Even Sheldon Cooper Has A Girlfriend

I don't mean to give away any spoilers here, but really, if you're three seasons behind on Big Bang Theory, I'm sure I'm not the first person to have given something away.

So, I have to say that I love that Sheldon Cooper has a girlfriend. It may be sexless, and kinda weird, but it's theirs, and it's working for them.

Granted, they're make believe characters, but I don't care. As the mother of kids on the spectrum, it makes me happy. Because let's be honest, Sheldon's an Aspie, right?

It's never stated outright, but it doesn't have to be. He's clearly an Aspie, and more power to the writers for never deciding that he had to be something else.

The show Parenthood has tried to be really educational about Asperger's, but I have to say, I have some issues with the way it's been portrayed.

It bothers me that Max (an adolescent boy) never seems to learn new skills that help him navigate his world more easily. Lots of kids with Spectrum issues, learn things that make it easier for them.

And what the hell with his mother? Christina is freaking Judgy McJudgerson about anyone who is different. She doesn't like the new girl at her son's school because she doesn't care much about being polite, and has no desire to conform.

But in a school that Christina supposedly created for kids like her son, you'd think she would expect kids who say exactly what they think without a filter. That's a pretty common theme among spectrum kids. And while this girl isn't supposed to be an Aspie, she certainly isn't a Normie, either.

More than that, though, I'm bothered by how Christina has dealt with the fact that her son has a crush on the New Girl. She decides that they need to "temper his enthusiasm".

Let me be clear, I'm a big believer that as a parent, our job is not to temper their enthusiasm, especially when it comes to relationships. Best case scenario, you're right, and they do get hurt.

Congratulations. I'll bet you feel just amazing about being right. Take a moment to enjoy that your child is sad, and that means you're right.

Seems kinda crappy, doesn't it? I think so too.

You can't keep them from getting hurt. You can't. That's life. All you will do is undermine their self-confidence when you try. And for what?

On the show, the character tries to explain to her son that the girl might not like him back. And to her husband she expresses an unwillingness to believe that the girl even could like her son.

That really really bothered me.

She is supposed to be this super-accepting and amazing mom who is going out of her way to change the world for her child. But she doesn't think a girl could like him? Are you kidding me?

My kids run the gamut of abilities, strengths, and interests. I believe each of them can be loved. I mean I love them. Why wouldn't someone else?

But at the end of the day, whether someone likes my kid or not, my children should always know that I think they're likable and lovable, that I'm on their side, and that when their hearts are broken, I've got the glue.

Of course it's well hidden and out of reach, because it is amazing what kids can do with glue when your back is turned.

But I have it!

And that's my job. I'm the fixer.Or at the very least, I'm the really good listener who can buy ice cream.

Besides, if Sheldon Cooper can have a girlfriend, there is hope for everyone.

*****
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Liar, Liar, Pants on Fire

I know this will be shocking to all of you, but let me tell you something: sometimes kids lie.

I know! It surprised me too. I mean, those precious little cherubs?  But, yeah, it's true.

Now, not all the time. And not all kids, I think. But it's not a learned behavior. It's instinctive.

My oldest doesn't bother even trying to lie anymore. He's learned that it doesn't work. I can smell his bullshit from a mile away. He knows that he might as well just save it. Especially since taking responsibility will always go better for him.

See, you may be in trouble for doing whatever it was. But if you make me waste more time wading through your bullshit pile to get to the truth, then I'm only going to be madder about it. And that never bodes well for the kid in question.

Still, being able to tell (at least most of the time) when my kids are lying to me, doesn't mean they never try. And it's always ridiculously frustrating.

I mean, I can deal with problems, but I can't deal with problems that no one will admit exist.

I'm pretty sure Ciaran lied to me tonight. And about something that I consider serious. So now, new plans are in place to stay a step ahead of him, and I've emailed his school staff to see about setting up new social stories and systems that will help him learn about the importance of telling the truth, as well as how to stay safe.

But really? Ciaran is going to start lying to me now? I mean one of the nice advantages of his Autism has always been his ruthless honesty! No fair to lose that!

I call shenanigans on losing that.

It seems just when I've gotten it through to one that honesty is the thing that will save them, another one gets the bright idea to cover their asses with damn dirty lies.

I mean, seriously, I'm on their side. How can I help? How can I teach? How can I correct, if they're not honest?

Getting them to understand that idea, that I'm on their side, is pretty invaluable in teaching them, really.

See, no matter what, even when they're wrong, I have to be on their side, helping them to get right, or make things right. Being on their side doesn't mean agreeing with what they do, or defending it, or telling them it's okay. It just means supporting them in fixing it, whatever it takes.

That's how they learn to trust us to help, even when they know they're wrong. It takes time, and it doesn't happen overnight. But it does happen.

I'm annoyed as hell that I have to do this with the one child I thought would skip that whole thing. But hey, challenge accepted, Ciaran.

Challenge Accepted.


*****
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Look Out, It's Funky Kong

I know what you're thinking, but your eyes do not deceive you. That is in fact, Funky Kong.

With just a simple shirt on his head, and a pair of sunglasses he stole from his dad, Ciaran has transformed himself from simple 8 year old boy, to giant gorilla, with, um,  rhythm?

As Funky Kong he can sing, he can dance, and most importantly, he can play video games while rocking from side to side. Are you jealous yet?

Now, I'll take a minute and be honest here, I'm not sure where Funky Kong came from or why.

I don't know what the point of Funky Kong is, or why Ciaran is fascinated by becoming him.

So, I guess I'll just let this one go, and hope that Funky Kong can teach Ciaran a few things. What, I'm not really sure. I mean it's clear the persona makes the kid happy. And a happy Ciaran is a happy everyone.

We never know what's next for Ciaran, and what can start as a harmless interest, can quickly spiral into an obnoxious obsession that drives us all to the brink of insanity, where it then leaves us dangling by our fingernails while Ciaran stands on the ledge above singing songs at us from South Park. And all I can think is, where did he see South Park?

But such is the life with the ever-fascinating Ciaran boy. Light of our lives, cream in our coffee, and the laces on our straight jackets, where would we be without him?

