Search This Blog

Thursday, March 8, 2018

Fill-In-The-Blanks talking

We've always done a bit of fill in the blanks talking with Janey.  It goes something like "I am crying because...." and hoping she'll fill in the reason, or maybe "The food I want is...."  We've had mixed results over the years---generally, honestly, not that great results.  But once in a while, it works.  However, lately, for whatever reason, it suddenly seems to be working very well, and it feels like a little bit of a communication breakthrough. 

Here's a recent conversation with Janey, with her words in italics.  The background is that she wanted a shower just before I knew Tony was about to come home and give her a car ride, something she'd want even more. 

"A little bit ago, Janey wanted to take a...shower.  But Mama said...yes"

That's something we see a lot in the fill in the blank talking.  Janey gives the answer she WISHES would have been the answer.

"Janey wishes that Mama had said yes.  But really, Mama said...NO!"

My no responses are always told by her as being extremely loud and mean sounding!

"When Mama said no, that made Janey very....angry.  Janey was so angry that she...hit Mama"

Another example there of the answer being what, I think, Janey WANTED to do!

"No, Janey didn't hit Mama, and Mama was very proud Janey remembered not to hit.  Instead, Janey....(here I opened up my mouth very wide to give her a hint)...screamed....very, very...loudly!"

"And then Mama said if Janey could calm down a little, when Daddy got home in a minute, he would take Janey for ride.  That made Janey feel....happy.  And Mama was happy because Janey was being such a good girl"

There she surprised me a bit.  I was going for "Janey calmed down".  I try not to use terms like "good girl" too much, but I guess I must, as that's what she said!

Today is a snow day.  Tony is home as well as Janey.  First thing in the morning, Janey was ready once again for a car ride.  We did a little fill in the black talking after we told her no to that.

"Janey wanted to go for a car ride, but Daddy said...YES!"  

Again, the answer she wished for!

"No, actually Daddy said no.  He said no because outside there is lots of....snow"

We were surprised by that.  We had mentioned the snow, but we weren't sure Janey had made the connection.  It was so good to know she had, that she understood there was a reason for no car ride. 

"Yes, there's lots of snow outside.  And if we drive in the snow, the car might...go smasha-la-rasha!"

It's possible I've used the term "smasha-la-rasha"....

A third great round.  Janey was at loose ends a bit ago, not happy at all. 

"You know, Janey, today things seems a little different, and that can be scary.  Things seem different today because there is"

That was a great one.  I hadn't been talking about how this was a snow day---I just wanted to see if she realized that it was a day that would usually be a school day and it wasn't.  I've known for a while that Janey has a very good idea of what each day is supposed to bring, and she really doesn't like days off in the middle of the week, but this was the first time I've been able to kind of prove it to myself.

After we have a conversation like those above, I've noticed that Janey gets very, very happy.  After that first conversation about the shower and car ride, Janey gave me a huge hug, and then that look, the look I love so much, the connected and contented look.  It's a look I only get once in a while, a look that is hard to explain but that I think a lot of you out there know.  It's the look of minds meeting, of a connection without barriers.

It's wonderful to hear what Janey has to say.  And the fill in the blank method seems to work better than almost anything we've tried to really get to hear her own opinions.  I think it's because her main speech problem has always been word retrieval.  She knows so much, but getting it out is so hard for her, as is forming sentences.  If we take away a lot of the variables and work, if we make it so all she has to retrieve is one word or phrase, not a whole sentence, it seems to free her up to say what she wants to say.  And I love, love, LOVE knowing what she wants to say.

Monday, March 5, 2018

The Family Motto

When the boys were young, before Janey was born, I read a parenting book that talked about the importance of having a family motto, a family mission statement.  I wasn't really sold, especially because most of the examples given in the book were of families developing a motto that spoke to how important high academic achievement, or charitable giving, or constantly striving for excellence were, and unless most kids the ages of mine were far more forward looking than my boys, I didn't buy it.  But out of curiosity, I asked Tony what he would pick for a family motto, and he said "Enjoy Life!"

