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Tuesday, November 14, 2017

Sneakers with a skirt

This morning, I put Janey in a skirt.  As I put on her sneakers with the skirt, I had one of those crystal clear flashbacks.  I was in 7th grade, like Janey, and I had worn a dress to school.  With it, I wore sneakers, Keds kind of sneakers that were floral.  At recess, a bunch of girls snickered, and one said to me in the classic "I'll going to tell you the truth even if it hurts" type way, "You really aren't supposed to wear sneakers with a dress or skirt.  I think they look fine, but other people think it looks really dumb"  I hadn't thought of that for many years.  It wasn't any huge deal---it was the 7th grade type of girl stuff, which I am sure I dished out as well as took---but it stopped me short for a minute as I recalled it.

In many ways, Janey's world and the one I lived at her age don't have many interacting points.  She doesn't live a life which is in any way at all like most 13 year olds in 7th grade.  That makes me sad, often, but I don't think it makes her sad.  The last year or so, most of the time she's seemed pretty happy with her life.  We've fallen into a routine that works for her.  She knows the steps to get ready in the morning for school, she gets eagerly on the bus, she comes home and we go to get a snack at the store, she watches some TV, Daddy gets home, we eat supper, Janey and Daddy go for a car ride, they get home, we get ready for bed, she goes to sleep.  That's her days.  On the weekend, more TV, more car rides, more watching Daddy cook, more of the same.

Janey doesn't know you aren't supposed to wear sneakers with a dress.  I guess I didn't either, but she's not going to be schooled in it.  She doesn't care.  She's not going to have many of the small moments of hurt and sadness that the teenage years bring.  She's not going to hear the news and fear from it, not going to have the arching pain of a first crush, not going to have papers or reports or projects due on a deadline, not going to worry about test grades, not going to suffer the lingering sadness of broken friendships.  There is much she's not going to feel, and I have to say---that's not all bad.  When I say I wish she could feel those things, there is part of me that is glad she won't.  Life, typical life, everyday life, has a lot of pain.  

Is it okay that I sometimes rejoice in Janey exactly how she is, that I rejoice in the parts of her that are deeply connected with the autism?  Am I supposed to only feel happy when she is able to simulate normal?  Can I feel happy that she jumps up and down and screams with joy that we say yes to McDonalds?  Can I get teary-eyed at her beauty as she wears the clothes I picked for her, clothes that might not be the style for her age, clothes that are a mother's vision of how I want her to look?  Can I be glad she will always love Tony and me with an innocence that is non-critical, that never tackles the complicated tensions that arise as a child's relationship with parents changes as the child becomes an adult?  Can I look at her, waiting eagerly for the bus, in her skirt and sneakers, with her hair done inexpertly by me, and feel joy in exactly who she is?

I hope I can.  


Wednesday, November 1, 2017

Will she enjoy it? Will it benefit her?

Yesterday, on Halloween, I found myself desperately wanting to take Janey trick-or-treating.  I loved Halloween as a kid.  It was a day where everything was turned on its side, where you could go to people's houses and knock and get candy.  I loved the whole process, especially coming home with a big bag of candy and sorting it out and looking it over.  When the boys were younger, I adored taking them out on Halloween.  I read a few days ago about a local college having something called "truck or treat", where a lot of cars park and you can go from car to car trick-or-treating, and I made plans in my head to take Janey.

Yours truly, with my sister and father, on a long ago Halloween
However, we didn't go.  Janey is a very early to bed girl, and she was very tired by the time it was dark.  She was also very engaged in watching "Mickey Mouse Clubhouse", as we recently got new channels on the TV.  I struggled with myself---should I push for it?  Should I take her?

When trying to decide, I used a few questions that I've recently started to apply when deciding what activities to do with Janey.  Will she enjoy it?  Will it benefit her?

Well, she might enjoy trick-or-treating a little, but at that particular time, no.  She really doesn't get the point of it, she was tired, and when I asked her (probably over and over) she showed no interest.  She's very capable to letting us know when she wants to do something, and she just didn't want to.

As for a benefit, well, no. Chocolate is the one food we don't give her, and going someplace to get a bag of candy that most certainly would include chocolate, which we'd have to fight to keep her from eating---no.  It could be argued that she might pick up some social skills, but it's a hugely isolated set.  Most of the time, you can't go around to people's houses or cars and say "trick or treat" and then get candy.  So any argument that it would benefit her was pretty weak.

When I started applying the questions to activities, it opened my eyes.  There's a lot I'd like to do with Janey, or like to have her get to do, which frankly are things that I want her to do, not things that will give her enjoyment or benefit her.  This past spring, we tried Special Olympics for a bit.  It might be great for some kids, but for Janey?  No.  She had no interest in it.  She is not competitive, she didn't interact with other people there, she didn't get exercise from it as she wouldn't readily participate.  It was nice to get outdoors, but we could do that any time and place.  I realized it was ME who wanted her to be in it, for reasons that had little to do with Janey. 

Janey very happy, headed to the store.
I'll contrast that with an activity Janey very much enjoys and benefits from---the daily walk to the store.  The store is a convenience store near us, which changes names constantly but is currently a 7-11.  The after-school walk there is Janey's favorite ritual.  She asks for it every day.  When we get out to the driveway to start the walk, she is literally dancing with excitement.  I hold her hand and we walk the short way to the store.  She goes in and looks over the chips for a long time.  She only ever picks out the same two or three kinds in rotation, but I know how just looking over a shelf of choices can be a thrill.  When she picks her chips, I then switch the big bag she picks for an identical small bag, and we talk about how they are the same.  She takes the chips to the counter, waiting in line if she needs to, she is patient while I pay, sometimes she'll say thank you to the cashier, she gets a lot of smiles, and then we walk home.  She eats the chips in the driveway while the colony cats of the neighborhood circle her legs to get dropped chips.  She is happy and engaged.  She is also learning---learning the rules of walking along a busy street, how we exchange money for products, how we act in stores, how we treat animals---lots of things.

There are other activities Janey enjoys and benefits from---car rides with music, cooking with Daddy, picking out and putting on videos, going to the library to pick up the books I've ordered online and of course going to school, the big one. 

I wish that Janey could participate in more activities.  But the truth of it is, when I think about it, I wish that for ME.  Not for her.  Her life, when I allow myself to broaden my view of what an activity is, is pretty full already.  In this age of Facebook, I've realized that sometimes what I've wished for are Facebook photo opportunities, a little.  I'd like her to do more of the "normal" childhood things.  But she is 13.  She's growing up.  By that age, she knows what she likes and doesn't like.  I think about myself.  If I had been made to participate, at that age, in sports, or in an art class, or in a dancing class, all things I have little interest in or talent for, I would have hated it.  So they would have failed the enjoyment question.  But would they have benefited?  Truthfully, by that age, no.  I am much the same person now I was then.  I don't like sports.  I am not artistic.  I don't like to dance.  And I knew my mind by that age.  I knew my limits.  Some might argue this point, but from what I've learned from my sons, kids by that age know what drives them, and Janey is not different from other kids that way.  It's very, very easy to tell what she loves and what she doesn't.

As Janey gets older, as her own path in life starts to become more defined, I need to give her the same respect we all deserve, the same right to find her own passions.  It's even more important for me to follow her leads, because it is far too easy when a child doesn't communicate in traditional ways to impose our own will on them.  I'm going to try to often stop and ask---will she enjoy this?  Will it benefit her?---and use those answers as my guide.

