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 Mother's Day Card They Don't Make

If you stroll the aisles of your local card shop in search of a Mother's Day card, you will find almost anything you need.  My husband actually gave me a card this year from our cats.  Like that card, many of the cards are made to speak for kids that don't talk, or who aren't likely to pick out a card---which, truth be told, are most kids under the age of 20 or so.  Kids aren't extra known for planning ahead to make Mother's Day special.  That's more the work of husbands or teachers, and I appreciate all the work both those categories do to make sure I get some Mother's Day wishes.  However, the card that I've never found is one to give to the mother in your life that has a child with autism---a very specific card from our specifically special kids.  Here's some of what it would say, if it existed....

"Thank you for all the nights you stayed awake when everything in you wanted to sleep.  I don't know why I sometimes wake in the night, but you are there for me when I do."

"Thank you for changing diapers and pull-ups, and occasionally cleaning up from what happens when they aren't changed quickly enough.  Thank you for understanding that I'll be trained when I'm developmentally ready, not when my age says I should be"

"Thank you for finding your inner tiger to speak up for me when I can't.  Thank you for overcoming your fears and being an advocate for me"

"Thank you for focusing in on me when I am melting down in public, and ignoring the stares around me.  Thank you for finding the strength to keep taking me out"

"Thank you for having the courage to follow your instinct as to what will help me best, and thank you for having the flexibility to change course when what you thought would work isn't"

"Thank you for taking joy in my accomplishments.  Thank you for realizing that a triumph is a triumph, no matter what age it occurs at"

"Thank you for finding a way to communicate with me, however you can.  Thank you for knowing that talking in a conventional way isn't the only right kind of communication"

"Thank you for enduring my tantrums, my meltdowns, my crying, my manic laughter, my rituals.  Thank you for understanding I am doing the best I can"

"Thank you for seeing all the ways I am amazing.  Thank you for secretly thinking, as almost every mother thinks of almost every child, that I am one of of a kind, special in a way that no other child is"

"Thank you, most of all, for loving me---loving me with a love that is fierce and all-consuming and never-ending.  Thank you for being my mother"

And my own voice here---thank you to all the mothers of autistic children everywhere.  You are my sisters.  You are my heroes.  You are my strength.  You are amazing.  Thank you.

My weakest special needs parenting skill

For some reason today, I got feeling depressed over what I am very bad at doing---advocating. Most especially, lobbying for services for Janey that she needs. No-one has denied me any services---I just got wondering about summer programs and thinking I should check on the progress of Janey being placed in a program. I have no reason to think everything isn't going smoothly, and I know she's eligible for a program and hopefully will be placed in one. But just THINKING about it brought up memories---of when Janey didn't get a full day K1 placement, of when it took almost a year to get her evaluated for ABA, when I didn't speak up enough when she had an ABA therapist that rarely showed up---all kinds of things. None of these were the fault of her exceptionally good school, but rather the fault of bureaucracy---that nameless, faceless system where the squeaky wheel gets the oil, and I am not squeaky. I am horrible at being squeaky, unless I'm faced with a true crisis. I do okay in that situation---I do pretty well. But when it comes to just nagging or requesting or checking, I'm no good. Part of it is I think a Maine upbringing. You don't put yourself out there like that. You don't demand things. You assume people know what you need, and how badly you need it. You are taught young that demanding things, pushing for things, only makes people less likely to do them for you. I'm sure not everyone who grew up in Maine feels that way, but I think a lot more people than other places. I also just feel sometimes like if someone says they are going to do something, keeping on asking them if it's getting done is like calling them a liar---like saying they aren't really doing what they said they would do. And I'm basically confrontation aversive. I hate to push for things. I hate to demand things. And I worry all the time that hurts my kids, not just Janey.

What makes me mad, when I think about it, is that it shouldn't be that way. There isn't any application for getting a child with special needs. No-one asks you first "Are you a go-getter? Are you good at asking for what you need, or your child needs?" If they had asked, I would have said NO---I'm not good at those things. I have some qualities which are good for the job---I don't have much of a temper, I'm fairly patient, I have a bit of a sense of humor for when things get crazy, but I'm not an advocate. And the reason any parent NEEDS to be an advocate is that the resources are limited. There are never enough good slots for the programs that are out there. The very fact that there ARE good programs and not good programs is WRONG. Every child, not just my child, not just special needs children, not just gifted children, but EVERY child should be given everything our society can give them. And don't tell me the money isn't there. The money is there for war, for corporate welfare, for countless entitlement programs, and so there is money for kids. It's crazy not to invest in them. But if you have a "regular" kid, you can dig out a good summer or a good school for them by not having to demand, but just searching, and researching, and finding and maybe paying. I can't do that for Janey.

I think into the future---to wanting maybe someday to find a living arrangement for her, to the closer future---finding a safe and caring middle school or high school. I worry a lot. I beat myself up a lot, and feel depressed a lot about my failings. I wish that it was enough just to love Janey, to accept her and to enjoy her. I can do that part. But it's not enough.