Sunday, August 09, 2020

Watching My Stories...

 Hello? Hi? Is this thing on? Yes?

Ahem...

Hi there. How are you? Me? I'm... okay.

My brother and sister-in-law visited last night. and my SIL asked me just that. And I answered... just that.

Okay.

Which she questioned, and I think I probably said something like. "Yeah." 

But Hubby elaborated for me and told how my back is always hurting me all the time.

And SIL asked if I ever started going back to chiropractic care.

"Yes, I go all the time. Twice a week for awhile now. Doesn't do a darn thing."

To which Hubby elaborated that, "Well, it's helping structurally. But doesn't help with the pain."

I did then mention that I'm in line to get a nerve stimulator placed.

To which my mom said she/we've/I've heard from lots of people about how much this has helped them. "In fact, just today, I was talking to..."

Oh, good, great! SIL is happy for me that I'll have some relief once this procedure is done.

Why am I telling you all this? Because... did you notice how many people it took to tell MY story? Both Hubby and Mom filled in the conversational part of this back and forth, telling what I'm going through and what MY plan for relief is.

And, in a way, I'm grateful for this. Go ahead. Speak for me. It's okay. I'm used to it. 

Another example...

Visiting my in-laws. Just the two of them, and the 3 of us. No other distractions. Just sitting and talking. Except me. Not much.

Except, hey, I do have this thing to mention. Here I go, mentioning it...

...And then Hubby does the "Oh yeah," thing, and goes forward with the story himself.

A little while later, the same exact thing. Except this time it's Sweetie taking the reins from me, galloping along with her version of my story.

Granted, this was a month or more ago and I have no clue at all what either story I was bringing up at the time was about. It very well could have been - probably was - a stories that "starred" Hubby in the first one, and Sweetie in the second one. So, sure. They may have been their stories to share. I don't know. But maybe they weren't? In any case, I presented two different stories/conversation starters and both times they were taken from me by others.

And, eh. That's okay. I guess. Go ahead. They're better conversationalists than I am.

(which is saying a lot, given Sweetie's Autism diagnosis. A diagnosis primarily known for its antisocial tendencies. And, yes, she is definitely antisocial.)

I could tell you all sorts of other examples of this. I couldn't tell you how many times, for example, my large family has been gathered and something comes up and I want to say something relevant to whatever is being said, but the back and forth banter is just so on top of each other that there's no butting in with my maybe/maybe not interesting addition to the topic. So what do I do? I end up raising my hand, like I'm in stinkin' 3rd grade, to let people know that I have something to say. So everyone stops. And waits. Waiting for me to say my certainly highly interesting and witty comment on the overall conversation. Which now, in this so-quiet-you-could-hear-a-pin-drop turn of events, seems to be anything but interesting and witty. Pretty stupid, actually. Aw, never mind. Go back to what you were saying...

I need to take a course on how to be a good conversationalist. Back and forth with one or two other people? Fine. As part of a group where we're really working together to solve an issue and hear from each other and work something out? I've got it! But just casually hanging out with others.... in a group larger than 4 or 5? They talk. I listen. Or one or the other of them "helps" me out by expanding on the story I started.

And I let them. And I don't mind.

Well, you know what? I kind of mind. 

I'm the youngest in my family. So, even though I'm now in my mid 40's, I'm still seen as the baby. Also, we 3 happen to live with my parents for now. This doesn't help me gain any headway as being seen as my own independent adult. I'm a naturally quiet person. I'm a "do gooder" too. I tend to always want to be doing what I should be doing, so that others don't think poorly of me. All this. It doesn't help. I'm a much better writer than I am a speaker. I have never learned to have a great conversation with anyone. Or, specifically, with a group of anyones. 

I need to learn.

I want to learn. I need to tell my own stories instead of watch as my stories are told. I know that's why I like writing so much. It's just me, telling my stories. No interruptions. No judgement. Just me getting to say whatever I want to or have to say, for as long as I want to say it, any way I want to say it. Absolutely freeing. 

But I also want to learn to feel this freedom of my own speech. My own voice. It's something to work on, for sure.

I spoke to Hubby and Sweetie this morning about all this. And they both had some great bits of advice for me to practice. I'm sure there's at least a few TedTalks on the subject too. 

The first step is knowing, right? I now recognize how much I let others tell my stories for me. And how easy it is for me to let them take the spotlight as I sit back, happy enough that I at least brought something up for others to chat about. "The Prince of Tides... it's neither about Princes nor Tides. Discuss." 

But that's all about to change, people! I'm on a mission to learn a new skill. Talking! Chatting! Conversating! I can do it! Woo hoo!

But first, my back pain? Mentioned at the beginning of this post? Yeah. I really can't do much of anything, physically, while in so much pain. Soooo... I feel like I've got really nothing to offer in terms of great story telling from my own life experiences. Not a lot going on for me these days.

I’m sure I could write about it though. I’ll plan to do that soon. 

And I'm getting that nerve stimulator! Sometime! Soon? Who knows?! I'm waiting for the call to schedule. 

Just you wait, though. When I'm pain free (or at least feeling less pain) I'll be back on the move and back to doing things!

Oh the places I'll go! Granted, with Hubby and Sweetie. So if/when I have a story to tell, they will have had been certainly involved in the happening as well. 

But, watch out! Yeah, I've got a story. And it's mine. All mine. And you're about to hear about it!

My way. That's right. 

Sunday, July 19, 2020

Back in the Saddle

Sitting here at the computer desk. A desk Sweetie has more or less claimed as her primary seat in our part of the house. Listening to an episode of Andy's Summer Playhouse's podcast, EyeToEye, as I try to get myself back into writing. I've got the content, albeit changed drastically from what this blog used to contain. I currently have the time to devote to writing. I just have to buckle down and do it. Dive into a topic and go. Let's go...

I guess I can, and maybe even should, first give a brief update on Sweetie. When last we gathered together here at Sweetie & Me, we were just celebrating her 15th birthday. Today she is 17 and a half and has finished her Junior Year in high school. However, in a fascinating twist of events, she will be entering Junior Year 2.0 at the end of August. Since she entered her STEM charter school at the start of 8th grade, not 6th grade which is the first grade available at Junior/Senior High School, she was a little behind in credit accruals. So she basically has 3 semesters of credits still to take in what would only be 2 semesters if she moved on to Senior Year. So - she's a Junior again. With a fair amount of room for Electives and study halls. It will be good for her and she has a great sense of relief in this taking of time. No need to rush toward graduation. This is not a race. It's all good. 

