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One More, More than One Community:Down Syndrome | |
Whoops! Posted On: Aug 24 2010 | 9:08 pm Guess who forgot picture day at preschool? Well, that would be ME! I am no longer in the running for Mother of the Year. Obviously. She looked so cute today though, so maybe they'll throw us a bone and provide the option to buy later (even though it looked like it was all pre-pay orders). I'll be ok. I mean, we did get our I'm Down with You book in the mail yesterday. I'll just enjoy looking at that pic for a while. Did you see it?  Yes, Again. Posted On: Aug 23 2010 | 10:33 pm Does anyone really think that I like talking about the R word? 'Cause I don't. I hate bringing attention to it because that means that I have to explain when people always ask, "What's the R word?" "Why does it bother you so much?" "Can't you just ignore it?" "Don't you understand that they didn't mean it that way?" The word is r*tarded, it makes me angry and sad when used to describe anything negative, it hurts to the core, and I just don't. To put it simply. I. Just. Don't. If you know me, you know it's not about being PC. It's not about being the Word Police. It's not about trying to control anyone else and make them act in a way that's suitable to me. No. It's about not unnecessarily hurting others. They are lots of other words out there. Lots. Last week, when I heard J*nnif*r An*st*n (letters removed to try to keep away the nosies) say, "Yeah, I got to play dress up. I do it for a living, like a r*tard," I cringed. And then my heart ached because the audience laughed. A group of people, most likely adults, enough to be heard, laughed. Every time I watch TV and hear every other word bleeped out, but then "You're r*tarded" or "He's such a r*tard" gets through, I am reminded that so many people don't feel the way I do. These just aren't inappropriate terms to them. I know it doesn't hit hard to most people that have not been personally influenced by a person with an intellectual disability. I know this. I get it. Personally, though, I got it before Playette was born, too, so I know it's possible. I got it out of compassion and common courtesy. I didn't defend my right to use words that hurt other people. That's because the words weren't more important to me than the actual people. That's all I'm asking of others. Just the very same thing I asked of myself. Nothing more. Dave Hingsburger gets it. I ask that you take a moment to read his words.  The Notebook Posted On: Aug 18 2010 | 12:25 am Last week was busy as we prepared for the start of preschool. I already mentioned that I didn't have the requested composition notebook on hand the first day and had to improvise, but by Day 2, we were good to go. Since this was my first time using this sort of thing, you know, a book to communicate with my child's preschool teacher, I thought that maybe I'd start it out. So I wrote her a little note: "Ms. C, Playette is very good at learning new things quickly. Please allow her to show you her potential. :) She can wash hands, clean up, and uses the potty fairly well (we are working on her telling us 100% of the time - she knows the sign for "potty"). She loves to read books and dress up/play pretend. She is such a fun girl! Today, I provided all of the Thick It that I had left at home. Please let me know when more is needed. She needs one large scoop for every four ounces of liquid. If anything else is needed, I am happy to provide. Thank You, The Mama" == I was totally winging that and probably should have given it more time and attention, but it was five minutes until the bus was due to arrive and I just wanted to get something down. It's hard not to know what's going on during your child's day, especially when they can't tell you in a language that you can understand. == She replied: "Hi The Mama, We are seeing great skills. We are definitely going to help her learn more and achieve appropriate shills by practicing and doing them by herself. We will maximize her full potential. At this point, we are still observing and learning what she can do. We'll let you know what else she needs. So far, she is doing great. She is enjoying playing with her friends and vice versa. She is so adorable. Ms. C Note: I'm sending letter for our picture day on August 24th." == Gotta admit, this made me smile. == Nothing else came last week, so today, I wrote again: "How is Playette doing? Is she making friends? Following routines? Communicating in a way that helps you understand her wants/needs/desires? Please let me know if a list of her ASL signs would be helpful for you to have. Thank you! :)" == Reading that now, I sound like a loon. == And the response: "Hi The Mama, You can check her progress notes when you pick her up everyday. It's going to be seen next to the sign-in sheet. But be reminded, progress reports will be sent Friday or Monday. Yes, she's following directions 85% of the time. If not, then we assist her with that. She tells us what she wants and needs right away. She complies to all of our routine and directions. She may at times say "no" but she can easily be redirected. So far, she's doing great." == Good to hear. Ok, so I'll back off from being Crazy Lady now. Thank you, Composition Book. Though your tenure was short, you've served us well. Bring on the Weekly Reports. WOOT!  