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.

Staying sane while being there for Janey

Janey has calmed down a bit from some of the hard times last week.  It seems like PMS played a role, and it's kind of good to know there might have been a reason---so often, we have no idea at all what is upsetting her.

My son Freddy is home this week, and we've been talking a lot.  He's a great guy to talk to!  One talk we had made me reflect on my life quite a bit.  He talked about how when he went to college last fall, it was hard thinking about our lives back home, thinking about how tough our lives can be.  My instinctive answer was "My life is fine!"  Of course, ask me that on a bad day with Janey or a day after no sleep, and I'll give you a different answer.  But I bounce back pretty quickly, and when others have said similar things to what Freddy said, about what a hard life I have, I've given them the same answer.  I'm not being a martyr when I say most of the time, my life is pretty good.

I've been thinking about what I do to stay sane when stress hits, and the last few years, with four hospitalizations for Janey, her increasingly self-injurious and sometimes aggressive behavior, two boys starting college, the challenge of her sometimes not great sleep...there has been some stress.  But out of necessity, I've figured out things to do that help.

If I were giving advice about stress relief, the main thing I'd say is to find something you can do EVERY day, do without leaving the house and something you can cram into whatever free moments you have.  It's fine to get relief from something like hiking or shopping for clothes or going to yoga classes or whatever, but if something involves leaving the house, finding childcare, spending money...many of us with kids like Janey are NOT going to be able to do that thing regularly.



I've got quite a few at home go-to hobbies.  I love words games.  I play a lot of Scrabble on Facebook, and a lot of single player word games on the iPad.  I have also gotten into SongPop recently (a name that tune type game).  I love photography, and I take a lot of bird pictures in my back yard, as well as flower pictures and pictures of Janey.  Gardening is another stress reliever.  I can sneak outside when Tony is watching Janey or when Janey is at school, and something about digging in the dirt and watching seedlings grow is simply amazingly relaxing.  And I read.  I read a very, very lot.  I have a huge list of books lined up to order from the library, and as soon as I get one batch, I order the next, in order to never be without a book!

All of the hobbies I have are low or no cost.  You do have to buy seeds and a camera to grow flowers or take pictures, but once you do that, there isn't a lot more to buy.  Word games are free, and library book reading is too.  And all of those hobbies can be done in a few minutes here and there, stopping when I need to stop.

I am probably lucky I am basically an introvert.  I don't mind spending a lot of time at home or in fairly solitary pursuits.  I socialize on Facebook or on the phone, mostly.  I do wonder sometimes if having Janey has made me even more of what I already was---a little bit of a loner.  But even being social can be, with some adjustments, something I can do within the restraints of life with Janey.  I have an internet full of people to talk with, if I don't mind the lack of face to face.  I can go to support groups, and do at times, where I can talk to people living lives similar to mine.  And I sometimes actually get away, for lunches with friends while Janey is at school, or as I did recently, for weekend getaways when Tony can watch Janey.

Sometimes, the best times are WITH Janey, when her mood allows.  At times, we put on music and dance to it, or order takeout and eat with glee all together, or go for long car rides to see the state, never getting out of the car but enjoying the scenery.  These are all things that Janey loves and we love too.

There are days when all of this is not enough---days where Janey screams all day and even 5 minutes to play Scrabble is not possible, where the garden goes to weed and the camera stays in the case and the books don't get read.  Those are tough days.  As the years go by, I realize that I need to keep myself sane.  If it comes down to grabbing a minute to do something I enjoy or getting that extra pile of dishes done, I often pick the enjoyment option.  Some people might be able to defer fun, but those of us with kids like Janey can't always count on being able to do that.  It is good for everyone, Janey included, if I am happy, and as time has gone by, I feel less guilty about doing what I need to do to be happy.  I hope all of you have found ways to enjoy the time you have to enjoy.

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.

Does it get easier?

Lately, I've told a few people with young autistic kids that it gets easier.  I've always thought the hardest age is around 4, and from that point on, it gradually does seem not quite as tough.  However, I don't like to tell people falsehoods, and I spent a long time  yesterday trying to figure out in my mind----Does it really get easier?

