Searching for words

Last night, Janey said "I want to watch...." Then she stopped, and I could see she couldn't find the name of the show she wanted.  She started over "I want to watch...", and then did the same thing several more times.  Something about how she was saying it made me not jump in.  She had the look and the sound of someone who is searching for a word, who knows what they want to say but just can't quite bring the word up that moment.

When she started to look upset, which took a few tries, I did what I often do, and gave her a sentence with a blank.  I said "The show I want is named..."  I'm not sure why, but that sometimes makes it easier for her to fill in.  But this time, she didn't.  She kept looking at me, and the look started to break my heart.  It was lost, almost scared.  It was a look that said "Why can't I say this?  Why is what I need to say so hard to say?"

Janey's talking goes up and down.  There are times she talks more, and times she talks less.  We're in a low ebb right now, quite low.  I don't panic over this, because over and over I've seen that the talking will come back to higher levels in time.  But somehow, this felt like the first time she was aware of her own trouble finding words.  I could be reading too much into her look, but over time, I've gotten pretty good at reading her face.

After a few more attempts by me to give her a fill-in-the-blank, she said "The show I want is the show".  I then did what I had hoped to avoid.  I started listing shows she might want---"The show I want is..Angelina?  Blue's Clues?  Beauty and the Beast?   Kipper?  Wonder Pets?  Dora?  Barney?  Courage the Cowardly Dog?   Backyardigans?"  She stopped me there and said "Backyardigans"  So I put that on, and she seemed fairly content.  But still, I got the feeling that she simply was tired of the whole thing, and that she picked a show that didn't sound bad, not the show that she was really thinking of.

I thought about this incident a lot last night and this morning.  I wondered how I could have handled it better.  I wish she could manage the TV remote and pick the show herself, but it's so complicated to use Amazon Fire TV to pick a show that might be on Amazon Prime, Hulu or Netflix, that might be a video we've bought or one that is on the air---all of us have trouble with it.  I could try to get her to watch videos on her iPad instead, but she is very clear when she wants the big TV and not the iPad.  I could have a page of pictures of shows she likes to point to, but she rejects that kind of solution at home almost always, and even if she didn't, the list is limited to ones I think of, not all the ones that exist.

What I really wish is that she could learn more word retrieval skills.  She has a very good speech therapist at school right now, but her time with the therapist is limited, and I have the feeling there might be specific kinds of therapy that most help with word retrieval.  A few months back, I started trying to find a place for her to get outside speech therapy, and found it was far from easy.  There are lots of places that do autism therapies, but they are almost all exclusively ABA, and most word with kids under 13 only.  Janey will be 13 in two months. I have found iPad programs specifically to help with word retrieval, but they are aimed at people without intellectual disabilities, and quite honestly are far beyond Janey's abilities.

Before school this morning, I stopped Janey and said to her "I know sometimes it's hard for you when you can't find the word you want to say.  That must be very frustrating.  I saw how sad it made you last night.  I want to help you with that, and so does Daddy, and everyone at school"  I have no way of knowing how much she understood, but I am glad I said it, and she listened, and smiled at me.

There is so much about Janey that is mysterious to me.  How often does she settle for shows she doesn't really want, food that isn't what she is aiming for, songs playing that aren't really the song she wants, because she doesn't have the words?  Why can she sometimes talk so much more than other times?  How is it that she can remember endless song lyrics, or show dialogues, but not sometimes simple titles or names?  How can I help her?  And sometimes I ask myself the hardest questions of all---how is this fair for her?  Why does she have to struggle to be understood?  What would her life be like if she could talk more readily?  Those last ones don't have answers, I know---or if they do, they are beyond my own word retrieval skills.

New school show and my self-pity moment

Today was a year-end show at Janey's new school.  I've been to many, many shows at her old school, but this was the first one at her new school.  I was nervous, which is crazy, as not a lot is demanded of a parent at a school show but to sit there and clap.  Still, I was.  I wasn't sure exactly where in the building the show was (it's a BIG school), I kept worrying I had the date or time wrong and I kept thinking how I didn't know anyone there.  However, I knew those were fairly silly things to think about, and of course I made myself go, and I found the auditorium just fine, and got there at the right time and date, and sat down to watch.

