Not unlike all families, COVID-19 came in and reeked havoc on our lives but for a child like Abe - the upheaval in his daily routines and the inability to see his support staff did a real number on him. The last 9 weeks have been incredibly difficult as Abe struggles with not understanding why he can't go to school, why he can't go into a business to push shopping carts (literally his favorite thing ever) and why we can't go inside when we do get the opportunity to grab take-out. Not to mention, he didn't get to see his daddy, his super-cool bonus mom Lesli, his big-bro Carter and their sweet dog Lincoln (who he talks about endlessly) for a month while we worked hard to keep him safe. He's not been able to see his big sister and his brother-in-law-to-be either. Poor Abe's world got really, really small. With School and his private therapies - Abe has a team of well over TWENTY people to help him live his best life. As a parent of a child with complex needs (medically and educationally), it is beyond difficult for me to juggle working from home, care taking and attempting to be mom, therapist and teacher. When I let the school know that Abram was really struggling with understanding why his whole world changed and got turned upside down, they responded in a way that I did not expect! THEY MADE HIM VIDEOS. VIDEOS!!! If you know Abe - his treat is YouTube. He LOVES videos of people talking to him. After seeing him struggle for months on end in not understanding why he couldn't see his people - imagine my surprise when the school responded in the best possible way! They sent me these videos - just for Abe. It made me cry. To his school district - thank you so much for making these videos for him. It will be something I will remember and cherish forever. These little bits of kindness go so far with kids like Abram. It is much appreciated. |
About MeHello! My name is Erin. I am Abram's mom, a tireless advocate for UBE2A Deficiency Syndrome and a fierce proponent for medical cannabis. MOST POPULAR BlOG ENTRYJOIN US
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