Reflecting on progress at the Whole Foods

At times, progress with Janey can feel glacially slow.  It can stop for long periods, or even go backwards.  However, yesterday morning during a trip to Whole Foods, I realized that Janey has made a lot of progress in the past years, and even just over this summer.

It started with the car ride, and the music in the car.  Earlier this summer, we were going crazy with Janey's constant need to have us switch songs.  We would hear about 10 seconds of a song, and she'd say "Music, please!  Music!" which meant she wanted us to go to the next song.  We decided to gradually stand our ground on a few songs here and there, just calmly saying "I really like this one!  I'm going to listen to it!"  Then after that song was done, we'd switch as much as she wanted to for a while more.  It was surprising how quickly she got used to listening to songs that weren't her total choice, and actually liking some of them.  On this ride, I played a song list of songs from the early 80s, my high school era, and Janey seems to like that era too.  She rocked out a lot and I was very happy!

Janey at the Whole Foods

At the Whole Foods, I realized as we went in that I really don't hold Janey's hand in stores any more.  She's never been much of an eloping threat.  She doesn't run away from us much.  I still always hold her hands on the sidewalk or in parking lots, as she isn't as aware of car danger as I wish she was, but in stores, she does extremely well just walking on her own.  It makes it easier for me, and more fun for her, I think.

I told Janey before we went in that she could pick out some salami.  That's her biggest treat, the extremely expensive salami rack at the Whole Paycheck.  She picked out some very thinly sliced kind that I think if you stuffed it all in, you could eat in one bite, at a cost much closer to ten dollars than five, but a promise is a promise.  And I realized she totally understands now that you have to pay and get out of the store before you eat.  We used to wait until the very end of the trip to get her treat, and then if Tony and I were both shopping, we'd buy hers separately and go right out for her to eat it, but she happily this time dropped it in the cart and didn't mention it while we shopped.

As we walked the aisles, Janey started singing "Oh Susanna"  I love to hear her sing, and she wasn't at all loud, just tuneful.  And we got looks, but not really stares.  Or maybe I'm made progress too, and I don't see things as stares.  We got a lot of smiles, and I felt proud of Janey.  I'm almost always proud of Janey inside, but this was a different kind of proud, a feeling like "Sure, she's different, but she's also so cool, so pretty, so interesting, just a neat kid"  I was on a bit of a high, just thinking how wonderful it was to be walking the store with so few worries about Janey.

We checked out, Janey still being patient, went out to the car, and I asked her if she wanted the salami in the car.  She said no, so I put it with the rest in the trunk.  On the way home, she asked for salami about three times, but each time, when I reminded her we'd have it at home and that it was in the trunk, she accepted the answer calmly.  We got home, and she ate her salami in about two seconds flat.

Janey's reserved look, like at the Five Guys

Today, Freddy and I took Janey to Five Guys for lunch.  Janey looked nervous as we got there, and said as we got out "Whole Foods?"  I said today we were going to a different place, and she didn't fight it.  She said "no" at first as we were at the door, but we coaxed her in, saying "You can have peanuts and french fries!"  She wasn't exactly thrilled to be there, no big smiles or anything, but she sat and eat and behaved.  Thinking about that, it's almost a bigger deal than the Whole Foods, that she would do that well at something she didn't prefer.  She did a whooping kind of scream a few times at the end, not her angry scream but more like a "I just feel like making noise" scream, and we reminded her to be quieter, and she listened and did.  I again noticed looks, but didn't feel they were stares.

It's been a long summer.  And a hugely hot and humid summer, a lot of the time.  But for the first summer in a while without summer school, seeing Janey the last few days, I do think there's been progress, behavioral progress especially.  It's a wonderful feeling, seeing that.

School starts two weeks from today.  I'm still keeping close tabs on that special day.  But I don't feel desperate or close to breaking, as I've felt some summers.  My Janey is growing up, and our journey together, to mutual understanding and compromise and acceptance, is marching on along with the years.

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.

A tough decision

The Saturday respite for Janey has been a nice break off and on over the last few months.  I've been unsure about a few aspects of it, but Janey seemed to be enjoying it, and we certainly very much needed a little respite.  That's why it was very tough today deciding to not send her, after driving to the respite house, and deciding we mostly likely won't be sending her any more.

