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.  

The Imaginary Conversation

Lately, I've been imagining a conversation a lot.  It's a conversation with someone who has just had a child diagnosed with autism.  In my mind, the child is a girl, like Janey, and is about Janey's age when she was diagnosed, just over three.  It's not too hard to figure out I'm probably really imagining a conversation I would have liked to have had with someone myself, but either way, I've been giving it a lot of thought.

In my imagined scenario, I've invited the mother (it could be a father, too, but it's a mother in my head) to my house, along with their newly diagnosed daughter.  I'm including her because I want to have a place they both can go that is judgement-free, where there has to be no worries about behavior, and because I know it can be hard to get out of the house alone, and I want this mother to be able to come over.  I make us both some coffee, and we sit down, keeping an eye on the little one, putting on a video if she likes that.  Then I start telling her the four big things I want her to know.

The first is that there is nobody, nobody at all, who knows how this will all work out, who knows what her daughter will achieve or not achieve.  I'll tell her that I know she is feeling scared and also feeling hurried, like she needs to get started THIS MINUTE with some kind of therapy, and that there is no shortage of people giving her their particular ideas what will help.  But I want her to know that I feel most kids are going to be what they are going to be.  It's not that love and caring and attention and help are not important---they are, and they let the child reach the full potential of what they are meant to be.  But nobody knows what that potential is.  As a friend said on my Facebook group page recently, there are kids who start out not talking who wind up in graduate school, and there are kids who are very mildly affected who never progress at all, or even regress.  And in both these groups, there are parents who care and love and are dedicated to their child, but in both groups, there are parents who tried everything and parents who took a more measured approach.  There is no one right way, and there is no route to any one outcome.

With that in mind, I'll say something else I feel is very, very important.  I'll tell the mother to enjoy her daughter.  I'll tell her to delight in her, to have fun with her, to get a kick out of her.  Sometimes, because we are taught to see the autism as something to be fixed, cured, changed, we feel like if we delight in a behavior that might be part of the autism, we are somehow not with the program, we are not being single-minded in our quest to fix this all.  And that is just wrong.  We need to be able to feel joy in what our child is right now.  Laugh along with them as they echolalia their way through a video, enjoy their latest obsession along with them, play with them at the level they are at.  Janey is twelve, and she still loves baby games sometimes---peekaboo, patty cake, "where are you?" when clothes cover her eyes.  And I love playing them with her.  There's nothing wrong with that.  There is nothing wrong and everything right with feeling proud of your child, feeling joy in who she is.

Then I'll talk about the harder parts of it all.  Not to jinx them or scare them, but I'll tell the mother that there will be some very, very tough times.  There will be nights so long it's impossible to think there will be a morning associated with them.  There will be calls from school that shock and chill you.  There will be moments of despair, of feeling that if we can get through the next ten minutes, it will be a miracle.  There will be anger at those who don't get it.  There will be resentment of friends with kids for whom everything seems to come easily and they don't even seem to appreciate it.  There will be tiredness, tiredness so extreme there should be a separate word for it.  There will be frustration, and horrible cleaning jobs, and days that feature absolutely nothing but one strategy to get by after another, until finally the day ends.    I will tell them that during all these times, they will feel extremely alone.  They will think that no-one else in the world has lived this life.  They will look sometimes to the internet for help, and find only cheery, bright stories of progress.  They will look for advice and find that of "experts" who have never been awake all night with a screaming child who can't tell you what is wrong.  And I will tell that mother she is NOT alone.  I will tell her many, many of us have lived this life.  We might not talk about it or write about it much, for many different reasons, but we are there.  I will tell the mother when she feels completely alone, imagine a circle of mothers like herself, the middle of the night autism mothers, all raising a cup of coffee to her.

The last thing I will tell her is the thing most like a directive, like a command.  I will tell her that if her child is physically sick, she MUST insist on the same medical care any other child would get.  I will tell her about a night Janey had a high fever and was shaking enough so it seemed like a seizure, a night we called an ambulance and took her to the ER, a night that the doctor there didn't want to "upset" her, and so did a brief and useless exam, and never once touched her belly, the belly where an appendix most likely had already burst.  I will tell her how it took three days for that burst appendix to be found, leaving her with complication after complication.  I will tell her we could have lost Janey's life because someone didn't want to "upset" her---or in another way of looking at it, didn't want to bother with a screaming and hard to deal with autistic child.  I will tell her that she must tell all doctors that if there is anything they would examine on a typical child, they must exam it on Janey, and we will restrain her if necessary.  We would rather have her upset than lose her.

Then, after that intense talk, after in my mind we are both crying, and that has upset her little girl, and I have apologized for that, and we have laughed together at how much coffee we have had, and she is ready to go, I'll hug her and wish her all the best.  I will tell her that her daughter is amazing, because I am sure her daughter will be amazing.  And as they leave, I will cry to myself a little more, thinking of all they are going to discover together.

Your child was newly diagnosed with autism? Maybe don't read this...

