Will she enjoy it? Will it benefit her?

Yesterday, on Halloween, I found myself desperately wanting to take Janey trick-or-treating.  I loved Halloween as a kid.  It was a day where everything was turned on its side, where you could go to people's houses and knock and get candy.  I loved the whole process, especially coming home with a big bag of candy and sorting it out and looking it over.  When the boys were younger, I adored taking them out on Halloween.  I read a few days ago about a local college having something called "truck or treat", where a lot of cars park and you can go from car to car trick-or-treating, and I made plans in my head to take Janey.

Yours truly, with my sister and father, on a long ago Halloween

However, we didn't go.  Janey is a very early to bed girl, and she was very tired by the time it was dark.  She was also very engaged in watching "Mickey Mouse Clubhouse", as we recently got new channels on the TV.  I struggled with myself---should I push for it?  Should I take her?

When trying to decide, I used a few questions that I've recently started to apply when deciding what activities to do with Janey.  Will she enjoy it?  Will it benefit her?

Well, she might enjoy trick-or-treating a little, but at that particular time, no.  She really doesn't get the point of it, she was tired, and when I asked her (probably over and over) she showed no interest.  She's very capable to letting us know when she wants to do something, and she just didn't want to.

As for a benefit, well, no. Chocolate is the one food we don't give her, and going someplace to get a bag of candy that most certainly would include chocolate, which we'd have to fight to keep her from eating---no.  It could be argued that she might pick up some social skills, but it's a hugely isolated set.  Most of the time, you can't go around to people's houses or cars and say "trick or treat" and then get candy.  So any argument that it would benefit her was pretty weak.

When I started applying the questions to activities, it opened my eyes.  There's a lot I'd like to do with Janey, or like to have her get to do, which frankly are things that I want her to do, not things that will give her enjoyment or benefit her.  This past spring, we tried Special Olympics for a bit.  It might be great for some kids, but for Janey?  No.  She had no interest in it.  She is not competitive, she didn't interact with other people there, she didn't get exercise from it as she wouldn't readily participate.  It was nice to get outdoors, but we could do that any time and place.  I realized it was ME who wanted her to be in it, for reasons that had little to do with Janey. 

Janey very happy, headed to the store.

I'll contrast that with an activity Janey very much enjoys and benefits from---the daily walk to the store.  The store is a convenience store near us, which changes names constantly but is currently a 7-11.  The after-school walk there is Janey's favorite ritual.  She asks for it every day.  When we get out to the driveway to start the walk, she is literally dancing with excitement.  I hold her hand and we walk the short way to the store.  She goes in and looks over the chips for a long time.  She only ever picks out the same two or three kinds in rotation, but I know how just looking over a shelf of choices can be a thrill.  When she picks her chips, I then switch the big bag she picks for an identical small bag, and we talk about how they are the same.  She takes the chips to the counter, waiting in line if she needs to, she is patient while I pay, sometimes she'll say thank you to the cashier, she gets a lot of smiles, and then we walk home.  She eats the chips in the driveway while the colony cats of the neighborhood circle her legs to get dropped chips.  She is happy and engaged.  She is also learning---learning the rules of walking along a busy street, how we exchange money for products, how we act in stores, how we treat animals---lots of things.

There are other activities Janey enjoys and benefits from---car rides with music, cooking with Daddy, picking out and putting on videos, going to the library to pick up the books I've ordered online and of course going to school, the big one. 

I wish that Janey could participate in more activities.  But the truth of it is, when I think about it, I wish that for ME.  Not for her.  Her life, when I allow myself to broaden my view of what an activity is, is pretty full already.  In this age of Facebook, I've realized that sometimes what I've wished for are Facebook photo opportunities, a little.  I'd like her to do more of the "normal" childhood things.  But she is 13.  She's growing up.  By that age, she knows what she likes and doesn't like.  I think about myself.  If I had been made to participate, at that age, in sports, or in an art class, or in a dancing class, all things I have little interest in or talent for, I would have hated it.  So they would have failed the enjoyment question.  But would they have benefited?  Truthfully, by that age, no.  I am much the same person now I was then.  I don't like sports.  I am not artistic.  I don't like to dance.  And I knew my mind by that age.  I knew my limits.  Some might argue this point, but from what I've learned from my sons, kids by that age know what drives them, and Janey is not different from other kids that way.  It's very, very easy to tell what she loves and what she doesn't.

