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.

Good Friday, an IEP meeting and telling Janey a story

Janey had Good Friday off from school.  We never did, growing up in Maine, and it catches me a little by surprise every year.  

Days like that, single days off that aren't federal holidays so Tony has to work, are hard days with Janey.  This year, though, I realized I was dreading the day less than I had in the past.  It's not that Janey has been in a particularly good mood.  There's been a fair amount of screaming and arm biting lately, for causes unknown.  But I don't feel in despair when this happens as often any more.  I think I finally feel confident that if I work at it, I can calm Janey down, at least for a while.  That's a combination of lots of things, I'm sure---her maturing, the school's hard work, Tony and me gradually becoming Janey-trained---lots of stuff.  Whatever it is, I am glad of it.

The day before Good Friday was Janey's IEP meeting.  I've been to a lot of IEP meetings in my life, more than most people, I'd say.  Every time, I leave feeling grateful for all the people on Janey's team.  They seem to get her, to love her, to truly want her to succeed...they are good people.  

For the first time, though, I'm going to have to probably reject a part of the IEP.  At the start of the meeting, as always, I was asked what my particular concerns about Janey are right now.  I said what's been on my mind lately---that I want a full court press to help Janey communicate, to be able to tell us what is on her mind, particularly in the areas of emotions and health.  I want her to be able to express why she gets so upset, and to tell us if she is in pain.  These are not idle wishes, they are possibly life and death things---thinking about Janey's appendix rupture, and thinking about the levels that Janey's furies and tantrums can reach.  The speech therapist, for various reasons, proposed lowering the amount of speech therapy Janey gets.  No matter how I look at it, I can't see this as a good idea.  She said she felt this would give Janey more time in the classroom to learn functional life skills.  But I feel that we can teach her skills at home much more than we can give her speech therapy at home.  So, I said during the meeting that I will be opposed to the lowering of that service, and everyone was very kind and understanding (and although they can't say so, and didn't say so, I think there was some agreement in the room with my feelings)

Keeping Janey happy on Good Friday, I kept with the theme of trying to help her express herself. After one outburst, as I cuddled Janey to calm her down, I told her a little story---an idea prompted at the meeting by everyone telling me how well Janey responds to being read to (which I wish she did at home!)  I said something like "Once there was a girl named Janey.  Sometimes she got VERY angry and screamed a lot, and bit herself.  Her mama and daddy didn't know why she was so angry, because Janey didn't tell them with words.  Her mama and daddy can't see inside Janey's head.  They don't know what she is thinking.  So when she doesn't say words with her mouth, they don't know what's wrong.  The end"

Janey's reaction was---wow.  I didn't expect it.  She looked at me with a look that said "You don't mean it?  You really can't tell what I am thinking?  You don't know?"  Of course right there, I am saying I DID know what she was thinking, and I don't.  I'm not sure that is what she was thinking.  But the look she gave me was quite something.  It was a look of sudden realization.  I wonder if all these years, Janey just assumed I COULD know what she was thinking and feeling.  I don't expect any miracles from her possible realization that I can't.  But it's a message I'm going to keep sending.

I included the part about words being said by mouth as I think perhaps Janey says words in her head a lot, and doesn't realize they aren't audible to me that way.  Often I'll ask her something, and she looks at me like "why are you asking that?"  To her, what she thinks and what she says out loud might seem the same.

There are areas where I am ready to stop trying.  The OT at the meeting said she isn't really any longer trying to get Janey to write.  They are working instead on stamping her name.  I am okay with that.  Janey has never, ever shown the slightest interest in or skill with using writing utensils.  Her IEP doesn't include any work on learning letters.  That is fine too.  I don't think Janey is going to learn to read, at least not in a traditional way, beyond what I think she can already read.  But speech?  I think, or I hope, that Janey will learn to express herself with more ease.  Perhaps I'm wrong.  Janey's speech comes and goes, but in reality, she has never gotten back to her two year old talking level.  But I have to hold onto that hope, and try very hard to figure out how to help Janey tell us what we need to know.

Happy Easter to all of you who celebrate it!

Some reading

I read a couple books lately about autism.  I come and go on reading autism-related things.  Sometimes I'm not in the mood---I need the mental break that reading on completely unconnected subjects brings---but sometimes, it's good to read the perspectives of others that are dealing with the whole bit.

The first book I read about "If I Could Tell You" by Hannah Brown.  It was actually a novel, about 4 families with autistic kids.  It was set in NYC, in the moneyed high-level career world, which probably biased me against it.  I can never understand why the publishing world seems to publish SO many books set in that world, a world most of us just can't relate to one single bit.  I guess it might be because that's where the publishing houses are, and when the readers at them read book proposals, they think "Wow, that's so much like my life!"  Pretty narrow way to look at things, but I digress.  Aside from being annoyed that the people in the book barely blinked at spending sums of money that would keep my whole family supported for years on whatever autism therapy they chose, it wasn't a bad book.  The parents all picked different ways to deal with the autism, and reading the book would provide a good introduction to these ways, like ABA, Floortime, medical procedures (a bit quackish ones), more mainstream autism schools and so on.  The book seem to feel none of these therapies work well, at least in the eyes of the characters.  The only one that seemed to show promise was called the Sapir Method, and is mostly only available in Israel.  I didn't get a very clear view of what it consisted of from this book.  The book also featured career drama, affairs, family drama---all of which to me seemed a little pasted in to make it a book not JUST about autism.  But I'd say it might be worth a read.

The other book was "Seeing Ezra" by Kerry Cohen.  It was a more conventional autism memoir by a mother.  I liked it mostly.  The author gradually came to a conclusion I think I've come to also---nothing really changes autism.  It's part of the child, and the best idea is to accept it, love the child with it, and work gradually and gently to make their lives better and easier.  I admire Cohen for realizing this pretty early on, and taking Ezra fairly quickly out of situations and therapies that weren't working.  Ezra is higher functioning than Janey, but with some challenges she doesn't have, like eating only a very few foods.  It made me feel lucky Janey is an omnivore---something pretty unusual for kids with autism.  I felt flashes of annoyance at the money issues in this book too.  The family always has a nanny or au pair.  They ask parents for monetary help and gets all kinds of money for a new school.  I realized, though, when thinking about the two books, that the money didn't really make a difference.  In some ways, the fact we don't have any money to try anything much with Janey has prevented us from trying things that most likely would not have done much anyway.  But I wonder if people publishing these books realize how much it can irk us regular folk out there that they always have a nanny or babysitter or someone else being paid to watch their kids while they live lives outside autism now and then, and many of us certainly don't.

People often tell me I should write a book.  I've thought about it, outlined one, and maybe some day I will.  But I struggle with a few things to do with that.  There are many autism memoirs out there.  I would need to feel I could write one with something new to say.  I also think about the boys' privacy.  Any book would have to include them a lot, to tell an accurate story, and they deserve to not be written about, to have their lives out there for anyone to read.  They don't even like to be tagged in Facebook pictures.  But maybe, in the future, I'll figure all that out.  Until then, I'm glad I have this outlet for my writing.