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Thursday, February 25, 2016

A Tale of Two Weeks

As we put Janey on the bus this morning, watching her sing and skip her way happily out the door, we shook our heads when thinking of how drastically her behavior can change from one week to the next.

Last week, for about 5 of the days anyway, was incredibly tough.  Janey was screaming almost from morning to night.  Nothing made her happy.  She wanted only to watch videos, and then to frantically change to another video the moment the first one started, and to ask for food and then want a different food the minute we got it.  Even car rides, usually the last resort that always works, didn't always work.  We were in despair.

And then---a transition period leading to back to school.  This week, I've gotten good reports from school every day, and home has been a delight.  Truly, truly a delight.  Janey is all smiles.  We are having a huge amount of fun with her.  She's getting into new music every day, and last night, coming back from a ride with Tony, they were both singing songs and laughing, bonding in a way that had nothing to do with autism and everything to do with just liking the same things.  The few times she's gotten a little upset, one play of her favorite new song (Immigrant Song by Led Zeppelin) has cheered her right up.

Janey's school, not fancy, but a great place
What happened to cause the huge turnaround?  Well, the big one is school.  Janey is far happier with a school routine.  Her teacher, Ms. Erin, is great, as are all the staff members I've met.  Janey is a challenge, even in her autism-only program.  But they meet the challenge and constantly think of new ways to work with her.  And we, having the time she is at school to regroup, do better dealing with her once she gets home.  I think other factors helped Janey move out of her funk, too.  One was me going away, and just having a change of parenting for a bit, and then going on an overnight treat trip to the great inn we were at.  The weather made a difference.  Janey needs to be outdoors as much as possible, running around.  But all that doesn't quite explain the change.

I think a good percentage of what drives Janey to be happy or be sad is something we just don't get.  She might have pains she can't explain to us.  There might be something worrying her that she has no way to tell us.  She might be having a flare-up of OCD type thoughts and needs---that seemed to be showing itself in the subtle ways it does with her last week.  She could be bored.  She could be angry.  She could just be a pre-teen annoyed with having to spend so much time with her parents.  Often, there is just no way to know.

Tony and I talked this morning about how we should approach another tough spell.  There are some things we can do.  One big one is changing things up.  If she's in a terrible stretch, maybe we can somehow go away for a night, or take her on a big day trip somewhere new.  We can, if the weather at all permits, get her to a beach---that seems like therapy to her (and to us)  We can't make school start back up, or help her with issues we don't know are happening, but we can ride it all out, with hope that it won't last forever.  That might be the key.  When you are in the middle of a horrible week, it is hard to see past it, or to remember there was ever better times.  But the bad times, overall, are not as frequent as they once were, and spring is coming.  We'll get through this winter.

Monday, February 22, 2016

Back from the end of my rope

Last week was school vacation week here in New England.  It couldn't have come at a worse time.  Janey had been in a mood for a few days when it started.  She was on edge, screaming much of the time, not happy at all.  Then, the first weekend of vacation, it got extremely cold, the coldest it's been in Boston since 1957.  It wasn't the kind of weather we could get Janey outside in.  She was displeased.  She spent a few days switching hysterically from one video to another, screaming when we didn't immediately understand her, biting her arm and generally being very, very unhappy.

I had planned for quite a while to get away for a few days during the vacation week.  Tony had taken the week off work, as it's been a traditionally very hard week for years.  I was planning to go up to Maine and visit my parents on Wednesday, and then Friday have a long-awaited special treat getaway weekend at an inn as a early birthday gift from a dear friend (thank you, Julie!)  I was (and am) looking down the barrel of, let's just say, a milestone birthday, which would have been stressing me without any tough Janey times.  And I kept thinking---I can't go.  I can't leave Janey here with Tony alone.  But on the other hand, I kept thinking---I have to go.  I NEED to go.  I felt at the end of my rope, hanging on by a single thread.  Each time Janey screamed, I tensed and felt waves of stress and despair wash over me.  I felt like I couldn't take one more second.  But I kept telling myself "I can't go.  I can't leave Tony to deal with this"  Tony, who I will right now nominate for husband and father of the year, kept telling me I should go, that he would be okay, that he'd manage somehow.  It's hard to even explain my state of mind as I tried to decide.  It wasn't sane.  But finally, after getting Tony to promise that if it was too hard, he'd call and I'd come back, I did go.