Sunday, October 15, 2017

Janey's end of the spectrum

I don't like the term "low-functioning autism".  I don't like it, but I use it sometimes anyway.  I use it because "autism" has come to encompass such a range that it's very hard to explain to those who haven't met Janey the level of care she needs. 
Janey

I don't like the "low" part of the word.  Janey isn't lower than anyone.  She's as valuable a part of society as anyone else.  She has much to offer the world.  She is an interesting, complex, talented person.  As she gets older and Tony and I are better able to understand her, I realize that in so many ways, there are easier parts and harder parts of raising any child at any age.  We are used to Janey's harder parts. They are still hard sometimes.  When Janey screams all weekend as she did a few weekends ago, when she is in pain and can't tell us how or where, when we need to change her bed almost every night...that's hard.  But she's 13, and she has never once said she hated us.  She's never made a snide comment in her life.  She is excited, thrilled even, by a drive-through trip to McDonalds.  Her joy when a song she loves comes in in the car---it's a joy so infectious that I can't even imagine much that is better.

However, she has care needs that are far beyond what most 13 year olds have.  She cannot be alone, not for a moment.  She is not fully toilet trained.  She can't read, write or most of the time talk in full sentences.  She cannot dress herself completely.  

Janey will never live alone.  I used to modify statements like that with "most likely..." but I don't anymore.  She is not going to live alone.  She will live with us until we are gone.  Then...well, that is part of why I want a term that explains Janey's needs better.  That is one of the  black holes in my thoughts.

The other black hole, one I can barely think about or write about, is the fear of abuse.  It is why I no longer think much about respite.  I trust Janey's school, and I trust my family, and close friends.  But respite, paid respite, is not coming from those sources. And I can't pay enough to have Janey cared for in the way I would feel comfortable with, not in this part of the country anyway.  I would want Janey cared for by someone extremely knowledgable both about autism and about her in particular, and I would want there to be a formal backup in place for that person at all times.  Caring for Janey is a high intensity job.  If the caregiver needs or wanted a break, they need to be able to take one, and that is where I think often the problems occur---either when someone is at the breaking point or when they leave a child in the care of someone else for a bit.  Respite for people like Janey needs to be a well-planned, well-vetted, well-staffed situation.

Someday, Tony and I are not going to be on this earth.  And before that, someday I imagine a day will come when neither of us can care for her, and her brothers can't either.  And that is where it's going to become important for society in general to understand her needs, and of course not just her needs, but the needs of others like her, those on the higher need end of the autistic spectrum.

If we don't talk about the needs of children like Janey, if we focus only on being positive, or only on children who are more able to care for themselves, we can't expect people to understand what her needs and the needs of her peers are.  There are those who might say I shouldn't speak for Janey.  I can respect that view, but I also respectfully disagree.  Although Janey certainly can communicate, she can't do so in such a way that explains her needs.  I would rather face my last days in the future knowing that society understood and has provided for Janey's needs than having remained silent about those needs.

Call it what you want to.  Call it severe autism, or low-functioning autism, or classic autism.  But there is a huge divide between Janey and a child who will someday be capable of living on their own.  They both certainly may be autistic, in the wide sense of the world, but at the end of the day, Janey needs a higher level of care, and it is desperately important that those with the power to make fiscal and planning decisions realize that.  We need to make society aware that children like Janey exist, and are worthy of the best we can give them.

Monday, October 9, 2017

October is the cruelest month

A few years ago, when Janey wound up at in a psychiatric hospital, quite a few people told us that October is the month many crises such as the one she was in then start.  They think it's a combination of things---the newness of the school year wearing off and reality hitting, the lessening light, the change in the weather, the lack of big holidays---but whatever it is, a month you would not expect is the month that's hardest for kids prone to being upset.

This October has been tough so far here.  This weekend and the past weekend have been pretty rough for Janey.  She isn't happy.  It's remarkable how long it's been since she's been unhappy like this.  We had a good long run of happy times---of course interrupted now and then by sad days, but it's been a long time since we had a weekend like this and last one.

This weekend, Janey has been screaming a great deal.  We can control the screaming a bit with the old reliable things---a car ride or food---but the car rides get cut short with more screaming and the food would have to be more constant than is healthy or possible to keep back the sadness and anger she seems to feel.

The most frustrating part, for us and I am very sure for her, is how hard it is for her to communicate just what is upsetting her.  Is it physical pain?  Did something upset her when she wasn't with us?  Is she worried about something?  Is she bored?  Is she annoyed with us?  Does she miss her brothers?

We are left, so often, playing a guessing game with her as to what is wrong.  When she is screaming or crying, her already very limited speech becomes even more so.  When we try to guess, often she falls back on her default response---"YES!"  So we say "Do you want a different TV show?" and she screams "YES" when that isn't what she means at all, and we change the show, and she gets even more upset.  I feel awful for her when this happens.  I'm sure it feels like a nightmare for her, being so upset and so unable to explain why she's so upset.

We planned a trip to Maine to see my parents this weekend, especially to see my father, who is home after his awful fall and hospital and rehab stay.  But it's not possible to drive when Janey is screaming.  It's not safe, for her or for us.  And she just cannot be cared for by one person alone when she is in screaming crisis mode.  We tag team.  She's been up now for a long time, and Tony is getting a little hugely deserved sleep while I write this at five in the morning, stopping often to try to calm Janey's outbursts.  I feel, quite honestly, trapped and overwhelmed.

I do believe this will pass.  We've seen times like this before, and they don't last forever.  But while they do last, I want more than anything to find a way to help Janey explain what is wrong.  She is thirteen.  I am sure sometimes what is wrong is that she's bored of us, she's feeling a teenager's angst and annoyance at the world, she is frustrated with her life.  But how do you deal with that kind of feeling when communication is tough?  And I don't want to assume, to say to myself "Oh, she's a teenager" if there is something else wrong.  How do I know?

When the general public thinks of autism, I don't think they think of this.  This isn't the quirky savant, or the toddler full of unlockable, fascinating potential.  This is an amazing, beautiful, complex teenager who is not able to communicate, a person who is not a statistic, or a symbol, or a problem, or a project.  This is my Janey, and I wish so much I could help her be happier.

Friday, September 29, 2017

Thinking about guilt

A few weeks ago, a tough day hit my family.  I thought the toughest part was going to be going to the dentist.  I had quite a toothache, which I had ignored for a while. It was in my one remaining wisdom tooth, and the dentist told me right away it had to come out.  While pulling it out, the tooth next to it fell apart, so they both were extracted.  I have Sjogren's Sydrome, and that does a number on teeth.

At just about the exact time my teeth were coming out, my father in Maine had a terrible fall.  He was on a ladder, and it slipped.  Holding onto the ladder, he was slammed to the ground.  Once he was taken to the hospital, and then to a larger trauma center two hours from home, it was determined that he'd broken both heels and crushed a vertebrae.  Later, it became apparent he'd also had a bad concussion.  He had surgery the next day, and is still in a rehab hospital, not to come home for a few weeks.  Thankfully, he's doing much better, but the recovery was tough.  He's 77, and anesthesia does a number on older men, we've found out.  He was in intensive care for days as they tried to get his oxygen levels regulated, and once at the rehab, he had bouts of scary confused thought.  Now, to hear his voice, he sounds like his old self, but he won't be able to get around without a wheelchair for several months anyway.

The night my mother called to tell me what had happened, the night after the tooth extraction, I was in extreme pain.  However, immediately, I felt I should be there.  I still feel that, a bit.  It wasn't possible. My pain level from the extraction was very high, for about 10 days.  That's another gift from the Sjogren's Syndrome.  I have almost no saliva, and that makes it very hard for a mouth to heal.  I could barely get out of bed.  In addition, our old, old car was in such a state that stopping even at red lights made it dangerously overheat.  We were ready for a new car, but shopping for one?  That was tough.  It was impossible with Janey along, and I wasn't up to watching Janey on my own---Tony was coming home early from work each day to get her off the bus.

