Our Autistic Life

As much as I’d like to focus my energy elsewhere I find that attention needs to be paid to my daughter’s obsessions and fears daily. Don’t get me wrong ~ I do enjoy all the weird little thoughts that tend to cross her brain ~ but I also worry that this pattern of losing one set of fears only to replace them with something shiny and new heralds a future full of difficulties she will never fully overcome. Her newest fear is of the Santa Ana’s. Yep, the wind.

Ok, admittedly, Autistics are very sensitive to the….well, everything. I could write out a long, long list of all the things that set their teeth on edge, but it wouldn’t do more than scratch the surface. The bottom line is that these kids worry and they worry pretty intensely.

So, the wind thing is new, but only in the way it’s evolved from a sudden and odd fear of tornados. I don’t know how or why that one developed, but now it’s evolved to include strong winds that come up suddenly and have her pushing to my side so much that I think she’s trying to climb inside me!

But, that fear ~ oddly not of earthquakes, which we get kind of a lot! ~ that fear is nothing compared to her obsession with death. I won’t ever argue that she’s been through a lot in her short life, but I cannot seem to get her past the death thing. Her dad died when she was a baby. My dad died several years ago. So, she now is obsessed not only with us “being the same!” as she words it, but with how and when people die. She’ll bring up my fathers death daily; asking me things like “Was he old?” , “Was he sick?”. She was keenly aware of Keith Olbermann’s father being ill and when he  did pass away she actually said ~ and this brought tears to my eyes! ~ “Poor Mr. Keith’s dad died. But, it’s ok because his dad is in heaven with my dad and my dad will take care of him.” What 6 year old would even think that way? I mean, talk about a sentiment that goes well beyond what one would expect from a tiny, tiny child!

Obviously, a kid who’s lost a parent will be sensitive to anyone else going through it, but for her ~ this little person still trying very hard to get a handle on emotions and what they mean ~ this obsessing about death can be hard to hear about every day. And, almost like clockwork today she began ~ “Mom, did your dad die because he was old?” , “Mom, was he sick or did he die in a hurricane like my dad?” , “Mom, is God dead?”. 

I bet that made you tired and you’re not even here!

So, I try to calm her fears and steer her away from morbid conversations. I think I’m getting pretty good at it, but just the same, I’ll be pouring a cocktail soon!


There’s been a weird vibe in the air around our little world lately. Not only has the universe seemingly been conspiring to make sure I don’t feel too comfortable in our tiny, dingy flat (Hell, I’ll never get the damn book done if I don’t focus!) but, I’ve been looking around at things and……I can’t help but to think I’ve taken us on a bit of a detour.

There is something to be said for living uniquely, so I’m not going to try and make anyone believe the last year has been a complete waste or loss. After all, we’ve managed to have some fun while also kind of getting things together for us. We don’t have nearly the pictures I’d hoped to have of Nella with her favorite movie stars, but what we do have is pretty cool.

Cool, but weird.

A couple weeks ago was kind of a big deal. I took her down a few blocks from our place before school and she actually managed to meet and have a photograph taken with Jack Bauer – aka Kiefer Sutherland. Cool huh?

Well, I surprised her with a framed copy of that picture and placed it on top of the television. My intent was to give her a way to gaze lovingly at it anytime she wanted without handling it, dropping it and breaking the glass (again). But, what’s happened instead is my growing unease. Why? Well, who else has a framed photo of Kiefer Sutherland on what is effectively their mantle space – the place reserved for family photos. Ok, you may be thinking that I’m OVER thinking all this, but there’s more to it.

Because we lack an actual mantle or even proper shelves, that photo is one that I end up looking at no less than 75 times per day! I mean, it cannot be helped; it’s right there! And, the thing about Kiefer that was genuinely surprising to me was how unbelievably, ridiculously, gorgeous he is. Don’t laugh because you simply have no real idea unless you’ve seen the man in person. Kiefer Sutherland is actually good looking in a way that is unfair to all the other men. (Which left me a stuttering fool and we’re not even going to get into that!)

So, seeing this photo all day long it’s seeped into my subconscious. It has seeped in and invaded my dreams. Not Kiefer mind you – Jack Bauer – because there’s always some kind of terrorist plot wrapped up in a Salvador Dali painting that leaves me both breathless and reeling from the fact that even in my dreams I’m completely commitment phobic.

Just think about it for a moment. The very first of these dreams involved city busses that crashed outside of my house and somehow dissolved into this powdery substance that was toxic to inhale. I quickly shielded Nella from the passing cloud, but then got up and ran to the front door to pull inside the people outside. That’s when I saw Jack Bauer himself standing just inside my door (dressed exactly the same as in the photo – as he always seems to be). I was so relieved that he was ok – seriously, I still recall how my heart seemed to freeze in my chest. YET, in the next breath I really needed to know just how the hell he got inside my house!

I mean, the most beautiful man I’ve laid eyes on in years – seriously, years – and I’m actually freaked out that he had a key to my house??!! Really, how does a person go from “My God, I’m so happy you’re alive!” to “And, just who the hell gave you a key??”.  Even in my dreams I’m a neurotic mess!

Yikes, and then there’s Nella – down to reminding me on a daily bases now that she’s not at all pleased that I haven’t yet gotten her a new father. Two days ago, as we watched 2012 she recognized John Cusack. For an Autistic that’s kind of huge. It takes so long for them to learn to recognize the difference between “man & woman”, “dog & cat”, “human & animal”. So, when she got those concepts down I really didn’t concern myself too much with her inability to recognize an actor from movie to movie. But, when she did on that night I was so shocked that I slipped up and answered honestly when she asked me “Is HE married, mom?”.

