Tuesday, October 7, 2008

Love and Survival, Part II

Love: I'm not even sure it makes sense to try to describe how I love my son. I guess it's like the love most parents have for their children, but since I only have one, I have no basis for comparison. Our child is very special. Not just special needs special, but special in the totally pre-euphemistic sense of the word. His smile lights up his face, our faces, and the faces of everyone he's with. He gives great hugs and slobbery kiss-like things. He loves books. His awkwardness and delays are quite charming. He walks like a tiny Frankenstein and sleeps with his butt in the air. He has developed a habit of taking our hands, bringing us across a room if necessary, to ask for things in the only way he can - by putting our hands on what he wants - videos, outside play, blocks. I love being dragged about my home by this little authority figure in a puppy sweater. I love how he smells (usually), how he picks up his sippy cup so earnestly and drinks his milk like he is tasting the sweet nectar of life itself, and how he laughs at many, many things. Like velcro and the swiffer wet jet.

Then there's the love for my husband. My exhausted (see below) sweetheart, who dreams of hiding in a cave for a long, long time to play d&d wows me every day with his tender and funny interactions with our more-than-a-handful child. He gives me frequent backrubs and is patient with me as I bore him with the tedium and stress of our over-scheduled new life (see below).

Survival: We are tired, oh so tired, all the time. Our son doesn't sleep well. Though he makes progress every day in little ways, the milestones are a long time coming. We see everything coming for months, and sometimes years. Unlike many of my friends with typically-developing kids, we never just "wake up" to find that our child is doing a new feat. We are thinking of having a first word party, because already we've been waiting about 1 year longer than most parents do. We might even have a bye-bye party, because he doesn't wave bye-bye either. Though there are benefits to this slower development (we still don't have to run to catch our toddler; he just doesn't move that fast and he has little interest in leaving the stroller when we're out), the downside is that we put in a lot of effort, and our rewards come less often and less dramatically. He has 4 therapy appointments per week, not including any extra appointments, like our upcoming visit to the M.I.N.D. Institute, regional center service review meetings, dentist appointments, regular doctor check-ups and sick visits. The therapies could be an entry unto themselves, but for now let's just say they are wonderful and our therapists are all incredible, dedicated, knowledgeable people BUT...we end up with a lot more on our to-do lists beyond the actual time spent in session. There is homework, and sometimes special supplies are needed. So, we don't just play with our child; we know we should play the right way. Here's what I got in the mail yesterday: a bill from a medical provider related to his care, a form to fill out related to his care, and a letter thanking me for my donation to FRAXA. There's also email and phone calls related to all of the above scheduling, doing, early intervening. I have honestly thought of hiring a personal assistant to help us with the logistics of it all.

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