Sunday, September 30, 2012

Isolation and Autism

For some reason, this weekend I have been feeling the isolation that comes with having an autistic child more intensely than usual.  Most of the time, I am okay with being a bit isolated.  I am a bit of a loner, although I have wonderful friends I very much enjoy spending time with, but I enjoy my time alone, too.  I can usually be happy for days if I have enough books to read or some good TV to watch or a game to play.  But lately, I have been thinking about how hard it is to connect with others with the restraints that autism puts on a family.  The kind of interaction that come naturally to most people and families doesn't for us, and I am feeling it more lately.

There's a lot of ways autism isolates.  I'd say the main one is obvious---just how hard it is to take Janey or other autistic kids any place.  We can't take off for a weekend to visit people, we can't get together casually with other families, we can't decide to go out to eat or to a museum or event or even shopping, without figuring out first how Janey will do, if she will tolerate however long it takes to get there, if she will freak out when she gets there, who will be responsible for keeping an eye on her at all, all times, who will hold her hand, what we will do if we need to leave---all that.  Most of the time, we don't even consider such expeditions.  They just are out of the realm of our lives.  We necessarily center our lives around our house, which is fine, most of the time, but it certainly gets closed in feeling now and then.

Also, when you have young kids, the main way you meet friends is through your children.  Your kids go to a friend's house, you take them there or pick them up and talk to the parents, and sometimes, you become friends.  You take your child to the playground, to lessons, to sports, to activities, and you meet people.  With Janey, that doesn't happen.  She doesn't get invited to people's houses.  We can't casually go to the playground.  The activities she can do often cost a great deal of money, which we can't afford.  We take her to school and bring her home.  That is what she does.

Autism also puts a strain on old friendships.  It takes a special kind of friend to understand how autism has changed my life, why I can't be the friend I used to be.  I forget birthdays, I am not there to listen, I can't get together without planning.  I am lucky to have friends that have adapted, but I can't spend the time with them I wish to.

As for couples events, that just doesn't happen.  Tony often gets together with friends from high school.  I have never met most of these people, although they sound great.  If Tony is going out at night, I must stay home with Janey, unless the boys can watch her.  During the school year, that is mostly impossible.  They have tons of homework, or their own activities.  If we are going to be out at all late, we don't feel right leaving Janey home with them either.  So I stay with Janey.

There's also just the exhaustion autism brings.  During the day, when Janey is at school, I either work at home, do housework or nap.  I don't use the time for socializing much, or nothing gets done.  It's very hard to do laundry or on-line work or catch up on night sleep I don't get while Janey is home.

I am very thankful for social media, but I do have to admit it doesn't replace actual getting together with friends.  Last night, I felt frustrated and alone and needing to talk to someone.  That's not the kind of thing I'm going to post on Facebook, or email people about.  I could have called a friend, but it was late.  That would be the case with or without Janey, of course, but I had reached that point due to the isolation that is there all the time.  I felt alone, I think, due to the restrictions on my life that keep me from being able to connect in person with people much.

So do I have a solution or point here?  Not really.  It's just the way it is.  To have friends, you need to be a friend.  We tell that to kids, and that's the problem.  I don't think I am able to be the friend I want to be to people any more, and that is maybe one of the hardest parts of this autism gig.

Saturday, September 29, 2012

Thank you for the music

I've written a lot here about Janey's love of music, but it's very hard to capture it in writing.  It's hard to explain it without seeing and knowing Janey.  It's not really just that she loves music, but that she seems to understand it, to appreciate it, on a level far beyond what she normally understands or appreciates.  She can hear a song once, and months later, ask for it and remember it and get excited when it gets back to a part she really loves.

A recent example was Janey asking over and over for "the angel song".  Well, there are lots of angel songs, especially Christmas ones.  She had also called a song recently that mentioned wings in it an angel song, so I tried playing that, but it wasn't it.  I played a bunch of Christmas songs, even though I like to save them for the season, but they weren't it either, and Janey was getting increasingly upset.  It's hard to see her like that---knowing what she wants, but just not having the words to explain it.  We were spending long periods of time by my computer using iTunes, trying to get the right song.  Finally, one night, she blurted out "And the Angels Sing!"  Somehow, she had remembered the title.  I don't know when she had heard that song.  It was on my playlist, but iTunes showed it hadn't been played.  I played it right away, and the look on Janey's face was one of the most wonderful things I've ever seen.  It was what she had needed to hear.  If you don't know the song, you can hear it here.  It's a beautiful Big Band tune.  We listened together, and when it got to the bridge, Janey started clapping and clapping, and looked close to happy tears.

That's another thing about Janey's love of music---it's very discriminating.  She doesn't like music in general, she likes the music she LIKES.  I think her love of songs is based on both the tone of the voices and the melody.  For example, in my playlist, I have a lot of songs by The Gatlin Brothers, both as a country group and here and there on country gospel albums that have lots of performers.  I don't always recognize them when they come up, but Janey does.  If a song is by them, even if she has never heard it before, she'll get very excited and ask to hear it again.  There is something about them she adores.  But others songs she loves sung by just about anyone, like "Over the Rainbow" or "Keep on the Sunny Side"

I think the most amazing moment with Janey and music was the first time she heard the Hallelujah Chorus from Handel's Messiah.  She suddenly started to clap loudly, the first time she had done that in response to music.  I looked in the back seat (we were driving) and she looked close to tears of happiness, clapping and looked amazed.  If you know the story about King George 2 and how he stood up when he first heard that chorus, you can see why what Janey did gave me chills.

