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Friday, May 30, 2014

How Janey's brothers see her

Janey is extremely lucky to have two amazing brothers.  William is 10 years older than her, and Freddy is 7 years older (to the day!)  I often have thought how much harder our lives would be if Janey was our first or only child.  I can't tell you what a help the boys have been over the years.  Often it's just the little things, like when I have to run down and change laundry or check the mail---countless times, I've said "Can you keep an eye on Janey for a minute?" and they have stepped up to the plate.  As they've gotten older, if Tony and I want to get out and they are available, they are the only babysitters we use.  We do that very little, partly because they are busy and partly because we can't afford a lot of going out.  When we do have them babysit, we generally pay them, because watching her is certainly a payable job, but they often offer to watch her without pay for special occasions.  They joke with her, play with her, treat her in a brotherly way that is so important for her.  They are great boys.

Over the past few years, on several occasions, each boy has said the same thing to me separately.  They have both told me they truly feel Janey has normal or better intelligence---that for whatever reason, talking and communicating is hard for her, but that they very strongly feel that inside, she is bright.  I take their opinions on this very seriously.  They are not saying it from any position of wistful thinking or from lack of information.  They know Janey completely.  They see the full extent of what she is like---the screaming, the lack of academic progress, the limited talking---all of it.  But through it all, they see something else.  They have both seen amazing things she has done, those once a year type odd moments when she shows a glimpse of what she can do.  They have also seen the day to day demonstrations of her strong sides.  They have seen her learn songs instantly and sing them back, they have seen her figure out complex baffles we have put on things we don't want her to touch, they have watched her easily manipulate the computer and the TV.  And they also see the intangibles---just the way she can look at you, the way she picks up on the mood of a room, the way she subtly knows how to get what she needs from people.

I know a lot of people think I should have more faith that Janey is of normal intelligence.  I know very well that intelligence is not an easily measured thing, and that there are lots of kinds of intelligence, and that autistic kids don't take well to testing.  But I also fiercely need to live in reality.  Janey is nine.  She rarely talks in full sentences (except for echolalia).  She is not toilet trained.  She can write her first name, but nothing else consistently.  If she can read, she generally hides it well.  I have never seen her do even very basic math skills.  She rarely responds to questions.  By most any measure, she is intellectually disabled.  But IS she?  I don't know.  But I know that having her brothers feel she isn't is one of the factors I most strongly am influenced by.

Here's some pictures of Janey with her brothers, just being happy in their presence.  She's a lucky girl to have them, and I am a lucky mother to have all three.

Saturday, May 24, 2014

Talking back to "I don't know how you do it"

Over the years, the phrase "I don't know how you do it!" has come up over and over in autism writing as probably the phrase autism parents most dislike hearing.  I admit at times it's bothered me a bit too, but lately, I've come to peace with it. It's struck me it's all in how you take hearing it, in what you hear when you hear it.   What do I mean by that?  Well...

Take it as a compliment   When people say the phrase, reword it in your mind as "Wow---you handled that meltdown/screaming/tantrum/obsession/biting/what have you  well!"  Assume the speaker is truly awed by your ability to deftly navigate the waters of autism.

Take it as a question  Think of it worded as "HOW do you do it?  Imagine that the speaker is truly wondering how you cope.  Use it as an opportunity for education.  Fill them in on some strategies you use, what techniques work to calm your child, what respite type services have been helpful, what educational strategies have worked best.  Turn them into an advocate by informing them what actually helps and works.

Take it as a confession  I think a lot of parents feel, secretly, that if they had had a child with severe special needs, they simply wouldn't have been able to deal with it---that they would have done whatever people do when they simply can't take it.  I often let people know that I felt that way too, before actually being faced with special needs parenting.  We learn as we go.  Despite lovely fables about parents being chosen from above to have a very special child, the truth is none of us are prepared for our special kids.  It's a tough on the job training, but I tell people they too would have done just fine if they had been "chosen".

