It's almost 2pm, my husband is napping after his regularly scheduled very late night (early morning) due to that super exciting Friday Night Magic. He got home about 12 hours ago, and so far this morning he's moved more than he does on a typical Saturday and Sunday combined. Braska's asleep too, after a big morning, and I relieved her of her bouncy chair just BEFORE she fell asleep this time...even though I love the alternative option. So I thought this is my chance to sit down and actually do what I thought would be the norm for the blog...just sharing thoughts.
This morning we went to the Stay N Play Playgroup hosted by the University of Illinois Early Childhood Development Lab. Braska was chosen to participate in this group, and I was glad to have the chance for her to interact with other kids and with students who would learn from her too. I thought that there would be some other kids with developmental delays, maybe even DS, but that wasn't the case. She was the lone "non-typical" kid. Initially, I wasn't sure how this would go. The students and supervising faculty are super nice. They obviously love kids and playing with and teaching them. The group we're in is 8 children, ages 7 months to 15 months. We're at the high end of the chronological age and closer to the low end of the developmental age. But I figured at least we wouldn't be the only one to just sit and watch, playing kind of our own. I was wrong, though.
Little Kathryn, 15 months, was crawling up in her own chair, running like a champ, sharing toys, and obeying instructions. She was just adorable, adopted from an Asian country, super petite (only a pound more than Braska), and obviously very smart. Even the youngest one, 8 1/2 month old Madeline, was crawling all over the place like a pro. There was Phoena (fee-na), Reece, and Sheila all running about and happy when they had a toy they liked. Alina was 10 months and cute as a button. She sat next to us at snack and devoured her colored goldfish. Then there was Braxton, the lone boy, 15 months, and wow...I steered Braska out of his radar whenever possible. He was big, dangerous, handsy, and one seriously drooling, coughing, and snotting machine. His mom was very nice, but she had her hands full. Poor guy didn't know what to do with so many cute girls within his reach!
Times like these, which haven't been all that frequent, usually surprise me by invoking a reaction that I don't expect. I sat there for the first several minutes, watching the others run around and play and share, thinking that this was just not going to work. God bless M for going with me. I didn't even ask him to go. I didn't even hint at it in the least. I just assumed he'd stay home and Braska and I would check it out. But he went, and I was glad to see some other dads there too.
It's not that I don't know the reality of our situation. It's not that I am not aware of Braska's delays and limitations. It's not that I'm embarrassed of her delays. It's not even that I'm resentful of the "normal" kids or their parents. I think it's more that I feel the need to explain things. I want to defend her, show that she's not without merit or value. I tend to rely on her good looks, silly as that sounds. Everyone gushes over how adorable she is, everywhere we go. I've never had a negative comment about her at all in public, which I know happens to alot of parents in my shoes. The glasses are a big draw, everyone cooing and asking about them. She gets compliments on her hair and her snazzy outfits, and I am proud that she gets positive reactions. I'm admittedly big on appearances, so I'm pleased that people find my kid cute and not repulsive. That's natural and acceptable, right? I know it's an issue for me to work on, my shallow nature regarding the outside. But in these situations, that's my comfortable place. That's where I know we can move the conversation to and relax.
Today we participated, she played, we sang along with "The Hello Song" and it's close relative, "The Goodbye Song." I think it's good for Braska to have this kind of exposure, since she spends 96% percent of her time with just us, and the remainder is spent with a very small circle of friends who we don't see that often. The students and supervisor were great, especially Mary-Kelsey, our assigned student for the semester. They asked about what things they could incorporate for Braska, what types of toys or items that she would best respond to or that would assist in meeting her developmental goals in EI. It's very nice of them to take these things into consideration. I have to think they thought that she would be an interesting subject for the class and this part of the semester requirements for the students, or we wouldn't have been chosen for the group. They had all her background and info from the beginning. Mary-Kelsey is a speech pathology student, and I say it never hurts to have more exposure to speech/language and feeding help.
Introductions were done of the kids, but not with ages or any other info. So we gleaned ages just from hearing people ask and answer while the kids were playing. This is where I felt a bit lost. I didn't get to explain why she didn't crawl to get toys. I didn't get to explain why she was the only one at the table who shuffled her snack but didn't put it anywhere near her mouth, why her sippy cup was the only one not touched. I didn't even get to use the words Down syndrome. Is that good? Should I be glad it wasn't an issue? Or did they all just know and ignore it? Did they just think "something's different about that kid" and leave it at that? I don't know. I wonder if they were trying to be all about the inclusion thing and didn't want to make us feel different or like a stand-out.
