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A continuation of my original blog, "Surviving Motherhood". |
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Welcome to my world of middle school, high school, and motherhood. The life of a mom is never easy, especially as children grow, and especially when you have a special needs child. ** Images For Use By Upgraded+ Only ** |
| So, I'm going to let you in on a few things today. Perhaps I should blog them somewhere else, but I really feel like being here for this for some reason. I feel like I have more of a face here than I do in the anonymity of my other blogs. The anonymity of the other blogs allows me to delve into things and say things that very slim to no people can peruse. The funny part is, those ones are very deep-they encase so much more of me than this particular blog does. However, this one seems to have a bigger platform for me...because I make it public, and everyone can see, though it's not likely people will, people still have the opportunity to find this blog throughout the interwebs and read it if they please. The catch, however, is that I cannot get public comments on my now public thoughts, because of the stipulations that WDC puts on my audience. I'm very curious to figure this out and feel the logistics of it, but at the same time, I know it's fruitless, if only because I don't have the control to fix it. (Thus, the conundrum of my life.) Anywho.... So yes, getting back to my point of blogging here.... My life is all about communication. I don't know why it took 35 years to figure this particular thing out, but there it is. Communication is what drove me to learn to speak when I was an infant. It's what drove me to learn to read when I was 4. It's what drove me to write stories since I was 5. I love communicating, and I love it when people communicate with both me, and each other. I find people fascinating. I'm very philosophical; I like to know what makes people tick. You can ask all the close friends I have, I always ask them what they're feeling and why. I don't know why I do that, I guess it's just because I find it very interesting. Knowing that people trust you, and show certain facets of themselves to you, is both amazing and an honor. I feel very privileged when people let me in on what's going on with them. However, I want to make it clear that I am NOT nosy. Your business is your business, and I don't need to know anything you're not willing to tell me. Likewise, I expect people to know and understand that the same applies to me with them. I don't purposely go out and ask people what's going on with them-I LOATHE small talk. It makes me very uncomfortable, and I'm not sure how to do it properly. But, if they offer up the information to me, I cherish it, and place it safely in my mind somewhere where it won't be accessed by anyone else but me...unless they give me the green light to let other people know too. (Even then, I don't. It's their news/information, I feel it's better shared by them than me.) So I was talking to my best friend the other night, which I feel extremely lucky and blessed to have. There has been a LOT of stress going on in my life right now, and I feel as though I'm drowning in it. People offer to support, but when push comes to shove, they're nowhere around. I've been needing an ear who will listen, and a shoulder I could lean on. I never ask ANYONE to solve anything for me...that's my job, my problems to deal with. But sometimes, when you're drowning, you hope that somewhere out there is a life preserver, or a hand to pull you out before you go under, or a lighthouse to show you the way to safety. One of my biggest problems is suffering through things, and trying to minimize damage to everyone else other than myself. Everyone tends to think I'm okay, because that's what I put out there...but sometimes, there are times when I'm drowning, and I let it be known, and people are perplexed at what to do. I've actually heard the comment "I thought you had it under control", and it both hurts and shames me. It hurts, because it shows me just how long I've been struggling until I finally made it known. It shames me because I feel like I should've had this under control, and shouldn't have to bother anyone about it. That in turn angers and upsets me, and makes me feel like I can't trust people to help me. (Small note here-there is NO ONE on this planet, living or dead or incapacitated, that I fully trust. There is no one that knows everything about me, and I prefer it that way. I'm not a hypocrite-I do not ask people to show me all of them, and then withhold on them. If they choose to show me, I am honored, and I appreciate it. If they choose to hide it, I don't worry about it. That means I'm not privy to that information, and I should leave it alone. I only ask that people respect my privacy and intimacy as well.) Which, of course, in turn makes me attempt to swim while drowning once more when the tide gets too high and I'm going under. My entire life, I've always been about self dependency. This is probably exactly why I'm a control freak. I don't trust anyone else to follow through, or fix it, or take care of it, or do it the way I feel it needs to be done. I have a very quick response with a dire sense of urgency. I am prompt; I am punctual. One of my flaws is that I expect everyone else to extend the same courtesy, and they don't. Hence, I find some people very frustrating. Anyway, so yes, I was talking to my friend, and I told her that I prefer communicating through online platforms than through personal contact. At first, I wasn't quite sure why. But I mulled it over today, and came to the conclusion that it all boils down to communication. There are really only three areas of communication online: ignore, delay, or engage. Most times you either get ignore or engage. Either way, you sort of know where you stand. When you're face to face with someone, they could be looking at you, or looking past you, they don't have to look at you to talk to you, or likewise, they can be looking at you, but NOT talking to you. Too many variables overwhelm me, and I'm not quite sure where I stand, so I prefer that I look at the computer screen and read their text than I have to look at their face and decipher if they're talking to me, someone else, or no one in particular. (I think I'd like to mention here that I am super socially awkward. I don't know how to inject myself into a group discussion, I don't know the proper etiquette for that, and the pressure makes me feel super uncomfortable, but the lack of connection hurts me just as well.) When it's all online, I know where I stand. I'm not talking over someone when they have something to say, as separate text bubbles come up to let people know that person A just spoke, and person B also spoke. Nothing gets lost in the conversation or in translation. I prefer that. The certainty that is discussion through chatting online, blog posts, comments, texts, messaging apps, etc. is comforting to me. I know where I stand, and I know where they stand, and communication is somewhat effortless. It flows so much easier than talking out loud to a person. Also, I'm better at regulating what I say and rounding up my thoughts while I type, whereas if I'm in person, the chances that I blurt something out randomly and embarrass myself are quite assured. Don't get me wrong, I have no problems speaking to the girls when I have something to say. I find that I have to write it out first to make sure it's coherent and a complete thought, and I don't get derailed (though most times, I still do), and when I'm leading a TCM training, I'm able to speak in front of the TCMs I'm training, and take and answer questions easily. It's the social communication aspect that has me flustered. Many times, after an SU meeting has happened, I leave quietly and quickly. I'm not sure how to be social correctly (that's the social awkwardness), and also, I'm not sure what's appropriate to share and what's not. If I have a question of another leader, or my SUM, I'll come home and email them explicitly, keeping the communication between them and myself. And now I feel like a horrible person for saying that. Agh. So there it is. This is a part of me that I'm willing to send out to the internet and let everyone know. |
