Every Morning is a Triumph

I just got Janey on the bus, at 6:15 am.  As I walked in the house, I was beating myself up a bit.  Her hair wasn't as I'd like it, she had sneaked some onion and garlic chips and her breath betrayed that, she had on two different gloves, her hastily picked clothes were not the greatest look for her...it was not my finest early morning parenting day.  But then I defiantly told myself---NO.  Getting her on that bus at that hour was a triumph.  It was the kind of triumph all you parents of other kids like Janey have every day.

It was a triumph Janey got a full night's sleep, and woke up without protest.  Sleep is not something any of us take for granted.

It was a triumph that I got Janey dressed.  I felt guilty thinking how I should be insisting on her dressing herself more in the mornings.  But doing so would necessitate getting up about an hour earlier.  We are on a very tight schedule every morning, and I'll take her cooperation over her independence when it comes to quick dressing any day.

It was a triumph I did her hair at all.  I know there are a few tangles.  I hate that.  But as I worked to brush them out, Janey screamed and had the look in her eyes that let me know that if I kept going, there was no way on earth we'd be getting on that bus.  So I resolved to brush them out before bed tonight, and I did my unskillful braid hairdo, and we called it good enough.

It was a triumph I brushed Janey's teeth well---twice.  She allows a thorough brushing without complaining.  The second thorough brushing came after she found the chips while I rushed to get dressed myself.  I think she might still have a little onion and garlic breath, but so be it. I am glad Janey eats breakfast at school, but a little chip appetizer isn't a huge deal.

It was a triumph that Janey left the house with a coat, a hat, a scarf and gloves.  The gloves were two totally different gloves, both right hand ones.  They are approximately the 30th pair of gloves she's had this winter.  She doesn't keep track of things like gloves or scarves.  If I were to buy her a matching set every time an old set disappeared, our entire budget would be spent on gloves and scarves.  So finding two to put on is a win, a triumph.

It was a triumph we were on the sidewalk two minutes before the bus arrived, and Janey was happy.  I had to grab my phone at the last minute so I could put on the SpongeBob songs she currently needs while waiting.  If the connection had been down or if I hadn't been able to immediately locate my phone, we would have had a problem, to say the least.

It was a triumph she got on the bus on her own, and sat in a different seat than usual, as I saw the aide tell her to.  She is like Sheldon on "The Big Bang Theory"---she doesn't care for being made to sit in the wrong place.  But she did, without protest.

It is a triumph that she is off to school.

I think those who teach kids with autism understand the triumphs that every successful morning include.  To anyone else out there who might not, when you see Janey, hair not looking perfect, gloves unmatched, hint of chips on her face, when you see that, keep in mind the triumphs it took to get through the morning.  To the other parents like myself---here's a coffee toast to you. May you have many, many small triumphs today.

One year ago today

A year ago today, Janey had emergency surgery to remove her burst appendix.  The surgery was preceded by days of extreme sickness (the surgeon estimated it had been burst for 3 days before it was removed) and was followed by weeks of complications----a stay of three days in intensive care for breathing problems, another surgery to place tubes due to abscesses, being fed by TPN into her bloodstream for quite a while, much weight loss---it's hard to believe it all happened, looking back.

In a lot of ways, the health crisis changed how we look at life with Janey. To put it in a slangy way, we don't sweat the small stuff as much.  We focus more on making Janey's life happy and calm.  I think it's safe to say we decided to change our behaviors instead of trying to get her to change hers.  We did this at first because for several months, she was still very affected by the hospital stay.  She was, as the surgeon told us she would be, debilitated.  It was important to focus on very basic things, like making sure she ate and drank.  

To our surprise, life with Janey got easier, overall, when we tried less to change her and more to change ourselves.  That's not why we did it, but we realized that if she's happy, everyone is happy.  If we keep her calm, we all can live our lives a bit more.  

Of course, there's no miracle change.  There are still days when Janey screams a very, lot, cries constantly, gets frantic for reasons we don't understand.  But there are less of them, and they feel less desperate.  They don't seem to last as long or usually be as intense.

In the hospital, Janey watched "The Spongebob Squarepants Movie" about 50 times.  Since then, she's watched it maybe 100 more times.  That's a good example of a change we've made.  I used to always try to get her to watch new things, or, heaven forbid, not watch anything when watching TV was what she wanted.  Now, we let her watch what she wants, when she wants.  She doesn't watch more TV, I wouldn't say, but we relax and let her enjoy it, and enjoy the time it gives us.  Believe me, that was a breakthrough for me.  I always pictured myself with kids that shunned TV and instead played with wooden organic toys and begged me to let them get one more library book.  But that was me---my dream, my vision of parenthood.  

Janey sleeps every night with a pillow covered with a flannel pillowcase she got in the hospital.  I looked up just now to see the name of the charity that makes pillowcases for children's hospitals---it's Ryan's Case for Smiles.  Janey has never been attached to any object like she is to that pillowcase.  She looks for it the minute she comes in the house.  That's just one example of all the kindnesses we were shown at Mass General Hospital.  If you have to have a child spend almost a month in the hospital, that is the place to be.

I feel like this post is disjointed, and that is partly because my mind keeps drifting back to a year ago.  Of all the things I ever worried about with Janey, a severe physical health crisis was about the last.  I wish it all hadn't happened, of course, but it did, and the perspective it gave me has changed me.  Our kids, all our kids, are precious.  It sounds like a sappy card, but I realize you can't take a single day for granted.  Janey, I am so glad you are with us today.

