How Do We Let the World In?

A friend and fellow ASD parent, Tina, brought up a very good point today in a comment she made about how the rest of her world handled "knowing". She mentioned that some of her friends seemed to drift away, while others don't really mention it at all.

How, when, and why do we let the world in on our diagnosis? Obviously, when behaviors get to a point, the subject cannot be avoided. Like when Olivia starts stimming over her favorite Ni Hao Kai Lan book (which she is doing right now), it is a good time to explain that she isn't having a seizure. This is just her little way of processing a big day. Such stimming has ended more than one trip to Barnes and Noble, but these days I can snap her out of it if I have to by distracting her with something else.

I will admit it. When Isaac was first diagnosed, we hesitated to tell anyone outside of family. I think we were afraid that our friends would look at us differently. FEEL SORRY FOR US. Was it pride? I am sure a little. But beyond that guttural reaction, it was because we didn't feel sorry for ourselves. It sucked, there were some tears, but by the time Isaac was finally labeled, it was more of a relief.

Okay. Now we know what is going on. What can we do now?

Now we freely talk about it. What changed? Not sure. Maybe we grew beyond our hang-ups, maybe we realized that it wasn't the end of the world. Just a minor gravitational fluctuation.

I think I will start asking, those friends of mine that I think will answer honestly.
Will post about that later.
Curious to those who are reading this...what was your experience?

And the Topic for Today's Daily Rant...

Trying not to be bitter about yet more staff cuts for Portland Public Schools. A harder subject to bear as I am preparing Isaac and myself to face the fall term. Gathering his most recent IEP reports, his recent behavior and I.Q. results from OHSU, and putting together a simple one page profile of Isaac as a person as we prepare for a new school, a new teacher, and new program. Should I include a picture or two? Laminate the thing? It's beginning to feel like a lame PowerPoint presentation now.

I need to go into Isaac's history with PPS a bit before my rant and anxiety can have their full impact. But honestly, right now, I don't have the energy to. It is long, complicated. Rife with failures and flaming melt-downs on all sides. And not one but two police reports. And a few medics.

I wish I was kidding.

But I will say this. Since Isaac departed Early Intervention and roamed into kindergarten, he has been to three different schools. And to put it into context, he is in first grade. Two years, three schools, and as we prepare for second grade, we are walking through the doors of our fourth school. What happened? This is where I get frustrated by the cuts in PPS.

We were barrel-rolled into a kindergarten class (100% typical, and he was assigned an aide for 4 months), I ignored the misgivings I had with the teacher (she actually said "I don't think he belongs here") to handle it based on the assurances from PPS. It was a disaster. She actually would roll her eyes when I came to pick him up at the end of the day. And that was the best thing I can say about her. Let me add that she retired at the end of the year (I swear, not because of us!). So she wasn't in the mood to put up with a less than typical child in her last year (bitter bitter).

By spring vacation of kindergarten, I pulled him out and we sent him to a special class at another school (our top-tier school did not have a great special ed program). And it was wonderful. The teacher was brilliant, engaging, and loved her students. Isaac thrived. And two months later, she left Portland to move back East. Her replacement was pulled out of administrative duty to take over a class that she could not handle, and we were not the only family there that were horrified by the ensuing chaos. He lasted in that class for two months. One day he just had enough, and walked from the class. She tried to restrain him (despite a "do not restrain" clause in his IEP) and he grabbed her hair, snapping her head back. The Vice Principal witnessed this and called in both the medics and the police. Despite even the teachers protestations, she was piled into an ambulance and sent to the ER (and was fine). All by 10AM.

The following process of getting Isaac out of that school is a tale in itself, and how we ended up at Pioneer is yet another. But I will say that since the third week of school at Pioneer (and by the way, you really don't want your child to go there, it is a last ditch option for very bad situations), I had a child incapable of learning, reading, behaving suddenly become a model student. The second school told us that Isaac was manic depressive, that he was working with a below average I.Q. and would be limited in his abilities in school. Now that same first grader is said to be happy, smart, and exactly academically where a 1st grader should be, except for in math, where he has started a 3rd grade package.

That, my friends, is the difference between a school unprepared and understaffed, and one that is. But he can't stay at Pioneer (and we don't want him to). And it is time to move on to a more permanent position.

And I am scared shitless.

I Know it Looks Funny, But it Hurts...

Isaac & Olivia heard a few words they rarely hear, as I managed to gouge out the bottom of my foot on a nail that had somehow emerged from the 100 year old wooden floor (darn you, old house)!

Now, I know it looked funny, as I hopped on one foot, the other dripping blood, to the bathroom looking for neosporin and any band-aid I could find (this time, Dora and boots swimming). And I know there was a lot of blood. And there was no lack of drama as I considered whether or not this was going to require shots or stitches. So the groundwork was laid for their reactions.

Isaac is not insensitive, but sometimes he reacts to what he perceives as the most dominant aspect of a situation, without considering the rest. So, mom hopping and cursing her way to the bathroom was just plain FUNNY! I mean, come on! He did manage to gasp out "are you okay mom", which after 3.5 years of training it is good to know that he remembered that much.
And I managed to not lose my temper enough to remind him that laughing at someone else in such a situation is considered not very nice. I tend to lose my temper when I am in pain. Yes, the delivery room was not a pleasant place to be with me. I may have thrown something at a nurse. Isaac managed to pick up this bad attitude to pain from me.