| Huzzah, it's almost the end of March. Yes, I'm still debating on continuing this. Bear with me please. I have a lot of personal shit going down right now. I don't have a lot of time to blog about the kids, or anything like that, and again, I really don't feel like this is the place to air everything out. Especially the things that are going down in my troop. I don't want that to go out into the big wide internets and come back to me. No thank you. Whatever dramas we are having, we're keeping it tight lipped and out of everyone else's view. Thanks for understanding. Some tidbits for now, to remember this time when it's gone and passed: -Journey sold 450 boxes of cookies this year during Girl Scout cookie season. I'm so super proud of her, it's ridiculous. She has a lot of fans and supporters in all of our friends. I appreciate that immensely. All my girls did a great job selling, I'm really proud of them, and they will be handsomely rewarded for it. All around, good job. -This quarter will be the first quarter where Journey and Ryan are not getting on honor roll. Journey has two C's, one in math, and one in science. There's nothing wrong with a C, so I'm trying to help her grapple with the fact that she doesn't need to beat herself up for it. Unfortunately for her, she's just like her mother-a perfectionist. When things don't go as planned, things go downhill for her. They used to for me, but I've learned coping mechanisms for handling it better. I'm currently trying to teach her those. As for Ryan, I'm not angry about it. At first I was, but he's trying to right his wrong, and I have to give him a lot of credit for that. He's shown great perseverance and that he is made of tougher things with this C. It was at one point an F, so for him to come back from and F to make it a mid C is astonishing to me. He does well when he puts the work in. Sometimes things just overwhelm him. He also gets that from his mother. I'm trying to give him coping mechanisms so he doesn't stress about it too much, and can work productively while being overwhelmed. -Soccer season is upon us again. Don's still coaching, so things should be good still. They're getting most of the team they had in Fall back. -Spring break is here. Now that the kids are older, they're starting to annoy each other more. Fun times for mom, but it is what it is, growing pains and all, and we'll just keep moving through it. -A plan for the future: my dad is coming to stay with us for 10 days in June. It's been almost 8 years since the kids have seen him, or either of my parents. My mom is unable to come, but I think we'll have a great time. Other than that, I'm out for now. I'll see if I want to come back again before another month passes and let you in on some more things. |
| Obviously, it's been an extremely long time since I wrote here. I can give you all the excuses in the world. I could write you a long letter of what I've been going through these days, and why I haven't been here, etc. But I will just put it to you plainly and succinctly: I just didn't feel like being here. I just didn't feel like writing. We've been doing a multitude of things. Gina came for Christmas to spend time with us. New Years came and went. Tax money came and went. Fixing Roz. Getting the kids things they need. Blah blah blah. Life continues to move forward. I don't know why I'm apathetic towards it all. I just am. Right now, putting this all down for posterity feels like an exercise in...ugh. I can't even finish that sentence. Basically put, I don't feel like it really matters. I wanted to make this public for the most part to be a place where people turned to on what it's like to have a child with autism, and also a place to get ideas for Girl Scouts, and also a place to just see what parenting my kids is like...but I draw up no real audience, and frankly, my blog seems quite boring and uninspired. I know that, as far as writing at this point, I'm basically doing it for myself, and to remember when the years keep passing faster and faster, but...I don't know. It slightly frustrates me. How many times can I write about the kids making honor roll? How many times can I write about the harried-ness of Girl Scout cookie time? I basically feel like I blog the same tropes over and over again, just different years and different titles, different age strips. To be honest, I can see why I don't have much of an audience, and when I think of it that way, I think to myself "Why am I even paying a yearly fee to keep this thing open if I don't even feel like writing in it anymore?". Part of that answer is because it houses all my memories of the last 10 years. I can never get that back. I don't have a printer, and I don't have any idea how to even print these pages even if I did. I feel like I'd be cutting off a leg or an arm if I were to leave this place and let my blogs to die. The thought of that hurts too much. But at the same time, everything is the same, over and over again. There's only so many times you can write about it before it becomes annoying mush. I don't want to bore anyone with that. Hell, I don't want to bore myself with that. Hence, the reason I haven't written on here. I don't know. Maybe I should put this blog on an access restriction. Maybe I should write more deep thoughts and things on here. Maybe I should just give it up altogether, call it a great run for 10 years, and say "So long." I don't know anything anymore. Part of me feels like if I just give up, I'm cheating myself, my memory, my kids, and robbing myself of the opportunity to write. But what point is writing when all you ever write about is the same humdrum things? I'm not saying that my life needs to be more unpredictable (egads no, to be completely honest, I prefer routine predictability. When things get unstable, I am truly frightened. No thank you.), but a little excitement from the monotony would be nice. I'm sure no one wants to hear about how school is going humdrum for everyone, or that it's cookie season again, or that it's soccer season again. Blah blah blah. We are, by no means, exciting people. Truth be told, we don't have the kind of money or freedom to BE exciting people. But, we get by, and we do the things we can, and we try to have a good time from it. It's pleasant. Problem is, I don't know how to make pleasant more appealing to everyone else, or even myself. So here I stand, at the crossroads. My yearly membership expires on March 31st. I have the money RIGHT NOW, to pay to renew my membership. By the time my membership expires, I cannot guarantee that I will have that money anymore. The bigger question remains though....Do I have the desire? |