The show was like most elementary school shows---lots of cute kids dancing and singing along to catchy songs.  Janey's old school was exceptional for shows---amazing, really, but I know that isn't the norm.  This show was sweet, and that wasn't why I spent half of it trying not to cry.

The reason for the crying?  I think it was when it really hit me.  Janey doesn't go to the Henderson School any more. She really doesn't.  And that made me sad.  And that was self-pity.  I was feeling self-pity because I liked going to the old school, seeing old friends, knowing most everyone, feeling like a part of it.  For someone like me, with what I'd have to admit is a dose of social anxiety at times, leaving a place I've come to feel at home at is not at all easy.

But for Janey?  The new school is great.  I was able to watch her teachers interact with her, and saw how much loving and caring attention she got.  I saw how adorably they dressed her up for the princess song she was in.  I talked to her teacher after the show, and she was wonderful.  Janey got upset near the end of the show, and her ABA therapist, another wonderful person, took her out. Janey looks happy at the school.  She is doing well.  She is still among the lower-functioning kids, even in a class with all autistic kids.  I could see that she needed much more supervision than the other children, and that on stage, she had someone right next to her, which was not the case with the other kids.  In many ways, it's like at her old school in terms of the level of support she needs, and I guess that shouldn't surprise me.  But now she is in an environment designed for kids with autism, and that is good.

On the way out, I saw Janey's old ABA therapist, Ken.  It was so great to see him, and to hear him say how very much he thinks we made the right decision about schools.  He knows both schools, and he said there is no doubt in his mind that Janey is in the right place.  That meant the world to me.  I know he would be honest to me if he didn't think so.  Seeing him also made me realize that I DO know a few people at the new school, and I will know more as times goes by.

I've been so lucky with Janey to have had so many people work with her that love her, that take good care of her, that understand her.  Seeing her today, even during my self-pity moments, sitting with her new teacher, smiling and happy and cared for, was a very good feeling.  I'll close with a picture of her in her adorable costume!

Janey's Five Step Video Viewing Progression

Lately I've realized that Janey's viewing of movies and other videos follows a very strict sequence.  It's helping me understand some of her previously mysterious fits when watching videos.

Stage One---I put on something new for Janey, on Netflix or on VHS (we don't do DVDs for her much, as she very much likes to handle them, scratch them and lose them.  And VHSs are a dollar at our favorite thrift store, in terrific shape)  This might be a show or movie I'm pretty sure she'll love, something about a topic she likes or with characters she likes.  For an example, recently it was Toy Story.  She likes that type of computer animation, and the music seemed like something that would appeal to her.  However, no matter how perfect the match is, the first viewing is a disaster.  Janey will watch a bit, seemingly interested, and then get very upset and ask for something different.  I used to try to leave on the new video a bit longer, but now, I just take it out.

Stage Two---Two or three days go by.  I don't mention the video.  Then, out of the blue, Janey finds it.  She shows her ability to read in that one specific situation by always knowing her videos apart, even if there are no pictures.  I am not sure how she does it, but she does, even new ones.  It might be font, or letters, or who knows what, but she does.  She brings the video to me, or if it's Netflix, often finds it on her own and puts it on.  I don't mention her previous reaction, and neither does she.  She watches it eagerly and seems to love it.

Stage Three---the video goes into heavy rotation.  We watch, for example, Toy Story day and night.  Janey memorizes it, and says bits of dialogue at random times.  If there are songs, she learns them by heart.  The video is on her mind all the time.

Stage Four---Janey is still enjoying the video, but is starting to get upset while viewing it a bit more.  Sometimes, she starts crying during it, and we use our set phrase "If a video is making you sad, we turn it off".  She will accept that at first, but then obsessively ask for the video, watch it a bit, and then cry again.

