Monday, October 20, 2014

Portrait of a great weekend

Janey's moods often seem like the weather.  You can't control them---they come and go as they wish.  This weekend featured sunny, sunny, beautiful weather.  She was a joy.  Tony and I told ourselves this morning to remember how it is when she is like that, to remind us not to lose hope when the storms come.

Here's some moments from this weekend----

Janey woke Saturday with one idea in her head---getting some cupcakes.  Instead of throwing a fit, she just kept charmingly on message, asking for them.  When Tony said something like maybe later they would go to the Stop and Shop and get some, she added that into her request---"want to go to the Stop and Shop?  Want to get cupcakes?"  When Tony was delaying leaving, she went up to him and said "What's going on here?" in a perfect tone for the occasion.  We laughed and laughed, and they set out to get the cupcakes.  Janey only ate the frosting off a couple of them, but that wasn't really the point.

We went for a long "ride in the car", which was another request of Janey's.  She doesn't particularly care where we go during these rides.  She just likes the journey.  We drove around and looked at some  leaves, and then went to the Savers thrift shop.  A few weeks ago, I had gone there with Freddy and Janey, and noticed that suddenly Janey is actually interested in looking at the toys---not just fixating on one or glancing at them, but really looking them over.  I wanted to show Tony the change, and Janey showed him.  She stayed with the toys for a long time, commenting on them "A monkey! A pony!"  She found a huge stuffed snake, which she had to have, and we were glad to get it for her.  On the way home in the car, she sang a clip of a song "When ya going to give me some TIME, Sharona?" and we sang the rest of the song for her.  I felt like crying from happiness at how much fun we were all having.

When we got home, Janey "scared" Freddy with the snake, and then tried scaring the cats with it (mostly by flinging it at them)  Freddy was appropriately scared.  Later, she walked up to him, stood there smiling, and said "I know you!  FREDDY!"  It was an odd and chilling in a good way moment.  A few times lately, I've noticed her looking at people or things like she is really seeing them for the first time.  It was almost like she was saying "I get it now!  You are my brother Freddy!" Of course, she's known who Freddy was always, but it was like it hit her on a new level.  Hard to explain, but amazing to see.

Janey went to sleep at 5 pm last night.  We considered waking her after a bit, worried we were in for an early-awakening night, but she slept until 5 this morning.  She woke up again very happy.  As she sat next to Tony on the couch getting her shoes put on, he said "I'm going to make some coffee you can steal!" and she laughed and laughed and repeated "you can steal coffee!"  She then looked at Tony with the most wonderful smile, and put her head on his shoulder.

I love times like this with Janey.  I wish they would last forever, obviously.  But they don't.  I wish I could feel they would.  I wish I could think "We've turned a corner!  It's going to be easier from here on out!"  Sometimes, I do let myself think that a bit.  But it's a little like thinking the glorious days of fall will never turn into winter.  I don't say this to be negative.  I say it because knowing that perfect fall days won't last forever doesn't make them any less perfect, and because when it's the middle of winter, we can remember that the snap of a crisp fall day will be back.  I want to always remember that.

Friday, October 17, 2014

"But there are so many programs out there!"

So often lately, I hear about a new great program for kids with autism.  Sometimes, I hear about it in the news, or someone tells me about it, or I dig it up with some research.  Often, I get very excited about the idea of the program, until I look at the fine print or try to apply, and then find that Janey isn't eligible.  This is not something that just affects Janey.  Autism covers a HUGE range of behaviors and abilities.  Saying that a program is for children on the autistic spectrum pretty much says nothing.  It's the fine print that figures out WHICH children the program is for.  But the general public would certainly be excused in thinking that any parent of an autistic child could pick and choose from tons of exciting opportunities.  