One Afternoon

Janey gets off the bus with manic excitement, something I've learned over the years to be a little wary of.  She runs into the house, dropping her coat and hat and backpack as she goes, and dashes to the refrigerator, pulling out cheese and pesta and ketchup, and yells "Cheese, please, cheese!  Want to pour ketchup!  Pesto, please!"  I fix her multi-course snack, and she eats.  Then she asks for Angelina Ballerina.  I hold my breath as I put it on, and sure enough, after about two minutes, she starts screaming.  She stomps her feet and bites her arm.  As I walk over, she lunges toward me, teeth first, not exactly biting but hitting my chest with her teeth.  I pull away and say as calmly as I can "The TV is making you upset.  I am going to turn it off"  She flings herself onto her bed, screaming loudly.

I stop, take a breath, try to not fall into a useless despair.  I remind myself she hasn't had a mood this bad in a long time, probably a few months.  I tell myself to be patient, to stay calm.  I get on the bed with her and say "You seem very, very angry"  She screams more.  I pick up a few of her stuffed toys, which she never touches, and make them say "I am so angry at you, Mama, for turning off the TV!  I'm VERY ANGRY!"  Olivia Doll says it, Angelina Doll, Kitty Doll.  Janey watches for a bit and then repeats "I'm very angry!"  I rush to praise her.."Great talking!  You told me how you are feeling!"  She grabs my hand and bends my fingers backwards, while kicking me.

I get off the bed and say "I can't be on the bed with you if you are hurting me"  I walk away, keeping her within sight.  She screams and flails around.  Then she screams out "Want to watch Hercules!"  I say "I can't put on the TV until you are calmed down"  She screams louder.  I say "Would you like to take a shower?"  At this point, I'm counting the seconds until Tony gets home, and thinking how a shower would kill some time.  She screams back "WANT TO TAKE A SHOWER!" and so we do.  I don't get in with her, not feeling like being bitten or hit.  I sit in the bathroom and hope she wants a long shower.  She fiddles with the taps and makes the water too cold.  I fix it, and remind her not to touch the taps.  She does it again.  I tell her next time she'll have to get out.  She makes it hot and yells "FIX WATER!"  I get her out.  She is furious.

We go in the living room.  She says "want to watch SpongeBob?"  I ask her if she can calm down.  She responds by taking a deep breath.  I put on SpongeBob, unsure as so often if I'm doing the right thing.  She watches for a few minutes, and then punches the TV and screams.  I walk toward her and she lunges to bite me.  I block her.  I am out of ideas, out of patience.  She goes back on her bed, screaming.  She asks for the iPad.  I give it to her, and sit out of biting range.  There are ten minutes until Tony gets home.  She plays with the iPad for about 5, and then asks for cheese again.  I cut some for her.  Two minutes until Tony.  She asks for the TV.  I say no.  She screams and tries to put it on herself.  I hear Tony coming in.  I tell her Daddy is home.  He walks in the door and asks how things are.  I say "hellish"  I tell him I'm going to the store for a minute, and I leave, shaken and tired.

To the others out there living this life---how are we going to make it?  How are we going to get through the rest of our life that's like this? How can we help the kids we love so very much?  How can we keep them safe while keeping ourselves safe?  What are we going to do?

No Christmas Miracles

I am not sure why I always hope Christmas will be a better day for Janey than it is.  I guess I have a deep seeded, secret, well-hidden belief in Christmas miracles.  I think if I do things right, and believe really, really sincerely, something will work and Janey will have a wonderful Christmas.

Needless to say, the miracle didn't happen again this year.  I won't say it was a bad Christmas, because it was a very good one, in ways that were apart from Janey.  My parents were very generous and therefore the boys each got a present they very much were surprised by and loved.  The kindness of so many people allowed me to not have to worry about medical bills much, so I was able to get the kids some presents they very much liked from us,  too.  And we even had a bag of presents from an organization that provides help to families with disabled children, including hats and gloves for the boys and several presents for Janey, one of which she hasn't even opened yet.  The boys got into the spirit and gave us presents, we did our traditional cheese and cracker tasting, we had a great night at my friend Maryellen's house on Christmas eve, we had a beautiful tree and so much was terrific.  But Janey....

If the mood stablizers are working at all for Janey, they are working to stablizer her mood as bad.  She was cranky, screaming, hitting almost all day yesterday.  There were a few very brief happy moments, mostly while eating, but most of the day, it wasn't good.  She opened a few presents with extreme half-heartedness, mostly giving up halfway through unwrapping.  She did like a giant SpongeBob I gave her, and a fuzzy Care Bear that was in the present bag, but mostly she ignored all presents as usual.  Her screaming was the backdrop for most everything we did.  It was very wearing.

It's on days like Christmas I most feel for Janey's brothers.  They didn't sign up for this.  They deserve a great Christmas.  We are Janey's parents.  We DID sign up for this.  We are responsible for her.  But they aren't, and so often, their lives are so affected by her.  They don't say that.  They both thanked us for a great day.  They are wonderful boys.  But sometimes I feel awful for them having to always come second.

I think we are weary.  It's been a very long few months.  So many things have been tough, and then there has been hope followed by disappointment.  The Bradley Hospital stay turned out to be just respite---nothing long term was gained.  The new medication seems like a flop so far.  The state insurance help is now just another piece of annoying bureaucracy I soon need to figure out.  And there is always the screaming, the crying, the hitting.

I don't want to write such a negative post today.  If it were not for the amazing support and kindness of so many people, I think this post would not just be negative, it would be despairing.  And we are not despairing.  We are tired, we are discouraged, but we are hanging in there.  I guess that's good, for now.

So--a few pictures of our Christmas, and my hope that all of you had a wonderful Christmas, if you celebrate it.  Let's all look to the future and keep hope alive for 2015.