYTHING.
Lately, I have been sort of doubting myself because of this insurance/school question. For a long time, I have been against Anthony going to school, because I think he's not ready. But then - like today, this morning, this happened. Mike and Maria left for school and I was getting EVERYONE ELSE IN TOWN READY (bitter, overworked) and I said to Anthony, okay buddy, let's get your socks and shoe and braces on. This is something Mike always says to him so I was basically just parroting it, kind of planning out loud what I was doing. And I will be DAMNED if Anthony didn't walk over to this big bucket of shoes that we have in the livingroom and get out his braces! This afternoon, Janelle (his morning therapist) was telling me how great his listening was today. She said she'd say things, just off hand, and he'd do them. Then Pam and Daniel (his old time and new afternoon therapist) said how great he was today - he initiated to go to the bathroom four times, once with the IPAD (!), and Daniel said when they called over the PA "Anthony to the front", he got up and headed toward the door.
So I think maybe I do underestimate him, but I feel like I am just trying to protect us from expecting too much and having our hearts broken. I guess this is where the experts would come in handy - because an expert wouldn't care about their heart getting broken! This is why we have to count on people who are not Anthony's mother to get involved. Mike keeps pointing things out to me that would be good about Anthony being in an education setting. If he is supposed to use a typewriter type thing to communicate, he'll have to learn to read! To write! I'm using so many exclamation points because this didn't really occur to me until he said it. Maybe together, Mike and I can work with the experts and that will be our best plan of attack. Because we have to love Anthony enough to do anything for him, but we have to be smart enough, EXPERT enough, to know that if we do everything for him, we are doing just the opposite.
ABC's of Autism - D
I've talked about Anthony's dog, but I'm going to talk about it again, I am so hopeful about it. Sometimes I think - he is doing so well with the PECS and now the iPad and the program he's using for speech with that, the toilet training has gone well, if slowly, he sleeps pretty well, could it be that we could get a dog and it would help with a lot of other problems? Could that happen for us, could we have that much good luck? Of course, the insurance companies of America are around to remind us that we have some bad luck too, so I guess it will all balance out as usual. I pray every day, several times a day, that we get that dog.
We have filled out an application and it has been accepted by ICAN, the Indiana Canine Assistance Network. We could wait for two years, or it could be as soon as late fall. Once we have a dog assigned to us, or chosen for us, we would have to go to two weeks of training at the Indiana Women's Prison - Mike and I and Anthony would go, I guess, although I don't know about that, I'm not sure what we'd do with the other kids. There's no point in worrying about it until it happens, I guess. Anyway, that is the general rundown of how it would go.
Meanwhile, we wait. Anthony is doing really well, as I said, with PECS and his iPad and his general work at Little Star. We are just plugging away as usual, but sometimes I look on YouTube for good videos about service dogs and autism and I found this one the other day, it's a great story. I know there is a girl at Anthony's school who has a service dog, she and her family got it through a national program, lord lord it's way more expensive than it would be through ICAN, like TEN TIMES as much. But it seems to be working out really great for her and I'm grateful that she has a dog who is there, it's nice for Anthony to be exposed to a dog and for everyone at his therapy center to be familiar with the concept.
Also, I have friends who have kids with autism who are helped from their regular old dogs, and that is an option too. I think you can also go places to have your dog trained to help. There are a lot of options, for us. I think the only option is NOT doing something.
We have filled out an application and it has been accepted by ICAN, the Indiana Canine Assistance Network. We could wait for two years, or it could be as soon as late fall. Once we have a dog assigned to us, or chosen for us, we would have to go to two weeks of training at the Indiana Women's Prison - Mike and I and Anthony would go, I guess, although I don't know about that, I'm not sure what we'd do with the other kids. There's no point in worrying about it until it happens, I guess. Anyway, that is the general rundown of how it would go.