The guilt of that week---I can barely describe it.  My father was in terrible shape, and I couldn't get to him.  In my mind, the rest of our reality seemed unimportant.  I kept thinking, over and over "What kind of daughter isn't with her father at a time like this?"

I know that from the outside, things look differently.  But from the inside, guilt is a strong and often irrational emotion.  Guilt doesn't take into consideration that there might be complications, conflicting responsibilities, life realities.  Guilt just pounds away at you.

Gradually, as I had less pain and could think more clearly, I realized that while my father was in the hospital or rehab, he needed me far less than he would once he was home.  There, I would be able to give my mother breaks, and let her get out to get groceries, and keep him company once he was away from the hubbub of the hospital.  My current plan is to wait for when my parents most need the help, and then go up for about a week, during which Tony will come home early from work to get Janey from the bus.  In support of that plan, Tony took a day from work and we finally got a new car, a great deal on a fairly new used car that is 12 years newer than the old car, and will hopefully get us safely anyplace we need to go.

With my clearer thinking, I've realized a few things.  The biggest of them might seem a little unrelated, but it hit me hard yesterday.  For many years, I've longed for respite care for Janey, and with this crisis, people mentioned a lot that we should try again to find it.  But the truth is, as Janey gets older, I am going to be less and less inclined for anyone to care for her but family and the school.  I trust her school completely.  We had a wonderful meeting with her teachers and therapists and program directors earlier this week, and as we almost always are, we left feeling extremely grateful and happy about the level of care they give her.   When she isn't in school, I want her with Tony, her brothers or me.  That is what I feel good about.  I think I'll write another blog entry more about this, but for now, I'll just say that it felt like a relief to realize that, to decide that.

The other realization is that hard as it might be, I need to prioritize.  In other circumstances, of course I would have been by my father's side.  But in our particular circumstance, Janey comes first, followed closely by my own health and that of my other family members, so we are able to continue putting Janey first.  When I am able to step back and remember that, I can figure out ways to care for the other important people in my life.

I write about this at some length because I think many of the parents living the life Tony and I live are faced with situations like this often.  It's not easy to realize that you can't do everything, you can't clone yourself, that sometimes you have to decide what you can and can't do.  It's so good to know there are others out there living this life, making these decisions, and I hope we can all continue supporting each other with understanding and love.

Thursday, September 7, 2017

Janey's 11th first day of school

Janey started 7th grade today.  When I sat down to count, it surprised me a bit that it was first day of school number 11 for her.  She started 3 year old kindergarten just after she turned 3, and she went to 5 year old kindergarten twice...it all adds up to 11 first days of school.

I'll have to say, of all those first days, today might be the one I felt the most anxious about.  That seems counter-intuitive, but it's true.  Mostly, this is because of how summer school went.  Janey seemed truly unhappy for the first extended time at school.  She resisted the bus, she came home seeming upset every day, and eventually, when her teacher told me she was having a very hard time getting through the days, I took her out for the last week or so.  I think I should have done so sooner.  After about a week to decompress, we saw the happy Janey again.  We went on our long trip to take William to Chicago and to see my dear friend Michelle and her family in Ohio, and Janey was amazing.  The only really rough times were when we cruelly tried to get her to use the bathroom at rest stops before eating.  Once we stopped doing that, she was happy almost the whole time.  She slept well in the hotels, traveled, made herself at home at Michelle's house, listened to a ton of music, all that.  We reflected that we didn't think a trip with a more typical 13 year old would have been as tear-free!

I spent a lot of time the last few days thinking about the contrast between the time Janey was in summer school and the trip.  It can sometimes feel, in the midst of Janey being unhappy, that that is just her default state, that what we do makes no difference.  But that's not true.  Of course, we can't go on trips every day, but the things the trip featured---novelty within a familiar framework, tons of music, exercise she enjoyed (playing in hotel pools), much one on one attention---those are proven ingredients for a happy Janey.  And as Janey gets older, it seems like school gives her less and less of what makes her happy.

Of course, the standard response to that would be "school is meant for learning, not entertainment".  And my response back---well, it's been 11 years now.  And Janey hasn't shown she wants or is able to learn what the schools have to teach.  It's not for lack of good teachers or lack of trying.  Most kids in her program DO learn.  They learn to read and write and do math.  They do amazingly well.  I think Janey has spoken.  She's not interested in that kind of learning.  And as she gets older and diverges more from even the standard autism path, it might be getting harder for her to find the level of comfort at school she needs to be relaxed enough to learn at all.

So---what can I do?  I don't think the school I imagine for Janey exists.  I'm not even sure myself what I picture the school being.  Or if what I picture even is a school.  But I can picture what she'd love---a place where she could be outside as much as possible, where she could have access to music at all times, where she would go on excursions to parks, take rides on buses and trains, play in water, rest when she was tired, be read to and look at books, work on basic cooking, be taken to stores and helped to purchase items, be encouraged gently to talk more...that's my dream.

And you might have had the thought I've had.  That sounds like home schooling.  And that has crossed my mind.  But, to a person, everyone who has spent time with Janey has emphatically said to me what I know to be the truth---I couldn't do it.  Not just I don't want to do it---I couldn't, physically or mentally.  Healthwise, I could not make it without the respite that school provides.  Mentally and physically, doing it all alone, I would very quickly be too tired to provide the atmosphere Janey would thrive in.  I know that.  During the weeks this summer we were at home and she was not at school, I was drained beyond what I can explain.  We wound up staying home with Janey watching videos, with a daily walk to get ice cream.  That's all I could do.  That is not what Janey needs.

What happens when No Child Left Behind leaves your child behind?  I know that the schools are required to try to teach Janey, and I know for so many kids, that is a good thing, that there are kids that in the past would not have been offered the chance to learn to read or write that are thriving with that chance.  But in our quest to give each child a chance, can the vision of success be expanded?  Can we give Janey and the other Janeys out there the chance to be the best they can be, even if that best requires a very different kind of school environment?  That is what I am going to be trying to figure out.

Friday, August 18, 2017

Janey is Thirteen

Janey is officially a teenager.  Her birthday was on Wednesday.

Janey blowing out candles
I've been having a bit of a hard time with this birthday.  The day itself went well.  It went well mostly because we didn't really do anything for it.  That was a conscious decision.  Janey's birthdays have a checkered past.  She doesn't like things to be different.  She hates wrapped presents.  She is unpredictable with gatherings---once in a while, she is okay with them, but more often, gathering around and singing and candles and so on upset her.  My wonderful friend Maryellen, who was present at Janey's birth, made her a cake and had us over last weekend and we had candles and a sing then, so I let that be the cake of the day.  On the actual birthday, we had no cake, no presents, no ceremonies, and I think Janey enjoyed her birthday more than she has almost any other year.

Janey on her birthday morning
Some of you might know that Janey's birthday is also her older brother Freddy's birthday.  Janey was born on his 7th birthday.  That gave the day a weird distinction.  From 6 in the morning until 4 in the afternoon, I had no teenager in the house, in the middle of an otherwise unbroken 17 year stretch with one.  Freddy prefers very little birthday ritual too, so his 20th birthday, shared with his sister, was also low-key.  The one ritual we did enjoy, though, is a family dance to the unofficial official birthday song of their shared birthday, "Birthday" by the Beatles, the only song I know that talks about a shared birthday.  We all danced to it, and I have to admit I was crying during much of the dance, a poignant kind of crying.

