First things first: earlier this month, Rowenna received an official autism diagnosis. We knew it was probably going to happen, but having a folder full of information thrust into our hands and then a month of calling therapy providers and chatting with various insurance reps made it a bit more concrete. This has been a […]
Tag Archives | Down syndrome
Blog Challenge Week 7: Golden Moments
It’s a Sunday morning. Sunshine streams in through the windows, the ceiling fan circles lazily above us. Both my girls are morning people. I assure you they did not inherit this trait from me, but even so I try to soak up these moments even if I’m not quite ready for the day. Rowenna comes […]
Blog Challenge Week 6: Vent
A vent. A vent I’ve been meaning to write for years, but haven’t had the right words until now. Down syndrome community: our kids are ok because they are our fellow human beings. Period. Full stop. No further justification required. I used to help moderate the Down syndrome board over on Baby Center and used […]
Blog Challenge Week 5: Comforts and Connections
Today Rowenna officially received an autism diagnosis. After watching our girl change over the last year, and a series of evaluations, there was nothing but relief. With that one word on paper now we have access to a wealth of supports to help her better navigate the world. As we’ve been going along the last […]
Blog Challenge Week 4: Getting Raw, Getting Real
This week’s prompt is to get real about challenges related to disability. The host of this blog hop ran the list of topics by me a few weeks before they went live. This one jumped right out at me because I wondered what I would write this week. Things have been a little too real […]
Still Rowenna
Today we had some evaluations done as part of our journey to figure out what’s going on with Rowenna. There’s been a slow build up of indicators that something might be going on in addition to Down syndrome. Over the past year, we have seen some majors changes in our girl. For a while we […]
Book Review: Up Syndrome
There are a lot of books out there about parenting a child with Down syndrome, and the vast majority of those focus on the first years of life. (And most follow a very familiar arc: surprise, grief, the a-ha moment, and then a bit about the beauty of a child with Ds.) It’s great to […]
Blog Challenge Week 2: Coming to Terms with Disability
This is a hard week for me because it involves admitting some stuff I am not very proud of. Coming to terms with disability has been a multi-step process for me and as I write today I am painfully aware that I’m probably not done. You could say I came “to terms” with Rowenna’s disability […]
Blog Challenge Week 1: My Connection to Disability
This summer I’m taking a Blog Challenge – an amazing opportunity to read more from those in the disability community and to get me back in the habit of writing more frequently. Read more from other bloggers participating in the hop – links at the bottom of this post. I’m excited about this opportunity. The […]
Sad and Disappointed
This has been a sad few weeks in the online Down syndrome community. Several young children have died, some unexpectedly and some after fighting long-term illness. To watch our community gather on message boards, facebook, and through email to support families and mourn these losses is a sight to behold. We are fiercely protective of […]