Delightfully Boring Posted On: Aug 11 2010 | 7:03 pm That was our drop-off today. After finally getting bus info yesterday at 3:30 pm (I called one final time during our trip to the aquarium), we had quite the crazy morning, but then? It all kinda fell into place. At least I hope it did. From where I was standing it did, anyway. Sure, I realized at the last minute that I actually had to pack her a snack (<--spoiled by generous daycare) and that I didn't buy rubber gloves or a notebook, but I improvised. 1. Goldfish crackers and a cut up pear with a bottle of water. How excited was I that we actually had paper lunch bags in the pantry? VERY. Probably overly. 2. I have no idea why we had a baggie full of gloves under Playette's sink, but we did so I grabbed them. 3. We had manila folders in the office so I grabbed one, stapled a piece of printer paper inside, and wrote "Playette's Notes" in red marker on the outside. I am so proud of myself it's borderline pathetic. So, there I was, rushing around and sweating in my turtleneck and cords and furry boots in August, when I heard a noise. Like a diesel-y truck noise. It took me a few minutes to realize that it wasn't trash day and more than likely that was Playette's bus sitting out in front of the house. I grabbed her, ran downstairs, threw open the door and there it was. The Wow. I soaked that in for about 5 seconds (ok, whatever) and then walked to the door, introduced us to the driver, asked if she would be the only child every day (no, there are two others), where she would sit, and a couple of other things. I told him that we'd see him tomorrow and off he went. Playette was very shy-acting during the whole thing, until I reminded her that the wheels on the bus go round and round. Then she got excited. That girl loves a soundtrack. Hopefully, that's a good sign and she'll be good to go tomorrow. A few minutes later, we left and I drove to the preschool. Her teacher was waiting out front with another little boy that had just gotten off of his bus. Together we walked inside, passing in between the rooms of the children in Head Start screaming on our left and some of their parents outside crying on our right. Once in the room, Playette got to exploring. She was happy. She started playing with the little boy. It was that easy. I talked to the teacher some about what I had brought inside my Santa Sack o' Crap and that was that. I left. No tears from either one of us. I always feel bad that I don't get sad about stuff like this. I'm just glad that from her perspective that it all went smoothly. I'll leave in a few minutes to start the afternoon transition from preschool to daycare. Hopefully, it'll be snooze worthy. That's what I'm hoping for.  Update? Posted On: Aug 10 2010 | 2:06 am There is no update. The teacher was supposed to call me back regarding Playette moving to the morning session, as we had planned and discussed ad nauseum in June, after a meeting they had about the topic at noon. That was a long time ago and everyone has long gone home, I'm sure. I did get a call from the Special Education Student Support Services Director though. Awesome, right? Progress! Except, she rushed through telling me that they needed us to fill out the transportation paperwork since we failed to do so at the IEP. Wow. She was at our IEP. In her office. Where BD and I filled out every paper they gave us, including one that said we had to allow them to "restrain" our daughter on the bus. I had a problem with that. And then they explained that, basically, the 5-point harness seatbelt was considered a restraint to them and if we wanted her strapped in, we had to agree to it. I hate being told that I haven't done something when I know good and well that I have. Or vice versa. She had someone fax me the paperwork - the very same paperwork that the Associate Superintendent confirmed that she had last Thursday - I filled it in, and I faxed it back. Then, I called the Special Education Student Support Services Director back and told her voicemail what I had been trying to tell her whilst she kept cutting me off and rushing me off the phone. The voicemail and I had a much better conversation. I reminded the voicemail about the restraint paperwork (that we "didn't" fill out *cough cough*) and how if it truly was necessary, could they please send me that to fill out again, too, please? I mean, if you're going to try to play me, at least send me the complete packet to fill out againsomemore. It's not like I have anything else to do with my life, right? By the way, I've upgraded to snacking on pita chips and edamame dip. At least that sounds healthy. Though I still love me some graham. Oh, and I ran four miles. Like this situation, it was tortuous, but at least I burned calories. I also had a very good conversation with an advocate/mom in the place where we may move to next. We chatted about schools and she basically talked me off the ledge. So that was good. Tomorrow is another day...  