I could be deluding myself about Janey's innate understanding of and appreciation of music, but I don't think so.  As they say, she comes by it naturally.  My mother is a church organist, William a very talented guitar player, and Tony's family has a lot of musicians.  Tony and I are avid listeners, and the house almost always has some music playing.  And from the start, Janey would sing when she couldn't or wouldn't talk.  I think whatever ravaged part of her brain, causing her autism, spared the musical part of her brain.  And like the ABBA song Janey would probably not find musically pleasing, I say thank you for the music, the joy it's bringing.

Wednesday, September 26, 2012

Starting the School Year

Janey is off to a good start to the school year.  That makes me happy, although I do always keep in mind that the start of almost every school year has been good for Janey.  She loves being in school.  I think she hates the summer and the lack of structure almost as much as I do.  But that being said, every year it is a wonderful relief that her love of school still holds, and a tribute to the teachers and staff and students that make school enjoyable for her.

This year she is going to afterschool every day.  That was a hard decision for me, but I'm not sure why.  I kept thinking a GOOD mother would not put her child in afterschool unless she absolutely had to, or if she did, it wouldn't be every day.  However, what I wasn't thinking about is that a good mother also takes into consideration what makes her child happy.  Janey did not like it last year having an inconsistent afterschool schedule, and she never liked the 2 hours before Tony got home on the days she had no afterschool.  When I pick her up this year, she is always extremely happy.  The principal helped me get over my final worries, by saying "Look how happy she is!  This is where she should be after school, if she's that happy!" That helped a lot.  It's all part of the process, realizing that Janey is not my other kids.  She needs more people, more support, more activities than I can always realistically provide at home, with the other duties I have.  So she is happy, and I am happy, getting more work done than usual.

I'm noticing the one time she does fall apart now is right before bedtime.  When she gets tired, like almost everyone, she has trouble holding it together.  I am starting, when that fussy time hits, just quitting all else and lying down with her, and singing and talking and just spending some alone time with her.  Often, she drifts off after a while of that, but if she doesn't, she's at least calmer.

The other day, after a grocery store trip, a Beatles song kept running through my head, the lyrics that say "I have to admit it's getting better,a little better all the time"  It isn't always, but that trip made me see how far she has come.  Once we got in the store, I barely held her hand.  She stayed with me, and the few times she got a little further than I liked, she came right back when I said to.  She picked out a few things she wanted from the shelves (mainly BBQ chips in 2 different sizes) and she hummed to herself and was very cheerful.  When we got to the car, she wanted her chips, but I told her they were for after school (this was before school) and she accepted what I said without a tantrum.  I didn't feel drained or out of it after the trip.  I am sure people looked at Janey, and wondered what was up with her, but I really didn't notice or care.  It's not just her who is progressing, it's me, too.

And so a cheery post for once.  The fall is my favorite time.  It feels like a return to regular life after the summer.  It always gives me hope, as the spring seems to give other people hope.  Janey is growing up, little by little.

Sunday, September 23, 2012

Helping Janey choose

When Janey is given a choice of two options, she almost always picks the second one mentioned.  For example, if you ask her "Do you want McDonalds or Burger King?", she'll say "Burger King", but if you switch the order around, she'll say McDonalds.  I am always looking for ways to help her choose what she really wants.  The method I've found that is easiest to use and seems to work well is the hand choosing method.  It works like this---I'll show Janey my two hands, made into fists, and assign each of them one of the choices.  I'll wave the first hand and say the first choice "McDonalds?" and wave the second hand and say the second choice "Burger King?"  Janey will then point to the hand she wants.  Sometimes she'll say the word too.  And in that situation, she doesn't just pick the second option, for some reason.  It seems like having something physical to touch leads to her making a real choice.

When I was thinking about this, I realized that it's often the case that giving Janey a physical cue works to help her understand.  Sometimes when we get home and it's time to get out of the car, Janey will just sit there.  I'm sure she knows it's time to go in the house, but it seems hard for her to get started.  I can say over and over "time to get out!  Let's go!  Time to go in the house!" and although she understands me, she ignores me.  But if I put out my hand to help her get out, she'll hop right out.  She doesn't need the physical help, she doesn't even hold onto my hand when getting out.  She just needs the physical gesture.  I've noticed I do this a lot without thinking about it.  When I want her to sit, I make a sitting motion.  When I want her attention, I tap her.  When she is not eating, I'll give her the first bite, or put the spoon to her mouth.

I don't really understand why physical prompts or objects help as they do.  I suspect it has something to do with the unique wiring of Janey's brain.  Maybe adding a second pathway to the area that needs to be activated helps.  Maybe showing the two hands emphasizes that there's a choice between two things, in a way words can't.  There is so much I don't get about how Janey thinks.  But if something works, I'll use it, whether I get it or not.