I want to emphasize I know how lucky I am to be living in the time and place I am.  There ARE opportunities for Janey.  She goes to a school program designed especially for children like her.  She gets speech therapy, occupational therapy, swimming lessons, music therapy and more---all at school.  She has a terrific teacher.  Last summer, she went to a camp that I can never, ever say enough about---Camp Fatima---a dream camp.  I am grateful for all the help Janey gets.  And many of the other programs we aren't eligible for, I might not want for Janey anyway.  But I just wanted to illustrate that just because you hear of a program for children with autism, it doesn't mean that ALL children with autism can participate.  Here's two examples---

The Boston Conservatory has a program that gives lessons in music instruments or voice to children on the autistic spectrum.  The program sounds incredible---read about it here--and I eagerly went to their FAQ page to see if Janey would be able to access it.  Well, this line stopped me cold "Yes, students must already possess basic proficiency (i.e. can play without hand over hand instruction) in their instrument" ,written as an answer to whether the children had to have prior experience.  So, basically, this wonderful program is available only to kids on the autistic spectrum who have already had lessons---kids high functioning enough to have been able to be taught the basics of their chosen music area already.  And they must have been able to do on in regular classes, as the page says this new program is the only of its kind in the country.  It also costs $1000, which isn't so much the issue---not that we have a thousand dollars lying around to spare, but if the program was open to Janey, I would brave hell or high water to find that money somehow.  But---it isn't.

And here's one where Janey was too HIGH functioning.  I heard about a study being conducted here in Boston to help children with autism acquire language, using new techniques (read about it here).  I registered to be considered for the program, and got a call yesterday from a very nice woman who told me all about the program, which sounded wonderful---very intensive and innovative.  I kind of had a suspicion here that Janey would not qualify, though.  The program is for children called "minimally verbal"  I would consider Janey to be minimally verbal, in that she doesn't talk except for simple requests or echolalia, with very rare exceptions, but I do know that that is much more verbal than many kids with autism (and I know how lucky I am that Janey does talk that much)  And indeed, once we were screened, the researcher told me that Janey has too much speech to be included in the study.  I respect that.  It's a scientific study, and she doesn't meet the guidelines.  But I still felt disappointed.  Seven years of speech therapy have not significantly improved Janey's speech, and I would love to have a chance to try something new to help expand her talking.

I could give a lot more examples here, but these two illustrate what I mean pretty well.  I know there are programs which Janey would be right for and other autistic children would not.  But for someone without knowledge of the nuances of autism, it might seem that there are far more opportunities out there than there really are.  That's why it's so crucial that organizations that support autism put their funds into DIRECT SERVICES---not some vague "awareness" campaign or research that might possible help some theoretical child 10 years in the future.  We need help NOW.

Tuesday, October 14, 2014

If I Had Three Wishes...

After this past Columbus Day weekend, which could be renamed around our house "Screamfest '14", I am quite drained.  Janey was happy to get back to school.  She hates long weekends.  I don't know quite how she knows, but she knows that weekends are supposed to be two days, just as she knows when it's quarter to five and Daddy should be home.  Yesterday was one weekend day too many for her, and she let us know in no uncertain terms.  I slept little last night, and today, I've been in a half-dream mode.  It led me to thinking---what would I change about life with Janey if I had three wishes?  And what would I NOT change?

The first thing I'd wish for---No more screaming.  Or, to modify that, only screaming in situations that require screaming.  I wish that for myself, of course, because screaming is very, very hard to hear, and because it limits what we can do as a family.  But I wish it more because of what it means that Janey screams so much.  She is screaming for a reason, whether we can figure it out or not.  I don't want to silence her voice---I want the no more screaming to be because she no longer feels the physical or mental anguish that is causing the screams.  I want to understand what makes her scream, and to be able to help her feel better.

Second wish---no more self-injurious or injurious-to-others behaviors.  Seeing Janey bite herself, hit herself on the head, scratch herself---it breaks my heart.  Again, I want to know the causes of this behaviors, and I want to fix whatever makes her feel she must hurt herself.  I also want her to not hurt anyone else.  I don't want to feel worried when Janey is hysterical that she is going to bite me, or pull my hair, or scratch me---or anyone else.  It's human nature to feel a little nervous about getting into a situation that has led to pain in the past, and I hate it when I'm half scared of being bitten by Janey.  I want her to not need to hurt herself or anyone else.

Third wish---I wish for better sleep, for Janey and for us.  When I've had a good night's sleep, I feel like I can handle this life, and I am sure it's the same for Janey.  When I don't get sleep because Janey is awake, I am overwhelmed and out of hope, out of ideas, out of patience.  If I could count on a good night's sleep every, and if Janey could also have that good night's sleep, well, I can't even quite imagine it at this point, but that's probably because I'm always half asleep.