As Janey gets older, as her own path in life starts to become more defined, I need to give her the same respect we all deserve, the same right to find her own passions.  It's even more important for me to follow her leads, because it is far too easy when a child doesn't communicate in traditional ways to impose our own will on them.  I'm going to try to often stop and ask---will she enjoy this?  Will it benefit her?---and use those answers as my guide.

If Janey had her way about holidays...

This morning, Tony left very early to go to New York State to get Freddy and his friend Cheryl and bring them home for Thanksgiving.  This was a change in routine, as I got Janey ready for school and got her on the bus on my own.  Janey never says much in the morning, but today, she said even less.  She went through the stages of getting ready fairly cooperatively, but she kept looking at me with a confused and wary look.  I explained to her as best I could that Daddy was getting Freddy, that he'd be back later, that her brothers were coming home today, that school was going to be shorter than usual (they have a half day), that we'd have a nice big meal tomorrow, that school would start again Monday---all that.  And I thought, as I've had many times, that Janey would prefer there to be no holidays at all.

I don't know that for sure, of course.  But I strongly suspect it.  Holidays, to her, are upsetting changes in the regular routine.  They involve Mama and Daddy doing things they don't usually do, and not being available when she expects us to be.  They mess up the school days and weeks.  They have people trying to get her to do odd things, like blow out little fires on pastry, hang socks up at night, go through many steps to open up something she doesn't want or care about, dress up in odd costumes and go to houses and ring doorbells---a lot of weird stuff.

I think sometimes if Janey was an only child, we'd pretty much have birthdays and Thanksgiving and Christmas be much like any other day.  There are parts she likes, of course.  Christmas music is one of her favorite things on earth, and in fact "Frosty the Snowman" got the only smile out of her this morning I could get.  She enjoys a good cake as much as anyone.  And she'll be glad to see her brothers.  But overall, holidays stress her.  But she isn't an only child, and even if she was, Tony and I are people too.  We'd want some holidays in our lives.

The combination of autism and holidays, or Janey and holidays anyway, bring on two big feelings for me---guilt and sadness.  The guilt comes on, strangely, when I do things to make holidays less stressful for her.  If I don't get her more than a token gift for Christmas, because she hates opening presents and has no interest in 99% of anything material, I feel guilty that she has nothing under the tree.  If I don't take her trick-or-treating, as I didn't this year, I feel guilty that she is missing out on something I loved as a child.  The guilt is foolish, I know, but it's there.

The sadness---that is on me.  It is my sadness.  Janey is not sad that she doesn't fully get and enjoy holidays.  But I am.  Holidays, in a lot of ways, are for parents.  We look forward to seeing our kids pull treats out of the stocking, gather huge piles of candy and sort them, blow out candles as we wipe away tears and think about how fast they are growing up...holidays are the Hallmark moments of parenting.  And I admit---it makes me sad, in a completely selfish way, that Janey would prefer to skip so much of what I want to experience with her.

Thanksgiving is one of the easier holidays.  It involves mostly eating, which Janey certainly does like.  It starts the season of Christmas music, which can never start too soon for her.  She even sometimes likes the parade on TV a bit.  So, we'll try to keep the day as routine as we can for her, while sneaking in bits of the parts she will at least tolerate.

Happy Thanksgiving 2016 to all of you.  I am incredibly lucky to have found this community, and I am thankful for those who read this blog, extremely thankful.

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.

It's a Happy Day!

The title of this post is what Janey just said to me a minute ago.  And it's the truth---it's a happy day, and it's been a pretty happy last 4 or 5 days.  This fact is amazing considering the fact that we are in the middle of Boston's snow nightmare.  It's snowed and snowed and snowed and snowed.  There's at least 40 inches on the ground.  There was no school today or yesterday, just like last Monday and Tuesday.  Eight snow days so far this year.  We've all been stuck home together since Saturday morning.  And yet, Janey has been happy.  A joy, really.

