As honest as I can be, to those new at this autism parenting life.

For some reason, tonight as I tried to get to sleep, I kept picturing a parent out there somewhere, a parent who has just been given the official word they have joined our club, that they have a child with autism.  And I pictured what I would want to say to them, if I allowed myself to be completely honest.  Here goes...

First I want to say to you---nobody in this world knows how your child's life is going to look 5, 10, 20 years from now.  That's true for anyone, but from what I've seen, it's especially true for kids with autism.  Maybe your child will start talking if they don't talk now.  Maybe they will never say a world verbally.  Maybe they will learn to read, to write.  Maybe they will go to college.  Maybe they will never progress academically in any way.  Maybe they will have some talent that is incredible.  Maybe they won't.  The starting point, the point they are at right now, seems to somehow have very little impact on the eventual course of things.

And I honestly don't think that what you do, the therapies you get or the interventions you try or the diets you take on or the model of education you choose will make much of a difference.  Certainly many people will say I'm wrong there.  But it seems to me that our kids do what they are meant to do when they are meant to do it.  How we react to them, what kind of people we surround them with, that matters, but just how we try to teach or train or guide them, the methods we use, the resources we can or can't afford, the diets we chose or don't chose to follow, the methods we embrace, the toys we buy...don't worry too much about them.  Worry about surrounding your child with people who love her, who enjoy her, who want the best for her.

Pick your battles. Don't mortgage your future to move to the school district people say you should live in for the "best services".  Don't spend every waking moment pursuing a therapy that others have told you must be done in the crucial, special, essential time frame of "no matter how early you started, it wasn't early enough". But DO fight with the medical doctors when you know something is wrong physically with your child.  Fight to get them to take that temperature or give that shot or examine that stomach.  That is a battle you must fight, one of the few essential ones.

Don't let anyone make you feel guilty for being overwhelmed, for being tired, for being in despair at times.  Every single parent in the world has those feelings sometimes, but the big difference is that we simply don't get the breaks other parents do.  That is the huge difference.  Other kids go to friend's house.  Other kids can play sports or join activities or even just get to be 12 or 13 and be able to stay at home alone.  Other kids don't need to be watched every second of every day.  I don't think, often, it's that our kids are even tougher to parent than "regular" kids  It's that the parenting time we put in, over the years, is far more than with regular kids.  And when you never, ever get a break, it adds up.  You are going to have some very tough days.

Find some friends who get it.  Find them online, probably, because although it's much easier to find support groups for parents than any respite ever, you aren't going to necessarily or even probably meet the parents at these groups with kids like your own.  Autism takes so many forms.  Find someone with a child a lot like yours, and when you do, talk to them all you can.  Call each other often.  Email.  Visit, even if they live far away, if you can.  Use my Facebook group if you need a place to ask for a friend.  I honestly, truthfully don't know if I would have made it without my compatriot friends.

Give up on trying to reduce screen time, if you have a child who loves to watch the screen.  Believe me, I was the parent whose kids were going to play only with wooden blocks, who would live for books and shun TV.  But Janey loves videos.  I can't picture her life without the movies she loves.  They bring her great joy, and frankly, that brings me great joy.

Enjoy the heck out of the many, many parts of being an autism parent that frankly are just plain better than being a regular parent.  I enjoy having a daughter who will never, ever be catty or exclusionary to other girls, a daughter who jumps with joy because we are going to take her for a car ride, a daughter who loves vegetables with abandon, who has never once argued with me about clothes or told me I was ruining her life or in fact ever done anything deliberately to hurt anyone, ever.  Your reasons will vary, but believe me, there are great parts to being the parent of our kids.

Find ways to enjoy life even on the worst days.  Even on the days when Janey literally screamed all day, on the mornings after she didn't sleep all night, even in between changing bedding over and over, or dodging being bit---even on the days I can barely even think about---there was coffee.  There were stolen word game moments.  There were 15 minute naps after begging my sons to watch their sister when I literally couldn't keep my eyes open.  There were ways to live moment to moment to get through days that I didn't think would ever end.

