Musings of a Marfan Mom

Big Advances

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It’s been a busy few weeks on the Menininho front. I’ve gotta say…pushing for therapy was the best thing we could have done. After 3 sessions of speech therapy we’re already seeing improvement. I’ve noticed M. engaging with us more than usual when he wants something. There have been more episodes of pointing during breakfast to whatever foods catch his eye and banging on the sink when he wants his sippy cup. This kid is motivated by food and so for right now I’m worrying less about him getting a balanced diet and putting more focus on rewarding him for pointing. If he wants to eat mostly bread, yogurt, cheese, raisins, bananas, grapes, and applesauce for a time, so be it.

He and I have also toured three different group therapy centers (basically therapeutic preschools) since I was successful in my appeal for him to be approved for that service (did I ever blog about that?). I can’t wait for him to get started! Unfortunately the center we love is full right now and we have to check week to week to see if they have an opening. We’d appreciate any good thoughts/prayers/vibes you care to send our way that they have an opening for him soon. Menininho really responded to his visit there and not only do they have a 1:1 staff to child ratio, they also have a speech therapist, occupational therapist, and behavioral therapist on staff. Mark and I are confident that the program will not only help M. with his social interactions and attention to activities, but his sensory issues as well, not to mention give him another place to reinforce his signing.

Tuesday night was positively thrilling. I was away at my first ICAN meeting (more on that next week) when I got a text from Mark that read “ :) .” When I called him on the way to the car he’d only say he had some good news for me. Not gonna lie…I was expecting him to say he’d reached the #1 spot in gold level for Starcraft 2 or that something had worked out really well with his project at work.

Turns out? I was wrong. OUR KID SIGNED! Yes, while I was gone, Mark spent a half hour with M. and a box of raisins, working on the sign for “more” (the one The Man is having us focus on). While M. has occasionally has taken our hands and made the sign with them, but never done it himself. Until Tues. night. I was so excited I jumped up and down, called my mother (it was midnight her time), tweeted it, and made it my Facebook status. Yes, I told you I’d shout it from the rooftops.

Yesterday I was able to get Menininho to sign for me a few times. He is by no means consistent with it but that will come with time. I am just over the moon that my son is able to use a form of words to communicate with us! Hopefully the screeching will stop. And this gives me hope that the verbal words will come with time and that he’ll be able to learn more signs.

I know some may say that he just needed extra time, but I don’t buy it. We’ve been signing with him since he was 9 months old. We’ve tried all kinds of methods to get him to mimic us. I know it’s the therapy, and I can’t wait to see what other advances are in store for our little boy.

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14 Comments

  1. so glad you are finding things that are working for you – sending good vibes for a spot to open up at the preschool you want!

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  2. So excited for M & happy for you three! It is awesome to see your child advancing & I’m sure that is multiplied by like a million when the advances come with more difficulty! You are one diligent mama & M is so lucky to have you for parents 😉

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  3. I was so excited for you when I saw your facebook status! I know more good things will come and I’ll keep you all in my prayers!!

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  4. He is doing so great! That is awesome! We are getting the ball rolling for speech therapy for our little boy and I am excited to see how much it will help him!

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  5. I’m so glad there’s progress! Hooray!

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  6. Fantastic! Way to go Maya. I hope your school comes through – you are so fortunate to have a facility like that as an option!! Also, his diet looks great to me :)

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  7. That’s what makes you such a great mom. not only pushing for your son, but Taking Extreme Joy in the accomplishments. Way to go for all of you.

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  8. Considering that Chaela’s diet consists mostly of M&M’s, I think you’re feeding him just fine.
    Congratulations on his first sign! I hope he gets into the school you want!

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  9. Yay! That’s definitely progress! My brother used to give his daughter M&Ms every time she said “Dada”. I think you’re fine doling out applesauce and raisins for signs. 😉

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  10. That is awesome news Maya!!! Sounds like M is making great progress in such short time since he started the program. Hopefully the preschool you guys are looking into with the 1:1 ratio opens soon; it’ll be so good for him. And yay to feeding him whatever he wants at the moment, as long as he’s eating; right?

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  11. I am so glad you feel like you are making progess. It doesn’t matter what anyone else says, trust your gut. When you feel something is wrong with your child, pursue it. You will never regret that you did, but you might regret it if you didn’t.

    You are doing a great job as parents. I hope you are continually blessed with these little miracles. And that you get into the school. Best wishes.

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  12. Ahh! He is so cute!
    Great news about the signing!
    Lennon still uses some signs instead of words, signs are by FAR easier for her than spoken words.

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  13. Glad to hear it’s working out well! My 29 month old starts speech therapy this week so I can’t wait to see what happens!

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    marfmom Reply:

    I hope s/he connects well with the speech therapist and makes great gains! :-)

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