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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.

Tuesday, May 16, 2017

Better Than Typical

Trying on a cape!
It's interesting that I am a lot more cautious when writing about the extremes of Janey's behavior than about the everyday parts of it.  I'm always a little wary of being completely honest about how bad or how good it sometimes gets, although I always do try to be as honest as I can.  But either extreme is something I know can be hard to read about.  I don't want to discourage those with girls like Janey when I write about the toughest times, and I don't want to discourage them by writing about the best times, either, if they are going through tough times.  However, our one night trip last weekend with Janey was so wonderful I feel like I have to share.  And what kept striking me the most is how I imagine it was far BETTER than such a trip would be with a typical almost teenager...

Last Friday after Janey got home from school, we drove out to get her brother Freddy in upstate New York, at Skidmore College where he was finished with his sophomore year.  It's a trip Tony could and has done alone, but I really felt like I needed a change of scenery, so we reserved a hotel room for Friday night.

Janey was completely happy during the whole five hour drive out (it would be three hours without any stops, but we don't roll that way).  We played music the whole time, and she rocked out to a huge variety of tunes.  I love how open she is to music, to songs she hasn't heard before and songs she's heard a million times.  If it has a good beat and is interesting, she likes it, and lets us know (as she does if she doesn't like it!).  She isn't influenced by what's cool, or not cool, or what we want her to like---she likes what she likes (which was proven by the fact one of the songs she got really into on the drive was sung by Justin Beiber, and our feelings about the song didn't matter to her!)  We all discovered we loved a song by The Lemonheads, Janey let us know she's not into Madonna, we all liked the various Nicktoons songs my Slacker Radio app picked, we had a blast.
In awe of Freddy's dorm

When we got to Skidmore, Janey was just about overcome with excitement.  We don't go a lot of places at night, being very early to bed people, and getting out in the parking lot of Freddy's dorm, seeing his dorm tower and the streetlights, taking an elevator up to his room, trying on a cape that was in a box of give-away castoffs in the dorm hall----it was like we had set her up with the ultimate night of fun and thrills.  I kept thinking about how I would have felt about such a trip at her age, or how the boys might have felt.  It's fair to say I wouldn't have been quite so excited over a long drive with my parents to pick someone up---one with no real recreation or treats involved.

The thrilling elevator ride!
Janey loved the hotel, slept well, had fun at the breakfast, was happy in the car, where she several times looked to Freddy and said "It's Freddy!" in pure delight he was with us again, requested french fries but did fairly well waiting for it to be 11 am so they would be available at a rest stop McDonalds---she was great for the ride home almost all the way, until literally the last few minutes when she was sick of driving, as were all of us.

It's funny---it somehow sometimes seems wrong to delight in the GOOD that having a child like Janey brings, and it shouldn't be.  There is much that is good about having a 12 year old that still adores us, that can get excited without self-consciousness about little things like an elevator ride or a Happy Meal, having a child that wants little more in life than family, music and fun.  When Janey is happy, we are all happy, and I am going to try to stop thinking of that with an asterick, thinking "Yes, she's happy, but although being a typical preteen might be tougher, she is missing so much..."  Well, we all are missing something.  What she is missing might be different, but what makes her happy is different too, and we can delight in her happiness without thinking of it as a "despite of" thing.  We are so lucky to have you as a daughter, Janey.




Wednesday, May 10, 2017

Janey is not materialistic, and that's a problem

If you look up how to get a child with autism to do something they aren't inclined to do, there is almost always the same answer.  Use a motivator.  Use a reward.  Give it consistently for the target behavior, and not at other times.

When thinking about this, I thought at first "There's nothing that motivates Janey consistently"  But that's not really the case.  There is a lot that motivates Janey, but there is almost nothing that can be given as a reward to her easily.  There is a lot she loves, but not a lot that I would be able to only give her as a reward.

A typical rewards chart
What does Janey love?  What motivates her?  Silly attention, as the first thing that comes into mind---joking around with her with funny voices, or little games.  She lives for things like playing Creep Mouse or pretend tickle or high five with the whole "too slow" routine.  She adores those games.  But she doesn't adore any single one enough for it to work as a motivator for something like ABA or toilet use.  And I can't, or won't, withhold playful attention, the main way she likes to interact, to be something she only gets when she performs.