For some reason, I started looking today at various fact and advice sites for those with a child newly diagnosed with autism.  It was strange---although it's been 8 years, I still felt panicky reading the information there, feeling like I wasn't up to the challenge and I was going to do everything wrong.  It took me back, and in a bad way.  So I thought---what would I say?  What would I advice?  And then realized what I'd have to say might not be the best thing for someone to read that was new at all of this.  Maybe the busy lists, the lists of tons of people to call or books to read or therapies to research are the best way to handle the early days.  Maybe it's better not to think too much, and rather to take action.  But here's what I'd say, and if you really are in the early days of a diagnosis, think twice before you read this, because I'm going to be brutally honest with my five talking points.  Not brutally negative, but brutally honest.

1.  There is no way to say right now how this will all play out. Your child might be one of the super-achievers.  There might be a day, years from now, that they pull down all As from a fancy college while carrying a part time job and having good friends.  Or...they might never progress much at all.  They might even regress some.  They might never learn much more than they have learned right now.  I had one of each of those.  The very high achieving child was probably misdiagnosed, but then again, maybe your child was too, or maybe mine wasn't, and was just someone destined to progress.  Don't let anyone tell you what your child will do, although knowing that you don't know is a mixed blessing.  I read a book once about girls with autism that said something along the lines of "Girls with autism have an incredibly bright future ahead!"  That line makes me mad every time I think of it, because for many girls (and boys), it's a lie.

2.  Your life is not going to be what you expected.  I'm not going all trip to Holland here.  It's not going to necessarily be better than you expected, but then again, it might be not worse.  It's just not going to be the life you pictured.  No life ever is, but yours...more than most.  You will live a life of IEP meetings and meltdowns and special interests and sleepless nights and desperation and pride and laughing and crying.  Not all at once, and not all of those maybe, but you'll have highs and lows higher and lower than most.  You've been taken off the mainstream track and moved to a different one, one that isn't going to take you where you expected.

3.  Everyone will tell you that you are going to have to be an advocate for your child.  Don't let that terrify you.  It will come naturally.  Not everything has to be a fight.  You will be pleasantly surprised how many people truly want to help you, and are kind beyond anything they need to be.  If you don't feel up to a battle over some issue, it might be that issue isn't worth battling over.  I am the least confrontational person I know, pretty much, but even I find when the issue is important enough, I can do quite a battle, and you will too.  The one area I do want to say you MUST ALWAYS SPEAK UP is for medical issues.  If you KNOW your child is very sick, and they aren't getting the treatment they need because they can't communicate well, SCREAM if you have to.  Your child's life may depend on it, as Janey's life did with her appendix crisis.

4.  Figure out a way, some way, to enjoy yourself even if you can't leave the house.  Because a lot of times, you aren't going to be able to.  Finding respite is near impossible, at least in the United States.  So you might need to mentally escape when you can't physically escape.  Get into something like online games or gardening or knitting or sewing or working out to music or whatever floats your boat, but make it something you can pick up and do whenever you have a moment.

5.  Enjoy the good moments with your child when you can.  There are going to be very tough times, but believe me, there's going to be a lot of fun, too.  There's going to be times your child does something you never thought they could, or says something incredibly funny (whatever way they communicate) or gets so into a song or a video or a book they laugh so hard and dance so hard that you can't even help but laugh and dance along.  Don't feel like you have to have "normal" fun to have fun.  Don't ever feel like the things that delight your child should have to be "typical".  Typical is overrated.

I said five things, but here's a sixth.  It gets easier.  It really does.  It might get tougher before it gets easier, and it might swing back to tough for periods of time after it gets easier, but there is going to come a day when life feels under control again.  When the nights are very, very long, when you have been bitten and hit, when you are cleaning up a diaper mess for the hundredth time, when you want to fling something at the TV when they say it's a snow day, when you despair----please remember it does get easier, and feel free to post a cry for support on the Facebook page that goes with this blog.  We have all been there.  We have your back.  I am thinking of you, about to start on this journey, and I send my love.

Ten Turning Point Posts

This morning, I was doing a little reading back of my posts, something I do now and then.  My first impression---"Wow, that woman sure does like to write a lot!"  Yes, there are over 700 posts.  That's over the course of seven years, but it's still a heck of a lot of writing.  Another thought was about the early years.  For the first few years, I was using the blog mostly as a diary.  The posts are far more dashed off and, in my own worst critic mode, poorly written.  I don't think it ever occurred to me that anyone would be reading them, and at first, nobody was.  Now, I do get a fair amount of readers, which still amazes me every time I think of it.

It struck me that most people probably don't have the time or desire to read through 726 posts to get the story of Janey's life so far.  I decided to pick out 10 posts---posts about what I would call turning points in our journey with Janey.  They aren't my 10 favorite posts, or most popular posts, but they are ones that write about moments I think back on as instances that changed something in our life with Janey.  Here they are, in order of oldest to newest...