More than anything else, I want to say that although it might seem right now like you've been given the worst news you can imagine---it isn't.  There will come a day when you realize that you can't possibly imagine your child being anyone other than who they are.  Just like everyone on this earth, they aren't perfect, but they are perfectly themselves.

Luck and Joy

Janey's annual IEP was last week.  For some reason, I was feeling edgy about it.  I don't know why.  It's about the 30th IEP I've been to as a parent, and there wasn't any big issue I needed to address. 

When the meeting was over, I realized what I think had been getting me worked up.  It was the feeling that somehow I SHOULD have something big to insist on or ask for.  And I didn't.  We left the meeting extremely pleased with all we had heard.  We are so lucky.  Everyone there is truly on Janey's team, not just in name but in reality.  They love Janey.  They get a kick out of her.  They see her as an interesting and valued person.  And that is what I've always wanted in those who worked with my children, and it's what I've almost always gotten.

A joyful reunion

One great piece of news from the meeting is that Janey's teacher will have her again next year.  7th and 8th grade at her school works that way, I found out.  I adore Janey's teacher.  She is absolutely wonderful.  I loved hearing her stories about Janey---stories that showed she knows how to encourage Janey to do her best while still respecting her for who she is.  The OT at the meeting was terrific too.  One thing she said that really stuck with me was that she laughs 10 times during a session with Janey.  I love that attitude.  Janey can truly be a lot of fun to be with, if you get her, and the people at her school get her.

It was a very nice weekend last weekend.  Freddy was home all last week from college.  Then, Friday night, as Tony was making dinner, I heard him say "You aren't going to believe this!  I can't believe this!"  I could tell by the sound of his voice that something very unusual had happened.  He sounded shocked---almost scared.  I jumped up and saw, coming through our door, my older son William!  He had flown in from Chicago, where he's a grad student at the University of Chicago, as a total surprise!  He wanted to give us a shock, and he did!  He was here from Friday to Monday, and having all three kids in the house for the weekend---well, that was wonderful.

That night, we ordered takeout, and were all eating it together in the living room.  It struck me something seemed different, a little off.  And then I realized what it was---Janey was just sitting and eating and being part of the crowd.  She wasn't crying, she wasn't making demands, she wasn't needing extra attention.  We were just chowing down as a family like we love to do.  It was one of the first times I remember us all being together in a regular type family activity where she didn't stand out at all.

I wonder often---if someone was viewing us from outside, how would they see things?  I know, in reality, there are still many, many times in an average weekend that Janey gets very upset.  There are almost always times when she screams, or bites her arm, or demands a car ride RIGHT NOW, or so on.  When I look back on a weekend, though, those times sort of get edited out now.  I think we can do that because unlike in the past, they don't last for long.  She gets upset, we deal with it one way or another, she settles down and it's fine.  It's a combination of things.  We learn more all the time about how to best help her, and she learns more all the time about us---that we WILL take her for a ride if she say we will, that if we don't have her preferred food right that moment, we WILL get it in time, that if she isn't getting all our attention right that second, she will get it when it's her turn.

Many people with a child like Janey seem to find the kind of settled peace that we have as she gets older.  I think a lot of it is acceptance.  If I put things in a negative way, I could say it's also giving up on certain things.  We don't feel much sadness or despair over what Janey can't do, most of the time.  She is who she is.  We don't expect her to never get upset, never scream or cry or bite her arm.  We know those times are part of her, just like the times she dances and sings and laughs.

As William was getting ready to go home yesterday, he remarked on Janey.  He said "You know, overall lately she's a joy"  You should have seen her when she saw William at first.  She was overcome with happiness to see her big brother.  At one point, he took her with him to Dunkin Donuts, and he couldn't believe how she waited patiently, how she just enjoyed the experience, being with her brother and getting a treat.  William has been here for all of it.  Hearing him say that---it meant a lot.  Freddy said similar things too.  She is lucky to have the brothers she has, and they are lucky to have her.  And we are lucky to have all three of them.