She loves music, of course.  But there isn't a certain song that would always be a reward.  She likes variety.  And it's not a case of any music.  It's not like she'd be willing to work to hear something she doesn't like or care about.  And again, I would never withhold music, her basically only hobby, from her, hold it out to get her to do what I want.  That would be cruel.

She loves food.  And I'd be fine with having some certain food be a reward for ABA or the like.  But there is no one food she's always into.  Some days, she adores chips or M&Ms, other days, she could care less about them.  Even the kind of foods that could work at home but not at school, like bacon or home fries, are not always something she wants.  Like most of us, she is in the mood for something different on different days.

Trinkets still motivate ME!
What about toys, or stickers, or beads, or something like that?  No, not at all.  She enjoys me looking at her sticker book with her, but actually putting individual stickers in it, or getting stickers as a prize---no interest.  There is not really a toy in the world she cares about.  In fact, there is not really any non-food physical object she is motivated by.  She is not materialistic, in the true meaning of the word.  Material things don't much interest her.

She likes a car ride, but not all the time, and in practicality, it's not something that would work as a reward---certainly not at school, and not all the time at home.  We are not going to put her in the car at 10 at night for using the toilet.  And it isn't practical to tell her she can't have a car ride until she does certain things.  Sometimes, we need her to go in the car.

As does candy...
I know that many kids with autism have a special interest---something that is hugely motivating to them.  And it seems like most programs to teach kids with autism skills count on this.  I don't know if Janey is unusual in there really not being a motivator for her that is usable as a reward.  I know she's not totally alone there----I'm thinking of you, Lindsey, and wondering if others have experienced this with their girls.

In some ways, I admire Janey.  She doesn't have the monkey on her back that almost all of us have---desire for what we don't have.  The things she loves most in life are free things---playing silly games with Mama or Daddy or her brothers, listening to the right song at the right time, being out and about and seeing the world.  But today, as I walked around the Target and looked at all the toys and snacks and stickers and countless things that would have been a huge reward to me (and still would be, to be truthful), I wished very much that teaching Janey could be achieved with something I could buy.

Sunday, May 7, 2017

How girls and boys with autism differ....a collection of links

In response to a question on the Facebook companion page to this blog (thanks, Ragon!), I decided to look at various articles about the differences between girls and boys with autism, and give a list of links.  I'm not endorsing the articles here by including them---just trying to provide a variety of takes on the topic!  Three big points seem to keep getting mentioned---of course that less girls than boys are diagnosed with autism, that girls with autism tend to be diagnosed later, and that girls show autism differently, with less repetitive behaviors and more typical special interests.  There's a lot of talk about the brains of autistic girls and boys being different, and some about how the ratio is less skewed in children with intellectual disabilities.

If you have any articles you've found useful I didn't include (there are MANY out there!), let me know about them---I will probably do another post like this at some point.


http://www.autism.org.uk/about/what-is/gender.aspx

A pretty good piece.  It cites a lot of research, and does talk about how when there is an intellectual disability as part of the autism, the ratios get closer to 1 on 1.  But also a lot about how Aspergers type autism is harder to see in girls.

https://med.stanford.edu/news/all-news/2015/09/girls-and-boys-with-autism-differ-in-behavior-brain-structure.html

About the brain differences between girls and boys with autism, and about how boys tend to have more repetitive behaviors than girls.

http://www.icare4autism.org/news/2012/04/differences-in-autism-symptoms-for-boys-and-girls/

A short general review, including notes on how girls are more affected academically than boys, but tend to have less sensory sensitivities and repetitive behaviors.

https://www.verywell.com/differences-between-boys-and-girls-with-autism-260307

A list of differences between boys and girls with autism.  It mentioned as do several other articles that when girls have a special interest, it tends to be more typical than boys special interests--for example, being into music rather than train schedules.

https://www.scientificamerican.com/article/autism-it-s-different-in-girls/

This is a longer and very interesting piece, although it does have a lot of the "girls with autism are harder to notice" type talk.  But it has a lot of fascinating ideas, like that girls with autism have brains that are more like typical boys than like boys with autism, and the idea that it might seem like girls are more severely affected than boys because it takes more clear-cut autistic behaviors for a girl to get diagnosed at all.

