My Autistic Boy And Other Adventures In Fatherhood

Last night Mom had a girls night out so I had the wee-ones.  As we snuggled up on our bed to read, I tried an experiment - I'd have the two of them alternate reading pages of a book to see if this would help them interact. 

Now, they don't have a problem interacting, but I'd like to push them to try to do some more things together.  This seemed like a good idea, so while we were brushing teeth and taking baths, I found a book that was long enough, and appropriate level-wise, for both of them to get something out of it.

What I had failed to realize here is that Demetrius is the more avid and aggressive reader of the two.  Maybe it is because he's had more practice since he's had a few more years of school, but from the reports I get, the two of them are not too far apart on grade level reading - but that's not what I saw last night.

Demetrius would tear through his pages quickly - and his issue was less the reading and more the proper pronunciation, Maya struggled along as a first grader should, but Demetrius was helping her out.  The word 'explained' stumped her, she couldn't sound it out or figure out from the rest of the sentence, or the picture, what it was.  Demetrius hopped right in and said, 'that word is explained'.

Maya: Oh. Explained, explained, explained (I don't know if this is something she's learned to do at school, but when she comes across a word she doesn't know, and I think she thinks she can remember it, she repeats it three times.)

They did this a few times, and they weren't competitive at all.  In fact, very complementary.  While Demetrius would get fidgety, he was paying attention. If Maya got stuck he'd lean over to see where her finger was at and try to help, and she was very accepting of his help. Almost peer-like and not very sibling-like, i.e. - they were working together.

Dad was impressed. Don't know if just the moon and stars were aligned on this night, but I'm going to try it again soon.

I’m still mulling over what I blogged about yesterday, the sleepwalking through the day comment.  As I think more and more about it, I just notice that where I am really coming to is a realization that this is a positive and a negative, the fact that I don't think this is something I really do anymore.

Demetrius has changed our lives in so many ways…so many, in fact, that I have something to basically write/blog about on a daily basis.  But I’ve never quite thought about it in a way about how it may positively impact me.

I have stated that his condition makes me live in the ‘now’, because it proves the model that you don’t know what tomorrow does or doesn’t bring, so enjoy today to the best of your abilities. 

But I don’t spend nearly the time I spent before worrying about things that I had previously.  Sure, there are new sets of worries – but it has been liberating to an extent that some things I just now let go. Seriously – I mean, I don’t know how many meetings I’ve been in where I’ve watched executives go at it, people’s jobs being negotiated, budgets and vendors being cut and let go…power plays, where I have thought, “None of this makes Demetrius any better." And while I’m engaged, it really isn’t life impacting for me.  So, I’m not at home worrying about this or that in the ways I would have previously.
 
In fact, last year, I knew the chances of me being let go from my job were extraordinarily high, and no matter what I did, I’d probably be let go.  It worked out that way.  I don’t remember ever worrying about ‘what’s next’ with angst or panic. You know, stomach churning worry. I can’t control decisions others make, only the ones I can impact. I’ve been consulting on my own now for seven months.  I’ve never really had a single sleepless night since my last day at the prior company on February 1st.  Do I know what’s next? No.  Do I worry about the business? Yes, in the ways that I need to re: taxes, new business, etc…but angst?  I don’t have any that I can feel on the surface of my emotions.  All my angst is really tied up in things like Demetrius climbing out on the roof…or his education. This I can impact.

Maybe everyone matures this way, but I’ve not heard anyone verbalize it to me.  If Demetrius were neuro-typical, would I be as appreciative of the good days as I am now?  Probably not, because of those days where he couldn’t talk and just never responded to us…that’s a real bad day when he’s in that kind of autistic bubble.  Other bad days aren’t that bad.  And days where he is excited and engaging are great.  So I am wondering if my average bad days aren’t as bad as the neuro-typical’s…and my good days are better because the bar isn’t as high?  I wonder…

I’m not saying I’m mentally liberated in some unique way. Honestly, my folks were recently out and we had a talk about the stress that Kim and I are constantly under and that it wears on us. This is true in regards to Demetrius.  We have to watch him like a two year old. That’s stressful because you expect your two year old to grow out of that phase. We haven’t, and that’s a lot of stress to watch a child all the time, that intently…and now he talks back….but again, I’m not sleepwalking through my day.  Certainly, this has impacted my being 'on' daily, in more ways than I can probably count.

