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.

Total Janey Time

Starting this week for a while, Tony has arranged his schedule at work so he can do the afternoon pick-up of Janey.  That is so wonderful it's hard to describe.  The drive back and forth to school has become increasing tough over the years.  I'm into my 14th year making that commute, through busy parts of Boston, with crazy Boston drivers, and lately, more often, a passenger that is disruptive, my Janey.  I feel myself re-energized just knowing I don't have to do that drive twice in a day.

I've decided, when Janey does get home, it's going to be Total Janey Time.  I've always thought one of the most important parts of the day as a parent is when kids first get home from school.  It's one of the reasons I haven't worked outside the home.  Kids need to reconnect after school, even older kids.  They need someone to listen to their stories, someone to take their complaints, someone to feed them.  I've loved being able to be that someone for the boys, and I've realize that has been missing with Janey, mostly because by the time I get home with her, I'm done for.  I often pass her off to Tony and rest a little, and she often gets crazy.  So as a trade-off, now she's going to get my best when she gets home.

What is Total Janey Time?  It's doing things with her that she loves, without trying one bit to make it a teaching time, a molding social skills time, a time for anything but fun and comfort.  It's what I've realized Janey is requesting when she constantly requests to "snuggle on Mama's bed"  And it's what I often don't do.  I seize on time with her to try to either teach her something or work with her on behaviors, or just try to do something with her that's MY thing, not hers, like reading a book or coloring.  Total Janey Time means snuggling her, playing the little games she loves with her, singing to her and just letting her be her.  We play Creep Mouse, we put our faces close together until it looks like we only have one eye, and I say "you only have one eye!" and she laughs, I sing clips of songs I know she loves, like "I went to the animal fair" or "John Jacob Jingleheimerschmit"  I don't try new songs or new games.  I clap her feet together and sing "chicks and ducks and geese better scurry", which I did once when she was about 3 and which she instantly loved for some reason.  We say our little routine "Let's talk about how much I love you!  I love you a..." and she says "million"  I say "I love you more than..." and she says "chickens!"  It makes no sense, but it makes her happy.  It's bonding, it's fun.  It's also about like you'd play with a toddler, and that is why I sometimes resist it.  It seems like it moves nothing forward.  But why shouldn't she have a time each day that's for HER?  She lives in a world she often doesn't understand, a world that I am sure is startling and stressful for her so often.  We all have things we do to center ourselves, to get back to feeling relaxed, and Janey needs that too.

After the first few days of this routine, Janey came in the door, and raced as fast as she could to "Mama's bed", a huge smile on her face, waiting to start the routine.  That was wonderful.  It's a huge reminder that we all need a time and place to feel completely accepted as we are.  It is what I think often gets left out of the day of a child with special needs.  We all want to help them learn, to help them understand and relate to the world around them, but that's a lot of work for them.  They need as much as any of us do to just have downtime.  I'm going to try hard to give that to Janey more consistently.

The laughing, oh, the laughing...

When I picked Janey up yesterday, she was in a quiet mood.  I didn't put music on in the car and I didn't try to talk to her, as she seemed to just need some down time.  That lasted about half the car ride home, and then she started to laugh.  And within moments, it turned from laughing to THAT laughing.  The manic laughing.  The laughing that I will go out on a limb and call the insane laughing, although that will forever brand me as a Bad Autism Mother.

One of Janey's teachers once told me she found the endless laughing tougher to take than the endless crying, and I loved hearing that.  It validated a feeling I've often had.  I don't know if I find the laughing tougher to take, as I am particularly sensitive to crying, but the laughing is in a lot of ways more unsettling.  Crying, although it's horrible to witness and heartbreaking, is understandable in a way.  We all have sad feelings, and Janey doesn't have a lot of ways to express those feelings, and she gets very frustrated, I am sure, and she cries.  But the laughing?  It seems to come from no-where.  It isn't in response to something funny, or anything funny I can see.  It just seems like some brain artifact, something organic and something scarily wrong.  I'm being very, very frank here.  It's endless, like a hearty laugh over a funny TV scene, but extended for hours and hours and hours.

Last night, it lasted until Janey went to sleep, from about 5 to 8.  Whenever she wasn't actively laughing, she was making her AHHHahhhAHHHahhh sound.  We were having a tense night, trying to get things completed we needed to finish for William's financial aide applications, and it was very, very hard to concentrate on anything with the laughing and sounds.  You can at least try to comfort someone that is crying, but when they are laughing endlessly, what do you do?  I helplessly ask "What is funny, Janey?" but of course she doesn't answer.  I ask her if she can be a little quieter.  Again, just asked for something to say, as Janey in no way gets that or responds.  Freddy finally can't take it any more and tells her to shut up.  That is the kind of thing a sibling can say, but a parent can't.  She ignores him too, of course.

And I feel ridden with guilt writing about this.  How can I be so cruel as to be annoyed with Janey for LAUGHING?  And I respond to myself---let anyone try it.  After a while, they will lose all their understanding, their acceptance, their noble determination to be the right kind of autism mother, the kind that only celebrates the differences, that doesn't judge, that is endlessly understanding and calm and perfect, and they will just feel like screaming.  I challenge them not to.  God durn it, I accept Janey, I love her, I do my best, but I am not perfect.  And the laughing, oh, the laughing....

