March 2009

In our last IEP goals recap from last quarter, the J-Man had a great nine weeks overall and showed great gains. This past quarter just ended last Thursday, and our little superstar continues to make great strides toward what we thought were some pretty ambitious goals for this year.

As a refresher for those curious about how we do things around here, the quarterly evaluations are done based on how well the kids are progressing toward meeting their IEP goals for the entire year, and then they’re assigned an evaluation code based on the following scale:

1 – Insufficient progress to meet IEP goal by end of year; below expected mastery of goal at this point in the year
2- Skills are emerging; mastery of goal is still inconsistent; student needs support to meet goals
3 – Consistent progress toward goals; on track to meet annual goal
3* – Consistent progress toward goals + some evidence of application and independence (Not sure why they need another 3 score here, but whatever. “Application and independence” are definitely two words we like.)
4 – Annual goal has been mastered; able to generalize the skill independently in multiple settings.

As I mentioned last time, don’t ask me why they felt the need to add a 3* in between 3 and 4 rather than just fix the scale to begin with. But anyway…

We rounded the halfway mark of this year early in March, so in light of that, his progress toward goals he has a few more months to meet is awesome.

Here are those categories and all the great stuff he’s been up to lately.

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Today, instead of the (incredibly anxiety inducing for me) horseback riding the AU classes were supposed to go to, we went to one of those Jumping Inflatable places. (Weather… what you gonna do?) I took the J-man, because a) Tim was working on the flooring, and b) his teachers promised to corral him for me. I believe the exact term was “muscle him around.”

We got there, and Ms. Jennifer (his teacher) immediately took him from me, pulled off his shoes, and away they went into the jumping thing… where the J-man was almost immediately knocked down at the bottom of one of the slides. This did not bode well for the rest of the day! However, with lots (and lots and lots) of sitting on Ms. Jennifer’s lap, then sitting beside Ms. Jennifer, then getting on his knees to sort-of bounce Ms. Jennifer, and then STANDING UP and jumping near Ms. Jennifer… it got better!

Because I keep having these occasional pesky (read: painful) Braxton Hicks contractions when I stand for too long, I sat at a table and talked to some of the other parents instead of watching, but somehow, parents of AU kids of all ages seem to know who the J-man is, so every time he did something new, 6 people would start calling out to me to come watch. That? Was awesome.

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Nesting is Hard Work

by Tim on March 25, 2009

Haven’t had much time to blog lately. Between trying to get a bunch of work projects wrapped up before the J-Man’s three-week break from school starts – which won’t happen since it ends tomorrow and I’m nowhere near done with anything – and the baby’s impending arrival becoming more and more (or less and less?) pending, I’m beat.

The absolutely, drop-dead, gotta do it project we have to finish before the baby comes is flooring. (Really, there are lots of projects that are critical, but I’m in denial about them.) It may not seem like the most important step on the baby to-do list, but the little room off our bedroom where the baby will sleep has been the home of our two cats for the last three years. I’ll leave out the sordid details from there except to say that the carpet needs to be ripped out.

We decided to slowly but surely (i.e., as the money fairy leaves unmarked 10s and 20s on our doorstep) to replace all the carpet upstairs. Just buying the first 200ish square feet of it with all the stuff that goes with it definitely brought some stimulation to our economy last weekend courtesy of our federal tax refund. Well, we had some money for 24 hours at least. But we gotta do it.

We also had to move out an entire bookcase full of books from that room, and the only place that could go temporarily was into a closet. Since wood flooring needs to acclimate to your house for a few days before you put it down, 11 boxes of it are laid out in another bedroom, which I also had to clean out last weekend (it’s been our junk room for the last four years). This involved cleaning out decades of strata of old papers, files, mementos, and just plain junk – generating a few hundred pounds of paper and cardboard recycling and trash. The only real good news is that we reclaimed some shoeboxes we can use to make shoebox tasks and games for the J-Man.

The big fun for today was me moving a giant elliptical machine by dragging it 25 feet across a carpeted floor to its new and hopefully final resting place in our bedroom. Being able to move this monstrosity at all – let alone across the house – did make me feel abnormally manly and stuff, but the feeling was short-lived as now I just feel sore, tired, and old. But anyway, this leaves the baby’s new room almost empty. So, next is ripping up carpet. Destruction!