The Bad McDonalds Trip

Up until the day of this trip, I felt able to take Janey most anyplace I felt like.  She might have tough moments, but they weren't such that it made a scene or made me feel I couldn't handle her in public.  I remember this trip to McDonalds vividly as the day I realized everything had changed, and I would be no longer ever just jumping in the car with her to go wherever I felt like.

The First Wonderful Music Moment

This might not really have been the first, but it's the first that stands out in my mind as a time that Janey completely surprised and delighted me by making me realize she could communicate things in musical lyrics and melodies she could not do in other ways.

The First Medication 

This was, after an extremely tough stretch, when we gave in and first put Janey on medication.

Deciding Where I Stood

I think this was the first post where I felt I had earned the right to decide for myself where I stood on how I was approaching Janey's autism.  Up until then, I didn't feel I'd earned my stripes enough to do so.

Giving Advice to Non-Autism People

One of the first times I felt I was part of a community and that as part of that community, I had something to say to those who might not understand the community completely!

There Isn't Any Respite

Up until the point written about here, I think I still had a feeling that there was respite for us out there, if we really looked.  After giving up on what we thought we had found, we realized there are kids with special needs and then kids with specialer needs, and that Janey was not the first kind.

The Next Level of Tough

This is what I remember as the beginning of the next era with Janey---when it felt like the stakes were getting higher and Janey was entering a new stage of tough behaviors.

The Biggest Sleep Nightmare

Sleep has been an issue for Janey right along, but this night was the apex of it.  Knocking on wood a thousand times, it never again has been quite as bad as this fabled night.

The End Of Inclusion

It build up to this day for a while---the IEP meeting where we formally agreed Janey would leave the Henderson Inclusion School and enter a program with autism-only classrooms.

The Hospital Month

A summary of the month Janey spent in first a regular hospital and then a psychiatric ward.


This posts point a bit of a negative picture, but that's not of course the whole Janey story!  Right now, again, knocking on wood, Janey seems happier than she has in quite a while.  We are hopeful her latest medication and the changes we have made and the schools have made in how we work with her, and of course her own maturation and remarkable spirit, has started another turning point, a very hopeful one.

When your child bites---Unhelpful Internet Autism Advice

I don't look to the internet for advice on autism much anymore.  I've realized that even within the umbrella of ASD (autism spectrum disorders), Janey has aspects of her personality that are a bit unusual, and that even if she didn't, that old saying about if you've met one kid with autism, you've met one kid with autism holds very true.  It's hard for anyone to give advice about any specific autistic child.  That doesn't, however, keep people from trying.

I was imagining if I had a fairly newly diagnosed child and a problem to solve, and if I sat down at the computer to look for help.  Let's say, for example, I wanted some advice on how to deal with my child biting me.  I did a search this morning looking to see what I could find.  I realized that the three major pieces of advice I kept finding over and over each made me sort of mad, in different ways, in what they assumed about my hypothetical child or about me as a parent.  Why, you ask?  Well, here they are, with my reactions.

"Figure out what prompts the biting"

There's all kinds of variants of this.  I am not saying you shouldn't of course try to figure out what prompts the biting, or in the words ABA therapy uses a lot, what the antecedent is.  I'm just saying that almost any parent in the world would have already done that automatically.  I don't think most of us would be thinking "I'll just view this biting incident in pure isolation.  I won't think a bit about what led up to it".  OF COURSE we have already tried to figure out the prompt.  Sometimes, it's very apparent.  You told your kid no to more cookies and they bit you?  You tried to dress you child and they chomped on your hand?  In those cases, knowing the cause does little good.  What do you do---just give them cookies any time they ask?  Explain to them why they can't have more cookies?  Give them carrots instead of cookies?  Maybe you have a child where those solutions would work, but if you do, you probably don't have an autistic child or a child that bites.

If the cause of the biting isn't readily apparent, and you have to search for it, chances are it's not really the cause.  Kids with autism, as a rule, aren't subtle.  They aren't biting in response to some obscure stimuli.  Often, the sad truth probably is that they are biting because they are upset over something that can't be changed at all, or they are biting for no reason that is external.  In either of these cases, figuring out the cause does nothing.

As parents, we are pretty clued into our kids, and this piece of advice has always bothered me because it assumes parents are clueless.  If the cause is something we can figure out and we are able to change, WE ALREADY HAVE.  If your child hates the sound of the vacuum, you vacuum when they aren't around.  You have already figured that out.  That is not what is causing the biting.

"Give the child something else to bite.  Use a sensory diet"

Oh, wow.  That never once would occur to me.  If my child has just bitten me, all I really need to do is give them a bite toy!  That will fix things!  Oh, there's this stuff called "chewelry" they can bite instead?  You've fixed it all for me!

This one insults the child with autism.  I don't think any child is biting a parent or anyone else because they have nothing else to bite.  There are many, many, many things around a room that can be bitten.  If it's YOU who the child chooses to bite, that's not because you are just handy.  A bite toy or chewelry MIGHT work if your child is chewing their sleeves, or pencils, or something like that, but if they are biting aggressively, it's not really about wanting to bite in gneeral.