Stage Five----The video completely freaks Janey out.  She is terrified of any even slightly scary parts.  This is true of videos you would not even picture having any scary parts, like Kipper or Sesame Street.  She still asks to watch it now and then, but then gets hysterical waiting for the scary parts to come on.  The video is added to the pile of unwatched shows.

I think it takes quite a few viewing for Janey to understand to some extent the plot of shows she watches.  Her initial enjoyment is just based on learning the dialogue and songs, and watching the images.  As she watches the show over and over, she starts to get it more, and characters like Ursula the Sea Witch in The Little Mermaid or Sid the Bad Kid Next Door in Toy Story come alive for her, and they are pretty scary.

I've learned a few things from figuring this all out.  One is that with much repetition, exact repetition of the kind that videos provide, Janey learns first to repeat the elements, and then actually learns what is going on.  It's her way of progressing with learning.  Other people might first watch for plot, and then get so familiar with the show they start to memorize it, but Janey does that backwards.  The other is that when Janey suddenly gets upset, in other contexts, it might be something she's heard or seen a lot of times before that has now clicked in as scary.  For example, she recently became nervous about sirens, after hearing them for years.  I think she finally connected them to the fast vehicles with flashing lights, and they are finally scary to her.

It's interesting that echolalia, or delayed echolalia, seem like vital step in Janey's understanding of the videos for content.  Maybe repeating the lines in her head allows her to work on understanding them.  I wish she'd not have to get scared after the understanding kicks in, or maybe I wish videos didn't all seem to have a bit scary parts.  But gradually, in small ways, I sometimes feel like I'm starting to get Janey.

The inclusion school show

Today was a show at Janey's school.  Her school emphasizes the arts, so they have a lot of shows, with lots of dancing and singing.  I love Janey getting to participate in these areas, but I have to admit, the shows are tough for me.  Although Janey can sing and dance, she certainly doesn't, on stage.  I've heard sometimes she does in rehersal, but once she's actually up there, the best I can hope for is her not crying or throwing a fit.  She didn't today---she stood there, with the help of her wonderful aide Ms.. Clemmons, next to her friend Jaden, and although she looked slightly dazed, she was up there with the rest.  Here is a picture of her.  She and Jaden are holding teddy bears.  It's a song where the other kids are doing hand movements, and I liked a lot that Janey had the bear to hold.  It made it a lot less obvious that she wasn't doing the movements along with the rest.  In this picture, it even looks like she's doing a half clap.

There are a lot of amazing kids in her class and school.  Of course, I count Janey as one of them.  But today I was thinking about the other side of inclusion---the kids without disabilities.  I truly feel they too benefit greatly from having Janey, and Jadon, and the other kids with disabilities around them, as much as Janey benefits from being around them, and maybe more.  And if I go to the shows, or to classroom events, and feel depressed Janey isn't doing what they can do, that's missing the point.  I am watching them learn, as I am watching Janey learn.  I want Janey to be in the real world, the world with kids that have all kinds of levels of achievement.  Freddy thrived in that world.  Although we didn't know it, we were preparing him for Janey, but besides that, he met some great kids.  Last night, he talked for a long time on the phone to a former classmate of his, a boy with what I would guess is high-functioning autism.  I said something to Freddy like I was proud he had kept in touch with that friend, and he said "Why wouldn't I?  He's very cool"  When an inclusion school works perfectly, which it doesn't always do, of course, it creates a community of parents that care for not only their own children but the children their kids go to school with.  I want to have a heart that can delight in the accomplishments of all the kids in Janey's class.  I'm not quite there yet.  It's hard.  The pictures below show what I mean, a little.  Janey is there.  She is part of it all, but she also isn't.  She can't be, totally.  I love it that she is included.  It means a huge amount to me.  I love the adults that find ways to include her.  I love it that her classroom teachers, when finding out I was going to the afternoon show and not the morning, knowing that Janey would not tolerate more than one show well in a day, played with her during the morning show instead of having her go on and not be up to the afternoon show.  That is the kind of adjustment, of caring and understanding Janey, that happens all day and allows her to be both herself, a child with low functioning autism, and also part of her class, a class of cool, smart, interesting kids.  And it's why I go to the shows---not so much for Janey, but for her class as a whole, the class she is part of.

