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.

True Inclusion

I've read lots of stories about inclusion classrooms that end something like this..."As I left the room, I said to the teacher 'But you told me this was an inclusion class!  I didn't see any kids in there with special needs!' and the teacher smiled and said 'But there were, and I'd challenge you to figure out who they were!'"  The point of the story always is that we have so many preconceptions about children with special needs, but in reality, they are JUST LIKE the rest of kids, and if you just put them in a classroom with typical peers, they will blend totally in!  Well, if you visited Janey's classroom, unless you are unusually clueless, you would not tell that story.  Janey doesn't blend in.  She isn't exactly like all the other kids, unless you are looking at a still photo with one of her smiling face poses.  It would only take a minute or two for anyone to figure out that yes, she's one of the special needs kids.  And that is what I consider true inclusion.

I've been thinking about this a lot the last few days, because of my happiness over how the school year is starting with Janey, and how in general her remarkable school and teachers handle inclusion.  Here's a few examples----

Last night was the curriculum night at school.  I always go to that night, and although I've never felt unwelcome, I've often left feeling sad.  This is not because of anything anyone did wrong, but just because the main line curriculum is not something Janey can access much.  The classes she's in consist of about 25 kids, of which around 4-6 are on IEPs (I don't know the exact number, because that's not my business, and I am sure there are some kids that DO blend in), so most of the class is working at a normal grade level.  I hear about all the reading and math and history and science and testing the year will bring, and I am very happy she's going to a school that teaches at the high level it does, but I am left feeling a little empty---wishing Janey was going to be learning those things too.  When Janey's teacher asked me if I was going last night to the curriculum night, I said "Um, maybe.." which she knew enough to know meant no.  And she said "Please come---we are personalizing the night"  I went, because I was intrigued, and indeed, that is just what they did.  Each parent sat at their child's desk, and each place had a decorative guide to exactly what that child's curriculum was like, personalized.  We all got a chance to read that, and then just to talk to the parents of the kids our kid sits with.  It was wonderful.  I love hearing about the other kids in Janey's class, and I love talking about Janey.  In the background, there was a slide show of pictures from that very day in class, showing what the kids were doing, and I was able to see Janey right there with the rest.   The teachers were available to answer questions, and I left feeling very, very happy.

A piece of inclusion that often gets lost in the shuffle is the regular education kids in the class.  It's very important to me that they also benefit from inclusion, and at Janey's school, I feel they do.  The extra resources that having a lot of kids with special needs around bring in benefits all kids---there are speech therapists, OTs, PTs and lots of other helpers in and out of the class, and also two teachers and an aide, and often a student teacher.  It's no coincidences that for several years in a row, the Henderson School has been the top performing school in Boston on the state testing.  But I think it's more than academic.  The kids learn to accept that there are those among us who need more help, and they learn to give it, and to feel good about themselves for giving it.  There's a new girl in Janey's class who took to her immediately, and who Janey has taken to also.  She is treating Janey like a friend---playing little games with her, chasing her, sneaking up behind her and saying "guess who?"---all that.  For a little bit, I wondered if she somehow hadn't noticed that Janey spoke very little, if she didn't see her autism and intellectual disability.  As if she had read my mind, the girl stopped me as I was leaving Janey in the room the other morning and said seriously "I've only been at this school a little while, but I know how things work.  I have a cousin like Janey"  Somehow, that filled me with an extreme happiness.  She was telling me that she liked Janey WITH Janey's needs---she was aware of them, but Janey didn't need to be "normal" to be worthy of friendship.  That is an attitude her school promotes, and it's a crucial part of true inclusion.

I often wonder how much Janey understands about herself.  Does it matter to her that she be with all kinds of kids, that she do "normal" things?  Would she be just as happy in a separate classroom?  I partly answer that by seeing her after a day of summer school, which is separate.  All reports were she had great teachers this summer, but she didn't have the spark, the joy, that a day at the Henderson gives her.  And last week, I saw how much she does get when she had some homework---very appropriate homework she could do.  When I told her it was time to do homework, and we sat down at a desk to do it, she was thrilled.  She has heard the boys talk about homework a million times, and suddenly---it was her turn!  She did it willingly and to the best of her abilities.  I think being in a classroom with regular routines---saluting the flag, reading groups, recess, homework---all the things we remember from school---is very satisfying to her.