Sensory diet.  How I hate that term.  Here's what is meant by that, if you don't know.  It's not that I don't think that parts of what the "diet" consists of aren't helpful things for a child with autism, or for any child or adult.  It's the term I hate.  It smacks of the kind of 5 dollar word used by smug professionals to justify their pay.  I'm being nasty there, and I hope I am not insulting anyone who has used that term.  But use it internally.  When you say it to a parent with autism, you are making them feel like you know some special secret way to help their child.

"React calmly to the biting"

Now here's where the "autism parent as superhero" myth comes in.  Imagine someone has just bitten your hand.  Hard.  Hard enough to leave marks, to maybe even break the skin.  Hard enough that you had to pry their mouth off you.  Hard enough to hurt very, very badly.  Would you react calmly?  Would you say in a calm, steady voice "No biting", without any exclamation point?

Maybe other people can react calmly to severe unexpected pain, but I can't.  When Janey bites me, I yell.  I yell because it hurts.  I yell because I can't help yelling if I am in terrible pain.  I yell because I am angry she bit me.  Yes, I'll admit that.  When Janey bites me, it makes me angry.  And I don't think it's wrong that she sees that.

If by "react calmly", the experts are saying not to hit your child or bite them back, by all means, they should say so.  You SHOULD NOT hit your child or bite them back.  But you already knew that, and didn't need to be told, I would guess.  But staying calm?  We are not superheroes.  No matter how many times you are bitten, if you are really bitten, you scream.  And I think it's probably a good thing for a child to see that biting hurts.  They have to live in the real world, and they will, their whole lives.  People are going to react to being bitten.  And you are a person.


So, after I've dissed all this advice, do I have any to offer in its place?  Not really.  And that is what I wish was admitted more often.  If your child is biting you, and you are a parent with enough sense to come in out of the rain, you have probably already done all you can do to understand, react to and if possible, prevent the biting.  The biting that still occurs is part of the autism.  It may come and go.  It might get better when things are better overall.  It might get worse at times.  But the truth is if your child sometimes bites, they are probably going to keep on sometimes biting.  Protect yourself.  If they are agitated, try not to get in a position where they can bite you.  If they do bite you, get away from them so they don't bite you again.  Put ice on it.  That helps.  And if you yell at them "NO BITING!  YOU HURT ME!"---well, it probably won't do any good, but it's an honest reaction and might not be a bad thing for them to hear.

The days it all catches up to me

Once in a while, I have a day like today.  Today, I just couldn't get anything done while Janey was at school.  I napped.  I watched a little TV.  I sat mindlessly at the computer.  I made myself do the things I had to do.  I got Janey ready for school and took her there.  I mailed some packages.  I folded some laundry.  But beyond that, I felt like I was dragging around a huge weight.

I imagine this is depression, in a way.  Janey is having a medium-tough time lately.  She's been doing some things like scratching herself and biting the place on her arm she likes to bite, and she's been doing a lot of screaming.  She has been sleeping somewhat irregularly---not as bad as it's been, but not good.  She is not talking much, and when she does, she's running the words together, so it's hard to understand her.  She has not gotten over Kipper being taken off Netflix, although we found it on Amazon, but she can't quite access that on her own.  I haven't seen a lot of smiling lately.  I haven't seen my happy Janey in a bit.  And it all wears me down.

I tell myself, and I know in my heart, that most any mother would have days like this when dealing with a child with serious disabilities.  But when the weight comes over me, I don't think completely straight.  I don't tell myself to just let it all go for a day, to give myself a day to just feel it.  I feel angry at myself that I can't get things done.  I feel like a failure for my lack of energy.

I say this all not to just be a downer, but to talk to others out there that I know, from the years I've been writing here, feel the same way at times.  I am going to try to give myself permission to sometimes feel overwhelmed.  I'm going to try hard to accept that some days are going to be given over to feeling what I honestly feel---overwhelmed, discouraged, scared, tired.  The internet isn't always a welcoming place to such feelings.  So many blogs, advice pages, news articles---they are full of solutions, of ideas, of forward motion, of encouragement.  And that is great.  There are days I need that.  But some days, I think I need to accept that being Janey's mother is a very tough gig.  And if you are reading this and you are also struggling with negative feelings---let's make a pact to just let ourselves feel them, once in a while.

Always open for advice

First, just a note that Janey slept much better last night.  She seems better today---not super happy, but very little crying or screaming.  Thank goodness.

I've been thinking a lot about advice lately.  I've noticed that after things are very tough with Janey, and I write about it, a lot of friends and blog readers (and those categories overlap a good deal!) seem hesitant about offering advice.  I never want to make anyone feel that way.  People often say to me "I know I have no idea what it's like to being going through what you are going through".  Well, that's true, but that's true for anything anyone is going through.  None of us truly know what another person's life is like.  I know that everyone has tough challenges, and everyone has situations that are unique to them.  But that doesn't mean that no one has advice or ideas that might be helpful in another person's situation. 