In a circle

Janey had her year-end kindergarten program today. She will be going to 1st grade in the fall, and this summer, she will go to a summer program for five weeks. I am feeling good about 1st grade---she will have great teachers, as she did this year, and I think (hope) it will be a smooth transition. I am not as sure about the summer program. The summer program here has a terrible reputation, but supposedly it's been completely overhauled. I will see what I think. It scares me to death to have Janey going to a school she's never been to (the summer program is held at a different school across town from her school) with teachers she doesn't know and I don't know. I am not sure exactly what I'm scared of. Everything. Having a child who can't talk in a meaningful way going off all day to a place you don't know about is very, very, very scary. I will drive her, I will see how things look, I will stay around at first, but I am still scared.

Janey had a good year in some ways. She was happy much more of the time than in previous years. She seemed to learn classroom routines, and she seemed to mature. Seeing her on stage at the program today, although her ABA therapist was right there with her holding her hands and keeping her in place, she was smiling and seemed more engaged. She did yell out with her fairly new autistic sounding yell that seems like a talking substitute a few times, but overall, she looked good.

In other ways, she made little progress. This is not the fault of the school, or her teachers, or I think me, or certainly not her fault. She just has a very hard time learning. Or if she is learning, she keeps it inside. I would say her talking is no better than, and probably worse in some ways than a few years ago. It's mostly single words, except for the delayed echolalia. She still can't answer Yes or No to questions. I think she understands us a bit more, and follows directions a bit better, but it's still very, very slow progress.

Tonight felt like a throw-back to the bad old days. She is screaming and crying non-stop. Maybe she understands on some level that her kindergarten days are almost over. Maybe something else is bothering her, that she can't tell her about. As I write, she is on my bed, screaming "Don't worry! I'll get you out!"---one of her Angelina Ballerina phrases, and then saying "Baba! Baba" for bottle (yes, she still drinks chocolate milk in a bottle. She can use a cup as well as any 6 year old can, but once a day or so, if a bottle makes her happy, she will have a bottle. Not that anyone said anything...) On nights like this, it's easy to feel overwhelmed, discouraged, like we are treading water and will drown some day. I hope not.

Never compare

If someone asked me my number one piece of advice for raising a child with autism (not that anyone has), I'd be ready for an answer---NEVER COMPARE. Never compare your child to "typical" kids, or even other kids with autism, or kids with other challenges like Down Syndrome. Just don't compare. It's a fool's game to compare.

Of course, I break that advice all the time. The worst, the very hardest thing, I've realized, is shows at school. I love the shows, I love the fact that the arts are a big part of Janey's school, but they kill me. I've tried to have a positive attitude about them, and have written here about that, but they are so hard. I am sitting there looking at a huge amount of kids Janey's age, and in my eyes anyway, every last one of them is far more advanced than she is, more with the program, happier...it's very tough. Janey is up there not doing any of the dances, or hand gestures, not singing although I know she could, starting to cry, having to be held by teachers, while it seems like every other kid is putting their all into it. The kids with Down Syndrome are amazing. I love to see their progress. The kids in wheelchairs blend right in---they are totally included. And of course everyone is doing everything they can to include Janey---but she stands apart. I am sure I notice this more than anyone else---everyone notices their own child most.

I guess things like shows are hard because a lot of the rest of the time, I play mental games with myself and simply don't allow myself to compare Janey directly to her peers. When I drop her off in the morning, I love seeing the other kids, and I don't think about how Janey doesn't do what they do. That's her school---the kids are so great to Janey that it seems like she has an important role to play. She is helping them, I like to think, as much as they are helping her. She is different, but not unequal, because everyone is being themselves. Maybe in shows, the fact everyone is supposed to be doing the same thing makes it harder.

