Thursday, May 24, 2012

What I want for my boys

About a month ago, Dave met a colleague at work who also has a son with autism. This man's son, Zach,  is 14 years old, and just the coolest kid you'd ever want to meet. Sweet. Funny. Normal.

I say that last word with a lot of respect and downright awe.

He has friends.
He can co regulate himself to the point where he has friendships with people who are not related to him.

That's what I mean when I say the word normal, and I long for the ability to have that type of relationship for my boys more than anything in the entire world.

When parents say things like, "I hate autism," or  "I wish my child was normal," I think what they really mean is more like the above statement. They want their kid to be able to make and keep a friend.

It's not that I want my child to be a totally different person. It's not that I want any of that quirkiness to go away. I just want him to be able to understand another's perspective. I want him to be able to fit in and make new friends. Not everyday. Not even every year. Just once. Just one friend. I'd start with that.

To me, that would feel like winning the lottery. Really.

I'll explain more about my new friend, Zach, and how it relates to us tomorrow.

Monday, May 21, 2012

Get Your Guy Some Headphones!!!

Cam has always been very sensitive to sound. I always knew this, so I'm surprised it took me so long to go out and get the boy some noise cancelling headphones, but it did. It took me until he was 7 to do this. So I'm posting this to let you know to go get some now.

Noise Reducing Earmuffs from the hardware store.
I bought this pair at the local Ace Hardware store for about $30, but I bet you could get them slightly cheaper someplace else. They are awesome! Here's why---

Cam doesn't have to wear them all the time. But the magic is that he controls them. If he needs them, he asks for them or runs to get them.  Truth is, after we had had them around for a month or so, he often doesn't need them.  They will sometimes go missing. But they always turn up under a pile of pillows in the playroom or under his bed.

When we went to Disney this Spring, they were a God-Send! He was able to handle those loud and scary places so much better. And they have the added bonus of being almost a sign pointing to him saying "This Child Is Special," which I appreciate. 

I know some parents may have issues with their kid being so obviously labeled as "different" and I understand that. But, if you enjoy being able to help your child achieve autonomy over his or her sensory system, look into Noise Reducing Headphones.  They really are Awesome!!!

Tuesday, May 08, 2012

Who We Are & How Did We Get Here...sort of.

My husband and I have three children: a neurotypical daughter, now age 11 and two boys, both on with Autism, now ages 9 and 7. It's been a wild ride, but I thought it might be interesting to tell our story of how we got to today, which, as I write this, it's a glorious spring day in 2012.

All my pregnancies have been uneventful to the point of complete boringness. I took my vitamins, probably ate a little too much for my own good, avoided alcohol and any recreational drugs, slept a lot for the 1st pregnancy--and, not so well for the 2nd and 3rd, but who does with multiple children?--and went into labor on or very close to the 38 week mark for each of them. My first child, my daughter, Blythe, was born on a stormy February night.

Finding my "Mommy Legs" was hard, but I thought I did okay for the first year. I struggled mightily with getting Blythie to sleep, but I obviously thought I knew what I was doing on some level because when she was 9 months old, I became pregnant with my older son, Kieran.

I guess I've always known that Kieran was wired differently, since he was born. He developed normally through most of his first year, but he was always studying things. I used to say that Kieran would visually "eat" stuff. He would look intently at books for hours, and he liked to watch tv, but only cleanly designed things; like the Baby Einstein videos or Tellytubbies (NOT the live action parts with the live children, though--he would look away or start to act bored with that stuff).

I began to sense that something was up with him when he was about a year old, and he wasn't interested in talking at all. No words. But he would perform what I jokingly called his "science experiments": watching how balls would bounce around the floor, or down the stairs, or how cars would roll. It wasn't what I thought of as "normal" toddler play, but it wasn't mindless, either. He was clearly trying to figure out how these things worked. When I would ask our Pediatrician though, I got the stock answer: "Boys are slower to develop than girls. Don't worry."  (Thank God they don't say that anymore, right? At least, I hope they don't!)

He also had a freakishly long attention span for a toddler. I can remember him playing with one of those tracking bead mazes for 45 minutes one day while we were visiting a library. Forty Five minutes! I know, I timed it--I was so perplexed. And he would have gladly stayed even longer, but we had to leave, so I dragged him, crying out of the library and away from the fascinating toy.

I finally began to truly understand something was up, though, when we went to our first Gymboree class when he was almost 14 months old. He had zero interest in the other kids. While the other children were climbing all over each other, knocking each other over and rolling balls to each other
(all without that much language, mind you) Kieran just slowly crawled about the room, completely oblivious to everyone except me.

That's when I started pushing for him to be formally assessed for delays, and when he was finally evaluated at 18 months, he tested with language at 9 months. His cognitive skills were fine, though. Above average, even, according to the Developmental Therapist who tested him. Thus began our saga to find out what was going on with Kieran. No one wanted to say he was autistic, when it was obvious that he was really quite smart and good at figuring all kinds of things out. It's only been in the past few years that research has shown just how intelligent most children with autism are, and it's not viewed as the exception to have a bright autistic child anymore.

He learned the entire alphabet in a little over two weeks, when he was about 2 1/2. And he had taught himself how to read well over 50 words by the time he was 3, but he couldn't have a conversation with anyone.