| Things are going good right now. I feel like Don and I are having some disconnected moments, but we're working on that. Other than that, everyone's doing great. Report cards come out in a couple of days; I think Journey did well enough on bringing up her grades that she's going to receive A and B honor roll again. Ryan is doing fantastically this year, and has all A's and one B. This is quite a turn around from last year. Different teachers, different years. The transition to middle school was kind of rough on him last year, but he's handling middle school this year beautifully. All that worry I had last year, and everything's turning up roses this year! So happy about that! Girl Scouts is...well, crazy. I've got 12 girls now, which i think is all I'm going to get for the year. We've got a million activities going, and very little time for badges. I was hoping to start the journey this week, but I think I'll take the time to work on the pen pal letters, and if I happen to get the crab beads in, we'll work on the SWAPS ad mailing them. There's four new girls this year; I'd like to get a chance to know them better before we jump into anymore things, if possible. Oh! I also need to talk to them about Fall Product, our earnings, and the Share the Season patch! I'm hoping that we can purchase some more toys for kids in need from the giving wreath that our school provides. This time, I'm more prepared for what we can do, and how we can pull this off. What I mostly came here to write down is how some things change, yet how some things remain the same. Journey has taken scripting to a different level, now that she's found some commercials she's very fond of. They have this rodent killing product called "Tom Cat", and they always have these commercials about what they're going to do with all the dead mice, and they have them dressed up. performing in theater, or dressed as Evil Knievel and being shot out of a car tail pipe or with a rocket strapped to its back on an old metal roller skate. Journey finds these commercials HILARIOUS, and never misses an opportunity to watch them. Like all things that catch her fancy, all she has to do is watch it once and she has it memorized. She goes around scripting the commercials all the time, especially if someone needs a laugh. Her favorite part of it is the angry meow the cat lets out. She's so cute and funny! Autism is definitely interesting. She also lost control last night when we were talking about how certain things don't exist anymore. Change is very hard for her to accept. She likes things known and predictable; this is why routine is such a big deal for her. When changes happen, it's because she puts them into action; we don't change anything of hers unless she says to. She's the one who decided she didn't want to do Hello Kitty Cafe at night. The radio we kind of had to adapt, as the CD player portion no longer works, and her CDs wouldn't play anymore. She was inconsolable for about a week about it. She couldn't understand why this one thing that used to work for her all the time was suddenly not working, and it frustrated and upset her so much. I decided to get her an auxiliary jack and my old iPod so she could listen to songs at night that way. She took it warily at first, but now she loves it. I downloaded her current favorite song, which is off the Smash Bros. soundtrack. When she was really little, she insisted on playing the same song from the Cars soundtrack over and over again. Then she switched to a certain Metallica song. Then she switched to "Don't Stop Believin'" by Journey, and once the CD player gave out, the Journey song was no more. Now it's the Yoshi song, on repeat, all night, every night. Some change we had to kind of force on her (the CD player not working was the biggest catalyst), but for the most part, all the song changes were her decision. But, I digress. We were talking about Hello Kitty dolls, and how they don't make them anymore. Last year, they seemed to hit their stride, and this year, they're not longer available. This upset her to no end. I hated being the bearer of bad news, but how do you tell an autistic child they're asking for something that you may not even find? I don't think she even understands that that well. I'm lucky I purchased one that I found a couple of months ago. I won't tell her I found it, I want her to be surprised. But i let her know, it may be pretty rare that ones get found. I hope her getting the game she was looking forward to on her 3DS will soften the blow a bit. A good amount of my Christmas shopping is done. I was able to procure Ryan's new 3DS for him within three months. He's quite happy about that, and told me that regardless of what else he gets for Christmas from anyone else, this one gift is the one that will make his Christmas the best. I'm very happy that I could get it for him. He's a great kid, and getting him something like this is my way of saying thanks for being a great kid, helping me out, and doing all the things you have to do, I appreciate you. They don't ask for much, if rarely anything at all. Christmas and birthdays are the only times they get gifts, so I like to give them the things they like most. I've got about 6 things left that I want to get Journey, and about 3 things left that I want to get Ryan. Now that he knows that Santa's not real, he's been cutting back his lists quite a bit. I'm appreciative of it, because it shows that he knows we don't have a lot of funds, but we try our best. He makes it easier on us. Oh, speaking of fairy tale characters, I was tucking Journey into bed one night, when I noticed that baby Tokie (her little pink bunny that she got for Easter a few years ago) was on the floor. I picked her up and asked Journey why she wasn't with big Tokie anymore. She told me that she had taken Tokie off the bed to look for something, pulled Baby Tokie out, and accidentally left her out on the floor, away from the bed. I tucked Baby Tokie back in by big Tokie, and Journey pondered aloud "How did the Easter Bunny bring Tokie to our house anyway? Tokie is so big, how did he fit Tokie in his basket?". I looked at her, perplexed for a moment. Two years ago, Ryan told Journey that the Easter Bunny wasn't real, yet here she was asking a question about the Easter Bunny. "Journey," I started, "Do you remember what Ryan told you about the Easter Bunny?" She nodded and said without hesitation, as though well rehearsed, "The Easter Bunny isn't real." I nodded and told her "That's right, there's no Easter Bunny." "But Mama, how did Tokie get here?" "Journey, Daddy and I are the Easter Bunny," I explained. She looked perplexed once more. "That's not right," she said, "You're Mama and Daddy..." "No Journey, " I interrupted, "Daddy and I pretend to be the Easter Bunny, to give you surprises. We wait until you go to bed, and then we build your Easter basket, and when you wake up in the morning, you think the Easter Bunny has come, but it's actually Daddy and I that put the presents in there," I explained. She looked at me for a moment, then a lightbulb went off over her head, and she exclaimed "Oh, I get it!"  This Santa business ought to be interesting when we finally break it to her! |
| Holy crap. Long time no see. I know, I've been EXTREMELY busy. As usual, Girl Scouts has taken over my life, and now I have four fantasy hockey leagues (which I'm the owner and manager of one), not to mention the room mom duty, regular household duties, and oh yeah, did I mention GIRL SCOUTS?! GOOD LORD. This alternate Fridays thing is really jacking my groove. I find that I have to gather all kinds of things that are due at times we're not meeting to put them all together at the same time. It's very overwhelming and quite maddening. Of course, it's also partly my fault because events keep popping up, and I keep posting them for parents to make decisions on.There's 4 events in the first two weekends of December...cramming everything in at one time. Kinda scary, but if the girls and parents want to do it, then by all means, let's do it. We just finished going on a Fall hike that our SU put on, and I have patches for those. So far, we've done one badge, have earned something like 5 fun patches, we've got pen pals from North Carolina that we're writing to, I'm waiting on some beads that I ordered so we can do a SWAPS swap with a troop in New Jersey, and oh my god, so much more stuff. We are an EXTREMELY busy troop. This Friday, we're throwing a Happy Birthday Juliette Gordon Low (the founder of Girl Scouts) Birthday Bash for a local Daisy troop. I'm trying with all my might to gather all the supplies and get everything taken care of by Friday. I hope I make it without losing my mind. I had this bright idea to print out coloring books that tell the story of Juliette Gordon Low, which is a great idea, but there are 14 pages to this book, and there are 24 girls to make them for, so....yeah. Lots of printing, collating, stapling, etc. Loads of fun. Then I need to find the stuff for Kim's game, which I need to remind myself that I shouldn't put too many objects on the tray, as these girls we're hosting are only 5 and 6, so I don't want to overstimulate them. DRAT! I need to come up with a prize! Off to the store on Thursday I guess. *Sigh.