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First Year of Pre-school is DONE!

5/30/2017

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Today was a bittersweet day for me as I watched Abram walk to the car one last time with his sweet aide, who won't be with him next year. When people take your child in and treat them as your own and understand them and their needs perfectly, they become like family and you worry that the next 1:1 aide won't be as great or that they won't "get" him like she did. It stirs another whole world of anxiety for me but the lucky thing is - next year he will be in the 4-year old pre-school with the same kiddos he had in his class this year - so hopefully that makes it easier on him to transition to afternoon classes. He is such an early riser (up no later than 6am, daily) that I worry afternoon class will be hard on him with no nap - but we shall see how it goes when the time comes. In addition, next year we are going to try for four days a week for the full class time versus just the three days a week for 90 minutes.  It will be an adjustment and he gets tired very quickly but I know it will be SO GOOD for him (and ME) to get some time away and do things for ourselves. He deserves to be around other kids and learn from other adults besides his immediate family!

Abe has come A LONG WAY this school year. He did (2) rounds of intensive MNRI therapy for (6) months out of the (9) months he was in school and has vastly improved in his ability to navigate different types of ground/terrain and can make several new sounds and is even saying "mama" every single day - WITH PURPOSE! This was something I worried I may never hear as his condition includes "absent speech". 

Abram also made a sweet friend who helped keep him in line (literally, as they had to go wash hands for snacks) and included him in play-time. I approached her mother at the "muffins for moms" event they had for mother's day and weeped at her as I thanked her for raising a kind child and she told me that Abram was her favorite and she talked of him often. So, we exchanged numbers and I hope that we get to have some play dates this summer. I'm thrilled to see the look on Abram's face when he sees her for the first time after school has let out. 

Abram has also grown taller, thinned out a bit and is SO FIESTY after we've officially been off of Klonopin for 6 months. I swear I've seen him gain more and more cognitively each month after we took away that nasty drug. He's come more and more alive and is nothing but a ball of energy from 6am - 9:30 or later but I will so take that over his days of being drugged up, sleeping and regressing on his skills. I will take my little tornado any day over what used to be our lives.  

This summer is looking to be a pretty incredible one. He's got a sweet new bike, loves his new little kiddie pool in the back yard and is RUNNING down the hill in our back yard when last year he had to hold on to the fence to get down the hump in the very back of the yard.  He never ceases to amaze me and BLOW MY MIND! 

Abram is my little fearless warrior who is out to prove everyone wrong and I love him dearly. He's taught me so much about life and love that I can't even believe that I get to be his mommy.

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    About Me

    Erin is a green-haired, tattoo-covered mama powered by sarcasm, iced coffee, and the occasional emotional spiral.

    She’s raising an incredible son with a rare genetic condition, advocating with sharp knowledge and a softer heart — because both matter.

    She's trying not to lose her mind in a house that includes her husband, her son, her mother, a team of no less than five workers, and approximately 3,000 daily interruptions.

    She’s got a sixth sense for fake people, a deep love for horror movies, and a soft spot for anyone who’s ever felt like too much and not enough at the same time.

    Erin doesn’t pretend life is perfect. She shows up messy, honest, and real—whether she’s in advocacy mode, snack-fetching mode, or “why is everything a mess” mode.

    ​She’s built of grit, wit, compassion, and just enough rage to get things done.​


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  • Home
    • About Abe >
      • Abram’s Viral Photo: The Wizard of Awws (Baby Ming) | Abram Mayhem
  • Blog
  • In the News
  • UBE2A Deficiency Syndrome
    • UBE2A Publication List
    • Abram's UBE2A Symptoms and Diagnoses >
      • Abram’s Pineal Cyst Journey: Insights, Updates, and Long-Term Care >
        • MRI Imaging of Pineal Cysts in UBE2A Deficiency
    • Why Genetic Testing
  • Helpful Links
  • Abram's Art

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