Wednesday, September 19, 2012

Dependents

I am not a very political person.  I don't have passionate political views on most issues, and I try to keep an open mind.  I have good friends on either side of the political divide, and I can see the reasoning behind their differing views.  There are a few issues I generally base my votes on---education and autism.  Not that many politicians directly address autism, but I look at what they say about disability issues in general, or if there's nothing there, other closely related issues.  It's the only way to decide that makes sense to me.  I don't know enough about the economy or foreign affairs or the budget to make a reasoned decision, but I know enough about education and autism to decide fairly well.

That being said, I want to quote my friend Michelle's post on Facebook yesterday (hope you don't mind, Michelle!).  It was on my mind all night.  It was so well said.  Here it is...

One day I'll be dead, and my child will be dependent on the kindness of strangers (taxpayers) to keep her alive. I sincerely hope and pray that society does not cast her aside for being an entitled, freeloading victim. Please put yourself in my shoes for one terrifying moment.

 That got me.  That really got me.  Because that's what it comes down to.  Someday, Janey will be dependent on the kindness of strangers, of those who make the decisions how money is spent.  Baring miracles, Janey will never work at a job that can support her.  She will always be dependent.  This is not her choice.  She would have no idea what being entitled means.  She is no freeloader.  She is the result of the chance we all take when we have children, when we, in fact, just live another day.  None of us know when it will be us that fate decides to disable, or to give a child with disabilities to.

I know there are freeloaders out there.  I know there are those that feel entitled.  But Janey, or indeed our family, are not them.  We most certainly pay taxes.  We get no money from the state or federal government for Janey.  Some day, she might quality for Social Security Disability, and at that point, I will apply for it, but right now, we support her.  And we pay Social Security taxes to support others like her, that are not in a position to support themselves.  And we do so gladly.  No-one likes taxes, but they are the best system devised for making sure there is a safety net for those who need it.

There are always going to be dependents in this society.  Or at least, I hope there will be.  A society that doesn't want any dependents scares me.  There are always going to be those born to need lifelong help.  And I dare say we are all better because of it.  When I see all the children at Janey's school with Down Syndrome, with cerebral palsy, with autism....I see some wonderful, amazing children that bring great joy to those around them.  Do we want a society without those children, without the adults they will one day become?  Do we want a society where there are no dependents?  I hope, for the sake of Janey and all those like her, that we most certainly do not.

Tuesday, September 18, 2012

Crying Morning

Yesterday was Janey's first day of afterschool.  She was playing outside when I went to get her, and was extremely, extremely happy.  She loves running around outside with other kids more than anything else in life, I think.  It was great to see her that happy.  She was initially happy to see me, but when it became apparent that I was there to take her home, she lost it---screamed and cried very loudly.  And she cried all the way home in the car, most of the evening until she went to sleep and most of the morning after she woke up.  I'm very glad she likes school that much, but it's kind of depressing that she reacted quite that strongly to being taken away from it, after being there 8 hours.

This morning at school was tough.  Janey decided in the car she wanted juice, which I didn't have in the car.  We got into the classroom and Janey saw cupcakes, there for someone's birthday, I am sure, and she tried to get one.  I grabbed her away, but not before I think she crushed one or two.  She was not at all happy.  I decided to take her down to get breakfast, as the school district now has universal free breakfast (a WONDERFUL idea, if I might say so as an aside).  However, there was no juice there at first.  Knowing Janey's preferences, they found some for her, thank goodness.  Janey calmed down a small amount, and I took her back to class.  I hope she has a good day.  She probably will, but I'm drained.

I've said it on this blog before, and I'm sure I'll say it again in the future, but crying is the toughest thing for me.  I don't know how to deal with it.  I don't know if there is a way to deal with it.  I don't know how to keep Janey happy.  I don't know if it's possible.  

Now I think I'll have a little morning nap.

Monday, September 17, 2012

Why doesn't Janey talk more?

For some reason, this question was hitting me like a ton of bricks this weekend.  Janey CAN talk.  She can say a lot of things.  She understands speech quite well, at least basic speech.  But her talking is very, very limited.  She uses phrases she's used before almost always.  A unique sentence from her, once analyzed,  almost always turns out to actually be delayed echolalia---something she's heard from a video, song, school, etc.  She learns new words very slowly.  An example is "towel", that I wrote about before---for years, she said "scarf" for "towel".  Now she says towel pretty consistently, but why did that take years, when she can memorize huge chunks of dialogue in seemingly a day?  And why are the sentences she say often so ungrammatical?  For example, they almost always start with "I want" and then use phrases that don't agree or fit, like "I want snuggle on Mama's bed", one of her most said sentences, or "I want go to visit Pino" (her uncle).  Why does she cry sometimes for hours because she can't find a way to tell us the simple thing she wants or what is bothering her?  Why does her speech not progress, despite great speech therapy and being around talkers and going to school?  Why is it so hard for her to answer questions?  Why does she often call people the wrong names, although I'm quite sure she knows their names?  For example, this morning when saying goodbye to me at school, she said "Goodbye, Ms. Janet!" (the name of her speech therapist), and in fact, all weekend almost everyone was called Mr. Janet, even Tony.  It is vanishingly rare she uses William or Freddy's name.  Why does she request things using a question?  The example of that is when she likes a song she hears in the car from my iPod.  She says (frantically) "DO YOU LIKE THAT SONG?"   That means "don't let the song end, replay it fast, I really like it"