Another Sweetie snapshot to take a quick look at. Just over 2 years ago we complete a year-long process of moving towards a significant diagnosis for her. Just over 2 years ago, Sweetie was officially diagnosed with High Functioning Autism, Executive Function Disorder, and a tendency towards anxiety (but not quite "there" enough to be diagnosed with an official Anxiety Disorder.) The previous year to this, she was diagnosed with ADHD, Combined Form. These diagnoses did not come to myself, my husband or Sweetie herself as a surprise, and they have actually offered great opportunity for growth and development - for all of us. I won't get into any of these details now. Maybe not ever. Who knows. But just to say that Sweetie has dealt with some struggles her whole life, struggles that are now defined. This definition has given her, and us, a jumping off point for dealing with them in healthy, useful ways. She's doing beautifully and has grown into a truly insightful, caring, truth-seeking young woman. A young woman who learns more and more each day about what is best for her understanding of the world around her, and how to communicate her needs to others in correct and useful ways. She's doing great!

As for me. As for this blog. I think we're going to see a significant shift here in post topics. Not only because Sweetie is 5 months away from 18 year old adulthood. She certainly doesn't need me sharing her life's details with the world anymore (I do that enough, still, on Facebook, anyway.) But because I find my life's changes and personal care needs changing - needing more attention in my own right. So, yeah. This blog may be titled Sweetie & Me. But it's time. Time to focus on me. Looking forward to doing that here. Letting my readers know what it's like for me currently as a physically disabled mom... of a physically able child. You got years of me going on and on about, really, just typical "mom stuff" where the disability hardly reared its (increasingly ugly) head. But now I'm older, maybe wiser, and - as I said - in a bit more of an "ugly" way in terms of my disability. (No huge worries. It's just that getting older sucks. Getting older with a physical disability really sucks.) And I'm feeling I need to get back to writing.

Writing has always made me see things more clearly. Helped me sort things out. Helped me find my paths. And lately I've been feeling trapped. Trapped in the house, trapped in my bodily aches and pain, and trapped by my thoughts. That I want to get out. I want so much to write! But I also have a sense of... is it fear? Privacy that I want to maintain? Yet, at the same time, wanting to share my story, share my truth with my readers the best way I know how. Yet, at the same time, not overly worrying certain potential readers of mine with the way I see my life. What I live with everyday. It may be too much for some readers. Readers who are close to me in real life. And so, to not concern anyone unnecessarily, I haven't written. I don't write. And, in not writing, I'm doing myself a disservice. Like I said, writing is and always has been a sort of life saver to me. My written words bring me back to a sense of calm, a sense of reality that is much more manageable than floating disparate thoughts and feelings floating around my head, untethered. I need some tethering. I mean, other than the spinal cord tethering I've already got going on. Which I certainly could do without, actually. 

And so - screw it all! I'm going to write. At least for myself and for a small, trusted army of interested readers. And by "readers" I mean, so far, just one (other than those who happen to stumble upon my blog without any particularly advertising of it, that is.) But I know this particular reader will hear my truth in not only what I'm saying it, but how I'm saying it. Sometimes (a lot of times) it's the craft of writing that's more important (or at least equally important) than the writer's topic of choice. And that's what I need my readers to know and understand. Yes, I may write a post about my loneliness during this time of Covid 19 pandemic (oh yeah, that's going on too - I haven't mentioned yet.) But it doesn't mean that my readers need be concerned for my wellbeing or that I've gone off the deep end into a lonely abyss. I may need to write about my back and leg pain. Yo - it's pretty bad. But it doesn't mean my readers need to necessarily treat me with careful kid gloves in real life, not letting me do things for myself and live as normally as I am able. 

Anyway, I just need to write. And I'm happy to get back to it. Thrilled, actually! It took some time for me to dive into this post and start feeling comfortable at the keyboard again. But here we are, and here I am getting my groove on and feeling pretty darn comfy already. 

Looking forward to this new path that my writing is helping me locate and start down. Looking forward to sharing with my small but mighty audience, and seeing whom and if I want to share with others as well.

Here's to a new start! Let's go...

Wednesday, December 20, 2017

Okay, So Maybe This IS Your Birthday Post...

... Cuz it's definitely your birthday! 15th, to be exact. Happy Birthday, Sweetie!

(Original Post Title: This Is Not Your Birthday Post)

Getting back to the (original) title of this post... Correct. This is not really your Birthday Post. But I suppose you could call it your Official Birthday Post. I'll be writing the real one elsewhere, for your eyes only. Someday. It will be a place where I can really and truly reflect honestly on the past year. It's been a big one, with promises of more adventures to come. But more on that in your Actual Birthday Post.

For now, suffice it to say that Daddy and I are so, so proud of you and impressed with the thoughtful, ever-inquisitive, honest, caring young woman you have become.

You know the importance of hard work, and you get down to it - giving it your all - even if it might take some help with outside motivation to get started, and extra time to complete (true for all of us, sometimes.)

You know the importance of kind words and empathetic actions, even if it sometimes may be difficult for you to express them as intended, or understand them as they're shown to you (a difficulty for everyone, every once in awhile.)

You are unendingly honest, and to see you truly get worked up when you believe you have either unintentionally told an untruth, or believe you have witnessed others being not as transparent as they should be, is both a blessing (A truthful teenager! What an anomaly!) and, sadly, a curse, Why, indeed, can't everyone just "say what they mean and mean what they say"?! (my favorite quote, by the way, by a certain Dr. Seuss.)

You have fun friendships and wonderful peers in your life who support and get you, and whom you help lift up as they need lifting. You have found your "tribe" of cohorts and enjoy every moment spent with them. And when the stresses of schoolwork, or life commitments keep you away from friends too long, you feel terrible that you're being dragged away from "hanging out" with them online or in person to just chat and have fun. But what an important lesson this is that you're learning! Life can and often does get in the way of socializing and "just chillin'" with your friends... but your true friends will always understand and always be there for you when you return.

