"I need help"

It's rare Janey starts saying anything new.  Most of her phrases and words have been with her for years.  When she uses a word or phrase we haven't heard before, it's generally something she heard in a song or on a TV show, and it's not usually used in context.  But the last month or so, we are hearing her say "I need help" all the time.

I'm pretty sure she learned the "I need help" phrase at school.  We've all asked her at home if she needs help, but that would generally translate to her saying "Do you need help?", not using the first person.

It's great to hear her ask for help!  The other day, I was turned the other direction and she said it, and I said "What do you need help with?" and she said "I want my cheese!"  I turned around and she had the cheese block we always have on hand in her hands.  It was an actual conversation, something very rare with Janey, and wonderful to have.

However, as is often the case with Janey, she has started over-generalizing the phrase.  Like "please", she is using it hoping it's literally a magic thing to say.  If it's the middle of the night and we say she can't watch TV, she says "I need help!  TV on!" although she's quite capable of turning on the TV herself, and she's asking for permission, not help.  If we say no to anything, her new first answer is often "I need help!"  It's better than a scream, but a scream comes next if it doesn't work.

I've read about overgeneralizing in speech.  It's a common phase for toddlers to go through, at around age 2.  It makes sense.  Janey in most ways operates about like a 2 year old.  But lately, I am seeing signs of her slow progression to new stages.  One big thing I've been noticing is her experimenting with the world around her in ways I haven't seen before.  We got pool noodle type things to put along the edges of her bed, because we kept banging our shins on it.  She took one off, and then used it above her head to try to touch the ceiling.  We have very high ceilings, and she didn't quite succeed, but it was the kind of play I've almost never seen her do.  A few days ago, she reached over and rolled down the car window (yes, we still have old style windows in the car!)  I had no idea she even knew how to do that, or that if she did, she would be motivated enough to try it.  It's not a great thing to have her doing, as she has several times tossed things out open car windows, but it was cool to see!

I get excited about Janey's progress.  I think it can be easy to lose that excitement that we would normally feel about a child doing new things when the child in question is getting ever closer to no longer really being a child.  As the  years go on, though, I do very little comparing of Janey to "normal".  She is on a whole separate path.  Part of the not comparing is because if I did compare, I would probably fall into despair.  That's what can happen sometimes when I read news or magazine articles that talk about a child with "delays" or with "significant cognitive problems" or so on, and then read about what that child can do and think "THAT'S a delay? I don't even know WHAT they would call Janey's abilities!"  But the other part of it is learning to delight in Janey as she is, to rejoice in every "I need help" or reach for the ceiling or rolled down window.  Tony and I have said so many times this summer that if we could have seen how Janey is doing lately as compared to a few years ago, we'd be very happy, and as I knock frantically on wood, I will close with that.

The long recovery, the school visit, and loneliness at the edge of the spectrum

Janey is gradually, gradually getting better.  She spends less of her day in bed now, and walks much less hunched over.  She is starting to eat a little bit better, and we don't worry all day quite as much about her drinking enough.  But it's SLOW.  I'm very glad the surgeon warned us it would be, or we would be much more worried.

Yesterday, we went to visit Janey's classroom, to say goodbye to her teacher and pick up her stuff.  It was the last full day of the school year, although of course Janey's school year ended abruptly a month ago.  Janey was very happy to see everyone!  It took her a minute to take in that we were actually in her room, but once she did, she was all smiles.  It was wonderful to see.  Wonderful both ways---to see Janey happy, and to see her teacher and all the therapists and staff and aides that saw her so engaged with her, so happy to see her.  They all seemed to have a special thing they did with her, some kind of high five or dance or saying.  It was truly special to see.  We will miss Janey's teacher, Miss Jenn.  She was terrific with Janey, and so caring.  It was not an easy year for Janey, and she was with us every step of the way.

One thing that was interesting was how little attention Janey paid to the other kids.  They were happy to see her, and many of them ran over to hug her.  They had made her cards, which were great (and which made me see how Janey seems like the only kid in her class that can't draw or write)  She seemed to barely notice them.  I wonder if this is because many of them seem to operate at a lot higher level than her, or if it's just how Janey is.

Later yesterday, we visited with a woman and her daughter who we'd met because Freddy is friends with a son his age in the family.  The daughter is on the spectrum, although on the far other end from Janey.  Janey again paid not much attention to the girl.

Some day, I'd like to do a tour and meet in person many of the people I've met through this blog, to talk with them (wouldn't that be wonderful!) and to meet their daughters.  I feel like I've never met another family in person with a daughter like Janey.  It's a bit of a lonely feeling, that yesterday pounded home to me.  The autistic spectrum is very wide, and the edges of it are not as populated, especially's Janey's end, I am finding.

Another feeling hit me yesterday, a bit more positive one.  I realized how when I'm not around other kids, Janey just seems like Janey.  I don't spend a lot of time comparing her to where she "should" be.  It doesn't seem especially strange to me that she doesn't talk much, or that she screams a lot, or that she isn't toilet trained, that she can't read or write or draw.  Of course, I wish she could do those things, but that's not Janey.  Unless I'm face to face with others that can do those things, even though they have the same diagnosis as Janey, it just seems like---well, Janey is Janey.  I guess that's autism acceptance, in a way.  It doesn't mean that I don't feel sad that Janey's life is and will be very limited by what she can't do, but I don't spend a lot of time thinking how different she is from others.