Janey and her brother Freddy
The way we passed the birthday reflects two sides of my feelings about Janey turning 13.  On one hand, I feel like we've somehow passed some kind of barrier.  We know Janey.  It's taken a long time to really know her, but I think we do now.  We knew what she would like on her day.  She liked having lots of bacon made by Daddy, a trip to McDonalds to get Freddy a birthday breakfast and Janey hash browns, another trip to McDonalds right at 10:30, the minute they started serving lunch
, to get her nuggets and fries, lots of videos, lots of snuggling, lots of music and car rides.  We know Janey well enough now to be able to give her the kind of day she loves, without trying to make it the kind of day I picture a girl's 13th birthday being.

However, the day to me also felt strangely like some kind of deadline.  I wasn't anticipating feeling this, but I did.  I think of myself at 13.  That was the year I entered high school.  I can picture myself very clearly that year, and although of course there were many life happenings far ahead of me still then, in a very real way I haven't changed.  I was me---the me I still am.  And Janey is Janey, the Janey she is now and will be.  And the birthday reflected that Janey.  She might or might not have understood it was her birthday.  She did not have friends over---she has no friends.  She didn't long for some special teenager present, like a phone.  It is not in her realm of knowledge to even know she could want something like that.  She didn't sign up for Facebook, as I remember Maryellen's daughter Julia eagerly doing on her 13th birthday.  She doesn't know what Facebook is.  I picture her life as a line that at junctures like this birthday takes a different route than most life lines.  It is, in a computer word Freddy has taught me, a hard fork, one that is never coming back to the main line.

When I think back on this birthday, I hope what I remember is all of us dancing to the Beatles, laughing and clapping and singing in a way that no only includes Janey, but celebrates her.  And my wish for her is a life full of moments like that, shining moments in her own personal life story.

Tuesday, August 8, 2017

Why We Don't and Why We Should

Reasons why we, the parents of children with low-functioning autism, don't write or talk as often as we might about how tough our lives can be....

Because we don't want to hurt those who share the "autism" part of the diagnosis but not the "low-functioning" part.

Because we know it's natural for people to only have a limited capacity to hear about how hard things can be before they get tired of hearing it.

Because we are too tired to talk about anything.

Because we know it's more politically correct to emphasize the positive.

Because sometimes we are so used to it that it doesn't seem newsworthy.

Because the other people living this life already know how it is, and we think people not living the life generally will never quite get it anyway.

Because we think if we don't put the worst of it into words, it won't quite be as true.

Because we have been taught there is no point in complaining about things that can't be changed.

Because we don't want to hear about "solutions" that don't exist or don't work.

Because we are tired of hearing about all that Temple Grandin's mother did.

Because we feel secretly like we should be doing a better job, and if we were, it wouldn't be so hard.

Because we love our kids so much that it's hard to believe, and admitting how hard our lives are with those same kids feels wrong.

Reasons why we should break the silence and talk and write and shout about it...

Because otherwise, the world assumes autism means Temple Grandin and math geniuses and slightly quirky girls who don't get diagnosed until high school because it's so hard to tell they are actually autistic.

Because maybe, just maybe, if people knew the truth, they would want some of their tax dollars to go toward helping us.

Because when our kids melt down in public, it would help if people didn't assume we were bad parents or they were bad kids.

Because most people could handle the truth.

Because our kids deserve to be written about, to be seen, to be known, as much as all the other kids on earth.

Because of books like the one I read about girls with autism with the line I will never forget "Girls with autism have a very bright future", and the chapter of advice about when our girls get to college.

Because not talking about something means it's an unspeakable tragedy, and our kids' lives are not an unspeakable tragedy.

Because the school system needs to figure out what to do with kids who have had many years of academics and have not learned anything academic.

Because we love our kids so much that we can tell the truth about how our lives truly are in a way that still lets that love shine through.

Because try as we might not to, someday we parents are going to die, and that is the scariest part of all, and it might be less scary if society actually knew our kids, our kids who will someday be adults and will need help that does not yet exist.

Thursday, August 3, 2017

Pulling the plug on summer school

I decided yesterday to not send Janey to the rest of summer school.  There wasn't that much left---just the rest of this week and then next week, seven days.

The decision wasn't actually that tough to make.  Janey had been consistently resisting getting on the bus every morning.  Waiting for the bus had become rather hellish most days.  Through no fault of the bus driver, the times the bus arrived were very varied.  So we had to get outside well before it arrived some days, while other days, it showed up almost right when we started waiting.  The days it didn't, though, Janey did everything in her power to go back inside.  

Yesterday morning was the worst, although the bus arrived quite early.  But before it did, Janey screamed a lot, bit her arm over and over, and then almost bit me, with only a quick jump aside on my part keeping her from doing so.  Right after that, the bus showed up, and she got on.  She always got on like a stoic once the bus did arrive.  

I had my annual physical yesterday morning.  When I got back, there was a call on the machine from Janey's summer school teacher.  I called him back, and he said that day and the past 4 or 5 days of summer school had been very tough, with Janey screaming a good deal, and he wanted to know if anything at home had been different, like Janey's eating or sleeping.  It hadn't been, but in a rare case of me deciding anything on the fly, I realized this just wasn't all worth it, and I told him I'd decided to keep Janey home for the rest of the session.

When Janey got home, I told her summer school was all done.  She didn't really react, but a few minutes later, she came up to me and hugged me---a huge, tight hug, the kind we almost never get from her.  She didn't let go for a long time.  I'm pretty sure that was her reaction.

The whole summer school debacle brings up a couple issues for me.  One is how it's really impossible to find out from Janey how things are going when she's not with me, and the other is the lack of activities truly open to Janey in the summer (or year round, actually)

When it became apparent this summer that Janey wasn't eager to go to summer school, I tried hard to talk with her about it.  But asking Janey questions is next to impossible.  She never answers open-ended questions like "How is summer school?".  Never.  If I give her choices, like "Is summer school good or bad?", she picks one of the answers randomly, usually the last choice given.  If I give her starter sentences, like "At summer school, I feel...." she will occasionally fill in the blank, but she does so with what she thinks is the "right" answer, not what she actually feels.  For example, she can be screaming her head off, and I say "right now, I feel..." and she will say "Happy" 

I am grateful the Boston schools offer the summer programming they do, but from what I have been able to gather over the years, it's very different than "winter" school.  It's also very much school, not camp.  It is aimed at maintaining academic progress.  The class sizes are much bigger than during the regular year, and the schools are held in whatever building has air conditioning.  Unlike most summer programming for most kids, there isn't really much of a fun component.  So for Janey, it basically is all day in a room with a lot of other kids (based on the kids on the bus, pretty much all other boys), working on academics, which is not something she is good at or enjoys.

The thing is, there's very little in the way of alternatives.  Yesterday at the doctors, I saw a magazine that had a headline "The importance of special needs summer camps" and I gave it a look, just to crack myself up.  As I figured, they were the same old options, camps that in no way would accept Janey, camps that pride themselves on "inclusion", if by inclusion you mean that if your child can pass as not having special needs, they are happy to have them there.  They are not camps for someone like Janey.

And of course, it's not essential someone goes to camp.  I personally hated camp, the few times I tried it.  Summer was freedom, a time to do what I wanted, to spend time with friends, to walk through the little woods across the street from me that led to the harbor where I spent much of my time, swimming and watching birds and reading.  Summer was playing double solitaire with my sister while we listened for our favorite songs on the radio.  Summer was walking the three miles into town to buy penny candy.  Summer was sleeping outside in our woodlot.  Summer was working in my mother's store, and using the money I earned to have my father bring me home a Mister Misty Float, and going outside with a book and making that float last for an hour.  Summer, although never my favorite season, was many things when I was Janey's age, and none of those things are things Janey can do.

