And if you ever turn around....You'll see me

The other day I watched the movie Adam on HBO. It's a beautifully told story of a young man with Aspergers Syndrome and a budding romance he has as he begins to strike out onto the world on his own. Hugh Dancy's performance as Adam is spot on.

Without tieing things up in a neat little Hollywood bow, Adam shows what happens when there is understanding, compassion and an open heart toward people who see and experience the world differently. It also faces the reality of such things with bittersweet honesty, especially in that way that depending too much on someone holds you back, yet that dependence can be the launching point for something greater for you both.

The movie has stuck with me for the last several days. Haunted me really. If you've read any of my previous blogs on Aspergers you'll immediately assume that I think much about my daughter when thinking about this movie, and you would be right. But there is much in the character of Adam that reminds me of myself in a lot of ways. I think I'll save that for another blog though.

I've been thinking much of my daughter who is now 20 and not long away from striking out on her own. The song that comes at the end of the film is one of very beautiful and simple words of encouragement and the kind of words I wish I had gotten in my youth. The kind of words I want to tell my daughter now and holds in her head and heart in the moments before, during and after she walks on stage in a year and a half to take that diploma after 4 years of struggle, growth, frustration and triumph.

This is for my beautiful 20 year old daughter who is becoming an articulate and wise young woman even as she hangs on to many of the trappings of childhood, as many of us do at that age before learning to let go and walk on.

Can't Go Back Now

Written and Performed by the weepies

Yesterday, when you were young,
Everything you needed done was done for you.
Now you do it on your own
But you find you're all alone,
What can you do?

You and me walk on
Cause you can't go back now.

You know there will be days when you're so tired that you can't take another step,
The night will have no stars and you'll think you've gone as far as you will ever get

But you and me walk on
Cause you can't go back now
And yeah, yeah, go where you want to go
Be what you want to be,
If you ever turn around, you'll see me.

I can't really say why everybody wishes they were somewhere else
But in the end, the only steps that matter are the ones you take all by yourself

And you and me walk on
Yeah you and me walk on
Cause you can't go back now
Walk on, walk on, walk on
You can't go back now

"How Sharper than a Serpent's Tooth it is....

...to have a thankless child" - King Lear

Laurence Olivier as King Lear, Alec Guiness as The Fool at the Old Vic, London (1946)

This is a long one, I apologize.

I've written before about how proud I am of my daughter, who, at the age of 2 was diagnosed with autism. Mirror staring, phrase repeating, repetitive behavior, classic autism. I've written about how in many ways it was her own sheer determination and will that helped her break through a good deal of that to the point where she is high functioning and is now under the label of Asperger's Syndrome. I've never written about the part of being her dad that is painful, frustrating and makes me want to run screaming and deny that I am a father to anyone, let alone her.

Today will change that.

First, something to edify those of my readers that don't know what Asperger's Syndrome is.

This is the simplest comprehensive explanation of AS I can find. If you want, read this first, then go ahead. It might be helpful.

My daughter and I are in the middle of a kind of fight this week. Over the Thanksgiving weekend she got into a pretty intense battle with her mother and her stepfather. (To clarify, my ex is not married yet, but her fiancee has lived with them for a few years now so the relationship, while not official, is concrete enough.) My daughter likes digging at my ex wire, as teen aged, early college children are want to do. It went too far, causing my daughter's friends to tell her to back off and my ex wife to break down.

Now to be sure, as events were given to me, my ex was inappropriate a few times and has a tendency to invite this sort of abuse from my daughter without accepting that responsibility. But in the end, my daughter needs to learn when enough is enough. If you've read the link above, you can see how her AS plays into the already troublesome mentality of the late teens/early twenties brain.

Enter me, calmly picking her up on a Sunday before she heads back to school for breakfast and a calm talk about what's going on and how to patch things up. I won't go into detail, but it got ugly at one point when one of the adults lost it and set back my efforts considerably. It was a tough day, but eventually Sarah saw where she had gone too far, felt bad about it and owned up to it. There was peace in the valley, more or less.

I took her to the bus, she hugged me before getting on and thanked me, then off she went.

A little more background. Her mother and I split just before she was diagnosed as autistic. Over several years my ex and I tried to get back together, back and forth back and forth. Long story short, eventually we got smart and gave up.