And Janey was fine.  Not perfect, but fine.  She often seems to do a little better when it's just one of us with her, because all the attention is focused on her, we think.  Tony took her for lots of rides, changed her videos as demanded, and slept when she slept.
Janey views the sunrise

It took me a little while to calm down once I left.  I took a bus to Portland to meet my parents, and the bus ride helped.  I sat and decompressed, and played word games.  By the time I reached their house, I was much, much better, and by the next day, I felt great (although I woke with a horrible headache, probably from all the days of stress)  It was great to have a few days with my parents, and then a few days at an amazing inn with my friend and her fiancee.

Crescent Beach, Cape Elizabeth, Maine
Tony and Janey came up to the inn on Saturday night.  Tony got a chance to relax hanging out with the friends, and I took care of Janey, and by the time she got there, I was looking forward to seeing her very much.  I felt able to cope again, to think of ways to keep her distracted and happy.  We had several showers in the room's huge shower, baths in the big bathtub, we walked to the empty beach at sunrise, we spent time at the bonfire outside in the evening.  We had fun, because I was able to relax enough to have fun with her.

I learned a lesson, one I've tried to learn before, but I think this time it really will stick.  Sometimes, I really do need to take care of myself to be able to care for Janey.  I don't need to be a martyr to care for Janey, to love her.  We don't have a lot of respite, but Tony and I can switch off at times and allow the other party to get a breath.  And Janey will manage.  The toughest times don't last forever.  They come and go.  And I am much better able to to be a creative, patient mother if I am not at the edge of the cliff.

Now, to face tomorrow's birthday and the start of being AARP eligible.....

Friday, February 12, 2016

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?

Wednesday, February 10, 2016

A full life vs. the trifecta

It's the doldrums of winter.  It's hard for everyone, but I'm realizing that it's harder for Janey than most.  I think the next big challenge we are facing is how to give her an interesting life, a meaningful life, a full life.

I think about myself at age 11, or my sons at that age.  Life gets pretty interesting around that time.  You are old enough to have your own interests and passions.  You have made friends---friends that might become lifelong friends.  You go to their houses and they come to yours.  You are starting to be able to be out in the world by yourself.  You are turning into the person you will be for life.

Then I think about Janey's life at 11.  She goes to school.  She comes home.  That's about it.

There are many, many barriers to giving Janey a more meaningful life.  The big one is that she has the trifecta of autism, severe intellectual disability and behavioral issues.  Any one of those alone is tough enough, but the three together cause barriers to almost any organized type activity we might want to pursue for her.  I can't tell you how many times I've heard about a new possible class or program or camp or so on that might work for Janey, only to look into the details and find that it would be impossible, due to one or more of her challenges.  Saturday special needs city programming?  You have to be able to be in groups of 4 kids to 1 adult.  Music lessons for kids with autism?  You have to already know how to play an instrument and have to be able to read music.  So, so many camps?  You have to be toilet trained.  You have to have no self-injurious behaviors.  Hundreds more promising sounding enrichment activities that are "inclusive"?  Inclusive if your child can follow directions, not run away, read, write, not need constant supervision.  Respite houses for the disabled?  Not for kids that need one on one care.

So I say---okay.  We'll do it ourselves.  We will enrich Janey's life.  During recent snow days, I woke with a determination to give Janey an interesting day, a full day.  And every attempt to interest her in anything other than videos was met by screaming, by her biting her arm, by fury, or if not fury, complete disinterest.  I tried---reading books, playing with toys, involving her in cooking, putting on a children's yoga video, taking her out in the snow---I tried everything I could think of.  Janey was not interested.  Part of this, I think, is that in some deep ways, she's a regular pre-teen.  I'm her mother.  I'm not who she wants to hang out with.  And part of it is the combination of the trifecta.  The autism makes her not that interested in new activities.  The intellectual disability makes it hard for her to understand so much---how to use toys, how to hold a writing utensil, how to understand what is read to her.  And her behavioral issues make her prone to lashing out when the first two kick in.  I try to put myself in her shoes.  What is someone tried to get me to do something that I am not interested in and didn't understand?  What if someone proposed a fun day of doing calculus equations?  I'd be lashing out pretty quickly, and I don't have behavioral issues.

