Musings of a Marfan Mom

One Year Later

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June 14th marked a year since the Menininho’s autism diagnosis. I’ve been thinking a lot about that day, how the doctor tried to offer some hope that maybe it wasn’t really autism and how I wanted to cling to that in those early post-diagnosis days, feeling peeved at the friend from church who would point out all of M’s autistic behaviors because maybe those weren’t really autistic behaviors. Part of me knew though, that they were, and Mark knew even before me.

A year ago…

…the Menininho had no speech, no signs, and no real recognition of language.
…if he wanted my attention, he’d hit me.
…would not come to us for comfort.
…preferred to sit by himself over by the bookshelf.
…would stim for nearly an hour straight.
…did not play appropriately with any toys.

Today…

…he has about 80 words and is beginning to use 3 word sentences.
…can ask for help.
…comes to us for hugs or kisses for booboos, real or imagined.
…plays appropriately with some toys.
…stims more frequently but usually for shorter durations.
…knows the names of several of the kids in his class (even if he doesn’t want to play with them).
…has increasing issues with anxiety and aggression.
…enjoys memorizing logos, particularly car logos.

I’ve changed, too. I’m learning about sensory problems and sensory diets. I can find humor in many aspects of autism that used to make me burst into tears. I appreciate “smaller aspects” of development more. I don’t doubt the diagnosis at all.

Yesterday, while waiting on class to finish, one of the other parents and I were discussing a soccer class we’d wanted our sons to participate in but in reality isn’t well suited for kids on the spectrum (another post in and of itself).
“Maybe next year,” the dad said. “I mean, M is going to get better. My son is going to get better.”

I gave a little smile and said nothing. I’m learning to not have expectations. This year, this year we’ve witnessed some unexpected growth and unexpected frustration. I am incredibly grateful every day for how far M has come. I am a lot more optimistic about the future, but more accepting too. The Menininho is a child with autism and while some days impossibly difficult, is going to be A-OK.

A year ago

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