Summer Report

Roll out those lazy, hazy, crazy days of summer.  I guess.  I am not a summer person, as people who have read this blog probably know, but this summer hasn't been bad, as summers go.  There was the non-sleep period, which I will never, ever say is over, because I fear a jinx more than anything, but, well, it's better.  Janey has still been often getting up extremely early, but lately, she is into Netflix on her iPad, and watching longer movies, even ones she's never watched before, and it's allowing us to drowse a bit while she's awake.

The big difference this summer, of course, has been having Tony home.  It's wonderful.  I said just before the summer started that it was the first summer I haven't dreaded, and I was right not to.  Parenting Janey is really a two person job, and Tony and I are both more rested, even with the non-sleeping issues, than we were in past summers.  

Another very nice thing has been summer school.  Two years ago, I took Janey out of summer school in the middle.  She was miserably unhappy.  It was the only real time I'd ever seen her crying because she didn't want to get on the bus, and she would come home crying, and I was getting emails from the teacher a lot of the type that say "Do you have any ideas about keeping Janey happy?  Is there something different at home?" to which I always have an urge to reply something like "Oh, yeah, I forgot to mention that we moved because the old house exploded---it just slipped my mind!"  I'm just being sarcastic here, but I do tell teachers if something big is happening at home, and to be fair, I don't get that question often.  So we cut our losses that year, and I was gun-shy last year and decided to just keep Janey home from summer school.  But this year, I thought we'd give it a try again, and she's been VERY happy there.  Her (different than two summers ago) teacher seems great and he stays in touch about positive and less positive things, and he sent me a happy picture of her from Friday, which is something I very much love to get.

Janey is continuing to seem more like a teenager all the time.  Her most used phrase with me is "Want to go away?"  She says this any time I'm in her space, and her space is often much of the house.  I take it with a laugh, though.  It's cool to see her wanting space, and I want to give her as much as I can.  It makes me sad, a lot of times, how little true independence her life is going to have, and I feel like it's important to give her any agency I can about how she spends her time.  It can sometimes get a little severe, though, like when her brother Freddy came home from work and said hi to her, and she replied "NO! Want to go away?" and pushed him.  But I remind myself her vocabulary is limited, and she's getting her point across.

One interesting development is how Janey has been using the TouchChat AAC app on her iPad.  I started with it a couple years ago with great hopes.  Janey has never really used it to talk, though.  She likes it, and she says, many hundreds of times "I don't want to listen to CD" which might sound like it's saying something, but it's what you get if you hit the exact middle of each screen in a row.  I think she likes the way it makes a sentence, and she doesn't ever listen to CDs anyway.  But for a while, when Janey is very upset, I have been pulling up the feelings screen on the app and asking her to tell me how she's feeling.  She usually picks happy first, even when she's very obviously not happy, but then she picks something else, sad or frustrated or angry or tired.  And she calms down.  Like a miracle sometimes, she calms down.  It's like being able to label the feeling helps tremendously.  Today, for the first time ever, when she was upset, she went to the iPad and went to that screen herself, and 

calmed herself down.  I was very, very happy.  I wish she'd use the app more, though.  I use it often around her, and she easily remembers how to get to various screens, and it's always available for her, but she has made plain that's as far as she wants to go with it for now.  And if I pushed her more, I'm 

quite sure she wouldn't be as eager to use it in the limited way she does as she is now---that's my Janey.

Of course, what comes next is high school, and I am nervous day and night about that.  I feel confident we picked the right program for Janey, and I am very happy she can go where we wanted her to go.  But still...it's a new school, and it's a LONG bus ride.  It's on the opposite side of Boston, and if you know Boston traffic, you know it might well take an hour for her to get to school and an hour to get home, on tougher days, and some days, probably more than that.  She loves the bus and she loves rides, or we wouldn't even consider that, but I worry about her needing to use the bathroom while she's on the bus, I worry how she will react if the traffic completely stops the bus for long periods, I worry about other kids on the bus...I worry about everything.  I keep telling myself to wait and see how things go before all the worrying, but that's not my way of doing things, usually.

I was helped more than you know during Janey's no sleep nights by posting on the Facebook companion page to this blog, and reaching out to the other mothers in no sleep land, the ones, as Claire so incredibly well put it, awake at silly o'clock, as those hours in the middle of the night should be officially named.  Thank you, as always, for getting it, all of you wonderful people.  I hope you are having summers that are better than you'd worried they might be!