For me personally, advice is never unwelcome.  I don't do anything in regards to Janey (or in any area of my life) I don't want to do, so if the advice is not something I think will work, I just don't use it, but that doesn't mean I'm upset I got it.  I need all the help I can get.  

I can see how it would be easy to drive people out of your life if you have a child with a significant disability. It's very easy, when sleep deprived and overwhelmed and at the end of your rope, to think everyone else's life is so much better than your own, and to start resenting them.  I never want to be like that.  Janey is tough.  I'll never pretend she isn't.  But I have a lot of wonderful things in my life.  She is one of them.  She is a wonder to me, so often.  And I have a great husband, two amazing sons and many friends so amazing I wonder every day what I did to deserve them.  I have enough to eat, shelter, all the books I could ever read (thank you, Boston Public Library), my hobbies, good health care, and I am living in this amazing information age, where from right at my computer, I can access Facebook, email and the whole world of the internet.  I am lucky in so many ways.

There are days when I feel very alone.  There are days when everyone feels very alone, I know.  But I know I'm not alone, and I am so glad I'm not.  So please, if you have ideas, advice, stories---never ever hesitate to share them.

24 hours without sleep

Remember all those times I said we'd had the toughest night ever with Janey?  Well, forget all those.  Last night holds the new record.

It really started night before last, which I wrote about here.  She slept very little that night, and woke up for good at 5:30 in the morning.  She wasn't extra upset or screaming a lot, just awake.  And Sunday wasn't a bad day at the start.  We went to our favorite thrift store, where she was cheerful, we had a good lunch, and then I played with her a lot while Tony watched the Patriots lose.  We were a little surprised she hadn't napped at all, with the very little sleep she got, and I assumed once the second football game was on at 7, she'd been asleep for most of it.  Tony went up to watch the 2nd game with Freddy, and I worked on getting Janey to sleep.  By 10, when she was still going strong and starting to get cranky, I asked Tony to take over.  I slept a couple hours, and was woken up around midnight by Janey's screaming.  She hadn't slept at all.  Then the fun really started.  From midnight on, Janey screamed almost non-stop, the scream that is so incredibly loud and frantic and awful to hear and I am sure, awful to scream.

I can't imagine how tired Janey must have been at that point, but I know how tired I was.  I made coffee three times, in a desperate bid not to give into sleep.  She didn't even drowse off for a second---just screamed.  A few times, she put on Netflix and flipped through shows, watching them for a minute or so and then changing them.  She asked me over and over to snuggle with her, and would stay with me for a brief moment and then jump up and scream.  I took her over and over to the screaming room, got her calm enough to leave, and then had to take her right back.

Tony got up about 4.  By that time, we were both in a state that is hard to even describe.  It was bad enough we talked briefly about going to the emergency room, although we know from everything we've read and heard that would do exactly no good.  But she had been awake so long and was so frantic I just started to worry about how much of that the heart and mind can take.  We kept counting the hours she had been awake.  Finally, at 5:30 in the morning again, exactly 24 hours after she had last slept, she closed her eyes, although we could see she was still fighting it.  I don't think she really slept until about 6.  And she slept...2 hours.  Until 8.  She has been awake since then.

Today has featured a lot of screaming, with some quieter moments.  She is still edgy, still obviously in some kind of manic type mood, still upset and tough enough that I think 99% of the parents out there would call today the worst day they'd ever had with their child, but for us in the very very exclusive 1% club, which I think most of you parents reading belong to, it was just a regular bad day.

Where do we go from here?  I have no idea.  She is on medication, several kinds that are commonly prescribed for autistic kids to help them calm and sleep.  I am starting to feel like they do very little.  We are giving her melatonin, which we have not found to do much of anything.  We finally gave in last night and tried Benedryl, which our pediatrician has said is fine to give her in cases like we were in, but it also seemed to have exactly no effect.  As much as I was possibly able, I was consistent in my approach to her.  We can't let her scream it out in a room alone---she is too unpredictable and self-destructive for that.  Our friends and family are not up to taking her for a night.  The only respite we've ever found was a bust---not able to provide enough care for Janey.  I really, truly don't know what can be done to help her and help us.  I guess we just keep going.

Last night, in my desperation, I looked on Google for "autism" and "screaming".  Most of what I found said in one way or another the same thing "You need to figure out what your child is trying to communicate by the screaming".  I am trying not to swear here.  I'm not a swearer.  But @)#&%#)$(, what do they think anyone with an autistic child tries to do, day and night?  They try to figure it out.  What do the "experts" think?  That we just say "Boy, I can't stand that stupid screaming and crying.  Obviously it means nothing, so I won't try to interpret it!"  Maybe the most telling thing was that in my searching, I found several of my own blog entries from here.  It's a little scary to me to think of some other parent searching and finding something I'd written, when I have so few answers.  If you are one of those parents, I'm sorry.  I know what you are feeling, but I don't know what to do.  I don't think anyone really does, for what that is worth.

