Summer update

In no particular order, some updates from our summer so far!

The initial genetic testing came back.  It was the kind of testing that looked for single letter changes in genes, not for larger deleted or duplicated portions of genes.  It showed that Janey didn't have Rett Syndrome, as the geneticists thought she might.  What did come up is a disorder that is hard to figure out the significance of, and which might or might not have anything to do with her autism.  It's a dominant genetic disorder that can cause seizures during sleep of the frontal lobe.  It has once in a while been associated with intellectual disabilities, but not usually to the extent that Janey has.  It can cause other sleep disorders, and she certainly does have very unusual sleep issues, but not perhaps the ones this causes.  The interesting thing is that the testing shows she inherited it from Tony.  Neither of them seem to have ever had seizures, during sleep or otherwise.  I was a bit overwhelmed at the time the report came in and I haven't researched this as much as I eventually will.  It's a very rare disorder---only about 100 families in the world, and we do plan to join a study about it.  But for now, it raises a lot more questions than it answers.

Summer school was...mixed.  The first 3 weeks were great.  Janey was in a sleepy mode, and therefore was more than well rested for school, and seemed to thrive.  But starting with week 4, she went into no sleep mode, sleeping very little each night if at all, and when she was awake, she wasn't in a good mood.  We started getting calls from school every day.  If you've ever been in that place, you know it's very tough waiting for that call, and hearing the latest about what has gone wrong.  I fell into a very low mood for a few days there, remembering all the toughest times.  Summer isn't my favorite time of year ever, and with Janey screaming and crying all day, then heading to school to scream and cry more so we got calls to go get her....it wasn't a good couple of weeks. She was also acting up on the bus to a big extent, and we got to hear about that every day as she got off the bus.  But by the last days of summer school, she had cheered up a bit and the very last day, I guess she was even good on the bus. 

At home, Janey loves to do three things most.  She likes car rides, showers and eating.  We do all we can to give her as much of those three things as we can, but there comes a time around 8 each night when she's had multiple car rides, multiple showers, and she's eaten as much as any person on earth needs to eat in a day (usually very healthy food, but even that has a limit).  When we tell her no more car rides, when we report that the shower is closed, when there is no more food being offered---well, you can guess it's not a happy time.  It can feel very frustrating to try so hard all day long to keep her happy, and then to have her get so angry when we finally just can't offer any more.  I know she isn't really intellectually capable of understanding why we are bothered by that, or that she isn't really being fair, but we are human beings with feelings too, and we can get worn down by her fury.

More and more, we realize Janey really craves, in addition to the three things mentioned above, time to herself, time alone.  And that is one thing we can't really give her, not fully.  When she gets home from a car ride, she likes to play in our long driveway.   And that's fine---as long as we are watching her. We live on a busy street in the city.   She isn't an eloper, and she has never gone into the street, but strangers pass by all day, and it just isn't safe for her to be alone out there. But she tries. She attempts to push us inside the house.  She says "You want to take a shower?", hoping to tempt us inside with what she herself would love.  She sometimes is even more direct, saying "Want to GO AWAY???"  It makes me so sad that she can't have that little thing she wants, to just be alone and play.  We tell her we are just going to be sitting there---we won't cramp her style, but of course that doesn't matter.  When she's in the house, she likes it best if she can be alone in the living room, and we do try to make that happen, but our apartment isn't huge and we do even inside have to keep a  backward eye on her.  I wish she was able to have the freedom she clearly wants.  But I don't see a solution here.

Janey will be 19 in a few days.  It's hard to believe.  In so many ways, she's a delight to us.  Even with my griping here, almost every day brings another great time with her, another funny moment or surprise joy.  Today, Tony took her for Chinese takeout, and they waited in the restaurant for her food.  When someone else's order was called, Janey eagerly jumped up to grab the bag, and Tony had to stop her from walking off with it.  Then she saw someone at a big table that looked like it had lots of room, and she went over to try to sit there.  Both these things were done with her infectious smile and joy in life, and people responded to that, by smiling and laughing and being kind.  There is something about Janey that brings that out, in so many people in so many ways.  It's what gets us through it all.  It's what gives us hope on tough days.  It's been a long, strange 19 years, but boy, does she keep life interesting.