There must be something just mixed up in the speech center of her brain, something that makes straightforward speech very tough.  I wish I understood it.  A strange example of the crossed wires or whatever they are was this morning.  She liked a song in the car, and said her usual "do you like that song?" but I was confused as to whether she meant a song that just had ended or one that just started.  She started screaming "Christmas!  Christmas!  Do you like that song?"  I hadn't played any Christmas songs, but I took a guess and played "Living on Love", an Alan Jackson song that has the word "wings" in it.  I think that was it---she's heard "wings" mostly in Christmas songs about angels.  Somehow, instead of the many straightforward ways she could have expressed herself, that was how she did it.

When Janey gets upset, we are trying more and more to encourage her to tell us what is wrong, but sometimes that almost seems mean, because it's so hard for her.  It just doesn't seem to come naturally to her to translate feelings into words.  We give her choices, starting the sentence for her "I am crying because I am...." and she will sometimes plug in "angry" or "sad", but I think those are usually guesses.

Lately she loves Happy Meals, but despite us using that word for them a lot, she asks for them by saying "I want chicken nuggets.  I want French Fries.  I want chocolate milk", breaking down what is in them.  Then we try to get her to say if she wants Burger King or McDonalds, but she will almost always pick whichever we say second in the question.  If she does mention them on her own, it's always "Old McDonalds", from the song.  When she makes an association like that, it's very hard for her to break it.  For example, she usually calls her ABA specialist "Mr. McKen" although his name is Mr. Ken, but both her classroom teachers last year had names that started with "Mc" and I think she came to see that as some kind of teacher preface.    It seems like once she learns a rule, she overgeneralizes it.

Sometimes I feel like if I could break the code that Janey's mind uses for speech, I could teach her things much more easily.  I wish I understood what the speech center of her brain is like.  I daydream often that the Vulcan Mind Meld is real, and I can join minds with her and figure out what goes on inside her brain.  I think it's an interesting and confusing place.

Sunday, September 16, 2012

The Little Mermaid and Journey to Joke-a-Lot

Janey has recently gotten heavily into two full length movies---The Little Mermaid and Care Bears: Journey to Joke-A-Lot. She wants to watch them, one after another, all day long. We of course insist on some annoying other activities in between, and school and sleep and eating and so on get in the way, but I must say she watches them plenty. And like anything show or video or book or song she gets heavily into, she memorizes them. She is always coming up with scraps of dialogue or snippets of song. One of her teachers surprised her by knowing that "Poor Unfortunate Souls" was a song from The Little Mermaid. I'm sure people are sometimes confused, though, by her saying "I've never seen a human this close before!" or "He said the S word!" (which in the Care Bear movie, is "serious"---you can't say serious in Joke-a-Lot.

I try often to figure out why Janey (and other kids with autism) get so consumed by videos. Other kids like videos, but I don't think most kids completely live in them like Janey or her compadres do. I know a lot of it is predictability. She knows what will be said next---it's not like the real world where people can say or do anything out of the blue. It's also music, for Janey---I think she'd love to live in a world of real life musicals, where people burst into song and dance numbers occasionally. But I also think the movies and videos give her a way to understand emotions, and to prepare for them. There are parts of both movies that scare her. When those parts are about to happen, she usually runs over to me and says "Snuggle on Mama's bed!" I've figured out she doesn't really care if I don't get on the bed and snuggle with her. It's just a way of telling me that she is upset. And it's not, in these cases, truly upset. It's an anticipation of being scared, a very controllable one. She seems to be working on a way to deal with the scared emotions.

I try to use the videos to draw her into our regular world. Yesterday at a thrift store I found a Little Mermaid shirt for her. I showed it to her and she was so excited. She often doesn't notice what she is wearing much, but this morning she asked for the shirt (I hadn't washed it yet, but I'm getting right on that!) Other girls like The Little Mermaid (although she's a little out of date with it), so I am thinking it could be a Halloween costume, or a source of toys. It's something she can share with the larger world.

And, if I might be totally frank, it keeps her happy. It can be near impossible to keep Janey happy all day. She is not interested in toys, most of the time, she will listen to me read to her only about a book a day, she doesn't entertain herself at all, except in odd ways like biting on things. So having her watch a movie is a way to keep her mind from completely being off-line in her own world, and it allows us a few minutes to regroup, do some housework, spend a little time with the boys, while still keeping Janey in view. And although I started motherhood as the kind of parent determined TV would play a very small role in my childrens' lives---there would not be time with all our creative block play, read-aloud marathon sessions, art projects and the like---I have been worn down by Janey. If she is happy, I am happy. I doubt many people could take as much as a day with Janey without reaching the same conclusion.

So, Ariel and the gang of Care Bears---live long and prosper.

Saturday, September 15, 2012

Janey's eating---a autism thing or a food snob thing?