I don't know. I guess I'm still processing. As I sit here, I'm not upset at all. I'm not hurt or disappointed or anything. Please don't think that or read that into the picture. I'm just thinking through the morning. I wonder why I reacted like I did. I mean, I know why I kept her from Braxton's reach.
Above all, I'm proud of her for not flipping out in a situation that was very overwhelming. The noise and the people and the unfamiliar place. These are things that often are too much for her individually, but together, I was sure it would bring a withdrawal, at least. But she didn't seem to mind. She watched at first, kind of let it all sink in and process, then she played. Mostly she played with the things we gave her, she's easy like that. But there were a couple things that she's used with her therapists, so she particularly liked those. She babbled a little, and she didn't mind at all sitting in a little kid chair at the table for about 10 minutes playing with colored goldfish and banging on the table. I'm anxious to see how it goes as we move forward. This lasts til the end of March or early April, I think. Every Saturday morning, we'll go and play. I bet by the end things will be very different, so that will be fun to see. And most of all, I'll probably learn alot and work through my own internal things. It's about time, I'd say.
Way to go, Braska Bear. Thanks for going, M.
This morning we went to the Stay N Play Playgroup hosted by the University of Illinois Early Childhood Development Lab. Braska was chosen to participate in this group, and I was glad to have the chance for her to interact with other kids and with students who would learn from her too. I thought that there would be some other kids with developmental delays, maybe even DS, but that wasn't the case. She was the lone "non-typical" kid. Initially, I wasn't sure how this would go. The students and supervising faculty are super nice. They obviously love kids and playing with and teaching them. The group we're in is 8 children, ages 7 months to 15 months. We're at the high end of the chronological age and closer to the low end of the developmental age. But I figured at least we wouldn't be the only one to just sit and watch, playing kind of our own. I was wrong, though.
Little Kathryn, 15 months, was crawling up in her own chair, running like a champ, sharing toys, and obeying instructions. She was just adorable, adopted from an Asian country, super petite (only a pound more than Braska), and obviously very smart. Even the youngest one, 8 1/2 month old Madeline, was crawling all over the place like a pro. There was Phoena (fee-na), Reece, and Sheila all running about and happy when they had a toy they liked. Alina was 10 months and cute as a button. She sat next to us at snack and devoured her colored goldfish. Then there was Braxton, the lone boy, 15 months, and wow...I steered Braska out of his radar whenever possible. He was big, dangerous, handsy, and one seriously drooling, coughing, and snotting machine. His mom was very nice, but she had her hands full. Poor guy didn't know what to do with so many cute girls within his reach!
Times like these, which haven't been all that frequent, usually surprise me by invoking a reaction that I don't expect. I sat there for the first several minutes, watching the others run around and play and share, thinking that this was just not going to work. God bless M for going with me. I didn't even ask him to go. I didn't even hint at it in the least. I just assumed he'd stay home and Braska and I would check it out. But he went, and I was glad to see some other dads there too.
It's not that I don't know the reality of our situation. It's not that I am not aware of Braska's delays and limitations. It's not that I'm embarrassed of her delays. It's not even that I'm resentful of the "normal" kids or their parents. I think it's more that I feel the need to explain things. I want to defend her, show that she's not without merit or value. I tend to rely on her good looks, silly as that sounds. Everyone gushes over how adorable she is, everywhere we go. I've never had a negative comment about her at all in public, which I know happens to alot of parents in my shoes. The glasses are a big draw, everyone cooing and asking about them. She gets compliments on her hair and her snazzy outfits, and I am proud that she gets positive reactions. I'm admittedly big on appearances, so I'm pleased that people find my kid cute and not repulsive. That's natural and acceptable, right? I know it's an issue for me to work on, my shallow nature regarding the outside. But in these situations, that's my comfortable place. That's where I know we can move the conversation to and relax.