Meanwhile, we wait. Anthony is doing really well, as I said, with PECS and his iPad and his general work at Little Star. We are just plugging away as usual, but sometimes I look on YouTube for good videos about service dogs and autism and I found this one the other day, it's a great story. I know there is a girl at Anthony's school who has a service dog, she and her family got it through a national program, lord lord it's way more expensive than it would be through ICAN, like TEN TIMES as much. But it seems to be working out really great for her and I'm grateful that she has a dog who is there, it's nice for Anthony to be exposed to a dog and for everyone at his therapy center to be familiar with the concept.
Also, I have friends who have kids with autism who are helped from their regular old dogs, and that is an option too. I think you can also go places to have your dog trained to help. There are a lot of options, for us. I think the only option is NOT doing something.
Tuesday, August 20, 2013
ABC's of Autism - C
Oh, I thought of so many words that start with C! Like CRAZY, which I am going, all of the time. Or CRUEL, which is what so many people are to people with autism, which is in this story that I have seen 90,000 times on Facebook, but which I am not reading, because, what is the point? I have seen enough stories on the news, with teachers and teachers assistants doing stuff to kids with autism in the name of security. There was the story where a teacher's assistant attempted to give an autistic child a candy with peanuts, because she knew he was allergic and she thought if he had a reaction, he wouldn't go on the scheduled field trip. Of course, it could have KILLED HIM, too, but I guess she didn't care about that? That's cruel, right? Even if he was *horribly* behaved, we can't go around KILLING badly behaved children! If we could, I would have to put my kids in protective custody, ha! There is another story, where a teacher was suspended but put back in her job, after she put a child in a chair and then tipped the chair over. Ay yi yi, on and on, people are jerks! I know! I don't need to read some letter that some jerk wrote to a neighbor, a family who has a child with autism to know that.
So, anyway, crazy is out, even though I am crazy. I just tried to lay down to do my stupid 100 situps a day in a vain attempt to get in some kind of decent shape and Felicity sat down right on my face and THEN she dove backward and I had to catch her. My face still hurts and I am SICK of these two younger girls! Who in the hell thought it was a good idea for preschool to start WEEKS after regular school? Anyway.
And probably cruel should be out, because maybe we shouldn't have such negativity, right? So how about Community? I have found a nice community of people who know what I am talking about when I talk about Anthony, late toilet training, constant nakedness, ABA therapy, occupational therapy, etc., etc. Mostly I have found that community online, through other blogs and Twitter but who cares? It can be challenging, because just like if you know one child with autism, you know one child with autism, if you know one mom of a child with autism, you know ONE mom of a child with autism, but sometimes it's enough.
So here are some blogs that I read regularly, in no particular order:
Stimeyland, We Go With Him, Fragile X Files, Love That Max (I especially like that this blog does a special needs roundup on Fridays, so you can read a lot of other blogs too). One thing I read right when Anthony was diagnosed was that you should stop reading development books, because they can be really depressing. I have moaned for years about seeing other kids Anthony's age playing soccer, going to school, making their First Communions, etc., it can be *very* difficult. I find it's easier to find some people who are in your same situation and start comparing your lives to theirs! Ha, not really, the devil is comparison, but what I mean is part of reorganizing your standards and expectations is to surround yourself with people who are in the same boat.
And listen. It is hard, with autism, to find people who are like minded, EXACTLY like minded. Some people only want to talk about vaccines, some people love and some people hate that stupid Jenny McCarthy (I fall in that latter category, obviously). But you have to just realize that there are more things you have in common than you don't. Don't be alone, find a community, wherever that is. It ends up to be really, really important.
So, anyway, crazy is out, even though I am crazy. I just tried to lay down to do my stupid 100 situps a day in a vain attempt to get in some kind of decent shape and Felicity sat down right on my face and THEN she dove backward and I had to catch her. My face still hurts and I am SICK of these two younger girls! Who in the hell thought it was a good idea for preschool to start WEEKS after regular school? Anyway.
And probably cruel should be out, because maybe we shouldn't have such negativity, right? So how about Community? I have found a nice community of people who know what I am talking about when I talk about Anthony, late toilet training, constant nakedness, ABA therapy, occupational therapy, etc., etc. Mostly I have found that community online, through other blogs and Twitter but who cares? It can be challenging, because just like if you know one child with autism, you know one child with autism, if you know one mom of a child with autism, you know ONE mom of a child with autism, but sometimes it's enough.