The flip side here---what would I NOT change?  If I got that magic wand or caught that magical fish that gives wishes, what would I NOT wish for?

First non-wish---I would not wish for Janey to not have an intellectual disability.  That's one I would not have believed, before living this life.  But of all the things that autism has brought to our family, the easiest to deal with is Janey's learning issues.  They really just don't matter much.  I used to, before I had kids, read articles or books about children with various issues, and if they were intellectually normal, I'd think "none of the rest of it would really matter, as long as they weren't SLOW!", like it was the most important thing.  I realize it isn't.  Janey operates as she operates.  We delight in what she shows she knows, but in day to day life, the fact she can't read or do math or write makes almost no difference.

Second non-wish---I wouldn't want to change Janey's personality.  Sure, I'd love it if she was a little less cranky at times, but I can say the same for almost anyone.  I'd like Janey to be happier because that would mean we had figured out what upset her so often, but I don't want her underlying personality to be a different one.  She wouldn't be Janey, then.  She wouldn't be the stubborn, funny, musical, sometimes sneaky, sometimes silly, always surprising girl she is if she had a different personality.  She wouldn't be Janey.

Third non-wish---I wouldn't wish away the autism.  The autism is part of Janey.  It makes her who she is.  I might wish she was a little less affected by it---that she could communicate a bit better, that she could pursue the things she loves a bit more, but the autism itself?  The unique way she sees the world, the lack of any calculated meanness or judgement or jealousy she has, the gifts autism has given her, like her unabashed love of music, the community of other people with autism that she is a part of---how could I ask for that to be gone?  Wanting her to cry less or not hurt herself or sleep with more ease---I would love those to change.  I think that they could change, without changing who Janey is.  But the autism?  No.

I don't have three wishes, but I have my determination to help Janey.  I will try to make my three wishes come true without magic.  And I'll try to celebrate whatever the magic is that gave Janey to us.

Sunday, October 12, 2014

Inexplicable Screaming

Here's a picture of Janey outside.  She is completely happy, having a wonderful time.  We are all playing with a remote control toy in the glorious fall afternoon.

Here is Janey literally seconds later.  She is screaming, as loudly as it's possible to scream, the scream that anyone hearing would be forgiven in thinking is the scream of someone badly hurt.

What happened in between?  Nothing.  Nothing at all.  I challenge even the most devoted believer in behaviorism to figure that scream out.  It had no trigger.  No external trigger, anyway.

What happens?  Does Janey remember something that upsets her?  Does she picture some way things might go very wrong?  Does she just feel like screaming?

This scream, this scream I don't even think you can picture unless you've heard it, keeps us from doing so much.  We had to come inside when she started screaming.  We have no choice.  We have to leave a store if she screams there, leave a restaurant, leave anyplace.  And lest that seem like the reason for her screaming, often, as soon as we leave, she screams again.  There is no pattern we can figure out.

Now, a short time later, Janey is perfectly happy.  She moves on fast.  We don't.  I want to understand the screaming.  I want to help my sweet girl with whatever makes her so very sad, or angry, or scared.  I would do anything to help her, if only I knew what to do.

Thursday, October 9, 2014

Beyond Acceptance

Autism acceptance is one of those catch phrases that takes on a meaning of its own, but if you ignore anything that has been added in meaning to the phrase, of course I am in favor of autism acceptance.  The opposite of acceptance is rejection, and I can't reject autism without in essence rejecting people with autism, because autism doesn't exist outside of the people WITH autism.  So yes, I certainly believe in autism acceptance.

It gets a little more complicated than that, of course.  As it often seems to come back to lately, there's a big gap here between low and high functioning autism.  Janey isn't going to much affected by job discrimination---I very much doubt she'll ever hold a job.  She isn't going to ever most likely be out in public without someone taking care of her.  She hasn't yet learned to use a communication device consistently or talk with much meaning, so despite how much we do listen to what she says, often she can't speak for herself.  I accept all these things about Janey, but I do want to work on making her life easier by changing or adjusting some of them.  How does that work into it?  Am I not being accepting of her when I try to get her to say what is bothering her instead of crying?  Is trying hard to toilet train her not accepting her?  When I insist she keep herself clothed, is that unaccepting?