In two weeks, Janey will be 13, a teenager.  Instead of her world getting bigger, as mine did as I got older, Janey's world seems to get smaller as time goes on.  Playgrounds and spray parks  don't much welcome a child who looks like an adult among the little ones running around.  Janey can't walk alone to the store for candy, and she probably never will be able to.  She has no friends.  She is not going to spend the night with her friends, laughing until way too late, like I did with Laurel or Marie or Julie or Wendy.  She isn't going to play double solitaire with her sister all summer only to realize that said sister was using a totally different set of rules, and that was why Carrie always won and I always lost, and still, remembering those games during which we hoped uncoolly that the latest Barry Manilow or Dan Fogelberg song would come on WABI, the uncool radio station,  is one of my favorite memories.  Janey's life is very limited.  I know that I'm supposed to think of the bright side, to think perhaps she doesn't see it that way, but today, I am feeling like in many ways, that is a tragedy.  

Thursday, July 20, 2017

Little Things Add Up To Big Stress

The last few weeks have been stressful.  Actually, based on how I've felt the last few days, they have felt extremely stressful.  There is nothing "big bad" going on, but lots of small stress causers, and they pile up until I feel like I do now.

I think that's the case with a lot of parents like myself.  We live with a base level of stress, most all the time.  When small things get added on, and on and on, it doesn't take much to put us over the top.  The funny thing is, when things are REALLY bad, something kicks in---adrenaline or a hidden reserve or something.  It's still very hard, but more a sadness or anger or worried hard.  Stress, for me anyway, is like the workaday version of those.  It can be just as tough to deal with, or tougher, without being as headline worthy.

What is stressing me, you ask?  Or even if you don't, I'll tell you.  Let's start with the last 10 minutes, after Janey got off the bus but before she started watching a Christmas Madagascar special and kicked me out of the room....

 I sit out in the 95 degree heat, waiting for the afternoon bus home from summer school.  It comes at highly various times, due to highly various Boston traffic, so I wind up often waiting for it a while.  When it does come, Janey gets off the bus and within a minute, turns off both air conditioners.  She hates AC.  It is sticky hot in a way that Boston sometimes gets, an unbearable way.  I suggest she uses the potty instead of the bed.  This displeases her, and she starts screaming.  I take a deep breath and try to calm down, and offer her some chips if she will try the potty.  She calls my bluff by going to where I've hidden the chips, easily finding them and opening both bags.  And then rejecting them.  As I go to clip one bag shut, she somehow hides the other open bag.  As I search for it, she screams hysterically as I have not instantly put on the TV show she asked for at least 10 seconds before.  I stop the hunt, find the show, clip the chips and sit down to write this.

Now an update, 15 minutes later.  After I wrote what comes before this point, Janey changed her mind about a show.  I went over to put on the new show she asked for.  But that was not really the show she wanted.  I was supposed to know that, somehow.  So she screamed a while longer.  I figured out the right show, and she pushed me out of the room again.  I sat down to write and have some of my coffee.  Janey came over to turn off the AC I'd turned back on.  I turned to talk to her, and knocked over all my coffee.  Naturally, it didn't just go on the floor, but instead on Janey's special pillowcase, the one non-human object in the world she cares for, which she obsessively takes off the pillow and puts down various places.  I tried to sneak the pillowcase into the hamper, but she noticed and got extremely upset.  Somehow it having coffee on it made it necessary in her eyes for me to make more coffee.  She pushed me over to the coffeemaker and screamed until I started some.  I started it, and then snuck back over here.

None of this is huge stuff, but in the half hour since she's been home, it's a lot.  And that has been this week.  Getting on the bus in the morning is the worst.  The bus comes to get her any time in a 30 minute range.  Today it was there at the earliest time, yesterday at the latest time.  If we aren't out there when it comes, they do honk, but they have a lot of kids to pick up and can't wait long.  So...we have to go out to wait for it at the earliest time.  Janey tolerates 5 minutes or so of waiting, but then she wants back in the house.  And screams because she can't go back in.  If the boys are available, I have them stay inside with her, but even then, if they look away for a minute, she takes off her shoes, and otherwise makes herself unpresentable for school.  Generally, they aren't available (Freddy works until late and William is currently visiting my parents), so that isn't even an option.  I just have to figure out how to keep Janey from freaking out in the heat while we wait.  Again, not a huge thing, but it's making me a little crazy.

Oh, shut up, Perfect Woman!
Sometimes, I am up to dealing with stress.  Lately, I'm not.  It's the heat, partly, and my health partly.  I don't get into health details much here, not to be mysterious, just not to overshare, but there are currently four different diagnoses I carry, each of which has among the top 2 symptoms "extreme fatigue"  And I am feeling that extreme fatigue lately.  I am feeling every second of my 51 years.  Having a child that needs full time care, who is not capable of self-care and will not ever be, most likely...it's tiring.  And stressful.

The woman in the picture is how I feel like I'm supposed to be.  It's my ideal, one that reality doesn't modify much.  I should be calm always, working on solutions instead of complaining, feeling grateful Janey goes to summer school instead of wishing it was for longer, cheerfully doing the housework while she is there instead of grudgingly doing it and wishing I was just sleeping instead...yeah.  I should be making up a nice chocolate cake instead of writing right now.

This is mainly just a rant. There aren't solutions.  And I'm certainly not alone.  I know you, out there in the wider autism nation, are right here with me in Stress Village.  And most importantly, I know Janey is stressed too.  And like me, she is doing the best she can.  So, we'll keep on keeping on.  55 minutes until Tony gets home.  Not that I'm counting.



Monday, July 17, 2017

Ideas for the toughest times

Now is not one of the toughest times with Janey.  It's been an overall good couple of years, which is an amazing statement to make, in that it has "years" in it. But this weekend Janey was a bit unhappy, with more crying and screaming than we've seen lately, and of course, it flashed us back to the toughest times. And it made me think---there's a lot of advice and ideas out there for those with newly diagnosed kids, and for daily life, and for tantrums and so on---but what about advice for the times that quite frankly are hellish?  If you haven't had times like that (yet), I hope most sincerely and strongly you never, ever do.  But most of us parenting a child with autism have, or will, and I have a few thoughts about getting through those times.  

Toss out the regular rules

When times were toughest with Janey, during days when she literally screamed all day, or cried all day, it sometimes took me longer than it should have to realize that it wasn't the time for consistency.  I at first would cling to the notion that if I gave in and did unusual things, like let her watch TV all night, eat chips all day, go for car rides day and night, take showers all day long, that it was going to somehow set a bad precedent.  I now realize---who cares?  When times are as tough as they can be, you are focused on survival.  If something gives you five or ten minutes of a happy or at least not as sad a child, and it's something that won't hurt them or you, do it.  You aren't in regular times.

Trade off

This is the time to beg your spouse to call in sick or take some vacation time.  If you are a single parent, hopefully you have someone that can help in times of emergency.  Either way, you MUST get a break now and then.  It can seem impossible, and you can feel as I have at times that you have to be there.  But even if it's only for 5 minutes, you need to have time to recover.  You need to be able to breath.  I remember the times Janey was in the hospital, when I'd get a chance to go eat in the cafeteria.  Those 15 minutes or so would feel like a miracle, and I'd come back able to go on.  And I remember times for whatever reason I couldn't take a break, and feeling quite literally like I could not go on.  You NEED to grab moments for yourself.

Get some mental support from those who get it

I am very, very lucky to have made some friends through this blog who are fellow autism parents.  I hope the rest of you are as lucky.  When you are in the midst of a crisis time, you need to be able to talk to someone who gets it, without "it" having to be explained. You need to be able to speak freely, to rant and rave and cry, to have someone who won't say "now, it's not that bad", to have someone who doesn't necessarily offer advice but just listens, to have someone who doesn't say something like "You REALLY need to get respite care!" when there IS no respite care...that kind of person.  That is part of why I made the Facebook page.  If you ever need to, post there.  I can guarantee there are others there who get it, and will listen.