During the time since splitting up the relationship with my daughter has been complicated for all of us. I alluded to an over possessiveness on my ex's part that created a block between me and Sarah that I didn't have the maturity to understand or work through constructively. The bottom line is that in many ways Sarah and I never got to bond enough in her babyhood. After I moved out, whenever I could come over to begin our weekends together, there would be tears. This was fine and understandable of course, but over time, its difficult to not take this personally.

The AS resistance to changes or shifts complicates this...going to Dad's house for weekends, Grandma's for Christmas, etc...all shifts that are difficult. And because Aspys have trouble with empathy at times, they don't understand the emotional impact of their apparent indifference or resistance. All of this I understand, but in the end, our history while filled with many wonderfuls is also filled with many rejections. Her rejections of me and as much as I get it, it still stings because frankly, its hard not to hear "I love you, dad" once in 19 years. Not because she doesn't love me, but because its just not something she can say. "You too" is the best I can get.

So, honestly, I am somewhat sensitive as a dad. Not one of the most mature aspects of me. But there it is.

Sarah and I had a sort of date this weekend to watch on Hulu from our respective locations, the last episodes of Monk. One of the ways that she and I bond is through the shows and movies we love. It's also a classic Aspy thing and it has made a difference in our relationship. We started to get much closer when I started turning her on to Buffy DVDs when she was 11. It continued with Angel, Alias, Firefly....Monk she found on her own but I was watching it too...and she relates to Monk (guess why).

So, it was something I looked forward to. We made the arrangement last Friday when we were all up at her school to see her ensemble concert. We agreed to watch together over the weekend.

Saturday didn't work out well because it was crazy around here with my roomie's party preparation, so we agreed on Sunday. Sunday was a series of phone calls on my part with schedule issues for her and subsequently me saying, ok..why don't you call me when you are able to watch, even if its not tonight. She agreed.

End of Monday I find on her FB status that she's watched the show and hasn't bothered to tell me directly. Now, I'm less pissed about missing the show with her, though I am disappointed. It's the not calling that gets me.

And yes, she's 19 and to some degree this is normal anyway...and combine that with AS its not unusual. But when I email her about it I get scolded for thinking its such a big deal, as if my phone calls weren't a cue that it was something I really wanted to do with her. To her it wasn't important enough because we weren't in the same room or couldn't talk about it during commercial breaks. So it couldn't possibly be important to me.

Ugh. She doesn't get that its rude, she tries to say that I could have called instead of me waiting for her (as if my 5 calls to her 0 weren't enough). It's the same kind of insensitivity that drove her mother to tears only a week ago.

I've spent 19 years enduring resistance, rejections, patching up fights, advocating for her helping her, coaching her monologues, staying in a city I have come to loathe to be near her, suffered financially to some degree for her and continue to do so. All of these things are things that go along with being a parent. And I don't want to play martyr to it, but today I am sick of it. I am sick of the treatment, sick of the life I live for it, sick of the nonsense drama I have had to deal with. Sick of the situations I am stuck in for her. SICK OF IT.

I know in a few days it will be ok...peace will be had...and that this goes along with the territory of being a father of an Aspy, who is 19, who has all the arrogant and stubborn genes of both sides of her family and who is also a spoiled brat (that I blame on the other parent...but it is what it is). It also goes along with the territory of a child who had the strength of will to pull herself from staring at mirrors in silence at the distance of half an inch, to moving to mainstream education, a specialized high school for actors and into college. Yes her parents helped, but in the end it was her will that pulled her through...and its that same will that makes me want to grow my hair back so I can pull it all out and run to California or Georgia or Arizona and forget I was ever a father. Today. Sometime later this week I'll be back to being proud as can be of her for one reason or another.

I just have to keep remembering, this comes with the territory, this comes with the territory, this comes with the territory.

Daughter's ASPerations Part II (Or, Why My Daughter Is A Hero)

After that incident Sarah seemed to slow down. Her passion for reading (book was her first word even before mommy) ebbed, though it didn't entirely disapear, her responses were slower and she began to develop immediate echolalia as she got a bit older. The poor thing would respond to us by repeating what we had just said to her, like "come here Sarah" and then that was it.