Inclusion is not easy.  This is the 25th year the Henderson School has been inclusive, and I am sure there are still things everyone is learning.  But done right, it doesn't have to be a situation where success means you can't tell who the special needs kids are.  It can be a situation where the very fact that some of the kids have extreme special needs is a boon to everyone.

Decoding "Snuggle on Mama's Bed"

"Snuggle on Mama's bed" is the phrase Janey uses far more than any other.  She probably says it 20 or 30 times a day.  It's often the first thing she says to me after we've been apart, the last thing she says to me at night, and the first thing she says to me in the morning.  So that's why it's a little strange that it's only the past week or so I really figured out what it meant.

For years, I thought the phrase meant what you would think it would mean---that Janey wanted me to snuggle with her on my bed.  I would do so when she asked, if at all possible.  Sometimes it seemed to calm her down, sometimes not.  But oddly, she'd often ask it when we were already snuggling.  Or she'd ask it, snuggle with me for a second or two, and then jump up and go on her way.  When she did this, I'd get up too, and go about my business, only to have her come back a minute or so later and ask the same thing again.  We'd sometimes go through this for 10 rounds or more, and Janey would get very annoyed if I resisted the constant demand for what I saw as second-long snuggles.

What led me to figure it out was noticing that more and more, Janey wants physical things to be a certain way.  Tony, Freddy and I actually all noticed this separately, but didn't talk to each other about it until one day late in the summer.  Janey does a round of the house, putting things as they should be.  The door from the living room to the bedroom must always be closed.  The Wii remote that we use for Netflix must be on its back, not on its side or upside down.  The blankets on the edge of the couch must be in a certain position.  Any room that is being used in any way must have a light on.  I could go on and on.  Obviously, there's a touch of OCD there (something I am far too familiar with), but it took us a while to see as Janey doesn't seem to get upset by things out of place---she just fixes them. Or does she?

I wonder now if many, many of Janey's long crying spells have something to do with something that is not in the right place, that is out of place and can't be fixed by her.  And that is what I finally figured out about "snuggle on Mama's bed".  It doesn't mean she wants to snuggle with me.  It means she wants me on my bed.  She wants me in what she sees as the "right" place.  And she gets upset if I'm not there.  It's a little flattering, actually, that I am more important that doors or remotes.  She needs to know where to find me, if she needs me.  She doesn't like me to be unpredictable.  I'm not sure what it says about me that being on my bed is the right place for me, but OCD type thoughts don't always make any sense.

I tested this theory a couple ways.  First was just talking to Janey about it, saying "You like Mama to stay on her bed when you feel a little nervous, don't you?  That's why you ask me to snuggle on Mama's bed, to get me to be there?"  The look on her face said a huge amount---a mixture of surprise and extreme relief.  I then said "You are upset now, so I'll get on my bed for a while so I'll be there if you need me"  Janey came over to me, tapped me, went to the living room, came back in a few seconds to make sure I was there, tapped me again---over and over and over.  She stopped crying, she looked hugely relieved---we were both very happy.

However, just understanding Janey in this way doesn't really create a solution.  Obviously I can't spend every single minute on my bed (although sure, there are days I'd go for that)  And if I am alone with Janey and she is in a very upset mood, I have to be close to her to make sure she's okay---I can't be on my bed while she runs around.  But in limited cases, like when Tony is also home and she is having a fit, I am going to, at the first request to snuggle, just get on the bed and stay there for a while.  When I get up, I'll tell her.  I'll try to make that little part of her world predictable, for now.  I'm working without a map here.  I doubt there's anything in the parenting literature that tells you what to do with a minimally verbal, intellectually disabled autistic nine year old who is showing scenes of OCD.  Am I doing the wrong thing to do what she wants?  For right now, I'll risk it, partly just to show her I do understand.  And we'll go from there, playing it by ear, as life with Janey so often demands.

YesNo for iPod --- discovered in desperation!

Janey's crying was less today, but this afternoon started to return.  One thing we always worry is that Janey hurts physically someplace---that she has a headache or a stomach ache.  We were trying to ask her that, which she sometimes answers.  We've asked it by asking her "Do you need hurty medicine?" (meaning Tylenol) which she will answer.  Today, though, she was screaming so much that she couldn't answer, and I was hugely frustrated, thinking that there should be a simple way for her to just push a button to say yes or no.  I got on the app store looking for such a thing.  I looked briefly at hugely expensive speech apps, knowing I couldn't afford them and certainly couldn't learn them in a few minutes.  Then I found this app

Answers: YesNo HD

It was $3.99, and it looked very easy and like it would do what I wanted---just bring up a Yes/No screen.  I bought it in a frenzy, opened it and found the default setting was indeed just a yes/no answer.  I went back to Janey, asked her if she needed hurty medication, and showed her the screen, quickly hitting yes and no to show her how it worked.  She immediately hit the "No" button.  I then asked her a few other questions to see what she'd do, like did she want a hug, did she want bacon (which Tony was in the middle of making), etc, and she answered "yes".  I asked the hurty medicine again, and she said, again, "no".  So we had our answer!