Hopeful visit to an autism clinic

Today we had our visit to the Lurie Center, an autism center connected to Massachusetts General Hospital.  We had been waiting a long time for this appointment.  A lot of people had recommended this center to us back when Janey had her crisis in November, and I contacted them then.  To get the appointment, I had to fill out a lot of form, wait for them to be processed, and then I got a call to set a time, which was far in the future---but the future finally arrived!

Cheery Janey before the appointment

I was trying not to get my hopes up much for this appointment.  We've had several other such clinic visits at different places, and they have been mostly letdowns.  I didn't want to pin a lot of hopes on this one, but I must say I'm feeling good about it, and quite hopeful in a lot of ways.

The appointment mostly consisted of me talking to a psychiatrist specialist in autism.  Tony came along, and Janey was in and out of the room, as her patience for sitting around during long talks is limited.  I knew as soon as I started talking to the psychiatrist that she seemed to truly understand and ask the right questions about Janey.  In analyzing what was different in my head, I realized that it seemed like she had a lot of experience dealing with children like Janey---children on the lower end of the autistic spectrum, the children that wind up in hospitals and in psychiatric wards.  That was strangely comforting.  Often, even in the world of autism, I feel like an outsider.  I don't need peppy "resources" about camps Janey never could attend or ideas for games or books she could never read or play.  I need practical advice and help, and I felt like I got it there.

First, we got a prescription for a new medication.  This one will eventually replace the Risperidone that Janey has been taking for a long time.  The psychiatrist was very, very familiar with the various medications for kids like Janey.  We were pleased to hear her say that the psychiatrist Janey has seen up to this point has done quite a decent job with her medication so far.  However, he is a more mainstream guy, who I believe sees mostly kids with things like school anxiety.  Today's psychiatrist knows more about kids with severe mood swing, aggressive behaviors and self-injury, and we are hopeful about the new medication.  We did have a scare when our pharmacy said our co-pay would be $150 a month (for 30 pills!)  But we reminded them she has the supplemental state insurance, and for the first time, that worked well for us, and we didn't have to pay at all.  Out of pocket, the cost would have been $1124!  We joked that we certainly hope they are miracle pills.

Next, we talked about how we can get more help for Janey, and what we will do if she has another crisis.  The psychiatrist finally convinced me to consider in-home help.  I have been resistant to it, for many reasons---it is not respite, but rather someone working with Janey AND us, I am not terribly into having strangers come into my house, I don't feel like it would be helpful for our family, and a bit of "I don't need someone telling me how handle Janey".  But at this point, we are ready for any help we can get, and what most convinced me is that she told us it's the first step to getting almost any other kinds of respite style help.  So...okay.  We'll talk to someone about it.

If Janey has another crisis, we will take her to Mass General.  The psychiatrist said everyone in the ER there is trained to deal with autism, and she herself has connections to Bradley Hospital, where Janey went before.  She said it's possible that if Janey truly needs help quickly, she might even be able to get her directly admitted to Bradley.  I think that is what most made me feel a burden had been lifted from me.  I think I've been living in fear of Janey having another hospitalization, and of feeling completely alone in that, like it would be the end of the world.  The way this woman talked so matter-of-factly about it melted a frozen place in me.  She said it like it would be something we could deal with, something that is not shocking or horrible or unspeakable.  She said it like she expects it to happen at some point.  It's strange that would feel so freeing to me.  But I think I've been trying for a long, long time to fit Janey into a mold that doesn't fit her.  She is NOT mildly affected by her autism. Today I somehow felt for one of the first times that she is not one of a kind, that there are actually protocols in place for kids like her.  I'm not sure I'm explaining this as well as I can, but having a plan for what might happen makes it not feel like the world's worth thing.

Janey and William at Noodles and Company, eating out!

We will take Janey to her first follow-up appointment at the center in a few months, and in December we will see a geneticist, something I have long wanted to do.