I don't want, in any way at all, to put down the respite.  They seem like great people, providing a service that is hugely valuable to many parents.  I am so glad they exist.  But right in their literature, it does say they can't guarantee a ratio of caregiver to child more than 3:1, although they said it's often 2:1.  In reality, Janey needs one to one care, or a environment like school where there are many people looking out for her.  She is not able to keep herself safe, she is prone to running away at times and she needs help with most all aspects of daily life.  The literature also said they can't serve kids with extreme behavioral problems or self-injurious behavior.  Janey at times has been known to have both.

This morning, when we got there, there were around 6-7 kids already there, and one woman as a supervisor for everyone. She was also checking people in.  Tony and I of course didn't leave Janey right then.  We didn't talk to each other, but we both were thinking that we needed to wait until more staff showed up (we were right on time, not early).  We waited about 20 minutes, and one more staff person did show up, but so did about 6 more kids.  Tony and I spoke briefly and decided we just couldn't leave Janey.  They were planning a trip to see Disney on Ice, and I couldn't really picture it working out for so few people to be watching that many high needs kids.  As we were leaving, one more person showed up, and when I told the woman checking people in that we were leaving, she said more people would be there.  So I am sure they would have their stated ratio before they left.  And truthfully, although I don't know the diagnosis of the other kids there, I think most of them would be fine with that ratio.  Several were in wheelchairs, several other pretty high-functioning seeming kids with Down Syndrome, and the other kids seemed fairly docile.  But Janey was already running around.  I couldn't quite picture what would happen if she ran off in public, and I couldn't feel sure that anyone would always have an eye on her, as is necessary.

The woman in charge was a little defensive when I told her we were leaving as we were concerned about the level of staffing for Janey.  I tried hard to make the point that I wasn't saying they were doing anything wrong, and that I wanted to make their day easier, as she seemed stressed.  I am going to write her a letter to further explain what I meant, and to thank her for the time Janey did spend there.  I know they rely on volunteers, and I know people run late.  The thing is with Janey---every second is important to have her watched.  The fact more people were coming later wouldn't help her if she decided to wander off when they weren't there, or if she melted down badly and started hurting herself.  The program wasn't right for her, and that is not the program's fault, or Janey's fault either.

I had some feelings from the start that the staffing levels were not high enough for Janey.  But I needed respite, beyond badly.  I decided to try to trust it would work.  And it might have still worked.  But today, leaving, I knew in my heart I was doing the right thing.  I am prone to second-guessing, to thinking I am wrong if anyone in the world disagrees with me, but today, I knew, and Tony knew, that we couldn't leave her.  And I think Janey is relieved.  We'll see if she cries tonight, like she did last week after going, but for now anyway, she had been extremely cheerful and happy.  I have also been happy, in thinking that NEVER ONCE did I feel even a second of worry when leaving Janey at school that she would not be well enough supervised.  I haven't appreciated that enough over the years!

I will still look for respite for Janey.  We still need it.  And I hope it's out there, someplace.  But for now, we have school, and we will make the weekends as fun for her and for us as we can.

Summer blues

Janey is watching Curious George, which has become my 7-7:30 morning respite time.  She has no interest in it other times of the day, just that morning block!  And I am gearing up for the first day of summer.

I've never liked summer.  As far back as I can remember, the first day of summer felt like panic to me.  I like a schedule, blocks of time filled with predictable activities.  I enjoy the weekend, and holidays, but summer---that's a long time.  Couple that with my extreme dislike of hot weather, and even as a girl growing up in coastal Maine, probably the ideal summer location in the world, I didn't like summer.

With Janey, that feeling has grown.  Janey loves school.  There is barely a day she doesn't get excited to head out the door to school.  Every time I tell her it's a school day, she looks like I've offered her a huge treat.  This morning, I told her that school was all done for now.  She'll start summer school in a week or so, but that is never quite the same.  This week is open.

