As honest as I can be, to those new at this autism parenting life.

For some reason, tonight as I tried to get to sleep, I kept picturing a parent out there somewhere, a parent who has just been given the official word they have joined our club, that they have a child with autism.  And I pictured what I would want to say to them, if I allowed myself to be completely honest.  Here goes...

First I want to say to you---nobody in this world knows how your child's life is going to look 5, 10, 20 years from now.  That's true for anyone, but from what I've seen, it's especially true for kids with autism.  Maybe your child will start talking if they don't talk now.  Maybe they will never say a world verbally.  Maybe they will learn to read, to write.  Maybe they will go to college.  Maybe they will never progress academically in any way.  Maybe they will have some talent that is incredible.  Maybe they won't.  The starting point, the point they are at right now, seems to somehow have very little impact on the eventual course of things.

And I honestly don't think that what you do, the therapies you get or the interventions you try or the diets you take on or the model of education you choose will make much of a difference.  Certainly many people will say I'm wrong there.  But it seems to me that our kids do what they are meant to do when they are meant to do it.  How we react to them, what kind of people we surround them with, that matters, but just how we try to teach or train or guide them, the methods we use, the resources we can or can't afford, the diets we chose or don't chose to follow, the methods we embrace, the toys we buy...don't worry too much about them.  Worry about surrounding your child with people who love her, who enjoy her, who want the best for her.

Pick your battles. Don't mortgage your future to move to the school district people say you should live in for the "best services".  Don't spend every waking moment pursuing a therapy that others have told you must be done in the crucial, special, essential time frame of "no matter how early you started, it wasn't early enough". But DO fight with the medical doctors when you know something is wrong physically with your child.  Fight to get them to take that temperature or give that shot or examine that stomach.  That is a battle you must fight, one of the few essential ones.

Don't let anyone make you feel guilty for being overwhelmed, for being tired, for being in despair at times.  Every single parent in the world has those feelings sometimes, but the big difference is that we simply don't get the breaks other parents do.  That is the huge difference.  Other kids go to friend's house.  Other kids can play sports or join activities or even just get to be 12 or 13 and be able to stay at home alone.  Other kids don't need to be watched every second of every day.  I don't think, often, it's that our kids are even tougher to parent than "regular" kids  It's that the parenting time we put in, over the years, is far more than with regular kids.  And when you never, ever get a break, it adds up.  You are going to have some very tough days.

Find some friends who get it.  Find them online, probably, because although it's much easier to find support groups for parents than any respite ever, you aren't going to necessarily or even probably meet the parents at these groups with kids like your own.  Autism takes so many forms.  Find someone with a child a lot like yours, and when you do, talk to them all you can.  Call each other often.  Email.  Visit, even if they live far away, if you can.  Use my Facebook group if you need a place to ask for a friend.  I honestly, truthfully don't know if I would have made it without my compatriot friends.

Give up on trying to reduce screen time, if you have a child who loves to watch the screen.  Believe me, I was the parent whose kids were going to play only with wooden blocks, who would live for books and shun TV.  But Janey loves videos.  I can't picture her life without the movies she loves.  They bring her great joy, and frankly, that brings me great joy.

Enjoy the heck out of the many, many parts of being an autism parent that frankly are just plain better than being a regular parent.  I enjoy having a daughter who will never, ever be catty or exclusionary to other girls, a daughter who jumps with joy because we are going to take her for a car ride, a daughter who loves vegetables with abandon, who has never once argued with me about clothes or told me I was ruining her life or in fact ever done anything deliberately to hurt anyone, ever.  Your reasons will vary, but believe me, there are great parts to being the parent of our kids.

Find ways to enjoy life even on the worst days.  Even on the days when Janey literally screamed all day, on the mornings after she didn't sleep all night, even in between changing bedding over and over, or dodging being bit---even on the days I can barely even think about---there was coffee.  There were stolen word game moments.  There were 15 minute naps after begging my sons to watch their sister when I literally couldn't keep my eyes open.  There were ways to live moment to moment to get through days that I didn't think would ever end.

More than anything else, I want to say that although it might seem right now like you've been given the worst news you can imagine---it isn't.  There will come a day when you realize that you can't possibly imagine your child being anyone other than who they are.  Just like everyone on this earth, they aren't perfect, but they are perfectly themselves.

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.

The gradual changes---negative and positive

I read a short story at some point about the end of the world.  It happened on a Thursday, with a flash of blue light and a strange sound, but people went on with their lives for a while.  Things gradually got weirder and weirder, and about a week later, everyone realized the world was over and faded away.  The reasoning was that the end of the world was just too big a change for people to take in all at once, and so the mind absorbs it slowly, over a bit of time.  Now, having a child diagnosed with autism is IN NO WAY the end of the world.  But that story always struck me---how our mind can't take in all of a big event at once, can't pick  up on all the changes it brings.  I was thinking about how we realize how autism has changed our lives gradually, over days and weeks and even more, over years.

First, the negative.  You might not want to read this if you have a child just diagnosed.  You need the gradual time to process these changes, to have them not come as a blinding shock.  But if you've had a few years to live the autism life, you probably know them.  Your life is vastly changed by your autistic child, every single part of your life.  There are the little things you can't do any more, or can't do with ease---sleep all night, go on trips, eat out, have casual get-togethers with other families, eat a meal as a family calmly, have your dream Christmas, keep up with hobbies, go out with friends...pretty much every little pleasure you used to have is changed drastically.  And there are the big, big things you can't do.  You can't count on a future without a child to care for.  You can't assume your child will go to college, or finish high school, or learn to read.  You can't assume your child won't run out the door, into the street.  You can't count on them keeping themselves safe.  You can't relax.  You can never, ever again totally relax.  You can never, ever again be a normal, regular, mainstream family.  You are changed, for life.