Janey's eating comes up every school year at the start of the year. I buy her school lunch, and she doesn't eat it. It seems like kind of a waste of money, but packing her lunch is a waste of money AND time. She eats nothing from the packed lunch, at least anything conventionally "lunch-ish"

Is Janey a picky eater, or an eater with strange tastes? Yes and no. In a lot of ways, she's the least picky of my three kids, and one of the least picky kids I know. She will try almost anything. Her tastes run far and wide. Some of her favorite foods---pesto with basil sauce, crushed tomatoes right out of the jar, salsa on its own, assorted vegetables in a tangy slaw in jars, General Gao's Chicken, fried rice, onions in any shape or form whatsoever, almonds, peanuts right out of the shell, oatmeal, sharp cheeses, the frosting off cupcakes, black raspberry ice cream, oyster crackers, Funonions, almost any kind of chips, strawberry milk, raisins, mayonaise from the jar, soy sauce right from the little packages, duck sauce, French bread---this list could go on for ages. What she doesn't eat is typical school lunch stuff, either packed or from the school---sandwiches, bagels, etc. Or anything not served at the exact temperature she likes---either cold from the fridge or freshly made hot. I think that's the biggest problem with lunches. Packed or from school, they are not cold or hot enough for her.

And that's why it's probably a combination. She's a food snob. We all are in our family, a little, within the limits of our budget. I'll never, ever forget William at age 3, trying some cheese he didn't like and saying "Is this cheese even ITALIAN?" We can get into a debate hours long, and often do, over which pizza place to get pizza from. One of our traditions at Christmas now is a cheese and cracker time, with the very best cheeses and crackers, the kind that the rest of the year you look at in the Whole Foods and say "Who in the world would pay $8 for a small box of crackers or $15 for a little piece of cheese?" The boys prefer that over many presents. Last year's tasting was probably one of the best family times we ever had. And we've spoiled our kids. By that, read TONY has spoiled our kids, and me. He'll often make 5 different dinners, so everyone has their absolute favorite. Janey has learned to gather up the ingredients for some of her favorite dinners and bring them to Tony, to give him the hint. But it's also her autism, in her complete refusal to eat anything that isn't up to her standards, and in her love of foods that are not foods meant to be eaten on their own. We don't let her eat mayonaise out of the jar or drink soy sauce like water, but she sure would. We do let her eat salsa on its own, because what is salsa really but a nice mix of vegetables? But she doesn't eat mainstream foods.

But Janey's teachers and aide and all the wonderful people at her school that worry about her and care for her were upset at how little she was eating during the day. I didn't want to put extra work on them, but they asked me if I could send in some foods Janey likes, for what she won't eat lunch, and I bought a big bag of things from the Shaws. None of them are lunch type foods, really, but now when she won't eat the lunch, she can have some almonds or whole wheat Ritz crackers or raisins. She would like it better if Tony showed up at lunchtime with some freshly made rice with chicken and onions, but that is not practical.

So maybe Janey's food issues are an autism thing, but one of those that is easier for us than it might be because we react to it. It's something I've often thought about. The hardest parts of autism for any family are the parts they don't understand---the parts that don't fit with their particular family dynamics or interests. Janey's food issues fit well with us. She has other traits that might seem like no big deal to another family, but do to us. It's all part of fitting the unusual person that autism creates into a life---fascinating, frustrating, interesting people who have autism.

Sunday, September 9, 2012

Completely weird and out of the blue

Every once in a long time, Janey comes out with something that we have no idea where she got. It doesn't happen a lot, and when it does, it's so odd and out of the blue it doesn't seem real. Today was one of those times. Janey was being a little fussy in the kitchen, next to Tony, and I was in the next room. All of a sudden, she yelled out "I don't want to die!" As we were recovering from that, she said "I don't want Mama to die!" We stood there staring at her, stunned.

I can't remember talking about death in front of her. I don't think she has seen any TV or videos that address death. I had no idea it was a concept she had any, any idea about.

We immediately reassured her, of course. "You aren't going to die. Mama isn't going to die. Daddy and William and Freddy aren't going to die". She stayed on the subject a while, saying "I don't want Freddy to die! I am NOT going to die" I took her to see sleeping Freddy, and awake William, to see they were alive and well. She seems okay now, and hasn't said anything more.

But why? I do remember that both boys had a period of time around when they were eight that they worried about me dying. They said if they were at school and anyone came to the classroom and told something privately to the teacher, they were sure the teacher was being told I was dead. That was a little tough to deal with, but they got over it, and I think maybe it's something that around 8 becomes a worry. But Janey is in no way developmentally eight. She rarely says complete original sentences like that at all. If she does, we can usually figure out where they came from, and they are reworkings of sentences she has heard. But this? Unless there is some very odd stuff being taught at school I'm not aware of, which I seriously doubt, she has not heard much about death.

It's this kind of thing that makes autism so mysterious and hard to figure out. It's these weird little oddities of Janey that keep us guessing. I think I have her figured out, her abilities and moods and worries, and then I find I don't.

So I'll just keep reassuring her that none of us are dying soon. And I'll keep trying to figure out my little girl.

Friday, September 7, 2012

Easy ways to avoid having a child with autism

So you are thinking of having a child, and would like to have one free of autism? Well, you've come to the right place! I've got your easy plan right here! Just follow these instructions and you might well become the lucky parent of the latest autism-free model child!