* It seems my work is never done. Fall Product is due, and we're trying to gather up all the money from that. We're just waiting on a few co-workers of Don's, and the three teachers that Journey hit up at school. She did an AMAZING job selling this year! She earned 7 of 9 patches available! Her vest is going to be so full! I have four other girls that are currently selling online as well, and they're doing fantastic! We've earned over $160 for our troop with just these four girls so far! I'm excited to see what the other girls bring in as well! I'm going to ask the girls if they want to buy toys for the less fortunate kids again this Christmas, or if they'd rather do something like decorate and carol at the local nursing home. That reminds me, I need to put in for that patch and send out the funds. Now if only I could find the ordering form in this mountain of paperwork I have going on my desk... Hockey leagues are doing good. I don't have many problems with them, other than when the guys are being a little dramatic. (Yes, it actually happens. I find it both aggravating and hilarious at the same time.) The only stress from that is keeping all my guys current, setting my teams, checking that the players I've set are active for the night, and having to find replacements for those that get injured. Compared to Girl Scouts, this task is an easy breather. I've been doing it for about 9 years, so it's like breathing to me. I look forward to it every year. Doesn't mean I don't lose my cool when I'm losing or close to losing though, ha ha! The kids are doing good. Report cards are coming out in a couple of weeks, and I've been checking HAC every day to make sure everyone's doing okay. Ryan gets to re-do some assignments that were missed or low in his World History class, which is really good. Journey's missing one assignment that could totally make or break her grade in writing, so I've contacted her teacher to see if we can get that fixed. Hopefully we'll get it figured out, and hopefully, we will be in attendance of the Honor Roll assembly that's happening on November 6th. (That day is also Donuts with Dads through the PTA, and that night is a Girl Scout meeting.) (20 minutes later...) Sorry, got distracted. Had to call Don about the dates he needs to take off, and then helped with some homework, and came up with a plan for dinner, had to email some people and respond to some email...again, SUPER busy. I laugh at people who sit there and assume that I do nothing all day. I may be a slacker on housework, but I am SUPER productive and on top of organizing everything else. So little time in the day to do what needs to be done. I barely wind down enough to go to sleep at night. Holidays are starting to come up. Journey was going to be Hello Kitty for Halloween this year, as she got the costume for it for Christmas last year, but then my friend sent a picture of a little girl with stuffed cats pinned to a robe and other things, going as the Crazy Cat Lady. I looked at the picture, thought to myself "We have everything we need to pull this off", waited till Journey came home from school, showed it to her, and she laughed for days. I asked her if she would rather do that for Halloween instead, and was met with a very loud boisterous yes. So this year, we're pinning some Webkinz cats to her robe, doing half her hair up in curlers, stuffing her pockets full of Dixon toys, and having her carry around a bag of cat treats, shuffling down the sidewalk. It will be hilarious. Ryan has decided that he's not dressing up this Halloween, and I don't think he's going to dress up anymore again. Either way, I'm fine by it. Less money we have to spend to come up with a costume, but I'm not going to hold it against him if he decides sometime down the road that he does want to trick or treat again. I know that when I was 16-18, I dressed as a few different things and went around the neighborhood with my friends. I felt kind of forced to do it when I was in middle school, and for that, I wasn't very happy about it, but when high school came, and it was Junior year, my friends and I had a lot of fun with it. We'll see what the future holds. Thanksgiving comes after Halloween, and Don will be taking his floating holiday on Black Friday. Not that we go shopping on that day (besides, why go into the stores when you can just shop online from your computer in your comfy pajamas on Cyber Monday?), but it will be nice to have that family time together. He'll get off early that Wednesday, which the kids don't have school that day, and then we'll have a 4 day weekend. It will be nice. I'm still debating if we're going to go to the annual Town Christmas Tree Lighting, which seems to get packed to the max each year. Only time will tell. We'll see if I feel up to dealing with crowds of people that night. I would say we can just stay home and put up the Christmas tree, but Don decided to throw it out after last year (his reasoning is that it was old and falling apart. Personally, it WAS old, but it wasn't really in disrepair. He just didn't want to deal with putting it away properly, and he panicked about having a tree when we now have a cat, who is probably going to climb the blasted thing.), so it looks like we'll be shopping for a new tree this year as well. *Sigh.* And then there's Christmas. The secret of Santa is still going strong for Journey. Ryan has yet to tell her anything. I think she's starting to get to know though. I've flubbed up a few times and said that "WE" got her something when actually "SANTA" got her that something. She also has this sense that we're the ones buying things. If she happens to come to that conclusion, and she ousts us before we get a chance to sit her down and tell her, more power to her. I am seriously contemplating no longer wrapping presents once they both know there's no Santa. Wrapping is a serious pain in my ass. I can't cut, I can't tape, I can't wrap properly, and I am NOT wasting a ton of money on tissue paper and bags. I may just gather all their things up in a large box, then wrap the box, and call it done. There. One present each. All the stuff you were interested in, or things I thought you'd like. Having to wrap everything individually is a royal pain in the ass. I don't like it. So.... Other than that, I think that's it. If you don't hear from me again any time soon, know that Girl Scouts took me over, and I'll try to find some time to write down the things we're doing and did and whatnot (family AND Girl Scout related), and any other things my brain may need to remember later on. |