Enjoy tonight's picture of Funky Kong, everyone. He's our new favorite character. Well, after Ciaran, of course.

*****
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Motherhood: It's Not A Competition

Liam did a couple of really wonderful things today.

He told his daddy, "I lub you" clear as a bell. And later, when he wanted to try my glass of wine, he said "Uh wan sum". Liam learning 3 word sentences and using them appropriately is huge news for him, seriously.

That got me thinking about how raising a kid with special needs isn't like a movie where you build up to a climax and then everything works out. It's a series of successes and failures.

I had this whole blog post planned.... But then I went looking for an image for the post.

And I found the one above.

Moms, this is what is wrong with us.

Motherhood is not a damn competition.

There aren't points for natural birth (or birth at all). There aren't points for how many kids you have. There aren't points for crunchy living, or attachment parenting. And there sure as hell aren't points for having kids with special needs.

My kids are all special. Some of them are special for different reasons, but they're all special to me. And they make me better, sure, but not better than other moms. They make me a better me.

We all have a superhuman love for our kids. We all do more in a day that people realize. We all put aside our own wants and needs to meet the needs of our babies.

Our challenges may vary, but it's a damn hard job for everyone.

I can't stop people from making memes like that.

I can't stop people from treating both parenting choices and circumstances beyond their control, like levels in a game I never got the rules to.

But as for me? I'm going to try to encourage and support.

I'm going to recognize that I'm not better than anyone else.

And I'm going to keep treating this whole motherhood gig, like something we're all in, together.

*****
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Liam's Latest Challenge

Liam had a well child visit, today.

I was able to explain things like, why his hair is so long at this point that it's unruly.

He screams and fights the clippers so hard (and he fights scissors, too, so no one wants to use them on him) that we can't bear to cut it. Also, it hides the big bump on his forehead from where he bangs his head.

Liam is big enough these days. And he's still doing so much better than he could have. After all, he gets up every morning and breathes in and out. He walks, and he even has some words. He doesn't have terrible seizures, or many of the other health problems that other kids with an encephalocele or hydrocephalus often have.

But he failed the developmental test. And in such a way that our Pediatrician wondered if he might also be on the Autism Spectrum.

Now, please don't get me wrong. I don't care if he has Autism. Whatever label best unlocks the tools that will help make his life easier, I'm all for. And there's also a significant chance that the developmental delays are due only to his encephalocele and subsequent hydrocephalus.

But I realized that I see Liam from the bottom up. I look at him from what the worst could have been. So, in my mind, he's a damn Rock Star. And everyone should just say that he's amazing. Which, I realize is not our Pediatrician's job, and yet something she likely would say if I asked her. Because she knows what could have been, too.

The thing is, sometimes I forget that the world will look at him from the top down, from where other kids his age are, and they will see how far behind he is.

So, tomorrow begins the next journey of new doctors visits and evaluations for a whole set of new ideas and treatments that might help him catch up or adapt in whatever ways will be helpful. And I'm equal parts sorry that he needs them, and grateful that they exist.

I don't know that I will ever stop looking at Liam from the bottom up, or being disappointed when I am reminded of what he can't do. Just like I will never stop loving him so much, it hurts, and being so proud of his ruthless determination to do the things he believes are important.

Parenting is full of these push-pull moments. I will do my best to keep embracing gratitude. That said, sometimes it blows that he has to struggle so hard.

*****
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Spectrum Saturdays: We Went Shopping. Together. And It Was Okay.

I went shopping with three little boys today. Ciaran (8), Quinn (6), and Brennan (4) all accompanied me to Target to do the last of the school supplies shopping.

This is not an everyday occurrence, as I usually consider shopping to be "my time". But today I thought it would be good for the boys to get out of the house, and maybe if I took them out, then the big kids could clean up a little. Nothing big, you know, just the garbage that people keep leaving on my floor. Because being no more than 20 feet from a trash can almost at all times, is still just too much. It's my fault really. I should fashion trash cans for them to wear.

There was a lot of walking around. And things were said. Things like,

"No, stand behind me. Why? Because I don't want to run you over with the cart. I'm still hoping for Mother of the Year, and plowing you down at Target will completely derail my chances."

And...

"Ciaran, Oobi eyes are not an essential school supply"

By the end of the trip, I found myself contemplating if they're squirrely while shopping because I rarely take them, or if I rarely take them, because they're squirrely. It's a toss up.

We did lay down some ground rules.

1. Don't take toys to Target
2. No singing in the store
3. No touching stuff
4. I'm not here to buy you all the things you want. I'm just here to get school supplies. 

Anyone want to hazard a guess as to how many of those rules were followed? Hint. It's Zero.

I will say that taking Ciaran to a store these days, is much easier than it was when he was little. He didn't freak out at all the people, he tried really hard to follow my directions, and he was really grateful for what he got. Like a vanilla drink from the Starbucks, and a cookie at the Deli. They were great at the Starbucks, by the way. They took the one drink I ordered for the boys to share, and put it in three separate cups with whipped cream on each. 

Life with Autism isn't always simple. I'm always looking for ways to teach Ciaran new skills. But it's not always hard, either. There are also days like this where it's just fun, and the challenge is just that he's an 8 year old boy. I love that.

*****

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Spectrum Saturdays: End Of Summer Fever

Another Saturday here.

My twelve year old daughter made breakfast this morning and let me lay in bed a little longer than usual.

Not that it let me sleep, of course. The dog's incessant bored barking has been a problem over the last few days. And of course Ciaran is getting the End Of Summer Fever.

Let me explain.

Ciaran started school at 2 1/2.  Young, right? But it was a special half-day program for kids with Autism. It was so good for him!

He thrived in that structured environment.

I want to point out that he thrived, because a lot of moms and dads new to the diagnosis, are terrified of sending them to school.  And why wouldn't you be? If your child has trouble communicating, you've spent their whole life making sure that their needs are met and that they're understood, when they can't do that for themselves. Trusting someone else with that responsibility is huge and scary. So, again, I want to tell you that my son came alive in a new way, when he went to school.

