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 earlier Q&A posts here; three more questions with answers are below.
When did you find out that Nathan had Mosaic Down Syndrome? I know there are different types of Down Syndrome, but with Mosaic do they know which cells are affect by the extra chromosome? Also,I have a really hard time when people say to me “Well she is so high functioning and she will be just fine. She doesn’t have Downs that bad.” It’s something that burns my rear, how do you handle comments like that,especially when they come from family?
We found out as soon as the full bloodwork came back when Nathan was about a week old. The pediatrician may have suspected it from the beginning, because she mentioned it as a possibility before he left the hospital, and the ob/gyn told us he looked for visual signs when he delivered him and didn’t see any immediately – only once he was being cleaned up. From my understanding, any type of cell can be affected, just not all of them are. Testing involves using white blood cells, but the percentage of affected blood cells may not be the same as the percentage of skin cells, etc. We have never requested a copy of Nathan’s karyotyping report so we don’t know what his percentage of affected blood cells are.
I struggle with the positive comments that you mentioned. In some ways I believe it; in other ways I try not to. The truth is that Nathan WILL be just fine, but the definition of “fine” varies from person to person. I try to remind people that the developmental gap between kids with Down syndrome and their typical peers widens the older they get, so while we will continue to press him to do as much as he is capable of doing, we are prepared for the day when he’ll begin to fall behind. I think sometimes people say things like that because they are trying to reassure you that things are going to be okay, so it’s possible they are taking cues from you – maybe they think you need reassurance. Or, more likely…they may need it themselves.
How often a week/month did Nathan have birth to three sessions? I see different blogs or posts, and I can see that there is a BIG range in what is offered by different states, private insurance, etc.. I just keep telling myself that the biggest influence is the consistency of what we offer when the therapists aren’t visiting our house…but sometimes its hard to not wonder if more would be better.
Not nearly enough! Nathan has had, on average, one visit each from OT, PT, and Speech per month since the beginning. He received more frequent speech visits earlier this year when he seemed to be on the verge of a breakthrough, but his PT was cut completely in June because he was no longer testing as delayed. If he weren’t six months away from transitioning out of early intervention, there would probably be talk of cutting his OT at this point, as well. For comparison, Sarah Kate received weekly PT the entire time she was in early intervention (same state but different region).
We have private insurance, which provides up to 30 therapy visits per year in PT, OT, and Speech (combined, not 30 for each), after copays and deductibles. We have so far not opted for private therapy in any of these three disciplines, though we have considered it for speech. I expect that at some point we will acquire private speech therapy for Nathan, but I’m not yet sure of when – we struggle with that decision almost daily. Every time we are very close to doing it, he has a big breakthrough and we decide we can wait a little longer. Many times, he seems capable of doing things, but just doesn’t seem willing, and I’m not sure that a private therapist would be able to do much about motivation.
I agree that what you do on a daily basis makes the biggest difference. If it were possible to have intensive therapy daily in perpetuity, the progress would probably come quicker, but the reality is that you can’t live a life comprised of nothing but therapy (even if you can afford it). Not everyone agrees with me on that point, however, so remember that Your Mileage May Vary. 🙂
I love so many of your pictures. My son is almost 3 and has cerebral palsy, and I have been working at trying to photograph him to capture little moments in our lives. What’s your advice on day to day photography of kids with special needs?
First – thank you! As for your question, commit to a 365 project! It doesn’t have to be “take” one photo every day – it could be post a photo to a blog or Flickr account every day, which is what I do. I’ve been posting a photo to my blog (and to Flickr) every day since January 1, 2011, and it’s made a huge difference in not only the quantity of photos but also the quality. Some days it’s tough to make a new photo happen – I rely on my iPhone and instagram on those days – but the longer I go without missing a day the less I’m willing to “slip” and miss one. Not all of my photos are of my kids, but most are. Using a blog and/or Flickr are what will keep you accountable, especially if you share it with friends and family. Another accountability option is to join the online community, Capture Your 365.
Beyond that, you need to keep a camera with you at all times and be ready to shoot at any moment. I’ve missed a lot of great moments even though I do keep a camera handy all the time. Don’t feel, either, that your son needs to be looking at the camera – some of my favorites were photos that don’t show my children’s faces at all. The trick is to get into the habit, and once you do you’ll keep it up.
Last chance to Ask Me Anything! 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.
