autism days

The amount of time I live autism is not very well reflected in my blog postings. Probably because when I sit down to write, I want to not think about autism.

But if my thoughts were recorded on a pie chart, Noe's autism would make up the largest portion of the circle, and everything else would be small slivers. Let's just say you would be a very obese person if you ate my piece of autism pie every day.

And I tend to have one of three days related to Noe's autism.

angry autism day. This is usually triggered by an especially difficult day with Noe or some other factor related to his autism that goes wrong. For example, last month his lead ABA-VB therapist called to tell me that she may have to leave his program for personal reasons. It would have essentially ended his therapy program and I would have been left to start from scratch or wait until next fall to continue with another doctorate student. Luckily, this had a good ending and she is still with us, but not before I had a full-on panic attack that ended with the worst migraine of my entire life. These days are infrequent (and becoming more rare), yet very intense. I curse autism and often cry and stomp around my bedroom unless I am able to escape the house for a run or bike ride. I often feel a lot of self-loathing....Why did this happen to us? What did Noe do to deserve this? On these days, autism feels like the worst possible life sentence.

average autism day. This is most days. My life feels normal, blessed in fact. Noe is Noe. He has his struggles and issues, but so does every other kid. While some kids take tennis lessons and go to chess club, Noe has speech therapy and ABA-VB. It is not torture for him. In fact, he looks forward to seeing his therapists and working on the activities and lessons they have prepared. He makes progress, but it is often hard to see day to day.

It is always interesting to run into a parent at Noe's school that I know from somewhere else, such as from Asher's preschool, or my job, where I tend to meet lots of hyper-academic parents. They are excited to find out I have a child at the highly-regarded school. Immediately, they want to know his teacher, whether or not he is in the GT (Gifted & Talented) program, etc. I tell them, without any self-consciousness (I am SO over that) that Noe is in the autism program. And then I get the look. Often enough, I have to remind myself with a bit of amusement that the look I am seeing is.... PITY. Why do you pity me? I want to say. I have the best kid ever. Not that he doesn't cause me a lot of worries, but he really is great.

super autism day. These are also pretty rare, but special. These are days, actually moments, when I get a glimpse into Noe's soul and see unlimited potential and his true autism-free self. Sometimes it is a knowing smile he gives me. Often, he is riding his bike and his autism just slips away completely for a few precious moments. These are also the days when I can step outside of my every-day life for a moment and see the ways I have experienced true personal growth as a result of dealing with Noe's autism over the past five years.

Would I trade the past few years of "personal growth" for a more average parenthood experience? In half a New York minute. For my sanity as well as Noe's well being. Accompanying my exponential personal growth curve, I've also experienced some nasty side effects, namely a rather jarring crisis of faith and enough anxiety to keep an entire Paxil factory running overtime through the recession (full disclosure: I am actually not on any anti-anxiety medication but probably should have been at various points over the past five years).

Once in awhile, I will be in the bathroom and suddenly I will pull my hair back tight and examine my face in the mirror. The permanent dark circles under my eyes. The strands of gray hair making an early appearance. The worry lines. I swear I can almost make out the word autism written on my worry lines.

These are my days, a new path, our new journey. And I have to say, the view along the way is pretty damn amazing.

Kiva Credit

I love Kiva's (relatively) new program that allows money from partially-paid loans to be put back into the lender's account immediately for use. It feels like a multiplying effect on the loans I make. I usually only have to add $10-25 each month to my account in order to make a new loan and I use whatever "credit" has been repaid the previous month to finance the rest. It feels like nothing out of my pocket....and this is coming from a true penny pincher.

Kiva.org....the best idea ever!

This Week in Snow

I suddenly feel like I live at a Rocky Mountain ski resort. Thirty-three inches of snow in Reston this past weekend, with a second storm (this one officially a blizzard) likely to bring us another foot by day's end. Then we'll have a break this weekend with more snow expected on Monday.

It has been quite an adventure. We lost power for a better part of the weekend. I have to literally climb a snow drift and slide down on my *ss in order to reach our grocery store and then pray that it's open and there is food on the shelves. We haven't seen our mail carrier, garbage service or newspaper in days. In fact, our mailbox is buried in a huge drift of snow. Hopefully, we don't have any unpaid bills lying frozen inside. Oh yeah, and school.....oh dear school how I love you and miss you so. My kids haven't been to school for so long they probably won't be able to recognize their teachers when they finally come back.

The past week has been at different moments.....a relaxing, unexpected vacation, great memories made with our kids, anxiety for a husband who has had to be in the newsroom at various points during the week, a huge test of my parental patience, and precious time to complete projects before my own job gets more and more demanding over the next few months.

A few of the things I want to remember....

*the boys loving the snow tunnels made by the neighbor kids in back of us
*making Asher put on a bike helmet so he could do his extreme sledding on the snow banks
*the boys needing hot chocolate and cookies EVERY time they venture outside, even if they're only gone for five minutes
*lots of board games and Asher making up new rules for games so Noe could more easily play
*RCC opening up the pool across the street from our house yesterday. It felt so good to get some real exercise and get out of the house. Noe must have floated on his back in a state of Zen for an entire hour.
*looking out my front window late last night and seeing Ed paying a cab and then trudging through the snow towards our house (we thought he would be working downtown and staying at a hotel until Thursday).
*our picnic dinner of bagels, carrots and hummus and pop tarts over candle light last weekend when we were sans electricity.

There are a few things I don't want to remember as well.....but overall, we've been fortunate. That we can all be in the house together for so long and not kill each other is pretty good in itself .

So today is February 1st and.....

Asher has already finished making Valentines for his entire class. Such a planner that kid.

I am already signing kids up for summer camps and planning our Disneyextravaganza in June. It seems light years away.

if I had made any New Years resolutions, I surely would have broken them by now. As it is, I am already behind on training for my first triathlon in April.

Ed is officially 11 months away from being vested in his company's defined benefits pension plan. I'm the daughter of a pension actuary, so that's just the way I roll. (Plus, I am still a little bitter that we missed the vesting period at the NY Times by just a few months).

we've already had four snow storms this winter, with another monster storm on the way this weekend. This morning I took the boys on a hike down to our neighborhood lake and we trudged through snow in order to reach the lake which was completely frozen over. I remember when Ed and I were discussing our possible move to DC and he asked me about the winters. I, having lived through a single snowless winter in DC after my college graduation replied, "It's the South, they rarely get snow."

today marks our 3rd anniversary of homeownership. I would like a divorce.