I've learned to be organized, because I'm running a big family, and if I weren't organized, I'd lose my mind. But it's not my natural state of being, and it's not really how I run my day. We do a lot of child-led activities in our house. Which I think is a fancy way of saying I totally blow as a mom who plans stuff. It's just how we roll. Unfortunately, that doesn't suit Ciaran really well.  And as hard as I try to provide him more structure, I can not compare to what they offer him in his classroom.

Ciaran doesn't like school breaks at all. For a while, he would ask to go to school on Saturdays. The weekends would bother him. I mean, come on! Lazy teachers, taking the weekend off! Didn't they know that Ciaran needed them? So, needless to say, Summer is particularly difficult in terms of change in his routine.

Lucky for us, he gets about five weeks of a Summer program, but that still leaves a lot of Summer to be filled.

That is at least two solids months of trouble to be found. I'm really not kidding with that. The latest thing has been sneaking my car keys and climbing in the van. He hasn't done anything more than that, but I'm looking for new places to hide my keys and maybe the van.

Most of his life, I have have spent figuring out what the new thing was that he was going to do, and learning how to stop him before he really gets hurt.

It's like being the parent to a tiny, unintentional, super-villain. 

Summer is particularly rough for that, both because he has so much time, and because the weather is fantastic out. He's just not capable of quite as much mischief when it's twenty below. When The End of Summer Fever sets in, the screaming to talking ratio changes dramatically, and with a couple of Aspies in the house who really can't stand screaming, you can imagine how well this goes over. He's also coming in frequently for physical contact with me.  Sort of like, frequent needy, clingy hugs. While I love the affection, and do not want to understate how much I appreciate that my kid is affectionate, I can get a little touched out as the day wears on.

At this point, he can't wait to go back to school, and see his teacher again. And if I'm honest, neither can I. Because he gets so much of what he needs there, and I get a break. When he's in school, the time we have together isn't my figuring out how to keep him occupied and out of trouble, it's spent really enjoying each other.

In other news, to the creators of Annoying Orange, I hate you with the fiery passion of a thousand burning suns.  May the fleas of ten thousand camels infest in your armpits. Because Ciaran loves you, and he's quoting the show incessantly. Turns out the name Annoying Orange wasn't chosen without reason. It totally lives up to expectations.


*****

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Gratitude First

I'll bet you know that people can be assholes. I'll bet you've experienced it at least once in your life.  Maybe even twice.

Sometimes, I've met them in person.

"Are they all yours?  Well, better you than me." they say.  Not like I have a beautiful family and am so lucky, but more like I have a visible case of herpes.

Thanks, Rude Stranger!

I should start handing out cards to them.  They'll say things like: They're all mine. I know what caused it. I still do that. I love them. I'm not sorry they're all here. No I'm not having more, stranger I've never met before. And yes, I delivered all but one of them vaginally.  Would you also like to see my scar?

Seriously, the things people think are their business are mind boggling.

But I've found another area where people are assholes: When you have kids who are disabled.

People on the street will stop and ask you "what's wrong" with your child. People will stop and stare if your child is acting unusually in public. People might try to guess diagnoses. And they talk about some diagnoses as if they're shameful. People will ask you what therapies you're using. And did you know that their sisters-best-friends-cousin totally used this special diet and CURED their child's Autism?  Yeah, you should try that.

Well, thank you, again, rude stranger on the street, for explaining to me how I should be treating my child's Autism, something I don't treat like a disease.  I sure do appreciate how you know so much when you have zero personal experience at all.

I have a friend whose son has a rare form of Dwarfism.  And get this, people will stop and take his picture on the street. I want anyone reading this to imagine being out with their child, and someone stops to take their picture without so much as introducing themselves. Imagine having to struggle every day between the desire to protect your child from unwanted attention, and the desire to give him a normal life and teach him how to cope with the fact that there are assholes, just walking the streets like normal people.

But here's the thing, Rude Stranger, We have a ton of gratitude that you have missed entirely.

Here's what I wish the really Rude Stranger could understand:

We're grateful for the people who care about us, and our kids, both with special and typical needs.

It's not "too bad" our kids are disabled. We know, having lived in this community, how many people wake up every morning with aching arms and hollow hearts. We're grateful that our children are breathing this morning. Everything else, is gravy.

There's nothing "wrong" with them. They may have different things that they will struggle with as they grow up, but we have learned that they are their own kind of perfect. And we are happy for every little thing they do, even if it seems simple by your standards.

We may struggle sometimes. We may at some point cry for the children we didn't have, and the experiences we won't get with them. But at the same time, we became mothers we didn't know we could be, and have incredible children for whom we are grateful each and every day. Even if sometimes, by the end of those days we are tired in a way that would make a first-time mom with a newborn feel downright well-rested.

You don't need to feel sorry for us, or for our kids, who often find more joy in something simple, than we can in our whole day.  No, no pity needed at all.

What we could use though, is to hear that you see the beauty in our kids. That you love their sweet smiles as much as we do. That you appreciate their gestures of friendship and affection.

We could use cheerleaders who get excited with us for new milestones reached.

And most of all, we could really use you remembering that these are our babies.  Because, Rude Stranger, when you say something thoughtless, or even downright unkind, our children might not notice at all.  But we do, and we ache.

We also want to punch you in the throat.

I'm grateful for all the amazing things my kids did today, even if it was a rough morning. And I'm grateful that I'm surrounded by thoughtful caring people, and not assholes. And that the Rude Stranger is not an everyday occurrence.

Spectrum Saturdays: Autism Screams

It's not every day I want to run away from home to Starbucks. But when I do, I usually want to add whiskey to my coffee.  Or maybe coffee to my whiskey?

Today was one of those days. And, since it's Saturday, and I blog about Autism on Saturdays, I decided to write about one of my least favorite things: screaming.

Screaming is, for a lot of us, a fact of life.  And we deal with it, each in our own way.  Not all of us with whiskey.  At least not all the time.

As I'm sure all of you know (because we ASD parents won't shut up about it) the spectrum is vast, and no two kids are the same on it.  Not even all of our kids scream.  If yours don't, go hug them right now and say thank you.  I'll wait....