Mood Mirroring

Things have been stressful lately.  I won't get into all the ins and outs, but will just say this one source without getting political---if your retirement paperwork is not totally done and then the government shuts down, you don't get any retirement money.  Or any money at all.  We are fine for now, but it's not exactly fun. Add in literally about twenty other issues, and that's us lately.  But we are trying very hard to stay positive, and not just because we are Pollyannas.  It's because our moods so very much influence Janey's moods.

There are strangely many happy eggplant pictures out there.

I woke up this morning, nice and late as Tony let me sleep in, to a happy Janey.  A happy Janey is the most wonderful thing on earth---truly.  I wish you could all see her when she's happy.  Her smile is just plain amazing.  She smiles without any reserve.  When she is happy, any sadness of the past or future seems totally gone from her face.  She looks like you would look if someone told you you had both won the lottery and were going to live forever.  One of our favorite things to do is see her reactions to the little things she loves when she's happy.  One day, Tony told her he was making her some eggplant, in the middle of a happy day.  She replied "EGGPLANT?" in a voice of pure, pure joy and excitement, jumped up, started jumping up and down and hugged him over and over.  Over eggplant.

When Janey is that happy, you'd do almost anything to preserve it.  It's been harder lately to keep the stress out of our faces and voices.  Tony and I started talking just a little, about one of the myriad of things that are worrying us, and Janey saw and heard, and the look came across her face, the tensing up look, the look that is almost fear.  We quickly adjusted ourselves, said what we needed to say in happy voices.  She relaxed.

I can hear my own rebuttal to this all.  Life isn't all happy.  Stress and anger and fear are part of life.  That is true.  But the things that are worrying us are not anything Janey can understand.  They aren't anything she can do anything about.  And, to be honest, her happiness helps us.  It reminds us that life isn't all about our worries.  We need her happy as much as she needs to be happy.  So we do what we can to keep our own cares from her.

The inverse to Janey's happy moods, of course, are her sad moods.  Like the happy moods, not a single hint of past or future happiness remains when she is sad.  She screams and cries like it's the end of the world, because I think for her it feels that way.  She is overcome by her own sadness.  And we are overcome by it too.  It's impossible to feel happy when Janey is sad.  Over Christmas vacation, she was sad a lot.  She doesn't like times without school, or changes in routine.  We loved having her brothers home, and I know she loved seeing them too, but they changed the routine, changed the feel of the house, and that was hard on her.

The mood mirroring works two ways.  It's a feedback loop. We strive to keep Janey happy so we can be happy, we avoid making her sad so we aren't sad.  There's of course much more to it than that, but that's a part of it.  But unlike her, we can control to some extent our outward show of emotions, and we try to do so.  I believe in assuming competence.  But I barely understand the political back and forths, the state health agency constantly making us reprove we are eligible for the insurance supplement we get for Janey, the health complications of diabetes affecting Tony's brother, the school choice system which is complex and scary, the mental health issues that affect family members besides Janey, the need to eat and heat the house while we wait for the shutdown to end...I could literally go on a long time, but I'll stop.  I can't explain to Janey why it's harder for us to stay positive lately.  We can only try to keep her happy.

And in doing so, we can be reminded that when it all comes down to the nuts and bolts, we have a lot to be happy about. I'm not into unicorns and glitter and magic when it comes to autism.  Autism is autism.  You don't need to make it magical or better than the rest of us.  It's what it is---every one of us lives with challenges and strength, and Janey's autism provides some of hers.  But when we see her dancing in joy over eggplant, or a car ride, or a silly dance---we are reminded that the sources of happiness are all around us, if we let them in.  Aren't we all trying to ward off the sadness, to let in the happiness?  So we'll keep smiling, for Janey and for ourselves.

The start of the next part

Since I last wrote, a big change took place in our lives.  Tony retired from work, 30 years to the day after starting federal employment.  He is 56, so this is a fairly early retirement.  Having him retire early was a huge decision, mostly for financial reasons, but it was the right decision, I am quite certain.

On the day Tony retired, a thought kept running through my head---"The hardest part is over now".  That's where the title of this post comes from.  Of course, I knocked on wood, and of course I know that there are still going to be many tough parts of life.  But from now on, there are two of us to care for Janey.

The smile of a man 5 minutes into retirement!

About a week after Tony retired, I looked at him and realized he truly looked about 10 years younger than he had for the past few years.  Mothers get all the glory and sympathy often in this special needs parenting game, but it's hard to overstate all Tony has done over the years.  Especially the past few years, he was working a job that was extremely stressful.  He woke very early every morning, helped me get Janey off to school, went to work all day, came home, took over with Janey usually, took her for car rides and made her supper, then had to go to bed when she did so he could get up and do it all over again.  He often went days without any time to himself, save maybe his time on the train.  He did all this while dealing with a serious health condition (severe type 2 diabetes---he's been insulin dependent for many years).  Tony's brother lives upstairs from us and is increasingly disabled from the complications of diabetes also, and Tony helps him a lot too.  When Janey didn't sleep, often Tony didn't sleep, and there were so many days I simply didn't even know how he got through the day.