You might read this and think---there are positives?  But there are.  They might be more subtle than the negatives, but they are there.  They take longer to see, sometimes.  But as time goes by, you will find them. You learn the true meaning of not sweating the small stuff, and to be cliched---that almost everything is small stuff.  You find yourself chuckling over the things other people worry about, the things you used to worry about.  Your child is having trouble mastering long division, or isn't scoring at the top of their class in reading?  And you are upset over that?  But your child can talk, has friends, will live on their own some day?  So what's the problem?  That's a freeing feeling, especially if you have other children.  Both my boys have said to me that they realize how little we pressure them compared to other parents.  To us, they are miraculous.  We don't sweat the Cs.  Next, you realize how many truly good people there are out there.  There are people devoted to your child in a way that goes far beyond any job or paycheck.  I have met more wonderful teachers, therapists, paraprofessionals, principals, and also more fellow parents of special needs children that are amazing people than I ever would have known or guessed without Janey.  Having a challenging child introduces you to people up to the challenge.

The last positive is a change that has occurred in my heart.  It's hard to write about, because it involves admitting I didn't used to feel the way I do now.  I remember when I was first pregnant.  Tony and I talked about what we would do if we had a child with Down Syndrome or other issue that caused intellectual disability.  We agreed we would most likely put the child up for adoption.  We thought, we truly thought, that we could not handle a child with that kind of disability.  I felt, in my heart, that children like that were a tragedy.  It makes me cry, to think now how I felt.  Now I see the children at Janey's school with Down Syndrome, the other children with autism, the children with various other challenges, and I can see them as the amazing people they are---people with as much value and personality and importance as any other child. I still wish Janey wasn't autistic.  It's not an easy life, for her or for us.  But as for her being a valuable, lovable person, a person worthy of respect...I am there.  It took a while, but my heart was changed.  I don't measure people by yardsticks like academic tests, or income, or accomplishments any more. That change took a while to come, but I am grateful forever to Janey for bringing it about.

Child newly diagnosed with autism? Four thoughts...

I've been thinking lately about how it feels when you first hear the words "Your child is autistic". I've heard it twice (more if you count the various changing diagnosises my older son had, finally ending in no diagnosis, which I think was the correct one). It's a very, very, very horrible moment, no matter how you look at it. But I think there's a few things that if I had known them, I might have, after the first initial shock, been helped by. Here's a four item list.

1. Don't panic (or panic slowly, anyway). As the Hitchhiker's Guides to the Galaxy is inscribed, that's a big one. Your child is the same person they were the day before you got those words. They're nothing magical about them. They just describe a set of symptoms. You'll be very tempted, in those early days, to feel you have to do something RIGHT THIS MINUTE. And you will have people making you feel that way. For better or worse, there are all kinds of schools of thought about treating autism, and everyone that follows a certain school feels very strongly they are right, and wants to help you by getting you enrolled in that school of thought. There isn't a rush. This isn't always what you are told, but I truly believe it. Don't wait forever, but take a little while to think, to absorb what you were told, to gather your thoughts. If you want to read a book, one I would highly recommend is Making Sense of Autistic Spectrum Disorders by James Coplan, MD. I found it to be the most balanced, kind and truthful book I've read as a general guide. Don't tie yourself into a certain treatment that might not be right or do-able for you until you give yourself a little while to think.

2. One thing you CAN do right away, without committing to a certain school of thought----if your child is under 3, call the state's Early Intervention program. If they are 3 or older, call your local public school. Ask to have your child evaluated for services. It takes a while to get this going, so you can put in that call now. If you later decide not to use what the state or local area offers, it's not going to hurt anything to have made that call. But I think you will probably want to get these free services. I've read too many books that seem to discount public schools or EI. That amazes me. I've gotten wonderful, wonderful services from my local public school, and good services from EI before that. If nothing else, you will get a second evaluation of your child, and that can never hurt.

3. Let yourself still enjoy your child. I know at times I've felt like I couldn't do that, like all my thoughts, my energy and my time with Janey had to be focused on autism-related interactions. They don't. If there is something your child enjoys doing with you, go with it! If they are only happy in the bath, gives them 4 baths a day if you want to. If they like to watch videos, watch with them. If they like to recite facts about Thomas the Tank Engine, go out and get some Thomas books so at least they will have some fresh material. If there's a food they really like, have it more often. There will be many therapists, teachers, specialists, doctors and so on in your child's life, but only one you. Give yourself permission to enjoy that special relationship.

4. Find something that YOU enjoy doing that you will be able to do at home, in spare moments, that has NOTHING to do with autism. You are going to need that. If you like to read, hit the library. If you like to cook, get lots of staple ingredients. If you like to craft, get materials. And GIVE YOURSELF PERMISSION to let everything else go when you have a spare moment, and just enjoy yourself. The housework will still be there, but your sanity might not be, if you don't carve out that time for yourself. For me, it's word games on Facebook. When I have a minute, I play Scrabble. Facebook in general can be great---it's a way to stay in touch with friends and family without having to leave the house. Not that you are going to be home all the time, but I think you need something you do at home to be able to really use spare moments. You can't go to the Y and work out while your child watches a video or naps (unless you have a nanny or something, and most of us don't), but you can read a book, play a Scrabble round, draw a picture, whatever. Take care of yourself. There will be days you can't, and days you somehow feel you shouldn't, but you need to, to be ready for what's going to a be a long and strange trip into the future with your child.