I feel sometimes like the worst mother in the world in how much I dread open weeks like this with Janey.  It's not that I don't want to be around her.  More and more, I love being around her.  But unfilled days for Janey are not lazy or idyllic or creative.  They are very tough.  Janey needs to be watched every single second.  She needs to be kept busy, or she either gets upset or retreats into a repetitive activity like seeking out paper to eat or things to spill.  Keeping her busy wouldn't be hard if there were more I could do with her alone.  But taking her on any kind of outing, like to the beach or a park or a museum, is not a one person job.  She is a runner, and I am not as fast as her any more.  She really needs at least two eyes on her, and one of them has to be pretty physically fit.  I still can take her to the store, but she hates stores except for grocery or drug stores.  I plan to do a grocery shop soon, but that doesn't fill up much of the day.  The few times I've tried taking her clothes shopping or browsing a craft store or the like---disasters. (read about one trip I particularly remember here)  She will tolerate being read to more and more, but not for more than about 10 minutes in a row.  She'll play with her iPad, but also, not for long periods of time, and she'll watch TV or videos, but aside from the fact I don't want her electronically entertained all day, she is too restless to do that for much time in a row also.

What do we do?  We often spend a lot of the day in the back yard.  If Janey has water and dirt to combine into mud, she's usually pretty happy.  But today is rainy and thundery, and even on days that aren't, after a bit Janey is soaked and filthy and we need to come in.  Often, I then turn to a long bath time, but Janey no longer is as interested in long baths.  So we piece together a day.  We read a little here, dance to music a little there, snuggle and sing a little, watch a bit of TV, eat, go to the grocery store, bug her brothers, pat the cats---and it's still 10 am and there's a lot of day left.

What would most 8 year olds do in the summer?  Well, most 8 year olds would have friends to play with.  With older brothers like Janey, they would have gotten into video games and would be playing them.  They would know how to read, and we could go to the library every day.  They would be able to entertain themselves with drawing or crafts.  They would be able to go to camp.  We could go to the beach, just the two of us.  We could go to playgrounds without the fear of them running away.  I feel guilty, as I always feel guilty, that I dread a day alone with Janey so much.  But thinking of it that way, I do see that a day with Janey is not a day with most 8 year olds.  There is never one adult alone all day at school responsible for Janey.  In the course of the day, she might be under the care of 6 or 7 different teachers, aides, therapists, etc.  They do a wonderful job, and I am extremely grateful for them.  I can't do their job alone.

And I worry I am coming across as complaining about caring for my own child.  Although it might sound that way, it's not the case. It is my job to be with Janey, and my joy.  But I wish for her that there were more options open for her open days.

Watch this video, and read why

Here's a link to a video made by students at Freddy's school, Boston Latin...

video

And here is the amazing part.  The video was filmed by a girl in Freddy's class he knows, and the boy named Paul in the video is a close friend who is also in Freddy's class.  And Freddy never knew, and the other kids never knew, that they shared something with each other.  Each has a younger sibling with autism.  When Paul describes life with his sister (and yes, he ever has a SISTER with autism, rarer still!), it could be Freddy talking.

The video made me cry.  It made me cry for a couple reasons.  One is the truthfulness of the boys talking.  They are not pretending autism is anything but what it is, but the love they have for their sisters is so very apparent.  They are honest about how hard the crying is, the running away---the same things Freddy knows so well about life with Janey.  It also made me cry because I felt less alone, in a way that's a little complex.  I know there are other families out there with autistic children, and autistic girls, but until seeing the video, I didn't know that Freddy knew others like himself.  He didn't either.  Boys his age don't talk about the challenges of life with an autistic sister on a daily basis. That is normal.  But now Freddy knows, and I know, that someone else, actually quite a few someone else's, that he knows well, gets it.  Gets it by living it.  When Freddy got home and I showed him the video, I was crying very, very hard, and not quite even understanding myself why I was, but I think it's the joy of connection---of knowing that you aren't alone, a feeling you all have given me, and now maybe Freddy can feel too.

One Man Show

I wish I could remember who is was, but someone at Janey's IEP meeting said that when Janey is not in a responding mood, working with her is like a one man show.  That was such a great line to describe how it can feel when you don't get any responses at all from her!  When Janey gets in that kind of mood, the completely non-responding mood, you can start to feel like a clown or magician or speech-giver working in front of a totally quiet audience.  You have no way of knowing if she's taking in any of what you say.  You can pull out all the stops, do everything she usually likes, and she just looks at you blankly.  That is one of the most frustrating of the states Janey gets into.