Your relationship with Daddy and me is lovely, real, difficult, relaxed, comfortable, trying, frustrating, and everything it absolutely should be. We three were talking the other night and you expressed to us, in a bit of sadness, that "you are the only ones who really understand me." And as we described how the "typical" teenager wants nothing to do with their dumb parents, you were in utter disbelief, saying that someone's parents should be the people who understand their kids the best and whom the kids should feel comfortable talking with about anything. Sadly, Sweetie, as sweet and amazing as that sounds, no... it's probably not the way most of the world's families with teens get along most of the time. But we sure are proud of you, love our open relationship, and are confident that you know for sure that you can always come to us with anything that's on your mind. And we know you'll actually come. Maybe not right away. Maybe after some private processing on your own - which is often times absolutely necessary and totally fine. But you do come to us. You do talk, even if it takes you some time to start, to find the right words. However long it takes you, whenever you're ready, we are here and you not only know it, but appreciate it. And so do we.

You say we're the only one's who understand you. Well, we sure are trying, anyway. But way more people "get you" than you realize, Sweetie. The world is full of caring, interesting, awesome people - family, friends, acquaintances, strangers, and everyone in between - who are willing and wanting to see people for who they really are. And with you - despite what less-than-pleasing front you may present at any given moment (don't we all!) - I know they see you for who you truly are - the amazing, honest, smart, great, caring, curious you at your core. Someone who's constantly trying to be the best you you can be - even when it's super difficult to show it.

As parents, who could ask for more?! We sure did luck out with you, Sweetie. You really are the best! (no, that's me.) You're awesome! (no, that's Daddy.) You. Are. Great. Yes you are.

Well, now. Maybe this is your actual Birthday Post. Sounds pretty good to me. I've said what I meant, and meant every word I've said. Even though there are other specifics I could really go on about quite a lot... eh. I don't have to. Not associated with a Birthday Post, anyway. Yeah, maybe I'll write that other post I was talking about earlier - the one I'm not going to publish - just so I can sort out some thoughts for myself. But I'll do it in time. For now - all you need know is that today, on your 15th Birthday and always, Daddy and I are as proud as proud can be of you. We are here for you no matter what joys, concerns, challenges, or revelations lie ahead. And together we can get through anything.

But know this one thing for sure... you are strong enough and wise enough to handle anything that comes your way, all on your own, just because you are you. We believe in you and we know you believe in you too.

You don't need us as much as you think you do, Sweetie. But rest assured that we are here to help you realize even more clearly the strength, independence, confidence, and determination that already lies within.

Come at her, World! She's ready for ya!

Wednesday, June 14, 2017

Questions, Quirks and - SQUIRREL!

Written and published with Sweetie's permission...


*************************************

So. It's the end of the school year. Sweetie's 8th grade year. Done with middle school - on to high school! I cannot believe it. Houston, we have a Freshman.

Mind you, this is not the end of any ol' 8th grade school year. This is the end of 8th grade at Sweetie's new school! The public charter school, listed as the 44th best public school in the U.S., that Sweetie gained entry into only last July, just weeks before the academic year began. It's a fantastic school and she loves it. Hubby and I, as well as Sweetie, truly believe it's the best education for her, and she absolutely belongs there without a doubt.

But. That's not to say her successes this year haven't come without a fair amount of struggle.

Whenever anyone asks us how Sweetie is doing at her new school and how she's liking it, we say she's doing great and loves it... but she's definitely having to work for her grades, like she's never had to before. No more "easy A's" for sure. She works and she tries and she does her very best for every grade she's received, and they're not necessary all A's this time around. But we're super proud of her. We know the determined effort she's put in and have watched her question, cry, struggle, and succeed. She's doing her best and that's all we ask. The effort has surely paid off.

But, in watching her question, cry, and struggle... in watching her get perfect scores on some things and really not so perfect scores on other things (like the important things - tests and quizzes), we really began to wonder what was going on. Trying to figure out why there's such a disconnect. She knows this stuff. She's a smart kid. She can do this! And yet - she hasn't been able to. Not very consistently, at any rate. She's not always been able to show what she knows when really called upon to do so.

She says she doesn't know how to study. Okay - fair enough. Her old school, and younger grade levels, have just not required her to work as hard to achieve success. Not as much has been expected of her as is expected of her now. Yes, she's "just" in 8th grade - middle school - but her new school truly is like a high school in what they expect of their students from 7th grade on up. So, yeah, I really do get that she's never been taught how to or been expected to really hunker down and study for any big tests, before this year.

But I know how to study. Heck, I've tutored study skills to many, many students in my day! I know what to tell her to do. I can help! And I have - several times this school year. She seems to be listening to me. She seems to understand how the tips I have for her could be helpful. And yet... she either doesn't follow through with utilizing my tips, or she's at least not utilizing them in an effective manner. Sigh... what to do....

And then there's that other aspect... Sweetie has always been quirky. Unique. "Weird" in the most awesome of ways! She, and we, have always completely embraced her unique, weird, quirky ways. Sweetie is awesome! Sweetie is great! Sweetie is smart! And... Sweetie is quick-tempered, highly sensitive, easily distracted, and not often the best judge of either understanding others' tones, words and/or behaviors, or able to accurately expressing her own thoughts and feelings.

Both teenager-hood and her new educational environment have made all of this much more apparent over this last school year.

Putting this all together - the disconnect with her grades, her studying frustrations, her quirky "personality" and behaviors - I finally decided to actively look into just what may be up with Sweetie. Is there something more - something we can actually help her with? So I sat down at the computer to do some searching. And, since the only "quirky" thing/condition I could even really name was Autism, that's where I started. But I was very quickly redirected to something else that seemed to describe Sweetie to a T.

Yes! Oh my gosh! This describes her so incredibly well! THIS is our answer!

Once I discovered how many traits of this condition jived with Sweetie's life experiences, I told Hubby what I thought. He was, at first, definitely not as on-board with my eagerness to pursue a diagnosis as I was, but he pretty quickly came around to realizing that it all actually seemed to make a lot of sense.

I wrote to Sweetie's guidance counselors. I wrote to her doctor. I asked, how do we figure this out? Hubby and I were directed by her doctor to a survey to fill out, and I handed over the teacher version of the survey to her school as well.

Then I told Sweetie what we were looking into for her, since I didn't want to be doing this all behind her back, and I knew her involvement would be key as we made our way towards finding some answers. I told her by simply stating, "You know, I've been thinking about you a lot lately, Sweetie, and I think I figured something out. I think your brain works a little differently than most others' do."