It always feels weird to me to use software like that when Janey CAN talk.  But she can talk in certain contexts, and she also seems to have a very hard time with "no"---she answers yes or nothing at all.  I often find myself holding out two fists, labeled one "yes" as I wiggle it and then the other "no" as I wiggle it, and letting her pick a fist.  That seems to work for her.  I could still do that, but this seems like a more independent way for her to talk.

Looking at the software a little more, I saw you can make other easy choices available.  I quickly took pictures of Tony and of me, and gave her a "Mama/Daddy" choice button.  Just now, she said she wanted to cuddle.  We usually assume that is with me, but we gave her the choice and she picked Daddy, so that is what they are doing.

Janey's teacher this year and her ABA specialist are going to work on augmented communication, and I am very excited about that.  I think it might be a huge help to Janey, and something that might ease her frustration.  She is still crying today, but for about 10 minutes after first using the Yes/No, she was quiet and happy.  I'm going to try to add some more choices soon.  Even if it only helps for little bits of time, that's better than anything I tried yesterday.

Crying----Why? What To Do?

Janey had a great day at school on Friday.  Today, she went to the "Treat House", the respite house, and went apple picking.  She was cheerful when we dropped her off and when Tony picked her up, and he didn't hear any reports that she was upset there.  However, a few minutes after getting in the car, she started to cry.  She cried all the way home, and kept right on crying.  She cried, screamed and cried, from 4 - 6:30.  As of this writing, she's falling sleep.

I wish I could truly describe what spells like this are like to someone who hasn't seen one.  It's hysterical crying, the crying of despair.  She hears what we say, based on an occasional echolalia word, but nothing we say helps.  Nothing we do helps.  We have absolutely no way of knowing what's wrong.  She doesn't say.  We can guess, and today's guess was that she was tired, as her sleep has been awful.  Last night, she was up from about 1 am on.  Not crying, but awake.  For much of that time, she lay next to me, so wired that she didn't even really rest her head on the pillow.  And then she goes off, apple picks, comes home, and of course she is tired.  But she doesn't sleep, and that doesn't always cause crying.  Is she hungry?  We offer her food, she might eat a bite or two, but then she continues the crying.  Her face is red, tears stream down.  She is desperately unhappy, and I can't help.  No-one can help.

At one point Tony took Janey in the back room to give me a mental break from the crying.  Janey screamed for me, and Tony said she needed to calm down first.  She got control for a second, said "I feel better" and he let her come to me.  Within seconds of leaving the back room, she was screaming and crying again.

I think the source of her sadness is internal.  But she doesn't have the words to explain that to us, or if it's not internal, to explain what makes her sad.  The combination of retardation and autism and probably a mood disorder leads to a situation without a solution, or one that I can find.

I am glad school is happier for her, but of course that is also hard for me.  I can't recreate school at home.  Home should be a happy place for her, but I feel like home is where she goes to fall apart.

Lately I am feeling out of ideas.  The crying, the lack of sleep---it's worn me down.  I am so happy school has started, but I feel guilty in that happiness, because I am sure it's almost more about just getting a break from Janey than being glad she's learning.

What do you do, when you've run out of ideas?  I don't know.  I've read some scary, awful ways people have dealt with that feeling lately.  Don't worry.  I would not ever, ever go there. But more and more, I am starting to see that long term, Janey might need more help than we can give her, as a family.  Getting that help is not easy.  It's very, very hard.  But so is the way things are right now.   I've always gone with hope as my answer---hope that tomorrow, Janey will be happier, that she'll be back to one of the delightful stages where life with her is wonderful.  Tonight, I'm having trouble drumming up that hope.  I'm down to hoping FOR hope to come back, tomorrow or soon.

