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? The first Q&As were posted on Tuesday and Thursday of last week; three more are below.
Can you tell us about the preschool program that Nathan participates in currently? Our older children attend a parochial school, and I wonder what that moment will look like for our Kate – who has DS. Most importantly, we will enroll her in the program that best fits her needs (either early childhood through the public system or else try preschool at the parochial).. I have been told not to “let go” of this hope, and to just take it one day at a time. Thoughts?
We have been blessed with a positive situation, no doubt! When I began searching for a preschool for Nathan, I visited all (save one) of the ones that had been recommended to me by other (typical) parents. When considering my options, I “popped in” each one and took Nathan with me; I wanted to gauge the reaction to him, including the director’s body language. Ultimately, the place I selected was largely due to the specifics of what they offered (location and time), not because of their reception of Nathan, as all of my “pop in” experiences were positive. It is a church-sponsored program (Baptist) but we are not members of that church (our Catholic parish does not have a preschool program). I also started him in their summer program, which was more low-key and eased everyone into it. He attends two days per week for four hours.
The experience has exceeded my expectations. I took a cheat sheet of sign language to his summer teacher (“to help you or if you want to learn the most common signs he uses”) and she used some of the signs when I picked him up four hours later. Yep, the same day! He moved up to a different class at the start of the new school year, and his new teacher has been just as supportive. In fact, the director requested that Nathan’s early intervention therapists come to the school so they can have a better understanding of how best to help him succeed.
Nathan will transition out of Early Intervention when he turns three in March. Assuming he qualifies for public preschool, I will keep him in the same private preschool if at all possible. My only regret with preschool is that I didn’t sign him up for more days. 🙂
So…don’t let go of that hope! It has always been Mr. Andi’s and my opinion, starting with Sarah Kate and now with Nathan, that they need to learn to navigate the world as it is, and the world is full of typical people. Private preschool, populated mostly with typical kids, is a start.
How is baby Megan? And do you prefer to photograph people or places, why? What does date night look like for you and Mr. Andi?
I struggle with how much detail to share about Baby Megan – balancing privacy with soliciting prayers. Her bones are brittle, so that is now and for the foreseeable future will be a serious issue. That’s the bad news. The good news is that she has no additional complicating health problems. She is going to be undergoing a treatment at regular intervals to try to strengthen her bones, but I’m not clear on all of the details. Please continue to keep the family in your prayers. Baby Megan’s mother resigned her (well-paying) job to care for her, which was not a contingency they had planned on. They are adjusting to a new normal and can use all of the support they can get.
Now for the easy questions. 🙂
People. I struggle to give life to landscapes. Interestingly, though, back in my 35mm days before Sarah Kate was born, it was the opposite. One of my fave places to photograph? Old cemeteries.
Date nights are rare. The last date night we had (which was a sad amount of time ago) was to eat sushi and then hang out at the local Irish pub (yep, Mayberry has both a great sushi place and an authentic Irish pub). It’s much more common for us have lunch together at the local Mexican place on a weekday while the kids are at school than to go out on a weekend night. Lest you think we sacrificed date night when the kids came along, don’t. Date nights back then were eating Mexican on Friday right after work (often followed by a trip to Home Depot to acquire the items we needed for Saturday’s home project).
When I had my son 10 months ago, he was born with Down syndrome and while I didn’t know any of the health implications, the first thing that came into my head when I saw him, was, “Oh no, he is not going to be smart and he will be hard to understand when he speaks.” I want to know why I had that expectation because reading your blog and others has proven the “not smart” part very wrong. My son proves to me each day how smart he is by how hard he works and fought to live through heart surgery and feeding difficulties and how hard he works now. Every person who I’ve talked to since my son’s birth has said how enjoyable it has been to work with people and children with Ds. If people with experience in this know the truth, why is the opposite a commonly held if false belief? Who is spreading this lie about what smart looks like? I’m chagrined that I felt that way about my son at this birth and grateful that I found reality to be better than I had expected. That is what I want Down syndrome awareness month to do – to give people a good gut feeling when they think about Ds, and not a pit of fear and discomfort and pity.
Your questions may have been intended to be rhetorical, because I’m just one person and unlikely to know The Answer, but I’ll give you my opinion. I’ll take the second question first, because it’s the toughest.
There is no doubt that medical textbooks repeat the “facts” about IQ, as does virtually every website or clinical resource available. Doctors (who, I might add, are generally people who value intellect) are taught in medical school that people with Down syndrome have lower IQs – i.e., that they aren’t smart. Of course, the belief isn’t limited to doctors, but having the experts say it does lend it more credence, don’t you think?
People tell us all the time that Nathan is “smart” and I often wonder what they mean. Smart for Down syndrome? Smart compared to typical kids? Clever? Are they just being nice (I don’t believe that one). His new preschool teacher, who’s been in the business for years, says she doesn’t see any difference in him intellectually than the typical kids.
The answer to the first part is probably that the people with experience are too few and the people without it are too many. That’s why inclusion is SO important. Case in point: the story I linked to in Sun-Beams recently about the young woman crowned Homecoming Queen at her high school. The media made a big deal about it, but the students didn’t understand why it was a big deal. She was well-liked so she won – end of story. The more our kids spend time with their typical peers, the more comfortable people will be Down syndrome.
Next Up: The Lowdown on Prematurity and Specialists Galore
Now it’s your turn. What do you want to know?
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