Okay.  So, kids scream for a whole host of reasons. Some kids scream because they have a low pain tolerance. Some kids scream because they like the sound of their own voice when they do it. Some kids scream because they're trying to get attention. Ciaran screams to regulate himself and when he's overwhelmed.

I'm a big believer in the idea that things Autistic kids do, as long as it works and isn't hurting themselves or others, is fine.  But screaming really bothers me, and it doesn't help him.  He could scream for half an hour or more, and still be wound as tight as when he started.  And let me tell you, that's pretty tightly wound.

There are a lot of ways to handle screaming.  You can ignore it, you can do time out, you can redirect. Those methods are fine, especially if they work.  They don't usually work with Ciaran and his screaming.

For Ciaran, I have to look at the reasons he's screaming and how to fix them if I can.  Sometimes he just needs deep pressure.  He lays down on my bed and I put a big pillow on him and partially lay on top of him, until he can calm down.  I'm always very aware of how much pressure I use and making sure his breathing is not inhibited in any way.  Just like with everything, you have to be safe, and I don't want some yahoo thinking I'm suffocating my child or something.  If his tantrum is mild, sometimes I can get him to hug me really hard, and that works, too.  Added bonus, I get a hug, and I really love Ciaran hugs.

If you have a child with Autism, you probably already know all this stuff.  If you don't have a child with Autism, I'm sure witnessing this can be really overwhelming for you, too.  And, the knee-jerk reaction is to feel like it's a behavior issue.

I promise you, screaming is not a behavioral issue. 

It isn't that this kid is spoiled and awful.  It isn't that they're trying to drive everyone crazy on purpose.  It's that, for kids with Autism, the whole world is huge and really overwhelming.  When I think about it too hard, my heart hurts.  My job, and it can be done, is to help give him all the tools he needs, so he won't always feel like that.  That is a very long process.  Patience is required by me, and for me and him both.

When there are genuinely stressful or overwhelming circumstances, it makes him feel like he's in fight-or-flight mode.  He screams to block it all out, he screams because he can't think of how to communicate what he needs, and he screams in the hopes that someone can make it right for him.

As the adults, we can make it right for him.  This morning when Ciaran screamed, I couldn't immediately fix the problem.  He'd hit a sibling, the sibling had hit back, and Ciaran was all freaked out over it.  He hits because he can't think of what he should say, but his siblings don't completely understand this yet, and I can understand why they don't want to just sit and take it.  I encourage them to come to me with problems like that, but as I'm sure you'll all be shocked to know, sometimes small children would rather hit back than come to their mom.

After giving Ciaran a safe space to calm down, and trying to ignore the screaming (which wasn't working), we went to deep pressure, which finally helped him get back into a good zone for him. But of course my head felt like a racehorse had stomped on it. It still does, a little.

After it was all over, I definitely wanted coffee. And I definitely wanted it spiked.

I settled for non-spiked.  Because before noon on a Saturday, I just couldn't do.  Yeah, I know, responsible mom standards blow sometimes.

Please know that understanding why kids with Autism do the things they do, is helpful to us as parents and caregivers who can get more support and less criticism (seriously, never do I want to punch people in the throat more, than when they have zero experience with Autism, but want to tell me exactly what to do with Ciaran), and it's helpful to our kids who will experience a lot more tolerance and understanding that comes with people being educated about it.

If you know someone who is dealing with a screamer, give them an extra hug.  Because it overwhelms us too, sometimes. We love our kids.  It hurts to see them screaming like that, to know that there is something wrong and that we have to figure out how to help.

Spectrum Saturdays: Autism on Vacation

Bridget just peered over my shoulder, "Whatcha writing about?"

"Vacationing with Autism," I answered, like I'm totally sure of that title.  "Don't you want to vacation with Autism?  'Cause it's cool?"

"No." She looked at me as if I'd grown a second head.  To be fair, looking at me that way is common because A) she's 10 an B) I'm sometimes a little weird. Of course I think I'm a delight.

But we do, vacation with Autism, I mean.  We do everything with Autism.  And we wouldn't have it any other way.

That said, taking a child with Autism anywhere you've never been before, is somewhat...anxiety producing.  Will they love it?  Will they hate it?  Will they scream?  Who the hell knows?  It's a toss up. So, imagine my incredible surprise, when Ciaran fell in love with our vacation house.  The boy seriously could not have been happier there.  He ran in the grass, he took walks, he went to the clubhouse.  He swam in a damn lake.  Like a fish, too.  No one was more surprised by that than me.  
There are a few things I planned, in order to make the trip a little easier for Ciaran.

• We took the Wii.  Since he's obsessed with it, and it's hard to keep an Autistic kid from whatever he's perseverating on, we just included it in our vacation.  It's not always possible, but when it is, it's worth it.
• I brought some toys I knew he loved.  In fact, I let him pick them out.  
• I planned meals that I knew he'd eat.
• I planned some things for him to do in the car, none of which he did, because...who knows.

One thing that we've been having an issue with, and was a vacation concern, is bedwetting.  I tried just giving up on overnight pull-up type things for bigger kids.  Nothing was working for him.  They were too big, too small, and they all leaked.  Why bother spending money on these things if you're still going to end up with a wet bed in the morning?  And maybe he was just wetting the bed because he thought the pull-up meant he could.

Giving up on pull-ups was a big, fat, failure.  But since the pull-ups were a big fat failure too, at least I wasn't out the money for them.  But we were going on vacation, staying in a vacation house that wasn't ours.  I did NOT want him wetting the bed there.  I went to the store to really look at the options, and I found GoodNights Tru-Fit Underwear. (Full disclosure: I bought them with my own money, and have received nothing from Kimberly Clark for this quick review.  They don't know me at all.)  These things are great!  They're like real underwear, but with a PUL pouch inside for a pad insert.  The pouch stays close to the body, is waterproof, and is gusseted to keep the wet in.  But outside they look like any other brief underpant.  They worked!  There were no leaks, no mess, and Ciaran loved them.  He liked wearing underwear to bed, and he liked not waking up in his own urine.  Who can blame him?  I'm not a big fan of it, either.