So here are some blogs that I read regularly, in no particular order:
Stimeyland, We Go With Him, Fragile X Files, Love That Max (I especially like that this blog does a special needs roundup on Fridays, so you can read a lot of other blogs too). One thing I read right when Anthony was diagnosed was that you should stop reading development books, because they can be really depressing. I have moaned for years about seeing other kids Anthony's age playing soccer, going to school, making their First Communions, etc., it can be *very* difficult. I find it's easier to find some people who are in your same situation and start comparing your lives to theirs! Ha, not really, the devil is comparison, but what I mean is part of reorganizing your standards and expectations is to surround yourself with people who are in the same boat.
And listen. It is hard, with autism, to find people who are like minded, EXACTLY like minded. Some people only want to talk about vaccines, some people love and some people hate that stupid Jenny McCarthy (I fall in that latter category, obviously). But you have to just realize that there are more things you have in common than you don't. Don't be alone, find a community, wherever that is. It ends up to be really, really important.
Monday, August 19, 2013
ABC's of Autism - B
B. B. Beeeeee. I'm trying to think of what to talk about for B. I sort of want to talk about Bowels but I am kind of saving that talk for P, if you know what I mean and I think that you do. Anyways. B is for Broken, I guess.
When you get an autism diagnosis, you might be tempted to think that your child is broken. Your dreams are broken, for sure, right? I always think about Mike when I see things about kids playing baseball or football or whatever. Mike loves sports and I do too, and I'm sure we had some dreams about Anthony playing sports or being talented in some athletic way.
But even if our dreams of having a son who plays pee wee football are broken, Anthony is not. And if those dreams are broken, I guess maybe they were just the wrong dreams! Anthony has therapists and teachers who love him, and who think he is so smart and wonderful and maybe if he didn't have autism, his teachers would just think he was a regular kid, not the genius that they do. His highs are so, so high, because they are LIFE CHANGING. It's like this - Maria and Veronica are toilet trained, they never have accidents any more, and I never think about it. I don't think they are GENIUSES for figuring out to pee on the toilet, and in fact, I get really mad if they have an accident, I'm like, what the hell? You can't just wake up and get out of bed and go pee? Really I have to change these sheets? But with Anthony, the fact that he just walks into the bathroom and goes is like a MIRACLE, when it happens. Because I know how hard he is working, how hard he has to work, to know that he has to go and get to the bathroom and know what to do from there. When Anthony does it, I have a great appreciation for it and I think he is WONDERFUL for doing it. If he was just a regular eight year old boy, I wouldn't think that. Everything good that he does, every forward step he takes, I think is WONDERFUL! So that's good, that's not something that I'd have if he didn't have autism.
I was talking with a friend from preschool the other day, she said her best friend in the whole world has a son who is starting at our public school, in special ed. He doesn't have autism, this kid, but he has ... is it called mitochondrial disease? I think so, anyway, he has some profound problems, it sounds like. She said the boy's speech therapist told the mom that he would never talk if he's not talking by now and I suppose that might be true, like maybe there is something I don't know, but man. That seems harsh, right? Anyway, I could see how tortured my friend was, she was trying so hard to be a good friend to her friend, the mom of this boy, and she didn't know what to do. It almost made me cry, standing there at the park, talking to her, because it took me right back to when we got Anthony's diagnosis, when we had to put him in developmental preschool, and I remembered how scared we were. It made me think, Mike and I have really come a long way, too. We have adjusted our dreams and hopes for Anthony so that they are not broken dreams, they're just different.
When Anthony was little and screaming his head off at me, and never sleeping, I remember my mom told me you can't pick your baby, and I think about it a lot. You can't, and it's a good thing. If I could pick my baby, maybe I'd pick a firstborn who didn't have autism. Maybe I'd pick a QUIETER and more RESPECTFUL second child! I would CERTAINLY pick kids who sleep better, I'd pick for Felicity to have better adenoids and not a bifid uvula or whatever the hell. But thank God, I am not in charge of every little thing. Because if I could pick my kids, Anthony wouldn't be Anthony, I wouldn't be able to celebrate all our little victories and know how smart and hard working he is. Maria wouldn't be Maria, Veronica wouldn't be Veronica and Felicity wouldn't be Felicity. And where would I be then? I don't even want to know.