The part that does make me angry is how there is so much less help for kids like Janey than there is for kids with less severe autism.  There is nothing for Janey except school, nothing.  No camps, no respite, no social skills groups, no friends, no lessons, nothing.  There is nothing.  That has been confirmed by talking with three social workers specializing in kids like Janey in the last month.  And it's why I am so grateful for her school.  I felt at home there yesterday---not quite as at home as I used to at her old school, but at home.  I felt like it was a place where Janey was accepted and loved. And there aren't that many places like that.  So thank you, Boston Public Schools.  You don't get enough love, but for our family, you've been wonderful.

The Autism School Bus

For many years, I didn't use the school buses for my kids. There were lots of reasons---I enjoyed seeing them at school in the morning and afternoon, the bus stops for "regular ed" kids were often far, far from our house, my older son's school for years was within walking distance---but most of all, I didn't like the thought of them being on a school bus.  I saw school buses full of kids around the city, and they often looked crazy, full of kids that weren't staying in their seats, were sometimes hitting each other, were screaming things out the windows---it just didn't look safe.  And I spent many hours of my own childhood on buses.  We had one wonderful bus driver, but others not so wonderful.  Going to high school, the back of the bus was filled with kids smoking, and not just cigarettes.  The roads were often icy or hazardous, and the time on the bus was at best boring, at worst a hothouse of teasing and bullying and physical fights.  So I decided since I was home, I'd just drive the kids.  And that worked.

But when Janey recently changed schools, I decided to give the bus a try.  Part of that was just burn-out.  For 14 years, I had driven twice daily to her school (which the boys went to before her).  It was a drive that took between 20 minutes and an hour, each way, full of crazy turns and traffic and roads with potholes.  Janey is eligible for door to door transportation, so I could get a bus to come right to our house and get her.  And I thought the change of schools would be a good time to make the change of transportation.

Putting her on the bus this morning, I reflected on how amazingly well the change to the bus has gone.  The drivers and aides seem great---professional, calm, nice.  The bus shows up exactly on time, and Janey gets on happily.  I don't have to drive.  However, I think one of the big differences is the kids themselves.

Janey's bus is all kids from the autism program.  And maybe it's not politically correct to say, but I'll say it anyway---I'd rather have Janey ride on a bus with all other autism kids than "typical" kids any day.  Autism seems to lend itself to bus riding.  Everyone has an assigned seat, and they sit there, happy in the routine.  Nobody teases or bullies or hits.  Everyone looks happy to see Janey get on---she is part of the routine now, and I'm sure many of the kids have the sequence of stops memorized, and like to see each one play out.  Nobody is smirking or practicing their latest insult or just being a jerk.  It isn't in the nature of the kids, the boys (all boys except Janey)  Another thing I'm not supposed to say, but again, I will---most all of them have that look that you often see in autistic kids---that beautiful angelic kind of look of innocence.

I'm not living in a dream world here.  I'm sure there are meltdowns on the bus, I'm sure every one of those kids at times is as tough as Janey is at times.  But for the moment when I'm putting her on the bus, I think sometime I don't usually think.  I feel, for a fleeting moment, completely happy with autism.  I am not turning into a "sparkly hearts filled with magic" autism mother.  Life's realities are not going to allow that.  But seeing those kids, seeing Janey sit down in her seat, knowing that she is surrounded by other children that lack the meanness that is a part of almost all the rest of us, I feel at peace with autism.

Summertime School

Janey is now going to what we call Summertime School, and what is officially called Extended School Year, or ESY. I was reading a little about the laws pertaining to ESY. It's required to be offered to kids at substantial risk of regressing during the summer, which is certainly the case with Janey. We are lucky in Boston that it's offered for 6 weeks, 5 days a week, 5 hours a day. The law doesn't require that much, and I know from talking to people in other parts of the country that some places have only a few weeks of it. It's going well so far. I like Janey's teacher, and she also gets to see her ABA specialist, the same one from the school year, and a few kids from her school are also in her class. Janey is eager to go each day. I think she truly needs the structure. And I know I need the break. The thought of a summer without some program, as was the case until last year, is very hard to imagine.

Although I haven't seen Janey in her classroom environment, it's interesting to see the kids when I drop her off or pick her up. All the kids in her program (as far as I know) are autistic. It's like seeing a world where autism is the norm. And it's making me realize that I think Janey is tougher than most kids with autism, at least in terms of being emotional and moody. The first day, it took a long time to get all the buses there, and the kids had to wait outside a long time. Janey was actually very good that day, but I was figuring a lot of kids would have a hard time, and I didn't really see that. Most were quiet, most didn't seem to answer when asked questions, but I heard only a few crying. So far, I haven't seen a lot of kids trying to run away, or making loud strange noises, or yelling things, all things that Janey does regularly. That's not to say they don't, but I thought seeing around a 100 autistic kids at once, you'd see a lot of it, and I haven't. That was a little eye-opening. There is hardly ever a moment when we can say Janey is truly being relaxed and even-tempered. She is often happy, but a loud happy, she is often sad, and a loud sad. Sometimes she does zone out, but not long enough so you can relax much.

Aside from summer school, our summer has been okay. We are keeping Janey busy, and so keeping ourselves sane. Regular school starts in about 2 months. Not that I'm counting.