The rest of the day was very nice.  We did a lunch out at an upscale fast food place, along with William, and Janey was quite good.  Then she went for a long ride with Tony and William to a guitar store.  She was cheerful almost all day.  And I am feeling better than I have in a while, feeling like there is a place, there are people, there are systems set up for kids like Janey.  I've always know there were others like her, thanks to all of you, but this is one of the first times I've truly felt there are others outside the world of us hardcore insiders who really get what we live, and that is a good feeling.

My First Guest Post! Guest Author---Freddy Amara, Janey's brother

Hello Rarer In Girls readers,

My name is Freddy, Suzanne's middle child.  I am 17 years old and currently a senior in high school.  My mother had requested that I write a guest blog entry about how Janey has affected my childhood.  I responded that I would be happy to; this blog has had a profound impact on my mother's life, as there is a wonderful community of more than just readers.  You all have let my mother---and my family---know that we are not alone.  Your support is incredible, and I personally thank you for reading my mother's entries and giving her support.

This is how Janey has changed my life.

It hasn't been easy with a little sister with autism.  I wish she wasn't autistic, obviously, as I feel I

cannot have conversations with her that I could have had with her had she been normal. However, I love her the way she is. I have a special connection with her that nobody else has, much the same as a normal brother and sister would have.   My personality has certainly been altered because of Janey.  I feel like I am more tolerant and patient than many other people my age.

One of the hardest parts of being a sibling of somebody mentally disabled is the misunderstanding among everyone else.   The usage of the word "retarded" has died down over the past few years, however, each time somebody uses it in an offensive context, I feel a sharp pain.  They don't know what it's like. The nights of screaming, the stares in public, the fear for the future.  I try to explain to people when they use the word how deeply it can hurt.

My parents have been great in my opinion. Ever since her diagnosis, they have made it clear that for my childhood, Janey is our shared responsibility; more theirs than mine and my brother's, however, there will come a time that when my parents will not be able to care for her anymore, and she will be our responsibility.  I accept this, as does my brother.  I do help out with Janey often, but my parents have let me have an otherwise completely normal childhood, and they care for me just as much as they would have had Janey not been autistic.  In a way, Janey's autism has given me more freedom than I would have had otherwise, for a huge chunk of their attention is spent caring for her.   This is good for me, I have learned independence at a younger age than others, and my parents have learned to trust me with my schoolwork and don't bother me about when I do my studies.

It should be said that I'm writing this on my own, my mother doesn't even know I already wrote this.  She'll proofread it before posting, I'm sure.

Autism is a scary thing.  I want to have children when I am older and have a family, however, it is widely unknown what causes autism, and it is possible that genetics play a role.  I have questioned whether I want to have children despite the risk of autism.  I know I'm quite young and I shouldn't worry about it yet at this age, but I can't help it.  I'm glad my parents had me, and to all of those parents out there who had an autistic child as your first, it must be a tough decision whether you should have more children.  It's not my place to say, I'm just happy that I exist, and I think I'll take the risk someday of being a father.

It is nice all the support people give towards finding the cause of autism, however, as my mother has likely spoken about before on this blog is that the public doesn't seem to care as much about helping families that have already had children with autism.  Many things could cause autism, or any other mental illness for that matter, and so I agree with my mother that it would be nice if there was more support or awareness for those who have a loved one already diagnosed.  I feel like I should follow in my mother's footsteps in raising awareness somehow.  How, I don't know.  I believe just letting people know how common autism is is the first step.  Not only that, but the effect it has on our lives.  You all reading this already do know and care, and so I thank you.  My only request is that you tell somebody about autism who might not know its effects on families, and maybe even share this blog with them.

Okay, Scientists, You Got Me Again!

Once in a while, I have a sneaking suspicion that autism researchers are messing with me.  I think they get together and say "Okay, let's pull up Suzanne's medical history and that of her family, look at everyplace she has lived and all the circumstances of her pregnancies and childbirths.  We'll pick something new from all of that this month to release as a possible cause of autism.  Wait 'til we see the look on her face!"  Of course, I'm not truly that paranoid or self-centered, but sometimes it's amazing how many potential causes of autism would work for me.