http://www.cnn.com/2012/04/04/health/mental-health/autism-sex-differences/

Talks about the differences in ratios in more pronounced autism, and about how sometimes autism in girls can show itself as severe shyness

http://www.health24.com/Medical/Autism/About-autism/girls-and-boys-have-different-autism-profiles-20161027

An interesting note about how girls and boys with autism both often have the same genetic mutations, but girls need twice as many as boys for the autism to be manifested.

https://www.theatlantic.com/health/archive/2015/10/the-invisible-women-with-autism/410806/?utm_source=SFTwitter

A long article that is quite well done, with three girls showcased, each with a different level of functioning and different issues as a result.  Talks about how girls are diagnosed later, as a rule.  A personal note---tells about a US researcher with a $13 million grant to study the differences between boys and girls with autism.  I hope there are some blockbusters findings from that study, as $13 would certainly go a long way in providing respite and recreations activities for the girls affected.

https://iancommunity.org/ssc/girls-autism-hiding-plain-sight

A lot about how girls with autism appear more typical than boys...but with the interesting note that girls tends to show more autistic behaviors at home than at school or elsewhere in public.

http://raisingchildren.net.au/articles/autism_spectrum_disorder_in_girls.html/context/1037

This is a good summing up type article, with a lot of the points other articles raise in bullet form.

Wednesday, May 3, 2017

Arranging

Setting up the scene---Janey is home from school in the afternoon.  She has asked me to put on a show---let's say Kipper.  As the show starts, she starts her routine.  She takes the remote from me and places it in the middle of the right couch cushion.  She observes it, and then re-places it several times to make sure it's right in the middle.  She then surveys the room, and looks for laundry baskets.  I have four of them, and I tend to leave them in the room after folding laundry.  Janey goes to any she sees and moves them carefully to the place she sees as correct.  Then, if there are any shoes in the room, they need to be lined up, left on the left and right on the right, next to each other.  If it's a light arranging day, the next step is the last---she looks in the trash and makes sure nothing in there is out of place.  Certain things don't belong there---magazines, wet pull-ups, most any form of crumpled paper.  Those items get taken out and put next to the can.  Then, and only then, does Janey settle down to watch her video.

Although it sounds hard to believe, I first noticed Janey arranging things literally as soon as she could purposely use her hands.  She would make sure toys she could reach were symmetrically positioned.  Her arranging habits well pre-date her autism diagnosis.  Over the years, the habit has ebbed and flowed, sometimes almost disappearing for long periods, sometimes being out in force.  Lately, it's at a huge peak.  The arranging rituals can take a very long time.  They are almost always done before she does something she enjoys or something relaxing---before a video or before going to sleep at night.

Unlike many of Janey's behaviors, I relate very much to the organizing and arranging.  Not that I am much of an arranger.  But I know how it is to feel I need to do something that to an outsider doesn't seem to make much sense.  I'm completely sure Janey has OCD (Obsessive-Compulsive Disorder).  I am sure because I also have it.

My OCD never took the form of arranging.  It's funny (in a strange, not ha-ha way)---OCD has a lot of forms, and most people specialize in one of them.  I was a checker.  I checked things.  On my worse days, I could check my pocketbook to make sure my credit cards and keys were in it thirty times in a row.  I could re-open a bill envelope over and over to make sure I put the check in it.  I could go down to the cellar enough to get a great workout to make sure I'd actually started the dryer.

OCD doesn't bother me much any more.  Mine has been very well under control, with medication, for a long time now.  Even before that, like with Janey, sometimes years and years would go by without the checking urges.  It's a strange disorder.  Like Janey also, I think I had OCD pretty much from birth.  I can remember as far back as my memory goes needing to check things, feeling like if I didn't check them, sometimes horrible, something unacceptable, would happen.  Unlike Janey, though, I usually knew that my checking made no sense.  Most people with OCD have that knowledge.  We know our obsessions and compulsions are generated by our minds, but that doesn't make them any easier to not do.  I don't think Janey understands that.  I don't think she has the kind of perspective that allows her to see that.

