Monday, September 26, 2016

The best weekend ever

The title says it all.  This past weekend with Janey was the best one we've ever had with her.

Janey, all weekend long, was happy.  Not manic happy, but very, very happy in a contented, sweet way.  There was not a single moment of tears or screaming.  She was smiling pretty much all the time.  It was amazing, truly amazing.  I would have given anything to be able to see this weekend during some of our darkest times.

We were able to do things that we are never able to do.  We took Janey to a new food place, Wahlburgers, and got takeout, which took a little while, and then ate it outside in the city.  I felt like I was living someone else's life.  We went to Savers, and Tony was prepared to take Janey out, for a ride or walk or whatever to keep her happy.  Instead, she was happy AT the Savers.  For 90 minutes.  Happy looking around, laughing, talking....amazing.  We sat back on Sunday night and watched two hours of old Family Feud episodes.  Janey watched with us, or played with her iPad, all in perfect contentment.  She slept well, she ate well....she was beyond a delight.

And of course, I want to figure it out.  What was different?  How can I capture what happened and repeat it?

I have a few theories.  I think she's very, very happy at school this year, and that translates to happy at home.  I wonder if she has pain of some sort a lot of the time, and it was gone for the weekend.  It was the first cool weekend of fall, and perhaps she loves fall and hates the heat, like me.  Tony and I had little else going on, and gave her a lot of attention.  We were both happy, after a long week, and she picks up on emotions tremendously.  Who knows?  I almost hate to write about the weekend, for fear of the jinx, but I had to.

There were lots of times when I thought it would never be like this.  There were weeks and months and even years where it was so hard I honestly sometimes felt I couldn't go on.  And however hard it was for me, I know it was so much harder for Janey.  No-one should ever be unhappy as much as she was.  I have so much joy when I see her happy.  It makes me realize that is all that matters with her.  The autism makes no difference.  The intellectual disability makes no difference.  It's her happiness that makes the difference.

I will try not to over-analyze.  I just wanted to record this weekend before it slipped into the vast territory of past time.  I wanted to have a record of how it can be.  And I wanted to thank Janey, and tell her I hope with all my heart that happiness like she has had lately can be the default state for the rest of her life.

Friday, September 23, 2016

Advanced "Welcome to Holland"

I had a rough day yesterday while Janey was at school.  It had nothing to do with her---it involved worry and doctors that don't call back and midlife frustrations and general malaise and so on and so on.  She came home and lifted my spirits immensely.  She had such delight in the everyday afternoon and evening activities---having some cheese as a snack, walking to the ice cream store, hearing music on the way back and dancing, seeing Daddy come home, getting some Chinese food for dinner---it was great.  She even made us laugh with a new phrase.  She asked Tony for a ride and he said "Sure!" and she said "Are you joking me?"  She was a delight.

And for a brief moment last night, as I thought about it all, I was thinking how although she is very different than most 12 year old girls, there are many parts of who she is that are lovely in their differences.  She loves us wholeheartedly.  When Tony got her off the bus instead of me on Wednesday, upon seeing me when I got home she gave me a huge hug, just thrilled to see me again.  She has fun with very small pleasures---a song she likes, a trip to the ice cream store or McDonalds, a video that she's seen over and over.  She doesn't long for what she doesn't have---she isn't asking for Ugg boots or a North Face jacket or whatever else is in right now (and those might be totally out---I don't know, and that's part of it!)  For a minute, I was thinking "it's a different life, but it's a good life!"

Then it hit me---wasn't that awfully like what "Welcome to Holland" says?  Welcome to Holland--a well meant story written by a kind and caring mother about her specific circumstances that has turned into something tossed to every special needs parents as a way of saying "Quit all your griping!"  Of course I am being a little sarcastic there, but that's often what it feels like, like a way those who have never lived the life can say "What's the problem?  It's not the same as most lives, but it's just as wonderful in its own way!"

And I felt angry, really angry.  I felt angry for many reasons.  The big one was that having an afternoon like yesterday with Janey wasn't something that just happened.  It has taken many years to get to where we sometimes are today.  It has taken the dedication of many people---Tony and me, yes, but also many other people---all the people in the Boston Public Schools who have worked with Janey over many years (and they are an amazing bunch of people), the doctors and psychiatrists who have helped us find what seems like the right combination of medications, Janey's brothers, the people in the Hyde Park community like our neighbors and store workers who are happy and excited to see Janey no matter how she acts, my friends, both those I know in person and those I have met virtually, who give me ideas and support and love, the wider autism community who has shared their experiences and advice----it's taken a huge amount of people and work and knowledge to get Janey to where she can have an afternoon like she did.  It didn't happen just by somehow arriving in the wrong country and accepting that I was in Holland and not Italy.

