This October I decided to open up the floor to reader questions as part of my contribution to Down Syndrome Awareness Month. As long as you kept it clean (and you did!), nothing was off limits – Down syndrome, cerebral palsy, birth stories, parenting, photography. Find the earlier Q&A posts here; the final two questions with answers are below.
I am the mom of a sweet five month old baby girl with Down Syndrome (she is our first child). My friend referred me to your website when I told her about my sister, who has a 2 year old with spastic diplegia CP, and she is expecting her (unplanned!) second child around Christmas: a girl with Down Syndrome. She is understandably overwhelmed but working through it. I can understand what she is going through in some ways, and not at all in others. I just wondered from your perspective as someone who is living a similar situation, what is the best way for me to support her?
Will you think I’m a freak if I say that when I read this question I did a little happy dance? Okay, so maybe that’s an exaggeration, but I did get a little excited thinking there will be another family like ours out there. I only know of one other family who has “one of each” like we do, and that’s the Stumbo family, though in their case, both children weren’t surprises – their daughter with cerebral palsy was adopted after their daughter with Down syndrome was born.
First, I’d say that she’s already a leg up on a lot of folks – she should have more confidence than most that she can handle what comes, because she’s already done it with the first child. The two conditions are very different, but much of what comes in the early years will be familiar to her, like navigating early intervention, for instance. She’ll already be accustomed to having a child that’s differently-abled, and she will have already figured out who her “real” friends are. She will also have the benefit of having a family member with Down syndrome already, which I believe will make a huge difference in her outlook and expectations. All of those things will mean she’s better prepared than a mother entering the special needs world for the first time.
When I first read your question, my initial thought was that it might be more difficult to have two kids with disabilities so close together (two years apart instead of seven like my children), but the more I thought about it the more I think it might actually be better in many respects. If my two had been born closer together, Nathan would likely have been able to help Sarah Kate with gross motor skills, while she would have helped him with speech, because they would have been peers who played together more easily. As much as Sarah Kate loves Nathan and enjoys spending time with him, it’s more like a caretaker relationship than a peer relationship.
She won’t know, of course, until her daughter is born what (if any) health problems she will have. If she dodges the heart and GI bullets, then the first couple of years will be pretty much like having a typical child, and by that time her two year old will be four and things will likely start to settle out a bit compared to where they are now. The first four years of Sarah Kate’s life were the toughest for me – her peers developed so rapidly and she was so painfully behind. Around age four to five, they began to plateau which enabled her to start to catch up (somewhat) and me to start breathing again. The reverse will be true for Down syndrome – the early years will likely be the easiest.
But the one thing I would tell her if she were standing in front of me right now is, “You got this.” 🙂
After navigating the educational/IEP waters in my school district for many years seeking inclusion for my daughter w/Down syndrome, I was curious about the openness of your “Mayberry USA” schools to that idea? Of course, Sarah Kate has other accommodations, but perhaps you are attuned to what is occurring in your district w/respect to those students with Down syndrome? As we all know that inclusion is founded in law, we also are aware that many districts do not willingly go this route.
As for our experience with the school system thus far, we’ve had excellent experiences with IEPs, and 504 plans for Sarah Kate (she no longer has an IEP because her only need at this time is for accommodations), and we are on year five of wonderful teachers who welcomed her into their classes. Sarah Kate’s experiences give me hope for the future.
But of course Nathan is not Sarah Kate. His needs will be different, and people will have different expectations for him, whether they mean to or not. He will, to some extent, be typecast from the beginning. I will be honest and tell you that Nathan’s future education is what keeps me up at night. I’m not fully aware of what the norm is in our area, mostly due to willful blindness on my part, as I know some families I could ask but have opted not to do so. I prefer to tackle what lies directly in my path today, rather than stress over what may happen in a few years. I’m also hopeful that whatever the situation is today that it’ll improve by the time we have to face it (a rough economy magnifies the problems in the schools).
We do live in an area of the country that is socially conservative and heavily Catholic, so it is my belief (and I’m speculating here) that we probably have a lower abortion rate in our immediate area of children with Down syndrome. I have heard tell that in some areas of the country it’s rare to see a child with Down syndrome, but we know several in our small town. All of the ones that we know attend school, so I would hope that familiarity with the condition would prove to be beneficial, but I’m not 100% certain of the extent to which they are included with their peers. I suspect that they are, but not as much as I would want them to be.
Thank you so much to everyone for all your questions this month!
I believe I answered everything that was asked, but if I missed your question, shoot me an email and I’ll answer it in a future post. And of course, my email inbox is always open (andi at bringing the sunshine dot come) if you have a question in the future. I’ll be back on Thursday with details on why I missed last Friday’s Seven Snippets.
