This October I’m opening up the floor to reader questions as part of my contribution to Down Syndrome Awareness Month. As long as you keep it clean, nothing is off limits – Down syndrome, cerebral palsy, birth stories, parenting, photography. What do you want to know? Find the first five Q&A posts here; three more questions with answers are below.
Do you know whether Nathan will need heart surgery in the future? I can’t remember if you’ve ever mentioned if he has a heart condition?
Approximately half of all children born with Down syndrome have some sort of heart defect or other congenital heart disease. There are no guarantees, of course, but for now we have dodged that bullet. Nathan’s heart was evaluated by a cardiologist before he left the hospital when he was born and found to be in perfect working order.
I feel for all of the parents that do have to face that giant. Sending Sarah Kate “under the knife” a week after her third birthday was bad enough – I can’t imagine what it would be like with a baby.
My son has Global Developmental Delay for unknown reasons. Do you know if anyone with GDD has ever become “typical”, or “caught up”? Or is it inevitable that there will be some learning difficulties as an adult…nobody seems to be able or willing to give any answers!
I’m no expert on GDD, so aside from consulting Dr. Google, which I’m sure you’ve already done, there isn’t much I can tell you. I will tell you, though, that I’ve encountered the same thing with doctors and therapists time and again. When Sarah Kate was younger, it frustrated me to try to get answers about what she would or wouldn’t be able to do, and I often felt like they were withholding information from me intentionally. In fact, no one ever actually told us, “Your daughter has cerebral palsy” at all – we heard “hypertonia” and “high tone” over and over again and again until finally one day in the orthopedist’s office I used the term “cerebral palsy” myself. Unbelievable, right?
Looking back now, I still don’t know if they were unable or if they were unwilling, but I suspect a little of both but mostly the former. Even for cerebral palsy, which is a more precise diagnosis than GDD, the way it manifests from patient to patient varies so widely that it’s just not possible to be assured of much of anything. In hindsight, though, I’m glad that no one told me exactly what to expect. Medical professionals, just like everyone else, bring their own personal biases to the table, and I’d hate to think that one person’s pessimistic viewpoint affected my expectations of my child in a negative way.
I also recognize now that by pressing to get an answer about the future I was trying to control a situation that felt out of control to me. I’m very much of a “control freak,” though I’m getting better – mostly because of Nathan, I think. I doubt that if I could go back and do it again that I’d be able to handle it much better, though. It’s tough to be so unsettled when it comes to your child.
I would like to know how you started your blog and how did you know how to set it up?
If you’re reading this right now, you can start a blog. Seven years ago, I created a blog using Blogger.com (FREE!) to keep family and friends updated on Sarah Kate’s progress with SDR. Although I stopped posting to it years ago, it still exists; I chose to leave it up as a potential SDR resource for other parents. I also created a blog in 2008-ish at MarathonAndi.com (no longer available) using my Mac, which was geared toward running. I liked the idea of blogging but I struggled to find things to write about. In 2010, when Nathan was born, I found my muse and started Double Dose of Special, again using Blogger.
Although Double Dose of Special is still live, I moved all of the content over to this blog in the spring of 2011 because I wanted the flexibility and control of self-hosting using WordPress and a new name that would be more active and less passive. But the simplest answer to your question is that I just decided I was going to do it and I did it. I’m a geek so anything I didn’t know I Googled. I made plenty of mistakes, but overall I’m pretty happy with my little corner of the interwebs.
If you’re interested in starting a blog, here are a few resources to get you started:
From Life Your Way by Mandi Ehman: Blogging Basics for Beginners and Choosing a Blogging Platform Starting Your First Blog? 29 Tips, Tutorials and Resources for New Bloggers by Problogger’s Darren Rowse MomComm.com by Melissa Culbertson Blogging with Amy by Amy Lynn AndrewsIf you have more specific questions or want a little more information about what I use (or what I recommend to start), leave a comment below or shoot me an email and I’ll be happy to go into more detail. If I were to do it over, I wouldn’t start with Blogger, FYI. If I weren’t going to self-host I’d use WordPress.com. It’s also free and it’s much easier to transition to self-hosted WordPress if you’ve already been using WordPress.com.
Next Up: Opening Up About Disability, Anxiety, and Tackling the R-Word
Now it’s your turn. What do you want to know?
You can leave a comment, send an email or use my contact form, or go completely anonymous by dropping your question in the form below.
Andi, I have to agree with you 100% on your reply to the person who asked the question about GDD. When my youngest was diagnosed with autism, the doctor told us at that appointment all of the things she would “never” be able to do. She was only 3 and a half – and already he had written off her future. She has since gone on in the last 7 years to achieve all of those things he said she couldn’t. But the damage to this mama’s heart has been much harder to overcome. It’s challenging to be positive and open-minded about your child’s future when in the back of your mind you are hearing the words of the ‘professional’. The best piece of advice I can add to that person is to remember that your child is on their own developmental timeline – really ALL children/people are! There are ‘norms’ but there are also the outliers who average out to make those norms. Embrace your child’s timeline and embrace the person your child is! 🙂