When you get an autism diagnosis, you might be tempted to think that your child is broken. Your dreams are broken, for sure, right? I always think about Mike when I see things about kids playing baseball or football or whatever. Mike loves sports and I do too, and I'm sure we had some dreams about Anthony playing sports or being talented in some athletic way.
But even if our dreams of having a son who plays pee wee football are broken, Anthony is not. And if those dreams are broken, I guess maybe they were just the wrong dreams! Anthony has therapists and teachers who love him, and who think he is so smart and wonderful and maybe if he didn't have autism, his teachers would just think he was a regular kid, not the genius that they do. His highs are so, so high, because they are LIFE CHANGING. It's like this - Maria and Veronica are toilet trained, they never have accidents any more, and I never think about it. I don't think they are GENIUSES for figuring out to pee on the toilet, and in fact, I get really mad if they have an accident, I'm like, what the hell? You can't just wake up and get out of bed and go pee? Really I have to change these sheets? But with Anthony, the fact that he just walks into the bathroom and goes is like a MIRACLE, when it happens. Because I know how hard he is working, how hard he has to work, to know that he has to go and get to the bathroom and know what to do from there. When Anthony does it, I have a great appreciation for it and I think he is WONDERFUL for doing it. If he was just a regular eight year old boy, I wouldn't think that. Everything good that he does, every forward step he takes, I think is WONDERFUL! So that's good, that's not something that I'd have if he didn't have autism.
I was talking with a friend from preschool the other day, she said her best friend in the whole world has a son who is starting at our public school, in special ed. He doesn't have autism, this kid, but he has ... is it called mitochondrial disease? I think so, anyway, he has some profound problems, it sounds like. She said the boy's speech therapist told the mom that he would never talk if he's not talking by now and I suppose that might be true, like maybe there is something I don't know, but man. That seems harsh, right? Anyway, I could see how tortured my friend was, she was trying so hard to be a good friend to her friend, the mom of this boy, and she didn't know what to do. It almost made me cry, standing there at the park, talking to her, because it took me right back to when we got Anthony's diagnosis, when we had to put him in developmental preschool, and I remembered how scared we were. It made me think, Mike and I have really come a long way, too. We have adjusted our dreams and hopes for Anthony so that they are not broken dreams, they're just different.
When Anthony was little and screaming his head off at me, and never sleeping, I remember my mom told me you can't pick your baby, and I think about it a lot. You can't, and it's a good thing. If I could pick my baby, maybe I'd pick a firstborn who didn't have autism. Maybe I'd pick a QUIETER and more RESPECTFUL second child! I would CERTAINLY pick kids who sleep better, I'd pick for Felicity to have better adenoids and not a bifid uvula or whatever the hell. But thank God, I am not in charge of every little thing. Because if I could pick my kids, Anthony wouldn't be Anthony, I wouldn't be able to celebrate all our little victories and know how smart and hard working he is. Maria wouldn't be Maria, Veronica wouldn't be Veronica and Felicity wouldn't be Felicity. And where would I be then? I don't even want to know.
Sunday, August 18, 2013
ABC's of Autism - A
Today in church, the priest continued his talk about mystics by quoting the great Catherine of Siena, saying "Be who God meant you to be and you will set the world on fire". And I was thinking, who does God want me to be? I don't know - I mean, I do know. I assume God wants me to be Anthony's mother, Mike's wife, Maria, Veronica, Felicity's mother. Anthony is my first baby and he is definitely the one I will be caring for the longest, he is special needs and high needs and whatever so I guess I am meant to be his mother, but I already knew that. So I was thinking, I guess also maybe I'm meant to be the mother of a child with autism, because I am that too. Today I saw this funny meme on Facebook and it's funny to me, because it's TRUE around here.