| Today was Journey's annual IEP evaluation. It's a good yet bad thing for me: it's good to get some feedback on how she's doing at the beginning of the year, because I like to know that she's starting out good. The bad thing is that, it's at the beginning of the year, and we're making goals for her at the beginning of the year without knowing how the year is going to play out yet. We basically have to guess at what her weaknesses are, and hope to work with her to build them before they become a deficit. Seeing how things panned out the year previously helps, but as each grade progresses harder than the last, it kind of hurts us in the short term to decide such things at such an early junction in her school year. We will meet two other times this school year: once to discuss the evaluations that the school is giving her (as by the beginning of next year, we have to re-write her entire IEP off these evaluations to see what she qualifies for), and once again to re-write the actual IEP for the 2016-2017 school year. This is to head off any troubles she may encounter as she heads to middle school on the IEP that we write for her during 5th grade. All these evaluations will carry her into 7th grade, where we will once more take evaluations and re-write the IEP for what accommodations she needs then. In all truthfulness, I'm glad we're getting this all put together for her now. I just hope we can guesstimate correctly what would work best for her as we re-write this. Not too plussed though, as if there's anything we don't find appealing, or if there's something we feel is lacking, we can always call the school up and ask for another IEP meeting. As her parents, that's our right. Her teacher spoke very highly of her, and was quite impressed with her. She said her math skills and science skills are amazing, and she's developing quite well. I was thrilled to hear that. Journey also makes it her personal mission to get the teachers to know her. She shows off her outfit to them, or how her hair was braided that day, or what her shoes look like, or how her nails were painted. She talks about Dixon, and her family, and draws pictures for them. She always compliments them, and asks how their day is. She's quite charming. All her teachers have just adored her. I'm sure as middle school comes, there may be some teachers who don't, but poo on them, Journey is a very sweet, captivating girl. She constantly wins hearts, and I'm proud to admit that I'm her mom. Our SLP talked to us about how more independent she's becoming, and how comfortable she's gotten with the kids that are sitting next to her. I told her about the social story that she and I wrote together, how it helped Journey learn coping mechanisms to keep her cool on the playground when things don't go the way she planned them to. Her special ed teacher, our first special ed teacher, told us how she was doing so far, and said she was so glad to get to see how she's grown since she last worked with her, which was in kindergarten. "The Journey you see now...the talkative, social, confident Journey, has been years in the making. She has grown so much since she started school here, and has achieved so much in these years. We've waited years for this, put in a lot of hard work, spent hours,days, months, years and it's starting to pay off. What you see today, is a cumulative of the last 6 years in the making," I told all the participants of the IEP meeting. I was overjoyed to be sharing this with them. Our special ed teacher has known Journey since she was a 4 year old, hardly talking, spinning in circles, not following directions, not paying attention at centers, not making eye contact, not responding to her name. The same 4 year old who wouldn't eat anything but turkey and American cheese lunchables with Oreo cookies, every single day, the entire two years of pre-k and kindergarten. The same 4 year old who didn't potty train till she was 4 months into the school year. The same 4 year old that couldn't verbalize her feelings, needs and desires, who did routing language when asked questions. Look at her. Look at how far she's come. Sorry, I'm crying. I just can't believe how far she's come. I look back at the entries in Surviving Motherhood, and I remember just how hard that time was, and everything we had to go through to get through it. Look at where we are now. Yes, my daughter is still autistic, and yes, she still has some deficiencies, but it just blows me away how she is now. If you had asked me when she was 3, 4 years old if I ever thought she was going to be where she is today, I would've told you an honest "I don't think so." Not that i didn't believe in Journey, but my life motto is to hope for the best, but expect the worst. I'd never gone through something like this before, I didn't personally know any autistic kids, so I wasn't sure what the quality of their lives and learning entailed. I did whatever I could for her though. I took her to developmental pediatricians. I put her in social groups like Girl Scouts. I took her to sports that worked with her low muscle tone. I took her to therapies. I went over all her IEPs. I kept in constant contact with all her teachers and specialists. I work with her still, to this day, tirelessly, over social stories, and "wh" questions. We talk about her day, her interactions, what she's working on, we ALWAYS keep the lines of communication open. I hope she knows, without a doubt, that I am always here for her. I will ALWAYS be in her corner. I will fight for her all day every day. Sorry for the rant there, train got derailed for a moment, back to the IEP meeting...we brought in the diagnosis that we got from Dr. S at Children's National, advised them as soon as a report came available, we would bring it to them. They set up for what evaluations they were doing with her, let us see the schedule, and we went on our merry way. The evaluations will not determine if she qualifies for an IEP, as with the current IEP and the new diagnosis, she's still listed under the disability of autism, second ADHD. Things will continue on as scheduled, which is good news. In other news, Journey is showing more signs of independence, and (with a little bit of watching over from Ryan) has been going outside and playing with a neighborhood girl who just moved in a couple of weeks ago, and is also a new student in Journey's class. The girl, Danielle, will come knock on our door and ask if Journey can come out to play. I advise her that if Journey's done with her homework, she can. Ryan, being a great big brother and a good son, willingly goes outside with her to keep an eye on her, as I'm still not entirely comfortable with two 9 year old girls running around the complex by themselves. Ryan's 12, and knows what to do in emergency situations, is logical and knows when to bring her home, so I trust him to keep an eye on her and her friend while they wander about the playgrounds. The longest they stay out anyway is about an hour, and then either my two have to come home because Ryan has soccer practice he has to get ready for, or Danielle has to go back home. They have a good time though. Today, Journey went out first to go get Danielle from her house. I'm glad she has a neighborhood friend. My Junior group is underway. We just completed a badge within a meeting last meeting, and this coming meeting, we're going to discuss throwing a Julliette Gordon Low Halloween Birthday Bash for a local Daisy troop. I have some ideas about snacks, activities, crafts, etc., but I'll only throw them out as ideas, and let the girls decide for themselves. I'm working very hard on letting the girls make decisions about the troop and what they want to do with it themselves a reality. When they were Brownies, I pretty much told them "This is what we're going to do" as far as badges go, occasionally asking for input on what other badges they wanted to try. I always asked them what they wanted to do with the cookie money; as it was theirs that they earned. This year, I advised them I'd like them to take more leadership roles in the troop, in themselves, in each other, and for other younger troops. This resulting party will show me what the girls are made of. I'm very excited to find out! Ryan asked if he could join floor hockey after school at his school gym in November. It's after the soccer season ends, and personally, I'm quite happy about it, as it keeps him active after soccer season is over. We still need to find out all the equipment he'll need, but I gave him the stick I played with when I was younger since the one he had that we bought him a few years ago was too small for him. He passed it down to Journey instead. I hope he has a lot of fun with it. Next time when something happens, I'll be sure to come a little earlier and write more frequently so I don't have monster blogs like this one is. *P.S. At the end of the IEP meeting, Journey's teacher blurted out "Do you want to be room mom?" I was slightly taken aback, because usually I have to fill out the application, hope the teacher accepts, and then I have to usually share room mom with 2-4 other parents. She just straight out asked me if I would, and I happily agreed to.* |