Counterintuitive Wins Again

Janey's sleep started to be more and more of an issue around the beginning of August this year.  What was an occasional night waking turned into an every night thing, with her staying awake for hours at a time.  From about the middle of August until around a week ago, I think we had only one night with full sleep.  It was becoming harder and harder to take.  We tried most everything we could think of, including a new medication, melatonin and any behavior approach we could find.  Except one, and that is the one that finally might have worked.

Tony mostly deals with Janey at night.  This is because medical issues make me very tired and also because he is better at getting back to sleep after being woken up.  We have a rule between the two of us, though, that if he or I get overwhelmed, we just tell each other and switch places.  It's necessary, with a high need child like Janey.  However, Tony still does the brunt of the night work, and I greatly appreciate that.  About a week ago, as I slept, Janey once again woke up, and in the morning, Tony told me he had done something new.  He completely embraced her being awake.  He didn't tell her to go back to sleep, he didn't try to keep things quiet, he didn't try to make deals with her, he didn't get upset, he didn't show a trace of annoyance.  He simply accepted she was awake, and had fun with her.  He played the recorder and they sang, they watched some YouTube together, they drew (which to Janey means making her J's on paper), they laughed together---they had a great time.  And after about two hours, Janey fell asleep and stayed asleep, the rest of the night.  And since then, for the last week, Janey has slept all night.  She even slept in on Sunday morning---we all slept until about 10.  It was incredible.  A couple days, she napped, and even then, slept at night.  Every night, we are astonished that another night has gone so well.

Now, of course, as I'm writing this, I'm knocking on wood.  And I in no way think the sleep problem is solved.  Janey is cyclical, and it just could be that the bad sleeping time had reached a natural end.  But it also could be that Janey needed to see that night or day, we were there for her.  Maybe she kept waking up hoping for a time like Tony and she had.  I don't think Janey gets the difference between day and night much---not in that she sleeps all day, but she doesn't understand why we aren't as alert at night when she does wake up.  Maybe now, if she wakes for a minute, she isn't feeling she has to test to see if we will still be happy to see her.

So, so often, Janey has shown us that the regular parenting truths don't work with her.  They don't work because she is autistic, and doesn't have the same motivations and reactions to how people act as most kids do, and they also don't work because she is intellectually disabled.  She doesn't have the ability to reason out things like most kids do.  I don't think she can think out "I really shouldn't bother them at night.  They need sleep.  I need to let them sleep.  They won't be happy if I wake them up"  Her mind doesn't do that, because of the autism and the retardation.  I believe she thinks on a more basic level, a more self-centered level, because that is what she is able to do.  I have to believe she's doing the best she can.  By trying to deal with parenting issues the way that would work best for most children, we are not honoring who she is.  It is something that only now I think I'm truly understanding.

So, at least for now, if Janey awakes in the night, we will do our best to make sure she knows we always are happy to see her, day or night, and we will hope that it keeps working.  My fingers are crossed.

How do you solve a problem like night waking?

For the last week, Janey has woken up every night around midnight or 1 am, and stayed up for a couple hours.  It's incredibly tiring.  Because I am eternally hopeful, I went internet searching for solutions to this problem.  Big surprise---the ideas I found would not work with Janey.  It makes me feel like some kind of defeatist who somehow relishes being able to complain.  Growing up in Maine, that kind of attitude was not greatly admired, as so I think I worry too much about appearing that way.  Believe me, I wish there were solutions for more of the issues with Janey.  I'd love to have solutions.  But the most helpful thing I found in my research was actually just reading that lots of other parents of autistic kids have the same problem, and are at the same loss as to what to do.

The problem with the autism-specific ideas that I found was that they were, as I often find, aimed at higher functioning kids than Janey.  A big theme was just accepting the waking, and letting the child play on their own so you could still sleep.  That would not work.  Janey can't be unsupervised.  Not for a minute.  So if she is awake, we must be awake, one of us, anyway.  Thankfully, I have a husband who shares nighttime duties with me (and probably does more than his share), or I would have long ago gone to the place that mothers go that just can't do it anymore (and I'd like to know where that place is, as I might just have to visit there some day).  Another idea involved pictures, or diagrams, or a clock with a sun and a moon on it, to explain why we don't get up in the night.  Yeah...that is not going to work.  If I could explain things like that to Janey, she'd probably be at the level that she could be unsupervised in the night. A few places suggested medication.  I am not adding any more medication to Janey's routine, and even if I did, they didn't sound hugely effective with night waking, more with getting to sleep in the first place, which isn't Janey's problem.  She goes to sleep just fine---better than most kids.  She goes to sleep TOO fine, often---too early and too deeply, and gets the sleep she needs to get over that edge, better to be bright and cheery and raring to go in the wee hours of the morning.