I’m wondering if all these experiences with this child have made me more acute?  When things are just typical…is your life less colorful? Because the black and gray days aren’t as black and gray as those with the autism…or as colorful when you do have very good days with the boy and he talks and engages and hugs?

Do you appreciate your neuro typical child more when the other has issues?  I do enjoy Maya’s motor mouth (most of the time) because I sometimes just think that without it, there would be very little narrative to important verbal story lines of our family. He’s quiet, autistic, and shy.  He is also a mumbler with a speech impediment.  Without her play-by-play, color commentary…her chatter, I think that bucket would be a lot emptier. Again, so maybe I’m more acute than I would have been to the positive angles of this constant talking of hers?  Of course, there are days when she argues back…

I’m sure this posting is jumping all over, but what I’m certain about is that I’m rarely sleepwalking, rarely apathetic to my daily life.  My days are much more acute, positively and negatively, because of my child’s condition.  It does give me clarity, and it has probably rubbed my patience to the nub too.

Is it too much to say that Demetrius’ autism has brought a level of ‘life awareness’ to me that I didn’t have beforehand, and if you weren’t experiencing something similar, would you understand what I mean?

I’m also wondering if it is a somewhat muted experience like what they say those who have near death traumas go through afterwards.  They are more appreciative and exploratory…they feel more happiness and more pain.  I wonder this has elements of that.

Hmmmmmmm….I know I’m not sleepwalking.  I also know I better get my ass back to work. I don’t get paid to talk about my feelings and thoughts!

Sleepwalking through the day…

Someone said this to me.  I had the thought that since Demetrius has been diagnosed I haven’t really had a day like this…with him around. However, have I had them at the office or traveling for business?  I think so. 

I don’t know if this is a positive thing or not.  But just a thought that kind of hit me like a ton of bricks.

Anyone else have a realization like this?

From this morning.  In this case, it isn't what she's arguing, it is her tone of voice and the use of the word 'frikkin' in discussing autism and vaccinations.

I feel like I'm hatin' on her, but she just bothers me.

I'm sure from CNN's perspective, she's good TV!

Seriously?  We really need this?  Bimbo #1 versus Bimbo #2?  So the vaccinations debate has come down to Amanda Peet and Jenny McCarthy.

It isn't the apology that's needed. It is the need to not have celebrities being the spokespeople for the things that matter in this world. 

Playmates and B list actresses....this is what autism is all about.  Credibility folks, not celebrity....

In my yard, and I became Carl...

Yesterday seemed to be a continual bummer of a day.  Maya didn’t feel well (though we did go get sandwiches at Subway and eat lunch together, which I always love, just the two of us. I rarely get alone time with her like that) and then got bored as only a kid can when her parents are working and she’s played with her boring toys, drawn till her fingers hurt, and watched way too much TV.  She was even ready for Demetrius to come home!

Oh, and she developed some weird sort of heat rash that was spotty throughout the day, and then all over her body when she went to bed.  We think it is from the weather changes we've had (70 degree days followed by 85 degree days and some 'mommy soap' she used in the shower)....

Demetrius had a bit of a bad day, an autistic day, if you will – a lot of time wanting to do TV talk, stay in his bubble…but that often happens on days where he has school and therapy…and probably double that for the fact that he has therapy on Mondays now.

I was also bummed when we tried to load his new video game on the computer, and it kept crashing.  The kids have a PC that is loaded with nothing but games and educational programs…isn’t connected to the Internet, this is all it is for…and this particular type of game (Lego computer game) just crashes each time we try to load one on.  No idea.  So I promised him that I would take it back and get him another one. This appeased him.