Re-evaluating Janey

Today was supposed to be Janey's IEP meeting day, the re-evaluation one that takes place every three years, but one of her therapists didn't have a chance to evaluate her, so it's been delayed until the end of the month.  I did get, though, a progress report on her ABA therapy, and it was interesting to read. As I was preparing mentally for the meeting over the past weeks, I was also doing my own mental evaluation of the last three years.  How has Janey grown?  What areas are still tough?  What do we want to work on for the future?

The last three years for Janey has been eventful.  As most of you know, they featured hospital time, both time in a psychiatric hospital (with six horrible days of "boarding" in a children's hospital before that), and time in a regular hospital, for a very complicated burst appendix.  Those stays are the big things that stand out about the last three years, but there's a lot more to think about.

I'm not sure I'd go that far, but it's the only image I found that worked at all!

How would I define Janey right now, if I looked at her with fresh eyes?  Well, she's mostly a happy 12 year old, and that is wonderful.  That alone is almost enough.  She has many more happy than sad days.  She knows what she enjoys, and she knows how to ask for those things---car rides, music, videos, food, snuggling.  She's gone through puberty earlier than most, and she looks like an adult, physically, which is tough in some ways but not in others.  She continues to be very intellectually disabled.  She talks mostly in single words or phrases, she doesn't reliably recognize letters or numbers, she can't write or draw---she is and, baring a miracle, always will be unable to care for herself, live on her own, work (except in some hugely sheltered way).

The joy of her life, and the area where she in many ways is far beyond most, is music.  She has hugely sophisticated taste in music.  She knows what she likes and doesn't like, and lets us know.  Although she won't perform on demand, she very often surprises us by singing a song we don't think she's heard for years.  I do think she knows every song she's ever heard by heart, tunes and lyrics.  Music is her joy in life.  She learns far more easily when music can be part of the lesson.  She loves to dance.  It would be impossible to describe Janey as a person without mentioning music.

There are parts of life with Janey that are intensely frustrating, for us and we are quite sure for her.  Toilet training---not there.  Closer than three years ago, but inconsistent and far from reliable.  Communication, especially in terms of what is upsetting her, is still very hard for her.  She still often self-injures, by biting her arm or scratching her chest.  She occasionally lashes out at us or others---not as often as in the past, but when she's very upset, it's a concern.

The ABA evaluation, even in their required formal language, captured a lot of what makes Janey Janey.  Even the statistics---there would often be a task she did with 100% accuracy on one date and then with something like 20% accuracy on a later date.  The notes say that much depends on her mood and her level of arousal.  Janey in her best mood is so different than Janey in her worst mood that it's hard sometimes to believe she's the same person.  Nevertheless, she's made progress, and sometimes we even see school progress carried over to home.  She will ask for help when she needs it, she sometimes tells us when something hurts ("does your toe hurt?), she responds with "yes" and "no" more readily than she used to.

I think almost the more important three year re-evaluation is that of Tony's and my attitude.  I don't think any parent could go through the scares we did with Janey without an intensification of how much we treasure her.  We are so glad she's here with us.  We worry less than we used to about progress.  We accept that much of how Janey is is how she will remain, and that is fine.  On the less positive side, in some ways, we are tired.  We still so very much wish there was more respite available.  It's the week of both our birthdays, and that is always a reminder that autism, or Janey's brand of autism, never, ever gives you a break.  She comes first.  We don't have a life outside of caring for her during any non-school hour.  We love her so much, but she consumes us.  We can accept that, but I think we could be better parents to her with more help.  There are parts of life with Janey that would challenge the patience of a saint.  And then, there are parts of life with her that would delight and enchant anyone.

It's been a true privilege to share Janey's life with all of us, and to be able to be a part of your lives.  I will continue to do that for as long as I can, hopefully for the rest of my life.  It's the way that, with the restraints life with Janey has placed on me, I can try to light a candle instead of cursing the darkness. I think of all the others living this life often, and I hope all of your re-evaluations contain some elements of joy.

As 2016 ends...

2016.  A lot of people seem eager for this year to end, but for us, and for Janey, it was overall a good year.  It held far less ups and downs and dramas than the last few years---no burst appendix, no psychiatric hospitals, far less days of crisis.  It feels mostly like the legendary prophesy I've always heard, that life with a child like Janey gets easier in time, has come to pass.