| The car ride to Rockville was a long one. So long, in fact, that Journey lost her literal lunch, all over the backseat of the car. I'm glad we carry a towel. We made it with about a half an hour to spare (we didn't know how traffic was going to be getting there), and checked in and did everything we were asked to do, and I filled out every form that was given to me. The people at Children's National are very swift and efficient. Most developmental pediatrician's offices, they are. There was an occasional time at Dr. V's when we waited to be seen for over an hour, but that was a mistake on the front desk. Usually, they've very efficient in getting you there, checked in, and ready for the visit with the doctor. When we were getting Journey weighed and measured, the nurse told us that she thought very highly of Dr. S, and that she's very thorough, and listens intently. The hope burgeoning in my heart began to grow a little more. As we waited, I told Don, this is it. This is the last time I'm going to take her to a new developmental pediatrician. If our answer is no on the autism, I'm just going to let it go, and move on. I'm through arguing with doctors, and all that matters at this point is that her school has her educationally diagnosed to hold onto her IEP. Don nodded, and said if that's what I wanted to do, then that's what we'd do. We walked into the doctor's room, me with my bulging file folder, filled to the brim with every evaluation that's been done on her through her school career, her newest IEP, all her new IEP goals, the educational diagnosis letter, the diagnosis letter from Dr. V, the one from Kennedy Kreiger. I am very diligent; I keep records like no one's business. Dr. S was thrilled about this. When she walked in and asked us about why we were there, I told her "She's been seen by two different developmental places, and nothing was said of it, but when she was evaluated at school for her IEP, she was educationally diagnosed as autistic. What does the autism specialist for the school county board see that they don't?" She began asking me questions. She was very pinpoint on certain questions, to which we had very pinpoint answers to. She talked to Journey, and noted how she didn't make direct eye contact, and how she was scratching herself randomly throughout the whole conversation, and how she always turned the conversation back to cats. "Journey, do you know the different breeds of cats?" Dr. S asked her. "Oh, I don't remember them all, but I remember..." and she began to ramble them off, as though from a script in her head. Siamese, Burmese, American Short Hair, American Bob Tail, Munchkin, Maine Coon....ones most kids don't know. She knows, because she studies them. She only ever borrows cat books from her school library, and though she's not a very big reader, she'll look through all the pictures to see the varying differences of each breed, and have a general idea about them. Her friend Sam did a wonderful thing for her, and bought her a book about all the different breeds of cats, with pictures, and she loves that book so much. The spine is starting to give out with all the times she's read it. She told Dr. S how she likes to play kitties at school, and how she has imaginary kitties, and our real kitty Dixon. It was a very cat centered visit. (These days, you'd be hard to find a visit with Journey that ISN'T cat centered!) Dr. S asked to look over any paperwork that we had, which I handed her the loads of. She began to read through it, asking questions here or there. "How was her speech when she was young?" I told her about how when she was very small and she couldn't tell us how she felt, or what was going on, how she'd meow. The times she'd cry or holler because she just couldn't handle what was being asked of her. She was so lost, confused to it all, and had no words. We told her how after 2 years of age, her language just stopped. It stagnated. We told her about Child Find, and how they told us they would rather wait for her to go to school to see if she needed the help. We told her how she qualified for speech when she was in pre-k, but the SLP wouldn't make appointments to see her. We told her how, finally, after two years of running around, the school found a new SLP that re-evaluated her, and said, yes, she needs this help so much, and I will help her. I sang the praises of Mrs. P, and how we've worked tirelessly together for the last 5 years, getting Journey to where she is now. Dr. S then asked me of her fine and gross motor skills. I told her how Journey used to have adaptive PE, and how we worked with an occupational therapist for the greater part of 2 years before Miss Kristen left. I advised that I would love to take her to another occupational therapist, hoping that maybe she would write a referral for us. I'll make some calls and see what I can do. I think we really missed it a lot more last year than any other time. Dr. S asked about her socialization. Journey explained that she has friends, and she tries to play with them on the playground. I advised that she was in a group setting in Girl Scouts, and I attempted to teach inclusion to both the girls and Journey. "Does Journey interact with any of the girls outside of Girl Scouts?" "Not often, and even then, only with about 3 of them, with whom she's most comfortable with," I advised her. The thing about Journey is, she doesn't SEEK OUT social interaction, but when suggested, she has learned to agree and play. It used to be she would wander around the playground and keep to herself. A friend would come ask her to play, and she'd just walk away. Many times her friend Spencer would be so forlorn, asking her to play with him, and she just didn't get it. It took a lot of curating on my part to get her to see that someone would like to play with her, and if she feels so inclined, perhaps she could play something with them. She JUST THIS YEAR learned that if someone wants to play something else OTHER than what she's playing, that she can say "Okay" and go find something else to do. She used to break down in tears when her friend wouldn't play what she wanted to play. She didn't understand why her friends didn't want to play kitty all the time like she did. She had to learn that kids like to play many different things, and sometimes, they just don't feel like playing kitty. She has a great coping mechanism in place for this, and the social story that Mrs. P and I wrote has worked wonders for her. Dr. S read some things, asked us a few more questions, asked Journey to describe a few more things in her day (she was starting to get hesitant at this point...I think we hit her limit of daily inquiries), and then came out with her conclusion. "I agree, she does have ADHD, she was diagnosed correctly for that. However, I'm sorry to see that those she went to before completely missed what was seen by the autism specialist, and by what I believe to be true-she's autistic. There's more to her story than what ADHD can answer. The socialization issues, the deep knowledge of limited interests, the speech pragmatics, the routines, she shows a bit of rigidity in her thinking, the lack of eye contact...it's all there. She has it, and I don't know why they never saw it." I could have cried. I could have kissed her. A doctor saw it. They saw what we were talking about. They saw the patterns, the quirks, all the things we've gone through since she was three, all the things we had to go through, all the work we've put in, all the work we'll still be putting in, it was finally seen. She suggested us to also take a more in depth evaluations through Children's National Autism Center. I will be making a call to schedule that as soon as possible. She advised me that opinions differ from specialist to specialist (which, she believes