I've thought often that really is pretty much our family motto.  Of course, there needs to be a background of The Golden Rule type thinking, because if enjoying yourself involves hitting each other or petty crime, that isn't what we are going for.  And I hope we taught the kids basic respect---for us as parents, for teachers and friends and themselves.  But when it comes down to it, life is pretty short, and if you aren't enjoying yourself at least a good deal of the time, something probably needs to change.

What's making me think of this motto lately is a few essays or posts I read by autism parents lately.  (and here I should include a thank you to the amazing mother of Sophie, who has a Facebook page I greatly recommend, "On the Train With Sophie", as I don't do a lot of reading about autism online, and I wouldn't have read the posts unless she had referred to them on her page).  One was a video post by a mother talking about the sadness she felt over realizing her son, basically, wasn't ever going to be typical.  The other was about going to see Elmo on stage, how a mother had to force her son to go and endure the stares of those around her.

I won't put down the mothers involved, or judge them.  It's a long journey with all mothers of autistic children, and we all aren't going to agree or feel the same as each other at every point. 

However, I realized that the motto we made up in a laughing moment years ago has actually helped a good deal with how we view Janey and how we make decisions about and for her.

I've despaired often as I've gone through life with Janey (and life in general, of course) but I don't think I've ever felt despair specifically that she was not ever going to be typical.  Most of the despair I've felt is that she wasn't happy, and that I wasn't happy, all of us weren't happy, because we couldn't find a way to help her be happy.  The fact that she will never go to college, or have a job, or live on her own---I wish she could do those things, because they can be sources of happiness, but they certainly aren't the only route in life to happiness.  More than I'd have guessed, the academic and vocational limitations that Janey has don't really upset me at all.  And that ties back to the family motto.  You can certainly enjoy life without college, or a job, or your own home.  Sometimes those very things bring a lot of UNhappiness.

There isn't any one right way to be happy.  The mother knowing that if somehow she could get her child to go see Elmo, he would like it---well, maybe, but the pain to get there?  There are a lot of things in life Janey might enjoy if we worked hard at getting her there, but is it necessary?  There's a lot she enjoys hugely that she can do right now.  Happiness doesn't need to be mainstream.  Janey loves to ride aimlessly in the car listening to music.  She loves to watch certain episodes of TV shows time and again.  She loves to have her father cook for her.  She loves to "steal" our coffee on weekends.  She loves to take showers.  She loves to eat chips in the driveway while the stray cats try to get some.  She loves to dance with her brothers. So---maybe she'd love Disneyworld, for example.  But first we'd have to get her on a plane, we'd have to get her used to long lines, we'd have to keep her contented somehow while we waited for the special moments she might really enjoy.  Is it worth it?

Of course, there is more to life than enjoyment.  But as a goal, as a motto, I think it works well, perhaps especially for Janey.  There is so much of life that is hard for her, just by being someone living a bit less typical a life than most.  So why not aim for as much of her life to be happy as we can?  Why despair over what she isn't going to do, when we can instead try to make what she CAN do enjoyable for her?

Wednesday, February 28, 2018

What Community Means

What does it mean to be part of the community?

I got a list of summer camps today.  There were hundreds listed.  Janey would be welcomed at none of them.

When searching for after school activities in this area, a big urban area, there are almost none that would accept Janey.  One great exception, which is not close enough to home for us to utilize it, is the Boys and Girls Club.  I wish the one with the fantastic sounding programs was not about an hour's drive from us in afternoon or evening traffic.

A younger Janey and her brother William, in front of our house
The city is full of plays, stores, concerts, museums, restaurants, movies----almost none of which I could take Janey to.

There are lots of wide open spaces around here.  Might be great for Janey---if not for the dogs off leash that run up to her, with well meaning owners saying "Oh, he won't hurt her!  He loves kids!".  Yeah, but Janey is terrified of your dogs, and that makes her unable to use yet another public place.

So, sometimes when I think about including Janey in the community, I get discouraged.  Or I laugh a bitter laugh.

This would be much harder to take if it were not for the fact that in our own little neighborhood, we have found community.

Our neighbors on both sides are wonderful people, people that delight in Janey.  When Janey screams outside, or laughs manically, or just is her own unique self, it means the world to me that I know she is accepted and understood by those living closest to us.