Anyway, I had this thought in church. I have a lot of random thoughts in church because if I try not to think too much about what is happening to me, which is usually that Veronica or Maria are picking at me like a mother monkey, picking and picking and sometimes flopping in my lap or sometimes pulling up my clothes to 'see if I have a shirt on underneath my shirt'. So, I was TRYING to concentrate on the homily but it was hard and eventually I was thinking, who does God want me to be? I want to set the world on fire! Anything would be better than this nonsense, being picked at and undressed in public.
So I thought I'd make this list of What I Know About Autism. When Anthony was first diagnosed, I relied a lot on the Internet for camaraderie and I was always grateful to find it. So maybe someone would be searching for some information, some real life information about autism, and maybe I could help them. And maybe then I will be setting the world on fire! We'll see. I'm no Catherine of Siena, I am merely Joanne from Mt. Hope.
So. A. Anthony starts with A, Autism, ABA therapy. I think I'll do ABA therapy. Anthony goes to an ABA therapy center, meaning that he is in ABA therapy. He is prescribed 40 hours per week of ABA therapy by his developmental pediatrician. It's covered by insurance (in our case, although of course the insurance companies (scumbags) do NOT want to cover it but it should be covered by everyone) because it is a Surgeon General approved therapy for kids with autism. Some, but not all, of Anthony's therapists have BCBA degrees. BCBA stands for Board Certified Behavior Analysts. Some of his Program Managers and some Directors at the center are certified as Masters or PhDs, too.
ABA stands for Applied Behavior Analysis, it used to be called Behavior Modification. It is defined as a system of autism treatment (it's used for other treatment but mostly autism) based on behaviorist theories which, simply put, state that behaviors can be taught through a system of rewards and consequences.
Anthony has been going to his therapy center since August? September? I can't remember but let's say August of 2009. I remember because I was pregnant with Veronica when we went in to look at the place and also because she was a screaming MESS the whole way driving home. We lived about 45 minutes away at the time and Oh, LORD It was AWFUL! AWFUL! Anyways, so it's been four years. Before we found about it, Anthony was on the track to go to our local public school. It was fine for developmental preschool but I was really worried about him going there as he got older. He got pulled out of preschool for occupational and speech therapy and I liked that he got that, I liked most of his therapists. But it definitely had a warehouse feel, I felt like they were just pushing kids through school and they would always talk at IEP meetings about how he was entitled to go to school under he turned 21 and then he'd get a certificate or something, you know, NOT a diploma. UGH it was depressing. I'm sure it's not true that the school was just warehousing special ed students, it just really felt that way in the beginning.
Anthony has come a long way, he is nearly toilet trained, he follows directions in a way that he never could before. He has had some wonderful, loving therapists who I think really care about him. They really respond to my questions and requests in a great way at his center. There are only a few cons that I have with his ABA center. One is that it's unbelievably expensive, we couldn't do it without insurance. Mike's employer is self funded (the US government, ha ha boo hoo) so his insurance doesn't cover ABA therapy but Anthony has his own policy and that covers it. Before we knew that would be possible, we were going to have to remortgage the house or get a line of credit or something. The other con is that I am a big believer in acknowledging Anthony's many sensory processing issues and they are not, so much. ABA is science-based, and I feel like they see OT and Anthony's sensory problems as kind of NOT science based. One thing they worry about is the fact that there's no data on whether wearing a pressure vest actually HELPS a child with autism and sensory processing disorder. But I think, as a parent, WHO CARES? If he is happier wearing a pressure vest, if he sleeps better with a weighted blanket, who cares? Why can't we just do it? Anyway. That is my one very small issue with my experience with ABA, but I think I'm like that because Anthony's sensory issues are so profound.
Anyway. So that's A. I am hoping to do a letter a day and be finished in less than four weeks but Lord only knows. I want to post more about Anthony, so much is going on, and maybe this is a good way to do it.