And what about going beyond acceptance?  What if I sometimes DELIGHT in Janey's autism, not just accept it?  Strangely, it feels almost wrong to think of delighting in something Janey does because of her autism.  And that is odd, because is it okay to ACCEPT her but not to delight in her?

Here's a few examples from last night.  Tony got home from work and Janey was thrilled to see him, as she almost always is.  She was so thrilled she wanted to hang off him for half an hour, hugging him, asking him to pick her up, wanting to hold hands with him and so on.  She was being very sweet, and Tony and I noted to each other that most 10 year olds are beyond being that excited to see their parents, and how sometimes it's a great contrast to how the boys react to us coming home.  Later, Tony needed to drive me to an event at Freddy's school.  We told Janey she was going to go for a ride in the car, and from the look on her face, you would have thought we'd said we were giving her the world's greatest treat.  She didn't ask, as the boys would have, if we were going to get something to eat, if she was going to get to get out of the car, when we would be back, why she had to go---none of that.  She was just excited to be going for a ride with Mama and Daddy.  On the way home, Tony told me she kept saying "Mississippi!" as if she'd just heard the word for the first time, laughing her head off at how it sounded every time.

Thinking about Janey last night, we realized we felt delight in how she was acting, delight in things she did that all had a connection to her autism.  Typical 10 year olds would not probably do those things.  They were more two year old type behaviors.  But we loved them.  Janey's good moods are a treasure, especially coming off a few tough weeks.  And her behavior was made more delightful BY the autism, not DESPITE it.

My point here is that acceptance is a pretty lukewarm word.  I certainly accept Janey, but my relationship with her autism is more complicated than that.  Sometimes, I feel autism despair.  Sometimes, I feel autism delight.  Sometimes, I want to change the parts of autism that make life hard for Janey, but some parts I would be very sad to see go---some parts of her that relate to her autism are wonderful.  Catch phrases don't really cut it when describing how I feel about autism.

Monday, October 6, 2014

Keeping on blogging, even when it's hard to do

Over the seven years I've had this blog, I've almost never NOT felt like writing for it.  Even on the worst days, writing was something that helped.  This past week, though, is the very first time I've had less than full enthusiasm for writing here.  

I've noticed, in reading other autism blogs, that most of them deal with kids making a lot of progress.  I don't think this always means that every kid with autism DOES make a lot of progress.  I think it means that when the progress stalls, the writing does too.  It's easier to feel excited about writing when there is something new and exciting your child is doing to talk about.  I think this is also one of the reasons that there are less blogs out there featuring kids with low functioning autism (and yes, I do hate the term, but for now, it's the term that will let people understand what I mean).  Another reason of course is that LFA doesn't leave a lot of time or energy for blogging, but it's more.  I think people want to write encouraging and upbeat things.  They want to help others.  They want to give hope to those with newly diagnosed kids.  When that gets hard to do, it's harder to find a way to write that feels useful.

The past year with Janey has been a very discouraging one, overall.  After starting her 3rd grade year with enthusiasm and excitement, after looking forward to her being part of a brand new K-12 pathway at the school I loved, after having high hopes when she showed signs of being able to read---things felt like they came crashing down.  Janey's behavior escalated, and I gradually had to accept that the school she was in was no longer the right place for her.  Sometimes I feel like it's only now it's really hit me.  Although I know I'm being a little dramatic in saying it, it's hit me that she couldn't be included in a school called a total inclusion school.  That was and is tough.  

Janey's behavior has changed in quite a few ways over the past year.  It was about a year ago she first started biting her own arm, a behavior that now shows itself almost every day.  She also started lashing out by pulling people's hair, scratching them and occasionally biting them.  This doesn't happen all the time, but it happens enough to put people around her on edge.  The screaming escalated to a new level.  When Janey screams now, it's absolutely incredibly loud and horrible to hear, because she sounds like she's in extreme pain.