The newest is iron intake.  I have almost always tested as anemic, and that was very much the case during all my pregnancies.  With Janey, it was exasperated by the fact that the iron I was taking seemed to interfere with my thyroid medication.  Because having a thyroid basically not working was considered much more dangerous than having a low iron count, for the last half of the pregnancy, I didn't take iron.  I tried hard to eat a lot of red meat (despite popular belief, I was told it's a far better source of iron than green vegetables), but still, my iron remained low.  So there's another reason for Janey's autism!  It joins a nice long list, including the low thyroid itself, a family history of autoimmune disorders, my allergic reaction to Aldomet at 12 weeks pregnancy, the fact I live near a major street, several possibly on the spectrum people in Tony's family and mine, Tony being an older father, my living my first 6 years near Lake Eire at its most polluted with PCBs, preeclampsia during my pregnancy, birth trauma (Janey's umbilical cord was around her neck twice)....that's just the ones I can think of easily off the top of my head.

Those scientists missed the boat with ONE potential cause I saw the news today---having children very close together.  However, I'm not out of the woods with that one, because if you wait TOO long to have a child, over 5 years (there is 7 years between Janey and Freddy, exactly), the risk of autism again rises by 30%.

What do I do with all this?  Not much.  There isn't anything I can change from the past, and I'm certainly not planning on having any more children---I'm 48.  I am glad research is being done, but all joking aside, the fact that so many of the factor apply to me is probably the case with many parents of autistic kids.  There are so many potential reasons thrown out there that I couldn't imagine being a pregnant woman trying to avoid all of them.  There's just too many.  I think about this in terms of my sons someday.  If they become fathers, there were certainly right off the bat be an increased risk of them having a child with autism, and I feel for their future wives thinking about them trying to avoid any further risk.

Do I sometimes feel guilty about all the risk factors that might have affected Janey?  Of course I do.  I know I shouldn't, but guilt isn't a logical emotion.  I don't obsess over it, but I think about it.  I get angry about a few of them, especially the Aldomet reaction.  I wonder if I should have had a C-section---if a good ultrasound could have seen the cord around Janey's neck.  I worry I didn't do enough to keep my iron up.  I have other worries, the kind that suddenly hit you in the middle of the night and aren't logical, but the middle of the night brain isn't good at logic.

I hope some day, all the possible causes of autism are narrowed down, or at least better defined, so that knowledge of them can be incorporated into prenatal care and PREprenatal planning.  I suspect, though, that no matter what, we'll never totally have answers about autism's cause.  I hope society will do its very best to support the children that, despite all the research, still develop autism.

OCD and LFA....combine for frustration...

Lately, it's becoming more and more obvious to Tony and me, and probably to almost anyone who spends any time with Janey, that she has Obsessive-Compulsive Disorder, OCD.  I don't normally like to play psychiatrist and do freelance diagnosing, but I have more than a passing familiarity with OCD, and it's getting pretty hard to miss.  Combining it with Janey's low-functioning autism and her intellectual disablity---well, let's just say things have been a little tough lately.

How does the OCD show itself with Janey?  Her particular brand of OCD seems to be the arranging brand. Here's a good explanation of that... link.  Janey needs to have certain things in certain places.  The biggest example of this is the remotes.  To watch TV, we use a TV remote and a Wii remote.  The Wii remote accesses Netflix and Amazon Instant.  Janey needs the Wii remote to be on the lower left corner of one table near the TV, and the TV remote to be on the lower left of the other table near it.  She will adjust them many, many times an hour, to make sure they are just right.  Another example is people's legs.  She cannot stand crossed legs.  If anyone in the room has crossed legs, she will go over and physically uncross them.  If they re-cross them, she'll uncross them again.

