Wednesday, May 4, 2016

"A Good Mother Would Never...."

Like many mothers, I have an idealized image of a good mother in my head.  In my particular case, it's the autism brand of good mother.  The autism good mother is endlessly patient.  She completely accepts her child's autism, while at the same time doing everything in her power to help her child live in the world.  She constantly seeks out therapies which would help her child, yet at the same time makes sure her child realizes they are perfect just the way they are.  She is careful with diet, with tone of voice, with IEPs, with toys, with TV watching...with everything.  And the one thing she never, ever does, of course, is yell at her child.
We all know the good mother is a myth, but I think many of us still strive to be that myth.  Part of it is what we read.  Those writing about parenthood, without maybe doing so consciously, paint themselves in the best light possible.  We might jokingly admit to small transgressions "I put on a video just hoping she would leave me alone for a while!  I gave her soda for breakfast!  I dressed her in yesterday's clothes again!"  But we don't talk about the moments that are not funny, not silly.

The other night, I yelled at Janey.  I really, really yelled at her, loudly and angrily.  I feel awful about it.  I'm not a yeller.  I don't lose my temper often.  I can only think of a few times in my life I truly lost my temper.  That's not a result of some wonderful self-control---it's just not in my nature to get very angry very often.  I get depressed instead, or silent, or secretly seethe internally.  But this time, I really yelled.

The setup was this:  Janey had come back from a ride with Tony.  I took her to the bathroom, as we do after a ride.  She didn't use the toilet.  I asked her a couple times if she was sure she didn't need to go, and she repeated "sure she didn't need to go!"  Then she wanted to cuddle on the bed.  As soon as we got on the bed, she looked at me, smiled, and proceeded to wet the bed all over.

For more background, this was the 5th or 6th time in a row that exact scenario had played out.  I'd take her to the bathroom, she wouldn't go, and then she'd go straight to the bed and wet it.  I had spent the last many days washing blanket and sheets.  She won't leave waterproof covers on---in her eyes, under the covers usually means straight on the mattress.  We got a new mattress, badly needed, a few months ago.  We can't buy a new mattress every month.  

So, without stopping to think, without taking into consideration all the things I want to have taken into consideration with Janey---that she might not understand what I have said, that there might be sensory reason for her actions, that she truly might not realize she had to go until she's on the bed, that she prefers to use the bathroom totally on her own and not be taken by me, that the reason for her actions might be something I don't understand at all but that in her head is totally reasonable---I yelled.   I said "You stop that!  You go in the bathroom right now and use the toilet!  YOU CAN'T KEEP PEEING ON THE BED!!!!"

Janey's response?  She laughed.  After a while, she did get the message that I wanted her to go into the bathroom, and she went.  I lay there, angry and wet and just plain tired of it all.  It took a few minutes for the guilt and sadness to set in.  I don't want to be like that.  I don't want to yell at Janey, or have anyone yell at her.  

A part of me does understand that even a saint would sometimes lose their patience with Janey (or with almost any kids, at some point).  I do know that it's likely that every parent on earth has yelled at their kids once or twice.  But still---I wish I hadn't yelled at her.

When I calmed down, I told Janey I was sorry.  I told her that again the next day, and the next.  I washed the blankets and sheet again.  I put down the pads again, and hoped she wouldn't move them.  I told myself that her progress with toilet training has been great lately.  She has worn underwear to school for months, with barely an accident.  She almost never misses with "messy" toilet needs.  She uses the toilet for urine at home much of the time, and she prefers underwear to pullups now, and we even take her in the car in underwear.  The bed issue is something we need to work out (for daytime---I don't imagine she'll be out of pullups at night for a long time, if ever), but overall, she's doing well.  
In some ways, there is good in the Good Mother ideal.  It's something to aim for.  But none of us are going to always be that Good Mother.  However, most of us are smaller case good mothers, indeed.  We love our kids.  We try every day to do the best we can for them.  We aren't perfect.  But especially for those of us with children with special needs, we need to take the Good Mothers we read about with a grain of salt, and to keep just being the good mothers we are, and supporting each other in that sometimes incredibly challenging task.