Put off going to the emergency room as long as you can

You might not have been thinking emergency room, but I think most of us have had that thought at times, when your child has been screaming or biting themselves or banging their heads or crying for days.  It IS an emergency, and it's reasonable to think ER in an emergency.  And I would never, ever discourage anyone from getting help, but I know, from personal experience, that the ER is not a good place to be in a crisis.  It might be necessary, in order to get the next level of help, but it's a nightmare while you are there.  All my life, until my dying day, I will remember the approximately 24 hours we spent in the ER at Children's Hospital, before getting a room, as the worst 24 hours of my life, and the worst 24 hours I hope beyond hope I will ever have.  The ER is not set up to deal well with children with autism, to say the very least.

Don't be shocked if your child winds up in a psychiatric hospital

I was shocked.  I never, ever saw it coming, even though Janey was certainly in crisis.  When her school called and said they were sending her to the hospital by ambulance, well---I can't really describe that moment well.  And then when she was seen there, and the psychiatrist said she needed to be in a psychiatric hospital---again, blindsided. Sure, things were pretty bad.  Horrible, even.  But for whatever reason, I just didn't realize what that probably meant.  I won't get into right now whether the psych hospital was the right place or not, but I can say it was a safe place for her, and if nothing else, it let us recover for a few days while she was being taken care of.

Take it from me---it WILL get better

If anyone had told me how relatively calm and happy the last few years have been with Janey when we were in the midst of the toughest times, I would have laughed at them.  It did not feel possible.  It truly didn't.  But it was.  And talking to quite a few other people who have lived through such times, I've found that it does get better for almost everyone.  I'm not making promises about WHEN it will get better, or how long it will STAY better, but the very worst times somehow seem to be self-limiting.  If you can make it through those weeks or months, and keep yours sane and alive, there will be a day when you can look back at them and, no, not laugh, but marvel.  Marvel at how you made it through.  




Monday, July 10, 2017

Full Circle McDonalds Trip

This weekend, we spent a lot of time organizing our bedroom, to prepare for a badly needed new mattress.  Some of the work involved heavy lifting and cleaning, so we decided I would get Janey out of the house so Tony could do the work without Janey needing Daddy's attention 100% as she usually does on weekends.  I took her various places, one of which was a McDonalds.  During the meal there, I kept flashing back to another trip to that same McDonalds.

Here's a blog entry about that long ago trip, when Janey was four.  (LINK)  It's a trip that has stayed in my mind for all those years because it seemed like a dividing line.  Before that trip, I often took Janey out and about.  I ever said in the entry "Usually she loves to shop", which surprises me a bit now to read, but I vaguely remember as true.  Janey did, when she was very little, like to go shopping and to be out and about.  We often went to McDonalds and ate inside.  But that day, she had a violent reaction to something, and for one of the first times, tried to bite me, and succeeded in biting her own lip and the back of the chair.

After that trip, I didn't take Janey out much on my own ever again.  It wasn't safe.  We did a trip here and there, but overall, I just didn't.

Now, eight and a half years later, I do again.  Finally again I feel safe taking her places.  I have enough confidence in her ability to stay calm and my own ability to calm her if she doesn't stay calm that we are going places, fast food places and short trips to stores and yesterday, swimming at a Y for summer autism free swim.  The trip back to the McDonalds was smooth (besides them giving me a burger instead of grilled chicken in my sandwich and me just eating it rather than trying Janey's patience by returning it).

However, the trip also highlighted to me another change.  Janey is not talking much lately.  Her calmer behavior seemed pared with less activity overall.  During the meal, she said exactly one thing, an echoed "23" when I commented that the number of the marker we had on our table was 23.  She ate in silence, despite my best trials.

When I read back about the long ago trip, it is hard in some ways to read what she said long ago after the trip----"I heard a clicking sound, and the clicking sounded like BOOM! I heard a footprints sound"  All these years later, a sentence like that is basically unheard of.  It's quite hard often to realize that despite many, many years of speech therapy, ABA and schooling and just getting older, Janey talks substantially both less and less complexly than she did soon after her diagnosis, even during periods of more talking than we are in right now.

I don't think the two are connected.  I don't think talking less and being calmer go together by necessity.  At least, that's not supposed to be the plan.  It's supposed to be that talking, communication, can make Janey calmer---that if she can tell us what is bothering her, we can help.  But back then, she told me that long sentence that I thought was about what was making her upset, and it didn't help a bit.

I don't get to decide, of course, but what if I could?  What if I could pick a calmer but less active and communicative Janey or a more communicative but less calm Janey?  Which would be better for her?  I have no idea.

Another thought that has crossed my mind---maybe Janey talks less now because we have learned more about her.  Maybe she doesn't talk when she doesn't feel she has to.  She isn't into talking just to chatter---she talks when she has something to say, and maybe by understanding more of what she needs, she doesn't need to tell us.  Is that good or bad?  Again, I really don't know.

Whatever the reasons, the reflection on the two widely separated trips to McDonalds has left me with more questions than answers.

Thursday, June 29, 2017

Summer without dread (mostly)

Smiles on the train
Tuesday was Janey's last day of school, and I kept thinking it didn't feel like the end of the school year and the start of summer.  After some thought, I put my finger on why---I didn't feel dread.

Of course, I feel guilty saying that.  It doesn't fit with the idolized autism mother I always compare myself to.  I'm not supposed to feel dread that school is over.  I'm supposed to feel happy, energized, ready to enrich Janey's life with all kinds of helpful and fun activities.  But every year up until this one, I felt dread instead.  Dread of long days full of tears, days where my good intentions to do all kinds of interesting activities with Janey ran up against the fact she didn't want to do those activities, or her behavior was such that I couldn't do those activities with her alone.  Dread of the feeling in mid-afternoon where all that keeps me going is counting the minutes until Tony gets home and I can collapse and have ten minutes to myself.  Dread, mostly, for Janey---for the unhappiness that I can do nothing about often, for the boredom I fear that she feels, for the confusion I worry she has about transitions like school to summer---dread of a summer that I always feel falls far short of what I want her summers to be.

Rest with William on the grass
However, this year, the dread was almost non-existent.  A lot of that is that Janey is just plain easier and happier than she used to be.  It's a rare day that she screams and cries all day.  It is possible, now to take her out in public even on my own at times, and certainly with one other adult.  But the other part is a change in my own attitude.  I have you, my dear blog friends, to thank for that for that to a large extend.  Last year I wrote about my guilt over the sameness of Janey's days when there isn't school, about how the highlight of the day is often just a walk to the corner convenience store, about how many videos she watches.  I was comparing her summer life to my own at her age----by the time I was 12, I worked at least part of every summer, I spent tons of time on the ocean, I did things with friends and read and biked and all the things that summer in Maine in the 70s and 80s meant.  But that was my life.  And you all reminded me that Janey might be quite content with her days as they are---that I should not feel guilty about what got us through the day---that a walk to the store for her might be like a walk along the coastline was for me.  I took what you all said very much to heart, and it helped me a huge amount.

Picking out a donut
So---I'm feeling better about this summer.  I've taken a few other steps to help too.  Tony has arranged his vacation time around Janey's summer school, so there are not long periods of time with just me at home.  I've figured out that making sure Janey gets a lot of walking exercise in early in the day leads to more relaxing afternoons.  I'm keeping the house very well stocked with foods she likes, and we are walking to the corner store several times a day.  And I'm letting her watch videos as much as she darn well pleases, and not feeling any guilt over it.