It was making me think about the many, many different modes Janey has.  That was a huge theme at her meeting---how inconsistent she is.  A lot of education for special needs is based on not moving on until the child shows competence at a certain level.  With Janey, one day she can blow you away with how well she knows a subject, while the next you'd think she didn't know a thing about it.  It is as extreme as what surprised me most at the meeting---that when Janey is in exactly the right mood, she can write her name "Jane", and in fairly good printing!  I was shocked by that.  On other days, she can't even seem to hold a pencil.

Janey's modes seem to come in groups.  For example, there's the talkative excitable mode.  That is when she seems almost manic---talking a lot but also very, very wild, sleepless, running around, reciting phrases.  Then there's the talkative relaxed mode, which is probably my favorite---when Janey is happy but not wild and talking a lot more than usual.  With the sad moods, there's loud sad, where she screams all day, and soft sad, where she is just not responsive, where she wants to be alone and sleep.  There's cheerful and cooperative, and there's cheerful and "Dennis-the-Menace"  Cheerful and cooperative might not involve much talking, but she will do as you suggest, and will do things like putting on her shoes when we say we say we are going someplace.  Cheerful and Menace is when she pours out bottles of soda or dishwashing liquid, where she runs away from us dangerously but laughing.  There's more moods than that, but you get the picture.

I want to think Janey can always absorb what is going on around, even when she appears to not be.  I've read about a few kids with autism that suddenly in their teens were able to communicate much better than in the past, and they said one of the main things they wanted people to know was that they were understanding what was being said even if they couldn't respond.  So even when Janey is in one-man-show mode, I am trying more lately to explain things to her, to tell her what noises are that she might be hearing, to read books to her, to take care not to say things around her that might upset her.  It can't hurt.

I worry a little about Janey getting bored, if she really can understand much more than she can demonstrate.  What if she can already read, at times, and we are over and over teaching her her letters?  What if she gets everything that is being said to her, and is sick of hearing my voice telling her the same lessons over and over?  But I think it's more likely that when she's in some of her modes, she truly doesn't know the same things she does when she's in a different mode.  Or more---she can't access the knowledge.  That part of her brain library is temporarily locked up.

I think if science could figure out this---why kids with autism can't always access what they know---it would be a huge stride forward in helping them learn.  I hope it's being studied, somewhere.

An hour's worth of Janey thoughts

1. We are in the car, driving to a Barnes and Noble about 20 minutes away, to get a book for William. I put on my iPod to my big list of assorted songs, and Janey loves that. We have it down---if she likes a song, I repeat it until she stops asking. Today's repeats are "Leaving on a Jet Plane" and "Baby's Got Her Blue Jeans On". It strike me as it has many times that when we listen to music together in the car, we are both happy on the same level. There's no autism between us. We both love to hear what song comes on next, to enjoy a catchy tune. She's my dream music-listening friend.

2. At the Barnes and Noble. I've found William's book and we head to the kids' section, to see if there's a Yo Gabba Gabba book. There isn't, but Janey is happy there for a while. A little girl is dancing on the small stage there, and Janey gets up and dances with her. The girl looks happy, but her mother I think quickly sizes up that Janey isn't "right" and calls the girl away. Another mother is reading to her obviously very bright little toddler. As Janey makes her sounds and flaps her hands, she gathers the boy in tight and then leaves the area. I think how they are reacts to Janey like many of us react to being around someone obviously mentally ill. We are too polite to stare or comment, but we don't leave ourselves open to somehow be caught up in the scene. Although we know logically it's not catching, a part of us still acts like it is. It's very isolating. And I can't help but feel hurt.

3. A few minutes later. Janey runs from me, holding a train from the train table. I yell "JANEY! STOP!" but she doesn't. She runs across the store, luckily not out into the connected mall. She hits a dead end, and I catch her, we walk over to put the train back, and I lecture her and tell her we have to leave now because she ran away. She has her "wild" look on, and is laughing a lot. I think how she probably enjoys the few seconds of freedom, the once in a while being out there without holding a grown-up's hand. And how it can't happen. And what that all means.