In giving my answer, of course I need to say I have only my own experiences to go by.  Janey is not typical, even with the autism world, I don't think.  No child is typical, but Janey has not really followed even the autism guidelines.  She has not "improved" significantly since she was diagnosed, in terms of speech or academics.  She is on the low end of the spectrum, so that has been my experience.  My other child originally diagnosed with autism is also not typical, as I think he was a wrong diagnosis, but if he wasn't, his improvement is far beyond what you'd usually see, in that he hasn't been on an IEP since 5th grade and will graduate this June with an over 4.0 GPA.  So maybe I am not the person to ask if it gets better, but I will answer anyway!

And my answer is yes, but not for the reasons you might think.  I don't think it gets easier because the child themself gets easier.  I think that's what I used to think, and of course they do, in a lot of ways, maybe more for other people than me, but they do.  But what really makes it easier is that you settle into your life, you find the right situations for your child, you change your definition of "easy."  It feels easier, although it might not, from some unreal strictly mathematical viewpoint, it might not be.

You settle into the life.  When a child is first diagnosed, it seems like an acute illness.  You feel like you have to do something NOW (and the media and some of the autism community feeds into this).  You feel there is not a moment to waste.  You are rushing around, finding a program, setting up appointments, finding a school, making big decisions.  It's hectic and scary.  Then you are transitioning into all the programs you set up, and anyone knows most autistic kids don't like new places or new experiences.  It's a confusing, scary, terrible time.  But jump from that age, around 2-4, to age 8, where Janey is now.  Unless you've been extremely unlucky, your child is in a school you like.  You've settled on an approach to the autism, you've met other families hopefully, you are an old pro.  Your life is not as hectic, and your child is not starting some new program every other day.  It's the comfort of routine.

The other part is a little harder to think about.  But I think it gets easier because you start expecting less from your life.  Nobody wants to think this.  We don't want to think that our child with autism is going to change our whole life, but like it or not, they will.  When you make the jump from first diagnosed to around age 8, you have already changed your life.  You no longer expect things to go smoothly, and when they do, it feels wonderful.  You have probably pared down your friend list to those who at least try to "get it", so you aren't dealing with people who are unwilling to accept your new reality as much.  You have changed your hobbies and cooking and work life and every other part of your life to accommodate your child.  It's the new normal. And when a day goes well under the new normal, you feel good about it.  You delight in little things that in the past would have gone unnoticed---drinking a full cup of coffee uninterrupted, the delightful 90 minutes a video takes to play out when you get to read a book, your child saying something new or not reversing pronouns or getting half dressed by themselves or using the potty.  Littler things can make you thrilled.  I'm not being a Pollyanna here.  I've read that after hugely good or bad fortune in a life, most people eventually return to the same level of happiness as before the fortune, and I think that's true.  You start to have a normal life again---a new normal, hugely modified, but it doesn't feel that way.  It just feels like life, most of the time.

So yes, I think it does get easier.  Or at least it FEELS easier.  And that's about the same thing, really.

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.

No fun with stickers

I tried hard today to make a fun activity with Janey. I have lots of stickers, all different cool kinds, some that I have gotten at craft stores as parts of big grab bags, with special textures and so on. I took a big book, spiral bound, that I bought for us to color in, and tried playing stickers with Janey. I wasn't directing her---I let her do whatever she wanted with the stickers---but I put some in the book and talked about them. I thought it would be a vocabulary time and a sensory time and all kinds of good things. But like so many times with Janey, it turned instead into a crying time. I don't know why. It seems like she doesn't like to be focused on---she knew I was there to play with her, and that is too intrusive I guess. It's one of those days I feel at such a loss.

Last night seemed better. I was thinking how some parts about Janey are so easy. She loves good food. She was thrilled last night to eat lots of raw carrots and cucumbers, and homemade chicken soup. She is in no way a picky eager. She is also, knock on wood, a good sleeper. She is ready to sleep about 7:45 each night and sleeps until about 7:45 each morning. Some nights she does wake up, but usually it's not that hard to get her back down. She was doing some good talking last night too. She said "I will give Danny (the cat) a carrot". We said cats didn't like carrots much, and she said "It is NOT silly to give Danny a carrot!" although we hadn't used that word.

I feel so alone much of the time. In a world that's supposed to be filled with autistic kids, I feel like the only parent of one on earth lots of times.