Take it as an offer of help  This one can be fun.  Say something like "You know, I don't know how I do it either.  Thanks for noticing.  Yes, I'd LOVE your help.  When can you babysit?"  Seriously, the phrase can be an opening to admit sometimes we CAN'T do it alone, and we can use any help we can get.

Take it as shock  When people are faced with a situation they haven't seen before, one that seems overwhelming to them, they don't always know how to respond.  I've most often heard the phrase after Janey has severely melted down, has pulled out all her tricks like ear-piercing screaming and arm biting.  People just don't know what to say.  I think the phrase often is almost involuntary---a reaction to seeing behavior they have never seen before.

Take it as better than the alternative  What if people said instead "I could do that much better than you.  I can certainly see how you do it, because it looks very easy.  I don't know what the big deal with autism is.  It's a piece of cake"  I don't think most of us would like that much.  In a way, hearing the phrase is a badge of honor.  We are doing something tough, and we are being recognized for it.

Take it as a statement of love, for you and your child  The truth is, most times I've heard "I don't know how you do it", it was coming from someone who cares about me.  They might mean any of the meanings here, but they are saying it because they care.  Sometimes it's not the words that really matter, but the thought behind them, and sometimes, as with our kids, we have to read more than plain words to know what is being said.  Sometimes, we can answer without words too---just send back a shrug, a smile, a hug, a laugh.

None of us know how we do it.  We are like cartoon characters that walk off a cliff.  As long as we don't look down, we just keep going.  We might be defying the laws of physics, but we are doing it, one way or another.

Thursday, May 22, 2014

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.

Monday, May 19, 2014

Update Notes

Janey has been at her new school for about two weeks now.  That's far too early to really draw any conclusions, but I think mostly, overall, it's been a good transition.  Or at least much better than I had feared.  Janey is taking the bus quite readily, which alone makes my day a lot easier, and I get some good reports.  Today's report wasn't quite as good---they get a paper which has a circled happy or sad face saying "Today I had a.. (either Good Day or Hard Time), and today, Hard Time was circled, and it said Janey did a great job at recess but had a hard time at working, at lunch and during iPads.  Several other day's reports have mentioned a hard time working, but she excels at recess!  I hope as she settles into the routine, she will work more readily.

At home, things have been tough.  Janey's good spell, which was in full force when she started the new school, is now certainly over.  She is coming home and screaming---screaming at full intensity.  Even Freddy, who stays calmer than almost any of us, was shaken a few nights by how extreme the screaming was.  She does seem to get over it more quickly than at some times in the past, but it comes back often.  We are trying to feed her the minute she comes in the door, and to make bedtime earlier, as I think she comes home tired and hungry.  The screaming also gets triggered lately by ANY television or videos.  Janey seems frustrated by not quite being able to control the TV---it's too complicated with the switches and modes to switch between Netflix, Amazon and broadcast and even old fashioned VHS.  She is happier usually with YouTube, which she seems to be able to navigate more easily.

This weekend, Tony witnessed a bit of a breakthrough.  He came over and noticed Janey had put a long string of "k"s in the search box for YouTube.  He asked her what she wanted to see, and she said "Kipper!"  I do think she was trying to type Kipper.  She did it again yesterday.  It was exciting for us to see her making that kind of association between a word sound and a letter.

I think I had a hope, somewhere in my mind, the part of my mind that isn't terribly realistic, the part that should have learned better by now, that since Janey switched to the new school during such a great mood stretch, she would stay happy for good.  I wouldn't have said that, if anyone asked, but there was some kind of hope, some kind of feeling that maybe she was outgrowing everything tough.  The screaming lately, combined with arm biting and some crying, seem hard to take.  They are always hard to take, but somehow they are harder when I let myself hope, even almost subconsciously, that they are gone.  I know people sometimes see me as a pessimist, because I don't get overly excited when Janey is doing very well.  But the truth is, I'm much more of a hopeless optimist than I let on.  I have to push back those natural optimist feelings, because the fall back to reality is so very hard.

