Wednesday, June 14, 2017

Questions, Quirks and - SQUIRREL!

Written and published with Sweetie's permission...


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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.