Tuesday, August 14, 2007

Having a good time.....our way

So on my day off, what do I do with the boys? Take them to the library, then to the mall, so they can ride elevators; next to Costco, so they can have pizza for lunch, then the Castle Park (so I can do a phone interview in relative peace while they play...the coda to that is that they end my phone call fighting over a bottle of water), then to another park to throw rocks into a very low stream (not much rain here lately), and now we're home. I'm catching up on work stuff, and they are relaxing in the cool and quiet in the room with me.

Sometimes I wish we could do 'normal' stuff. But they are happy to do what they like doing. So I guess it's okay.

Friday, August 10, 2007

Okay after that last Eeyore Post I have to share a funny

When we were getting the boys ready to go upstairs for bed last night, DH discovered a cell phone on the TV. It didn't belong to either of us. He brought it over to me and asked (half-jokingly) whether my boyfriend left it.

I was flummoxed. I had never seen it before, and my friend Ruth (who has been our only visitor since we got back from the conference) has a smartphone. And she didn't go into the family room.

So DH calls 'Home' in the phone directory and hands it to me. I get a guy named Ted in the next town. I ask him what his phone is doing in my house. He is as puzzled as I am.

In the background, I hear DH saying to Nic "you WHAT?!"

Apparently, Nic found the phone in the library yesterday. Picked it up off the floor. Put it in his pocket. Never said a word about it. (I have visions of him re-enacting something he saw on YouTube, but anyway).

I dropped the phone off this am. For some reason I find this hilarious, that my chatty son has all the sudden discovered the joys of circumspection lol

Thursday, August 9, 2007


For as much as I network, for as much as I put myself out there, and try to get my boys involved in different things, I find autism terribly isolating.

We're doing a special needs tennis program this summer, and even there my boys stand out.

Not in a good way.

I'm trying to get my younger son, who has shown alarming regression, more services. But his case manager has repeatedly sat on my requests, then answers weeks later telling me that it 'isn't her job.'

My older son, for all his intelligence and progress, still has poor social skills and impulse control. My younger son is starting to display these as well.

And I was taken to task for not noticing that a package of turkey I bought at Costco was not vacuum sealed. With the rest of my world falling apart around me, I honestly can't bring myself to care.

As an adult on the spectrum, I need to keep lists of everything I need to do, pay attention to and keep track of the house, my job, my kids, their needs, their stuff....and I am finding that I can't manage the weight of it all right now.

I'm in a tough place. Keep me in your prayers and thoughts.

Sunday, August 5, 2007

Email conversation with an NT

I wanted to share my experience with y’all about a conversation that started via email over a blog I wrote in myspace: Skip the blog if you’ve already read it, the conversation that follows is the thing…..

Not getting the tossing inanimate objects thing....
It's been an eventful week on the ponderosa. We met my mom for dinner last night (that went okay, I have mom issues, but it's important for the boys to see her, so we do it). Afterward we discovered a new playground in Elkins Park, a mini castle that we've passed a few times and Nic has wanted to try out.

(Should I leave out the part where I negotiate we go there after Toys R Us because Nic wants to see if there's an elevator? Nah.)

So, the simple beauty of going to a playground off our beaten track is that we don't run into anyone we know. And believe it or not, Nic actually makes some friends to run around with. They show him how to negotiate some of the trickier climbing.

Then Nic goes into the sandbox. Gabriel does some sprints.

Eventually Gabriel climbs into the castle. Nic resumes chasing the girls. It becomes apparent that the game is changing, that they are 'getting' he is different. I hear one girl call him 'sandbox boy.' Then he finds a hairbrush and starts tossing it into the air. At that point it's time to pack up the pineapple, the luau is over.

One thing I don't get about Nic is the object tossing. The heavier and more damage it can do coming down the better. He fell asleep buck naked on his bed after his bath last night, so I guess it was a good day.

And he is creative. He wanted to make a cement mixer at the playground, and kudos to him, he figured out a way to do it.

I was surprised to find this comment a little while later:

I read all of your blogs today, and I feel for you (in a way that, of course, doesn't really comprehend the weight of the challenge).But I have a question about a comment that you made in Blog 1. You said that you and G have also been diagnosed with autism. I don't mean to pry, but I'm genuinely curious. How does one go their whole life without knowing or sensing? I mean, I've heard of Asperger's, but even that doesn't seem to fit your situation. Is there a carrier gene anomaly that you have that is asymptomatic? Or did I just read it completely wrong? I ask these questions because my wife is a big believer in "immunizations give you autism." I'm not that way. But something appears to be causing numbers to rise dramatically in the U.S. Do you have theories? Sorry to be so personal. I wouldn't have asked if you hadn't published this stuff here. If you have written something else that answers these questions, feel free to just post that into a reply. I don't want you to waste too much time on a response. Your hands seem plenty full. All the best... – James

I responded:

Hi James,I knew my entire life I was different, that I had problems following the unwritten rules that everyone else seemed to get. When I was pregnant with Gabriel (6 months post dx with Nic), I attended an autism conference and had to leave the session on Aspergers early because I was having an anxiety attack. They described my entire childhood and adolescence, my lack of friendships, the challenges I had in school, with bullying. The whole nine yards. Aspergers had been described in the 1940s, but it wasn't until the 90s that it appeared as a regular diagnosis. And by that time, I had survived my childhood and adolescence without killing myself, so I never gave it another thought until I had a child, who I knew from the get-go had issues. Nic was diagnosed almost 5 years ago, at the crest of what would become the tidal wave of autism dxs, so when Gabriel was diagnosed, it was, in a way, less of a struggle to find out what was going on with him, since I already lived it with Nic.As for vaccines? I don't buy it. There is no scientific proof. Thimerosal has not been in vaccines since 1999. However, there is a strong correlation in environmental contamination of methyl mercury that is formed when inorganic mercury from nuclear power plants meets groundwater and soil. And there is evidence of that.There is a strong genetic component in my case, certainly. Three out of four family members are on the spectrum (my husband being the only neurotypical). Had I known I was a carrier, I certainly wouldn't have had kids, but I'm glad I had these two. They are extraordinary.Please feel free to ask any questions, I'll be happy to answer the best I can.All the beste!
He wrote back:

Wow. Thanks for sharing that. Your blogs didn't allow me to go back far enough I guess to see your original statements re: this. Or, at least, I didn't know how to go back any further. I think that one of the NPR shows I work with, This American Life, is doing a segment on an autistic kid this weekend (the promos have a kid talking about NT's). Is it like autistic people have a 10-point scale - and a severely autistic person with no emotional attachments is a 10, and somebody like you (who seems more highly functional than I am) is a 1? Where are your kids? Do people with autism 'get better'? I don't mean in a "no more autism" sense, but in a functioning sense? Are there new lights appearing at the end of the tunnel? I'm glad you had your kids, too. And I'm glad they have you as their mom...
So I said:

10-point scale? Hmm, I never thought of it that way. We are all relatively high functioning. I am extremely intense and emotional and I have maybe a handful of friends I am very tight with. Most people find me a little, um, different lol. I'd put myself at about a 5 because my longest standing relationships are with my best friend from high school (about 23 years) and my husband (almost 20 years). I'm not a people collector. Nic is about a 5 also, but for different reasons. The social stuff is harder for him, but he is also only 7. He only wants to do what interests him, he's not much of a turn-taker, but those people he is close to, he is very close to. Gabriel, I'd place at a 3. He's a lot more flexible and less scripted than Nic. But he does this whole Forrest Gump thing where he totally needs to do sprints up and down the longest streth of uninterrupted floor or ground he can find. Do people 'get better' from autism? Well, there isn't a cure, but I think people learn to function around their deficits. I have had over 35 years to build my internal database of hundreds of thousands of responses to various situations, but God help me if something happens to me that I've never had happen before. I panic. And all my mistakes are well learned from. I have learned a GREAT deal from my screw ups. All I can do is hope my boys do the same. Gabriel has already demonstrated that capacity. Nic is a little trickier.
His response:

Thanks for your insights (and experience)... You seem so acutely aware of other people treating your kids differently. That seems atypical for the mental stereotype I have of people with autism. Are you familiar with Temple Grandin - the animal research/autism point person on NPR? She seems to be severly afflicted (7 or 8 on my stupid 10-point scale). She seems completely unable to make emotional observations. You, on the other hand, seem so compelled by emotions and love for your kids. Is it just that I'm so completely ignorant of the autistic reality? (I wouldn't be offended at all if your answer is yes.) I think what I'm trying to say is, I'm happy to know you... and to know that the picture of autism that I have does not rule your life. You rule it. And you have been afforded the wonderful gift of love - multiple times - and you're able to relish it. That makes me happy. And gives me great hope. For your family, and others. Thanks again... I wish y'all all the best... - James

And my response

Well, my experience is that of an outsider, I was always acutely aware of looking in. That said, I am hypersensitive to how people treat others. I am not particularly good at reading people, but I can get my head around situations pretty quickly and respond appropriately. Picking up on negative vibes is relatively easy, but I don't always understand the 'why' behind it. This medium (writing, blogging, communicating via the written word) suits me fine, because I have time to think about what I'm saying and how I want to say it. Speaking can be painful (although I've been told I am personable and kind and no one would ever guess that I am painfully shy, so I guess I can act). I can and do speak in front of people on a fairly regular basis, but conversation can be hard. Autism is a strange creature. People think "Rainman" but it is, and it isn't, if you know what I mean. My Nic talks a lot like Rainman these days. Gabriel, OTOH has a very animated little face but has a really hard time modulatiing his voice. And I look and act normal enough, but I've had a lot of practice. Difficult though, is the fact that autism doesn't physically mark you like cerebral palsy or Downs does. SO when my big-for-his age Nic throws a tantrum in a public place, I get a lot of comments to the effect of "Open up a can of whupass on him." To which I reply "He's autistic, thank you for your compassion." (You know what I REALLY want to say). Doesn't happen so much now, but it happened A LOT when he was 3 or 4. I've willed myself to forget a lot about that. Thanks for the tips on TAL--I know precisely what you mean, and that's why I like the show so much. I'll keep you posted. Thank you for your kind words. I appreciate it! best wishes,

I’ll let James have the last word:

My pleasure. I wish we were all as "normal" and compassionate and eloquent as you... Take care... - James

Quick Post Conference Post

Good lord, things are going to be insane shortly. Just this week Nic has started realizing his differences. We were at a lake on Friday and he tried--several times--to push into a group of siblings (or cousins, not sure, they were all there together)--unsuccessfully. And for the first time, he was quite moody afterwards. My cheerful unstoppable boy was given pause.

He is very intelligent. Now the emotional intelligence is emerging. God help him. This is going to hurt.

The conference was amazing, and already the boys are talking about going back next year. I made quite a number of connections myself and will be an emailing fiend in the coming weeks. I've convinced my cohorts/partners in crime that we need to present next year. We'll see how it goes.

But we have some stormy times ahead. Wish us patience.