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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11 Comments

  1. It is amazing what a difference a year makes-the perspective gained and the confidence in our love as parents. it can make the tough days easier to remember these moments of clarity.

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  2. Its amazing what a difference that year has made for him! I think it has a lot to do with how you would stop at nothing to get him the therapy and special attention he needed and deserved! You are such an amazing mother :) There is nothing like watching a child learn and develop.

    You really are an inspiration to me, even if I don’t have children yet.

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    marfmom Reply:

    Aw thank you!

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  3. Great outlook, and gorgeous picture!

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  4. His progress is because you and Mark would not accept “NO”. You two are the biggest reason why M and the baby will achieve whatever they want to achieve. You rock!!!

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  5. What a great post with such a beautiful picture that captures a mother’s true love for her child. I glad to hear how much M. has improved; I am sure that gives you hope. I think for all mothers our days can be so long but the years way too fast.

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  6. And there’s that inner strength and resilience that just oozes out of you… The journey that your family is on is both heartbreaking and beautiful at the same time. There’s no doubt in my mind that God knew exactly what He was doing when He chose you as M and Baby J’s mom.

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    marfmom Reply:

    Thank you :-)

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  7. Maya – I loved this post so much. What a lot of things to celebrate…. So glad you shared this!

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  8. This is really uplifting, Maya. It seems your son has made some remarkable growth over the year. I am sure you have done everything possible to ensure this will continue. Both of your guys are absolutely gorgeous! Barb Shields

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  9. Hi
    My name is jenna and I came across your site. Your family is an amazing, wonderful family. You are all inspirational hero’s, Your kids, are courageoues and determined fighters. Brave warriors, and smilen champs. I was born with a rare life threatening disease, have been diagnosed with 12 other medical conditions, have had 29 operations and I am in constant severe pain everyday, all the time. I also have developmental delays, Anxiety difficulties, reasoning issues, reapting things and problems with change. My mom believes I may have autsim. I love it when people sign my guestbook. http://www.miraclechamp.webs.com

    [Reply]

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