And she cried. "What do you mean?! I don't want to have a mental illness!"

I assured her that this was just my opinion at the time and this is just something she might have. I could in no way diagnose her myself. But we really should look into this. We are looking into this.

I told both her and Hubby about an awesome online magazine I found that has a ton of great information. Check it out here.

And in the next few days after that?... Sweetie seemed to come around. She was randomly asking me a few really great questions. What were some symptoms? Could I show her that magazine? and is it true that, if she does have this, she'd be able to get some help for her struggles?

Absolutely!

Since then all three of us have learned a ton more about what may be going on with her. And we've enjoyed learning from a lot of great resources - key among them being this Youtube channel. Jessica, this channel's host, is awesome and really informative. We've loved watching and learning from her. She's taught us a lot, made us laugh, cry, understand and even relax. It's all going to be okay.

In the last couple months since we've filled out the surveys, gotten back the teachers' responses, and scheduled and waited for Sweetie's appointment with her doctor, Sweetie has really pulled a 180 in her attitude towards the possibility of diagnosis. She had gone from "I don't want to have this!" to "I don't see how I can possibly not have this!"

And we agree. It all added up to a big, fat, "DUH!"

Sweetie's new attitude was one of excitement in the possibility of diagnosis because, if she's diagnosed, she now has answers for why she is the way she is and - better than that - a path to getting some help. She knows how sensitive she is. She knows she can have a very quick temper over very little things. And I know she hates this. Any help to curb this - and other personal struggles - would be a great blessing for her.

But still... now I had gone from "person in the family who brought on this unpopular idea to look into" to "person (along with Hubby) who was now worried Sweetie wouldn't receive that diagnosis like she expected to get." I mean - what if the doctor doesn't agree with us? I mean - the surveys from her teachers did not seem very telling at all. She's good in class. She's smart. Nothing appears outwardly alarming about her behavior, as described by her teachers. All we really have to go on, it seems, is our own survey and our examples of bad/quirky/questionable behavior. Was that going to be enough?

Well - we recently had that appointment, in early June. And...basically, Sweetie's doctor is amazing. She saw how the teachers' surveys actually were noteworthy, in that there were noticeable inconsistencies in how her different teachers see Sweetie/what her classroom experience is like from class to class. Sweetie's been seeing this doctor for several years now - she knows Sweetie! She's personally observed some of her quirks. And she listened to us. About how she behaved this inappropriate way in Kindergarten. How her 3rd grade teacher observed this about Sweetie's motivation level. How she recently reacted when this happened. How this past school year and hormonal changes seem to have made her life-long "quirky personality traits" more prominent and obvious. There's something about these quirks and inconsistencies that just all adds up to....something, right?

Right.

Diagnosis: ADD and Executive Function Disorder.

Well then. Good. We all agree and can move forward from here. Starting with some daily supplements for Sweetie to take to help with focus, and immediately working to put in place a 504 Plan for the next school year, based on some suggestions for accommodations from Sweetie's doctor.

BUT - Sweetie's doctor also wants her tested for possible High Functioning Autism or Asperger's Syndrome. (there is a difference between the two, but only really in how they manifest. With High Functioning Autism, the young child struggles with language development. This was definitely not Sweetie's experience, so I'm leaning toward Asperger's, if anything.) The process to get this diagnosed is quite lengthy, and it means making more appointments for testing with doctors and psychiatrists who schedule out several months ahead. But it's a process we'll go through to get it all figured out.

This suggestion of possible Aspergers was/is surprising to we 3... but, I don't know... maybe not that surprising. I guess what we see in Sweetie as manifestations of Hyperactivity (impulsivity), and her lack of great understanding of social cues, among other things, is what's leading Sweetie's doctor to make this suggestion. She's definitely not H - she's clearly not hyper. But have you ever considered High Functioning Autism or Asperger's?

Everything we listed from there on out - Sweetie's poor time management skills, her literalness, her quickness to temper, her extreme sensitivity, her preference for structure, her sometimes troubles with transitions - all seemed to be another check mark in the Asperger's column, and maybe not so much a symptom of her ADD (or ADHD, as we had self-diagnosed.)

But, with the warning that we would be looking at at least a year-long process before getting any diagnosable answers on the Asperger's front, we knew we wanted and needed some sort of immediate help for Sweetie to grab hold of her challenges in the present. The ADD and Executive Function Disorder diagnosis, starting daily DMAE supplements, and a letter to her school requesting accommodations, function as just that - immediate help for some immediate issues.

I know there must be readers out there who think, you know, maybe it's just that this new school is too much for Sweetie. She can't handle it, shouldn't have to handle it, and would be better off in a less academically challenging environment. I mean, it's just been this year that she's been struggling under all the pressure of so many difficult assignments and much greater expectations. But I say, absolutely not! And Hubby and Sweetie agree. We know this is where she belongs. She does love this school. She just has a whole new world to try to navigate that she's never had to make her way through before. And it's difficult. Because she legitimately has some differences in the way her brain works. And now we know. And now we can move forward with greater success.

I'm actually extremely thankful for these challenges from this new school, since they helped bring to light some issues Sweetie has always had, yet has until now been able to fly under the radar with. Girls just don't present with ADD/ADHD like boys do. Boys with ADD/ADHD get diagnosed way more often than girls. Smart girls with ADD/ADHD especially can easily get by in the elementary years. But as soon as the stricter, more academically challenging middle or high school years hit, then everything starts to break down for girls with ADD/ADHD. Sweetie can no longer manage her time like she once could fake her way through, she can't afford to daydream, process the onslaught of rapid new information, manage trickier social cues, etc., etc., etc.

Imagine! If Sweetie had stayed at a hometown public school throughout high school, she likely would have continued to breeze on through, relatively easily earning her A's and high B's. And then? She would have gone off to college - probably a noteworthy college where perhaps she may have even earned an academic scholarship or two - and... flailed. Badly. So - yeah. I'm super happy that this has all been figured out now, so she can get the accommodations and other helps needed to get herself back on track, increasing her self confidence and helping her studies improve. If she can acquire the necessary skills, techniques and accommodations today, she'll be ready to tackle the world head on tomorrow.