There are a lot of things that are hard for Ciaran.  But he took genuine, deep joy, in being away for this vacation.  He literally cried when it was time to come home, because he was so happy there.  And while that didn't stop me from running around like a crazy person this morning, packing up my giant family while trying not to spook the stray dog outside our house, it did make me really happy to know that he'd enjoyed our getaway as much as I did.  Autism can not keep us from living our lives.  We may have to make accommodations to make things easier for our kids, but we are not going to hide away from the world.  

Well, tonight I'm going to hide away from the world.  I'm exhausted.  I need a vacation from vacation now!

So, Your Child Has Autism

When I was ten, the movie Rain Man came out. Like many of us who saw that movie, it was our first introduction to Autism. Even years later when my nephew was diagnosed, I didn't really understand what Autism was. As close as I understood, it was a diagnosis that required people to live dependent on others for the rest of their lives. It was a really scary thing.

Then it happened to us.

Reagan was the first to be diagnosed with Aspergers. Then Ciaran with Autism Spectrum Disorder. Then Piper with Aspergers.

When I got the first diagnosis, I cried. What did this mean for my kid? For us? I felt like we were something different, and it was going to change our whole identity. For a while, I think it did. But it didn't have to. And it doesn't for you, either.

I've met several people, recently, who've asked me about having a child on the Spectrum. Advice? Wisdom? Something useful? I get it, I do. It's like being thrown into the deep end of the pool, and you want to do the right thing, because your child's future depends on you navigating the water properly. But, you don't know exactly what you should do.  But hey, no pressure.

It's terrifying.

Here's what I wish someone had told me:

• There is nothing wrong with your child.  He or she is wired a bit differently than other kids. It creates some challenges, to be sure. But it also creates people who see the world in a distinct and unique way  We need people who can bring that perspective to the world. They make us better.
• Those challenges can make you crazy, but try to keep perspective. Every kid, Autistic or Neuro-typical, needs to learn skills to navigate the world easier. An Autistic child will just need a different set of skills. But I promise you, they can be learned and taught. Don't let it scare you.
• Your child is a gift. You really already know that, but with all the talk about therapy and what they need, you can get lost in the fear and uncertainty. It can feel like all people see when they look at your child, is the Autism. So let me tell you again, that your child is an amazing gift. They're perfect. They were perfect yesterday, they're perfect today, and they'll be perfect tomorrow. Hear me? Perfect, little, learning people. Or at least, perfect in their imperfection. Just like all of us.
• Our kids are honest. They will tell you what they think, and you will always know where you stand. Sometimes you'll need to have a thick skin, and not let things bother you. Sometimes you'll set boundaries and teach them that they have to be careful about their words. These are good lessons for them, but seriously, pick your battles.
• Sometimes our job is to teach our kids how to navigate the world. Sometimes our job is educating the world about our kids. Spectrum kids will always be who they are. We have to teach other people how special they are, and how to understand them. Which brings me to my next thought:
• This is controversial, but I do not believe in finding a cure. This is a neurological condition, and is part of who our kids are. My children are Autistic. It's not bad. It's not something that happened to them. I don't think we need to cure it or fix it. I think we have to parent them with love and acceptance, keep teaching them how to self-advocate, and we need to keep teaching the world that they're not broken, they're special.  
• I have learned to be distrustful of any organization (for example Autism Speaks) that treats Autism like a burden, that sells parents a pack of fear, and makes Autism sound like a terrible thing that has happened to our families. Remember, there's nothing wrong with your child. They're perfect.

It's going to hurt, sometimes, when we take our child to a class, or a group, and they don't do what the other kids do, or enjoy what the other kids enjoy. It will feel like they're missing out on something. But they don't think they are.  hat's all us. They're fine. They're already thinking about something else. And the things they perseverate on, can be absolutely fascinating. Ask Piper to tell you about Sonic the Hedgehog sometime. You will learn more than you ever wanted to know. Including how there's a Sonic the Hedgehog protein. Seriously.  

You already love them, so above all, keep doing that. If there's something else you'd like me to address, or questions you have, feel free to share/ask.  

Our History

What this blog is for, has changed in the nine years I've been writing it. For a while it was a log of what we were doing as a homeschooling family. For a while it was following where I was in terms of my life and faith. But all along it's been a place where I've recorded the stories of my family. What makes us...us. There are a thousand things our kids do that make us crazy, or make us laugh, and the truth is we'll forget most of it. But every so often I can look through back posts here, and remember moments that would have been lost forever if I hadn't written them down.

 Reagan is 15 years old now. A Sophmore in High School, and an awesome kid. We banter a lot. It would look odd, I think, to people who don't know us, but we make each other laugh almost constantly when we're together. He's not ashamed of me. In fact, we're actually really close.  His idea of a fun evening is hanging out with his friends and playing video games.  So far he is not paying me back for the kind of teenager I was.  But I'm sure someone else will...

 Piper is 10 now. When I started this blog, she was still a baby. She's sensitive and has some of the issues with socialization and organization that we found with Reagan at the same age. She's got such a big heart, though. I struggle with wanting to protect it from everything, and trying to trust that it's big enough to survive the world.

 Bridget is 8. Her birth was a blog post in February of 2004. My first blog-baby. She's kind of sensitive, but a lot tougher than Piper. She gets so sick of being the little sister. She's smart and capable, but we're finding we have to push her to really make her reach for her potential. She has an awesome teacher this year who will not let her get away with anything.  Between her and me Bridget is going to learn and accomplish a lot.

Ciaran is 6.  My rainbow baby is sometimes the one I worry most about.  I know that there are plenty of functionally Autistic adults.  But I can't see the future, and Ciaran is, in so many ways, still a mystery to me.  I can't get behind his eyes the way I can with my other kids.  I do a lot of following his lead and hoping he'll show me what I need to know.

Quinn will be 5 next month, and he's desperate to read.  We've started Teach Your Child To Read in 100 Easy Lessons, and he loves it.  He's kind of bossy, but also very loving and sweet.  I think sometimes he feels he has to be the responsible one, since Ciaran isn't.