What caused this?  Much of it is just Janey growing up, and in a way, us growing up too.  After the years of crisis, we made a decision, unconsciously, to change instead of asking Janey to change.  It's not like we woke up one morning and suddenly became radically into total acceptance, but we somehow realized that everyone is happier if we let Janey be Janey, if we embrace the things she loves and minimize the things she doesn't.

There are other factors too.  She is in a stable school situation.  I think the change of schools when she was in third grade had a huge destablizing effect for a couple years.  It was probably a necessary change, but I am not sure if I had it to do over knowing how much it would throw her off, I would have agreed to it.  But now she's been in her new school for years, and it feels familiar and comfortable to her.  The medication she is taking seems to be helping, too.  Her brothers are away at college, and although we all miss them hugely and love it when they are home, she is essentially an only child when they aren't, and she loves the undivided attention. 

I'd be amiss if I didn't give credit to music, too.  Music is such a huge part of Janey's life.  She knows what she likes, and she is an extremely interactive listener.  When she hears a song she loves, you would have to be devoid of any sensory input to not know how much she loves it.  She rocks and rolls and screams in delight and asks to hear it over and over and simply shows joy that I wish every performer of the songs she loves could hear---it would be a tribute they wouldn't forget.  Her tastes are eclectic.  She loves Christmas hymns and Twisted Sister and the Beatles and banjo music and the occasional Chipmunks and too many others to mention.  There's much she doesn't like too, and she lets us know in no uncertain terms---when a song comes up that she hates, she said "I want MUSIC!", letting us know that whatever horror we are playing doesn't deserve to be called music.

I need to be honest, though, and say at times, I feel a lot of sadness over the equilibrium we have reached.  I wish I didn't, but I do.  Janey talked less in 2016 than she did in probably any year since she first regressed at 3.  That was hard to take.  Her speech has slowed down.  She uses familiar phrases and simple requests, mostly.  The other day, I was remembering a time when she was two, when we were in a waiting room and there was an old lady there, and Janey said "I don't like she!"  The lady heard and it was of course hugely embarrassing, but the thought of her expressing an opinion that directly and easily---I suddenly started to cry very hard, thinking how she can in no way do that now.  I was driving and had to pull over.  I accept Janey's speech, I am glad she talks as much as she did, but still, I must admit, I feel a huge amount of sadness and anger over whatever took her speech away.

At points this summer, I thought we might actually have the whole toilet training thing down.  But we don't.  That area has regressed badly.  Sometimes I am ready to simply admit Janey might never be trained fully.  It would be a relief to admit that.  She manages at school in underwear, but lately she comes home and immediately soaks herself, and I wonder if she is working very hard to hold in urine at school all day.  At home, although we take her to the bathroom endlessly, she very often, very very often, has "accidents", and I am starting to feel that even just thinking of them as accidents instead of just her doing the best she can do is doing her a discredit.

With all this being said, what I most wish I could portray with words is how much joy Janey brings us, what a wonderful person she is.  When she is happy, she is the happiest person you can imagine.  She makes everyday little things feel like the world's biggest treats---shopping for salami, hearing a great song, snuggling, sneaking a drink of coffee, giggling over nothing.  There are times Tony and I look at each other and smile, and we are both thinking that few typical 12 year old girls would love their parents as unabashedly and exuberantly as Janey does.  As I was writing this, Janey made her most common request---"Snuggle on Mama's bed?" (the bed is hers, not Mama's, but the phrase doesn't reflect that!)  As I snuggled her, I asked her if I could take her picture.  Here's that picture--messy hair and all---which might give you a little idea of the joy that girl's face can show.  

Happy New Year to all, and may 2017 bring you all joy.  

The best weekend ever

The title says it all.  This past weekend with Janey was the best one we've ever had with her.

Janey, all weekend long, was happy.  Not manic happy, but very, very happy in a contented, sweet way.  There was not a single moment of tears or screaming.  She was smiling pretty much all the time.  It was amazing, truly amazing.  I would have given anything to be able to see this weekend during some of our darkest times.