The odd part of these needs is that openly, she doesn't get upset over things being out of place.  She just "fixes" them.  This from a girl that can scream for an hour over not getting cheese cut as quickly as she wants...  But the OCD needs seem different, somehow.  She seems to just feel they have to be fixed, with a minimum of fuss and with infinite patience for our lack of understanding.  It's like it's her job---arranging things in a world that is constantly un-arranging them.

The most annoying need Janey has OCD-wise is lights.  They need to be turned off or on, in a system that is hard for us to figure out.  As best as we can figure, usually they need to be on in the daytime and off in the evening, but back on in the middle of the night.  This is pretty much the opposite of what we want.  I can't tell you how many times I've been trying to read something in the evening when Janey starts her light patrol and turns off the light.  I turn it back on, and within minutes, even if she's not in the room when I turn it on, she's back to check, and off it goes.  If she wakes in the night and the lights are off, she gets up and turns them all on, often waking us all up in the process.  She does this quietly and efficiently---no fuss, no screaming.  Just determination.

Touching certain objects is part of Janey's OCD also.  If you follow her around the house on her light patrol, you see that she needs to touch the same places each time.  Most especially, she is very focused on touching the side of a certain bookcase.  I am sure she touches this area hundreds of times a day.

A big part of OCD is the feeling that something will go very wrong if the rituals are not followed.  There is no way for Janey to explain to us what she feels will go wrong, and I don't even know if she can consciously form a definite worry, or if she just feels the compelling need for things to be put right.  But I suspect that very often, when she gets upset out of no-where, it's because she is somehow not able to perform a ritual or put right a wrong she feels needs to be righted.

It seems particularly cruel to me that fate has dealt Janey OCD---a disorder that my family seems to have a gene for.  It's hit us over and over (including myself).  But in Janey's case, more than even usually, the urges must be confusing and overwhelming.  I think she's dealing with them as well as she could be expected to do, but it breaks my heart that she has to deal with it at all.

What Made Janey Autistic #3 in a series

From as early back as I can remember, for some reason, I've been fascinated with genetics.  I've read everything I can find about it.  My sister shares this interest, and we actually used to pretend that our dolls suffered from a rare genetic disease we called Ingalls' Syndrome (I think we were into Laura Ingalls Wilder at the time).  It has symptoms that made dolls, well, doll-like---floppy and not too good at walking on their own.  My sister Carrie came close to going into genetic counselling, and I've kept up my interest through reading over the years.

Genetics, however, when it comes in the form of possibly genetic-linked traits, is not quite as thrilling when it happens to  your family.  But it's certainly a possibility for a cause for Janey's autism.  And a delicate subject.  I'm not going to list family members on both sides with oddities that might be somewhat autism-related, but suffice to say they exist, for sure.  Nobody has full blown autism, but both sides of the family tree are peppered with quirky people.  It's certainly possible that some genes came together that were enough to give Janey autism, or more likely put her in a vulnerable state where getting autism was more likely.

I've always wondered if it's possible Janey has some genetic disease that hasn't been identified, maybe a mild version of one or a mosaic version.  She has a few physical soft markers, little oddities.  One is her toes---the 2nd and 3rd toe overlap, and they are slightly conjoined---not connected, but they seem to share a common root.  She has angel bite type birthmarks when she was a baby that still show up when she cries hard.  A pediatrician at the clinic that diagnosed her said her heart was in an odd position--she even said she thought it might be on the wrong side, but my pediatrician said at most it's more in the middle of the chest than most people's hearts.  She had the late walking, but that's fairly common in autism.  And there was the one MRI way back that showed she had some white matter in her brain where it was supposed to be gray matter, some little dots of it I guess.  But a further MRI didn't show that.  So little things, which of course I've Googled to see if they fit into any pattern, and haven't found one, as of yet.

I do believe that genetics are a huge force in making us what we are, more than most people think or like to think.  I'm fairly sure that genetics have something to do with Janey's autism.  It's another component, along with the first two parts in this series.  When gene analysis gets even better, I might see if a geneticist can have a look at her genes, but at this point, the genetics of autism isn't at an advanced enough point to make that worth it, I don't think.  Until then, I'll call genetics a strong maybe as a cause.

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.

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.