Anyone who has read this blog knows about Janey's love for the "ice cream store", a store that is currently a 7-11, although it's changed names a lot.  We go there almost every day.  She is always welcomed by the staff, and increasingly, by the regular customers.  I can't tell you how many little kindnesses she has been shown there.

The closest few grocery stores know Janey well, and go out of their way to make our shopping with her not only possible, but fun.  One of the workers at the local Shaw's Supermarket has a grandson with autism, and has actually given Janey presents and always gives her a hug.

Janey's new bus aide lives in our neighborhood.  She walks over every morning to ride the bus with Janey, and her sweet, kind nature makes our mornings.

We have a little bubble here, a small world where Janey is truly included in the community.  We have often noticed that she is more accepted here even by people who don't know her than she is in many places.  Our neighborhood is working class.  It's never been gentrified, and probably never will be.  It's not a fancy place.  And perhaps that's part of the reason it's accepting.  People here are not necessarily living the American Dream, defined strictly.  There seems to be more room in their worldview for those who might not be following the script of "good schools, good college, good job, nice house, good vacations, comfortable retirement".

So what does community mean?  It means a place where you are included, where you are accepted and valued and allowed to be part of the action.  We might not have a community in the sense of formal things like camps or lessons or culture, but our neighborhood has made Janey a community member, and that means so very much to us.

I wish the whole world was open to Janey.  In an ideal world, it would be.  But for now, it's good to have our own little corner of reality where Janey is part of the community.

Wednesday, February 21, 2018

"Want to go away?"

Janey is 13, a teenager. Most of the time, her age doesn't make a huge difference.  She doesn't operate in most ways like a teenager, not in terms of what kind of help she needs, what kind of interests she has, what she learns in school or does outside school.  But there are parts of being a teenager that come through anyway, and it's quite something to see.

My teenager
The big one?  That she doesn't always want me around.  That shocked me when it happened.  For so many years, it wasn't just that I had to be near Janey for safety, but that she wanted me near her.  I couldn't really picture her wanting it otherwise.  It wasn't that she was particularly clingy, but just that she didn't seem to have a concept of me as someone separate from her.  I helped her do what she wanted to do.  I was just sort of part of the scenery.  But now...

This week is school vacation here.  Yesterday, we didn't have much to do.  We went to the store in the morning, we did a little time outside as it was nice out, but mainly, Janey wanted to watch videos.  And she wanted to watch them without me in the room.  The phrase I heard the most often yesterday was "Want to go away?"  Slight variations at times---"Want to go in that room?" or the non-verbal push out of the room.  I got the message.  She didn't want me there cramping her style.

It's hard for Janey, I am sure, as she isn't usually quite able to put on the shows she wants herself.  I've tried very hard to teach her to use the Amazon Fire TV remote.  That is where most of her shows are, in their interface, which is a fairly complex mix of various streaming services and also shows we have purchased for her to watch on demand.  I think Janey could learn it, though.  She uses the iPad with such ease it's amazing.  She knows how to move around programs and minimize them and start thing with gestures that I don't know at all.  But we aren't quite there yet with the TV.  So Janey needs to ask me constantly to put on the shows she wants.  We use an improvised sign language to pick episodes---I scroll and she points in the direction she wants me to scroll, and then points to herself when the episode she wants comes up.  There are pictures with episodes, but I do think there's a little reading going on too.  So even though Janey wants to be alone, she needs to come get me often to put shows on, as she likes to change shows constantly.

Yesterday she tried hard to be independent by watching VHS tapes.  She knows how to put those in and take them out, and she is remarkable at finding the one she wants from the huge box we have.  We've long ago lost all the covers, but she can tell which is which, from symbols or fonts or sometimes, it has to be, just plain reading.  However, she has not grasped rewinding.  She hates rewinding.  Most of the tapes are at the ends, because it's only if she REALLY wants a show she will tolerate me rewinding the tape.  Usually, after about 10 seconds, she stops me and hopes somehow the rewinding has happened extra fast.  But even with those challenges, I could see how happy she was puttering around finding tapes and putting them in.