Yes, Sweetie's got quirks. She's always had them. This "new development" is not the "fault" of her new, tougher school, nor is it new, really, at all. She's a smart, conscientious girl who has always loved school, has always treated her homework like her job - a job she has no choice but to do her best on and complete in the timeframe given. No complaining, no issues. She just has always done her work and gotten great grades, the end. So when that wasn't necessarily happening this year, and her quirks seemed to be getting quirkier, and she just didn't seem to be maturing socially/behaviorally like her friends and peers, we knew it was turning into something that needed exploration, not dismissal. We were no longer able to comfortably say, "yeah, we don't like it, but that's just the way she is. It's just her personality." Well, you know what? It is the way she is, but there's good reason behind it. And the good news is, it's something for which she can get help!

Sweetie is still Sweetie. Nothing has changed. Just because she now has a diagnosis doesn't mean she now has an excuse, or a label, or a reason to feel defeated. Heck, no! Just the opposite! If anything, she now knows that the difficulties she's experiencing/has experienced her whole life are due to a real medical condition. She's got nothing to feel bad about. It's nothing she's personally done, nothing we've done (or not done) in raising her, that has created the struggles she's been dealing with. Her brain just works a little differently than others'. And! There are accommodations that can be made to help her succeed again. Medication (if needed), supplements, techniques, and support. We've got answers. And with answers there is learning, growth, and - best of all - thriving.

The only real difference for us as her parents, as her family, is that now we too have answers and understanding. We see how she needs us to be more understanding of her quirks, and less angry when she's not able to do something the way we think it should be done. When she doesn't "get" something "so easy", now we know it's not because she's just being stubborn. She really does need help seeing things in a different, clearer way for her. A way that makes sense for her. It's okay. She'll get it, if we just give her time and help show her the way, in a new way.

Understanding leads to success. That's the name of this game. Set up the board -we're ready to play!




Friday, March 10, 2017

How Do You Solve a Problem Like...?




What problem, indeed?

I've been asking myself this question lately a lot. And, specifically, I was mulling this very query the other night at the call center where I work as a Cash Acceleration Representative (a fancy way to say I call people who haven't paid on their medical bills to offer them payment plan or financial aid options.) As awful a job as it may sound, I really do love it. I don't like the evening hours work schedule, keeping me away from Hubby and Sweetie. But I do enjoy helping people and making them see there is another way to get past these particular financial issues - ways that will benefit both them and the hospital. That moment when an angry person actually stops to hear what I'm saying and is both surprised and pleased to learn about the payment plan or financial aid option, and they actually end up genuinely thanking me for giving them a call! Makes my day every time. There's no better feeling than knowing you've helped someone who feels like they are hopelessly drowning, realize that you have a life jacket just their size they can put on. Love it!

But anyway... yes... I was thinking about this video (above) Hubby and I recently saw, and this very question of "What problem do you want to solve?", and generally just feeling a bit fitful about life, when all of a sudden it hit me. Like a ton of bricks, as the saying goes.

I want to advocate for adults with Spina Bifida. More specifically, for adult women (and men) with Spina Bifida who want to have children.

Still to this day - what? nearly 12 years from when I started this blog - if you search for "parents with Spina Bifida" on the internet, you nearly only get resources about being a parent who is raising a child with Spina Bifida. Granted, if you search simply for "adults with Spina Bifida" you do, in fact, find a plethora of websites and articles to explore that at least, in part, discuss what it's like to be an adult with this birth defect. However, in taking a quick look at some of those resources, very few discuss pregnancy and/or parenthood as a viable option for such an adult to consider. In fact, the Spina Bifida Association website itself, on the page dedicated to Adults, has several sub pages to click on for the curious adult with SB and one of these categories is Family Planning. Now, you'd think that that page would be all about the steps an adult with SB needs to consider and play out if they and their partner are seriously considering starting a family. Hah! You would be entirely wrong, my friend! No, the Family Planning section on the website of this national organization dedicated to supporting and educating people and families of people with Spina Bifida is directed towards the healthy adult woman as she finds herself pregnant with a child with Spina Bifida, what she needs to know about the birth defect, and how to proceed with the pregnancy, as well as how to care for the child after birth.

I mean, I just can't even!

(Full disclosure: another sub page that you can choose to explore is titled Prenatal Care and Issues and that page is for the woman with Spina Bifida caring for both herself and her unborn child as she works her way through pregnancy, delivery and caring for the newborn at home. So, yay. They got some useful info out there. Good for them.)

So! I want to change this! This is the problem I want to work on and solve! There is entirely too little information out there for individuals with Spina Bifida who want to make a real life for themselves. Just sit down, do your exercises, go to the doctor, and get through your simple, inconvenient, different life the best you can. That's pretty much what I feel the message to adults with Spina Bifida (and other disabilities) currently is, and it's awful. Everyone is entitled to the best life they can lead! If someone with Spina Bifida wants to have a family - they should be able to do it! And, yes, for some it honestly may not be the wisest choice or even medically possible to endure a pregnancy. But there are other options! Other, "healthy" people who can't have children still can find a way to bring children into their lives, either through adoption, surrogacy, etc. So too should be the case for a disabled person if this is what they really want and they prove themselves able and qualified (just like a "healthy" person has to go through certain hoops when adopting, etc.)

So. I came home from work that night and told Hubby that I had pinned down the problem I want to solve. When I told him, he was curiously interested, reminding me, "That's what you've always said. That's the reason you started your blog." ~ "Well, it's still true!" Advocacy is still just as desperately needed as ever, and I want to find out - beyond "just" my blog - what concrete positions are out there, what career fields, what volunteer opportunities, what skills are needed and how do I acquire or improve them, to aid me on my solution to this problem. Where do I start?

As for my current skills and interests, I think they all work very nicely indeed with establishing a good start on this path towards patient advocacy. I write well and love to do it. For as quiet and introverted as I am, professionally speaking I am a great "people person." I love the whole world of education and have loved tutoring kids one-on-one over the years, as well as subbing at Sweetie's new school. I really love those particular kids, their drive and determination, their individuality, and their energy and creativity. I'm extremely interested in helping others discover their best selves. In short, I love helping people and I have at least the beginning skills to assist people with seeing their true potential and working with them on concrete goals to get where they want to be.