We like feel good stories.  We like happy endings.  What we don't always like is hearing that it takes work, it takes money, it takes resources, it takes tears and false starts and dead ends and heartbreak and sweat and dedication and so much more to get to those happy endings.  And they aren't endings, really.  I've read about something called the "end-of-history illusion".  We as humans often feel like the stage we are at right now is the evolved, end stage.  We see work and change and developments in the past, but we sort of assume the future will be steady, that we have done the work and now we just sit back and reap the benefits, and that is of course not true.  The future will hold as much work and as many changes as the past, most likely.

Our society is set up for people to travel to Italy, not Holland.  A trip to the special needs world is not just a different trip, it's one where none of the guide books help you, one where you have no hotel reservations, one where before and after the wonderful moments you might have, there are many times of confusion, frustration, fear and despair.  There are kind people in Holland, amazing people who do more than you would ever expect to help you, there are beautiful sights, but don't let anyone tell you that it's just another form of Italy.  It's not.

Wednesday, September 21, 2016

What Janey said about screaming

It's been a long week here, and it's only Wednesday.  Tuesday Janey had a scoliosis checkup at Mass General hospital, and today I had the special big event that comes with turning 50, a colonoscopy.  Monday I'd had a ultrasound to try to figure out why the Framingham Heart Study, which I am a part of, saw potential scarring in my liver as one of the routine research tests they do.  To top off the week, I have a mammogram this Saturday.  So not my favorite kind of week, and not Janey's, either.

The colonoscopy was fine, harder to prepare for than to have, and it didn't show any problems.  I don't know all about the liver tests yet, but what they saw was consistent with autoimmune liver disease, which I had some blood test positive for also.  I'm not letting myself get too worried, because I don't know enough yet to worry and I can't do much about it until I know more.  But this adds another potential autoimmune issue to a family pedigree full of them, and adds another bit to my feeling that Janey's autism is in some way autoimmune-driven.

The good news is Janey is almost done being screened for scoliosis.  They got a very good x-ray of her, which she stood still for in a booth-like place where she had to hold her hands up high.  She would not do that at all six months ago when we last went, so we were very proud of her, and it showed her curvature at a level low enough not to need a brace or surgery.  However, evidently the X-ray took up all her patience.  She was very ready to go after that, but we had to wait and see the doctor.  Janey let us know that she wasn't happy by means of her signature scream, loud and hysterical and I am sure heard by everyone in the hospital section.

When things calmed down and I was dressing Janey, and it was evident we were actually leaving, she said to me "I don't think there is any need for quite that much screaming!"  Well, that's a direct quote, but not one I had said that day at all.  I can't remember when I said it, but I think it was quite a while ago, when I had reached the end of my rope at some point.  It was one of Janey's longest utterances in a while.

What Janey said reminded me once again that nothing I say to her is unheard.  She listens very well.  She might not show any sign of it, or give any response to it, but she hears it and remembers it.  I need to always keep that in mind when I speak to her.

Last night, reflecting on all of it, as I was snuggling her to sleep, I said "Janey, I know you have a reason when you scream.  I might not know the reason, if you don't tell me, but there is one, I know.  You might hurt, or be scared, or be frustrated because you can't find the words to tell me what's wrong, but I know you are communicating when you scream.  I want us to find a way to tell each other what is wrong"  Janey didn't answer, but she gave me one of those looks that speaks volumes, a surprised and pleased intense look, a look that tells me as much as words could.

And so we go on.  We take it day by day.  When we have a tough day, we look to the next day.  When we have a good day, we don't take it for granted.  And by "we" I don't of course just mean our own family, but the larger "we", all of us with children that can't fully communicate, all of us with children that need us so very much.  It makes every fear, every concern, every health scare, so much more intense.  The stakes always feel high.  But we aren't able to have the luxury of thinking too far ahead.  We are needed too much in the present day.  And that's not a bad thing, to be needed that much.  Janey, sometimes maybe there IS a need for that much screaming, even if I say there isn't, but we will try to keep the screaming at a minimum and the hope at a maximum.

Monday, September 12, 2016

Two Non-Fluent Speakers

I read a lot of books about people going to live in cultures new to them.  It's an armchair travel thing---I doubt I'll ever really live that life, but for some reason, it fascinates me.  Often, the people in the books end up having conversations where both speakers are not fluent in each other's language.  They get by on the words they know from the other language, with a lot of guessing and a lot of misunderstandings.  It struck me today that that is what Janey and I do.  She's not fluent in English, and I'm not fluent in Janey-Language.

