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Heartbreak and Lessons Learned

I toured a school for Rowenna this morning, and while I think we’ve found a good fit for next year, the failure of the current school year came careening around the corner and knocked me down. The district has been flat out wrong about a lot of things in the last few weeks. There is […]

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To Be Continued

Disclaimer: Though we are choosing to advocate against a self-contained placement for Rowenna at this time, this is not a judgment on anyone who has chosen that for their child. We simply do not feel it is an appropriate placement for our daughter at this time based both on our observations at home and the […]

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Love By Different Names

While I was pregnant with Afton, who we knew then would be our last child,  I re-read The Poisonwood Bible. There was a quote that leaped off the page and grabbed me with its truth, one that hadn’t struck me as significant in previous readings: A first child is your own best foot forward, and […]

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Privilege

We haven’t had Rowenna’s IEP meeting yet, but I want to pause here to talk about privilege for a minute. (And for those following at home… I do think things will end well after the meeting next week.) In the last week, I have become acutely aware of the amount of privilege I have when […]

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Pop

Hear that? It’s the sound of my balloon bursting. Until now, we have had an amicable relationship with our school district. We felt very in sync with their suggestions for Rowenna, and we loved her placements for the last two years. We know many children who have various diagnoses, and many of them did an […]

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Autism, Rowenna Style

As Autism Awareness Month draws to a close, I thought I would post about why we pursued further testing and what autism looks like for Rowenna. Disclaimer: we are still learning about autism and Down syndrome. For resources, please check out The Down Syndrome-Autism Connection and this fantastic book about the dual diagnosis. For a […]

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“I Want Ball” – A WDSD Reflection

March 21 is World Down Syndrome Day. Some celebrated by wearing “wacky” socks as a conversation starter. Some performed random acts of kindness, leaving behind little calling cards describing the purpose of WDSD. Others participated in the Day in the Life campaign, an ongoing project collecting stories about life with Down syndrome, preferably in the […]

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Welcome

We’ve been doing a lot of treading water in my family these days. Rowenna’s therapy has been incredibly transformative (more in future posts) but exceptionally time-consuming. Afton has been on her own diagnostic journey, which has left us with a lot of bills and not much in the way of answers, and has a sleep […]

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Windows

Truth be told, one of the hardest things about the last year has been watching Rowenna slowly slip away. Where she used to want hugs, seek comfort, imitate signs and sounds, we watched her retreat into her mind and didn’t know how to help her. A month into therapy and two months into the school […]

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Open Letter to NDSC

On October 16, you sent an email to your membership asking “Are We ‘Aware’ Enough Already?” and provided a somewhat flip answer to the question. I’m not sure if your email was in response to some of the excellent blog posts written about the need to move beyond awareness (at least one of which has […]

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