And as for my blog - this blog... I stated last night to both Hubby and Sweetie that I started this blog as a means for adults with Spina Bifida to know that it is possible to have children if they want, and to take a look at my particular struggles and triumphs with parenting as a disabled person. Yet in actuality, it's really turned into "just another mom blog." To which Hubby looked at me for a moment, until I followed up with, "...and that's the point, isn't it." I'm "just" a mom. I'm no special thing. I'm no amazing woman who heroically did something I wasn't supposed to do. I'm certainly no miracle worker. But Hubby and I did see through a goal for which we didn't have much information, nor with real life super knowledgable support systems in place. Sure, our doctors were excited and helpful and willing to learn along with us, and certainly knowledgable enough to make us feel secure. But they, by and large, honestly did not have the real world history of experience in dealing with "people like me" as we began our journey into and through pregnancy and childbirth. No information out there - we just knew we wanted a family and we went for it, with the support of awesome medical professionals who cared for us well and learned a thing or two along the way by working with and for us.

Adults with Spina Bifida can have children, if that's what they want. One way or another, they should see their dreams realized - whatever they may be! There are so many individuals with disabilities out there who want to be "just a mom" or "just a dad."  If I have anything to say about it, I will help them know it's possible and guide them toward the necessary resources to make sure their experience is as healthy, responsible, and smooth as possible.

Problem, consider yourself challenged.


Tuesday, January 03, 2017

I Could Go On...

Well, Sweetie - this one has taken me awhile. Your big day was 2 weeks ago today and I haven't yet written you a birthday post. But I think I can do it now. I'll give it a go, anyway.

It's easy enough to start off by wishing you a happy 14th birthday. Just like every year, I'm amazed to see the time rush by. No longer a new teen, you are now clearly in it, as much as you yourself may wish to deny it.

I can't remember where we were or who we were talking to recently - maybe your great grandfather? - when we brought up your recent birthday and your newly-achieved 14 years. "A real teenager" I think I said, to which you quietly but defiantly answered, "No I'm not." Now, I know you know how old you are and that, logically and sequentially, that does, in fact put you in your teen years. But I think what you may have been getting at with your almost throwaway comment was that you do not see yourself, or want to be seen as, a stereotypical teen. A category of person who, not altogether rightly, tends to get a bum rap as all things apathetic, uncaring, crude, and... I could go on. Because you are none of these things and, more importantly, you don't see yourself as possessing any of these typically unsavory teenage characteristics. You are, and you pride yourself on being, caring and kind, intelligent, unique, inquisitive, confident, loving, humble and... I could go on.

But you also know better than to let people categorize you or anyone into any particular stereotype just because of your... anything! So snap out of it, Sweetie! You are you and you are - as always - great, no matter your age or anything else. You know better and you know how awesome it is to be you. Go out there and show those who may unfortunately try to categorize you that you don't fit where they are trying to put you. You make your own category and enjoy being with others who support who you are, while you love and support them. Daddy and I know you and we love who you are and we are proud of your choices, beliefs, ideals, and... I could go on. Make your own way, bring along friends who are also challenging (for the better) other's ideas of what teens are typically like, and have a blast on the journey. Your nerdy, amazing, unique, thoughtful, loving self makes us proud to watch you lead and grow.

And, my, how you've grown this year, Sweetie, in so many different ways. Over this Christmas break I happened to see a video I took just one year ago at Christmas time of you and I enjoying a "coffee and coloring" (and hot chocolate) date at our favorite coffee shop hangout. Oh my goodness, how different you looked! A small girl compared to the beautiful young woman you have become. You are now undeniably taller than me (and you are begrudgingly getting used to that fact.) Your sense of style has become your own funky thing, complete with an indigo streak of hair at the longest section of your asymmetrical haircut, and your vocabulary and general manner of communication has vastly improved in the shortest amount of time. Seriously - Daddy and I noticed an incredible improvement in your communication style literally just 2 days after you started at your new school (a school which you absolutely love, by the way - a school you feel so challenged by, comfortable at, and have just settled into both socially and academically so beautifully and with such amazing grace and gusto). Anyway. Yes. You are no longer that little girl who sat across from me at the coffee shop one year ago. But we do still have our coffee and coloring dates from time to time, which I love and I know you do as well. I love how much we love hanging out, enjoying each other's company, having quiet fun together. May it continue always.

I could go on and on about all the different ways you really are a great person. But I'm satisfied enough to know that you know how very much Daddy and I love you, support you, and are proud of you in so many different ways. Yes, this post has been difficult for me to write because - I don't know - maybe I feel like, because you do already know where you stand with us, that there's just not much more to say. Nothing much more, at least, than what I've already written to you in any of my other birthday posts to you throughout the years. Even with all your personal changes and growth and everything unique about this particular year... the nuts and bolts of it all remain absolutely the same. You are you. You are great. You are loved.

I will say, though, that for any of the things about you I wish would be just a little different, a little more "with it", a little more grown up or whatever the case may be... well, I could add all that in to this post, as I tended to have done in years past as well as countless other blog posts since I began writing here. But, you know what? It's no one else's business. No one else needs to know the particulars about what I worry about for you, what I wish you'd do better, what I want you to learn about and apply better to your life. You know. Daddy and I have talks with you all the time on all sorts of self-bettering topics. That's our business and not anything that needs to be addressed in a public forum such as this. Suffice it to say that - as much as I go on and on about how great you are and how much pride you bring us everyday - there are things for you to work on. Heck, there are things for Daddy and I to work on! Everyone on the face of this earth has areas to work on, and if someone says they don't - they are lying. No one is perfect. Everyone has lots of room for growth and improvement. Especially teenagers (yes, in this case I'm categorizing all together.) Don't fight the lessons, Sweetie. Know they come from a place of love. Know that - as always - it's behaviors, attitudes and habits we are most concerned about improving, changing, or taking a closer look at. You can do better. We all can do better. We don't expect perfection from you or anyone. We just expect a general sense of improvement and positive growth - and we see that in you all the time.

We know you are capable of all great things, getting better and better each day. Just keep moving forward, proving this to yourself and you'll make us, and yourself, happy for a lifetime. Happy Birthday, Sweetie - we love you. May the year ahead bring you great joy, happiness, love, accomplishment, pride - I could go on.






Wednesday, November 09, 2016

Day One

From day one we have raised her to believe in herself and know that - without restriction - she is loved for all she is, all she will become, and all she will do.

From day one, we have not just stressed to her the understanding that all lives matter, but have truly and intrinsically lived this message and encouraged her to live it as well.