Monday, May 2, 2016

Later and Longer, but the stages do pass

Sometimes, it takes the observation of a stranger to realize things.  A month or so ago, I was with Janey at our favorite store, the Savers thrift shop.  She was looking with me at toys when I noticed another little girl, about Janey's age, who I strongly guessed was also a member of Autism Nation.  She ran over to where we were and grabbed a stuffed animal.  Her mother was right behind her and apologized, and I said it was fine, and then said "I think our girls are kind of similar"  She looked at Janey and smiled, realizing what I had realized, and then said "But my daughter is wild!"

I realized at that moment that Janey is no longer wild much.  She doesn't run away from me.  We can go for a walk and not hold hands, and she pretty much stays with me.  Sometimes she goes a bit ahead, because I am a slow walker, but I can call her to come back or to wait for me, and she does.  I don't worry about losing her if I take her to a store (which I don't do much, as she still doesn't like them at all) or an outdoor place.  She of course still is in motion most all the time, but it's mostly hand flapping and jumping, not running away.

It's always a bit of a surprise to me to realize that a behavior that Janey used to have is gone.  I think that's because stages with Janey show up much later in life than with most kids, and last much longer.  That can make them seem like they are just part of her, but they aren't, always.

Another example was Janey's mischief stage.  That was a tough one.  She'd do things like empty bottles or jars or glasses of water onto the floor, or whole bottles of shampoo into the tub.  Even when watching her every second, she'd manage to slip a little ahead of us and do something messy and destructive.  That stage lasted about a year, and it was a long year.  I think now it was a stage that is a typical toddler stage, exploring the world.  The difference was that Janey was taller and more mobile than a toddler, and less able to understand limits, so it was not as easy (or as cute) as it would be with a toddler.  Now, unless Janey is truly trying to make something she's seen us make, she doesn't do the mischief stuff much.  She might decide to make Kool-Aid using half a jar of powder and a drop or two of water, in the process making a huge mess, but that is a by-product of trying to help herself, not just a mess for fun.

The toughest stage of all is one I will euphemistically refer to as the "diaper incident" stage.  If you have a child with autism, you probably know what I mean.  It's horrible, horrible, horrible.  It results in malodorous messes that take hours and hours to clean, and a feeling of total despair.  That stage lasted a couple years---not with incidents every day, but more than enough.  One is more than enough.  Now, while knocking on wood and pleading for no jinxes, I will say that Janey is pretty much 100% trained in that part of toileting.  Thank goodness.  The other type of toilet training is maybe 70% right now (although close to 100% at school) and I will write about that soon, but the incident part?  Hopefully gone for good.

The bottom line is that the stages Janey has gone through, and a lot of kids with autism go through, are not completely unheard of stages for typical kids.  But they start far, far later in life, when there is more potential for mayhem and less tolerance by the general public, and they last much longer.  At least some of them, though, do pass.  They pass quietly.  There isn't a sudden moment when they end.  It's more a gradual realization that, wow, she hasn't run away from me for a long time now.  She doesn't empty shampoo any more.  She hasn't done the horrifying "painting" in years.  Wow.

Some parts of autism are, at least for Janey, probably going to be forever.  But other parts aren't, and I am proud of the progress my sweet girl has made, just as much as a mother of a two year old is proud when some stages end.  I'd say I'm even prouder of the end of those later and longer stages.  And more relieved.

Wednesday, April 27, 2016

Thoughts on vacation and school

Janey's April vacation was a good one.  We didn't have a lot planned, and most of the days were just Janey and me hanging out, watching TV or reading or playing outside.  We had two nice visits with my friend Maryellen, who Janey adores, and one outing for shopping (clothes, which Janey tolerated for FIFTEEN MINUTES!) and ice cream, but mostly we just did not much. 