Brennan is 3, and he's our family joker.  I vote him most-likely-to-become-a-stand-up-comedian.  That kid will do anything to make you laugh, and if you do laugh, he'll do it again and again, cracking himself up in the process.  His smile is infectious.  He sometimes gets away with more than he should because the cute is too much.  But it never saves him when he wants it to.

Liam is 16 months old.  Wow.  He smiles and laughs and is addicted to patty-cake.  I am his monkey, and when he sees me he starts clapping and won't stop till I do it with him.  Me?  I'm a sucker and now do patty-cake probably 100 times a day.  There are things he's not doing.  Things I'm sure we'll need to work on.  But he's here.  He's here and he sees and he's not having seizures like a lot of babies do after encephalocele removal.  So, anything he does means more to me.  Each new skill is a triumph over the fact that he shouldn't even be here.  They say that only 1 in 5 babies with an encephalocele makes it to birth and that 75% of those are profoundly delayed.  But without the surgical techniques which have been developed over the last century, and without the shunts which were only invented in the 50s, an encephalocele would be 100% fatal, and if not the 'cele, surely the hydrocephalus.  So, he doesn't walk yet, and he's not talking.  But he plays patty-cake with me, and sometimes that alone makes me want to cry for joy.

Dominic has lost about 45 lbs. in the last few months and is working really hard on becoming healthy so he can stay around and help my with our crazy circus.  I'm so grateful and in love with my husband.

This is a snapshot of my family, and where they are right now.  I wonder how it will change, even in just a year...

 

Normal Kids

I don't have normal kids.  Even if I didn't have some kids with special needs, I don't think my kids would ever be normal.  We're different, and that's okay.  I fought being different for the longest time.  Because, among kids, to be different makes you an object to be spurned and rejected.  Who wants that?  But eventually I learned to embrace what made me different.  And maybe I was never cool, or as cool as I wanted to be.  I'm still not.  But I am happy.  That makes up for a lot.

I don't worry so much for my kids who don't have special needs.  They will struggle, but they will find their way eventually.  And I hope they do so with a lot of help from me.  But what about Ciaran?  What about Liam?  I'm more worried about Ciaran at the moment, since the jury is still out on how severely impaired Liam will be thanks to that pesky encephalocele.  But here is my Ciaran, with all his pieces, growing normally, and yet, so different.  Will kids be able to look past his answering questions with lines from TV shows?  Will they understand when he doesn't get their jokes?  Will they be nice to him even though he is so different from them?

He's not a baby anymore.  And the kids who were playful and sweet a few years ago, won't stay that way forever.  I wonder what names they'll call him, and if it will hurt his feelings as much as it will mine?  I wonder, even as I work on how to encourage socially appropriate behavior, what the world will be like for Ciaran (and Liam too) as they grow older.  I wish I could protect my babies forever.  Sometimes I am both frustrated and sad that I can't.

Thanks, Kid

Any mother knows that a kid with a bad habit, can make you long for a good stiff drink before 9 o'clock in the morning. My favorite, at the moment, is door kicking. Ciaran, because of his Autism, has a hard time expressing himself verbally. So, when there is something he doesn't like, a door that is locked, or something that is frustrating him, he kicks doors. It's loud, it's obnoxious, it wakes babies, and it makes me wish there were a way to pad the walls.

Now, usually, younger kids emulate older ones as they mature and grow.  But what happens when the older brother is Autistic?  Exactly what you would think.  I just put Brennan down for a nap, like we do every day, and he's responded by screaming and, you guessed it, kicking the door.

The good news is that these habits are so much easier to end in a neurotypical child.  Brennan responds appropriately to counting and time-out.  But, of course, as they leave these bad habits behind, they get upset that Ciaran doesn't.  And how exactly do you explain that he can't?  That the things that taught them how to behave, won't work for Ciaran?  Actually, that's not entirely true.  I can explain it.  I just don't know how to make them understand it.  More than that, I don't know how to make them not resent him.  Ciaran can do something that would earn them a time-out, and I don't give him one.  Granted, I handle it another way, but time-outs aren't effective for Ciaran.  It's not fair.  But it is appropriate.

I hope eventually they'll understand that I try to do, for each of them, what works and what they need.  Each of them have their own set of challenges and strengths, and it's my job to know who needs what.  I love each of them so much.  I hope open communication and love will make up for the things I can't change.

What Will the Neighbors Think?

Well, between the Coexist and pentacle bumper stickers on the van, and the seven kids in the house, I'm pretty sure the neighbors already think we're nuts. But I'm a bit more concerned than usual about what people might think of us.  Let me rephrase that.  I'm kind of worried that my wonderful, precious son is going to give the impression that he's being threatened at home.

Thanks to Piper, Ciaran has discovered what may possibly be the worst series on the internet.  And if you've spent more than five minutes traversing the web, you know that's not a mild statement.  It is, The Annoying Orange:

I would rather poke needles in my eyes than watch this web series.  So, of course, Ciaran has memorized it. 

Thanks to the butcher knife in this and a few other episodes, we've had to lock ours up to prevent him from trying to get it.  With his Autism he has zero sense of danger.  And in one episode a character says "If you say that one more time, I swear I'm gonna hurt you." which he's taken to repeating along with other parts of the show. 

Now, when I say he's taken to repeating it, I mean he parrots it constantly until you'd like to shove cotton in your ears and see if it might possibly be legal to tape a kids mouth shut.  Now, Ciaran doesn't tend to be violent, but I'm scared to death he's going to say that line about "I'm gonna hurt you" at school and someone is going to think that's the kind of thing we say.  

We don't, by the way.  

I'm suddenly feeling very grateful that those working with Ciaran know both him and us very very well.  And I'm also grateful for the parental controls on Windows.  Now when he goes to his page, he can see ABCMouse.com and nothing else that I haven't authorized.  That kid is wicked smart.  He'll type anything into the search box, wait until google pulls up videos, then gets to You Tube, and from there, to The Annoying Orange.  

Who says the web can't be a tool for evil?