Sometimes, when the arranging gets out of hand, almost anyone would feel like saying, with some degree of impatience, "Just stop that!  Stop moving the baskets!  Stop taking things out of the trash!  Stop uncrossing people's crossed legs (another big one)!"  But I don't usually feel that way.  I know how it feels.  I know how, despite in my case knowing full well I didn't need to check my pocketbook again, I still couldn't help doing it, no matter how hard to tried to fight it.

When we next see Janey's psychiatrist, I'm going to do my level best to explain more effectively than I have in the past what is going on, and ask him about medication specifically for OCD.  I have resisted, partially because I hate the thought of her being on another medication and also because, interestingly, I think the lack of perspective in her situation makes the OCD less distressing.  It's a bit of a problem for us, but for her, I think it isn't, mostly.  I think it just feels like something that needs to be done, or it did in the past, until this latest escalation.  Now, occasionally, she is getting upset, because part of her arranging now involves my placement.  I am supposed to be in the bedroom while she watches her shows.  I can't always be there, partly because I need to check on her quite often and partly because I don't always want to just stay in there for long periods.  So far, she has mostly accepted it when I've explained I have to be elsewhere---at least for a few minutes, until she tries again to push me to the bedroom.

In a strange, small way, it feels good to be able to relate to one of Janey's behaviors as I do with this one.  I'm not autistic, which is why I often get some very good insight from those adults I know who are autistic on Janey's behavior.  With the OCD, I have the perspective. I've talked before about having OCD, but not quite in this detail, and it's a little hard to do, but also---very fair.  I write about Janey, hoping I am representing her in a way she'd approve of if she could read what I wrote, and so I should also be willing to be open about myself.

Now, to have a few minutes to myself before the bus arrives home and we start this afternoon's session of arranging.....

Thursday, April 27, 2017

Silver Anniversary

Yesterday was our silver anniversary, marking 25 years of marriage.  And I was thinking all day that if I'd somehow been able to see the future, and needed to pick out a husband specifically to be my partner in parenting Janey, I couldn't have picked a better man than Tony.

You don't hear nearly as much about autism fathers as autism mothers.  But I'm pretty sure Tony's not the only fantastic autism father out there (in fact, I know for a fact he isn't---here's a shout-out to you, Dan!)  Tony is Janey's rock star.  I'm okay in her eyes, but Tony is her hero.  When he gets home from work, I see a smile that I just don't see any other time.  Daddy takes her for car rides, dances with her, cooks her favorite foods, makes silly voices for her, delights in funny things she says---Daddy is the sunshine of her life.

Almost every afternoon when Tony walks through the door, I say "Thank you for coming home".  He often jokingly replies "As if I have a choice!"  But he does have a choice.  I know that some fathers, faced with the challenges Janey brings (or the more typical challenges that William and Freddy brought) would not come home---would decide that it was all a little more than he bargained for.  And I won't say what I hate to hear---that I don't know how single mothers do it.  I know how they do it.  I know you do what you have to do.  But I will say I can imagine how incredibly tougher my life would be doing this on my own.

I've read that the toughest years on a marriage when parenting a child like Janey are the early years, but I don't think that's necessarily true.  Most people understand that parenting children in the early years is a very intense thing.  But most people also know that it gets easier, that eventually there will come a day when the children don't need to be cared for 24/7, when the children have lives of their own.  That day will not come for Tony and me, or for so many families like ours.  We will take care of Janey for the rest of our lives.  I am not saying this to try to say what a burden it is, how unfair it is, any of that. It is just how it is.  But I don't think many people would argue when I say that does put a strain on a marriage.

However, I think in many ways Janey has given us a stronger marriage.  We need each other.  We need each other desperately.  When Tony gets home, I am thrilled---each and every day.  I am thrilled not always for the reasons you might think of when reading romance novels---I am thrilled because I know I will get a little break, that I can sit and read for a bit.  When we do get a little bit of time alone together, we treasure it.  Yesterday, we had a wonderful day while Janey was at school.  We watched some TV, we went out to lunch, we talked and laughed and reflected on the past 25 years.  I am sure many people do more exotic things for their silver anniversary.  They might take a cruise, or have a huge party, or buy each other big gifts.  But I think we had just as much fun.