Janey doing one of her favorite things!
By the end of the vacation week, I noticed something I often notice after times when Janey and I are at home a lot together.  Her talking increased a good deal.  She had been in a low ebb for talking, but by weeks end, I was hearing longer phrases and new words.  At one point, outside, I said "Look at my flowers, Janey!" and she said "The daffodils!", a word I had no idea she knew.  She was stringing together thoughts, like "want to go on the bed and snuggle under covers?" It just felt like we were communicating better than we had in a long while.

Janey's outbursts were short during vacation, and pretty easily dealt with.  I read a book about adopted children with attachment disorders.  That isn't what Janey has, as she isn't adopted and I don't think she has an attachment problems, but the strategies for dealing with that problem interested me, and weren't too different than I do anyway.  Mostly, it involves keeping calm when the child is not calm, and not ever using things like time out---instead, giving more attention when behavior is tough.  I've been trying that, not as something I'm going to always do, but trying it, and it is working well.  When Janey screams and bites herself, I say "I think you need a snuggle time with Mama" and often, very quickly, Janey is happy and smiling.  With her outbursts, it's a matter of whatever works, and it was nice to have that working for now.

I was interested to see how Janey did with school starting again.  I very much like Janey's teachers and therapists and everyone I've met in the autism program at her school.  But sometimes, I'm starting to wonder if just the whole structure of school is tough on Janey.  School is not really designed for someone like her.  I don't think she enjoys ABA, or any kinds of art type activities, or almost any structured learning.  She likes music, and being outdoors, and taking walks.  They do those things at school as much as they can, but she is not the only kid in her class, and they are charged with teaching her, not just keeping her happy.  

This morning, Janey was not at all eager to go to school.  That is new for her.  She almost always like going places, almost any place, and she's always been eager to get on the bus.  Today, she asked for a car ride right as she got up, and was very upset we told her it was a school day.  She seemed to resign herself after a bit, but as I watched her head to the bus, she looked grim, stressed.

Sometimes, that mean voice in my head which is my own judgemental side says "if you were a GOOD mother, you'd homeschool her!"  Well, that is not going to happen.  Janey needs school, and I need the respite that school provides.  Even with a good vacation, I was extremely ready for Monday to come and school to start again, and I feel quite sure Janey would be very sick of being home with me after not too long at all.  But I wonder what education for Janey would look like in an ideal world.  I am so lucky in that I honestly have never had a teacher for Janey I didn't love, and who I didn't feel loved Janey.  That's not the issue.  It's the whole structure of school.  School is set up for learning, not for life skills or for learning to do things that will provide lifetime happiness.  The goal at Janey's school, which has two parts, really, a "regular" part and an autism part, is stated as "We believe every student will attend college"  I do think they realize this is not a realistic goal for Janey, but my point is that the "normal" school model seems to be more modified than replaced when designing programs for kids like Janey, and that just doesn't always make sense.  This is a systemic problem, not a problem with Janey's specific school.

I'm doing a very lot of thinking lately about school and Janey, and about how I can be prepare her for the future.  I want to honor who she really is in this preparation, not a mold that doesn't fit her.  I hope I can figure out a way to do that which will work for her and for us.

Sunday, April 24, 2016

Legoland Discovery Center Boston!

This past week has been vacation week here, and I must say something I never thought I'd say about a vacation week with Janey---it has been relaxing and fun!  For the most part, anyway.  She's been in a banner mood, cheerful and talkative and cooperative and just pretty much a joy.  It's been really something.

Janey looking at Boston in Lego form
And today we had a special treat to top off the week...Legoland Discovery Center Boston!  I was offered tickets to an autism-friendly special time at Legoland by one of the organizers, who had read this blog.  I've heard of bloggers getting offered things like that, but this was the first time it happened to me, and I was quite excited!  However, I really was unsure how it would go.  Janey has never shown a real interest in Legos, and I didn't know much at all about the place.  But I love the idea of autism-friendly times at museums and other venues, and I wanted to give it a try.