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Of Grandmothers and Fruit Salad

by Mary on March 23, 2009

When I was growing up, I had 2 grandmothers. (I know, most people have 2 grandmothers – or more – but mine were still living then.) One of them liked me a lot. The other didn’t. There was never any doubt, and everybody knew nothing could be done to change the one who didn’t like me. It wasn’t just me… she only liked one grandchild, although I do feel there was a special “non-space” in her heart for me based on our differences.

So anyway, my grandmother that liked me (let’s call her Mozelle, because that was her name – cool name eh?) was a do-er, a maker, a “we don’t have much money but we can show we love you in a different way” kind of grandmother. When I was sick, or just needed a mental health day, I could spend it on her couch, watching The Price is Right and her afternoon “stories” on CBS. She let us cook in her kitchen, and I’m sure we made HUGE messes. There was always some sort of snack for us in her kitchen, whether it was fresh parched peanuts, or baked sweet potatoes, or even just saltine crackers and homemade butter. I have 14 first cousins on that side of the family (Tim says that getting married to me was a lot like My Big Fat Greek Wedding except with Southerners) and we used to play in the yard at her house while the adults sat around and talked after Sunday dinner. She wasn’t this goody-goody kind of grandmother – there was always that little zing of mischief.

I was very sad that Mozelle wasn’t alive when I married Tim, nor when I had the J-Man. I have an afghan she crocheted for my first marriage, and I pretend it’s for this one – you know, the real one. I bet she did too. I have a pair of baby booties she crocheted when she knew she was dying… so that each of the granddaughters would have a pair for our first child. We framed them, and they hang in the J-man’s room. By that time, she could only crochet for about 5 minutes at a time before her hands would fall asleep, and I can’t imagine the amount of work that went into them.

I had a dream awhile ago. I was sitting on Mozelle’s front porch (as opposed to the side porch) rocking, and watching the J-man play in the yard with his cousins. She sat in the rocking chair beside me, and we just talked. She saw how great my kid is, and kissed him all over, just like she did with all the great-grandchildren born when she was alive. We didn’t talk about anything major, or earth-shattering, but I knew she knew I was happy. That was enough for me. I like to think she’s somewhere out there, smiling down at us, even though I’m no longer her “Little Miss America.”

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Bubbles and Babies

by Mary on March 21, 2009

For the past few nights, the J-man has been playing with a bottle in the bathtub. We keep one there so I can semi-easily fill it and rinse his hair. He has figured out that if he holds the empty bottle under the water, it makes bubbles. He LOVES the bubbles. On Tuesday night we actually got him to say “bubbles” with actual Bs (instead of the “mmmmb” sound he normally makes)! It was very exciting. On Wednesday night though, he figured out that we were asking him to say “bubbles” instead of making a sound… so he switched back to the “mmmb” sound! I wonder if this is one of those times where kids are learning the “rules of language” and start being strict with the rules even though English is not – where before now, the kid would say “feet” but has learned that the plural of many words is made my adding an “s” to the end, so they say “foots” now instead.

There has been a barrage of sensory needs coming from the J-man lately, and we’re trying to figure out how to stop the oral seeking behavior of biting Mama. So far, a wet washcloth will do the trick, but we’re trying to find something a little less shirt-soaking. His teacher has suggested heavy shoestrings, because they are easily portable, and will still provide that cloth resistance he likes.

On the new baby front, I was at the doctor Wednesday for another “tummy check” visit, when she told me that I’m measuring 2-3 weeks ahead. Last time I did that, but last time I hadn’t lost weight during the pregnancy either! I asked if my “natural padding” would affect that number, and she said it MIGHT add 1 week, but definitely not 2-3. Come on baby – hang in there until May! We’ve been nesting, but of course for us that means major projects. We’re going this weekend (at some point) to buy the wood flooring for the 2 rooms, which then has to acclimate to our house before Tim can put it down. He also will be pulling up the carpet (and tack strips) and readying everything for the wood floor. I know he can’t wait!

