Saturday, September 22, 2007

meandering chardonnay fueled rant

Where to start? Dh is stuck in Italy; he left a week ago today and was supposed to get in yesterday. Long story short, he overslept, missed his flight, and won't be in until tomorrow.

Nic. Ah, Nic. Kicking academic tush in 2nd grade thus far, but is so seriously lacking in support (his teacher is split between two classrooms and they just got around to hiring an aide...whom I am beginning to understand is not enough). I get emails basically blaming Nic for his own bad behavior when it seems to me that it's easier to blame nic than to give him the support he needs. Seriously considering calling an IEP on this NOW.

More Nic. We started swim lessons this week, as I have found a pool both boys will get into. We did family swim at that pool today. I feel good about this. I think I've found something that both boys can have fun and success with.

More Nic. So our last day of our parish carnival was today and I took both boys. They had a blast, except one man kept Gabe off a ride that I think Gabe was tall enough for (or one kid got off who was Gabe's height, and he had no adult with him--so I don't know why Gabe was kept off, esp since I was riding with him, but anyway). The big downer was the big slide. We rode it about 10 times, but the guy at the top, when he saw how upset Nic was when he didn't give Nic the middle lane, kept pushing him to one side or the other. I finally marched up there and told him "Shame on you, he's autistic. Give him the middle lane and stop riding him like that!" (I had been going down with Gabe and we weren't all together--I would just see Nic looking upset, and of course, Nic loses his ability to put a coherent sentence together when he's upset).

The guy just gave me a look like I had two heads. Didn't even have the humanity to look ashamed at harassing a disabled kid.

Right now I'm just p*ssed off. Why does eveything have to be such a freaking up hill battle? I would love it if for one day I wouldn't have to be putting on my battle garb for one boy or the other.

(ps, Gabriel STILL doesn't have an IEP or notice of placement, even though he's been going to school the new four-day schedule).

Tired of this sh*t. Need a vacation. Or more wine.

Thursday, September 6, 2007

End of the week, month, summer

Had the audit yesterday. I thought IEP meetings were bad, but this was worse. Nothing is resolved; more info is needed, and I pray that whatever we provide will be enough to absolve us. Thinking we should hire out to do taxes from now on, as general incompetence seems to have triggered this.

And my biz, of course. Maybe I should work for some one else and get my W-2 and call it a day (shouldn't have even typed that, I just gave myself hives).

SO I've learned a few lessons here. Things are not bad or unmanageable, but sometimes taken together with the autism (can you believe THAT came up in the audit??)--not so much autism, but all the complications that ensue, especially with Nic--well, I think sometimes that getting a get out of shit free card should be mine for the playing.

But it's not, so I deal.

We've come a long way in two years

We had the semi annual dentist appointment yesterday, wherein we all go en familie to get our teeth checked, cleaned etc.

Two years ago, Nic needed restraints to get the cleaning done (and two teeth pulled). I hated to do it, but the only other choice was anesthetizing him, which I refused to do. We got it done, but with no shortage of screaming, yelling and general mayhem.

A year ago, we didn't need the restraints, but Nic needed to be in my lap. And he did a fair share of yelling from the chair, but at least this time we didn't need to be in a closed room significantly apart from the other patients.

This year? He went to the chair on his own. I was getting my own teeth checked and cleaned a few chairs down and could hear Nic chatting with the hygenist between getting his mouth checked and teeth cleaned. When he was done, he came down to my chair to get his brother and shepherd him over to get his teeth checked and cleaned. (and Gabriel was fine, too).

I never would have imagined that we could actually go to the dentist and have it be a somewhat 'normal' experience. For as far as we have to go, I can't believe how far we've already come.

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.

Saturday, July 28, 2007

Lightning Strikes twice

We went back to the pool last night, and not only did Nic want to go, he went right in. And he did it without the encouragement of his friends (since it was just us this time around). Not to say we didn't have our own adventures, but at least it looks like we can at least go back.

We had a good time. Now it's off to the autism conference and time for me to relax (ha!). I'll try to post from the conference.