Another hard time is the "cold" situation---when someone who doesn't know Janey starts talking to her as if she were a typical 6 year old. That doesn't happen much anymore, as now that Janey is older, I think it's more apparent to most that she isn't typical. She laughs or make noises that are more typically autistic, and more than once, when I have told someone she is autistic, they reply they could tell, that they could recognize it. That doesn't bother me at all. It means that people are more aware of autism than they used to be. It's part of my low-key mission---to tell people Janey is autistic so when they run into another child or adult with autism, they won't think "What a weird person" but might think "There's a person like Janey, with autism". But once in a while, someone will ask Janey questions you'd ask a typical kid---"How old are you?" "Where do you go to school?" "Do you have brothers or sisters?" and that is very hard. I usually jump in and answer for her---mostly because I don't want the asker to feel awkward with the silence that will ensue if I don't. But it makes me compare---those are questions that most 6 year old will answer with ease.

Another tough thing is work on the walls---the papers up on the walls that kids have done. I look at the ones from Janey's classmates last year, before she was held back, and it's like looking at a miracle. They can WRITE. They can READ. They can DRAW RECOGNIZABLE PICTURES. It's amazing. My mind plays a game, telling myself that what THEY are doing is the miracle, not the typical thing, and that somehow Janey is the norm, surrounded by geniuses. Somehow that's easier than thinking about how much Janey can't do.

So, if you can do it, my advice is not to compare. The times I can really do that, it's great. Those are the best moments---when Janey says or does something cute, when she is so overwhelmed with happiness by little things, like us playing with her jack-in-the-box or putting on the video she wanted, or taking her to the grocery store, or giving her chips and salsa, or playing catch with her, or blowing out a dandelion, or letting her pick out a shirt, or things like that. There are so many great moments with Janey that can be enjoyed best if we just think of her as Janey---not a 6 year old who can't do what 6 year olds should do, not as autistic kid, but just Janey---a special person in her own right. I'm not saying I don't want her to be called autistic. I like being able to educate people about autism. But at home, for just us, when we can just enjoy Janey as a family member, a beautiful, funny, interesting little girl who exists on her own, not as an example of anything, well, that's the best.

Happy moments but also asthma

Freddy's asthma has been acting up a little. He is the only one of the three that's never had an autism spectrum diagnosis, and not co-incidentally I am sure the only one I had a normal pregnancy with. He nursed for 2 1/2 years also. But despite all that, his physical health is much worse than William or Janey. They are both rarely sick and seem to have strong immune systems, but Freddy got sick all the time as a little guy, and now has fairly significant asthma. We learned to really take it more seriously this past summer when he wound up in the hospital for two nights with a terrible attack. Now he is on 2 daily medications and 2 more as needed. He needed them lately when his peak flow meter showed he wasn't moving air well, and he was coughing a lot. I kept him home from school for two days which made him very angry. He is very sociable and hates to be kept home. But he couldn't promise me he would take his medication every 4 hours at school, although it's there and he has blanket permission to use it, so I couldn't let him go. I think he doesn't like to be set apart by having to take it. I talked to his advisor about it yesterday and I think we have a handle on it, and his peak flow was better today. I have probably gone from not taking it all seriously enough to taking it too seriously, but that is what an extremely scary time in the hospital watching them trying to help him breath will do.

But yesterday felt happy too. Janey had a show at school, their school does a very lot of music shows starting with the littlest kids. I didn't want to take Freddy out, so Tony came home to take her to school and see the show. My happy moment was dressing her up for it. It was somehow one of those moments where parenting is exactly how you once pictured it. I put her in a jumper dress and a turtleneck and tights and cute shoes, and her hair is long and with no bangs, back in a pony tail, and she looked so wonderful. She was in a very happy mood, and just the last week or so she seems to have changed from a toddler type to a little girl. I couldn't stop looking at her and crying a little. In some ways this is all my dream life, having a sweet little girl and two interesting and fun and smart boys and just watching them grow. I have to let myself forget all the not good parts sometimes and just be grateful for what I have.