We were able to do things that we are never able to do.  We took Janey to a new food place, Wahlburgers, and got takeout, which took a little while, and then ate it outside in the city.  I felt like I was living someone else's life.  We went to Savers, and Tony was prepared to take Janey out, for a ride or walk or whatever to keep her happy.  Instead, she was happy AT the Savers.  For 90 minutes.  Happy looking around, laughing, talking....amazing.  We sat back on Sunday night and watched two hours of old Family Feud episodes.  Janey watched with us, or played with her iPad, all in perfect contentment.  She slept well, she ate well....she was beyond a delight.

And of course, I want to figure it out.  What was different?  How can I capture what happened and repeat it?

I have a few theories.  I think she's very, very happy at school this year, and that translates to happy at home.  I wonder if she has pain of some sort a lot of the time, and it was gone for the weekend.  It was the first cool weekend of fall, and perhaps she loves fall and hates the heat, like me.  Tony and I had little else going on, and gave her a lot of attention.  We were both happy, after a long week, and she picks up on emotions tremendously.  Who knows?  I almost hate to write about the weekend, for fear of the jinx, but I had to.

There were lots of times when I thought it would never be like this.  There were weeks and months and even years where it was so hard I honestly sometimes felt I couldn't go on.  And however hard it was for me, I know it was so much harder for Janey.  No-one should ever be unhappy as much as she was.  I have so much joy when I see her happy.  It makes me realize that is all that matters with her.  The autism makes no difference.  The intellectual disability makes no difference.  It's her happiness that makes the difference.

I will try not to over-analyze.  I just wanted to record this weekend before it slipped into the vast territory of past time.  I wanted to have a record of how it can be.  And I wanted to thank Janey, and tell her I hope with all my heart that happiness like she has had lately can be the default state for the rest of her life.

The Happiest Day

This past Saturday, we went to a little amusement park called Thomas Land.  It's an offshoot of a long beloved Massachusetts attraction, Edaville Railroad.  It's aimed probably at the 3-6 year old demographic, an age we don't have a representative of, but William when he was that age was one of the world's biggest Thomas the Tank Engine and Friends fan, so even now that he is 21, he had an urge to take in the park.  We took Janey along not at all sure how she'd feel about it, but wanting to give it a try.

Well, I would have to say it was Janey's happiest day ever, as the video above of her extremely happy flapping shows.  It was amazing, astonishing, purely wonderful.  She was happy, and often overjoyed, the entire time we were there.  She and Tony rode almost every ride, she danced to the music playing in the park, she rode the Thomas train twice, and even when we were just sitting to rest, she beamed at William like we've never seen before.

Janey looking at her brother William with a hero worship look!

I have to admit I'm not really an amusement park person.  I don't like rides, especially anything that goes around in circles, and I don't like the high prices of the food and souvenirs and park entry.  I almost sort of prided myself on thinking my kids would feel as I did..."Janey has some pretty sophisticated tastes.  She's not into things like amusement parks".  I was wrong.  And I'm very glad I was.

Janey's unprompted wave from the elephant ride

My friend Rebecca sent me a link to this blog post, written by a woman with autism about how strongly she feels joy in the things she loves, what she calls the "obsessive joy" of autism.  It make me think a lot.  I don't think I've ever, ever been as happy as Janey was at the park for as long as she was.  With me, there would always be something holding back the joy a little, even when I was 11 as she is.  I'd worry socially---were the people with me happy?  I'd worry about safety---was the ride going to fall over?  I'd worry about how long
we'd stay---was someone going to make me leave before I wanted to?  I'd worry about food---when were we going to eat?  What would I get to have?  I'd worry about the ride home, about the weather, about anything and everything.  Admittedly, I'm a worrier (less now than at that age, but still...) but I think it's a common thing to have our joy measured with worry or care.  I know Janey has worries and cares, but I think she's able to focus on happiness when happiness is what she is feeling.

Thomas in all his glory!