4. The cashier smiles at Janey as we buy the book, and says "You look very happy today!" I think about how much little things like that mean to me now, how much I appreciate kind words and friendly smiles.

5. We are in the car home. I think "pretty successful trip", my mind editing out the running away, the parents acting protective, all that. The bar is fairly low for successful trips. I think then about my daydream daughter, the one I had mentally before Janey. We would have looked at all the books, talked about what she wanted to read next, bargained over how many she could buy, debated library vs. bookstore. In short, she would have been a little me. And of course, even if Janey wasn't Janey, that was just a dream. But then, as we listened to more music, I thought about how my daydream daughter and I had never listened to music with the intensity Janey does. I told myself I was getting all "Welcome to Holland", and I laughed out loud. And Janey laughed too.

A Day at the Beach

We went to the beach yesterday, and had a great day, overall. It's wonderful when we can enjoy ourselves while Janey is too.

I worked a lot on something they have been doing with Janey at school too---teaching her to come back when called. I let her run a bit on the beach, not far, but a little ways, because of the nice long visibility. Then I would yell out "Come back, Janey!" and nine times out of ten, she did! I gave her a high five when she came back, and said something like "See? If you come back nicely, you can run around more!" She seemed to get it. However, the one time out of 10 she doesn't come back is the killer, and in most places, there's a lot less visibility and a lot more things she can get into than at the beach. But it's a start.

Janey loves the water and the sand. She is fearless with waves---they wash right over her head and she just laughs. When we wanted to sit on the beach blanket for a while, she just sat sifting sand in her hands, mostly.

The ride to the beach on the subway was a little tougher. Janey hasn't been on the subway much, and the noises bothered her. It was interesting and a little sad watching how hard she tried to keep it together, but after a few stops, she couldn't. I talked to her about the noises, how they were normal and just the train moving, and she did calm down some after a while, but with some loud crying and screaming first.

When we got to the beach stop, she got upset again, and actually told me why! She kept saying "This is NOT Ve-vere Beach!" "I want to go to the beach!" The other times in the last few years we have taken her, it's been by car, and climbing stairs out of a subway didn't make it seem like we were going to the right place. I reassured her we would see the beach very soon, and when we did, she was fine.

My friend Maryellen and her daughter went with the boys and me for the trip, and that was perfect, as there was a variety of eyes to be on Janey if mine weren't for a minute, but no-one had full charge of Janey every single minute. If someone does, it's impossible for them to have fun and relax, but if I have primary charge but know I can get a break when I need one, it's great. I can enjoy the time with Janey, playing in the waves, digging in the sand and just watching her enjoy herself.

I guess my conclusion here is that it IS possible to have enjoyable days out with Janey. They have to be doing something she likes, there needs to be a big ratio of potential caregivers to Janey, you have to be prepared for meltdowns now and then, but although that sounds like a lot, it didn't feel like it. It felt like a nice, relaxing day, something I need to figure out a way to have more of.

What to do, what to do...

I mean the title in two ways. First, summer school will be over Friday. I need to keep Janey busy and out of trouble for about a month until school starts. Literally, I need to figure out what to do with her, how to keep her happy and give her a good summer while also staying sane and keeping her safe. The options are fairly limited, and part of that is the other "what to do"---how Janey has been stepping up her game in terms of being naughty. I had a good talk with her great summer school teacher and great ABA specialist this morning. I told them about my tough night with Janey (more on that later) and they told me about some of her antics at school. The big one is the playground there. They sometimes go to a bigger playground down the street, but sometimes to the smaller school one. Janey likes the bigger one, and when they go to the smaller one, she is constantly on alert for ways to try to sneak out and go to the bigger one. The other day, she was watching the gate, and waited until it was opened by a teacher, looked around and saw that the figures of authority were across the playground, and made a run for it. She didn't make it, as they, like us, are always, always on alert for Janey, but they noticed how she is getting better at planning and more determined to get her way.