The double non-fluency can make communications very tough.  A good example happened this weekend.  Janey was crying, and said to me "Does your eye hurt?"  She often does that, reverses the pronouns and says what she wants me to say.  I asked her to use my hand to touch where it hurt.  That for some reason seems to work much better than having her point.  She took my hand and put it next to her right eye, and then tried to get me to poke at her eye.  I said "I can't poke you there, but let me look at the eye"  I didn't see anything, but it was obviously bothering her.  She then said "My eye is bloody!"  The eye wasn't bloody, but I was proud of how she worked hard to use her non-fluent English to tell me how upset she was over the eye.  I think it was a dry allergy type eye issue.  We took a shower and she felt much better.  But I wished so much we were able to better communicate, that she could have told me exactly how it hurt, that I could have reassured her that it looked fine and that it wasn't anything serious.

Janey woke up this morning crying hard.  The crying is communicating, of course, but I can't understand the specifics of it.  I had no idea what was upsetting her.  We went through the regular morning routines, with the tears still flowing.  They lasted until she went out with Tony to wait for her school bus.  Then she instantly cheered up and was hugely happy getting on the bus.  Although I started the day saying to her "It's a school day!" as I always do when that is the case, I think she somehow wasn't sure it was really a day to go to school.  I think she was upset it was going to be another dull old day at home with Mama and Daddy.  That's my best guess, anyway.  I wish so much, more than I can possibly say, that she could tell me why she's sad when she is.  And I wish I could communicate back to her, that if my guess was right, I could have reassured her that it was indeed a school day.

If there was a way for Janey to be fluent in English or me to be fluent in another other means of communication that would work for her, I would do it.  It wouldn't have to be spoken, of course.  If she was able to  use sign language, or typing, or an iPad talking program, or anything at all, I would do anything to communicate that way with her.  But we have not found that way.  We both remain non-fluent in each other's language.  The onus is on me.  I truly think Janey thinks I can read inside her mind.  I think she thinks I know what she is thinking.  I can't even start to imagine how frustrating it must be when she is clearly thinking what she needs, and I don't respond.  I think she resorts to her English and to crying and screaming when she thinks I'm not responding.  So often, she'll bring me the remote and I'll say "What do you want to watch?" and she'll answer "That one"  I'm sure she has a specific show in mind, and she just can't understand why I insist on making her say it in spoken English, which is so often a struggle for her.

Until we find a common language we can both be fluent in, I will keep trying to work on better understanding what Janey says to me.  I will keep trying to help her better understand and use spoken English.  I dream of the day we can communicate with ease.


Wednesday, September 7, 2016

The last day of summer

School starts tomorrow, and I must say it's not a moment too soon.  I don't like summer.  I never have, and I don't think I ever will.  These last few weeks of summer with Janey have felt brutal.

I of course feel right away I must modify that.  There have certainly been worse times with Janey, many times, times when she was a lot more unhappy or manic or angry.  But in terms of sheer endlessness, these few weeks have few equals.

I have been taking the advice of a lot of my friends I've met here, and I thank them for it.  I've been trying to be easier on myself in terms of what gets us through the day.  TV is what gets us through a lot of days, and I realized lately I have a tremendous amount of guilt about that.  TV equals bad parenting, in my mind.  But in some ways, that is a selfish view, because for Janey, TV equals happiness, often.  She adores her shows.  Her default position in the house is in front of the TV, standing up and dancing and jumping.  She has strong opinions about shows, and even episodes of shows.  It's not random watching.  She'll get an idea she wants to see some certain episode, and she uses every bit of her available communication tools to let me know which one---a combination of phrases, pointing, and sometimes screaming.  I am pretty sure she knows all the dialogue of her favorite episodes of shows by heart.  She knows when the scary parts are coming up---she'll start screaming in advance (and by scary parts I mean often very, very mild scary, about as scary as Kipper or Angelina the Ballerina or the like gets).  She interacts with the shows, more than with people.  So---I am trying to relax and accept that.  But I'll admit it.  I feel like a bad mother when the day is mostly TV, often.