First Day of Third Grade

The day you think will never actually arrive arrived yesterday---the first day of school.  I always wonder how much Janey realizes what the day is going to bring.  I talked it up for a few days, and she would repeat that it was going to be the first day, but I think she still is always a little surprised when we show up for school.  There's the confusion of summertime school, and there's the confusion of I think her not being totally aware of what tomorrow means, or even today.  Whatever it was, Janey seemed a little stunned to actually be at school at first yesterday.  The first day always features parents and kids gathering at the big inner courtyard her school has.  I figured out it was my 14th first day of school at the Henderson Inclusion School, so I have the routine pretty down!  It's a great feeling, that first day, with excited and nervous kids and parents.  Janey was overwhelmed at first, but then started her running around.  Then she heard the music, being played by part of the arts education team at the school, and she was drawn to it to dance.  I noticed that not another kid in the whole school was over next to the speaker dancing.  Any music at all draws her in, from loud banging stuff to the subtle background music at stores.  The music seemed to settle her down, and she looked happy for the first time in the morning.

And then, her teacher for this year spotted her, Ms. Gailunas, or, as we sometimes call her, Amy.  Amy has known Janey since before she was born.  She is the first person ever I discussed my thoughts with about Janey possibly being autistic.  She is the teacher I credit in a huge way with starting William on the path he is on, turning around his school career and helping him in so many, many ways.  She gave Freddy a delightful 2nd grade year.  And now, she is teaching Janey!  And she is EXCITED to do so.  That's what kept hitting me yesterday.  With how tough the summer was at a lot of points, I'd accept a teacher just doing her job, a school just doing what they are required to do to teach Janey, to have her there so we get a break.  But with the Henderson School, I get so much more.  I get teachers like Amy, excited to see what they can get Janey to do.  I get a whole staff of people that know Janey, many of who knew her from the start of my pregnancy with her, and who love her and are interested in her.  I get school and after school that gives Janey so much more than I could ever give her at home.  I am supremely lucky with her school.

And so Tony and I left without nervousness, knowing Janey was in very good hands.  We went out to lunch, and then we came home and collapsed into a nap.  It was a long summer, and an especially long last few weeks, but as September has always felt to me, the day felt like hope and new beginnings.

"They grow up so fast!"...or not

William has been at college for a week now.  I miss him more than I even thought I would.  It's a strange feeling to have someone you love around every single day for almost 19 years, and then, suddenly, they are gone, and it feels like, well, that's that.  I know he'll be home for vacations and summers, hopefully, but he is the opposite of homesick.  He loves college extremely much, based on the few lines I've heard from him.  And I am very, very glad.  That is how it should be.  Tonight, though, I was feeling sappy and thinking things like "it's so true what they say---they grow up so fast!"  I was thinking of posting something like that for my status on Facebook.  But then I thought about it.  They don't all grow up so fast.

Janey is growing physically, of course.  She is getting older.  She will be a teenager in 4 short years.  But she grows in other ways very, very slowly.  Many things seem at a standstill often.  Her toilet training is improving, but over years, not months or days.  Her speech in many ways ebbs and flows, but doesn't really get better.  She can do things she couldn't a few years ago, but still, in many ways, she's a toddler mentally and developmentally.

Tonight when Janey was crying, I got her to sit on my lap.  I sang to her, smoothed down her hair, snuggled her.  It felt a lot like what you do with a baby.  It was wonderful.  It was a rare time I was almost glad I still have a little, little one.  That feels like the wrong thing to think.  It's of course not that I don't want her to mature.  If she was breaking away from me, if she was starting the road to someday being like William, gone away and glad to be so, I would be thrilled, because that is how the pattern of life goes, usually.  But I don't have a choice about it, and sometimes, with accepting that comes a kind of peace, a kind of happiness that in many ways, I have a child who will most likely be a child forever.

There are many of us out there, I realize more each year.  There are a lot of parents who have a child for life.  They watch other kids breaking away, growing up, moving out, getting married, having grandchildren for them.  They often have other kids doing just those things.  They watch with a mixture of feelings.  There is jealousy, yes.  I think most of us would admit to some of that.  There is envy, and there is astonishment, that for so many children, becoming an adult happens so easily, seemingly without effort.  But there also comes, with time, a feeling that we are living a separate but not inferior type of life.  Our kids are not on the same tenure track.  They are living a parallel life path, one that doesn't have a childhood expiration date.  And over the years, slowly, that becomes its own reality.  I am not there yet.  I still wish, sometimes, or maybe a lot of times, that Janey was following the more typical path.  But tonight, as I miss my oldest, I treasure my youngest, and I am glad, for flashes of moments, that she does not grow up so fast.