So what do we do?  I don't know.  We do what we can.  Janey's favorite activity is going for car rides while listening to music.  She adores doing that, and we do it as much as we can.  Tony takes Janey on many, many car rides to nowhere, with mix CD playing.  It's wonderful to see Janey during these rides.  She has strong opinions about music.  She doesn't like everything, but what she does like, she loves.  We put a lot of time into finding her new music she might like, and it's time we all enjoy.  But we can't always ride in the car.  I put a video of Janey on my Facebook companion page (I can't figure out how to put it here, but you can see it there if you want) asking for a car ride last night.  It was one of the rare times Tony had to say no---he was exhausted and the car was covered with snow. After the part shown in the video, Janey frantically paced back and forth asking to put her coat on and go in the car---for an hour, until she went to sleep.  It broke our hearts.

I don't have answers here.  I don't know exactly how this problem can be fixed.  But I must keep trying.  Janey needs a full life.  I owe it to her to find a way to give her one.

Tuesday, February 2, 2016

Groundhog Day

It's Groundhog Day, a day that has perhaps become more associated with the movie of the same name than the actual big rodent seeing his shadow or not.  I love the Bill Murray movie.  I've watched it many times, and today was reading a lot about it---theories as to what it means, how many days it actually covered, things like that.  And it struck me suddenly---life with Janey is a lot like life in Groundhog Day.

Day to day, things don't change a lot with Janey.  There are tough periods and easier periods, but they swing back and forth.  There are little bits of progress, but they are often pared with little bits of regression.  She gradually switches interest from one set of videos or playlist of songs to another, but often switches back after a year or two.  In general, life with Janey over the years stays in most big ways the same.

My first reaction, thinking of that today, was that it brings up one of the topics I haven't addressed much here, because I feel a little ashamed of it.  It's boredom.  Sometimes, raising Janey can be boring.  As a parent, we are used to the rush of changes in our children.  They go by almost too fast sometimes---learning to read, making friends on their own, going out places by themselves, starting high school, graduating, going to college...I've been through it, and it is quite a whirl.  It's not boring, you can say that for sure.  But sometimes, I wish that there was more of that with Janey.  It's not HER that bores me, it's the routines.  I think about her coming home from school.  We do the same thing, every day.  She goes to find food, I help her with it, she wants to snuggle, I lie down with her, she gets up and watches some TV, we start waiting for Daddy, he comes home, he cooks for her...We don't talk about her day.  We don't discuss new things she learned.  I try, sometimes, to sneak in something new---yesterday I suggested a walk.  She went from happy to meltdown quickly.  Sometimes, I try hard to read her a book or play toys with her.  She either pushes them aside, ignores me completely or freaks out.  I realize she's tired from her day at school,and that there is comfort in routines.  But forgive me for saying so---sometimes it gets boring.

However, that's not the message of "Groundhog Day", I don't think.  The message is that with a day that is the same every time, we have time to perfect it.  We are able to look at each variable and make it better.  And with Janey, we can do that.  I can say that life now is easier than it was two or three years ago.  It's partly Janey, but it's partly us, I think.  Take that afternoon.  I make sure there is always food she can find.  She doesn't want it handed to her.  She wants to look for it.  So I get something ready and put it in the fridge or on the counter.  When she wants to snuggle, I set aside everything else.  I know it's essential that I spend that time next to her---not asking questions, not trying to do workbooks, not pushing play on her, just being with her.  Then, when she wants TV, I've figured out through many, many Groundhog-like Days that she will never stay with her first choice.  She watches it for a second, and then wants to switch.  Now, I put on the first show and stay right there, and say "Tell me if you want to change shows"  That averts a meltdown, as does the snuggling, as does the food available but not handed to her.  I've figured those rules out over time, and by using them, most afternoons are fairly smooth.  I know too that she will break down a little each day before Tony gets home.  She seems to need it, and I just ride it out, not trying to figure it out or calm her down, just letting her have her small time of crying.

Life many parents, I am sure, I think about raising my older kids, my boys, and wish I could go back and savor a lot of the moments.  They were moving targets.  One day, the boys didn't want to leave my side, the next, it seemed, I have to rely on text messages to know where in the world they are.  One minute, they are keeping you up all night as a baby, the next moment, they are keeping you up all night waiting for them to get home.  Nothing lasts.  But I've been given a gift, if I accept it, of a child that grows very, very slowly.  I have many, many days to get it right, and I will keep trying to do so, Groundhog Day after Groundhog Day.