Graham, Graham, Grahaaaammm! Posted On: Aug 9 2010 | 7:08 pm Shout-out to Florida Evans. Ok, first of all, I'm dead wrong for having graham crackers in my house. I'm in the midst of a weight-loss struggle and I have minimal willpower. I thought it was a good idea to purchase them last week (in bulk) when I was in the grocery store as a treat for Playette, but guess what? She's refusing them. Of course. And you know what's extra-nifty about graham crackers? They come in this plastic wrapping that's not re-sealable. So me, being the non-waster that I am, instead of simply putting the remainder in a ziploc bag, I've been feeling obligated to not only eat what she's left on her plate, but I've also been finishing off the leftovers in the wrapping. Consistently. On top of that, probably because I watch too many cooking shows, I've been sprucing the graham crackers up a bit. You know, a little crunchy peanut butter here...a little Nutella there. Total "healthier lifestyle" fail. ===== And in other news that really makes me want to use bad words, Playette's whole "starting preschool on Wednesday" thing is starting to really stress me out. The notes I have from our June IEP say that parents get calls from Transportation 4-7 days before school starts. Well, last Thursday, I still hadn't heard anything so I checked in. The lady that answered the phone told me that Playette's school doesn't have transportation. "Really?" I asked, "That's not what I was told." "Well is she special needs?" "Um, my daughter has special needs, yes." "Oh, well, I don't have any information on those kids." Those kids. She said it like she was spitting it out because it tasted nasty. That's kinda like saying "you people" to me. Even if you don't mean it negatively? Not cool. So, anyway, I called around and around and later that afternoon, I got a call back from one of the Associate Superintendents. She knows me. We've (ahem) talked before. She assured me that the teacher would contact me to confirm Playette's placement in her class and that I would also hear from someone in Transportation on Friday. Well, no. That didn't exactly happen. So I called this morning and got that same lady on the phone in Transportation. She still doesn't use People First Language, by the way, but I tried to model it for her again. I think she laughed at me. I. Don't. Like. Her. She transferred me to someone else who wasn't there. I called the Associate Superintendent's office back and asked if someone could please ask the teacher to call me since I didn't know how to get in touch with her directly. Shortly thereafter, the teacher called! Yay! Yay? Apparently, someone decided, without telling us, that Playette would be in the afternoon session. The one that's impossible for me to get her to and from. Based on what we were told in June, I changed my work schedule so that she could go to preschool in the morning, be picked up by me, dropped off at her daycare, allowing me to come back to work and finish my day before picking her up later in the afternoon. Not perfect, but doable. Not so with a 1045-1345 session. Nevermind the fact that she naps everyday from about 1200-1400. Oh and also? Someone told the teacher to cancel transportation because we don't need it. Awesome, right? I am really craving graham crackers right now.  You better work! Posted On: Jul 29 2010 | 9:35 pm Surprisingly, I didn't know about this campaign. Congratulations to Solana! It'd be great if she won, sure, but I'm glad to know that she'll get to go to NYC and experience the photo shoot, regardless. It's nice to have a 1/10 shot at a cover. That's more than I've ever had. Another part of me wishes she had been chosen by the editorial team, though, and not voters. Eh. You can't have it all, right? I think it's important for all children to see themselves reflected in the day-to-day, whether that be in print, film, toys, books, etc. It's just that our kids, Playette and her peeps, most times aren't even considered simply because of the extra chromo. Now, I understand not being what they're looking for - shoot, I've watched more ANTM than I should admit - but that's not really the case here. I'm just looking for an equal opportunity. This is coming from a mom who realizes that my kids has plenty of strikes against her as it is. Black, female, "disabled"...and she's 3! Anywayz... If you're interested in a talent agency that specializes in supporting people with Ds or other developmental disabilities, learn more here.  