I think there is something in Janey's brain to do with sleep that is just different.  When she wakes up, and it's dark, it doesn't seem to trigger in her that she should go back to sleep.  She must see that it's dark, and that we don't seem as lively as we do in the daytime, but the way she acts is exactly the same as she acts during the day.  She'll ask us to cook things, she'll ask for TV, she sometimes asks to go to the store, or to school.  She'll put her shoes on.  We sleepily tell her no to those things, that's nighttime, that we need to still sleep, and she might echo back what we say, but it makes no real impression.  It doesn't seem to matter what we do or say.  She'll go back to sleep when she's ready to go back to sleep---usually about 3 am.  Then she sleeeps until 5 or 6, when she's up for the day.  She almost never naps.

One place I read said their child does the waking up just in the winter.  I think that might be partly true---I should try to figure that out.  They said they think it's tied to exercise during the day, but it could also just be part of a seasonal cycle, as many things seem to be with Janey.

As I wrote yesterday, Janey is in a very cheerful pattern lately.  The sleep is tough, but compared to the crying all day times, it's not terrible.  I nap during the day if I have to, Tony goes to bed very early if he has to.  We manage.  But it's another thing I project into the future about.  What will happen if Janey learns to wake without waking us up---if we are out cold and she wakes up and gets a notion to do something dangerous?  We are light sleepers, by necessity, and she always wakes us up if she's up.  But if she doesn't, someday, that's the really scary part.  And I'm too sleepy today to deal with that thought.

Life without a handbook

I'm a believer in handbooks. I like to read what others advice. I am not one to jump into new things without studying them first. A trip for which I'm prepared is much more enjoyable to me than one I just happen into. So when I had kids, I read everything I could get my hands on about pregnancy, childbirth and then raising them.

It was not long at all into my first pregnancy that the books began to fail me. Although I was reading over and over how very rare pregnancy complications are, my body and my doctors were telling me otherwise. I read about the importance of exercise during pregnancy. My doctors told me at first to stay off my feet as much as possible, and then to stay in bed all the time. When William was born two months prematurely, it again threw off every book. I tried adding two months to every landmark he was supposed to meet, and still, he seemed stubbornly unable to stay between the navigational beacons. He sat and walked far later than he was supposed to, and he started saying words far, far before he was supposed to. I brushed off his clear "Daddy" when he said it at 8 months, which was 6 months corrected, until I realized he said it whenever the phone rang, as it was usually Tony calling. He just kept adding words from there, and not sitting up, and never liking the foods he was supposed to, and generally doing everything with total disregard for any guidelines.

But still---I read the books, although I was starting to suspect they didn't know all they thought they did. Freddy barely talked at 2 years. But somehow, I knew he was going to talk just fine when he was ready. I didn't worry, and I like to worry beyond almost anyone. Now, I doubt there are many people on earth as good at talking as my Fred. He's thinking of a career as an announcer, and has already gotten some offers along that line.

And then Janey. By that point, I had pretty much realized that either the handbooks didn't know much, or I just had a knack for raising kids who liked to confound me.

However, with the last few incidents of store-crying, I decided there must be something out there that could help me. I went two different routes. I looked up store tantrum advice for toddlers, and I looked for store crying advice for autistic kids.

Well, you can guess what I have to say about that. The central theme of everything I saw was explaining to your children. Evidently, if I told Janey what to expect in the store, stayed calm when she freaked out, and offered her a treat if she could keep her cool, she'd be just fine. There's a few problems with that. Janey probably understands more than we think, but she in no way understands enough to have a store experience explained to her. And the places she has freaked out are not new places, they are places she's been other times without an issue. She is not patient. She can't wait ten seconds when she wants something without breaking down. I can just picture how it would go over if I told her "don't cry or tantrum for the half hour we are in this store, and I will get you chips" She'd hear one word clearly---chips. And want them that second. And cry all the harder without them. As for me staying calm---I try very hard to do that. I might be able to, if I am in a store absolutely alone. But with every single eye staring at me, and some people feeling they must offer advice or show their disgust---well, I'd like to see anyone stay calm.

The autism-specific advice all tended toward kids with much more verbal ability and level of understanding than Janey. I can understand that. If I felt like writing some autism advice, it would be a lot easier to write it for higher functioning kids. I'm starting to suspect the truth. There is no advice that really works consistently when dealing with lower functioning kids with autism. There are stop-gap measures, like hugging her or giving her food instantly, and there are very long term measures, like having her learn more language through school and ABA. But the middle-term measures that would get us through a store trip, or a middle of the night scream---they don't exist.

And so I'm left living without a handbook. Sometimes I think I'd like to try to write one, but then I realize anything that might work for Janey might not work for any other kid "like" Janey. I put like in quotations as there is no other kid like Janey. That is true for all kids, but like how Orwell said some animals are more equal than others, some kids are more unique than others. If you are a fellow member of the club of parents of low-functioning autistic kids, you can wear that as a badge of pride. You've got yourself a kid that you are the expert on. No-one else really gets it. Whatever you are doing for your kid is most likely better already than any expert could teach you. It's taken me a lot of years of parenting to accept that I'm the expert on my own kids.