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Diagnosis Day

by Tim on March 19, 2009

One year ago, we spent that March 19th in shock and in tears, stunned and lost. I can picture every part of that small office and the way I kept gripping and releasing the arm rest of the faux leather couch. I can still see the doctor looking at us, eyes full of understanding, clipboard and notes in his lap. I still remember the calm and kindness in his voice, an even tone but direct and honest and spoken through a chorus of moanful sounds from the J-Man, though I remember few words other than ‘autism’.

My fingers still know how the fabric over Mary’s knee felt as I awkwardly patted her in an uncertain attempt to comfort both her and myself. She was bouncing him up and down trying to calm his overloaded, tired body as he whined, mentally and emotionally exhausted from the evaluation. I remember how I put my flat, left palm across his back – in those days big enough for me to span his entire back – pushing and rubbing in some gesture that lacked any clear purpose other than parental instinct.

I recall thinking, how many times has this doctor had to sit across from parents and tell them this same news? I don’t remember the exact first words out of my mouth after hearing the diagnosis, but I know the meaning behind my question – What do we do now? I wrote down everything he said as if my pen could save us, like maybe I could draw some road to a future we could no longer see.

I remember the plainness of the 70s-era office building and the trees hesitantly coming into bloom outside under a cloudy sky. I can re-feel the sting in my hand from banging my palm on the gear shifter in the car. I can see as much of the way home as the parking lot, but nothing about the drive itself. That road had disappeared too.

I wandered around for a while in our backyard, lost and angry and feeling sorry for myself, probably justifying my self-indulgence by saying over and over how unfair this was to him. I let dread and fear and despair and hopelessness crash through me like terrible waves. I could feel my arms flailing without purpose at everything and nothing, like a man desperately trying not to drown. I remember saying to myself that I was going to kick autism’s ass, not having any idea what that really meant; it was just the first thing that popped into my head.

Then at some point as the clouds yielded a little that afternoon, I could feel something -somewhere right under my sternum – harden like a fist. It didn’t feel like anger or hurt or some odd form of grace. I suppose it was pure, primal resolve. I remember the thought coming to me, He’s the same today as he was yesterday. He is our beloved son and we will do what it takes, even though I had no idea at all what that would mean either.

But on that day, that was enough for me. I went and held him and rocked him and kept saying, everything’s going to be OK, over and over again. It was a mantra at least as much for my benefit as for his, and I still say it often when it’s hard to find any other direction than down.

Things have changed a lot over this past year. My perspective has evolved and grown and in many ways been transformed. But I think I figured out what the point is of observing what I’ll call ‘Diagnosis Day’. We need to remember how we felt. All that hurt and sorrow and anger reminds us of where we started from and how far we’ve come. It helps us to see the same feelings in the eyes of other parents and know how to reach out and comfort them. This is what helps form the foundation of our compassion.

And then there’s remembering that on the morning after the diagnosis, the sun still came up and a new day began, as it has every day since. And he really was just as wonderful and beautiful and perfect as he was the day before, if not even more so, just as he continues to be every day. And the resolve at my core grows anew each day as grace slowly and continually seeps into each crack inside me, bringing with it the love and joy to fill and heal the places that were once raw with hurt and anger and grief.

This morning, I was frustrated and exhausted and stressed and frankly scared about all the challenges and changes that are to come. I’m slowly learning to be OK with this since it’s just part of who we are sometimes, but there are days like today where that’s not easy.

But as I look across the room at Mary smiling and rubbing her hand across her tummy over the new wonder growing inside her, and watching our son laugh and smile and spin and say with pride and conviction one of his newly-discovered words, they help me remember that everything really is going to be OK and that I truly am the luckiest man in the world.


How Does One Observe ‘Diagnosis Day’?

March 17, 2009

We are approaching the first anniversary of the J-Man’s autism diagnosis. It’s hard to believe it’s only a couple of days short of a year now. It seems like one should observe these anniversaries in some fitting way, but honestly I’m not sure what that would look like. They say you quickly get to where […]

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Handy Handouts

March 13, 2009

[Post edited 11/6/2009 as the Handy Handouts site has undergone a major upgrade.] While talking to the J-Man’s teacher about getting some picture communication gear, she told me about Super Duper Publications. They have an extensive catalog of useful products (haven’t ordered anything yet, but probably will), but our link for today is for their […]

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