Crap. Now, she’s convinced he’d make for a good husband. And then there’s my sister. She’s the one who decided my soul mate was Michael Rosenbaum because he and I both really like Peanut butter Captain Crunch. My God, no wonder I’m terrified of a relationship!

Which, of course, brings me back to the original question – which way am I really going? I am currently trying to convince my sons that being in a relationship isn’t the be all, end all. Ok, fine. But, where is that line between living for a man and spinster shut-in? When did this all get so hard?

Hell, maybe the answer is as simple as living in LA will make you a crazy person. The only thing I do know right now is that moving sideways is at least not moving backwards. That sideways is a direction that can be steered into forward motion. Er, that and…..

Dear God Kiefer Sutherland is HOT!

{March 13, 2010}   Beginning at the Beginning

I already knew my daughter had Autism by the time she was diagnosed, so I’m afraid they were denied the reaction expected from the announcement. But, having her officially diagnosed did have an impact! We left the Lanterman Regional Center and walked to their little outdoor fountain. I was still smoking at the time, so I sat and smoked while watching her run around the small area. As it sunk in and became the kind of “really real” a professional diagnoses grants, I suddenly felt like all the blood was draining from my body out through my feet.

My God did I need a drink to go along with that fag! Not a cocktail, but a straight up, hard ass double shot of whiskey to tide me over while the bartender poured another one!

The thing is, once you get to that place where you are pretty damn sure the previous “advice” from doctors were crap and that your tiny child would never grow out of all you have been witnessing, your drive becomes to prove it. Because, once you prove it you can take the next step and get your baby girl or baby boy help. Of course, I’m sure many before me have had the same reaction as me that day. I had the diagnoses – my proof! – but now what? The fear that slowly crept  into me wasn’t so slow in becoming terror. All I could think of then – and for months after – was how my baby would never have a normal life.

You know, there was even a point when I was overcome by tears while riding a LA Metro bus. There is just so much that I feared she would never have access to. For instance, that wonderful, horrible, and overwhelming feeling of falling in love.  Or the incredible passion that can be had when making love. Nowadays I actually hope that she’ll never desire to have sex because the way things are now, I really believe it would traumatize her. But, she does want to be a mom someday. She’s already talking about how great that would be. And, I sit and wonder if she’d be capable of nurturing a child. To nurture means having access to emotions she’ll never fully understand.

Which actually brings me back to what I was talking about earlier. My girl was born 2 months premature and due to that her pediatricians shrugged off every delay and quirk to that. And, not knowing any better, I went along with it! Hell, I was so ignorant about Autism (I’d seen one movie, like, 10 years earlier) that I would often say “Well, at least it’s not Autism!”. But, I do feel lucky to have been so ignorant because I believe I might not have gotten as far with her if I’d known sooner. I doubt I would have pushed her to speak the way I did. I doubt I would have insisted that she be physical and at least allow hugs. And, I really doubt I would have pushed her to interact with people.

In short, I think I might have really fucked up and listened to the so-called experts!

The thing is, each child is different, but I think we can all learn more from each other and from our kids than a lot of the doctors and “professionals”. My daughter’s current nit-wit teacher recently testified in court (Ugh, I’ll get to THAT in another post!) that she has experience with Autistic kids, yet in our first meeting she actually said to me that it was hard for her to see Nella as Autistic because she’s so receptive.

Ya, right. Because they’re all comatose or retarded, right? Asshat.

So, I sit and look around at the people who have actually made it their profession to help special needs kids and realise that special Ed. has become the new Congress! If you’ve been following things since the Presidential election you’ve seen the number of Congressmen and women coming out of the woodwork just to prove that being in Congress is the best way for an ignorant, racist, bafoon to make $100,000.00 a year in base pay. And, in my case I am seeing that special ed is now a job where you can excel without really knowing anything! Or, helping anyone! Therapist after therapist took the stand and lied through their teeth in order save their own ass. One actually had the gall to usurp a game I had made up to help my girl pronounce her “R” sounds! Fucker.

And, it’s things like that which have me writing this blog. I hope it catches on with the folks who could really use it the most – parents who are right now where I was two years ago! Parents trying to make sense of it all and overwhelmed by all the information out there. I’ve made plenty of mistakes, but more often than not I’ve actually managed to get it right and want to share that. I won’t get into the whole vaccination thing because I don’t believe it’s responsible for me to say one way or another since I’m not a doctor. But, I can be (and will be!) very vocal about IEP’s, mean kids, OT, cozies, and the tons of other things I’ve learned the hard way. If I can do one thing to make this brave new world of yours a bit easier I’m glad to do it.

For instance, you may be interested to know that – while it did take nearly a year and a half – I have come to see my daughter’s Autism in a different light. Not only do I believe she will be able to live out in the world on her own, I look forward to seeing her on the news once she becomes the astronaut she’s determined to be. I’ve also come to see just how lucky I am to be her mom. She’s so freaking cool and reminds me daily how precious life is – how precious love is – how precious our time on earth is. Though I do get frustrated by daily irritations like everyone else, she quickly reminds me of how cool our life really is and that it’s up to us to decide what is crap and what we’ll do about it. For me, I plan to enjoy the ride.

et cetera