I'm not going to say it's all been sunshine and roses.  There have been times when the stresses of our lives certainly brought out the worst in both of us.  There have been bickering middle of the night fights over who slept less, there have been times that we lashed out at each other because we had run out of patience a few toileting disasters ago, there have been arguments over nit-picky things we felt the other wasn't handling correctly.  But in looking back, those moments fade behind the good moments, the moments we together watched Janey do something that amazed us, the times we quoted Janey's latest video obsession and both of us got the reference and we laughed until we cried, the amazing moments when all three kids were together and happy and we couldn't believe we've created the family we have.

To all the fathers out there, indeed, to all the married couples out there living this uniquely challenging life----we raise a cup of coffee in a virtual toast to you.  And to Tony, Happy Anniversary.  I love you.

Friday, April 21, 2017

On admitting it's ME who is overwhelmed and frustrated...

We are at Friday of spring vacation week.  Tony is taking today off, which is a huge, huge, HUGE relief.  It's been a long week.  Mostly for me, more than Janey, and that is what I'm thinking about.

Last summer when I talked about how Janey's life had little variety, I was very taken with the insight a lot of you gave me---that Janey might not mind the lack of variety, and in fact might like it.  I think you were right.  Janey takes enjoyment in simple things, and she loves having her days follow a pretty predictable script.  She is able to handle changes more than some kids with autism, but she likes it if the changes are within the framework of a general sameness.  With that in mine, I decided this week I would follow Janey's lead, let her set a routine and go with it.

Janey set a routine the first day and without me reminding her or prompting her, she requested it be followed for the next three days.  This is how it went....First, she woke up about six.  I snuggled with her a bit, we had some breakfast, she watched a little bit of TV.  Then she said "Go to the ice cream store?", which, as you've probably heard, is the convenience store near us.  We did the routine of getting dressed for the day, and walked to the store.  Janey loves this.  I got coffee and she looked for a long time at the chips and picked a bag, we payed and walked home.  Then she ate the chips outside while I had my coffee.  

Next, we went back inside for a little more videos time.  Then, Janey asked for a shower.  I set it up and she had one---washing her hair or not depending on if she needed it.  I let her take as long a shower as she felt like.  We got dressed again, a little more videos and then Janey asked for a car ride.  I suggested a place, which didn't really matter, as she wanted simply to be in the car.  We drove, got out wherever I had said, Janey put up with wherever we were for about five minutes, then asked to go home.  

The huge hug when Daddy gets home
When we got home, Janey screamed because the car ride was over.  That's where the routine still was routine, but not a very fun one.  For the rest of the day, until Tony came home early about 2 (he went into work very early so he could come home early), the routine was to scream and ask for Daddy.  As early as I could do it without it being too long, we went outside to wait for Daddy.  When he got home, Janey acted like she was seeing a returning soldier after many long years.  The smiles and hugs were incredible.  Then they went for the kind of car ride she really likes, long and without destination.

By last night, I was in a mood and a half, and I realized something.  As much as I want to be the perfect autism mother, as much as I feel like my own wants shouldn't matter, they do.  And I was bored, frustrated, hurt, tired.  

The ride yesterday was the last straw.  For the ride, I said we could go to Panda Express.  None of us but Janey like this fast food Chinese food, but she loves it.  However, I didn't realize that she had a routine in mind.  There was a line when we got there, as it was lunchtime.  I don't think Janey had ever experienced a line there before (it's not the most popular place, and is right next to a Five Guys and a Chipotle that get most of the customers) and she started freaking out and pushing people.  I got her to wait, we got our food, we sat down and she quickly ate the beef dish she likes, in about three minutes, and she was ready to go.  I had barely had a bite.  She grabbed the tray and wanted to throw it out.  She was rapidly becoming frantic and hysterical.  I gulped down a few bites on the way to the trash and threw out the rest, as the few other customers stared.

Then, Janey wanted to go in the Chipotle.  I realized that probably every other time she'd gone to Panda Express, it was because the boys wanted Chipotle, and Tony took her to Panda Express instead.  Then, they came over to see us at the Chipotle.  The fact that the boys are away at college and Tony was at work didn't matter.  We were supposed to go in the Chipotle and see them.  I got her into the car, screaming and highly upset, and she spent the rest of the afternoon highly angry.