Anyway, I had this thought in church. I have a lot of random thoughts in church because if I try not to think too much about what is happening to me, which is usually that Veronica or Maria are picking at me like a mother monkey, picking and picking and sometimes flopping in my lap or sometimes pulling up my clothes to 'see if I have a shirt on underneath my shirt'. So, I was TRYING to concentrate on the homily but it was hard and eventually I was thinking, who does God want me to be? I want to set the world on fire! Anything would be better than this nonsense, being picked at and undressed in public.
So I thought I'd make this list of What I Know About Autism. When Anthony was first diagnosed, I relied a lot on the Internet for camaraderie and I was always grateful to find it. So maybe someone would be searching for some information, some real life information about autism, and maybe I could help them. And maybe then I will be setting the world on fire! We'll see. I'm no Catherine of Siena, I am merely Joanne from Mt. Hope.
So. A. Anthony starts with A, Autism, ABA therapy. I think I'll do ABA therapy. Anthony goes to an ABA therapy center, meaning that he is in ABA therapy. He is prescribed 40 hours per week of ABA therapy by his developmental pediatrician. It's covered by insurance (in our case, although of course the insurance companies (scumbags) do NOT want to cover it but it should be covered by everyone) because it is a Surgeon General approved therapy for kids with autism. Some, but not all, of Anthony's therapists have BCBA degrees. BCBA stands for Board Certified Behavior Analysts. Some of his Program Managers and some Directors at the center are certified as Masters or PhDs, too.
ABA stands for Applied Behavior Analysis, it used to be called Behavior Modification. It is defined as a system of autism treatment (it's used for other treatment but mostly autism) based on behaviorist theories which, simply put, state that behaviors can be taught through a system of rewards and consequences.
Anthony has been going to his therapy center since August? September? I can't remember but let's say August of 2009. I remember because I was pregnant with Veronica when we went in to look at the place and also because she was a screaming MESS the whole way driving home. We lived about 45 minutes away at the time and Oh, LORD It was AWFUL! AWFUL! Anyways, so it's been four years. Before we found about it, Anthony was on the track to go to our local public school. It was fine for developmental preschool but I was really worried about him going there as he got older. He got pulled out of preschool for occupational and speech therapy and I liked that he got that, I liked most of his therapists. But it definitely had a warehouse feel, I felt like they were just pushing kids through school and they would always talk at IEP meetings about how he was entitled to go to school under he turned 21 and then he'd get a certificate or something, you know, NOT a diploma. UGH it was depressing. I'm sure it's not true that the school was just warehousing special ed students, it just really felt that way in the beginning.
Anthony has come a long way, he is nearly toilet trained, he follows directions in a way that he never could before. He has had some wonderful, loving therapists who I think really care about him. They really respond to my questions and requests in a great way at his center. There are only a few cons that I have with his ABA center. One is that it's unbelievably expensive, we couldn't do it without insurance. Mike's employer is self funded (the US government, ha ha boo hoo) so his insurance doesn't cover ABA therapy but Anthony has his own policy and that covers it. Before we knew that would be possible, we were going to have to remortgage the house or get a line of credit or something. The other con is that I am a big believer in acknowledging Anthony's many sensory processing issues and they are not, so much. ABA is science-based, and I feel like they see OT and Anthony's sensory problems as kind of NOT science based. One thing they worry about is the fact that there's no data on whether wearing a pressure vest actually HELPS a child with autism and sensory processing disorder. But I think, as a parent, WHO CARES? If he is happier wearing a pressure vest, if he sleeps better with a weighted blanket, who cares? Why can't we just do it? Anyway. That is my one very small issue with my experience with ABA, but I think I'm like that because Anthony's sensory issues are so profound.
Anyway. So that's A. I am hoping to do a letter a day and be finished in less than four weeks but Lord only knows. I want to post more about Anthony, so much is going on, and maybe this is a good way to do it.
Tuesday, August 13, 2013
Update
Well, in door/window news, Anthony had a major, major breakthrough today using the iPad and ProLoQuo, which is an assisted communication device, a talking device. The first day his speech therapist showed it to him, he started using it. It's very exciting. I am so hopeful and excited about him, and I swear he seems excited too. Wouldn't it be funny if he were just waiting for us to figure it out so he could talk to us? It's too much to think about, too exciting.