First of all, you need to make sure you are creating this child with the right person. Take a good hard look at both your pedigrees. Is there anyone with autistic-like tendencies there? Any secret Thomas-the-Tank-Engine lovers? Genetics is one of the possible causes, you know. Assuming that every last one of your ancestors are free from any suspicion of secretly autistic traits, then take a look at the age of the male of your couple. It's a rare case where the woman seems off the hook, but if the male is an older father, it's thought that almost all the new weird genetic mutations that might lead to autism come from his side of the contribution. So you might want to trade him in for a younger model. The other factor you want to check both sides for is the presence of autoimmune disorders, which might play a role in autism. Any diabetes, asthma, arthritis, thyroid disease, lupus, MS, stuff like that? No? All set there? You are ready to get pregnant!

Now there are just a few rules you must follow when pregnant. First of all, don't get sick. Fever during pregnancy is thought to be a culprit. It might be good to isolate yourself all during pregnancy to avoid that. Next, look long and hard at medication you might take. Ask your doctor. Your doctor might say whatever you are taking is just hunky-dory, and then a few years later it's discovered that it isn't. But doctor's orders! So if you take any medication at all, you might want to go back a step and not get pregnant to start with. Avoid being overweight. Avoid getting pre-eclampsia. Avoid being stressed. Avoid getting pregnancy-induced diabetes, or any thyroid problems. Just to be safe, have a picture-perfect pregnancy in all ways.

Now---during the birth. Don't have any birth trauma or lack of oxygen. Don't have your baby prematurely. Hold them right away and let them know how welcome they are. Most people don't believe autism is caused by "refrigerator mothers" subconsciously rejecting their babies anymore, but you know how those things swing back and forth, so avoid ever thinking a single negative thought about the baby.

Now it gets tricky. There's the vaccine question. Science doesn't seem to back up that vaccines or mercury in vaccines cause a problem, but many mothers and blogs and celebrities think it does, so you'll have to decide on that. Make sure the baby doesn't get any infections soon after birth, viral or otherwise. Some people think lately autism is caused by an over-clean environment not teaching the body some early immune responses, so be reasonably casual about germs, but of course, that's subject to change at any point, and if it's later decided dirt causes autism, you'll never forgive yourself. Lack of vitamin D is one theory, so live in a sunny climate. Too much rain could be a problem, so if you get hit with some long rainy spells, move. There's the whole possible diet connection, with lactose and gluten being suspected as problems. Who knows, but why not just never serve any of them to be sure? Early TV could be a problem, so get rid of your set.

And of course, if your child STILL is stubborn enough to show even the slightest autistic trait, you want to nip it in the bud. Have your child screened for autism starting at birth, probably every week will be enough. If you see the slightest sign of it, start ABA about 100 hours a week immediately, until your kid is so normal they could be a model for normalness.

And you know of course this is all very tongue in cheek. I've just been reflecting a lot lately on how the almost daily new ideas about what causes autism must put through the heads of someone determined to do all they can to give their kids a good head start, a nice autism-free life. And the moral is, of course, you can't do that. You could do everything possible known right now, which would result in some crazy doings, and in a few years, it could be determined that everything you thought right was wrong. We just don't know what causes autism. There probably isn't any one thing that causes it. So do what you feel is best. Do what you yourself decide is healthy and reasonable to do. Listen to a good mainstream OB/GYN or pediatrician. Use your own judgement. Don't listen to what bloggers say, including me.

And if, all else failing, you do end up with an autistic child, I'm here to say it's not the end of the world. You aren't a terrible person for somehow not being able to prevent that happening. You are a parent that like many parents from the beginning of time, were dealt a tough hand, but you will deal with it. Your child may not take you to Holland, but they will give you moments of extreme joy along with the hard times. Congratulations on your child, autistic or not.

Thursday, September 6, 2012

First Day of School---2nd grade

It's actually here, that magical first day of school! I can't pretend I'm not thrilled. Partly of course because I get some hours to myself, but also partly because I do love Janey's school so much, and I know she will be happy there. The picture is outside her classroom (her school has a central courtyard) getting ready to go in.

I realized this morning a lack of a feeling I had. I didn't feel one bit nervous or anxious taking Janey to school. I don't think there's ever been a first day of school I didn't have that feeling, and that goes back to my own preschool days. But this is my 13th first day of school taking a child to the Henderson School. It feels very familiar. I've known most of the staff there since they started or my kids started. I can think of only one other parent who has been involved in the school longer than I have currently. For someone like myself, prone to anxiety and a little bit shy with new people, that's a great feeling.

It struck me today what I love most about the school is that it's not just inside the classroom I know Janey will be well taken care of. It's anyplace in the school, from the principal to the secretary to the lunch workers to the teachers in other rooms to the janitor to the older students, and of course in her class too. It's the whole environment. Caring people seem to be drawn to the school, or the school helps people become more caring. I don't know anyplace with a larger ratio of very, very good people---people I literally trust my child's life with.

Janey was eager for school. I think she did get that it was the first day. I spent a lot of yesterday hyping her up---saying "What's tomorrow? Tomorrow is the first day of...." and she would pipe in "SCHOOL!" We had a few tears in the car today, but I think that was more over my music selections than school. We switched to her favorites, and she was happy. Hopefully she is having a good day. But even if it's a tough day, I know she's cared for. Every mother of a child with autism, indeed every mother of ANY child, should be that lucky.