From day one, she's understood the strength found in being herself, loving herself, and she celebrates - enthusiastically - that each and every one of us has the ability to hold this same personal strength.

From day one, she has known others who are different - myself primary among them - and are just as strong, just as important, as she is and aims to always be.

From day one, we have instilled in her our UU principals, first and simply through our actions and beliefs, and secondly through our church community whom we've grown to love so much.

From day one, she's known that she is no more better or deserving than anyone else. Everyone has a seat at our table. (same message as previously mentioned but - it bears repeating, no?)

From day one, she has loved without limit. She knows, above all else, that "love is love is love is love is love is love is love is love."

From day one, we have fostered in her a deep love and respect for the earth she lives on and a great responsibility to take care of this home.

From day one, she has been curious about everything and her curiosity has been encouraged to grow, to reach, to examine, to believe.

From day one, her imagination has been made limitless, her ability to think and dream and create made to run deep and wide.

From day one, she's known, without a doubt, that the magic is inside of her. Her ability to change the world is there to be developed and encouraged at her core, just as it is in each and everyone else in the ways that they hold most personally true.

She goes to an incredible school where intelligence is revered. Where kids talk out of turn not about gossip and spite and fluff, but about homework and classes, friendships and futures. Where everyone is the same because they each are so awesomely different. Where bullying is at a minimum because this individuality is so much the norm. Where kids are nurtured as they figure out just who they are - where she is comfortable to delve into the depths of that question for herself. And she knows that absolutely any answer will be accepted - by her friends, by us - as long as she is true to herself and strives to always be as great and good as she can possibly be, to herself and others.

And now - she's scared. Her friends are scared. We are scared. Scared of a president-elect who is a racist, sexist, bigoted, prejudiced, homophobic, bully, sexual predator and liar. Someone who will seemingly work to destroy the rights of everyone whom we've taught her is worthy of respect, love and compassion. Including people she personally knows, loves, and respects. Including her friends. Including me. Including herself.

How can this be? Just - how?

I want to cry. I want to be sick. I want to disassociate myself from this country in any way that I possibly can.

But most of all, I want the next 4 years to not play out as terribly as I fear they may. I want my daughter to feel comfortable in the world in which she lives. I want her and her friends and everyone she holds in her heart to not hide in fear of how they live, what they believe, who they love, and what they look like. I want not only tolerance. Not only acceptance. I want love. I want peace. I do want a great America, and a great world. But absolutely not at the cost of everything our president-elect stands to destroy. No - these are the very qualities we need to strengthen and bolster, not rip away in hatred and disgust.

I, for one, am on a mission. A mission to keep in tact all that I love about my country. All that I want my daughter to believe about the place she lives and, indeed, about herself.

Day one starts again, and it starts with action. It starts with - continues with - love. It starts right here. Let's go.

Saturday, August 06, 2016

Just a Little Thing...

That's right. I'm taking a moment in the midst of my/our summer-of-theater craziness to let y'all know just a little thing...

Drumroll please...

Sweetie got into her dream school!!!

The specialized STEM-based charter school I've mentioned before? The one that's highly rated in not only our state, but the entire country? The one where the admission process is purely lottery-based and - as we found out back in early spring - Sweetie did NOT get into? Yeah - that one!

The email came just over a week ago. I was the only one home to receive this and I could hardly believe my eyes. I immediately called Hubby and together we were in shock. How did she go from the far back end of the pack in a grouping where only 3 incoming 8th graders were admitted, to now being asked to attend?! And what was Sweetie going to think of this? Originally, this was the school for her, in her eyes, and she was super excited to apply. However, knowing that she did not end up getting in, she pretty well accepted the fate, knew that she'd try again for 9th grade, and in the meantime would be happy still to be at her home school with her good friends. Still a win! But now! This complete 180! Would she be happy? Would she be resistant, since she had no notice and no chance to say a proper goodbye to her current school friends? Just WWSD?!

Alas, we wouldn't know for several hours. At the time, Sweetie was at play practice for one show, followed immediately by a matinee performance of the other show she was in (which my mom and I attended, both knowing full well this exciting turn of events, but both swearing that we'd keep this info to ourselves for the time being). I happened to see Sweetie, in fact, a few times before she performed, but I was not about to tell her anything this profound right then... she needed to focus on the task at hand and I didn't want to give her any distractions.

But then, of course, I had to go off to my evening job, which doesn't get me home until close to 8:30 pm. Hubby promised that he wouldn't tell her either, until I was home. This was a family moment and a family decision. Of course, Hubby and I already knew that Sweetie pretty much had to accept the offer and go to this new school. Again, we just weren't quite sure what her reaction would be. We, as her parents, could always make her go, whether she wanted to or not. But - no... at this school, with this work load, and this high standard placed on academics... we knew Sweetie had to be fully and happily onboard with switching her education to this new environment.

And - long story short(er) - she was/is fully and happily onboard! Her only slightly negative/sad comment when we told her, after settling from the shock of it a bit, was that she didn't get to say goodbye to her friends at school. Not that she wouldn't switch because she didn't get proper closure - but just that it is sad it didn't happen for her. Yes, Sweetie. That is sad. But we will work hard to keep you in touch with and able to get together with your in-town friends as much as we possibly can. Starting with a bonfire at the end of the summer for you and all your friends from school and your after school program, and also inviting your bestie along with us when we go away for the weekend in September. Friendships are important, and we know you'll make many new friends at your new school! But maintaining those you have is equally as important and we will help you in any way we can to make sure those connections you've made are not lost (or only now maintained through technology and social media.)

So! Sweetie is changing schools! To a great school! Dedicated to the subjects she loves and wishes to pursue further. I've always driven her to school anyway, and this new school starts later than our town school does. So we'll basically have to leave in the morning at the same time we always have. But her new school gets out later. That may be trickier to manage, but I will have time to pick her up before my evening work, and we have friends and family and a school carpool system that can help us as we see the need arise.

Yeah. Just one little thing. Changing schools. Kids often do it anyway when moving up from Middle to High School. Sweetie's just doing it 1 year earlier. The rest of our lives go on unchanged...

...Or do they?