Yesterday, William and I took Janey into the city on the commuter train.  I would not have dared to do such a thing in the recent past.  It went fairly well.  We let Janey pick where we walked, and that resulted in an interesting random ramble around downtown, eventually into a small park with a fountain.  Janey said "I want to swim!" and I rolled up her pants and took off her shoes and she waded in the fountain for a long, long time.  And I didn't care that she got some looks for the financial world type people that were all over the park.  I enjoyed people-watching them, so the looking was two-way.  We met Tony to take the train home with him after work, and then I took a long nap.  If the summer can be like yesterday---not too bad, guilt-free and with Janey at least neutral if not happy all the time, I'm going to call it a success.
South Station, Boston
Walking along the Rose Kennedy Greenway



Friday, June 23, 2017

Searching for words

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

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

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

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

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

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

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

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

Thursday, June 15, 2017

Writing Raw

I don't normally write when I am feeling raw, when I am not in a calm writing state.  But today I will. I won't get into all the reasons, not to be mysterious but just because it's not always the forum here for that.  But I am feeling discouraged this week, very discouraged.

It's not really Janey's behavior that is discouraging me, but with my other worries, it's the constant grinding feeling of knowing there just doesn't seem to be a place in the world for kids like Janey.

I put an article from the New York Times on my Facebook page---here's a link to it--Link  It's just one thing in a long list of endless things, but it upset me.  It talked about a new program in schools for kids with autism, a program that in many ways is like the school Janey attended for the first 5 years of schooling, an inclusion program.  I liked what it had to say, until I read the line that said "To get into the program, children must be deemed capable of doing grade-level work"  Yeah.  Okay.  Like so many other programs supposedly for special needs or autism, kids like Janey are specifically excluded.  This is something I find over and over and over---camps and lessons and special events and on and on and on that simply don't want to deal with a child like Janey (or if I am being kinder, would like to deal with her but just don't have the resources)

And I will get really cranky here and say I'm sick of hearing that, basically, intellectual disability doesn't exist in autism.  It's not something I hear directly, but something that is often implied.  I am the first person to say that I know Janey has many, many strengths.  I know she understands more than she lets on.  I value her extremely much, AS SHE IS.  It is not necessary to make her something she ISN'T to value her.  She is a child that has a very significant intellectual disability.  It's fine if people choose to not accept that.  But they can't choose to not accept that but then still think they are helping all kids with autism.

What if I said "Janey IS capable of doing grade-level work!" and tried to put her in a class like the ones in the article?  Because, who knows?  Maybe she somehow is!  I can just imagine how that would go over.  It would not.  The truth is, what someone might be capable of is not, in practical daily life, that important.  She could not function in a class like the ones described.  I am not just guessing this.  She used to be in a school with classes like the ones described, or actually, a school far MORE inclusive than the ones described, classes that did welcome kids with intellectual disabilities, but were not able to deal with the full range of autism's challenges.  I wish she still could be at that school..  But she can't, and the school was right to admit she couldn't.

And there are so, so many other things like the inclusion classes the article talks about.  If you ever want a good laugh, do a search for camps in your areas that say they accept kids with special needs or even more specifically, kids with autism.  And then look at the details.  There is almost always a rule saying something like "child must be able to function in a 5 to 1 child to adult ratio", "Child must be able to safely follow routines"  or even "Child must be fully toilet trained"  I'm overstating a bit here, but if camp fliers were honest, they might say something like "Children with special needs accepted as long as they don't have any needs which are beyond those of other children"  Or in other words, special needs children are fine if they don't have special needs.

To me, whenever I feel that the media isn't presenting a full picture of children with autism, when voices of parents like me are silenced because we are "speaking for our children and not letting speak for themselves", because we are "portraying autism in a negative light"---well, to me that feels like the truth of Janey, the truth of children like her is something that is being hidden, something that is somehow too horrible to talk about.  And it isn't.  Janey is an amazing person.  Almost everyone who has met her is drawn to her.  She is amazing AS SHE IS.  She is amazing not because she might have mysterious hidden abilities, she is amazing WITH intellectual disabilities.  And WITH occasional self-injurious behaviors.  And WITH incomplete toileting skills.  And WITH aggressive behaviors when she is very upset.  And WITH very limited speech.  She is amazing as she actually is.  And I will fight until my last breath for children like her to be included, truly included.

Thursday, June 8, 2017

"William lives here too"

We've had a lot of success over the past year with new approaches to Janey's behavior and our responses to it, which I've written about a good deal.  In a nutshell, we've realized if we let her follow routines, and we focus on behavior outcomes more than on how we get to those outcomes, life is a lot easier for all of us.  However, there are limits to this approach, and we've been running up against them lately.

Janey and her big brother William
The difference in the last month is that Janey's brothers are home from college.  It's great having them home, for Tony and me.  Janey adores her brothers, and was very excited at first having them here.  But they don't always fit in with the routines she's set up for herself over the school year.  Often, they don't obey the rules she's made---rules like "Nobody can be in the living room with me while I watch TV", or "No music can be played in the house except as approved by me" or "Daddy and Mama give all their attention to me when I ask for it".

When I have read books about parenting kids with autism, especially the extreme "I cured my child" books, one thing I noticed often is that siblings are pushed to the background.  Either there are no siblings, or you get lines like "Of course, the other children often wound up missing out on our attention, but in return they learned so much compassion and love!"  I swore I'd never have that attitude.  Luckily, Janey's autism came to the forefront right around when the boys were reaching the age that less attention from Mama and Daddy was not a bad thing.  I have guilt that will last forever at events I missed and times I was too tired to listen well, but overall, I think Janey being seven years younger than Freddy, and ten years younger than William, was a lucky thing.

However, as anyone with adult or young adult children living at home knows, they still need you at times.  And I don't ever, ever want them to feel like Janey is more important than they are.  But what do you do when a force like Janey's will meets a force like her brothers?

The answer is---I often just don't know.  For Tony and me, the peace and calm that comes from letting Janey control the things she can control is so worth it.  But what do we do when Janey quite literally pushes William out of the room he wants to be in?  What do we do when she screams because Freddy is trying to show me something on the computer?

Generally, I stand firm.  I say things like "William lives here too.  William has a right to be in the room.  Freddy can watch a video on YouTube just like you can"  But, as I've written about, just being firm doesn't work with Janey.  Her routines, her need to control her environment---these things are not something she can change easily based on rewards or deterrents or our attitudes or words.

Over the last week, I've seen the return of some disturbing behaviors I haven't seen Janey show in a long while.  Last night, when I told her that she couldn't use the big TV right when she wanted to, she lunged and tried hard to bite me.  Only a quick reaction on my part stopped her.  This morning, when I was putting on her shoes, she wanted me to use the shoehorn, as Tony usually does.  When I didn't immediately comply, she tried her hardest to break the shoehorn she'd brought me, and almost succeeded.

So---what do I do?  It's one of those cases without a right answer.  All my kids are important to me.  The boys certainly have modified their lives and behaviors a huge amount over the years, but I am not willing to tell them they can't even be around, which is what Janey quite plainly wants at times.

All this is making me think of how extremely difficult it must be for those of you with children close in age to your child with autism.  It's something I have never had to deal with.  Like with so many ideas for dealing with autism that might work for one family but not another, many of the approaches we've had success with would quite literally be impossible if Janey had a close age sibling, or if not impossible, extremely unfair to that sibling.

We'll see how the summer plays out.  I'm glad Janey is still in school for now, and will be in summer school for a good chunk of the summer.  But I'm worried about the changes in behavior, worried with the fear of someone who has seen just how tough things can get.  I hope they don't.