If I'm totally honest with myself, I also have to say Janey talks less than she did a year ago.  Sometimes I make myself go back and read old blog entries, where I often quote things she has said, and she is not currently talking as well as she did at almost any point in her past.  Her speech at this point is either requests or quotes---almost never anything else.  The requests are only in regards to food, videos, sleep or hygiene (wanting a shower or her hair brushed, things like that).  The quotes generally have nothing to do with anything actually going on.

Janey's sleep is also often very disrupted.  It comes and goes, but there are often two or three weeks in a row where she wakes up every night at 2 or 3 am and doesn't go back to sleep.

I have to admit it---I'm depressed and discouraged lately.  It's hard for me to be encouraging in my writing.  It's hard for me to look at the bright side of things.  

However, I'm going to keep writing.  I feel like I have to, for myself, for Janey and for the other children out there with low-functioning autism.  Unlike those with higher functioning autism, children like Janey are not going to write their own blogs (and I know there are rare exceptions, but those are children who HAVE found a way to communicate, which means they CAN speak for themselves, and it is great they can).  I want to be the voice Janey can't be.  I want to be honest about her life, and our life.  I owe that to her.  I want to be a voice for the kids like her---the ones that don't make for conventionally uplifting writing.  I want to do that because despite that, she is a person of value, a person with just as much importance and just the same rights as any other child.  If I don't write the truth about life with her, I am hiding who she really is, and who she is is not something that needs to be hidden.  I love my daughter more than words can ever say, but I'm going to try to keep using words to give her a voice.

Wednesday, October 1, 2014

Guilt and Bus Aides

This year, it seems Janey has a one-on-one aide on the school bus, both ways.  This isn't something we requested, or something in her IEP, or that we were told was going to happen, but we don't have a problem with it.  The aide in the morning gets on the bus when Janey does, and the aide in the afternoon gets off when Janey gets off.  There's another aide on each bus, for the rest of the kids.

I am not sure why Janey got a bus aide.  I don't think she's had real problems on the bus, not that we've ever been told about.  I'm sure she has screamed on the bus at least a few times, and bitten herself, because it would be pretty surprising if she never had, but usually she seems pretty calm on there.  My guess is that once she even once showed that she could potentially be very distracting to the driver, they insisted on aides.  And that is fine.

When Janey gets off the bus, it's usually about two in the afternoon.  Tony gets home about five.  Those aren't easy hours.  I've been trying to figure out ways to make them better, and I've over and over thought about trying to find a class or program during that time.  However, something always stops me.  I woke in the night last night thinking about it, and I realized I just plain don't feel able to take Janey anyplace in the car by myself any more.  I do take her for short rides, once in a while, but the thought of driving any distance with her, just the two of us, scares me very much.

Janey is rapidly getting bigger.  She's going through a growth spurt.  Along with that, she seems to be far more prone lately to sudden rages.  They come out of no-where.  Things can seem fine, calm, and then suddenly, Janey lashes out.  She lunges at whoever is nearby, she smashes things with her fist, she bites herself, she pulls our hair, she screams her incredibly loud scream.  If this happened while I was driving, it could be a catastrophe.  If you've ever driven the streets of Boston, you know that it's crazy out there.  I am not a confident driver.  I need to concentrate while I drive.  I hadn't realized it consciously, but the fear of driving alone with Janey is the reason I haven't been able to move forward with afternoon programs.

When I woke in the night last night and realized this, my default emotion was guilt.  That's no surprise.  That's my default emotion for any situation.  But then I thought about the bus aides.  Professional drivers, with already one adult on a bus, decided it wasn't safe to drive with Janey unless a second adult was assigned to her.  I had a moment I rarely have when I thought about that---a moment of realizing I shouldn't feel guilty.

I read a statistic lately in an article about autism and aggression.  It was one of those articles which highlighted very high functioning people with autism, and emphasized how rare it is for autistic people to be aggressive.  That's an important notion to get out there, I agree.  The article had a statistic I hadn't heard before---that only 7% of autistic people are low-functioning with aggressive behaviors.  I wish I didn't have to admit to myself that Janey seems to be falling into that 7 percent.  I hope against hope she someone gets over the lashing out.  But for now, I have to live in the reality of the present.  And I have to keep her safe, and myself safe.  Until I can be sure that I can, I need to accept that I'm not going to be driving her around on my own very much.  And I am glad the Boston Public Schools transportation department helped me see that.