And, as an aside, over the years I've had an amazing amount of interest in the decisions that my family makes.  I understand.  I write a blog.  I share my life with the public at large.  And I have comments.  So that must mean I want everyone's input in everything from what kind of coffee I should drink to how big my family should be.  The thing is, I actually care very little if the anonymous commenter (because people rarely choose to be assholes under their real name) thinks I should be using more birth control, or I'm destroying the planet with my horde of kids (seriously, shouldn't Michelle Dugger get a talking to before me?), or thinks I'm going straight to hell without the love of Jesus (I happen to think Jesus is pretty awesome, just for the record).  

I don't publish anonymous comments as a general rule.  There are some exceptions.  Like if you add your name in the post, or you know, are nice.

I also think if you've got all the answers, you should go apply them to your own life and let me worry about me.   The internet can be an amazing source of support and comfort.  But I learned when Sarah died that it can also be a place to be badly beaten up.  Some people think you should take the good and the bad.  But I've decided to only take the good.  And I can do that.  Because it's my blog.  

Mommy Dearest

Earlier today Ciaran came home from school.  My just-turned-six-years-old-on-Tuesday boy came in, demanded my tablet so he could play Angry Birds (I said no), sang a song, then went into the playroom with his brothers where he immediately peed his pants and stripped naked.  Welcome home, Ciaran.

He peed his pants twice this evening.  In my mind I could see what I'd like to do.  Like Mommy Dearest with the wire hangers, I wanted to smack him with his own wet pants.  Can't he see how crazy it makes me when he does this?  On purpose?  When he knows how to use the toilet?

No.  Of course he can't.  Autism has many things that make kids truly special, but one of the drawbacks is that he has trouble seeing anything from my perspective.  I count it a minor miracle that he'll say sorry if he thinks he's stepped on my foot.  After all, it didn't hurt him, and he didn't mean to, so why should he be sorry?

So, I can't act like that.  Not that I would even if he didn't have Autism.  Now, I'd be lying if I said I've always kept my cool.  I'm human.  But I'm their mom.  It's my job to love and protect them even if they're making me want to flee to the nearest girlfriend who has an open bottle of wine.  And there is a certain kind of parent that I can never be.

When I was very little, I had a caregiver who obviously didn't like children very much.  She had two of her own, and I think she loved them.  But us?  The kids who spent their days with her?  I don't think she liked us at all.  And she made us all unhappy because of it.  I can still remember how each day I'd leave her house thinking, "I like her.  I'll be extra good and maybe she'll be nice to me tomorrow."  With a child's innocence I continued to try to love her into loving me back.  But I couldn't do it.

I'm lucky.  She was just my caregiver.  And when I was in Kindergarten, she quit, and I went to daycare instead.  I think, even now, that experience colors who I am as a parent.  I want my children to respect me.  But I don't want them to fear me.  I don't want them to feel they have to earn my love.  I always want them to feel safe with me.

Tonight, Bridget has the stomach flu.  Liam is attached to me as if he were made of velcro, and sleeps only short periods if not in my bed.  Okay, he sleeps for short periods even when he's in my bed.  Piper is sleeping on the couch since her room smells like a sick Bridget.  It's probably going to be a long night.  And I'll get through it, while taking care of my kids (with the help of an awesome husband, of course).  Because that's what you do as the parent.  I know there are women out there who don't do this.  Women who abuse and neglect their children.  I will never understand them.  Ever.

 

Spectrum Saturdays: A Week In Autism

This has actually been a pretty good week.  Ciaran's language seems to be taking off again, and the things he's saying can be kind of amusing.  Things like "Knock it off, both of you!" to his dad and me.  Gee, I wonder where he might have heard that before.  

While affection is sometimes hard for kids with Autism, Ciaran has been really affectionate with his dad and me.  I know some of it is a desire for sensory input.  He likes good, long, strong hugs.  But they're still pretty wonderful, in my opinion.  He's also started to become affectionate toward my belly.  The idea that there's a baby in there is kind of abstract for a little kid whose communication skills are limited.  But he keeps pointing to my tummy, explaining that there's a baby in there, and kissing it.  

I think sometimes we Spectrum Moms take a lot our blog time  explaining how difficult it can be to do the best for our kids with Autism.  But I think it's good for people to know that we have lots of good times, too.  Weeks where our kids come along with their language, or reveal a sense of humor that's developing in a way we didn't know.  Or we find out that they have memorized all of Toy Story 3.  

Now, how do I get him to memorize his age, phone number, and address?  I wonder if I can get Buzz Lightyear to teach him...

Spectrum Saturdays: 10 Things I Wish People Knew About Raising A Kid With Autism

\\There have been some amazing lists lately about what an Autistic child wishes people knew. They address so many misunderstandings people have about how to communicate with, or understand an Autistic child.

But there are things I wish people knew about parenting an Autistic kid, and Autism in general. So, here's my list:

1. Autism is not your worst nightmare.  I'm sure those who say it mean well, (even if they're being outrageously thoughtless) but I wish they wouldn't tell me that.  First of all it makes me feel like they pity me or my kids, and second of all it misses something really important.  My Autistic kids?  They're here, with me.  They're alive.  Trust me, planning a funeral for your child, that's your worst nightmare.  Autism isn't anywhere close.
2. My son isn't a problem.  Ciaran is 5 years old, and communication is still difficult for him.  He sees and hears so much, that it's hard for him to figure out which sights and sounds deserve his attention.  It's even harder for him to communicate what he's experiencing.  That's not a behavioral issue, nor a sign of my parenting ability.
3. My son isn't stupid.  Most people realize that Reagan is smart.  He's 13 and communicates on a fairly advanced level as many Aspies do.  But Ciaran is still small.  Since his communication isn't as good as other children his age, it's easy to label him as not being very smart.  Nothing could be further from the truth.
4. There are a million and one ways out there to treat Autism.  While I'm always on the lookout for tools that will make their lives easier, I have no desire to put them or myself through hell trying to fix something that I don't think is broken.  
5. I don't speak for all parents with Autism.  Not remotely. Many of them do want to fix or cure their kids.  While my feelings are different, I have no desire to judge them or their experiences.  Life's tough enough.  I can only speak for myself, and do my best to speak for my kids.
6. I wish people talked to their kids about Autism and how to work with kids who have it.  We spend so much time teaching tolerance and diversity, and that's awesome!  But how many parents do you know who've really explained to their kids what Autism is?  We have so many children affected by this disorder, it's a virtual guarantee that your kids either already know one, or will.  If they understand it, they'll be more patient with them.  That means so much to the kids and the families living with Autism.
7. I think we're good with the Autism Awareness.  I think people understand that it's out there and affecting so many children and families. Now I want to move on to Autism Acceptance and understanding.  Just knowing what it is doesn't help people to know what it looks like, and how to be inclusive of people with Autism.
8. Socially inappropriate behavior on the part of my kid is a time for teaching.  Telling my child, "When it's Amy's turn we have to keep our hands off the toy" is so much more helpful than saying "Stop it.",  "No.", or "Time Out!".  Because he's not being bad, he just doesn't get the social nicety yet.  So I have to work with the understanding that he did it because he doesn't know better.  Trust me, when he's just choosing to do something he knows he's not allowed to do, I'll be the first to put a stop to it.  Although, again, because of his Autism, the way I handle that may not look the same as it would with a Neurotypical child. But that's okay. I know what I'm doing.
9. I have two sons who have Autsim.  While this doesn't solely define who they are, it does affect almost every aspect of their personality.  So, if I use the word Aspie, or say I have two sons who are Autistic, please don't think that I, of all people, don't understand who they are.  I do, quite well.  I both love and accept all of who they are.
10. While I don't need pity, I do often need support and understanding.  Raising kids is hard.  Raising kids with Autism has it's own set of unique challenges.  I often feel like I'm not doing enough, or not doing it right.  I need encouragement.  Especially on bad days.  

I'm grateful every single day that each of my kids is here with me.  And I hope one day that I've done well enough that they have all the tools they need to go out into the world and make their own way.  In that way, I'm just like every other mom. 

Authors note: This Spectrum Saturday post was brought to you a whole day early because the school system gave my kids Friday off, which confused me.  So, happy Spectrum Saturday/Friday!

They Don't Speak For Us: A Spectrum Saturdays Post

I've tried to write this post a bunch of times.  It just never comes out the way I want it to.  I don't want to be preachy.  Autism can be a huge pain in the ass as a parent, and I'm pretty fortunate that my kids are fairly high functioning.

But here's my deal:  I really don't like Autism Speaks.

I don't speak for the Autistic.  I don't speak for all Autistic parents.  Some days I'm lucky if I can speak for myself.  But I have to tell you, I do have issues with groups like Autism Speaks.  Why aren't there any adults with Autism on the board?  Why do they have to play on pity on fear to raise money?  Where does that money go?  Why do I feel like they're trying to marginalize my kids?

Honestly, I don't expect my kids to be "cured" of Autism.  And if I had the cure right here in my hand (which, I dont) I don't think I'd use it.  How much of my boys would I lose if I did?  How much of them is impacted by their Autism?  Which isn't to say that they are solely defined by the disorder.  Trust me, they're not.  But Autism is a part of who they are and I love who they are.  All of it.

My job is to give my kids the tools they need to navigate the world.  And they can see this world however they want to.  Today Ciaran used the toilet.  Something he does most of the time, these days.  And he made sure to lift his skirt so he didn't pee on it.  Go Ciaran!  See?  He's doing awesome!

This will not destroy me, my children, our family, or our lives.  Autism Speaks does not speak for my children, my family, or me.

Spectrum Saturdays: Autism & Alleluias (Review & Giveaway!)

I was sitting in the gym, watching Ciaran get on the swing and try one of his exercises, yet again.  I wanted so much to jump in and help him.  But that's not what his therapy is all about.  What I needed was a little time to tune it all out.  I picked up my copy of Autism & Alleluias and began to read.  That day I read about an experience the author had with a member of the Lakota Sioux tribe.  I had never heard that the Lakota believe that special needs children are sent by God to teach us compassion.  Kathleens experience was a humbling read.  What a concept!  I stopped and looked at my son who flashed me his precious smile and felt my heart melt.  
There have been many of these kinds of moments as I read Autism & Alleluias.  Over the last couple of weeks, I have had the joy of picking up this book in my spare moments.  Each chapter and poem have become like little drops of peace in my day. I now keep it next to my bed and read a little something from it regularly. It's not that Kathleen is peace personified, or has all of the answers.  She doesn't.  But she does seem to have an incredible way of finding the right perspective and communicating with God through the difficulties of daily life.
I worried that the book might be a preachy, or downplay the difficulties associated with raising Spectrum kids.  It shouldn't have worried.  Kathleen is honest about her fears, frustrations, and at times, even anger.  Anger especially is an emotion I think we women, especially women of faith, have issues with.  But Mrs. Bolduc, in her book, gives even her anger to God asking him to keep it useful instead of fruitless.  I would not only recommend the book to anyone touched by a child with Autism or special needs, I asked the publisher if I could give away a copy, and they immediately agreed!  I'm thrilled to be able to provide this book to a reader. 
So, here's the scoop: leave me a comment and that will be an entry to the giveaway.  For extra entries, tweet, Facebook, or blog about this give-away.  Leave an additional comment for any additional entries.  The contest will close Friday at 11pm and I'll announce the winner (chosen by random selection) next Saturday in my next Spectrum Saturdays post.  
I am also excited to announce that Kathleen is going to be a guest poster on Muse Mama!  I'll be posting her entry separately.  She's a wonderfully personal and uplifting author, please check it out.  
For anyone interested, there is a free webinar titled "A Place Called Acceptance" which is scheduled for April 8 at 2:00 p.m. Author Kathleen Dyer Bolduc will be joined by Bill Gaventa (editor of the Journal of Religion, Disability, and Health) and Ginny Thornbugh, the program director for the Interfaith Initiative of the American Association of People with Disabilities. It should be an inspiring and informative presentation. Click here to register.
If you're interested in purchasing the book, check the links above, or I have it linked on my products page.