Thursday, July 26, 2007

Survived another trip to the city

But barely, Nic was nearly picked off by a speeding van on our way to the train station. Holy cow. But he wouldn't hear of our not going, so we hopped the train and on we went.

It just blows my mind how my kids are safer in a way in the city than suburbia.

It was fine, though. More elevators and a good walk. The kids are falling asleep in the other room, so I'd better get them upstairs and ready for bed.

Life is good.

Tennis, anyone?

A local college is running a free tennis clinic for the disabled in our area. Once a pretty competitive player myself, I thought this may be a good way to get my boys interested.
I have no pics (since I was working with both of them, hand over hand, on their respective swings--tricky, since G is a southpaw), but I THINK, I HOPE I may have opened a new door to them. We'll miss next week's clinic, but we should be able to make the remaining four. And I think they will actually want to come back.

And this may be a good OT exercies for both boys, working on upper body strength and eye to hand coordination. I had a vicarious thrill holding the racquet, connecting with the ball, and making the ball land in a fair area of the court with both boys. I can still play. I'd love to be able to play this sport I love with them both.....

Wednesday, July 25, 2007

what a week....

We have a hit a variety of highs and lows I have yet to record, but I'm still processing everything. A trip to a new playground yielded much success and enthusiasm--we found a larger castle playground that is better contained, has easy access to bathrooms and is well shaded.

And, far enough afield from home so that we don't have to deal with people who know us.

Sounds good? Well, it was until I made the mistake of meeting friends there yesterday. Apparently, Nic feels he needs to make me pay for any social interaction I have on these outings, because among other infractions he

-Told another kid to get the F8ck out of his way (yes, my kid, who knows but never uses this word)
-Spat water from the top of the slide onto another kid's head

I'm kind of thinking that the kids there (the same kids who kept telling on him) were also egging him on. Which sucks. Am I going to stop going there? No way. I'm sure we'll meet those kids again, and I'm sure they will deal.

Oh, and then there was the church experience (eye roll). Last Sunday, Nic was lying on the floor under the pew. We sit in the back and I thought "he's not bothering anyone." And then he somehow wedged his leg from knee to foot at a 90 degree angle from the floor. And he started wailing.

Me and five other adults managed to calm him down and pry him out after about 10 minutes. I guess we should have left, but I didn't want to 'reward' Nic for his misbehavior.

We'll continue to go to church. He has to learn. But he makes it hard. And the looks. Again, I guess I should have left with my head down in shame, but I stayed til the end. Well, this is my life. Cloistering my kids isn't the solution, so everybody else better get used to them....

Wednesday, July 18, 2007

Totally don't get the object tossing

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.

Monday, July 16, 2007

Burnt Out on Blown Away

Nic continues to astound me. I accepted (reluctantly) an invitation to my friend's pool today, knowing that it could end in disaster, that Nic could very possibly wreck everyone's good time by refusing to get out of his socks and sneaks and get into the pool. This is the kid that blew off Splash Week at the Y in the waiting area playing with the ball maze instead of learning basic water safety (like little brother).

In a fit of 'you ain't seen NUTHIN' yet,' Nic not only willingly changed into his trunks and shucked his footgear, he was in the pool having the time of his life nearly the entire time we were there. If it doesn't sound like a big deal, then I am clearly not doing my job as a writer. This kids categorically refuses to go into any pool at any time.

Well, some fudge factors may account for this strange turnaround. It was a great layout; there was plenty of family-friendly (read: not too frightening relatively shallow) water and things to do. Plenty of kids to play with. And never underestimate the power of peer pressure--that my friend's boys 6 and 4 (and NT) were in the pool having a great time and that little brother was having his own blast made for compelling evidence that Nic needed to join in.

Attaching another triumphant picture from a triumphant couple of days.....

Sunday, July 15, 2007

Great stuff and OMG I need a script.....

Great stuff first. Nic went into the ocean for the first time since 2001 yesterday. It was a struggle to get him to take his shoes off, but bit by bit, his aunt, uncle and I (with the help of his cousins and little brother) got his to shuck his shoes and socks, then his shirt. Then he took me by the hand and said "Come on mom, let's go in the ocean."