We finally got him in to see a Developmental Pediatrician when he was 3 years old (which was a saga in an of itself) and only then he did receive his formal diagnosis of Autism Spectrum Disorder.

Not long after that, I stumbled across RDI on a parent blog. Curious, I wanted to find out more, and I went to the 2-Day Introductory Seminar given by Dr. Gutstein, and finally found someone who could explain to me how and why a child who is so bright have such a hard time learning language or making friends. In fact, I vividly remember Dr. Gutstein announcing to the group that, if we only walked away with one thing from the 2-Day course, it was that we would walk away with a new understanding of what Autism is and what it isn't. I was like, "Yeah, Dude. I've read so many damn books and articles. Go for it! Teach me something I don't know."

And, well, he did and I walked away from that seminar finally understanding my son in a way that I hadn't until then and it deeply influences the way I understand and communicate autism now.  I highly recommend his books and seminars to everyone I meet in the autism world. 

We never did a formal ABA therapy plan for Kiki, but he has been in Verbal Behavior classrooms ever since he turned 3. He just finished 1st Grade in our public school district. He has a one on one aid with him the whole day, even at lunch. But he is doing grade level work, and slowly learning how to be a part of a class.

By the time we realized something was up with Kieran's development, I was pregnant with Cameron. Now, Cameron's autism in many ways seems very similar to Kieran's, but also very different. Cameron is much less verbal, but he understands what is going on around him and what is being said. Cameron loves to be around other children, and he plays with them in very basic chase games. But he does seem more affected by autism than his brother in some ways (intellectual ways) but less affected in others. You wouldn't necessarily know that Cameron has autism when you first meet him. He's not a flapper and he can follow along with a conversation going on around him. But, as he's getting older, he is falling farther and farther behind his typical peers.

And then there's Blythe, who not only had to tolerate a brother come into her perfect Blythe-centered world when she was 18months old and steal all the attention (an event which she still holds against me, to this day), but she has also tolerated therapists coming into the house several times a week to have "therapy time" which no doubt looked exactly like "play time" to her. And because she's such a dynamic force to all those around her, she had to stay away from these therapy sessions, or else they would become all about her, and not learning opportunities for Kiki or Cam.

She's watched other kids actively play with their own siblings, while hers seem to not even know she's there sometimes. And then there's the responsibility I know she feels for them: the times she's watched them for me while I shower, and stopped them from doing something dangerous or escape out the front door. I remember vividly the day when she was 4 years old and she asked me why she couldn't have normal brothers to play with, and then she broke my heart even more when she asked if it was her fault Kiki and Cam were autistic.  *big, heartfelt sigh*  I felt about 2 inches tall on that day, let me tell you.

So, that's sort of a rambling of how who we are and how I came to realize that we weren't all typically developing in our house. 

My Rant

Parenting children is hard.

This is a universally acknowledged truth.

Most people know this because they either have children, or because they know someone close to them with children. They can see just how hard it is when they visit them, or spend any amount of time with them.

Parenting children with autism is exponentially harder.

This is not necessarily news. I think most people, as especially those with children, can imagine this. 

But what is perhaps not known is just how much harder it is and how the autism manifests itself into real, everyday life.

It's like having to bring your "A" game, your absolute best every single day. If you have an "off" day, like say---maybe you just don't feel up to figuring out every detail, 8 hours ahead of time, with more than one backup plan in place, and you just want to coast a little one day, you will pay for it. 

There will be meltdowns, and tantrums, or worse...your child will figure out a way to escape out of the house and you won't realize he's gone until it's too late. (no, that last one hasn't happened to me, but it's a fear I have)

But, I'm not going to sit here and go on and on about just how hard it is. What I am going to tell you is that, until you have had the experience of parenting a child with autismyou will never know how hard it is. Like most things in life, you can imagine all you want...and perhaps you will gain new perspective from that. But the true, major learning lessons in life have to be experienced to be understood.

And what really sucks from my perspective about having two children with autism is this: dealing with people who not only think they know all about what it would be like having a child (or two) with autism, and they treat you as though you are doing it all wrong, and that they could do it better.

I know this, because I experience it whenever my In-Laws come for a visit.

And I'm done with it.

I'm done with the constant sniping little digs about how I'm "coddling the boys", I'm not "allowing them to deal with the consequences" of their actions.

The only person who really suffers from "dealing with consequences" is me. I have to pick up the pieces when one of the boys gets worked up.  I walk a fine line between pushing them harder and pulling back. Because I've pushed to hard in the past many, many times, and had to suffer those consequences all by my self. 

Autistic children do not learn things the same way that typical children do. If they did, they wouldn't be autistic, now, would they? 

It seems rather obvious, doesn't it.

Why is this so fucking hard for people to understand. Oh, because they haven't experienced it yet, you say? Oh how true.

But that doesn't stop their judgement, or glaring looks, or sighs, no matter how subtle or quiet they think they are being. I can still hear it. Really. 

When it comes to figuring out what people are not saying, I am a Jedi Fucking Master. 

And you know what, maybe I am making mistakes and doing it all wrong. Maybe I suck at this. But I'm doing the absolute best I can. Really. So why don't you get up off your judgemental ass and dig in and help me out. I mean real, get-your-hands-dirty-help me out before you let yourself think another negative thought about how I am functioning as a parent. 

If nothing else, you might just learn something.