Wednesday, September 5, 2012

Grocery Store Thoughts

Yesterday morning Janey and I went for a quick grocery store run. If you go early in the day, the store is pretty empty and we both still have our energy and haven't fallen apart yet. It wasn't a bad trip, and of course, overthinker that I am, I overthought it all day.

The big thing that I was thinking about is how it's no longer possible in any way to pretend in my head that people think Janey is "normal". She's at least average sized for her age, maybe a little tall, but most of the time at the store, she was making her "AHHHHHHhhhhh" sound. It's a very obviously autistic or otherwise special needs type sound. And it struck me that I wasn't much bothered by that. People did look at her, but I think they looked thinking "there's a kid with special needs shopping" and not "what the heck is wrong with that kid?" and maybe that's because she's older and it's more obvious, or maybe it's a change in my perspective. Maybe I'm getting used to people looking at her and at me.

I was also reflecting on how I actually enjoyed her at the store, the unique way she has of looking at life. It will seem she is noticing nothing around her, but when she gets to an area where there is something she wants, she has laser sight. We got near the milk section, and she ran over to the individual strawberry milk bottles. I was planning on getting a big strawberry milk, but the thrilled look on her face and the excitement she had in putting the little ones in the cart overrode that. It's like that's a part of the store that makes sense to her---like it's all a big whirl of colors and shapes and then---wow! Her favorite thing, sitting right there on the shelf!

The deli was empty, so we got a little deli meat and cheese. The nice deli woman started to ask Janey about school starting soon, but I think she caught on quickly that Janey wasn't going to answer. She was so sweet with Janey---asking me if she would like a piece of cheese or roast beef. Janey isn't into swiss cheese or roast beef, so the lady asked if there was something she would like. I said a piece of salami, if she had one already cut up, but she insisted on cutting a new piece for Janey. I tried to get Janey to say thank you, but she was too busy eating. The woman looked so happy just to have pleased her. Thank you, Shaws deli woman! People like you are wonderful.

Tony takes Janey to that Shaws a lot, and the people there are gradually starting to know her. I'm realizing that is a very, very good thing when it comes to autism. It's like our favorite CVS I take her to a lot. It's making me think about the importance of local stores, of community. I am not a hugely community-oriented person, but I am seeing more and more the truth of that old "It takes a village" saying. The more people that know Janey, that know what she is like and accept her for it, the better.

I left the Shaws feeling very good about life. Some days, I actually feel like I am going to make this whole autism bit work.

Tuesday, September 4, 2012

The Toll on Siblings

I read an article yesterday from The Washington Post about siblings of children with autism (you can read it here), and I was struck by the honesty of the opening section--- a sibling recalling one of the tough moments of life with an autistic brother, and then trying to write the inverse, one of the good moments, and not being able to think of one. That's brave. I think the media subscribes to the same mentally that is taught to us as kids---if something is very tough, you will get rewarded for it. You'll be better off in the long run for having endured it. There are all kinds of hidden compensations. Welcome to Holland for kids. And that's not necessarily the case.

I'll start by saying I do think in some ways, my boys have been enriched by having Janey as a sister. They certainly have compassion for the less able, they have learned responsibility, they feel needed as part of the family unit. And there are those once in a while moments, which they express by taking Tony's and me phrase "Janey's being precious!" They appreciate it when she's being adorable or funny.

But overall, I have to be honest and say that that negatives outweigh the positives. We don't have a normal family life. We can rarely have family outings. We next to never eat out as a family, and we NEVER go as a family to movies, or other such public events. Every single plan must include figuring out what we will do with Janey---can she tolerate it for a few minutes? Who will watch her? Our time is hugely taken up by her. Countless times, the boys need Tony's or my attention and don't get it, or get us saying "Wait till Janey's asleep" They are often called upon to keep an eye on Janey, which is not a casual task---it takes them away from homework, talking with friends, pursuing hobbies. If it's for any extended time, we pay them, but the pay is low for how tough a job it is. We can never, never count on a relaxed family time. It's always dependent on Janey's mood. Our money is limited by the fact one parent must always be there for Janey. There is not a single aspect of our lives that are not affected by Janey's needs.

The article tries to be positive. It says studies show siblings do better in certain situations---in two parent families, when the autistic child is higher functioning or the oldest child, when the family has more money. Those all seem like common sense. I cannot even picture the life of a single parent with an autistic child and a sibling. More money, like it or not, can make almost anything easier. But overall, the article has to admit it's not a Welcome to Holland reality for the sisters and brothers.

And then there's what is hardest to face. Some day, Janey will be William and Freddy's responsibility. They will be responsible at least for making decisions about her, and at most, she might live with them. That's not something I'm forcing on them, that's reality. It's the unspoken truth for many families with a disabled child. They didn't sign up for this. Tony and I did, by having a child. Every time you have a child, you are signing up for whatever you get. I do believe that. It doesn't mean I am going to always be positive about it all, or not rant at times about how unfair it all is. But we chose to have a third child, and she is ours. The boys didn't have a choice.