Finally, last weekend I spent an inordinate amount of time in the yard working on dead spots from the drought….only to come out and see that a mole was tearing up the yard.  In fact, at one point, as I was standing there pushing down his ‘tunnels’, I see a tunnel pop up across the yard.  Hello Caddyshack.  I am a big believer in nature living in my yard (remember that snake photo from June? Well, I am letting it live in our yard), but now I’ve got these tunnels all over and also he’s tearing up the grass.  I think some mole ‘peanuts’ will have to be put down.  I hate to do it, but I also don’t want a yard torn up from the bottom up either (and he’s gonna eat all of our bulbs, and rip up root systems of my baby trees).

Kim was laughing at me though, I was out there like Carl in Caddyshack looking at those tunnels last night…

We had scheduled a couple of parent/teacher meetings today (I told you last week re: Demetrius meeting), and planned another for Maya, since I tend to work from home on Mondays.  Of course, last night Maya's warm, doesn't feel good and is restless sleeping...so Kim is attending Demetrius' meeting while I nursemaid Maya.  She's a bit better (we'll see how she is as the day progresses).  Right now she's eating breakfast, watching Animal Planet, and chatting my ear off about the show on cats.  She loves cats, she wants a cat badly, and her want of cats is quite high because we don't like cats - so she knows she's not going to get one.  We're big dog people. 

Earlier this morning Demetrius wanted to wear a 'nice shirt' for his presentation at school, and wanted to wear a tie.  Since it is going to be in the mid-eighties today, we talked him out of the tie, but he still wanted the dress up shirt.  He's stoked.  We practiced his presentation before we to the bus stop:

• Texas is the Lone Star State, not the long arm state
• Bluebonnets are the state flower, not blue bags
• He got mockingbirds right (state bird)
• And the state gets its money from oil and long bulls (longhorns)

Sometimes people pass through your life, professionally -- and that's really as well as you get to know them.  Carol was one of those people you wished you got know a bit better. Once, when I was at a prior employer's Pasadena office, she drove out to get me and take me out to lunch and drive me back into LA for a set of meetings. She was sweet, and had just the best laugh - big smile.  She supported (in a PR role) the company I was working at from about 2004-2006.   We changed agencies (where she worked) and the staff all agreed that she would be the person we would miss most.

I keep in touch with another woman from that agency, and when she let me know Carol was, sick, very sick, I let everyone who worked with Carol know.  All I kept remembering was that great laugh

Hug your kid. Because you just don't know what tomorrow brings.

From today's LA Times Obits:

Carol Von Sprecken          
Von SPRECKEN, Carol (36), was born in Los Angeles, CA on December 1, 1971. She passed away after a long battle with breast cancer with her husband by her side on September 22, 2008. She will always be remembered for her never ending smile, faith in others, practical wisdom, strength and joy for life. Carol was a proud UCLA graduate, and her excellence in writing allowed her to enjoy a successful professional life. Although she had many accomplishments in life (such as, becoming a beautiful and talented dancer) Carol was a person less concerned with what she did and what she was about than with whom she shared her time; Carol's great legacies are the relationships she developed and cherished as a wife, daughter, granddaughter, sister, niece, aunt, cousin, friend, but especially as a mother to her son, Brady. Carol had reached a place of complete happiness in her life and even though faced with death she was often heard saying, "If I had to do it all over again, I wouldn't change places with anyone." She lived her life without regret and made clear that the life she had was worth the price she ultimately paid. Carol is survived by her husband, Brad; her son, Brady; her parents, Linda Ades Rozio and Leon Azicri Rozio; two brothers, Zacky Philip Rozio and Leon Jose Rozio; along with cousins, nephews, nieces, aunt, uncle, and dear friends who were all held very close to her heart. Services will be held on Friday, September 26th starting at 11:00 a.m. in the SkyRose Chapel at Rose Hills Memorial Park in Whittier, CA.

So, it is Friday afternoon and Kim and I are talking about our plans on a Friday night.  Friday night, we are going out and we need quarters and one dollar bills.

Wait.....

You thought I was talking about alcohol and that, didn't you?

Shame on you!

I was talking about quarters and dollar bills so the kids can play video games at the pizza restaurant. 

Shame, Shame, Shame....

Kim and I both giggled when I said this and we realized what it sounded like.....