I think what most frustrates me is how hard it is to go anyplace outside the house with Janey.  It's partly that I get cabin fever, although I have a large tolerance for going no-place, but I do have my limits.  I want to get out of the house, but with Janey, it's so hard.  It's a tough thing to admit to myself that it just really isn't safe for me to take her most places on my own.  It might be fine for 95% of the time, but the 5%, when she gets upset and starts to freak out, and screams and bites her arms and sometimes, once in a while, lashes out at me or at possibly even someone else---that is not a good scene.  Taking Janey places is a two or more person job.  If there is backup, it can be great.  I'm thinking about our trip to Ohio, or the wedding, or visiting Maryellen.  If there's two people around or more, we've had some very successful outings.  But these weeks, it's been just me, and that's tough.  Again, I'll admit that makes me feel guilty.  I have an overactive inner voice, one that says "You are just lazy.  You aren't trying hard enough.  You just want to stay home and sit around"  I think it's time I told that inner voice to shut up and look at the facts.

We do one trip every day---the short walk to the "ice cream store", the convenience store near us.  I've been remembering the wise words of many of you, and realizing that to Janey, this is a special thing, a routine she loves, even if it might not seem like one to me.  She loves all the steps---getting shoes on, me talking about what I need to do before the walk, the short walk to the store, during which she only needs to hold my hand a little, the time in the store, making the choice from the rows of chips or the freezers of ice cream, going to the counter, getting attention from the cashiers (they seem to be an extended family from Bangladesh, and they are very sweet to Janey) my prompting her to say "thank you" or "goodbye", the walk home, the time in the back yard eating her treat---when I think about it, it's a lot of social skills and self-help skills tied up in a short time.

So, when I think about it, these weeks have probably been harder on me than Janey.  I think Janey is okay.  It's me that is stir crazy and sick of kids' TV and wanting to be able to go into another room without fearing toileting accidents or food thrown all over.  That is why I think of the first day of school as Mother's Christmas---forgive me the sacrilege.  I talked to Janey's teacher for the year yesterday.  It's her first man teacher, and the same teacher she had over the summer, the husband of the ABA supervisor who has been one of the most wonderful people I've worked with in the schools over the years, and he seems like a wonderful teacher.  I am looking forward to Janey's 6th grade.  I think she is too, as much as she looks forward to things.  So I say goodbye to the summer of '16.  I won't say good riddance, but I will say I'm ready for that goodbye.

Thursday, September 1, 2016

Treading Water

This week, and last week and I project this next week, feel like treading water, like running in place.  Janey and I are getting by, but not going forward, not doing much of anything useful or even that fun.  I feel like I'm somehow just not figuring something out, like I'm wasting time that shouldn't be wasted, but I'm not able to do what it takes to change things.

School starts a week from today.  I must say every year the first day of school feels like a holiday right up there with the big ones. I always liked the first day of school, no matter how I felt about the rest of the year.  It felt like the start of it all, the beginning of something new and big.  I remember how it felt to have my new 5 subject notebooks, each section carefully labeled, to have a clean desk and locker, to see who was in my classes and what new faces there were.  Within a few weeks, always, my desk or locker was a horrible mess, no matter how hard I tried, and the notebook was doodled on and torn up.  But the first day---it felt wide open.

Janey and Goofy, at ToysRUs
Janey will be starting 6th grade.  In a lot of ways, every school year feels the same with Janey.  But 6th grade---that's a big one.  That's middle school.  I have a memory so vivid it's like a movie clip of the first moment of 6th grade.  We moved to what in our town was called The Annex.  It was a school built in 1900, and by the time I went there, in 1976, it had been condemned for at least 10 years.  No-one could go on the 3rd floor at all, and only teachers could use the 2nd floor.  We were on the first floor, 3 classrooms.  There were 3 other classrooms you had to go down a hill outside to get to, a shop and a home ec room and a room called "the community room" which was a standalone classroom.  It was a small town, obviously.  But that moment I walked into The Annex for the first time felt like a huge deal.  Mr. Berry was there, one of the six teachers, and he was pointing and saying "That room for 6th grade, that room for 7th, that for 8th!" and it felt like the start of something getting close to adulthood.

I write about that moment partly to contrast it with Janey's life.  6th grade will be a lot like any other grade for her.  The years don't change much, in terms of what she is working on learning.  She'll go to school until she's 22, and then, probably I would guess to some day program.

Janey at the park, before loose dogs scared her away
I feel more and more like it's up to me to make Janey's life interesting and meaningful, and I feel like I'm not doing a good job.   And as much as I tend to take all blame on myself, I know in this case my job is very, very tough.  If Janey were a typical 12 year old, there would be literally thousands of programs, lessons, camps, enrichments---all open to her and all within the Boston area.  In addition, she would have friends.  She would perhaps be riding the subway to school on her own, if she were going to a school like Freddy did.  I would be part of her life, but it would not all be up to me.  When I think about it much, I can get furious.  Giving Janey a meaningful life is as important as it is to any child, but where in heck does all the money donated to autism organizations go?  Why is there basically NO programs Janey can access?  There are a few programs for autism here and there, but when I look into them, they are for the highest end of the spectrum---not for a child like Janey.