However, there is much good lately.  I remain hopeful we made the move to the new school at the right time---not too early and not too late.  I am hopeful that Janey will start learning more.  I am hopeful that we will continue to gradually understand her screaming and crying better, and respond to it better.  I am hopeful that she will be happier as the weeks and months and years go by.  We are so lucky to have so many people sharing that hope, and working to make it a reality.

Sunday, May 11, 2014

The Mother's Day Card They Don't Make

If you stroll the aisles of your local card shop in search of a Mother's Day card, you will find almost anything you need.  My husband actually gave me a card this year from our cats.  Like that card, many of the cards are made to speak for kids that don't talk, or who aren't likely to pick out a card---which, truth be told, are most kids under the age of 20 or so.  Kids aren't extra known for planning ahead to make Mother's Day special.  That's more the work of husbands or teachers, and I appreciate all the work both those categories do to make sure I get some Mother's Day wishes.  However, the card that I've never found is one to give to the mother in your life that has a child with autism---a very specific card from our specifically special kids.  Here's some of what it would say, if it existed....

"Thank you for all the nights you stayed awake when everything in you wanted to sleep.  I don't know why I sometimes wake in the night, but you are there for me when I do."

"Thank you for changing diapers and pull-ups, and occasionally cleaning up from what happens when they aren't changed quickly enough.  Thank you for understanding that I'll be trained when I'm developmentally ready, not when my age says I should be"

"Thank you for finding your inner tiger to speak up for me when I can't.  Thank you for overcoming your fears and being an advocate for me"

"Thank you for focusing in on me when I am melting down in public, and ignoring the stares around me.  Thank you for finding the strength to keep taking me out"

"Thank you for having the courage to follow your instinct as to what will help me best, and thank you for having the flexibility to change course when what you thought would work isn't"

"Thank you for taking joy in my accomplishments.  Thank you for realizing that a triumph is a triumph, no matter what age it occurs at"

"Thank you for finding a way to communicate with me, however you can.  Thank you for knowing that talking in a conventional way isn't the only right kind of communication"

"Thank you for enduring my tantrums, my meltdowns, my crying, my manic laughter, my rituals.  Thank you for understanding I am doing the best I can"

"Thank you for seeing all the ways I am amazing.  Thank you for secretly thinking, as almost every mother thinks of almost every child, that I am one of of a kind, special in a way that no other child is"

"Thank you, most of all, for loving me---loving me with a love that is fierce and all-consuming and never-ending.  Thank you for being my mother"

And my own voice here---thank you to all the mothers of autistic children everywhere.  You are my sisters.  You are my heroes.  You are my strength.  You are amazing.  Thank you.

Saturday, May 10, 2014

Group hug end to a great week

Janey's new school has a half day on Fridays.  For now, I am going to take her to her old school for the second half of that day.  She got home on the bus about 12:45, and off we went.  I must say---one thing I don't miss AT ALL is the drive!  I got very used to it over the years, but it only took a week of the bus for me to get NOT used to it!  But it was always worth it to arrive at our destination, and Friday was no exception.  Janey did look confused at first when she saw where we were---like she was thinking "Hey!  I am going to the new school now!  Why are we here at the old school?" but it only took her a minute to get very happy she was there.  We went down to her old classroom, where her classmates were waiting to see her.

And then---a movie moment.  One of those moments that you can't script, one that will stay in my mind forever and ever.  Almost every kid in Janey's old class got up from their seats and ran over and hugged Janey.  It was a huge, amazing group hug.  Many kids were saying "Janey!  We miss you!"  Janey had a second of looking overwhelmed, and then she smiled---a calm, happy smile, like she was just getting her due!  Wow.  That was wonderful.