is why Dr, V and Kennedy Kreiger's developmental center didn't catch that she had it-Dr. V seemed to have only looked for the classic signs of it, and how it presented for a boy. Girls present differently, and Dr. S knew this. She saw the differences, and she saw how that matched to her, and she came out with the diagnosis), but she feels that, if anyone can validate her diagnosis, it will be Children's National's team to do it, as there's a group of them that work these evaluations, instead of just one person who may or may not be aware of all the variables. As of Tuesday, September 15th of 2015, Journey has been officially medically diagnosed as autistic. Some people grieve when they get that diagnosis. Me? I've been waiting YEARS for an explanation. I've always had an inkling, a hunch. I always felt there was something more. When the autism specialist with the school saw it and educationally diagnosed her with it, I was kind of shocked. I knew something was up, and like I said, I had a hunch that this was it, but when she said those words, relief flooded through me. They saw it too. They saw what made my baby different, and they were going to help her. Just as they did when she was 4 and first entered pre-k. So, what does it matter that she has the medical diagnosis now, you ask. She's had it on her IEP for two years now. Here's the biggest thing about this beautiful medical piece of paper: if the school ever says she doesn't qualify for services (which I don't think they ever will, but just in case), we can show them this diagnosis and say "Yes, she DOES." This will help us get help through the state for her. This will give us referrals for her care. This will allow us to go through or state's pathfinders and ARC. This opens up the door for her. That's how big this is. I've waited about 6 years for this day. |
| We had our first girl scout meeting on Friday, and I think it went quite well. We have a new girl, who is a bit timid, quiet and shy. She was fearful of interrupting, and didn't want to cause a commotion, but I let her know that if she ever needed something, to just let us know and we would help her. Journey and I are meeting up with her and her mom tomorrow at the park to get to know her better and hopefully make her feel a bit more comfortable by the time next meeting comes around. My organizer advised me that she has 5 more girls that she would like to place, and if I would be willing to take them. The thought of 14 is exhilarating, but a little leery! Will I be able to handle this many girls? I don't see why not, I was able to handle 12 when we had them. Journey's thought is the more the merrier, and I think the girls would be excited to have that many girls in our troop. They were sad when we went from 12 to 8, so hopefully adding a few more will please them! I'd like to hold a parent meeting sometime this coming week if I can get all the parent information as soon as possible, as I need to purchase things for the troop, and I need money in order to do that. My 9 girls already paid, but if I'm adding 5 more, I need to get that many more badges, vests, sashes and insignia, journey awards and numerous other things. The only time the mobile shop is around will be the 18th, which is the day of our meeting, and I'd like to get all of our stuff by that time, give it to the girls, and get moving on all of this. I was going to start with the drawing badge, because I don't have all the things I need to go over the journey yet, but by the time I go to the shop, I might be ready. I'm not sure. I'd like to look some stuff up in the journey books before I pull it out and throw it out there for the girls. I'd really rather not order through the mail at this time, but I will if I have to. I'm excited to put this all together and get things moving. It sucks that we only have something like 15 meetings, but hopefully we can do all of this and put it together and have a great year. Maybe I'll talk to the parents and see about doing it every Friday...I'm not sure. I had a whole mess of parents at my disposal last meeting, although only my 2nd adult mom was in the room. The rest of them were in the hallway chatting with each other. I don't know if this is a good thing, or something I need to put them to work with, or what. For now, it is what it is, and I guess if there's an emergency, the parents will be right there to help. The girls asked if we could have snack, but I'm worried that it will cut into our meeting time, and we don't have very many meetings to go through everything.  It's hard to say. I just feel like we're being cut short, and there's not much for us to be able to do in such a little amount of time. That's my biggest worry; that we don't have much time to do anything. I added a half an hour to each meeting, but if we're doing snack, the girls take 20 minutes just to do that, and it doesn't leave us much time to work. I'll have to let them know this next meeting. They might be disappointed, but we have to try and work as much as we can in what little time we have. This every other Friday deal is kinda raw. I understand that the parents need it that way because they're very busy, but I feel like I can't get much done when I only have 15 meetings in the year. *Sigh.*Oh well, it is what it is, and we'll try our best to get through it and put it all together. We'll see what badges we can do, and hopefully work on the journey, and get things moving. Perhaps I have too many plans for this year, and need to cut back. I'd hate to do that, but if that's what needs to be done, I guess that's what I'll have to do. |
| Sometimes, I wait it out on writing a blog post. Most of my days are filled with quiet solitude now that the kids are in school, and I find I don't have much to write about. Days turn into weeks, and I find I've neglected my little corner of the site. It's not because I don't feel like it, it's more that I just don't have much to say at the time. Well, today I do, so I'm writing. Journey's been bringing home graded work from the first two weeks of school, and I'm blown away by it. She has very thoughtful answers when she's expected to write a paragraph on what she's read, and it's all in her own writing. Last year, any writing that needed to be done was done by her special ed aides. This year, she's writing it all on her own, and I'm quite impressed with her. The only way her penmanship is going to get better is if they let her write it herself. I've been telling them that since 2nd grade, but they always tell me they have the aides do it because it's faster, and more legible. That's not the point though. She needs to learn, she can only get better by practicing. I'm extremely grateful that they're doing that for her this year. Every thing she was bringing home, A after A after A. 93% to 100%, and everything in between that A scale. She truly has the hang of 4th grade so far. I am brought to happy, thrilled, overjoyed tears. She has come so, so far. 2nd grade was a struggle for her, and I feared the worse. Her medication was the turn around that she needed. That one little Concerta pill each morning has made all the difference. Not to say that Journey hasn't made great strides on her own-she has, and it's very evident! But the pill has helped her focus and put her best foot forward, and now, there's no looking back. She's starting to grasp so many things now, it's all starting to make sense for her. I don't know how much help she's receiving from her special ed teacher or her special ed aides, but from what I've seen of her work so far, she's doing it in all her own handwriting. She can explain the concepts to me. She even answers the rhetorical questions about the assignment. It's amazing. I am so extremely proud of her. She makes a serious effort to do her very best, and it shows. The A's are evident of this. Not to say I wasn't proud of Ryan and his grades when he was this age; it was more that he was born advanced, so I naturally expected