I wish I had a feel-good conclusion here. I don't. What I am left with is reality. As much as we might believe in the fairy tale idea that it all balances out, that we are all rewarded for our hardships, that we in Holland just are on a different but equal vacation, when it comes to siblings, I don't think that is the case. So I'll just say thanks to William and Freddy. They are amazing boys, incredible boys, doing a wonderful job in life. They are great brothers to Janey. I can't promise them riches or rewards due to that, but I can thank them with all my heart.

Sunday, September 2, 2012

Baby Einstein, Julie Clark and "crucial early years"

Janey is a huge fan of Baby Einstein videos. I am not. She loves the music, the toys, the soothing voices, the silly puppets, the whole bit. She's way past their target age, but of course not developmentally that far past, although somewhat even there. We let her watch them, including some in French I bought by mistake at a yard sale.

In every single Baby Einstein video, the founded of Baby Einstein, Julie Clark, gets on and talks about how great she is. Of course, not literally, but that's the message you get. She has two adorable blond girls, who are on the videos a lot, and she says in her sweetie-sweetie voice essentially that if you use her entire line of products, your child will be perfect. Again, not literally. She actually talks about how they are used to INTERACT with your child. Parents are shown interacting, which mostly seems to be pointing to the TV while a baby stares at it. Sure. Like those parents aren't hurrying into the kitchen to make up a cup of coffee and have 10 minutes to read the paper while the kid is entertained. Or maybe they aren't. Maybe THAT'S why I've got an autistic daughter! And of course that kind of message is the hidden one. You want your kid to be NORMAL, don't you? And not just normal, but BETTER than normal? Here's a shortcut way to do that!

And that gets to something that has been bothering me lately---the whole notion of those "crucial early years" And especially as that concept relates to autism. I see articles all over about how to diagnose autism in very young kids, so you don't miss those early years to work with them and make them "normaler" It bothers me for a couple reasons. One is that Janey was a late bloomer when it came to autism. She was not diagnosed until she was 3 years, 4 months, and although I might have been terribly wrong, I don't think she showed serious signs until just before she turned 3. She was discharged from Early Intervention at 3 with few concerns---she has been in it for her motor delays only. There were little oddities, of course, but she was certainly not a slam-dunk, anyone could see it autistic child until that age. So we missed a good potion of those "crucial" years. And then I took what was probably a slacker approach. She got an IEP, she started therapies, but I didn't do a full court press. I didn't insist on 25 hours of ABA a week. She was not even in a full day preschool for the first 2 years (although I was angry about that, but chose to leave her at the school I loved instead of move her to another one where she would get a full day). I didn't ignore her autism---you can read this blog that started right after she was diagnosed if you want to decide for yourself---but I didn't go as all out as I could have.

And why is that? Partly because I was just not sure that I believed any one approach deserved that much of her time. I think ABA is good, done well, which it took us a long time to get done well (thank you, Mr. Ken!). I think strong teachers are good (thanks to all of you!), but I just don't think there is any one thing that needs to be done in huge amounts to "fix" Janey. It's partly that I think it's both too late and not too late. It's too late because although I am not sure what caused Janey's autism, I am pretty sure it's something that happened when I was pregnant, or long before that, when some autistic little genes came together somewhere in Tony's and my ancestors. It's not too late because I think one of the hallmarks of autism is a delayed learning period. Janey still learns new things all the time. It's slow to see, sometimes snail slow, but I see her using words she hasn't before, I see her becoming closer to being toilet trained, I see her accurately "reading" her videos to see which one she wants, I see her asking more easily for what she needs, I see her catching balls and running like a champ and getting excited when I tell her school is in 4 days.

I don't think Janey is going to catch up, to be "normal". Of course, I dream of it. Of course, I hope I'm wrong. But I don't think it's fair to her to spend her whole childhood in pursuit of that dream. If she can be happy, if she can enjoy life, on the days I see that dream within reach, she is living a valid life right now. Despite what I think Julie Clark would say.

Saturday, September 1, 2012

A Facebook page

I joined a Facebook page (I guess I "liked" a Facebook page, so I get the posts from it, technically) today, http://www.facebook.com/AutismWithASideOfFries So far, I really like it, as it seems to concentrate on the lighter side of autism---lots of those little old-fashioned looking postcards Facebook does, or other memes (I learned that word from my boys!) about autism. It's great to be able to laugh at my life a little. It's something I think a lot of professionals working with autistic kids don't get (although those at Janey's school are mostly an exception---thanks for the times we laughed until almost crying, you guys!) I've read books that were so deadly serious that I finished them crying. Of course, autism is a serious thing. It's very, very serious, but at times, our kids and our lives in general can be very funny---sometimes black humor and sometimes just plain old funny. And it's not wrong to feel that way, I don't think. I loved something I saw on the new page, along the lines of God creating autism to offset the amount of boring people on earth. Janey is rarely boring. She's lots of things, but she's almost never boring. And the fellow mothers of kids with autism or other related issues I've met through this blog are some of the funniest folks I've ever met (yes, I'm talking about you guys, Michelle, Sara and the rest!) And so it's great to be able to, in the midst of the tantrums and the spills and the crying and the sometimes despair, laugh my head off from time to time.