The world is a scary place lately.  I've read a lot about what people are doing to explain the events in Orlando to their kids.  Sometimes, I am glad I don't have to do that with Janey.  She is unaware of world events.  I'm glad of littler things.  She will be going to a new school for summer school (back to her old school in the fall, but summer school works differently) and I am nervous about that.  Janey isn't.  I don't know if she understood me when I told her about the change, but either way, I am pretty sure she doesn't worry much about the future.  She is very sad in the moment when she is sad, but she is also very happy in the moment that she is happy.  I'm not saying it's a better way to be, or a "gift" of autism, but it simply is what it is, and I am happy she can be that happy.

We might get a season pass next year to Thomas Land.  I don't know if any day will be as special as this past one, but I am pretty sure we'll be visiting Thomas, Percy, James, Toby and all the crew for years to come.

Janey's Halloween

Growing up, I'd say Halloween was my favorite holiday.  I vividly remember counting the days until it arrived each year, as most people count down to Christmas or their birthday.  I loved it for the candy, of course, but also because it felt like a day that usual life took a turn.  You could go to people's houses, knock on their doors, and they would give you candy.  Since we lived in the country, my father drove us around town, and our haul was limited a bit by that, so I used to daydream about when I would have kids, and we'd live in an area with LOTS of houses, and they could trick-or-treat the night away and come home with HUGE bags of candy.  That did happen, for a few years with the boys.  But kids grow up and either don't go out any more, or go with friends instead of parents.

Janey never really warmed up to Halloween in past years.  She didn't much like dressing up, and she wasn't terribly motivated by candy.  I didn't push it.  I wished she would be interested, but she wasn't.  Last year, Halloween came right before the very worst time ever, when she was really breaking down.  We went to one house only, our next door neighbors, and she was done.  A few others years, we didn't even try trick-or-treating.

This year, I signed Janey up for a Halloween party put on the autism support organization for our area, for the 30th.  We went last weekend to get a costume.  I let Janey pick what she wanted, and she pointed to a shimmery long cape, overpriced, but I got it anyway.  I didn't get any hats or masks or other accessories, because a cape is about all I figured she'd tolerate wearing.

We went to the party last night.  It was not a hit, but not a disaster, either.  We stayed about 10 minutes.  The room was hopping with kids and adults.  We got there about half an hour after it started, which I thought would be good, as I knew Janey wouldn't want to stay the whole time (2 hours) but that might have been a mistake, as things were so crowded once we got there.  It was set up to have volunteers take the kids while the parents sat at the edges of the room.  I liked that idea, but I knew in practice it might not work with Janey, and it didn't.  The room was set up in activity stations, with the idea that each child would do an activity and then get candy at each one.  The first activity was decorating a treat bag, with coloring and writing a name and stickers.  Janey can write her name, sort of, under ideal circumstances, but not with a stranger in a noisy crowded room, and she doesn't color.  So they lost her quickly, and she ran over to us and said "want to go for a car ride?"  We tried to get her to stay a little longer, but it was obvious she was done.  In keeping with our new philosophies, we left, although I have to admit I was disappointed.  It is hard when she doesn't tolerate things that are specifically for kids with autism, and I'm always surprised how many kids with autism seem to be having a great time at them.  I love it that parties like this one are available, and I'm glad we went even for a little while, but still...it's hard sometimes when even in the world of autism, Janey stands out.

After the party, I wasn't hopeful for trick-or-treating, but I really wanted to give it a try.  First, I took Janey to our next door neighbor's house, the one house we did visit last year.  Janey has had the urge to trick-or-treat there almost every day since, and it's hard to convince her that it's a once a year thing!  So she was very happy to go back there!  They are so sweet and kind to Janey.  We are lucky with our neighbors on both sides.  Then, we went over to my friend Maryellen's house a few miles away.  I figured at least Janey would be able to trick or treat there.  Once we were there, I decided to try taking her to a few houses around their neighborhood.