Wednesday, May 31, 2017

Autism and Routines, with thanks to Naoki Higashida

I recently got a chance to review the latest book by Naoki Higashida, a Japanese man with autism who writes by means of pointing to letters on a letterboard.  I'm ashamed to say I've owned "The Reason I Jump" for years, and hadn't read it until now.  When I got the new book, "Fall Down 7 Times Get up 8", I read them both.

The books were not what I expected.  They were far more helpful than I'd expected, and more nuanced.  The author is very honest, and the books are far from all positive---there are many parts of being autistic that he says are very painful.  He sounds much like Janey in terms of his verbal speech and his level of independence.  That doesn't mean that she is like him, any more than I'm like others who speak at my level, but it's a chance to get a glimpse into the mind of someone with more insight into Janey's mind than most.

I won't go over everything about the books---you can read them if you want to.  But what I want to talk about is what I learned about autistic routines, both from the books and from applying what I read to what I've seen in Janey.

Higashida explains (and I'm paraphrasing here) that routines are not really a positive or negative thing.  It's not that they bring him pleasure or make him upset.  It's more than they simply MUST be done.  They are like breathing or eating.  Once something is established as a routine, it feels essential to follow the routine.  If someone tries to prevent this, it's extremely upsetting---again, not because he enjoys the routine so much, but because it feels like something vital is being stopped.

From this, I thought about how routines get established.  We establish routines all the time, often without realizing it.  For example, if Janey goes onto the bed and wets it during the day, our next part in the routine is to get upset, to remind her we always go in the potty, and to change the bed.  By following our parts of the routine, we further set it in place.  I can see how that goes.  If Janey feels the need to urinate, she starts her part of the routine---go to the bed.  We follow our parts---get upset, remind her, change the bed.  The routine to her isn't what it is to us.  She doesn't see it as "IF I wet the bed, THEN they will get all upset, SO I shouldn't wet the bed"  She sees it as a series of events that are linked.

Getting ice cream---one of the happy branches of the routine!
It's making me think that one of the big keys to both Janey and us being happy is to do everything to keep routines that make us unhappy from being established, and do everything to make routines that make us happy established.  I've done this sometimes, without thinking of it as such.  For example, after school used to be a hellish time often.  I thought about what after-school things are positive for Janey and for me.  The first part of coming home for her is always taking off her shoes and going to the refrigerator and looking for a snack.  Now, I always have a snack she will like waiting for her to find.  Before, I'd wait for her to ask, and if she asked for something I didn't have, the routine was for her to freak out.  Now, since she does the looking, her routine is to eat the food she likes that is there.  Next, she watches a video.  Before, if I was in the middle of something, I'd tell her to wait a bit to put on the show she wanted.  Then she'd scream.  Now, I make myself available when I know she'll want a show, and put it on right away.  The routine now is to watch the show happily, and my routine is to get to sit there and read or knit.  We are both happy.

It's my parts of the routine that I can change.  Much of the routine for her is reactions to things I do.  It's FAR easier for me to change the things I do to get the reactions I want from her than it is for her to change her routine.  I think this is where I often used to get tripped up, and where things like ABA don't really take into consideration how the mind of someone with autism works.  We think in terms of actions being modified by feelings.  If someone reacts angrily, or someone gives you a treat that makes you happy, we assume that will change the next step.  We think of thoughts like this... "Mama waited to put on the video because she was busy, and when I screamed, she said she wasn't putting it on because I was screaming, so next time, I won't scream"  But Janey thinks (I believe) more like "First I ask for a video.  Then Mama says not right now.  Then I scream.  Then I wait a little more.  Then later Mama puts on the video"  Janey's screaming is part of the routine.  But if I am available to put on the video right way, I switch Janey to a new routine, a branch in the other one, one where she happily watches a video and I don't have to hear screaming.

So much of what has worked over the past few easier years has come about by what many would probably see as us "giving in" to Janey.  What I think people who see it that way don't get is that we ALL are much happier.  Why is "giving in" seen as bad?  I think it's because we again don't think the way Janey thinks.  We think of someone more typical, someone who might think like "So if I make a fuss, I get what I want.  I need to use that!"  Janey doesn't think that way.  She doesn't generalize that way.  She thinks in terms of the sequence.  The sequence can include screaming or not, but it's not a cause and effect in her mind.

I might not be explaining this as well as I wish I could, but in my mind, it's been a bit of a breakthrough. Higashida explains routines much better than I do.  And I very much appreciate how hard it was for him to write the books, and I thank him for doing so.  His insight is going to make at least a few lives, those of our family, easier and happier.

Sunday, May 28, 2017

The count of five is the best

The last few weeks have been busy.  We went to get Freddy at college, and then the next weekend was one of our biggest events ever as a family, William's graduation from Brandeis!  If I might boast just a bit---he graduated summa cum laude and gave the featured speech at his history major diploma ceremony.  It was a day for the lifelong mental scrapbook.

This past week, I've been thinking over and over how my favorite times are when the count in the household is five---when all three kids are around.  It's crowded, it's loud, it's food consuming and endless dishes and lots of arguments and loud music, and it's fantastic.  It's wonderful.  Being a mother to three very different and very cool kids (or two adults and a kid, now!) is my dream come true.

I've also been reflecting, though, on how autism affects the family count, the family unity.  I'll say the right things and mean them---I think we are all better off than we would be without Janey.  I think she gives our life the salt, the spice, that makes it more than it would be otherwise.  I am pretty sure her brothers and Tony would agree.

However, it also makes it very hard to be a family of five anyplace but at home.  We were very lucky for the graduation weekend.  My parents came down and watched Janey during the morning graduation, so Tony and I could go with Freddy.  When we picked up William and drove him to the ceremony, we all noted how odd it felt to have the four of us in the car.  It's the combination that just about never happens.  Someone is always at home with Janey, or if she is with us, usually the boys aren't.  But we were able to attend, and that was great.  My friend Maryellen was even there as a backup, if something had gone wrong with the arrangements.  But I wish...I wish Janey could have been there too.  And of course she COULD have, but in many real ways, she couldn't have.  She would not have stood two minutes of ceremony.  No-one around us could have listened to the speeches.  One of us would have had to leave, to take her outside.  And the focus would not have been on who deserved it at that moment, William.

For a rare event like a graduation, I accept that we will rarely number five.  But I wish that we could do more as a whole family for the more minor events---a dinner out, a visit to friends, a movie or outdoor concert or trip to the beach.  A lot of why we don't has nothing to do with Janey, and much to do with the big age divide in our family.  The boys are no longer at home most of the time, and when they are, they are often working or with friends, and that is how it should be.  But even when they are around, the simple fact is that very few places are possible to go to with Janey.  Or they are possible if one of us is primarily a caregiver, and ready to leave at any moment.  It's nobody's fault.  It's just the way it is.

Tony, William, Tony's sister Rose and Freddy
And so I treasure the times at home when we are all together.  I treasure them more than I can even explain.  Yesterday morning, Freddy came down for breakfast (more like lunch, as he works late).  The rest of us were eating and talking.  Janey ran over to Freddy and said "It's Freddy G-mara!" (a jokey way we say our last name sometimes)  We all laughed and laughed.  Then I said "It's great to have you here with both your brothers, Janey" and she said "My brothers!  William and Janey and Freddy!"  I started tearing up.  I felt like at that moment, she was grasping something she never quite has before---that she is one of three kids, one of Tony and Suzanne's children, one of the Amaras.  That is what I want for her more than anything on earth---to be part of it all, to be an equal and included member of the group.

I'm going to hold onto the moments this summer we are all together.  William heads to Chicago to graduate school in the fall.  Some day, both boys will perhaps have their own families.  Maybe, if we are lucky, we will have grandchildren.  But the moments we all five at home---those are the moments that make me wish I could save time in a bottle.