What's going on?  I don't know.  I'm knocking on wood every few minutes.  I have a few theories.  One is that Janey's new medication is working, working very well.  The dose was raised a few weeks ago, and it's the kind of medication that takes a while to build up in the system.  Maybe, finally, whatever has haunted Janey's brain and made her so unhappy so much of the time has been calmed down.  The medication is an anti-seizure medication also used for mood disorders.  Maybe Janey was having seizures we didn't recognize, or maybe she truly is bi-polar.  Or whatever she is/was, maybe we finally hit on the right combination of medication.

Another theory---a lot of time at home with us often seems to, after a while, make Janey happy.  She likes routine, and if she's going to school, she likes it to be steady, so that would seem to mean that being off and on home would not make her very happy.  But we have all been home, and stuck in the house, and spending a great deal of time together.  I remember a few other times that that was the case, and how after a bit, Janey seemed to make jumps forward.  Her talking would get better and her understanding would seem to increase.  Maybe a lot of one-on-one constant attention from two adults and one near-adult is something very good for her.

And maybe, it's just random.  Janey's moods come and go.  She's had wonderful mood spells before, and this might be just another one.  I hope that is not the case, although I'll take what I can get, but I'd rather that something has changed, that something has happened that will actually last.

Janey's talking has improved lately too, something that hasn't happened for years.  It's not something you'd probably notice if you didn't know her very well.  But she is suddenly making statements.  She will say something like "The cat is here" or "I am on the bed" or "I see a book".  That just hasn't happened much in the past.  A cute example from today---Janey said to Freddy "It's Halloween!"  A statement, although not really accurate.  Freddy said it was nowhere near Halloween, and Janey said, just as cheerily "It's not Halloween!"  The very best statement---the other day, Janey was doing her rounds around the house, reciting videos, when suddenly she said, in a completely regular voice, not sing-songy or echolalia sounding "I love you, Daddy".  Well, that was a moment.  Needless to say, Tony was very, very happy.  And I was a little jealous!

It hasn't been perfect, of course.  Four or five times a day, Janey is still getting very upset, screaming and sometimes biting her arm or trying to hit us.  But these episodes are getting shorter and shorter.  And I've been able to distract her, by suggesting almost any activity---watching TV, reading a book, looking out the window.  That is very new.

Whatever it is, it's been wonderful.  I've written so many upset and sad and depressed and downbeat posts that it's great to be able to sincerely write a happy, upbeat one.  This snow period is something else again, and we are expecting two more storms soon.  But if the snow somehow brought in Janey's recent moods, I say---let it snow.

Trick or Treat or Not?

Halloween was my favorite day of the year growing up.  It seemed just plain magical.  You dressed up, went to people's houses, knocked on the door and they gave you candy.  What holiday in the world could be better than that?  Since we lived in the country, people got around to trick or treat by having parents drive them.  I used to think that the only thing in the world that could make Halloween better is to live in a place with LOTS of houses close by, so you could by walking get to TONS of houses and get tons of candy.  Bringing up my boys in a suburb-like part of Boston, that came true.  I loved every Halloween when they were little enough to go out----here's a picture of them looking extra scary one year!

However, with Janey, it was never as straightforward.  She went out with the boys once she was old enough, and I think I can remember her enjoying it when she was 2---excitedly saying "Treat or treat!" to people but not getting the candy part, which was cute.  But then she regressed, and although we still took her out with the boys for a few years, she was not really interested.  She often wound up in the stroller just observing.  Once the boys were big enough to go out with friends instead of us, I would try taking her to a few houses, and usually, she would pretty quickly balk and cry.  Last year, I took her to just one house, and she was not at all happy with that.  And so, this year, I'm not going to try.

I have to admit that it's hard for me to give up on Halloween with her.  It's hard to admit that she really has no idea what it's all about, that she doesn't enjoy it, that trying to get her to participate is much more for me than her.  She doesn't like to dress up, she is scared walking around in the dark, she isn't hugely motivated by candy unless it's just the kind she wants, and she hasn't got the ability to anticipate the fun, which I think is what makes holidays the most exciting as a child.  I remember counting down the days till Halloween every day of October, and when the day actually arrived, it would just seem incredible that it was there.  I'd daydream and daydream about the candy, about trading with my sister, about the way that bag full of treats smelled.  Janey isn't able to do that, I don't think.  She isn't going to feel left out not going out.  So why is it so hard for me?