Well, it was a huge success!  The event was from 8:30am to 10am, before the regular opening time of Legoland.  I felt worried Janey would want to leave after a few minutes, and I wouldn't be able to write much about what we did there.  However, we wound up staying until around 10:15! (you could stay as long as you wanted, even once the regular opening time started)

Gillette Stadium, Lego style
The other surprise was how much Tony and I enjoyed ourselves.  The coolest part, to us, was the Boston made all out of Legos.  All the big tourist places were included---Fenway Park, Cheers, the Hancock Tower, Old Ironsides, and there were also things like a T bus and commuter rail, Logan Airport and City Hall.  It's really something what you can create with Legos.  Janey seemed to enjoy looking at the Lego buildings too.

Her favorite part, I think, was the two rides.  There was a ride sort of like the Dumbo ride at Disneyworld (from what I remember the one time I was there as a kid), where you go round and round and can also go higher or lower.  With this ride, you did that by pedaling bike-like.  There was also a train type ride where you could shoot spiders and bad guys with laser guns.  Janey didn't try the shooting part, but Tony and I did, and the ride kept score (Tony beat me!)

Fun on a ride
There were areas where you could build with Legos, which Janey wasn't too into, but there was enough else to do so that was fine.  There was also a 4-D movie, with 3-D glasses and special effects like snow.  I loved that, as I've never been to a modern 3-D movie, but Janey didn't last there.  That's what I love about autism events---nobody gets upset if you need to leave.  Tony took her out of the movie area and I stayed for the about 10 minute show.

Tony's cool creation---Janey is unimpressed
Janey enjoying the experience
I talked to one of the organizers of the event, and she said this was the 2nd time they've had an autism event.  She asked us how we heard about it, and told me that they don't like to advertise a lot, because they want to keep attendance low, so only kids with autism and their families are there, but they also want to get the word out to those who are their intended audience.  I can see how that would be hard.  They did send home a flyer from Janey's school, so I think they are doing a good job with outreach.

At the playground
It's wonderful to be able to take Janey to "regular" places, and to not have to worry about meltdowns in lines, overwhelming crowds and stares from her behaviors.  I think one of the best parts is that we ALL can enjoy ourselves, as a family.  So much of the time, it seems like either Janey can enjoy herself, or we can, but not both, and for us all to be having fun together---that's wonderful.

After the event, we walked around the area a bit, and went to a cool little riverside playground and then had a fancy piece of cake in a French type bakery.  It was a whole morning out.

I'll write more soon about vacation week and my thoughts on it.  Tomorrow is back to school.  Often, I would have been counting the seconds, but this vacation, there is a small part of me that almost wishes vacation was longer.  Miracles never end.

Tuesday, April 19, 2016

The word we don't say anymore

Even when I started writing this blog, about 8 years ago, it was still marginally acceptable to use what I will now call the "R" word.  Now, the acceptable term is "intellectual disability".  In many ways, that's a better term.  The R word meant behind, and implied that those it referred to would someday catch up.  Intellectual disability doesn't have that implication.

In general, I am not too hung up on semantics.  Part of the reason is that it often takes quite a while for the general public to catch up with those in whatever community it is that creates the word.  It is sometimes easier just to tell people straight out---"Janey is ....."  I have done that, a few times.  Generally, I resort to that when I heard something along the lines of "But all kids with autism are really, really smart!  You just need to unlock it!  Have you tried (insert latest hip treatment here)?"

However, as the years go by, I realize that both the incorrect term and the more correct one are pretty meaningless.  Yes, in many ways, Janey is intellectually disabled.  There is no question there.  Despite many, many years of teaching, she doesn't know her letters, or numbers.  She can't read or write, or really use a writing utensil at all.  She speaks mainly in short, familiar phrases or echolalia.  If her IQ was able to be tested, it would be very low.  But those academic areas are just a small part of who she is.