Financially, retiring this early is not going to be a piece of cake, but that isn't something we find nearly as important as our health and happiness.  As long as we can eat, have health care and have a roof over our heads, the rest is gravy.

I've often thought of how in cartoons, characters run off cliffs, but keep going along just fine until they realize they have gone off the cliff.  That's how a lot of our life the past few years has felt.  Not everything is within the scope of what I write about here, but suffice to say we've been running on fumes a lot of the time.  Despite Janey being our joy, our delight, despite her being far happier than she was during some darker years for her, the demands of special needs parenting are always there.  That is something it can be hard to explain to those who haven't lived the life, and can be seen as a complaint, as something I shouldn't mention because I should only emphasize the joy.  But I want to speak the truth here, and the truth is that it's hard.  It's very hard.  It's very hard having a child that will never, ever care for herself, that needs supervision that realistically only we as parents can safely provide when she is not in school, 24 hour, 7 day a week supervision, and that this will be forever.  I know my dying thought will be of Janey, of her happiness and safety.

And so we start the next part.  The next part has been good, so far.  It's the little things that are the most surprisingly special.  On the 2nd day Tony was home, after Janey went to school, after a long night when she didn't sleep well, we went back to sleep after she got on the bus.  We slept in until 10.  We woke up astonished.  It was the first time ever we have slept in together.  Ever.  Last night, we stayed up to see our beloved Red Sox win the World Series.  We didn't have to think for one minute that we should be getting to sleep.  We knew we could rest a bit today.  Those kind of moments are worth the change in income.  They are the kind of special small things I think our new life will include a lot of. 

And most importantly than anything, it's wonderful to see the joy having Tony home gives Janey.  Afternoons when she got off the bus were always a very tough time.  Now, Daddy greets her, and right away cooks her whatever she wants to eat.  Together, they blissfully eat things I wouldn't touch---fried eggplant, steamed greens, tuna salad---and Janey dances around with happiness. 

Here's to you, Tony.  We made it to the next part.

First day on the road

I'm going to try to write a little every day about our week long trip with Janey, to remember it and to share how it goes and anything I might discover about traveling with autism along for the ride!

This is the first trip we've attempted with Janey since she was 3, when she was diagnosed with autism.  Her diagnosis actually came soon after our last long trip, a 3 week cross-country one.  In some part of my mind, the part that likes to blame myself for things, I wonder if the trip had some part in her rapid decline at that point.  I don't think so, but for that reason and much more just because even short trips with Janey were tough for years, we haven't travelled more than a night or two since, and not much of even that.

For this trip, we will be gone 7 nights, in 5 different hotels.  There will be quite a lot of driving, as we go from Boston to the Toledo, OH area. 

We got on the road today about 9, and arrived here in Scranton, PA about 5.  What would be normally a bit over a 4 hour drive took us 8, but that was okay, as it was necessary to keep Janey happy, which, for the most part, she was.  Most of our stops were to deal with something that was upsetting her that swe couldn't do while driving.  She has her special pillow with her, and sometimes, it had to be next to her, while other times, it had to be out of sight in the luggage area.  I don't know why, I think only Janey's OCD knows why, but we stopped to fix that a couple times, as well as put in and take out her ponytail.  A few times, she screamed "WANT THAT SONG!" but wasn't able to say what song it was.  Luckily, I suggested a few songs and either got it right or made her think of another one that would work.

The most upset she got was in the hotel room, with her iPad.  She wanted to watch YouTube Kids, but I hadn't set the wi-fi yet.  She came close to biting me, but I evaded it and got the iPad going.  I think by that point she was just burnt out, and wanted to do something that felt like home, and once she did, she was calm.

We promised her swimming at the hotel, but she has fallen asleep before we could go, so we'll do that in the morning.  I hope she sleeps well.

Tony and I have talked about how this trip goes will be something we are paying close attention to, as what we hope to do when he retires is a lot more trips like this, to see the country.  We are low-key travellers, often happy with looking at car scenery, eating fast food and swimming in hotel pools, and if we can do that more in 5 years or so, we'll be happy.  If not, we'll make another plan, as Janey's happiness is a necessary part of our happiness.  We are encouraged by the many big smiles we saw today, on what was mostly a good start to the week.  Tune in tomorrow!