And that was...wonderful!  I am still almost in tears over how well it went.  Janey was excited!  She marched eagerly along, going from house to house, taking a piece of candy, sometimes saying "trick or treat" and sometimes saying "thank you!" but always smiling and flapping with excitement and singing to herself.  Everyone noticed how happy she was, and we got absolutely nothing but positive looks and comments.  It was like a dream.  These weren't people I knew---they were Maryellen's neighbors, not mine, and they hadn't met Janey before, but they were to a person kind and sweet to her.  We went around for about 20 minutes, picking up lots of candy, and stopped while Janey was still very happy.

I think as Janey gets older, in some ways, people accept her more.  I didn't say to anyone that Janey was autistic, but I think everyone knew.  She is almost as tall as I am, she looks older than her actual age, but I held her hand all the time, and spoke for her when she didn't speak.  And when Janey is happy, there is something about her that draws people to her.  I might just be saying that because she is my daughter, but others have told me the same thing.  She is so blissfully happy, so purely happy, that others are happy being around her.

This has turned into one of my longer blog entries in a while!  I'll stop for now, and just say Happy Halloween to everyone.  And say---keep holding out hope.  When I look at how Janey did tonight, I am amazed.  It might never go this well again on Halloween, but I have tonight to remember.

Janey is 11!

In many ways, I'm glad to see Janey's year of 10 being over.  It was a tough year, by any standards.  It featured two long hospitalizations---one for psychiatric reasons, one for a ruptured appendix.  Partly because of that, her school year was rough, with many absences and a lot of behavior issues, and not much progress, if any, academically.  However, I look toward Janey's year of being 11 with tempered hope.

Who is Janey, right now?  She's a beautiful girl.  She's getting taller and taller---I wouldn't be surprised if 11 is the year she overcomes me in height.  She's endlessly interesting---you can say that about her!  She is prone to extremes of emotion.  She goes from the highest of highs to the lowest of lows, sometimes within minutes.  She loves the things she loves---certain music, some movies and TV shows, some people.  When she doesn't like something, you know it.  Her smile is something amazing.  Her scream is, too.  She is intense.  She is a force.  She's my Janey.

Learning to be Janey's mother is a process that will never end, I'm sure, but I feel like I've made some big steps this year.  One of the biggest is a step of acceptance---acceptance that Janey is not going to change.  She is who she is, and it's us who have to change.  We can work helping her with some issues, we can try to teach her and modify her behavior, but in large, it's our job to modify.  We have the tools to do it.  She, for whatever reason, doesn't.

Parenting Janey is not something a book or an expert or anyone else can tell me how to do.  I need to figure it out myself, along with Tony and her brothers.  There have been some moments from this past year so tough that I never dreamt, in a million years, that I would have such moments in my life.  I picture a room in the ER full of people trying to subdue Janey after she bit me and started flinging everything in site.  I picture being told Janey's appendix had burst and she needed emergency surgery, right then.  I picture the moment I got the call from her school that her behavior was such they were calling an ambulance to take her to the hospital.  I picture the night we struggled all night to keep her oxygen mask on, as her oxygen leveled dropped to dangerous levels over and over.  After a year of such moments, we no longer are living a life that parenting books cover.

But hope shines through.  The simple phrase "I'll be so proud when you calm down" has worked some miracles lately.  In leaving it up to Janey to calm herself, in praising the end result and not worrying about the reasons for the outburst or feeling we must react in typical ways, she is learning to calm herself, and we are learning something I thought I already knew, to emphasize the positive.  And we are learning to have true delight in the little moments of joy Janey gives us.  Yesterday, she said "Chinese rice, please?", hoping for a take-out treat.  Tony said "Chinese rice?  That's an interesting idea!" and Janey repeated back, in her perfect imitation voice, "Chinese rice!  That's an interesting idea!" over and over, encouraged by our laughter.  We never did get the Chinese food, which she handled, but we had a lot of fun.

I think the biggest change in my mind lately has been in how I see Janey within the family.  We've all realized, from the times she was in the hospital, that she is a hugely vital part of who we are as a family.  Somehow, in the past, she was always separate in my mind.  I thought of it as having two "regular" kids and one "special" kid.  It's hard to admit that, but it's true.  Lately, I have gradually changed that thinking. I have three kids, three amazing kids.  They are my family.  We might not be quite like other families, but no two families are.  All three of them are equally special, not "special".  So, a very Happy Birthday to my Jane---and, an equally Happy Birthday to Freddy, who turns 18 today!  August 16th was a very busy day for me, 11 and 18 years ago today!  And all my love to them and to Tony and William.  You are a family any woman on earth would be proud to have.