We are making progress on our appeal, talking to the school system, waiting to hear from Anthony's doctor, etc. I am once again bullish for the future.
We are making progress on our appeal, talking to the school system, waiting to hear from Anthony's doctor, etc. I am once again bullish for the future.
Tuesday, August 06, 2013
Insurance
I have been wanting to do this Just Write thing for a while and Im going to try it tonight. The one thing you should know about me is that the damned apostrophe on my keyboard is broken, some KID broke it, and I am MAD but the thought of taking it in to the Apple store makes me want to cry so for now, no apostrophes.
- Anthony had a great day today at school. He had no accidents in the morning, or the afternoon, he wore his braces for most of the day. We came home and got changed and he TRIED to poop on the floor but I caught him and he went on the potty instead. So, um, win? I guess? Then we went to OT and he was upset at first, but she calmed him down by rolling a ball on him as he lay down on the floor. She had to put a lot pressure on his back but he loved it and calmed right down and could focus on what theyre working on, which is scanning and choosing the right object from a group of two or three objects.
- BUT his program manager called me today and said that the Clinical Director, I think thats his title, wanted to meet with both of us, both me and Mike, and when would be a good time for us to both come in. Um, never? I said that Mike would be there tomorrow to drop off Anthony and he could just meet with him then. She asked wasnt there any way that we could both go? I said maybe you better tell me what this is about. I thought maybe they were kicking him out or something. But she said they were just wanted to share with us some information about how Anthonys insurance company, um, didnt want to pay for 40 hours more a week of Anthonys ABA therapy.
- VERY annoying. Even though we take him to see his developmental pediatrician TWICE a year to say that he STILL has autism, even though he does in fact, still have autism, and have it kind of BAD, it doesnt matter. The INSURANCE COMPANY has decided that they no longer want to PAY for Anthony to get the therapy that he is PRESCRIBED by a DOCTOR. I asked his program manager, what of the prescription that his doctor has given? She said the insurance company has a GROUP of EXPERTS, although not MEDICAL DOCTORS, and they would decide. The thing is, they decide for EVERYONE that what they dont need is FORTY HOURS a week of ABA therapy. Isnt that a coincidence?
- They want him to transition to the free and public education that is made available to him. Every time we have met with that school system, they have NEVER indicated that he could go to school twenty hours a week. I had to fight like a NINJA to get him to go to Kindergarten in the morning one time a week, remember? But thats what we are supposed to do. We are supposed to start the transition for Anthony to go to school 20 hours a week and go to Little Star 20 hours a week. How is that supposed to happen? Is he just going to go into the third grade? What about the bathroom? The bus? Are all the doors locked or will he have a one on one person to help him not bolt out of the door and into the street?
- My guess is that there arent any answers for this. We are going to have to go to a million meetings and then what we will end up with is something that is good for exactly NO ONE except the insurance company. We can just keep paying Anthem hundreds of dollars a month and they can just ignore the autism mandate and ignore what Anthony needs and we are just supposed to do what they say.
- I dont even know. And you know what else? Why are we meeting with the RESEARCH AND TRAINING DIRECTOR? Why is he the one with whom we are discussing insurance?
- Why arent they sticking up for us, for Anthony, more? Im afraid its because we dont pay enough. I cant even think about it too much. I have been post phone call for like 9 hours and I am going crazy.
- So I guess Mike will go to the meeting and find out whats what and we will appeal and whatever else. We have two months that he can go full time. TWO MONTHS. I feel like all of this happens with no notice to us. We get letters over holiday weekends, now we have two months to figure this out.
- I cant believe this is supposed to be better for us, for our country. We have insurance - we have insurance as a family, for which we PAY and we have insurance for Anthony, for which we pay, too. What the hell?
- Anyway, just like everything else, Im going to pray on it. I pray that we will not be abandoned but, and this is not for the first time, but its the first time in a while, I feel like its not going to work. I feel like we are all alone.
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