great things from him. Journey, however, I always worried a bit about. She was developmentally behind by a year and half those first couple of years. I never knew if she'd be able to handle the pressure of getting actual alphabet grades, but I let go of expectations with her, and let her find her own way, and hoped for the best. She needed a little bit of help, but she proved she could do it. So far this year, she's proving she's much more than capable, she's got the command of making great things happen. It's all within her control, she is the master of her own destiny. I feel bad for Ryan, because I always pushed him to be better than he was every year before, and though I still have the expectation that he should strive to be the very best he can be, that phrase alone has siphoned off the pressure, as I'm not asking for top of the class anymore, I'm asking for personal best, or at least the effort to get close to personal best. I know that things get harder the farther you go in school, so I've laid off quite a bit on him. If he bombs a test, he needs to learn to study. I'm not going to get upset with him, I'm just going to let him know I'm not thrilled with the grade, and he needs to study better. Journey, I didn't have expectations for. With her developmental delays, I wasn't sure what she was capable of, so I let go, and I hoped for the best. She has exceeded any hopes I had, and I'm so very proud of her. She's an amazing student. Things are coming around for her quite well. She is not at this point quite as emotionally mature as her grade aged counterparts, but she's getting there...and in a way, I'm kind of glad she's not. I would love for her to hold onto her imagination just a little bit longer. Kids these days try to become so mature at such young ages. They start talking about things like boyfriends and girlfriends and dating and obsessing over their looks, some girls over their weight already, and the fads and trends of the day. Journey isn't interested in all that right now. She'd much rather play with her imaginary kitties, and though that gets a lot of strange looks and scoffs from her classmates, it doesn't entirely faze her all that much. She likes doing what she's doing, and for that, I stand behind her no matter what. We've been having a lot of Mama/Journey time these last few weeks (her request, and I am happy to oblige), and it just amazes me the way she speaks. She is a very deep, introspective person. She pays attention to a lot more things than we think she does. Even when she's quiet, she's always paying attention and thinking. We were talking about how it is, meeting new people. I told her how I don't feel comfortable talking to strangers, especially about personal things. She advised me that she's mostly shy, but after being around someone a few times, she'll introduce herself and make a new friend. I'm quite impressed with her. She's this amazing little person (well, not quite so little anymore!) that I've waited ages to meet. She's finally letting me into her mind, and showing me her personality. She was like a closed book for so long, and we had to get abridged versions and little sneak peeks into her. It's as if, just this summer, she has opened a door, and is exploring and expressing herself in ways I wasn't sure she would ever do. She is showing me each day that, yes, she is like me in some ways, but also, she is very much her own person, and oh my god am I ever proud of the person she is. I've never met anyone like her before. She fascinates and amazes me every day. (I know, I know, all this love for Journey, where's the love for Ryan, right? I swear I'll write an entry about him sometime soon!) I truly hope that she finds people that get her while she's in school. She has friends that accept her for who she is, which I'm grateful for, but I really hope that she finds someone that just GETS her, on all her levels. She's definitely someone worth getting to know, and I'm not just saying that because I'm her mother. If we weren't related, I'd be drawn to her, and I'd befriend her. She is a very interesting person. Our first Junior meeting is happening on Friday. I THINK I have 8 girls, but I'm not sure how many are going to actually show up. I have a new girl coming though, that is new to our troop this year. I hope she enjoys being in our troop. I think this year, other than the financial literacy and cookie business badges, the journey and the badge that goes with it for the take action project, I'm going to let my girls make the decisions this year. They're Juniors now, they're finally old enough. I can't wait to see what they come up with. |
| My sweet love turned nine yesterday. Time has seriously flown by. Facebook does this thing now, where they show you some of the statuses that you've made over the years, and I saw all of them yesterday wishing my daughter a happy birthday, from her first birthday, to now. I have very thoroughly documented her life, and though I have written some of Ryan too, his is not quite as well documented as hers is. Every year, I fall more in love with her. I love the way her mind works, I love the stories and the thoughts in her head. She remembers so many days of just, what I think, are boring and mundane days, and she just remembers these little tidbits that she enjoyed or found amusing, or had a little bit of some emotion in it. Her mind is a calendar of small events. Perhaps they are big events to her? Either way, I'm glad to hear about them again. I can't believe4 it was only two years ago that she started opening up and remembering things. She started giving me reasons of why she behaved the way she did, and it was astounding! I've longed for her words and explanations, and for the last two years, I have finally got them. She's totally unique, and sometimes very mysterious. I love picking her brain and getting her thoughts though, she always has a fresh perspective. She had a very wonderful birthday party, where 13 of her friends showed up and showered her with gifts! She's a very blessed little girl to have so many wonderful friends that love and care about her. She was very spoiled that day, given so many kitty/Hello Kitty gifts! Her friends know her so well! The party venue was very accommodating (I think maybe a little TOO accommodating, as there were some wild boys running around jumping off benches. I had to put the squash on that a couple of times), but all in all, it was a great party. The froyo was yummy, the kids loved getting shirts and their goody bags made by the froyo shop, and I think a good time was had by all. I would easily do it again if she wanted to. We shall see though. Yesterday, on her actual birthday, her friend invited her to his birthday party (his birthday is today) to play laser tag. She was ecstatic to see one of her best friends there, and had a grand time with the boys, playing laser tag for most of the afternoon. Afterwards, she changed into something a little more fancy, and we took her to her favorite restaurant for dinner. She got a gift card from a friend at her birthday party for ice cream, so we went to the ice cream shop and got some dessert. I'd like to think it was a good day for her. She was thrilled that it was my night to put her to bed, as she wanted to sit and talk with me for awhile. I'm more than happy to oblige, as long as she's in bed by 9:30. We'll be getting to spend more nights together, just me and her, as soccer practice starts this Tuesday, and Don and Ryan will be out until 7 pm Tuesdays and Thursdays. We have a little bit of scheduling conflicts, as my girl scout meetings have moved from directly after school on Wednesdays to 6 pm to 7:30 pm on alternating Fridays. Unfortunately, some of the games that Don and Ryan go to are on some of those Fridays. We think we have a plan to get this all figured out, so hopefully we can get it done the way it needs to be, and we should be okay. |
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