Bread and Salami

I read a book recently called "My Baby Rides the Short Bus".  It was a collection of essays about raising children with various special needs, although most of the kids had autism.  It triggered a lot of thinking for me, and went along with something that had been brewing in my head.

Going back a bit...In general, Janey has been much happier this week.  The medication seems to be helping, and I hope some of the new things I'm trying are helping too, like the positive reinforcement to the extreme.  Whatever it is, I am VERY happy about it.  But realistic, too.  She often has honeymoon periods on a new medication, or a new dose, or a new classroom, or anything new.  Eventually, her moods cycle around again.  But I have to enjoy right now while I can.

I wrote earlier about Tony trying to take Janey to the store and her freaking out and screaming and him having to leave with her.  When that happened, he was buying her some salami, her favorite food right now.  For the next few days, she asked for salami over and over and over, and I told her each time "We don't have any salami.  Remember at the store when you screamed?  We had to leave before we got salami.  Next time, when you don't scream, we will get salami"

A few days ago, Janey and I went to get William from work at Whole Foods.  We left a bit early, and I decided to try a quick shop with her.  She was excited.  First, she went to the area where the VERY expensive salami is, the kind I think they must fly over on its own plane from Italy every morning to justify the cost.  Luckily, that isn't the kind she likes best now.  We found the moderately extremely expensive salami aisle and got a few packs.  They are organic, uncured, no nitrates, that kind of stuff, but she just likes them because they really do taste great.  Then, we went to look for the bread she likes, a very long thin loaf with sesame seeds that is also very, very expensive (they don't call it Whole Paycheck for nothing)

When Janey spotted the bread, she dashed over to get it.  The look on her face was amazing.  It was pure joy.  She grabbed a loaf and put it in the carriage, and looked up at me with that look---the look that seems to say "Life is absolutely perfect!  I could not possibly be happier!"

Later, reflecting on that moment, I had a thought I've had a few times before.  I thought about how once in a while, Janey's autism gives us moments that we would not get with a typical kid, moments that are wonderful.  And then, because my default emotion is always guilt, I told myself "But what cost to her do those moments come at?  Should I really feel happy about moments like that when they come at the cost of so much to her?  Should I be overwhelmed with happiness that she can have pure joy over getting the bread she loves?"

And I decided---yes, I can feel happy about those moments.  They are part of Janey.  It isn't fake joy she feels.  It's real joy.  And her ability to feel joy like that is something that can only be a good thing.  The fact she isn't thinking at that moment the things most 10 year olds would be thinking,  thinking about how her mother is embarrassing her, or about what other treats she might get, or about all the many things I would have been thinking at age 10-- that doesn't matter. What matters is she has a chance to feel the moments of extreme happiness in life we all deserve.  And I rejoice in seeing her feel that happiness.

This comes back to the book I read in that I noticed that many of the most heartbreaking essays there were written by people whose kids are right at the edge of "typical", "normal" They were about kids desperate to fit in but never quite able to, kids struggling to do work at school they never quite can do, or struggling to make friends or socialize.  They were about children feeling left out and sad and feeling like they were not making the grade.

Of course, I wish so much it's hard to express that Janey was going to have a life closer to the typical life.  I wish she could learn to read, that she could get married some day, that she could have friends she could hang out with, that she could have all the things in life so many of us take for granted.  But she can't.  However, she doesn't seem to wish those things.  She isn't really at the point where she realizes what she doesn't have or won't have.  I don't know if she ever will.  Not that life balances things out---as we all learn as kids, life isn't fair.  But I am glad, in a way, she will be spared the heartbreak some of the children in the book felt.  And I am glad she can feel joy at times.  Especially after her terrifying health setback, I am so glad I was able to see that amazing smile and joy over a loaf of bread.  I will unabashedly, unapologetically treasure that moment.