Christmas night

So Christmas 2012 is almost over.  As is almost always the case on Christmas night, I feel a little let down.  There's such a buildup to Christmas, and it's over so fast.  But it was a very nice one.  We had a great day, and gave the kids more presents than we usually do---we are usually very restrained in that, but I decided this year to put more focus on getting them, especially the boys, things they wanted and needed.  It was fun.  We had a huge amount of special food, a great visit last night with our dear friends for Christmas eve, Janey and I had as much Christmas music all year as can be imagined, and overall, it was a very good Christmas.

The picture is Janey watching the Christmas karaoke VHS we watch every year at our friend's house.  It's kind of a joke with the kids now, as it's very hokey, and has very cheap visuals, and does strange versions of each song, and then once they've done the long, long song, a screen comes up that says "Now everyone sing!" and we sing it all over again.  Lots and lots of laughs, but lots of fun singing together too.  Janey had been napping, and woke up when we were singing, and she was in heaven---it was her dream to wake up to a room of people belting out Christmas music!

Still, with all this being said, there is sadness for me at Christmas.  I don't think it will ever totally go away.  Janey has no real awareness of the holiday traditions.  She doesn't get Santa, she doesn't have any curiousity or interest in her presents, she can't count the days until Christmas, she isn't sad it's over because in most ways she didn't really understand it was here.  She was manic in the night, laughing hysterically for hours, probably because we weren't careful and forgot and let her have lots of chocolate milk, and chocolate and other caffeine is the one solid food connection I've ever found with her---it makes her crazy way out of proportion.  She cried at points today.  We were all exhausted by afternoon, but we couldn't nap, because she had to be watched.  She had pullup issues.  She was, basically, herself.  And she always will be.  She is delightful, sweet, interesting, but she is also autistic and intellectually disabled.  She is never going to get Christmas the way I dream of.  Like so many things, it's my dream, not hers.  It's my sadness, not hers.  But my latest way of thinking is to admit the sadness, and try to move on from it.  It makes me sad that she doesn't understand Christmas.  It makes me very sad.  But Christmas isn't her getting it.  Christmas is, in the words of the Grinch, a little bit more.

Janey at School

Here's a picture of Janey at her desk at school!  Yesterday her class had a publishing party.  The class had written stories about a memory that made them happy, and you could go around the room and read the stories.  Janey's teachers had made up a book on the iPad for Janey about how much Janey loves the plants that have been put around the courtyard at the school.  They had great pictures of her, and Janey could turn the pages to show the book to me.

It's always hard going to events at school, as I've written about.  This isn't anything in any way the school does.  Janey is always included.  But it's just hard being faced with the differences between Janey and all the other 2nd graders.  It really hit me yesterday.  Janey is like a toddler in a class full of big kids.  When she saw me, she ran over to me and wanted to be held.  I gave in and did so, because I know she wouldn't have stayed at her desk.  She was in her manic laughing mode, and I was trying to quiet her while the teacher was talking, although I'm sure the kids are very used to her being noisy.  Later I took her for a walk around the school, as she was getting upset.  She very much doesn't like her routine changed, and I am not supposed to be there in the middle of the day.  I mentioned this to her teacher, and I loved how she understood.  She said "but I know you'd feel awful if you didn't come" which is exactly true.  I like it when people get it, and don't try to fix things that can't be fixed.  I have to go---I would never not go to school events.  But it's never going to be easy to do so.

There's great parts about being around the school too, of course.  I get to see as I always do how many people know Janey and are so good to her, and how happy she was walking around the school.  The school is shaped like a bit doughnut with a courtyard in the middle, so it's perfect for talking a walk around when Janey needs that.  She sees people, they say hi and wait for her to answer, which is something terrific for her to work on.  The whole school is part of her education.

And that's the story of my life.  There is always some sad with the happy.  I love the school, I love my Janey, but I'd be lying if I didn't say I sit there seeing the wonderful kids in her class that have written long pieces about interesting memories and I have a deep sadness that Janey can't do that.  I see them sitting at their desks, eager to answer questions, learning so much so easily, it seems, and my heart breaks a little.  I love the Janey I have, but I still have dreams of the Janey I won't ever have.  I wish I could say otherwise, but I can't.

ABA---progress?

We are a couple months into ABA now. I am really not sure what it is or isn't doing. I love Christina, and Janey is more cooperative during the ABA than I ever thought she would be, but I don't know if much of it is carrying over. She is talking about the same amount as ever, I think, which isn't that much. She has started using more long phrases copied from videos, probably because she has gotten much more interested in videos. I do see that as progress a bit, as I think before she couldn't follow them enough to be interested. She uses the phrases appropriately often, such as coming up to me when she wasn't sure where I was and saying "I was looking all OVER for you!", or, when she was upset and wanted comforting, "I will read you a story" as Kipper does to a gosling that gets stuck in his house. But it's still so hard to get her to ask for things she wants, and she still almost never answers questions. Her basic knowledge is still so limited---I am not at all sure she really knows any colors or shapes, consistently anyway. She still has days when she cries all day pretty much, but also a lot of days where she is fairly happy. She has been asking to go to school a lot since school ended. I think she has absolutely no concept of time, and it's impossible to explain to her that it's summer and we will go to school again after the summer.

She often anticipates my answers and puts them in herself---like she will ask me for a cookie and then will say "We ran out of cookies". I think that is a a good thing---she is thinking about what someone might say back to her, but also it could just be repeating a phrase she often hears.

When she is happy she laughs non-stop. It's almost like the non-stop crying in reverse. It's less hard to hear, but still sometimes quite inappropriate.

She is so beautiful. It shouldn't matter to me, but it does. She is just stunningly gorgeous.