Category: Family Synapse

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Dear IRS

Dear IRS, I just filed my taxes. I did my very best. It was a lengthy and confusing process so I’d like to give you some feedback for your non-mathy people, the ones who play fast and loose with the letter “y” sticking it recklessly onto the end of any word. The ones who preferred the word problems in math class and really wanted to insert themselves and ask, “Where are you going on this...

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Hangers

I recently found myself recalling our home renovation project to a friend. It made me go back to the Bowie House blog and re-read everything. I still can’t quite believe my community came together to make my home accessible for Aidan. Amazing! I have a few posts I’d like to re-share from those days. Enjoy! ***** Nineteen years ago Garreth moved my clothes from one apartment to another while I was taking final exams. We...

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Keepin’ it real cuz it’s all so hard

I haven’t written and I need to write. Also, I’ve been wanting to show you my new Stitch Fix outfits but it turns out taking pictures of me is hard. Me being camera ready is hard. I highly recommend that you go to Mary Evelyn’s blog to see how a real mom works the camera and then feel free to come back here for a giggle. This is me wondering if Liam is really taking...

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Food for Thought

Food for Thought – November 30, 2015 Notebooks for Peace “We look through the notebook we see all the work that they did and these are notebooks that will never be filled by kids who were killed,” Slate stated. There was Room at the Inn It has come to my attention that ever since Caesar’s pesky census drew thousands to the city of Bethlehem, rumors have been circulating around the region that my inn is...

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When Gratitude is Practiced

I started taking yoga this year and I look ridiculous. I chose yoga because, no joke, it was the cheapest excercise class I could find. It was weird and uncomfortable at first and I rolled my eyes at all the breathing we did and the nap we take at the end. And speaking of cheap, do I really need to pay someone to tell me to breathe and nap? Apparently, I do. On the inhale, move. It turns out...

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Food for Thought

Food for Thought – November 16, 2015 University to Employ, House Adutls with Autism New hires with autism could start coming on board by late next year and will be supported by clinical staff and graduate students, officials said. In addition to working on campus, those in the program will participate in life skills training and recreational activities. When she is five she’ll talk, right? But I guess more than that, there is an aspect...

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Notes from an Old Mom

We all know 40 is the new 30 and math is sometimes ridiculous and unhelpful, right? So I’m not really an old mom but I have learned a few tricks in my time with Aidan. When Aidan was little I blogged mostly for therapy and a little bit to help the world open their minds to my son. Now I think I blog to help, to connect and find those other people along the way...

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Happy Birthday

It’s PURA Syndrome’s first birthday. It seems like a strange thing to celebrate – “Hey, I know why my kid is sick!” Before Aidan’s diagnosis, as in, for the first 13 years of his life, we found things to celebrate even when we were struggling. It’s a matter of survival. I believe the Medical Mom’s eye is trained on good things. We got into our groove of living without a diagnosis for Aidan, still feeling...

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Meet Anthony – The Face of Resilience

Anthony’s story as told by his mom Elizabeth: Our baby boy, Anthony just turned 1. He just started rolling over and is trying to sit up. There was a time when he was a newborn when we didn’t know if we would ever see this. These are huge milestones for him. This is because he was diagnosed with Pura Syndrome. He has sleep apena and low muscle tone so he has a tracheostomy to help...

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Food for Thought

Food for Thought – July 13, 2015 The Disabilitini Now, I’m all for disability pride. I like to think of myself as a bit of an advocate, not just for my son but for the rights of people with disabilities in general. I want to end the stigma. I want to change the conversation. I want to bridge the gap between them and us. But also, I want a mother flipping cocktail. 5 Ways Able-Bodied People Can...