In our ignorance, her mother and I thought she was being willful, that being a normal trait in both our families, but it kept up...and my poor daughter would continue to repeat our commands to come here (or whatever it was at the moment) with increasing tears. She knew that a response was in order, but what that response was supposed to be, she could not fathom. Oh the scenes this sometimes produced.

When she was about 2 we enrolled her into the nursery school where my ex wife worked. Right about this time was when my then wife was becoming my ex wife. I'd get phone calls from her saying that something was wrong, our daughter was not doing well in her class as far as she was observing and suspected that she was autistic. I didn't take this very seriously. For one, my ex wife had a tendency to be read about a disorder and then think she had it and she had just recently been reading up on autism. So I poo pooed it. Her boss did as well. But after awhile the two women who were my daughter's teachers began to suspect that my ex was right.

One afternoon I came in early to pick my daughter up for some lunch and as I watched through the window I saw that while the other kids were playing with eachother or toys, my daughter was standing half an inch from the small mirror, staring as if studying something. Her expression was blank and yet had a determined air about it. When I saw this, I knew that my prejudice against my ex-wife's observation was proving a disservice to our child.

A short time later we had her evaluated and she was indeed diagnosed as autistic. We were guided to seek a formal evaluation in New York so that we could enroll her into a therapeutic program for the following year. NYC is good this way in that it is required by law to provide services through the public school system to children with disabilities. And while over the years we were involved with some serious political wrangling from time to time, my daughter's progress would not have been as good as its been. Though as I continue you will see that so much of it is her own work.

(To be continued further....)

Distracting ADDitions

The final set of criteria from Edward Hallowell's book.

I scored an 86 on the Jasper/Goldberg test and anything above a 70 comes with a recommendation to immediately seek a full on official diagnosis.

A friend of mine scored over 100 when they took it. Now for years after learning that my daughter was on the autistic spectrum, I began to theorize from observation that just about everyone is on it. So I'd be willing to bet that most people score at least 50 on it. I invite you to take it.

Full on therapy is not in the budget at this point, so I'm looking into dietary approaches and utilizing my new found awareness as best I can.


14. A sense of insecurity.

This may surprise many of my friends because I tend to come off as much more confident than I actually am. Though in much better shape than I once (MUCH better) I still have almost crippling moments of self doubt. Often to the point if simply freezing motion entirely leading to inaction.

15. Mood swings, mood lability, especially when disengaged from a person or a project.

I'm not sure mood swings would be accurate, but I do have anxiety under these circumstances.

16. Physical or cognitive restlessness.

When I was younger I was a massive fidgeter. I always had to have something in my hands, or I'd bounce my leg with my foot.

In college I had a friend named Karen who once just grabbed a pair of scissors I was playing with and all but yelled "No more fidgeting". This was actually very effective because I wasn't aware of how annoying it can be to others.

Now I don't fidget very much, but my brain can fidget if I don't give it something to do or watch.

17. A tendency toward addictive behavior.

This has never really been true for me. Aside from teen age and early 20s indulgence in alcohol, drugs and even cigarettes, once I got into my mid 20s I'd moderated everything, quit cigarettes completely (though I've smoked under some very rare very high stress situations. The last time being 10 years ago...but that's another blog entry altogether)

Addictive behavior does run from my father's side of the family however.

18.Chronic problems with self-esteem.

I think I've covered this a couple of times. Its less of an issue than it once was, but it lingers.

19.Inaccurate self-observation.

I've actually been told by past therapists that my self-observations are generally very accurate. So this would be a no.

20. Family history of ADD or manic-depressive illness or depression or substance abuse or other disorders of impulse control or mood.

Well, mom's got ADD. Actually officially diagnosed. My daughter definitely has ADD mixed in with her Aspergers Syndrome.

There's a definite history of alcohol abuse in part of my family, as I've said. Depression and other disorders tend to go along with that. That was certainly what did my father in (again, whole other blog entry).

Yeah. I think its fair to say I've got it. Therapy is just not in the wallet so right now I'm looking into supplementation, diet....that sort of thing. I'm sure I'll be writing about it.

Thanks for listening/reading. See you tomorrow.