I think as parents, we feel somehow like we should be completely altruistic.  We like to think we do things like helping Santa or buying birthday presents or making up Easter baskets to make our kids happy.  And we are right, but we also do it because it's fun, because it's a way to step outside everyday life, because we want to relive our childhood a little.  I don't think we are wrong to do things for our own joy some.  Not at all wrong.  That is part of what makes parenting a child with autism a challenge.  Some of the built-in joys of parenting aren't automatically there.  There are other joys, to be sure.  There are alternate joys, and they are real and wonderful.  But I will admit---I wish tonight I was dressing up Janey in a costume.  I wish she had woken up thrilled that the day was finally here.  I wish she was going to be fighting to keep on going to another street, even when she could barely hold all her candy.  I wish we were going to be negotiating over how much she could eat before bed.  I wish all that, and I will admit it.  I wish it for me, selfishly.  I wish it for Janey, as it's a joy she won't get to have.  I am struggling now to think of a way to close that is upbeat, and at the same time saying to myself "Get over it!  It's a minor issue in the larger scheme of things!"  So I'll let that voice of reason close for me.  Happy Halloween.

Halloween

This morning, Freddy told me this is the first year Halloween means nothing to him.  He's a sophomore now, and probably beyond the trick or treating age, or the dressing up age (although some kinds at his school still do, but it's mostly a 7th and 8th grade thing).  As he was commenting on that, his older brother William said "Today is Halloween?" That brought it home.  That age has passed for them.  And that made me think about Janey, of course, who has no idea today is Halloween.  Do I dress her up, although she doesn't much like being dressed up?  Do I take her trick-or-treating, although that has scared her the past few years when I tried it?  Do I give her candy, although chocolate past noon makes her stay up all night long?

A great new blog about a family starting their journey with autism talked about this issue---give it a read here.  It's a tough decision.  It addresses one of the issues that isn't unique to families with autistic kids---how much of what we do with kids is driven by our own needs to recreate parts of our childhood we loved, or to try to fix parts of our childhood that were imperfect?  It's impossible, I think, not to do that at all, but in the case of autism, it's more problematic.  Dressing Janey up or taking her out in the dark to go to people's houses decorated with scary spiders and skeletons puts her in a situation she doesn't understand at all, and one that might totally terrify and confuse her.  Thinking of it that way, it seems like a no-brainer.  But there's that part of me that says "But Halloween is such a special time!  I want Janey to be a part of it!"  Which in her case, of course, means I want to be a part of it, because she won't be, not in a meaningful way.  I want to recreate that feeling from childhood of how it was to have one night where all the rules were suspended---where you could go to random houses, ring their doorbells and get candy.  I remember counting the days, and when I woke on Halloween morning, feeling truthfully more excited than Christmas morning.  I remember my fantasies of someday living in a suburb or city, where I could get to a lot more houses than you could in my rural town, where you had to be driven to trick-or-treat.  And I did live that dream, with the boys, for a few years, before they were old enough to go out on their own.

Autism changes a lot of things in a family.  In the scheme of things, missing out on recreating childhood memories is a very small, selfish thing to be thinking about.  But I do.

Just Pictures!

It struck me I've never put any older pictures of Janey here, from "before", before her regression.  Here's a few, and some more recent ones.

All eye contact here!  And pretty darn cute, I must say!

Making great eye contact, and loving music already!

Above is William, Janey and Freddy, when she was two, I think.

This one and the one below show the autistic look she developed at around 3---not all the time, but often.

Janey loves her Daddy!

She was very excited to dress up for Halloween that year, when she was 6, but when we tried to trick-or-treat, it was a no-go!

Halloween!

Janey came up to me just now and said "Halloween!" in her voice that means "I want Halloween right now!" Then she said "custom" which I figured out meant "costume". And after that "Peter and the Wolf!" A nice golden week sequence. I have no idea where she has ever heard of Peter and the Wolf, and I've never heard her say "costume" before. And last Halloween, a brief attempt to get her in a costume and out trick-or-treating didn't go well at all. But still... I did my best to explain Halloween is a once a year kind of thing, and if we went trick-or-treating right now, we'd strike out, due to a lack of candy preparedness, to say nothing of how people would not like to be disturbed in the midst of the Super Bowl. Janey didn't get much of what I was saying, I'm sure, but I enjoyed the whole conversation, and she seems satisfied with my answer.