At home, it's a battle without end to keep her from destroying the house. The worst time for me is the time between when we get home from school and when Tony gets home, especially days the boys aren't here. That's about 2 hours, from 3-5. Last night, it felt like 200 hours or 2000. Janey had several goals. She wanted to get the Febreeze down from the top of the fridge and spray it around, she wanted to have some pepperoni, she wanted to run water in the bathroom sink until it overflowed, she wanted to throw crackers on the ground. Literally every time I was more than a few feet from her, she did something toward her goals---pushed a chair over to try to climb and get the Febreeze, worked on figuring out how to open our new fridge belt to look for pepperoni (which we were out of), run to the bathroom and turn on the water full blast, ask me for crackers, promise to eat them nicely, then toss them everywhere, and when told to pick them up, pretend to pick them up while actually stomping on all of them. I was at my wit's end.

And I truly don't know what to do to stop all this. I go down my list of ideas. Time out is useless, although I still try it. Yelling does less than no good. I try to "identify the antecedent" which is the behavioral approach, and it's pretty easy to identify---she wants what she wants. It's often a sensory thing, and I try hard to give her alternatives. The house is full of sensory toys, at one point yesterday I gave her a bath to let her play with water, she is always welcome to play outside in the wading pool, we have spray bottles with water I let her use in the kitchen or bathroom---but she doesn't accept substitutes. She doesn't care if I don't want her doing what she is doing. That makes little to no difference to her.

And taking her places, like playgrounds or splash parks, is terrifying. She does not stay with me. She runs, and I am increasingly unable to run as fast as she can. I have asthma, and I am 46 and not in Olympic shape. She is almost 8 and very, very strong and athletic. I can't pick her up any more.

I feel like I'm writing this post too often. But it's all that's on my mind lately. I do hope this stage passes. Meanwhile, I have a month to fill up. Somehow.

Hard to read --- lost to wandering

I happened upon this article the other day, and despite trying hard to stop reading it so I would stop crying, I couldn't. I read all the stories of autistic children lost to wandering. It's a very, very scary thing. I was struck by the fact many of the children were 7, and it made me think that it's a tough age for autism. Janey is developing her own will, and wanting to do her own things, and she is starting to attempt to "elope", as I have heard it often termed. Thankfully, her successful attempts have been very few so far. But several times she has made it into the cellar, and one horrible time she got away from Tony as a drug store and went to the car by herself. He watches her like a hawk, but it takes one second of distraction. It happened once at school, under the watch of a teacher I would truly trust with my life. And lately her special ed teacher has reported she's been running in the courtyard where they have recess. The school was designed in the 50s, but it was like it was designed for autistic kids, as recess is in a huge courtyard in the middle of the donut shaped school, so running isn't as serious as it would be, but they have worked out a game to work on it---yelling "STOP" after letting her run, or Janey and one teacher running while the other yells stop. We are all aware how vital the lessons about eloping are.

And yet it can happen. My heart broke reading those stories. Many of them were spurred by a child's obsession, often with water. You combine a child that can get obsessed with something like no-one on earth, a parent that might have gone nights without sleep, and you have a recipe for disaster. Your eyes close sometimes when you haven't slept. Or you succumb to the temptation to take a second for yourself. You start reading that interesting article on the internet, or looking at a bird or tree while you're outside. And your child is attracted to something, and slips away. Parents and teachers of autistic kids are being asked to be superhuman. No one person can do it. That's where my post yesterday comes in. The need to respite, for support, is not so the parents can sit around eating bon-bons. Many times, while Janey is at school, I sleep. I do the laundry I can't do when I am with her, as it's in the cellar. I talk to my boys. I pay bills. All things other parents do, but things I literally can't do unless someone else is watching Janey. It's why I love school, and after-school. They save my life, and possibly Janey's life. It's also why anyone working with autistic kids deserves our utmost respect, the pay they have earned and their own respite too.

This is a bit of a rambling post. My mind doesn't stay organized when thinking about my biggest fears.

A long day with Janey

It's vacation week, and overall, Janey has been cheerful. I'm very grateful for that, but I have to admit, today was a day I was mostly alone with her all day, and I did not enjoy the day. That sounds awful to admit, but it's true. It's hard being alone all day with Janey. It's hard in a couple ways, but the biggest one is the trapped feeling. As Janey gets bigger, it's harder and harder for me to attempt taking her any place alone. She is too big for me to easily pick up, and big enough to escape my hand holding. She can and has been known to just run away, regardless of where we are. It's my nightmare. And even if that doesn't happen, she might suddenly have a tantrum. She's a two person job. Right now, Tony can still pick her up, and so he does take her alone places at times. But I do increasingly rarely. And even when we stay home, I'm trapped. If I decide to do something decadent like using the bathroom or going the few feet out to get the mail, Janey will take that opportunity to do something fun, like dump all the Lucky Charms on the floor to look for marshmellows, or pour herself soda, or take off her diaper and play with the contents of it, or something else. So she comes with me wherever I go, and she doesn't like that.