When Tony got home, I started ranting.  I had done everything I could for four days to make it a week that would work for Janey.  Although I fully understand that she has a need for routine, although I know as well as anyone can that she is easily triggered by changes, I was just tired of it.  I was tired of trying so hard to keep her happy.  I was tired of dealing day and night with screaming.  I was tired of....well, all of it.  

And that's the thing of it.  All of us autism mothers and fathers are human beings.  We do our solid best.  But sometimes, it gets to us.  And that is where it gets hard.  Because what do I do?  There is no break from this.  There is no end to it.  There is no day that Janey's needs won't be overwhelming.  This is my life.

Last week I talked about the lack of programs or activities for those like Janey, with high needs autism.  The truth is, Janey doesn't much want outside activities, I don't think.  I do.  I want the break they would give me.  But the few activities that do exist---classes and therapies and so on---require I be there with her.  And that is just harder than no activity at all, and not worth it for something that in my heart I know she doesn't really enjoy anyway.  It's me that needs variety, and a break, not Janey.  

I got over my rant last night.  I am lucky in so many ways, and one of the top pieces of luck is one heck of a wonderful husband, who is taking over with Janey today.  But I keep being struck by that one thought---parents of kids like Janey are people too.  Sometimes it seems like we are supposed to not be. But we are, and sometimes, we are overwhelmed.

Wednesday, April 12, 2017

Baby Bubbles

It's hard to explain exactly, but lately we are seeing something in Janey that is new and wonderful.  She is talking a little more, but it's not just that---it's a change in how she seems, in how she connects.  It's not there all the time, and it can be hard to describe, but when we see it, Tony and I look at each other in amazement.

I'll try to describe the latest incident.  Janey came home from school the other day very upset.  It seemed she was in pain---she was grabbing her belly and twisting around a bit.  It looked to us like gas pain, or pain from constipation.  We eventually gave her some Tums, hoping to help her feel better, and after a while, she did seem to feel much better.

As we were lying down with her at bedtime, we were talking about the Tums.  I said to Tony "I think they work by taking big bubbles in the stomach and breaking them down into little bubbles, so they can get out"  I wasn't talking to Janey, or doing what we sometimes do, talking to Tony in terms we thought Janey would understand, so she could listen indirectly.  Doing that often seems easier for her than talking to her straight on---it's like there is less pressure, so she hears without feeling pressured to respond.  But that's not what I was doing right then.

Right after I said what I said about the bubbles, Janey pointed to her belly and said "Baby bubbles?"  She said it exactly like most people would reply, in a questioning voice, like she was looking for confirmation she understood correctly.  Tony and I looked at each other in amazement.

This might not sound like a big deal to someone who doesn't know Janey, but it was something in several ways we have hardly ever seen.  First, she responded with appropriate timing---no delay.  Secondly, her tone was right on---not echoed sounding or sing-song or anything else, but just questioning.  Thirdly, she used a word we hadn't used, "baby" instead of "little"---so she wasn't quoting or repeating, she was using a synonym to clarify.

It's this little kind of thing we are seeing more and more of.  Janey seems to be, for the lack of a better word, tracking our speech more.  She seems to be following what we say and processing it in real time.

Another story---kind of a funny one.  Janey's uncle Joe often asks her "What's my name?"  It's something he did with all three kids when they were little, as a way of making conversation.  With Janey, he's been asking her that for years.  She replies or not, depending on her mood.  However, the other night, Tony was out with Joe and Janey in the car and I got a call.  Tony said "Are you sitting down?  You won't believe this"  What had happened was that Joe asked Janey, for maybe the ten-thousandth time in her life, "What's my name?" and Janey replied "You forgot your name?"

That answer---wow.  We joked that she must have been sitting on that reply for years, waiting for the right time.  It's an amazing reply to us---it shows she understand the meaning of the word "forgot", that she gets that someone would ask a question to get information, and most of all, it breaks away from a script that has been years and years in the making.