I don't like to think about it, but the truth is, before I had kids, I thought having a child that was the R word would be the one thing I simply couldn't deal with.  I would guess a lot of people think that.  I felt it would be the ultimate tragedy.  Now, I can say with complete honestly that I was wrong.  In day to day life, Janey's intellectual disability makes little difference in her life.  It matters far less than her happiness, her health, her safety.

I also get now that there are many, many kinds of smart.  I often say to Janey "You're so smart!" and totally mean it.  She is smarter than I am in a lot of ways.  She dances far better than I ever will.  She is good at using the computer and iPad.  She can run a lot further than I ever could.  She has more sophisticated taste buds.  She is less socially anxious.  She is a million times more musical than I am.  She has a wonderful sense of humor.  She has more fashion sense than I do.  I used to think, honestly, when people said there were many kind of intelligence, they were saying that to somehow cover up the fact that whoever they were talking about didn't have "real" intelligence.  I hate it that I used to think that.  It's not true.

So, you might ask, why even admit, why address the fact that Janey does indeed have an intellectual disability?  Well, because it does make a difference in terms of what the future holds for her.  I believe in living in reality.  The kinds of smart Janey has are not the kinds of smart that will make her able to succeed academically.  She will never get a high school diploma.  She will never go to college.  And beyond academics, she will never hold a real job, or live on her own.  And I hear already a chorus, probably mostly from my own mind, saying "You are assuming a lot there!  Don't you have hope?"  And the truth is, at this point, I think reality is more important than hope, at least hope for things that there are a vanishingly small chance will ever happen.

There are kids with autism, including non-verbal or low verbal kids, who don't have an intellectual disability.  That is extremely important to keep in mind.  But I think it's also important to admit there are kids that are indeed intellectually disabled. Sometimes, I feel like at some high level, it might be almost a conspiracy to not admit that, because not admitting it lets us as a society not truly deal with a future that is coming.  Janey will need lifelong care, and so will many, many others like her.  We can hope that isn't the case all we want, but it's reality.  Until we admit that as a society, we will not be planning for it.

In a bigger sense, I wish everyone could realize what it took having Janey for me to realize.  Being intellectually disabled is NOT A TRAGEDY.  It's not something so horrible that we have to pretend it doesn't even exist, have to say that somehow it will magically go away in the future.  It's not the end of the world.  Janey is one heck of a terrific person, despite being the word we don't say any more.
My terrific Janey

Friday, April 15, 2016

A drink and a song

Last night, we decided to live it up a little and get some dinner out---some Burger King.  We ordered just what we felt like, because we are like that, living large, you know.  And then we ate it in the scenic lovely parking lot of the mini mall the Burger King was at.  I told Tony as we ate that I knew when I married him he'd take me some special places, and a night like the one we were having certainly proved I was right.

Seriously, though, we enjoyed ourselves.  I was thinking how in some ways, I'm pretty suited to the lifestyle that life with Janey brings.  I am not much into getting dressed and going out, I wouldn't really call myself unsociable, but I'm probably low-sociable, and I am as happy eating in the car in a parking lot as I would be in a fancy restaurant overlooking the ocean, most of the time.  We had a nice meal, joking around and people-watching.

At one point, Janey asked for a drink of Tony's soda.  He had a big diet Coke (he is a diabetic).  We don't usually like Janey to have soda, but in the spirit of a carefree night, we gave it to her without a lot of thought, and she had a nice big draw of it.

When we got home, it was the time Janey usually goes to sleep, about 7:30, but she wasn't sleeping.  She finally did go down about 8:30, which was fine.  In another example of just how we roll, we all went to sleep at that time, which is I have to admit a fairly typical bedtime for us.  We are just not late night people.