Keeping her entertained is also hard. She has limited interests, and lately, TV doesn't hold her attention all the time, which I am glad of, but it makes it harder. We do iPad, I read to her as much as she'll let me, I try to get her to draw---and all that takes about 15 minutes, it seems, and she's restless. I threw caution to the wind today and walked to the post office with her, about a half mile round trip. She stayed with me, but the sidewalk was under repair and we had to walk in the street, and I was terrified she'd bolt. She also likes to touch lovely things on the ground---old bottles left around by winos, assorted interesting trash. She was happy, though, yelling loudly and jumping about, and echoing with her trademark echolalia some comments people in the crosswalk made (nothing bad, but they were startled and stared at her like she was in a zoo)

The truth is, no matter how much progress Janey is making, it's still pretty hard. I am trying to be positive lately, but today I felt just tired. I was wishing she was a "regular" 7 year old, someone with friends, someone that could go to a vacation week camp, or enjoy a trip to the library, or the mall, or be starting to read to herself, or even just entertain herself for a second while I went to the bathroom. I was really, really wishing it. She's tired now, and crying for Tony, and that is the other part---I'm never confident she'll stay happy, and when she's not happy, everything is that much harder.

Tony has the rest of vacation week off, thankfully. I'll make it.

Defiant---the good and the bad

Yesterday after school the weather was lovely, as a lot of this winter has been. I let Janey play in the driveway for a while, after closing the gate at the end of it (we live RIGHT on a main road) and she ran around happily for a few minutes. Then, suddenly, she got the urge her father is so often struck with, for Chinese food. She came up to me and said "Chinese rice!" which is fried rice. She grabbed my hand and pulled me toward the gate. I said "No, Janey, not tonight. When Daddy gets home from his trip on Friday" And she screamed, and pulled at the gate. I held her hand and started firmly trying to direct her inside, but she pulled her hand away and said "NO! Chinese RICE!" and kept trying to open the gate, having decided I guess to just go get the rice on her own at the restaurant down the block. I finally had to pick her up, which took every ounce of strength I had, and bring her inside, and still, it took her a while to calm down.

So what's the good? I don't think Janey has ever before defied me in quite such a way. She's gotten furious when I said no, she's continued to ask for something for hours, but this felt different. It felt like she was saying NO to me, saying "I'm NOT going to do what you say" instead of just getting upset she wasn't getting what she wanted. Before, I think she's thought asking is just a way to get that person to do what you want, and when I said no, she didn't really get I was making a decision---it was more like the cosmos or whatever was just not providing what it was supposed to. But this felt like she knew I was saying no, and she realized enough that she had a will of her own and opinions of her own that were different than mine that she decided to just tell ME no. I might be over-reading into this, but something felt different, and I was actually pleased about that.

However---the bad. It was very, very hard getting Janey into the house. She's up over 50 pounds now, and I can't lift her easily at all. In a few more months, I think I won't be able to at all. If she makes up her mind she isn't going someplace I want her to go, or if she wants to go someplace I say no to, it's going to be physically impossible for me to stop her by picking her up. That's very, very scary to me. Reasoning with her is not going to work, a lot of the time. She is starting to realize that when we hold hands, it doesn't lock her hand in there. This is a stage all kids go through, I think, but most do it when they are in their early 2s (and my boys didn't do it for very long at all---they were not ever as adventurous as Janey), and at that age, you can still just pick them up. What am I going to do when I can't do that with Janey? I really have no idea. I feel like right now, we are being as careful as it's possible to be to make sure she doesn't run off or get hurt, but we will have to be even more so, and so will everyone else dealing with Janey. I can only hope that with her increased awareness of herself vs. others, she also gets some increased awareness of danger. Boy, do I hope that.