Of course, even when Janey tells me to go away, I can't go far.  She needs me often to come back, and she really can't be left alone.  I go into the next room, and keep a sharp ear open.  I jump up if I sense there's anything I need to see---food being strewn around, a need for toileting help, anything like that.  But I'm out of direct sight, and that makes Janey very happy.

In some ways, it would be easier if Janey was not developing the typical teenage need for parents to not always be in her face.  The problem is that I can't see a future where she can have much independence except as we do it now---in the next room.  There are little, little things we can do.  We hold her hand less now---she is not a runner and she stays close to us, so that's possible.  In stores, we keep her in close sight but do sometimes let her walk away from us down an aisle to get what she wants---something she loves to do.  As long as we can see her, it's okay.  And she goes to school, of course---and she is horrified if I mention something her teacher told me happened at school.  She likes it to be her own world.

How do I respect Janey's need to grow up, to be her own person?  How does that work when it's just not ever going to be safe for her to really spread her wings?  I hope we can find a way to sometimes do what she so firmly asks us for---"Want to go away?"

Tuesday, February 6, 2018

Every Morning is a Triumph

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

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

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

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

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

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

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

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

It is a triumph that she is off to school.

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

Monday, February 5, 2018

The Pepsi Challenge of unlocking Janey's knowledge

The other day, Janey and I were at her favorite after school place, the "ice cream store", which has been various chains and is now a 7-11.  She wanted soda, and I took a diet Coke out of the cooler.  She usually drinks just a sip or two and then Tony has the rest, and he is diabetic, so we get diet.  I hate diet soda, and I try to avoid corn syrup, so I don't drink regular soda usually (and of course all soda is unhealthy and we shouldn't have it and all that...but anyway...)  As we walked toward the register to pay, Janey yelled out "NO!"  When I asked her what was wrong, she grabbed the soda from my hands and said "No!  PEPSI!"

Janey looking ready to take on the world
Well, that was a huge surprise.  I don't think we've ever used the word Pepsi at home.  Not that we are opposed to Pepsi, but we just call soda "soda".  I had no idea, no idea on earth, that Janey would have the slightest idea there is a difference between Pepsi and Coke, or in fact even that there is a difference between store brand soda and brand name soda.

We went back to the cooler and I got a diet Pepsi out.  Then Janey surprised me again.  She said "NO!" and put back the diet Pepsi and got out a regular Pepsi.  Again, I was stunned. I had no idea she knew there was a difference between diet and regular soda.  So we bought the regular Pepsi, Janey had her usual few sips, and that was that.

I've been thinking a lot about this.  Janey doesn't often tip her hand and let us know what she knows.  Weeks or even months can go by without her saying a single new word, or doing anything really new.  But it's up there, stored in her brain.

When I got Janey's progress reports from school last Friday, there were surprises there too.  In OT, she has been typing the letters of handwritten words into the computer, to get the YouTube video she wants.  I was shocked she was able to do that, to match up written letters with keyboard letters.  The report said at first she typed each letter multiple times, but now she was learning to just hit each one once.  She has also been identifying classmates using TouchChat, an assisted communication program.  I didn't know she knew her classmates apart, to say nothing of being able to pick out certain ones.  At home, she often has trouble giving the right names to her two brothers even.

The problem with knowing that Janey has knowledge she doesn't let on she has is that there isn't always, or even often, a way to get at that hidden knowledge.  It's not very transferable from one context to another.  Like the thousands of songs I know that Janey knows by heart, the knowledge is stored in her brain but comes out only when she wishes it to, when the moment is just right.

Sometimes, though, I think Janey wants to access brain files and she can't, or she can't translate what she wants into speech.  The other day, she came home singing a tune I didn't recognize.  Then she wanted a video, and kept saying names of videos and then getting upset when I actually put them on.  Finally, after a long run of this, by chance she saw the icon for "Yo Gabba Gabba".  I read through the names of all the episodes, and she stopped me at one.  I put it on, she smiled a huge smile and in a minute I heard the tune she'd come home singing.