At four in the morning, Tony woke me up to say Janey had been up almost all night and it was my turn to take over, so he could get a little sleep before work.  I was happy to, but not happy to hear about the sleepless night.  We've certainly had them at times, but not too often recently.  There's two types of them.  One is the upset, screaming up all night and the other is the cheerful but demanding up all night, and Janey was in the second mode.  Every time Tony drifted into a minute or two of shut-eye (we stay up when Janey's up, but the human body can only take so much not sleeping and we drift off for minutes here and there), Janey had a new request.  So he was not in a good way.

Janey switched over to requesting things from me.  She watched part of "Journey to Joke-a-lot", a Care Bears movie that I think was designed mostly for late night college parties where there might possibly be some non-sobriety going on, due to its many wild colorful scenes of roller coaster type rides going through bizarre landscapes.  Then she asked for another show on the "big TV", but I told her it was time to lie down, and if she couldn't sleep, she could use her iPad.  That was a mistake, as it turned out her iPad was out of charge.  That is something Janey doesn't get at all.  I think she thinks we just every now and then decide to take away the iPad, to show our dominance or something.  We've tried getting her to use it plugged in, but she immediately unplugs it.  So she was ready for a meltdown.

Grasping at straws, and cursing the caffeine in the diet coke, consumed after 12 noon, which we have to be reminded over and over and over results in her not sleeping, I asked her if she wanted me to sing her a song.  She said immediately "Yes!" which startled me, as she isn't usually a direct answerer and she generally isn't that into my singing.  I asked her what song, and she said "Angels we have heard on high!"  Another direct answer, and I knew what it really meant.  I pretended I didn't, and started to sing the carol, and she said "On the big computer!"

For some reason, Angels We Have Heard must always be played through iTunes on the computer, with the visualizer on.  I knew that from the start, and I dragged myself out of bed and put it on.  And we listened and watched, the unseasonable song and the mesmerizing colors and shapes.  We listened together to five versions of the song.  Janey danced next to me.  Some of the versions required me to clap along, which Janey let me know by clapping my hands for me to get me started.  We skipped version six, done by Neil Diamond, and went to version seven, a VeggieTales version, proving that Janey doesn't always have great taste in music.  We wiled away the very early morning hours, until it was time to get ready for school.

I thought, after I'd had a little rest, that like the parking lot dinner, that sometimes what Janey wants and needs is similar to what I'd want and need.  I love hearing many versions of a song, and getting into the light show the computer provides, and aside from not quite wanting to do it when I'd rather be sleeping, I'd enjoyed myself a lot with Janey, having a drink and a song with a friend.  My life today isn't exactly what I'd ever pictured, but whose life ever is?  Life is what happens while we're busy making other plans, to quote John Lennon.  Having a child like Janey isn't in most people's plans, but it's life, and like any life, it has its downs but it also has its nights of drink and song.

Wednesday, April 13, 2016

Mostly just pictures!

I took a bunch of pictures of Janey tonight, and thought I'd share them in a mostly just pictures post!  We have a routine with taking pictures which she loves.  I pretend to tickle her (she doesn't like to be actually tickled, but she loves me to say "tickle-tickle!" with my hands in tickle position), and then I take a picture, to get a smile!  Not that I only want smiling pictures of her, but I love seeing her smile.
Here's Janey playing with kinetic sand, a wonderful present from a dear friend.  It's the first toy in years Janey has had an interest in, and she loves it.

Smiling in the sunlight

I love to see my Janey happy.

Another big smile!

My shadow taking her picture!  Janey has the blessing or curse to have the family hair, thick and very curly.  Her brothers both have it too, as do assorted members of my family (not me!)  It changed when she was about 7 from being straight and very blond to being ash blond and curly.
Janey pointing!  She doesn't point a lot, except at herself as a way of saying "I want that", so this was a lucky shot.  She was wanting Tony to hurry up and come down to the driveway to take her for a car ride.