For a long time, Janey's speech didn't progress.  Our theories of why it suddenly is---Janey's having a good year of school and a good year of health.  Things have been steady and fairly upbeat.  She has a great team at school---a terrific teacher, an ABA worker we get super reports about, and a speech therapist we met her at IEP meeting that seems to get Janey in a way that we haven't seen in a speech therapist for a long time.  Those elements together, along with Janey herself maturing and learning, seem to have prompted progress where we hadn't seen it for years.

I hope very much this speech and understanding trend continues.  I am not being pessimistic but rather realistic in saying it very well might level off or regress after time---we've seen that pattern often.  However, knowing that she CAN talk and understand in the way she's been showing---it's wonderful.  It will keep us working.

In the larger picture, I want to get this out there partly to give hope to others.  There is so much emphasis on early intervention, on "crucial stages".  There is always a feeling that the necessary therapy has to happen RIGHT NOW, or never.  Janey is the proof I need to say that isn't necessarily the case.  She's making progress now, at age 12, at a rate we haven't seen since she regressed at 3.  It might not be the kind of progress that you read about, the "miracle cures", the breakthroughs, but it's progress non-the-less, and we couldn't be prouder of her.

Friday, April 7, 2017

All Are Welcome---except, of course, when they aren't

As I made a depressing round of calls this week to try to find a source of outside of school speech therapy for Janey, as I once again looked at summer camp opportunities and realized that the Extended School Year program at the public schools was really her only option, as I thought about how restless Janey is on the weekends, I did some thought exercises.  How would we feel, in today's society, to think that activities, programs, lessons, camps, enrichment opportunities, all those things that are "open to everyone" are in fact closed to one small group of people?  How would we feel knowing that we exclude with polite speech and "of course you understand" and "we aren't equipped to deal with that sort of needs" and "we staff for children who can be in a 4 child to one adult ratio" and "we generally deal with younger children with more potential to someday return to regular classrooms (an actual quote)" and "we'd be happy to help you if you could hire a one on one aide to accompany your child" and many, many other such ways to say NO---we don't include your child?  If this were done on the basis of sex or religion or race or nationality, we'd be outraged.  But because the child in question, the children in question, are autistic, labeled as "low functioning", not "able to follow directions"---well, that's just life.

And the thing of it is, I usually accept it as just life.  I am not a fighter.  I was not especially chosen to fight this autism fight.  I accept reality.  I say "of course I understand".

And the other thing of it is, I don't want Janey where she isn't wanted.  She is so sensitive to tone of voice, to the mood of a room, that she often bursts into tears at tense moments occurring on such TV shows as "Daniel Tiger's Neighborhood" or "Clifford" or "Yo Gabba Gabba".  These are shows aimed at toddlers and preschoolers.  If Daniel's mother is annoyed at Daniel, or Clifford upsets Emily Elizabeth, or the Gabba folk have a misunderstanding, Janey will scream and cry and pound the TV.  So how would she do at a program or camp or activity that just plain doesn't want her there?  How would THEY deal with her toileting accidents, or arm biting, or such?  Would she be yelled at, or worse?

Although I might not like it, I can understand why Janey might not be able to attend some things.  In an ideal world, she should be able to go to anyplace "open to all".  But she can't.  But I cannot accept that after making all kinds of calls,having two kinds of insurance for her, being willing to pay,  there isn't even a place that will provide her with speech therapy, or a social skills group.  I can't accept that she can't attend the city's rec department summer program FOR KIDS WITH SPECIAL NEEDS.  I still can manage to get upset that she had to leave the inclusion school we loved.  I hate it that the only respite we are referred to, over and over and over, is a program we tried, where we personally witnessed a staff of two, one working on checking in children, supposedly supervising approximately 15 kids with severe special needs---a program held up as "the best"---one that now does officially say they can't deal with kids that need one on one attention.

I'm feeling angry today.  And I will calm down.  I'll go back to understanding that "everyone included" doesn't mean that.  I'll go back to realizing Janey is a special case.  I already do realize, very much, that we are incredibly lucky she is welcomed and loved and embraced by the public school she attends---that I can put her on the bus each morning knowing she is cared for all day, and there is a summer program for her that does the same.  But in this city, this country, this place with the money to wage wars and send people into space and provide young sports players with equipment and travel, the city that gave my sons so many incredible opportunities, there is so little for those among us with the most needs.