Janey finding the Elmo crayon toy, one she loves so much we've bought it twice
So---I do what I can.  It's not enough.  This week, we did a lot of walks to the corner store.  We went to a big open park, Millennium Park, early in the day so there weren't too many free roaming dogs or little kids.  We left when more dogs arrived.  We went to ToysRUs, and Janey enjoyed looking at toys (it's one of the few stores where touching the merchandise is not a problem) but then she got upset and started toward a little girl with a look I know as "about to lunge" and I grabbed her and left.  We watched TV and took showers.  It was not a week that was interesting and meaningful.

I will stop for now, as I feel like I'm entering the ranting and rambling stage of writing.  I'll stop and try to think of something to do today, try to figure out something that is safe for Janey and those around her, something interesting and meaningful.  Good luck to me.

Friday, August 26, 2016

The Weeks Inbetween

Janey starts school in a week and a half, on the Thursday after Labor Day.  Boston starts later than almost any school I know, but then of course they also stay in school much later, into late June.  Of all the weeks in the year, I'd say these weeks in between summer school and regular school are the longest feeling.  Especially this year---we had the early summer excitement of our trip to Ohio, and the later summer excitement of the big wedding, and now...nothing.  It's very, very hard to keep Janey happy during weeks like these.  Tony is at work, William is back at college and although Freddy is helping a good deal, he also is spending a lot of time with friends before he and they also go back to college.  So it's mostly Janey and me.

How do I fill the days?  I'll be honest, they have mostly been filled with TV and videos.  I don't know what I'd do without them.  It's not that I don't want to do other things.  But taking Janey anywhere on my own is so tough.  Yesterday, we did a trip to the grocery store, and that wasn't even just me---Freddy went too.  Lucky that he did, because Janey decided to fling a jar of salsa she wanted into the cart.  It might have been okay, but it hit a jar of spaghetti sauce and WHAM.  The cart and floor and all the food we'd already gotten was covered with salsa and sauce and glass.  And Janey was very excited by it all.  Freddy stayed with the cart as we waited for cleanup, and I took off with Janey to another section of the store.  We had planned to buy a lot more, but we grabbed a few things, salvaged what we could that was covered with sauce, paid for the lot and the broken stuff, and took off while the getting was good.

Early in the week, another big exciting trip, to the Rite-Aid drug store.  Janey was enjoying herself and being good until something upset her, who knows what, and she started to scream the ear-piercing scream.  It took all the calm I had to get her in shape to quickly buy my stuff and again, get out of there.

We've done some walks.  That's tricky too, as Janey will suddenly decide she's had enough, and that means she doesn't want to walk back.  I live in fear she'll get upset enough to jolt away from me and get hurt.  So we have to keep the walks extremely short, within sight of the house.

At home, I mostly serve as a show changer.  Some of Janey's shows are on Netflix, some on Hulu and some on Amazon.  Switching between them is a bit more than she can do.  She always knows exactly what she wants to watch, but the hard part is telling me.  We scroll through lists of episodes, and use a modified kind of sign language, where she points to the right or left to tell me which way to scroll, and then to herself when she finds the show she wants.  Then, because she often watches parts of shows, we have to figure out if she wants the show back at the beginning or where she left off.  It's about 50-50, but it's also 50-50 whether she'll say what she really wants.  "From the beginning" can mean "where I left off" and if I get it wrong, it's an automatic scream.

I don't mean to sound like a complainer here, although of course that's partly what I'm doing.  But what bothers me more than anything is that I feel like Janey deserves more.  I think it's a boring life for her at times like this.  I wish she was doing the kind of things I did when I was 12 at the end of the summer---spending nights at friend's houses, going for walks in the woods, reading and reading, playing cards with my sister, even working babysitting and in my mother's store.  By the time I was 12, my world was fairly open, as open as a pre-driver's world can be in the country.  Janey's world is very closed.  She has school and home.  I do feel good we went a few places this summer, but I still feel very sad at times that her world is so closed in.

I'll close with a picture of Janey doing her favorite thing during times like this, picking out a treat at the "ice cream store".  That's the highlight of her day, I think.  It's not enough, but it's something, and it makes her happy, and sometimes that is all we can do.