Sunday, April 20, 2008

on into Spring


A busy couple of months left us with no time to blog, but finally we have a quiet afternoon to catch up!

We had summer temperatures last weekend and took advantage of it by hiking in the hills above Berkeley (or Orinda if you look East). If you look really hard you can see the Golden Gate Bridge in the background behind Alex.

Alex is officially closer to 3 than 2, having enjoyed his half birthday in the middle of March. He has all of the sudden started acting like it, too. We are happy to be moving forward with him - the terrible twos have been pretty difficult with our strong-willed little one struggling to make himself understood and frustrated when 'uh uh uh' doesn't cut the mustard. He is now using whole sentences and lots of words we actually understand. And he has learned to be patient for 15 or 20 seconds before dissolving into a tantrum when what he wants doesn't appear instantly. He took charge of the car keys recently and knows exactly which button locks and which unlocks the car. After doing his job of unlocking the car for us, he is happy to hurl the keys in the front door and onto the floor...luckily he hasn't insisted on driving yet.

We learned in February that his vision problems are likely more severe than we'd originally thought. In addition to the nystagmus that he was born with, he has damaged retinas (of unknown origin; though the eyes are healthy now he has scarring inside his eyes that is pulling the retinas across the macula). The retinal specialist we saw in February says he likely has no central vision and probably cannot fixate on an object with both eyes at the same time (since the damage is in a different place in each eye)...which means he likely lacks any kind of depth perception and probably has trouble with details (like facial expressions and identifying faces in general). We've spent the last couple of months in a self-directed crash course on visual impairment and have found all kinds of helpful folks in various online groups. What continues to amaze us is that, despite the dire diagnosis, Alex seems incredibly unencumbered by whatever vision he lacks. To watch him interact with the world you'd hardly know he has an impairment. This is both a good and a bad thing. Good that he is doing so well, despite his disability, but bad because we always have to remind ourselves - and others - that he needs different kinds of help when learning new things. (Like, he needs lots and lots of verbal clues. Remembering to be vocal has been a particular challenge. With our other children I perfected 'the look' that spoke volumes when they needed motherly intervention. Alex is oblivious to any 'look' I might give and forces me to express myself with words, something that doesn't always occur to me right away. So much for all that prior Mom experience.) We'd started work with the school district last Fall for Early Intervention services, and are in the throes of his first IEP (Individual Education Plan). We've also found a warm and caring Montessori school that he will start this summer. His in-home daycare provider has been perfect this last year, but it's now time for him to venture into the wider world of peers and teachers. Transitions are hard for Alex, so we'll be spending the month of June doing damage control. In the meantime, we're enjoying the spring in California.

1 comment:

Sarah k said...

OH Lynn, I so hope that you get to the bottom of Alex's eye problems soon. I know that as a mother you have to be agonizing. I will put Alex in my prayers!