Today we participated, she played, we sang along with "The Hello Song" and it's close relative, "The Goodbye Song." I think it's good for Braska to have this kind of exposure, since she spends 96% percent of her time with just us, and the remainder is spent with a very small circle of friends who we don't see that often. The students and supervisor were great, especially Mary-Kelsey, our assigned student for the semester. They asked about what things they could incorporate for Braska, what types of toys or items that she would best respond to or that would assist in meeting her developmental goals in EI. It's very nice of them to take these things into consideration. I have to think they thought that she would be an interesting subject for the class and this part of the semester requirements for the students, or we wouldn't have been chosen for the group. They had all her background and info from the beginning. Mary-Kelsey is a speech pathology student, and I say it never hurts to have more exposure to speech/language and feeding help.
Introductions were done of the kids, but not with ages or any other info. So we gleaned ages just from hearing people ask and answer while the kids were playing. This is where I felt a bit lost. I didn't get to explain why she didn't crawl to get toys. I didn't get to explain why she was the only one at the table who shuffled her snack but didn't put it anywhere near her mouth, why her sippy cup was the only one not touched. I didn't even get to use the words Down syndrome. Is that good? Should I be glad it wasn't an issue? Or did they all just know and ignore it? Did they just think "something's different about that kid" and leave it at that? I don't know. I wonder if they were trying to be all about the inclusion thing and didn't want to make us feel different or like a stand-out.
I don't know. I guess I'm still processing. As I sit here, I'm not upset at all. I'm not hurt or disappointed or anything. Please don't think that or read that into the picture. I'm just thinking through the morning. I wonder why I reacted like I did. I mean, I know why I kept her from Braxton's reach.
Above all, I'm proud of her for not flipping out in a situation that was very overwhelming. The noise and the people and the unfamiliar place. These are things that often are too much for her individually, but together, I was sure it would bring a withdrawal, at least. But she didn't seem to mind. She watched at first, kind of let it all sink in and process, then she played. Mostly she played with the things we gave her, she's easy like that. But there were a couple things that she's used with her therapists, so she particularly liked those. She babbled a little, and she didn't mind at all sitting in a little kid chair at the table for about 10 minutes playing with colored goldfish and banging on the table. I'm anxious to see how it goes as we move forward. This lasts til the end of March or early April, I think. Every Saturday morning, we'll go and play. I bet by the end things will be very different, so that will be fun to see. And most of all, I'll probably learn alot and work through my own internal things. It's about time, I'd say.
Way to go, Braska Bear. Thanks for going, M.
Hey, just wanted to let you know that you are a normal typical mom! Play dates bring out the very same feeling and internal concerns that you expressed in every parent out there - I think its because at a certain level, we ALL do not know what we are doing and are concerned that someone might find out :-)
ReplyDeleteReally though, I think it will be a great experience for all of you, young kiddos learn a lot of their stuff through social interaction, so I bet you will see quite a change by the end of your session. And God works so many changes in us through the challenges we face in parenting. Have fun with it and keep us posted on how things go.
Sounds like it will be a good exercise for all 3 of you. Hope Braska avoids the germs and enjoys the people and the activities. We look forward to your comments after future sessions.
ReplyDeleteI think your reaction was totally normal. I would have felt the same way. And I DO compare, even though I know I shouldn't.
ReplyDeleteI always feel the need to explain things too. Like about the heart surgery, and the DS, and the early birth, and all the factors that go into that. Why my kid isn't walking independently yet even though he's 19 months old. Why, even though he's very vocal, he doesn't have many understandable words.
And I totally get the appearances thing. I really have noticed myself making extra effort to have Evan in a cute outfit, clean and looking good. It's like I'm trying to make up for something else; trying to let people know that he's worth that effort, you know?
We've all got our hangups. Such is life. Sounds to me like you and Braska handled it all pretty well.
Well it's all going to be a learning experience, isn't it? Sounds like a good opportunity for Braska to get out and about and who knows you might learn (and teach) something.
ReplyDeleteWay to go! :)
(And I get the lookin' good thing too.)
It's funny that you wrote this because I just had one of these moments this week that I will post on Tuesday for my weekly Ds Awareness post.
ReplyDeleteNo response is wrong. We all process this stuff differently and whatever that is is normal. As for appearance, I'm a little embarrassed to admit that when I first learned Peanut had Ds my first concern would be that she would have those features that at that time I did not see as flattering. Our local Ds Guild brought us the Band of Angels book in the hospital and I scoured the book looking for children that didn't have the tell tale signs of Ds. Even a couple years ago when the Guild asked for a picture to use in the newsletter, I chose one of Peanut that didn't look so much like she had Ds. But, I will say that now when I look at a person or child with Ds I see the beauty. They truly are beautiful! I love to look at their pictures. We are human, afterall.