Hubby and I have said since the day Sweetie applied that, if she were to get into this school, that would give us an easy out of our current living situation. We are not fans of our current living situation. We moved here in a hurry and took what we could quickly find. It's been fine. But, no, we are not fans. And kids attending this new school of Sweetie's can live anywhere in the state! So, if she got in, we would easily have an excuse to move without any upheaval to her schooling. Plus, if we moved further south just a bit, Hubby would be that much closer to where he most often travels for work. That would put us closer to Sweetie's new school, and closer to my evening job's location too. Huh. And looky there! Sweetie did get into this school! Time to start looking for new digs!

Moving would not only be good for being closer to our most-often-travelled-to destinations, but would also - theoretically - give us more space to spread out in. Sweetie is going to have a lot more homework than she is used to. This new school of hers is intense in their academics and promises students about 4 hours+ of homework each night. Where we currently live is not conducive to allowing Sweetie her own space for working, while also allowing Hubby and I to go on with what we want or need to do for the evening. Basically, we are all together all the time in our current, tiny living quarters. If Sweetie has homework, she is at the dining room table, which is right in the same room as the living room and TV where Hubby and I are. Maybe we want to watch something! Maybe we want to talk! But Sweetie is doing her work and needs quiet. And so, it's a quiet night for all of us. That situation has got to change. Moving, to the right place of course, would allow for this.

Of course, in our current situation, Sweetie could just go up to her room to do her work. And, in fact, that is exactly what she is going to have to do. But that's not entirely ideal either. I actually want to be able to keep tabs on her as she works, so I see she's working and not becoming distracted. Plus, if she needs access to a computer, as I imagine she often will - well, then she has to use our one and only family computer, which is in our living room. Perhaps if we moved we could find a better location for the computer that puts it in its own separate space, but yet is accessible enough on a regular basis for all our use. At any rate - our current living situation is entirely too small and cramped for we three.

Not to mention, if Sweetie for some reason decides that this new school is not for her in the end, we prefer to be in a town that has a much better school than where we currently live. A town where their STEM program is impressive and challenging. I know other towns close by to where we currently are that fit this bill. But, we have to live in such a town for Sweetie to fall back on that school system. Put another CHECK in the "reasons we have to move" column!

So, new school = moving. Not immediately or anything. Definitely a casual sort of looking around, though. On our own time, this time. That's it. Or?...

You know that evening job I've been mentioning? Well, with Sweetie now about to embark on a much tougher school than she's used to, I'm feeling more than ever that it would be beneficial for me to be available to her in the evenings. As it stands, she will have to often fend for herself until her dad gets home - which is also usually pretty late. But if she had a parent home more regularly in the after school/evening hours, I think that would be best. Not that I nor Hubby would be able to actually help her with her homework. We are decidedly not math and science people! But just to be there. To listen when she needs an ear, to guide where we can guide, and to provide a regular, at home routine for her after school working hours that are not interrupted by being picked up from a grandparents' house or some such place where she's been instead. Yeah. Not working at my evening job would be great.

But - we desperately need the money. I'd have to replace the job with some other employment. And, of course, that other employment could make life difficult to impossible to continue the other jobs I have and love. And, you know, for as much as I don't love working evenings, I do really like this job, as well as the other jobs I have. And they all currently fit very well together and allow me a great daytime schedule where I'm easily accessible to Sweetie if needed. So, there's that. Looking for a new job would probably be good for me to do, but looking for a job doesn't mean one will come along quickly. Or that I'd even be hired. And, what I've got now really isn't so bad, in the grand scheme of things. But... it's all just something to think about. Just one more little thing...

And, of course, Sweetie is going to have to take on a whole new focus on school. Mind you, she's always been a good student. She never fusses about getting right to her homework after school. And - whatever the subject - she does her best to do her best. And it's paid off! She usually makes straight A's, if not maybe sprinkled with a few B+'s or B's. She made the National Junior Honor Society last year. She's a good kid with a good head on shoulders for academics, and is comfortable with her position as a top kid - grade-wise - in her "small pond" of a town school. But now she's moving on to where she needs to realize it's going to take a lot more effort to reach that same status. And to get somewhat lesser grades in this new "pond" will be just as impressive as what she's been doing all along. It will take a lot more effort to get those somewhat lesser grades. But Sweetie will do okay. She really does view her school work like a job. Never questioning or complaining that it's got to get done, but hunkering down and just doing it, to the best of her abilities. I'm sure that will continue on at this new school.

She will also have to join a new Destination Imagination team! When we reminded her of this - pointing out that she wouldn't be able to stick with the team she's been with since 2nd grade (granted, only one other girl on that team - one of Sweetie's good friends - has been with her all those years on this team. Other members switching in and out all the time), we though she'd be sad. And she was, a little. But mostly she was excited to join a team that is - theoretically - more focused and bonded and ready to tackle the more science-based challenges. Sweetie's team started off doing the Engineering challenge way back when, and they did pretty well with it. But then the team and the team dynamics changed and they moved more towards the arts based challenges. I think - we all think - Sweetie should get back into the more science-y challenges. And, because all of them require creativity and theatrics to do well, Sweetie assures us that she can help her new "all science-y" team improve their artistic component of the challenge, what with her love of and talent for art, and her experience in theater. Yes, you can, Sweetie! I'm excited to see how far you and your new team can go!

One more thing - Sweetie's new school does not offer Physical Education classes, but they require them. Just the minimum required by the state, so it's not much, but it's something. So, to that end, Sweetie will have to engage in some sort of physical education along the way before graduating. This is a new concept to her. Well, of course she's used to gym in school, but she's always disliked it and never felt comfortable there. She's just not a sporty type. But now, she'll have to pick some sort of physical class or team to be a part of to earn the credit. We are thinking martial arts. It would do her a world of good, we think, and Sweetie actually seems interested in and a bit excited about it. But - it can wait, for now. For now, she needs to just settle into the school and get her bearings on the academics and the overall school environment. Extra curricular will come. She does plan on being a part of DI right away, so that is enough. For now. Even acting will most likely have to take a back seat for right now (we usually let her do the fall musical at the local Boys and Girls Club, since it's usually done and over with before DI kicks in). But - we'll see. I know her new school has an active drama club. Perhaps that is something she can get involved in along the way.

So, yeah. Just one little thing. One great "little" thing! That's having a big impact on not just Sweetie's life, but all of our lives.

One thing's for sure, though. It's going to be one heck of an adventure! So excited to take this ride with her and see where it lands not only Sweetie, but all of us.

Let the ride begin!