Michelle, Janey's ABA therapist who works with her in her new school and also did at her old school (and still works with other kids there) told me the kids ask about Janey every day and want to see pictures and hear about what she is doing.  That's great to hear.  It was also great to hear all she had to tell me about the new school---stories like how Janey noticed the para in the room had a pickle in her lunch, and started asking every day for a pickle, so now the para brings her one too, how wonderful the gym teachers are and how much Janey loves gym, how they work on life skills like brushing hair and teeth (several days I noticed Janey came home with her hair more skillfully done that I did it in the morning), how another girl in the class sometimes looks to Janey to see what she is doing, and then does what she does (it was great thinking of Janey maybe being a bit of a leader like that!)---so many good stories.  And Janey, the little sneak, is evidently using the POTTY at school---something she won't do at home and wouldn't do at her old school.  I don't think she realizes we all communicate!

Last week was really a terrific week.  Janey went happily on the bus like a pro, I got almost all good reports, we had the triumphant return with the hug---it was terrific.  This weekend is seeing a return to some cranky behaviors, and some poor sleeping, which I hope is just the weekend change of routine and not the start of a tougher spell, but we'll always have last week!

Thanks to all of you for your support, here and on my Facebook page.  In my extreme nervousness about how all this would go, it was a lifesaver to have a place to post updates and share my happiness and concerns.  It amazes me every day that there are people out there all over the country and world that care about Janey and our family.  Please know how much it means to me.

Wednesday, May 7, 2014

Holding Our Breath, Knocking On Wood

I've been waiting a few days to post an update on how it's going with Janey's move to the new school.  I have a huge fear of jinxes---I'm a Red Sox fan, and I grew up with parents who believed very strongly that if you spoke about good fortune, it was absolutely necessary to knock on wood.  So I am knocking on wood non-stop while writing this.

How is it going?  It's going, so far, amazingly, astonishingly well!  It's a smoother transition than I think anyone could have dreamed of.  I am getting great reports from Janey's new school from her ABA therapist, who also worked with her at her old school.  I haven't gotten any desperate calls about her behavior.  She comes home tired and a little weepy, but that's after a 10 hour day!  She is sleeping quite well, and she is taking the bus like she's taken it her whole life.

The bus alone is something that has given me respite beyond what I ever dreamed.  For 14 years, I drove one child or two every day to the Henderson School.  It was basically a 20-40 minute drive each way, through city streets.  The drive got to be automatic, and I didn't feel like I really minded it at all.  I listened to music and talked with the boys or tried to talk to Janey.  But it took up a big chuck of day, and any Boston driving is stressful.  Now, before 7 am, I go out my own front door and stand there, and a bus comes to get Janey.  She hops on willingly, and I don't see her again until about 5 pm, when the bus brings her home.  It feels like cheating---it feels unbelievably easy.

The morning, I had one of those moments where I was suddenly taken back through the years to my own childhood.  As we walked to wait for the bus, the way the air felt or the light looked took me to a moment when I was probably Janey's age, waiting for the school bus in front of my own home.  There are not a lot of moments of Janey's life that feel like they are similar to my childhood.  I grew up in rural Maine, the older of two girls, Janey is growing up in urban Boston, the much younger sister with two older brothers.  She is autistic, I wasn't.  I lived in a world of books and friends and the ocean, she lives with videos and parents and the small urban backyard.  But at that moment, I had a strange feeling that the moment was exactly mirroring one I'd lived before---a deja vu moment via her.  It gave me a feeling of connection to her that was very special.

So---we are holding our breath.  I think some people might wonder why we aren't more relieved, more relaxed and happy that things are going so well.  We ARE happy, but we also know that with Janey, things can and often do change on a dime.  She is cyclical, and we made the change during a very good point in the cycle.  Of course I always hope the cycle will stop moving---that this will be how it is forever.  But I know that's probably not the case.  When the tough times come again, how will it go then?  Will Janey scream and refuse to get on the bus?  Will she cry all day at school, and bite and scratch herself?  Will she stay awake all night and be manic with laughter all day?  I hope not.  I very much hope not.  And if she does, I hope that being in a program completely designed for autistic kids will help.  She couldn't possibly have been loved more at her old school, but maybe she needed more than love---maybe she needed a program designed especially in every way for children with autism.  We will see.

So, for now, so far, so good.  A huge thank you to everyone who has made this past week better than we ever imagined it to be.