To everyone--As I read back over the post, I realized that it sounds like I'm more upset than I was....that's what I get for writing and publishing the post before I let it settle a bit. Ha!
ReplyDeleteJessie--Thanks for the reminder that it's not like I'm the first parent ever! ;o) I agree that in my mind I'm always looking over my shoulder, thinking someone's going to figure out I shouldn't be allowed to raise a kid.
Dad--I also hope she avoids the germs. That was very hard for me today to let her touch all those toys that had been played with by other kids before I wiped them down. M keeps saying she has to get sick sometime...
Jen--Thanks so much for your thoughts. I'm glad I'm not the only one with the urge to explain.
Tricia--As I thought about it tonight, and during Braska's goodnight prayers, I prayed that this will be a tool used to educate a few who can educate a few and so on... we're there for a reason, we'll learn and we'll do our best to be open so we can also teach.
Deb--I'll check out your post. And I had to smile wryly at your comment about picking pictures that don't look so clearly DS. I did this SO much back at the beginning. I wanted to get her head up a certain way, her eyes wide open, and no tongue hanging out. But the whole time she had an NG tube...what was I thinking?!? Oh well, I just have to get over it. I'll always think she's beautiful regardless of all that. I have to remind myself that I'm far from eye candy so she has a strike against her that has nothing to do with T21. :o)
You know, all those feelings are NORMAL!! I still have those feelings when I see a child the same age as Kallie doing things that she isn't even close to doing. Yes these days it's more academic, so it's less noticable unless you are having a conversation with her or quizzing her on something, but I still LOVE my daughter beyond measure. I wouldn't trade being Kallie's mom in the whole world. Big hugs girlfriend...It's not an easy road but just know, your not in it alone!
ReplyDeleteIt's a little bit of deja-vu for me, to be going through things like this with Ruby, because I went through that with Karly. And it's so different - Karly wasn't 'officially' diagnosed with autism until 3rd grade. That's a lifetime! I always struggled with do I just let her be herself, or do I try to explain? And there's never been a set answer to that question.
ReplyDeleteSounds like the new playgroup will be a wonderful experience for Braska - and that's what matters most.
And I didn't think you sounded upset - I thought you sounded like a concerned parent :)
Christina--Thanks...but arrrgghhh! The academic issues ahead scare me!
ReplyDeleteMichelle---I bet it's interesting to see how things have changed...and how they haven't. Both your girls are SUPER!
I still have moments like this. I don't know about you but I always feel guilty after somehow like I have turned my back on Tristan momentarily. When Tristan was smaller I told anyone that would listen that Tristan had DS. I think in my mind I just wanted everyone to know so we wouldn't have to explain and I could put more focus on showing them how fabulous and more the same as other children he was than differant. Tristan has 3 cousins all born within 5 months of him. It has been tough with the comparing but the more time he spends with typically developing children the better he does. He models off other ppl his size. This sounds like a wonderful opportunity for Braska and you. It gives you practise with how you want to handle situations where Braska having DS is concerned. it also offers all those other parents and children some insight on how wonderful Braska is and will help pave the road for acceptance. I can't wait to read more about this and see how it all unfolds. :)
ReplyDeleteIt sounds like a neat thing the university is doing with this playgroup, but like you, I wouldn't have expected my child to be the only one there with any delays. If it's sponsored by the Early Childhood Development Lab you would think they would want a mix of kids with and w/out delays.
ReplyDeleteIt does sound like it could be a good thing though, exposing Braska to a bunch of other kids...the social aspect and all of that. Hope it works out!
I'm quite sure after looking at the pictures on Braska's blog that the playgroup uses the classroom I work in. This is the most I've ever heard about the playgroup. I hope it turns out to be a valuable experience for you to take part in.
ReplyDeleteKari-- It will be good to see how she handles the whole thing and how I handle her handling it. :o)
ReplyDeleteMichelle--I agree and would have thought they'd work for some "developmental diversity" you might say, but then again, there are different ages in there, several different ethnic representations, so maybe that was more their goal.
Marci U--Hey!! Cool that it's your room...what a neat coincidence. I hope it goes well, and I'm thinking now that it will.