I was almost in tears thinking how it must all feel.  She knew exactly what she wanted, but the words didn't come.  I didn't remember the tune, and she couldn't think of "Yo Gabba Gabba", or couldn't get her mouth to say the words.  I'm glad we figured it out, but how often does this happen to her?  I know how I feel when something is at the tip of my tongue and I can't quite access what it is.  That's a very, very frustrating feeling.  What if I felt that all the time?

William and Freddy always picked Coke...
I wish I knew how to better help Janey say what she wants to say.  I am sure that much of the time when she acts out and I don't know why, it's from not being able to communicate.  I need to keep in mind the Pepsi incident, and try harder to give Janey a way to have her say, to get her non-diet Pepsi.  It's my personal Pepsi Challenge.

Wednesday, January 24, 2018

Jealousy, Anger, Boredom, Fear....

In my own mind, there is a list of acceptable emotions to have as a parent, especially the parent of a child with autism. Happiness, pride, love, determination, hope, curiosity, amusement, empathy---you'll notice the list is full of positive or encouraging feelings. But there's also a list of feelings I classify as, if not forbidden, at least not to be spoken of much. I'm going to try hard here to be honest about some of those.


In my ideal version of myself, I'm never jealous of other parents or kids. I delight in what Janey can do, and never think about what other kids are doing. In reality, sometimes I am so jealous it's hard to describe. I see other girls her age on Facebook, doing all the regular 13 year old girl things, and I can barely stand it. I look at other mother/daughter relationships, with all their ups and down, and I long for that kind of relationship in my own life. Every child with autism that functions at a higher level than Janey can make the green-eyed monster come out in me. The jealousy isn't all the time, but when it shows up, it's powerful.


We got a new couch recently. For the few of you that have seen our furniture, you know it was highly, highly overdue. It's nothing fancy, but I had this dream of it looking fairly good for maybe, say, a month. This Sunday, as Tony drove Freddy back to school and I stayed with Janey, against my better judgement, I went to the bathroom while Janey was watching TV. In the few minutes that took, Janey got a bottle of salad dressing out of the refrigarator and, for reasons known only to herself, poured the whole bottle on the new couch. I don't get angry that easily, but I made an exception there. I was furious. Life with Janey presents a lot of moments like the Couch Incident. In some ways, it makes no sense to be angry at Janey. It does no good, I don't think she usually gets why I'm angry, it doesn't do anything but get us both worked up. But having a child who does inexplicable and destructive things on a fairly regular basis---yes, I get angry sometimes.


For some reason, this feels like one of the most taboo emotions to have when dealing with your autistic child. I feel like I'm supposed to consider every moment an exciting learning opportunity, a chance to teach and help. However, the truth is, sometimes life with Janey can get boring. Her favorite thing to do with me is what she calls “Snuggle on Mama's bed”. In reality, it's her bed, and it's not usually really snuggling, it's lying there next to each other. My role in this game is to sing little songs and recite nursery rhymes and otherwise carry on a monologue. Sometimes this time feels wonderful, a time of connection between us. Other times, though, I am just plain bored of it. Janey doesn't want me to sing or recite or talk about anything new. She is open to new music in the car, but not when we are snuggling and I'm singing. She doesn't want to talk herself, or be asked questions, or listen to any books except a few nursery rhyme ones and occasionally “Go Dog Go”. I'd say we spend a couple hours a day in this mode. And it gets boring. Very, very boring, at times.


Recently, there's been attention in the news to the hideously high rate of abuse of those with special needs. I can't read through these articles, but I've read enough. When I think about that kind of thing...well, often I just can't. The fear would overwhelm me. And in the background, there is a fear that never ever goes away, the fear of what will happen to Janey when Tony and I are gone. When I think about her in any kind of situation where she is scared or confused or being hurt or not cared for---the fear is horrible. Add to that the fear that was planted, planted deep, when she lived with a burst appendix for three days without us knowing, the fear of the harm that can come from her lack of ability to communicate well...the fear is always, always there.

There you have it---the emotions that often get left out of what is openly discussed when talking about this special needs parenting gig. It's not an easy job. It's the job I'm committed to for life, and my love of Janey is my pay. But like any job, no matter how well paid, there are days you just want to gripe, to speak openly about the sometimes tough work conditions with others on the work site. Thanks for listening.