And because it is a spectrum, Olivia decided to hang out at the other end of it. Horror. Tears. Saw the blood coming through the band aid and decided that I was dying. "Oh momma, don't die! Oh no! You have to go to the doctors house (does she mean hospital) RIGHT NOW".

*sigh*

Yes, I am hurt. No, I am not dying. So I calm everyone down, and hobble into a corner to pout just a tiny bit. And bleed in peace.

...And Then There Were Two.

We watched. Thinking, hoping that the odds that are daughter, a girl for crying out loud, would not get this disorder that effected mainly boys. I mean, what were the odds.

Well, pretty darned good.

What were our signs? Less obvious then Isaac's. She smiled, laughed, made (and still makes) great eye contact. She just didn't really talk. And then the stimming started. Loud oral noises, the sound of sharp intakes of breath over tongue and teeth. She was not quite two when we finally made the inevitable appointment to have her diagnosed. And soon after, there was some regression in her social behavior and eating habits. She ignored her friends, and basically stopped eating solid food.

I am sure I cried a bit. I am sure I cracked open a few bottles of wine. I am sure, just as with Isaac, I went through a small mourning period, when I had to let go of the child I thought I would have and accepted the child that I did have. Still, I don't remember it quite clearly. At this point I was ass-deep in getting Isaac into a good space, and signing O up for all of the speech and occupational therapy needed, basically taking care of the business of autism. For two. This would just have to be our version of "normal" for now.

First, There Was One...

Seriously, where to start with that one? He has been my biggest worry since well before he was diagnosed. And, I am a bit sad to say, he was diagnosed later then he should have. All of the signs (glaring, blinking and in neon) were there, but every time I brought it up to not one but two pediatricians, they told me that he was a bit delayed, but still within the range of normal.

And those signs? The earliest one should have been the biggest one. Hand flapping. Every time he saw a spinning object, he would just shiver with excitement and start flapping his little hands. Then poor motor skills. Delayed speech. And when he did speak, it was as if he was speaking a slurry foreign language. My little Drunk Frenchman. And he never pointed at objects that he wanted.

So pull out your ASD Handbooks, and look under "signs", and then feel free to smack me in the head and say "great going, Sherlock". I still look at videos of Isaac from those early years and wonder how on Earth it was missed. Except to say that we really wanted those two doc's to be right. Even as he was being kicked out of his 3rd daycare, and the delta between him and his peers grew wider and wider. He was a loving and affectionate little boy, who had a real interest in other people. Didn't that mean he wasn't? Shouldn't he be lining up cars and OCD-ing about Thomas the Tank Engine if he was?

He was four-and-a-half before it all came together. First Kaiser gave him his medical diagnosis (moderate to severe? really?), then MESD gave us the educational one. And in a flurry of paperwork and parent meetings, he officially entered the Spectrum.

We still feel guilt it took that long. Lost years, that he can't get back and all of that. Letting go of that guilt is still a work in progress, and I am sure he will figure out a way to funnel that guilt into the latest laptop or MP3 player some day.

Since then things have gotten better. And worse. Will go into that later. I just remember looking at my infant daughter as we were going over the official paperwork to enroll Isaac into Early Education. "Thank God she is a girl. Will not have to worry about her as much. What are the chances that she, a female, will have an ASD?"

Do I Need a Shrink, or a Stiff Drink?

So many books. Falling off the library shelves, into my bag and into my head. This weeks list?

School Success for Kids with Asperger's Syndrome (and neither kid are actually Aspie's).
The Autism Handbook
The Autism Answer Book
The Way I See It: A Personal Look at Autism & Asperger's

Each book has the ability to send me into a panic, make me feel incompetent as a parent, or thrill me because my children are not THAT bad. None are particularly healthy.

I think I need to read a book with actual plot, one that distracts me and maybe even enlivens some sedentary part of my brain. I know I can do it - I did manage to read 4 books on the recent trip to France.

So here is my summer resolution (can you have one of those?). No more ASD books. This September Isaac is moving away from his nice safe "special school" to the more hectic program at Alameda. Now, granted, he will still be in a special class as they transition into mainstream 2nd grade, but our experience with PPS so far has been fairly harsh, so my expectations are always low to the ground. Ok, subterranean. And while I am calm now, I expect to be a basket case when the fall term starts. And the only way to remain calm between now and then is to put the books away, pick up some trashy mystery novel, and enjoy the summer.

So suck it, Temple Grandin, Ph.D. You are going back to the library.

We Are All on the Spectrum Now

ASD has this way of taking over your life. All of it. There is no way of getting around it. So trying to not become obsessed is my task for the moment. I really don't want to be one of those moms other parents avoid because after awhile, it just gets too uncomfortable.

Humor has helped. Wine has done wonders. Compartmentalizing works at times, but hard to manage after awhile. I have cried, whined, waded through the murk of self-pity. Ate a hell of a lot of chocolate. Went well with the wine.

One day, I was driving. To or from who knows. And I finally started to question what was "typical", what was normal. What was normal? I feel like a fairly normal person, but breaking down my childhood, it was a bit weird and complicated. Yet I am happy, have a good life, good friends, good marriage, regret nothing. So maybe there is no normal, just variations on a theme. And this is our normal, and that is fine. It may be weird and complicated, but what isn't these days?