Self-Advocates Posted On: Jul 29 2010 | 9:26 pm They totally made me cry.  The School Sitch Posted On: Jul 27 2010 | 6:00 am Since folks asked, here's the deal: First, some background. Playette has been attending the same daycare since she was almost 7 months old. There was a lot of guilt on my end after she was born and we learned her diagnosis and one of the things that really tore me up inside was that she was an only child. I was envious of people who had older children at home that could serve as peer models for their little ones with Ds. Before I had her, I always thought that I would be a SAHM once the baby came. I mean, I thought this for a long time. Way before I even met BD. We talked about it while we were dating. We developed a plan. We saved my salary for months just to make sure that we could live off of one income. And then we got a surprise. All of the sudden, I no longer felt confident that I could give this baby, one that I perceived in the beginning would need some much more than I could give, enough to reach her full potential all on my own. Now, keep in mind that I was an emotional wreck for the first year of Playette's life and take my thoughts back then with a honking grain of salt, k? I have no doubts, knowing what I know now, that any functional stay-at-home parent can provide what is necessary to care for a child with Ds. I mean, if you're good enough for a 46er, you're good enough for a 47er. Contrary to popular belief, a lot of us parents of children with special needs aren't any more extraordinary than any other parent. It's just the way the dice rolled and you do what you have to do when you have to do it. Anyway. All that led up to her starting in daycare shortly after we moved to CA from VA and me heading back to work not too long thereafter. Since then, she's moved from room to room, advancing more or less with her typically developing peers and there hasn't ever been the negative experience that I held my breath and agonized over in her earliest days there. It's been pretty uneventful in the grand scheme of things. We have the same types of issues with the daycare that other parents do, it seems. We're not special-special. I mean, even when Playette wasn't walking and it was recommended to us that she move into the Pre-Toddler room, it was me who hesitated. How could she survive? She'd be trampled! All the other parents would immediately know that something was different about her! All of the other children were walking and she was still crawling! Yes, this is when all the bad stuff would start. Surely. But, no. What happened was that the other kids helped her stand. They hugged her and tried to walk with her. They supported her in ways that they didn't even realize were support. They just wanted to play with her because she was their friend. And then, in her own time, probably in part due to their encouragement and definitely in part due to her determination, she walked. Earlier than we ever expected, even. So, based on our past experiences and our vision for the future, we have decided to enroll Playette in a public preschool program. She'll go for three hours every morning and participate in a class that provides extra help to children with speech and language delays. Because that's her most significant delay at the moment: speech and language. It'll be a small relatively group and they'll do all the typical preschool things, but they'll also be able to dedicate time and attention to all of her IEP goals since ST, PT, and OT will all be conducted on-site. In the afternoons, just in time for lunch, she'll return to her friends in the Toddler room at daycare and there she'll remain until I come and pick her up. She'll play on the same playground, she'll sleep on the same cot, she'll enjoy the same snacks that she has been for a while now. And, then, when she's ready, if that time comes before our time in this town is up, we'll move her to the Preschool room at the daycare. It's just a lot of transition for such a little girl, so we'll watch her and make sure not to make any additional changes until the time is right. I have faith that she'll let us know.  Somebody's Ready Posted On: Jul 26 2010 | 3:31 am  First, the scrunchy face? It still amuses me. So: New fall outfit? Check. Cute little backpack? Check. But: 1. It's July. That shows you how cold it is here. Sorry, rest of country/world that is suffering through sweltering heat waves. We're hogging all the cool temps and lack of humidity. Brr. And 2. School doesn't start until August 11th. Though that sounds reallly early to me - and on a Wednesday?! - we still do have a leetle more time before the bus comes. I love that my girl is so ready to go though. I hope I can get there, too. I can't believe she's off to hang with the big kids so soon!  | |
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