The Night Siege

It's one in the morning. Janey wakes up, and as always, comes to me. She wakes me up and says "Baby Einstein!". I say "It's nighttime now. We don't watch videos at night. We sleep at night. Snuggle down next to me and let's sleep". Janey says again, in a louder voice "BABY EINSTEIN". I repeat my lines. Janey kicks me. I tell her to stop and go to sleep. Variations of this repeat for a while, then she wakes up Tony. He says what I have said. We both lay down with her between us. She kicks up both, screams "I WANT BABY EINSTEIN!". She tries a little variation, by doing what is so often done to her, modeling the correct response "I say...YES!" We repeat tiredly the lines about it being nighttime, time to go to sleep. We then try ignoring. That only makes her more determined to get her point across. Several times she attempts to get up and put on the DVD herself. We bring her back to bed. It is now 2:30am. Tony has to get up for work at 4:30. I have to drive Freddy to the bus at 6. We both are at the point where tired doesn't even begin to describe it. Janey is wide awake, with the one thought in her mind. We look at each other, and wordlessly, Tony gets up and puts on Baby Einstein. Janey delightedly watches it for a few minutes, and then goes to sleep. She sleeps until 6:30, when she gets back up and asks for, yes indeed, Baby Einstein.

Now from Janey's point of view, as best as I can figure it. Janey wakes up. It is dark, and she isn't next to Mama. She gets up to go to Mama. In her mind, the Baby Einstein video is playing. But she needs to see it, to refresh her memory of some certain part, to tickle her brain, to scratch the mental itch which is bothering her. She doesn't have distraction techniques. When she wants Baby Einstein, she wants only that. She uses her words, as she has been taught, to tell Mama what she wants. Mama doesn't answer right. Mama must not get how important this is. She asks again. Mama again is saying no. Mama must not understand the question. She will tell Mama how to answer "I say...YES!" Mama laughs a little at that, and still says no. She decides Daddy might be the one to ask. He says no too. Meanwhile that need to see Baby Einstein is getting worse and worse. Mama and Daddy keep talking about dark, and sleep, and tired. Those words don't mean much. They are missing the essential point, that Baby Einstein must be watched. They tell her to sleep. But it's impossible to sleep. Time goes by---some hazy amount of time, and finally they see the light and put on the DVD. Janey sees what she needs to see. Her mind is quieted. She goes to sleep.

What lessons are learned here? I have very little idea. I've learned, over and over and over, that regular parenting techniques don't work on autistic kids, usually. They don't want to please you. They don't always feel tired in the night. They don't have the ability to shut off thoughts, or replace them with other thoughts. Often, there is a voice in my head telling me the "right" thing to do. "Don't give in to her! You need to stand firm!". But there is my body, saying I must sleep at all costs, Tony needs to get sleep before he goes driving on 128 at 5am. WE HAVE TO SLEEP. What good did the hour and a half siege do? No good. Janey didn't learn a lesson. Other times, when it was perhaps the weekend and we needed to get to sleep less, we've outlasted her. It has taken sometimes up to 6 hours. And she sleeps for a few hours, wakes and is in a terrible mood, and wants the same thing she wanted when she went to sleep.

And we have other kids, and jobs, and other parts of our lives. What I think of collectively as "The Books" and "The Experts" might say we should never have given in. But those books and experts always seem to deal in isolation---there is only the autistic child. There is no need to sleep, no older kids that need rides or forms signed or attention. No jobs. They also assume autistic minds are like regular minds in some core ways that I don't think they are. Janey doesn't seem to learn from the past as other kids do. She was not thinking "Gee, they don't seem very happy I woke them up. They aren't putting on my video. I should just go to sleep and not try this again". She is thinking one thing, and one thing only "BABY EINSTEIN".

And so another day in a half dream state, barely awake. Janey, as always seems to be the case, is bright and awake and shows no effects of lack of sleep. And so we go on.

What bothers me

I have sort of put my finger on what bothers me about people telling me to try ABA (or dairy free diets, or vitamins, or anything they tell me). If I tell someone that Janey is autistic, they can have know me 5 seconds and Janey just as long or not at all, and they are saying "How much ABA does she get? Is she getting ABA? What kind of program is she in at school? What diets have you tried?" And then feeling free to tell me EXACTLY what I need to do---"You have to force the schools to give her ABA---you have to try diets, you have to this and that..." JUST IMAGINE someone saying that about a "regular" kid---"You have to put her in dancing lessons, you have to send her to private school, you have to make her eat pumpkin every day, you have to teach her phonics...." It just wouldn't happen. Most of us allow others to make decisions about how to raise their own kids, or at least don't presume to know what is best for a child they don't know or barely know. I find it sort of biased to assume EVERY child with autism needs the exact same things.