The birthing room was jammed packed when Parker made his grand entrance.
Having a 4% chance of giving birth to a child with an extra chromosome automatically invites lots more people to your party.
After being handed off to the neonatal team, the first thing I was told was, “Well, he doesn’t have a Simian Crease.”
Most kids with Down syndrome have either one or both palms blessed with Simian Creases.
Parker didn’t have the creases.
After everyone one had left, my OB asked me what I thought. Did I think that Parker had Down syndrome?
“Yes,” I replied. It’s all in the eyes, but he does indeed have Ds.
I talked with a few new parents of kids with Ds don’t want people to be able to look at their baby and see the Down syndrome. I had a LOT of nurses at PCMC tell me that Parker didn’t really look as though he had Ds, so maybe he didn’t get it too badly.
ahem.
I believe most parents quickly get over being able to ‘see’ the extra chromosome as their child grows and they realize that a child with Down syndrome truly looks more like his siblings that not. And quite frankly there is a beauty found in the faces of Down syndrome. But I may be biased there.
Curly, Larry and Mo. In no particular order. heh.
At least that has been the case with Parker and his brothers. They each were cut using the exact same cookie cutter.
But many a diagnosis doesn’t come with the ability to recognize it visually. Think Aspergers or Anxiety disorders.
What about then? Do you disclose that diagnosis to your school if your child is managing well?
What about your neighbors and neighborhood? Do you disclose a special need that isn’t visually recognizable then?
What are your thoughts and experiences?
Sometimes you really need to. I don’t say too much to Evan’s Primary teachers but they do need to know to allow him extra time for answers and so on. He also wears a hand brace so there is a bit of a visual clue that something is different even though it is not always readily apparent, most people just assume he has a cast or something. I think it is important to share some information when it is pertinent to the situation especially if it will make things a bit smoother for your kid.
Twitter: bateminx
says:
First of all, Parker looks *just* like his brothers!!
While Sammi’s diagnosis is obvious by looking at her, I felt the need to tell people (anyone and everyone!) about it during her first year, probably because I just needed to talk about it. After that, I stopped even mentioning it. I figured it didn’t matter. We sometimes mentioned it when we were looking for a private preschool for her last year, and then stopped mentioning it and brought up the words “special needs” and “IEP” to them during the tours of the facilities, just to see their reactions. The one that didn’t blink got our business, and we and Samantha have loved it there. I don’t tell neighbors – I figure they’ll see it anyway, but they’ll also get to know Samantha herself, with the parents who treat her like any other kid (mostly), and eventually it may or may not come up in general conversation. But she’s always been welcomed with open arms. If anyone ever chooses *not* to give her a chance or play with her or whatever, then they aren’t worth knowing anyway.
Twitter: trishdoerrler
says:
I can relate to the birth room confusion, as my son was born with severe hypospadias and the delivery team wouldn’t speculate as to the sex of the baby because of it – quite the stress until the urologist could examine him the following day!
Regarding autism, he has been in services since the age of 2, so I have always disclosed. I also disclose to anyone who will be in charge of him, such as the swimming instructor, church nursery workers, etc. I think it’s only fair to them to not be aware of the situation.
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Thank you for giving me the name of that crease. When my husband and I were dating he was trying to tell me how in the Philippines the singular crease is considered good luck. Before he could finish his story I told him what it is accosted with but I have heard it is really common in people with out Sd. Also did I mention to you that my niece has Cri du Chat? I had no idea this was something found with her disorder. I will have to take a look at her palms. Does it mean anything? How come the nurses were looking for it? It is pretty cool to think that in another culture it is considered good luck huh?
As for telling the school, I would say absolutely. I have a learning disability call Auditory Processing Disorder, and because all of my teachers understood what it meant, how it affected me, and how I perceived information it helped them understand how to teach me, and what they as teachers were up against. As for peers and neighbors, I would say whatever you feel most comfortable with. To me I have found it empowering to share with people. As a kid some children can make fun and try to find your weakness to bring you down. It never bothered me, I never cared and I learned that once people noticed I didn’t care they understood and were excepting. For whatever reason people have an issue when someone has a weakness or insecurity. I don’t understand it… so that is why I am open about it. I don’t care, I never did and with that I received great results. Plus it creates opportunities to relate to someone else on a whole different level, and can create some wonderful friendships.
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I forgot to mention how cute I think Parker is!!! He has one of the best smiles!!! And he really does look like his brothers. It is so cute!
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Twitter: therextras
says:
Asking a lot of personal questions there, Friend.
Since I don’t blog primarily about myself, seems a mute point.
Just about everyone I read online discloses their diagnoses.
Your boys are extraordinarily handsome!
Barbara recently posted..Off Balance
Ahren looks normal and unless you spend time with him you would never see the issues. I only disclose to people that it is important to tell. Teachers, caregivers, etc. Even then, I get a lot of ‘but he looks perfectly fine’ and ‘are you sure there is something wrong’. I sometimes get the feeling that they think I am inventing his issues for attention. Seriously, they look at me like I am crazy. If I don’t tell them then they begin to think he is lazy because he cannot physically do what others his age do and they try and push him. I would rather they think I am crazy and not make him feel like a failure.
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I just signed my dd up for swimming lessons & did not mention it. She is a fish & much more comfortable in the water than her sisters were at this age (she turned 4 last week). I’m sure they’ll realize it soon enough, but I just didn’t think it was important. If it was significant to the activity, I would mention it though.
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