My heart just soared. I have always loved the ocean and swimming in general, and it breaks my heart that I haven't been able to get Nic interested. So yesterday was, I hope, the first in a long journey to getting him lessons and swimming. It's only a first step, but I'll take it.

But the downside of this was that coming out of my brother's driveway I hit a parked pick up truck (I should preface this with my brother lives on a hellaciously narrow street and people insist on parking on it when they have perfectly usable driveways, but anyway....).

I have plenty of experience with totalling cars (I have totalled two in my driving career). Fender benders? None. I had NO script. I panicked. "What do I DO??" I asked my brother, who still marvels at my ineptitude in some situations. He advised me to calm down.

I sat in my van to get my info -- actually, I needed to collect myself to deal with the woman who ran out screaming from her house. I thought I'd die. I pulled myself together and went across to confront my destiny. My brother was back, looking at the damage. Fortunately, just a dent to their bumper, a skin to mine. But still. Dents cost.

So we exchanged info. I'll try to keep insurance out of it. If we can't, we can't and we'll deal.

But she was a lot nicer when she saw what a wreck I was, and I guess it helped that I mentioned I had two autistic kids, one who kept me distracted enough to hit the damn thing to start with (as a coda, do you think they moved the car to allow me to back out? Of course not. And their driveway remained empty...whatever).

So the upside? Hey, I could have racked up the van on the way home and I didn't. It was an inconvenience, fortunately nothing more.

Now I'll know what to do next time I hit a parked car.

But there were good things. DH is away at a meeting. I had to take the boys to church and I had lector duties. Never did it before. Guess what, the boys were fine, and I had plenty of help around me to help manage them. I never would have guessed that the help was available, but I never asked before.

And my fellow lector has a son on the spectrum. I made a new connection without realizing that it would happen, making this step.

Overall, it's been a great weekend, and Nic has been blowing me away with some of these things that he has never done before...until now. Gives me a lot of hope.

All I have to do now is figure out how to put that fender in my budget for this month....

Here's Nic.

Saturday, July 7, 2007

Trains vs Elevators?

One of the fascinating things about having two children on the spectrum is how different they are. It was obvious that Nic had something going on almost from the moment the nurse placed him in my arms after he was born. Gabriel, on the other hand, looked 'normal,' but it was only because of constant vigilance on my part that he was diagnosed on the spectrum 10 days before his third birthday--and the clinical psych who handed me the diagnosis agreed that you really had to 'look for it' to understand what you were seeing.

They act like fairly typical brothers. They like each other, for the most part; they fight; they tease each other, and despite the nearly four years that separate them, they play pretty well together.

But they certainly have their own interests. Nic likes elevators. Um, correction. Nic is obsessed with elevators. I suspect he is a little afraid of them and has mild clautrophobia, and this is his way of dealing with that anxiety. Gabriel likes elevators well enough and will tolerate the countless rides Nic insists on, but doggone it, his thing is trains. He loves him his trains.

We have the prerequisite train table and accoutrements. Nic got a lot of mileage out of them and will still like to set up a track now and then. Gabriel, however, 'settles' for it. He's gunning for the 'real' model railroads, and he LOVES riding the train into the city. And Nic likes that well enough, because the train will lead him to elevators to ride.

Sometimes I feel like I am living in my own coral reef watching the symbiosis between my clownfish and my anemone. And if you've ever had the pleasure of witnessing it first hand, it's a wonderful sight, indeed.

Friday, July 6, 2007

Welcome to ASHarmony Blogspace!

We've been getting some great feedback and questions about our new Website (I need to figure out how to get it on my networking bar). To answer some key questions, I'm actually going to devote some of my blogspace to it.

Number one: there is nothing to join in the monetary sense...we're free, providing a service that's needed.

Number two: One of the biggest problems we see in the autism community is its balkanization--parents, providers, and educators are all in their own little groups, complaining about the other groups, and while support is happening, not much else is. We're looking to break those invisible walls and get everybody talking together to further the development of our kids....and our own understanding about what it is to be an autistic living in an NT world.

That's our story, and we're sticking to it.